MS Day Dreamer

Drawing the line...is the world black & white, or are there shades of grey?

2011-07-01T11:52:00.003-04:00

I was involved in a conversation recently on Facebook. The topic "Monkeys found in Oregon" was an article about how researchers in Oregon found a link between a naturally occurring disease found in monkeys was linked to MS. I did some further research on this, and discovered that the monkeys have been dying in Oregon starting in 1986 from an unknown disease. This disease has since been identified as the monkey form of MS. Recently (in the last 5 yrs or so?) they have discovered a vaccine that prevents the monkeys from getting the disease.

To me, that is a sign of hope for the future, that a cure or vaccine will be available for humans. Might be too late for me, but it could maybe save future people not even born yet.

Diane's post then started a conversation about whether it was right to use animals for research. One person felt it was very wrong. Using animals, is cruel, inhumane, and inexcusable. Doesn't matter that the outcome benefits future generations. It is just wrong. For her, it was very black & white.

I can understand that viewpoint. I don't agree with it. I guess I think sometimes the ends can justify the means. I don't like to see animals hurt or tortured. I don't like to see any innocents hurt or tortured. But I also know that research can result in things that save lives. Do I value an animal's life more than a human's? The other person mentioned they valued the animal's life more than their own. But would they value the animal more than an innocent child? where to draw the line? My world is more grey.

M & I recently went on a bike ride organized to raise moneys for a local community park. The route went over some rural roads, through some farm land. We past a farm house, which had a lady outside tending a flower garden in her front yard. 3 huge turkeys were walking up to the rode nearby. We stopped to take pictures and talked with the lady. The turkeys (2 toms and a hen) were beautiful. The Tom's were strutting their feathers all puffed. The lady said they were very social. That they follow them around and seem to like people. She mentioned they had gotten the turkeys to raise and have for Thanksgiving dinner last year, then planned to have them over Christmas, then for Easter. Finally they faced the truth that the turkeys were just pets. They couldn't bear to eat them. She said the hen has sat on eggs, but that they take the eggs from her because they couldn't face having 20 some-odd turkeys following them around.

I could never be a farmer and raise animals to eat. M's dad W talked about having beef cattle for a period of time, but made the mistake of naming them. Then he couldn't bear to take them to slaughter. They became pets, he did end up selling them. If I was to have cows, or pigs, or chickens or any other animal that I was trying to raise with the intent of eating their meat, I know I couldn't do it. I would get too attached. But that doesn't make me want to become a vegetarian. I still like to eat meat. See, grey.

I'm a softie when it comes to animals, and really any innocent. I don't really want to see anyone hurt. Although there have been people in my life that I wouldn't shed a tear for, and I really do think there are people that have no conscience and are pure evil. I'm not sure I would care if they were the ones to get hurt.

I have written about our cats. They are part of the family. They were all rescue kittens. And they have a good life. Diane mentioned about how it could be viewed very wrong that we humans try to domesticate wild things (cats) and that that could be considered just as cruel in some ways as keeping monkeys in Oregon. What about birds? People keep birds like canaries or parrots as pets. Keep them in a cage. Clip their wings so they can't fly off. Is that right? where do you draw the line?

I just don't see the world in black and white. I can't. There are so many shades of grey, I can't tell where that line is. I think it might vary on the circumstance. I just don't think there is any hard fast answer.

friends, family, aquaintences, or enemies?

2011-07-01T11:50:00.001-04:00

Keep your friends close, but your enemies closer. People choose their friends but can't choose their family.
Sometimes friendship bonds are tighter than family bonds.

Something happened recently that made M question who her friends are. Specifically whether someone she considered as one of her best friends was really even a friend at all. In my opinion some of what the "friend" did was a betrayal of trust, friendship, and was inexcusable. Yet the friend blew it off, no big deal. Loss of trust is a big deal. Especially when it violates ethics, almost gets M into legal trouble, with potential of losing her license, potential of screwing up her passing a security clearance for her job.
So, yeah it was a big deal. So, yeah, K you can't just forge some one's name on a legal document and then say "oops" no biggie...it was just "temporary" until the "real" document showed up.

Once someone betrays trust, then you doubt everything about that person. And I think it makes you look at all your relationships in a new light. At least M did. She came to the conclusion she really didn't have any "real" friends.

Personally I think she has friends, same as I have friends, sometimes the friends you think are close, aren't so close, and sometimes the ones you tend to overlook are the ones that will be there for you when things get tough.

I think the old saying is true that each of us impact so many people, so many lives, in small imperceivable ways, and we never realize it. Yet because of things we say or do, we can have great impact on others. In a good way or a bad way.

Spring, has sprung... time to ride bike

2011-04-14T13:39:00.000-04:00

Finally Spring. Monday was a really beautiful day. Plus a special day. 26 yrs ago my daughter was born. My favorite, of course she is my only, but she's still my favorite. This weekend was a nice weekend, although a little on the cool side.

We went riding a week ago Sunday, (M & I) and put in about 19 miles. I did really well, kicked butt. M was worried about whether I would make it for the bike ride we have scheduled for this coming weekend (the 16th), but she had a lot more trouble than I did. I had been riding inside, with my bike up on a indoor stand, I like riding my own bike much better than riding on our excercise bike, I don't find it comfortable. I admit though that I am bad about procrastinating riding indoors. Call me lazy. that's really most of it. I like riding outside, that's different.

For my daughters b'day we helped her get a new bike. A nice one. She's been working really hard at losing some weight and getting in shape. She has started doing irish folk dancing - which is pretty cool, and a real workout, plus watching what she eats, and has lost around 25 lbs. Good for her! We spent Saturday picking up the bike, and went for a short ride, then on Sunday we met the kids (her and her boyfriend) and went for a ride near their house. We did 20 miles on one of the rail trails. Great ride, but a little chilly. After the ride we took them out for their birthdays (J's is 4/11, his is the 13th). I think we all had fun.

I'm riding pretty well, even with my knees. My knees are bad. But I can ride better than I walk. My main problem is stopping - have to make sure my knee won't give out, that's how I broke my ankle last year. Hills are a problem. Or difficult climbing. I have to remember to shift down, and even if I do in time, if it is a tough hill, I might not make it. I have to judge it right so if I'm not going to make it I can stop and get off and walk it. If I push too far, I take the chance of not making it and not being able to stop, and get off without crashing and burning. How hard can stopping be?

The rest of the week (until today) was rainy, damp, cold and miserable. Or may that was just me that was miserable. My arthritis flares up in the cold damp. My MS feet flare up in cold damp. Maybe you know what I mean? My feet are cold, fuzzy, and it feels like I"m walking on a balled up sock under the ball of my foot. It isn't they are numb. I have sensation in my feet. They just are fuzzy/tingly, whatever. When they are bad, then you can test easily for the babinski sign. My big toe will fly up. When it is warmer, then my reflexes calm down at least some. I know it is the heat that effects most MS people. But it is the cold that effects me. Heat can actuallly help me sometimes. Like soaking in the hot tub. I'm glad too. As much money and effort we put in to installing it, and creating our little getaway with the two decks and fences behind the house. I read something on Lisa's (brass and ivory) blog regarding Uhthoff's Phenomenom, and its opposite - Inverse Uhthoff's syndrome. I think that is me. I didn't really find any other text or information on it, but here is the link to Lisa's blog - http://www.brassandivory.org/2011/04/heat-sensitivity-and-uhthoffs.html

Today, however is a beautiful spring day. Went outside at lunchtime without a jacket - short sleeves. Think the temps were mid 60's. Sun shining. I hope it will be as nice tomorrow & Saturday for our bike ride.

Spring? or Snow... Brrrr

2011-03-24T15:18:00.000-04:00

Ok, for about two weeks now I wanted to write a post about spring. The weather was getting warmer, I was ready to get my bike out and thinking about riding. Signed up again for the MS Ride - this year it is the Mason Dixon Challenge and takes place in Gettysburg July 21. I have been riding my bike indoors, (I have a special stand for it) but that isn't the same at all. We need to get busy and ride, M & I are signed up to do a Ocean to Bay ride that takes place down in DE (Bethany/Fenwick Island) on April 16th. I'm not sure I'm up for doing 30 miles. Actually I'm as much concerned about stopping & starting as I am riding. My left knee seems to have issues, and visions of how I broke my ankle last January keep coming back. But I can't let that stop me.

So, we had the warm weather, even got up to close to 70 once or twice. Really nice! But mother nature wasn't through with us. So yesterday it dropped back down in the mid 20's to mid 30's and they predicted snow flurries over night. We didn't seem to get them, but I did see it spitting snow this morning. Not enough to run my windshield wipers but enough you could see it. So we are back to damn bitter cold and I don't like it. My knee doesn't like it much either. So I guess I'm back to riding my bike inside the house. Or else wrapping up really well and trying to brave the wind. Even without a wind, you still pick up quite a breeze riding.

I'm more than ready for winter to go away and spring to stay.

Cat fun

2011-03-21T11:25:00.002-04:00

I posted some video of the cats (well Sonny) playing with the red light. Ruby has no interest what-so-ever and doesn't get what the fuss is about. The other two, seem to enjoy playing. Sonny especially. We got the laser light in hopes that we could help Ziggy become more active. He is getting older, he will be 10 this year. And he is overweight. The vet had said not to worry too much about his weight as long as he seemed active, happy, etc. However I know that with cats, as with people, carrying too much weight is not a good thing. And we have noticed that he is starting to have trouble jumping on the bed. So, in order to help him, we have put the cats on a diet. We were using self-feeders, which is very convenient - for us, and for "piggy" to eat as much as he wanted. Ziggy is the one that has a problem with over-eating. Ruby is if anything underweight. Sonny is very close to ideal weight for his size. He also likes to eat a lot, so he could end up with a problem if he doesn't get enough exercise.
So how do you put 3 cats on a diet? Well, I researched on the internet (google is my friend), and decided we would get food that is for overweight adult cats, and mix in with their regular food. It isn't good to suddenly switch foods without allowing a period for their systems to get used to it. We moved the food upstairs to the kitchen where the water bowl is. Instead of leaving the self feeders out all day, we are now monitoring how much they are eating. And we are limitting the treats.
Exercise is also important. So I bought several toys to try to see if I could get them motivated to play and run around. The laser light is a big hit! Both Ziggy and Sonny will run around and chase it - especially if the room is dark so the light shows up that much more. The light is motorized so you can turn it on and set it down and it will flash the light around the room, but they seem to like it more if we move the light. It becomes more interactive that way. Sonny really loves it. M thinks that maybe he is still young enough to need something like this to help him come out of his shell. Plus there are times that we hear him going around the house crying looking for someone to play with him. Ziggy plays with him, but then gets tired out before Sonny does. So I think the light is helping Sonny as much as Ziggy, even though the original intent was to get it for Ziggy. Ziggy will run around like crazy chasing the light for a few min, then we can tell he gets worn out and flops down, and then just watches. M says it is age and the extra weight. Ok, so I can relate.
Ziggy is my buddy. If playing games with him and putting him on a diet will extend his life and make it more enjoyable then it is more than worth it.

Sonny playing RED light

2011-03-20T13:26:00.006-04:00

Video of Sonny playing with the red light. This is our cats new exercise program.

words

2011-03-15T11:36:00.001-04:00

I've had several recent conversations about words. A email list I participate in was discussing words. The list is partially made up of authors and a couple of them were discussing the use of "old time words." The list also includes several teachers, and they were talking about how the youth of today has no idea what some words mean, and how "honors" or "AP" classes no longer mean much, and whether or not they do or should filter the words they use. Several of the teachers said they sprinkle in large words in an attempt to broaden their students exposure to words.

I like words. I've always thought I have (or had) a pretty large vocabulary. I still think I do, but I now find I sometimes have more difficulty locating the word I am thinking of. I know what the word is, I can almost see it, but it just slips through my fingers. So Frustrating!! why can't I think of what I'm trying to say anymore?

Some of the words that were discussed in the various conversations - curmudgeon, mulling, plushies (or stuffies - meaning stuffed animals), umbrage, individualistic, refute, sensationalistic, and the list goes on. I like words....

If today's society, (and it isn't just today's youth) is not using words, is it because they are too busy texting, and using text-speak shorthand instead of real words? Is it because no one reads anymore? Or has a real conversation? That is sad.

Brain injury causes man to play piano

2011-02-25T09:39:00.000-05:00

I came across this clip, and found it interesting. This guy, David Amato, was playing around with friends and had a near fatal concussion from hitting his head in a pool. Before the accident he had never played the piano.

The mind is an amazing thing.

mad cow... tedious number crunching.... PC means more than politically correct..

2011-02-21T15:25:00.000-05:00

We were in Germany (West Germany, before the wall came down) for almost 3 yrs. Long enough that I can't donate blood if I wanted to. Something about possibly being exposed to mad cow. Lovely. So, in 1985, my daughter J was born, and it was time to come home. Back to the states. As I mentioned, the marriage didn't last, so that was over about the same time. That is it's own long story, and sounds to much like one of the movies of the week to be believable, so I won't go into it for now.

So... it was then time to come back to the states. Now I'm a single mom, and art doesn't pay that well.

My parents generously allowed my daughter (8 mos old) and I to go back home and live with them so I could go back to college. This time round, I gave up on the art idea. I decided I was still interested in the computers, but wanted to ditch the science so switched to computer information systems, which is more the business side of computers. A lot of the credits I took before transferred. And I discovered that with just adding a couple more courses I could get a double major in CIS and Accounting. Before graduating I got a job with a regional accounting firm, and was offered a full time job there after graduating. One thing led to another and I got my CPA (certified public accountant).

Career #2. I also got to wear the additional hat of being the network administrator at our firm, so got to do both accounting and computers. Quite honestly I didn't really enjoy the accounting side of things. tedious work. often boring. Number crunching... audits... balancing books.... taxes.... None of that really interested me.

Flash forward almost another 10 years, and once again I end up planning to move because of love. My daughter is now 9 and we move 1000 miles away without a job. Oh, I had looked, and even had one decent offer from another accounting firm but just prior to finalizing the move, the accounting firm was bought out by another firm and my new position no longer existed and the guy that had offered it to me was also out of a job. Go figure. I think it was a blessing in disguise. Did I mention that I found accounting boring?

I took a chance on love, and luck, and packed up and moved. Went from living in a small town where everyone knows your business located in the midst of the bible belt, where I had my folks nearby to help with my daughter to a town where all I really knew was my gf. Sound scary? It was a little. It was also freedom. Freedom to be more of who I am, and not have to worry or feel uncomfortable in my own skin.

My brother says I'm lucky. That he would never have the guts to do some of the things I've done. Things always have a way of working out. And they did.

So I moved without a job, to live with my gf. I had my car and a little bit of savings. My gf was paying the bills, she owned her home, and we weren't that much extra expense. And I set out to find a job. I couldn't find anything in the accounting world, but I did find something in computers. So I took a job working at a local computer shop. Started out doing PC and printer repair and occasionally working on servers. I guess this was was the beginning of career #3. I didn't make a lot. It was a big pay cut going from a CPA to a computer tech, but I enjoyed it. The company liked me. Liked me enough that when I went to them asking if I could take about 6 months leave of absence (without pay) they agreed to hold my job for me when I came back.

As I mentioned in a prior post, I took an almost 6 mos break from working back in 96 in order to travel the US in an RV with my daughter and my gf. My gf was taking a sabbatical from her teaching job, and we went along for the ride. We home-schooled my daughter, and I think it was one of the most awesome experiences either one of us could have. How many people can say they spent 5 months or more travelling the country? That wasn't a career, but it was certainly experience. I was telling someone about it recently and they made the comment about how you must really have to love someone to travel 5 months in an RV with them. Well, yeah. Actually, the relationship didn't last. Perhaps that was part of it. Although it was on the rocks before we left on the trip. We went more as friends than as lovers. And if I had it to do all over, of course I would.

Art where for art tho? what happened?

2011-02-18T17:04:00.000-05:00

My first real career was in art. ...

To continue my earlier post regarding going nowhere, The next thing I was good at was art. I could draw. I started college as an art major. I was good at drawing/painting. I was also interested in computers but this was before PC's existed so it was a different world. I wanted to find out how to get involved in a career doing some sort of computer animation. My college had no clue what to do with me, but for a while I was a dual major Art & Computer Science. yeah OK whatever. It didn't really mean anything back then.

So I thought I really liked art better than the computer science. Especially the science bit. To my dad's horror (he was a biology professor) I wasn't that good at science, and I really wasn't that interested in learning Latin names for everything, and physics kicked my butt. Strange because I aced calculus without trying... but I digress. I was good, no great at art. However, I almost flunked out of a life drawing class because my drawings were too realistic. I got a D in the class. My teacher said that photo realism was out, and that I needed to learn to be more abstract. Not sure what that has to do with life drawing, but it was a life lesson. LOL.
Not long after that I fell in love. as M would say now, I was young and dumb. He was in the military and got orders for Germany. So obviously, young love's response was that oh no, we can't be separated for a year or so, so our answer was that we must hurry and marry and then I can go along. Well, the marriage didn't last, told you I was young and dumb. But I won't complain too much about it. I had an incredible opportunity and experience getting to see West Germany, parts of Europe, and my daughter was born over there. Other thing I did over there was that I got a job as a head of a graphics art department for an army club system. I designed flyers and posters and put out a monthly magazine. I got to be an artist. The job required a college degree that I didn't have. But I was the most qualified applicant. At least I had gone to college, and they liked my portfolio. I also did free lance painting - commission work. I painted several murals around town, in some of the barracks. Big huge murals on walls. Also did some smaller framed commission work. Even won an award from the army divisional commander. So my first real career was as an Artist (luckily for me, it paid well, so I was not a starving artist either).

I don't know what happened to the artist me. I haven't touched a paint brush (house painting doesn't count). I haven't picked up a charcoal pencil or done a pen and ink. My favorite mediums were pen & ink and colored charcoals, and a mix of the two. But I haven't drawn anything in years. The artist me got lost over the years much like the musician me. But I don't have the excuse that I have when I say I can't make music if I wanted. I could still draw or paint if I really wanted. So what happened? Sometimes I think that aspect of myself is somehow tied to much with who I was back then. I don't want to go back and revisit that time. I have some of my old drawings and paintings. For the most part they are stored away. I've thought of getting them out. But then that always leads to questions. Did you do these? Really? oh but you have so much talent... why aren't you doing something with it? why did you stop? And I don't have those answers. I don't know why I stopped. And I don't know what to say.

exclusive retirement homes - not welcome

2011-02-16T12:22:00.000-05:00

I was going to continue my post from yesterday, and I might still get back to that at some point. But one nice thing about not having a "readership" or following, I can skip around and let my thoughts go wherever they want, and no one complains that they had trouble following.

I read a post this morning on someone else's blog about retirement homes. And it reminded me of something. Back in 96 I spent almost 6 months travelling the US in an RV (more on that story would have been in installment 4 or 5 if I'd continued on with yesterday's post). One of the places we visited was in Arizona. I forget the exact name, but near Phoenix. As we were travelling we would research and stay at various campgrounds, and my then partner found this lesbian only campground/trailer park that was set up for retired women only space. There was a fairly large population staying at this park, and there was another women only park just down the road. Both had similar rules and restrictions. The premise was this was a space where women could live in a RV community, park their RV or in some cases a mobile home or a park model, during their retirement years. The place was women only, men were not welcome on the grounds. Even children were frowned upon and only allowed during certain "daylight" hours, and could not be out running around even then without being with an adult. They had organized dances, and card games, and other community events. While we were there they were having one of their dances and the park down the street was hosting the dance.
I found the place disturbing. Partly because we were there with my daughter who was 10 at the time. Partly because it was so exclusive. My partner thought the place was great. And would have even considered buying into it except for the fact they didn't allow men visitors at all, and she was very close to her brother, not to mention all the neices/nephews that her sisters and brother had. I think she was ok with the idea of restricting access if it didn't have to apply to her.
The one highlight/memory I have of visiting that place was meeting the woman who was living in the RV next door to our site. Her name was Elaine Mikels, she was in her mid-70's, and an amazing interesting woman. She had just recently written a book about her part in the events during stonewall. Both my partner & I ended up getting a version of her book (she had two different editions) and having her sign them. At that time she was splitting her time between this place and Sante Fe NM. She seemed to prefer Sante Fe. She was also opposed to some of the more extreme views and rules/restrictions that were in place there at the campground. For example she thought it was a mistake to restrict access to both men & children. Children she felt are our future.
Some things I think are great to participate in a "lesbian or GLBT" space/atmosphere. But I wouldn't want to live year round in a place that was so restrictive. I have enjoyed vacationing places where gays are openly welcomed. Where it is ok to walk down the street holding hands, or to kiss your lover without fear. But then again those places do not exclude anyone. Other than maybe bigots. And I'm not sure they are excluded as much as that isn't any place they want to go or would feel comfortable at. I remember several years back talking about a vacation I was planning to P-town (Provincetown, MA) with some coworkers. One of them made a comment warning me that there were a lot of "lesbians & gays" there and to watch out. Obviously he didn't realize he was talking to one. LOL

going nowhere

2011-02-15T16:26:00.000-05:00

I have a job. A very good, well paying job. I work as a network engineer, managing/designing/maintaining computer networks. No, I don't work with computers, or users, or printers, etc. I work on the network. The routers, switches, firewalls. I work for retail. So next time you are in a store somewhere and the clerks are complaining the network is down, or slow, then someone like me has probably been called to work on the issue. Much of the time when it is stores that are down, there is a telecom vendor involved, and data links or the WAN is down, and it is up to the vendor to resolve.

I also work on VOIP systems. We have our own customer call center (to support outside customers), and a help desk call center (which supports users at stores, or corporate, which supports internal customers). The help desk escalates issues to my team if the issues are network related and the help desk can't resolve. VOIP technology puts the phones on the network, and merges both the world of computer technology and regular telephone technology. Our telecom group is new to that whole idea. So I work with them because I have background in it.

I'm a key employee, and have lots of specialized knowledge and experience. Sometimes I think I know lots about a lot of things, but not about any one thing. However, while it might sound conceited, I know a lot more about most of the things I do than anyone else here. I also think that I've gone as far as I can career-wise. I am not a manager, or supervisor. I am a team lead and have people under me, but they are not direct reports. I'm not even sure I would want to be in management. Management can be so political and such a bureaucracy. I think I prefer to work on things and solve problems and design things. I'm not sure I would be able to do all of that and be effective in management. I'm also pretty sure I wouldn't even like being in management.

I'm thinking about some of these things because a good friend/coworker was just promoted to manager of her dept. She was a lead much as I am, only with the DBA team. Her manager will be leaving, so they offered her the position. I don't see that sort of thing being an option in my team. I am fairly certain that my boss is going nowhere, and neither is his boss. Also another good friend recently took a new job within her company and is now a manager of her division. She talks about how she likes, no loves her new job. I like my job, but I don't love my job. I used to love my job when I worked for the company prior to this one. But it was privately owned, and the family decided to sell it off, resulting in a lot of people including me being laid off. It wasn't as bad as it sounds, I got a decent severance and a key employee bonus to stick around until the company dissolved. I was lucky to find this job, and have a smooth transition from one to the other without being without a job in the middle. But this time it is just a job. Not a job that I love.

So am I going nowhere? I guess I'm trying to decide what I want to be when I grow up. I've re-invented myself several times in this life. When I was young, I taught music lessons for decent money, that and did some baby-sitting. Teaching banjo lessons was a lot more lucrative than any other job for a 14 yr old - I made $25 for 1/2 hr session. I was good at playing/singing. Not great, but good. Banjo, guitar. I had fun with it. I also took piano lessons for several years and could play that. Now (for some years now) I can't play. My brain can't process reading music anymore. I can read it, but it is like translating a foreign language, into another language and then from there into a 3rd. that's the best I can explain it. I can look at the music and think about it then, tell you what the note is (a,b,c,d,e,f,g etc), then look at it and figure out the rhythm. but to put it all together? Even when I was young I played much better by ear than sight reading. As for pickin' a banjo, or guitar, my hands wouldn't cooperate now if I remembered what to do. My fuzzy fingers on my right hand would complain if I had to play for very long, and I'm not sure I could work my fingers to pick the way I used to, or even do the cords with my left hand. As for the piano, I lost all memory of how to read/play the bass hand. I can pick out a melody with my right, but to put the two together? forget it. I think it maybe partly MS related. Or maybe it is just result of some other brain injury from the past. I still love music though. And I can still sing. J & I sing together in a local womyns chorus. Music is something I've always felt close to, not that I ever would have been good enough to really make any money at it.

My first real career was in art...

Furry Friends

2011-02-13T21:34:00.001-05:00

Cats Cats Cats... for the Cat lovers out there...

2011-02-10T17:26:00.000-05:00

This post is dedicated to my cats... I'll add photos later.
We originally had 4 cats, 1 dog. Now we just have 3 cats.

Coot, may he RIP, was the alpha. Neurotic, slightly psychotic, but lovable Coot. Coot was a silky (very silky soft fur) black cat with a white chest and paws & whiskers. He was our tuxedo cat, all dressed up, no place to go. Coot was a worrier. He worried about everything and everyone. If the cat's food container (self-feeder) was low, he would cry and let you know. If the Dog's water dish (the cats shared Hunters large water cooler/watering dish). was low, he cried about that. If coot was crying, something was wrong. You would ask him what's the matter, and he would lead you to the problem. Stand by to make sure you fixed it, then he would leave. It wasn't that he wanted the food or the water, he just was afraid it was going to run out. He even did that when Hunter's dry food would get low. If Coot was crying, it meant something wasn't right. He wouldn't stop until you went with him to fix it. He would cry if someone got trapped in the laundry room. Even Ruby - his nemesis. He was the old man. A year older than Ruby. When M & I moved in together my daughter J & I brought Coot & Ziggy. M brought Ruby & Hunter. And then J felt sorry for this scraggly flea ridden kitten and paid the adoption fee and we ended adding Sonny. J & I had gotten Coot as a kitten, when some friends found the bedraggled wet kitten that would fit in the palm of your hand out in the rain outside a convenience store. Our friend already had 2 cats, and couldn't take on another, so we took him. Coot had grown up around dogs, when he was a kitten my partner at the time had 2 labs, and Coot was unafraid. As a tiny kitten you might find him up under the chin of the big yellow lab trying to get to the gravy in the dog's bowl. Luckily all the dogs Coot (and the others) have been around were all gentle giants. Besides being a worrier, Coot was nervous. Besides crying to let us know when things weren't right, if he got too upset, he would get dandruff really bad. Which with his black silky fur was very noticeable. Coot was a sweet kitty, I miss Coot. For that matter, I miss that old yellow lab too. I was there and watched both (at different times obviously) take their last breath. I was alone with my partner's old yellow lab, she couldn't deal, so I was there for the big guy. For Coot, we were all there - me, M & J. All crying and reminiscing about happier times & happier memories.

If Coot was the old man, that makes Ruby the old lady. Ruby is a calico tabby cat. Dark rusty/brown color, some stripes on her tail, otherwise mottled. White chest, paws & face. Sort of dainty but tough as nails. Don't mess with Ruby. That goes for human or animal. One minute she can be purring and demanding you pet her, next she'll swat you to let you know you should have stopped that - didn't you get the secret signal she'd had enough? Ruby and Coot had some sort of love/hate relationship going. They would hiss and fight. For some reason, Ruby would get behind the bedroom door, swatting at Coot out through the crack at the hinges. He would sit and box back at her. They also like to fight for who got to be on the bed. Coot was declawed, so he had no front claws. The rest of the cat's have claws. So Ruby had the advantage. But Coot would still wop at Ruby with his paw. He packed a mean punch. Normally Coot would end up chasing Ruby off the bed, then he would lay up there. He was getting older, and while he would sometimes exhibit signs of acting like a kitten again, he normally didn't want to play with the younger ones - Ziggy & Sonny. Ruby doesn't like any of the boys. We aren't sure that she likes anyone. Normally while Coot was alive, he was the only one that really fought with Ruby, on a couple rare occasions, Ziggy joined in, Sonny was a bit clueless. As I've mentioned before, something is wrong with Ruby's meow. She can get loud when she really wants to, as we have heard her when she got trapped in the laundry room. Most of the time tho, the best she comes up with is a faint "meep" sound. Otherwise you can watch her mouth open and shut but no meow comes out. Like she has permanent laryngitis. Although when Coot was still around and Ruby would get shut in the laundry room, Coot would be sitting outside the door crying, Ruby would be quiet. If didn't hear Coot, he'd come looking for us and lead us to her. Timmy's in the well... you need to come help NOW. Told you it was a love/hate thing. Is Ruby the alpha female? she's the only female. I'm not sure I'd call her alpha. More likely crotchety.

The cats love to follow us in the laundry room and will sometimes hide and get shut in there when we shut the door. All cats seem to have a door alarm. Even if they are in another part of the house, they know if you go in a room (bathroom?) and shut the door, and will immediately appear outside said door and cry and stick their paws under the door trying to signal to you that they are there and that help is on the way, soon as they figure out how to get that damn door open... Cabinets, now cabinets they can open. Just so you know, they can open all the cabinets, weave in and out and around all the pots and pans and anything else you have in there. Normally they don't, but they can. Just in case, we always rinse off the pots/pans. But the doors, can't quite get those door knobs to turn. That proved a problem once. M & I had left on a week long vacation and taken Hunter with us. J was stopping by the house off and on checking on the cats. With plenty of water and self feeders out, and clean litter boxes, they are usually good for a couple days on their own. Sometime between when we left on Friday and J showing up on Sunday, however, all 4 cats somehow shut themselves in our bedroom. This was odd, in that Coot & Ruby had managed to get the door shut before while boxing with each other, but normally Coot is outside the door when this happens. But this time all 4 were in the bedroom. This could have been really bad. Or well, worse than it was, I guess being stuck in a bedroom for possibly 2 days without food or easy access to water isn't a good thing. Our bedroom has a full bath attached, so they could drink out of the toilet if necessary, and the cats used our walk in shower as their bathroom, and left a few presents. As I say, could have been a lot worse. The shower was much easier to clean up than if they peed/pooped in the bedroom. We aren't sure how they came up with the idea, but could tell they'd all used it. After that incident we started blocking the bedroom door so nothing similar could happen again. That was really the only room that it was an issue, and that was because of how/where the door is.

Hunter was the next oldest. He was a large sweet dog. Rarely barked. Was a very good dog. Definitely a gentle giant. His mother was golden retriever, not sure about the rest. It was claimed the father of the puppies was a Rottweiler, but he didn't have Rottweiler in him, they are stocky. He was almost as large as a Great Dane, had a running dog's build, and loved to stretch those legs. He was fast. The vet said he might be part Irish Setter. He had short reddish hair. He looked a little like a very large Vizsla. He got along well with the cats. He and Coot became very good buds, Coot would walk in and around Hunter rubbing all over him. Hunter wanted to play so bad with the cats that sometimes he would try to put his paw on them, coot especially and he would yelp, and we'd have to fuss at Hunter to leave the cat alone, then there would be Coot right back over there beside Hunter rubbing all over him. Sonny also was a big pal. We think Sonny thought he might be a big dog too. When Hunter would get a treat or table scraps, like a piece of steak, Sonny was right there wanting a piece too. Course we had to give Sonny a much much smaller piece, but he seemed to always want whatever the big guy got. Sonny also tries to make a sound like a woof.... more like mouf... Hunter always had dry food sitting out, and also got one can of wet food a day. He especially liked the kind with gravy. Problem is that the cats also really liked the gravy. Many times, we would put out Hunter's food, and he would come to us and lean against us whining, and the cats (especially Coot) would be on their hind legs licking the gravy off the food in Hunter's bowl. Hunter could have gone over and growled or barked or scared the cats off, but no, he would come whine to us like he was saying "the cats are eating my food again.... cant you do something?" To solve the problem we got a second bowl, and would pour a little of the gravy off into the "cats" bowl, then put the rest of the can in Hunter's dish. Made everyone happy. And whatever the cats didn't finish up, Hunter would later.

The cats have a pecking order when it comes to eating. However, they take turns. When Coot was around, he was often first. Then either Ruby or Ziggy and Sonny. Now that Coot is gone, sometime Ruby gets there first and Ziggy will wait until she is done, or Ziggy will be first and Ruby will wait. No real rhyme or reason. Sonny, our special needs kitty, he eats when he wants. The others will let him. They seem to all know he is special. Ruby will fuss a little bit, but let him go out of turn. Ziggy will just share the bowl with him. Same with the water dish. Now when they used to share Hunter's water bowl, they never shared at the same time with the dog. but because the bowl was large, it was easy for more than one of them to drink at the same time. Now they have a smaller "cat sized" bowl which is really too small for more than 1 but sometimes we will still see both Sonny & Ziggy trying to drink at the same time. Another difference now they no longer have the large water bowl is that the floor doesn't stay as wet. There were two reasons for the wet kitchen floor. First was Hunter, he would slosh water, and leave a trail after taking several gulps of water. So you had to watch out for the patches of dog slime. The 2nd reason was Ziggy. He likes to drink from his paw, and will sometimes splash water, we sometimes wondered if he was doing it for fun, or trying to skim the dog slobber off the top of the water before he drank. We think mostly he just wanted to play, because we would catch him slinging water at Sonny or at Hunter. For some time Hunter was blamed for all the wet floor issues until Ziggy was caught in the act.

Ziggy is our little grey tiger. Ok, he's not so little. Over weight actually, although the vet did say as long as he is active, jumping and playing not to worry too much. He can jump and he plays. So for now, we haven't changed the means of feeding the cats. To put Ziggy on a diet would mean they all get put on a diet and we would have to take away the self-feeders and make sure they all got their dinner. As for Ziggy's jumping ability, not long after we moved into this house, we found him on top of the top kitchen cabinets (up over top of the refrigerator by about a foot 1/2. We guess that he got up there by jumping on the counter top and from there to the top of the fridge and from there to the top of the cabinets - unless he went from the counter to the top of the cabinet directly. That's really the only time we found him up there.... he just wanted to see what the view was and whether there was anything worth checking out. Ziggy is a lover boy and loves to snuggle and is very social. He's best pals with Sonny. J and I got him as a small kitty and he bonded instantly to me. He is my boy. He will be social with anyone but he is definitely attached to me. He is very playful and has a mischievous streak. He is very gentle when he plays, and rarely puts his claws out. Even the vet has commented on it. We believe he learned to play keeping his claws in because of Coot, who was declawed. After all using claws wouldn't be fair when Coot couldn't. Only rarely if you are playing with Ziggy will he barely put his claws out sort of as a warning.... but not enough to really do any damage. He does the same thing when you are petting him and he doesn't like something you are doing, or he might "fake bite" you, put his mouth on you, without actually biting down. Just long enough so you get the idea. Ziggy was always Coot's pal. Whenever we needed to take Coot to the vet, we often would end up taking both Ziggy & Coot (in the same cat carrier) because it would help make Coot feel better and less worried. Later, as Coot got older he didn't want to play as much and Ziggy bonded more with Sonny and took Sonny under his wing. Ziggy is also our attack cat. Early warning alarm system. If strange people show up (as in complete strangers, repair men, UPS drivers, etc), or if strange vehicles pull into the drive (or we have discovered lately he reacts even if a delivery truck pulls into the neighbors drive), then he growls. Yes, he growls. I first told M about it after we moved in together to let her know, if she heard Ziggy growling that it meant we probably had someone pulling in the drive or something wasn't right. She responded with a yeah right, cats don't growl. Now Hunter would bark if a strange dog, or rather a strange big dog (he seemed to think little dogs were maybe cats) was around. He would bark if you left him outside too long. And if someone strange was outside in the middle of the night sort of thing. Otherwise he didn't bark. He didn't bark if we had repairmen coming to fix things... He would scare the repairmen because he was big, and he would be straining against whoever was trying to hold him back... because he thought all visitors to the house were there to see and pet him. But even if Hunter didn't always bark or growl, well Ziggy would. First time M heard him, she told me (surprised) Ziggy does growl... yes. really. ferocious little tiger he is. Course I'm not sure what he would really do if there was danger or the danger came in the house, maybe run to the treat cabinet and hope the thief was breaking in to give the cats treats? no, but seriously I do think Ziggy maybe would do what he could to protect us. Especially me. Not sure what he could/would do, but he'd try, least that is what I believe.

Sonny, is a long haired, part Maine Coon cat. Yellow. His fur is yellow/orange with faint stripes, and he has a white chest and white paws. And he is Yellow. A big scaredy cat. Did I mention big? He has enormous paws, he is much bigger than the other cats. He isn't fat, just big. Apparently Main Coon's get big, and he isn't as big as some of them I found on the Internet. He's also a big coward. Afraid of noise, his shadow, sudden movement... As I mentioned, J picked out Sonny when we first moved into our house. He was still a kitten but several months old. With long gangly legs, and scrawny. Very awkward. J says she saw him and was afraid no one would adopt him and that she felt the need to do so to make sure he had a good home. Nothing like bringing a 4th cat into a household that has just blended 2 families. A dog & cat, plus two cats, plus sonny. Poor Sonny was odd man out. First thing we had to do was isolate him in one of the bathrooms until we could flea dip him and make sure the fleas were gone. We did not want to have a flea infested household! We took him to the vet to make sure he was up on his shots. The vet told us he was a short hair domestic cat. Yeah, ok. In the beginning, none of the animals wanted anything to do with him. He wanted to play. He was able to pal around some with Hunter, but the cats didn't want him around. In fact, the other cats would torment him. As he grew, we discovered he is not short haired. He has soo much hair, he has tufts of hair growing out between the pads of his feet. His pads never actually touch the ground. Which makes him slide easily on the linoleum. The other cats figured this out. Our house makes a circle where you can go from the living room to the dining room to the kitchen, out the other side of the kitchen back in the living room, completing the circuit. The house is carpeted except for the kitchen, the landing (we have a split level) and the downstairs hallway and the bathrooms all have linoleum. The other cats discovered they could play chase with Sonny and lead him through the kitchen from the dining room and they could turn and run out the doorway to the living room, and Sonny couldn't make the corner and would slide into the kitchen table and chairs, BAM. Perhaps that is one reason Sonny is a special needs kid - too many BAMs. But really Sonny isn't so dumb. He learned to skid into the turn. Looking much like a little kid on a skate board, he knows just when to slide and lean and make the corner and can now fly through the kitchen and out the door no trouble at all. He does the same thing running down the stairs making the corner on the landing and down the rest of the stairs and around to the cat room. After we had Sonny for a few months, he started filling out some and growing into those gangly legs. He is still awkward (probably always will be), he has huge paws, and is a bit of a klutz. As he filled out his hair grew. Besides the tufts growing out the pads of his feet, he has tuffs coming out his ears, and has what looks like a lion mane, a fluffy feather duster like tail, and so much fur that M says he always looks like he is running with his pants falling down. We don't have any proof that he is Maine Coon cat, but we are sure he is NOT a domestic short hair. I did some Internet searching and found out that he has all the indicators of being a Main Coon after a friend suggested he might be one. It wasn't long after we all started to get settled in the new house, and all the animals started getting used to each other that Ziggy & Sonny started palling around. Ziggy took the kitty under his wing, and would snuggle with him, groom him, etc. Animals are funny though. We took Sonny to the vet and he stayed overnight when it was time to have him fixed. When he came home he smelled different and Ziggy wanted nothing to do with him. Would just hiss and spit at him. After a day or so, he realized it really was Sonny and all was ok again. Sonny is fine around the other animals, and can even be brave when it comes to taking what he wants - like food etc. but when it comes to people, that's when he is really a scaredy cat. Strangers, loud noises, etc. Sonny runs like a yellow blur down the stairs to the cat room. Sonny has so much fur that we started taking him to the groomer to have him shaved. If not, his fur will get so matted that it isn't healthy for him, and he won't hardly let us brush him or help him take care of it. So J will come by every 3-4 months and help grab him and put him in one of the cat carriers and take him to the groomers. They give him a "lion cut" which leaves his mane and a fluff on the end of his tail, and makes him look that much more like a little lion. The groomer say he is very sweet. They wanted to know if he was nervous (you think? Mr. cowardly lion, nervous?) - apparently they said he chews his nails. Which is much like in humans. We knew Coot was nervous, he had dandruff that would flare up when he was upset. Sonny, he jumps when you make sudden moves, or if he hears loud noises, or if strange people come in the house. Or for that matter if any of us open the front door. Think he associates the front door with strange people coming in the house since we all mostly use the garage.

Our "cat room" is a storage room at the bottom of the stairs that has a cat door cut in the bottom of the door. Besides being used for storage it is where the litter boxes and cat food is kept. Main purpose was to keep it out of Hunters reach. Unfortunately dogs think cat poo is a form of delicacy... we will leave that thought at that.
After Coot was gone, the cats had an adjustment period where they all figured out their place in cat society. Well except for Sonny, who appears to be exempt. If you watch them, you can tell they (all the animals) just make allowances for him. Ziggy became a bully. It appears he feels it is his place in life to make Ruby's life miserable. To follow Coots footsteps and keep Ruby off the bed. Ruby is not having any of it. Normally Ziggy snuggles with us at bed time. Often wants under the covers and snuggles in. Otherwise he snuggles with Sonny at the foot of the bed. Ruby likes to sleep by M, or up on her pillows at the top of the bed. It is a king, so there is plenty of room for all the cats and us. Ziggy will chase Ruby off then sit at the bottom scowling and guarding the bed so that she can't get back on. Sort of an example of cutting his nose off to spite his face because he can't get any attention down there, doesn't get to snuggle in, but guess he's happy because he is keeping Ruby away.
Another thing that has changed since Coot & Hunter have gone is Ziggy's behavior after I leave and come back. Before if I had to travel for work. He would be so upset and pissed at me when I would get back that he wouldn't have anything to do with me for several days. He would make sure he was in the same room noticeably ignoring me. Not come when called, and not want me to pet him, etc. Now, if I leave, then when I get back he won't let me out of his site, and wants to be glued to me like a furry tumor. It takes a few days before he relaxes and goes back to normal.

So.... that's our furry family members. We wouldn't take any thing for any of them. And most definitely miss the ones that are gone.

shaky shaky meow meow

2011-02-07T11:16:00.001-05:00

The cats have a new ritual. They have a toy mouse - not new, they have had it for a few years, but never paid any attention to it until now. They have several toys. Which they carry to different parts of the house and leave them strewn around like a toddler with their toys. I think part of this is because we no longer have the dog to "eat" the toys. Hunter loved to shred anything stuffed. And if it wasn't stuffed he would slobber it and no cat would be interested. So I think now that Hunter isn't around to bother their toys, they are now feeling safe at carrying them around and leaving them out in the open.

Ruby likes to carry a couple of the stuffed toys - a catnip caterpillar worm thing, and a hedgehog, and then cry over them like they were her long lost kittens. First time I heard her do this, I thought she was in pain, or something, she sounded so forlorn and pitiful.

Ziggy and sunny like to carry a couple of the stuffed mice around and leave them, brave hunters that they are, where you will find them and step on them in the dark. I guess it is good we don't have mice, or we might find real ones left for us to find. The closest they get to actual hunting is bugs. Amazingly enough (least to me) is that they can catch them and kill them. Ziggy is very intent and serious hunter. Sunny is spastic. He's our special needs kitty. Ziggy will stay crouched ready to pounce for long periods, Sunny will crouch beside him, watching him, and imitating, for a couple minutes, then forget what he was doing there, and sometimes will try to get Ziggy to play with him, but Ziggy will be intent on the hunt, and then sunny will suddenly remember what he was supposed to be doing and then crouch down again, like oh yeah, I forgot... we're huntin'.... be vewwy vewwy quiet, we's huntin bugs...

The new toy of interest though is a mouse that sounds like a bean bag when you shake it. Couple weekends ago, I was trying to nap (I find I like napping on weekends - it allows me to catch up on sleep I miss all week). Ziggy however did not want me to nap. He wanted me to appreciate that he had this toy mouse. He was grabbing the mouse shaking it so that it rattled, then drop it, and meow loudly. over and over. he jumped up on the bed to present this mouse and repeat his routine. I was not impressed.

On Saturday night/Sunday morning, he played this game with M. She was definitely not impressed. She was working a mandatory OT shift at work on Sunday, daylight shift which meant getting up at 5am. She normally works 2nd shift, and is not an early morning person. If anyone asks if I wake up grouchy in the mornings, my reply is only if I have to.... I know better. Actually, I prefer staying up at night to getting up early, but I wake up fairly easily, and I am normally good natured when woke up. Not M. LOL. So Ziggy, doing his shake shake, drop the mouse, meow meow, routine at 3:30/4 in the morning early Sunday didn't go over well.

stumbling around

2011-01-31T19:32:00.000-05:00

For the past week I have been limping and hobbling around. Last monday I went to see my knee dr and got a shot in my left knee. I was originally supposed to get the first of 3 synvisc shots but when I got there, they told me "its your lucky day." Now considering my luck I should have been suspicious right then. But they told me that someone had scheduled getting a synvisc-one shot and cancelled and since they couldn't return the shot, they could give it to me for free. No charge for the shot or visit. So, I discuss the differences between the 1 shot vs the 3, I had major reservations regarding doing the 1 shot, because it was basically taking the exact same formula, and doing the shot all at once vs breaking into three separate shots. I was concerned because sometimes getting the amount in the 1/3 shot was a lot of pressure, but he said he would inject it in a little different place and that would give it more room, so I decided to try it out.

So I got the shot, and it wasn't too bad. A little sore that day - this is typical, usually the day of the shot is a achy and it takes a day or so before it kicks in. I went on to work, same with Tuesday. But then by Wednesday, my knee was killing me. I was hobbling around and could barely walk. M said she thought my knee was swollen, at that point I couldn't see it myself. We got snow, so I took a "snow day" and worked from home. Luckily I can do my job as easily from home as I can from the office. It is just preferred that we go in. Thursday, it was worse, so I took a sick day and even called back into the dr. said my knee was swelling, and achy and I couldn't walk, etc. Spoke to the assistant, and was told that maybe it was just because I did the one shot instead of doing the 3, that it was a lot more fluid and to keep it elevated and ice on it. I slept most of thursday, hoping to "sleep it off and feel better." That didn't really work. I asked about taking another sick day on Friday but was told that no... my boss and the entire rest of my team was already out on vacation, trying to get their last days in before end of year. So worked from home again. Was miserable most of the weekend.

M told me to start using one of my canes... which helped, not sure why I didn't do it myself. I think she is over me being home and hobbling. I'm not sure if it is that she feels a little helpless when I'm sick or "under the weather" or if she just finds it irritating. In any case she has become very irritable, and being irritable myself from being in pain, I'm having a little trouble being sympathetic.

I went back to the Dr this morning, they drained off over 10 cc's of fluid off my knee. Two huge syringes. The amount looked about 4 times the amount of that shot from last week. But it did make a big difference. The achy pain that was my constant friend, throbbing from my knee down into my ankle, keeping a beat all its own with sharp heart beats of pain radiating. actually I think most of the pain was down in my ankle. Think that is a good example of "referred pain". I tried most everything. Ice, heat, elevate, massage, hot tub, advil, vicodin, even alcohol. No not all at the same time. Though, if I had thought it might help, well.... I got the best relief from some pain relief cream that I would rub on my knee and down the back of my calf and around my ankle. Flexerall plus. It has a stronger smell than ben-gay, but unlike ben-gay it helps when I've had bad knee aches in the past. So Why not? I tried it. I think all it did was distract the nerves along my leg. But it helped.

Now after having the fluid removed, my leg no longer looks deformed. and the constant pain is gone. Did I mention that? That is huge! Big difference. my knee still aches, but instead of being a 9-11 on that 1-10 scale, it is now more like a 3. I can ignore a 3. sometimes it aches and the pain climbs but again, it is bearable. I'm hoping I will be able to sleep tonight. I haven't slept much the past week. My knee kept waking me up, I couldn't find a comfortable position. You know, you keep moving hoping to get situated so the pain goes away or calms down, but it wasn't happening. Sometimes it felt better moving than stopping. But it is hard to keep moving and sleep. So my sleep was disturbed. Which meant I disturbed everyone else. Perhaps that was why M was irritable? lol

I even disturbed the cats. Ziggy hates the smell of the "old lady cream" as M calls the flexerall. Must be the strong menthol. He gets a whiff and runs. I should be more considerate of the rest of the family.

I think I will sleep good tonight.

winter blahs!

2011-01-31T19:06:00.000-05:00

I am so sick of the snow and cold weather. Spring will not come too soon. We have not gotten one big snow storm like we have in years past, instead this year it has been a day of 1-2 inches, followed by a cold spell (temps in the low 20's) then another 2-3 inches, then warms up to the upper 30's but not enough to melt the snow off the grass. Then another day of snow. It has been several days without snow, so it is time. Weather reports that it is supposed to start overnight and continue into tomorrow. Total accumulation of about 4-5 inches. Fun fun. Better rush to the grocery (market) and fight the crowds so you can load your cart with at least 5-10 loaves of bread and a dozen or more gallons of milk. Nevermind that we can rarely finish 1 loaf or a 1/2 gallon of milk before either go bad. It is a local LAW to buy mass quantities whenever they predict a big snow. Just watch the supermarkets and grocery stores - check out the people with carts full of both bread and milk. What do they do with all that? Ok, you can freeze bread, but I think it doesn't taste as good after thawed. But milk? what? make ice cream? what?

New Year Resolutions

2011-01-05T11:33:00.000-05:00

I have noticed a growing trend among friends and fellow bloggers of people that don't "do resolutions." Which made me think about what that really means.

From Webster's online dictionary:
Definition of RESOLUTION

1 : the act or process of resolving: as
a : the act of analyzing a complex notion into simpler ones
b : the act of answering : solving
c : the act of determining
d : the passing of a voice part from a dissonant to a consonant tone or the progression of a chord from dissonance to consonance
e : the separating of a chemical compound or mixture into its constituents
f (1) : the division of a prosodic element into its component parts (2) : the substitution in Greek or Latin prosody of two short syllables for a long syllable
g : the analysis of a vector into two or more vectors of which it is the sum
2 : the subsidence of a pathological state (as inflammation)
3 a : something that is resolved
b : firmness of resolve
4 : a formal expression of opinion, will, or intent voted by an official body or assembled group
5 : the point in a literary work at which the chief dramatic complication is worked out
6 a : the process or capability of making distinguishable the individual parts of an object, closely adjacent optical images, or sources of light
b : a measure of the sharpness of an image or of the fineness with which a device (as a video display, printer, or scanner) can produce or record such an image usually expressed as the total number or density of pixels in the image

Hmmm.... ok so how does that fit with making a New Year resolution? I guess choice 3 a) is closest to being an example of a New Year type resolution.

So anyway, what's the big problem with making a New Year resolution? I make resolutions all the time, all year long. I resolve to get more exercise, to pay more attention to what I am eating, and to try to get healthier. I resolve to get more sleep at night. Sometimes I am successful at whatever I resolve to do or change, other times not so much. Sort of like sticking with a diet, I have lots of good intentions at first, but then before I know it, I've fallen off the wagon, and start becoming hap-hazard and next thing I know, all those good intentions have sailed out the window.

But so what is so different about those day to day resolutions and a "New Year Resolution"? Only thing I can figure out is that by saying it is a New Year Resolution, we are somehow promising to stick to it, and promise to follow through not just "try" and are, at least in our own minds, somehow held accountable to not break them for the entire year? And just as those other day to day resolutions that I've made through out the year and failed to keep, I will fail at the New Year Resolution, and somehow it will be a bigger failure because it has the words "New Year" tacked to it. Sorry, I don't see the significance. Or is it because it becomes a more "public" declaration, especially if others ask what your New Year resolutions are, and you share? By publicly declaring you will stick to your diet, or get more sleep (to use my examples from above), and when you fail, then you become more of a failure because it becomes more public. Sorry, I don't buy that either. Oh I understand and accept others declarations that they "don't do New Year resolutions". That's fine. Maybe they don't do resolutions at all. But I will admit to myself that I do do resolutions. And I normally repeat the same ones over and over, and I break them over and over, but then I dust myself off and get back on track and start all over again with good intentions.
Call them New Year resolutions or not. It matters not to me.

travelling for the holidays

2011-01-04T17:35:00.000-05:00

My daughter and I flew to western KY to spend the holiday's with my mom on Xmas eve, and my brother and family drove in from mid-state (5 1/2 hr drive) on Saturday and left again on Sunday. Another whirlwind family get-together. My mom loved it. And was left completely exhausted. She seemed to be doing pretty good this visit. But that can be hard to tell. She is still complaining that it hurts to swallow, talk, basically use her throat. But she'll be ok. We flew back on Thursday the 30th, and then got stuck in Chicago (apparently high winds - hmm windy city?) due to delays. Airlines no longer give you free rooms if you are stranded. They offer "discounts", I'd hate to see what the normal prices of some of these places are. On the other hand, if I think about it, why should the airline have to pay for a hotel for me, when the flight was delayed by weather? Basically they chose to limit the number of flights that could take off or land at any given time due to the high winds. Which in turn caused some major delays and caused us (along with lots of other people) to miss their connections. So is that the airline's fault? I think it makes a little more sense to blame the airline when they just randomly cancel a flight, or they bump you without reason, etc. Last year we had an issue in Cincinnati trying to catch a connection, and went to the gate to be told the plane just left. I said, but I have 10 after, the flight isn't scheduled to leave until 20 after, and had the attendant tell me quite proudly that her monitor said 15 after. When I tried to explain how that still mean the plane left early, she shrugged and said it was already gone, and did I want help getting a replacement flight?
One of my main complaints with flying these days is that checked bags cost at least $25 a bag, unless of course you pay extra to fly first class - then you can get free checked bags (in some cases 3). Ok, if there is a problem with passengers taking too much and they need to limit bags, charging would be a way to do that. But oh, then you hear that they are having to add sand bags as ballast to even out the load since people aren't taking as many bags. Go figure. Then there are all the people that go through security lugging way more bags than the 1 bag plus one personal item (purse, pillow, etc). I guess there are a lot of people that don't know how to count. Also, these same people that can't count are the ones that have the "over-sized" carry-ons and have to gate-check them. Which is free. Which is why these people are doing this. Basically it is like checking a bag, only it is free, and you get your bag back at plane side when you reach your destination. Other advantage I guess is that if you get stranded like we did in Chicago, you got your bag with you. Ours somehow didn't miss our connection (even tho we landed when the other plane was supposedly taking off) even though we did. So we got to spend the night without our luggage. I carry a laptop bag with me that has my essential stuff in it. So I was ok.
We stayed in the Hilton at the Chicago airport - in the airport actually. Cost a little more, but to me it was worth not have to try to go out find and catch a shuttle for a 20 min drive to some hotel and be at their mercy to be able to get a shuttle the next morning and not miss our return flight. It already took us almost 15-20 minutes to walk from the airport itself to the hotel lobby, much less go on outside where the shuttle buses were. The hotel was nice. Not that I ever plan to go back to it. The main down point of the stay in Chicago was walking into an elevator just as a homeless man was exiting to discover he had just peed in the corner. Ewww. and why there? never mind I don't want to know. J wondered how he knew he could be finished in time before the doors opened... I don't know? practice?
M also had her own fun travelling over the holiday. She flew to SC to see W. Was supposed to fly out on Friday and return Monday, making it a 4 day weekend trip. She got stuck because of a connecting flight through Newark, and had her Monday flight rescheduled for Thursday, and then when it looked like it might be cancelled again, ended up having to get another flight home. She is holding her breath waiting for a refund on the original return flight. Which they did promise, so maybe. I think the worst part of her getting stuck was that she was staying with W and his girlfriend D and she got sick of hearing sales pitches for XANGO. The miracle fruit, cure for MS and anything that ails you, that I wrote about before. You don't sell the product, you just find 5 friends that will join and market it, and they find 5 friends, etc. The other issue was that D's cooking apparently left something to be desired, she said the meals were things that really sounded good, but every time she put any of it in her mouth she was disappointed. The other problem was that it was unseasonably cold in SC. And apparently W & D didn't feel the need to turn up the heat. M was talking about having to put socks on her hands to read so her hands didn't freeze. M doesn't normally complain of the cold.
Western KY is really not that far south of where I live in Central PA. But a lot of people from this area seem to believe I am travelling south when I mention going to see my mom. Now, granted if you listen to the accents of the locals, you will definitely hear a drawl. And like a lot of the south, they don't get in any hurry. But geographically, it is really more west than south. Temperature-wise it normally is within a few degrees of here. In fact, we had a white xmas (about 3-4 inches) which was more than here. In any case, I wish it was further south and that the temperatures reflected it. I am pretty much over winter time. Today was a "warm spell" - regular heat wave with temps climbing into the 40's. Feels a lot better than 20's and below. And this single digit stuff with the wind chill - it really has to go. I truly think my MS doesn't like cold. Maybe it is just me that doesn't like cold, but I like to think it is one thing that we agree on. Something we can both be on the same side regarding. I just really don't like the bitter cold. Especially damp & cold. I don't care for extreme heat either, but the cold just seems to do something to me. And plus arthur doesn't care for it either. So the 3 of us - arthur, MS & me all would greatly prefer if we were done with winter now please. My arthritis in my left knee has really been acting up. I saw the dr yesterday and talked about seeing another specialist to discuss a knee replacement. Hiking across the airport, riding my bike, stepping out in the cold. None of those things are much fun these days. So I think it is time. It isn't going to get any better. And the things that were helping (like the walking, exercising and riding bike) don't seem to be doing it now. So I need to take the next step and see what I need to know to plan.

Wonderfully Independent - another word for stubborn

2010-12-23T14:07:00.000-05:00

One thing I definitely get from my mother & dad is a stubborn streak. I like to think it is persistence or determination, but I know it is also stubbornness. Not that it is a bad thing sometimes to be stubborn. It has its place, and sometimes that is a very important place. Other times, well it just means you end up butting heads a lot with others that just can't seem to agree with you.
I wrote a bit about both my mom & dad in my last post about unsung heroes. I think what I described about each of them speaks to their determination and dedication. Maybe part of that was that they were born in the early 20's and lived through the Great Depression. I know that hearing stories about how they struggled to make ends meet, especially in the beginning of their marriage, it wasn't easy. But they did what they had to do.
I mentioned my mother's health is not good. She drives herself to the doctor, she drives herself to the hospital when she has to go for one of her periodic stays. She has friends who would gladly take her, but she hates to be a bother. We were talking about it the other night on the phone. She'd had to have an endoscopy and had a friend from church take her. Mainly because they wouldn't do it unless she had a ride. In any case, she says it all started back when I was born. Figures it would be my fault - lol. The night before I was born, my dad ended up in the hospital with kidney stones. He also ended up staying a day longer than mom - and claims his effort in passing the stone was much worse experience than childbirth, they agreed to disagree on that one. In any case, mom was home alone with my brother who was almost 11 at the time when she realized she needed to head to the hospital. She called her folks (who lived several hours away) to come stay with my brother so that they would be there in the morning when he woke up. She drove herself to the hospital during a snow storm, having to stop every few blocks to scrape the windshield. Later my brother would ask why she didn't wake him so that he could ride along and at least take care of the scraping, and she said it didn't occur to her.
A couple years ago during the winter, KY suffered a bad ice storm that took the power down through-out major portions of the state for several days. I spoke to mom on the phone the first night of the storm and at that time she was fine and the power was still on. My brother tried to call while we were talking and then called me to see if I'd heard from her, when I indicated we were on the phone, he said ok he just wanted to make sure she was ok. The next day the storm was still bad, and once again I get a call from my brother asking if I was on the phone with mom - no I wasn't this time. I had thought I would try her shortly but hadn't got to it yet. So we decided the power was out. She has one phone that is an analog, so sometimes she can answer it even if the power is out, but we figured the phone lines were down as well. I tried her cell, but could not get through, but had heard that the cell towers were also impacted by the storm. My daughter was with me and she had the idea of contacting the police to see if we could find out anything. I spoke to a dispatcher who was very nice and offered to send a car to check on her and to see if she wanted to come to a shelter they had set up, and to call back in an hour to see what they found out. So I let my brother know and we waited an hour, then I called the dispatcher back, and was told that yes mom was fine, that she doesn't have power or water, or phones, but that she was doing ok, and that she refused to go to the shelter. I got on the phone to let my brother know. We were both sure that this was another example of mom being stubborn and not wanting to be a bother. He was fussing about how he couldn't even call her on her cell to try to talk sense into her. You see, if you ask mom how she is doing, her standard answer is that she is doing ok. or I'll be ok. She could be in great pain. Dealing with who knows what, and sometimes she would share what it is that is going on. But each time she would finish by saying "but I'm ok. I'll be ok. Don't worry" So the dispatcher telling me that she refused to go to the shelter when the police car went to check on her, and saying she was "ok" that fit. She was just being stubborn. It sounded so like her. We were worried. The temps were down below freezing. People were without power for most of the day and possibly the night before. I was worried that she couldn't open her garage door to leave in the car if she needed to do that to go someplace warm. The garage opener of course wouldn't work without electricity. We decide we will follow up again in the morning to see if we can get someone to check on her and talk her into going somewhere.
The next morning I get a call from mom. Her analog phone is now working. She wanted to tell me that she was "ok" and that my brother had already talked to her and that he was driving down (5.5 hr) to get her and wanted to let me know. He was worried he would find any place for gas. I called him and told him if he could get to mom's then they could drive her car back to his place. It most likely would be sitting in the garage with a full tank of gas. I was right, it was. Good thing too. There also wasn't any gas stations open in that part of the state.
Later when we talked to her about the ordeal. She said the power had gone out that first night a couple hours after I talked to her. The house slowly cooled off over night until it was down to the 40's the next day. She said she tried getting a hold of hotels in the area and was thinking of going there to wait out the storm but found out that they didn't have power or water either. She didn't know about the shelter that was set up. she also said the police car that stopped by to check on her didn't offer to take her to one, so since she didn't know there was one, she didn't know to ask. She just figured she had to do the best she could. She said we were wrong about her refusing to go, that she was sooooo cold that she would have gone anywhere if it meant getting warm for a while. She bundled up in several layers, even wore her gloves inside to try to keep warm. She ended up with a light case of frost bite on the tips of her fingers. She said she kept having to take the gloves off and on to do anything. One of her neighbors came by the one night and brought her some spaghetti he had made on his grill. He was able to use it to cook and thought she might want something warm for a change. She said that was nice of him and that it was nice to eat something hot. She mentioned other friends later spoke of having small kerosene or other sources of heat, or even wood stoves etc. She didn't have anything.
My brother picked her up and they took her car back to Lexington and she stayed there the rest of the week until power was restored. They said it looked like driving through a war zone driving across KY on the parkway. Many of the trees were sheered off from the storm, no lights, etc. No gas stations for miles and miles. I am so glad he was able to go get her. I think if she had to stay there at home another night it would have been too much for her. I can't imagine how cold she had to be.

silent heroes; unsung heroes

2010-12-22T21:40:00.000-05:00

People that overcome serious hardship or disability or even pain with a smile are amazing to me.
My boss was telling me about his mother-in-law. She was diagnosed a couple years ago with ALS (Lou Gehrig disease). That is a really terrible disease. I've known of about 2-3 people with it, family of friends, or friends of friends, etc. Basically most people that get it end up not being able to control any of their muscles and end up totally helpless and dependent on others. Their minds are fine, but trapped in a useless body. My boss was saying his MIL, we will call her millie to make it easier, was now at the point where she has lost use of both arms, legs, etc. Last thanksgiving Millie was there, and still able to walk and talk and get around. You could tell something was wrong, but not a major issue yet. A year later, she is in a chair, the daughter has put an elevator in the house so she can ride up and down, she can't control her power chair anymore so someone else has to do it for her. They put her in the elevator and send it up and then climb the stairs to meet her. He was telling what a good sense of humor she has. How something happened and the sister put her mother in the elevator but something happened on the way up and Millie was forgotten in the elevator. She could hear everyone laughing and talking but couldn't make a sound to call attention to herself. They figured she was there about 15 min before another sister thought of her, and asked where "mom" was. How frightening would that be for most people? or how pissed off to be left? Apparently she saw the humor in it. I asked how she communicates since she can no longer speak and can only grunt. He said she has something called eye gazer? Like a screen with either letters or words, and you look at it and blink and it is smart enough to identify what it is you are looking at and uses that to write words. He said she has I guess the equivalent to a blog on a caring and sharing website. She writes long journal entries much like the story of being left in the elevator regarding different things that happen day to day. The entries are full of humor. He said she is an amazing woman. I agree. How easy would it be to just give up. Become angry or bitter? But to face life with humor, that is amazing.
Another hero I'll mention was my dad. He lost the use of his left arm when he was in his 20's. After returning from WWII. He was in college to become a surgeon. He'd been a med-tech during the war. He had a motorcycle accident. Hit and run. They didn't expect him to make it. He was in the hospital for several months and they didn't think he would make it. The family was called. He went in a healthy young man that probably weighed 140? he dropped below 90 during his stay. After he got out, went through rehab. He met my mom. He changed his career path and instead of becoming a surgeon, he continued to college and ended up getting his phd and became a professor teaching pre-med students. He could do anything. I remember growing up thinking he could do anything. He was able to do anything anyone else could with the exception sometimes of needing someone to "lend a hand" and hold something. He could tie his own shoes. I'm not sure I could do that one-handed. He coached my brother's little league and hit balls to the various positions and could play catch, anything anyone else could do, my dad could do it too. I never thought much about it. My brother has said since that he most likely had to deal with some extreme pain. phantom pain, etc. He never considered himself handicapped in any way.
That was part one. Part two, in 2003 he had a flu shot in the fall. As a result he ended up contracting Gilliam Barre. He was medivac'd to a hospital, and they ended up giving him plasma to stop the progression. His hand (only one remember) and feet and legs were paralyzed. GBS starts by paralyzing the extremities. Then it progresses in to the trunk. Then eventually to the heart which is of course a big muscle. He fought back. He went to a rehab hospital where they normally treat stroke victims located about 1 hr from where my folks lived. He stayed there a couple months. He learned to walk again. To feed himself again. He made it back. Not as good but he fought and came home. Unfortunately kidney infections and urinary tract infections plagued him. Some of that was due to needing a catheter (another side-effect of GBS). His immune system was weak, and couldn't fight the infections, which usually ended up meaning another stay in the local hospital. Each set back was harder to overcome, he would lose ground. Suddenly my dad looked old. Looked feeble. Looked like he might not be superman after all. But his pride. He had so much pride. He ended up with a wheelchair at the house, he walk short distances but it tired him so. He could transfer himself from the chair to the toilet, to the bed, to his recliner etc. My mom would have been too weak to do that for him. He ended up with a bed sore on his bottom that required operation due to an infection. Unfortunately they had to remove so much that he had to stay in the hospital, then ended up moving into long term care. He so wanted to keep working on rebuilding his strength. Insurance would no longer pay for PT or OT. He tried to get the aid's to help him (they did the best they could) to do some of the exercises. But it wasn't the same. And for whatever the reason, he kept losing ground. I say GBS (and the flu shot that started it) was the cause of death. The official reason was myocardial infarction. Fancy way of saying his heart stopped.
My third example of an unsung hero is my mom. The entire time my dad was struggling, she was there beside him. When he was in the rehab an hour away she was driving back and forth to be with him. When he came home and couldn't sleep in the bed because he didn't find it comfortable, she too slept in the family room in her recliner so she could be close by to hear him in case he needed her. When he went back in the hospital she continued to put her life on hold and spent each day with him. When he would suffer with hallucinations from the antibiotics, she looked past it. He was never a cruel man. He was always full laughter, and smart, and kind. The antibiotics made him a little crazy. He was sure there was a conspiracy that someone was out to kill him. He was in a fantasy world mixing the past and the present and some fantasy tale of who was involved and what was going on. Several occasions he would beg mom to take him home, that they were after him. At the worst, he decided she was in on it. Was mean and spiteful. Spoke to her nasty in front nurses. Embarrassed her (for him) completely. He even called 911 and then called a couple former students in the middle of the night to ask them for help. He would call mom at night wake her from what little sleep she got to beg her to come get him. She ended up having to take the phone away from him so that he couldn't use it at night. She took to sleeping at the hospital in his room. He had a roommate, so there was no spare bed, the one chair for visitors was uncomfortable to sit in much less to sleep. But she was there. Day after day. Night after night. She neglected her health because she claimed she didn't time to go to dr's or do those things. He needed her. She's been lost since he died. They were married for almost 55 years when he died. Now her health isn't the best, and I wonder how much longer she will be here.

Anniversary celebrations

2010-12-22T20:00:00.000-05:00

I missed celebrating my "MS" anniversary. How could that be? Some people seem to make a big deal of it. Do they send out party invitations? One never knows. I was diagnosed Sept 2009. Started Copaxone on Halloween - 10/31/09. That's an easy date to remember. I'm really bad at remember dates. I can remember my birthday. Major holidays. My daughter's b'day, my partner's b'day. I can remember other family member b'days. So maybe it is anniversaries. But hey, I'm not the only one. M and I first started dating back in 2000. Then we broke up for a while in 2001, and got back together in July of 2002. We moved in together in August of 2003. Exchanged rings in a ceremony in October 2003? But dates? well. at least I'm not alone in not remembering the exact date. Maybe if I was in therapy I might find that there might be a reason for that. lol
Most likely I have had MS a lot longer than a year though. I know if I think back I've had some symptoms etc over the years. Some might be questionable. But I think that the problem that I had back in 2004 with numbness/tingling in my right hand/arm is related. At the time I saw various doctors, ended up with it treated as a workman's comp case. I work on computers - so obvious solution - carpal tunnel. Before I got mixed up with seeing the WC case docs my regular doctor sent me to a nerve specialist who ran some sort of test seeing if the nerve pathways in my arm "worked" Basically he attached some sort of electrodes to various parts of my hand and arm, and sent sound waves, what a weird feeling! He couldn't really find any issues with the paths from my shoulder all the way to my hand. So his results (for carpal tunnel) were inconclusive. Later, after getting moved over to seeing the WC doctors, well, I wasn't just having "tingling" I was having pain. So I was willing to try most anything. They insisted it was carpal tunnel, that having the surgery would "fix it" So... to make a long story short, I had the surgery. I had my doubts at the time. My hand wasn't really numb - its more like sensations are too much - over sensitized. And it wasn't just my fingers, most people have either their thumb, or certain groupings of fingers depending on which nerve is impacted. I had it on my entire hand. And up my arm. No one had a really good explanation of that. So anyway, I had the surgery. Amazingly, it did help. I think that could be coincidence. Or may some of the meds I took helped with the pain, etc and time healed things. Who knows. However, the tingling did come back. It maybe was a month or several, but I now always have a slight tingling in my right hand. Oh, the other reason carpal tunnel isn't so likely is that while most people might end up with it just in their right wrist, being left handed, it is less likely. I use my mouse left handed. I use my left as much or more than my right. So why just in my right? Who knows. The tingling is much like what is in my feet now. My feet are not as bad as they were in the summer of 2009 when I first was going to the doctors to see what's wrong, but sometimes it is worse. Sometimes it flares. I often have the feeling of "balled up socks" that I'm walking around on. The tingling, in my feet, sometimes up my ankles. I haven't had it go all the way up to mid thigh like it did progress in the beginning. So, again I think my right hand was one of the first MS symptoms.
Recently I was reading on another blog regarding the "tingling" and comparing that to white noise. That is a very good analogy. And yeah the white noise feels a lot better than the "noise" that was used during that test. That was like squeals and squelches, sort of like feedback. But I don't find it (the white noise) comforting. It could be worse, yes. Pain is worse.
This was a busy month for Dr visits. First my neurologist - gave me a clean bill for moment, Go back in 6 months. Mentioned at some point will want to "find an excuse" to do a MRI (insurance I guess wants an excuse), in order to check on the lesions in my head. See if they are worse, or active, or ? I don't think go away. I guess I should read more. I also saw the surgeon about the results from my thyroid test - all normal. So guess my body doesn't miss that 1/2 a thyroid - at least not yet. I go back again in 3 months to test again. Saw my regular doc today. got results from the rest of my blood work. My LDL bad cholesterol is still above 100... apparently keeping it under a 100 is the magic number for someone that is borderline diabetic. So I'm to increase my cholesterol pills. Also someone messed up in ordering the tests and didn't order an A1c to test long term blood sugar, and my fasting sugar was up - it normally is, apparently my liver loves to produce insulin overnight whether I need it or not. So she added something else to help with that. I feel like I have to take a pharmacy with me when I travel.
Ate dinner with a good friend the other night. we were talking about how things change over time. She was considering whether she wanted to take a job promotion, or look for another job somewhere else. During the conversation we talked about how insurance benefits play a big role in our decisions now. She had a liver transplant over 20 yrs ago. She is very healthy now, but will be seeing doctors her entire life, and having tests etc to make sure she isn't rejecting the liver. She mentioned how before our conversation she really didn't think about that. And how unlike her that was. She said she always thinks of her health, of medical needs, etc. For her to have been so nonchalant about it, so unlike her. And it is an important part of our decision making, etc. I moved to PA back in 96, left a job that had insurance benefits. Moved with a 11 yr old child. Moved over 1000 miles. Without a job, or a definite future. Sure that it would all work out. It did. Would I do that today? I'd be too afraid. I'm afraid to think about switching jobs today without making sure I can keep insurance coverage. Yeah, there is cobra, but that cost $$. Plus I have to pay a mortgage. Life is different now. Sure, if I had to, I could go or do, and I know that everything would work out. It always does. One way or another. But I won't jump now without making sure there is a net.

HO HO HO and Bah Humbug

2010-12-21T16:25:00.000-05:00

Its really hard to accept that this week is Xmas already. Blink once and it was summer, blink again and it was fall, and now its the end of the year. We are having an unseasonably cold winter and even fall. Setting records down in the low twenties, or single digits for this time of year. I don't like the cold. I am ok if it is cold but dry. Meaning no sleet rain mix, or no wet snow. Powdery snow isn't so bad. I could do without the bitter wind though. And to be quiet honest I'd just as soon stay inside when it is cold. I like fall. I like it better when the weather is in the 40's - 70's. 80's aren't bad. I was saying the other day how I don't like the cold, and M was telling me that I don't like hot weather more. Hmmm.... I didn't agree. She insists that I am miserable when it is hot. Perhaps she is right. I used to like hot weather. Hot weather when I was young meant summer break. And if it got too hot, well, then jump in a pool, or the lake, or whatever is nearby. I love the water.
But I know that sometimes I still think of myself as I was when I was younger. When I could jump up and run across the room, when I could play ball, could hop skip jump if I wanted to. Now those things aren't an option. Yes I can jump on my bike and ride. Sometimes I ride better than I walk. M was talking about how happy a friend of hers was about something a while back and mentioned that she was so happy she was skipping across the floor. Somehow the subject changed to whether or not I could do that. Skip. I used to be able to. My brain says it still knows how. My body thinks it can. But alas. It isn't the same body it used to be. As it thinks it still is. So ok. I can't. Most of the time I accept what I can't do. Other times, I think it is unfair. Where has the time gone? Blink and my daughter is now 25. WTH. That can't be right. In a week I'll be 48. Pushing 50 as M's sister calls it. Whatever. I don't really care how old I am. Or whether anyone knows or not. Some people can't seem to believe that I am old enough to have a 25 yr old daughter. I think that is sort of like saying oh but you don't look sick.... I sometime feel oh so much older.
Earlier in this post I abbreviated Christmas as Xmas. or xmas. I do that quite often. The other day I saw someones post on facebook complaining about how people need to put the "Christ" back in christmas, and how it was somehow "blasphemous" to use "xmas" - whatever. I mean I'm sorry if someone is offended. But sometimes I think I'm offended by the extremes some people go to with religion. It's a holiday. The same people that fuss about it seem to be fine with the idea that it is also a day where we celebrate looking for some big fat hairy man with a big belly and beard that wears funny clothes wants little kids to sit on his lap and give them candy canes. Really? How confusing is that for parents to one minute tell their kids to stay away from strangers, and not to take candy from strangers etc to then say go on sit on the fat mans lap.
I'm terrible at keeping up with this blog. I started it as a place to keep track of my thoughts. Which is ok. Sometimes I do want to express things and this is as good a place as any. I sign on and get swept away reading other peoples blogs. I'd much rather be a voyuer I think. Reading about other peoples lives. They do a better job as story tellers anyway. Plus I feel I get to know them. They become my friends. Much more interesting than my boring entries. Dear Diary. It snowed yesterday. Then it melted. LOL
I had my Thyroid surgery. Recovery was really no big deal. Still look a little like someone took a knife and slit my throat and I have the scar to show for it. That should fade in time. Other than that it was a non-event. Luckily the nodules in the half of thyroid they took out were benign. There was incidental traces of cancer cells in the thyroid itself. But not significant. Whatever that means. At this point it is wait and see. I had my thyroid levels checked after 5 weeks and they are normal. Before the surgery they were high normal (or low normal, meaning low number but thyroid was over productive on the edge of normal) now it is mid normal but he wants to check again after 3 months to see if something changes. Then watch the nodules in the right side to make sure they stay stable.
M had her elbow surgery. Tennis elbow. Don't think she has played tennis in her life. But has had various jobs with repetitive motion. That and some heavy lifting. In any case, the surgery went well. Dr had said it would be 2-3 month recovery before back to 100%. She has close to 95% of range of motion back. Is still restricted on how much she can lift (no more than 25lb). And on light duty at work for another month. She's the type to have trouble sitting still and not doing. So having to take it easy has not been easy for her. Also, because of her being on light duty, I've had to pick up the slack on some things. Like carrying 40lb bags of wood pellets in from the garage to put in the pellet stove. So I've had to work harder. Some things I can do no problem. I don't carry things up stairs well. Need one hand free for balance mainly. My problem is as much my knees - especially the left one, as anything. The last synvisc wore off after about 4 months. I'm not due for one until January. The past week or two have been pretty bad. It wants to give out, and it grinds. Most painful is when it is bent and I go to straighten it. It isn't painful while it is bent, just the straightening it up. and the putting weight on it. Trying to decide when to plan to have surgery to just replace it. Right now think I'm going to wait until October. Then I can enjoy riding my bike this year. Course might be sorry if the knee causes more problems.
Like I started to say, M seems to think I sit on my butt all day. I am a network engineer. Work on a computer all day. I do get up and walk around, sometimes move equipment around. but it is a very sedentary job. However, it can be stressful. And it can be tiring. My old job I used to travel periodically. This one not really. 2-3 times a year or less. I pull a lot of on-call. 2 weeks on, 4 weeks off. That gets old. On the plus side, if I get called, I can remote in from almost anywhere. My old job I could work from home. This one office politics won't allow it.
Within a week, my daughter and I will be flying off to visit my mom for xmas. We go twice a year. At memorial weekend, or the anniversary of my Dad's death, and sometime near xmas. Mom isn't doing so well. She's 84. Has congestive heart failure - but she looks so good. To look at her she does look very healthy. But walk with her, you see she can't cross the room without getting out of breath. She has a huge in-operable anuerysm wrapped around her heart along her aorta. Part of the congestive heart failure, her feet swell up really bad, and she retains fluid. She takes meds to take the water off, and ends up in the hospital every month or two to have fluid taken off, but they have to be careful because her kidney function isn't the best either. Too much of the meds could shut them down and she could go into kidney failure. She gets so worn out, and can sound so weak. The latest thing is that she has something that causes her problems swallowing. Her throat is sore but not like with a cold/sore throat. When she eats everything tastes bitter. She says she is still eating. But the swallowing is difficult and that she will eat something that she really likes and hopes it will taste good but it doesn't. I worry about her. Also that she is so far away. 1000 miles. To drive takes 2 days. Flying is an almost all day thing too. No non-stop flights. Unless I want to drive 2 hrs to an airport, fly to another and drive 2 1/2 hrs to her place. Add the time to fly, and get there early enough to through security and it is a long process. This trip we are leaving from an airport only 15 minutes away. Have one layover then fly into another small airport that is only 1 hr from Mom. Good news is that she can drive up and get us. She still drives. I trust her to ride with her. She won't drive after dark, and doesn't like to drive in strange places or big cities. My brother lives about 5 - 5.5 hrs away. He is able to get down there to visit fairly often - least once a month. He worries about her too. Has talked about getting her to move closer to him. She will have nothing of it. As much as I worry about her being so far away, and there by herself, I see her point. In the little sleepy little town that she lives in, she has a lot of friends. People that care about her. Things are different in that little town than they are in other places. That can be good or bad. For her it is good. People know their neighbors. Look out for each other. People gossip, but sometimes in a good way. She has a church family. She isn't alone. If she were to move to where my brother is, she would be in a big city filled with strangers. Other than my brother and his wife, no one would really care. She says she would be bored, feel isolated and alone. Would hate to be a burden to my brother. Wouldn't feel safe driving herself. And would become a shut in. I think it would be the beginning of the end. But that doesn't mean I don't worry about her. And don't feel oh so far away sometimes.

Edie & Thea

2010-11-11T13:21:00.000-05:00

Someone sent me a link that I want to share here.
Edie Windor and the ACLU Challenge the "Defense of Marraige Act"

Edith "Edie" Windsor, who shared her life with her late spouse, Thea Spyer, for 44 years, filed a lawsuit against the federal government for refusing to recognize their marriage. The lawsuit challenges the constitutionality of the "Defense of Marriage Act", a federal statute that defines marriage for all federal purposes as a legal union between one man and one woman as husband and wife. Windsor and Spyer were married in Canada in 2007 and were considered married by their home state of New York.

I think Edie tells it better than I possibly could in her video clip. Please watch it.

what is real?

2010-10-31T01:19:00.000-04:00

I got a comment on an earlier post regarding the outcome of surgery I recently had, and it made me think of the topic of this post. When you meet people online, either via chat rooms, message boards, blogs, etc, there is talk of this being a "virtual world" vs the "real world" which is the one we live and breath and work, etc.
Sometimes, I think the people in the virtual space can be as real as those in real life. For example, I just had a virtual stranger ask me how I was, if I was ok, after having some surgery. That to me is a show of concern. I don't think imaginary or virtual people are that real. Also, Diane seems very real to me, I read her blog, know (I think) quite a bit about her from her blog, so she seems like a friend. Of course someone can watch a TV show week after week, and get to know the characters and they can also seem like people you "know", almost like friends. But the difference here is that online, there is an interchange. I read her blog and can comment, and she can comment back on my comments, and she reads my blog and leaves comments for me as well. Mine is not near as interesting as hers, and I don't write near as often. So by exchanging comments it becomes a form of conversation, and we can get to know each other, at least superficially. which makes it more real. I could also argue that I have friends (acquaintances?) that knew I was having surgery and haven't made any effort to check on me in real space, so having someone do that in the virtual world, is a nice thing.
One of my favorite books is a kids book. The Velveteen Rabbit. In the book toys become real through the love of their owner. I think I had a point here somewhere, but I think I lost it. So instead I'll just say that maybe virtual space is sort of like that too, it becomes as real as those who participate in it. And yes, I know there are many fake people on the Internet that are out for no good. My mother always warned be about those people. You know the ones out for no good. I think they should wear a label or sign. I don't believe everything I read or see. But on the other hand, I don't doubt everything or disbelieve it either. So I will continue to write my blog for my own reasons, and continue to feel a part of a community. Which is a really nice thing.

thyriods - what's it good for?

2010-09-22T17:07:00.000-04:00

Well, my 6 month follow up appointment to review the Thyroid scan that I had last week was today. Results are that the nodule on the left has indeed grown, and is now larger than 3.5cm and therefore needs to come out. So I am now planning to be out of work for 2-3 weeks at the end of October to have 1/2 (the left) of my thyroid taken out. Last time I saw this dr I wasn't too happy with him or his attitude, he seemed more interested in showing off for some interns he had with him than in talking with me. Today, it was just him, and he took the time to talk to me, explain things and while I feel he is still egotistical that isn't always a bad thing when you are talking to a surgeon - hey I want him to be the best at what he does too.
It appears there are some risks - that involve the vocal cords and some other things. According to my doctor he is better than "what the books say" and that there is a less than 2% chance of any issues with him doing the surgery. That is apparently based on the number of these operations he does.
I'll talk to my brother about what the dr had to say and about the plan for surgery to get his opinion, and/or that of his buddy that does these sort of things there where my brother practices.
I'll also talk to my mom about it. She will worry, but then according to her, that is her job - mothers are supposed to worry. At the moment I'm not too worried about any of it. I'm glad it is just the one side, and that most likely nothing will be done on the other side unless they end up finding cancer on this side. Apparently the nodes on the right are stable and not growing. And the other big thing is that I won't be having to have another thin needle biopsy. I guess I'm saying I'd rather have the surgery than to have them poke another one of those skinny needles in my neck and push it around trying to collect cells.
The one thing I find somewhat depressing is that my thyriod levels are "great", or if anything my thyroid is over producing. Which I'm told is good sign that the surgery will end up having no effect on my needing thyroid meds.
Oh and one other thing the dr shared was that might not be such a good thing, and that is that the prognosis of this not being cancer does have one problem. Apparently I'm "old". Sometimes I do feel old, other times I wonder where the years went, and forget myself. Anyway, according to the dr who says he's my age, we are above the age where thyriod issues normally show up. So being mid-late 40's almost 50 is "old". So perhaps I should worry now that there is cancer. But then why borrow trouble.

stuff

2010-09-18T17:03:00.000-04:00

Been a while since I posted. Life has been busy. Which is a good thing. Spent Labor day weekend camping with M up at the PA Grand Canyon for a 4 day weekend. Got to site see. I'm not sure what I expected. But it isn't like the Grand Canyon, but it is a huge gorge. Lots more forest and trees. We biked along the rail trail - which parallels the river at the bottom of the gorge. At most it is a 2% grade. The temps were cold. In the 50's and dropped into the 40's at night. That's cold when you are staying in a tent. But we did ok. We have a huge tent - 10'x20' with room to stand in it. divides into two rooms. Basically we have more room that many of the RV's that were staying beside us. The following weekend we took another long 4 day weekend camping trip down to the shore. Went down in Delaware and stayed at Cape Henlopen which is outside of Lewes. Again we stayed in the huge tent. Temps were great - in the 60's - 70's. We biked everywhere from camp. Some great trails, and unlike roads here at home, they have lots of bike lanes, and are familiar with the idea of sharing the road. Here in PA where we live, even on the "bike routes" there is rarely a bike lane, and motorists are rude. Most roads also don't have sidewalks either so if you walk or ride you trust traffic to pay attention. The weekend before Labor Day we also had a nice weekend, at home, just the two of us. W had gone off to visit one of his women friends - he's quite the casanova.
Which is great. He's a sweet guy, in good shape for 70, and loves life. Who says life has to end when you get to be a senior citizen. Apparently that includes an active sex life. I don't want details, but I'm happy to know he is able to have fun. Long as no one gets hurt - what's the harm? One problem he has is trying to juggle mutliple women at the same time. He is back here now, and has one of his ex's visiting from Co. But I think he really likes this one that he just got back from visiting. So guess at some point he will have to decide if he is going to settle down. M claims that now that we have her dad living with us, I should now understand her better, her sister just says I must be a saint to deal with living with both M & W, LOL.
Right now, I have a slight delima and am having to research a product that W's new g/f is swearing is the cure for everything. W has bought into the speil, which my gut is saying do you hear "snake oil?" or pyramid scheme? Come on, drink the koolaid and you too can believe. Apparently there is a whole line of products. Including some sort of stuff W put on his face which cleared up his rosacea while he was in SC. The juice drink is supposed to give you all sorts of energy, help people with MS, help people with joint problems, all sorts of things. According to the testimonials W had heard a tape on, all sorts of people gave up all their med's and were able to just drink the juice and were able to walk again, and have energy they never had before, and suddenly live fuller lives. I was always raised to be a skeptic - if it sounds too good to be true, it probably is, and there is no free lunch, etc.
M however promised W that we would hear and investigate this stuff with an open mind. Ok, so anything is possible, and there could be something to at least some of this stuff. So now I'm researching some sort of juice stuff called xango, and mangosteen. For something that is supposed to be the biggest thing since sliced bread, I've not heard of it before.

Rest & Relaxation

2010-08-30T19:20:00.000-04:00

This weekend was a great weekend. Not that anything truly remarkable happened, but maybe because it was just an ordinary weekend. W has been off playing casanova the past couple weeks so M and I have the house to ourselves. We both took off Friday, but not to go anywhere or do anything. Not that we did absolutely nothing, but sometimes M feels the need to have an agenda, somewhere to go, things to do, I sometimes like to just relax and have no plans. So this weekend we had no real plans. Friday we got errands ran, and just took care of things that needed to be done during the week but we never seem to have time for while working.
Saturday we took the bikes down to the Heritage trail and rode 14+ miles, then went to a friend's pool party that afternoon. The weather cooperated, wasn't unbearably hot. The trail is shady so that helps! Sun was out and pretty warm at the pool party but then that just made it feel good to jump in the water. Got to swim a few laps and tease a couple of the dogs that wanted to follow along the side of the pool back and forth... I always loved swiming. I miss having a pool or a gym membership with a pool. I did forget though to watch my knee while trying to swim laps. I have a tendancy to hurt my left knee while kicking unless I either wrap it first or pay close attention and dont kick hard and just use my arms to pull myself along. Well, I forgot. But nothing serious. We had fun.
Sunday we loaded the bikes up again, and went back down to the trail and this time did 18 miles. It was a little warmer on Sunday, but there was a nice breeze and of course the shade on the trail. This was first weekend in over 3 weeks that I was able to get out on one of the trails and ride. I'd been on-call the previous 3 weekends.
Riding helps my knees, but then they are stiff afterward. They were stiff when I woke up Sunday morning, and stiff when I started out riding Sunday, and stiff this morning as I went into work. By now they have loosened back up. Relaxing in the Hot tub also helps my arthritis a lot. I am sooo glad that my MS didn't take that away and I can still enjoy soaking my aching bones in the hot water. There have been some times, usually in the midst of a flare that I can't tolerate the heat but normally it still feels good.
So here's to rest and relaxation. And to a great weekend.

the future, predictions, predictability

2010-08-27T01:07:00.000-04:00

I posted about being worried because of being denied disability insurance. But for the moment, I feel pretty good. As M told me the other day, she's glad I'm as good as I am. I am sure not going to run any marathons, and some days I limp and hobble along, but that is the bad knees, not the MS. In some ways, the whole MS thing hasn't really hit home. Sure I saw the little white lesions on my brain MRI. Sure, I have had issues with numbness in my feet and legs, some of which will flair back up, I sometimes feel like I walk on a pair of balled up socks under the ball of my feet. But is it really real?
I believe that I still have a long productive road ahead, of work, life, etc. There are a lot things I haven't done yet that I want to do. So, I am stubborn enough, determined enough, to want to do them. Right now, M & I are working towards getting healthier, eating better, getting more physically fit, losing some of the excess weight we have both put on over the past few years. I get frustrated with things that seem to keep jumping in as road blocks - things like breaking my ankle, finding out I have MS, etc. But I'm no quitter.
I have had to learn to reinvent myself several times in my life. M likes to say I grew up in "leave it to beaver's" household. In some ways I did. When I was small both my parents worked, but my mother quit her job and took care of me and the house and my brother by around the time I started school. My parents were married more than 52 yrs when my dad died. So yeah, I was fortunate.
It didn't stop me from wanting to get out and on my own as soon as I could. I couldn't wait to leave home, to leave the small town and everything behind. I dropped out of college to get married at 18. I followed my husband overseas where my daughter was born. We had a very rocky relationship. Abusive. I thought many times about leaving and heading back home, but I was too proud. So I stuck it out. While overseas, I managed to snag a good job with good pay, as a graphic designer I liked what I was doing. Then I found out I was pregnant. We came back to the states soon after J was born. I was trying to figure out if we could make things work. What the future was going to be. If I had the guts to leave and strike out on my own again, this time with a baby. I didn't have to make a choice. One night the police called to let me know my husband had been picked up. He was trying to arrange a hit on me for the insurance. Didn't much care what happened to our daughter, then decided she was worth more to him alive, due to being able to stay in on post housing and out of the barracks. So my choice was made, and I again had to start over. Thankfully my family welcomed me and my daughter til we got back on our feet. I went back to college and managed to graduate with honors. I obtained two degrees, one in accounting and the other in computers. During the final years in college I worked at a local accounting firm, and went there full time and become a CPA after graduation. I worked hard, raised my daughter and life was good.
After another 7 yrs or so, I guess the 7 yr itch struck, and I also fell for someone who lived 1000 miles away. I also felt stifled in the small town, in the bible belt where I was raised. My lifestyle was not that welcomed there. I met someone online, what started as a friendship, chatting online, exchanging emails and phone calls, and long letters, even trips back and forth across the country turned into a relationship. So I packed up me & my daughter and we moved. Once again, my choice in a relationship continued to be lacking, so that didnt last. M tells me, that it was a necessary step, one that brought me here to meet her. Perhaps. I can't argue with that.
M & I have been together almost 10 yrs now. Good years. When I moved across country 15 yrs ago, I reinvented myself again. I gave up the accounting which I had come to find tedious and focused on the computers and then branched out into networking and then VOIP. Most of the time it is work I enjoy.
Whatever happens going forward, I'm not afraid of the future. It will all end up ok. I am a believer in good karma if nothing else.

One of those people...

2010-08-25T16:53:00.000-04:00

Well.... Crap. I can think of many other words, but that sums it up. M and I are in the process of getting some of our financial things in order. I'm basically the bread winner. What the heck does that mean anyway? Did people enter contests to try to win loaves of bread? Same with bringing home the bacon? But I digress. It is my income that pays our mortgage and most of the bills. M most definitely contributes, but we could squeak by without her income, we can't even squeak without mine. So one of the items on my list of things to check out was something called mortgage disability insurance. This would pay the mortgage payment if some thing were to happen to me to keep me from working and being able to earn the income needed to pay it. Sounds good. Should be easy enough. I know M had a similar policy a few years back. So I stopped in to see our insurance agent. Uh Oh.... I have .... M. S. which apparently means I can't qualify to get any disability insurance. She apologied and said she was sorry, but that they can't write policies for that exclusion for any form of disability insurance or life insurance. Hmmm.... so I couldn't even get life insurance? Well... I currently have both life insurance and disability insurance through my work. Wonder if they are still valid? wonder how I would find out? or if I should even open the can of worms to ask? Sometimes it is nice to play ostrich and stick your head back in the sand.
From what I understand, those policies are still ok, but private insurance won't write policies for "our kind"... you know... the ones with .... M. S.
What a bummer. I know I have MS, but really, I'm relatively healthy otherwise. Ok, I have bad knees thanks to the osteoarthritis, and I'm over-weight. I am working on the weight thing tho, M & I both have been, counting points with weight watchers, working out, riding our bikes, using our wii. We are doing pretty good with it too. I've lost 14 lbs since beginning of July. Still have a lot to go, but that's an accomplishment.
So, hopefully things will continue, and I will still have a lot of productive working years ahead and we won't need to worry about how to pay that mortgage. The 66% disability from work's policy would be a significant pay cut. And it really isn't that we couldn't make it on less if we had to, but it would also mean making a lot of changes, downsizing, etc.
We will just have to look at the whole finance thing from all the angles and see where to go from here. This news doesn't really change anything, but it is still a bummer. Leaves a little more uncertainty hanging out there.
Well.... Crap!

generosity of people

2010-08-03T16:54:00.000-04:00

I'm rather amazed at how much I was able to collect for the MS Bike Ride. As of right now, the total is $1350. M was able to raise $381. When we first started talking about riding in it, M was concerned about being able to each raise the $250 minimum to ride (actually it is $150 to ride 1 day, $250 to ride both days.) Originally we were going to have a team, made up of me, M, W & M's sis and her partner L. W started having problems with his back and leg and decided he wouldn't be able to do the ride. He did try the French Creek ride a few weeks prior (which is similar hilly terrain) and was only able to do a couple miles, so he would have had a hard time with the MS Ride. M's sis and L thought the cost was too great - not the registration fee since that was similar to other rides, but the idea they would be required to raise at least $150 or $250 each to participate. So they opted out fairly early. L would have had as hard a time with the ride as I did, but Sis could have done it as easily as M.
Next year we are planning to do the Gettysburg MS ride instead which should be a lot flatter. I should be ok with that one. I just can't handle the large hills, especially during the heat of summer. But I'm not going to kid myself, I couldn't have handled the hills even if the weather was cool. Now sis is saying that she will join in and ride with M next year since M finished this one by herself. Of course talk is cheap, neither M or myself will hold our breath to see if sis decides to join us next year. When the time comes she will once again worry about how much $ she would have to raise, and feel like that $ was coming out of her own pocket. As it is, neither Sis nor L made a single donation to either me or M for this years ride.
So back to the point of the post. Granted times are tough these days with the economy being the way it is. Everyone is having a hard time. Different people also have different beliefs about what and where they want to support when it comes to charitable donations, if they even want to dontate at all. With money tight, I can certainly understand the feeling that "charity begins at home" I am not so free with making donations to just anyone or anything. However, if someone I know is trying to raise $ for a good cause, I'll make a contribution. Even a couple bucks is that much. And this is a personal cause for me. So maybe I take it a little more personal. Why wouldn't you contribute at least $5 to a cause that is raising money for research that might impact the health and future of someone in your family? Even M was disappointed with her sis and L for not making any contribution. I think she was more ticked off by that than I was.
Both M & I were a little worried about meeting the $250 goal we each were targetting. In the beginning dontations were slim. A dollar here, $5 there. I got most of my donations from people I work with. Some of them people I really don't know, other than to say hi in the hall, and maybe not even be able to tell you their name. My circle of "friends" here at work - the ones I eat lunch with, sometimes see outside of work on occasion, consider as friends. They contributed. Others I work with that I would have thought would, didn't. And lots of people just at random because they all "know" someone with MS, and believe this is a worthy cause. I am impressed. Our company does a $ for $ match to chartible contributions made to qualifying entities. So a good amount of my fellow employee's donations were also matched by the company. So I think I feel somewhat humbled by my fellow employees and how much they were willing to give. Some of them to a cause for a complete stranger. Pretty cool really. M was a little surprised too. She says it all has to do with that I work with a different class of people than she does. She was happy to get a dollar here or a couple bucks there from the people she works with.
I guess what impresses me is that people who are connected - inlaws, my family (with the exception that my mother did donate, and my daughter who is a struggling student and I didn't expect her to) didn't, couldn't, wouldn't bother to come up with even a $5 to contribute. Sad really.

The ride and recovery, and knees and things

2010-07-28T14:36:00.000-04:00

So we survived the MS Bike Ride. M did the whole 25 miles - she claims she actually did more like 27 miles due to getting lost with another MS Biker that had trouble following the course. I only made it less than 3 miles. I did at least 2.5, but less than 3. So I guess that makes me a 10%-er. Kind of fitting in a way. I am a leftie - like supposedly 10 % of the population. I am gay - another supposed 10% of the population. Who knows there is probably lots of other things I am that matches only about 10% of the population.
Saturday was extremely hot - it was almost 90 at 6:30 when we arrived to register. Plus the heat index. The route was all rolling hills, and not gentle ones. I don't do well with hills. Especially steep ones. My knees can't handle it. So after pedaling what I could and walking the bike up the worst of two really big hills, I was on the side of the road catching my breath. Wondering the wisdom of even being out here in the heat, when a SAG vehicle came by to ask if I was ok. I took him up on his offer of a ride back to the start/finish. He said no shame in calling it quits. Which I didn't feel any shame. I got out and I struggled and I did what I could handle. If I had kept going, I could have gotten myself in a serious mess. M asked me if I was sure I didn't want to keep going, and I said no. I did the right thing for me. I did what I set out to accomplish. I raised over 1175, and I went out and tried. Next year, we are opting for a "flatter" event. Flat and gentle hills I can handle.
Other than trying to ride on a day that was way too hot - temp & humidity, I've been enjoying being back on my bike. I am making an effort to get out and get more exercise and to eat healthier. I know that if I was to lose some weight it would help with my knees. Course that too is a catch 22. If I felt better, I would feel more like exercising, if I lost some weight my knees would feel better, making it easier to exercise to lose the weight to feel better to exercise. Oh well, it is easy to procrastinate, and find excuses. It is time to just get busy and "do" and stop waiting for something to magically happen.
I am trying to decide whether I want to plan to have a knee replacement next year or not. I want to lose some weight and get physically stronger, and get my knee especially physically stronger before doing that. Originally my osteo wanted me to wait until I was 52 at least. Now he seems to think I'm a candidate now, whenever I want to do it he will refer me (he doesn't do that surgery, he does the non-invasive stuff, and surgical alternatives). So seems to me he is saying it's getting time to do it. My concern is that I want it to help give me more of my life back. But what if it doesn't? Not being in pain all the time would be a great thing. If it gave me the ability to exercise and not constantly evaluate things as to whether or not my knee will allow me to do this or that... those would all be pluses. On the other hand, I've also read and heard it isn't for people who are looking for some miraculous cure, or that it won't eliminate all the problems, just will help with the pain, that with a replacement you aren't suppose to run or jump (ok, not that I do either now anyway), but I also can't kneel, crouch, etc. One reason I was always told to wait, and hold off is that the life span on the knees (the plastics) is only 10-15 years, and since you can only replace the knee 2x per knee in a person's lifetime I didn't want to end up not being able to walk at the end of my days. The other thing I keep thinking is that if I keep putting it off and wait for some magic time frame to arrive, what if I wait too long, and MS strikes and I can't walk anyway. So, I've decided I just have to determine if it will help me today. if so, then I should explore doing it. If it won't help me today, then I should wait.

ms bike ride - heat of the summer

2010-07-23T14:55:00.001-04:00

OK, so M & I are going to do the MS Bike Ride to Paradise and Back either Saturday (tomorrow) or Sunday. Who in all their wise wisdom decided that the end of July was a good time to host a MS event that requires people to be out in the heat peddling a bicycle for miles. I realize that most likely a majority of the people planning to ride in the event do not have MS, but really. Am I the only one? Am I the only one that thinks this is nuts?
I'm lucky that the heat does not effect me that much. Apparently that was one of the main symptoms that indicates if you have MS or not that I flunked. We have a hot tub, and most of the time I have no problem getting in it and enjoying letting the heat of the water soak my arthritic joints. I would be very disappointed and even pissed if we spent all the time money and hard work getting the landscaping done for the hot tub that now sits beside our lower deck. There are times that the heat gets to me - but I think that is as much related that I am now "at that age" as my primary care tells me. I'm 47 1/2 and yes, I have hot flashes, and hormonal mood swings and all the fun that goes with it. My partner M is 45 and is also enjoying the joys of pre-menapause. Complete with erradic periods. I get to skip that part since I had a hysterectomy 3 yrs ago. I must say that is one thing I definitely don't miss. And women who say they no longer feel like a woman, well psshaw!
In spite of being lucky that I can handle the heat (somewhat), that doesn't mean I am looking forward to going out with the heat index sitting at 106 and riding a bike 25 miles. I drink lots of water/gaterade when it isn't that hot. I'm not sure we can carry enough for this ride. I am told there are SAG vehicles on the route and that unlike many biking events they actually encourage riders to catch a ride to the nearest rest stop if they are "tired" or need help. Most biking events say that SAG vehicles are there for emergency medical attention and help only. They will pass info along to the HQ but will not be used as any kind of taxi service (even back to rest stops) for riders who are merely tired. So perhaps that is a concession to this being a MS sponsored ride.
M was asking last night why the event was scheduled for July, and commented that she thought this would be the last year she participated. She doesn't have MS and is in good health. She is in much better shape than me and the 25 miles will be a peice of cake for her. She can ride circles around me, but does think I am improving and is very supportive of my efforts. She has also committed to staying near me for this ride to make sure I'll make it ok, and to carry extra water for me. Now she is an angel. So, she was asking why on earth would they plan this for July? Only reason I can think is that they are using dorms at Millersville to house those that are travelling from someplace else and want a place to stay. I would imagine this is probably one of the only time frames the dorms would be available.
So, why are we still planning to ride? because we committed to doing it. I'm sure we will be fine, and we will just need lots of water.

whitewater rafting, biking on vacation, and getting ready for the msbike ride

2010-07-18T23:32:00.000-04:00

ok... it has been over a month since I posted. Life is flying by. Next week is the MS Bike Ride, we are planning to ride on Saturday. M has said she has decided to stick with me and make sure I finish, that I am ok, and that I have plenty of water/gaterade. She is worried about the heat. It is going to be hot. It has been hot. Why do they plan a MS bike ride for the hottest part of the summer? I suppose most of the participant riders don't actually have MS? who knows.
We just got back from our vacation at Ohiopyle. great place. known for whitewater rafting and bicycle riding. M & W and I rented a log cabin at a local camp ground. Not exactly camping - but that was ok (great actually) we were there 5 days. The cabin slept like 6 or 8, and had 2 bedrooms, one for me & M, and one for W. Double-beds in each. Also bunk beds but we didn't have anyone else along for this trip. The cabin had AC which was great. We ate all our meals at the cabin. it had a kitchen, plus we brought a grill. We got there on Monday 7/5. Tuesday we went for a bike ride, and mistaking the instructions from the girl from checking in at the campground we turned right on the trail instead of left and travelled about 11miles downhill (2% grade) toward Connesville when we thought we were going uphill toward Confluence. Easy ride, until we turned around. we stopped for lunch figured out what went wrong and started making our way back. That 2% grade was constant, and while it really wasn't enough to notice when we headed downhill, it made a difference going uphill. I was struggling, so I let M & W head on and I was going to take my time and snap some pictures. I was about 4.5 mi away from the car on the way back and had stopped to shoot some photo's of some rafters going down the rapids, when I heard a pfft and hssssssssssssssssssssssssssss, yep, I looked over at my bike, and the back tire was flatter than a pancake. it was now riding on the rim. no way I could ride it that way. I started walking it back, and realized after about 1/2 mi that I was now only travelling about 2 mph. Which meant with 4 mi left it would take me 2 hrs to get back to car. I called M to warn her I was walking. Sweet woman that she is, she pedalled back with a pump to try to pump my tire back up, but we found there was hole in tube and no stem showing. So she walked my bike and let me pedal out on hers. Saying she could walk it out faster than I could limp. Very true.
I'm doing pretty good on the bike now. It feels good to be back to riding. I really need to focus on excersising and getting my strength back. After doing the almost 22 miles last week on the vacation, I feel confident I will make the 25 miles next weekend for the MS Ride, just need to take plenty of water/gaterade. My walking isn't so good. Sometimes better than others. My left leg is definitely weaker than the right. Stairs are a problem. For a change it is now harder going down stairs than climbing up. Think that is the ankle. I'm at the point that I am thinking seriously about planning to have a knee replacement next year. I think it will help with quality of life. Also, I'm thinking I want to have it done now while I can enjoy it, and be active before I might get hit with more mobility issues from the MS and maybe won't be able to do that much anyway.
The vacation was great. On thursday we did a pedal and paddle, we rode bikes 9 miles up river, then rafted the 9 miles back down over some small rapids. it was lots of work but also fun. The water was low this time of year so we struggled a few times getting stuck on some rocks. But we made it. I felt sorry for M, she was stuck with most of the work travelling along with her 70 yr old dad, and gimp of a gf. but we all did our best and we made it.
We had some sadness in the family right before we left for our trip. M's dog was diagnosed with Lympoma a week prior, and we were hoping he would hang in there and make it the 4-8 months the vet predicted. Hunter went downhill fast though. We realized he wouldn't make it til we got back from our vacation. M made the decision to put him down before we left. We will all miss him. The house is much quieter without him. Even the cats all know something isn't right and I think they wonder where the big guy is.
M has been really taking it hard. Hunter was her baby. He was 11 and she raised him from a pup. It is never easy losing someone close to you. Even the animals who become such a part of our lives leave a big hole when they go. I miss him too. I also try to be understanding. Sometimes that is easier said than done. If you take two pre-menapausal (or menapausal - the pre may be debatable), emotional situations, it sometimes isn't pretty. Most of the time I have a lot of patience. Most of the time I can be very understanding. but there are times when you can step on my last nerve and I can't handle any more. Let's just say some days have been rough. M is the type though to sleep and wake up and it is a new day and yesterday is forgotten. I have trouble with that. Because I know a lot of it is because of Hunter I try to let it go. Also because of the various health conditions I have that are all exerbated by stress I try to let it go.
Focus on the good and let the bad slip away.
RIP Hunter Wood 1999-2010 - you will be missed.

knee surgery round 2

2010-06-10T19:40:00.000-04:00

Had the left knee surgery this morning. This time I'm using one crutch to get around. This one is definitely more sore than when I had the right one. I woke up after the other surgery with my knee actually already feeling better. This time I woke up and it ached. The Dr says he cleaned out a bone spur and that I might be feeling that. Also seems to think this knee is worse than the other one. But then I have felt that all along. In spite of what the xray's showed, I had always thought the left was the bad one. New meaning to "bad to the bone". He also said this one is definitely a candidate for knee replacement. Not sure yet if that means sooner than originally planned or not.

I'm resting (sleeping and dozing) and keeping my leg propped up with ice on the knee. Hopefully in a few days it will be better and this will have been a big improvement. I am thinking positive. I needed to do something, so this was the first step.

M signed us up for a bike ride on Sunday. I had said I wasn't sure if I would be up for riding due to the surgery 3 days before. She wanted me to move the surgery. I couldn't do that. I mentioned after the surgery and after realizing this one hurts more and will take a little more recovery that I wouldn't feel up to riding, she suggests I just wait and see how it turns out. Right now I'm limping with a crutch. But I guess I will see what sunday morning brings. W is also having knee or hip - or maybe just problems with the muscle in his thigh. So he isn't sure he will be up for riding Sunday either. M is is frustrated with both of us.

I just had my 6 month follow up appt with my neurologist yesterday. All is going well there. According to the neuro exam, my reflexes and responses are all good. Dr says this was best neuro exam results yet. I'm to stay on the copaxone and continue on and come back again in 6 mos (or call if anything new, etc).

I have officially started the fund-raising for my MS Bike ride. While I don't think I'll be up for riding in this bike event this weekend that M signed us up for, I do think I'll be ready for the MS ride toward end of July. I just hope it isn't too hot. So far I've raised $85 toward the $250 minimum needed. We are still riding whenever we can to get in shape for it. We went this past weekend and it rained. Riding in the rain (slow drizzle) actually felt pretty good. It wasn't a lot of rain, and it help cool things (and me) off. Only did 6 miles though. I really need to build my endurance back up.

Motivation, the importance of cat naps

2010-05-16T16:20:00.000-04:00

I'm finding it hard to get motivated. As M would say you are just being lazy.... Ok, maybe I am. I know what I should do, even what I need to do - I need to get moving, get my heart rate up, whether it is to work on losing those pounds I could do without, or just moving for the sake of moving. I know that I actually feel better when I am exercising and moving. But I just can't get motivated. I can procrastinate - I'll do that later, tomorrow, this weekend, some other time besides NOW.

I should get back on my bike and ride. My ankle is pretty much healed. My right knee is much better since the surgery. My left, well, it wants to give out, and it still protests but that is nothing new. Actually in the past I've found the exercise helps.

But really I'd rather go take a nap... Lately, I have been wanting to sleep a lot. I don't get to. I average only 6 hours or so most week nights, closer to 8 on weekends (that is IF we sleep in). Even those days I can/do sleep in, I wake up at normal times, but I find it sort of a luxurious feeling to get to get up and pee and climb back in a snugly warm bed/cocoon and not have to force myself to stay up and get ready to head to work.

I also think cats have it made (maybe it is just our cats, I realize those on the streets not so much). We have 3, two boys and a girl. Each with their own personality. The girl (calico) is definitely "miss thang", and you don't get in her way or she will give you attitude. We also think she suffers from permanent PMS (kitty bitch mode). She will meep at you (she sort of has like laryngitis where her mouth will move in a meow but only a squeaky "meep" comes out). Get you to pet her, then without warning might turn and try to bite you. The boys have also pretty much learned to stay out of her way - she hisses and snarls. Z the older tiger, is a snuggler, and a definite love bug. He loves to curl up and sleep with me. If I'm not available he will curl up with anyone that will pet him. He loves to walk just in front of you and then fall down and roll over as if to say ok rub my belly. It is a common thing in the morning as I head out for work for him to meow at me, talk to me telling me all his complaints about the world, he follows me from room to room, falling in front of me and rolling over in an attempt to get me to rub him, then as I walk around him and continue on, he will jump up and run up ahead to repeat the process. He is definitely attached/bonded to me. He is often my shadow, sitting at my feet if I am working in my office, snuggled up beside me in bed, or when sitting in the recliner. His brother (ok they are none of them related, but hey we also call the dog their brother as well), is a maine coon, looks like a lion with a mane of fur and thick fluffy feather duster tail, and tufts of hair coming out his ears, and so much fur/hair coming out the bottoms of his feet his little pads have never touched the ground. He has sooo much fur (strangely the vet called him a short hair when we got him at about 8 mos old) that we take him in the summer to have him shaved - they do a "lion cut" he seems to like it, keeps him cooler, and not so much fur to make hairballs with. He is such a fraidy cat, that we call him our cowardly lion. He and the tiger are true buds, boyfriends?, they snuggle together, groom each other, the tiger took him under his wing and played protector when he was a kitten, and tried to teach him all his bad habits. Such as how to sling water across the kitchen floor with his paw - the tiger loves to play in water, he drinks it from his paw, and he will sling water at one of the other animals if he feels playful. You can tell when he has been playing in the water bowl, he will jump up to have you pet him, and he will be soaking wet - both front paws and his chest.

They all make us laugh. The dog too. The dog is part golden retriever (his mom) and who knows - he has short red hair, a knot on his head, stands almost as big as a great dane, is built for speed (most dogs can't catch him, and he recently gave a deer a run for his money). He is a gentle giant. He used to whimper and whine when we would feed him a can of dog food and one of the cats (a 4th that is no longer with us, RIP coot), would take over his bowl and lick all the gravy. He could have pushed the cat away, barked and/or scared him off, but no, he would come over to us and whine. End result? we had to set out 2 bowls, pour off some of the gravy into one for the cats and put the rest of the can in his. They are all spoiled.

Watching their antics is good medicine. Some of the silliness can make us laugh. This morning I watched the tiger try to catch his own tail, he would spin around trying to surprise pounce on it, and then miss and sit and stare like what the hell is that thing attached to the end of my butt? I never saw that there before. Comical, and he isn't a kitten, he'll be 8 later this fall. I wouldn't take anything for him, or any of them, they can provide comfort and companionship when we feel down. Nothing can beat that.

Now I think I am just going to go ahead and give into the urge and find a warm bit of sun (or just the couch or futon) and take a nap and see if I can get one of the cats to join me in a cat nap.

update, musing on heredity

2010-05-06T16:05:00.000-04:00

Well, the knee surgery was a week ago. Right now I'm probably in the best shape I've been in for a while - ankle seems to be 100%, both knees working without too much pain or complaint. The right is much better than it has for some time - the surgery was a major success in my opinion. The left aches on occasion. Both creak and click when climbing steps. Luckily so far that is without pain. I sometimes feel like I could provide the sound effects for snap crack pop commercials between the noises my knees and other joints make. My ankle now joins in the sound effects band and plays popping sounds - reminiscent of popping bubble wrap periodically. Doesn't hurt but feels odd sort of like air escaping and makes noise. Various other joints also occasionally make noise - elbows and wrists, etc. I have only been diagnosed with arthritis in my knees. It is highly possible in my opinion I could have it other places as well. Supposedly osteoarthritis effects targeted joints, and isn't just spread throughout the body, unlike rheumatoid arthritis that can be spread through out. That is if I understand my reading correctly. For example osteoarthritis might only effect one knee and not the other (mine however is with both but in the beginning it was only the left), whereas rheumatoid arthritis normally effects both. Osteoarthritis apparently is more common, and is often due to just normal wear and tear on the body. Not much about it being genetic or hereditary, but my mother has arthritis. She for some time now has complained about having it in her hands, especially her right thumb. She is right handed. Since I started having knee issues she has recently had similar complaints with hers and will empathize with what I go through. She says she feels for me having these kinds of pain and issues at 47 (starting around 40) vs her having same sort of trouble in her 80's (she is 83).
My daughter continues to ask why it is that genetics always seem to pass along the bad things and how lucky she is to appear to be in line to inherit all sorts of lovely things. So far she is lucky (unlucky) enough to have inherited from me (and from my mom) the following:
1) allergy to adhesive - like the adhesive on band aids (not latex, just the sticky stuff).
2) large breasts (I had a breast reduction 3 yrs ago - best thing I ever did and wish I could have done years prior, and she is jealous that she can't do the same yet, and my mother also says she wishes she had known of such a thing years ago, but feels 80+ is too old to do anything now).
3) large thighs - goes with the body type in general I guess that has been passed down. My mother in her youth had a model perfect body apparently - the large breast, small waist, and larger hips, and big thighs (doesn't show much in the pictures from the day due to her normally being dressed in dresses or skirts). So even when she was actually on the skinny side she had large legs. Me, I've never been accused of being skinny, and currently could stand to lose extra pounds, but even when I was thinner, I had the large breasts and big legs, and now my daughter follows along. Her larger than most girls thighs were well muscled and of benefit when she used to swim (the large breasts that developed soon after however were more of a detriment.)
4) while she hasn't developed it yet, we already know that Rosacea runs in the family. Mom has it, as does both my brother and I.
5) Strange immune system things - Dad had Gilliam Barre syndrome (which ultimately rushed his death several years ago), I of course with MS (diagnosed in 2009), and my daughter who had spinal meningitis at 18 months.

Knee surgery, recovery

2010-05-01T13:58:00.000-04:00

I had the arthoscopic surgery on my right knee on Thursday. Outpatient, the surgery took less than an hour I think. I was told to bring my crutches but didn't need them. They want you up on your feet soon as possible. It appears I worried myself silly over nothing really. I was worried that my unstable left knee wouldn't be able to pull the slack during recovery etc. But I'm in virtually no pain. He told us that it might be like that, since he cleaned out the debris, and cleaned up the irritants, he said my knee might actually feel better after the surgery and not have the sore aches and pains normally associated with surgery. I can walk pretty much normal, even take stairs slow. It aches a bit at night or if I've been up on it for a while - due to swelling but if I keep it iced and elevated it is great. Last night I think my left knee bothered me more during the night than the right.

M is saying maybe we should have had this done a long time ago, and maybe need to go on to have the left one done. Maybe. My concern on the left is that it is not just the pain but the instability. Which I think is due to the ACL injury years ago that was never repaired.

Anyway, it is a good day. The sun is shining bright. A little too hot, but the breeze feels good. I'm sitting out on our deck enjoying it - at least for now, until I get too hot out here and/or the breeze dies down. I'm one of the apparent lucky ones with MS that isn't that effected by the heat. I'm more effected by cold. Doesn't mean I like being hot or don't get uncomfortable from the heat. I just don't have some of the issues a lot of others have with the heat.

M went riding again today. I feel like I should be ready to join back next weekend or so. W went over to the rentals to work in our garden. The rest of the house is being lazy - the dog thinks it is too hot out here and went back in. The cats are sprawled in various locations around the house finding some warm sun to nap in. This is just a good lazy saturday.

Saturday Bike Ride

2010-04-27T12:29:00.000-04:00

This past Saturday the weather cleared enough in the morning for us to a short bike ride. W is in Colorado so he missed it, but I went with M and her sister and a friend of her sisters to ride back at City Island. I did promise M that I would walk my bike up the steep ramps along front street (just in case - after all this was the site of where I broke my ankle the last time I was on my bike back in January.) The weather was nice, although the wind was strong toward the end. I did 7.9 miles, actually closer to 8, since the odometer rolled over while I moved my bike around before putting it back on the rack to head home. So I think I did pretty good.

M & the rest did a lot more than I did. There was a crowd at City Island so they opted to take the regular bridge (with the cars) instead of the walking bridge. I wanted to take it easy while I got over the fear of falling off my bike so I decided to just ride around the Island a bit and by the time I did that the walking bridge traffic cleared so I went across that. I met back up with the others briefly but found I had trouble keeping up. So let them go on without me and took my time. I met back up with them later. I know the last 3 miles or so were tough. My muscles really felt it. And my left knee. In spite of getting another injection last week. M was concerned and hung back to make sure I made it back to across the walking bridge because she figured I had to be tired. I am very lucky to have someone like M in my life. I'm sure I don't tell her that enough.

Riding felt good. I had a little trouble starting off - feeling a bit wobbly (ok a lot wobbly). I had a couple moments of panic trying to push off and or stop when I didn't have the strength in my left leg to get the bike going and was wobbling along with the voices in my head saying "don't fall... don't fall... you going to break something again if you fall..." So getting past the fear was kind of a big thing. I hate being afraid. I don't like being afraid of anything. Sometimes I look back and think what happened to the younger me. The one that wasn't afraid, and the one whose body hadn't yet started to betray her. I could run, jump, climb, even crawl. I played sports, and didn't have to think ahead as to where I was walking, watch my balance (I wobble walking sometimes too - not just on a bike). I can't squat down, my knees can't deal with it. I have trouble kneeling and/or crawling on my knees for the same reason. Run? forget it! And now since falling off the bike a couple times and breaking my ankle the last time, a part of me knows that fear is something real, not just in my head. I do need to watch out, and think ahead and be careful, and try not to fall. So the fear is there, and it has grown. Bah!

M & I are planning a trip in July to Ohiopyle. We will take W with us, JJ is going to house/dog/cat sit for us. We are taking the bikes, and will ride some of the rail trails in the area. I'm excited about the trip. I'm hoping I'll be up to do the trails and will be able to keep up. I am a little nervous about the surgery this Thursday and how quickly I'll be able to recover. Mainly I'm worried that my weaker left will be able to handle doing all the work for a few days - going up/down stairs when I get home from the surgery, etc. I'll just have to tough it out I guess. M also wants to go white water rafting while we are at Ohiopyle. I went once years ago (over 30 yrs I think). I think it will be fun, but I'm nervous about that too. She wants to do the upper yough which is the toughest. I am being nervous Nelly and think of all that could go wrong. I miss the me that was adventurous and unafraid. And most of all strong and pain free.

Weekend Getaway, bikes, and things

2010-04-21T19:49:00.000-04:00

This past weekend M and I went down to the shore. She rode in the annual Ocean to Bay ride, 25 miles. I am really proud of her. Just think last year neither one of us was riding at all. And this past Saturday she rode over 30 miles altogether. I really wish I had been up to riding as well, but I was afraid to try it. The ride looked great though very little grade. Which is really great for me. We have plans to do it again next year. It was really nice chance to get away from it all too. Good to have a break from work. Good to have some time together. The weather was great. Just a great weekend.

Actually I am a afraid to get back on the bike. Afraid of falling again. Afraid I won't be able to catch myself if I tip over. Afraid to get hurt. I hate being afraid. Seems as the years go by, I lose more and more. I thought it was a part of getting older, but now, I guess it is much more.

I am still doing the Physical Therapy. It helps. I can tell I am re-gaining the strength in my left knee and ankle, the range of motion in my ankle is almost back to normal. I still have trouble with stairs. My knee can't quite pull me up going up steps and my ankle hurts on the way down. My therapist told me today that that is also a function of my lack of strength in the thigh muscle which effects my ability to go up and down. The muscle gives way, and so i feel it in my ankle. Makes sense.

I saw my orthopedic dr last Friday. He said I was back too soon to get new xrays of the ankle. But we talked about the ankle and it seems to be doing fine. Then we talked about the knees. Basically it isn't anything we didn't already know. According to him my knees are well into their late 60's. My actual age is 47. People don't seem to think I look it. I tell people I have a 25 yr old daughter and I'm told there is no way. I guess that is lucky. I don't really have wrinkles. Probably partly due to being overweight. I don't have any grey hair. My mom didn't really go grey until she was in her 60's and then it looked like her hair was frosted. My dad was the same way. I do have liver spots on my hands. so my skin looks old. Anyway, I also talked to the dr about scheduling the orthoscopic surgery on my right knee since my kneecap is driving me nuts. It is very hard to sit still for any length of time. So he gave me a cortisone shot in my left knee to see if that would help it. Normally the shots do help it. And we scheduled surgery for next Thursday 4/29. I hope I'll be ready. But the plan is to get it done and move on.

I have no idea if I will be able to get back in shape to do the MS bike ride in July but that is still my goal. M says I will make it.

MS brain fog...

2010-03-22T11:33:00.000-04:00

Speaking of worrying about MS related things. I find myself wondering whenever I have trouble remembering something if it is a MS thing. I always considered myself very intelligent. If anything smarter than most. I like to think I'm not arrogant or conceited about it, but in the past my brain always worked quicker than most people. I could look at a problem and skip past 1/2 the steps and see the solution. I'm a problem solver. It is part of what makes me good at what I do for a living. All through out my education I was good at math. I was able to clep out of several general ed, basic math and even algebra and trig classed, and jump right into taking advanced calculus without breaking a sweat. I could do math in my head without any trouble. I still can, but sometimes my brain feels like it is in a fog. what used to come without a struggle now is like wading through molasses. It's disturbing.

This weekend brought it to my attention more than normal. We had gone out for a couple beers with a friend and I tried playing a game called 21zip or something like that. It is a video card game based on blackjack. There are 4 columns that you can play cards on, the object is to play cards from the deck on any of the 4 columns so that it adds up to 21 which clears the column. obviously you can't go over 21, and you want to play as many cards in the deck within the time limit. Plus you get bonuses for the number of columns you clear and the number cards you play etc. It isn't hard, it mainly requires that you can do math in your head and/or spot patterns of what cards to put together to make 21. Well, basically I sucked. Something I once would have found so easy, and my brain sits there staring at the cards going "Duh..." And no it wasn't the beer. My friend kept helping out and pointing out plays, which helped, but I basically felt like an idiot.

The friend even brought it up to M the next day, and said how surprised she was that I wasn't any better in Math than that... and mentioned something along the lines of thinking I was smarter than that. Wow. I really thought the same thing myself. What the hell happened? I tried talking a little bit about it to M but she seemed to think it was perhaps an off night, and just mentioned how perhaps I needed to do more things to exercise my brain.

So, what I don't want to do is to just shrug off every little thing that pops up as being, "oh that must be MS". As in, I feel tired today - oh that must be MS Fatigue. Oh, my brain is struggling today, that must be MS. Oh i'm tired and my brain is struggling that must be MS. who knows. maybe it is all related.

broken ankles, getting back on the bike....

2010-03-22T10:36:00.002-04:00

It's been a while since I posted. I'm still healing from the broken ankle - I have taken the walking boot off. But I can tell that ankle is weak. It gets sore when I use it, I'm going to have to work at it to get the strength back on that side. Between the left knee and the ankle that is definitely my week side.

I go back to the Dr this coming Friday to have a new set of x-ray's and to make sure all has healed. However this weekend was 9 weeks since I fell and broke it, so I decided it had been long enough. I was supposed to have gone back to the Dr on the 15th and have the x-ray's and find out how the ankle was doing, but between a combination of not getting enough sleep over the weekend, having brain fog over the daylight savings time change and somehow screwing up my alarm, I over-slept. I called to re-schedule and was given a Friday appt. Silly me, I thought we were talking about last Friday (3/19) and only found out that it was not until 3/26 when I showed up only to find my Dr wasn't in. Since it had been 8 weeks on the 14th, and almost 9 weeks by the 19th, I decided I didn't need to wait for 10 weeks to take off the walking boot and that maybe it would be better for me to start using it. I've just taken it easy on what I've been doing.

I have discovered that walking around on bumpy terrain is a challenge. I feel really unsteady, part of it might be the MS, part of it the weak knee that sometimes feels like it will just "go out" without warning. Some of it is that the ankle isn't sure about twisting in all sorts of angles and directions and still holding up my weight. When I see the Dr I am going to request getting some PT to try to work on strengthening it.

I also am really nervous about getting back on a bike. Getting on it and riding is fine. That I can do. It is the "stopping" and getting off that worries me. That and how to face going up a hill. What if I get part way up and realize I'm not prepared and can't finish it. So far I haven't been real successful on stopping without falling off. Falling off and bruising my pride is one thing. Breaking ankles is a whole other thing.

MS-related Bloggers requested to answer survey questions

2010-03-22T10:13:00.000-04:00

From Lisa's Brass and Ivory site, I'm reposting a request for responses to a Survey:

Calling all MS-related Bloggers to Answer Survey Questions

Posted by Lisa Emrich on Saturday, March 20, 2010 at 10:11 PM

I received a request from the National MS Society (US) to encourage as many MS-related bloggers as possible to respond to a survey regarding finding information online. Within the fall edition of the magazine Momentum will be an article - "Multiple Sclerosis: Surviving the Information Age" (tentative title).

Short synopsis: The Internet offers unprecedented amounts of information. It’s a boon and a minefield both. How are people with MS managing it? We’ll ask some MS Webheads and some experts on health information about facts, rumor, opinion, and challenges to received wisdom. We’ll also explore how people stay calm when faced with too much information.

The 10-question survey is meant specifically for bloggers but is not limited to those in the US. If I have your email, you received this same request. I do not have emails for every MS bloggers (not even close), so I ask that you pass this request on....perhaps posting it on your blog.

The NMSS is hoping to get as many responses within the next week as possible.

Here is the address for the survey:

http://www.surveymonkey.com/s/MSblog

Thank you!!

Lisa Emrich

staring at the walls, recovering

2010-01-23T18:00:00.000-05:00

So it has now been a week since I fell off the bike. I'm still hobbling on crutches (doc did say it would be 3 weeks), I can now put some weight on my bad leg if I use the crutches to distribute the weight. W says it would be easier with a walker, he's probably right.
I'm getting a bit tired of staying in, but yet don't quite feel brave enough to face the stairs. We live in a split level, and I managed to drag myself up to the main floor last saturday with sheer determination. I think I can get back down now if I use the crutches right, and slowly make my way down. Getting back up again will be harder, but guess I can always do the same butt scoot I did the last time.
The team went out for another bike ride today, I am sorry I missed it. They went about 12 miles around and near wildwood park. Since it appears we can't go without having some form of excitement, W was the designated clutz and fell off his bike while going up a slight incline. He said it was similar circumstance in that there was dogs involved and he didn't shift down enough to make the hill. He rolled down an embankment and avoided going in the pond thanks to a wisteria bush. He's ok, just a little sore.
I am sort of dreading going back to work this coming Wednesday. Not only will I have to drag myself across the parking lot to the building, (now is when one of those handicap things would be handy), but then I will have to be there all day. I find that my routine here involves short time spans of working in my office (organizing my desk, wasting time on facebook and other things that take up exorbitant amounts of time), and sitting in the recliner in the living room and either reading (mostly), watching tv (not so much), or napping (popular especially in the morning or late afternoon). I won't have those options while at work. I will have to somehow stay focused and working at my desk for 8 hrs. I was also talking about it to M and mentioned that I wasn't even sure what I would wear. She wanted to know what I meant. Well, I can't fit a shoe over the aircast and don't want to go all day and/or do that much walking wihtout it. She said just put a shoe on my good foot and leave a sock on that one. I guess. Did I mention that it is a big parking lot? I think I may park in one of the visitor spots that are about as close as the handicapped. Although they are often taken. Most of the handicapped spots are always open, with only one or two having any cars in them.
M says to quit worrying about all that until after I see the dr on Monday. I guess sometimes what drives me the most nuts is the unknown. But since that is such a big part of MS, I guess I need to get used to dealing with it.

Clutz.... How not to fall off a bike

2010-01-17T13:53:00.001-05:00

Well the weather has warmed up here in central pa and we had a "heat wave" of 40's to low 50's weather. Great stuff. The cold effects me much more than hot weather.
The weather was so nice yesterday that we decided to go biking. M's sister got a new bike for Xmas, and she was itching to ride. So we went headed off from city island across the bridge and down along front street. I'd gotten a face mask which worked out great M teased me and called it my hannibal lecter look. But it worked great. The under armor pants and new bike shorts were great too.
I had gotten a second bottle cage for my bike for Xmas and had two bottles with me. I brought gaterade g2 instead of just water and it seemed to work well.
We went about 11 miles. I even was able to make it up the big hill ramp at the end of the path by the river closest to rail trail. I'd always had to walk it before. So I was feeling strong. It was a great ride. We started to ride on the rail trail but W was having trouble with his wheels bogging down so was M so we decided to head back toward the island. On Way back M and her sister were a ways ahead of me and I watched as they went up the ramp near the bridge to the island. A couple was there with their dog and the dog lunged and the woman had trouble controlling it. As I came up to the ramp I was watching them get the dog under control and I was busy thinking about that and didn't gear down enough to prepare for the hill. Soon as I passed the couple I knew I was in trouble. So thought i would have to stop and walk rest of way. I need to figure out a better way to stop on a hill. Last time I did that on a hill on city island I fell and strained my wrist. This time wasn't any better. I went to stand on my left leg and my trick knee went out. And down I went. Hard on my knee. Twisted my ankle and rolled down hill in process. As I lay there thinking how stupid. And what I should have could have etc. The couple came back to ask if I was ok. And wanted to help me up. I said I was ok and they didn't need to call anyone that I was riding with others. I was laying on my back thinking I may have broke something this time. M and her sister came back to check on me. W was there pretty soon too. I tried to get up on my own and knew my left knee and or ankle was really bad. They had to pull me up. I couldn't put weight on my leg so I used M and W as crutches and hopped (very slowly with several breaks by this point I was exhausted and had no reserves) to the top of the ramp to find a bench. They went back for the pilot to come get me.
They wanted to know if I wanted to head home or ER? I opted for going to OSS urgent care down in York. They have my records and is where my osteo is. I think it was good choice. The wait was less than at hospital ER. They took xrays of knee and ankle. Saw the doc on duty and he said I have a hairline fracture in my ankle and twisted hell out of my ankle. Also bruised the hell out of the tendons below my knee knee cap and had a hematoma (blood pooling right below kneecap making it look that much more swollen.) prognosis is that I'll live, it could have been much worse. But could have been much better. He said i'd feel the worse the day after and day after that. I'll be on crutches and using an air cast for about 3 weeks. I have pain pills and need to keep leg elevated and ice on ankle and knee.
Using crutches sucks. The nurse that gave me brief instructions on how to do it mentioned thst i would find using them is exhausting. Very true. M keeps after me to make sure I keep going. A combination of trying to keep me motivated and moving since I have to to get to wherever I'm going and partly that she really doesn't get the exhaustion. When my reserves are gone. I have nothing left. Just grit and determination. And i become even more unsteady unbalanced. Not good for a gimp on crutches with one knee and ankle already screwed up.
So now I'm home and recovering. Looks like I will have to postpone the arthoscopic surgery on my right knee until this clears up with my left leg.
There has got to be a better way to dismount off my bike if I get stuck on a hill and can't make it up. This fall and roll is just not working for me.

MS bike ride, getting involved

2010-01-09T13:43:00.000-05:00

One of the incentives of trying to get in better shape, is that M is determined that we participate in the MS Bike Ride this year. She wants us to form a team, the two of us, her dad, her sister and her partner would be members (least at the moment). The ride near us is June 24 & 25 from Paradise and back. For more info see: bike MS: To Paradise and Back 2010. Sounds ambititious. When M first looked at it, she wanted to plan to do 150 miles - 75 each day and go for broke. Considering we just got back on a bike this past summer that seems a little over the top to me.

After checking into it finding out more details, we discovered that in ordre to register you have to pledge to raise at least $150 if you ride 1 day, or $250 if you ride both days. Both days they have 25, 50 and 75 mile loops that you can ride. If you form a team, then each team member still has to meet that minimum individually. I'm not sure we will have a team. But I do want to do the ride. Right now we are talking about just doing 1 day, and we can wait to decide how far. M is now thinking maybe going for 50. I'm thinking I'm shooting for 25 to start with. The money raised goes to local programs and services for the local chapter(s) of the NMSS (National Multiple Sclerosis Society) and to research. I think last year the Paradise ride was co-sponsored by Central PA and the Greater Delaware chapters. I didn't know anything about it last year. But then I didn't really know anything about MS last year.

Once we have registered and I can figure out how to link that to here, I will post where someone can go in and pledge to sponsor me or my team.

Right now I'm working on trying to get in better shape so as to survive 25 miles on a bike at the end of June. I only went a couple times out around locally before winter and we averaged about 10-12 miles so I think 25 is do-able. I'm hoping that if I have the surgery (or for that matter if I don't) on my right knee that it won't effect the plan for us to ride.

Bees Knees

2010-01-09T13:26:00.000-05:00

It seems for me, the odd years (2007, 2009 for example) have been the years that I've had various medical issues, found out that I have various things wrong with me, in 07 I had a couple minor/major surgeries, in 09 I found out among other things that I have MS. I also found out that I had nodules on my Thyroid (found during MRI scans that were for the diagnosis of the MS), I still no nothing for sure about the nodes, other than I get to go back in 9 months for another ultra-sound and that my dr wants to take the wait and see approach.

I also found out in 09 that my "good" knee actually is more bone on bone with Osteoarthritis than my "bad" knee. I still think of it as my good knee since it is still the stronger and more dependable one. What sucks is that since it's got arthritis behind the kneecap it is the one that aches the most at the moment, the other knee is manageable with periodic synvisc shots (at least pain-wise, it still threatens to just "go-out" on my for no apparent reason when I first stand up).

My bad knee has caused me to do my impression of a drunk at a local bar on more than one occasion. I don't know why bar/restaurants have the tables with the high stool seats? I sit for very long on those, and when I stand, I never know if my knee will work with me or not. Just recently, right before the holiday's we had gone out with M's sister and her partner for wings and I went to stand to go to the restroom and I felt the knee go, so I just rolled with it and landed on my back looking up at a couple that were waiting to be seated. The guy was very helpful and concerned and help me regain my feet.

Having lived with the "bad" left knee for the last 8-9 years or so, I was very unhappy to learn last year that my "good" right knee was actually in worse shape. My osteo doc says that xray's and tests are deceiving, that what matters is how they feel. True. And that would be fine if the right knee continued to feel ok and not bother me. But that arthritis behind the knee cap is annoying. It makes it hard to drive for long distances, I want to shift my leg around and find a position that doesn't ache and I can't. My doc calls it "movie theatre knee" because people that have it can't sit through a movie. I also can't sit still through lunch and pity my lunch companions that are unlucky enough to sit across from me. They know when it is worse than normal, guess the kicks in the shins are a good clue. It also wakes me up, and keeps me up at night. Which I'm finding with the MS, interferring with getting enough sleep is harder to overcome than it used to be.

I'm used to dealing with pain, working through pain, but this kneecap thing is something different. I am sure it is not the worst pain I've ever had. It is just the most annoying. And it is getting worse. The shots don't help like they did on the other knee. I saw the ortho doc and he says there is little else to do at this point. As he said, we have talked about the fact that what I need ultimately will be to replace both knees (initially 8 yrs ago it was just the 1, now it is both). And that what we need to do know is to do what ever we can to put off when we will do that. You may ask why? I know lots of my friends did. Well, in order to do the surgery to replace a knee, they have to trim the ligaments and tendons and use them to attach to the artifical knee. Unfortunately the ligaments and tendons are something that the body will not grow longer, so apparently it is only possible to do 2 replacements of that knee due to the length of these. Replacement parts are improving, and the titanium they use for the knee itself is very good and lasts a long time. Unfortunately the plastic they have to use to simulate the cartiledge is not so good and only has a life span of 10-15 yrs. They are finding new techniques and plastics so that might change but they haven't been in use long enough to really know. So the long and short of it is that they don't like to do knee replacements on anyone until they are at least in their mid- to late 50's. I'm in my 40's.

When I saw my dr this past week, I pointed out that I was now in my late 40's - 47 to be exact. But he said he would really rather it be at least 6 yrs from now if not closer to when I'm 55. I can see the point - worst case (have to look at worst cases, because I've found in my life and in my family they often come true - prepare for the worst and hope for the best), I could have a replacement today at 47, have it only last 10 yr, and get my 2nd at 57 and now if it lasts even 15yrs, that will put me at 72 and unable to walk. Not bad maybe. However, my dad was 79 and would have continued on if it weren't for getting GBS (Gilliam Barre Syndrom) at 76 and never completely recovering from it. My mom is still going and is 83. Course if that 2nd knee only made it 10 yrs, I'd be 67 and unable to walk. Not good. I explained this to an acquantance and her response was, well, then at that point why not cut your leg off and get a full leg prosthesis. Hmmmm. Yeah, why wait, do it now?

So my doc offered that our other option at the moment for the pain-in-ass kneecap was to do orthoscopic surgery on it, go in with a camera and clean out any irritants, loose cartiledge, and smooth any rough spots and arthritis. This could help and is less invasive and easier recovery than a knee replacement. The knee would be sore for a while, and I would be on crutches for a bit. Since I work as a network engineer and sit at a desk behind a computer most of the time, I would only miss 3-4 days of work. Risk is that it might not really help all that much. Or it might not last that long.

So, I spoke with my big brother, who is a cardiologist, 11 yrs older than me, and who I trust when it comes to medical delima's and asked for his thoughts. His take was that this wasn't his field, but based on what his friends (in the field) say, my doc is right, we need to wait on the knee replacement. B says knee replacements are still in their infancy. Hips and other things (shoulders?) are well established. Knees are different, partly because of the need for the plastic which we haven't discovered something that holds up well or long enough, because of the only being able to do the replacement 2x in a person, etc. He said his guys say that I would be best to wait until I'm at least "HIS" age - as in 58, before thinking about a replacement. His suggestion was that if the knee was giving me fits, he thought the orthoscopy would help, and anything to delay the replacement was worth doing.

So everything seems to lean toward doing the orthoscopy. I'm afraid though. That's my "good" knee. The dependable, stable one. It may hurt but I can count on it. The other one isn't in pain at the moment - it will in about 6 months or so, start aching and then it will be time to think about another round of shots. But even though the left doesn't hurt, I can't count on it. It might fold. So contemplating having surgery on the good one, and having to depend more on the bad one is a bit scary. I mean I depend so much on that right leg. It stablizes me when I first stand up, until I can feel that my left will carry my weight. That's the knee I kneel on if I have to kneel down (I don't recommend it with knees like mine), and I even kneel on it on the bed each night to climb in. So many things currently depend on that knee - old dependable. "Old" being very fitting in that my osteo says while I might be 47, unfortunately I have the knees of a 67 yr old. I'd like to find her and swap back...

This morning, my knee is really bugging me. I'm having a hard time sitting to write this. I stretch it out and prop it up and that's ok for a while (like 5 min) then i have to move it. I get up and walk around. I sit down to work again. For another 5-10 min. That is like my typical morning or afternoon at work. when the knee flares up, I can't find a "happy" position. Excersise doesn't even help either. My left when it starts flaring is helped when i get on the bike and ride for a while (either the excersise or real doesn't matter). I try that but doesn't help with the kneecap. In fact it stays irritated when I'm riding. So I try to ignore it. I did ride the excercise bike this morning about 15 minutes then i gave up. I also did 15 minutes on the wii fit. I'm trying to get in better shape (one of my "non-resolution" intentions for 2010).

If the knee keeps up I guess I will proceed with orthoscopy. If that works, then I'll still be able to depend on my stable knee and it won't drive me nuts. So if I look at it that way it could be a win situation. Least enough to buy a little more time.

A New Year, Time for New Resolutions

2010-01-09T12:49:00.000-05:00

It's a new year, 2010. Start of a new decade. New Years is always the time for new resolutions, everyone makes plans and states their good intentions, many of which fall by the way-side soon as they are spoken. For that reason I prefer not to make any new year resolutions, and just state that my intent is to make this a better year.

Procrastination (also known as why it is hard to post to your own blog)

2009-12-16T15:29:00.002-05:00

I’d like to go into a little more detail on why I think it is hard to come up with this to post about on this blog. I started this in order to provide myself a place to vent about a disease that I know next to nothing about, that I’d really like to just whine about (why me?), and my thought was that by having a place to put words down I could process my thoughts and somehow make it all make sense.

I’m finding that no matter how much I process, or how many words are posted, I really don’t think any of it will ever make sense.

I have been taking time reading others blogs. I’ve found several that I really enjoy. That in and of itself can take days or hours or weeks of wasted(?) time. Actually I really don’t think of it as a waste. I have found several blogs that I really like, I especially like those with a sarcastic wit and/or a wicked sense of humor. I never have really been able to take the sugary sweet saccharine people with “Miss Suzy Sunshine” type attitudes, so while I’m currently reading anything and everything I can find, those are the ones that I most likely won’t bookmark or return to with any frequency. It’s one thing to be straightforward and truthful and be “nice” without trying to sugar coat everything. Lots of time in life there is no silver lining. And that light at the end of the tunnel – it is probably the freight train to hell barreling its way right toward you. But that is my pessimistic outlook for you. I often say I’m an optimist – I’m positive that something will go wrong.

So anyway, there are a handful of blogs that I have found and have spent the past few weeks going back in time to read from the beginning. I feel like a voyeur. By reading all these thoughts and comments and responses to comments posted on these people’s blogs, I now feel I have gotten to know them. They almost feel like “friends” to me. There are one or two that seem to have the same type sense of humor I do (a little off), there are some that seem genuinely nice. Several I think I would feel honored to have as a real friend. I’ve been a member of a couple online communities before, but those are different. Those, I’ve gotten to know people by posting and reading posts and there has been a two way exchange of thoughts and ideas. I’ve gotten to know them, while they have also gotten to know me. Some of those I have later met in real life and are now considered my friends. This blog thing is totally different. I have read all these things that now make it seem like I know them. But these people don’t know me from the man in the moon. In a way, I almost feel a little like I am an outsider that came to the party late. Some of the blogs I have enjoyed the most seem to have either started around the same time, and/or the writers have since gotten to know each other, and will comment on each other’s blogs. Making it part of a community. A community that I just moved into and don’t know a soul. Sort of like when I was back in school and had moved to a new town – I always hated trying to make new friends and trying to “fit in.” That is just part of my introverted personality. I’m fine once I get to know people. It is just a matter of trying to figure out how to break the ice and meet them. I’ve always managed to find friends and have many good ones. I just have never really fit into any of the clichés and always do better in groups of small numbers or one on one. I’m not sure that is such a bad thing.

Another thing I’ve noticed is that most of the MS blogs are all being written by bloggers that have a more accelerated form of MS. That might be an oversimplification, but it seems that a lot of you have either pretty serious health issues, or pretty serious relapses that you deal with. I don’t know yet at this point what I have. Since I was just diagnosed, I haven’t had a relapse at this point. I have some things I think I could point to in the past that might or might not have been caused by MS, but nothing concrete. The symptoms that led to me going to the Dr’s having the MRI’s and eventually getting the diagnosis started back in July. Some of them have cleared but I’m definitely not 100%. I’m not back to normal – what is normal any way? According to my Neurologist, I am better the beginning of Dec than I was back in September, and better still than I was in October. So I guess I’m continuing to slowly slowly slowly regenerate those nerves. So while that is annoying to me, and seems to be a long painful process, I’m not sure it in anyway compares to what some others have dealt with or will deal with. I read something on someone’s blog back when they were first starting their blog (forgive me as I paraphrase/plagiarize a thought since I can’t possibly remember where I read it) that they were sick and tired of reading about people that didn’t have it as bad as them. About people that were showing improvement and/or the meds (crabs etc) were working to keep things under control. Well, I guess we all are looking for someone or something that makes us feel like we aren’t so different ourselves. It seems to me that most of the blogs are by people that are more like this person than they are like me – I really haven’t read that many (any?) by people that seem to feel that they have things under control, that they are continuing to work. I guess I want to know that “it’s all going to be ok” that things don’t have to keep getting worse, and that sometimes things might even get better. However, I’m not sure that is how things work.

So, anyway… for all of you that I have been reading and lurking on your pages and now feel like I have gotten to know you, thanks for writing. Thanks for sharing. Thanks for letting me peak in, even if it is from the outside in through a window. I never thought I’d be a peeping tom or a voyeur, so I think I’d rather think of myself as just a Lurker. I will post someday – if I ever feel I have something worthy enough to say. I doubt any of you are reading this – but if you are, thanks for stopping by. I welcome any feedback or thoughts whatever they may be.

Catch up (ketchup, catsup)

2009-12-16T14:42:00.002-05:00

Note - thought I might need to clarify the heading. I was just using a play on words with the catchup, catsup and ketchup. I never did really get what the difference between ketchup and catsup is - something to do with one being much sweeter?

I don't know how others do this; keep up with their blogs on a daily or even weekly basis. I have lots of thoughts, and thought I would be able to find 10-15 minutes here or there to do an update. But that doesn't appear to be working out.

First of all work seems to be the biggest obstacle getting in the way. Damn the luck, I do have to focus on that since it does pay the bills and especially pay the mortgage. We couldn't make it without my income without making lots of drastic changes. And while there are some days that I really do wish I could retire early and not drag my sorry butt into work, I know that I am fortunate enough that I a) have a decent job, and b) still have the ability to do it.

Since I have posted in a while I'm just going to hit some of the high-light’s, or low life’s, depending the perspective.

1. The biking is temporarily on hold - cold weather has crept in. If we do have some decent (no rain/sleet/snow, dry days we might bundle up and try to head out on a Sat or Sun. I really like the bike and am looking forward to when it does get warmer and we can get out more.

2. The bruising seems to have cleared up somewhat, only change is that I drastically dropped the amount of Advil I was taking. Which now my knees bother me some, especially the right - which has the arthritis behind the kneecap. But I don't know if that is due to the Advil or not. That knee basically never stopped hurting even when I did the recent round of Synvisc shots. The other knee isn't so bad other than usually aches and pains especially on cold damp days.

3. The thyroid thing - don't remember if I mentioned that, but after the round of biopsies, the results were inconclusive so the Dr now just wants to wait and monitor for the next 9 months - I go back next Sept to have another ultrasound and see if the nodes are growing.

Black and blue

2009-11-18T11:56:00.002-05:00

I've noticed over the last couple weeks that I seem to be extremely prone to dark purple black or blue bruises. All over my legs (the worst) some on my arms and a few on my torso. They look terrible. I know some of them are because I am such a clutz but that doesn't explain the extent or the depth of color. I searched a little online and see some people believe that bruising is related to their ms. Others think it is related to there dmd of choice.

Perhaps. The bruising certainly is beyond what is normal for me. But M helped me remember that bruising was what started this summers roller coaster of dr visits. She's right way back before I saw the dr and had the first blood workup that said I was a diabetic in training, I was bruising more easily. Went to dr on theory that the dr could find a cause and get it fixed. Guess it is now full circle. And I still bruise and have no idea why.

For some reason it did seem to clear up over the intervining months. And now it is back and worse than before. Black and dark purple is the new me!!!

Diet, Bikes and exercise

2009-11-17T12:31:00.001-05:00

This summer I was full of good intentions. I joined weight watchers and started counting points with my daughter J (24). She did great, the first week I think she lost 10lb. I say it is easier when you are younger. I started out pretty good, I lost about 5 lb the first week, and gained 1 or 2 back then lost again, and then it seemed like the bottom started dropping out of my world. First I found out that my blood sugar levels are elevated. Need to watch my diet and exercise more. It seems my fasting blood sugar is hovering around 130 which is high. My A1C is 6.0 +/- is not so bad. So basically I need to start watching what I eat. Went to some diabetes education and nutrition classes. Learned a lot so that was good. But it seemed like I kept going to the Dr and hearing things I didn't want to hear - and I rebelled as a result. So I sort of was a weight watcher drop out and went on and ate unhealthy stuff - part of which I suppose was a poor poor pity me approach to all the news I was getting. Strangely enough when I had the blood tests 3 months after eating even worse than I was the 3 months prior (when i was "watching" what I ate), my fasting blood glucose was down a couple points and my A1C dropped about .3 points. During the diabetes classes I had my blood sugar tested (in the afternoon not long after eating a not that healthy lunch and a snack of fruit) and my blood glucose was only 86. Apparently the thought now is that my liver is producing glucose while I sleep and then my body doesn't know what to do with it.

So anyway, fast forward a couple months, now I've been diagnosed with MS. My neurologist tells me I need to watch my diet and need to exercise and be more healthy. My regular Dr tells me I need to watch my diet and exercise to watch that my blood sugar doesn't get out of control. I'm seeing a trend here. Everyone wants me to suddenly become more healthy. Actually so do I. I have pretty bad Osteoarthritis (bone on bone) in both my knees. My orthopedic surgeon says I should lose some weight and it would help my knees. Personally I know that when I am exercising and am at least a few pounds lighter then I feel better. So its time to do something about all this again. So my goal now is to get back to watching what I eat. I like food so eliminating it all is not an option, I need to do something that I can live with long term not a quick fix. So I need to start watching portion sizes - that I believe is the big thing. And go for more of the healthy stuff and limit the not so healthy. It won't be an over night change but I think I am ready to tackle this again. I was doing pretty good before I started finding out about all these other health issues.

The other part of this is exercise. M and I went bike shopping on Saturday. Learned about what kind of bikes would work for what we wanted to do. And unfortunately we could only find one such bike in stock, so she bought a new bike. On Sunday we went with W and took the dog to a local place with bike/walking paths and M and I took turns with the bike, and the dog. We all enjoyed being out and moving around. The weather was great. I ended up doing about 6.5 miles on the bike - not bad for not having been on one for several years. Now I'm all revved up to get my own bike. I ordered it yesterday, they say they will have it by the end of the week for me to use it next weekend. This is going to be a good thing. The biking felt great. My knees were a little stiff yesterday, but actually the exercise is good for the arthritis. The only other thing I noticed was that I need to bring more water - I was very thirsty and finished my bottle and part of W's. I have trouble with hills if they are very steep, still getting the hang of shifting down and I seem to run out of steam. Also seems to relate to the dry mouth feeling and needing more water.

I think the biking thing is going to be a great activity for all of us. W loves it, he's been biking for several years and was very into it in Colorado (they are more geared for biking and have more of the bike paths on the major roads etc) than we are in Pennsylvania. I think he's glad to see us getting into not just so that he has some one to go biking with but also because he thinks we both need to get more active. (we do.)

SO... by the end of the week I should have my own new bike, and I'm pretty excited about that!!!

Am I alone?

2009-11-16T11:54:00.001-05:00

I know that it hasn't been that long since I was diagnosed or that long since I've started on MS meds. I find myself thinking and wondering if various symptoms I have are MS related or just unrelated stuff that I've had for some time. I've read a lot online, and realize a lot of what you find online has to be taken with a grain of salt. But I do wonder about what's next or what to expect. From what I read, I'm lucky. I'm not seriously impacted, I have some annoying symptoms but I can live with that. From the way my Dr talks that may be all i have for a long long time. He seems to think that today's newly diagnosed patients aren't as apt to suffer all the severe symptoms and disabilities as those that have had the disease for a long time, and/or haven't taken any of the meds to prevent things from getting worse. yet, I don't find anyone like me online. maybe that is because the ones that are writing blogs and sharing their stories have more to say because they are more affected. maybe the people like me are busy living their lives and working and don't have the time or energy to share their stories.

I understand that no two people have all the exact same symptoms - this is a very varied disease that impacts each one of us differently. So for now I just count myself lucky. I don't seem to be bothered by extreme heat - at least not completely. We have a hot tub - that we just put in within the past 3 years. I love it. It is great especially for my arthritic knees. But now I see that so many MS patients can't tolerate hot tubs etc. that it can flare up symptoms etc.

The only time the heat bothers me is that when it is a very humid day i feel very lethargic. Also there are times when i "over-heat" and just suddenly get drenched with sweat. I always figured that was a hormonal thing. And maybe it is.

I've talked to a couple of "peers" - people that also have MS that take the same meds I do, and have found that very helpful, but they have had MS for at least 10 years or more. I have officially had it only a month or two. So they aren't like me... which comes back to the "am I alone?"

The first post - the diagnosis and where it all began (in the middle)

2009-11-13T17:10:00.001-05:00

A blank blog is like a blank canvas, or a blank page, where do you start? Could start at the beginning, but then you have to figure out where the beginning was and all I'm really sure of is that I'm not really sure of anything at this point.

The purpose of this blog is to have a place to post thoughts and feelings, a place to start in the middle (now) and try to go back to figure out what came before and what is supposed to come next. I'm not writing for anyone else, this is just for me. If it ends up being something that other find and/or get some benefit then it will have served two purposes.

Who am I? I'm a 46 yr old woman, single but in a long term relationship. I was recently diagnosed with MS. Multiple Sclerosis. That's something I really didn't know that much about or think much about until 2 months ago. Apparently that is unusual, a lot of people with MS spend years with "maybe MS" and no definite diagnosis. So I'm glad it didn't drag on, but that means it was also kind of sudden, a lot to absorb.

But it has been a whirlwind of medical discoveries this year (2009). First in July, met with my family doctor and had routine blood work and was told that my Blood Sugar levels are a little high and need to be watched. My A1C is ok, but the fasting was close to being something to worry about. As a result I learned a lot about how diet effects your blood sugar and attempted (ok so I like food, especially stuff that isn't that good for you) to eat more healthy. I learned about how unlike what I thought about diabetes as a kid (my 2nd cousin by marriage had type 1 and had to take insulin) wasn't true. I remember back then everyone thought you just had to avoid sugar, but could eat most anything else - including all these starchy potatoes and fruits and carbs all of which convert to glucose and no one knew. Now the key is watching what and how much - portion control is everything. sugar is ok in moderation and you have to know how much and balance it all out. Yes, I now know a lot more about how to eat healthy - I just need to actually practice it.

Not long after I got used to the idea that I needed to watch what and how much I ate and eat healthier and watch my glucose levels so as to avoid ending up with type 2 diabetes, I ended up catching a cold/flu that was going around. I was sick for a couple days into the weekend and missed a day of work then noticed a new symptom over the weekend - bottoms of my feet were numb. Both of them. Which seemed a little odd, but I was still sick so didn't worry a lot about it. By Monday it wasn't any better and I decided to call my Dr. One of my concerns was that about 6 years ago my father had gotten Gilliam Barre from a flu shot. He never fully recovered. So in my mind I was drawing parallel's - he had a flu shot and got this disease that caused almost complete paralysis, required being airlifted to a hospital across the state and spent days in ICU and then weeks in a rehab hospital to learn to walk again. (he did re-learn to walk, and went back home, and then had relapses due to kidney infections due to not regaining complete muscle control of all systems, and was in and out of hospital and each hospital stay he lost a little more ground, until he ended up in long term care and never came back home. So, I had the flu, and my feet were numb... it needed to be checked out. I really didn't think it was the same thing, but couldn't take any chances.

After the typical round of calls to the Dr office and speaking to nurses and then later finally speaking to the Dr and being told to come in this afternoon (a week and half after the flu and first symptoms), the Dr checked my reflexes talked to me about my symptoms at that point it was my entire feet up to my ankles and no longer just the bottoms. It wasn't really that they had no feeling, they were "fuzzy" or tingling. Like electric or static shocks only constant. Never stopped. For that matter it is still there. They checked my reflexes and said mine were brisk, asked if they always were. Had no clue - what's that mean? still had the cough and head congestion too - but since my "mucus" was clear and I had no fever, I was deemed to be ok. They also said since my blood sugar level wasn't that elevated nor had it been for any length of time that they didn't think it was neuropathy which apparently is common in diabetics. So next stop - go see a Neurologist and have a MRI on the way of my lower spine with and without contrast.

That was the second time I've had a MRI of my lower spine but the first time with contrast. First time was about 3 years ago when I had some sciatic nerve pain and they didn't really find anything. So had the MRI and the contrast injection without any issues met with the Neurologist the following week. He does more reflex tests - agrees that my reflexes are brisk, and finds I have the Babinski sign - this means that the big toe flies up when you run your thumb hard along the base of your foot. This reaction is not normal, the normal response is apparently to curl your toes under, mine definitely fly up. At this point the numbness or tingling is on up past mid-calf. I have knee highs on (not literally but imaginary), they feel tight, and tingly. If you touch my skin especially lightly, I feel it like a shock wave that scatters all across the surface of my skin very irritating. He also did pin prick tests - I could feel the stick every where. He did tests with a tuning fork - I could feel the vibrations most places but when he touched the fork to the joint of my big toe, the vibrations mingled with the tingling resonating through my feet and I couldn't even feel it. He also watched me walk and tested my balance (poor - especially if my eyes were closed). I'd noticed that myself, if in the shower and closing my eyes, found that i had to have one hand or elbow on the side wall to orient myself so didn't feel like falling. I liked my Neurologist, which is important. I need to like my dr's and trust them. I think mine knows his stuff, and I like how he takes time to explain things and answers questions. We looked at the lower spine MRI's and he said there was nothing to note on them. The Dr had explained that my problem wasn't peripheral nerve issue that it was in the central nervous system (CNS), which meant either the spine or the brain, some things not so likely in the brain because it was effecting both feet equally and most brain things are one side or the other. Lyme was mentioned, and that it was something that was attacking my myelin, or the nerve shealth in the CNS. He also had mentioned some form of myelitis. He explained about how the myelin acts as the insulation on the nerves much like insulation on an electric cable keeps the wires from shorting out. Ok, so know I know what is going on, my nerves are shorting out. What causes it? He also talked about how normally they prescribe steroids (high dosage steroids) to help alleviate the symptoms like mine - but that since my blood sugar was already near danger zone, he didn't want to do the steroids since that will sharply raise blood sugar levels.

Next he wanted me to have blood work to eliminate Lyme disease, and scheduled a MRI of my upper spine/neck and brain with and without contrast. Had the blood test and heard back a few days later that no - I was negative for Lyme. Went for the MRI but was only able to get it without contrast. They weren't able to "find" a vein and/or blew out the ones they found and were unable to inject the contrast. They were only able to turn me into a human pin-cushion and bruise both elbows and the back of my one hand. Then gave up and decided if the Dr or the Radiologist thought it was necessary they would have to reschedule. Fun Fun.

Went back to Neurologist to see the results of the brain & upper spine/neck MRI's (without contrast). Repeated all the reflex and other tests - at this point the numbness/tingling is now mid thigh, sometimes feels like wearing support thigh highs - there is a definite "tightness" and fuzzy feeling, and the tingling and light touches to my skin still causes my skin to crawl and radiates like electricity, but my balance is better, and actually some of the feeling and the "normal" is returning to my feet. They still feel odd but different and there are places that feel normal. According to the brain MRI i have lesions in my brain. He can't tell if they are active (could have with the contrast but not without), and says they are also called Dawson's fingers. These are also a sign of MS and/or Lyme. I think this is the first time any mention of MS was brought up - althought that is definitely fits the description of a de-myelating disease. I'd already tested negative on the blood test for Lyme. Next step is now to have the spinal tap. This would definitely eliminate any possibility of Lyme (apparently because of taking Minocycline in the past Lyme could have been killed off in my blood by not in my spinal fluid). So that's scheduled the following week. Also, the Dr pointed out that they found a possible cyst of some sort on my left thyroid gland in the MRI of my neck. He said that would be referred back to my regular Dr to look into further. The fun doesn't end.

The spinal tap wasn't so bad. I'd heard lots of terrible things. But as I said I like my Neurologist. I met him at the clinic. My partner drove me. I even kept my shorts and t-shirt on, and just sat on the bed and leaned over a hospital tray table, and a nurse held my hands and the Dr was behind me and gave me a local and then did the spinal there was no real pain. I then laid flat on my back for about 30 minutes. He explained about how there is a risk of the hole not sealing and that when that happens it can cause excruciating headaches. That if I experienced any later that I was to lay back down on my back and if the head ache cleared that the problem was the seal and that the fix was to inject a "blood patch" back into the site that would form a patch or seal over the hole. He said it was a simple fix, and that this was a common side effect but that many Dr's didn't explain it and/or many patients didn't understand and just suffered through the headache for days or until the hole sealed itself. In my case, there was a little bit of blood when he pulled the needle out (not much) but he said that was actually good because that would create a natural blood patch. In any case he got his vial of clear spinal fluid on the first try with no real effort. He also drew more blood for more blood tests (without any problems hitting a vein). and I had zero side effects from the spinal.

It took about two weeks to get all the results. By Friday that week my Dr called me to report it was negative for Lyme. After the two weeks, he finally got the rest of the results. Apparently it was positive for some sort of bands (I forget the name) this was a confirmation of the MS. We set up an appointment for the following week to discuss next steps and medicine options. So now it is official - I have MS.

The next week my partner and I go to meet the Neurologist, and talk briefly about what this means - yes I have MS. This isn't a death sentence. I have RRMS, and the good news is that there are drugs today (called the crab drugs) that can prevent future outbreaks and slow down the progression of the disease. He also said that when he started in practice 30 years ago, there were no such drugs and when they believed someone to have MS there was nothing really they could do other than treat symptoms. He also said that without a doubt if I did not take one of the drugs that I would have other relapses it would be a matter of when and that the disease would progress and get worse. He said that wasn't a 50/50 it was a 90% or higher likelihood. He has no preference on which of the CRAB drugs - he said he has patients on each and many for several years. In some cases a patient will have reactions or one of them won't work and they might need to switch treatments but suggested it was my decision and gave me information to select 2 or more options and take home more information and read and make an informed decision. So I did, I read the materials (granted from the pharmaceutical company's point of view to sell their drug/product) and read what I could find online. My decision was to choose Copaxone vs any of the interferons. I don't like the idea of daily shots, however in my opinion the pro's outweighed the cons. No flu like symptoms for a day or more after each shot. No potential liver and other major organ damage from long term use. a slight possibility that it would actually help fight off the disease and not just prevent outbreaks. A couple more weeks and I received my drugs and I met with a nurse to learn how to do the injections.

Ok, so now I have MS and I'm now on MS drugs. Lot has happened in a relatively short amount of time. The daily shots are ok, the shot stings but not bad, worst is a burning sensation a couple minutes after the shot is done. An ice pack seems to help with that. The red spot/welts seem to clear after a day. I don't have a death sentence. People with MS live long lives. I am hopeful my daily life will not be effected in any significant way. So far it hasn't. I find I get tired and I now listen to my body and rest. Before I would have thought myself lazy. Now I think I just need to take care of myself. I'm still working on eating healthier; now not just to avoid too much carbs and to avoid raising my A1C and blood sugar levels but now also because it is important for the MS. I'm trying to get more exercise, because I should due to the MS, because I should because I have bone-on-bone osteoarthritis in both knees and in my opinion (and my orthopedic surgeon's) I'm too young to get a replacement yet.

Next up was the cyst on my Thyroid so met back with my regular Dr. who had just had me do another round of blood tests (it had been 3 months since last round - time flies when you are seeing all kinds of different Dr's and getting lots of different tests). My blood glucose level is creeping up, but the A1C is still good. Apparently this means my liver is producing too much glucose at night while I sleep so it is possible even eating healthy won't help. At this point we will keep watching. She also added a symvistatin (cholesterol med) to my drug list. Earlier this year she added lisonopril (blood pressure med) not to lower my blood pressure which is good but to protect small vessels and kidneys due to the potential of damage due to the high blood sugar. I also take effexor (which is sort of an anti-depressant) partly for mood swings and pre-menopausal issues, and she upped the effexor to help with my climbing stress level (due to all the life changing news I keep getting). My cholesterol numbers were not bad - my bad cholesterol was 135 (normal people need to be below 150), but due to the high blood sugar and all the new guidelines are <100. I also read something about some potential link between the cholesterol statin meds improving MS symptoms - don't know will have to read more. My good cholesterol is low (35 and should be >50), so my Dr suggests drinking more wine. ok I can try that. She also scheduled me for an ultrasound of my thyroid. She says cysts or goiters are common and if they are soft or not solid that it is no big deal. She even has one herself.

Went for the Ultrasound, and then back to the Dr to get the results. Not good. The cyst appears to be several solid nodules. Next step another appt with another specialist - this time a surgeon to look at doing a fine needle biopsy. Met with him. He said my thyroid number were low - .63 and normal is .5 - 6.0, and in his opinion the real range should be 1.0 - 4.0. Therefore mine is a low normal or in his range a low. The numbers are a reverse of thyroid activity. So low means over active. Apparently over-active is a good sign that it is not cancer. Because of that he felt it wasn't necessary to do the needle biopsy. Instead he scheduled a thyroid uptake scan test. So the following week I went to the imaging center and swallowed a radioactive pill/capsule. The next day I went back and they did an uptake scan. Then did a contrast injection and they took pictures. I met back with the Dr the following week. Bad news this time. The nodules were cold. Apparently if you are going to have nodules you want to keep them warm. Mine were cold. Cold is bad. Cold means it could be cancer. On the good side Thyroid cancer appears to be like the only kind that is curable. So the cold nodules mean he wanted to do the biopsy. First just two biopsies of the largest node on the left. If it comes back cancer, then we will need to schedule taking the Thyroid out. If it is benign then we need to do the biopsy of the largest nodule on the right side. They don't do a local for the fine needle biopsy. The theory is that the needle is so small you hardly feel it and the injection necessary to put in the anesthetic would hurt worse than the biopsy prick. Maybe. The needles are very small. The stick isn't bad, it is when they hook up that shop vac or whatever to the needle and try to suck your entire guts out through that little tiny straw of a needle that hurts. It made me cry. I don't cry often. He did the first and I cried, he asked if it was ok to go on, like at this point I see any choice. M was with me. She is always there when I need her. I'm not sure I could be going through all this without her. I go back next week with the results of the biopsy and to see if I need surgery or another biopsy. Then more waiting.

When I look back, I'm not sure where this all begins. I have had the tingling and numbness in my feet before this year. The first time was about 2004 or 2005. It didn't last as long and we attributed it to my sleeping on a featherbed causing a pinched nerve in my back, and when I switched back to my original bed it cleared up. I've had other MS symptoms - recently (since the numbness in the feet legs) I have had the infamous MS hug - which feels like a girdle around the waist that is cinched in. I have had issues in the past where i would struggle to find the words I'm trying to say, and some other things that might or might not be MS. So I don't know how far back all of this goes, or where the path is going to lead.

This blog is just my way of trying to find my way.