Thursday, December 23, 2010

Wonderfully Independent - another word for stubborn

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.

Wednesday, December 22, 2010

silent heroes; unsung heroes

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

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.

Tuesday, December 21, 2010

HO HO HO and Bah Humbug

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. 

Thursday, November 11, 2010

Edie & Thea

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. 

Sunday, October 31, 2010

what is real?

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.

Wednesday, September 22, 2010

thyriods - what's it good for?

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.

Saturday, September 18, 2010


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.

Monday, August 30, 2010

Rest & Relaxation

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.

Friday, August 27, 2010

the future, predictions, predictability

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. 

Wednesday, August 25, 2010

One of those people...

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!

Tuesday, August 3, 2010

generosity of people

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.

Wednesday, July 28, 2010

The ride and recovery, and knees and things

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.

Friday, July 23, 2010

ms bike ride - heat of the summer

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.

Sunday, July 18, 2010

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

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.

Thursday, June 10, 2010

knee surgery round 2

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.

Sunday, May 16, 2010

Motivation, the importance of cat naps

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. 

Thursday, May 6, 2010

update, musing on heredity

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.

Saturday, May 1, 2010

Knee surgery, recovery

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.

Tuesday, April 27, 2010

Saturday Bike Ride

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.

Wednesday, April 21, 2010

Weekend Getaway, bikes, and things

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.

Monday, March 22, 2010

MS brain fog...

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....

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

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

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:

Thank you!!

Lisa Emrich

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