My daughter and I flew to western KY to spend the holiday's with my mom on Xmas eve, and my brother and family drove in from mid-state (5 1/2 hr drive) on Saturday and left again on Sunday. Another whirlwind family get-together. My mom loved it. And was left completely exhausted. She seemed to be doing pretty good this visit. But that can be hard to tell. She is still complaining that it hurts to swallow, talk, basically use her throat. But she'll be ok. We flew back on Thursday the 30th, and then got stuck in Chicago (apparently high winds - hmm windy city?) due to delays. Airlines no longer give you free rooms if you are stranded. They offer "discounts", I'd hate to see what the normal prices of some of these places are. On the other hand, if I think about it, why should the airline have to pay for a hotel for me, when the flight was delayed by weather? Basically they chose to limit the number of flights that could take off or land at any given time due to the high winds. Which in turn caused some major delays and caused us (along with lots of other people) to miss their connections. So is that the airline's fault? I think it makes a little more sense to blame the airline when they just randomly cancel a flight, or they bump you without reason, etc. Last year we had an issue in Cincinnati trying to catch a connection, and went to the gate to be told the plane just left. I said, but I have 10 after, the flight isn't scheduled to leave until 20 after, and had the attendant tell me quite proudly that her monitor said 15 after. When I tried to explain how that still mean the plane left early, she shrugged and said it was already gone, and did I want help getting a replacement flight?
One of my main complaints with flying these days is that checked bags cost at least $25 a bag, unless of course you pay extra to fly first class - then you can get free checked bags (in some cases 3). Ok, if there is a problem with passengers taking too much and they need to limit bags, charging would be a way to do that. But oh, then you hear that they are having to add sand bags as ballast to even out the load since people aren't taking as many bags. Go figure. Then there are all the people that go through security lugging way more bags than the 1 bag plus one personal item (purse, pillow, etc). I guess there are a lot of people that don't know how to count. Also, these same people that can't count are the ones that have the "over-sized" carry-ons and have to gate-check them. Which is free. Which is why these people are doing this. Basically it is like checking a bag, only it is free, and you get your bag back at plane side when you reach your destination. Other advantage I guess is that if you get stranded like we did in Chicago, you got your bag with you. Ours somehow didn't miss our connection (even tho we landed when the other plane was supposedly taking off) even though we did. So we got to spend the night without our luggage. I carry a laptop bag with me that has my essential stuff in it. So I was ok.
We stayed in the Hilton at the Chicago airport - in the airport actually. Cost a little more, but to me it was worth not have to try to go out find and catch a shuttle for a 20 min drive to some hotel and be at their mercy to be able to get a shuttle the next morning and not miss our return flight. It already took us almost 15-20 minutes to walk from the airport itself to the hotel lobby, much less go on outside where the shuttle buses were. The hotel was nice. Not that I ever plan to go back to it. The main down point of the stay in Chicago was walking into an elevator just as a homeless man was exiting to discover he had just peed in the corner. Ewww. and why there? never mind I don't want to know. J wondered how he knew he could be finished in time before the doors opened... I don't know? practice?
M also had her own fun travelling over the holiday. She flew to SC to see W. Was supposed to fly out on Friday and return Monday, making it a 4 day weekend trip. She got stuck because of a connecting flight through Newark, and had her Monday flight rescheduled for Thursday, and then when it looked like it might be cancelled again, ended up having to get another flight home. She is holding her breath waiting for a refund on the original return flight. Which they did promise, so maybe. I think the worst part of her getting stuck was that she was staying with W and his girlfriend D and she got sick of hearing sales pitches for XANGO. The miracle fruit, cure for MS and anything that ails you, that I wrote about before. You don't sell the product, you just find 5 friends that will join and market it, and they find 5 friends, etc. The other issue was that D's cooking apparently left something to be desired, she said the meals were things that really sounded good, but every time she put any of it in her mouth she was disappointed. The other problem was that it was unseasonably cold in SC. And apparently W & D didn't feel the need to turn up the heat. M was talking about having to put socks on her hands to read so her hands didn't freeze. M doesn't normally complain of the cold.
Western KY is really not that far south of where I live in Central PA. But a lot of people from this area seem to believe I am travelling south when I mention going to see my mom. Now, granted if you listen to the accents of the locals, you will definitely hear a drawl. And like a lot of the south, they don't get in any hurry. But geographically, it is really more west than south. Temperature-wise it normally is within a few degrees of here. In fact, we had a white xmas (about 3-4 inches) which was more than here. In any case, I wish it was further south and that the temperatures reflected it. I am pretty much over winter time. Today was a "warm spell" - regular heat wave with temps climbing into the 40's. Feels a lot better than 20's and below. And this single digit stuff with the wind chill - it really has to go. I truly think my MS doesn't like cold. Maybe it is just me that doesn't like cold, but I like to think it is one thing that we agree on. Something we can both be on the same side regarding. I just really don't like the bitter cold. Especially damp & cold. I don't care for extreme heat either, but the cold just seems to do something to me. And plus arthur doesn't care for it either. So the 3 of us - arthur, MS & me all would greatly prefer if we were done with winter now please. My arthritis in my left knee has really been acting up. I saw the dr yesterday and talked about seeing another specialist to discuss a knee replacement. Hiking across the airport, riding my bike, stepping out in the cold. None of those things are much fun these days. So I think it is time. It isn't going to get any better. And the things that were helping (like the walking, exercising and riding bike) don't seem to be doing it now. So I need to take the next step and see what I need to know to plan.
Showing posts with label MS. Show all posts
Showing posts with label MS. Show all posts
Tuesday, January 4, 2011
Wednesday, December 22, 2010
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.
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.
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"
I think Edie tells it better than I possibly could in her video clip. Please watch it.
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.
Saturday, September 18, 2010
stuff
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.
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.
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.
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!
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!
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.
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.
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.
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.
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.
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.
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.
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:
Read more: http://brassandivory.blogspot.com/#ixzz0iulgiEjg
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:
http://www.surveymonkey.com/s/
Thank you!!
Lisa Emrich
Short synopsis: The Internet offers unprecedented amounts of information. It’s a boon and a minefield both. How are people with MS managing it? We’ll ask some MS Webheads and some experts on health information about facts, rumor, opinion, and challenges to received wisdom. We’ll also explore how people stay calm when faced with too much information.
The 10-question survey is meant specifically for bloggers but is not limited to those in the US. If I have your email, you received this same request. I do not have emails for every MS bloggers (not even close), so I ask that you pass this request on....perhaps posting it on your blog.
The NMSS is hoping to get as many responses within the next week as possible.
Here is the address for the survey:
http://www.surveymonkey.com/s/
Thank you!!
Lisa Emrich
Read more: http://brassandivory.blogspot.com/#ixzz0iulgiEjg
Saturday, January 9, 2010
MS bike ride, getting involved
One of the incentives of trying to get in better shape, is that M is determined that we participate in the MS Bike Ride this year. She wants us to form a team, the two of us, her dad, her sister and her partner would be members (least at the moment). The ride near us is June 24 & 25 from Paradise and back. For more info see: bike MS: To Paradise and Back 2010. Sounds ambititious. When M first looked at it, she wanted to plan to do 150 miles - 75 each day and go for broke. Considering we just got back on a bike this past summer that seems a little over the top to me.
After checking into it finding out more details, we discovered that in ordre to register you have to pledge to raise at least $150 if you ride 1 day, or $250 if you ride both days. Both days they have 25, 50 and 75 mile loops that you can ride. If you form a team, then each team member still has to meet that minimum individually. I'm not sure we will have a team. But I do want to do the ride. Right now we are talking about just doing 1 day, and we can wait to decide how far. M is now thinking maybe going for 50. I'm thinking I'm shooting for 25 to start with. The money raised goes to local programs and services for the local chapter(s) of the NMSS (National Multiple Sclerosis Society) and to research. I think last year the Paradise ride was co-sponsored by Central PA and the Greater Delaware chapters. I didn't know anything about it last year. But then I didn't really know anything about MS last year.
Once we have registered and I can figure out how to link that to here, I will post where someone can go in and pledge to sponsor me or my team.
Right now I'm working on trying to get in better shape so as to survive 25 miles on a bike at the end of June. I only went a couple times out around locally before winter and we averaged about 10-12 miles so I think 25 is do-able. I'm hoping that if I have the surgery (or for that matter if I don't) on my right knee that it won't effect the plan for us to ride.
After checking into it finding out more details, we discovered that in ordre to register you have to pledge to raise at least $150 if you ride 1 day, or $250 if you ride both days. Both days they have 25, 50 and 75 mile loops that you can ride. If you form a team, then each team member still has to meet that minimum individually. I'm not sure we will have a team. But I do want to do the ride. Right now we are talking about just doing 1 day, and we can wait to decide how far. M is now thinking maybe going for 50. I'm thinking I'm shooting for 25 to start with. The money raised goes to local programs and services for the local chapter(s) of the NMSS (National Multiple Sclerosis Society) and to research. I think last year the Paradise ride was co-sponsored by Central PA and the Greater Delaware chapters. I didn't know anything about it last year. But then I didn't really know anything about MS last year.
Once we have registered and I can figure out how to link that to here, I will post where someone can go in and pledge to sponsor me or my team.
Right now I'm working on trying to get in better shape so as to survive 25 miles on a bike at the end of June. I only went a couple times out around locally before winter and we averaged about 10-12 miles so I think 25 is do-able. I'm hoping that if I have the surgery (or for that matter if I don't) on my right knee that it won't effect the plan for us to ride.
Monday, November 16, 2009
Am I alone?
I know that it hasn't been that long since I was diagnosed or that long since I've started on MS meds. I find myself thinking and wondering if various symptoms I have are MS related or just unrelated stuff that I've had for some time. I've read a lot online, and realize a lot of what you find online has to be taken with a grain of salt. But I do wonder about what's next or what to expect. From what I read, I'm lucky. I'm not seriously impacted, I have some annoying symptoms but I can live with that. From the way my Dr talks that may be all i have for a long long time. He seems to think that today's newly diagnosed patients aren't as apt to suffer all the severe symptoms and disabilities as those that have had the disease for a long time, and/or haven't taken any of the meds to prevent things from getting worse. yet, I don't find anyone like me online. maybe that is because the ones that are writing blogs and sharing their stories have more to say because they are more affected. maybe the people like me are busy living their lives and working and don't have the time or energy to share their stories.
I understand that no two people have all the exact same symptoms - this is a very varied disease that impacts each one of us differently. So for now I just count myself lucky. I don't seem to be bothered by extreme heat - at least not completely. We have a hot tub - that we just put in within the past 3 years. I love it. It is great especially for my arthritic knees. But now I see that so many MS patients can't tolerate hot tubs etc. that it can flare up symptoms etc.
The only time the heat bothers me is that when it is a very humid day i feel very lethargic. Also there are times when i "over-heat" and just suddenly get drenched with sweat. I always figured that was a hormonal thing. And maybe it is.
I've talked to a couple of "peers" - people that also have MS that take the same meds I do, and have found that very helpful, but they have had MS for at least 10 years or more. I have officially had it only a month or two. So they aren't like me... which comes back to the "am I alone?"
I understand that no two people have all the exact same symptoms - this is a very varied disease that impacts each one of us differently. So for now I just count myself lucky. I don't seem to be bothered by extreme heat - at least not completely. We have a hot tub - that we just put in within the past 3 years. I love it. It is great especially for my arthritic knees. But now I see that so many MS patients can't tolerate hot tubs etc. that it can flare up symptoms etc.
The only time the heat bothers me is that when it is a very humid day i feel very lethargic. Also there are times when i "over-heat" and just suddenly get drenched with sweat. I always figured that was a hormonal thing. And maybe it is.
I've talked to a couple of "peers" - people that also have MS that take the same meds I do, and have found that very helpful, but they have had MS for at least 10 years or more. I have officially had it only a month or two. So they aren't like me... which comes back to the "am I alone?"
Friday, November 13, 2009
The first post - the diagnosis and where it all began (in the middle)
A blank blog is like a blank canvas, or a blank page, where do you start? Could start at the beginning, but then you have to figure out where the beginning was and all I'm really sure of is that I'm not really sure of anything at this point.
The purpose of this blog is to have a place to post thoughts and feelings, a place to start in the middle (now) and try to go back to figure out what came before and what is supposed to come next. I'm not writing for anyone else, this is just for me. If it ends up being something that other find and/or get some benefit then it will have served two purposes.
Who am I? I'm a 46 yr old woman, single but in a long term relationship. I was recently diagnosed with MS. Multiple Sclerosis. That's something I really didn't know that much about or think much about until 2 months ago. Apparently that is unusual, a lot of people with MS spend years with "maybe MS" and no definite diagnosis. So I'm glad it didn't drag on, but that means it was also kind of sudden, a lot to absorb.
But it has been a whirlwind of medical discoveries this year (2009). First in July, met with my family doctor and had routine blood work and was told that my Blood Sugar levels are a little high and need to be watched. My A1C is ok, but the fasting was close to being something to worry about. As a result I learned a lot about how diet effects your blood sugar and attempted (ok so I like food, especially stuff that isn't that good for you) to eat more healthy. I learned about how unlike what I thought about diabetes as a kid (my 2nd cousin by marriage had type 1 and had to take insulin) wasn't true. I remember back then everyone thought you just had to avoid sugar, but could eat most anything else - including all these starchy potatoes and fruits and carbs all of which convert to glucose and no one knew. Now the key is watching what and how much - portion control is everything. sugar is ok in moderation and you have to know how much and balance it all out. Yes, I now know a lot more about how to eat healthy - I just need to actually practice it.
Not long after I got used to the idea that I needed to watch what and how much I ate and eat healthier and watch my glucose levels so as to avoid ending up with type 2 diabetes, I ended up catching a cold/flu that was going around. I was sick for a couple days into the weekend and missed a day of work then noticed a new symptom over the weekend - bottoms of my feet were numb. Both of them. Which seemed a little odd, but I was still sick so didn't worry a lot about it. By Monday it wasn't any better and I decided to call my Dr. One of my concerns was that about 6 years ago my father had gotten Gilliam Barre from a flu shot. He never fully recovered. So in my mind I was drawing parallel's - he had a flu shot and got this disease that caused almost complete paralysis, required being airlifted to a hospital across the state and spent days in ICU and then weeks in a rehab hospital to learn to walk again. (he did re-learn to walk, and went back home, and then had relapses due to kidney infections due to not regaining complete muscle control of all systems, and was in and out of hospital and each hospital stay he lost a little more ground, until he ended up in long term care and never came back home. So, I had the flu, and my feet were numb... it needed to be checked out. I really didn't think it was the same thing, but couldn't take any chances.
After the typical round of calls to the Dr office and speaking to nurses and then later finally speaking to the Dr and being told to come in this afternoon (a week and half after the flu and first symptoms), the Dr checked my reflexes talked to me about my symptoms at that point it was my entire feet up to my ankles and no longer just the bottoms. It wasn't really that they had no feeling, they were "fuzzy" or tingling. Like electric or static shocks only constant. Never stopped. For that matter it is still there. They checked my reflexes and said mine were brisk, asked if they always were. Had no clue - what's that mean? still had the cough and head congestion too - but since my "mucus" was clear and I had no fever, I was deemed to be ok. They also said since my blood sugar level wasn't that elevated nor had it been for any length of time that they didn't think it was neuropathy which apparently is common in diabetics. So next stop - go see a Neurologist and have a MRI on the way of my lower spine with and without contrast.
That was the second time I've had a MRI of my lower spine but the first time with contrast. First time was about 3 years ago when I had some sciatic nerve pain and they didn't really find anything. So had the MRI and the contrast injection without any issues met with the Neurologist the following week. He does more reflex tests - agrees that my reflexes are brisk, and finds I have the Babinski sign - this means that the big toe flies up when you run your thumb hard along the base of your foot. This reaction is not normal, the normal response is apparently to curl your toes under, mine definitely fly up. At this point the numbness or tingling is on up past mid-calf. I have knee highs on (not literally but imaginary), they feel tight, and tingly. If you touch my skin especially lightly, I feel it like a shock wave that scatters all across the surface of my skin very irritating. He also did pin prick tests - I could feel the stick every where. He did tests with a tuning fork - I could feel the vibrations most places but when he touched the fork to the joint of my big toe, the vibrations mingled with the tingling resonating through my feet and I couldn't even feel it. He also watched me walk and tested my balance (poor - especially if my eyes were closed). I'd noticed that myself, if in the shower and closing my eyes, found that i had to have one hand or elbow on the side wall to orient myself so didn't feel like falling. I liked my Neurologist, which is important. I need to like my dr's and trust them. I think mine knows his stuff, and I like how he takes time to explain things and answers questions. We looked at the lower spine MRI's and he said there was nothing to note on them. The Dr had explained that my problem wasn't peripheral nerve issue that it was in the central nervous system (CNS), which meant either the spine or the brain, some things not so likely in the brain because it was effecting both feet equally and most brain things are one side or the other. Lyme was mentioned, and that it was something that was attacking my myelin, or the nerve shealth in the CNS. He also had mentioned some form of myelitis. He explained about how the myelin acts as the insulation on the nerves much like insulation on an electric cable keeps the wires from shorting out. Ok, so know I know what is going on, my nerves are shorting out. What causes it? He also talked about how normally they prescribe steroids (high dosage steroids) to help alleviate the symptoms like mine - but that since my blood sugar was already near danger zone, he didn't want to do the steroids since that will sharply raise blood sugar levels.
Next he wanted me to have blood work to eliminate Lyme disease, and scheduled a MRI of my upper spine/neck and brain with and without contrast. Had the blood test and heard back a few days later that no - I was negative for Lyme. Went for the MRI but was only able to get it without contrast. They weren't able to "find" a vein and/or blew out the ones they found and were unable to inject the contrast. They were only able to turn me into a human pin-cushion and bruise both elbows and the back of my one hand. Then gave up and decided if the Dr or the Radiologist thought it was necessary they would have to reschedule. Fun Fun.
Went back to Neurologist to see the results of the brain & upper spine/neck MRI's (without contrast). Repeated all the reflex and other tests - at this point the numbness/tingling is now mid thigh, sometimes feels like wearing support thigh highs - there is a definite "tightness" and fuzzy feeling, and the tingling and light touches to my skin still causes my skin to crawl and radiates like electricity, but my balance is better, and actually some of the feeling and the "normal" is returning to my feet. They still feel odd but different and there are places that feel normal. According to the brain MRI i have lesions in my brain. He can't tell if they are active (could have with the contrast but not without), and says they are also called Dawson's fingers. These are also a sign of MS and/or Lyme. I think this is the first time any mention of MS was brought up - althought that is definitely fits the description of a de-myelating disease. I'd already tested negative on the blood test for Lyme. Next step is now to have the spinal tap. This would definitely eliminate any possibility of Lyme (apparently because of taking Minocycline in the past Lyme could have been killed off in my blood by not in my spinal fluid). So that's scheduled the following week. Also, the Dr pointed out that they found a possible cyst of some sort on my left thyroid gland in the MRI of my neck. He said that would be referred back to my regular Dr to look into further. The fun doesn't end.
The spinal tap wasn't so bad. I'd heard lots of terrible things. But as I said I like my Neurologist. I met him at the clinic. My partner drove me. I even kept my shorts and t-shirt on, and just sat on the bed and leaned over a hospital tray table, and a nurse held my hands and the Dr was behind me and gave me a local and then did the spinal there was no real pain. I then laid flat on my back for about 30 minutes. He explained about how there is a risk of the hole not sealing and that when that happens it can cause excruciating headaches. That if I experienced any later that I was to lay back down on my back and if the head ache cleared that the problem was the seal and that the fix was to inject a "blood patch" back into the site that would form a patch or seal over the hole. He said it was a simple fix, and that this was a common side effect but that many Dr's didn't explain it and/or many patients didn't understand and just suffered through the headache for days or until the hole sealed itself. In my case, there was a little bit of blood when he pulled the needle out (not much) but he said that was actually good because that would create a natural blood patch. In any case he got his vial of clear spinal fluid on the first try with no real effort. He also drew more blood for more blood tests (without any problems hitting a vein). and I had zero side effects from the spinal.
It took about two weeks to get all the results. By Friday that week my Dr called me to report it was negative for Lyme. After the two weeks, he finally got the rest of the results. Apparently it was positive for some sort of bands (I forget the name) this was a confirmation of the MS. We set up an appointment for the following week to discuss next steps and medicine options. So now it is official - I have MS.
The next week my partner and I go to meet the Neurologist, and talk briefly about what this means - yes I have MS. This isn't a death sentence. I have RRMS, and the good news is that there are drugs today (called the crab drugs) that can prevent future outbreaks and slow down the progression of the disease. He also said that when he started in practice 30 years ago, there were no such drugs and when they believed someone to have MS there was nothing really they could do other than treat symptoms. He also said that without a doubt if I did not take one of the drugs that I would have other relapses it would be a matter of when and that the disease would progress and get worse. He said that wasn't a 50/50 it was a 90% or higher likelihood. He has no preference on which of the CRAB drugs - he said he has patients on each and many for several years. In some cases a patient will have reactions or one of them won't work and they might need to switch treatments but suggested it was my decision and gave me information to select 2 or more options and take home more information and read and make an informed decision. So I did, I read the materials (granted from the pharmaceutical company's point of view to sell their drug/product) and read what I could find online. My decision was to choose Copaxone vs any of the interferons. I don't like the idea of daily shots, however in my opinion the pro's outweighed the cons. No flu like symptoms for a day or more after each shot. No potential liver and other major organ damage from long term use. a slight possibility that it would actually help fight off the disease and not just prevent outbreaks. A couple more weeks and I received my drugs and I met with a nurse to learn how to do the injections.
Ok, so now I have MS and I'm now on MS drugs. Lot has happened in a relatively short amount of time. The daily shots are ok, the shot stings but not bad, worst is a burning sensation a couple minutes after the shot is done. An ice pack seems to help with that. The red spot/welts seem to clear after a day. I don't have a death sentence. People with MS live long lives. I am hopeful my daily life will not be effected in any significant way. So far it hasn't. I find I get tired and I now listen to my body and rest. Before I would have thought myself lazy. Now I think I just need to take care of myself. I'm still working on eating healthier; now not just to avoid too much carbs and to avoid raising my A1C and blood sugar levels but now also because it is important for the MS. I'm trying to get more exercise, because I should due to the MS, because I should because I have bone-on-bone osteoarthritis in both knees and in my opinion (and my orthopedic surgeon's) I'm too young to get a replacement yet.
Next up was the cyst on my Thyroid so met back with my regular Dr. who had just had me do another round of blood tests (it had been 3 months since last round - time flies when you are seeing all kinds of different Dr's and getting lots of different tests). My blood glucose level is creeping up, but the A1C is still good. Apparently this means my liver is producing too much glucose at night while I sleep so it is possible even eating healthy won't help. At this point we will keep watching. She also added a symvistatin (cholesterol med) to my drug list. Earlier this year she added lisonopril (blood pressure med) not to lower my blood pressure which is good but to protect small vessels and kidneys due to the potential of damage due to the high blood sugar. I also take effexor (which is sort of an anti-depressant) partly for mood swings and pre-menopausal issues, and she upped the effexor to help with my climbing stress level (due to all the life changing news I keep getting). My cholesterol numbers were not bad - my bad cholesterol was 135 (normal people need to be below 150), but due to the high blood sugar and all the new guidelines are <100. I also read something about some potential link between the cholesterol statin meds improving MS symptoms - don't know will have to read more. My good cholesterol is low (35 and should be >50), so my Dr suggests drinking more wine. ok I can try that. She also scheduled me for an ultrasound of my thyroid. She says cysts or goiters are common and if they are soft or not solid that it is no big deal. She even has one herself.
Went for the Ultrasound, and then back to the Dr to get the results. Not good. The cyst appears to be several solid nodules. Next step another appt with another specialist - this time a surgeon to look at doing a fine needle biopsy. Met with him. He said my thyroid number were low - .63 and normal is .5 - 6.0, and in his opinion the real range should be 1.0 - 4.0. Therefore mine is a low normal or in his range a low. The numbers are a reverse of thyroid activity. So low means over active. Apparently over-active is a good sign that it is not cancer. Because of that he felt it wasn't necessary to do the needle biopsy. Instead he scheduled a thyroid uptake scan test. So the following week I went to the imaging center and swallowed a radioactive pill/capsule. The next day I went back and they did an uptake scan. Then did a contrast injection and they took pictures. I met back with the Dr the following week. Bad news this time. The nodules were cold. Apparently if you are going to have nodules you want to keep them warm. Mine were cold. Cold is bad. Cold means it could be cancer. On the good side Thyroid cancer appears to be like the only kind that is curable. So the cold nodules mean he wanted to do the biopsy. First just two biopsies of the largest node on the left. If it comes back cancer, then we will need to schedule taking the Thyroid out. If it is benign then we need to do the biopsy of the largest nodule on the right side. They don't do a local for the fine needle biopsy. The theory is that the needle is so small you hardly feel it and the injection necessary to put in the anesthetic would hurt worse than the biopsy prick. Maybe. The needles are very small. The stick isn't bad, it is when they hook up that shop vac or whatever to the needle and try to suck your entire guts out through that little tiny straw of a needle that hurts. It made me cry. I don't cry often. He did the first and I cried, he asked if it was ok to go on, like at this point I see any choice. M was with me. She is always there when I need her. I'm not sure I could be going through all this without her. I go back next week with the results of the biopsy and to see if I need surgery or another biopsy. Then more waiting.
When I look back, I'm not sure where this all begins. I have had the tingling and numbness in my feet before this year. The first time was about 2004 or 2005. It didn't last as long and we attributed it to my sleeping on a featherbed causing a pinched nerve in my back, and when I switched back to my original bed it cleared up. I've had other MS symptoms - recently (since the numbness in the feet legs) I have had the infamous MS hug - which feels like a girdle around the waist that is cinched in. I have had issues in the past where i would struggle to find the words I'm trying to say, and some other things that might or might not be MS. So I don't know how far back all of this goes, or where the path is going to lead.
This blog is just my way of trying to find my way.
The purpose of this blog is to have a place to post thoughts and feelings, a place to start in the middle (now) and try to go back to figure out what came before and what is supposed to come next. I'm not writing for anyone else, this is just for me. If it ends up being something that other find and/or get some benefit then it will have served two purposes.
Who am I? I'm a 46 yr old woman, single but in a long term relationship. I was recently diagnosed with MS. Multiple Sclerosis. That's something I really didn't know that much about or think much about until 2 months ago. Apparently that is unusual, a lot of people with MS spend years with "maybe MS" and no definite diagnosis. So I'm glad it didn't drag on, but that means it was also kind of sudden, a lot to absorb.
But it has been a whirlwind of medical discoveries this year (2009). First in July, met with my family doctor and had routine blood work and was told that my Blood Sugar levels are a little high and need to be watched. My A1C is ok, but the fasting was close to being something to worry about. As a result I learned a lot about how diet effects your blood sugar and attempted (ok so I like food, especially stuff that isn't that good for you) to eat more healthy. I learned about how unlike what I thought about diabetes as a kid (my 2nd cousin by marriage had type 1 and had to take insulin) wasn't true. I remember back then everyone thought you just had to avoid sugar, but could eat most anything else - including all these starchy potatoes and fruits and carbs all of which convert to glucose and no one knew. Now the key is watching what and how much - portion control is everything. sugar is ok in moderation and you have to know how much and balance it all out. Yes, I now know a lot more about how to eat healthy - I just need to actually practice it.
Not long after I got used to the idea that I needed to watch what and how much I ate and eat healthier and watch my glucose levels so as to avoid ending up with type 2 diabetes, I ended up catching a cold/flu that was going around. I was sick for a couple days into the weekend and missed a day of work then noticed a new symptom over the weekend - bottoms of my feet were numb. Both of them. Which seemed a little odd, but I was still sick so didn't worry a lot about it. By Monday it wasn't any better and I decided to call my Dr. One of my concerns was that about 6 years ago my father had gotten Gilliam Barre from a flu shot. He never fully recovered. So in my mind I was drawing parallel's - he had a flu shot and got this disease that caused almost complete paralysis, required being airlifted to a hospital across the state and spent days in ICU and then weeks in a rehab hospital to learn to walk again. (he did re-learn to walk, and went back home, and then had relapses due to kidney infections due to not regaining complete muscle control of all systems, and was in and out of hospital and each hospital stay he lost a little more ground, until he ended up in long term care and never came back home. So, I had the flu, and my feet were numb... it needed to be checked out. I really didn't think it was the same thing, but couldn't take any chances.
After the typical round of calls to the Dr office and speaking to nurses and then later finally speaking to the Dr and being told to come in this afternoon (a week and half after the flu and first symptoms), the Dr checked my reflexes talked to me about my symptoms at that point it was my entire feet up to my ankles and no longer just the bottoms. It wasn't really that they had no feeling, they were "fuzzy" or tingling. Like electric or static shocks only constant. Never stopped. For that matter it is still there. They checked my reflexes and said mine were brisk, asked if they always were. Had no clue - what's that mean? still had the cough and head congestion too - but since my "mucus" was clear and I had no fever, I was deemed to be ok. They also said since my blood sugar level wasn't that elevated nor had it been for any length of time that they didn't think it was neuropathy which apparently is common in diabetics. So next stop - go see a Neurologist and have a MRI on the way of my lower spine with and without contrast.
That was the second time I've had a MRI of my lower spine but the first time with contrast. First time was about 3 years ago when I had some sciatic nerve pain and they didn't really find anything. So had the MRI and the contrast injection without any issues met with the Neurologist the following week. He does more reflex tests - agrees that my reflexes are brisk, and finds I have the Babinski sign - this means that the big toe flies up when you run your thumb hard along the base of your foot. This reaction is not normal, the normal response is apparently to curl your toes under, mine definitely fly up. At this point the numbness or tingling is on up past mid-calf. I have knee highs on (not literally but imaginary), they feel tight, and tingly. If you touch my skin especially lightly, I feel it like a shock wave that scatters all across the surface of my skin very irritating. He also did pin prick tests - I could feel the stick every where. He did tests with a tuning fork - I could feel the vibrations most places but when he touched the fork to the joint of my big toe, the vibrations mingled with the tingling resonating through my feet and I couldn't even feel it. He also watched me walk and tested my balance (poor - especially if my eyes were closed). I'd noticed that myself, if in the shower and closing my eyes, found that i had to have one hand or elbow on the side wall to orient myself so didn't feel like falling. I liked my Neurologist, which is important. I need to like my dr's and trust them. I think mine knows his stuff, and I like how he takes time to explain things and answers questions. We looked at the lower spine MRI's and he said there was nothing to note on them. The Dr had explained that my problem wasn't peripheral nerve issue that it was in the central nervous system (CNS), which meant either the spine or the brain, some things not so likely in the brain because it was effecting both feet equally and most brain things are one side or the other. Lyme was mentioned, and that it was something that was attacking my myelin, or the nerve shealth in the CNS. He also had mentioned some form of myelitis. He explained about how the myelin acts as the insulation on the nerves much like insulation on an electric cable keeps the wires from shorting out. Ok, so know I know what is going on, my nerves are shorting out. What causes it? He also talked about how normally they prescribe steroids (high dosage steroids) to help alleviate the symptoms like mine - but that since my blood sugar was already near danger zone, he didn't want to do the steroids since that will sharply raise blood sugar levels.
Next he wanted me to have blood work to eliminate Lyme disease, and scheduled a MRI of my upper spine/neck and brain with and without contrast. Had the blood test and heard back a few days later that no - I was negative for Lyme. Went for the MRI but was only able to get it without contrast. They weren't able to "find" a vein and/or blew out the ones they found and were unable to inject the contrast. They were only able to turn me into a human pin-cushion and bruise both elbows and the back of my one hand. Then gave up and decided if the Dr or the Radiologist thought it was necessary they would have to reschedule. Fun Fun.
Went back to Neurologist to see the results of the brain & upper spine/neck MRI's (without contrast). Repeated all the reflex and other tests - at this point the numbness/tingling is now mid thigh, sometimes feels like wearing support thigh highs - there is a definite "tightness" and fuzzy feeling, and the tingling and light touches to my skin still causes my skin to crawl and radiates like electricity, but my balance is better, and actually some of the feeling and the "normal" is returning to my feet. They still feel odd but different and there are places that feel normal. According to the brain MRI i have lesions in my brain. He can't tell if they are active (could have with the contrast but not without), and says they are also called Dawson's fingers. These are also a sign of MS and/or Lyme. I think this is the first time any mention of MS was brought up - althought that is definitely fits the description of a de-myelating disease. I'd already tested negative on the blood test for Lyme. Next step is now to have the spinal tap. This would definitely eliminate any possibility of Lyme (apparently because of taking Minocycline in the past Lyme could have been killed off in my blood by not in my spinal fluid). So that's scheduled the following week. Also, the Dr pointed out that they found a possible cyst of some sort on my left thyroid gland in the MRI of my neck. He said that would be referred back to my regular Dr to look into further. The fun doesn't end.
The spinal tap wasn't so bad. I'd heard lots of terrible things. But as I said I like my Neurologist. I met him at the clinic. My partner drove me. I even kept my shorts and t-shirt on, and just sat on the bed and leaned over a hospital tray table, and a nurse held my hands and the Dr was behind me and gave me a local and then did the spinal there was no real pain. I then laid flat on my back for about 30 minutes. He explained about how there is a risk of the hole not sealing and that when that happens it can cause excruciating headaches. That if I experienced any later that I was to lay back down on my back and if the head ache cleared that the problem was the seal and that the fix was to inject a "blood patch" back into the site that would form a patch or seal over the hole. He said it was a simple fix, and that this was a common side effect but that many Dr's didn't explain it and/or many patients didn't understand and just suffered through the headache for days or until the hole sealed itself. In my case, there was a little bit of blood when he pulled the needle out (not much) but he said that was actually good because that would create a natural blood patch. In any case he got his vial of clear spinal fluid on the first try with no real effort. He also drew more blood for more blood tests (without any problems hitting a vein). and I had zero side effects from the spinal.
It took about two weeks to get all the results. By Friday that week my Dr called me to report it was negative for Lyme. After the two weeks, he finally got the rest of the results. Apparently it was positive for some sort of bands (I forget the name) this was a confirmation of the MS. We set up an appointment for the following week to discuss next steps and medicine options. So now it is official - I have MS.
The next week my partner and I go to meet the Neurologist, and talk briefly about what this means - yes I have MS. This isn't a death sentence. I have RRMS, and the good news is that there are drugs today (called the crab drugs) that can prevent future outbreaks and slow down the progression of the disease. He also said that when he started in practice 30 years ago, there were no such drugs and when they believed someone to have MS there was nothing really they could do other than treat symptoms. He also said that without a doubt if I did not take one of the drugs that I would have other relapses it would be a matter of when and that the disease would progress and get worse. He said that wasn't a 50/50 it was a 90% or higher likelihood. He has no preference on which of the CRAB drugs - he said he has patients on each and many for several years. In some cases a patient will have reactions or one of them won't work and they might need to switch treatments but suggested it was my decision and gave me information to select 2 or more options and take home more information and read and make an informed decision. So I did, I read the materials (granted from the pharmaceutical company's point of view to sell their drug/product) and read what I could find online. My decision was to choose Copaxone vs any of the interferons. I don't like the idea of daily shots, however in my opinion the pro's outweighed the cons. No flu like symptoms for a day or more after each shot. No potential liver and other major organ damage from long term use. a slight possibility that it would actually help fight off the disease and not just prevent outbreaks. A couple more weeks and I received my drugs and I met with a nurse to learn how to do the injections.
Ok, so now I have MS and I'm now on MS drugs. Lot has happened in a relatively short amount of time. The daily shots are ok, the shot stings but not bad, worst is a burning sensation a couple minutes after the shot is done. An ice pack seems to help with that. The red spot/welts seem to clear after a day. I don't have a death sentence. People with MS live long lives. I am hopeful my daily life will not be effected in any significant way. So far it hasn't. I find I get tired and I now listen to my body and rest. Before I would have thought myself lazy. Now I think I just need to take care of myself. I'm still working on eating healthier; now not just to avoid too much carbs and to avoid raising my A1C and blood sugar levels but now also because it is important for the MS. I'm trying to get more exercise, because I should due to the MS, because I should because I have bone-on-bone osteoarthritis in both knees and in my opinion (and my orthopedic surgeon's) I'm too young to get a replacement yet.
Next up was the cyst on my Thyroid so met back with my regular Dr. who had just had me do another round of blood tests (it had been 3 months since last round - time flies when you are seeing all kinds of different Dr's and getting lots of different tests). My blood glucose level is creeping up, but the A1C is still good. Apparently this means my liver is producing too much glucose at night while I sleep so it is possible even eating healthy won't help. At this point we will keep watching. She also added a symvistatin (cholesterol med) to my drug list. Earlier this year she added lisonopril (blood pressure med) not to lower my blood pressure which is good but to protect small vessels and kidneys due to the potential of damage due to the high blood sugar. I also take effexor (which is sort of an anti-depressant) partly for mood swings and pre-menopausal issues, and she upped the effexor to help with my climbing stress level (due to all the life changing news I keep getting). My cholesterol numbers were not bad - my bad cholesterol was 135 (normal people need to be below 150), but due to the high blood sugar and all the new guidelines are <100. I also read something about some potential link between the cholesterol statin meds improving MS symptoms - don't know will have to read more. My good cholesterol is low (35 and should be >50), so my Dr suggests drinking more wine. ok I can try that. She also scheduled me for an ultrasound of my thyroid. She says cysts or goiters are common and if they are soft or not solid that it is no big deal. She even has one herself.
Went for the Ultrasound, and then back to the Dr to get the results. Not good. The cyst appears to be several solid nodules. Next step another appt with another specialist - this time a surgeon to look at doing a fine needle biopsy. Met with him. He said my thyroid number were low - .63 and normal is .5 - 6.0, and in his opinion the real range should be 1.0 - 4.0. Therefore mine is a low normal or in his range a low. The numbers are a reverse of thyroid activity. So low means over active. Apparently over-active is a good sign that it is not cancer. Because of that he felt it wasn't necessary to do the needle biopsy. Instead he scheduled a thyroid uptake scan test. So the following week I went to the imaging center and swallowed a radioactive pill/capsule. The next day I went back and they did an uptake scan. Then did a contrast injection and they took pictures. I met back with the Dr the following week. Bad news this time. The nodules were cold. Apparently if you are going to have nodules you want to keep them warm. Mine were cold. Cold is bad. Cold means it could be cancer. On the good side Thyroid cancer appears to be like the only kind that is curable. So the cold nodules mean he wanted to do the biopsy. First just two biopsies of the largest node on the left. If it comes back cancer, then we will need to schedule taking the Thyroid out. If it is benign then we need to do the biopsy of the largest nodule on the right side. They don't do a local for the fine needle biopsy. The theory is that the needle is so small you hardly feel it and the injection necessary to put in the anesthetic would hurt worse than the biopsy prick. Maybe. The needles are very small. The stick isn't bad, it is when they hook up that shop vac or whatever to the needle and try to suck your entire guts out through that little tiny straw of a needle that hurts. It made me cry. I don't cry often. He did the first and I cried, he asked if it was ok to go on, like at this point I see any choice. M was with me. She is always there when I need her. I'm not sure I could be going through all this without her. I go back next week with the results of the biopsy and to see if I need surgery or another biopsy. Then more waiting.
When I look back, I'm not sure where this all begins. I have had the tingling and numbness in my feet before this year. The first time was about 2004 or 2005. It didn't last as long and we attributed it to my sleeping on a featherbed causing a pinched nerve in my back, and when I switched back to my original bed it cleared up. I've had other MS symptoms - recently (since the numbness in the feet legs) I have had the infamous MS hug - which feels like a girdle around the waist that is cinched in. I have had issues in the past where i would struggle to find the words I'm trying to say, and some other things that might or might not be MS. So I don't know how far back all of this goes, or where the path is going to lead.
This blog is just my way of trying to find my way.
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