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.
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2 comments:
I am so glad I jumped a lot b4 my MS. Used to never need a Dr., medical stuff all obscure to me. With an 11 year old? Very brave. I'm sure you were well-motivated. I have no safety net, really never did, but I DID have my health and after I found my partner, she was unwell and I knew insurance would need to be in the picture. No more leaping for me. We do what we must.
Diane - very true. We do what we must. and somehow it all works out.
If I remember right, you did move across the country from, I forget was it Indiana? or some place mid-west, to Seattle.
I know so many people that never left town. They still live in the town they were born and raised in. My parents moved a lot. They were both from southern Illinois, but moved out to Oregon for a while where my brother was born. Then to KY, then to IL (where I was born), then back to KY, and eventually moved in 1971 to the house my mom is still in.
I grew up pretty much in KY, living in the town mom still lives in from 1970 until I graduated high school, and started college. I then got married, and moved to TN, then to Germany (West Germany it was then) where my daughter was born. Then lived a brief period in GA, then back to KY (back to my folk's actually, they took me & my 8 month old back in until I could get back on my feet again). My point is that I have restarted my life several times, changed careers, changed paths, moved, etc. I've lived through some hard times, some easy times. Some of it was harder than others, but like you say, you just make do. It all works out, one way or another.
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