Good Days & Bad Days
I have good days and bad days. If I have to do something that requires me to leave the house it usually takes about 2 days to recover from it. Everything tires me out so completely that I'm getting 8 or so hours of sleep at night and then taking about 2 naps a day.
Mostly things are still up in the air. I met with a neurologist last week and I'm getting MRIs tomorrow of my brain and some other regions. Hopefully that'll rule out MS. Then next week I meet with an ophthalmologist to hopefully figure out what's going on with my vision. Later next week I meet with a rheumatologist to check my joints and muscles. After all of those tests, they, along with my primary care physician, will hopefully come up with a diagnosis.
But being the brilliant untrained medical specialist that I am, I've already decided that it's either a Lupus flare-up or rheumatoid arthritis. Both conditions seem very similar and the treatment is pretty much the same for both. If it's either I'll be going back on chemo for awhile but I survived it the first time so I'm sure I'll be okay this time too. It really only affects me on the day I receive the treatment and for a day or two after. No hair loss or anything like that. As long as I get enough rest and stay away from germy places I'll be fine.
I'm still not technically allowed to drive, but I have been a little bit because David can't take off work every time I need to go to an appointment. I'm no longer working and have dropped this semester, but will hopefully go back to school this summer or fall. I've been sleeping a lot because I tire very easily and 3 or 4 hours is the maximum amount of time I can go before needing a nap. Sometimes those naps last 1 hour, sometimes up to 4. It just depends.
Walking is difficult because I'm still losing my balance and occasionally falling, although not as much as before. My double vision seems to be worsening and the strain placed on my eyes by doing anything, especially driving, is very uncomfortable. My eyes are red and somewhat swollen so I spend a great deal of time with them closed, listening to books on cd. I love to read and hopefully won't be forced to only listen to books for very long.
Chloe, the dog we adopted about a month and a half ago, has been a wonderful companion for me. She gets me up and walking, which is the best thing for my muscles and joints although it hurts like you wouldn't believe, but I'd rather walk her than have her use the bathroom in the house. Plus, caring for her after her 5 years of emotional and physical abuse is therapeutic for me. I'm not exactly sure why but it probably has something to do with her needs are taking the focus away from my physical pain.
I'm also having some pretty decent memory problems. Most of my short-term memory is gone and the first part of this process is mostly a blur in my mind. I have a hard time thinking of details or words when I need to and that's difficult for me because I'm usually pretty organized of mind. I hope that goes away soon because I sometimes feel like I'm going crazy.
David has been wonderful. Very supportive and kind. He's been better than I could have ever expected. Even Jack (who happens to be going through his "emo" phase, oh God give me the strength I need to not kick the emo right out of him) is less of a rebellious tweener (a person who is 10, 11, or 12. Not yet a teenager, so people call them tweener) than normal. He still drives me crazy but at least he's more polite about it. (See how hip I am, what with being down with the current lingo? I'm kind of awesome like that.)
So that's where we are right now. We don't know exactly what's happening but I'm fairly certain it's one of the two conditions I mentioned above. It's a relief to know that I have a team of 4 doctors working with me to figure out what's happening. It's also irritating trying to accommodate all of their schedules. Doctors really think highly of themselves.
Other news:
My brother gets to come home from Iraq in April! He's already been there for about forever and doesn't come home for good until October-ish. We're all very excited. He got nominated for the second time for the bronze star, but we don't know why yet because he can only tell us in person. The first nomination was when he was in Afghanistan and I'll try to remember to tell you that story another time when I can see and concentrate better.
Mostly things are still up in the air. I met with a neurologist last week and I'm getting MRIs tomorrow of my brain and some other regions. Hopefully that'll rule out MS. Then next week I meet with an ophthalmologist to hopefully figure out what's going on with my vision. Later next week I meet with a rheumatologist to check my joints and muscles. After all of those tests, they, along with my primary care physician, will hopefully come up with a diagnosis.
But being the brilliant untrained medical specialist that I am, I've already decided that it's either a Lupus flare-up or rheumatoid arthritis. Both conditions seem very similar and the treatment is pretty much the same for both. If it's either I'll be going back on chemo for awhile but I survived it the first time so I'm sure I'll be okay this time too. It really only affects me on the day I receive the treatment and for a day or two after. No hair loss or anything like that. As long as I get enough rest and stay away from germy places I'll be fine.
I'm still not technically allowed to drive, but I have been a little bit because David can't take off work every time I need to go to an appointment. I'm no longer working and have dropped this semester, but will hopefully go back to school this summer or fall. I've been sleeping a lot because I tire very easily and 3 or 4 hours is the maximum amount of time I can go before needing a nap. Sometimes those naps last 1 hour, sometimes up to 4. It just depends.
Walking is difficult because I'm still losing my balance and occasionally falling, although not as much as before. My double vision seems to be worsening and the strain placed on my eyes by doing anything, especially driving, is very uncomfortable. My eyes are red and somewhat swollen so I spend a great deal of time with them closed, listening to books on cd. I love to read and hopefully won't be forced to only listen to books for very long.
Chloe, the dog we adopted about a month and a half ago, has been a wonderful companion for me. She gets me up and walking, which is the best thing for my muscles and joints although it hurts like you wouldn't believe, but I'd rather walk her than have her use the bathroom in the house. Plus, caring for her after her 5 years of emotional and physical abuse is therapeutic for me. I'm not exactly sure why but it probably has something to do with her needs are taking the focus away from my physical pain.
I'm also having some pretty decent memory problems. Most of my short-term memory is gone and the first part of this process is mostly a blur in my mind. I have a hard time thinking of details or words when I need to and that's difficult for me because I'm usually pretty organized of mind. I hope that goes away soon because I sometimes feel like I'm going crazy.
David has been wonderful. Very supportive and kind. He's been better than I could have ever expected. Even Jack (who happens to be going through his "emo" phase, oh God give me the strength I need to not kick the emo right out of him) is less of a rebellious tweener (a person who is 10, 11, or 12. Not yet a teenager, so people call them tweener) than normal. He still drives me crazy but at least he's more polite about it. (See how hip I am, what with being down with the current lingo? I'm kind of awesome like that.)
So that's where we are right now. We don't know exactly what's happening but I'm fairly certain it's one of the two conditions I mentioned above. It's a relief to know that I have a team of 4 doctors working with me to figure out what's happening. It's also irritating trying to accommodate all of their schedules. Doctors really think highly of themselves.
Other news:
My brother gets to come home from Iraq in April! He's already been there for about forever and doesn't come home for good until October-ish. We're all very excited. He got nominated for the second time for the bronze star, but we don't know why yet because he can only tell us in person. The first nomination was when he was in Afghanistan and I'll try to remember to tell you that story another time when I can see and concentrate better.
1 comment:
when i was in 5th grade, my mom had what they now think (they never fully figured it out) was rheumatoid arthritis- it just occurred to me how identical your symptoms are with hers. But, they thought she had lupus et al, and she was bedridden for over 2 years. Doctors just couldn't figure it out so they told her to rest. Finally, she realized she just had to get moving. And so she did, little by little. If you saw my mom today, you would never know that she spent over two years lying in a bed taking drugs.. I guess my point to all this is keep moving, which you are doing :) and we're praying for you.
-E
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