I used to post a health update weekly. I haven’t done it in a long time.
When I was in the drug trial, it was part of the story. I had to keep a journal for the NIH, and blogging made it easier. Now, I seldom post about how I’m doing.
I don’t want to whine.
When you live with a chronic illness, you live in a kind of Catch-22. If you tell people (when they ask) how you actually feel or are doing day-to-day, they get sick of hearing it. They grow tired of hearing about a problem they can’t help with or fix. They start to think of you as a hypochondriac. On the other hand, if you always reply, “I’m fine” no one really understands you or your life. If you have a lot of health issues, you get very good at looking perfectly fine, even when you’re not. To have a life, there are just some days where you just have to do your best to push through.
I don’t know how to resolve this issue. No matter what I do, it seems I can’t win.
The other day, however, while listening to a news report about plans to review cases on social security disability, it occurred to me that perhaps I should keep documenting this stuff, just in case I need it someday.
I can’t imagine I’d be a good candidate for review.
I am legally blind and have a progressive disease. It isn’t going to get better. If anyone looks at the medical records from the time, you’d hope they’d conclude reviewing my case would be a waste of tax dollars. Yet, this is the government we’re talking about after all.
Okay, so with that said, here’s the medical update.
Overall, on most days, I feel well. Still, I have my issues. It seems like every third or fourth day I feel extremely fatigued, and I’m not sure why. Perhaps it’s a number of reasons.
My blood work shows I’m constantly low on Vitamin D and B-12. My doctor has put me on mega doses of Vitamin D, yet still my number from the last lab work barely moved. It’s something that I plan to bring up at my next appointment.
My B-12 this time was exactly on the lower edge of the okay range. I’ve been taking B-12 supplements. A lack of B-12 is common among people with bowel disease, especially over time. We’re keeping an eye on it and if it drops enough, we’ll have to do shots.
My thyroid is again, on the very lower line of the normal range. So, no adjustment of medication. Still, I have been dieting pretty well lately (only a few slip ups like last night and today – diet frustration) and while I’ve lost some weight, it’s coming off SO SLOWLY! Is a pound a week really too much to ask?
I haven’t had PFTs in a while, but they were stable at the last check. I have, however, developed a pretty regular cough. It’s not a cough like a cold that is almost constant. It comes and goes so you wouldn’t notice it unless you were with me often. It’s a dry cough some of the time, and other times I cough up lots of phlegm. At least it’s clear. I think (diagnosing myself) it’s a mixture of asthma (maybe HPS related) and post nasal drip.
My sinuses are constantly a problem as are my allergies. I take Allegra, Singular and Benadryl every single day. If I miss one of these, my cough gets worse. I get a runny nose, and if I don’t take a Benadryl, at least half the time I break out in hives within two days.
My GI has been a bit of a concern for the past few weeks. I’m keeping an eye on it as sometimes these things just come and go on their own. If it continues as it has, however, I plan to go see the gastroenterologist.
I’ve had the runs at least four days out of the week for the past month. For two days a week ago it was so bad that I had to go several times an hour for more than 24 hours. I actually set an alarm so that I would remember to keep drinking fluids and so I wouldn’t fall asleep and discover an exploded pouch!
My joints on the days that I seem to have tummy trouble are more painful. My stomach also felt very crampy. On the three worst days, it was so sore that the elastic on my underwear even was painful.
The crazy thing is just when I think things are looking bad and I should get into the doctor, things improve. Yesterday and today I’ve had no problems (at least in this department). Go figure!
Finally, my other big chronic problem is the sores that develop around my stoma. Last night one of them bled and caused a leak. I would estimate at least once a week this is a problem. It makes things very difficult because you never know when it’s going to happen. It makes me anxious.
For example, this weekend I want to go to the RenFest. This means carrying supplies around with me all day. And should something bad happen, it means changing my pouch in a Johnny-on-the-Spot. Unless there’s a big nasty sore forming, however, I’m going to RenFest. I can’t just keep myself at home all the time. Still, I can’t imagine a less sterile environment should disaster strike!
I’ve gotten very good at treating these sores over the years. I just haven’t figured out how to prevent them.
So far the medical world hasn’t been much help. They look at the sores (which may or may not be flared up when I happen to be at the doc.) and they don’t seem to appreciate how disruptive a problem they can be. Yet, after years and fourth and fifth opinions, I give up. I’ve decided I just have to live with them.
On the upside, except when you’re cleaning these sores, most of the time they aren’t particularly painful. They are just hugely annoying!
When I was in the drug trial, it was part of the story. I had to keep a journal for the NIH, and blogging made it easier. Now, I seldom post about how I’m doing.
I don’t want to whine.
When you live with a chronic illness, you live in a kind of Catch-22. If you tell people (when they ask) how you actually feel or are doing day-to-day, they get sick of hearing it. They grow tired of hearing about a problem they can’t help with or fix. They start to think of you as a hypochondriac. On the other hand, if you always reply, “I’m fine” no one really understands you or your life. If you have a lot of health issues, you get very good at looking perfectly fine, even when you’re not. To have a life, there are just some days where you just have to do your best to push through.
I don’t know how to resolve this issue. No matter what I do, it seems I can’t win.
The other day, however, while listening to a news report about plans to review cases on social security disability, it occurred to me that perhaps I should keep documenting this stuff, just in case I need it someday.
I can’t imagine I’d be a good candidate for review.
I am legally blind and have a progressive disease. It isn’t going to get better. If anyone looks at the medical records from the time, you’d hope they’d conclude reviewing my case would be a waste of tax dollars. Yet, this is the government we’re talking about after all.
Okay, so with that said, here’s the medical update.
Overall, on most days, I feel well. Still, I have my issues. It seems like every third or fourth day I feel extremely fatigued, and I’m not sure why. Perhaps it’s a number of reasons.
My blood work shows I’m constantly low on Vitamin D and B-12. My doctor has put me on mega doses of Vitamin D, yet still my number from the last lab work barely moved. It’s something that I plan to bring up at my next appointment.
My B-12 this time was exactly on the lower edge of the okay range. I’ve been taking B-12 supplements. A lack of B-12 is common among people with bowel disease, especially over time. We’re keeping an eye on it and if it drops enough, we’ll have to do shots.
My thyroid is again, on the very lower line of the normal range. So, no adjustment of medication. Still, I have been dieting pretty well lately (only a few slip ups like last night and today – diet frustration) and while I’ve lost some weight, it’s coming off SO SLOWLY! Is a pound a week really too much to ask?
I haven’t had PFTs in a while, but they were stable at the last check. I have, however, developed a pretty regular cough. It’s not a cough like a cold that is almost constant. It comes and goes so you wouldn’t notice it unless you were with me often. It’s a dry cough some of the time, and other times I cough up lots of phlegm. At least it’s clear. I think (diagnosing myself) it’s a mixture of asthma (maybe HPS related) and post nasal drip.
My sinuses are constantly a problem as are my allergies. I take Allegra, Singular and Benadryl every single day. If I miss one of these, my cough gets worse. I get a runny nose, and if I don’t take a Benadryl, at least half the time I break out in hives within two days.
My GI has been a bit of a concern for the past few weeks. I’m keeping an eye on it as sometimes these things just come and go on their own. If it continues as it has, however, I plan to go see the gastroenterologist.
I’ve had the runs at least four days out of the week for the past month. For two days a week ago it was so bad that I had to go several times an hour for more than 24 hours. I actually set an alarm so that I would remember to keep drinking fluids and so I wouldn’t fall asleep and discover an exploded pouch!
My joints on the days that I seem to have tummy trouble are more painful. My stomach also felt very crampy. On the three worst days, it was so sore that the elastic on my underwear even was painful.
The crazy thing is just when I think things are looking bad and I should get into the doctor, things improve. Yesterday and today I’ve had no problems (at least in this department). Go figure!
Finally, my other big chronic problem is the sores that develop around my stoma. Last night one of them bled and caused a leak. I would estimate at least once a week this is a problem. It makes things very difficult because you never know when it’s going to happen. It makes me anxious.
For example, this weekend I want to go to the RenFest. This means carrying supplies around with me all day. And should something bad happen, it means changing my pouch in a Johnny-on-the-Spot. Unless there’s a big nasty sore forming, however, I’m going to RenFest. I can’t just keep myself at home all the time. Still, I can’t imagine a less sterile environment should disaster strike!
I’ve gotten very good at treating these sores over the years. I just haven’t figured out how to prevent them.
So far the medical world hasn’t been much help. They look at the sores (which may or may not be flared up when I happen to be at the doc.) and they don’t seem to appreciate how disruptive a problem they can be. Yet, after years and fourth and fifth opinions, I give up. I’ve decided I just have to live with them.
On the upside, except when you’re cleaning these sores, most of the time they aren’t particularly painful. They are just hugely annoying!
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