A lot of people like to say "Common VARIABLE Immune Deficiency... because it is different with every patient!" It is and it isn't... and here's what I mean:
It's variable not because the presentation is so different (even though it does vary somewhat), but rather in large part because patient experience is so different. I have lung problems. Not all CVID patients do. I don't have GI problems, in large part, but a lot of CVID patients do. Some of us have sinuses that are worse than others, and no one really knows why some of us are so much sicker than others. That I will grant you.
BUT... and this is a BIG BUT...
The diagnostics are pretty straightforward. You do not have CVID if you respond to pneumovax. You do not have CVID if your IgG level is not 2 standard deviations BELOW NORMAL. This is a pretty low number, not just "out of range." Many many people are out of range and have no issues. It must be marked decrease in your serum levels. Ok? Ok. Now, with this reduction in IgG, you must also have reduced (or nonexistent) IgA or IgM. Not low IgG paired with normal IgA and high IgM. That's not CVID. Not. No. It isn't. Just stop. Also stop saying you have hypogammaglobulinemia when you have normal serum levels. Thanks.
I understand diagnostic criteria can change, but this has been standard for like 10 or 15 years. There are tons of folks who decide they have the symptoms (uh, what? You have fatigue? Definitely CVID ermmm no) without having reduced serum immunoglobulins and they respond to vaccine. I'm sorry that you feel crummy, but your feeling crummy is NOT THE SAME as mine. NOT THE SAME AT ALL. Yes, this makes me a little outlandishly ragey, but it has taken a long time to find people who truly understand, because so many people are like "I HAVE THIS" when they don't. You can insist all you like, but that doesn't change your blood chemistry.
I'm not saying you don't necessarily have a Primary Immune Deficiency, but what I'm saying is what you have is NOT what I have. So. In summary... JUST STOP.
Thursday, May 30, 2013
Wednesday, May 29, 2013
Working Hard
No, I didn't forget I had a blog. Life just happened. It's already been a busy time, but it's about to get even more busy. Argh.
I had a tryout for Jeopardy! last week in NYC. It was so much fun! I am exhausted from the trip, but really glad I did it. It's one more thing I never thought I would get to do that I've done now. :-)
Lately, since the second bout of the flu, I can't seem to feel better or get enough rest. Work, even though it is a slow time right now, has become more of a challenge than before. Now I feel like I just want to go home, put something in the microwave and just vegetate. I don't. I make an effort to cook dinner and meet up with people and do things. Sometimes, I wonder why. I just want it to be like it was when I first graduated from college. I was so much better off then. I guess I will be better about this when I get accustomed to new normal. Right now, though, it's crummy.
Sometimes, I wonder if trying so hard is even worth it. Why can't I just fold the cards I was dealt and get new ones? Wouldn't that be nice? I'm tired of pushing. I'm tired of doctors. I'm tired of trying to play normal. I know I shouldn't hold myself to some "ideal" or "normal" that I can't attain, but it is difficult not to. It's hard not to say "well, that person seems to be able to do that just fine, why can't I?" It's hard not to wonder if there is a way to make life easier. There really isn't. And it's not as if I can stand on some street corner and proclaim how awesome it is that I am just able to make it through another week.
Sometimes, I wish more people could see and appreciate how hard it is.
Then my mom sends me this "Honey I love you so much and am proud of the way you work so hard at having a good life. I know it isn't easy." Somehow, it helps.
I had a tryout for Jeopardy! last week in NYC. It was so much fun! I am exhausted from the trip, but really glad I did it. It's one more thing I never thought I would get to do that I've done now. :-)
Lately, since the second bout of the flu, I can't seem to feel better or get enough rest. Work, even though it is a slow time right now, has become more of a challenge than before. Now I feel like I just want to go home, put something in the microwave and just vegetate. I don't. I make an effort to cook dinner and meet up with people and do things. Sometimes, I wonder why. I just want it to be like it was when I first graduated from college. I was so much better off then. I guess I will be better about this when I get accustomed to new normal. Right now, though, it's crummy.
Sometimes, I wonder if trying so hard is even worth it. Why can't I just fold the cards I was dealt and get new ones? Wouldn't that be nice? I'm tired of pushing. I'm tired of doctors. I'm tired of trying to play normal. I know I shouldn't hold myself to some "ideal" or "normal" that I can't attain, but it is difficult not to. It's hard not to say "well, that person seems to be able to do that just fine, why can't I?" It's hard not to wonder if there is a way to make life easier. There really isn't. And it's not as if I can stand on some street corner and proclaim how awesome it is that I am just able to make it through another week.
Sometimes, I wish more people could see and appreciate how hard it is.
Then my mom sends me this "Honey I love you so much and am proud of the way you work so hard at having a good life. I know it isn't easy." Somehow, it helps.
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