I'm not a big blogging person. I'm big into the whole "my life is private, go away" scenario. I do believe in the therapeutic power of writing, which explains the numerous half-filled journals scattered around my life. However, as my dad pointed out to me, the point of blogging about this particular aspect of life is not as much therapeutic for myself as it is helpful for someone else. Either someone who wants to understand what I am going through, or what someone else they know with CVID is going through. Or, more personally important, someone like me who was diagnosed with this out of the blue and is feeling lost and confused and full of despair and questions because they're not sure what is going to happen, all they know is that their life has completely changed. So with that in mind, here goes nothing....
It's amazing how the big moments in life attain a pristine, crystal clear quality in one's mind, like they're trapped in a bubble and at anyone moment you can step inside and relive that moment. Its not true of course. Psychologists have long since shown that our memory is not perfect, and if anything we are guilty of invention, of adding details that did not originally exist, either for self-preservation or self-improvement. Still, it feels that way. I can distinctly remember the seconds before I was struck by a car while crossing the road when I was sixteen. Or when I got the call that offered me an exclusive spot in the Ph.D. program I had thought was now beyond my reach.
So it is that I can remember the call from my immunologist to inform me that he believed I had CVID. It was my first day of spring break, my last semester of undergraduate college. I remember that I was excited to finally get some answers. I had been sick on and off - more on than off - for over two years, and had been suffering more recently from a number of strange eye infections and painful lesions. I thought I had a Behcet's syndrome, a different rare immune system disease. Turns out I was wrong. I remember the feeling of fear when I learned that my immunoglobulin levels were over 400 counts lower than they should be. I remember the feeling of despair when I learned that there was no cure.
After the initial round of testing, which included vaccinations to see if I could produce antibodies in response (I can't) and blood tests to see if I have any antibodies to vaccinations I got when I was younger (I don't), I haven't really gotten any solid information. Most of what I know I learned from various websites, some of which are specifically for individuals with immunodeficiency, like this one. I'm frustrated that I haven't been able to sit down and talk with my immunologist about what it all means, though it has been two months since his first phone call. On the plus side, I have started the typical treatment for CVID, immunoglobulin replacement therapy, in which I receive immunoglobulins that have been distilled and purified from the blood of donors and infused intravenously to boost my crippled immune system. I am told that this treatment will help me feel better, more energetic, and will help me from getting sick so easily. Luckily I do not react strongly to the IVIG treatment, and the worse side effect I have experienced so far is fatigue.
I just wish I had some more answers.
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