I wish I had a dollar for every time a well meaning person has told me about a supplement that will “increase my immunity.”
I wish I had a dollar for every time a well meaning person has told me that if I would just eat right and lose weight my body would heal.
I wish I had a dollar for every time a well meaning person has told me that I would just let it flow, you know, no stress, I would get better.
I wish I had a dollar for every little offer of help that makes the other person feel better, more secure, about their own health, their own world.
No, I take that all back. I wish I had at least $150k per incident. That would be truly awesome.
I know my friends, family and mere strangers mean well. I try to be nice; really, I do.
But, DAMN IT, PEOPLE, DON’T YOU THINK I HAVE TRIED THAT STUFF ?
I have been at this chronic illness thing for a while now. I have read, and read and asked and asked and been diagnosed with some pretty clear cut diseases.
They just aren’t common diseases and they aren’t curable and they aren’t clear cut or kill-me-now kinds of things.
I have CVID: Common Variable Immuno Deficiency. It really isn’t all that common. It is a primary immune disease that about 1 in 25 million people have. It means I do not manufacture all of the immunoglobulins that healthy people do, in order to protect me against infection and other complications no one yet understands. I take a weekly subcutaneous infusion of a plasma product called igg that is created from the plasma of many healthy donors (please donate plasma!). It helps me build up my immune system and stay healthy for a week.
I have Mixed Connective Tissue Disease: About 30-40% of people with CVID will also be diagnosed with an autoimmune disorder. This happened to me about six years after my initial diagnosis. Except, no one told me it was so common and I had to go all the way to Mayo to get a diagnosis. MCTD is a little bit of a bunch of rheumatological diseases. I have a little lupus and a little Sjogren’s and whatever… my joints hurt and I am fatigued. For this, I take an immune suppressant drug called Plaquenil.
Trust me, I know that is weird. One drug amps my immune system up and one takes it back down.
It turns out the human immune system is so complicated that medical science is only beginning to understand it. The parts of me that need the immuno boost are different from the parts that need the immuno-suppressant.
On top of these main concerns I have a lot of other ‘system failures’ or bugs in my programming. Autoimmune disease, of the kind I have, seems to trigger flares of pain in different parts of the body. Sometimes they are identifiable and treatable on their own but most of the time the are just bad luck.
Right now I have a type of chronic pancreatitis that won’t give in. I do not show up on any tests and have spent over a year seeking treatment from three different doctors. Finally, I have decided to go with a surgical option that might fix it for me. The down side is that it might make me worse.
So, I don’t want to sound bitchy or whiny or any of those things. I just want to be understood a bit by you normal people out there.
I did not do this to myself through some strange dietary accident. I wish I was a less high stress person but I do the best I can and seek help when I need it.
The bottom line is; I’m screwed.
Or, Not.
It is all in how you see things. Is the glass of Metamucil half full or half empty?
I have been learning a lot about living one day at a time. If I try to go any faster, it seems I fall flat on my ass. I concentrate, as much as I can, on that half full glass of something other than Metamucil.
So, don’t feel bad for me. Just treat me like you always would. If I cannot do something or I feel bad, I will tell you. Otherwise I am grateful for the company and friendship of those who are not freaked out by all my ‘issues.’