I call this blog, ‘scenes from the immune system wars’ for a reason. I am constantly in a battle with myself. My body is in rebellion and I am on the front lines of a war. I am war weary and sometimes I just want to run out of fight.
Sadly, that is not an option. Neither is whining:)
But I do have some perspective these days. I have been at war long enough to know there will be campaign after campaign and that it will be never ending. I have to keep myself fit, both mentally and physically, for each and every onslaught.
What I mean by this is: I must acknowledge my enemy, my missing immunoglobulins, my faulty cells, and the havoc they wreak. I must be okay with the fact that I am working at a disadvantage here. I don’t know what all is happening to me on the inside. The doctors don’t know. My current diagnosis is “Atypical CVID.” Yeah. CVID is Common Variable Immune Disease/Disorder. It is variable by definition, not common, though. There are one in 50, 000 of us.
It is eating away at my autoimmunity somehow as well. No one really knows why.
So, that is the enemy.
I have weapons. I have lots and lots of drugs. One drug in particular: my infusion medication, Gammagard subcutaneous igg, is quite literally a life saver. It is a plasma product that I infuse into my belly once a week with four needles. It protects me against infection and seems to help with pain and fatigue.
Without it, I lose the war.
I am infusing now.
But, some days just suck. And those days used to frighten me. Yesterday was a suck day. I hurt all over… every joint, every ligament. I could not move my eyes in my head without pain. I was tired. Too tired to drink water. But, I made it. I got all the basics of my life done and I made it.
Today is a bit better.
I won.
I did not let it freak me out. I just realized, as I must realize, that some days will suck. I have to take the sucky days with the good days and keep fighting.
I have to take the needles in my belly even though they hurt and itch and keep going and keep being grateful as hell for them.
This is a weird war! But I am in for the long run. I may not win but I sure as hell won’t lose!