As I have described before in The Answer, the doctors and I have finally settled on a term for my condition. Since then, we have struggled with how best to treat it. My immunologist finally referred to my condition as “immune dysfunction”. I have neither a full blown autoimmune disease nor a full blown immune deficiency. I am trapped in a transition that makes it hard to diagnosis and even harder to treat.
You might think I would be happier now that we know what is going on. That’s what I thought, but the sad truth is, I’m not. I am actually more frustrated that I was. To sum up my resentment and anger: I’m not sick enough.
In this day and age, we feel invincible. That medicine had answers and if you caught things early enough they can treat and make your life so much better and longer. I am lucky enough to have a sweet dear friend whose disease did turn out this way, so it does happen. But my diagnosis is not as clear cut. The doctors think they know what’s going to happen. In fact, my immunologist told me to come back in two years! I mean, really? You can’t give me any relief sooner.
Luckily, my rheumatologist has been keeping a good eye on me. He gave me some medicines in December that wouldn’t fully kick in for six months, and I feel like I have reached that point. I generally feel better (much better than I did the last time I went to see him) but it is a band-aid, not a remedy.
So for now a lot of it is on me. Follow the rheumatologist and nephrologists orders, eat right, stay hydrated and get some exercise. That last part is especially hard because it hurts so much. I have been on a few walks, doing yoga, even rode a horse for about five minutes. Other than pray it’s the only thing I can do. And God is granting me the clarity, strength and resolve to push myself within safe limits. For this I am grateful.
What I am not grateful for: people’s confusion. Non-specialty doctors have no idea what to do with me. People think that not going back to the doctor for two years is a good thing. I wish I could just say I had lupus: people would understand. I wish I could just say CVID: doctors would understand. But I am a unique peacock: people watch me and marvel but they never get it.
So now I take up a new mantle: awareness. Like my kidney disease, I must educate, rally and advocate so people can understand my life and my needs. But while I complain, there are others who are in the same boat and who benefit too. I may not know them; they may not live around here, but I can make a difference for my cause and for them. I just have to spread the word-I just have to explain.
I am Zebra.*