Most sufferers of any one autoimmune syndrome are three times more likely than others to develop additional autoimmune diseases down the road. ~ Donna Jackson Nakazawa, The Autoimmune Epidemic
1/5/2015, email to Josh
I’m having a really hard time with the colitis still. When I feel healthy on a given day, I feel optimistic and upbeat. But today I felt super-tired again, and I found out today that I’ve developed conjunctivitis in my eyes, which is a form of inflammation that means I can never wear normal contacts again–I can only wear daily throw-out lenses, which cost $600 a year. This kind of thing keeps happening–little inflammatory things cropping up far from my digestive tract, interfering with quality of life. My whole body is just inflamed and I don’t know why!
And Marin just had a baby, and Michelle is pregnant, and it’s really hard to be 36 and wanting a baby and having all your friends be having babies even though they’re younger than you. So, that’s how I’m REALLY doing, since you asked. Often good, but stressed about my illness underneath…but I go back and forth.
It felt so great to talk to Susan today. She listened wholly when I said I wanted a baby, hugged me, said how hard that must be. It felt so great to press against her big, pregnant belly and share my grief, admit that that’s what I want too, just have her hold me and share that with me. My heart felt so heavy all day. Last night I broke down at dinner with Ron, over the coffee table, about how bad I want a little baby of my own. He does too. He held me and let me cry. He never makes me feel inadequate. He said no matter what, he’d want to be with me. I’m so lucky.
I decided to be brave at the doctor’s this morning and check Facebook, first time in weeks or months. Always wary of all the babies. But I realized that I don’t want to isolate myself, that that would be such a shame, and I was glad I went on, and I made a little rebellious game of only “liking” posts that had nothing to do with parenthood. Then it felt so great to talk to Susan. Then a heavy heart all day, the claustrophobia during my shopping: I’m sick; I now have conjunctivitis along with everything else; God has abandoned me; I’m trapped. I composed the words to blog posts about it in my head, but feel too drained to write them now. I’ll just write here.
It’s been a great month, relative to almost all of last year–the first time I’ve felt almost completely healthy since before Thanksgiving of 2013. My energy was usually there, bursting out of me in the morning and throughout the day; I was productive and my spirits were high. Have been high.
I just get these lows sometimes, too. Today I didn’t even know why I was melancholy all day; I just was. My energy waned midday after groping my way through my first real volunteer work with Tryon Creek Watershed Council, trying to make a trifold board using various computer programs. By midday I was tired of it and unfocused, and then as I raced off to my Pilates class I discovered that the Volvo was dead, and I hurriedly insisted to Ron that I had to take the other car instead, which meant he didn’t have a great way to go to the gym shortly after me as planned. He didn’t seem to mind at all, insisting he could just bike, but as I drove to the gym despair threatened: I hadn’t been generous, once again. All through class I fought it back, and for the rest of the afternoon all I wanted was to be in a small African village with Ron and my health, on the dirt roads, in the sun, interacting with the people. Or just to be with him, here, and make him feel loved.
When he came home we were sweet all evening, and I felt so vulnerable. I don’t even know how much of it was being told, at my afternoon appointment, that I may never be able to wear contacts again: that this latest manifestation of the fire in my body is inflammation in my eyes, giant papillary conjunctivitis, and it’s getting worse, not better, since I saw the optometrist two weeks ago, and the only option other than thick glasses for life may be surgery, which for me would cost $4000-8000 because my corneas are so thin and I can’t do Lasik. It’s just hard not to be scared, sometimes, underneath all my optimism and hope: Why am I still so inflamed? What does my body need that it’s not getting? Is there just no going back?
I’m starting, for the first time, to be able to fathom never going to Africa again, and/or never having kids. Ron said he’s been mentally trying to prepare for the latter. It was a really good talk yesterday about that. I cried a little. We’d be such good, sweet, loving parents. Like we are with the kitties. But I imagine it now, how life could turn in a huge, unexpected direction. Me sharing these quiet lifelong pangs with Ron. Dreaming of another life, of traveling in Africa or walking with children or both. But here instead, living simply, trying to want only what we already have.
What if who I am isn’t about the things I do, but the way I deal with the hand I am dealt?