My husband drew this beautiful bird for me last night.
I was in bed, with a fever, and my whole family was in disbelief that I have shingles again.
When I say again, I mean this is the 4th time in 12 months that I have had shingles. It seems too absurd to be believed, and yet, it is the truth. My truth. I have a crappy immune system. There are good weeks, and not-so-good weeks.
This Thanksgiving, I am struggling with The Bitter Nurse Apple. The week of Thanksgiving is “supposed” to be a week of celebration for me. You see, after years of nasty medications for Crohn’s disease, painful injections, expensive diagnostic tests, weekly acupuncture, on and on… I began the SCD diet just before Thanksgiving of 2011.
The results were amazing: within 2 weeks, I was pain free. Completely symptom free within 2 months. I astounded my Gastroenterologist by successfully going off all my meds. I felt on top of the world. I’ve known all along that “remission is not a cure,” but remission was certainly good enough for me. I felt invincible: I had survived 3 years of hospital work through multiple candied holidays: Halloween x3, Thanksgiving and Christmas x 3, New Years and Valentine’s Day… you get the idea.
I had turned myself off of chocolate, and donuts, and bagels, and all the other sweet or starchy delights of the typical American workplace break room. And yet, this summer, I discovered it was not enough. Ultimately, that crappy immune system reared its ugly head. The shingles, the Crohn’s flare.
Crohn’s disease is not caused by stress, but stress certainly can be a trigger. I am at a point in my life where I cannot eliminate stress. Daily work with cancer patients, mothering a sweet and sometimes overly tender teenage boy, tending to the needs of a beloved octogenarian parent. It’s really nothing special, it is in many ways “just life,” but my body keeps reminding me that it is too much.
(Me and Bob King, on his “planning trip” to Portland recently. I look so freakin’ weary in this photo.)
After a week in a lovely private room at the hospital where I work this summer, the colonoscopy and other diagnostic tests revealed that some fairly serious damage was building up. So back on meds I went, feeling defeated, but determined to return to full time work, and to full time life.
The med itself seemed fairly innocuous. It’s a pill form of a low dose chemo. So no painful injections, no hideous welts on my flesh. I have my labs checked every 2 weeks to make sure my blood count and liver function are normal. I was settling into it over the months, when I gradually noticed I was losing my hair. I was hoping it was just a natural part of aging. But by the time I had completely clogged the shower drain multiple times, and then I noticed that my braids were getting skinny, I caught on. So here I am. Trying to stick with an extremely strict diet that I *know* has helped me, but nonetheless is not a cure. Trying to accept the fact that for now, I need to stay on this med. I am not fixed. I am tender, and vulnerable to the slightest of pitfalls, and it infuriates me.
I hate being Harrison’s Sick Mamma. I hate being the woman with a bottle of Imodium in her bag and extra underwear in her desk drawer. Just. In. Case. I want to be a role model: Nurse Apple, the SCD nurse… I believe so much in the power of food. I have seen and experienced so many positive changes in my own body, and in the bodies of all the children I know with IBD.
I also know how exhausting it is. It is never-ending, and isolating. It is time-consuming, and can feel futile. The victories are sweet, but can be tenuous.
So I’m giving myself the 3 year celebration. I’m calling it a Celebration of Improved Health. I wanted it to be a triumphant Celebration of Good Health. But it just is, and I will celebrate what I have. And more importantly, I will persevere.
Awww, Apple…you brought me to tears. I feel for you on so many levels. You are such a fighter though and I admire your tenacity and your strength. And I love that you are willing to celebrate whatever you have to celebrate, even if it’s not exactly what you were hoping for. You continue to inspire me (and I’m sure many others) with your positive attitude and I truly hope that you are feeling better soon. Thanks for sharing your heart with us. XO, Cindi
Wonderfully written. Even though I dont understand all that you go through, I am empathetic. You Shane and HH are loved,