Tag Archives: autoimmune disease

135Journals Blog Health Corner: What It Feels Like When You Feel Like Crap

11 Jun
Welcome to my Microbiome (altered art journal pages by Alexandra Hanson-Harding )

Welcome to my Microbiome (altered art journal pages by Alexandra Hanson-Harding )

Did you ever wonder what it was like to feel like crap? Probably not. If you’re like most people, i.e., everyone, you’ve probably felt like crap. And if you aren’t feeling like crap, you probably don’t want to remember it. But have I not seen eight million motivational infographics on the importance of living in the moment? Well, friends, if one if going to live in the moment, one is not always going to be doing meditation by the ocean and feeling full of vibrant life energy. Sometimes the moment is being in a sucky meeting where some halfwit is publicly berating you for a typo on a meaningless report. Sometimes the moment is yes, that is YOUR screaming brat on the overstuffed airplane. Sometimes the moment is when you’re desperately searching around on the laptop for an amusing viral video to watch with one hand while you’re holding your syringe filled with methotrexate in the other, getting the nerve up to jam it into your leg. Sometimes the moment is that moment when you actually do jam it into your leg and it actually hurts and you say “OW!” and think DAMN it, and feel mad at yourself because why are you being such a goddamned wimp. It shouldn’t hurt that much. It only hurts that much if I hurt in too many other ways. Right now, some of the vertebrae in my neck are sore and swollen, and my feet hurt, and my tongue is sore, strangely enough, and I’m very tired, and when that many things confuse my senses, I have less resilience against small irritations like a tiny needle.

Today I am feeling like crap because I had two main things I wanted to do: go to a new acupuncturist and go to visit a friend who is very charming and smart and who has terminal cancer. That, and of course, having an inflammatory autoimmune disease. But I digress. This morning I woke up at 4:00 a.m. feeling very sick to my stomach. After 8:30, I fell asleep for an hour in my kitchen reading nook, but had were strange, disturbed dreams. I also had a sore throat and shivers, as I often do these days. And I was still sick to my stomach. I have been lying in my nook looking at the windows that I have decorated with hundreds of strands of woven yarn (compulsive art project), looking at the green trees beyond, and up at the hemlock tree that I can see through the skylight. I see a brass bell I bought at a castle in Germany. I see a vase full of small glass beads that I want to string, and a glass of water that looks too tiring to drink. I see the phone. I want to call my friend but it  feels too tiring to talk to anyone. I would only whine anyway. It took me hours to tell the acupuncturist I couldn’t come. He was nice. He said, “Try drinking coke. If you still feel sick later, you could try chewing Juicy Fruit gum and swallowing it. It’s very binding.” I laughed. “That’s the best Alternative Medical advice I ever heard,” I said. “I’m definitely trying that.” Said it sounded better than a kale smoothie. “You DEFINITELY do not need a kale smoothie right now.”

I feel guilty for not seeing the acupuncturist and my friend. But I don’t want to spread my germs. And I can’t imagine summoning the energy to get into a car and driving it. I’m sweating and shivering. My stomach is a knot of pain. My eyes are half-closed and gravity feels as if it’s crushing me onto the cushion. My neck is throbbing. All around me, grown-ups are doing useful things. I’m just living in the moment. The crappy, but real, moment.

Writing Prompt: Do you ever have times when you feel like crap? Go ahead. WHINE.

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Strangely, Having an Official Disease Diagnosis Does not Make Me Want to Take Up Sky-Diving

19 May
My doctor says that many of his patients find that learning to give themselves injections is "empowering." My verdict? Actually--yes!

My doctor says that many of his patients find that learning to give themselves injections is “empowering.” My verdict? Actually–yes!

I have not written in this blog for more than two months. It is no coincidence that I stopped writing after I visited a highly recommended rheumatologist who spent 90 careful minutes with me, squeezing my joints, asking me questions that were similar to what my last rheumatologist had asked, and asking me what I wanted to ask. But he also did something that my other, very smart but very cautious rheumatologist had not dared to do in several years of treatment: give me an actual, solid diagnosis. He said to me, looking at my three-ring binder filled with five years of MRIs, cat scans, biopsies, doctor visits, etc., “You’ve had a LOT of testing. But not a lot of treating. I think, given your family history, given your symptoms, given everything, that you have an inflammatory autoimmune disease in the spondyloarthropathy family.”

“The spondyla—“

He helped me spell it out for my journal and explained it for me. Because I have a certain blood factor called HLA B27, I am susceptible to a disease called ankylosing spondylitis (which basically turns your whole spine into one stiff unit) and several similar diseases—spondyloarthropathies. They include axial spondyloarthropathy (which has different manifestations, but can include having more arthritis all over your body), psoriatic arthritis (a combination of psoriasis and arthritis—nice!), Sjogren’s syndrome, which makes your eyes dry and other nasty things, and even Crohn’s disease—a severe intestinal problem which is called an enteric arthritis. I never knew that there could be an intestinal arthritis, but there you go. I know a lot of things now that I didn’t know, thank you Google, Twitter, and Pinterest.

Anyway, what I have is similar to rheumatoid arthritis, except that it lacks the exact blood factor that rheumatoid arthritis factor has. To have that, one would be sero-positive. This is sero-negative arthritis. But it’s not the same as osteoarthritis—which I also have in some parts of my body, such as my hips. That’s just bones wearing out and rubbing against each other. Or synovial fluid running out, or whatever. I can’t think about osteoarthritis right now.

To have a diagnosis after five years of searching for a reason for the pain and fatigue that have changed my life, and my husband’s life, so much, is a relief in many ways. For one thing, I have medicine to help treat the disease now, not just the pain and the sadness that it causes. To their credit, my doctors have believed that something real has been happening to me from the beginning, even if they couldn’t name it. But now I have two kinds of drugs that I get to inject each week, and they are starting to help. But on the other hand, I feel a shifting sense of identity as the fact of my diagnosis becomes real to me. It’s not a disease that will kill me. On the other hand, it’s not going to go away. I’m going to spend the rest of my life fighting against an enemy that wants to lock me in a stone cage made of my own body. I know its name now. And that’s good. But it’s not filling me with zest for life or an exciting new sense of purpose. Right now, it’s making me feel as if someone threw a brick at my head, and I’m just now sitting up and rubbing the bruise and going “whaaaa—?”
So dear friends and readers, please pardon my long absence. Perhaps now that I’ve told you what’s kept me away, I’ll be able to be silly, curious, and natural again. I hope so. I miss you.

Writing Prompt: Did you ever get any news that took a long time to digest?