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May I present to you Her Royal Highness Christina with her dashing cloak and scepter?
I’ve had a rough couple of weeks, both physically and emotionally. This picture was taken on the night of the worst Chronic Fatigue Syndrome flareup I’ve ever had. Despite the fact that I brought my cane for support, I nearly collapsed in the middle of the grocery store because my legs were so weak. My cane, the skull-tipped “scepter” in the picture above, was something I’d bought as a costume prop a few years ago when I went to Comic Con as a Rogue Trader Captain. Turns out it’s actually sturdy enough to bear my weight, which I discovered one day this past winter after deciding I needed to have something to support me instead of crawling up the stairs. My “cloak” is a fuzzy fleece blanket I got from one of the first two Disney Social Media Moms conferences, which comforts me when I’m feeling awful. I’d been joking with Tom that they were my cloak and scepter, and I was amused by the juxtaposition of the skull cane and the Soft Kitty shirt, so I asked him to take a picture of me. He didn’t like the first “I am smiling” picture, so he asked me to try to smile bigger – because he knew I would hate the other pic – and this is what I could muster.
Until recently, Chronic Fatigue Syndrome was a mild thing for me. I had some pretty strict limits on the amount of activity I could do, but I’d worked myself up to being able to job half a mile on my Wii Fit a few months ago, and I was able to go out and do things like a normal person most of the time.
Then it got worse. Much worse. Very quickly.
I’ve needed my cane to just walk through the house, let alone up stairs or out in public. Public excursions of an hour or less required me to lie in bed for more than two hours afterward… not to sleep, but because my body was so weak and fatigued that I couldn’t sit upright. I couldn’t hold a book to read or hold my phone to play stupid smartphone games. I could just lie there, thinking. Not a good thing when you also struggle with depression, which had gotten pretty bad, too, since I was feeling hopeless about the fact that I may become truly disabled for the rest of my life. I never know if the next flareup will actually end or if it’s the new normal. Because a few years ago, my average day today would’ve been a flareup. Disease progression.
And so, when I was discussing the super depressing issue of loss with my therapist last Tuesday, I talked about my loss of ability. As I described how bad things had gotten lately, he said I should get checked out by my primary care doctor. When I said that would be nice, but I’d have to call to make the appointment – a deterrent because of my ridiculous phone phobia – he called and set up the appointment for me.
The next day, I was at my other doc’s office. She patiently read the list of symptoms I handed her (essentially a CFS cheat sheet) and decided we needed some serious action. CFS is a diagnosis of exclusion, and I should have had more extensive testing done years ago. But when my abnormal results had brought me to the hematologist, he was convinced that the anemia and such had its root in my GI tract, so he sent me to a gastroenterologist. Though he found things he could treat, he did not find the cause of my anemia, and the trail ended there for figuring out the mystery that is me.
So my doc ordered up a whole slue of bloodwork for me – 20 different tests.
Her prime suspects right now are rheumatoid arthritis (RA) and lupus. She’s pretty sure this is an autoimmune disease, as my past bloodwork has pretty much always shown some sort of inflammation. Since I’ve carried a diagnosis of chronic hives for 25 years, every doctor or specialist I’ve ever seen attributed it to that. Now my doctor latched onto the fact that my “hives” don’t itch. She thinks I’ve had the wrong diagnosis for my spots all along. I think that’s why she suspects lupus, though the dermatology book she flipped through didn’t picture a lupus rash that look like mine.
So I went from being severely depressed about being potentially disabled for life to being hopeful about the future because I may get a diagnosis that could lead to some sort of helpful treatment. Literally overnight.
The next day, I went to the lab to get my blood drawn. Seven vials, and I didn’t bruise at all.
The depression came back as I went on to have my worst day ever on Saturday, when the top picture was taken.
The emotional roller coaster continued when someone in one of my CFS groups mentioned trying an epsom salt bath. It did help my legs feel better, but I had to feel much worse first. Soaking in a hot bath does not go well with my heat intolerance, which manifests in dizziness and weakness. So epsom salt baths help…but only after I recover from making myself feel worse by taking the bath in the first place. I still don’t know if this is a good thing or a bad thing, taking these baths. I guess that will be determined on a case by case basis.
Update: Half an hour before this post was scheduled to go live, the doctor’s office called about some of my test results. My SED rate and CRP were elevated, indicating some sort of inflammation. (Not surprised.) I’m slightly anemic, which I also knew, and they want me to pick up some OTC Feosol. My ANA was borderline with a speckled pattern, which is indicative of several different diseases. The upshot is that they are setting up an appointment for me with a rheumatologist who can help me figure out where to go from here.
Read my Big Fat Medical Update for more details.
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
