New game plan: get my primary doctor to order an MRI (or get me in the door of a doctor who can and will).
Getting into the MS Center does not seem likely at this point. That’s primarily because as a sick person, I don’t have the energy and resources I need to force the issue. My insurance lets me see whatever doctors I want, but getting my records to Peoria? I might as well try to send my test results to Mars.
I still work full time. There are spoons left for nothing else. And my physical abilities continue to decline.
I don’t totally give up, but I do give up a little. You know what I mean?
I was feeling slightly better there for a couple of days, and I had almost decided that ruling out MS was just going to waste me time and money. But then I got slammed with another flare up of symptoms.
Last night I took a shower, but got two toes stuck in the leg hole of my underwear. I couldn’t get my leg pushed through the opening and pull them up and I couldn’t free my toes.
I also couldn’t lift my leg out of the underwear to reverse course and start over. Defeated, I just stood with one hand on the shower door and one hand on my tangled up Hanes and started crying. I was about 30 seconds from collapsing due to exhaustion when Dan rescued me from my self-pity.
My vertigo came back with a vengeance, despite the fact that I haven’t taken (or needed) a Nexium in 15 days. So, Nexium apparently isn’t my problem. Still don’t have any plans to continue taking it unless my GERD rears its ugly head again.
My sleep studies are scheduled to start at the end of March. I’m confident they’ll find nothing, because no tests ever find anything.
I haven’t been feeling well lately. I know, right? You are so surprised.
Thought I’d follow up with my progress in regards to the iron supplements and my fibromyalgia. Which is a pretty easy task, because there is no more progress to report. I’m still taking the supplements, and the burning in my legs and feet is less frequent. But the initial shot of energy and hope I had during that first week—hope that this was what was wrong with me—has all but completely fizzled.
I was anticipating a call from the sleep specialist this week to schedule the sleep study, but it didn’t happen. (The sleep study requires pre-auth from my insurance company, so I’m guessing there’s some negligence or outright denial of coverage on the part of my insurance provider.)
Whatever. I’m too drained to check on it. It’ll either happen or it won’t.
Nothing is happening as far as my getting into the MS Center at Illinois Neurological Institute either. My last move was to clarify whether my primary doctor’s office had simply put in a referral to my insurance (which is not required) or whether they had communicated with INI to start transferring my records to them (which is required).
Of course, my primary doctor’s office hasn’t responded to that question, which I asked nearly two weeks ago. I’m feeling more and more like my doctor and the nurse practitioner there just want me to wait for another scary episode and go to emergency. Proactive healthcare in this country is a fucking farce. It essentially consists of flu shots and colonoscopies after age 50.
If there’s one bright spot, it’s that I haven’t taken Nexium in 11 days, because I haven’t needed it. Doing without it hasn’t completely stopped my dizziness, but it’s lower. I feel like falling isn’t as likely right now. So there’s that.
I’ve read that it can take a couple of months for the iron-deficient anemic to feel all better. I don’t know what that means for me, exactly. I don’t think I’m anemic per se; I think whatever is wrong with my body has depleted me of essential vitamins and minerals.
So what’s my next step? To keep taking the iron.
If everything is magically fixed because of it, hooray! If it’s not, at least I feel alive now. I’m also trying the probiotic thing again. I honestly don’t know if the Align helps, but the GI doc recommended it and I’ve got four weeks of capsules left.
I’m also now officially convinced that the weight I lost over the last few months had nothing to do with my willpower and everything to do with my IBS. Reversed course on the IBS and all the weight came back. But fuck it, weight is not my first priority. It’s not even top ten right now.
So pill roll call. Maybe TMI for some, but mostly posted so my fellow fibromyalgia patients can compare/contrast.
Levothyroxine*, daily AM
Tri-sprintec lo*, daily AM
Ferrous Sulfate (iron) 325 mg, twice daily with meal
Zinc, D3, Magnesium, Calcium combo pill, twice daily with meal
Align, daily with lunch
Nortriptyline, daily at bedtime
Nexium, every other day/as needed (Rx is for every day, but I discovered I could be symptom-free taking it less frequently)
Medical marijuana, 1/4 gummy as needed at bedtime
* Prescribed many years before I had any fibro symptoms, but thought I should be thorough.