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.
Three days ago, I was so close to canceling my sleep consult appointment. Like finger-on-the-green-call-icon close.
I generally face anxiety for three days prior to any scheduled outing. It’s not that I have genuine phobias about people or doctors or medical facilities. It’s just that it’s so hard. I mean, have we talked about how I get dizzy trying to brush my teeth yet? So, yeah. I get worked up about errand and appointment struggles days before I actually have to do them.
I didn’t cancel the appointment though—despite fretting it would be another dead end and waste of spoons—and I’m mostly glad I didn’t.
For one thing, when we got to the parking garage elevators, there were two hospital wheelchairs waiting. I was almost giddy; thought I’d have to make it all the way to the main lobby before landing one. But there was a red one and a blue one right in front of me. The wheelchair version of Take a Penny, Leave a Penny.
“Dan, will you push me in one of these?”
It was actually kind of fun. Like back in the day when Dan would take the doors off his Jeep and drive us in circles around the roundabout at the end of our street.
Instead of my usual doc visit blood pressure (in the area of 140/90-something), I was a reasonably stressed 126/88.
The nurse practitioner I saw today is recommending me for the on-site sleep study. I don’t know when that will happen yet, because insurance and pre-authorization and blah, blah, blah. But she was optimistic the first study could happen within the next month or so.
Parts of the Sleep Study
- Initial Consult (Did that today.)
- Sleep Study 1: Stay overnight hooked up to wires to determine if I have apnea and or RLS/limb movement.
- Sleep Study 2: Happens if Study 1 determines I have apnea. They’ll fit me for a CPAP and document whether it’s helping.
- Follow-up Consult
My fatigue has gone from a 10 to about an 8—which is still shitty, but any improvement is welcome when you’re chronic—and that’s improved my mood. I even had a positive thought: What if I do have sleep apnea and actually getting oxygen through my airways at night fixes everything?
Time will tell, I guess.