Jan 14, 2017 | Fibromyalgia
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.
Dec 29, 2016 | Brain Tumor, Fibromyalgia
So, where was I? Or rather, what part of the story to tell next? This is not a linear tale, if you hadn’t noticed.
***
It was Tuesday morning that I contacted the folks at Illinois Neurological Institute about being evaluated for MS. That was after the Walgreen’s incident where I had to lift my leg into the car and also after a few casual “Have the doctors ruled out MS yet?” conversations. But it was before I recalled any of the episodes I detailed in Part 1 and Part 2 of this series.
***
“Before we can see you,” the representative from INI explained, “we’ll need a referral from your primary doctor and all of your records including lab work, scans, exams. We need someone from that office to call us so we can fax them a form to tell them what to fax back to us.”
“Um, OK. So first step is just to have my doctor’s office call you guys?”
“Yes.”
Great, I thought. There are about four too many steps for it to happen without my having to micromanage the whole damn process. Fuck. Fuckity fuck.
With the phone to my head, my laptop battery dead, and no paper nearby, I pulled a leg of my pajama pants up and wrote the needed info on my knee.
***
My primary doctor’s office said she would be out until January 4—which meant a whole week to second-guess myself. Of course, I started immediately.
See, when you’ve seen as many doctors as I have and you’ve suffered through dozens of medical tests that all come back negative, you start to wonder if you’re what’s wrong with you. I asked myself if I was being ridiculous and dramatic for wanting to see MS specialists.
Will it be worth the trouble of getting my records to them, traveling to Peoria, submitting myself to more tests? And what about when all of those tests come back negative? Will it have been worth it then, or will I wish I had just accepted my circumstances?
***
That’s when I decided to visit MSSociety.org and read some patient stories. They all talked about problems with vision, and I remembered that this was the thing that made me decide not to ask my doctor about MS tests several months back.
I have never had problems with my vision. I know it says that 3% of patients don’t have them, but I still don’t think… Oh. My. Shit.
In the middle of that thought, I remembered that time in 2005 when I was watching TV and there was a hole in my vision. And because I’d linked that moment to my vision-blurring migraines between 2011 and 2013, those memories washed over me too.
What if the start of my decline wasn’t in 2014? What if it goes all the way back to 2005? What if those were episodes of optic neuritis or whatever-the-hell?
I Googled with a mission:
…MS and aura
…MS and migraines
…MS and iron
…MS and vitamin D
…MS and GERD
…MS and nerve pain
…MS and burning feet
…MS and IBS
…MS and vertigo
…MS and falls
…MS and fibromyalgia
Long story short, I didn’t find anything that convinced me that being seen by MS doctors would be a waste of my time.
Dec 12, 2016 | Medical Cannabis
The second week on iron supplements has not been as dramatically fabulous as the first week was.
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.
Dec 7, 2016 | Fibromyalgia
Last night while lying in bed, I had a thought.
Maybe when we’re at Mom and Dad’s place for Christmas, I can walk to Joe’s Pizza & Pasta.
***
The biggest change in me since starting the iron supplements about a week ago has been my ability to see a different kind of future for myself. For several months, my health has done nothing but decline. No “remissions” or “good days” or even good moments.
I’d moved way beyond things like not being able to mow the lawn or drive my car and entered a very scary new place where inhaling was just this side of impossible. I struggled to sit up in bed, fell when I tried to walk. I stopped using my walking cane because I didn’t have the strength to hold on.
I could feel my system shutting down every time I ate or drank anything. My body was telling the rest of me, “Fine, we’ll try to deal with this food, but you should know that means you can do nothing else.” Eventually, I could sense my gut was just completely paralyzed. But not eating hardly seemed like a solution.
I was perpetually hungry, and I was perpetually unable to process what I ate.
For weeks I’d been asking myself questions like…
Am I dying?
How will Dan deal with the mortgage, taxes, utilities, food expenses if I am not here?
Where would I want him to spread my ashes?
Should I try to get more life insurance?
If all of this seems over the top and a little melodramatic to you, I assure you it is only because you have not been living inside this body of mine.
***
“I don’t know how to explain this,” I said to Dan this morning, “but I feel like I’m getting myself back.”
Dan didn’t say much, he just let me continue with what has recently become my morning iron supplement report.
I have to talk about what’s happening right now. I’m excited and overcome with joy. Sharing is an impulse, like raising your hands in the air and closing your eyes to see if the Holy Spirit is as tangible as you think it might be.
“Every piece of me—my legs, arms, skin, bowels, mind—all of it felt disconnected by the pain and the fog. They weren’t parts of a whole me, they were all just these separate burdens I was forced to drag around. No escape, no peace. Not ever.
“But last night there was no burning sensation in my legs or feet, and I woke up this morning knowing that I had slept.”
***
All day yesterday my stomach creaked and groaned, making the kinds of noises you’d expect to hear in an old house with radiant heat that’s starting up for the first time in about a decade.
Tick tick tick tick.
Creeeeeeeeak.
Hissssssssss.
I looked down at my food baby, conceived from a modest lunch, and smiled.
See you ’round, fucker.
***
Joe’s Pizza and Pasta is four-tenths of a mile from my parents’ house. It’s a favorite for Mom, Dad, Dan and me. In fact, Mom and Dad are regulars there because it’s so close and the pizza is so good. The waitress sometimes puts in their order when she sees them pull into the parking lot.
Ten days ago, I wouldn’t have let myself even dream about walking to the restaurant for the holiday pilgrimage.
Dec 5, 2016 | Fibromyalgia
When I got the results back from my iron blood test a while back, the doctor told me that I was within in normal range, though on the lower end of the spectrum.
| Component | Your Value | Standard Range |
|---|
| FERRITIN | 24.7 ng/mL | 8.0 – 388.0 ng/mL |
| IRON | 62 mcg/dL | 50 – 170 mcg/dL |
| TRANSFERRIN | 413.0 mg/dL | 200.0 – 360.0 mg/dL |
| T.IRON BINDING CAP | 615 mcg/dL | 250 – 400 mcg/dL |
| % SATURATION | 10 % | 15 – 50 % |
However, she also said that many of my symptoms, including the crazy burning pain sensations and involuntary flailing of my legs (RLS) seemed to indicate I was deficient. So despite low but normal results, her recommendation was this:
(more…)
