Tag Archives: spoonies

Dr. Fallible…

you listened to me
and when my body’s tale changed
you tried something new

saying they were just
words put on symptoms for the
insurance company

and not the be all
end all final sentence of
my one existence.

you treated my whole
not just the sum of my parts
saying it’s an art

not only a science.
when we fail to find a fix
we should always ask

are we looking right
where we should be or do we
need to start anew?

I’ve never met a
single other doctor quite
as lovely as you.

— mmorehead 03-04-21

Clue x 4…

I admit that sometimes I can be a little dense. It’s less an awareness thing and more an OCD classification/categorization thing. Also occasionally an overthinking thing.

For example; when I was in law school I went to see the gynecologist for a routine checkup and spent 15 minutes agonizing over the question on the intake form “Could you be pregnant? Yes or No?”
See, I was sexually active and while I did have an IUD there was statistically a .09% chance I could be pregnant, which is what I said to the receptionist at the front desk when I asked her advice as to how to best answer the question. She, of course, asked me if I was pregnant. I said “No.” She said “Circle the no.” You could hear her eyes roll all the way in Africa.

So I get that sometimes the way my mind works differs greatly from the way everyone else’s minds work, so it was no surprise to me that I only clued in to the fact that I am legitimately really quite sick yesterday while my whole family has been acutely aware of this fact for the past two weeks.

From their perspective I have been losing weight drastically, can’t eat more than 500 or 600 calories a day, have a hard time getting out of bed or leaving the house, and feel like I have the flu most of the time.

From my perspective, until yesterday, I only have a month to go until the doctor can actually fix what is wrong with me this time and therefore it’s not really that bad.

See for the past seven years every time I have gone to the doctor with a new or worsening symptom I have been given a new horrible medication and the explanation that my chronic illnesses are still kind of not well understood, lifelong, incurable, and will fuck me up forever so when I went in to see the doc about the fact that my intestines have wrapped around an adhesion in my abdomen left over from my hysterectomy and he said “No problem, we can remove that with surgery and you’ll be fine.” I was FREAKING CELEBRATING!!

I had a medical issue that could be fixed with relative ease in a relatively short amount of time with a really short recovery time!! This isn’t being sick! This is amazing!!

So that was my state of mind of the past two weeks as my family fretted over me and I hummed and buzzed about cheerfully not eating and being curled up in heated blankets and generally feeling yucky but knowing it was ACTUALLY TEMPORARY and WOULD END SOON and I WAS GOING TO IMPROVE!!

Then yesterday as my husband and I prepared for him to go back to work for the week I asked if we could spend fifteen minutes cleaning up so I could have a pleasant room to convalesce in.

Fifteen minutes.

I vacuumed. Moved a few items to the trash. Put my clothes in a hamper.

I broke into a heavy sweat and nearly passed out. I had to lie down.

That’s when I turned to my dearest love and said:
“Shit, I’m really sick aren’t I?”

To his eternal credit he wasn’t snarky at all when he responded. All he said as he sat next to me, took my hand, and held it was:
“Yes honey, you are. I’ve been fretting over you.”

Topomax sucks…

I was never going to try it again. Having experienced the word loss and extreme side effects of being on it once I was never going to let its chemical compounds cross the threshold of these lips again.

That is, until I failed everything else.

It was the only drug I’d ever responded to but back when I had it was one of many options that had so many negative side effects I couldn’t imagine staying on it when there were other, possibly less horrible options out there for me.

But now there aren’t.

To try and combat the side effect roller coaster we are starting ultra-low and upping slowly, especially since I have proven myself to be extra-sensitive to side effects. Even starting at 15mg a day I tasted pennies immediately. 6 weeks later at 45 mg a day I was feeling achy everywhere, having a sore throat, and never feeling hungry. 8 weeks in, at 60 mg a day, I’m still 340 mg away from the minimum effective therapeutic dosage and the side effects are staggering.

I taste copper all the time, with everything. Everything has a tangy, metallic smell. I am never hungry and my stomach always hurts. My muscles and bones feel like I have a high fever, that aching sensation that comes with the flu, and my joints hurt constantly. I have diarrhea, which is amazing since I also have a partial bowel obstruction. I’ve lost 7 pounds this past week. I’m dizzy, lightheaded, and itchy.

Each time I up the does by 15mg I have a huge uptick in side effects. So far each time they taper down after several days and get more manageable. I’m hoping they do so this time too, though this is by far the worst I have felt so I am feeling doubtful.

The good news is so far I haven’t had the direct mental capability loss I had last time. Last time it was like someone had turned my brain off. Everyone joked about me entering my mid-thirties being the cause and didn’t understand how terrifying it is to have the ability to draw forth anything you want from memory on Monday and then nothing from memory Tuesday but that’s how it went for me last time I was on this drug.

This time it’s more like I go to find the file and I have to look in another drawer because I suddenly remember it never got put back properly. So that aspect is better. So far.

However, I’m only a fifth of where I need to be to get results from this drug and I feel like I’ve been hit by a truck. I’m not sure I can give myself a pretty serious flu-like week every few weeks for the next 6-8 months while I ramp up to the right dosage.

Topomax seriously sucks. The question is, does it suck more, or less, than untreated Fibromyalgia?

UPDATE: I was wrong about the minimum effective dose!! It’s only 50 mg! There’s hope. I am already here and only need to see if it starts helping out after a few weeks.

Silvery slivers of linings peeking over the clouds.