Category Archives: chronicillness

The inevitable slide…

One thing people don’t really talk about is the slow inevitable slide of progressive illness. I’ve been sick for about 16 years now, disabled for 5, and for most of that time people in my life keep asking me if I feel better.

I will never feel better.

At each stage of my particular disease I have felt the best I will ever feel again because I have a progressive disease that is killing me very, very slowly.

It’s like being murdered by a tiny snail, or stalked by death in the form of a tortoise. You’ve got a long, long time to contemplate your end, but you feel every single step of your demise.

This year has been a slide. I’ve been sicker than usual more often than not. Less able to do, more susceptible to the usual colds milling around, more exhausted after activity. Even as I have increased my exercise, improved my diet, dialed in my medications, I am feeling the slip.

Today I am on day 8 of a respiratory illness that has had me in bed unable to do much of anything all week. I know I will recover from this cold and get back to life but I also know I will be slower, weaker. It will take me a lot longer to get my breath back, to get back to the 30 minute 3 mile walks with my dog 5 times a week. To get back to lifting and gardening and hula hooping. To get back to anything really.

And it all feels so daunting. The clawing back to the surface from deep inside this hole. Especially knowing how easily another cold can come along and knock me down. Making the process start all over again.

If you are a healthy, mobile person do me a favor please. Pause and take a moment to truly revel in all the amazing things your body can do.

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.

Broken, not broken enough…

My broken is not broken enough
to get the help I need
to stop the bleed

of endless co-pays and medical bills
of supplement costs
of specialist fees.

any adventure I manage to have
any life I squeeze
any pleasure I tease

from this tattered body and shattered dreams
becomes the reason You see
to refuse the need.

my broken is not broken enough
i should be deteriorating more
lying prone on the floor

or screaming in torment and pain
unable to enjoy a thing
enterally suffering.

my walk with the dog around the block
isn’t a sign that I’m lying
i don’t have to be constantly crying

to need help and support
from my village
it isn’t my intent to pillage

i would work if I could.

You would see the food thrown to the crows
rather than let it slip
through my lips

because it might have been earned with your labor
and You never need a favor
everything You have You worked for.

You personally paid for the street that was laid
for your car to traverse
on your way to work.

And the water You mindlessly drink
from your kitchen sink
comes from your well

dug with your own hands at your own cost
You got nothing from us
never even rode a bus.

My broken isn’t broken enough
to stir empathy
in your heart

You lack the sympathy
to understand
You won’t lend a hand

You are your own man.