Category Archives: Spoons

Too hungry to sleep…

yet too full to eat. Last night was a special kind of party. I lay awake with a rumbling belly, thinking about all the food I have enjoyed eating over the years in great detail, while I tried desperately to keep down the 1/2 cup of meat and veggies I managed to eat at dinner.

It was an experience I am not looking forward to repeating. In fact, right now I’m writing here instead of sipping at the disgusting copper-flavored vanilla protein shake I am too full to drink despite having eating nothing since 7 pm last night.

On the upside I have now lost 11 pounds since this all started. Only a month left to go. I have the excess weight to lose and if I can use this miserable experience as a jumping off point for exercise then I can actually start running again and maybe keep it off.

My amazing neuro told me that Fibromyalgia is a syndrome that attacks and destroys the small nerve fibers in the body, hence the pain, itching, tingling, etc. However, the good news is that exercise and motion of any kind creates new small nerve fibers, so movement literally floods our bodies with new soldiers for the fight, which is why it’s important to keep moving. I was doing a really good job with Couch to 5K but the combination of gaining muscle weight and then Lyrica weight made the running too hard on my knees so I had to stop, but I miss it. I would like to do it again and I know my puppy would like to join me. So, maybe this month will be a good place to jump start running.

See, silver lining. Not all bad. Gonna take a disgusting sip of chalky copper vanilla shake now.

Yuck.

I would just slam it to avoid the flavor but I did that yesterday and spent an hour trying not to throw it up. So, the good news about rebuilding those nerve fibers is that it’s not exercise per se that does it, it’s movement. One of the ways I make sure I move some every day, even on the worst days, is I make my arms and feet dance every time there is music played during a movie or TV show.

I also routinely perform wrist rolls, ankle rolls, and neck stretches as I rest. While there are a ton of exercises and programs out there, Yoga, VR boxing, dancing, etc., my doc was clear, movement is the key to helping out our bodies so that is what I focus on. Sometimes my only movement in a day is doing my laundry or vacuuming my floor because that’s all I can do, and that’s ok.

Stay safe loves, I’m going to try and finish this shake and maybe, just maybe, get all the stuffy fluff my puppy has strewn about the room into a trash can so I can pretend, for a hot second, that I live in a clean house.

My kinky side…

I’ve lost ten pounds in the last nine days because I can’t eat more than a few hundred calories. Every day I can eat less than the day before because every day my stomach shrinks and my sense of feeling fuller happens after less food and my sense of “OMG I’m going to pull a Exorcist at the table” happens after fewer and fewer bites.

Today it was half an avocado for breakfast. I didn’t even make it all the way through before I felt ill.
For lunch I drank a protein shake and felt pretty good about finishing it before I realized it only had 190 calories and not the 390 I thought it did.
Then I managed a whole 5 Hershey’s kisses.
Just now I ate 1/2 of dinner consisting of cream of broccoli soup mixed with ground beef, steamed veggies, and nutritional yeast.

I feel as though I have eaten Thanksgiving dinner. I’m trying not to hurl.

Only four and a half more weeks until surgery to fix the “kink in my hose” as the surgeon described the portion of my small intestine wrapped around scar tissue in my abdomen. Until then it’s my own personal version of Biggest Loser, Starvation Edition.

To add a fun element to the party I am tapering up on Topomax which kills the hunger signal, makes me feel full(er), AND makes every taste as though my mouth is coated in blood or pennies. (As an aside, I would not make a good vampire. Their diet is disgusting. There will be no Un-Deading it for THIS girl.)

So I am also popping pills every night that make eating even more difficult and less fun. Further, the pills make me feel as though I have the flu so I have spent the past week feeling all over body aches and bone and joint pain well beyond the normal Fibro party.

Kids, Don’t do Drugs. They seriously mess with you.

Well my husband just arrived with a nice bottle of wine from the 19 Crimes collection. I will probably have a sip or two before I am tempted to spit it out as it will taste revolting BUT damnit I will have some!!!

Stay safe loves.

UPDATE: The wine tasted like soap. SOAP! Everything else tastes like copper but the wine tastes soapy? I couldn’t even manage to sip enough to get the slightest bit loopy, even on so few calories. I feel cheated.

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.