Category Archives: Spoonie

#chronicillness, #eatingissues, #fibromyalgia, #spoonie, #topomax, Chronic pain, fibromyalgia, Food, frustration, health, Spoonie, Spoons

My kinky side…

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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.

Blog, fibromyalgia, Frivolity, Healing, home, Hope, Just me, Love, Migraine, Motherhood, Observations, Poetry, random, Self over analysis, Spoonie, writing

My squirrelly niche…

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A long time ago I started this blog with the vague idea that I would become a titan of the blogosphere, writing about being a mom and a lawyer, writing about saving the environment for my children, writing about making my own baby food while crossposting articles from my side gig writing for Attachment Parenting International.

During this time of grandiosity I studied the art of blogging as only a woman who just sat for the Bar Exam after three and a half years of intensive study and then became a stay at home mother in rural New Jersey can, obsessively. I learned you are supposed to choose your niche and write about it passionately, truthfully, and with a raw openness that lets complete strangers into your bleeding inner core in a way you don’t even let your friends in.

That my dears is the way to internet stardom.

Well I don’t have a problem with writing passionately, or really with bleeding my feelings all over the internet. Y’all are really pretty decent and besides, it’s not like I’m going to run into to you at the next cocktail party and have that embarrassing moment when you recognize me. No, my problem was always the niche.

See I, my dear friends, am an interest whore.

I am interested in ALL THE THINGS. I want to read about the things and learn to do the things and write about the things. I want to blog about being a mom and a spoonie and an artist who paints and also makes stuff in 3D and also draws and also makes cards but is also a poet but also writes serious stuff but writes about being sick but can cook and wants to share recipes and loves to take pictures and did you know I make jewelry and am a silversmith and am looking at wood working and oooooh let me share my photography with you and here’s the song I started writing to go with the Kalimba I started playing to help with pain management and do you Yoga and have you tried kayaking and did you know the neuroscience behind exercise and fibromyalgia and the venom in tarantulas in Peru and I have some really good ways my husband and I deal with being chronically ill and I can share those with you and I can talk about parenting teens and….

Yeah. What I am passionate about and interested in is the same thing a fleet of hyperactive squirrels on too much caffeine are interested in and passionate about. Everything.

So after years of trying to write about what fits in the narrowly defined idea of a blog about something other people might like to read I have just given up officially and am just going to put it all out here.

I’m writing down poems and sharing the art. I’m going to talk about the pain and the things that help, the kids and the world and the interesting things I find. I’m going to share and overshare and I am going to enjoy it. Because I finally did find my niche.

It’s me. I’m my niche.

Chronic pain, chronicillness, chronicpain, fibromyalgia, health, Migraine, Mygraine, Spoonie, spoonies, Spoons

Topomax sucks…

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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.