Category Archives: fibromyalgia

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Too hungry to sleep…

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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.

#chronicillness, #eatingissues, #fibromyalgia, #intestinalblockage, #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.

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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.