Category Archives: health

My squirrelly niche…

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.

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.

Old man winter is a sadist…

Ugh whatever is up in the Rocky Mountains right now is seriously sadistic. Nearly everyone I know is having unusual numbers of headaches and those of us who were already living life in the unusual column are clinging to the edge of the ledger by our fingertips praying to gods we don’t even believe in that a Peruvian Green Velvet Tarantula comes along and bites us.

That being said I walked today. I was able to do so because an amazing friend of mine created an amazing device for me.

See, I have some combination of facial neuralgia and parathesia that moves around my head. Some days I can wear glasses and masks and hats just fine. Others I can’t touch behind my left ear. Other days a wind across my face sends me to my knees. Lately I haven’t been able to wear anything behind my ears or touching most of my head for longer than a few minutes without my headache ramping up to GO-LIE-DOWN-NOW proportions.

As we are still amidst a global pandemic and I value my life and the lives of others this means I haven’t been able to go anywhere for very long.

Enter Scott.

Scott is a maker. He is a creator, a daydreamer, an inventor of wonderful things. He fiddles with things to make them better. He is strange and funny and wonderful and when I texted him and told him I needed his help he dropped everything to invent me this:

Why yes, that IS a neck mounted headgear-like device to hold your mask flush to your face without it touching the parts of your head that have inexplicably decided that touching is verra verra bad.

See:

So now even though my body doesn’t like wearing masks and the world is still basically a dangerous petri dish I can now go to the grocery store or for a walk with my husband and dogs without suffering for it.

What is the point of all this rambling?

There are three points actually.

Point one: I am on day three of my exercise for 15-20 minutes every day regardless of how I feel fibromyalgia treatment streak. Yay me! (Y’all are my accountability partners. Don’t you feel lucky?)

Point two: If you see an oddball creative person that thinks differently do walk past them afraid to meet their eyes. Go introduce yourself to them and try to see if your weird meshes with theirs. You never know when you will need a creative fiddler in your life.

Point three: If you are an odd duck, don’t fret. There are those of out here who celebrate and value you precisely because you don’t think like everyone else. If you feel alone now hold on. You will find other oddballs (like I did. I now have a lovely chosen family of tried and true oddballs in my life) to be your true self around but better yet, the older you get the more non-oddballs will see having oddballs in their lives make those lives fuller and more fun. So don’t give up. You are important. You are made of stardust. (Literally. Ok, I know we all are but I like to think we strange ones have just a little extra stardust than everyone else.)

Stay safe lovelies, and be kind to one another.