Monday, September 9, 2013


So, I have a problem. A Big one. Ever since Dr. C, the Most Amazing Orthopedist, opened his mouth and said those magic words, “You’re a Spinal Cord Stimulator candidate finally”, I’ve been a giant bundle of nerves. A MASSIVE bundle of nerves. I’ve been puking, my appetite is wonky, I’m starved one second and food seems disgusting the next, I’m getting headaches. I know it’s all just nerves, but seriously. This has got to stop.

I know why my stomach is like this. It’s a family thing- we all have junky GI systems. I was born with extreme IBS-C, severe acid reflux, and gastroparesis (which is when the stomach doesn’t contract properly, so food doesn’t empty into the intestines, causing food to rot in the stomach, which causes nausea, vomiting, and limited appetite). I don’t even think about it most of the time these days, since I’ve been like this since the day I was born. My brother and several of my cousins are the same way, and my mom has a few issues of her own with her stomach. I have my GI issues mostly under control these days- heck, I can even eat some fried food and raw fruits and veggies again without puking! Well, I could, anyways. But as soon as I get stressed, bye-bye control.

I’m contemplating some serious meditation, but I’m not sure when I’ll find the time for that. Right now my Awesome Ortho wants me doing PT to build up strength pre-SCS trial, and my backs been bugging me, so on top of intensive (well, intensive for a RSD patient, anyways) lower body PT, I need to add back in upper body PT for a spell. Plus I need to finish re-finishing a kitchen table and chairs set so I have somewhere to sit up straight and eat/work on projects during the trial and, if I’m lucky, post-op of the final implant. Plus I need to rehab a cabinet I’ll be using as a pantry in my kitchen. I have extremely limited storage space that will reachable with the implant in, at least for the first few months, so I’m on a huge push to get that done. On top of all the wood working, I have some serious cooking/canning to do. The Killer Tomatoes are trying to eat me alive, with their hundreds upon hundreds of the little red things. I swear my bathroom smells like blanched tomato at this point. I’m pushing myself into negative Spoons every week trying to keep up.

But as far as the stress goes, I think I need to start combing the Chronic Bitches for information about free guided mediations for stress management. I have too many hopes and dreams wrapped up in this implant. It’s been my “someday” since I first learned about them 5 years ago. I don’t just want this to work, I NEED this to work. I’m only 26 and live in an area with very strict controls on narcotics. The meds they allow me still leave me trapped on crutches. PT (land and warm water), meds, massage, chiro (to keep my pelvis and spine aligned despite the limp), rest, carefully selected clothes, being best friends with a recliner- it’s all there to keep me upright with the help of my trusty crutches. My RSD has been on a slow and steady progression since the day it started- it started with less of a bang! than some cases, but that hasn’t kept it from becoming severe over time, aided along by the necessary hip surgeries to save my femur. If this fails, the options left include extremely expensive Hyperbaric Oxygen Therapy (known as Hbot), ketamine (a powerful anesthetic used in either long term infusions in the US or for short term comas in Mexico and Germany- it’s very experimental and controversial, plus extremely expensive at $20,000- $30,000), or an implanted device that drips narcotics directly onto the spinal cord. The remission many newly diagnosed patients can hope for isn’t an option for me- I had RSD for 6 years before I got a proper diagnosis. Remission for long term sufferers is nearly unheard of and trust me when I say we’ve tried just about everything thus far and with no luck. So, it's try the stimulator and keep my fingers crossed that it works.

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