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Thursday, February 19, 2015

THE LAW, and a basic understanding of my rights

I. Can't. Sit. >=l


I have to keep springing forth. I'm super thrilled that I'm actually walking with minimal pain (do twinges count?) and that I'm still bendy and capable (I've been sooooo much worse in the past), but now that sciatic lesion is an established thing and we're openly discussing the serious options after years of therapy and strength training suddenly epic failing me last month, I'm having to rethink my entire year going forward. Nothing screws up a schedule of any kind like sudden partial paralysis and bullet pains shooting holes in the walls.

First item on the table- lose weight before possible emergency surgery (hoping it doesn't come to that) so everything between cutting me open and follow up therapy will be easier. Since I've done nursing clinicals, I know this is a big deal, even though I'm not that heavy compared to the typical aging diabetic women my age. My weight has been so steady the last few months no matter what I do (which is actually a good thing when you jump on and off cancer watches, and a really good thing when you're diabetic because it's super typical to keep gaining), it's like my body is THE LAW and I'm just along for the ride.


Second item on the table- rearrange my work area. Ug. Most of you guys probably had no idea that much of my first year on twitter as Pinky was done standing up and moving around. It was before I had twitter on a phone, and my laptop was set up on a kitchen counter, and I continually moved around doing things in between tweeting. When I got twitter on a phone I was able to lay on the couch and tweet, THAT was awesome. Well, that's kind of gone again, and another year has flown by, and I'm looking at all the ways I've stalled to a standstill again on some of my projects, and I refuse (keep refusing) to let myself become bitter about any of it. I'm gonna crawl till I die, come hell or high water, my projects are all getting done a molecule at a time. So TODAY is all about moving everything off a counter in my kitchen again and staying away from this chair at the table. (I'm actually standing in front of it right now.) The key will be to keep moving, because standing for any length of time is actually tougher than sitting (spinal injuries are no joke), so I will type a few sentences, go wash a dish, type a few more sentences, go pick up something in the livingroom, etc. most of the day. When it gets this bad, a whole lot of housework gets done. When I get desperate, I even do windows. This is a funny post by Meghan, by the way, click this.


Third item on the table- Scott has already addressed my restrictions. I'm not allowed outside in any kind of inclement weather since I've hurt myself three different times since 2008 during lumbar fail, resulting in months of barely being able to walk around my own home, staples in my knee, and a concussion check in the ER. Heavy lifting without supervision is out again. I voluntarily don't shower while I'm home alone since I found out first hand that wildly ricocheting at high speed around a wet bathroom is one of the most painful things a person can go through. (That sentence cracks me up, I'm standing here laughing.) Basically, I do what I've been trained to do by professionals with doctorates in physical therapy- use my head, move correctly, do my stretches, and keep up core strength. The most important things I can do are retain my mobility and keep my core from becoming weak again. I had so little mobility from head to toe for a few years that it looked like I'd never be able to do normal things again, and that led to such a huge loss of strength that I could barely even do housework. I was such a strong person until 2004, I could actually pick Scott up off the floor. I'd really like to get that back.


From a private post written on April 3, 2009. It was about nerve problems in my neck that I'd lived with ever since I was thrown out of a flipping car, and the Lhermitte's sign I developed had finally become almost unlivable, among other distressful pain. I never had the surgery or even the shots, electing instead to first try chiropractics and physical therapy, with awesome results, although I had to be very patient and persistent to see results, and I'm still working on recovery. It takes a whole lot of stubborn to get through some levels of pain, but pain isn't always bad. Sometimes healing is as painful as an initial injury, and pain is good because it means the nerve is still working. A complete loss of pain after spinal cord injuries is ~bad~. Accepting pain as a good thing goes a long way toward dealing with it.

April 3, 2009

Here's where I am with the latest visit to a pain specialist in a big pain/surgery center.


Aside from being offered an extensive list of meds I already know I can't take and physical therapy I know insurance will throw a fit over and won't address or solve my personal medical issues because they have to stick to defined insurance protocols, I have the option of having anesthesia squirted directly into my spine while I'm semi-sedated in radiology, with heavy concerns that 1- I'll have a hyper reaction to it like I do everything else and wind up in lupus flareup or something (this guy said a person like me could react even to needles, I'd never thought of that), or 2- it simply won't last a reasonable enough amount of time to be worth it.  If they add steroid, complications could rise exponentially, and then the next step after that is neuroablation.

"Neuroablation is used as a last resort when other attempts to eliminate pain have failed. It uses heat to destroy nerves that send pain signals to and from the brain. It is used for back pain and referred pain in other parts of the body. It can be permanent, but sometimes the nerves will grow back."

Um, they'd pretty much have to destroy the entire nerve bundle right at the base of my skull...  And that still wouldn't stop the cranial and trigeminal nerves around my skull from throwing migraines at me.

This guy thinks my pain isn't so much from the disk bulge, which is very slight on the MRI (although he can actually feel it with his finger, which I'm thinking means if they'd turned me differently, it might look bigger on the film, because the bulge is closer to the side than the back), but from the fibro, and there pretty much isn't anything he can do about that.  Personally, I still think this is a slowly progressing nervous system disorder related to long-term viral infection along my nerve pathways and lupus-fibro complicating how my body handles it, but since no one can actually *see* any damage until lesions show up (and by then it's too late, you're crippled and there's no hope), no one can really say for sure.  I can't tell you how many times if I've been checked for everything from multiple sclerosis to cancers.

Anyway, in spite of all that, he put a floating order in the system that I have a full year to take advantage of when I decide I'm desperate enough to try it.  I told him there have been a few days this winter I was ready to tazer myself, he thought that was a good one.

Whatever is going on inside of me, I've outlasted it for 20 years, and I'm thinking I can be stubborn enough to go for 20 more.  If Jack Bauer can survive a Chinese prison, I can survive this.


You guys didn't see me get all my dishes done and laundry going and my bed made and a grocery list started while I was walking around this post. I made this. Now it's time to GET TO WORK!!!!!


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