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It’s gotta get worse before it gets better

August 7, 2011

Yesterday dropped so far downhill so fast. While I was working on pt. 2 of the in the middle entries, I was thinking about my last true attack (not just a flareup). The one that lasted for months and took my legs for a few days before I finally caved and bought a cane. It felt like it happened a million years ago. While I’ve had times since then that I’ve felt like absolute garbage, it never got that bad again. I almost forgot what it really felt like. I got a really horrible reminder of what it’s like yesterday.

I’m still blaming this on hormones and a rise in body temperature, but I was stuck using my cane again yesterday. My left curled has started curling inward again so I’m walking on the outer side of my foot. My toes keep fanning up and I can’t move them. My right thigh has cramped (last night I couldn’t straighten my leg out, it’s still hard to do it now but I can push it straight with my hands). Spasms in my left thigh, calves, and feet. The aching deep in all the muscles of my legs, back, and arms is horrible.  My hands are still shaking, and the numbness has spread from my fingertips into my palms and is slowly working its way into the back of my hands. There is some numbness in the surface of my legs as well. I get that wave of tingling down my back into my arms and legs again when I look down, but still not sharp electric pain shooting into the back of my head or neck when I do it. My energy level is still surprisingly high, but my mind is a little bit foggy. My saliva is really thick no matter how much water I drink, and had a really bad choking incident last night before bed. Had a bit of dizziness yesterday but thankfully that went away. Plenty of tingles and pins and needles of course. That weird thing where it feels like my skin is wet despite being dry is back again. The worst of it though is that the “hug” is back.

It’s not as intense as it was before, but it’s covering more area and it’s lasting longer than before. It’s in my legs (from my toes up to about an inch below my knees), in my wrists, and my stomach, back, and chest. It’s not painful but it is making it hard to breathe. I have to keep taking long, small, slow breaths. I get out of breath just from walking around the house. Sitting down or laying down with anything touching my chest or back is horribly uncomfortable. It choked for longer than I usually do last night because of this “hug”, since I couldn’t take in deep gasps of air. I have no idea what time it started at, but it’s still there and didn’t let up when I was trying to sleep, so it’s the longest “hug” so far.

My head and jaw are killing me from clenching my jaw in my sleep. I took a muscle relaxant before bed (helped with my legs a little bit), a sleeping pill (which did sweet fuck all to help me sleep), and a pain reliever that I normally avoid because of the tegretol. To my surprise it worked a lot better than my usual pain reliever, so I’m definitely going to be cycling them more from now on. Spent several hours glued to the couch last night covered in ice packs and intended to sleep there because it was just too difficult to walk to the bedroom. But, I had the AC on in the bedroom (it was like a freezer in there, wonderful), so I managed to hobble my way into my own bed (though I did have a little spill in the hallway. Hit the wall instead of the floor though and managed to get myself upright again with the cane).

I probably won’t be updating as often because of this. I need to spend a lot of time and energy on getting my legs straightened out and doing whatever exercise I can. I decided I wasn’t going to bother talking to disability services at the school about any of this because they require a bunch of forms signed by a doc stating your diagnosis and you have to have had the disability for a certain amount of months before you can get any help. The woman that runs it though is really sweet, so I’m going to try to get a meeting with her just to explain what is going on, how I can’t get the forms signed yet but I had periods where it’s extremely difficult to walk and such and see what she says. At least then she’ll be able to have a meeting with my professors about it instead of me having to run all over trying to track each one of them down to discuss it with them myself.

Was surprised by an e-mail I got last night. Looks like I wasn’t brushed off by the TN support group. They are having a BBQ in the area later this month. I’m not sure if I’ll be able to make it, but it would be nice I hope. It could also be really awkward though. I haven’t heard many stories of people having good luck with face to face support groups, and the odds of having someone else my age there is pretty low. Still though, it couldn’t hurt, right? I’m just hoping it’s not really hot the day of the BBQ and I’m in decent enough shape to drive.

Now then, the last thing…my spinal MRI. No appointment yet but I’m not waiting on edge for the call like I was last time. Wait times in this province are very long, so I’m not expecting to get it done until winter. Just thankful that I don’t have to pay for it. The thing that is concerning me about it though is that a lot of the symptoms I’m going through are usually the result of spinal lesions. Lesions on the spine though are also hard to find. If after the MRI, Dr. Kickass declares this to be fibromyalgia and doesn’t go any further with testing….I’m going to be getting a second opinion. I respect her a lot as a doctor, but because of the report stating a clear brain MRI (never got the images, just the report, so my images were never seen by a doctor) she seems fairly hellbent on this being fibro. If that’s what it comes to, I will ask her about this “hug” (which is NOT caused by fibro) and the choking. In some cases a spinal tap can confirm both MS and fibromyalgia (that’s right, fibro is NOT a “garbage can” diagnosis, it is a real disease), so I don’t think I’ll be 100% satisfied with any diagnosis until that is done.

I’m still confident that these symptoms will only last for a few more days. I could be wrong, but hey, might as well stay positive about it. I’ve got to find a place in town that offers decent massages. Or hire a man servant…..ya, I think I’ll go with the man servant.

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