Thursday, January 24, 2013

ENMG and TMS and OMFG.

Ugh. Today I had to go through the annoyance of having my neural pathways re-examined and the horrifyingly disgusting feeling of having magnetic impulses sent straight into the part of my brain that controls body movements.

The ENMG is okay, it's only slightly annoying. But the TMS thing, oh my god how I loathe it. This was the second time they did the TMS procedure and I was feeling really fucking anxious beforehand, because the operation had caused my EDS aches in my limbs to flare up really bad back when I was still paralyzed and in hospital. This time it felt slightly different, probably due to my legs working again, but it was still terrible. I could barely walk afterwards. Luckily I had my walker with me and my darling husband there to help me. And my painkillers ready and waiting for me in my bag.

There is something SO horrible with magnetic impulses and EDS combined. I still feel like there's a magnetic storm going on in my head, my arms and legs ache and my back, well, let's not go into that, because that would not be pretty, were I to describe how my back feels right now. LOTS of cursing, that's what it'd be.

Anyway, I got them examinations done and hopefully never have to go through the TMS again. 

Had to buy cigarettes from the hospital kiosk and have a couple of fags afterwards.


Wednesday, January 23, 2013

What do I look like every day? Gorgeous, of course.

I refuse to be disabled and LOOK ill.

Fuck no, I don't give a damn about what others think of me, seeing me taking care of everyday things with my walker and my gorgeous outfits.

Thursday, January 10, 2013


Thursday already? Yesterday I came home from a week-long stay at the hospital. Again. Sigh.

On January 2nd my back pain was so severe even my strong painkillers didn't help and I had to drag my weary, achy arse to the first aid. I couldn't walk much at all, my right leg was partially paralyzed. What a joyous feeling that was, I'm sure you can imagine...

Anyway, they took me into the neurological ward and there I spent a hellishly long week, mostly bed-bound with a bad flu and high fever. Something good did, though, come out of the ordeal, but it wasn't exactly my doctor who came up with a solution to the hurt-y situation but me, mom and my husband. An injection of strong muscle relaxant to my butt had helped ease the pain when I was still in the first aid unit and we asked the nurses if they could give the injection again and they did and it helped, again.

Turned out that that particular med was also available in a pill form and those I continued to take when the pain got real bad and it was such a relief mentally as well, finding another way of easing my anguish, other than the bloody opiates I've been taking for a while now since nothing else helps

There's a problem with having terribly strong pain and being a young person with tattoos.

I'm sure you can see where I'm going with this. I'm scared stiff of getting labeled as a pill junkie who just wants stuff to get high on. That couldn't be further away from the truth. I don't even drink alcohol, forfucksakes. I've only ever tried cannabis when it comes to illegal substances and that was eons ago, too. It's only been with these awful aches and pains that I've unfortunately grown to know opiate painkillers, for example. The first time I was introduced to them was back in January 2011 when I broke my ankle badly, got a nerve damaged during a surgery and was in helluva pain because of said damage. I spent couple of weeks in hospital then and was given strong chemicals for my pain. 

One moment in particular I doubt I'll ever forget is the first time I knew no-one believed me and the heaviness of the situation with my pain. A nurse came to the room after I'd called for her, to ask for more painkillers because the last one hadn't helped one bit. She told me that she wouldn't bring me the pill, because "I don't believe you are in pain, you can't be because you just got a painkiller. You can not be in that bad of a pain". Gee, thanks dude, that's just what I needed.

The same went on and on and I felt so happy when they finally examined my neural system and found a fucked up part in a nerve in my leg. Then and there I had it in black and white, that I was indeed in very much of pain and that it was all real.

Well, back to this day, I don't have turquoise hair and a ring dangling from my septum anymore, but I do have even more tattoos now. So I must be an idiot, just complaining to get shit and get high.

Fuck you, all of you who don't believe me.

See, now there's a new thing in black and white and that's a diagnosis of Ehlers-Danlos syndrome in my mom's medical records. Q79.6 and that means that I, too, really truly have this condition and that means that I am indeed in real pain. In my records my diagnosis is still Hypermobility syndrome, but it'll change as soon as I can drag myself to see an EDS expert, the one mom saw this Monday. It's all becoming clear and official and it's both such a relief and scary a thing, because now all these different symptoms are real to the world around me, too. And this is a condition that there's no cure for and it's reality.

Anyway. What a rambling of a post this one became. Oh well. I'm back home and hopefully am able to stay out of hospitals for a good while now (I do have lots of examinations coming up, but for them to be done I don't have to stay overnight in there).

I hope I never ever have to cry and beg for something other than paracetamol for my pain, because paracetamol doesn't work for me. At all. Neither does ibuprofen. They don't cure headaches, they are of no help for my menstrual pain. And they certainly are of no use when faced with the aches having to do with EDS.

Hell, for the horrifying pain in my bones, the ones I've had for ten or so years, the ones I live with every single day,

NOTHING helps. Nothing, not even the fucking opiates.

I just might be a bit pissed off with medical staff right now. Well, with a "doctor" whose hands I was in for the last week. Merja, I hope you never ever treat another patient with such a lack of belief or respect.

Merja, you might as well sod off.

Ok, I'll stop before my head explodes.