Update, March 26
My Porphobilinogen test came back with a value of 1.5mg on a random sample, between attacks. I can’t confirm it for definite until my next neurogeneticist appointment, but that is, in all likeliness, an abnormal result. If so, it’s likely that what is wrong with me is Acute Intermittent Porphyria, one of the things I really didn’t want. That’s a lie. It’s one of...
Here we have a video from august of last year showing my videofluoroscopic swallowing study that demonstrates some of the problems I have with eating. It’s quite hard to tell what’s going on, but you can kind of make things out. There are also other interesting factors, like you can see my radiation exposure and such in the bottom right. Cool, isn’t it?
Living with a Debilitating, Fatal Disease
Here, my 2012 list of expenditures. These are just the deductibles, doesn’t count the cost of anything not covered, the suppliments, cost of getting around, so many incidental expenditures… This is JUST medical! And as I get sicker, the cost of these things will no doubt rise. By the time I die, millions will have been spent on me. Yes, that’s $193,663.92 in medical billing...
imagineyuorotp: Imagine your ATP. During cell respiration, phosphate A is separated from phosphate B and the rest of the molecule, and is later paired with another set of phosphates in different ATP molecule.
You rolled a 1. Move forward three spaces towards...
Today is August 5th, 2012. It’s a Sunday. I’m 28 years old. And I think I just had a relapse. After a few days of extreme physical stress, consisting of a video-fluoroscopic swallowing study, 4km worth of walking, vomiting and such, we arrived at Saturday. I woke up, feeling rough but tolerable. And then I noticed I was getting a little twitchy. It got worse around 5pm. 6pm, I had to...
X-Rays or Sex-Rays?!
I had a video fluoroscopic swallow study today, to find out why I’m having… food issues, with the eating thereof. Turns out my soft palate isn’t covering up my nasal cavity when I swallow correctly. So now I get to see a new specialist who can help me with examining that and maybe strengthen that, so I don’t end up with food up inside my nasal cavity that I have to try and...
Broken Again (Tumblr)
panictherat: I am. Lost the use of my right arm, no strength, mostly numb, fingers wonky… for 48 hours almost now. Think I’m gonna hit up the ER this morning. Fuckfuckfuck :/ Why does all this shit happen to me :( Seriously, Why? :(
It seems that the seizures were being caused by my new antidepressant, desvenlafaxine and I have stopped taking it… and the seizures have stopped. I’ll have to try another medication. :x Right now, I’m having a little vacation, out on Long Island, visiting a friend called Kayin. It’s fun and much needed, especially after all this stress. *aaah* Relaxing is good, right?
The Day The Seizures Started
A few years ago, I started getting mild partial seizures (either epileptic or non-epileptic). Then, six months ago, I had a myoclonic seizure. Jerking of limbs, but I was awake, aware and such. I’ve only had a few since then. And then today, I had a full-blown generalized seizure. I was just sitting around, feeling pretty good, when I noticed my body was jerking more than normal. Then I...
Out of Hospital, Lots of New Info!
Well hey there tumblr, been a while, hasn’t it! Here’s what happened, that I forgot to mention: I saw a neuropsychiatrist and they suggested I go in for a Video EEG, to monitor my brain and find out if I was having any actual seizures, what type, where in the brain they happened, the exact physical nature, etcetera. It was supposed to be for 3 days, but ended up being an entire week. ...
Since I started on the supplements I mentioned in my last tumble, things have been getting slightly better. I can’t say that I have been in any less pain, or less tired, or weak (at least, not yet) BUT My appetite and thirst have both improved significantly and I’ve managed not just to halt my steady weight loss, but I’ve put on a couple of pounds! This makes me very happy~ I...
So I’m trying these new supplements, supposed to be good for people with mitochondrial disease, replaces or adds to what the body isn’t making enough of. The CoQ10 and Biotin were fine, no bad tastes or smells, went down easy. One was a standard stinky B-vitamins pill. You all know what those are like I am sure. Wish I knew which one did that :O And then the final one, for something...
Energy levels are good today and pain is low. I’m shaking like I’m a living gigantic vibrator or something but hey, that doesn’t actually HURT. I think today might be okay! *positive thinking!*
I am crying
panictherat: Because I don’t like today. Finally, my legs aren’t in agony as they have been since the beginning of the week. It’s a nice day outside. And I have no energy. I want to go for a walk, but I’m too tired. I hate this. I hate this all. I hate these stupid problems, my stupid fucked up health. Is a walk in the sunshine SO FUCKING MUCH TO ASK FOR, WORLD? IS IT REALLY?
futuretension asked what my day-to-day life was like, so I’m gonna share it here. An average day starts off with me getting anywhere from 8 to 10 hours sleep. More on a bad day. Then, comes the process of actually getting up, which is more difficulty than it sounds. Moving my legs, physically supporting my weight, especially after the fact I wouldn’t’ve eaten in the last 8+...
Today is a good day \o/
Xanax to relax me. Ambien to knock me out. Sweet relief shall shortly come! Oh YAIS!
Since my appointment yesterday, I still haven’t slept. The reason for that, is simple. I had to do maybe two miles worth of walking? That was enough to ruin my legs. I’d call the pain exquisite, but that implies beauty, so I’ll call it obscene. It hurts too much to sleep, to walk, to stay still, to do anything. And, as if taunting me, my ambien, which would nicely knock me...
Hi and Hello! Welcome to my FIRST POST!
I guess this is an introductory post, wherein I’ll detail who I am and what’s happened in the lead up ‘til now. I’m Arcturus Kirwin, I live in Brooklyn and I’m 28. I suffer from what is believed to be by doctors far smarter than I (or at least more knowledgable), mitochondrial disease. It makes me tired and confused. Forgetful, clumsy and a complete spaz. And a lot...