Or How I Learned To Start Worrying And Abhor This Debilitating Disease.
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 the things I would rather my legs fell off than have.
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 for 2012. Almost two hundred thousand dollars.
That’s about $16,150 a month, for me to live in some state of happiness. Not HAPPY per se, but happy enough that medications can do the rest and I don’t try and off myself (again).
And if anyone wonders why I don’t seem to go to cons, or buy all these things… this is why :>
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.
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 go lay down.
Massive muscle spasms started soon after that. Constant jerking of my legs and twisting of my back. Tightening of the muscles over and over. High-frequency muscle vibrations. And excruciating pain. After TWO HOURS it started to die down, but as it did, it spread.
It’s now 4:30am that night, almost 12 hours later and I’m still spasming and jerking around, my neck twisting, back pulling, legs and arms tightening and clenching. My entire body is tired and I ache. I’m running a mild fever and I barely have an appetite.
I’m having bouts of confusion, becoming unsure of what I was supposed to be doing. Trouble speaking and writing because of difficulty finding words, phrases. Sometimes, other words would pop up instead, or I’d get stuck in a loop, like going to type a word and instead typing “catcatcatcatcat”. More trouble with my memory, with remembering details about what I was doing, or what I was about to do. Trouble remembering internet addresses, places I’d visit, search terms. Things I do all the time.
Depersonalization, which is troublesome to me and was quite bad this time, to the point where I was having trouble talking about how I was feeling, because it “wasn’t me” having the feelings, it was the other me. It wasn’t a schizophrenia or multiple personality type thing, it just felt like I had had to become someone else to cope.
Derealization happened too at the same time, nothing seemed quite real, even though I was experiencing severe pain at the time and I knew THAT was real. I wasn’t unable to articulate what was going on to my partner, as I had trouble with concentrating on what was actually going on around me. I would just get lost in my head, which sometimes felt more real.
I guess the last thing is just a coping mechanism for the severe pain I am experiencing right now. People always ask about pain, say “How is it, 1 to 10, 10 being the worst you’ve ever had.”. I’m going to have to redefine my scale, again. Time was, I couldn’t even conceive of pain like this.
Koekje brushed his fingers up against my arm and I wanted to scream. I flinched away, then had to bring his hand back. I need the touch more than the pain can stop it. It hurts, it’s excruciating, I’m tired and confused and my head feels full of marbles and fog. But just his hand on my arm makes it all copable with. He makes me keep going :)
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 sneeze out so much.
It makes eating stuff like a rice a pain, I tell ya.
I also got hit with a fuckton of x-rays, many of them laterally, so I’m gonna have to get some bloodwork done I think, as my thyroid was already ‘sluggish’ and I bet a dose of radiation didn’t help :|
Ah well, every coin has two sides, right?
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?
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 thought, “I feel fu-” because well, I felt funny. And then I blacked out.
Ten minutes later, I woke up, slumped over my desk, a little to one side, drooling. I had a major seizure. :x
The next few hours, I could barely move, or think, or write. I could speak okay, but listening was tough. I tried talking to friends, but I wrote things like:
“this is rextraorddilyhrad staying j”
“Meredith will tsy in Jotun’s lap in the meantime. It, her playr that is, feelis partc feeling bad after a long ad maybe still going on sezur”
All through the evening I felt slightly more and more better, until about an hour ago, when I had another seizure, but a much milder one. Maou was here too, so I could have him hold me until it was over. That helped a lot.
It’s been 14 hours since this all started and I’m more worried now than ever. This is a new and worrisome development. It may have only happened because of insomnia leading to sleep deprivation, but the fact it’s happened at all (and that the postictal period has lasted this long…)
Well, it worries me. I don’t like seizures at all. I don’t even like the tiny ones that I had been having already. :(
I hope I get some GOOD news with something, soon. :< :< :<
I feel so fuckin’ depressed and this wholy thing has scared me to bits. It is scary, right?
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.
It was boring and frustrating, because I was hooked into a wall-mounted processing unit and I had a 15ft cable that just about reached the bathroom and that was my limit of movement. Very dull. And I didn’t even have any recorded seizures.
Copy-pasted from my inkbunny journal is what happened during it and what’s going to happen in the near future. Enjoy the read:
I got home this afternoon~
Over the next two weeks I should get compiled reports on my bloodwork in, plus a report on my EEG and the results of my urinalysis.
My blood showed low levels of an enzyme called Ceruloplasmin. It carries copper in the blood. Too little can interfere with your copper levels and lead to it being deposited in odd places, where it can do damage.
It can permanently damage the brain, cause liver scarring (cirrhosis), calcium deposition in the kidneys, iron deposition in many organs (which causes damage on its own, pesky iron) and other things…
BUT it can be treated more effectively with chelation agents.
So it’s also a ray of hope?
Oh, and I have low vitamin B12 too, so I have to take suppliments of that~
I also have to see a neurogeneticist, make followups with my neuropsychiatrist and epileptologist, plus appointments with my pain management specialist, neurologist and primary care physician.
It’s still all go here @_@
…but I’ll have time for relaxing, playing Diablo 3 and stuff like that~ Yay.
I hope I’ll have more information soon. And data. Who wants to see data?
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)
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 hope I can get myself to a slightly nicer weight and then maintain myself at that, which I see as being feasible if I stay on the supplements.
I’m feeling positive >:3c
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 called Carnitine. I grabbed the works-slightly-better version, Acetyl-L-Carnitine (w/ Alpha Lipoic Acid) and like, it’s the size of a funsize candy bar, almost.
Okay, that’s overstating it, but it is ginormous and it’s one of those crappy capsules, so if course it wants to stick to the inside of your mouth. Eugh, jesus christ D:
Why do companies even DO that?
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!*
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+ hours is hard.
Then, I get up. Bathroom stuff goes on, the usual there. Then, grab some soda, a breakfast of some kind and I settle at my desk. Put a little food in my stomach, then start taking all my medications. That’s eight prescription meds each day, plus things like multivitamins.
Then I can settle down for a good part of the day, but it’s a constant battle against the distractions of pain, cramping (both of body and intestines), having to change position frequently. I try and snack throughout the day and stay hydrated, that helps.
Later in the day comes things like dinner, feeding cat, putting away groceries, usual stuff. I can’t always do them though, luckily I have a partner who helps a lot. He lovely. :)
Then, I’ll go to bed, after taking my sleeping pills, so that I can actually sleep because laying down isn’t often too comfortable. :x
On bad days, of which there are more of than ‘good’ days, I can be severely lethargic, my memory and such so bad that I forget to eat, which makes things worse… there have been times where I have had to wait to be able to even stand up from my chair. And, though it’s gross, it upsets my digestion and bowels a lot too.
There’s also the heavily decreased sex drive. Well, not sex drive, but desire to have actual sex. I still love kissing and fondling, but sex is just painful now. I still… ahem, ‘release the tension’ from time to time, but even THAT can be impossible for periods of upto a week, as I’m too stiff and sore in the upper legs and hips. And even if I can, the muscular contractions from a climax are horrible.
But this is mostly copable with, really. Mentally, I mean. I am still coming to terms of what I can do without overtaxing my body. Going to the supermarket, the doctor, anything like that usually requires a lot of walking and can cause anything from A: extreme pain, loss of muscle tone, swelling to B: The inability of my legs to support weight, numbness, rendering me incapable of walking.
I got stuck in a subway station for 15 minutes once because of that :x
Hope this info is useful :3?