MS and seizures

My mom has to cancel her appointment with the cardiologist to drive me to Schrodinger’s neurology appointment today (is she gonna tell me to come in today or not? haha who knows!) Either way I had another big seizure last night. This one changed my perception of color for a good several hours and I’m still having trouble with sound. Also still can’t stop shaking. It’s been three nights in a row and I am exhausted.

I really need to know if anyone else with multiple sclerosis has ever experienced this. I’ve had it since 2009 and I’ve had a seizure here or there but never like this- never this severe and never this frequently. Is this typical of a relapse maybe? Have any of you ever had a relapse cause frequent night seizures that kept them from sleeping?

Cracked’s description of multiple sclerosis is beautiful

Although science is still not sure of what causes multiple sclerosis, we know that for some reason the immune system begins to destroy the protective layer around the body’s neurons, which sucks because neurons are the metaphorical heart of the nervous system. It’s kind of like shooting through your own shields in Space Invaders. Only instead of dropping your head in shame and running out of the arcade because it’s 1982 and you’re in an arcade for some reason, you end up with scars that keep your brain from communicating with the rest of the nervous system.

 

It’s always just “one more day”

One more day left of infusions, then I get to stop feeling awful, right? Sure. But then “one more day” turns into “two months later” and it happens all over again. This is the worst summer I have had in four years, and I just want it to be over. 

Can’t wait to be in Seattle next week. Too much stress in my house.

I am the worst sick person ever

I got a relapse in Italy, and I’m neglecting calling my neurologist because I don’t want to go on Prednisone and get a puffy face because I have a convention coming up in three weeks and I’m cosplaying for it. 

On one hand- health. On the other hand- a once in a lifetime picture with some of my favorite celebrities that I will have a fat puffy face for. 

Fuck. I hate choosing between my health and my vanity, haha. Time to pick up the phone :(

Oh, you have multiple sclerosis?

"I can relate, I have back problems too."

I swear to GOD that is one of my biggest peeves. I know it shouldn’t bother me as much as it does, but I really hate when people confuse MS for scoliosis then go off about how they have back pain or something. It happens so often. 

Surgery went really well!

Pretty achy but no worse than I expected to be. Probably just be kind of stiff for a couple days, and it’s gonna leave a big ugly bruise and a big ugly scar, but once that’s gone I get to get a new tattoo! My doctor was like “if it turns into a keloid just come back and I’ll take care of it for you” and I was like “well actually I was going to cover the scars with a tattoo” and he was just like “you don’t have to do that! I’ll make sure it’s fine.” I don’t think he understood that I WANTED a tattoo there but alright. I think it’ll be neat. Kinda symbolic. 

AND SPEAKING OF SYMBOLIC! They let me keep my port, and I want to do something cool with it but I’m not really sure what. Something artistic. Maybe turn it into a weird cyborg creature statue or something. What do you guys think?

Hey Leila, how are you feeling today?

image

Oh okay. I’ll leave you to it then…

Infusion day two. I forgot how bad these were for more than one day in a row, especially on high doses. By the end of the treatment I was having such a hard time being nice to people and I’m so tired and so achy and my right leg still has no strength in it so I can hardly walk. Plus I’m not sleeping, and I know tonight will be worse.

But at least the setup is comfortable. I get to lean back in the chair with a pillow and blanket and stare out the window and listen to music, and I was the only one in the whole back room today. That was kind of nice.

(also that bird in the background of the second picture looks like a flying dick…)

Wait I…help please?

I literally forgot how to react when I’m having a relapse. It’s been a long time since I’ve had one, or at least since I’ve had a serious one. Like Friday night I lost the feeling in the right half of my face, and Saturday I called the on call neurologist who told me to call back today since my regular neurologist was on call, so I did, and she told me she would see me on Tuesday.

BUT now the lack of feeling has slowly moved down to my right arm and leg, and my arm and leg are really weak (I can hardly walk), and I swear it feels like my right lung isn’t inflating when I breathe.

Should I go to the hospital? This is scary, I am scared. I am trying not to cry right now. Or should I just wait until Tuesday to see my neurologist? 

Oh boy, I love summer (not)

So apparently Washington state decided to be bipolar as butt this year and turn the weather from a mild 60-70 degrees to a blistering 90 degrees in the first week of May. Normally this time of year, it’s only in the mid 60’s and still raining. Needless to say, my body is having a HELL of a time adjusting. I’ve got some serious, serious heat intolerance issues. Last night, after we turned the air conditioning off, the house got to around 78 degrees (it was after 7pm, mind you), and I got a case of heat exhaustion. I had to go lie down for the rest of the night.

It looks like things are only going to get worse, and I’m really upset because I have a three week trip to Italy planned at the end of July. I’m scared. I’m really scared. Going to Italy is possibly a once in a lifetime thing, and I don’t want to miss my chance just because my MS is messing with me. Like I don’t know if I’m just having a particularly bad year or if my body is freaking out because I didn’t give it time to adjust, but I don’t know what to do. I’ve been diagnosed for four years but I don’t remember it being this bad in the summer.

I’m starting Tecfidera soon, but I don’t know if that’s going to help my heat issues at all. I’ve only ever been on Copaxone (injections…you don’t know how excited I am to be starting a pill) and monthly Prednisone infusions so I don’t know how effective the pills are in treating symptoms. But you know, just in case, can you guys maybe give me some tips?

How do you deal with heat intolerance in the summer?