Category Archives: another day another diagnosis

my immune system is one grudgey bitch

just got back from the neuro, bad news: i have basically been in a constant state of relapse for 4 months and the MRI showed that i currently have 3 enhancing (active) brain lesions.

good news: i have options!

let’s see what’s behind treatment option door #1: gilenya. side effects include macular edema (causes permanent vision loss), liver damage, skin cancer…oh and my favorite, sudden cardiac arrest.

moving on to door #2: Tecfidera. side effects include kidney cancer and brain infection (PML).

i’m supposed to think it over and let the neuro know which of these fantastic options i will be going with. easy peasy. hooray for options!

these are mostly rare side effects, but death… man, not much can be done about that. no one thinks it will happen to them. and i guess i would be fine with these as rare side effects if the benefits were amazing. but they aren’t that great. better than copaxone and it’s oral dosing, so those are plusses. is it worth the risk, the cost, and the need for constant monitoring of my bloodcounts, eyes, and heart?

feck.

what to do, what to do…

also, i’ve just come to terms with the fact that i have a new allergy to hemp milk. seriously?! what kind of crunchy granola lesbian is allergic to hemp?? my immune system is one grudgey bitch.

 

 

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exacerbation

the neuro confirmed last wednesday that i have had an exacerbation. i came home, crawled into bed and watched netflix for the rest of the night. K tried to be supportive but i shut her and everything else out. i know it could be worse than a mostly numb left half of my body and a week’s worth of dizziness, but i am still struggling to get right with it. i am thankful its not worse, but i’m also angry, frustrated, scared, and sad. JUST when life was finally feeling good and normal i lose feeling in my left side and i’m dragging my exhausted ass through the week.

AGAIN.

it all feels scary again, and i hate it. i hate that there isn’t a damn thing i can do about it except wait it out and hope that this exacerbation didn’t take too big of a chunk of neurons out with it.

i think that’s what i resent most about this stupid disease– the impotence that comes with it.

spring break

i think today i just want to write about whatever comes to mind. for instance, my amazing, awesome support animal has a wicked case of seperation anxiety. in the days since her arrival, my partner and i have spent many hours and many dollars trying to cure her of her velcro dog affliction. we have finally made it to a whole 30 minutes of her being alone with not a single peep from her crate. which is great, but in some ways this is now the more difficult, time consuming part of this process–we have to sit on our doorstep and time her because we need to know if she is whining. i have heard that once you make it to 40 minutes in the crate alone, its smooth sailing from there. let’s hope so! otherwise she continues to be one of the most amazing dogs i have ever had the pleasure of being owned by. such a sweetheart! such a goof!

today i went to an oral surgeon for a recheck of my lichen planus. i was given the all-clear. i now know that i am allergic to crest multi-care, colgate, and arm and hammer toothpastes. shortly after learning that i had lichen planus, i also discovered that i am allergic to my deodorant (thankfully, there are effective natural versions!). it seems strange to develop so many allergies to things in a such a short amount of time. at the time that i developed the lichen planus, i had been taking copaxone¬†for three months and developed a cold (something that has not happened in 11 years!) and two new allergies. even though copaxone is not supposed to affect my immune system function in any way, i have my doubts in light of these developments. i will save my rant about the disease-modifying drugs (DMD’s) for another time…

my partner and i are supposed to be going out of town for the weekend, only in true slacker fashion we have made no reservations or firm decisions about where we are going. ha! if we do make it, it will be so nice to get out of town for a bit. if we don’t i will still enjoy relaxing at home with her.

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another day, another diagnosis

today i was diagnosed with lichen planus. i have it under my tongue so it is thankfully not visible. the doc told me to switch toothpastes because i am allergic to what i am using now. this is the third toothpaste i have been allergic to. who is allergic to toothpaste?!

i guess they weren’t kidding when they said one auto immune disease predisposes you to having another. :/

stop the ride! i want off!!

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