Monthly Archives: August 2013

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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whats going on with me (other than MS)

its been a long time since i updated on whats going on with me. i think the last time i talked about school/internships i had completed my final internship and was studying for my board exams. i’m happy to report that i passed…4 months ago. since then, i’ve just been enjoying a simple life where i just work and have days off. no more studying, no more 6 days a week, no more group projects and 2 hour commutes. it has been GREAT, a much needed break from the chaos of the last few years.

i still look back on school and that final year in particular and wonder how the fuck i did it. i was stressed beyond belief. the fact that i was even able to carry on and not crack under the pressure is, in my opinion one of my biggest accomplishments. i did more than graduate, i survived the gauntlet. 

but its been 8 months now since i stepped foot onto the grounds of my internship site and 4 since i passed my boards. even though i want to rest here i have to keep moving forward. i’ve given myself a fair amount of shit for not moving on faster, but when it comes down to it, its what i needed. i needed this time to clear my head, to rest my body, and to prepare myself for my future. 

i’ve had a plan for the future that i haven’t shared much with others but i’m going to share it now: i want to travel as an OT. as luck would have it, my family has an RV i can use which makes things quite a bit easier and less costly. i’m really excited! most people that i have spoken with about travel were quite emphatic about needing at least a year of experience before setting out. well, i’ve always been good at winging it. i mean, how do you think i made it through school after all the bullshit i went though?! it wasn’t on good looks and charms, i can guarantee that! at any rate, my plan is to get 6 months of experience in and then head out of here. that puts me at a departure date of around march. 

i just accepted an offer for my first full time OT position. i’m a mixture of excitement, relief, and fear. that’s probably pretty normal though! i’m a bit anxious about working 5 days a week and doing a long commute, but i’ll just have to see how things go. i finally (mostly) feel like i have energy again which is something i have really struggled with. its hard for me to think that i will lose that. i don’t just want to save all of my energy for a job. i want to live life! 

so there you have it, i turned in my 2 week notice on tuesday which was bittersweet. i feel so at home at my job. even though i don’t like the actual work i love my coworkers. it’s really hard to leave but i have to move forward. i just keep thinking about all of the gorgeous places that await me out on the road and i know that i have to do this to make it happen. it’s still hard though. 

i would like to travel for about 2 years, which means i would have 8 assignments total. i am compiling a list of places that i would like to visit. so far i have:

1) montana. in particular i HAVE to spend time in glacier national park

2) new orleans

3) maine. i’ve always had a fascination with maine. it all looks pretty beautiful

4) georgia. those islands!

5) ALASKA!!! 

6) santa fe. i’m not a huge fan of the desert but i think if anywhere can change my mind its new mexico…or maybe utah.

7) florida keys

8) hawaii…anywhere!!!

after these 8 assignments are up i have 3 plans:

1) loooooooooong vacation

2) family?? 

3) stem cell transplant

but those are a topics for another (maybe 3?) post. 🙂

you’re a beautiful person and you deserve to be happy

i tentatively stepped onto the dancefloor…it’s been years. i made my first few sways to the beat…self conscious. i made a few more…it felt fluid.  and then my body got light…i was free. the dj flawlessly stitched together beats. three of us locked eyes and huddled together on a crowded dancefloor, yelling. three souls roaring– it was primal and perfect and then we floated away. i was sweaty, exhausted, out of breath. i closed my eyes and let it go. i felt the music. i felt it like a heartbeat through a lover’s chest.

later as i danced alone she grabbed my shoulders and looked at me pointedly, sincere and burdened. i leaned in and she spoke, “you’re a beautiful person and you deserve to be happy” then she hugged me tightly, this person with whom i share an uncomfortable history. in the middle of the dancefloor we made our amends. then we danced away from the moment to live another one, to string those moments together to form one perfect, healing night.

i didn’t know how much i needed this but i did. i desperately did. i drove home as the sun came up smiling and completely spent.

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