Monthly Archives: August 2014

new medication

I was just scanned last month and once again more lesions were found and one was enhancing. I don’t get super worked up over lesions or enhancement because I feel like there is plenty of evidence to suggest that 1) RRMS doesn’t mean disease activity stops when we aren’t in relapse; and 2)  MRI’s do not offer any real prediction or correlation to a person’s clinical picture. But my neuro does and she had been urging me for some time to switch meds.

After lots of research, talking with my neuro, whining, and excuse-making, I opted for Tecfidera and last night was my first dose.

i was so not prepared.

how come they never mentioned that i would first be awakened feeling as though my skin was burning off from the inside out, and that later, after worrying that something was seriously wrong and contemplating getting out of bed to check my skin for burns this feeling would subside. I would think the worst had passed and try to get some sleep. except for some reason my legs felt like they were being poked in random places with a pine needle. the itching, the horrible, ungodly, make-your-legs-involuntarily-twitch itching. i was so woefully unprepared for that at 3 am.

after benadryl and a near-sleepless night i have now just swallowed my second dose of Tecfidera. along with more benadryl preemptively. really hoping that is the key for control the itching. also, i would like to point out to any pharmacists and docs out there reading that feeling like my skin is searing off is not what i would describe as “flushing.” flushing sounds cute, like a normal reaction. this was not cute. feeling like your arms are about to turn into pork rinds as you lay there trying to sleep is not cute. it hurts, and burns, and worries the ever-loving shit out of you. just FYI…mmk? 🙂

anywho, here’s to better control of MS.

 

 

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new years

what a strange time in my life.

the last 6 weeks have left me feeling a bit lost. but as a person who is well-seasoned in shitty interpersonal situations with family, i’m moving on. i still have not talked to my mom. i’m still really conflicted and upset about it but i’m doing my best to move forward. it’s not that i want to shut her out because i’m pouting and angry, i really want her in my life but she can’t give me what i need. so taking a step back for now is what feels right.

new years didn’t bring with it a litany of self-help and feverish exercise regimens. it was probably the most quiet and understated ring-in of a new year ever for me. in case you didn’t know, before my body started falling apart i was a big-time night owl party girl. i have far too many embarrassing pictures from back in the day–burning man, raves, camp-outs…thankfully my friends had the good sense to not post them on public forums. anywho, it’s really for the best that i wasn’t out partying it up for new years. let’s face it, i’m pushing my mid 30’s and no one likes a washed up party girl. not that i was ever the stiletto and mini skirt wearing type, and i still look like i’m a baby-faced college freshman (yes, i get carded). but still.

so this year, K and i watched the sun set over the pacific ocean on new years day. it certainly helps that my locale is arguably one of the most beautiful places in california.

photo-40

at any rate, i am late to the game with the resolutions but there are some things that i really hope to accomplish for myself this year.

for one, i want some type of resolution to this situation with my family. i’m not sure how to get it just yet, but i want to feel ok about my relationship with them. no more guilt and anger and hurt and all of that nasty negative stuff.

second, i want to travel. that means a whole lot of things need to happen. namely, the goal is not to just become a travel OT. i want to do one better–i want to travel as an OT in a bus. i’ve put a lot of thought into this and it makes sense for us for a number of reasons:

1. its a mobile living space, which means i get to keep the living stipend the contract company gives me.

2. we don’t have to worry about finding pit-bull friendly housing as we move around the country

3. we have bills. lots of them. with almost no overhead and really good earnings we can pay off debt.

4. it’s safer than an RV, it can easily tow a car, and we can modify it any way we would like to suit our needs. our plan is to travel for 2 years, so having a small living space that works for us is important.

these folks have a really gorgeous bus that will hopefully offer us some inspiration as we plan ours. i’m scared out of my mind for sure, but there is a little voice in my head that keeps telling me i can do this, that its ok to be scared and feel overwhelmed, i will find a way. so we are in the market for a school bus, preferably one that has already been partially converted.

third, i need to get more serious about my diet and my medications. currently i follow the OMS diet and i haven’t kept great tabs on my saturated fat intake, which is a key part of the diet. so i’m thinking it’s time to get an app of some sort that i can input what i eat and track my saturated fats and proteins.

i have really struggled with the medications in particular. i don’t want to give myself shots. i don’t want to jump through hoops to get my prescription each month. i don’t want to think about pharmaceutical companies ripping off sick people like me for no reason other than they can. but i have to face it. i can’t have another 5 month relapse. this one was mild but the next one may not be.

the first 10 days of the new year have been fairly humble.