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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waves to wine update

it’s been awhile since i have talked about the ride and at the prompting of a reader, i figured i should get around to updating. earlier this month our team captain was in a hit and run accident while riding his motorcycle. he was in the hospital for about a week and was fortunate enough to walk away mostly ok…mostly being relative of course. he broke his back and his collar bone, and at this point almost a month after the accident is finally realizing that riding in waves to wine may not be an option this year. he is really upset about it i think more than he lets on.

the rest of us spent lots of time with him in the hospital advocating for him (“excuse me nurse, why is my friend in a room with a patient who has contact isolation precautions?!?!”), making sure he had plenty of food to eat, asking plenty of questions on his behalf, and making sure he got home and settled in alright. as a result, our riding suffered a little. BUT we are back on track now.

K and i are still riding and i am still planning on the century ride as opposed to the 75 mile ride. we are also still seeking donations from kind souls on the interwebs… if you  are reading this i’m looking at you 🙂 donate to our team! its tax deductible!!

ok, enough of that. we did get our jersey design finalized and the jersey company sent out sizing kits. check out this picture of me. don’t i look legit in the kit?! hehe.Imageit’s not our actual jersey, ours will look different…this ride is getting real. i would be lying if i said that it doesn’t make me a little nervous. i’m mostly worried about the heat. the actual misery of the ride i think i can handle. i hope! our plan is to ride the 100 on saturday then do some wine touring and massages on sunday, then follow all of that up with a trip to some hot springs monday. i think it sounds amazing!!

this weekend, part of our team might be hitting up paradise loop while i slave away at work. but then i will be heading out solo for a long ride monday to keep the momentum going. we went hiking in big sur this past weekend. 10 miles uphill. totally not joking. then 10 miles out the next day. that’s a story for another blog though. i’ll tell you about our dramatic run-in with a rattlesnake and how we lived to tell about it (no pictures, apparently rattlesnakes don’t appreciate iphone-wielding paparazzi on the trail).

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2 lezzies one house

today i opened up facebook and found that another couple i know are getting married now that DOMA has been struck down and it’s legal. stating the obvious here: i’m thrilled for them. they are a fantastic couple who are really happy together. stating the not-so-obvious: any time i see a post like this, i can’t help but compare myself and my life to others and find myself feeling sad and lonely and restless for change. i really need to stop looking at people’s pictures… either that or i need to start friending only people who are less successful in life than i am because seeing all of the happy people surrounded by large groups of smiling, jumping friends and scenic pictures in my news feed just makes me wish that i had  A) money; B) friends; and C) energy to do things with my money and my friends.

i honestly don’t know how people work all day then do a happy hour or the gym, clean the house, make dinner, watch a movie with friends, take the dog for a walk, go to bed late, then get up and do it all again the next day. but judging by my newsfeed, my friends never sleep, always have a drink in their hands, and are constantly surrounded by 20 of their closest friends. and they also have the energy and time to invest into their perfect relationships too.

i was sitting there feeling like a total lame duck until a friend posted this into my news feed. now i feel a little bit better but confused as to what to do about it, since the problem AND the solution both originated in the same place– facebook.

oh well, i’ll just talk about what i’ve been up to. namely a gazillion shoestring DIY projects. i’m seriously considering completely changing this blog and calling it something like 2 crafty lesbians. or, as K suggested 2 lezzies, one house. because all i really do anymore is DIY crap around the house. it makes me happy, what can i say?

on our list for the next couple of weeks is a wooden pallet deck and a duvet cover. the planter box is ongoing, so i will be posting some cool pics of everything growing soon. we harvested our first bit of greens last weekend. so cool!!  i have some super exciting news about future plans i will be updating on when i get a few things worked out. and no, a baby is NOT part of the plan (although i guess that would be a pretty amazing DIY project…hmmmm)!

the $6.00 date smoothie

it’s called the $6.00 date smoothie because that’s how much we paid for it at a local cafe. it was so amazingly delicious that we got out the vitamix when we got home and ran some delicious experiments to come up with our very own date smoothie. just to be clear, this is NOT a healthy smoothie. but it tastes AMAZING!!! and its gluten and dairy free. it’s too good not to share, so enjoy 🙂

photo-21

5 dates, pitted

1 Tbs almond butter 

Pinch of salt if almond butter is unsalted

3/4 tsp honey 

1/2 tsp vanilla extract

1 can coconut milk (13ish ounces)

1/2 banana 

2 C. ice 

our planter box is FINALLY done!!!

this was what it looked like a few months ago:

and this is what it looks like now:

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top row starting on the left going across: 3 squares carrots, 1 square swiss chard
2nd row: arugula all squares
3rd row: dino kale all squares
4th row: 2 squares spinach, 2 squares blue kale
bottom row: 1 square collard greens, 3 squares blue kale

our box started out much bigger as you can see in the first picture, but then after constructing it to be the larger size we realized there was NO WAY we were going to have enough dirt to fill the box. it could have been enough if the dirt in our yard didn’t look like this:

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NOTHING will grow in that!

and yes, in case you are wondering, “dirt” full of rusted and sharp things such as this DOES violate habitability codes. but our thankless landlord was less concerned about our safety and quality of life and more concerned about us using water (he pays for it). he removed the hose and sent us a letter stating that we agreed to plant native drought tolerant plants and water using a bucket filled from our kitchen sink…which is up a flight of stairs. we never agreed to any of that. so there was a delay getting our box set up and planted because we had to wade through some tenant-landlord negotiation muck before it could happen.

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we are really happy with the end result though. and we can’t wait to harvest some of these greens! having MS was definitely the impetus to eating better food, and eating better led me to learning more about what i am eating, and this in turn led me to making a planter box to grow veggies. now we have a yard that looks less like a construction site dump overgrown with weeds and more like a place i wanna spend my time. the neighbors are taking advantage of the hammock i hung which makes me really happy 🙂

none of this would have happened if i didn’t have MS. being diagnosed was and still is one of the most influential events of my life. but it’s not always a bad thing.

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family

sigh…

here goes.

i have been secretly reading blogs of people living with various chronic illnesses and cancers for probably 10 years now. i never talk about my late-night slice of american pie with anyone, but i have thought long and hard about why i come back to read their stories. aside from the obvious courageous and inspirational messages and the opportunity to support others these sites offer, i think i come back because i have an opportunity to witness family support and love. i get to live vicariously and take mental notes on how to be a “normal” person with a happy, loving family. it’s a little bit of fake it till you make it, i suppose. with a dash of green envy thrown in.

most of my 20’s were a series of arguments with my mother over my brothers drug addiction. she believed that i was making it up to hurt them both.she was at times physically abusive and growing up was neglectful and disinterested in us. even now, i can hear the resentment boiling just under the surface. the dichotomy of parenthood. i think she loves us as much as any other mother but we are her scapegoats for unrealized dreams.

whatever the case, parenting by avoidance, denial, and guilt did not result in happy, well-adjusted adults. my sister has chronic pain, depression (with suicide attempts) and no insurance. she can’t work and filing for disability is difficult for someone her age, so she exists in limbo. my brother is riding the revolving door of the prison system and i think he has given up on life. i suppose in comparison i come up looking like roses.

which makes me desperately sad. the hurt runs so deep, i can’t even describe it. i want so badly for everyone to do better and to rise above their circumstances. it is heartbreaking to watch, but i don’t know how to help them without jeopardizing things for myself. if there was one thing i truly wish for in my life it would be for my family to be healed from their drug addictions, chronic pain, mental illness, and traumatic experiences, so that i can heal too.

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.

hawk hill

yesterday, we rode 31.3 miles up hawk hill. it was hard but not nearly as hard as i thought it would be. the ride was beautiful and fun and i am so proud of K and i for actually going through with it! this was our first ride on our own and we totally rocked it.

hawk hill map

the map here only shows the route from chrissy field and as pictured is about 20 miles, but we started from the center of SF and rode an additional 5 miles each way on the route.

hawk hill

the view was absolutely gorgeous and we could not have picked a better day to go. the mountain in the middle of this shot has a road carved out of it…this is the road that we took from the bridge. we basically rode from below sea level to a couple thousand feet of elevation. not too shabby for a lacey-brained weakling!

guns hawk hill

worst two things about the ride: 1) tourists on the bridge… tandem bikes UGH!!!; 2) the wind.

best two things about the ride: 1) the meal we ate afterwards. glorious, delectable carbs and salt! food always tastes amazing after a ride; 2) the moment in the above picture. we made it! holy shit, we actually made it!!! also, my arms look pretty buff which is nice. even if it is just the shadows. i’ll take it!