Pin Cushion Blues

So, I have now been on Tec(fidera) for nearly 3 months. I’m not sure why, but it seems that every blood draw brings up an ever changing array of out of range labs. It started with my creatinine and my ANC. The creatinine lab was serendipitously requested in error instead of a CBC, and came back high, like stage III kidney disease high. And my ANC came back low. Arguably the most important lab I could have drawn for baseline and it’s low and out of range. I’m not sure what to think. My body is wacky for sure.

After a slight freak out by both my primary doc and my neuro, I was instructed to move forward with beginning Tec and have my labs redrawn. These labs showed a huge increase in my ANC and improvement in my creatinine to just within normal range. Whew! My neuro, who is incredibly cautious, which I appreciate, requested that I have my labs drawn again in a month to be sure that all of my numbers were good after such a rocky start. So I did.

And just for fun, my liver numbers then decided to skyrocket. One count was in the hundreds. After more emails back and forth with the neuro and PCP, I waited 2 weeks and had MORE labs drawn. Which showed improved liver numbers, although still not completely in range. My neuro requested that I wait another month and redraw…Which brings me to my most recent labs.

Now my platelets are low.

WHAT THE FLIPPITY FUCK.

At least everything else is in range, I guess?

Aside from the never-ending lab draws, Tec has been going pretty well. I feel much more energetic than I did before which is really great. The Tec is much easier to transport for traveling so I’m also happy about that. I am more compliant with my medication so that means the treatment can actually do it’s job. Overall, going well. I occasionally still get mild flushing. This seems to happen if I’m feeling stressed or rushed and have just taken a shower. It’s happened twice when K and I are heading somewhere and we are running late. I also occasionally get intestinal upset still. It’s nothing like the horrors that I read online before starting Tec though.

Oh, and one final thing I will put here in case others search and land on this blog because I wrote about Tecfidera. Tecfidera makes my nose run. **Warning: I am about to describe my snot, so if you don’t want to read about that stop reading now :P So, I get this runny nose a few hours after I take Tec. Its really thin, like water and my mouth saliva also seems to thin out. I also feel my sinuses fill up with fluid to the point that I have a hard time keeping the pressure out of my ears. When it gets really bad the only thing that will clear the pressure is to plug my nose and close my mouth, then breathe out as hard as I can, puffing out my cheeks like a diver would do to clear the pressure from their ears. This lasts for a couple of hours and then goes away. I only get it a few hours after a dose of Tec and I thought I was going crazy at first. Then I googled and immediately returned searches of people describing exactly what I was experiencing. I let my neuro know and she believes me. I think. Anywho, if this is happening to you, you are not alone.

Labs are to be redrawn in February. Hopefully everything will have stabilized by then.

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. case in point: me.

I have at least 18 lesions in my brain and 6 in my spinal cord. to look at me you would never know it. my EDSS is 1.5-2 and is all sensory related.Even still, it was quite clear that I was not getting any real benefit from the copaxone, partly because it was incredibly difficult for me to stay compliant.

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.

 

 

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.

a month

folks, this is what rock bottom looks like. truly. even being diagnosed wasn’t as low as this. i know it can only get better, at least that’s what they say, whoever they are. at any rate, i’m still trying to find the words to tell my mother how painful it is to be blown off and rejected by her over and over again. i’m also still trying to find a way to come to terms with the fact that my my family will never act as a family. my heart knows that’s the truth, but it wishes it different anyways. even though i am depressed and hurt and full of impotent pain there is a voice in my head telling me to ride this out. and i’m trying hard to listen.

i vacillate between feeling overwhelmed and incredulous at how bad things truly are. i wonder how things got this way. as a child, i never realized how bad it was until i was older– i thought everyone’s family was like mine. sometimes i think my family can still be like everyone elses. and sometimes i just hurt so deeply i think i might split in two.

family. again.

i’ve been working on response to my mother since i told her a couple of weeks ago that i would make other plans for thanksgiving. but how do you tell your mother that you aren’t giving her the silent treatment, that instead you are trialing cutting her completely out of your life? i keep hearing a refrain from the gawler retreat in my head, the one about putting all of the people in your life that are your critics, your naysayers, your negative nancies onto a figurative bus and driving it off a figurative cliff. but how does one do that to thier family without feeling like you are betraying them. like you are breaking a promise? and so i have not put out any sort of response.

the silence so far feels right– its a relief to not have my hopes dashed over and over again. to not be rejected anymore. to not yearn for a relationship i will never have. but that doesn’t mean it isn’t painful. when i was in school i thought that once i got my license and a good job i could help my family. i could pay for the house repairs that my mom needs, hire her a dog walker, take her on trips. i could use my skills to facilitate family discussions to address things like my brother’s drug addiction and my sister’s chronic pain and psych issues. i could help repair some of our broken past so that we could be a family again.

i sit here this holiday weekend thinking to myself “there is still time, i can call her and make plans to see her for the holiday.” but the truth is, i would just be caving in to my guilt, my sadness, my aching desire to have a cohesive loving family. and if i did that it wouldn’t change anything. i would still be disappointed every time she didn’t call when she promised she would, every time she flaked out of milestones a mother should want to share with her daughter, every time it was clear that avoiding me was easier than being honest with me.

i can’t make sense of it and maybe that’s the part that has me turning in circles. i am her only child who is somewhat successful. i am her only child who is gainfully employed. yet, it seems that the better i do the more she rejects me. i have questioned myself over and over in my head when i am quiet. what else can i do? am i sure that there is nothing left? should i call her, she did get sunday off (out of guilt and motivated only by my declaration that i was done waiting for her to call me back and would be making other plans)? am i sure that i am not just angry and giving her the silent treatment?

i am without a doubt angry but more than that i’m at a loss. what is left of this relationship? a long time ago i learned that the only way i could forge a relationship was to let go of expectations of what a mother is “supposed” to be and face the reality of what is. but she does not want or is not capable of what i want.

that’s what this thanksgiving helped me realize. i should be thankful, but i’m devastated instead.

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no words

i spoke awhile ago in this post about the Gawler retreat in Australia. my friend Rel, who was diagnosed with stage IV (terminal) colon cancer went there twice for retreats and always spoke so highly of it. she passed away in march. she was such ball of light, always happy, always caring. just a beautiful person inside and out. a few weeks before she passed, she urged me to go to one of these retreats. she even began fundraising for me, my friend who was dying of cancer. she said she wanted to know that i was going to be alright. every time i think of that it brings tears to my eyes. i doubt i am even getting across a fraction of who she was and how much her life and that one simple gesture impacted me. we have spent the year honoring her and doing what we can to carry on the things that were important to her. my friend T who was very close with Rel decided to pick up where she left off with the fundraising to get me to Gawler. i have no words for this, just endless gratitude and love for my friends.

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Waves to Wine 2013

Forecast: rain

Outlook: hopeful

post-ride. i love how it stopped raining after we were done riding

post-ride. i love how it stopped raining after we were done riding

it rained the ENTIRE ride. it was freezing and the toes of my shoes had puddles of water in them. i didn’t bring any sort of rain jacket. but i rode it anyways. the ride was just right–not too hard, not too easy. Sonoma is just rolling hills and copses of eucalyptus trees. the eucalyptus smelled amazing in the rain…the cow pastures did not.

special 30th anniversary cupcakes. OMG so good... and absolutely NOT gluten and dairy free

special 30th anniversary cupcakes. OMG so good… and absolutely NOT gluten and dairy free

you know how they say that in SF there are more dogs than children? well, in sonoma there are more cows than humans. and it smells it.  that is reason enough for both of us to do the 75 or 100 next year!

postride

our plan was to stay in sonoma and go wine tasting sunday. but since it rained, we weren’t super excited about staying in a tent and risking a downpour overnight. so we came back and had pizza and soda for dinner then slept fitfully.

CnK

my good friend chris came out to cheer us on at the finish line. love this guy!

since we didn’t make it wine tasting, we had dinner at a wine bar with a friend this afternoon. it felt right. i’m satisfied with my experience of waves to wine. i didn’t ride to the point of exhaustion so i got to enjoy today. AND i have tomorrow off. :)

outtakes

toasting to a great ride

toasting to a great ride

K and birdie sleeping it off

K and birdie sleeping it off

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2 years. alternately titled: “fuck all this shit”

i don’t want to call it an anniversary because those are meant to be celebrated– its been 2 years today since i was diagnosed.

the last week has not been an easy one. i found out that i am full of active inflammation and demyelination. as a result of this constant ongoing stress of my over-active immune system i have felt very fatigued. while the doc i saw was eager to dish out info and options for medications with dangerous and deadly side effects, she wasn’t exactly open to doing anything at ALL about the fact that i don’t want to get off the couch…ever, really. i am now taking a full cabinet’s worth of supplements and green smoothies in an attempt to feel somewhat energetic. its sort of working.

aside from that its been a week of harsh realities. last monday i did a 53 mile ride. i rode in the mid day heat till it was nearly dark and at the end of it i had two thoughts: 1) that triple chain ring was totally worth it; and 2) there is no way i am riding the 100, or even the 75. there just simply isn’t enough time to get the rest of my training in so i will be riding the 40 mile instead. i feel so disappointed in myself. i have never truly believed that i wasn’t physically able to do something because of MS until that moment, 6 miles from the end of my ride when it was getting dark and my legs were screaming in hot burning pain that i came to terms with the fact that i simply didn’t have the energy. i rode those last few miles feeling totally defeated.

if i had felt better i could have trained more. i’m trying to be kind to myself and not furious. i’m trying not to call myself lazy, and weak, and a quitter. but that’s how i feel. i know i can’t compare myself to others and i know that even people without MS would struggle with this ride. i just wanted it so badly. i have been uncharacteristically tearful over it, and in general this week.  i refuse to think that i can’t ever ride a century just because i couldn’t this time. i know i can and that i will. but for now i have to accept that i couldn’t. that having MS limited me. i am finding that incredibly hard.

in the midst of personal failure, i started working full time. i now commute 20 miles (roughly 45 minutes) each way m-f. it’s my first job as an OT and i’m doing ok with it. i feel like i’m winging it a lot at this point. but i know thats just how its going to feel for awhile. i know my stuff, but it’s the first time i’m truly being asked to use it. all of the nuances of treatment the other therapists have down pat are brand new to me. i come home exhausted and starving each day. but it’s one step closer to my goal of traveling so i’ll take it.

i found out that today is the birthday of a good friend. she passed away from colon cancer last march. i hadn’t realized until today that her birthday is the day i was diagnosed with MS. it seems fitting though. she was one of my biggest supporters. we named our waves to wine team and designed our jersey in honor of her. so it feels full-circle to me that we share this day.

Rel and I walking over golden gate bridge

Rel and I walking over golden gate bridge

its been a hard week, but even so i’m doing pretty well. i’ve been relapsing for over 4 months now and my EDSS score is still a 2. i have 3 new lesions which brings my total up to somewhere in the 15 range and i still walk normally. i can still do everything i need to within a day with almost no limitation (except for fatigue!!!!!). i know how lucky i am.  even though i’m feeling sad and angry i still feel grateful that i am doing so well 2 years after diagnosis.

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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. :)

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