Tag Archives: anger

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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sugar coating leaves a bad taste in your mouth

whoever says MS doesn’t define them is a liar. MS affects every part of my life! every part. even the private ones, the parts i work very hard to compensate for. it affects how often i see my friends, whether my house is clean, where and how often i shop for groceries, and what job i will take in the future. it is something that i have to consider in every aspect of my life. now tell me, how does that not define me? how does that not shape the decisions i make–the decisions that form patterns and habits and roles? the decisions that become actions which are consciously executed by my body and mind and are visible and observable by those around me.  how is that not then, a definition of what i do and therefore, who i am?

i get really tired of hearing such ridiculous mantras from people. MS does define us! let’s just learn to be ok with that. let’s just learn how to grow in this definition instead of wasting our time trying to convince ourselves that it doesn’t exist.

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anger

feeling frustrated with the american life lately. overwhelmed with grad school. hit my wall 2 weeks ago and since i haven’t fully recovered. when i think about my life all i can think about is how i am failing at it right now. i am failing as a partner, as a friend, as a student, as an employee. failing at all of it! it should NOT have to be this way to get through school!

today i looked into switching over my health insurance to the school plan so that when i cut down my hours to per diem at work i won’t be uninsured and won’t have to pay nearly $1000 for COBRA each month. i was willing to give it a shot, even knowing that i would likely lose my doc’s and have to start all over again with a new neuro…until i inquired about prescription coverage. $500 a YEAR. that’s it. wouldn’t even cover half of one month of medication. useless!! how is this legal?!

if you know someone who thinks that universal healthcare is an infringement on thier rights, you can refer them to me: a gainfully employed, non drug-addicted, intelligent, and hard working person who has had the misfortune of being handed one shitty diagnosis. then that person and i can have a nice chat about whose rights are being infringed upon here.

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What a Year (give or take)

i never could have imagined that my 30th year would be so challenging. then again, i never really took the time to imagine what 30 would be like at all so how could i have had any idea?!

it all started with a bike wreck in september of 2010. it didn’t seem like a huge deal at the time. i had some shoulder and back pain but my bike, my laptop, and my brain all seemed to be in perfectly good working order. i went about my business and threw in some PT to get my shoulder in good condition again. i began yoga to strengthen my shoulder but after a couple of months i could no longer sit in the chairs at school without back pain. chronic, aching back pain. and so the spiral began.

i had trouble walking after i would stand. i still had shoulder pain. i could no longer ride my bike or work. my doctor put me off on a 6 week medical leave so that i could focus on PT and not aggravate my injuries. spring break came and i took my first ever trip to mexico with a close friend and my partner. shortly after arriving, i had fatigue that i couldn’t shake and an itchy rash on my back that was slowly spreading. a week after i came back i was diagnosed with shingles. i was then prescribed antiviral pills in addition to muscle relaxers and pain meds.

i began to see a chiropracter three times a week plus PT twice a week. i went back to work as soon as the shingles were healed wearing a back brace and with chronic tingling in my legs. nothing seemed to change the tingling and between the chiro, PT, dr’s appts, school, and work, i barely had the energy to celebrate and enjoy graduating college in may of 2011. i spent the rest of the summer shuffling back and forth between dr’s appointments.

somewhere in the midst of that i learned about a friend’s stage IV metastatic colon cancer. i am still trying to process her very serious condition. it is all so unfair.

at the end of july 2011, i reinjured myself at work helping a patient into her car at her discharge. i have never been in pain like that and i hope that i never will again. more pain meds, more steroids, more addictive opiod medications. i now have quite the collection: ativan, valium, flexeril, vicodin…my 82 year old grandpa takes less medications than i do.

workers comp ordered an MRI of my neck and low back in august of 2011 because ever since i hurt myself on the job, in addition to a worsening of my low back problems, i also had tingling in my right hand and pain in my neck and shoulder blade. at my next appointment the workers comp doctor went over the MRI results with me. given all of the symptoms i was having, especially the tingling up to my waist (used to only be in my legs) i was pretty sure that the MRI would show many disc herniations.

it didn’t.

instead it showed that i had multiple demyelinated lesions in my spinal cord. the radiologist’s impression was multiple sclerosis. all i could think about then was the woman who came into my unit who was unable to walk and had such bad tremors in her arms she couldn’t feed herself. she was 37. that could be me.

what. the. fuck.

how could the last year be so fucking bad?? its as if the people i care about were falling apart in front of my eyes and i couldn’t do a thing about it. i felt so betrayed by my own body and so numb from bombshell after bombshell being dropped about my own health and that of my friends and family.

it was an incredibly tough year. i tingled everyday. i couldn’t walk for more than 10 minutes. i had doctors appointments and workers comp nonsense to deal with in addition to a graduate program and the demands of working on the floor in a hospital unit. i saw two neuros who both agreed that i had MS.

i was so fatigued i would cry myself to sleep. i felt like everything in my life was uncertain. i was half in disbelief that i really had MS and half terrified because it was true. i still have those moments, the “i can’t believe this is my life” moments.

after a fair amount of “what the fuck” time, i got myself together and began to think about what i wanted out of this life. being diagnosed was forcing me to consider that i was not infallible. a notion that had not been challenged thus far in my life. i could do anything i wanted at any time! consequently, there were many things that i put off because i felt like i could get to it later, but lately i have been aware that my brain is a time bomb. that i am a time bomb. in that sense, there was a new urgency in my life that i didn’t have before. what if i can’t travel later? what if i lose the dexterity i need to learn to play guitar? what if i am no longer able to walk and therefore unable to hike the trails i have been wanting to hike for so long? any of those things could happen, or they may never happen. i have no way of knowing. i decided that from now on i have to focus on leading my life with purpose and stop thinking i’ll get to it later.

i also discovered that there was a part of me that was in complete awe of what was going on in my body. it was like there was a little kid in my head watching a science experiment exclaiming “cool!” i hope that doesn’t come off sounding really egotistical or anything…

for class one semester, i had to read the memior of a man who was paraplegic from a car accident called “life on wheels.” after his accident, he discusses how others were wondering if he was planning to kill himself, while he was busy being fascinated with how his new body worked. i can relate to that. maybe i’m just a total nerd looking at her own body as the biggest, baddest case study she’ll ever work on, but in a way its how i feel. i am fascinated with knowing more.

since being diagnosed, i finished a whole semester of grad school under unbelievable amounts of stress, worry, and medication side effects. i’m proud of that. my grades were all A’s except for research ( i struggled with this one because of the MS). the tingling one day disappeared and only shows up occasionally and is extremely mild. i found out that i have an incredible support network around me of friends and family that truly care about me, they are my cheerleaders. and if there is one thing that i appreciate the most so far about having a chronic, progressive disease with only marginally successful treatment options its that it helped me realize that fact.

and there you have it: the story up till now complete with a sappy ending.

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