Tag Archives: identity

It Gets Better

This morning I was sitting here sipping a cup of tea and I realized that I don’t feel MS-y anymore. Like, my morning didn’t consist of my eyes and arms shaking from fatigue or me feeling like I was made out of lead every time I tried to move my body or get out of bed. I also realized how little I actually think about having MS on a day to day basis.

Maybe that is a small thing to someone who has not experienced chronic illness but it’s huge to me. It’s not just about my physical health improving, though it did. Mentally I feel in control of my life again. Emotionally, I feel balanced. I can (cautiously) dream of a future without an overwhelming sense of fear, sadness, or grief.

When I think back on the last 4 years only one word can describe the first year in it’s entirety and most of the second: hell. It was a living hell.

Some of you are living that hell right now and my heart goes out to you because I will never forget how awful it was. But I’m not writing to rehash those painful times or tell you that my life is perfect and symptom-free (it’s not) I’m writing because today is a milestone. A day that I actually feel good and positive about my life with MS and I want you all to know that it does get better.

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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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not much to say

i have been pretty quiet lately. i guess thats because life is just chugging along and each day i think about having MS a little bit less. i LOVE that! i love that there are whole days i don’t even talk about it. it is exhausting to be constantly on guard and vigilant in your mind trying to solve every what-if of having this stupid disease. instead, i have been putting my free time to good use. now that SF has warmed up a bit i have focused on solving tangible problems in my day to day life instead.

for instance, we live in a building that has a coin-op washer and dryer. this has long been an issue. we hate doing the laundry because its expensive, the dryer doesn’t actually get the clothes dry, and its a pain to schlep everything up and down the stairs. in fact, one night K slipped on the steps and fell. i guess that makes doing laundry a hazard as well. SO, we have been looking into portable washers and line drying our clothes. if you have your own washer and dryer then you are blessed, but if you don’t you may understand what a HUGE improvement in our lives it would be to not pay $4.00 a load and have to use the washer that cat lady washes her litter covered floor mats in. i never thought i would talk so much about laundry!!

clothesline made from 3/4" wooden dowels cut to fit over bath tub

clothesline made from 3/4″ wooden dowels cut to fit over bath tub

bath tub clothesline in use

in use–holds a whole load of laundry and with the curtain pulled the laundry is out of sight 🙂

the next project i have been busy with is our back yard. its tiny, its mostly covered in shade by the upper decks of the building and at this point its completely neglected. i scored some great reclaimed redwood on craigslist for free and have been busy building a 4’x9′ planter box. the planter box so far has cost us about $15, which is an amazing deal for that size. i also hung up my hammock in the yard that i bought in thailand 6 years ago. i love hammocks!

backyard before

our backyard now

planter bed mockup

planter bed mock up. can’t wait to have this done!

other than that, we did our first training ride about 10 days ago and it was really fun and exhausting. my body was twitching from exhaustion afterwards but it was reassuring to know that i could do it. we made it 11 miles before we stopped for beer and food. not bad. 11% on the first ride towards our goal of 100 miles!

so thats about all that is going on in my life right now, i should be studying for my board exams but i haven’t gotten very far. i was never very good at studying and now i just feel completely overwhelmed with the amount of material i’m supposed to know for this exam. sigh. i’d rather build a planter or go for a ride. guess i better suck it up though, can’t be a kid forever i guess.

sharkmouth

on a hike in the northbay looking happy and shark-mouthed and CUTE

also, just because she’s adorable, heres a pic of birds. she had her first day of bad rap pit ed class and she did pretty well. a bit scatter-brained but she’ll get it.

that’s all for now!

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the only way out is through

friday was the last day of my internship. i did well. things on the home front were stable (as opposed to last year when it seemed like the cosmos were conspiring against me), and i felt pretty good. thats not to say that by friday evening i wasn’t ready for bed at 8, and that i saved most of my energy for the internship at the expense of my social life. but hey, i got through it, and even did well enough to get a potential job offer out of it. so yay me!

as far as my MS treatment goes, i guess that was an expense of the internship as well. i am what the docs would call “non compliant.” twice now i have tried daily injections and twice i have failed at it. at this point, trying to stick with something that i have failed at twice is doing nothing for my body or my psyche. nobody likes to fail, and especially with something as important as disease treatment.

so, in an effort to move forward and do something positive for myself i am currently back at the proverbial drawing board trying to plan out my next move. I have big issues with drug companies, with the medical system in general and also with jabbing myself with a needle nightly. i guess i could get over that last point (no pun intended…) if i truly believed in the medications. but at best i am a skeptic, at worst a cynic. i have a hard time forming decisions about my health based off of published study results that have been funded by the drug companies themselves. especially in light of a recent study published in JAMA that showed absolutely no reduction of disability from using interferon medications to treat MS.

to sum it up, i have decided that nightly shots of unknown benefit and exorbitant cost don’t do anything for my skeptic’s heart. and to be frank, if i’m going to be on treatment that no one can tell me for sure works, i’d rather be on one that doesn’t hurt, leave welts, bruises, and permanent dents in my skin from the destruction of fatty tissue, thank you very much. 

this is what my body looks like after a week of shots. what you can't see are the hard, itchy knots, lumps, and sunken in areas of fatty tissue destruction. it's not "just a shot."

this is what my body looks like after a week of shots. what you can’t see are the hard, itchy knots, lumps, and sunken in areas of fatty tissue destruction. it’s not “just a shot.”

i am looking into the oral medications now. the one i am most interested in knowing more about, as are many people with MS is BG-12. this medication looks promising. BUT it’s release has had many hold ups and at this point no one can give a date for when it will become available. until that happens i am seriously considering LDN. so far, there are not many studies showing it’s benefit (mostly because it is a generic form and not made by a multinational billion-dollar grossing drug company…there’s that cynicism again), but many people have done very well on it. since even the big drugs for MS can’t guarantee me much of anything, i feel that because of the low cost, low side effects and oral dosing it’s worth a try. heck, it can’t be worse than doing nothing like i am right now.

so that is what has been going on with me. i’m still trying to get insurance of some kind. COBRA is taking forever to get into place. i have a $7,700 MRI bill that needs to be paid. i have to notify the study that i have been noncompliant. and our adorable dog is still limping. we are trying to get her insurance coverage but pet insurance is modeled after the broken, unfair human system so that has been tricky as well.

hi

i just had a fantastic weekend of holiday parties and a wine tour in Napa and now i am enjoying a day to myself in my pajamas. things have been ok and its great that 15 months after diagnosis i can even think that. lately i feel like i have been able to take bigger risks and do more without having anxiety and baggage hanging over me. its nice that i don’t feel like i am living in a minefield all the time anymore. diagnosis sure is a mindfuck, at least it was for me. at this point i am trying my best to forget MS is even a part of my life. i want to live like i did before, albeit with a few more doctors appointments, pills, and a LOT more intention.

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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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me and you vs. us

for me, being diagnosed changed ALL of my future plans.

at the time i was diagnosed, my partner and i had only been together for about a year. things were good but still at a point where we could take it down many different roads–were we partners? were we just lovers? was it growing into more or receding into less? i had no idea if she would want to stay, i mean, its a pretty hefty diagnosis. so i had no expectations. for her it seems there was no question, or least not one she needed to deliberate on for long–she stayed. right now we are struggling. i am not sure how much the diagnosis plays into that. i’m sure she gets tired of feeling like MS dictates what we do and when we do it. i really try for it not to be like that. i really try to continue to be the same person i was before…but the truth is i’m not.

a lot of times she doesn’t understand how i’m feeling and there are times i really wish she could be more supportive and less quick to assume that i am intentionally doing things to upset her. but then there is also a part of me that remembers how hard it must be to love me, someone who faces every day with the knowledge that all bets are off for my future, and by proxy for hers too if she stays. i have to remember that she is adjusting to this too and she, for better or worse can’t feel what is going on in my body.

it must take incredible amounts of empathy to be a partner to someone who has a chronic illness.

and i’m trying to remember that she is doing the best she can too. and that most of the time she is very helpful and understanding. i just wish i knew how to make things more normal.

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just the start

one year ago, k. and i boarded a plane to puerto vallarta. i didn’t know it then, but my life would change on that trip. i came down with shingles, which caused a MS flare, which caused chronic tingling in my legs that took 6 months to go away. eventually, it led to my diagnosis.

i had no idea what i was walking into when i got on that plane. quite literally and figuratively, i was leaving behind my life as i knew it. the cascade of events that would follow changed me.

forever.

this is just the start of an entire year of anniversaries.

since that spring break trip (my first and only in a shamefully L O N G college career) i can feel the difference in the me before diagnosis and the me after. last semester feels like a dream. it is the bridge between the two me’s–the months where i transitioned between them. it’s not that i don’t believe in the same things that i did before, or that i can no longer relate to the hopes and dreams that i had before diagnosis. it’s just that life in general feels different.

last semester was 4 months of sadness and fear and loss. and now i’m past the initial shock and i no longer have tingling legs (although i still do get tingling occasionally when walking). but i haven’t lost that sense that sometime soon the other shoe will drop. i am learning that i will probably always feel that way.

maybe next year i can learn to be ok with that.

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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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