Category Archives: milestones

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.

Advertisements
Tagged , , , , ,

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.

Tagged , , , ,

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.

Tagged , , ,

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).

Tagged , , ,

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!

 

 

 

 

my ride

after my diagnosis, waves to wine felt completely unattainable. i was filled with shock and anxiety, sure that at any moment i was going to lose all faculties and be permanently relegated to a wheelchair. but it’s been almost 2 years and that hasn’t happened yet…

so maybe its time to get back in the saddle.

i was drawn to the ride for all of the obvious reasons: get in shape, sense of accomplishment, raise awareness for MS. but none of these was the reason. sure, i felt a connection since the ride itself benefits people with MS…or at least it benefits the bloated, beureaucratic non-profit that claims it benefits people with MS. consider it trickle down philanthropy.

i digress.

last week while on a stationary bike at the gym, i reflected on the state of my body. i am weak. my joints are a mess. i hurt way more than a 32 year old should. as i lamented on the sad state of my physique, the reason came to me. cheesy as it sounds, while pedaling up another “hill” on the screen with leg muscles burning and screaming i imagined myself as a phoenix rising above all of my fear and pain and anxiety that has held me back since diagnosis: this ride is about making a come back. it has taken a huge amount of trial and error to prove to myself that i am strong enough to do the things i used to and beyond that, to push myself harder, and that it really will be ok. 

and THAT’S the reason for my ride!

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.

Tagged , , , , , , , , , , ,

9/5/11

this is an email i wrote on  9/5/11. one year ago. in a few days i will have been diagnosed for a year. seems like a lifetime. 

so i guess i should begin with how a MS dx was put on the table. i have been having back and shoulder problems for almost a year and i have had tingling in my legs for about 6 months. recently, i reinjured myself at work and because i now have tingling in my hand, the docs ordered a MRI. thats when this all began. the MRI goes on at length about the multiple lesions in my cervical spine and one in my lumbar spine (“confirm MS dx clinically” “further workup advised”). i was referred to a neuro who examined me and then ordered more MRIs that included ones of my brain.

i just finished those on thursday and i am now stuck in a waiting game to find out what the neuro thinks. my uncle is a nurse practitioner in a chronic pain clinic and when he found out about what was going on he called me and wanted to know about the MRI findings. he said he expected them to find brain lesions as well. he apoligized and said he has worked with many patients with MS and given that i have multiple spinal lesions he was fairly sure i would have them in my brain as well.

i am hoping that this will be something else. even when my neuro wouldn’t speculate as to the cause of the lesions, only saying that MS was the most common reason for someone my age to have spinal cord lesions i didn’t lose hope. it was hard to hear it from my uncle, knowing that he does have a lot of experience working with patients who have MS, but i still was not thinking it could be true. however, yesterday i went to visit my mom (a critical care nurse for 30 years) and we were talking about the MRIs and i mentioned that my uncle thought they would find brain lesions. she quietly said, “i do too, honey.” she averted her eyes. at the time we were eating brunch at a restaurant and i instantly lost my appetite. it was SO hard to hear that from my mom.

last week was probably one of the hardest ones of my life. in addition to going through marathons of MRI’s, i was basically ambushed by the drs in the occupational health clinic at work (original MRI was through workers comp). i had two doctors going on at length about how my symptoms were from MS, asking me questions about how i felt, telling me they were going to drop me as a patient because i have MS (even though my neuro has not even confirmed this yet…how do they know? i guess MS patients cannot also have a work-related injury??). i felt completely demoralized after leaving the office. an hour of two doctors interrogating me, teaming up and working off each other to make me feel as awful as they possibly could about my future. i went back up to my unit and cried in the break room…and i am NOT a “crier.” i almost never cry.

if i am really honest with myself then i have to admit that i have had some vague symptoms for quite some time. i just thought that was me. i was seeing a chiropracter and he discovered that i have a positive tandem romberg test (balance issues). at the time, he was trying to convince me that i had this because of a gluten intolerance. but i suppose i can now safely attribute that to the spinal lesions. i have always blamed the chiro for the tingling i feel in my legs. he adjusted me and then later that afternoon i first felt tingling in my legs. now i wonder if the spinal lesions were the culprit and it was just coincidence that it started after the chiro session.

the neuro cautioned me against hot baths, etc. and in direct defiance of what she said, after my appointment i came home and immediately ran a hot bath. when i got out i was shaky and didn’t feel well. same thing happened to me this weekend. i went up to the mountains and had to shut the a/c off when i was driving up a steep incline. by the time i got to the top i was shaky again, and by the end of the day i was completely and totally exhausted. that was yesterday. i slept about 10 hours last night and have done nothing but veg on the couch all day and drink 4 cups of caffienated tea and i am still ready to fall asleep. i also have been having such a hard time with memory. if i answer the phone at work and the caller gives me thier name, by the time they tell me who they would like to talk to i have forgotten it. maybe its just stress from everything going on, but it seems like it gets worse everyday.

i am meeting with the neuro on thursday and i feel like the closer it gets, the harder it is to think about anything else. anytime i am quiet, my mind wanders to MS. the countdown is agonizing. gah! my final year of school…seriously?!

anyways, sorry for going on forever…i’m just trying to manage all of this and get through the week without falling apart.

Tagged , , , , ,

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.

Tagged , , , , , , , , , , ,