Tag Archives: adjustment

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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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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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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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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