Category Archives: new normal

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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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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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).

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our planter box is FINALLY done!!!

this was what it looked like a few months ago:

and this is what it looks like now:

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top row starting on the left going across: 3 squares carrots, 1 square swiss chard
2nd row: arugula all squares
3rd row: dino kale all squares
4th row: 2 squares spinach, 2 squares blue kale
bottom row: 1 square collard greens, 3 squares blue kale

our box started out much bigger as you can see in the first picture, but then after constructing it to be the larger size we realized there was NO WAY we were going to have enough dirt to fill the box. it could have been enough if the dirt in our yard didn’t look like this:

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NOTHING will grow in that!

and yes, in case you are wondering, “dirt” full of rusted and sharp things such as this DOES violate habitability codes. but our thankless landlord was less concerned about our safety and quality of life and more concerned about us using water (he pays for it). he removed the hose and sent us a letter stating that we agreed to plant native drought tolerant plants and water using a bucket filled from our kitchen sink…which is up a flight of stairs. we never agreed to any of that. so there was a delay getting our box set up and planted because we had to wade through some tenant-landlord negotiation muck before it could happen.

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we are really happy with the end result though. and we can’t wait to harvest some of these greens! having MS was definitely the impetus to eating better food, and eating better led me to learning more about what i am eating, and this in turn led me to making a planter box to grow veggies. now we have a yard that looks less like a construction site dump overgrown with weeds and more like a place i wanna spend my time. the neighbors are taking advantage of the hammock i hung which makes me really happy 🙂

none of this would have happened if i didn’t have MS. being diagnosed was and still is one of the most influential events of my life. but it’s not always a bad thing.

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exacerbation

the neuro confirmed last wednesday that i have had an exacerbation. i came home, crawled into bed and watched netflix for the rest of the night. K tried to be supportive but i shut her and everything else out. i know it could be worse than a mostly numb left half of my body and a week’s worth of dizziness, but i am still struggling to get right with it. i am thankful its not worse, but i’m also angry, frustrated, scared, and sad. JUST when life was finally feeling good and normal i lose feeling in my left side and i’m dragging my exhausted ass through the week.

AGAIN.

it all feels scary again, and i hate it. i hate that there isn’t a damn thing i can do about it except wait it out and hope that this exacerbation didn’t take too big of a chunk of neurons out with it.

i think that’s what i resent most about this stupid disease– the impotence that comes with it.

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!

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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