a month

folks, this is what rock bottom looks like. truly. even being diagnosed wasn’t as low as this. i know it can only get better, at least that’s what they say, whoever they are. at any rate, i’m still trying to find the words to tell my mother how painful it is to be blown off and rejected by her over and over again. i’m also still trying to find a way to come to terms with the fact that my my family will never act as a family. my heart knows that’s the truth, but it wishes it different anyways. even though i am depressed and hurt and full of impotent pain there is a voice in my head telling me to ride this out. and i’m trying hard to listen.

i vacillate between feeling overwhelmed and incredulous at how bad things truly are. i wonder how things got this way. as a child, i never realized how bad it was until i was older– i thought everyone’s family was like mine. sometimes i think my family can still be like everyone elses. and sometimes i just hurt so deeply i think i might split in two.

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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Waves to Wine 2013

Forecast: rain

Outlook: hopeful

post-ride. i love how it stopped raining after we were done riding

post-ride. i love how it stopped raining after we were done riding

it rained the ENTIRE ride. it was freezing and the toes of my shoes had puddles of water in them. i didn’t bring any sort of rain jacket. but i rode it anyways. the ride was just right–not too hard, not too easy. Sonoma is just rolling hills and copses of eucalyptus trees. the eucalyptus smelled amazing in the rain…the cow pastures did not.

special 30th anniversary cupcakes. OMG so good... and absolutely NOT gluten and dairy free

special 30th anniversary cupcakes. OMG so good… and absolutely NOT gluten and dairy free

you know how they say that in SF there are more dogs than children? well, in sonoma there are more cows than humans. and it smells it.  that is reason enough for both of us to do the 75 or 100 next year!

postride

our plan was to stay in sonoma and go wine tasting sunday. but since it rained, we weren’t super excited about staying in a tent and risking a downpour overnight. so we came back and had pizza and soda for dinner then slept fitfully.

CnK

my good friend chris came out to cheer us on at the finish line. love this guy!

since we didn’t make it wine tasting, we had dinner at a wine bar with a friend this afternoon. it felt right. i’m satisfied with my experience of waves to wine. i didn’t ride to the point of exhaustion so i got to enjoy today. AND i have tomorrow off. :)

outtakes

toasting to a great ride

toasting to a great ride

K and birdie sleeping it off

K and birdie sleeping it off

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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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whats going on with me (other than MS)

its been a long time since i updated on whats going on with me. i think the last time i talked about school/internships i had completed my final internship and was studying for my board exams. i’m happy to report that i passed…4 months ago. since then, i’ve just been enjoying a simple life where i just work and have days off. no more studying, no more 6 days a week, no more group projects and 2 hour commutes. it has been GREAT, a much needed break from the chaos of the last few years.

i still look back on school and that final year in particular and wonder how the fuck i did it. i was stressed beyond belief. the fact that i was even able to carry on and not crack under the pressure is, in my opinion one of my biggest accomplishments. i did more than graduate, i survived the gauntlet. 

but its been 8 months now since i stepped foot onto the grounds of my internship site and 4 since i passed my boards. even though i want to rest here i have to keep moving forward. i’ve given myself a fair amount of shit for not moving on faster, but when it comes down to it, its what i needed. i needed this time to clear my head, to rest my body, and to prepare myself for my future. 

i’ve had a plan for the future that i haven’t shared much with others but i’m going to share it now: i want to travel as an OT. as luck would have it, my family has an RV i can use which makes things quite a bit easier and less costly. i’m really excited! most people that i have spoken with about travel were quite emphatic about needing at least a year of experience before setting out. well, i’ve always been good at winging it. i mean, how do you think i made it through school after all the bullshit i went though?! it wasn’t on good looks and charms, i can guarantee that! at any rate, my plan is to get 6 months of experience in and then head out of here. that puts me at a departure date of around march. 

i just accepted an offer for my first full time OT position. i’m a mixture of excitement, relief, and fear. that’s probably pretty normal though! i’m a bit anxious about working 5 days a week and doing a long commute, but i’ll just have to see how things go. i finally (mostly) feel like i have energy again which is something i have really struggled with. its hard for me to think that i will lose that. i don’t just want to save all of my energy for a job. i want to live life! 

so there you have it, i turned in my 2 week notice on tuesday which was bittersweet. i feel so at home at my job. even though i don’t like the actual work i love my coworkers. it’s really hard to leave but i have to move forward. i just keep thinking about all of the gorgeous places that await me out on the road and i know that i have to do this to make it happen. it’s still hard though. 

i would like to travel for about 2 years, which means i would have 8 assignments total. i am compiling a list of places that i would like to visit. so far i have:

1) montana. in particular i HAVE to spend time in glacier national park

2) new orleans

3) maine. i’ve always had a fascination with maine. it all looks pretty beautiful

4) georgia. those islands!

5) ALASKA!!! 

6) santa fe. i’m not a huge fan of the desert but i think if anywhere can change my mind its new mexico…or maybe utah.

7) florida keys

8) hawaii…anywhere!!!

after these 8 assignments are up i have 3 plans:

1) loooooooooong vacation

2) family?? 

3) stem cell transplant

but those are a topics for another (maybe 3?) post. :)

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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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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2 lezzies one house

today i opened up facebook and found that another couple i know are getting married now that DOMA has been struck down and it’s legal. stating the obvious here: i’m thrilled for them. they are a fantastic couple who are really happy together. stating the not-so-obvious: any time i see a post like this, i can’t help but compare myself and my life to others and find myself feeling sad and lonely and restless for change. i really need to stop looking at people’s pictures… either that or i need to start friending only people who are less successful in life than i am because seeing all of the happy people surrounded by large groups of smiling, jumping friends and scenic pictures in my news feed just makes me wish that i had  A) money; B) friends; and C) energy to do things with my money and my friends.

i honestly don’t know how people work all day then do a happy hour or the gym, clean the house, make dinner, watch a movie with friends, take the dog for a walk, go to bed late, then get up and do it all again the next day. but judging by my newsfeed, my friends never sleep, always have a drink in their hands, and are constantly surrounded by 20 of their closest friends. and they also have the energy and time to invest into their perfect relationships too.

i was sitting there feeling like a total lame duck until a friend posted this into my news feed. now i feel a little bit better but confused as to what to do about it, since the problem AND the solution both originated in the same place– facebook.

oh well, i’ll just talk about what i’ve been up to. namely a gazillion shoestring DIY projects. i’m seriously considering completely changing this blog and calling it something like 2 crafty lesbians. or, as K suggested 2 lezzies, one house. because all i really do anymore is DIY crap around the house. it makes me happy, what can i say?

on our list for the next couple of weeks is a wooden pallet deck and a duvet cover. the planter box is ongoing, so i will be posting some cool pics of everything growing soon. we harvested our first bit of greens last weekend. so cool!!  i have some super exciting news about future plans i will be updating on when i get a few things worked out. and no, a baby is NOT part of the plan (although i guess that would be a pretty amazing DIY project…hmmmm)!

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