who i was is not who i am

a little over two years ago, i was working at what i thought would be a life-changing job. it was in a new location; somewhere where i had never lived before. heck, i had never even heard of this place until i got that job. it was a job doing something i thought i would love for the rest of my life. i look back now at that year and definitely think it was life-changing, but not in the best of ways. i think a lot of my association of memories with that year, and in that job, all culminate to the end of the year and my being diagnosed with RA.

there were a group of us who were “headhunted,” so to speak, for these various positions at the job, and i’ve kept in quite good contact with a few of them. in retrospect, it all makes sense why i was not who i wanted to be. i was grouchy from being sleep-deprived all the time, i was sleep-deprived because i couldn’t sleep more than two hours a night without waking up stiff and aching, i was hyper emotional because i didn’t know what was going on with my body, and i was pushing myself to do two “part-time” jobs that really weren’t part-time. it’s a wonder people even bothered to keep in touch with me at all from that time period of my life; i was a raging horror. but in the moment, i was so terrible at coping with everything unfair that i thought life had dealt me. the job started with my then-boyfriend breaking up with me….after 8 months….over email. literally, i was just DAYS into the job when it happened. that had to have been a sign as to how the year was going to go. and boy, was it.

so much happened in that year that i couldn’t even begin to describe. so much betrayal, lack of sleep, useless hurt, endless struggle and tears, and sadness. my songs on heavy rotation that year included some of the most depressing music on my playlists, like the sound of white album by missy higgins and brand new’s deja entendu. it took a whole lot of time to feel normal again after that traumatic year, and now i can look back in wonder and realize that the people i had around me are ones who saw me at my worst and still loved me. and for that, i’m eternally grateful.

now that i’m in a much better place, i can look back at some of those “depressing” songs and appreciate the emotions that come up for me. Especially for missy higgins. If i had been able to pursue dancing (that’s been one of my foolish hopes that’s too hard to let go of, the idea that i might still be able to dance one day), this song would have been one that i would have danced to, hands down. you can’t listen to the song and NOT feel something. her passionate little voice, singing of love and loss, backed by simple (and beautiful) piano strokes could make a stone feel some pretty heady emotions. Anyway, here is the “video” of the song (it’s not an official one, since one was never made). Have a listen, and hope you like it.

do you ever wonder

what “type” it takes to get RA?  Most of the people i know with autoimmune diseases are hard-working, driven people who got dealt abad hand.  i’ve never met a “lazy” person with RA.  perhaps it has something to do with the stress and pressure of wanting to be perfect?  i know i’m that way…i’m so hard on myself sometimes.  okay, i’ll be honest, i’m hard on mself ALL the time.

i’ve been having quite the month at work; feeling like i’m running as fast as i can to almost stay in place.  especially now that my boss and director know about my RA, i never want them to think i’m not as capable, if not more so, than the next person.

i also have been jumping through a billion hoops, trying to get my internship worked out for grad school.  i dropped my elective and was trying to get the paperwork all sorted out, but it was a mess.  by the end of the day, i felt like crying, but i didn’t have the energy or time.  i literally was working NON-STOP from the moment i set foot in my office at 7:15am til 3:00pm, when i had to leave for a 3 hour class, and then a group project after class.  i’m sure my 3 hours of sleep last night added to my crazy emotions, but the insomnia wasn’t something i could help.

in any case, i wonder if this crazy will to do everything just brought out the RA in me?  maybe it would have lain dormant had i never pushed myself into anything?

a weekend back home

i had lunch with a friend today who i hadn’t seen in a while, but who i always keep in touch with and consider one of my very best friends. we live in different cities a couple of hours away from each other, so it’s hard to get together as often as i’d like. we had a humorous conversation about how cupcake boy and i would make a pathetic couple, what with my RA and his CIDP. that would be one of those situations where i wouldn’t know who would be taking care of who, since we’d both be pretty lame. i guess that eliminates the caregiver role.

i had a conversation with my sister regarding telling my parents about my RA. Two years now of being officially diagnosed, with almost three years before that suffering the symptoms of what i thought was just a passing thing…and i still haven’t found a way to tell them. first, there’s the language barrier. second, i don’t live with them, so it’s easy to be “normal” for the few days out of the few months i see them. third, i don’t want them to worry about me. i’m extremely self-sufficient and capable, to a fault. i hate reaching out for help unless absolutely necessary. i know it’ll have to happen eventually, but for now, i’m holding out.

gotta get ready to head back south, but hope you had a great weekend! oh yeah, i’ll also leave you with some pictures of the beautiful sky as i was leaving friday to head home. it was such a crazy, hectic, sleep-deprived week, but as i was walking to my car, i was struck by the beauty of the sky and had to snap a few photos. enjoy!

the heart of the matter

so even though there has been no evidence that taking MSM and glucosamine supplements help with RA, i still take it. there is evidence suggesting that MSM and glucosamine supports joint health in people with NORMAL joints…but none in people with RA. again, that blind hopefulness that i’m so good at.

i had a really good talk with my graduate faculty advisor today about life. i laid it all out, letting him know that i may not excel this semester as i had in the past two semesters; that my life at the moment is complete and utter “quiet chaos.” he knows about my RA, my new job, and he knows i’m harder on myself than anyone else could ever be. i think it has been a blessing having him be my supervisor, because he has been nothing but positive. i can’t even believe that at the end of this year, i will hold a master’s degree…perhaps because there’s still SO much to do in the time in between now and the end of the academic year.

in my first post, i mentioned not being sure of when to break the RA news to people. i finally told my direct supervisor and director of the department about my RA. i told them i was hesitant to tell them, but that they would probably have figured out that something was wrong since i would be ducking out every two months to see my specialist. i told them i didn’t want them to worry or speculate on what was wrong with me; that i wanted to be upfront about everything. they are both wonderful people who were so supportive and understanding.

anyway, perhaps my three days of insomnia will end tonight and i will get to bed at a decent hour…but i don’t want to jinx it!

fingers crossed,
me

insomnia

so i’m thinking about participating in this “race” that will take place in October.  it’s not so much a race as it is a day of all-out silliness.  my life is so heavy right now (with some of my friends’ going through some tough times, and my impending enbrel decision) that i could use a little bit of lighthearted nothingness.

cupcake boy and i are to remain friends and nothing more.  the funny thing is, i’m not sure if he wants to be my friend simply because we have the autoimmune affliction bond, or if he genuinely just feels like we met at the wrong place in the wrong time.  in any case, it’s rare to meet someone who is more “broken” than me.

i’m having another insomniac night.  i’ve always had them, but they seem more spastic now with the RA.  I remember falling victim to insomnia a lot over the summers of my childhood, often reading voraciously until the sun came up, even if it was just a book (or several books) i had already read a million and one times.  i don’t know what it was, but the night owl in me begged to stay up until all hours.  early on, before i was diagnosed, i remember not being able to sleep a full night because i would wake up after two or three hours in SO MUCH pain.  looking back, i can’t believe i did all the things i did without medication.  no wonder i look absolutely POOPED in most of my pictures from 3-4 years ago; my body was begging for some relief!

it’s almost ludicrous, thinking back, how strong denial was.  i couldn’t brush my hair, walking became this funny little limp i explained away with a quick “oh, i must have hurt my ankle somehow,” taking notes in class became a battle between me and my grimace of pain on my face that i hid from the world.  i ran an entire camp (which was a 24 hour job, pretty much) without any meds, and boy, was i TIRED.  i did two “part time” jobs concurrently without any meds.  i supervised a whole building of residents while also taking a full courseload and working two separate jobs without meds.  it’s really wonder my body didn’t just up and quit on me.

as someone who never used to take ANY medication for pain (never, not for cramps, migraines, or not even when i had 3 of my wisdom teeth extracted at once), i can now say that i am eternally grateful for the miracles of modern science and the advances made in treatments available for RA!