Archive for October, 2008

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i should join the circus since i’ve now learned how to jump through rings of fire

October 31, 2008

i’m so sick of the healthcare system in the U.S. i’m STLL uncertain as to whether or not I can get the vaccines I need. i called my specialist and primary care phys about 70 times now, and neither one can give me anything more than “uhhh, yeah…i dunno.”

i finally got directed to a travel clinic after about 10 calls (seems straightforward, right? but not ONE person could tell me to call there until an undisclosed amount of pestering on my part), but the travel clinic hasn’t given me a call back yet. i asked the lady who answered the phone if they had the non-live vaccines for typhoid and hep a, to which she said “yes, we carry them here.” so since i ASKED about non-live versions, you’d think she’s understand that i NEED the non-live versions. right?

wrong.

so i asked her “since i’m on methotrexate, i can receive the non-live forms there, correct?” and this apparently is when she decides to open her ears.

“you’re on methotrexate? then you need to ask your doctor what to do if you can’t get immunizations”

so i reply (just a littttttle bit snappy) “i did. they said absolutely no live vaccines, but i know there’s a non-live version of hep a and typhoid. you just said you carry them”

“well what did they tell you?”

at this point i’m thinking, is there a delayed response in her understanding me? does it take two or more times of repetition before she UNDERSTANDS what i’m asking?? so i grit my teeth and say “well, they said i can not, absolutely not, have live vaccines.  which is why i was wondering if you carried non-live vaccines”

*silence*

she says “i’m not sure i’m following…:”

at this point i’m ready to scream, cry, or punch a hole through a wall.  i had also been up late writing a paper, so i was even more enraged that people who are PAID to know things about their workplace DON’T know them.

will the saga never end?  sorry for the upset post, i’m just so frustrated with it all!!!!  I literally spent about 4 hours on the phone today, trying to chase down answers that nobody wants to give me.  AUGH!

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Peru back on…?

October 30, 2008

according to this site, i might actually be able to go to Peru anyway!  The areas we’d be going through would be Cusco, Inca trails, Lima, and Machu Picchu and apparently all the vaccines needed for those areas are offered in non-live forms!!!  I’m hopeful again.  My friend still wants to do the amazon, but there’s no freaking way in hell i would go there.  i’d rather not die on my first trip out of the country, thanks.

sad, though, because i’ve actually always wanted to go to the amazon.  my dreams (for the amazon, at least) were crushed before i even had chance to realize them.

my appointment with my specialist is nov 6 and my primary care phys. on nov 7, so i guess they’ll have the final say.  keep your fingers crossed for me!

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travel restrictions due to live vaccinations

October 29, 2008

today i was hit in the face with the depressing reality of living with RA.  I’ve been on methotrexate (MTX) for a while now, and have actually never really had too many side effects.  but today – oh today.

i keep denying that i am broken.  i know this.  anyone who reads this blog knows this.  but today, i could not deny it.

a friend and i had been planning a trip to peru.  everything was almost in the works, but then i started wondering about immunizations and vaccinations i might need.  every website i visited said something different, and some of the vaccines i need are offered in “non-live” form (versus the live form which would basically kill me in my immunosuppressed state), but the general consensus was that i would need yellow fever…and that is only offered in live form.  this is absolutely NOT recommended, since i’m immunosuppressed as a result of the MTX.  my old rheumatologist would have gotten back to me directly had i left a message asking about this, but my new rheumatologist is a d-bag.  he’s an un-caring, un-empathetic man who doesn’t give two craps about his patients.  I really hate my company for forcing me to switch insurance companies and having to choose a new specialist.  but because i’m no longer their patient, they can’t “advise” me.  i mean, i understand their point – who wants to possibly get sued by someone who isn’t legally their patient anymore, even if they were just trying to be helpful?

healthcare in the U.S. is so messed up.

and my friend wasn’t making it any better, demanding to know when i would know for sure if i could go or not because if i end up not being able to go to Peru, she “still wants to go somewhere over break.”  the tone i got was that she was basically  blaming me for ruining her plans because of this f***ing disease that i have no control over.  i was livid…and then i got sad.

this is my reality.  i can’t change the fact that there MAY be some things i cannot do, no matter how MUCH i deny my disability.  but until now, i’ve been able to coast along, pretending like everything is okay.  i’m so angry, sad, frustrated, annoyed, pissed off…EVERYTHING! that there may be some places i can’t even travel to because of the stupid live vaccines.

i’m feeling quite disheartened at the moment.  has anyone out there gotten a live vaccination while on MTX, or know someone who has?  specifically yellow fever?  i’m just searching for answers and a possible silver lining…but it’s not looking good. :(

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it’s like i lost my P.I.C.

October 28, 2008

so, things are weird right now with cupcake boy.  i feel like we established a friendship, but i haven’t really heard from him in a while.  it’s weird, because i kinda saw him as my partner in crime (P.I.C.) in the big, bad world of autoimmune diseases.  maybe i thought we were closer than we are just because of our disabilities.

i called him last night just to see how he was doing.  anyone who knows me knows how MUCH i hate using the phone.  like, nothing causes me greater anxiety than picking up that phone and calling someone up to “chat.”  it’s awkward and weird, and having no other reason to call than to see how he was doing, i was anxious.  half the time, when i call, i hope it goes to voicemail.  the other half of the time, i hope desperately for the person to pick up.  it’s a battle between opposing worlds, really, and i’m never sure how i feel until one option wins out by default.

anyway, it went to voicemail.  i know he gets busy with work, but it’s weird to have a friendship with someone that involves voicemail tag and email messages/texts that are super short.

i think i mostly miss the way he made me feel when we hung out.  i felt smart, witty, fun, and gorgeous.  not that i don’t feel those to some level on a daily basis, but around him, it was heightened.  he’s just one of those super charismatic people who you want around you all the time.

maybe it was the fact that i felt normal when it was just us, because we are both broken.  whatever it is, i miss my friend.

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old habits die hard – a hoarder’s tale

October 27, 2008

i’m one of five kids in my family. being the middle child has always been an easy role for me. by the time my younger brothers came along, i was sick of being the youngest child. however, living in a tiny house with five siblings, in the lower-to-middle class range, meant we had to hoard our goods if we didn’t want someone else to touch it/eat it/steal “borrow” it, etc.

this kind of hoarder behavior became almost a survival tactic. throughout our childhoods, my sisters and i would instinctively grab something our parents brought home (food, gifts, toys, new crayons – nothing was out of the question!) and stash it away like squirrels stashing nuts for the coming winter…or something.

it was only natural that when removed from my home setting, a place where i spent 18 years of my life, and into the first year of on-campus housing my freshman year, my vice-like grip on all things “mine” would need to be adjusted. i shared my snacks, i let my roommate borrow my art supplies, i was going strong. and then it happened.

i came back one night after a long day of classes, unlocked our door, and found my roommate on the floor, on MY side of the room, with MY (clean) pillow under her head, asleep on the (DIRTY!!) ground with the TV blaring. the tv normally faces her side of the room, since she was there more often than i was, so the fact that it was turned towards my side was odd already. but the fact that she was passed out for some reason, under my bed (my bed was raised so there was a good 3.5 feet under there), with my pillow under her head seemed to trigger some kind of primal instinct in me to go apeshit.

i get all territorial when it comes to my bed, especially when it comes to the cleanliness of my bed. i know it sounds crazy, but i don’t like it when people put their feet on my bed and they’re wearing the shoes they’ve been stomping around on all day, outside, on the dirty ground where they might have stepped on dog crap, gum, etc. i am a night shower kind of gal, and love getting all lotioned up and then slipping into nice, crisp, clean sheets and drifting off into peaceful sleep.

so my first instinct was to screech “what are you DOING?!” her eyes shot open, and she had a look of complete terror. i mean, i guess i DID startle her out of slumber, but hey, she was USING MY CLEAN PILLOW ON THE FLOOR!

she sits up, asking “what? what’s going on? what happened?”

“why the hell are you using my pillow when you have a perfectly good one on your bed?! and why are you on the FLOOR with it?!??!”

*silence*

“well?!”

she gets up, guilty, and kind of brushes off my pillow and sets it BACK on my bed, thus enraging me even more! She did NOT just put my once-clean (but now disgusting) pillow back on my clean bed!  i spent a good 10 minutes incredulously firing questions at her, demanding to know why she would do such a thing.  her response?  a shrug, followed by “i didn’t think it was that big a deal.”

yes, i admit that it was crazy and neurotic and a tad overdramatic, but i was young and had lived 18 years of my life in a house where you had to claim your stake.  we made nice after that, but i always secretly arranged my pillows in a manner that would tip me off if she ever decided to pull a stunt like that again :)

anyway, that long story brings me to the reason for this post.  i thought that a good, solid 8 years after moving out of my parents’ house, i would have kicked my hoarding habits.  i’ve managed to share my belongings openly with people, even money.  i’m what some would describe as a “saver.”   you know, for those weird times when things happen like you need to replace all four tires on your car and you don’t have the money to pay for it?  i vowed that that would never be me.  as a child, i remember my dad being unemployed for a period, and that was the hardest time of my young life.  so i became this crazy avid saver, slowly building up my “money cushion.”  anyway, that just goes to show how open i am to sharing, since the money i earn is basically the closest thing to me i could offer to others, besides an internal organ.

but last night, i had a dream that one of my office-mates was in my office, using my computer and casually browsing through my files.  my personal files.  i went completely batshit crazy on him.  this guy has also been somewhat of a pain in my side since he’s one of those people who ALWAYS NEED ATTENTION.  i guess my persnickety attitude towards all things “mine” also include my validation of your actions.  i don’t give validation for you just being alive, and you should quit asking me to.  i unleashed my fury, demanding to know why he couldn’t use his own computer and getting more and more irate as he refused to leave my office.  he’s one of those guys who is optimistic, even when others are angry at him, and it’s infuriating.  why couldn’t he tell that my death glares were NOT friendly and that he should scat from my desk immediately?!

i woke up in such a rage and ready to spit fire…and then started laughing at myself.  why was i even dreaming about hoarding??  it was so random!  and yes, this co-worker is kind of annoying in a harmless way, but i doubt he’d ever loiter in my office without my being present.  it was just so absurd.

every once in a while, i’ll catch myself still doing hoard-ish things for no apparent reason besides the fact that old habits die hard.  the office is a prime place for my hoarding ways; there is always chocolate lying around.  i don’t even LIKE chocolate, but i’ll find myself sneaking that one mini snickers away from the pile and stowing it in my middle/food drawer, just in case i ever want it.