Patrick Swayze

I just learned that Patrick Swayze has pancreatic cancer, which has a 5% survival rate.  It’s so hard to think that the man we women fell in love with in dirty dancing, who seemed so invincible, is slowly battling pancreatic cancer.  it’s so sad.  and despite my own host of complaints and “broken-ness,” I can’t help but be moved.  i’m learning more and more how much i am a bleeding heart philanthropist.  fighting for others gives me a reason to fight.

in any case, here’s a pic of the swayze in his heyday.  hopefully he’ll be in the lucky 5% who survive.

little, yellow, different

remember that scene from wayne’s world, when they were doing commercial rips and they were talking about nuprin being little, yellow, different?  the title of this entry comes from a lighthearted place, but the entry does not.  here is the saga of what went down last night (Halloween night).

my friends and i decided to dress up as the four seasons to paint the town red.  we got tickets to the block party downtown so we can truly revel with halloween’s finest drunkest 🙂  i had had a somewhat stressful week, with a big deadline wrapping up Friday and some big research paper issues this week, so I was ready to live it up.

i end up being designated driver because of my inability to drink (stupid methotrexate).  normally, me driving downtown is already bad enough.  now, put me behind the wheel when there are 90 bajillion drunk folks wandering around (and in costumes!  having a “disguise” tends to make others less inhibited..or is that just the alcohol?), and i’m even worse.  first there’s the parking issue.  there is NEVER any street parking.  then there’s all the one-way streets.  yes, the city is set up like a grid and really, the one-way streets go every other street in one direction, but i always manage to get all turned around.  slap a car full of on-the-way-to-drunkville passengers onto that package, and i’m kind of a wreck.

anyway, we make it down there unscathed, safely parked, and ready to party.  we get to the wristband pickup for the block party and it is PURE insanity.  There is this giant blob of people, none of who seem to be moving at all.  we sashay to the side, asking the security where the pre-paid line is.  he goes, “you’re looking at it.”  oh man.  so we squeezed back into the big mass of people and wait.  and wait.  anddddd wait.  there is no movement whatsoever for about 20 minutes.  we finally start inching forward after about 35 minutes, show our IDs about 4 times, and after another 20 minutes of waiting in the pre-paid ticket line, we are finally ready to party!

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

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!

Peru back on…?

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!

travel restrictions due to live vaccinations

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. 😦