Against Myself

I'm struggling.

I went to the doctor last year because the circulation in my fingers got wonky. I figured they'd tell me to wear gloves and keep warm. I didn't think it was anything big or important or whatever. Then all these blood tests were ordered and there was all this hoopla from my doctor about collagen vascular diseases. In fact, he eve made a diagnosis of Lupus right there. Of course, he called me later that day to say he isn't really familiar with Lupus and talked to a Rhuematologist who suggested more testing needed to be done before a diagnosis could be made.

More testing was done and I was told I don't have Lupus right this moment, but there is a chance I'll develop it. My achy hips, knees and wrists were chalked up to my overactive imagination. My fatigue and headaches were ignored and not even written down in the doctor's notes. The rash across my knuckles (something I've never ever had or even seen before!) was attributed to too frequent hand washing (although I wash my hands only about 4 times a day).

And although I just came in one day casually asking about my fingers - is this normal? - I left the two month experience of blood tests and scary diagnoses from this doctor feeling like I'd been the one who came in asking if I had Lupus when really I'd just had the sniffles or something.

I decided that this rural doctor wasn't taking me seriously and since he'd admitted he had no experience with these kinds of diseases (autoimmune diseases) I decided to wait until I got to NYC and find a doctor that knew what they were doing.

(FYI - an autoimmune disease happens when a person's immune system gets confused about which cells belong to itself and which cells are outside viruses and bacteria, and starts attacking it's own cells.)

After arriving in NYC I started experiencing a bunch of strange health-related things. I went to a local clinic and the doctor there really seems to listen and take me seriously. That is a huge relief.

I'm gathering up medical records as far back as I can to help my doctors try to figure out what's going on with me. And I'm trying to get health insurance so I can get more tests done. This part is exhausting. The damn person who can answer my questions about filling out the insurance paperwork hasn't returned my four calls over the last two weeks and the clock is ticking. The longer it takes me to turn in the paperwork, the longer it will be before I can get medical care. And with many illnesses, time can often be a huge factor in prevention major damage.

I've been reading up on autoimmune diseases and there are only a couple that really match what I'm experiencing. The rest do not. But it's scary. If I do have (or develop) one of these diseases it is necessary that they find it now.

It's hard for me to ask for help. I'm extremely self-reliant, independent, and (a bit embarassed to say) proud. I don't want anybody to think I'm weak or helpless or needy. And I certainly do not want to be treated that way. I don't want to be a burden to anyone. And I don't want anyone to think I'm just trying to get attention. This is not the kind of attention I seek (when I do seek attention).

Even though I know that having an illness isn't something to be embarassed about I actually feel a lot of embarassment around it. Especially right now when it's unclear exactly what the illness might be. And what if the doctors say there really is nothing wrong - then what does that mean about all these symptoms I'm experiencing? What the hell is causing them?

I'm torn between wanting to find out what is wrong, and just declaring that I'm okay. Such a declaration feels like denial, and sounds like something that will end up making me sicker. Trying to find out what is wrong feels like I'm a big cry baby who is taking things too seriously.

Emotionally, every option feels crappy because I'm scared.

brief episodes of vasospasm

previously on faerie moon... initial blood screenings came back indicating Lupus and Raynaud's (a vascular disease). further blood was drawn and we were waiting for the medical establishment to let us know the lowdown.

********

doc called this week. with the recent barrage of tests, only one came back positive (mRNA). doc consulted a rheumatologist, and they told him that unless my liver is having problems (which it apparently isn't), a positive mRNA is meaningless, thus i have Raynaud's Disease (aka primary Raynaud's).

this means there is no underlying cause (such as an autoimmune disease, etc.) however, there is no cure for Raynaud's, so please do not ask me to get you some ice cream from the freezer... you'll have to get it yourself.

you're smart, so you probably inferred that i do not have Lupus. there is still a 1 in 20 chance i will develop Lupus or another such disease (according to doc).

treatment: i'm supposed to avoid cold and stress.
um.... that's what i've been trying to do for years! another valid reason to move to mexico, and be spoon fed ice cream :)

back to the mRNA thingy...
for some reason im having some difficulty believing a positive mRNA (or whatever the test was) doesn't have significance or some kind of meaning. if it was unimportant/meaningless they wouldn't test for it, right? there must be SOME meaning. it must mean SOMETHING. even if it just means "your RNA says 'hello' and wishes you'd take a vacation" or "you eat too much bread and have allergies to flies" (which i just made up, so if you're trying to find out what your positive mRNA test means, thats not it!)

and the interweb is no help in finding the mRNA meaning. so, when i get to NYC (which is where im moving this summer), i'll have to get in touch with local medical researchers and such to find out if anyone can tell me. i have two weird fears...

1. our rural docs are idiots,
2. they know i dont have medical insurance and whatever is wrong is in pretty early stages and non-fatal so they aren't telling me i have something so that i'm not denied health insurance.

but that's just a tiny paranoid part of my brain that wonders such things. the rest of my brain is saying... "now, where do i get a cute pair of oven mitts to wear when i eat ice cream?" etsy? ... i see a business opportunity for someone...

hoping for false positives

so, this past autumn, at least once but maybe two or three times, my pointer finger and thumb on my right hand went white and numb (like when you're foot or hand falls asleep, only it was just part of my finger and part of my thumb) - the blood wasn't circulating.

i didn't know what to do - i tried warming them up, but they wouldn't get warm (it's way chilly inside and outside in HC), and i tried messing with my wrist and shoulder to see if maybe something was blocking the blood flow. i was a bit freaked out, but figured it wasn't anything to get too worked up about unless it became frequent.

in late january, this finger thing started happening all the time... almost daily... and now to fingers on both hands and to my toes! as you can imagine this terrified me. so i googled some combo of words or another and found a condition called Raynaud's. okay, no problem, i probably have this condition that makes my fingers go numb if they are too cold or i am stressed. its not fatal, it can be unexplained or have other non-fatal causes. cool, i can live with that.

then, a couple weeks ago i got this weird itchy rash across the knuckles on my right hand. they were tiny bumps like flea bites, but itched like mosquito bites. we don't have animals or mosquitos, so it wasn't bugs. i went to to doctor to have this checked out, along with the Raynaud's thingy. the doctor has me give some blood samples and a urine sample for testing.

a week later doc calls me and suggests i make an appointment to discuss the results. sure, whatever.

i make an appointment and doc tells me that this and that test are positive and my SED(?) is elevated and there is a strong possibility it's Lupus. Lupus. shit. i had no clue what this meant, except that a friend in high school once said his mom had Lupus. i just remember her not working and being at home and maybe a bit tired and secluded.

anyway, so doc calls a local rheumatologist and then calls me later that day to let me know i need to have a dozen more blood tests to find out what exactly is going on... could be a false positive (thus just Raynaud's Disease - primary Raynaud's), could be Lupus or another autoimmune disease (with Raynaud's Phenomenon - secondary Raynaud's).

so i read up on Lupus. it sure sounds like i have it, and it certaily explains a hell of a lot of ridiculous symptoms ive been dealing with for the last few years, and some ive been experiencing the last couple months.

last few years
fatigue
achy joints
arthritis
sun sensitivity
memory
depression

last couple months
Raynaud's
night sweats
skin rashes
fever

so... right now... im doing a great job of coping by spending my time wavering between denial and acceptance. it would be a relief to have Lupus - it means all these health issues have an explanation of some kind - i'm not just making them up. on the other hand - Lupus is not cool - people die from it. it is systemic, meaning it can attack all sorts of organs in your body, including the brain! i do not want to deal with kidney, lung, joint/bone, heart/blood, skin, or brain problems. and i don't want to take medication that has a host of side effects worst than the actual disease. i can't afford medication anyway - i don't have health insurance.

so, now, we wait. the blood results should be back next week. lets hope the first set were false positives and ive only got Raynaud's Disease.

the great spider relocation project

i am mad as hell.

about two weeks ago this gigantic spider moved into the hallway of our building. now, i know you're thinking that it's probably the size of a ladybug - but even DB says it's the biggest spider he's ever seen outside of a museum or fish tank. i concur - it's got a body the size of a large rock. clearly, this new occupant has caused some considerable anxiety for me.

the spider took up residence in the hallway, between our mailbox and our apartment door. we can see it from our bathroom window, we can see it when we stick our heads out our door and look down the hallway toward the mailboxes, and we can see it from the street.

my first thought was that it's too big to kill. it would be like killing a puppy - absolutely unthinkable. it probably has feelings and children and grandparents, not to mention a whole lot of blood and guts.

so, to avoid the spider, we started leaving out the back. this lasted for a few days until laziness overcame our fear of being ambushed by a spider the size of a rock. we could see that it was staying over to one side of the hallway and had built it's web there, so i decided to just sprint under the creature. i mean, it would have to really be after me, intentionally calculating my speed and location to drop on me. no problem, i figured, i can live with a giant spider, as long as it doesn't come inside.

as you can imagine, looking out my bathroom window and seeing a giant spider is not what i call relaxing. especially since none of our windows are truly sealed - so really, it could sneak in at any time. in fact, it might and we just don't know it. anyway, tired of running down the hallway at the risk of our neighbors catching me in flight, my next step was to begin bargaining with the spider.

"so, here's the deal. im a little uncomfortable with your location. i know you have every right to live here, and im not going to ask you to leave. but i would love to offer you, what i think, is a better location in the building. where you're at now, there is a lot of traffic and it's a bit breezy. that might be good for catching bugs, but i think there is a better place."

pointing down the hall toward the back of the building, i continue. "see that corner over there? that's the bike rack. barely anyone uses that corner at all, and it's much better shielded from the wind - yet it looks like it might just have more bug traffic. it could really be a prime spot. im not telling you that you have to go. im just bringing your attention to what might be a better deal. you don't have to decide now. just think it over."

next i started pondering what the lesson was in all of this. is it time to release this fear of spiders? am i just supposed to kill the damn thing? am i supposed to let it live and live in the hallway and just make due? what is this about? still uncertain of the lesson, i asked the faeries and angels to help the spider move over to the the bike rack area. intentioning has worked for all kinds of things ive wanted, naturally, it made sense that i could manifest a spider migration if i really wanted to. alas, that was nearly a week ago and it hasn't budged.

i think ive done a great job with this situation. the spider has stayed put, yet stayed near the wall - totally manageable for me. until yesterday.

yesterday it started moving around in it's web while we are trying to run under it. and today when i went to check the mail, the damn thing was smack in the center of the hallway. i can't run under a giant spider that is in the MIDDLE of the hallway! it has to be to one side or the other. and it's not like it was in the middle of the hallway all secure in it's web. it was kind of floating and dangling there from the light fixture. so, it's not like i could even just get over it and run.

so, in order to check the damn mail, which is less than 10 feet from my front door, i had to go out the back of the building, around to the front, and up the stairs - then back around to my apartment. and i did so, mumbling angrily about the spider.

so, yes. im mad as hell at this spider. im angry that it is dangling from the middle of my hallway when it knows im not willing to kill it. im angry that it refused my offer of a possibly better location. im angry that this awful bit of nature has taken up residence outside of my home and that i have to accommodate it's choice and compromise my own personal comfort.

and yes, i am completely aware that i have gone mad. im trying to keep in mind that the spider is not intentionally pissing me off. and that it's just hanging out doing it's spider thing. and i know, it's not the spider's fault that im afraid of it. it didn't make me afraid. then again, i don't recalling choosing this phobia either.

i don't want the spider dead. i want it to move elsewhere. it's too big for any human to attempt moving it. jesus, it's too big to even attempt to kill it. but if it doesn't move we either have to live with it or call the landlord and ask them to spray. dear mister president, at what point does a life become expendable? at what point is enough enough? at what point does my comfort as a human become more important than a spider's right to live in a hallway?

i don't want all the living creatures around the building to die! i don't want to be a murderer - i want to be life affirming! and really, i want someone to relocate this spider to a splendid spider paradise that isn't outside my apartment.

money changes everything

i must attend meditation tonight. it may be my only salvation from the stress that is causing my body to pull in, shortening the tendons and muscles all over me. arg.

meanwhile, im downloading cds onto my mac in preparation for my trip to seattle. which of course, is the source of my stress. not seattle in and of itself, but the trip.

money is tight at this very moment for 100 reasons - im working at the office less and wont be working the two weeks im in seattle, my subletter pooped out on me and i had to pay august rent at the fratty plus my mortgage, there were lots of birthdays and meals out this month, and i went over my cell minutes for the second month in a row. thats a big bunch of bucks to go out all at once.

of course, a money positive that i dont want to overlook is that im debt free (except my final student loan). LOM is refinancing the condo and im giving her my half in exchange for a small sum of money to pay off my loan for life coach training. i feel bad that i kind of wish for a little more... but thats another entry all together.

the other seattle-related stressor is that i talked to my mom the other day and she was in a bad mood b/c my brother was acting out. she was allowing his behavior to impact her. why does this stress me out? because i love them all. and there is nothing i can do to make life easier for them. and i wish my mom knew how to detach and not let other people impact her so much. but its hard to teach someone to do something they havent asked to learn without sounding preachy.

its funny b/c all of a sudden im feeling like my life in boston is too complicated. i think this is in part due to the money thing. i feel slightly overwhelmed and really need to refocus and recenter. i know that once the magazine with my advertizement hits the stands in september im going to be flooded with clients. its going to be perfect and everything happens for a reason. for example, perhaps having no expendable income during my seattle trip is intended so that i must stay put and relax rather than bustling around to here and there and trying to entertain people. what i really want to do is spend time with my mom.

the dry runs

we watched the cable tonight. it has been very very long since i just flipped channels without a particular destination in mind. this was made all the more clear by the shows playing.

did you know that john mcenroe has his own talk show? this was news to me. the guy is not a good tv personality. even i could do a better show than him.

observation: it seems that both liberals and conservatives can agree that yes, martha lied and it was wrong, but this witch hunt has been taken too far.

id never heard of scarborough country before, but i think i like the show. tonights topic was terrorist "dry runs" on US airplanes. i found this particularly stricking and i'll tell you why.

the story:
passengers and flight crew experienced a bit of a scare on a flight between detroit and LA when 14 serian men behaved "oddly" during the flight and landing.

the show interviewed two passengers from the flight as well as several security and terrorism experts from various agencies.

the passengers saw the men rise and congregate throughout the flight. and apparently the men rose in sync during landing while the "remain seated" sign was lit. (no, they did not break out in dance and song)

security and terrorism experts showed restraint in categorizing the unusual activity of the men as "terrorist" or not. but they did say they do believe terrorists are routinely conducting "dry runs" in america.

what do i think about this?

funny you should ask.

believe it or not, i had a similar experience on our return flight from london:
pre-boarding, before even seeing any other passengers at the gate, i experienced an intuitive hit that something was amis. note that i rarely experience discomfort about flying since i fly long distances quite frequently. plus im a fairly laid back person, optimistic and at ease - even in chaos and emergency situations.

amongst me i noticed frat boys, babies, teenagers, poorly- and well-dressed, and english-accented, and several middle eastern "looking" men aboard our flight. being sensitive to stereotyping and my role in perpetuating stereotypes, i made a note of my initial reactions to the people around me and then made an effort to move on and enjoy my goodie-bag, provided courtesy of our wonderful airline.

once we were in the air and able to move about the cabin, there were a noticible number of people up and about. already uneasy from my pre-flight intuition, i felt the need to look around. it seemed odd to me that people were up when the flight had only begun. on our flight to london there had been so few people out of their seats at the start of the flight. why so many today?

my next observation was that most of the folks out of their seats appeared to be middle eastern and in some instances they were just standing there, not bathroom bound. this made me extremely uncomfortable. i really wanted everyone to just sit down. i wondered if anyone else felt so uneasy or if i was merely over-reacting due to my intense exposure to our culture's anti-middle east and 9-11 propaganda.

id also like to note, again, my conscious concern about stereotyping - i have a degree in gender studies and another in cultural studies. i recognize my conditioning and bias. i know that no matter how much unlearning i do, there is still a lot of garbage in my head that peaks out, unwanted

with this in mind, i cant help but wonder... what was this?

was this a "dry run"? was it paranoia? after seeing this show and hearing about dozens of other flights with similar activity - activity that i have never experienced on any flight other pre- or post- 9/11 flight besides this one, i am overwhelmingly compelled to say it was a "dry run".

but im also compelled to ask the question: gee, maybe if we keep seeing groups of middle eastern folks traveling together and standing up in-flight to chat, congregate, etc. (even if the rising is syncronistic in the midst of landing...) maybe its a cultural thing. maybe this is "normal middle eastern in-flight behavior". what the hell do we know? its possible.

the fact remains, we are so filled with hateful propaganda i cant even begin to make any conclusions about this experience or topic. it only raises more and makes me wonder what the hell is going on around here?!?! what is reality and what is fiction created by our government/media?

a beautiful day in the neighborhood

It was such a beautiful day today. The sun shone warmly on our faces, making it impossible not to smile.

On our way out the door to meet new friends for dinner, our elderly neighbor VM was being escorted home by strangers. She has the best luck, I think. Nice people always seem to help her home.

LOM, another neighbor and I helped inch VM down the entry steps, into the elevator and into VMs apartment at the end of a long cooridor. I think, perhaps, she has lived in this unit for 40 years.

We left her on her couch, offering our phone numbers. The independent woman refused us. Yet when I looked into her eyes I saw such vulnerability. I was very moved by this.

Only a short time ago, as LOM and I were on our way to Cassava Lounge for our daily ration of tea and free internet, we saw a police officer at her door and decided we needed to investigate.

VMs nephew had called her but received no answer. He then called the police to check on her. The officer knocked on the door and listened for any kind of movement or response. Well, at least that's what I was listening for.

...Not a creature was stirring, not even a mouse...

We told him of the evenings earlier events, all that we knew of VM (which isn't a whole lot), and that there was no way she had enough strength to leave her unit alone again on this very day.

LOM and I went back to our apartment to search our condo records for information to see if we could find someone who might have a key to the unit so the officer wouldn't have to call the fire department to break down the door.

LOM, a trustee of the building, called the management emergency number to see if the company had a key to the unit. By the time they returned the call VM would have definately been dead... if she had been home.

The officer was able to get the door open... with a credit card. Glad to know VMs unit is a fortress of safety. I acted as his witness as we entered and searched the place for VM. She was nowhere to be found, thankfully. Of course, I'm assuming someone or some agency came to take her to the hospital for care and that she survived.