Monday, February 18, 2008

How I rank as a "Hoe" and "urgent & immediate" tests: hospital tomorrow!

What does a disability advocate do between badminton and fighting forces of darkness (vexing Fran and Triumph)? Well first I checked my sitemeter and found that I got a referral from (From the “Kink Girls” section). Nothing like knowing how you stand as a Hoe. And just a public service announcement to the guy who arrived here after searching for “naked lesbian horse sex”: please, there are free 24 hour therapists, just pick up a phone.

Of course, no Monday would be complete without a message from “The Specialist.” A clipped phone message saying I must show up at the hospital the morning of Feb 19th for two lung tests before another test which has been scheduled (but which I am not to be told the date or time of) can proceed. It turns out that this was from my Heart Specialist, who I have not seen since April 2007. I was a bit narked the way they just announce the appointment from a specialist I haven’t seen in almost a year when Cheryl (who was visiting) says, “Isn’t the 19th tomorrow?” Shit! It was. Less than 24 hours notice? I called Linda who called the specialist and apparently these two tests have been designated “urgent” and “immediate” though no one is telling me why. And the tests were going to take more than two hours. I called Linda again and asked, “What kind of Scan takes over an hour, are you sure they aren’t injecting something?” This is because I have extreme needle phobia and need to be sedated for anything involving a needle and put under for anything prolonged because I also have “invasive body phobia” which means having an IV in me gets me very….agitated (like thrashing and screaming agitated).

The test after this is the 20 minute liquid metal though the IV into the heart, which now, after seven months the heart specialists say they WILL get an anesthesiologist for. Turns out the two lung tests which I was given less than 24 hours notice for DOES have a needle involved (what part of NEEDLE phobia don’t they get?). But apparently these tests are super important, and super urgent only no one will say why. So, hey-ho, a ton a valium and a needle I will go (just typing that sentence increased my heart rate by 20 bpm and makes me feel sick in my stomach)!

So, tomorrow was SUPPOSED to be the day the tech support person was coming to install DRAGON naturally speaking 9 and help me set everything up. But now, I can’t do that until next week because I have medical appointments every day this week. Shit! I worked so hard for Dragon and now I have to delay it to get a needle? Anyway, my GP called last Friday to book me an emergency meeting for 40 minutes on Wednesday; but as I was booked on Wednesday so now it is Thursday. “What is it about?” I asked.

“It is an important information and planning session.” I was told.

What does that mean? I still feel like I have been called to the principal’s office.

For those who want some circle of life irony: in a long conversation on the phone I determined that my father has a series of rather serious neurological issues including: fatigue, brain fog, trembling of the left arm and hand, deadening of the left foot, dramatic loss of vision in 6-9 months, inability to stand for more than three minutes, etc. I methodically, on the phone went over every part of his body and what is it like now and what was it a year ago. If there was a change I said, “Write it down” until he had a list to show his doctor. He saw his doctor today who has immediately referred him to a neurologist: has referred him Dr. A., the same Neurologist who hasn’t returned any calls from my GP for 4.5 months. I have to wonder how long his condition would have continued unnoticed if I wasn’t so “expert” now in all the various possible neurological symptoms. I only have to hope that Dr. A. (the one who put me down for “Conversion/hysteria” and wasted 7 months of testing), sees and does a better job than with me. Bitter? Me? Nah.

I also got a call that a swallow/speech therapist would be coming on March 4th to watch me eat a meal. I guess the concept that I might be doing something on March 4th already is impossible. I told someone at boxing that I don’t know if I handle the hours of testing as it is like having a job. They said, “Yeah, but you don’t get paid!” Always a joy to share your problems with others.

I guess I am so tired that 14 months on and we are doing round… Eight? Ten? of DIAGNOSTIC testing. We all know what I have but I guess this tells people how it is affecting me or has spread. I am just tired of it; treat me or let me have a life where I can plan DOING something because every single day for as long as I can remember has been full of meetings or testing (or dental work – or both).

My care worker tried to cheer me up by saying, “Hey, at least it isn’t the Barium Enema this time!”

Yeah, feel SO much better now!


cheryl g. said...

It all just sucks. It would be nice if the doctors, specialists, therapists and case managers would work as a team to avoid loading your schedule and increasing your fatigue. Stupid system.

I'll be thinking about you today sis!

alphabitch said...

Barium enemas are kind of a pain in the ass, now that you mention it.

It does certainly suck that this has become a full-time gig. I feel sure you could think of better things to do.

yanub said...

I'm sure Dr. A will give your dad more consideration that he did you. After all, your dad has a Y chromosome, and thus isn't subject to "conversion disorders" or "hysteria."

Lene Andersen said...

I know that I'm a contrary, challenging and difficult patient (or so some doctors appear to think), but when I read this post about all the invasive and quite horrific-sounding medical diagnostic procedures (liquid metal through the heart???), I was wondering why you don't… well, refuse. Is there a point to these procedures? Might they result in treatment that will improve your quality of life? Or have they become terribly fascinated by your case and are just poking you for the hell of it?

PS good point about the barium enema.

Veralidaine said...

Does this mean that you'll be in a Jay-Z video next? Oooh, or 50 Cent! Hey, you could become a gangsta rapper yourself and pretend that you got shot 20 times while selling hoes and drugs! I hear they call that "street cred."

(Can you tell I know nothing at all about said "music" genre?)

kathz said...

I'd have liked to post a comment you could read before the tests - I'm probably too late but, just in case, good luck and best wishes.

Elizabeth McClung said...

Leaving for the tests now - still no clue as why they are "urgent" - why do I feel like a burger in a giant doctor/specialist assembly line?

elizabeth said...

By the time I am typing this, I hope you are done the worst of it and on your way home.

Lene Andersen said...

p.p.s. Hoes? Why are you a garden tool??

(Blame the codeine. This was very funny in my head)

rachelcreative said...

Good grief are there any tests left they can perform on you??

It does help if you know why. You would think they would have learnt this about you by know.

Hope it wasn't too horible.

Dawn Allenbach said...

Or an angiogram. Those f---ing SUCK!

I'm not needle phobic, but the idea of sending liquid metal through my heart ooks me out a might.

FridaWrites said...

I've been gone all day. Hope you're doing well, thinking of you.

Michael said...

Liquid Metal? Sounds like the name of a band. Like "Boiled in Lead" which was the name of the band -- 1 of the band members was Adam Stemple who is related to Jane Yolen...

Sorry, a little brain segue.

If you're already going to the hospital, is it feasible to get multiple appointments on a single day? I mean, if you're already going to be exhausted & in pain going in on one day... Or does that overdo it?

And no way to go to a different specialist than Dr. A.?


Michael said...

Maybe the planning and information session is to try to combine appointments?

Did the doctor tell you who was going to be there besides the two of you?

Neil said...

Hi team:

Just a guess but I'd bet our favourite Goth Girl is trying to sleep off the doctors' tender mercies, so let's all think positive thoughts for her.

At some point, doctors stop seeing the person and just see the disease; that's when I felt most like Beth; "we can't start the drug therapy for our kidney problem yet, because I don't have the computer that will let me join in the comparative survey." Switched specialistss REAL fast, I did!!

We all love you Beth! I hope tonight's not too bad for you.

Zen hugs.

Veralidaine said...

Yes, I definitely think someone needs to start a band called "Liquid Metal Through My Heart!"

Sending healing thoughts to Beth- I lit a candle for you in hopes that "common sense" lost and wandering somewhere out in the wide open scary world will see the light and find its way back to Canada and cause your doctors to start making sense. However, because rat lungs don't do well with wax vapors, the candle is in my bathroom. It smells like pumpkin, and my roommate broke the glass around the candle and hot wax spilled everywhere, but it's the thought that counts, right?

(I'm 100% serious here BTW- I really DID light a candle to help common sense find its way home and it really did drip wax all over my toilet and bathroom floors)

Elizabeth McClung said...

Cheryl: Yes, they do that at the Mayo but here it is all "My inch" and most doctors and such probably wouldn't notice that you have actually collapsed or as they did early on, when I passed out in one test, they put in my chair, and pushed it out of the room into the hall and that was it (she's gone, not my problem!).

Alphabitch: Well, I feel that if I became a paid test subject I would get tests like this AND get paid - true I wouldn't get better but since it is 14 months and they are still obsessed on "Diagnostics" I have little faith. I am sure the enemas are next (which is why I keep all bowel issues on the down/low)

Yanub: Yes, I guess by the time Men actually admit they can't see "too well" they are almost blind so Dr. A should give my dad more consideration than me - yes, I notice not a lot of males get labelled with "hysteria"

Lene: The specialists have actually sequenced the tests together so if I say NO (which I did to the liquid in the heart one until sedated), then the specialist simply refuses to see you or do any other tests (kind of a 7 year old strategy of "This is my ball and I'm going home!")

I seriously cannot find anyone to explain to me why any of these tests are being done except to rule out things which they already know (for instance, metal through heart is to rule out a hidden heart abnormality which is causing the heart problems - which we now know is caused by Autonomic Failure BUT since I have had a heart infarction since the test was ordered maybe NOW my heart does have a smashed up bit - but they still won't/can't fix it). I think doctor's have a very hard time going from "diagnostic till they die mode" to "Why not take your best shot and ACTUALLY TREAT ME!" mode. That was me shrieking the end bit, not them.

Veralidaine: I don't think being classified a "Hoe" automatically gets you on a music video - sorry, just on more pervs computers as a screen saver.

Kathz: Thanks for the best wishes!

Elizabeth: It was worse that I could believe, but it is done, Linda said the ventilation one showed my left lung was odd but will have to wait for the official results - I mean, I get shocked with Taser for an hour and the results are "Nerves: Abnormal in an abnormal way" - what, you zapped three limbs in four places and I get like 5 words? Thanks for the wishes.

Lene: I got to buy a bunch of hot pants in metallic colours now I think don't I?

Rachelcreative: Thank you for coming and the best wishes. It was pretty horrid, and I am sure there are a few tests left - as we wheeled down the hall, I would go, "Oh, say away from that department....nope, don't want to go in there!"

Dawn: Well guess what is third on the Tests upcoming list? Angiogram - that is the one where they thread in from your groin right? I do wonder sometimes how they did the test the first time, and how stoned the doctors were who thought it up.

Frida: Thanks, resting between stations of the cross, I mean between appointments.

Michael/Raccoon - it is very sensible, however each specialist prefers to use different locations and does not talk with each other so even though there are two hospital and several clinics you get a holter done here, blood work done at that hospital, then more blood work but done at a different clinic, - I don't know if even the hospital departments in the same wing talk to each other.

With about 10 neurologists left in a city of 300,000+, I think Dr. A is the one who is the "Best" for general neurology left in the city.

No, apparently with the GP meeting, the something something confidentiality act means that I cannot be told things over the phone relating to my health. So, I am clueless, I did call them to ask them to order a rush result on today's tests from the hospital.

Hey Neil - yeah, I think I am very secondary in the testing process - to the demands of the specialists, computers, receptionists, techs, etc.

Thanks for the best wishes, I hope tonight is better too and that my erratics go down and my arms stop aching from all the wierd positions I had them in today (no, not dirty, just read the latest blog).

Veralidaine: I really appreciate your thoughts and efforts, however, I wouldn't want you to say....end up homeless due to burning down your abode in attempts to send me good things (unless it is the post in which case, do NOT send a lit candle by post)

Veralidaine said...

Hahaha, no, we call fire hazards "everyday life" here in the rat-filled apartment of your crazy Colorado cousin. There's the time that someone (nobody's owned up yet) needed to use superglue and spilled it on the stove, and the most noxious smoke ever wafted up the instant the burner was later turned on... or the foster kitten who learned to turn on the stove... or the time the rats shredded the energy bill four months in a row and they cut off our electricity because, hey, out of sight out of mind, I thought the roomie had been payin it...

alphabitch said...

Michael: Boiled in Lead! OMG! 'Madman Mora Blues' came up on my music randomizer on the way home from work yesterday!

Dawn Allenbach said...

Yes, that's where they shoot dye into a groin artery. Was all warm going in and I thought, "This won't be so bad." Then the dye went up and around the small of my back and OH SWEET CREATOR MAKE THEM STOOOOOOOOOP!!! Oh, and then when they said they had to do it again because the pillow they had used to prop my knees had a metal ring in it and screwed up their x-rays . . . they had to dope me with Valium that time (and they didn't give me enough).