My ticket out of 'Pain World'

I have heard of this strange and wondrous place filled with colour, motion, and all sorts of complex variations: I think they call it, ‘outside’. I want to visit there sometime soon!

I have been offline, working through some drug reactions of my new medications. One is for Edema and the other for pain. It seems I kinda have a GP, but like a long distance love affair, we can only see each other for short periods every couple weeks. And we both have several years to catch up on. I thought if he didn’t drop me by the third meeting, then, next meeting, I would finally stop feeling ill and not sleeping the night before going to see him (is that 'love' or 'trauma triggers'?)

I played it cool and waited at least sixty seconds maybe even seventy before asking, “So, you’ve read my file, do you think I’m a nut case?”

I like to start subtle and then slowly work towards what I want to know.

He had to leave early, and we weren’t really understanding each other as he was asking about ‘Why not see this person?” Because many doctors have done the ‘its your fault’ or ‘I can’t do anything’ route I thought he was thinking I had the disease that person specialized in. But instead, he had specialist who didn’t seem to have much concrete info, and if a name showed up in the file, he wanted to know if we had gone and where the report was. Locally he is pretty hooked up, but also realizes that there are few doctors and so his questions were about ‘Where can I refer you to get some treatment instead of being handed off?”

Since I had never had a GP who thought that way, I thought we were back at ‘I need to find the exact disease or I don’t treat at all’ that so many GP’s (about 15) have had. That’s even what they say when they turn me down with “I haven’t treated this disease.”

So I asked, “Do you think I have a disease?” (I know, I am there with $30,000 in medical equipment because I have odd hobbies?)

Yes. Later he said, “You have a rare disease so it may be a problem to find someone.” The impression was that he wanted to find someone to oversee as a specialist, to administer treatment, not test. I thought we wanted proof, so I talked science. But no, he didn’t want to talk about nerve conduction comparisons, or blood tests, but about who would give treatment. I though the ‘dancing doctor’ we saw in the ER the night I had the bad seizure cycle might. He knew him, he said he will refer me, even though the neurologist is retired.

He wanted to know the issues. Was the pain control enough? I had the patch for two weeks and it wasn’t enough, so we went to two. That was better but not enough. So now I am three of the three day patches of Fentynal. Linda explained how two patches weren’t enough. I was saying it was a LOT better, “I don’t wake up with my teeth clenched, and have them clenched all day, I don’t have to do this…” and showed him the hunched over position, fists balled and shaking a little that I can be in for up to two hours. When I talk he looked at me, and smiled a little about the teeth clenching, and nodded.

He listened to Linda and I for a couple minutes, believed what we said and increased the dose of a regulated narcotic.

He didn’t: Turn to Linda to ask if I was telling the truth (most specialist and doctors), say that maybe I should see a pain specialist (in nine months), nod and do nothing, ask me what illegal drugs I take (most GP’s I’ve had), give me an HIV and Hep-C test (most GP’s, sometimes monthly). He believed. He got it.

Pain makes the world into 'Pain World' which looks like a very different place. In pain world having fishing hooks dug into the bone, spikes and barbed wire turned inward are just part of breathing: having someone put a machete into your spine or spears in your joints simply means it is afternoon. He understood, better than I, how much I needed out of 'Pain World'.

I think that he works almost exclusively with palliative patients helps him understand what pain can do. He never saw me or treated me as an addict or having a mental problem. I had physical problems and he was going to help fix those, a little at a time while he arranged for treatment and assessment of my condition to improve quality of life and prolong life. His attitude seems to be: Okay, you're ill,really ill, so what do we do to improve your life?

He’s seen the results and he gets that other specialist wouldn’t have experience with it, and nodded when we told him other GP’s said, “I just don’t know what to do.” And dropped me as a patient. He said that I have a very rare disease and we have to hope there is someone who can help. He said that it may come down to the Mayo Clinic. He was serious. I said, “I don’t think that will be funded by BC medical.” He knows Linda is unemployed and he is going to try to get some of our pain pills under ‘Pharmacare’ but said, with the weary voice of someone who had done it far too many times, “I send it in, they send it back, it takes hours, but yes, we have to try.” A Doctor who was leaving us to go do a house call, who cares.

I have some renewals, new patches and a new medication which is making me dizzy and nauseous, which keeps me staying still or in bed a bit more. Over time, it is meant to take off the edema. He didn’t question, he just wrote the prescription. As Linda said later, “He works with terminal patients…he’s seen lots of Edema.”

Plus, with my new found ‘less pain’ I have been sleeping for the first time in a long time, right through the night. First eight hour sleep in years maybe, not woken by the pain that brings me to semi-consciousness, then full consciousness at least three times a night. The down side is the ‘patch’ is different for each person and mine seems to run out on day three (when I DID wake this morning with my teeth clenched). I think having such a high resting heart rate (now usually around 100-105 beats per minute) might be accelerating the absorbing of the pain medication.

Emotionally, I am still scared: can’t quite let myself hope entirely, commit emotionally, so I am stuck waiting. Yes, he has done more to improve my life in six weeks than all the doctors in the last two years. But, I am wanting to believe in him, awaiting some sort of ‘normal’ where I just go see him on routine visits and refills, and I get treatment and we have some sort of progression evaluation. But I’ve been dropped so often, after believing in so many, it is hard to totally commit (“Next time,” I tell myself, “If he talks about longer term treatment plans then ‘next time’ I will start telling people I have a GP again.”)

Also with the decreased pain, I have been pushing myself, and did that too much over the weekend, stealing sleep and working hard, using the pain free state to push on until my body just collapsed. When that is how I end up taking my nap three days in a row, I think, “Maybe I should stick to my schedule instead….”

Pain is thy name: Kick-Ass, EFM as Superhero, & the sixth painkiller (and surprise good news)

News of the Year: I have a possible GP.So far he has passed five of the six tests already. He was recommended by the Hospice and Palliative Society for me, and while he is NOT taking patients, that recommendation got an initial meet and greet. I didn’t want to blog about it because the number of GP’s who have turned me down have been around 30, and another 10 or so specialist, so while I was nervous enough not to sleep, I wasn’t going to announce it as good news. Except:

1) Met with me, and didn’t immediately say that this was too complex, too thick a file. He did say he did mostly cancer patients and had not had experience with my condition….but he would take me.

Actually seems to listen to me and believe what I say, instead of immediately putting me in the ‘hysterical female’ grouping (come closer, I can be a LOT more hysterical!)
2) He met with me a second time, for 45 minutes and gets that doing a meeting like that puts me out for a day, also after disclosure of orientation (Him: 'so, who do you have sex with? Me: Her! (as often as possible, honest!) Him: So, not a lot of need for a pap smears for HPV then) and that dread initial diagnosis of ‘conversion disorder’ he didn’t drop me due to ‘religious belief’ or ‘not a good fit’ Oh, no, I am starting to feel...what is this feeling again? I think it is called, Hope.
3) Linda described to him about the pain of this week including moaning in sleep and he PRESCRIPED A PAINKILLER! Wha? Prescribe something for a problem? Does this doctor know how to be a GP in Victoria?

Seriously, he specifically prescribed a Fentanyl patch (lowest dose) which has the advantages of: releases for 3 days, can be applied even if I am in too much pain/autonomic failure to swallow or understand what is going on around me. He said “If you don’t notice any effect, we will increase the dosage”: after so, so many doctors have refused to help with pain due to having to use the ‘triplicate’ form, which means one goes to government. So, after going to the US hospital, their evaluation was ‘pain control was the number one priority’, and that was over two years ago. And now, I am PAST the huge 'three page form' wall and moving toward real pain control.

Fentanyl is 100 times more powerful a painkiller than morphine. Before you freak, that is dependant on the person, like for me, it might only be 95 times more powerful than morphine. Yeah, that was the joke.

But, Fentanyl was recommended to me because it has the patch AND can be prescribed in very small dosages, then raised as needed. I am now taking six different pain killers daily (good thing I have those six fingers on one hand, to count them!), and this Fentanyl is the third opiate/synthetic opiate. But if it actually makes the pain go away, that will so improve my quality of life. And with the better quality of life, I will be able to smile and joke (when you are clenching your jaw in pain, the funny goes away), my loving and caring spirit will emerge again to woo children and wildlife with its pure innocence.Or something like that.

So the doctor has seen me twice and is already working to improve my quality of life. Crazy! Is this doctor REALLY living in Victoria?

4) Plus he is talking about calling the Neurologist and seeing what type of mediciations, like IVIG or others which he can administer to stabilize my condition (I know, after over 100 tests from over a dozen doctors and none working to do that at all, I am in shock). It took over a year of constant trying to get synthroid and now, we have Fentanyl.

5) My concern is that some specialist have not told the truth in their letters (in person they say, ‘There is no treatment to offer you’, while the letter says, ‘Client was offered treatment and declined’ – odd that even specialists can do revisionist history if actions makes THEM look bad). I am worried that combined with what they might say on the phone will make it so the next time I see him there is the ‘I don’t think I am the best doctor for your needs’ (regardless that the neurologists haven’t seen me in over 2 years and as I said to him, “It is REALLY hard to be B-12, and Vitamin D deficient by ‘conversion disorder’)

He uses the UN standard, NOT the ‘minimum Canadian standard’ – Canada has, due to socialized medicine, some of the lowest ‘minimum standards’ in the world.
For example, when the UN goes to Sub-Saharan African countries they use a standard of Red Blood Cell count to declare someone ‘anemic’ and treat them. While the same person, in Canada, they are not low enough to be considered anemic,. Plus, even if they are the bottom or below a 'health standard' like being anemic, as Cool Aide demonstrated, many homeless people show up as anemic but are not treated at all.

B-12, which I have been low in, has never really concerned doctors, I have never been ordered to supplement OR get a shot immediately until NOW. In Japan, the lowest amount of acceptable B-12 (which causes nerve damage, sleep problems, and nerve pain), has been raised from 200 /pg/ml to 550 pg ml in 1988 while in the US 350 pg/ml is the ‘lowest acceptable’ level as even those at 500 pg/ml have been found to be ‘deficient’. Long term deficiency results in permanent destruction of the nerve stem in the spinal column. In Canada, you are not deficient until you are under 150 pg/ml. My father was at 39 pg/ml before he was treated, and I was in the low 80’s. I have been frequently been at 139-155 without recommendation for treatment (like over a year in that range with doctors not concerned in Victoria).

My doctor said that I was to take B-12 either sublingually daily (maybe more than once a day) or shots until I am at a MINIMUM of 250 pg/ml. Also, he said Vitamin D involves nerve pain and use and I am deficient in that and increased the prescription subliment by 50-100%. I am totally stunned.

I think this is called, ‘proactive doctoring’ but I’m not sure as I've not seen it in this city.

6) The GP said he liked me and that I was a ‘character’ or had ‘character’ or ‘would make him lose hair’, I one or more of those three.Plus he does HOUSE CALLS and understands that Linda will need to come in for me if I am too ill. Wow. Wow.

I dragged myself up to boxing yesterday and did my exercise, I was too sick to go the week before so I did a double effort to sweat: my sit-ups, push ups, and then worked the whole time on the heavy bag, doing speed jabs,
speed hooks and then combinations, where you use speed and accuracy. I did 4 punch combos, 5 punch combos (15 then a two second break, then back again, then two seconds off, then 15 more, for three minutes), four of my eight punch combos, then two of the 11 or 12 punch combos, doing each three times, and finishing with a 16 punch combination.

I felt exhausted but was sweating and endorphins made me smile.
All is great until the endorphins run out sometime around 4:00 am, the pain hit! I had put on the patch at 11:00 pm, but it takes 12 hours to be absorbed and right now, it isn’t doing much. So some bed time for me and the plushies.If I survive the next day or two, I will be able to see out of both eyes again, I am sure.

Last night, I watched ‘Kick-Ass’, a film based on the comic by Mark Millar and Steve McNiven. There is an excellent documentary in the special features about creating and inking a comic showing these two. The film was picked up by Linda and had the highest IMDB rating I had seen. It was amazing! The idea is about a guy named Dave, 16, whose only talent seems to be his invisibility to girls, and his crush on Katie, the girl with the locker just down from him. As he goes to hang in his local comic store, Atomic Comics, he asks his two friends, “Why is it that no one is a superheo? I mean, why do people just do nothing?” So while buying online he adds a green spandex suit to his basket. Thankfully in New York, you can hang around in a green suit with two baton’s in a holder on your back and not have anyone notice you. He did ‘patrol’, he did a lot of posing in front of his mirror but nothing really happened. That is until the two guys who mugged him were stealing a car, and he stood up to them.

They totally whooped on Dave, then as he staggered away, he was hit by a car and ended up in hospital. In the ambulance he begged the EMT not to mention his costume (cut away) to anyone. He slowly recovers (his statement that now many of his bones have titanium rod and plate reinforcements was “Cool, just like Wolverine!”). Dave also has neuropathy damage and he can’t feel pain that much. Or as he puts it, “My super power is a greater tolerance for being beaten”
Once Dave makes it out of the hospital, the good news is that Katie now is totally talking to him, and wants to be friends. This sudden break through of ‘cool’ is dashed when his friends tells him, “Oh yeah, um, well everyone knows about how you were found naked after some guys had their way with you, so um, the whole school thinks you’re gay.” And Katie gushes, “I’ve always dreamt about having one of ‘you’ to talk to……not that I think all of ‘you’ are the same or anything.” A choice of hanging with Katie as her new gay BFF or telling her the truth has him soon getting loans of Queer as Folk and doing ‘sleepover pedicures’.

Meanwhile, looking for a lost kitten, he falls on some guys after another guy. And decides to defend the guy beaten on the ground against these three full adults. He yells at a kid his age to call 911. The Kid runs to find the largest group his age and shouts about a fight instead, and everyone goes to video it. His ‘stand’ ends up on Youtube and goes viral. Suddenly, ‘Kick-Ass’ (his name for his superhero) is a real deal superhero.

Enter Nicolas Cage as a rather psychotic father, and his even more psychotic daughter Mindy (maybe the whole, ‘never going to school and only training to kill people’ doesn’t help). We meet them as Nicholas Cage is teaching 11 year old Mindy how to ‘take a bullet’ by shooting her. It was pretty much love at first sight for me. They are ‘Big Daddy’ and “Hit Girl” (she has purple hair and an outfit to match including a plaid school skirt and purple coloured knife holder).
She is also a totally lethal machine, who flips, shoots, knifes, and garrotes bad guys. “Kick Ass” scrambling away in green is like Amateur Hour on the Gong Show compared to her. Though sometimes, particularly with Hit Girl, they remind you that she IS 10 or so (he is only 16),reminded to you when a bad guy actually hits her and knocks her almost out, being all of 58 lbs and all.
You will have to rent or see the film for the rest.

The author, Mark, a Scot from a small coastal town had at 15 with his friend listed ‘Be a super-hero’ as a career choice and done weights and ‘patrolled’ his town. As he said, “It was a small village, and if we were LUCKY there were TWO town drunks!” But his comic, based on a lot of his experiences and fantasies, hit a cord and went right away to number one, selling out three printings. One of his instructions, besides the plotting was for his artist to have NO BLACK.

In Comics, from 1930’s onward everything was in white, with characters drawn on. However, in the late 1980s’ Frank Miller revolutionized ‘Graphic Novels’ by reversing it and having a dark black background in Dark Knight with everything drawn on THAT. Soon every one would follow. Now, Mark Millar wanted to do an entire comic with NO BLACK. What that did was a) make his comic look very different to other comics and b) make his other colours stand out. Even his publisher didn’t notice what it was as they told him after three issues, “Your colours are amazing, and your comic looks so DIFFERENT.”

Mark Millar metions in passing that he had ‘worked with Steve on a Wolverine type story.’ That got me into late night research as what story could it be? It turned out to be this year’s eight Eisner award nominations Old Man Logan, which I had on my wishlist until I found one on sale on ebay. Now the book, just released, “Kick-Ass” is on the top of my wish list! So, this is good year for Mark, a movie BEFORE the comic release run was finished AND Eisner Nominations for his last project.

So, go, go the red haze of pain: and if the ability to absorb pain can be a ‘power’ for a superhero, that seems like I totally up for the job then doesn’t it? Go EFM and her flying wheelchair of justice!

Other surprise good news that I won a review writing competition, and won two signed yaoi manga and a package. Woot! See, it totally pays off, spend all money on manga, and eventually get some free! Yeah, total sense - happy yaoi Halloween!
Also, I am having another/final ebay sale for the next two weeks of rare and out of print manga, or complete manga runs, including new ones. This is to a) raise some money for medicine/pain killers and b) put some savings away so I can raise money so that Linda and I can both go to Sakura-Con if I am here in the Spring. I recommend, Jyo-oh-Sei, which took 10 years to write, each book is 400+ pages and was so popular they made an anime (also a hit) out of it. It has two twins who are, without warning sent from the elite satellite station to the ‘Beast Planet’ – an unofficial planet where people are sent to die, since the death penalty is illegal. Only, people have lived, in this the EXTREME world where plants at the top of the species, and now these two brothers have to learn to as well, or die. Goong 1-9 is about, ‘What if Korean still had a monarchy’ and the story is loosely based on the UK (if Charles and Diana were teens), a girl is wed into this family, not fitting in, a marriage of political arrangement – modern but using historical Korean terms and monarchy tradition. While Les Bijoux is a great gender bender of a two spirited son, who has vowed revenge on the ruler who killed his parents. As a male, he works toward that end, however the ruler keeps seeing them when they are a woman, and falls helpless in love, and she is starting to feel something back. What to do when the other half of yourself is trying to plot revenge against your lover? Tough one! Another 50+ listing to go.

There is also a new post over at the postcard project, please check it out (comments here and there ALWAYS appreciated) – thanks for all the comments on my last post, it really made me feel better about opening up on my conditions that are most likely to exclude me futher from people.

Linda Fired? No insurance? A New GP meeting and more health risks.

Um, please stay tuned for further developments. Sunday I was very, very, very (throw in as many very’s as you need) ill in the evening Sunday, and was not able to get to bed until 11 a.m. the following day which made Monday morning when I woke up - about 11:30 pm. Suck to be me (short day!).

I have been trying to get a GP, but so has everyone else, and so it is now more like applying for a job where you list a medical history and conditions, apply and if you get contacted in a few weeks, you go for a ‘meet and greet’. I finally got one of these ‘meet and greets’ – the only one so far since the last ‘I’m not YOUR doctor” episode. There was multi-page follow up paperwork which included (I do not jest) “What do you consider your greatest accomplishment” and “What aspect of your life do you wish to improve the most?” I put, "Gain access to health care."

The tragic part is that the GP and I got on very well, including the appreciation (instead of being threatened) by the proactive stance I had taken toward trying to treat my illness and prolong my lifespan. The heart of the Doctor said yes, logic said no. It was their first year in practice, and they had a completely wheelchair friendly office (including ramps and parking spaces), but not enough experience with the specialist in town or contacts with those out of town to be able to assist me, or take responsibility of my life-span.

What made this more difficult is that just before meeting the GP, Linda and I had been informed that due to the budget, the government was reducing jobs and that could include her. So yes, people are going to be laid off, anyone is up for the axe and we won't know until....sometimes soon. The cost of my pain medication alone is near our rent if we don’t have insurance. So this was a major concern. I begged the GP, “Any GP is better than no GP, how about I share practice, or just a provisional time…” It had to be no.

I am a female who, the GP determined, in now incapable of working any hours in a job, is COMPLETELY dependant on Linda (yet still can't qualify for social assistance); and that insurance and income is now threatened. Not only that, that means the death benefits to bury me, and make sure Linda is able to pay back any debts incurred while paying for equipment or other costs would be gone, as I have some death benefits not requiring a doctor’s examination. I doubt any other insurance would take me on, much less pay for the levels that the current insurance is paying. Since I am not sure if there is a system in my body that hasn’t been affected and thus a ‘pre-existing’ condition.

To add to the general joy, the company across the street are hammering, the ‘we will knock down the house on X date” was two months off but the ‘we will build Sept/Oct’ is right on: they are already working doing hammering (yes, the building permit isn’t through yet but for developers things like LAWS don’t apply) and have and are using a earth mover (digging permit not through yet either according to city hall). They knocked down 4 houses and are building 16 in the space of the four houses. One of the houses was supposed to be designated a Heritage house as it was built by a famous architect over 100 years ago. The developer told the city council the house could not be repaired or moved and even if it could, that the ‘green houses’ he was building would be the equivalent in positive value to the city as a heritage house. Gosh, I wish I had thought up things like that when I was a kid: “Mom and Dad, the school night I am spending out at a party will be the collective value of doing my homework and going to bed by the socializing element.” That kinda sounds like BS. The more bad news is that it will be construction for 14 months. And with my health, I simply don’t know if that kind of assault is possible. The company owner who manages 80 apartments promised long ago to let us know of ANY two bedrooms and we would get first priority. That seems to have slipped his mind as well. Loverly.

So I am off to get refills on the prescription medicine that I don’t know if I will be able to afford later on. It is a WEE tense here. Since I had nightmares, limited sleep last night and my heart rate upon waking was both erratic and 120 beats per minute (75 is average of me: 60 should be average for you).

Oh and my veins have withdrawn to the point where getting blood is going to be difficult. Let’s just say that it is very, very hard for me to bruise as my skin doesn’t have any blood IN IT to be broken, or the next quarter inch down. And don’t ask how I know that.

The weather forcast: High levels of fear to terror for the near future, followed by sounds of hammering (thwack, thwack, thwack) for the rest of the day, if not the next 500 days. The reason we didn’t move is that a) there is not a street around here that is not going to have major construction in the next while near it and b) I was much healthier then. We thought I could survive, with sound plugs on the windows, and headphones like they use to guide planes. Except summer is still going and we need the air conditioners in each room. That lets a direct line of sound in. Also I am much, much weaker, and being bedridden with the sound of construction stopping any sleep or rest….

Arg! Too many things out of control. Stay tuned for further developments.

I have a corset, red panties & pose threat to population...also have a GP and the H word (maybe).

Am I in good health? No, actually I am probably in the worst health for a good long while. Cheryl and Linda are rather pissed at me because I keep passing out. I am not sure why they are pissed about that; it is not like I PLAN it. They say something about how I keep talking or doing things until I pass out. Well, sure, who wouldn’t? I mean, if my body gave me a timetable of being unconscious I could get a lot better in scheduling so I was doing stuff and then simply lying waiting for passing out, reading a manga maybe. I think the idea is that I should be reading manga and resting. But there is too much to DO!

I mean, while yes, I do have to go to Booth Gardner, I got my new corset by post today and it is medium junior and a little bit MORE medium (aka, smaller) than the last one I got. So did it fit? Well, the joys of the corset and the female form is that with enough will power it always fits (Cheryl said, ‘well, there are just ribs, I guess it isn’t going to fit’ – I thought, “That’s what you think” – two minutes later it was on). It looks very shapely if I may say so myself, although having a necklace of smelling salts might be prudent. Haha – I brought extra corsets in case I need to change!

Oh, sorry the big news is that I, Dr. Elizabeth McClung was TOTALLY WRONG. Yes, and it has give me a four letter response. After I talked to the guy (Dr. I.) who thought that female doctors’ were the reason (besides Jubilee being the worse hospital in Canada – his statement not mine!) health care here is crap for the chronic and terminal. Dr. I, said OF COURSE I had Lichen Sclerosis. However he was too busy to look. So I had to come back the next morning to the new walk in clinic in the village to see Dr. J. I told her I had Lichen Sclerosis and she said, “No you don’t.” I said, “Well, it might be Lichen Planus.” And she she, no, that is actually more common here, and she indicated the front of the shin. Of course, I am having this conversation sitting up facing her, with my Victoria Secret RED panties (go out in style!) at my ankles. She said, there is a very distinct discharge with Lichen Sclerosis.

I told her I HAVE a discharge, I have anemia, I have Progressive Anemia, I have a thyroid problem, I have an auto-immune disease ergo, Lichen S.

She said, “No, what you have is a severe hormone imbalance, and the discharge you are talking about, that brown on, it is dried blood because your skin is membrane here and bleeding out and your labia are fused and anytime you stress it (like say, taking a dump) you bleed (combined with pus and other fun stuff maybe dead white blood cells).

I said, “Oh.”

She said, “You have a severe deficiency in estrogen.” I explained I was already dealing with imbalance with pills.

She prescribed a cream. And I went, “OHHHHH!” and sank my head in my hands. She took this as a form of humility I think. And started explaining something. Actually, I was going, “Why have I been so STUPID!” (yes, it is possible to be a genius, catgirl or BOTH and still blow it!) I have been asking myself how I could be losing 1/3rd my weight while eating while Linda does and just sitting there, no exercise. And when you add in the hypothryrodism…..? Except I need many probiotics to try and absorb nutrients and I have been wondering if things are being broken down in the stomach at all. Wondering what if all is being absorbed. And I have been taking my estrogen supplements…orally! And due to Dr. Jimmy, no checking of hormone levels in like a year or more. Get the “OH!!!” Yes, I have a deficency and the hormones can’t get there. A cream is better, a cream solves the problem!

I asked her if the skin would thicken up. She said she believed so. I asked what about my hair, it was so thin and falling out in clumps. She said to wait and see. Here I had been complaining to Linda that with my breasts reduced in size I was feeling…..well sexless. I had been having dreams like that. With last recording of Androgen at 0.0 and two doctors looking at me going, “You have a severe hormone imbalance, and a estrogen deficiency.” It makes sense. I will put on the cream. I will see what happens. I have hope.

Of course, there is a problem that with adding all sorts of hormones to me, there could be a slight period of adjustment, where I have imbalance the other way. We have to hope for the local population that this does NOT happen. They need to get the correct level quickly for everyone’s safety!

For me Booth Gardner had three options, a) they tell me that it is all in my head (hey, I’m female: we must have tremendous brains for all the things we can have in our head from M.S. to CFS/M.E. and Fibro!), b) They tell me I am going to die or c) they tell me they don’t know. What this has made me realize is that I do NOT know ALL of the options. That as much as I like to think I have worked out all the options and that I am stuck here in a medical tower, far from help. So maybe that isn’t true (the trained crows who do my bidding are true however!).

I realized that like this woman who I asked, “Why do you KNOW this.” She said quite reasonably, “Well, I have seen Lichen S. and Lichen P and this estrogen deficiency (usually in the very young, the adolescent and the older but still, very distinctive). I told her that was the same grouping for Lichen S. She outlined the difference she had seen in her 30 years of practice in Portland, OR. Oh. Okay. Wait, Portland, like the USA? I asked her if she believe in treatment based medicine? She didn’t know what I was talking about.

I told her I had hypothyroidism but I couldn’t get a referral in order to…she interrupted, “Oh, I can give you syn-thyoid.”

“You don’t need to refer me?”

“No, why would I, vagina’s and thyroids I am very good at!” She wasn’t so great on complex autoimmune diseases, however the owner, Mark, who works in Vancouver and is over once a week is VERY interested as is an older woman doctor who seems to have a fine point focus and we spent 20 minutes talking details and she left saying, “I could talk about this forever, but I have patients.” They renew prescriptions. The Admin person help Linda get the MRI recording of my brain for Booth Gardner. They invited me to be a patient of theirs. I signed up. I now have team of 4 GP’s to return to.

But more important, I realized, as I talked to this very competent woman who worked in Portland that the doctors at Booth Gardner could come up with an EQUALLY logical and reasonable explanation that I have simply NOT THOUGHT OF. Of course, I am on a rebreather mask, and have 70% heart erratics now both showing central autonomic function, I also can’t feel my feet and have loss of nerves in my hands and have overheated 5 times today showing peripheral nerve damage. Even MSA people go, “How is that possible?” I don’t know!! I just live the life. They say autonomic failure and you have either cancer or the PAF/MSA group. But see, I could go in there and they could tell me something logical I never thought, like for example that I am B-12 sensitive, and my initial B-12 deficiency created pernicious anemia which destroyed peripheral nervous systems. And now, anything like my current anemia triggers it to restart, which is why I am losing more now. That is logical and something I never thought of; and they could say they have seen it X number of times. And maybe they have an explanation for the central autonomic failure. I don’t know. But maybe a treatment and maybe I will come home and not feel like a little pawn on someone’s large chessboard where I was the medical pawn everyone was desperately trying to forfeit.

Maybe having that four letter word: hope. Maybe it will make it all the harder if they say what I pretty sure what they will say. But I am not just going now for pain control (my Portland GP can do that), or other things that a GP SHOULD be able to do. Either way, I will leave there knowing my future. And I DO have a future; 8 I am going to Sakura-con, I am going to do the Times Colonist 10K, even if it takes me 2 hours, I WILL do it. Because I have a future; even if it is counted in weeks or days; months maybe, it is STILL a future. But now I have hope: hope that I will for once be ORDINARY, that I will be the ‘easy case’ because they know what to do. And I will have an anniversary of this day; the day my future grew, like a sunflower, high to the sun.

System down: escaped the country

Hey, after a call at 10:30 am for Linda to tell me that my GP was holding me pain medication renewal hostage until I came in so he could "tell me his thoughts" (turns out his thoughts were that the seizure I had in his office he felt was a "pseudo-seizure" which did not negate the fact that the neurologists still state I have progressive neuropathy, progressive idiopathic anemia, at least one but probably two auto-immune diseases and autonomic failure, and that I am in mind blowing pain).

Well, those promises for the pain specialist? It turns out he didn't make them, though he TALKED to the pain specialist who could get me in within a month, but since June, he had not made the referrals, both I AND the hospital has requested: for pain and epilepsy. Why. Because I had not obeyed him and come back the following week and had cancelled that appointment. I was in the hospital, that is why I missed the appointment (or I was in home after the hospital unable to move).

So it turns out that becuase he couldn't give me 'his opinion' I was in pain, and still am in pain, I fall asleep while in pain, and I wake because the pain breaks through my consciousness. And I was that way for months, because.......

I don't know, this is the same doctor who today I showed my blue fingertips to and he replied, "I'm not impressed!" (Guess what doc, I'm not a circus act!). When I started attacking him, as in, when his fellow doctors showed an ailment did he say to them, "I'm not impressed" he marched tight lipped out of the room and returned with an pulse oximeter.

"It's 72%" he said grudgingly and then dropped the oximeter on the counter and continued on with how my being in pain was MY fault because if I had only done what he had expected of me, to return and see him, then those referrals would have been made.

"Put it in your computer." I said. I think he was confused about what, "The 72%, put it in your computer." You see, now I can demand a referral to a respirologist; I may be furious but I am not stupid.

Anyway, Linda and I decided this town and its hell of Beacon, GP's, doctors and the rest was SO bad, that Port Angeles with the hairy bearded men who carry off women "'cause they pretty!" is actually the LESSER of two evils. Plus I can go to the Hello Kitty store and convince more 16 year olds to take their DADDY to a Hello Kitty Bondage Hotel (read the last entry on Port Angeles). Yeah, good plan.

I have been working on some postcards, so I will post them early, here are some of those going out. I take the pictures becuase once I mail them, there is no way for me to remember what they look like. I hope you enjoy them too.

I have Lyrica, and why men shouldn't try and FORCE me into silence.

I have Lyrica. I did not get it from my GP. Linda talked to him, he wasn’t ready to prescribe anything but if I wrote him a paper, including a list of all the pain I felt, he ‘might’ be able to talk to the pain specialist, sometime next week or the week after.. When Linda told me this over the phone this afternoon, I was in so much pain I didn’t know whether to scream or cry. I did a bit of both.

I called the hospital and asked them what should I do, was ER the place for me? They said that if I was in that much pain, then I NEEDED to be treated. No disagreement here. She gave me a number for the head RN. I called and she listened to me and we talked and she told me to go to a walk-in clinic, that some were open until 9:00 pm tonight, that she could tell over the phone I needed pain control NOW. And no, I didn't sound like a junkie but a common condition, needing pain control while waiting for a pain specialist. She said the walk-in clinics just want to move you in and out, make some money.

The walk in clinic nearest to me was open until 8:00 and Linda had just arrived home so I told her we should go now, before my nap. I looked like crap. I wheeled in, the pain so bad I forgot the postcards I assembled to bring with me, that level of pain where connecting thought A to thought B just never happens. They put me in a room and the receptionist talked to me. First, she just couldn’t BELIEVE I was in my thirties, and kept saying, “No way!” (considering I was pasty and my arms were different colors I think that was a compliment). Then as her boyfriend was in school to be a neurosurgeon, she wanted to know about my condition but kept saying, “That’s crazy” or “Totally crazy.” About my various conditions (or that my arm was turning green due to the heat). It was obvious she didn’t know this was a terminal condition and was going how it was, “like totally tragic” that I was in a wheelchair.

The Doctor kept going by but never came in, he literally saw every other person who came in after us before he came in. He just kept staring at me and then walking on. Okay yes, in a wheelchair, face totally white pasty in pain, one arm with reynauds to the shoulder, the other purple. I guess he figured I wasn’t a 10 minute case. When he came he said we had 3 minutes to tell him my condition and why we were there. He ignored me after it became clear my speech was slower because of problems remaining from my stroke. He kept trying to put down that I had MS. He had never heard of MSA or autonomic failure, but he had heard of Lyrica. He prescribed me enough for a month and we were OUT OF THERE. That means that I can go back to my GP and say (hopefully), “We have been using this and it works!” (this is how we did it with the heart medication) and we get a lecture about how that isn’t the way it is supposed to work but then he renews the prescription. It turns out this is like the Pro version of Gabipentin (sic) which I tried but gave me heart and BP problems as a side effect. This drug is next generation, better and has less side effects.

The nurse was right, I had the script and so off I went. I put in the prescription and then off to bed, and then up an hour later, not fully rested but to get Linda ready to post the mail tomorrow; 17 postcards and 12 or so ‘surprises.’ Also the receipts of things I am expecting and hoping are in the Post office box.

I take my first Lyrica pill tomorrow morning in case I have insomnia (rare side effect), which tonight would put me in a seizure quick, but if I can’t sleep tomorrow afternoon for the first time in 18 months, I will figure out what to do then, and can survive that. But I hope that in 2-3 days I will have significantly less pain. I can double the dosage after three days. What was strange is that the pharmacist and everyone else, I think even the doctor, just LOOKING at me didn't see a problem with me on morphine or other more, effective opiates. But my GP treats me like this whole anemia, autoimmune disease, peripheral neuropathy and the rest is some excessively tricky way for me to scam him into giving me hard drugs. It makes me feel like a criminal every time I take a pain pill. So thanks to a RN who actually gives a damn and a phone operator at the hospital who gave a damn, they showed me to the back door to getting Lyrica.

I hope in a few days my blogs will be about the good parts of my life, the funny parts. Because this doesn’t seem very funny to me right now.

I was literally insane, planning to take a hammer to my GP’s visit (he said that if I came to an appointment next week and explained it to him myself he ‘might’ think about my pain control). He burned a lot of trust bridges. I needed him, bad. He ran and hid. I don’t forget that. If he was concerned, as he was the last visit, to call and have an emergency visit and drag me down to his office because he felt ‘threatened’ because as he said, I was intellectual and can be abrasive. So, my GP feels the girl is just too intelligent and demands accountability? Maybe there is someone on his board of directors who would like to ask him (instead of the female patient), why he isn’t meeting the FIRST mandate of the non-profit society, Cool Aid of Victoria: The purposes of the Society are: a) To respect the innate value and autonomy of the individuals we serve and to provide for their essential needs.

Actually anytime a male doctor (or any doctor) calls in someone who is sick and ill and he knows that and HASN’T treated them but wants to tell them that they better not THEATEN him with their INTELLEGENCE any time soon... Well, let me tell you doctor what I told the last person who tried that threat: “You had better hit me and hope I am unconscious so you can rape me. Because if you plan me to scale back my brain so you can feel more a man, then you need to find another planet or line of work, you arrogant, sack of insecurity. And isn’t rape what men like you do, when you can’t shut women like me up. So either make your move, or shut it and accept that I MAY be the bigger brain in the room.”

If someone in the Hague is reading this and has an empty slot on human experimentation, and crimes against humanity for a trial; I can testify of one doctor who treated me in a way it is illegal to treat a dog in this province.

Postscript: This post was written after 16 continuing hours of pain. Pain which stopped me from sleeping, and pain which made me unable to open doors or turn on lights. After a week of pain. And after I had to spend from 4:30-7:30 pm, fighting and going to a walk-in because my GP had called to say he 'might' give me some pain control IF I wrote what he wanted and IF I came when he wanted....four days later. So no, I suppose the end of this post wasn't very rational, except in the way people who are under pain and a form of dictatorship keep themselves going, stop themselves from being broken. Or let me put it this way, imagine being in labour with a baby for a WEEK then have the doctor look at his watch and tell you he might be able to get back to you to deliver that baby in four day and think about how you might feel about that doctor in the next several hours, knowing it is just YOU and the PAIN.

Human Silly Putty, the mystery MRI and one hell day.

I would love to tell you about my day but I don’t know if I can, I am THAT exhausted, and this is only the FIRST of three HELL days. But buckle up, here we go!

First, I am dehydrated it seems, but no one knows why or can stop it. The simple test is pushing, like pinching a finger and it is supposed to pop back in three seconds. If it the imprint is still there 20 seconds later, you are dehydrated. Well, with one home care worker I held out my palm and said, “Hey, put your thumb print in!” She pushed her thumb into my hand and a minute later there was still her thumb print.

“I am HUMAN SILLY PUTTY!” I declared. And used the side of my hand to make an imprint of some earrings. I egged the worker to try doing a fingerprint set on the palm from my pinky down.

The worker was edging away, “That’s not normal!” she declared since my palm now still had her thumb print and earrings outlines.

“Of course it isn’t normal, this is me! This is supposed to show I am dehydrated, but let’s play with it.” And I started shaping parts of my palm into a ridge of mountain, which stood there, my own little landscape.

“Shouldn’t you be worried?” the worker asked.

“Nah,” I told her, “I have fingers that turn black, this is nothing odd compared to that!”

Anyway, I was up at 7:00 something to be at the blood clinic for 8:30 exactly because that is when the woman who works with me with our needle protocol was in. She took the three PAGES of tests and said, “I don’t know if we can do all these!”

If I could stand I would have been hopping from one foot to another and was saying, “You said we would go right in LINDA!”

See, let’s say you are scared of spiders or bees in the car with you and your doctor has ordered that you are to be lowered into a giant BOX of spiders (or bees) which will crawl all over you for several minutes as some sort of medical test. Now that doesn’t sound very fun, does it? So what if you arrived, all doped up and trying your “calm breathing” and they say, “Golly, I don’t know, why don’t you sit over there, while we add another couple dozen spiders to the box and see if they are crawling enough for this test.” Well, that doesn’t REALLY calm you down does it? That is what this woman was saying.

Anyway they put me in Room Three (the wheelchair room) and we waited and waited and Linda looked out and the tech was having to call the labs to see if they could do all these odd tests no one had heard of which were being requested. I noticed that Neuro people had me checked for HIV. I wondered if they noticed I had been tested 9 months ago, or cared? Probably not. They checked my blood thinner (aspirin for stroke) and then we waited and waited. We had given her the name of the Rheumatologist we had blackmailed our GP to see (we weren’t doing these tests until he finally months after his promise, he made the referral!). So the vials and the orders for tests were bring printed up.

“How many?” I asked Linda.

She said, “We are just going to do as many as we can, maybe 10 vials and then we will do the rest when we come back.”

“How MANY!” I said with my voice going up at the end.

My previous record was 14 vials, which took I don’t how long. It was not a record I wanted to repeat.

Linda looked down, "Well....twenty vials….in the first batch.”

I was freaking and the tech was still printing them out.

I told Linda, I have to do the down-slope, I can’t come back facing 10+. We agreed with the tech to do as many as I could and when I screamed “STOP” they would stop there and do the rest, because I had to go EAT and then come back EXACTLY two hours later and do the next batch. Welcome to MY PERSONAL HELL.

The printing finally got done and I listened to my music and they took off the EMLA and my vein was bulging and I said “yes” for Linda to grab my arm as a tourniquet. Then I started to listening to something hard beat and started screaming “Go, go, go, go, go, go!”

Well, see, this is the first 10 or 15 seconds where you are going, “Okay, I have my own personal phobia right here INSERTED into my body, but I can deal with that.” It is like being LOWERED into the box of spiders and the lid closes. And then the spiders (or bees) start crawling all over you and you think, come on, it is almost over. Only you know it isn’t over and you are THERE and the spiders all over you crawling, crawling, every inch of you. Well that is what happens at about 20 seconds in and I screamed. And I mean SCREAMED for I guess 70 seconds because even I thought I would give out but as long as the needle was in me I somehow found enough oxygen in me to keep screaming, one LONG continuous scream (I actually remember thinking if this was a note and I held it this long, I could get a record contract!). There wasn’t a question about the people in the waiting room hearing it. Linda said she wasn’t surprised if her doctor two floors up in the same building didn’t hear it.

But were they done? No. So either I had to yell "stop" and come back and do it again or I hang in there and just keep screaming. So I sucked in breaths and screamed things, anything but the word ‘stop’. Since I could FEEL the needle in me, I think I screamed, “I FEEL IT!” a few times. Then the tech says to Linda, “drop your arms.” It turns out that the last vial needed, as required BY the test to be filled simply with blood pressure, without a tourniquet. And it was taking FOREVER. What I did not know is that while there was a needle sticking out of my arm, no blood was coming out. Remember how I have problems with vascular constriction? Seems that includes the big viens too. Guess that is why I am not getting enough oxygen. In the end, Linda had to pump my arm like someone squeezing the last of the toothpaste out of the roll to get the blood (this needle was in the bend of my elbow).

Then I had to go and fill a urine sample to the top. I held the sample and said, “And this is AFTER I have fasted for all night AND went to the bathroom when I woke up?” Yup. So I am there thinking of Niagara Falls and anything else and get 4/5ths full and I think, “Good thing my autonomic failure is retention, what would they do if it was incontinence? Wring out my Depends?”

We come out and the tech has this look on her face. I have seen that face before on other people. So I said, “You have to do more don’t you?” Turns out yes, she does. Plus it seems that about when I had my needle, a car wiped out into all the cars parked next to the road where the clinic is located.

I immediately said, “That wasn’t me!”

Hey I can scream loud, but cause accidents, gosh, I hope not!

Yes, I had to go BACK up on the table and they needed another ‘freeflow’ full vial from me BEFORE I ate. I sighed and Linda got me on the table, I started to listening to "Paint it Black" and we got it done. I wouldn’t flow then either, and was just yelling “Go, go, do it, go!” for about 30 seconds while Linda had to “cheat” again. I am a little unclear about the end because Linda says I tried to look several times but my arm had blood on it (I had to wash the blood off my arm before in the bathroom after round one), so she kept me down and then I went into a Grand Mal seizure. So when I came to the tech was gone and Linda was looking down and I was talking the “Wa wa wa” talk where I am the ONLY person in the world who knows how to talk right it seems, but no one can understand me.

We were then given the container and the dixie cups to collect my urine for the next 24 hours and finally I was free. I had only slept 6 hours the night before with nightmares and this first part had taken TWO HOURS. Linda pushed me home, I ate and then peed so I could go to sleep for 50 minutes (turns out our toilet isn’t really deep enough for BIG dixie cups, I wonder which home toilets are?). So played that game. Poured into bed. Almost asleep. The phone rings. Linda leaves. I sleep 25 minutes and I am up again, putting up the hair again and wheeling off for round three.

The phone? It was my GP, he had tried Linda at work and then at home, he REALLY wanted to talk to her. Needed to change the appointment time on Thursday. Wanted to see us as soon as possible. The MRI results had come back (Linda forgot to ask what they were) but suddenly, my GP who needed months and blackmailing to get a Rheumatologist is saying that the appointment he could get was for December and that isn’t FAST enough and now we have a NEW Rheumatologist. I didn’t get it, he could care less how long it took for specialists before, and now he NEEDS a Rheumatologist now?! Then Linda tells him how I am not breathing well and I need a respirologist. No problem, he has several in mind and will recommend them right away. She tells him about the portable converter. He will do the note no problem.

I am saying, “Who was that? Because that’s not my GP!” Followed by, “Get in that wording Blue Cross needs for the oxygen converter note TODAY, before whatever he was taking on the vacation wears off!”

Turns out the Blue Cross letter is at work, Linda will fax it in tomorrow and pick up the note tomorrow afternoon. But that isn’t all. Talking to the GP she says, “We know you don’t feel comfortable prescribing pain medication, so we were thinking about a pain specialist” (This is where we thought he would balk).

Instead he says, “That sounds like a good idea, I know someone who is really good, who were you thinking of?” She opened the email we received from local readers and gave the name and he said he knew him and that guy was really good and who he was thinking of and he would set it up.

AGAIN, who IS THIS?

I said to Linda, “I don’t know what came back on that MRI but it lit a fire under him”

She agreed.

Actually that worried me, what could BE on a section of MRI that required the chief radiologist to come exam the MRI’s while I was IN the machine and then shoot even more sections? Not only that, the GP WANTS to talk to Cheryl about the seizures. Before, he wasn’t interested. What is ON that MRI? See in Canada, if it comes back negative, they never say anything; you might ask a meeting or two later and they go, “Oh turned out to be negative.” Not calls and three new specialists. Oh well, find out soon enough.

I was drugged and back and we tell the woman (very nice woman) that in the last two hours we have a NEW Rheumatologist and give her that name and number. She has this look like, “I kind of WANT to strangle you for all the paperwork I have to redo” but said with a pleasant voice between gritted teeth that LUCKILY none of the blood had left the lab yet.

I am back up on the bed and it turns out this blood series is to be another free flow thing and for the third time we prove that my vagovascular system is totally fucked, because you stick me, I don’t bleed. I am ZOMBIE BETH and I am coming to a town near you. (woo hoo, failed at LEAST two witch tests, and does my seizure speak count as talking in the ‘devils tongue’? I would like to say after this I went home and ‘rode my broomstick’ but I was too tired for that, even with the new batteries).

I am rewarded after the third blood stick by having to fill ANOTHER vial of pee. Linda meanwhile has to fill in an “incident report” about my seizure.

Anyway, we were done and wheeled and staggered back home.

More dixie cups in the toilet, more pee on my hand. More OCD hand washing. Finally get to bed, I have an hour and 25 minutes before the next appointment. We get into bed, almost asleep and…the phone rings! God we can’t win!

It is the lab we gave blood at. Linda and I look at each other with the eyes of people making a mutual suicide pact if we are told we have to go back there today. No, they are calling to tell us to THROW AWAY all the pee I have collected today. They have decided I need to start collecting the pee tomorrow. Wha?

We go back to bed and get to sleep a bit. And people wonder WHY I hate the tests and the lab work.

We go to my appointment at Triumph. We were to get the keyboard and the air con. We have. They haven’t reimbursed us. My “coach” M. was supposed to get me the OT recommended wheelchair (with head rest and tilt). She didn’t call anyone but emailed me almost every day telling me that I should do it. That she just needed a “money number.” I called R. at Motion Specialties and gave him M.’s number and said, she doesn’t GET what ordering wheelchairs are about (just the wheels can cost $450-$2000), please help her; I need an electric with head rest and tilt that can fit through doors (an option to add cheek control would be smart). He talked to her and said that the most basic would be $2,800 without taxes for a manual but would go up to $30,000 for an electric. She told us she had decided on a number in the middle, $4,000. I don’t think she did well in math class. She says, “if it is more than that, you need to get the number to me and I can run it past finance.” Sigh, after two months she gets what she first asked for – us to do all the work. And no real solution.

Anyway, the table for my bed…..after two months she has NOT ordered it because it is US company and she wants to send it to a US address. I give her our US address. Linda pointedly waits so she will call and order it NOW. She turns to Linda and asks her for LINDA’s credit card with “I’ll reimburse you, it is just the finance department is on the second floor.”

I said, “We just had to pay $1000 on a PRE-APPROVED mattress, so, sorry, can’t help.”

She tells the medical supplier if she can order a table and then pay for it later. Geez, sound more suspicious can you? She hangs up and says they won't do that and that she needs a street address not a PO Box. We say we will email it to her. (email it EVERY day until she orders the TABLE!)

Guess what I find out today? That M. the woman at Triumph who has not found me a job or really helped me do anything but after 9 months has authorized me to find ‘someone’ to set up the computer for $100 and “we’ll reimburse you” (still waiting on the 'reimburse' for the air conditioner lady?). So while SHE doesn’t find tech people by using this odd object called a PHONE BOOK, I am free to do her job while she collects the paycheck. Sorry, that wasn’t the good part. Guess where M. worked before she became my “Work Coach” at Triumph (you know she is the person who MADE me write out a complaint against staff because, as she told me, I made her angry)? She worked at…..BEACON Home Community Care.

Makes sense doesn’t it, work one place where you treat the clients as sub-humans while you collect a paycheck and now another organization that does the same.

I came home and slept for over 2 and a half hours. And now I am ready for my next appointment tomorrow morning, and then my GP on Thursday morning.

Thanks for hanging with me. And sorry I haven’t been commenting, but I do comment AS much as I can. I am beat, so any messages of encouragement during these three days would be GREATLY appreciated.

Oh, I also sent out 20 post cards Sunday and Monday. Now that seems like weeks ago instead of yesterday. Glad I did it then before I got all exhausted. Cheers.

Oh Neil, glad that it is over for one of us!