One of the best (teen) books I have read about females in sports also happens to be a realistic book about a C6 spinal cord injury. It is called The Off Season and it feels like reading about growing up, some combo of Linda and I. D.J. is the youngest sibling and only girl on an individual milk farm that does what most do; the mother works as an elementary principal to bring income to keep the farm afloat. All so cows can get milked twice a day, so that D.J., who kicks ass at softball, never gets to finish a labour day game. Why? Because cows don’t milk themselves.
D.J. fought the previous year to play linebacker on the US high school football team (yes, the boys football team). She is over six foot and plays basketball primarily but both her brothers play college football – it is the way to get an education. D.J.’s boyfriend is the Quarterback of the rival towns' team and the one she sacks in the pre-season scrimmage. D.J. is a linebacker due to skill and hard work, not because she is a ‘token’ female. Meanwhile her friend Amber has come out of the closet as lesbian and due to harrassment lives with her lover. Amber and her lover both work instead of high school, saving up money to drive to a place for a new start.
Suddenly, with a shoulder injury that could affect her basketball, and her brother Win getting a bad blow and being hospitalized D.J.’s life changes. She can still be a linebacker, but the shoulder injury will affect her basketball and basketball is the way to a scholarship to college. Meanwhile, Win, who had a spinal injury is now a parapalegic, but just lies there, refusing to speak, and she has to be the strong one, with her mother injured and her father trying ‘organic’ and turkeys to keep the farm afloat. Days doing homework in Win’s room and nights drying his eyes from his quiet crying. She has decisions about her own life to make, about the sport she loves and fought to play which she has to drop if she wants to play the sport (basketball) which could take her all the way. And in the midst of this, she is dumped by her boyfriend for being ‘too tall’. It is the reality of it all that makes this such a great book. There is no magic solution, only hard choices and just gutting onward.
D.J., like her father and brothers has had a hard life, one where being ignored at school hurts but compared with a mother with a bad back, having to take care of the farm, doing the schoolwork, basketball, football, no money, it is just pain. Right now she needs to be there for both of her brothers, the one who is now a C-6 and the one who has to be told, ‘I’ll take care of it, just go back and play college ball, and play well enough to keep your scholarship.’ A hard life, but one that teaches you how to be tough in ways beyond working hard; how to stand up for friends (like lifting a guy making gay slurs off the floor), how to know you will never be ‘beautiful’ but you ARE, and that is what is. DJ lives the hard life that teaches you how to make hard choices, because no one else can.
And for those of us who grew up with a hard life, looking for a book about sports, or disabilities, or being tall and female, and not puff books about sleepovers and angst over getting the right spring dance dress (like WE would be invited to sleepovers, or have that angst when running wind sprints for an hour every day before school – more like trying not to puke). Wearing old shoes to school with no tread because we couldn’t afford others, and our basketball shoes were treated more precious than our church mary-janes (though parents wanted the latter polished a lot more often). Here is a book for the other 20%+ of us. One book versus thousands, but it is a great book. And helps you know you aren’t alone.
For my mental health I have been reading Harmony by Itoh which was written while he had cancer, and edited in the hospital during prolonged treatment. He died from cancer, having only written two books, but said in this book the things that can never be said, have never been said – and it won the two awards of best Novel for the year Japan. "resource awareness can go fuck itself. My body isn’t here for the admedistration. It is not here for any of you. It’s only here for me. ‘these tits, this ass, they belong to me’”
A book about Tuan and her teen friend Miach Mihie who sees the referring to youth as ‘resources’, to women’s wombs as ‘resources’ as exploitation. The whole society where honest feeling, expressed openly in a way seen as ‘out of control’ has moral meaning as ‘wrong’ or 'socially unacceptable’ is exploitation. She and Tuan plan to show that their body is theirs alone by starving to death. Tuan wakes to find Miach dead and she is now alone is a society where her acts, her reactions, her health are seen not as a part of HER, but as part of her responsibility to society (eat well or burden society, produce children for the next generation, be a good workers, a good resource!). For a child who was sexual exploited before joining a society of conformity, what difference is there between a man with a gun who tells you he owns your vagina and a Minister of Family, or Minister of Health who says the same? A society where displaying raw emotion was punished as even our reactions are ‘owned’ by the collective?
“A vast wasteland of public correctness and people as resources”
Anyone who has been in the medical system, particularly a female, has learned that certain emotions, over emotion, certain displays of intellect are not acceptable and clamped down on. That illness makes you a property within the medical establishment, things like privacy, or confidentiality end when every nurse knows your chart. Comply or be forced to do so….for your own good.
What then the different between death and the governments, groups, businesses all trying to control and manipulate our will and consciousness? The Utopia we are offered is Harmony, a life without consciousness where we buy, we exercise, we live all according to expectations. It would be Harmony, it would be Utopia, there just would not be an ‘I’.
“It is over life, thoughout its unfolding, that power establishs its dominion; death is power’s limit, the moment that escapes it; death becomes the most secret aspect of existence, the most private’--Michael Foucault.
The first question that plagued me when I became disabled was ‘but what worth will I be to society? Why do I deserve to live, to be supported?’ – this book attacks the idea that had so wrapped itself into me that even in sickness I was trying to be a good ‘resource.’ It is a book that transcends genre, and I will probably take it with me to the hospital. Far better than those watching and ordering I follow Kubler Ross’s stages like a timetable; trying to tell me how I am ‘supposed’ to feel, and what five simple steps billions of deaths will all take (it is a theory, that’s all, one which works for SOME people).
Hard lives, hard deaths. It takes courage to write about them.
And now for something complete different.
I’ve referred to Chi’s Sweet Home before, but seriously, if you have a kitten, and you like cats, then you will like Chi’s Sweet home. It was a TV series with about 100 five minute episodes. Each book manages to put the entire season in one full colour manga book. The viewpoint is of Chi, and while sometimes sad when Chi remembers her mom, and goes looking for her, it is often the impulse fun of kitten. But also sometimes tainted with some ‘grrrr’ toward the guy who took her to the vet (and had the thermometer up THERE). If you get the books before the release date (August 24th for the 2nd book) you get the book for $9.41 which is less than we paid at Comic-con, 33% off and all. (oh, the links here produce no revenue, this is an ad free zone, I just put them there so you can get the best price easily if you decide you want it). The best review for the book is for you to experience it, so here is a ‘episode’ from season 1, when Chi finds the OFFICE with so much to play with, like computer keyboards (I have received many emails with extra letter from people who have had kittens walk across the keyboard during the email).
Everyone who has read these books recommends them. So grab a copy for almost $5 off when you can (that’s almost 55% of Chi’s next book paid for!).
I just want to finish saying a bit about how glad I was to see The Off Season after reading literally over a dozen books from Girl in the Arena to Forest of Hands and Teeth where the female just hangs about waiting for the alpha male to help her, and marry her (add zombies, gladiator, no food, a cone around teens with new mind powers or some other odd future). The young adult fiction for teen girls IS Margaret Atwood’s the Handmaids Tale only without any irony. Why do only men patrol the fence? Why can’t the main character make up her own mind without a guy to lead? Why in the future is there gladiator combat but the women’s league is discounted? Well, that’s just how it is, so learn to look good, be nice and wait for some guy to marry you. If you think I am joking, looking at the HUGE bestselling series The Mockingjay Trilogy, where our heroine Katniss learns that while she has to KILL the other 24 participants. But wait, nice girls don’t DO that. So instead she get a REALLY good stylist and makes a HUGE impression with her dress. And ends up being NICE and friends with two others, and somehow is the survivor without killing anyone (except this nasty girl who was attacking her while she was laying flowers on the grave she made of a child – geez, is this high school, or a battle arena?). The Second book, Catching Fire, has her sucked back in with double the participants (now she has to kill 48 people), except of course she has her super stylist make her have FAB hair and an amazing costume so the TV audience love her and ends up…killing no one….again (I know, a fight to the death against 72 people and she WINS, by having good MAKEUP!!!). It is so popular that there is a home game, so you can play the Hunger Games Strategy Game – you can wear the t-shirt, get the key-chain. Why make hard choices when you can learn to turn that smile and social pressure to be nice into a formula which makes 70 people kill each other and you survive (if only life was like that – IT IS NOT!)?
The new teen books this week included one of a future post disaster (which all the teen books are about), where it is an island of women, who protect against the enemy: MEN. Okay, kind of boring old story that. But wait, our teenage watchers and hunters find an old ruin. I love ruins. And in this one they find things which turn their world upside down. Ready???? They find high heel shoes, and make-up and fashion magazines. Then return to the main village and start to question why they have to do what they do. Yes, the high heel shoes and make up empowers them away from being able to take care of themselves. The book even includes ‘talking points’ for classes. Can you see why after that a REAL life when you have to get up and milk cows even when it is freezing and you might, golly, chip a nail is such a relief! To see a growing woman who actually WANTS something and is willing to fight for it, and that isn’t fighting to be noticed by some guy she will hope will marry her.
I don’t wear nail polish, because between falling down, manual transfers, manual chairs and the rest of disability life, it requires someone professional to put it on, and lasts a few days. Nail polish is nice, it is pretty but I don’t need it to live. Good goth earrings are another story altogether however!
As a weekend relax (for me, using your brain IS one of the greatest pleasures), here is a music video to the Unusuals (the NY police). The first part is a good and nice police officer being blackmailed by a bad guy from his home town, trying to decide what to do, arrest or do nothing. The second part is about the Murder Shop – where in NY, you can go to this shop and get everything from uniforms to ways to kill whoever you want. The Police decide instead of shutting it down to keep it open. However, SO many people come in, and they arrest them that is it just darn depressing, but even when they try to quit, people are begging them for help in murdering someone else (the depressing irony). Lord Lord Lord!
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 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.
Following this weeks tradition of short notice screwing of EVERY SINGLE DAY, we had many emergencies today of which was not the least that a) Dr. Atwell-Pope ignored the instruction that she was no longer my neurologist of record. She called my GP to convince him that the Neuropsych unit where people with MS, Lupus, epilepsy and others learn behavior modification to keep their many symptoms (some of which are assumed to be stress related and thus bogus), in check and not constantly require attention from doctors or other medical staff was actually all about Neurological investigation (when all the literature FROM the unit says otherwise). And b) My GP decided he needed to speak to me today, this afternoon.
So I meanwhile was in my continuing quest to get another Home Care Nurse than Edriss, which it appears had never been done before. And the further I went, the more supervisors I talked to, the more you could have made ice over the phone line. First, CLIENTS don’t tell RN’s what they can and cannot do (Because Clients are usually 75 or so), and second, it was ass covering time. It turns out now that the head of the nursing section of VIHA has been added to tomorrows meeting (notified at 4:00 pm today, meeting tomorrow at 11:00 am). I asked if that meant we would talk about getting me a new nurse. The Nurse supervisor said, “All the parties will be present.” – and that is literally the ONLY sentence she would say. So fun, as I try to replace my nurse who has commandeered MY apartment for HER meeting.
Meanwhile my GP, because I had made a complaint against Dr. Atwell-Pope felt threatened, as I am “abrasive” and highly intelligent and would HE then have a complaint against HIM? I told him that of all the doctors who refused to treat me from sexual orientation to religious beliefs, I NEVER made an official complaint and I never expected to. Dr. Atwell-Pope had, in her own practice and now with her interference in my relationship with my GP (like this meeting for example) was causing a detrimental impact in my health instead of assisting in my healing. She had ordered tests, not to try and find out what was wrong or treat me but to prove she was right. This occurred even after her theory had been dismissed by her mentor, she continued in ordering the same tests repeatedly hoping for different outcomes and trying to stop all treatment from all parties, including my GP, because it would go against what her “instinct” told her a year ago. By the time this was all explained and everyone was okay, the talking on the phone for 7 hours, the week of exhaustion and the being in a very hot room made me put down my drink because “something was happening” (in EMT speak a “sense of foreboding”). Then I had a seizure. The Doctor observed (did nada to help me apparently – I was, um, busy, at the time) and Linda narrated what was going to happen next.
This made Linda’s day.
I feel like I have been repeatedly beaten.
The doctor has ordered an emergency CT scan. He will start me on pills next week. I spent a great deal of time not fighting the system in bed but Linda is happy because now the Doctor has SEEN, and he believes. Which makes me feel a bit like I am the miracle worker only in reverse, I have to create a disaster in myself, to make people into believers.
And starting tomorrow at 10:00, it all starts again! We have eight people in the meeting regarding care of my seizures. I told Linda I don’t know how I am going to stand the heat of being in a room with seven people. She said, that maybe (with a smile) I won’t be able to.
“You want me to have a seizure!” I yelled outraged.
She admitted that it would be very effective. I pointed out that it is VERY painful and that no, I cannot go around having seizures and losing days just to make points during meetings however USEFUL that might appear to be. Not to mention I don’t have control over it (though heat, stress, and fatigue are all factors).
Sigh, if this week ends, I swear, I am ripping out the phone because having a “week off” from my medical week which had two meetings a day and 5 hours on the phone minimum followed by ANOTHER week of medical tests (but this time, they are going to be “emergency tests for Seizures, including a EEG test after I am completely fatigued…..at night…in a warm room) Please, just let me write a damn postcard. Please. Let me watch a DVD. Let me send a gift. Please. Stop testing me and start CARING about me.
P.S. (1:55 a.m.) I actually did stay up past 1:30 a.m. and went to bed relatively content, a bit of my life taken back. To see how and why, go here
I have yet to see my GP, which I will see at 6:00 pm, so a very late nap for me (the purple/blue Beth). Oddly, my heart rate was elevated for 6 hours yesterday over 100 bpm, at rest. And when agitated, going much higher than that (like 140), which is kind of tiring. So tiring that when I came to bed, I had a small seizure and stopped breathing, and it was an hour and two incidents of mouth to mouth resuscitation before I was breathing on my own, even with oxygen. I got to sleep at 4:00 am and was woken after 8:00 by doctor’s offices, and then every 40 minutes there-after, though I kept giving them Linda as the contact person. It seems that the receptionist for Dr. Atwell-Pope is new and thinks that I am someone else and that I was calling about being refused to see Dr. McClellin (who is that?). Then Cool Aide, called (my GP clinic) and I explained part of the problem and explained about last night begged them to stop calling me. That was at 10:25. Then they started the road construction outside. So I will be lagging a bit for a few days I think.
But before we go on, let us take a nice break and just gaze at these wonderful anime girls (my anime girl post cards arrived, all 25 of them!). See, this is what is really important......ahhhh, don't you feel better? Okay onward!
In case you are tuning in, the seizures which have been explained by Cheryl and told to my GP by the VIHA nurse prompted him to action in calling Atwell-Pope, who said I could only be diagnosed in the Neuro-Psych Ward (and I was going to be admitted under an emergency basis in the next two weeks). This seems a very odd way to diagnosis everyone in Victoria and Vancouver for epilepsy since it only has 10 rotating in-patient beds. Anyway, it turns out that under the UBC neuro-psych ward there are four or five admittance rules, and I don’t fall into them. For instance, I have not had a Psych consult yet which is required before admittance. You can’t be admitted if you are immune suppressed (hand up), or if you have an autoimmune disease (hand up – the head of Neurology teaching and Atwell-Pope’s mentor put in her letter that she believes I have an autoimmune disease which is causing the autonomic failure). Last and most important I cannot be in emergent condition (hand up – like not breathing on my own?), or likely to need emergent attention (hand up!).
Also, looking at the big picture, I have anemia which is getting worse without a known cause. I have an undiagnosed autoimmune disease (let’s ignore the autonomic failure which causes heat stroke and the heart problems and the oxygen conversion). Which means that I need to see someone who can address and test THOSE issues, which will kill me, particularly the anemia, without transfusions or other treatment which is needed in a hospital not an neuropsych ward with their MRI and CT scan. I am seeing a Rhumatologist in less than two months. He can diagnose and treat the anemia and autoimmune disease; which to me is a priority. IF after that, I still have seizures, we can examine how to get those treated (like in the states, or after seeing a autonomic failure specialist). The problem is that everyone is going around talking about “Conversion” and “Disease of exclusion” and I already HAVE a disease of exclusion: either MSA or AAN – both of which have hospital records, expert opinions and test results to verify. Conversion disorder has….no evidence for but much against (like the nerve conduction and MRI tests). Mezei mentioned she did have one patient WITH autonomic function…..but she believed that the autonomic failure was a form of “Conversion Disorder” (this is medically considered impossible).
But the thing is, I am not spending any time more than today on this, besides changing the medical power of attorney so they can’t use my stroke and seizures to say that I am unable to make decisions and thus the doctors need to make decisions for me (they use this for mental illness too – say that your denial of getting ECT, which they HAVE as a treatment in the NeuroPsych ward they are sending me to, is just a manifestation of your illness and that with a few zaps!……). I am concentrating on Postcards, writing postcards and doing a secret fun project because these people will only steal my current quality of life, such that it is, if I let them. Get me to a pain specialist and a Rhumatologist and then, if or when there is time, we will examine the seizures in the USA (or the UK…or Mexico…or Columbia…or Cuba…or India) where they seem to be able to declare epilepsy without needed a psych evaluation or putting the person in a locked neuropsych ward.
So the news that my anime girl postcards arrived means I am in heaven. Only problem is that I want to keep them all for me! I mean, look at them, who wouldn’t? But this will give me a lot of options for the people who want anime girl postcards and the Yuri lovers and the lesbian and bisexual readers who want postcards (never too late, just email me at mpshiel at hotmail.com with the title Postcard). See, to me, THAT is what is important. And yes, less pain and maybe some treatment, but I can’t control that but I can control this. So I can send out these postcards and make other people happy. I hope THAT isn’t considered a mental illness yet?
Anyway, I wanted the people to read here to have something NICE to look at and to know that I will put little updates but I am going back to writing about disability issues, not just my wacky doctors. And life issues and squirrels and having fun with friends and the life of a woman in a wheelchair. And that is what I am doing right now, choosing life, to LIVE all the minutes I can, by doing what I want and enjoy doing, which is postcards, and emails to people, and other secret special projects (some of which may have started to arrive). You have endured my terror, how about joining me in my living? And sharing what you are doing to affirm your living this week? Look at these (I have 25 of these postcards, so lucky!).
It was Thursday night and since I was no longer in excruciating pain with a completely twisted back (just sort of twisted, my spine is no longer UNDER a shoulder blade), I decided it’s BOXING NIGHT! Hey, just because one system has failed doesn’t mean I need to abandon the rest (get the sweat going, the micro-capillary and cardiovascular hopefully). It turns out that Boxing finished last week and is on a break, which means empty room. But no problem, I came to sweat, so I put on the tunes of something really fast (Paint it Black was in there) and did enough rounds of two and three minute shadow boxing until I started to get a sheen. “This one is going to crack it!” I told Linda and started a final three minute shadow boxing trying to keep up a speed of four punches a second; that didn’t last for a minute. Then it was 2 punches a second with the attempts to punch up, to hook, to do up and down combos, double jabs, the whole thing and yes, I did not glow, I DRIPPED. Which means victory, but also extreme and unbelievable pain, but hopefully for only 2 or three days. It also means I won’t sleep much tonight but will hallucinate a lot (it isn't as fun as it sounds).
Still, wanted you all to know that just because I know that one system seems to be uncorrectable does not means I am giving up on the others or myself; this is how I stretch time and if the cost is pain, then that is the cost.
I, of course, could have stopped there (should have?), but hey, I’m E.F.M. so I got the mats and did 40 sit-ups with combo punches at the top and finished with 20 push-ups. You can see me here, totally wrecked and spent, but with that, “I DID IT!” look on my face. I pulled myself back into the chair and in the next room there was one guy shooting with a basketball.
I haven’t done basketball since in the chair and so I asked him if he wanted to play HORSE (One person shoots, if they get it in and the other person misses, the person who missed get a letter: H and then O and down to E where you lose). Well, it turns out that I cannot with all my body and arm get that ball up there with one arm. And only some of the time can I even get it near the rim with two arms. It was the distance, I just wasn’t strong enough to throw a one or two pound basketball that high. So, I lost. Haha.
I said to Linda on the way home, “Well, now I know not to try Wheelchair Basketball.”
The next block, “I should have done that last year, when my muscles still worked.” (It looks like I have muscles in the pics, but often I can’t hold a full gatorade, or specifically pull it from a distance to my mouth without dropping it or not even able to move it, I guess this is what the nerve loss means).
This morning (Thursday) I woke up with my limbs rigid, and that started to spread. “Get Linda.” I told the night care worker, luckily she was a LPN and was not freaking when I went into a Grand Mal, and then later into another one. Linda says my eyes were dancing all over the place independently (which sounds kinds of interesting to watch, except I can’t because I’m the one doing it and see nothing), before rolling into the back of my head and I had another seizure. After my muscles finally calmed down and I went back to sleep, I woke AGAIN two hours later with the leg cramps below the knee (any ideas what is going on with that - three days now!) and the feeling that a truck had run me over and dragged me a block, before backing up over me. Turns out Seizures AS sleep is not actually very restful, and kind of hurts.
So I had a nose bleed all today. I spent a great deal of time trying to get past the gatekeepers at the Victoria Hospice Society and the VIHA Home Care Nurse. The Nurse’s response to things like, “I wanted to let you know I have TIA’s and I am on oxygen 8 hours a day and still have blue lips” was “And why are you telling me?” Well, because she is the only person who can do a hospice referral, after only after she does a home visit, but she doesn’t want to DO a home visit and said she didn’t want medical records, didn’t want the home care staff calling her during TIA’s or larger strokes or seizures and that I should just go to my GP (and leave her alone). Ironically she is supposed to be the "medical back-up" for my home care workers to call if there is a problem.
I told this to the Hospice Society (who sent me to her first) and they told me my GP had to do it all then. I told her that since my GP was getting a bit swamped due to all the specialists quitting and dumping it back on him that The Hospice services like pain control and counseling could help. She wanted to know if I needed pain control. I said yes, I also explained why I don’t think an RN could spend 10 minutes to determine if a 1 in a million presentation of a disease is in the palliative stage and I was just trying to register with them (as their web page said you could do up to a year in advance).
She said she could do something about the pain control, told me she was transferring me to the pain center. I waited as the phone rang, and rang, and rang, and a voice message told me this was the radiation department for the oncology department.
I can’t tell if she was pissed at me or that was a genuine accident.
Linda spent hours on the phone trying to get things like an oxygen concentrator and we have a meeting next Thursday which will determine IF we get the right note for the concentrator or not. So a little stress. Also the same meeting I will try to get a Respirologist. But I did my boxing, and now my hands are shaking so I better go. Fight on!
Also, this is one screwed up town. Seriously. The good news is that they guy playing me Horse thought I was 24 or so. The bad news is that Linda got asked if the medical equipment she was asking about was for her daughter (ouch!).
D.J.’s boyfriend is the Quarterback of the rival towns' team and the one she sacks in the pre-season scrimmage. D.J. is a linebacker due to skill and hard work, not because she is a ‘token’ female. Meanwhile her friend Amber has come out of the closet as lesbian and due to harrassment lives with her lover. Amber and her lover both work instead of high school, saving up money to drive to a place for a new start.
If you get the books before the release date (August 24th for the 2nd book) you get the book for $9.41 which is less than we paid at Comic-con, 33% off and all. (oh, the links here produce no revenue, this is an ad free zone, I just put them there so you can get the best price easily if you decide you want it). The best review for the book is for you to experience it, so here is a ‘episode’ from season 1, when Chi finds the OFFICE with so much to play with, like computer keyboards (I have received many emails with extra letter from people who have had kittens walk across the keyboard during the email).
