Saturday, May 31, 2008
“What did I do to deserve them?” She asked me.
I thought for a moment and my practical side said, “Well, you gave many online readers presents from Japan and maybe they wanted to return the sentiment?”
She didn’t believe that anything she sent could be the reason, plus she thought some were from people she didn’t send anything to.
“You show people that you really care about them. They can see they are important to you. You talk to them every day and when you hear they are having down days you write a postcard or send a gift to cheer them up. I think showing you care is one of the greatest gifts you can give someone.”
During the time Elizabeth was with fever and after, we had been ill in our own relationship. Between the week of medical tests and the week of Elizabeth being sick and me trying to catch up at work, I felt out of control. I felt like I didn’t know where to turn, so I just kept ignoring things. Sometimes Elizabeth was part of these things.
Elizabeth confronted me after a few actions that something was wrong and my reaction was “nothing is wrong.” Elizabeth kept asking “Why did you…?”, “Why did you say…?” So MANY “Why?” (sheesh, WHY can’t she let me be!) So I went to the park and wrote a list of my emotions. As I started writing, the list got longer and longer with more and more pages. I began to realize that I was in denial, I was in, “ignore it and everything will be okay” mode.
Yet some of the statements I wrote down were:
“Anger and self pity that I have to make decisions on my own”
“Scared to express my feelings”
“Always feeling torn (demands on my time) between work and Beth”
“Scared I’ll lose my job and benefits”
“Angry that Elizabeth has to be sick”
“Angry that family doesn’t support us”
“Frustration that I have to make up so much work” (If it is a child or a parent I wouldn’t have to make up any time, but any medical appointment I go to for a SPOUSE, I have to work back.)
“Angry that I can’t keep up with the little things, like chores”
“Angry with the medicos”
This is just a small part of what I wrote down and it seems like I DID have emotions, just the ones about caregiving (or the future) were ones I wanted to hide.
I went home and talked to Elizabeth about some of the list. The problem was that Elizabeth felt frustrated and depressed that so much of what was bothering me was about her illness; something she WOULD change for me, if she could.
And then, when we were trying to find her sports outfit for boxing, I kept saying, “I know where that is!” only to run into YET another pile of laundry that Elizabeth had washed but I had never put away: a stack in the bedroom, a stack in the living room, a stack on the kitchen chair, a stack on the dresser, and on and on. I don’t remember if I actually did scream, but it sure made me want to.
When I came home from work yesterday, after finding out I was flying out AGAIN next week for a meeting in Vancouver, our apartment looked very different. I could see our furniture, like ALL of it, not just the outlines.
Elizabeth had spent the day, including working two hours with her home care person who could put things away, to find the clothes, to sort the clothes and to hang up and put away the clothes; only to find MORE stacks of clothes! So she sorted and put away those too as well as doing two loads of laundry. She also cleaned the living room, the area around the couch, organized the clothes drawers and hangers and took out about seven or more bags of garbage. There was even my bed made.
I know it may not seem like much for many people but for me it meant a lot. It told me that:
1) Elizabeth was really listening to what I said (about my feelings)
2) Elizabeth loves me and wanted me to come home to a place where I didn’t feel guilty or upset at work undone.
3) This kind of housework takes Elizabeth a lot of time and effort since she cannot walk and carry things but must make many, many trips in her indoor wheelchair just to sort or put away one stack of clothes, a little bit at a time. This is probably why she is still in pain and exhausted today.
4) I was married to the best person ever.
She said she wanted me to be able to come home and just relax, to read a book or whatever I wanted. I did do a Sudoku, and read the paper.
Another gift she gave was some inspiration. Yikes – the “I” word. With some of the work done other chores I had put off didn’t seem as insurmountable anymore. I sorted through the piles of shoes (almost all mine) in the entrance way last night. Today I returned the Gatorade and water bottles to the recycling depot, donated some old clothes to charity and on the way back picked up pots for the soil and herb seeds I bought a few weeks ago. Haha! We actually have a ‘home’ again instead of various piles with small wheelchair pathways and occasional places for sitting down.
Thank you Elizabeth. You’re the best!
Well, that is enough about me and my ‘caregiver blues’… you’re here to read about Elizabeth.
Combining boxing and housework within 24 hours is a recipe for pain, pain and more pain. When Elizabeth came to bed last night she was hallucinating from it. She thought there were people in the room with knives, including me, waiting to skin her. She had already taken double the pain pills and muscle relaxants she usually does and it didn’t seem to make things easier. Her muscles were also twitching over her body.
She did eventually get to sleep and had to take another set of pills in the morning. She slept off and on for 8.5 hours, being woken by pain. Her energy is low, which means she spends a lot of time with her head held up by the wall. I guess it is to be expected.
She was able to meet with me and a lady from Lifeline who had come today to install a special two-way phone system. Lifeline provided a wrist band with a call button so that if Elizabeth needs help and no one is around she presses it and is automatically connected to a helpline. They will talk to her and if they can’t hear her (she’s unconscious or otherwise unable to speak) they will call me at work. The phone has a speaker and in theory should be able to pick up her voice from any room in the apartment. Because we’ve got too many air conditioners/fans running and her voice is soft it DIDN’T work. We’re going to rearrange the study and put the phone in there as this is where she spends most of her waking hours.
Also I got approval yesterday from the building owner, via Fran our building manager, that I could get an air conditioner. First Fran suggested pinning dark sheets to our curtains to cut down the sun’s heat. When I told her we had already done that, she said how about a portable air conditioner as it would cool the whole apartment. I told her we bought one last year and it isn’t powerful enough to do that. Not only is it not powerful enough, it’s twice as noisy as a window unit and twice as expensive. She said it may be half the price to buy a window unit but then they’d have to replace the window to make it fit. What?? I told her I thought we could keep the existing window and put some plywood in the open space above the machine. She reluctantly agreed – "but make sure it isn’t Styrofoam, because even though you live on the third floor someone might see the Styrofoam as an easy way to break into the building." Okkaaay… if someone had a ladder long enough or was willing to risk scaling our building I think they’d deserve a reward of some sort because when it is hot EVERY window in EVERY apartment is open. Besides, who’s stuff would they steal? Ours, so why should she care? I think Fran would LOVE to inspect our place and point out the MANY things she thinks we “should” be doing, but since she seems little concerned with how things affect Elizabeth’s health, I have no interest in listening.
Guess we’re going air conditioner shopping this week. Fortunately the weather hasn’t been unbearably hot for Elizabeth the last few days.
Elizabeth is up now, but had some sort of neuro short-out during the long nap. So I guess I am in charge of the thinking around here. And my thinking says, “We’re going drinking!”
Friday, May 30, 2008
See, the only way this works is that I must use as MUCH energy as possible in as short a period of time, which means throwing punches constantly, in order to sweat, to sweat and literally RESTART my entire cardiovascular and micro-capillary system. It turned out that all the women but one had gone so I got guys, big guys, ex-boxer guys, but I was SO intent on boxing, and boxing, and doing it ALL, that I never noticed there was an assistant coach hanging on the back of my chair to keep me in place. In the first picture, where my wheels are complete off the ground (by almost a foot), all I remember is thinking, “Wow, I must be getting really good at keeping my balance, since I didn’t fall over.”
It turns out that since I come on a bit like, er…a steam train, they are actually holding ME back in order to give the guys bouting me the chance to practice footwork and avoiding me. But as you can see ion this picture with me accelerating my right hand, that the guy in red better have some good footwork to avoid what is ABOUT to arrive. Did he swerve, or bob, or weave, or run away? Sadly, no.
And remember when I kept asking the assistant coaches and boxers to “hit my head” for three minutes. It turns out that I LEARNED something, specifically to use their trick and when they throw a jab or a roundhouse, to get inside, use my arm to push their arm out of the way as I follow it back to…their head.
From a different angle you can see me making the EXACT same punch on a new opponent, pushing his arm out of the way as I land mine on this new guy. The Coach told me that he was trying to figure out how to get these guys to work on footwork when it was like God answered his prayer and I rolled in. Um, I am not sure how me hitting people’s head is an answer to prayer but whatever. I will state that I did not bout these guys until we did a “Okay, hit my guard and then hit my head” with these guys, followed with, “No, I am in a wheelchair, I have STRONG arms, you need to HIT them.” Just to make sure these guys knew that they needed to bring it on. Okay, now for those who don’t follow a lot of boxing, I just want to point out a few things. If your opponent is MUCH shorter than you and nails you in the stomach (like this). What is the worst thing you can do? Well that would be, dropping your guard from your head as you curl up, which, YUP, puts your unprotected FACE actually CLOSER to me.
Luckily he was boxing the Neruo-slowed girl and actually got a glove up so he was able to hit HIMSELF in the face (I hit his glove, his glove hits him). Try to remember that I am not evil or viscous, that this is all PURELY medicinal, and that the excitement of playing chess with body parts has NOTHING to do with why I am smiling so much.
Now while I barely slept last night. I have restarted my system and other than the OVERWHELMING pain which is more than the pain pills I take can handle (I woke up because I dreamt someone was skinning me with a skinning knife, and that WAS because of my pain), I have more energy and in short, it WORKED!
Also this week, now that I am conscious, I can show some of the amazing gifts that people have sent me, some people I think I know hardly at all (or not in some cases, but that might just be part of the “forgotten parts” left over from the seizure). I have NOT put in any names, in case you wanted to remain nameless but I wanted to ensure that EVERYONE could see that I am in a state of grace. Christianity says that grace is a gift, freely given that a person neither deserves nor can repay. And while I will try to live up to these gifts, appreciate them and somehow show my gratitude and gift back, there is simply NO WAY I can repay some of these gifts, so exquisite and overwhelming are they.
The first example is the Boston DaiBoken, a handmade Victorian Scrapbook sent to me, HANDMADE, with ribbons and pictures and pressed flowers (I have altered the photo specs to make sure no one is recognizable). In this book, each page is an adventure through a cemetery with (among others) the image of the Victorian “pure child” (sorry female in photo, that is just the term) followed by the ‘three sisters’ which go back to Greek times. Each page has a pressed flower and it is all hand made. It looks like it could be something bought by Conan Doyle to prove that fairies are real (see how I avoided the whole Lewis Carroll Photos). There is no way I am worthy of such a treasure, but am I keeping it – darn straight! But it is a gift which the care in making and love shines through. I can only be grateful as I wonder, ‘who am I to receive something like this?’
That is followed up by a gift and card from a person who I think talked about starting something like this when I was at Himeji Castle. And if this is the quality of your handcraft, your handmade cards and products, oh what talent! There is a carefully wrapped package in gold and ribbon. This is what I of the limited hand function call, “A puzzle box” since how do I get into it without EATING my way in. But I did and inside I find this Japanese style MINI book, about an inch long: with handmade spine, handmade covers and with a gold bow tying the mystery together. I pulled the bow, knowing I will not be able to re-tie it once it was opened to reveal handmade paper (I think) and stamps on each page, a thing of beauty, a precious object. Linda said it is like her Stamp Book from Japan only more beautiful and amazing. I said, “I can’t ever make something like this to return.” She said, “Me either.” I said, “No, my hands can’t stay still and do small work!” And she said, “I did scrap-booking and making Victorian Cards but this is WAY out of my league, I don’t think in years of work could I come close to this.”
So thank you both for these precious works, both leading to adventures of the mind, and the spirit. As it happens I received from a friend a gift to keep the tiny book in: a SKULL box with a Gothic E on it and a summer tank to match. Oh, my gosh, isn’t this so COOL! Seriously, with all this stuff I am gushing like a 15 year old (the ones who aren’t sullen and go, “Yeah, whatever!”), it is just TOO BEAUTIFUL to be...and someone really gave it to me? Of course that doesn’t mean I am not keeping it – there is a heavy case of the “Mine!” going on once I see these things.
Someone also noticed my noise intolerance and sent me FROM JAPAN (I think I have a clue who this is since there was no card), the Hello Kitty who suffers from noise. See her in her pain, then see her all happy and sleeping with these Hello Kitty ear plugs. Haha. I can’t wait to take these to the hospital next time I had to do an admit.
Also to go in the Special Skull box is this cool neck, head bandana which also has, skulls on it. I mean, unless people actually stop dying, I think this is a theme that is going to keep going on for a while. Thanks, mystery person for this (I know who you are but in case you don't want to broadcast it)!
But this, wow, I mean, wow. I don’t know if I deserve to wear it. A pendant of a goth woman wearing a Morticia Addams dress surrounded by candles. I couldn’t get the face to come out (since it is SO PALE, along with her clevage), but you can just see the eyes. It is made on an antique domino and may be of ivory or BONE. SWEET!!!!!!!!!
So that is why I am in a state of Grace, because really, this is like when people surround some kids on Peds ward and Xmas comes early. I can’t thank all those who have sent cards and presents enough because, you spent time and thought and effort for someone you never met, well except in spirit and online. But sometimes, though separated by distance, we are close in heart and all I can say is thank you and I hope that one day you can feel what I feel right now: That someone made me feel special, just because they could.
For those who haven’t seen it, here is the video of Victor’s from last weeks outings.
The Weekend Adventure from Victor Kellar on Vimeo. It has more of some people’s and less of others. This is likely my fault because I think I assumed Raccoon forwarded his photos and I don’t know if he did or ask, and the same with other people but it is a good watch and thank you Victor for the work he did on it. You know, it is days like this which erase all the specialists and the jerks and make me think that people are actually amazing. Here is to a good weekend and good times with the people we care about!
Thursday, May 29, 2008
Dr. N. (who by the way I called “Child Killer” to the staff, after reading about his making a 16 year old with a diagnosed failing valve and ventricle wait SIX months for a follow up appointment to talk about treatment): I made this appointment today to go over the upcoming tilt test.
Dr. McClung: Actually, I made this appointment because after almost a year and a half you still would not make a follow up appointment.
Dr. N.: Well, there were some tests done….
Dr. M: And, since those tests are over a year old when I was still fencing, I think they are about as useful as a doctor taking a medical test done BEFORE Christopher Reeve had his accident and planning treatment on it a year AFTER his accident….don’t you?
Dr. N: Well….the strip shows no “erratics” (they did a two second strip before he came in).
Dr. M: But it does show double beats, back beats…..
Dr. N: Those are all considered within the normal level.
Dr. M: Did you get the strip from the ER from Dr. G? That had quite a few erratics.
Dr. N: You were at the ER, I received no notification.
Dr. M: Odd, since MY GP got full notification, and since the hospital is only a few feet away (his office is 50 feet from emergency room – across the street).
Dr. N: Do you get chest pain?
Dr. M: Yes, two to six hours a day.
Dr. N: Well, that shouldn’t be happening with erratics.
Dr. M: But if you notice that my HAND is blue, that indicates lack of oxygenation, and since the heart IS a muscle, then lack of oxygen COULD cause pain, could it not?
Dr. N: Yes, but you shouldn’t be on a beta blocker.
Dr. M: That was prescribed by Dr. G. because looking at the visit schedule (the initial visit over a year and a quarter ago…and nothing), he could not confirm that I was under the care of a heart specialist, as the oxygen, erratics and other readings he was seeing indicated I should be, so he prescribed it himself. We found that as the heart beats slower, the more erratics appear and the more it hurts, and this masks that pain.
Dr. N: That is not indicated. Dr. G. is JUST some ER physician who has had ONE year! (What he meant was one year specialization training in heart – he has done ER work for MANY years and my GP worked with him and under him and respects Dr. G. greatly).
Dr. N: Unless you have been seen by Dr. R, Dr, V. or Dr. I (all who share an office with Dr. N) then you can’t say that you have a heart specialist’s opinion!
Dr. M: In your ENTIRE practice, how many patients have you had with MSA?
Dr. N: (pause)…none.
Dr. M: Dr. G. has seen to quote “hundreds of autonomic heart failure progressions” and he says that my heart produces enough volume, it is the vascular constriction which will cause strokes and death.
Dr. N: There is no way with that heart you could have a stroke.
Linda: There have already been TIA’s.
Dr. N: Who confirms this?
Linda: (she makes a list finishing with the top neurologist at the hospital who she says, “saw a seizure, an “R” seizure”)
Dr. N: A REND Seizure (something with neurological), which means that the effects last longer than 24 hours which is what determines a TIA. (meaning the effects can last days or forever). Do you have any swelling in your ankles?
Dr. M: laughs….keeps laughing as Linda pulls off the sock to show the foot swollen with blood that is simply seeping out under the skin.
Dr. N: “That’s not heart related! That is the micro-capillary system!”
Dr. M: “So when half of my body is one colour and the other half the other, that is the micro-capillary system?”
Dr. N.: Yes.
Dr. M: “And that is also where the clots and stokes occur, isn’t it?
Dr. N.: Well, yes, but only in the head.
Dr. M.: “And as you can see, 60% of my visible body has a compromised micro-capillary system….is it then not too great a leap to assume that parts we CAN’T see, like parts in the brain, might be compromised as well?”
Dr N.: Well, yes, but that has nothing to do with cardiology.
Dr. M: Well, who then DOES take care of the micro-capillary system?
Dr. N: Uh…no one! (Dr. M gives him a look) Well, Neurology, they have everything to do with the head.
Dr. M: Well, they don’t seem to be doing that well.
Dr. N: I talked to Dr. Atwell-Pope (groan from Dr. M) and I think that Neuropsyh unit would be a good thing.
Dr. M: (sighs) The Vancouver Neurology department admits that I have permanent peripheral damage to my neurological network, which may be degenerative, they admit I have autonomic failure which they hope is peripheral, other experts have confirmed central autonomic failure as well, you can see in my hands my level of oxidation or talk to the hospital and you think that the NEUROPSYCH unit would better my quality of life?
Dr. N: (aggressively) The Doctor in charge would know how to handle you. Anyway, we are here about the tilt table.”
Dr. M: Actually, the tilt table will only prove that I have orthostatic hypotension (a type of autonomic failure), is that not correct?
Dr. N: Well….
Dr. M: You use nitro to accelerate the process and you want to observe if there’s orthostatic hypotention, is there ANY other use for a tilt table test?
Dr. N: No…..We are doing it because Dr. Atwell Pope requested it.
Dr. M: Actually I requested it nine months ago, but you YOURSELF, doctor, verified that I had orthostatic hypotention, in fact EVERY doctor has verified it EXCEPT Dr. Atwell Pope. One made a little chart and everything, do you want me to have it sent to you? YOU verified it on our first visit.
Dr. N: Rushes to file, flips it open, read the letter (which by the way he wouldn’t tell me the results that day, much as he didn’t tell me any results of blood pressure he took today) and turns, “Well there was a drop in pressure.”
Dr. M: Is ANY treatment going to be initiated from this test?
Dr. N: No.
Dr. M: Then why have it?
Dr. N: (a bit angry and sulky) Now the angiogram, that could have been useful?”
Dr. M: Is that the one where you drip liquid metal through my heart?”
Dr. N: Yes, you never did it.
Dr. M: (Yes, I know, which is why he refused to see me!) I did not have that because no one would follow the medical protocols which are in the medical journal article I gave and is sitting IN THAT FILE (points to his file). When you want to follow protocol and call for an anaestheologist, I will do that test.
Dr. N: (turns to face away) That’s NOT going to happen!
Dr. M: So, what CAN you offer in treatment?
Dr. N: I can give you a two week event monitor.
Dr. M: Okay
Dr. N: Even if it is AFTER the event, you need to push the button.
Dr. M: So it doesn’t record unless I push the button?
Dr. N: No, and if you have a seizure, or (getting quite excited), If your heart stops completely! Remember to push the button.
Dr. M: (thinks to herself: “If my heart stops completely I will have a lot more things to worry about than a damn button”) Okay, the central autonomic is the one that sends electrical to the heart, correct? And we do know that I have at least two A/V nodes.
Dr. N: No, we don’t have that verified.
Dr. M: Excuse me?
Dr. N: (getting puffy) Until I run a catheter from your groin INTO your heart we do not KNOW how many A/V nodes you have…….but the holter tests (24 hour tests), show that you have heartbeats which originate from the opposite ventricle.
Dr. M.: Which means I have P.A.T.
Dr. N: That hasn’t been completely VERIFIED
Linda thinks: (“What a little puffed up hair splitter, just to try and be RIGHT”)
Dr. M: Okay….Well, when the beats become too erratic, Doctor G. at the hospital has offered to admit me and put in a pacemaker to keep me alive. Is that okay with you?
Dr. N: (Gets a bit haughty): “Well, that works, though you can tell Dr. G. that once you are admitted that I can put in the pacemaker.”
Dr. M: (Stares at Dr. N). I’m sorry, but I would be going in for a PACEMAKER because my heart wasn’t working, I’m SORRY but I DON’T HAVE TIME TO CARRY NOTES BETWEEN YOU TWO when you are ONLY 50 YARDS away!”
Dr. N: ……I need to see another patient! (Leaves the room)
Dr. M. goes to the front counter to the admin person. Who says, “I think you are getting a two week monitor…it will be at the Jubilee.”
Linda says I was slightly loud at this point.
Dr. M: “Oh is that what CHILD KILLER, I’m sorry, that’s just his only RateMD name, is Dr. N sending me to the SAME hospital that he just told me was full of doctors who are under-trained and incompetent?”
Admin: “Ahhhh, I don’t know, it may be another department.”
Dr. M: “Did you know (apparently the ENTIRE floor including his colleagues and all the people waiting could hear me), that when a doctor FAILS to comply with the standard protocol for a procedure after being shown it, not once but twice that it constitutes grounds for a complaint AND action from the college of physicians?! (I was talking about his refusal to treat due to the needle phobia)”
Dr. M. Wheels off, “What a DICKHEAD! A year and a half for a fucking tilt table test he confirmed at our first…and only meeting! And he has NO patients with central autonomic failure? And HE is the expert?”
Dr. M – aka Elizabeth was going through what is known as grieving, or rather through my ANGER stage because now I have….no specialists (since my complaint with the college of physicians on various breaches of protocol by Dr. Atwell-Pope not limited to patient confidentiality disclosure when she gave personal information beyond the test results to the TECHS in Vancouver – the college does not allow any complainant to be treated by the doctor they are complaining about, and since there are only 4 or 5 neurologist with hospital privileges in Victoria, that will be…well, difficult)
Did I want to come and write another “Hell Specialist” visit, or the fact that I lost my voice (gee, I wonder why!). No, I want to write about good things, but now at least, I know that Child Killer….I mean Dick Head….I mean Dr. N is not likely to do anything since he feels he is always right unlike Dr. G who said, “we are starting you on a very, very tiny beta blocker because….with your autonomic system we literally have NO WAY of knowing how your body will react. Then after we see the results we can see if that IMPROVES your quality of life or not.” Do you understand why I like Dr. G. better than, Dr. N and his: “I don’t feel you should be on beta blockers because I didn’t prescribe them to you. And no I have no experience with autonomic failure but I will remain acting as the ONLY authority on you as a human being.”
Well, I promise, unless the fever returns a happy and cheerful post tomorrow. The bad news is that now I currently have a) no treatment plan for the future, b) no accepted plan for dealing with increasing pain, c) no specialists and d) a GP who WANTS specialist to instruct him on how to proceed and while I like that he calls them “The FUCKING specialists in this CITY!” I still think doc, it is time to take a risk and go solo. Because quite honestly, you are all I have.
Wednesday, May 28, 2008
Well no. Except with chronic and degenerative conditions there is not A+B=C, there isn’t even always A+B=Gorilla on your chest! I take Echinacea twice a day to help make sure I don’t GET a fever. And I haven’t had one for over two years. I take aspirin every day to ensure I don’t have TIA or seizures. But if I went and did,,,..Ice sledding and had a seizure, the question would be...WOULD IT HAVE BEEN WORTH IT? But I think the question should be: “What is the value of a life, if after ALL the precautions you have taken, you are still too scared to LIVE IT?”
I took what I believed to be reasonable precautions against infection. I now believe that I got a cold which started ended sometime Sunday, ending on Monday. That is what the PHYSICAL evidence of how colds progress demonstrate: Sore throat, slight fever, feeling better, nose fills, sinus cavity feels as if it will explode, cavity drains, person better. That all occurred, and finished by Monday...well except the last one. Because it seems that in pushing my body, myself, I learned a “new trick” that my body can do. After a 14 hour medical appointment without rest where a nerve conduction test is performed up to six times in succession, and I get no sleep, that pushing some more a few days later creates what I term an “unbalance.” Or rather, instead of ME having X amount of spoons, to spend on what I can do, it seems my central autonomic system has a certain number of spoons and when pushed, it just sort of lets go of certain things, like my heart getting lots of erratics (we knew about that). And now, during periods when the temperature is hot already the ability to maintain function over my body temperature (which occurred once for two to three days early on last year actually). So yesterday I get a fever at 1-2:00 pm and I wear the ice vest but I am not as burning hot like the previous night and don’t need extra ice. Tonight we will see if I need the vest at all and how long. And we will see if the fever, which returned at 8:30-9:00 pm returns tomorrow at 11:30 pm or not at all.
That’s the boring medical stuff that I have devised because I REALLY don’t want to do this all over again and again and again. But more importantly should I take risks and what are “reasonable risks?” There isn’t anyone around with a big book saying, “This is how you should change your lifestyle and these are the benefits.” To be honest, the medical advice I have been getting is more along the, “Try to keep yourself out of hospital long enough so that we can do more tests on you.”
I will say it plainly: I do NOT have control or a clear idea how to maintain my condition. I used to, then my fingers changed colours, then I had a bunch of TIA's, then I got a long fever, then I got heat exhaustion all the time, then I got heat stroke, then I went into shock three times in 24 hours. I DO NOT KNOW. And so far, no one else seems to know either. Linda was on the phone today working with the people on the medical alert bracelet to put the “most important” things that would likely kill me. That’s the phrase they and Linda used, “Kill her.” Turns out they didn’t have enough room. So we had to make a choice, then realized we forget to put “heat intolerant” so called back (now ever more things NOT on the braclet, should I get two?).
I want to get better. I went for a wheel down to the video store on Tuesday because medical journals say that total rest during an cold or flu isn’t the best, light exercise can help. Except my cold was over, and I was just stressing my autonomic system, using up a “spoon”.....maybe. See, that’s just a working theory. I want to figure out how to get my system to have more spoons so that I don’t go into heat exhaustion (I think having an indoor area where I don’t strain my body 24 hours a day to regulate me WITHOUT sweating would be a start). I want to do things. I want to write, to wheel, to get outside, to get into a vehicle for a reason OTHER than a medical appointment. And yes, every single one of those desires is a risk. I want to take trips, I want to last LONG enough to take some trips this fall. And yes, pushing myself like I did in Japan WILL, no question, WILL, make me too ill to continue. So I have to figure how much to push. Those are all risks. I take risks very lightly, and I take them very seriously. Because one the one hand, what is the worst that could happen: I could die? On the other hand, if I don’t balance this correctly, the party is over! I guess it depends how much I want to do something on how willing I am to bend that envelope and find out, in my current state, what the result will be.
Which means, I will do what I do. And yes, that may not be things you would do. But then again, isn’t that what people first consider almost EVERYTHING that I do?
So was it worth it? I have a picture of me as the sexy wanton wheelchair girl. How could it not be worth it?
See, the only different between ME doing things and YOU getting on a plane is that you know your chance of dying, needing medical intervention or having something horrific happen is 1 in a million or higher while MY chance is about 1 in 5 or less. So do I do five things, and have five memories and try to figure out what NOT to do next time, or do I have ZERO memories, and live in a little shell. I dunno, I kind of think that I would want people to know whether I am alive or dead, and if I ACT like I am dead before I am, then how would they tell?
I am dizzy, have lost my voice and seem weak, as in, if sat upon by my teddy bears, would I be able to move? I felt somewhat that the temperature had regained control before the nap but wanted to have a two hour nap and see how I was afterward (since the fever seems to spike in the afternoon and after the nap). So I called Linda and work and rasped that she could stay late. She said that she would be home around seven as she would work late and pick up groceries. I said that I wasn’t sure if I would be here as BADMINTON starts then (What! What? I’ve been almost better for a whole like, 4 hour already!). All I got on the phone was an "oooooohhhhhh!" She thought that the urge to talk which would strip my throat and the urge to not "just do one game" would be too much and did I really want to go back into the mental and physical hell I had just emerged from?
Well no, but, but….(insert plaintive voice) badminton?
I agreed I would wait and that while LOGIC dictates waiting a 24 hour period to see if waking up or getting hot is dealt with in a normal fashion instead of returning to a fever. After so MANY days of sleeping, sleeping, pain, pain, pain, pain until I fall asleep and waking up in pain. That actually DOING something sounded a lot more like a "non-fevered" Beth thing to do than "Resting and taking it easy." Sigh.
Anyway, thank you for all your support and if anyone does that popsickle suppository, let me know it goes, so I have some data for next time. I expect to post tonight, as this is just a, "Beth is not a human crock-pot" post.
Tuesday, May 27, 2008
You can see some of Maggie’s pictures HERE.
You might recognize the wrought iron work in this picture Elizabeth took amongst some of Maggie’s pictures too. It’s the grave of Sir James Douglas, a famous forefather of Victoria. A number of local landmarks are named after him.
Tammy at I Can't Have Anything Nice shares some of her discoveries at local cemeteries near her home. Check it out and give your opinion on her alternate theory to the thirteen graves.
Racoon went to see the Memorial Cemetary on Memorial Day but it was closed. Go figure?! He had to come back another time for this photo.
Two of you went to see some gardens…
Saraarts was a very busy woman as she went to both a cemetery but also to a park.
Lene over at The Seated View spent her weekend taking her delight in her 2 and a half year old nephew and niece and family, which can be read about, along with a movie of 2.5 year olds with better spanish than I Here.
Kathz tour of ArkWright’s Mill - a historical millworks village. She got to see a fair amount of the outdoors too.
Moving in to more indoor pusuits was sharonmv working on organizing photos for a collection, And FridaWrites took in some swimming and a movie;
Heather went shopping (one of my favourite past-times), and;
Neil tried not to injure himself too much while learning how to maneuver poi.
Maryanne, Neil's partner, tried out her new loom.
Elizabeth asked me to fill in for her again tonight. She was feeling somewhat better this morning – well enough to have a shower, roll to the video store and make it back in one piece. She hadn't been outside since Saturday and wasn't going to be able to get to the video store for a few days so took a calculated risk and when to pick up some DVDs. Her fever had gone down to the level it was on Sunday. Things were starting to look up. But then she went for her afternoon nap and woke up feeling worse. She has slept 12 of the last 24 hours.
She asked me to thank everyone for your input and advice. She’s taking the ibuprofen orally (said thanks, but no thanks, to the suppositories - I'd say the same if I had a choice) and has been wearing the cool packs pretty much constantly all day.
Elizabeth: "My fever is getting worse."
Linda: "You don’t feel very hot." I touched her chest and face and it wasn't that hot. But then, I didn't take into consideratin she had been wearing cold packs for 24 hours and burning through them very quickly. As her normal temperature is lower than mine, her fever was about the same as my normal temperature.
Elizabeth: "My eyes are burning and my head hurts. That happens when I have a fever. My temperature is up too." She explains the stuff I can't see in hopes I'll understand that she really does have a fever.
Linda: "How about I run you a warm bath?" I'm thinking we need to get her temperature down and we could start with a warm/tepid bath and gradually make it cooler.
Elizabeth does not like that idea. She's been covered with cold packs all day and the thought of being submersed into more cold does not appeal. She remembers that I've never had that experience before nor have I put a cold pack on my chest or worn her cooling vest.
Elizabeth: "How about you take off your hoodie, t-shirt and bra and take the cooling vest out of the fridge and put it on." She asks, trying to help me understand what she's going through.
Linda: "Okay." So I did. It’s like putting on a wet bathing suit after it has been lying around for an hour. It was cold and clammy. I'm beginning to understand how she's feeling about these cooling devices and why she looks at me with dread sometimes as I approach with one.
Elizabeth: "How would you like to have that on 24 hours a day and sleep with it like I did last night?"
Linda: "Well, if it were a summer heat wave I don’t think it would be too bad. But if I had a fever I don’t think I’d like it at all." It made by boobs cold just wearing it for 5 minutes - what would four hours do to me? Note to self: take it out of the fridge well before Elizabeth needs it.
Elizabeth (taking off the towel wrapped around the cold pack and reapplying): "If it’s just cool (wrapped in the towel) it doesn’t work. It’s only when it hurts that it’s cold enough. And the fever still won’t break."
We compromised and an hour ago she moved from the study to the living room where we have the air conditioner blowing steadily. We thought we’d try cooling her off this way as the study generates heat from the computer and the air coming through the window wasn’t all that cool.
We decided sitting in the hospital in an un-airconditioned room for 5 hours didn’t seem like a good idea. If we need to, we’ll go to our GP’s office and see one of the doctors there.
Will keep you posted tomorrow on her progress.
Monday, May 26, 2008
Then as I got ready for work I wondered if this was a good decision – leaving her home alone. She asked me to cancel her lunchtime home care as she didn’t want to bother with human interaction. Would she take care of herself? (Turns out she didn’t have the neo-citran hot-lemon drink nor any food that I can see.)
Throughout the day I’m afraid to call her in case she is sleeping or unable to speak because her throat hurts too much. Thank God for email. Even short responses that say she’s just sitting and zoning out and could I mind the blog today answering comments, posting links and such? Sure, anything to help.
We finally had a chat shortly before 4pm. She sounds horrible and says one nostril is dripping steadily. She’s scared because she doesn’t know when or if her fever will ever break. Me, too. I’m also feeling guilty for leaving her on her own all day.
“Shall I come home early?” I ask.
“No, I’m going to nap now. There’s no need” she replies.
Okay, I think, but I’m not staying that late tonight. I’ve got things to take care of at home: get food down Elizabeth so that she has energy to fight this illness off, working on the blog, taking care of Elizabeth.
Will I have to draw a tepid bath for her to soak in, in order to cool her body down? Boy, is she ever going to hate me for that one! Her parents used to put her in cold baths as a child because she often had high fevers.
It’s nearly four hours since that phone call and she’s still asleep. Now I’m wondering when she’ll get up. And will she ever be able to get back to sleep tonight?
But then there is a more sinister fear… the leading cause of death for people with Multiple System Atrophy is pneumonia. What if her illness turns into that? I'll try not to think about that one. I hope she just has a summer cold and will get better soon. She feels it’s more than a summer cold. Maybe it’s a flu? What’s the difference between a cold and a flu anyway? Do they both have fevers? Should have listened to Mom a bit more – might need to call her for clarification.
Here’s hoping her nap will have done her some good. Oh, I hear the bathroom door closing. She’s up! One fear down, a few more to go.
Elizabeth (8:30 PST): Ha, my fears are slightly different (I knocked for help, but she did not hear me, too many air conditioners going at once). I do have a full bladder because…I don’t sweat. A continuos fever and I don’t sweat. In fact, I thought on the edge of better yesterday. I had passed what I thought was the high fever stage and then a full congested nose, which indicates the contagious stage as white blood cells and virus are cast off. Nasal cavity started to drain. Thus all better, the fever only .5 degrees or so.
Then, suddenly, it spiked, at 4:00 am, and never let up, a higher fever and no sweat. I don’t sweat. How do I then avoid brain damage? My sheet is bone dry because I don’t sweat, but every hour, every forty minutes, Linda was putting ice on me, or giving pain pills or valium so I could sleep. Sleeping with an ice block on my chest. And I am still too hot. My nose bled, not because I was blowing it but because my blood pressure spiked. My fevered body cannot keep all the systems stable.
I woke, after over 10 hours, the fever was the same, we had a cool spell so I opened the windows, turned up the fan, I needed to make that room a fridge. I cannot cool my body off. How do you break a fever in a body that does not sweat? If the fever was down and then spiked, does that mean I am immune compromised? I don’t know. I haven’t had any contact except maggie and Cheryl, not since the Ferry on the way back from Nerve conduction (Wednesday).
I slept another five hours, and now my nose is not bleeding but my heartbeat is high and erratic. Very erratic for someone who has been awake only three and bit hours. How do I break the fever? It is 1.5 degrees high now, down from earlier, but it will not break. The room must be kept cold. The heart hurts, it must be more erratics. The only solution used to be sleep. I do not think sleep is working this time.
Sunday, May 25, 2008
Elizabeth is sick and in bed, and Cheryl is on her way home, please read the post below if you haven't already and as we get more links we will link to all the things people did during their "May Madness" fun weekend.
Thanks. And I hope you had some fun too.
Maggie's Link to photos from the Cemetery on Saturday is HERE
Tayi at Waiting for Rain, went out, and ended up in pain; pain all over, including a sunburn. But she put up a picture in which she achieved what she has been wanting to do for a while, create art about pain. And in her post titled, Count every beautiful thing we can see, she has a picture: Pain is Beauty.
Veralidaine at Stirring the Pot also went to visit a cemetary and shares photos of spring buds.
And FridaWrites went swimming, being careful to keep her brace dry, and to a movie.
Thanks everyone for sharing your experiences and supplying photos if you could.
Well, you may recall Elizabeth had a hellish week. Elizabeth has a tendency to run away on birthdays. But after many, many volts of electricity, she stayed put. This year I decided Saturday would be her birthday and asked her new family/friends to share it with us. So Cheryl and Maggie hopped the ferry to spend the day. There was a discussion between where to go: a) Dead People or b) Squirrels. Dead People win!
Elizabeth is always leading the way into dubious behaviour. Remember Elizabeth’s call to action to do something fun this weekend? Well, she wanted us ALL to go goth (or wear corsets at the very least). And so, we arrive back from the ferry to see Elizabeth working on her five inch spike dominatrix boots and her lace shrug. With her black velvet corset and skirt she totally embraced the inner goth going slut. Here she is, trying to pick up customers in the graveyard with her "come hither” look. It somewhat disturbed me that a wheelchair could look so sexy and down and dirty with the right attitude within.
Meanwhile, thanks to Elizabeth’s bad influence, I bought this spring my first ever corset and finally it saw the light of day. Elizabeth is saying here, “Show the folks what corsets are all about!”
Maggie hadn’t brought dress-up clothes. That stopped Elizabeth for about 2 seconds, as she opened up her “tickle truck” and corsets, skirts and arms warmers spilled out. I (Linda) ended up with to elbow length lace arm warmers that came in handy for the “Sex Kitten by the Mausoleum” look. Not that I originally wanted that look, but when Elizabeth is shouting, “No, no, don’t get up, work it, you’re so sexy, all these dead people want you, woo hoo!”
Meanwhile Maggie emerged from her Ranger/EMT/Anthropology shell to look drop dead gorgeous in spider web corset, a mini plaid skirt and arm warmers to match. As Maggie is straight, we were trying to hide our salivation, that is until she started talking about the costume party she went to in her genuine Catholic Schoolgirl uniform and pigtails. (Cheryl and Elizabeth say, “Yum Yum!”). Elizabeth was slightly put out, as she doesn’t buy her corset to have OTHER women look better in them, but since Maggie was “quote” ‘doing it for Elizabeth’s Birthday’, she put up with seeing her ballet slippers finish the outfit (Elizabeth: Sigh! This is when is would be nice to be petite not just FLAT and skinny.
There has always been ongoing teasing between Elizabeth and Maggie about Elizabeth trying to turn Maggie into a lesbian (this is entirely in Maggie’s mind…..maybe). So while Maggie was getting ready they were bantering to each other. “See, I knew you just wanted to get me naked,” said Maggie when she was given the corset. Maggie protests a LOT but then, when we arrived at the entrance to the Mausoleum Maggie invited Elizabeth to take a picture with her saying, “Hey, this might be one of the few times you’ll get to lean up against my breasts.” Hmmmm, who is teasing who here. Particularly as later, Maggie would be placing her birthday present into Elizabeth’s groin AND undoing both her corset AND her bra! But I get ahead of myself.
We attempted to foist a genuine boned under corset on Cheryl, who has worn them in Historic Parks for her job. She said there was no chance she’d be able to fit into a boned under-corset without eight inches of space in the back. Elizabeth’s eyes lit up and said, “Oh, that a great place to START!” At which point Cheryl backed away and refused to go near the corset again. So we gave her a pair of Elizabeth’s armwarmers to go with her new Deadhead shirt.
It was a lovely day for a picnic in the cemetery and Elizabeth wasn’t going to let a little fever and sore throat keep her away (and apparently, neither did we?). After a brief period of time Cheryl and I nominated Maggie as the queen of camera whores because she had 3 cameras to herself which was as many as the rest of us had put together. Also she tended to wander off and get a little TOO into being one with the tombstone.
One of our favourite tombstones was dedicated to Cashew and Peanut. Who would name their kids that? I’m pretty sure people weren’t allowed to bury their pets there. Elizabeth immediately went back to the “disability angel” and got the picture she wanted. So between Elizabeth going all vamp and gothy on us and with Maggie in full camera whore mode it was an INTERESTING time keeping track of people.
We pulled out the Japanese handmade umbrella and let Elizabeth…well, be ELIZABETH. Which means a lot of hamming it up and some genuine smiles between the, “Oh get me in my magic girl pose!”
Of course, Elizabeth has this POWER, which is to get people (or birds and animals) to DO things that they wouldn’t always do. So it wasn’t long after I was laughing at her doing her “Magic Anime Girl Transform!” poses before, I (Linda) somehow found MYSELF doing Anime Girl action and transform poses. Thank goodness Elizabeth hadn’t snuck in a sparkly wand.
Elizabeth, when she takes pictures like people to laugh. She tried various sexual questions and eventually found one that worked on each of us (really, we were kind of GLAD the cemetery was empty). I’ve been called an innocent and a prude so I can’t tell you what it was that made Maggie look like this (Elizabeth: I can, I just suddenly remembered that I needed some advice on buying a strap on)
Cheryl on the other hand got zinged with a “So, what can you tell me about Threesomes!” to produce this picture after which she said, “I’m not saying.” Which made us all much MORE interested in what she might be able to reveal to us about threesomes (Cheryl: “They’re distracting”).
Elizabeth, though she doesn’t actually have a good oxygen supply still acts like a nine year old high on pixie sticks when in a graveyard. So she is already fighting her way to another tombstone and stroking it like a kitty, leaving Cheryl to clean up the photography supplies.
After an hour of rambling we found a shady area, laid out our black tablecloth and ate Elizabeth’s birthday chocolate mint cake. Maggie regaled us with her tales of how exactly she knew SO much about gravestones, which it turned out she did an anthropology project on them. So we debated about people who overcompensate in death and how it is the LIVING who end up deciding how the dead are remembered. The cake was enough to sustain us for what I thought would be another 30-60 minutes to explore the rest of the cemetery. Didn’t quite work out that way (Did I mention Maggie wanders off and Elizabeth gets hyper and far ahead of us?). It was a great cemetery and Elizabeth used her powers to get a crow to provide some performance ambience for us.
Also, we sometimes managed to get two or three of us together, which was a picture worthy occasion, especially with such NICE tombstones. I mean, who can not love a grave like this?
Fifteen minutes later we were pushing Elizabeth up through the grass to another mausoleum when she said, “I’m feeling funny, something is happening.” We tried to get her to the shade as soon as possible.
She wasn’t sure what was wrong and was sort of just staring at her hands, but we were thinking she may have got a little too hot. I started taking off the boots at her request. They’re pretty complicated with about a dozen buckles on each boot and really, really long laces. I was getting pretty frustrated by the laces but finally got one boot off. AFTER I get the boot off, I noticed a zipper that went all along on the inside seam. Geez, that could have saved me some time! The second boot was a lot easier to take off with the zipper down. Only had to tug a little to get her ankle out. While I was holding her calf in one hand and the boot in the other I had to gulp a little when I realized how small her calf and ankles were now. They felt so fragile compared to a year ago. I had been tugging on her boots to free her foot and suddenly I was afraid I’d break her ankle if I didn’t take them off right.
Meanwhile Cheryl and Maggie were cooling Elizabeth off with her coldpacks. Maggie had bought Elizabeth a pink kerchief with skulls and she put it to immediate use wrapping a cold pack in it to minimize the shock to her system. She put it in one of the few working cooling points. So up came the skirt, and the ice went into the groin. Elizabeth didn’t notice anything. Which meant she was NOT well. Cheryl and Maggie also kept her upright, loosened her clothes, and tried to keep her breathing. Elizabeth drifted in and out of consciousness. In one of her better moments she asked if we could lie her down on a grave (she had been in her chair and was having a hard time with her diaphragm). I laid out the black table cloth to protect her clothes from the grassy grave. We were pretty sure the Brandts (the grave she laid on) didn’t mind us using their area. It’s not like we’d hear their complaining 6 feet under. Ironically, when Elizabeth would come too, she would make “Take photo” motions with her hand to Maggie, I think as she wanted Maggie to keep enjoying her trip. Maggie turned into a bossy older sister and told her, “That just isn’t going to happen.”
We spent over an hour on the grave. I can’t remember how many times she’d stop breathing and we’d have to tell her to breathe and we’d all be searching for some sign of her diaphragm moving. For a while Maggie had to put some pressure on one lung which helped with the breathing. In the moments between unconsciousness when Elizabeth realized we were all there with her instead of taking pictures she’d start talking and tell us she was fine and several times struggled to get up. She was not fine. Everyone knew it but her!
Her oxygen levels go down as she talks so we all told her to stop talking. Didn’t work. Eventually Maggie just pinched her lips shut in the middle so she didn’t have much choice. A finger to the forehead provided enough resistance that she couldn’t sit up. Nice to see I wasn’t the only one that could be bossy. Maggie’s favourite line to Elizabeth was, “I can see your lips and YOU can’t….they’re blue.” Which seemed to shut Elizabeth up for another couple seconds
I appreciated having Cheryl and Maggie there. Having two EMT’s around gives me a sense of security and a little less reason to panic when things go wrong. I will admit that there were moments where I was thinking we’d have to take her to the hospital, if we could ever get her out of the cemetery. How appropriate it would be for this goth chick to end her days laying on a grave in a Victorian cemetery.
Fortunately that was not to be. Eventually she was breathing regularly, talking and some of the chest pains subsided. We got Elizabeth back into the chair, but by this time, she was in the cooling vest instead of her corset. Cheryl told her that Maggie was surprisingly good at the one handed bra removal for a straight girl. Elizabeth zipped down the cooling vest to see her bra hanging limp and said, “I’ve been MOLESTERED!” Then after a few seconds, “I’ve had Maggie touching my breasts, and I missed all the best PARTS!” Elizabeth was VERY disappointed to learn that Maggie had taken her out of her corset and was fondling her body and she didn’t even know it. This topic was revisited often for the next ten minutes, “Why do I always miss everything” she complained, “Some birthday present!”
We wandered back, with Maggie STILL disappearing to take pictures, while Elizabeth’s crow showed up again for her to take another picture in Sepia. Which was appropriate since she had problems seeing with vision and colour.
We managed to finally all get through the cemetery and back to the van.
On the way back, Cheryl and I were on the hunt for a suitable epithet for Elizabeth (not that she was going to die on us today and when she does she won’t have a tombstone anyway because she wants to be cremated). The best one we came up with was only one word “REST”. Pretty good, huh?
What started as an hour walk turned out being a nearly five hour excursion. We picked up fish and chips on the way home and watched most of the US unreleased Ghibli movie Pom Poko. We decided that it was NEVER going to be released by Disney, not just because of the many scenes of Racoon children performing Eco-Terrorism. But there were the many, many, many scenes of Racoons transforming their testicle sacks into various objects (as well as lots of testicle shots while the Racoons partied, which was about every night). Maggie and Cheryl sort of decided that maybe Racoons have transformed into humans and now reside in Frat houses. While Elizabeth seeing a “Racoon Master” transform his testicles into a giant bull frog, said, “Oh yeah, THAT’s the image I need burned into my brain right before a nap!”
We didn’t finish the whole movie but I took Maggie back to the ferry. Cheryl helped Elizabeth get ready for a long-overdue nap while I was out.
Elizabeth is still feeling pretty rotten (the sore throat has worsened, her fever has gone down a bit and she’s in a lot of pain) but we did go out and have fun. And as strange as it is to say it, with Elizabeth having a fever AND almost dying, I think this was one of her best birthdays yet.
PS – since it is 2:30, and all is quiet in terms of comments and emails, we will have a mini post for tomorrow, to give everyone a chance to read and see all the pictures (blow them up by clicking – it is fun!).