Pissed off, knocked down, can't piss and more joy.

Pissed off because I don’t get to go boxing today. Because I didn’t sleep until 9 am. Because, yeah, bowels not a functioning. Thank you again for the manga and the books since it was not hard to imagine, like in BoneShaker (Steampunk novel), living in a toxic, zombie infested Seattle at 5 a.m. with the sound of rain and howling above me, plus my pain and a little delirium (That book is headed out to ya, V!).

This has been a bad week, two days of heart erratics, the fever returning, pain so bad that, well, people could tell I was in pain, even when I was smiling (it must be that, “I am going to eat your children” smile that pain gives me instead of the “Aren’t we having fun now?” smile). And seizures, lots of seizures, and going blind with neuro blindness, again and again. And paralyzed, and blood from nose and mouth, and more seizures. It knocked me, in my grand plan from stage 4 all the way back to stage 2 (from ‘Going out every week and exercising weekly to build reserves’ to ‘Have no reserves, try to maintain and stabilize life functions, work toward gaining reserves’). That means bed days (or at least hours!). It is why I blogged about Squirrels because while Squirrel and Seizure both start with S, one is cute, fuzzy and neurotic, and the other leaves you with bruises in odd places.

I wish in some ways I could not make what I have been going through since late Sunday sound like the flu. But how do I list what a couple hundred minutes of seeing the back of your eye sockets while your body danced like being whipped with piano wires feels like? This morning I was so weak it took me 1 hour and 20 minutes to pee. Well, to pee AND stay conscious. Either way, not getting all that I want to get done, not sending emails, not answering comments, not doing enough. And since I am not getting better but the other direction, going to have to say, ‘Lonely, love some email but may at best send back a couple lines’ (who wants to bet I write 1000+ words!).

So the disease is kicking me around like a home-made soccer ball this week (Soccer theme today). Got to try to look past that. Which is hard in those days of bad, bad pain, when my arms and body were shaking from the pain, and I was maxed out on painkillers, and seeing anything beyond that was hard. See me at a Spring Market was hard. Seeing me going to Sakura-Con was hard. But Sakura-con is now (insert number of days until April 2nd) away and I am going. Or my body is going – Sakura-con, the corpse tour! No, let’s not think thoughts like that. I will be animated, since Seattle is the town of zombies (BoneShaker again).

I am also pissed as the first thing I see when I turn on my computer at my home page is this story:

Paralyzed Soccer Player walks again

‘With Positive Attitude and Hard Work..”

11-year-old Mackenzie Saunders was playing soccer, got hit, then got up and played, at the halftime started feeling numb in her legs, later taken to hospital. Cracked vertebra with a blood clot (and swelling around the injury). They (at hospital) could not find a history of a lower back injury causing paralysis in girls soccer.

Mother says: “She has never asked ‘will I be okay?’ She has said, “I will walk again.” (I don’t think there is a SCI who hasn’t said that.)

Interviewer asks “When that day comes?”

“I guess I just want to hang out with my friends or …(thinks)..play a game of soccer).”

She walks out with a limp. “It is her attitude that is the story.” (well since she got an MRI within an hour of getting to the hospital, and still gets constant therapy that probably helps too – A friend with the need for admitting into the hospital due to his heart told us that now the wait list for the MRI in this town, is 13 months. He says his heart could go at any time but is waiting for the specialist test and referral, and may not get the operation “until Christmas, who knows.”)

Neurologist: “You really, really have to look in the MRI, and you can see that little fracture and there was a little, little fracture, and a little bit of hemorrhage and that hemorrhage put pressure on the cord. And THAT is what started to cause the neurologic problems.” (on questioned making a ‘full recovery’ the neurologist said that she is glad the girl can ‘get around as well as she can AND the fact that she is young’ as ‘nervous systems repair themselves much better in a kid than an adult.”

During this the Camera is on MacKenzie with bold caption “PARALYZED SOCCER PLAYER CAN WALK AGAIN”

We are not told what her treatment was but it is alluded to in the interview by the medical specialist as “Intercede immediately and doctors, even if they don’t see these injuries very often, have to think sometime ‘outside the box’ and THEN you get great results...”

One leg has regained sensation, one has a brace on the lower leg.

Interviewer, “So next time I see you…maybe the olympics?”

CRASS!

First off, the Paralympics start tomorrow, so a –10 out of 10 for that final question (Sorry all you Paralympians, too bad you didn’t work hard and have a positive attitude!).

This story is interesting because it manages to encapsulate so much about the popular ideas about wheelchair users, paralysis and SCI while reinforcing propaganda instead of information (‘Thin blonde girls are happier!”).

Problem 1: No education at all on what an SCI is, or the types of paralysis. All we are told, (in subtitles too) is that she was going to have to use a wheelchair (they don’t even make clear if she had paralysis complete or loss of feeling), and now she can walk: due to the ‘American Dream’ of hard work and a positive outlook. (BARF!)

Problem 2: The ‘will to power’ presentation of wheelchair use and the implication that all wheelchair users could, if they were just perky enough and worked hard, could walk again. Except that spinal cord severing and a blood clot pushing on nerves are different, much like a Gillian-Barre paralysis and a SCI paralysis are different. And I don’t think there is anyone in a rehab center who hasn’t said, “I’m going to walk out of here” (unless it is amputation, in which case, there actually is a decent chance they will walk out of there).

A meta-study I referenced in an earlier post showed that perky, positive attitude cancer patients had the EXACT same percentage of survival based on treatment as the "Fuck this and fuck you too!” ones. It isn’t the image able body people WANT, but it is the scientific facts. Motivation comes in a lot of different flavors and some of it is optimistic, and some of it is, “Damned if I quit!” – one makes the front page of the news, one does not (even if both end up walking – because society doesn't want to hear, “I thought the doctors were fuck-ups, I thought the whole system was a fuck-up and yeah, it hurt like an acid bitch spitting venom but damned if I was going to let someone tell me what I do. What am I going to do? Fuck like a rabbit! What did you think this rehab was for?”) Though oddly I remember them asking the oldest living man once how he did it and he said, "By smoking a cigar and drinking every day!" Hmmm, think that health book would top the charts?

Problem 3-10) Chronic conditions aren’t a ‘pause’ button and the more society reinforced that, the more invisible we will become. MacKenzie COULD hang with her friends; the fact that her friends were not hanging with her at the rehab center says something. The fact her parents or her never thought that, only, “Must walk again and resume the EXACT same life I had before this happened” and they are REWARDED for this, makes failures of every other person who ‘gave up’ (That IS what wheelchair use is depicted as in this story, in society – with the words ‘tragic’ lingering around there somewhere).

It was an unusual injury. She happened to get very fast, very good medical treatment and was in a very high end, and expensive rehab program immediately. That makes me happy. Is she a typical spinal cord injury, wheelchair user or paralysis patient? No.

What has she learned from this? About different types of SCI’s and paralysis? About different friends she made who use wheelchairs? About adaptability in her home? Who knows? Because if she has, that’s not what we, and all the other families and teens, and tweens are hearing. They hear, ‘Just be perky, and work hard and all will be well.’ Oh, if we only DID live in a world like that.

Sure, I had my denial too, and could have had a stroke, oh wait, I DO, regularly. Part of that is my autonomic failure, part of that is because I knowingly take risks which can and have resulted in permanent injury (though not massive stroke yet, whew!).

I cannot have a disease and then ignore it, and decide ‘I will do everything exactly how I want!’ – or I can, if I want to be in the hospital or die. It might seem like that but I don't actually do that. What I do is make all the preparations possible to avoid a negative outcome, I plan with the help of medically trained individuals to avoid problems and then decide what accepted level of negative outcome might occur. I do not recommend that people who live with long term chronic conditions be giant risk takers if permanent injury is involved (now if the risk is pain, and something new and maybe that things don’t go perfectly – well, I advocate evaluating and trying the things that are worth that risk).

An overwhelming majority of the TIA’s, seizures, strokes and other incidents have to do with that I have vascular autonomic failure. I just try not to live as if having autonomic failure means I have to go inside a sterile box every minute of every day. Nor do I give up (or wait to be 'saved') if systems fail and I need them to survive. Giving myself CPR by hitting my chest with my right fist to try to get regular heart beat is something I’ve done, and something I would do again (though due to lack of feedback now, it is unlikely I would feel that before I pass out). You have to do what you have to do. I continue to try to maintain the best possible health in order to achieve the best possible quality of life, so I can do dangerous and interesting things. Haha.

SCI’s, wheelchair use, diseases, and chronic conditions don’t make you a different person, just the same person facing different situations. Maybe a different person will arise out of that. I hope that if I sneezed and was suddenly all better, I would NOT go back to be the same person, do the exact same things, with no awareness of disability issues. Speaking of doing what I need to do to survive, that’s why I have to go to bed. Because I need the energy to get better. And as Linda will very much attest, I am not always perky with a positive attitude.

Whimsical Preserves: rare jelly and diabetic jam, a 1933 Model T Truck, Postcards and Hawaii.

Say 'Hey!' to Tanya of Whimsical Preserves.She makes organic regular and rare jams/jelles AND organic diabetic Jams and Jellies. We have tried her and her stuff is the bomb (this means it is good, like ‘really good’). She is at our James Bay Farmer’s Market and there are six more weeks until this season is over and then it is on to fall and winter (brandied cherries, yum!).

Tanya believes in getting the fruit herself or directly from a local farmer. So for her blackberry jams she picks her own vines of blackberries, the Victoria ones, which are as big as a thumb and sweet as can be. If she has to get fruit off the island, like Peaches, she gets them from British Columbia, so they are FRESH. The only thing she can’t seem to find local are Mango’s. If you want her email, let me know, and you can email her for find out if she does a flavour/flavor or preorder some diabetic jam for Saturday. I will be happy to pick up and post the jams for you. “But Beth I have my own Farmer’s markets!” Well, yes, but they might not have: Peach, blueberry, blackberry, raspberry, strawberry and other diabetic jams to order. They also don’t have hand-picked Saskatoon Berry wine jelly. Oh yeah, and it is $5 a jam or jelly. Here are a FEW of her better (and rarer) flavors. From the top left down that is Sangria (yes, the mixed drink from south America) Jelly, Saskatoon Wine Jelly (hand-picked berries from the north by Tanya), Raspberry-Mango Jam, Kiwi Daiquiri (Kiwi, Sugar, Pineapple Juice from Concentrate, Lime Juice, Pectin and RUM!), Nectarine Ginger Jam and Lime Marmalade (Yum). Every Jam has the ingredients and the weight, and if you give the jar back you get twenty five cents of the $5 back. Most are 250 grams but the ones with rare or expensive items like the Sangria Jelly or Saskatoon Berry (first and main ingredient in both is red wine) are 125 grams.

It is hard to get good diabetic jam, organic diabetic jam in town and she is one of the only Jam makers (all the other Jam makers I ask say, “Yeah, I get asked for that all the time.....Nope, don’t have any”) who makes it and will try to make it to order if she can. All the Jams are organic and natural so refrigerate after opening please!

That is what I did on Saturday, went down to the Farmer’s Market to pick up jam. Because these are not the types of items a person can get everywhere, and there are but a few short weeks left. And as it turned out there was someone there selling Organic Buffalo, so we ended having Buffalo Burgers all weekend (very lean!). The previous week there had been a free petting zoo from the owners of the Beacon Hill Park Petting Zoo. The owner has his 1933 Model T Ford 1.5 Ton truck with all original parts that he is very proud of. There are only 20 of these left in existence, and this one was in California. Victoria is a destination and place for collectable cars, with a recent convention of Bentleys, and us seeing 1910’s British cars with running boards, or old MG race cars as just part of a normal sunny day. Everyone brings out the collector’s and vintage cars into the sun.

I was pretty ill this weekend, and have a few medical appointments this week. So a big sigh. I did a lot of research on Hawaii this last week (8-10 hours a day some days), because it turned out that getting tickets on an airline was the least of the issues. We have to find a place to stay in Honolulu and the Big Island when $250 a night is cheap, and $400 is standard. And it happens that the week we are going to the Big Island is when the Ironman Triathlon is on. On one hand, “Cool”, on the other hand, getting flights off the island and accommodation booked much less a car rented is getting difficult with 1,000+ people and families coming. This is the biggest/important global Triathlons annually, which a involves a 5 mile swim,a 125 mile bike ride and then a marathon run to finish. So many people want to do THIS race, you have to either qualify by time or enter the lottery to get a spot (of which about 1 in 5 might get one). Here is Kelly Bruno making a record on her second Ironman in what is considered one of the toughest in the world as she runs into Kona, Hawaii.

Problem with my research on Hawaii and the accommodations, flights, vehicle rentals is that I work for many hours, then give the summation of the information to Linda or Cheryl before I forget it: brain damage means when it goes out of my day or 2 day zone, sorry but I can't remember. Cheryl has written a blog post on going to Hawaii which probably has the kind of details they hide from me. Either way this weekend I was punked bad, clocking up over 12 seizures on Saturday. There were the ones Linda dealt with, the ones Cheryl dealt with, the ones I had on my own and the ‘big one’ that wiped out that last 3+ hours of the day from my memory. Seizures are not ‘the bomb’ (they bad!) and by the end of the day I was having problems breathing due to ripped rib muscles. So I rested. Meaning, I did NOT do the 48 postcards of last week including these oversized ones with classic pulp covers. Did I do none? Well, I did a FEW (16?, 18?) but I did manage to find some BIG ones, ordered online: 8 inches by 10 inches to 8.5 by 11 inches. It turns out that doing stickers on BIG postcards take longer, like an hour longer. Gee, who knew! Yes, now I send postcards as large as a poster! So yeah, I went to bed a bit later. But next week, when I can breathe without a wince, I am going for the big score – still about 220 postcards for August. Woot!

I have to go rest again now, and will get the yarn and all the other fun stuff in posts as fast as I can. The synthoid is helping me be alert, even if my body has bits dropping off, and I have different beats/blood pressure on the two sides of my body. Hey, we can’t all have the same blood pressure right? So I hope you had a great weekend. Please check out Cheryl’s post and if you want any of Whimsical Preserves, let me know and I will give you Tanya’s email or just go buy them for you.

P.S. – due to problems with my voice at the end of the day (low oxygen rasp, slurring, and saying wrong words - it is no good for Dragonspeak) and my hand, even in the forearm holders having too much pain to type, I have added wrist immobilizer/braces to the WishList that Cheryl recommends. If anyone can recommend others, please let me know. I am trying to solve the problem of Elizabeth=blog, blog=some use of hands.

Linda drags Beth to ER: Beth not well, but released anyway.

I don’t like going to emergency rooms. This is because I am an individual and most emergency rooms view people as being part of a ‘parameter’ – meaning, ‘Will they live? Then get them out of here.” Indeed, the doctor who looked at me told me that in THIS case it was acceptable I came into the ER, and could in the future, assuming I could not get to a family doctor.

The reason I went to the ER (or was taken), was because I could not stay awake, after 9 hours sleep, I quickly was fighting sleeping, before falling asleep and would not wake up. Linda woke me after over two and a half hours and several tries but at the time I could not move, or even speak to start. She tested my BP and I was 90/40 and just over half an hour later 100/53, and that was AFTER she had moved me to a seated position. Over the next hour my BP remained as low. So she packed everything up and put me in the van and we drove to ‘the other hospital’ the one which is not ‘one of Canada’s worst’ according to the doctor who works there. We waited, with me slumped face down, and my lips with a bluish tinge (according to Linda), for 30+ minutes to see the admiting person in order to be registered to wait in the waiting room. In the waiting room: People were there with babies who had fallen, or 2 year olds who had a sore shoulder. After about 2 hours, I was admitted into the ER and given a bed. The bed was fixed and unlike other facilities did not go up and down so like, people in wheelchairs can transfer over. The person taking the admitting information had told us she would be back to get our conditions and medications, but she did not. Nor at any time during the entire visit did anyone look at the medical alert bracelet. This makes the cost of taking the ambulance almost worth it as things like ‘can't sweat’ or ‘trypanophobia’ (needle phobia) or ‘oxygen therapy’ or ‘multiple system atrophy’ actually make it onto the chart. I mention that because these are the four things on my medical alert bracelet and these are the four things in which the ER personnel actively endangered my health.

I got on the bed; and a woman came to take my blood. She was an angry woman who said things like, “If she isn’t ready then I’m not taking any blood!” or “If her vein isn’t right, I’m not even trying.” She either had not heard of trypanophobia or did not want to hear about it as she said, “Fine!” in a "I'm fed up" tone and then turned around and left. The Emla was put on in the waiting room so the tech could take the blood as soon as I entered the ER, but that tech did not return for over another two hours.

I explained to the head nurse that there is a medical protocol for trypanophobia as it kills, and has killed 23 people actively (by causing cardiac arrests), many more are killed passively by lack of treatment like mothers who won't get ceasarians, or the diabetics who won't take the insulin. Those 23 were noted in just one journal article. The response was, “Yes (23 died), but out of how many?” This seemed really odd to me. My understanding of ‘Health and Safety’ is that if you do something like find out that people have Swine Flu, instead of asking, “Yes, but how many are dead?” And if the number is below 50 for your country you do nothing, you institute a protocol, like asking people if they have returned from Mexico recently (which is up at every doctor's office in the area). And if you kill someone in the ER, or kill many people because of an action, they put in protocols to stop you killing people. Except in this hospital it seems, where, as open as a profit-conscious HMO, the question isn’t if people will die, but how many will die, and "what percentage?” Well, I don’t know, but since Trypanophobia (Needle phobia) has four types and most people with it won’t go to the hospital and only the type 1 tends to die DIRECTLY from Syncope which lowers the heart rate enough to go into cardiac arrest. And when the person who tells you they HAVE Trypanophobia is coming in because they have a low pulse and a low blood pressure, that seems a life endangering response (as the most common response to trypanophobia is a dramatic drop in blood pressure and heart rate). But to answer the question, considering how few go into the hospital and how rare the condition is, and how this affects one type of four, maybe .5% annually die, maybe 5% annually die. I don't know. Is that an acceptable loss?

I will state that over at Jubilee, the other hospital we chose NOT to go to, they have always treated my trypanophobia well, and put on emla, and a patch (we had to use our own emla and patch at this hospital) and followed our protocol exactly. Not like this hospital where there were threats, offers of being held down, or people telling me to wipe off the Emla (a topical anesthetic) as they are coming over only to NOT come over for over an hour (making the deadening process useless). It was not a good experience.

For some reason, even though my fingertips are purple, and the last two fingers of one hand is black along with part of my palm, the oxygen reading on the monitor continues to show a perfect 100 percent. We find out just before we leave that to stop my Raynaud’s giving a non-reading or if someone has nail polish, or any other reason, the oxygen is set to 100% default. If it can’t pick up your oxygen, and your fingers are black, it will read 100% oxygen. This is a GREAT idea for not having to constantly check people due to alarms (my oxygen alarm was turned off anyway as in talking to a nurse I managed to animate enough blood for it to read 80%, and the alarm annoyed her so she turned it off, and then didn't turn it back on). But the whole 100% default is not a great idea if the patient needs oxygen therapy to get better. Or as the doctor said, seeing me six hours later, “Your oxygen is fine.” And then mentioned I should ‘consider’ the possibility of anxiety or other mental disorder and the power they have over our minds.

As time went by, because no one was checking my body core, and I can't feel my own temp, it turned out I was getting hotter and hotter. This started a series of seizures which excited the ER, SOMETHING DRAMATIC could be done, like ativan or an IV. However, though we had told everyone that came by or in that I could not sweat, no one took it seriously. We were to find out that when the med student looked at my chart and asked, “So when did you first get diagnosed with MS?” they thought I was ‘heat intolerant’. No! ‘No sweat' means 'NO SWEAT’ it means 'heat stoke' (except it turns out that an angry and incompetant blood tech (she went right through the vein, with a butterfly!) can make me sweat slightly in the underarms, then it stops - so absolute terror still produces a small result).

The problem was, I figured out I was hot but post seizure, I couldn’t speak, then when I could speak, I could only speak German. Even the nurses’ and Linda’s superhot hands were cool to my head but no one figured out - hmmmm, if my hands feel cold on her, how hot IS she? Superhot blood was going to my brain and was going to keep giving me seizures, plus my resting heartrate of 73 (which with MSA is hardly enough for me to stay awake) was now 92, then 96, then 101 and holding above 100 – for lying perfectly still, almost asleep. I told Linda in german I was hot. So Linda used our ER break packs to cool my head and then asked the nurses for packs, and still they didn’t get it. We decided it would be best for my health to get out of there and that no, in a heat wave going to the hospital won’t be a last resort. So, I have a resting heart rate of over 100 (my theory is that my body was trying to get rid of heat by pumping it out to the extremities and back to the core (making the core where the heat is hot as it is working hard. The heart continues pushing the blood to the surface, which due to the fact I wasn’t sweating was simply making me hotter, and my heart rate increase). Linda said that I looked WORSE now, with my red face and nose and ears than I did when I had the blue tinged lips. The doctor, when he arrived saw no problem with a resting heart rate above 100…..and then suggested thinking about mental health services for things like panic attacks and anxiety disorders as ‘the mind can have a great impact on the body’. He included a pamphlet for me on dealing with anxiety disorders and panic attacks when I left. So it turns out that your treatment AFTER you have been actually BEEN DIAGNOSED with a named disease still means you get treated like you are the problems if the doctors don't know the disease. And thus it was all in my head, instead of, "Uh oh, rare disease, lets look it up and see what the potential hazards are?" - nope a lot easier to go with 'panic attack'. Now, as to the over 100 beats a minute heart-rate: I would like to inject the ER doctor with adrenaline 24/7 for a while to test this theory: that having a heart rate while resting which is the same as what you have while running a 5K in training (as I did 5 years ago, actually about 94 for running), that having that occur all the time is probably very fatiguing. That's my theory - not, "The books say people can have it" but could YOU Dr. ER, have it and keep your job? But then, individual patients are not the vision of the ER, just, “Can it live? Have other humans lived like that?” and "is the problem immediate to be dealt with THIS minuste?" not “Is that good short or long term?" Or "can they hold a career like that?”

My BP spiked when they took the blood, and as I found out this morning as I got a nose bleed (174/143). But then, I don’t go to ER’s for nose bleeds. Or blood out of the mouth or ears. We got the blood tests back and yes, I still have anemia, the same amount that Jubilee circled and wrote, “GP deal with immediately” – turns out that while I am below the Canadian level (which is far lower than the minimum UN levels), I am not low enough for a ER transfusion, which is below 70.

However, all four of my blood oxygen carrying aspects were also below the limits and Low – low red blood cells per volume, low amount of oxygen carried by each cell, hemoglobin, hemocrit, all low. The doctor said that they weren’t DRAMATICALLY low, like I wasn’t bleeding inside, and said "look my white blood cells were within the normal range." I sort of looked at him funny and said, “Good, because if they were elevated or eliminated, that would be a major infection and that would be ANOTHER problem.” He said that my anemia and RBC and other anemia related tests below the limit was not so dramatic that I would not notice a difference from yesterday (hence not the reason I came in), and then asked me: What is it you want to know? I said, “Well, those results might not make the difference that brought me here but I AM fatigued and have been for a year, so how CAN we treat it since my iron and my B-12 are normal? Idiopathic Anemia?” He said these things were best investigated though the GP and specialists. (insert hollow laughter) So no luck there, and no long term change in the fatigue factor, or as I pointed out to him, it is best to eliminate a side issue to see clearly the main disease. He said, “A lot of your tests came back normal, which is good, since you know, normal is good and something bad isn’t good.” I told him when I come to the ER, I want something dramatically bad (I can get crappy normal at home, why go to the ER for it). When you only get 4-6 seconds of a heart monitor strip the doctor sees, you WANT something dramatic to happen on it!

After all the 'normal' and 'Good' The ER doctor failed to mention that about 35-40% of ALL the tests including those for kidney and liver were ‘failure’, or lower or higher than allowed perimeters without treatment – that I had about 15 items that ‘required treatment’ according to the standards and perimeters set by BC medical and Canadian Medical Authority.

Linda noticed and questioned about a liver and another test failure, if they were likely due to hypothyroidism (she does her reading) and he admitted that he didn’t understand why I wasn’t on synthyoid as is was cheap and an easy solution. He did not however offer synthyoid (we asked!) as these are best done by your GP (or as he added, “Or in your case, a walk in clinic.”). Strangely when offering the results to take to the clinic he adds a pamphlet on mental health and dealing with anxiety disorders covering the top of a medical readout where 30-40% of all the tests are in the ‘treatment required’ zone. So 30-40% medical test failures but.....I given pamphlet on not having panic attacks.

So, since they were not regulating my heat, or my oxygen, or my heart rate (the head nurse did note and state that it was odd that after being giving Ativan which should LOWER my heart rate, given to me during seizures, mine instead went UP). The German speaking dropped out after an hour or so. Just in time to wait a half hour, then talk to the doctor and to leave.

I find it problematic as we went to the ER, but ended up using OUR emergency supplies to keep me from having more seizures - IN an ER. And I was without body temp, oxygen or heart rate monitoring (even after multiple seizures and a change in heart rate of 30%), they were and had endangered my health. After six hours without an offer of water or anything the doctor suggests I was lethargic due to being dehydrated and wants me, at 3:00 am to stick out my tongue. I do, he hmmmmm’s and that is that.

So, believing they never really understood my disease (or even the name I think since I don’t HAVE MS), I wheeled over and asked the doctor, ‘Since my disease has two main life threatening issues due to autonomic failure: first is stopping entirely of the heart and second is stopping breathing’ When WOULD I come to ER?"

He said that is a good question, and that if I came like I came today frequently then they would know it was a mental issue, but to do it infrequently due to a change, like I had today was okay. But for a stopped heart or stopped breathing (insert his laugh) ‘we’ve dealt with far worse than that, and that is not an issue.’

Wha? What is worse that a stopped heart and lungs due to autonomic failure? No head? And they fixed that? Also, if my heart stops in my home, how can he ‘deal’ with that if I have my ER experience I had today? How, when he sees me six hours later is he going to start by heart? If he can revive people after six hours of heart failure (or no breathing) I would think that either a) he is creating zombies or b) there is many, many cities which would like someone who can revive someone to normal after they are legally dead for six hours.

He suggested that I try some ‘alternative medicine’. I asked if that meant he thought my black bile was too high and my yellow bile too low, my phlem unbalanced? He said he had other people to take care of (this was irony as watching the monitoring board, we were the last to go!) and didn’t have time to talk about this.

“No 17th century alternative medicine?”

He turned away.

Odd. It was now 3:30 am and after being told that it was all in my head, holding test results saying “This person should be treated” including some that were circled with notes beside them. I had a pamplet on anxiety disorders and Linda now had the knowledge that if I stopped breathing, she could load me up, drive me there, wait 30 minutes to be admitted into the waiting room, then another couple hours to get into the ER and he would revive me, same for my heart. Yet, she did not seem comforted.

I went home, slept, got up, blew my nose, filling the Kleenex with blood, cleaned out that nostril and started another regular day. Linda and I decided, the Jubilee was faster, better and the doctors had actually heard of my disease instead of doing the ‘I’ll try to blind you with test results you haven't heard of....’ technique – wow, the ER doctor really did not like it when even when he went, “Look your kidney is fine, only the XXX is over the limits” and Linda said, “But isn’t THAT and indicator of hypothyroidism?” Linda gets a sort of ‘you are supposed to be awed and shut up’ stare before he says, “Well yes, it can be one of the main reasons.” And suddenly that was the last result from my blood tests he wanted to talk about.

So while no hope on the anemia front, I could get synthoid once the antibody tests come back in two days. So here is hoping (I’m hoping for auto-immune diseases, how sad is that?). But as for THAT ER, I rate it a 2 out of 10. For common injuries that visably bleed, it is okay. For me and others with rare diseases, the doctors and staff do not accomodate the disease or monitor them in any way (basic medicine) - which means you are in the Emergency Room of the Hospital, monitoring and trying to get help dealing with the same issues you deal with at home, WHILE you wait for them to figure out the BIG issue that brought you in that day. That ER and staff endangered my health, did not monitor any of the three things which were the highest risk to autonomic failure and then sort of blamed me with the ‘it could be conversion, it could be anxiety, the mind has a powerful affect on the body.' Gee, and so does OXYGEN, the kind that I can’t convert properly, the kind that I have lower blood cells to carry and they carry it poorly.

Does the ER thinking I HAVE MS now mean I can actually use the MS society clinic, unlike before when I was told “Money raised for MS is for patients with diagnosed MS only.”?

Elizabeth's "Booms", Linda's discrimination and the unmentionable

I am afraid that both I and my trusty computer went “BOOM” last night (my 'boom' as least was free...that time!). My computer blue screened anytime it went on the internet which indicates new motherboard, new harddrive, both, hard to say. I on the other hand felt an aura while doing the postcards for the new requests and only made it facedown to the floor before it started, at which point things get hazy because I had several, and sprained things like my neck and wrist and at the start of one felt myself losing fecal and urinary control but I guess the gift of retention is while you take 20 minutes to pee, you don’t always pee yourself! However a final seizure series later wiped out my speech center, or that what Linda says is her ability to understand me. I now have a little French, a little Spanish, and can say some words but it makes my head buzz and my vision go dark and often I can’t remember what I said. But living IN my head doesn’t hurt, so let’s go with that for a while, okay?

First off, I have been concentrating doing such a quality job with anime pictures because a) I have been getting anime art books when I can at 75% off, and a few from Japan directly now and then for about $20-28. And b) Because most of the time I look a wee crap, you know, face ashen, hunched over, etc, and I don’t want to bring down the tone of this blog. In fact I think the pictures give added value to the blog, while me looking like some pupae fresh from cocoon with slime trails is um, less fun to look at. In fact I use more foundation now and put it on every day because I was tired of the comments from the caregivers (“Oh you look so much worse!”, “Wow, you’re so pale!”; they must have a course on how to make the client feel comforted) . But here I am, looking not too bad. Some could say I am thinner (or that my head is smaller) but I prefer to view it as that my ears are simply doing a late growth spurt. That my two ears are about half the size of my head shows what a bang up growing job they are doing.

Second I guess is to try and tell you the conflicts in my feelings about being taken care of. This means I talk about an unmentionable: money. I get a biweekly allowance and spend it on gifts usually (and artbooks!) and am helped by Cheryl and a bit by Linda for buying postcards. One person mostly pays for postage but a few others have been helping out in that lately. I bring that up because the finances of dying or rather having a prolonged and severe illness cannot be escaped by the one who is ill. Whether that is the Gatorade I have to drink ($1.25 a bottle on sale, 2-3 bottles a day), to the medications I take. And right now, because my current GP won’t move me into harder opiates I have to take 3-4 different painkillers, as will as 2-3 seizure meds, as well as pills for my immune system, for strokes, for my heart and others. Linda doesn’t tell me the cost but I know that just 1 pill I take 3 times daily cost Linda $1 per pill. I have recently had to increase most of the pain, seizure and heart pills by a factor of 2 or 3. When I see the minute pauses Linda has about choosing food, or the other signs of financial worry, it is hard NOT to want to delay in having pills. Who wants to go, “Oh well, you’ll just have to figure out how to pay this off when I’m dead – pass those high price pills!”

This, along with the absurd costs of everything disability related is why I am often overcome with the feeling of being an unbearable burden. So I frequently skip or refuse my pills. However, as within 24 hours I am usually screaming and being held down by a couple people or in a depressed heart and seizure cycle that leads to the hospital ($86 for the ambulance ride), in the end I take the pills. Until I forget I’ve done this “problem solved solution” before and try again.

Because as I grow weaker, as more systems fail, I become more and more dependant on others, which is Linda, a little bit on home care and those she hires. Normally family would help out, however, my parents, after I talked with them over the phone and counselled them on how to ask their GP for tests and what medication to use now have a new lease on life; a dramatic life improvement. My mother finally agreed after I was exceedingly blunt to try the pill created for Fibro and now has a great quality of life; which she told me in a card with a $25 check (so I do phone consultations, for um, $25 I guess!). My father has heat related palsy and is more stubborn but has some better quality of life and has decided after reading carefully about the postcard project, that as an ex-minister, this is the sort of project of giving he supports, or so he told me in a letter which had $10 in it.

Why my parents mail me letters once a month or so when they live within sight of me, I cannot say. My father indicated that this $10 was half of his entire allowance (at which point I wrote to tell him that it is not 1970 and a grown man of 2007 can have more than $20 a week, and I returned the $10 – well if anyone told me they ONLY had $8 after their assistance check/cheque and were sending me $4 I would thank them but return it because $4 is not a large cushion of savings for someone with a disability – I pointed out to my father that these principles were taught to me by HIM, so sorry, and thank you for your concern but no thanks.)

I am sorry if that seemed to go nowhere but it does have a point. I have spent my life solving problems by getting jobs or overcoming adversity and at one point worked five jobs; I worked a full time job, then worked another 39 hours from Friday at 5 pm until 4 am on Monday and then worked the full time job as well as two night jobs. Now it seems due to government agreements that the contributions I made will help others not me. That I have indeed worked year round for over 20 years (I was one of the first to work at the ‘unage wage law’ of California), and have not yet been able to claim anything from unemployment to disability. But that was okay, because I had the degrees now and could get a university job, even if only research and have those benefits. Except that didn’t quite happen. And for a while I applied for jobs and worked in trade while in my wheelchair, but none of the jobs I did or things I wrote, including BBC ended up being paid. Nor really was I seeking that at the time (It would have been NICE!), I was trying to find a paying job in town but now that is far, far beyond me. Indeed so far beyond me, at times I wonder if people aren’t thinking when I say I am disabled, “Hey, I’m disabled, I have impairments, but YOU, like dude, whatever you are is SO FAR below me, that I wouldn’t call it Disabled; breathing maybe, but not disabled.”

Yes, so is someone who needs care for a majority of the day disabled? And when the main aspect of their care is to keep them alive, or minimize the damage to their body?

The other thing I have found with long term (or for those who consider 8 years or 10 years or more long-term; short to medium term care) care is that there is guilt and there is fear. I have guilt because I am watching Linda become tired, trying to work two jobs; one to keep insurance and progress her career, one as caregiver. I have guilt because the joys we had as Able bodied or even when I was a bit healthier are gone, which leaves Linda with the bulk of trying to go out, or do something together, or more often just sleeping or taking a hard needed rest of her own. I would change that, but I can’t. And as I change, more and more mentally and physically, my ability to do anything to assist her is curtailed. That is guilt.

The fear is knowing that while I am the person making her exhausted she is ONLY thing which is keeping me from NOT having the medication, to having to be tied to my bed in restraints while I scream and scream in pain. They don’t have a place for me at the hospital. I would be placed in the only space available, either a facility for the indigent, the homeless, a mental facility or a seniors home. All would probably try to refuse me due to the level of medical treatment needed many times a day. The hospital would refuse me because their job is to stabilize people to get them OUT – to places elsewhere. So wherever I ended up, I would not be wanted, I would received a minimum of care and it would be an incredibly wretched existence which would dramatically shorten my life span, and I would be SO thankful of that. I want to believe it is still last year or the year before, that we have options, that we have stability, and I will be okay, but as I get worse, and worse and Beacon steps back going, “We don’t do medical” that fear grows.

The reason I talk about this is that we were going through a very bad financial patch for a while, which I don’t think I blogged about. I don’t remember what started it, probably some medical cost but I don’t know why because a) it is WAY outside my time frame to remember, no matter how emotional and b) because my recent round of seizures and perhaps a small brain bleed have made that impossible today and probably forever (Oh, when you can taste the blood in your mouth between seizures, that coppery taste in your nose and your tongue and the back of your throat and then you feel it starting again, it is like being alone at the bottom of a mine shaft, you know there is light up there, but are you ever going to see it?). Anyway, that period of crisis ended with a NEW crisis over two weeks which took several hours a day and several trips to the US because Bank of America made a mistake and then they made it several more times turning my account of $68 into -$335, not just once, but after working with them for several hours a day for a solid week, they did it all over again. And this is due to a ‘hidden’ $25 overdraft which IF USED, though you don’t know it exists, charges you with $35 for each use, and if you are like me, buying $6 and $8, and $13.99 online – well, even before you get to No Funds, there are some pretty huge charges. Plus it turns out that in Washington State when Bank of America took over SeaFirst, they never were able to integrate the two computer systems, which means, when you talk to the manager of a bank, or of the district says, “No worries, there are no charges coming in” that you can be hit that night with an NSF fee that has been on the OTHER computer system and lingered since last week but just now decided to hit your account (by the way, withdraws are done BEFORE deposits to ensure maximum fees). So I spent two entire days and many seizures trying to remove this “hidden” $25 overdraft that I had not asked for.

After many arguments with supervisors I ended up with the manager of the ENTIRE Bank of America Service Department at their center and we talk and talk about how the ‘system’ is supposed to be there for the people not the reverse and she goes, “Yes, this is getting ridiculous, let me just take that overdraft off.” A few minutes later she says in this voice of wonder, “I can’t, I, it is saying that I DON’T have enough authority?” She said that the Bank Manager would. Well, more trips on the ferry, more seizures, talking to the bank manager as it happened all again a few days later. And Linda had to keep changing money from US to Canadian and back again (which is a good way to make a large pile of money grow small as the bank takes 7% or so each direction). After 2.5 hours I got what she did not, a complete reimbursement of over $300……AND the email address of the guy who would like to “continue this great conversation some more!” (There are times to ‘come out and be proud!” and this wasn’t the time) It turns out no one in Bank of America can remove the $25 hidden overdraft, it is implanted in the computer code by Visa. (Visa not Vista – one is an evil empire, the other an evil operating system)

Soon after or during this Linda was first diagnosed with a disability/impairment, and had that confirmed by her doctor, who will be meeting with her ever few weeks to work on solving it. Meanwhile, I was broken from my “all is okay” bubble because I did not have an allowance the last period, nor all of the previous. Which is totally fair, but something Linda wanted to avoid me knowing because when I worry about money I do things (like call Bank of America for 7 straight hours), then I have seizures, and seizures, and depressed heat beats and breathing and then I try and do the same thing the next day. And she doesn’t like cleaning up the mess, besides seeing me in that kind of pain.

The money from the book faire, which I help price and select was a couple hundred and was to be a back up pot for postage and my time problems which CAN cause money problems (Linda explained that if I have $40 to spend in a week and I spend that, and then I have seizures or forget as it passes the two or three days that though I don’t remember spending it, that doesn’t make it ‘a new week’ even thought I THINK it is, so when I spend $40 over the NEXT few days=problem – this it seems has happened – we are working on how to fix it without making me terrified about money all the time). But because of the last month we used the money instead for groceries, and medicine. I can’t really talk about Linda’s health and disability because her employers, who were discriminating against me through her are now just going after her (and read here to find stuff to use against her). And though they require you to get an ST02 form (which you have to pay $25 to be filled out from the doctor as it is three pages long instead of the notepad sick note) to get short term disability, they have required her to get that for a single day’s absence. Also, on the form, only the occupational nurse at the Public Sector Agency will know what is on the second form, which states the actual disability and medical issues (you are NOT required to tell that medical information to your supervisors or others due to medical confidentiality, the form simply informs them what accommodation needs to be made – in this case, half days for Linda). However, though the other half of the day is covered by STIIP, it only covers a portion (50-75%). Linda had given the note and it been accepted and thus acted upon, she was already working half days.

On Friday, Linda’s supervisor and the head of the government section approved a statement that Linda’ supervisor, though he/she did not have the medical details (as those are only available to Linda’s Doctor and PSA’s Occupational Nurse) did not feel that she had provided sufficient information and was retroactively withdrawing her STIIP benefits and pay (including the half days she/he had already accepted). Moreover, she/he stated that they had made the decision Linda does NOT have a disability and that Linda WILL show up for full time work Monday and here on or face consequences (By the way, Linda is a government MANAGER, not like, a store clerk or anything). It is winter for Linda right now, weather, health and workplace. This not only counteracts the doctors’ direct instructions for Linda’s Health, the same doctor who wrote up the ST02 but also PSA who holds the notes and medical information. They have basically told a person in a wheelchair, “I think you are lying, so if you don’t walk up those stairs, you will be disciplined or fired.”

Friday was payday, which meant we made it out of the darkness. Well, except with her supervisor retroactively stripping her pay, and our computer dying we weren’t seeing lots of light. This is not a good time. While Linda gave me the choice to return to a ‘safe space’ after the bank of America issues, how can I literally lie there, knowing she is currently disabled and being persecuted? Except I have to, because I don’t have any options, but as least I can be here to support her emotionally. But, like so many others dependant, I look to my present and my future and I sometimes get terrified. They are of course, threatening her job because without the insurance, there is no way we could afford a week much less months of the cost of well….Me (or the costs of modern medicine). And there are no other current options in Victoria.

So that is where things are today. Because I have stamps I have been sent and postcards, I am doing postcards tonight. Because while things seem helpless financially, and I am helpless physically, I can still do things and try to make a difference. Plus Linda made me promise not to kill her supervisor. That doesn’t stop the guilt and emotional pain I feel, every time I am handed my BOWL of pills, looking down into what may be keeping me going, but at what cost to Linda? All the money for Seattle, and the concentrator that was donated, I asked Linda to return when I believed I was going to die like within a few days.

However, I am not dead. And Linda says the money for Seattle is still there, and when we get the final signature and some tests done, we are off. But right now, we have enough to get to Booth-Gardner, to get into see the doctors, and to have about 30 minutes of tests. I am on the waitlist for a brain MRI and a 40 minute EEG next week, if we take those down with us, the HARD data for them to look at, that saves us about $5,000 – tests which Blue Cross has specifically told us, “We WON’T cover you.”

I am sorry that I am talking about money which you are only supposed to talk about when you are making it or have a lot of it. Yeah, I know that I only remember one food, so I think we have been eating the same rice for a while. But Linda is still trying to be as chipper as she can, only our entertainment unit (Which was watching anime or DVD’s on our computer has now gone Kerplunk!”) is down and after that is paid for, I think I will see a lot more rice for a while. I write about this because if you have a long term disability, a severe one, money is an issue. And while Triumph might authorize things like $5000 for a wheelchair, or the Lion’s Club raises money for a racing chair, they don’t raise the money for the race entry fee, or the food to eat, or the drinks you need, or the medicine. And maybe that is why so many couples split up. I hope Linda gets better, and gets treatment, she seems to be getting it. In fact, my crap treatment and subsequent investigation into the neurologist resulted in my father getting royal treatment and immediate MRI’s from the same Neurologist the week after my complaint (odd that!). So, I hope I am by raising a ruckus providing better health care for many people!

Right now I am a wee pissed and frustrated. And yes, pissed not just at the actions of Linda’s employers of simply decreeing “You are NOT disabled, and if you act that way or expect us to follow this Doctor’s instruction, you will be disciplined and lose pay!” And yes, I expect that will play well in a human right court in a few years time, but doesn’t do much for the gas/petrol to get me to the EEG. This is about my parents. I have worried over my parents for years, decades because they had a knack for buying shares of companies about to go bankrupt, and had mortgages which were refinanced. I expected to pay of the rest of my student loans and then pay off my parents condo. However, an inheritance allowed them to move from the condo into a new $500,000 condo (split level; wheelchair inaccessible). And I was happy because I didn’t have to worry anymore. But then, due to various issue they have, I literally have had less contact with them in this last year than I have when I was in Wales (and less visits). And their view is that I got sick on my own, I will have to get better on my own. After all, they took care of their mother, they did ‘their bit.’ Well, I agree they did their bit. Of course, the selling of the mother’s contents to an auction house within 30 minutes of her death was a bit…um…different than I would have done things but okay. My parents took I believe 11 vacations last year. They have just gotten back from 11 days in Arizona, and are going on a Cruise to Hawaii later this year they say, but before that they will be going on another weeks’ vacation, and before Arizona was a week somewhere else that is beyond my memory.

Linda’s mother, who is the wife of a small beef rancher who I believe has had to declare bankruptcy, or the like, after a lifetime of farming (could be wrong), he is in his late 60’s and may still be working in livestock auctions where he has had MANY broken bones (he brings in the bulls, etc to the auction), she has offered to fly out and help take care of me. This is the same woman who would not actually look for more than a second if she could help it the last time we met (some years ago) and still won’t tell people who her daughter is with. Linda’s mother was just in the hospital with heart problems and after two weeks off after a procedure/operation has returned to the care giving work (she is approaching 60 or just past) which keeps her family afloat. She has offered to fly out, putting her family in debt, to take care of me, who she is socially still ashamed of. Like me or hate me, I am family.

My family, half a mile away WILL be floating off on their $3000 round trip cruise. I hope my father who gave me “half” of his funds will use that $10 I gave him back wisely. It is difficult in times like this, not to make comparisons. Particularly as my parents did not keep thanksgiving with us this year, though they did last year ($5.99 special at a Diner). There is no Xmas or Hanukah for Linda and I from them (though there IS for my brother?) and for my parents, though they KNEW there was a great possibility that this was my last birthday, had SOLD my birthday. See, those pictures of me in the graveyard with Cheryl and Maggie and Linda in the video on an earlier post was my birthday because my parents had sold that day, it didn’t exist to them.

When we went to Japan, they gave me a small gift of money to spend in Japan. Well, for them, that meant, they had given money with no obligation, which is well, impossible. So inside they simply wrote, “This is in Lieu of your Birthday” – which I thought was a joke. But no, to them, I have no birthday, not that they gave me anything for the first 30+ years anyway (I am trying to remember the logic which I think was that since Herod’s daughter got the head of John for a birthday present they were evil).

I could forgive them for treating me this way, but not for treating Linda this way. When Linda’s mother will fly out at great cost, but my parents won’t learn how to turn on my oxygen after 18 months just so that it is not safe to be with them, or if somehow I am they wouldn’t have to, you know, CARE for me. I don’t want to be a burden (My father said that often: “Don’t be a burden”). I have never wanted to be a burden on anyone. But I AM a burden on Linda, and I see the effects it has on her. I AM a burden on Cheryl, and it has effects on her too. And Linda’s family is willing to accept a burden of taking care of me. My own parents, or sibling, or relatives, are not. They are Christian so I guess I Tim 5:8 is where they stand (which is kind of insulting to non-Christians but I guess Christians can be at times).

Anyway, that is where things are, and that is why I haven’t been getting as much done, because I spent 5-8 hours a day trying to help Linda with her, um work issues and then a couple hours having health issues (due to the helping and emotional toil) and when I am awake only 12 hours a day, well that sort of does it. I know that Linda wants to give you a blog to update people on the medical stuff, which I am not really privy too.

I simply can not lie by, though I may have to, while people hurt Linda or while books can be sorted and priced, so I am willing to bear the costs I can, which are physical (Seizures, blood, blah, blah, blah). It sucks, but then, it probably reflects how a lot of people have life and decisions that suck when it comes to long term care. Which makes this post and topic a disability issue.

The good news is that with our giant clunky oxygen concentrator on so much we don’t need to pay for the clothes to dry, we just hang them around the concentrator (I’m serious, it saves us like $5 a week!). We don’t have to pay for heat either, but Linda tells me that is free so our clunky steam-punk concentrator isn’t helping us there, darn. Hang on for another day or TWO (computer not coming back today, is sick bad). I hope that my computer will return to me soon and I will be back to at least that stability in life.

The new joy of my death benefits (Cha-CHING!!)

Dear everyone, I am sorry I am not able to blog today (but what is this you are reading?). I am working to send out postcards and packages for tomorrow. So I give you this instead, my current most prized piece of stationary which is unique (I don’t know any one else who has one). I told you I liked girls with wings. hee hee, is that me?

I had a grand mal in public today which is a first for me, of sorts, maybe (the whole memory thing makes me doubt what I say). But I got out of the wheelchair in time and just hurt my shoulder a bit. Basically, I can spend two hours today doing a kick ass blog, or I can send out 20 postcards in that time. This time I am going all out on the postcards so if you are in this batch, well, lucky you!

I will recount a story from this week, Thursday I think. Linda called to tell me that in an attempt to retain the employees that my blue cross coverage was raised from $100,000 lifetime limit (which I am almost hitting in less than two years!) to $250,000. However, that wasn’t what Linda was happy about. They decided to UP the life insurance policy on spouses by $25,000 or $50,000 from the existing amount WITHOUT a medical. So I qualify and Linda had already signed me up and everything (I guess in case I died between the meeting and her telling me.) I was, “That’s great! That’s super! Wow, okay, you are going to be able to pay off the debts and be okay, once I die.” Pause. “I just need to die…….”

I said to Linda, “Actually, I’m feeling somewhat conflicted here.”

She said that she could continue to pay the minimal premium of like $20 and get $50-75,000 when I die. And I was saying, “Well, you know, I mean, with all the vascular degeneration, even if they find a holding curing, I mean, they tell old people, ‘what can you expect after so much use’, so I am pretty sure I have shortened my life span.”

She is like, “Yeah, I think so too!”

Me: “So, even IF somehow they cured me, assuming they would treat me, then I doubt I could last another 6-10 years. So that’s pretty good. Like a down payment on a condo,…..” Pause, “No, I’m still having some conflict, look I KNOW that I have done at least 10 to 20 years of road work on my body in the last 15 months but, um, being happy about that. Um, great, I kind of need to go and hug a teddy bear right now. But good news….Sorta, as soon as I die…..”

See, I am trying to be a supportive spouse, it is just sometimes the “good news” is not always goods news. Particularly when she said they were redefining what “limb loss meant” as in you didn’t actually have to have it chopped off but could just lose use of it permanently. And us going, “Sweet, Cha-CHING! In a year or so with my body, we are going to CASH IN!” Seemed a little morbid funny but also not funny. Oh well. Back to work, more postcards. More packages!

Thanks for hanging in – big thoughtful post from me tomorrow! And replies to comments!

The Neurologist: in brief

The brief news is that the neurologist, like the many, many specials before him, is dumping me after two visits. I will be brief and bullet point the meeting and the exchanges were often too surreal to believe.

*He wants me to stop all use of diazepam as ordered by the hospital (3 to 4 pills daily). The hospital ordered it to increase the efficacy of my anti-seizure drug, Lyrica due to the double blind study (as well as many others) as published in the Archives of Neurology 2002 and others which show that it helps people have longer periods of times between seizures and less seizure. His quote is, “That is their opinion, but I have mine.”

*He wants me to NOT use Ativan DURING a seizure series, despite that it was a) prescribed by the hospital and b) According to Anticonvulsant therapy for status epilepticus in 2005, it was found in a survey of 11 studies of over 2000 patients to be the most effective for treating severe seizures (tonic-clonic) and severe seizure series. (the second most effective: diazepam)

*The reason for both of these is that they are “addictive.” Seizures apparently are not.

*He believes based on what he has heard that I have pseudo-seizures.

*When I asked him why, when the US epilepsy society has 500 “common” seizures and 2000 rare seizures he has, without tests concluded I have a type of seizure that is lifelong and does not respond to treatment? And how many patients does he tell, on their first visit, without tests, that they have ‘pseudo-seizures?'

*He did not answer either question (though I asked them several times), he is not initiating treatment. He has however had a long talk with my GP about “the type of person I am” (My GP believes because I had a complex partial in his office instead of a “Grand Mal” that I had a ‘pseudo-seizure’).

*He said he believes that it is unlikely that someone my age would develop epilepsy. I said the epilepsy Society of Canada said 40% of people develop seizure disorder in adulthood due to things like PARTIAL STROKES (hand raised) or vascular degeneration in the brain (hand raised).

*He then tested my legs, and found that my ankles had no deep tendon reflexes and one knee is very diminished, one partially diminished deep tendon reflexes. This took 10-15 minutes. I asked him WHY he did that. He said he wasn’t a movement specialist neurologist and just dealt with seizures. (????? We think he was checking to see if I was lying).

*He emphasized again the addictive nature of diazepam and Ativan using the exact same phrases as my GP.

*He said he would take an MRI and by looking at it would determine if I have epilepsy or pseudo-seizures (he is looking for deep scarring, which is what happens during Grand Mals over years, but may not show up over the few months I have had them; much as MS spinal demyelinization doesn’t show up for 6 to 9 months – or even 2 years).

*I asked him how I was to improve my quality of life, which is pretty poor in the four months while I wait for the MRI he wants. He had no comment.

*He also believes that I have pseudo-seizures due to the description of my absence seizures.

However, as we pointed out, I had TIA’s regularly BEFORE having a partial stroke and then later seizures. I still have TIA’s. I also have muscle seizures due to muscle and nerve death due to my disease. My disease also has a component of Parkinson’s (is related to), which causes instances of Parkinson’s Fog. We admitted we did not know which were seizures and which were “Fog” and hoped he would help us.

*Only if he sees what he wants on the MRI will he initiate any treatment at all.

In summary, we are now going to write a letter to have Cool Aide replace our GP since we have heard our GP’s sentences coming out of three specialist’s mouths. He has delayed referral to a pain specialist for months until I came so he could tell me his opinion of me. He has not initiated treatment for ANY of the illnesses found by tests, nor will he even do follow up tests for existing illnesses (like progressive anemia). He has not in the 9 months or so, initiated a single medical treatment, or independent referral and though asked for I currently do not have: a motor neurologist, an endocrinologist, and a respirologist (sic) for starters, even though he has signed a note saying I need a continuous oxygen concentrator.

Then we will have to start entirely from scratch. Only now, I am currently too exhausted and have been since June to make it to GP appointments and Linda as medical power of attorney goes in my stead.

“Pseudo-Seizures” are a point of debate because every year, more actually named seizures are found and taken off the list of the “Pseudo” – it just means that when the seizure is occurring it is not showing on the EEG machine. Or showing a typical seizure activity. However many specialists feel that it is just another form of seizure that is deep in the brain and thus cannot be read by current instruments. However they feel, people with “Pseudo-Seizures” have a pretty bleak future as there is no medication which treats them, most people with epilepsy are accused of having 30% of their seizures fall into this bracket; so no way to stop them, no treatment and you get a “Pseudo” label to boot. It is however easy for a lazy neurology to instead of investigating the various types of seizures a patient has or even asking, to simply label, as this one did it into two group: Epilepsy (2500 types), Epilepsy with Pseudo and/or Pseudo. Since Pseudo is “not my inch” for seizure specialists, that means they get turfed and after their one visit (or maybe a follow up, it is “good luck” and goodbye.

Cheryl has pointed out that not using Ativan at home only means that I will be more likely to have longer and more violent cycles of seizures at which point the EMTS will take me to the hospital at which point I will be given a main line of Ativan. They will also give me a limited prescription and advise me to take them during an “aura” (what you get before a seizure – for me, smell of burning rubber, blue sparkles or “something is wrong”). So a diminished quality of life, and more time in recovery from the hospital (and $86 for ambulance).

The question is, do I believe the ER neurologist who SAW me have a seizure, and who I asked if it was a Pseudo and said NO? Do I believe the EMT and ER senior doctor who saw me have a series of three to four seizures and who I asked directly what it was, and was it “Pseudo” and he said “No, it was Atypical” (meaning a seizure that is not a simple tonic-clonic and recommended Lyrica instead of the traditional drug until the exact seizure was found, along with Ativan and the Diazepam.)? Do I believe Cheryl who has seen several hundred or thousands of people with seizures in her decade plus of EMT work? Do I believe the progression of my disease which indicates that seizures at this point due to several reason (I can discuss them later)?

Or do I believe a man who has NOT seen me in a seizure, who did not ask me more than two questions but did have a long talk with my GP about “what type of person I am” and tested my knees and feet?

The following is the description Cheryl wrote up for the Seizure Neurological specialist, those who have some experience may find it of interest. As for me, I am seeing my quality of life, which is pretty poor due to reduced memory among other issues, going down for the near and far future. At no point did the Neurologist take any of my diseases into consideration. Thank you all for your best wishes. But right now I am three for three.

**

My name is Cheryl Gilson. I have witnessed Elizabeth McClung having seizures on numerous occasions. I have over 10 years experience in Emergency Medical Services as an EMT and First Responder. I also grew up with cousins who are epileptic. I am familiar with seizure disorders and a number of types of seizures.

Elizabeth and Linda asked me to provide this document because I have witnessed so many of Elizabeth’s seizures. I see her nearly every weekend so I have seen numerous seizures. I am just going to describe the seizures I have witnessed in general, as well as two specific recent episodes. I hope this report provides you with needed information.

The majority of the seizures I have witnessed are absence seizures. Elizabeth will suddenly stop speaking or reacting to her environment. It is as if someone has hit a pause button. She stares blankly and her mouth often either opens and closes rhythmically or she chews at her lip. When she becomes aware again, she is unaware of having had a seizure.

I have witnessed partial seizures where there is clonic-tonic movement of one limb (usually the right arm or right leg) in association with an altered level of consciousness.

I have witnessed what would seem to be a tonic seizure where the muscles become rigid, the back is arched, I hear a stridor breathing pattern and sometimes Elizabeth screams.

I am going to describe two recent episodes I witnessed.

Two weeks ago while staying the weekend at my residence Elizabeth had a series of seizures when she first went to bed. The series began with an absence seizure where Elizabeth simply stared and did not respond when touched or spoken to. That state lasted approximately 30 seconds. Then her eyes closed and she moved into a tonic state. Her muscles contracted and she was arched off the bed. When I touched her, the muscles were rigid. That state also lasted approximately 30 seconds. Elizabeth was completely unresponsive during this period and during the following period. After the tonic state Elizabeth’s muscles all relaxed and then she began convulsing. Her muscles were rapidly constricting and relaxing causing the jerking associated with clonic-tonic or grand mal seizures. This lasted close to two minutes. After the convulsions stopped Elizabeth was unresponsive for a number of minutes. Then she became responsive although she spoke of being extremely tired and wanting to sleep so we let her sleep. It appeared to be a post tictal state.

This past weekend I stayed with Elizabeth and her partner Linda. While speaking to Elizabeth she lost consciousness. She came around a few minutes later and it appeared that she had experienced a TIA. (She has had TIAs before and I believe the Emergency Room Physician at Jubilee also diagnosed a mild stroke at one point.)

Elizabeth asked what had happened and as I was explaining she said “I feel funny” and then went into a tonic state with her muscles rigid and her back arched. Her partner and I moved her to a prone position at which point she began convulsing. The tonic-clonic state (or grand mal) lasted approximately 2 minutes. Once the convulsions ended, Elizabeth slowly became responsive to us again but was very tired.

In the case of all the worst seizures I have witnessed (Grand Mal or complex partial seizures) Elizabeth usually has an aura. There seem to be three different types of aura’s as articulated by Elizabeth. She has spoken of smelling/tasting burning rubber/plastic. She has spoken of seeing blue sparkles. She often just starts saying “Something is happening. Something is wrong. I feel funny”. The last one I attribute to her having a sense of foreboding.

I am of course, not a neurologist but what I have witnessed is the same as the seizures I have dealt with as an EMT. They seem to primarily be triggered by overheating and being extremely tired. It appears that on days where her body has been under the most stress she experiences the most seizures.

The Lesbian sleepover, a specialist, collecting things, and local politics

I decided in confidence today to tell Cheryl, exactly WHAT fantasy with the Feeldoe I was having during my “almost” masturbation I blogged. She told me she already knew. This was a jolt but not an uncommon feeling fir a person who gets a brain wipe seizure often, so I asked if I told her yesterday. No, she said, I posted it publicly under the comments section.

What? But surely not the position and everything? Oh yeah! Yeah, note to self, do not do all your replies while high on pain meds!

Cheryl has been good to have around and I do feel that she keeps me in check as I can hardly be taking her to task for doing too much that will hurt her back as I do stupid things myself. Well that’s the theory except I apparently had a hard fall (like “Timber!!!!”), and a TIA, and some seizures followed by the BIG Grand Mal. But we still watched Anime (Luckly Star!), and some British TV (QI with Stephen Fry) and did postcards. And she said that she now “gets” disability time better. And I think she is understanding my limits better and maybe she can help me with ways to focus on my goals more and be less danger to myself (the general public will have to look out for themselves).

Anyway, the Great Lesbian Sleepover has come to an end, and yes, it looked much like this. Why are we so flushed and strategically clothes awry? Because lesbians sleepover have...um....pillow fights and Fun Factory? Actually there were pillows involved in many ways, and machines that made steam punk noises and hummed.

Tomorrow I have an appointment with a new Neurologist, who after the LAST two specialists did….nothing, is our GP’s last hope that this one will do something to treat me as he can’t/won’t. My GP does seem to have a self destructive streak as he informed the neurologist (who is a specialist on seizures), that according to his knowledge (which is limited to only accepting two seizures: Grand mal and petit mal and seems accurate for 1920’s style seizure treatment), I am having pseudo seizures. This is my view of the specialist visit. Really, when do Canadian specialist want to listen to you? Or even your symptoms? The last two didn’t.

I, Cheryl, the neurologist at the hospital, another hospital doctor and I can’t remember who else thinks I have Tonic-clonic, Partials and absance and complex temporal lobe and some front lobe seizures. All I know is that if I can wake up with: my wrist sprained so it has to be wrapped, my shoulder dislocated, muscles ripped from my SPINE, and my ribs, my leg ripped in quads and calf, and half of my neck swollen from ripped muscles: Hey, I may like a good show as much as the next person, but I think I would remember that. I remember when I pulled ONE muscle in fencing in my back. I can’t imagine putting myself in state of waking over and over with screams, and two more seizures, in the night, being unable to get out of bed and in so much pain I have to take pain pills just to transfer to my wheelchair for ATTENTION? For “deep psychological issues.” Besides the Grand Mal, I hope they do not take me off Lyrica which has decreased my seizures, it hasn’t decreased my stupidity in pushing my limits.

The count of postcards for US and Canadian posting today in a 36 hour period was: 72, from stage 1 of matching people to stamping, stickering, writing, all of it! 72, a new record, only due to the help from Linda and Cheryl and a sort of Quilting Bee Type marathon. So that’s at least 25% of the list done! Linda asked after Cheryl headed back to the US in a trembling voice, “We get next week off right?”

Oh, well, maybe the week after, I mean, got to break 100 in two weeks right?

Okay, Serious part. I am now realizing that I am losing my identity not just because I have been disabled long enough to see myself that way. But also, because of the memory problems, I can’t remember much of what happened even recently. But also, my capacity to DO what I used to do, to have the knowledge of tens of thousands of books on the tip of my tongue is diminishing. But a bit like a volcano, even when they aren’t erupting, they are still darn impressive (meaning, I am not about to sign up for “sing along time”).

The couple who came to see me were there to see Linda as one works with her. They were a fine couple, and we COULD have got on great, except they talked to me like I was 13 or 14. That while I might be doing something, or have some interests, they weren’t “adult” interests. I tried to speak to the person who just got their degree as one graduate student to another, he replied back as a person who has “been to university” to a person who has not – except he only just got his BA. So, no, he was not seeing me as the person who very likely, if things were different would have TAUGHT HIS CLASS.

She, besides flinching every time I said “lesbian” talked to me as if I did not understand basic history or geography, or that what I did was a “nice hobby.” And I guess in a way it is. I have to wonder though, is that how people talked to Mother Teresa, “Oh, that’s nice, so you do something to keep yourself busy during the day, that’s good….!” Smary smile, “Keeping busy is important!” I don’t think so. But maybe they did. People place to much expectation on what they see (like Kiki here) or on what they heard (disabled person with stroke and brain problems). Listen to me, where I am! No, I don’t hold the fate of children in my hands, but I do the Postcard Project for the same reasons. They asked Mother Teresa why she WASTED her time and energy on babies that were going to die anyway, and she said it was because they would leave this world knowing they were loved.

In an accidental encounter tonight, I met with the running council member and the president of my local community and we talked about disability issues and he wants me to give him a point sheet of the most important issues and he is going to get them addressed. He WANTS to have green and accessible housing. Linda goes, “Oh no, Elizabeth has entered politics!” Well, no, I just pointed out that having a population of over 20% seniors and then grocery stores without a single blue badge parking spot seems a bit…um…cruel. So I am about to be a warrior once more, it seems. I have been toying with the idea of going back to boxing, but until then, I guess I will delve into community politics (stop cheering Lene). I mean, he seriously said, “I don’t know the transit issues” (like buses denying or treating poorly the disabled) and continued, “I really NEED you to tell me.” Well…okay.

By the way, the sheets like this one, I have been displaying are called Bisen, they are sort of artist groups that aren’t yet professional or before they become professional anime artists who make select stationary. It isn’t that expensive, a few dollars a sheet, but very hard to find, I happened to find a woman who collected a lot and she introduced me. So I am introducing you. The Canadian Printer I took them too admitted they couldn’t match the color of the stationary master sheet, much less of the reproduction. They said that Japan is VERY good in paper and printing. Cheryl said that the paper mill in Port Angeles….is owned by the Japanese and makes paper for Japan.

In finishing, on things that make me happy, I found and had shipped this fan from Japan showing a scene from the Ghibli Film Totoro (by the way the UK copies with the very accurate and un-americanized subtitles, are currently on sale at www.amazon.co.uk for 7.95 in UK, 6.67 for export shipping, and they promise delivery or refund). This is from when the movie was originally released and the person who sold it didn’t have any more, so I have yet another item, much like my 17th or 19th century first editions, that I love, but yet can’t do much more than look at. Am I the only other one who collects things like this, where you collect it, you love it, but you can’t touch it because it might break or lose value (In Lucky Star the girl advises getting three copies of all collector items: 1 to store in a special case and put away, 1 to take out and look at occasionally and 1 as a back up in case anything happens to the one that is looked at occasionally. Both Cheryl and I were nodding our head, Linda was looking at us like we had TWO heads and were aliens).

I hope you had a better weekend than I did, and there is a fair chance that if you are a reader, a postcard might be coming to you. At least this or next week.

I finish with this picture because the end of the weekend is both the end of the day, the end of one work period but also the beginning of the war between disability time and AB time. It is when all the AB agencies and people steal my time by trying to get me to do things on their schedule, which isn’t possible, so time is wasted on both sides and then they book ANOTHER meeting. Sigh. It takes me 20+ minutes to get my wheelchair ready to go out the door. How long does it take you to walk out the door? That is the difference between disability and AB time.

Thank you for the support during my down days. And for staying for Real Life, which I wish wasn’t my life. As my strange and alienating brother once said to me after he moved into “Millionaire Row” in Atlanta: I explained that all people have problems and struggle in their own ways, and he said, “No, actually, when you have enough money, all those problems go away.” Errrr….yeah. Thanks. So while I wish I had a little better Real Life, I am glad I have the support and friends I have. And I try to be support for those who I can.