After a few tough days, I decided to relax by going to boxing. A needed evil, healthwise which ended as a painful idea.
The class was small so we did ALL the time not doing sit-ups and push-ups on the heavy bag. This is not a good idea if, like me, you have muscles that tear like tissue paper. Somehow the idea that I access the muscle power, even when I am going ‘lightly’ to hit the heavy bag hard enough to tear the same muscles is odd. I did my 100+ sit-ups and 80 push-ups and several hundred combos on the bag (26 six punch combo's in a minute...ack, I am so slow!).
Also I sweated a lot, whihc is sexy and good right? Sexy, like the commercials, and then I have a cold drink I slowly rub down my body or something. Only my care worker helping me with a shower was like, "My GOD did you sweat." and when I was trying to be sexy went, "Are you trying to drink that or drop it, I can't tell?"
Plus all that ripping up the muscles kinda hurts the next day, just to let you know (kind hurts that night, stops sleep and stuff).
So the next day (today), I move like a crab and I try to get sexy with a can of root beer and end up dropping it.
Also, where no nerves are has made some muscles atrophy so much that they are just covered with skin: the bone, sinew and blood vessels covered lightly over with skin, like a tent.
I have this compulsion to cut through the skin at a couple areas where I can feel the bone underneath, just to see it (is it always white?), and the blood pumping along. This I have been told by a couple people, care givers and those who care, is a BAD idea. All sorts of infections, sepsis and gangrene can follow – turns out curiosity can kill this kitty.
Linda was brill, she saved an extra pain patch though this morning it had NOT kicked in yet so I woke like a dragon, WHUMP, my fire breathing decimates a village,
WHUMP, I burn down everything to the left. “AHHH, why are you making noise like the band section practicing?” I shriek. “T-A-L-K softly” I said with the intensity of my eyes bulging out of sockets as I seem to try to be strangling the care worker with my eyeballs. I had to send someone out of the room because the PENCIL was ‘too loud’ on the paper. WHUMP, the wild dragon girl has arrived.
Pain doesn’t make me pretty, makes me all want to eat the bitter, just to make it stop. Pain just makes everything loud and intense and I see myself being bitchy even when I don’t want to.
And then, when the patch kicked in, which it did so noticeably that over 3 minutes, I went from, “AHHHH, why are you so confusing when you talk!” to “Ohh, this is really nice Linda, I really appreciate how you have put these tastes together, that was very thoughtful.”
Linda wanted to know what the patch was like.
I said, “Well, I still hurt and ache but……I can think complete sentences. Oh, and I now have control over the volumes at which I speak. I also don’t just howl at the computer screen when I can’t find a file. It is…nice.”
So, due to boxing, I have edema pushed back so much that I have a shapely leg again, and I can play with my boobies and feel more tingle than pain. Plus, I can be a tongue in cheek goth again and eat flowers and stare mysteriously (there is no fun being a ‘wanting to shriek all the time in agony goth’ because you’re not a goth, you just are...wanting to die).
I am not sure where I can get the odd bonnet, or the amount of material – I guess I need sewing skills beyond mine. But I am good at eating flowers , which seems a requirement for all introspective angsty gals.
This is how Linda thinks of the patch and I think of the pain. Because Linda is about the ‘practical’ and ponders, and I just ‘ponder’. Which I am sure is good for something. Hold on while I eat some more odd stuff and get angsty while I ponder.
Yes, look at Postcard Project post and how 'Nothing Matters': so deep, and gothy.
This is Linda and I to a T, as I am using waxing on mentally about how things connect and the the historical and human connections, how this feeling has universal meaning and Linda is looking up going, “Oh yeah, did I remember to bring the towels in from the dryer yet?”
Hey, we all need people to care about towels being brought in from the dryer.
Meanwhile, I am high on a bit of hot sauce (the endorphins make me want to drink and either take my clothes off or kick some butt).
So thanks to Linda thinking about pain patches and laundry, I have a nice bed, and sanity, of a sort. I hope you have a good weekend. Linda and I are going to carve up the town, starting maybe with the banks, then onto robbing other things.
But first off I want to find out exactly what kind of webbed panties she is wearing – I told someone yesterday, I would try anything once, twice really, except for some sexual positions (once is enough to know, ‘Yeah..um, no, that isn’t doing it at all!’). So you have a kicking weekend!
What do I want for Xmas? Why world peace and free painkillers for all in need of course.
I’m serious, since the doctor has altered and increased my dosage for the 3rd time in two months, we are in fiscal fear. I am having an last ebay auction of manga here, sets complete and rare, some yaoi and some stuff I have been holding onto like signed books, and cult sets that cost a couple hundred to buy they are so out of print. It ends Sunday so the manga can be posted and received before Xmas. Money is used for 1) Rent, 2) Medicine, 3) Drugs, then if there is some left, a night’s room in Seattle to go to Sakura-con. But will see. No more ebay sales until at least March or April if I am able.
I gave blood a couple days ago. The bad news is every single vein blew (the vein walls are weak), making all these nice round blood eruptions dotting all over the inside of my elbow giving me the drug addict look from 60 yards away.
You can see how the branches of veins from the injection site, a wall blew on the vein, to the left, the right, below and above the injection. After the spurt which caused the 'needle injection infection' look, you can see the yellow of pooled blood under the skin. I told Linda I was coming in to the study to inject my next 'fix' into my eyeball or between my toes since right now all my arms are blown. That was a joke (the drugs part). What is more worrisome is where are they going to get blood next time? My other arm does not have a strong vein. Guess stuff changed in the months since the last blood tests.
I had some medical reactions from drug combos which had caused me to sleep and only be awake about eight hours a day. Now I am slowly getting better but the cell degeneration in my body is worse, as is the crazy Edema. I went to the doctors, and he asked me to take off my shoes and socks. Linda helped and there was one foot so large that it was like a soccer ball on the end of my leg, and my ankle couldn’t bend but the other foot was perfectly normal.
“Did I mention how each side of my body has separate circulation?” I said as the neurologist looked and then started taking blood pressure readings from both arms. Scientific method, I like that. Except my exposed feet had totally black toes in 10 minutes, like the black you see on climbers up on Mt. Everest for days. BLACK.
“Um…yes….um…” the doctor said staring at them before asking me to “cover them up.”
Then he checked my heart beat by using his hand to move my bra aside and nestling his hand around my breast with the listening device right by my nipple. This was an unusual place to hear my heart, but must have given him some added advantage because he pushed the bra aside to get his hand on the breast, I mean, listen to my heart four times in all. VERY rigorous exam.
He wanted to know what I write about, and he talked about migraine research. I mentioned how orgasms are one of the top ways to reduce a migraine for females. Which which is why, with Xmas rush, and relatives, and all the pressure, the tension builds and honestly, frequent masturbation will keep you from frizzing out, or help.
"Masturbation!" He was outraged, "A waste of an woman's orgasm (with me around!), you know! Heh...heh!" No I didn't since he was (even Linda agrees) clearly over 70. Oh God, time to check my heart rate AGAIN? I didn't know my breast was so good at conducting sound since he had to move the scope to many different spots.
The good news is I didn’t need to stay in hospital and he is taking the case, plus he is friends with Dr. Sacks (of the guy who writes the book, and the movie Awakening is based on), so he likes the unusual cases and is going to see if he can find anything on mine.
The bad news is there is no way to get IVIG in BC. This is because a guy with a name like Barry or Larry controls who gets IVIG for the whole province and his ego is somehow tied in to making sure no one gets any. I had heard another neurologist say, “Barry would never approve it.” but didn’t know what he was talking about. Apparently much like censorship or rating film boards, Barry only likes to give IVIG to the candidates he was taught to give it to, about 15 years ago. Now, it is regularly given for autoimmune diseases including Lupus and Neuropathy and helps people keep working and just stops the progression – the wonder drug. I hear from a neurologist that one guy has neuropathy so bad that they are completely paralyzed and only his eyes can move, but Barry still won't approve the IVIG.
This idea depresses the neurologist so he goes back to my breast. I try to cheer him up by telling him that the neuropathy is affecting one eye, much like the circulation issue. This perks him up and he plays with the light in the eyes thing watching one move slower than the other.
I leave there and give the peds blood station the hello kitty band-aids I got when I ordered gifts from Japan. 
I seem addicted to ordering gifts only to realize that I don’t have anyone anymore to give them to. Which kinda sucks when I have Hello Kitty with her friend saying, “I love mushrooms” inside a giant mushroom as stationery (seriously, what is not to love about that irony!). Last time I gave all the Hello Kitty and Anime stationery to an orphanage. Oddly, most of the stuff I get goes up in price until it is stupid price valuable, but I’d rather give it away than sell it. I have several boxes of gifts to give away, including a puzzle for a space/shuttle affectiano but it sits waiting.
Peds love the band-aids and so next time I will bring in the Hello Kitty cold masks I have ordered for them also from Japan.
So next time we can afford gas/petrol to drive to the hospital I am taking them, and they are really looking forward to them. Peds nurses are cool.
I end up missing my meds because I didn’t want to drink or take meds before the blood tests or neuro tests, so I miss three of the four heart pills. The delay in taking Lyrica for nerve and seizure disorders ends up with me having several seizures, which make me a bit ropa-dope. So later, very confused, and also with blue fingers, my Lifeline phone tells me “It is TIME to press your life line!” I do, and fail. And fail. I simply don’t have enough strength to press the button. The button is recessed so I am not able to push it down with my teeth. But I finally hit it.
“This is life line…do you have chest pain?”
Me (post seizure and brain of swiss cheese): “Yeah, I do, how did you know that? Is that why I had to call you?”
Lifeline: “Ms McClung, are you okay?”
Beth: “Probably not, I mean, do ‘okay’ people have their phones talk to them? Oh wait, look at that, my elbow is purple, that’s kinda odd.”
Lifeline: “Are you sweating?”
Me: “No, I don’t sweat, it is part of my ‘thing’”
Lifeline: “Are you clammy?”
Me: “Still don’t sweat. I do change different colors, kind of like those mood setting lamps they have in offices to sooth you.”
Lifeline: “I think you are in distress, do you want an ambulance?”
Me: “I don’t know. How do I know that? Didn’t you just ask the questions to figure that out?”
Linda takes the phone, after they keep asking me different questions and I am confused and it is 4 am and I keep saying, “I don’t KNOW.” Which is the truth, at this point, I don’t know if I am in South America, or if I am that assassin who slices off my marks’ heads and trades them in for $5,000. I don’t know why I have these alternate odd memories of being an assassin and working as a maid or setting up different hits and then taking off the head and double wrapping it in plastic inside a duffle bag. It is a pretty good job, actually. I get to do a lot of different jobs, though only for a week or so, waiting for the right time to take my mark down (steel stylus through the ribs into the heart and a little squiggle twist, just like they used to give for lobotomies – presto, one dead guy – now, time to take the head).
I pass out. Then there are guys standing there asking if I need an ambulance. I tell them that I told lifeline I didn’t know, and why did they send the ambulance? The senior guy calls off the REST, which is the second ambulance and the fire truck which are coming (to take bits of me?). We talk and I tell them what my blood pressure will be, and we talk about the local pyromaniac, and it turns out one of the Medics lived right down the street from him. I am not sure how much my neighbors enjoy this conversation at 4 am.
The next day I talked to Lifeline. A guy calls me. He wants me to use a box where there are straws and I need to puff and sip into them. This is because I have to push the button, which is recessed and I don’t have the strength to do it (either by biting, using my thumb knuckle or index finger of the right hand) normally much less after a seizure or during a stroke. I don’t think this is going to work, and ask: What do users with degenerative diseases do? He thinks they stay in bed and have the puff and sip box (larger than a box of cigarettes) by the bed. I do not want to spend days in bed. I cannot do as much as before but I can get out of bed, and wheel to the study. I can even get dressed and put on earrings, despite the knowledge I am not going out – this is the femme rebellion against an illness that steals life away: earrings, Satsuma Body Butter (Yum!), lip gloss, Linda braiding my hair and a push up bra.
I sleep a lot on Saturday, and on Sunday we get up early and match and stamp. I got to match from the three new postcard books I got from Amazon, and one from a Ghibli of Oga and other artist for Studio Ghibli (Totoro, Spirited Away, Howl’s moving Castle and others) shown in a limited exhibit.
The exhibit had a special postcard set, I found a set online, waited for it to go on sale and bought it for $40 (16 postcards). Why? We need medicine and I spend $40 on 16 postcards and shipping from Japan. Because these were high quality art postcards from a great artist. This postcard of Porco Rosso, free in the sky ('A pig's gotta fly'),
available no where else, which once sent I will likely never get or see again, if I can send this to the right person, just might make the difference between solitary sadness and the feeling of knowing that they are special, and will always be special. It is stupid isn’t it, to exchange food and a little more security this month for a belief that not just getting ‘a postcard’ but finding the RIGHT postcard for the right person can make a difference in how they feel, and feel about themselves.
I think some days that like Don Quixote, I have spent too much time in reading and believing that my mind had ‘dried up’ as I believe that all scullery maids are princess’. But I do believe. And while I often fail in matching the 'right' card at the right time, but when I do, it matters and I am, for a time, worthy to be living a life of service...for a time. So with Linda and Cheryl’s help, we matched postcards collected over the past two years, and stamped them,. I was in the study writing postcards for hours until they had to cool my spine. You see, the effort to write so much was overheating my spine with the amount of signals it took to try and move my hand for many hours (due to ‘dead end’ circuits, the body ends up sending huge amounts of signals in order to get one through, so that the hand and arm and fingers can move). I ended up passing out from the heat coming off of my spine, but they helped cool me and I continued. And over 60 postcards get sent out that night.
That was a good thing. I hope the postcards will help people at Xmas time, which can be a lonely time.
Saturday is punky, my face is grey says Linda. I have conversations in bed but can’t see. Typical. This pisses me off, so when I do see I try to go for a walk (the nature of not feeling means no matter how high the blood pressure, heart beat or lung pain, I don’t feel it, or my feet or ankles, so I use a walking stick and sort of bounce around, leaning up against things. I make it outside purely on adrenaline, because truth be told, I am having my period and so is Linda and so emotions are high (like how C-4 sometimes goes ‘bang’ high). Whoever said women shouldn’t be president due to periods is WAY off, as only some/few women (like me) want to kill people and only on one or two days a month, as opposed to an entire government department of guys dedicated to war.
I pass out, or so the stains on my clothes tell me. I keep losing consciousness but Linda and 15 strangers offer to help, I think 14 of the strangers think I am drunk and passed out. I have several small seizures. This only adds to the ‘drunk woman’ look. I hope this means more people will talk to me in the future, as drunk and passed out is far friendlier than scary disease woman. Somehow, I end up at Starbucks. Starbucks is much like going to the hospital: I sit in the wheelchair that arrived with Cheryl and they stop me falling out of it until I can talk again and there are machine noises and beeping. I decide to steal the chocolate bits out of the top of Linda’s Hot chocolate and miss, ending up with whip cream all over my face, having totally dunked myself in her cup. I am sure this will add to my ‘drunk’ rep.
Some readers think that I am an attention seeking addict. I know this from the various comments which are left anon about me getting a ‘fix’ and such. Ironically, these are people I have probably worked through the night to send postcards to, and still do. (sarcasm) Yes, I am an attention seeking drug addict, who is only awake a few hours a day, never gets to go out, has the windows covered to keep out the construction noise – I find spending my time indoors talking to no one the best way to get attention. And the patches work great, except that they leave burn/blister marks where I have them, so my arms and back are covered with those.
The doctor I have treats cancer patients and other late stage/pallative patients. I think those who judge me as some sort of drug junkie would see all of his patients, those dying of cancer as ‘addicts’ or ‘getting our fix’. If someone really has the time to believe or worry about such things, that after two years the desire to not be in pain=drug addict. Because apparently the idea is I could hand my medical file to a doctor (in a city where waiting lists to have a GP are in the hundreds PER GP), have him examine me for 40-50 minutes for four times and each time he up my pain medication, even over my protests the last two times just because I just tell him, ‘gosh my back hurts’ (I don’t tell him that, I tell him about waking up with my teeth clenched so hard that they make cracking noises like ice, but only because he asked, and he nodded as this is something he has seen before, this pain symptom). He is an odd doctor, I explained how I am used to being in pain and now that I can see straight instead of through the red filter of pain haze where no jokes ever make it through (I laughed on Friday, almost hysterically, I haven’t done that in two years). He keeps trying for me to not be in pain. What a strange doctor.
The Fentynal is supposed to be on Pharmacare, but the doctor said that they will take months of tossing it back and forth. I didn’t believe it but Linda said it is true, as he sent in the form right away (a Pharmacare exemption). After a month they told him they needed a detail about if I had tried codine. I had, and he sent it back the next day. Three months later. He says if they keep sending it back asking for details each time, then it never gets an exemption. Even if it does, they never pay back the costs of the Fentynal you buy while waiting for them to decide. You can’t apply if you haven’t bought and are using the patches. Cancer patient often die before they get the exemption. It is a cost cutting game. People lose, but the government wins in saving money. Sad.
I have learned that I really only understand three time periods: Before (when I can remember things from being able bodied), ‘What I know’ which is either all yesterday or this morning, and NOW. So everything that is told me that I remember about costs, or problems covering pill costs, or medication costs, or food costs, it is all in the ‘What I know’ and I feel it all like it was told to me this morning. I do not know that one financial problem may have been told to me six months ago and another last week. I just know them all in ‘What I know.” And I try to figure out how to get a job. I kinda hate NOW because it is filled mostly with money stuff related to medical costs from ‘What I know’. We can’t afford batteries, we can’t afford the phone, we can’t afford condiments for food, we can’t afford multivitamins anymore, we can’t afford the pill, which was keepin Linda and I regular and also lessened mood swings. Because we are married to each other, we can’t get them for free, indeed it is really expensive. We can’t afford the B-12 I need, but it was a gift (thank you). We can’t afford the vitamin D and the Fish oil (to make my veins stronger to stop them from bleeding out all over like mine did. I want beef jerky for Xmas, because I can’t afford that either. We can’t afford hair cuts, and mine has tangles which will serve as nests for small birds come spring time.
This is why ‘NOW’ sucks and why a doctor talking about extending my life depresses me. I am supposed to be happy when all I think of all day is how, on Fentynal, tramacet, tramadot, Lyrica, pot, codeine and aspirin with tension every week the rent is due eating stuff from the freezer, and the dinner of rice crispy squares I had tonight (go rice crispies!) and soup last night. All the tension Linda has had about money from the last year I remember in a big BLAMMO, like it happened an hour ago. I have that memory and feeling every day, every morning and afternoon. I just want us to be able to be as well off as when we were students for over 10 years, and could have a pizza every now and then. Back then I would work an extra job, until I had 2 or 3 or 4 jobs if needed. Now if we have a pizza, that means no thyroid medication for a month. Just a life where I can live peacefully, with caregivers (Linda is meeting with the manager as I am being moved to ‘critical’ in care), while Linda job hunts and then we spend evenings together.
Linda said she is going to write a blog post on Girl’s Gotta Fly so check that out tomorrow. If would like stuff, please let me know, because the problem when I don’t hear from about 50+ people in months is that it really limits my gift giving, which sucks. I buy the gift, then Linda reminds me that we haven’t heard from them in a year or two.
I got Linda her music box from Kiki's Delivery Service, and she liked it, though it wasn’t Xmas yet, it had been a rough week and I wanted her to know that I love her. And now I make sure to thank her each night: "Thank you for taking care of me today." It matters, what she does.
And Cheryl, I gave her one of her presents (Linda has another one coming, so does Cheryl – I got them when I had money from the last manga sale). Know a person and you know the present. Cheryl likes guns, and while buying her an actual GUN collection would be difficult and illegal in Canada, I was able to get her mini-replica guns from a Japanese Hobby store where you can add clips and scopes to the six to ten different assault weapons (including a AK-47). Cheryl was very happy, “Oh a blah blah automatic SLR with grenade launcher! It has been years since I shot one of these..” Cheryl reminisced.
I thought, and hoped, she was joking. I know she was a law enforcement ranger and ‘secured’ facilities after 9/11 but a GRENADE LAUNCHER? No, she wasn’t joking. Turns out some law enforcement people like to collect guns, and shoot them – imagine that. She like them. That made both of us happy. I imagine maybe Xena warrior princess is now sporting an assault weapon, but I certainly hope the figurine character from Yotsuba!! Isn’t playing with guns, no no, leave the AK-47 for Hello Kitty! 
As my grandfather used to say, “Guns aren’t a toy. You could seriously hurt someone. That’s why you have to be 10 or 11 at least before you shoot one.”
But honestly, for Xmas, besides world peace, what I would love for Xmas is home stability – so Linda doesn’t have to try and do everything on her own: for example, a couple someone’s to help pay for the Lyrica, which has to be ordered every 2 months. Without it, I have, on average, 15 seizures a day and nerve pain. Which isn’t the ‘good workout’ pain. Some to help pay for Linda’s anti-depressant and anxiety med (when your caregiver, who has 4 of the top 5 stresses possible outside of war going all the time and she DOESN’T have her meds, it is very scary for the helpless person). And help to pay my OCD and anti-depressant med (it took me 8 years to find the right one, and without it, well, I start stabbing things through myself, or I did before – it is for people resistant for SSI) which is ordered every months or so here - I used to take 4 mg, I am not sure what Linda gives me now, I think it might be 6 mg or 8 mg under doctor’s prescription – on a side note, it has been found helpful to reduce pain in over 45% of people with fibro. Also the patches, which I am not sure how much they are, but Linda would (her email is Linda.mcclung at shaw.ca), as the doctor changed the frequency from 3 days to 2 days, meaning a 50% jump in the amount of patches we need for a single month.
Am I embarrassed to say, “If you want to give an Xmas gift, please give pain pills or anti-depressants, as the thyroid med is covered by Pharma-care.” Sure. But having a life where I and thus Linda think about his and only this from morning until night sucks worse. There are lots of stuff we could do with apple juice and cinnamon and cloves. Or watch movies from the library.
If you do buy a Xmas gift, or set up with Linda to help sponsor a medicine, please let her know YOUR address, so I can send you a present. I send presents not just because it is bonding or polite (though it is) but because I want things to be where they can be happy, with caring people.
Linda is here, so much for a short little update.
News of the Year: I have a possible GP.
So far he has passed five of the six tests already. He was recommended by the Hospice and Palliative Society for me, and while he is NOT taking patients, that recommendation got an initial meet and greet. I didn’t want to blog about it because the number of GP’s who have turned me down have been around 30, and another 10 or so specialist, so while I was nervous enough not to sleep, I wasn’t going to announce it as good news. Except:
1) Met with me, and didn’t immediately say that this was too complex, too thick a file. He did say he did mostly cancer patients and had not had experience with my condition….but he would take me.
Actually seems to listen to me and believe what I say, instead of immediately putting me in the ‘hysterical female’ grouping (come closer, I can be a LOT more hysterical!)
2) He met with me a second time, for 45 minutes and gets that doing a meeting like that puts me out for a day, also after disclosure of orientation 
(Him: 'so, who do you have sex with? Me: Her! (as often as possible, honest!) Him: So, not a lot of need for a pap smears for HPV then) and that dread initial diagnosis of ‘conversion disorder’ he didn’t drop me due to ‘religious belief’ or ‘not a good fit’ Oh, no, I am starting to feel...what is this feeling again? I think it is called, Hope.
3) Linda described to him about the pain of this week including moaning in sleep and he PRESCRIPED A PAINKILLER! Wha? Prescribe something for a problem? Does this doctor know how to be a GP in Victoria?
Seriously, he specifically prescribed a Fentanyl patch (lowest dose) which has the advantages of: releases for 3 days, can be applied even if I am in too much pain/autonomic failure to swallow or understand what is going on around me. He said “If you don’t notice any effect, we will increase the dosage”: after so, so many doctors have refused to help with pain due to having to use the ‘triplicate’ form, which means one goes to government. So, after going to the US hospital, their evaluation was ‘pain control was the number one priority’, and that was over two years ago. And now, I am PAST the huge 'three page form' wall and moving toward real pain control.
Fentanyl is 100 times more powerful a painkiller than morphine. Before you freak, that is dependant on the person, like for me, it might only be 95 times more powerful than morphine. Yeah, that was the joke.
But, Fentanyl was recommended to me because it has the patch AND can be prescribed in very small dosages, then raised as needed. I am now taking six different pain killers daily (good thing I have those six fingers on one hand, to count them!), and this Fentanyl is the third opiate/synthetic opiate. But if it actually makes the pain go away, that will so improve my quality of life. And with the better quality of life, I will be able to smile and joke (when you are clenching your jaw in pain, the funny goes away), my loving and caring spirit will emerge again to woo children and wildlife with its pure innocence.
Or something like that.
So the doctor has seen me twice and is already working to improve my quality of life. Crazy! Is this doctor REALLY living in Victoria?
4) Plus he is talking about calling the Neurologist and seeing what type of mediciations, like IVIG or others which he can administer to stabilize my condition (I know, after over 100 tests from over a dozen doctors and none working to do that at all, I am in shock). It took over a year of constant trying to get synthroid and now, we have Fentanyl.
5) My concern is that some specialist have not told the truth in their letters (in person they say, ‘There is no treatment to offer you’, while the letter says, ‘Client was offered treatment and declined’ – odd that even specialists can do revisionist history if actions makes THEM look bad). I am worried that combined with what they might say on the phone will make it so the next time I see him there is the ‘I don’t think I am the best doctor for your needs’ (regardless that the neurologists haven’t seen me in over 2 years and as I said to him, “It is REALLY hard to be B-12, and Vitamin D deficient by ‘conversion disorder’)
He uses the UN standard, NOT the ‘minimum Canadian standard’ – Canada has, due to socialized medicine, some of the lowest ‘minimum standards’ in the world.
For example, when the UN goes to Sub-Saharan African countries they use a standard of Red Blood Cell count to declare someone ‘anemic’ and treat them. While the same person, in Canada, they are not low enough to be considered anemic,
. Plus, even if they are the bottom or below a 'health standard' like being anemic, as Cool Aide demonstrated, many homeless people show up as anemic but are not treated at all.
B-12, which I have been low in, has never really concerned doctors, I have never been ordered to supplement OR get a shot immediately until NOW. In Japan, the lowest amount of acceptable B-12 (which causes nerve damage, sleep problems, and nerve pain), has been raised from 200 /pg/ml to 550 pg ml in 1988 while in the US 350 pg/ml is the ‘lowest acceptable’ level as even those at 500 pg/ml have been found to be ‘deficient’. Long term deficiency results in permanent destruction of the nerve stem in the spinal column. In Canada, you are not deficient until you are under 150 pg/ml. My father was at 39 pg/ml before he was treated, and I was in the low 80’s. I have been frequently been at 139-155 without recommendation for treatment (like over a year in that range with doctors not concerned in Victoria).
My doctor said that I was to take B-12 either sublingually daily (maybe more than once a day) or shots until I am at a MINIMUM of 250 pg/ml. Also, he said Vitamin D involves nerve pain and use and I am deficient in that and increased the prescription subliment by 50-100%. I am totally stunned.
I think this is called, ‘proactive doctoring’ but I’m not sure as I've not seen it in this city.
6) The GP said he liked me and that I was a ‘character’ or had ‘character’ or ‘would make him lose hair’, I one or more of those three.
Plus he does HOUSE CALLS and understands that Linda will need to come in for me if I am too ill. Wow. Wow.
I dragged myself up to boxing yesterday and did my exercise, I was too sick to go the week before so I did a double effort to sweat: my sit-ups, push ups, and then worked the whole time on the heavy bag, doing speed jabs,
speed hooks and then combinations, where you use speed and accuracy. I did 4 punch combos, 5 punch combos (15 then a two second break, then back again, then two seconds off, then 15 more, for three minutes), four of my eight punch combos, then two of the 11 or 12 punch combos, doing each three times, and finishing with a 16 punch combination.
I felt exhausted but was sweating and endorphins made me smile.
All is great until the endorphins run out sometime around 4:00 am, the pain hit! I had put on the patch at 11:00 pm, but it takes 12 hours to be absorbed and right now, it isn’t doing much. So some bed time for me and the plushies.
If I survive the next day or two, I will be able to see out of both eyes again, I am sure.
Last night, I watched ‘Kick-Ass’, a film based on the comic by Mark Millar and Steve McNiven. There is an excellent documentary in the special features about creating and inking a comic showing these two. The film was picked up by Linda and had the highest IMDB rating I had seen. It was amazing! The idea is about a guy named Dave, 16, whose only talent seems to be his invisibility to girls, and his crush on Katie, the girl with the locker just down from him. As he goes to hang in his local comic store, Atomic Comics, he asks his two friends, “Why is it that no one is a superheo? I mean, why do people just do nothing?” So while buying online he adds a green spandex suit to his basket. Thankfully in New York, you can hang around in a green suit with two baton’s in a holder on your back and not have anyone notice you. He did ‘patrol’, he did a lot of posing in front of his mirror but nothing really happened. That is until the two guys who mugged him were stealing a car, and he stood up to them.
They totally whooped on Dave, then as he staggered away, he was hit by a car and ended up in hospital. In the ambulance he begged the EMT not to mention his costume (cut away) to anyone. He slowly recovers (his statement that now many of his bones have titanium rod and plate reinforcements was “Cool, just like Wolverine!”). Dave also has neuropathy damage and he can’t feel pain that much. Or as he puts it, “My super power is a greater tolerance for being beaten”
Once Dave makes it out of the hospital, the good news is that Katie now is totally talking to him, and wants to be friends. This sudden break through of ‘cool’ is dashed when his friends tells him, “Oh yeah, um, well everyone knows about how you were found naked after some guys had their way with you, so um, the whole school thinks you’re gay.” And Katie gushes, “I’ve always dreamt about having one of ‘you’ to talk to……not that I think all of ‘you’ are the same or anything.” A choice of hanging with Katie as her new gay BFF or telling her the truth has him soon getting loans of Queer as Folk and doing ‘sleepover pedicures’.
Meanwhile, looking for a lost kitten, he falls on some guys after another guy. And decides to defend the guy beaten on the ground against these three full adults. He yells at a kid his age to call 911. The Kid runs to find the largest group his age and shouts about a fight instead, and everyone goes to video it. His ‘stand’ ends up on Youtube and goes viral. Suddenly, ‘Kick-Ass’ (his name for his superhero) is a real deal superhero.
Enter Nicolas Cage as a rather psychotic father, and his even more psychotic daughter Mindy (maybe the whole, ‘never going to school and only training to kill people’ doesn’t help). We meet them as Nicholas Cage is teaching 11 year old Mindy how to ‘take a bullet’ by shooting her. It was pretty much love at first sight for me. They are ‘Big Daddy’ and “Hit Girl” (she has purple hair and an outfit to match including a plaid school skirt and purple coloured knife holder).
She is also a totally lethal machine, who flips, shoots, knifes, and garrotes bad guys. “Kick Ass” scrambling away in green is like Amateur Hour on the Gong Show compared to her.
Though sometimes, particularly with Hit Girl, they remind you that she IS 10 or so (he is only 16),reminded to you when a bad guy actually hits her and knocks her almost out, being all of 58 lbs and all.
You will have to rent or see the film for the rest.
The author, Mark, a Scot from a small coastal town had at 15 with his friend listed ‘Be a super-hero’ as a career choice and done weights and ‘patrolled’ his town. As he said, “It was a small village, and if we were LUCKY there were TWO town drunks!” But his comic, based on a lot of his experiences and fantasies, hit a cord and went right away to number one, selling out three printings. One of his instructions, besides the plotting was for his artist to have NO BLACK.
In Comics, from 1930’s onward everything was in white, with characters drawn on. However, in the late 1980s’ Frank Miller revolutionized ‘Graphic Novels’ by reversing it and having a dark black background in Dark Knight with everything drawn on THAT. Soon every one would follow. Now, Mark Millar wanted to do an entire comic with NO BLACK. What that did was a) make his comic look very different to other comics and b) make his other colours stand out. Even his publisher didn’t notice what it was as they told him after three issues, “Your colours are amazing, and your comic looks so DIFFERENT.”
Mark Millar metions in passing that he had ‘worked with Steve on a Wolverine type story.’ That got me into late night research as what story could it be? It turned out to be this year’s eight Eisner award nominations Old Man Logan, which I had on my wishlist until I found one on sale on ebay. Now the book, just released, “Kick-Ass” is on the top of my wish list! So, this is good year for Mark, a movie BEFORE the comic release run was finished AND Eisner Nominations for his last project.
So, go, go the red haze of pain: and if the ability to absorb pain can be a ‘power’ for a superhero, that seems like I totally up for the job then doesn’t it? Go EFM and her flying wheelchair of justice!
Other surprise good news that I won a review writing competition, and won two signed yaoi manga and a package. Woot! See, it totally pays off, spend all money on manga, and eventually get some free! Yeah, total sense - happy yaoi Halloween!
Also, I am having another/final ebay sale for the next two weeks of rare and out of print manga, or complete manga runs, including new ones. This is to a) raise some money for medicine/pain killers and b) put some savings away so I can raise money so that Linda and I can both go to Sakura-Con if I am here in the Spring. I recommend, Jyo-oh-Sei, which took 10 years to write, each book is 400+ pages and was so popular they made an anime (also a hit) out of it. It has two twins who are, without warning sent from the elite satellite station to the ‘Beast Planet’ – an unofficial planet where people are sent to die, since the death penalty is illegal. Only, people have lived, in this the EXTREME world where plants at the top of the species, and now these two brothers have to learn to as well, or die. Goong 1-9 is about, ‘What if Korean still had a monarchy’
and the story is loosely based on the UK (if Charles and Diana were teens), a girl is wed into this family, not fitting in, a marriage of political arrangement – modern but using historical Korean terms and monarchy tradition. While Les Bijoux is a great gender bender of a two spirited son, who has vowed revenge on the ruler who killed his parents. As a male, he works toward that end, however the ruler keeps seeing them when they are a woman, and falls helpless in love, and she is starting to feel something back. What to do when the other half of yourself is trying to plot revenge against your lover? Tough one! Another 50+ listing to go.
There is also a new post over at the postcard project, please check it out (comments here and there ALWAYS appreciated) – thanks for all the comments on my last post, it really made me feel better about opening up on my conditions that are most likely to exclude me futher from people.
I wonder about when ‘those things that must be done’, the horrid things and the tedious things that it takes to keep going and allow my life to continue somehow BECAME my life. 
There are times when maybe they are part of my life and there are ‘survival times’ when it is just that: surviving. But with my memory problems, it is soon that all I know, in the smallest fibre of my soul is that I am devoting my all to keep the organic systems that still kinda work still working: spinning plates with shaky hands.
I am in the tail end of more than a week of a heat wave. It is hot enough and long enough that I all know is this little room and the air conditioner here. I sit here in Indy and sleep in the makeshift bed beside Indy because outside this room, the apartment is in the 80’s to 100 degrees plus. And outside, the heat extends another two days. Going to the bathroom is a preparation in endurance, because the heat makes me fall over, fall down, limbs not working, brain not working.
Heat hurts. It is like having salt blocks weighing your back and limbs down: grinding your joints, making the muscles scream in stretching, creating invisable sores. The body aches, it cannot stop from aching. Even in the little room it hurts. I sit in front of the air conditioner and I am thankful that it is not worse, and I hope that this time I can keep my sanity. This day.
Four walls, and an air conditioner which sent me into tears for half a day because the compressor wasn’t coming on. And if the compressor didn’t work, I didn’t have anywhere to go, and it just got hotter. Each day my gut was full or more air, my lungs not recovering, purple hands and arms all the time, because of the room and the limitations of the temporary bed.
This is supposed to me telling you why though I am doing four hours of research a day, my blog post on Oregon is still coming. This is my fourth time and second day writing this ‘short’ explanation because I don’t know how to make the surreal real or make it so readers know that a clonic-tonic seizure hurts every time, and so does heat exhaustion. And my lungs are tired of breathing. And I am tired of reminding them. Because I asked Linda last night, “What goals do I have.”
“Stay alive.”
“What plans?”
“Stay alive.”
I drag myself to the bathroom and back to bed. I did it backwards yesterday because I didn’t know if I could drag myself forward anymore. I spent the hours needed to evacuate my intestines and I wasn’t well. The night was pain and I woke to a fast pounding heartbeat of blood desperate to trigger the sweating, to cool me, but it can’t. I had a headache, a fever, nausea, dizziness and skin that was actually grey.
It was full heat exhaustion and I could barely move my head. So I did a little research and resizing of photos on the Oregon blog post until I couldn’t see right anymore.
Then I lie back because I knew I wasn’t going to be able to lift my head again. That day, I needed help lifting my water to drink. I lay there in Indy, until sleeping, then dragging crawl to the bathroom, and then back into THE room. That was a long couple days.
I want sick leave. I want to be allowed to relax and exist as a sick person, instead of just being ill. I want the luxury of being depressed. But I can't.
Because even sick I have to remember everything, from what pills and medication when (now 10 different times a day), and drinking always, the same water, three to five liters a day or more (now you know why those Brita filters on the wishlist are important to Linda - try sucking down five liters of gagging gross water every day: try watching some you love having to do that). Even when I can’t lift the bottle, I have to drink. “Are you a quitter McClung?” my inner coach yells at me, “You want to spend days living with consequences because you are so lazy you can’t do what you need to now?” Any insult as long as it works. Oh, I am tired the hurting heat brings, and my brain and the world but I drink and count and take pills (and then try to take them again because I forget and have to be stopped, or panic because the pill container is empty); I check about the visits we need to make, the forms to be filled. I can’t lift myself into the wheelchair but if I don’t get the toxins out through my pee, they won’t come out at all, and I drag myself to the bathroom again.
Last night I was so weak that I couldn’t move my head, couldn’t turn it, and it had fallen to the left. I woke four hours later with it still there, not a movement of a muscle on my body during sleep, I was so exhausted. But it was time for me to pee, time to drag myself to the bathroom. 
And then I would sleep some more.
I wonder if this is why others with this disease die and I don’t. Because they took a day off? Or they took some afternoons off until they could only lie there, unable to do it anymore?
Linda, when relaxing reading a book, or job searching goes to bed three hours late. She can’t remember a time when I just kept doing stuff because I was having fun, just gave into temptation. She can’t remember a time I slept in during the last two years, not when I wasn’t unconscious.
And during this I still work or plan on going out, on working hard. Even though I can’t get better, can’t regain function, I can only slow the degeneration down. Loss is when things are out of control and we hang on and see what is left at the end of it.
I feel like I am on a small sailboat and everyone I know is on a cruise ship ahead of me. Their life moves on, things come in and go, relationships, plans, sometimes they just don’t have time anymore, and they stop coming to the back of the ship’s deck to yell things to me. While I am in my little boat tossed about by the wake of the cruise ship, but trying with everything to keep up somehow, to be someone they would want to be part of their lives. But the reality is they can't hear me, not way down here, and the sound of life, the waves, the wind. That's what the blogging is, trying to do more, trying to show that unheard doesn't mean gone.
I bet a lot of you know that frustration.
People up there, way up above the sheer walls of a ship, say I am inspirational. If that is true it means they are inspired to places I can’t go, to lives too busy to include me. When for me, THEY are the ones who inspire me: to keep going, to keep at it because I don’t have blood family and the one place I want to be is up there with them, 
and it is the one place I can’t be.
We should be thankful for the trivialities and little choices in our lives. I don’t want to stay alive, I want to LIVE. And if you don’t know what the difference is, then you haven’t fought for it.
I watch the TV show Mercy which came this weekend.
It is written by a woman and I can relate to almost every patient that comes in; the nurse with PTSD and the chronic illness, the degenerative illness, the anorexic. When the main female nurse finds the girl at 11 who has been pimped out by her mother she goes in and punches her screaming, “You did this to your own daughter!” She faces hospital discipline from the (male) doctors and says to her friend, “If I was a guy, this wouldn’t be a big deal, the police didn’t see it as a big deal.”
Her friend says, “Yeah, ‘if I was a guy’, but you aren’t and now it is just on how to get by.”
I do laugh at the doctors on the show when they say that doing an operation on someone with an oxy-sat of 90 is ‘too risky’ because my oxy-sat was in the 70’s over a year ago. That’s a doctor view, an organizational view: ‘too risky’ – when your life is what it is, and you have to keep surviving, there is no ‘too risky’, no matter how scary it is.
I watch Linda struggle with finding a job, taking care of me, 
trying to find a program to fund some of the pills, to deal with everything by herself. I get frustrated at my helplessness. I am told, “It isn’t your fault this is happening.” But it doesn’t feel that way. I want to put myself in a coma and get out of her way, only I know that doing stuff like that would just make her life harder. And love is making sure you don’t make their life harder if you can avoid it.
One more disc on Mercy and then I have to sell it, hope to get half the price needed for the next DVD set. Or maybe use the money for the water filter replacements we need. Always more water. Always more Florestor needed.
I don’t know what people I do. I don’t get depressed and lie in bed. I don’t feel sick and lie in bed. I don’t lie in bed reading. I don’t lie in bed watching TV. I work until I can’t move, until I can’t think. 
I work until the pain is so much I don’t make sense any more, and then I watch a DVD set. Because engaging means less pain control, which is less cost for Linda and less pain for me. Engaging means more language routes in my brain which matters when there are a lot of seizures and strokes. Because I am the expert of my illness and need to be able to write (though often backward) what to do to home care or Linda in order to help me.
Sure, sometimes I stare at the wall, or at nothing (that’s called a seizure!). Sometimes I stare at a wall because I am paralyzed and wait until someone comes who get that I need to have my head moved, and headphones on and a DVD in the computer. I have done the wall staring too often, and recently had a six hour stint of wall staring, unable to move, except for a thumb. And that isn’t much help. And after six hours I slept, and then, for an hour after waking, stared again. It is a boring wall. I have sussed the literal, metaphoric, symbolic and intimate meanings of it. And that is WITH a fuzzy brain. So yeah, I always need DVD sets. That’s what the DVD sets on the wish list are for.
The manga is for the bathroom, where I have to spend at least 18 hours a week to stop from getting impacted. 
For the rest of the time, I am doing: trying to get done what used to take 10 minutes in two hours. I went for a wheel up to the library to pick up some holds and hurt the right ribs, the OTHER side of my ribs. So that was sort of funny for the first 10 minutes. Too much to do, the aggressive defense of keeping a life, instead of being alive, even if that is just two emails during the three hours I am functional. And the things put off, that need to be done because they didn't get done before I passed out or had a seizure, or just couldn’t move anymore. “Time to watch something.” Linda says then.
So that is what those manga, books and gift certificates and DVD sets mean in my life now. They mean I don’t spend the time staring at a wall. Everything doubles up here, even ‘entertainment’ has to have at least two functional uses. But more than anything, it means I have something to look forward to. Going into the hottest room in our house for three hours to be rocking back and forth and HOPE that the intestines are producing lubricant (imagine passing gravel without lubricant….for hours!) is hell. No getting around that. But knowing that for the minutes I am not just staring ahead and hanging on, I have Biomega, or Lucky Star or something good to be able to read for a few minutes at a time can make the difference between crying for an hour while in the bathroom and not.
Sometimes what tips the scale over toward sanity or just holding it together emotionally another day, or hour is a letter, or a manga I enjoy. Or rocking back and forth turning a DVD set box over and over again in my hands, then asking Linda to read the description, trying to imagine and anticipate getting through THIS, the thing that has to be done, and what good thing is on the other side.
And that is why I am so thankful for everything from letters to gifts and gift certificates.
I have to eat a pickle a day, as it irritates my intestines (which helps), and I loved pickles. I told Linda yesterday, “Oh, I was a kid and I loved pineapple, and ate it and ate it and ate it until somehow I couldn’t eat it for over 10 years after one gorging.” I picked up the container with the pickle of the day. “Promise me that after I die, I don’t have to eat any more pickles for a while.”
This is what passes for humor some days.
I long to take a break.
On the trip I passed out so often on the toilet, or at the end of the day and Linda was too tired that sometimes she just left me there, on the bathroom floor. What else to do? No health insurance for the US, no health insurance in Canada. So I am passed out. I am woken to another day, and I struggle and get up.
The shotgun in pressed against the back of my head. “Try or Die” it tells me. And I am not going to be the one who dies. Not this week. And not THIS heatwave. Not this month.
So today was my day to get ready to go to the Cannabis Club. That takes over an hour and then I got to drive INDY all the way there, which was over a mile. Yes, having a power chair does give me an advantage, it also threw me around like what you think the post office does to your presents at Xmas. I hit every pothole, every bad curb cut, every bad driveway, I was tossed back and forth. Where is the serene music that plays and I sweetly glide down the sidewalk that the ad showed? Oh well, maybe I shouldn’t go on the ‘super speed level’ all the time. Though my first thought was; “Tell techs to make these level go FASTER – I mean I was hardly at a running pace!”.
Yes I realize that driving at like, 15 miles an hour on crappy pavement and then complaining that I am not getting a great ride is irony or something. But for $25,000, I wanted a freakin' hovercraft, okay? Like superglide suspension! But instead I was the 'Wheebel Wobble Wheelchair Person' (remember the Wheebel Wobbles', they Wheebel and they Wobble but they don't fall down! - insert jingle?). And when I slowed down, the bumps were just worse so I figured I would only slow down around humans since I think I have three broken toes now, and if I can do that to ME with this power chair, I don't want to hurt someone else. And I slowed down at traffic lights and the 'quote' curb cuts, known as the 1/2 inch to 2 inch straight drop. GRRR!
But I got to the club forms and explanation took 90 minutes and since I am still up from all day and need to sleep instead of waking up and writing this I will make this account short. This club is the professional club and they recommend that I get the official stamp of approval from the Canadian government to make travelling in airlines and such within Canada easier. With my disability Tax Status that should not be a problem I was told. They explained the different strains and what I should expect. I bought the mouth spray ($20 for the large bottle) which acts in two to five minutes maximum to cause relaxation and pain control (that is the ‘strain’ I chose NOT the stimulant one). That way if I am waking up having a ‘hell night’ a few spray in the mouth and I don’t have to wait for 20 minutes for a tranquilizer to kick in. 
I also got the slower acting olive oil based one, which I take at night and I will try a baseline this weekend to find out how long it takes to act: from 30 to 120 minutes. They have cookies but recommend that you start with 1/8th of a cookie and that you have OTHER, non cannibis cookies because if you are waiting for over an hour, a chocolate chip cookie can look really good, particularly if you are a ‘munching’ TV watching, where you nibble. And before you know it, yup, you have overdosed and are in for anxiety and high heart rate: proceed to a dark room for 1 to 2 hours without passing go. Sounded like good advice to me.
It was hot, and the sun shined all the way there. It rained all the way back and then the sun came out after I got inside.
Yeah one of those kind of times. So besides that I got soaked and had frostbite so bad my fingers were literally the purple color of grapes due to my vascular issues and Raynaud's (that is just was rain does, let’s see what SNOW does…NOT!). Also had a bit of a medical issue later which stopped my nap.
Right now I am finishing up the postcard matching for the weekend. Like the postal service, not sleet, nor hail or dead of night is going to stop me. I am sorry I can’t do big numbers but this has been a pretty bad week – today I couldn’t get out of bed. Like, not possible. Of course, that isn’t the EFM motto, so I just sort of dragged myself into a drop of several feet. Whee, I am out of bed now! Okay, I am on the floor, but that is still out of bed! I was a few minutes late to my appointment at the club.
I enjoy matching the postcards, I hope the people from last week can take a picture of their postcard for me please as I did not get a picture of them, so rushed was I in doing them. Well, off to bed go I. Cheers.
In just one day, things change.
I took Synthyoid this morning: the synthetic thyroid medication which we hope will decrease my fatigue and increase my quality of life.
Yesterday afternoon I had a long talk with a doctor about pain management and the auto-immune disease that is attacking my thyroid. They don’t know what it is but when my TPO (the anti-bodies my thyroid makes to defend itself) came back and they were only 25 times normal instead of 30-35 times I thought maybe…maybe they were winning. “No, oh no.” She said, “That thyroid is dead, the TSH will be going high, so let’s try synthyoid.”
It was 712 days from diagnosis including the day of diagnosis that I tried to get the medication to improve my health.
712 days.
The GP didn’t want to give Synthyoid at first because it has been linked to osteoporosis. I had to explain that Evergreen hospital report said that I don’t need to worry about those kind of diseases. The getting old kind.
Linda brought out the Tramacet, which is our ‘breakthrough’ medication. A breakthrough pain medication is something you only take when the pain is so great that you cannot function without it. Since I am unemployed, ‘function’ means an inability to move.
I take 3-4 a day. We were going away for 4 days, and ONLY had 40, and we didn’t know if that would be enough. Six months ago, 10 would last me for a month.
We talked about the need for a NEW ‘Breakthrough’ Pain medication, because this isn’t it. I am, every minute of the day in nerve and muscular pain to the point that it affects my thinking, my speech, my movement, tremors in my arms, my hands and induces seizures. That is ON the ‘breakthrough’ pain medication. The medication works, it is just my pain levels have doubled since April and we don’t know why; and without a GP or specialist to care, no one knows why. At the last GP, they had called the pain specialist we had, one who was more an expert in Fibro and he said that he didn’t know anything else to do. Nothing else to do: I was on three different pain medications, two of them synthetic opiates; I am taking 120-125% of the MAXIMUM recommended dose DAILY, sometimes more. I AM damaging my living. Plus I am taking a nerve blocker.
When I am in pain, extreme pain, as might hit me as much as 15 to 20 times a day, I will fall from whatever height without feeling it. I will fall out of a chair onto my face without my hand, in a rigor clench, moving from where they are pain-locked at my side. It is hard to breath, the pain makes it hard to breath, as sometimes the lungs, or the muscles of the lungs themselves are in pain; I make noises, like an animal in pain. If my lungs are locked then I mewl, or a groan, or a moan. At first, when I feel it coming down on me like an avalanche, a great thunder inside coming down the mountain and as it covers me I scream, and SCREAM, and SCREAM until I am buried underneath it, and then I can’t breath or scream at all.
I cannot see, I cannot move, I am not rational, I can with extreme effort catch a word or a phrase or a bit of conversation and hold it. If I am on the bed, I might see for a moment the Hello Kitty hanging scroll and think that if I can get the sheet around my neck I could hang myself. That if I could attach it to the bed somehow and use the electrical control I could strangle myself. Then the pain would end. But I try to move my arm, maybe I start to put some weight on it and the pain blacks me out, a thin membrane of consciousness with the fists and baseball bats of pain beating on me.
That is when a caregiver has to put a pill in my mouth, try to make sure I do not take it into my lungs and get some liquid into me/on me and get the pill down. Then the pain reduces so that I am a burning fire. Half insane, able to speak somewhat but also just as likely to grab a pair of scissors or a pen and try to jam in through my arm, to see if THAT pain, the pain I CAN control can distract me.
Linda can’t watch me during some of the times, I mewl. She leaves. She simply can’t watch. I asked her if she had a palliative plan (as I have authorized her to take action when I am in pain beyond bearing) and she said no. I don’t blame Linda, though to lie there, second after second waiting for ten minutes, for twenty, for thirty, for more, for anyone to come, as I have done more than once, it leaves a etching, a mark, scars. But then, we all, even me, the whole blog, the readers, have been shying away, not knowing what to say, averting the eyes to give me some dignity, slipping away for this post. DON’T LEAVE. THIS is my life. And this is the life of many, many people, and if we can talk about pregnancy, or having kids, or other things without always having to having the BIG ANSWER,
then we can talk about this, right? About pain without a limited end....or dying.
Because that is the problem, as the doctor explained, narcotics CAN be given but each person adapts to the level of the narcotic differently so a 5 mg pill this month may require a 10 mg pill in five months for the same effect. And with my pain doubling as it is, that would be maybe a 20 mg pill in four or five months, then a 40 mg pill in eight….do you start to understand. No one can go on these levels of pills without being physically addicted to them. And with my disease, no one knows if I am going to die this week due to heart failure (remember my heart just STOPPING or all chambers beating at once is the most common cause for death of people my age group, followed by just stopping breathing, like I did today a few times, enough to turn my fingers purple – “like a snow cone” I said when I could talk).
There is a drug with a patch called Fentynal which isn’t AS addictive but can be 80 times MORE powerful than morphine. The doctor thinks this would be a good fit for me…..but GP’s can’t prescribe it in Canada, or at least BC. So I am referred to a pain clinic at the hospital, though she warns me, it will take “several months.” In two months I will take more pain pills than I took the first 18 months….and I will be in more pain than I was when boxing. It is hard to write that, it is hard to think about that, looming over me. 
It is hard to have it alone in my head.
I should share with you some of the realities, which maybe I have already, that while I can remember how to speak like an adult, I am not an adult most of the time anymore. I am 10 or 12, sometimes five. And I am scared.
There are two rules we put in to help me survive. So that ANYONE interacting with me should understand:
1) Elizabeth is allowed to be selfish for survival. I don't have to be a good host, I don't have to make sure everyone has a drink. I don’t have to use all my energy getting back to people (though I keep trying). People forget this a LOT, because for posts, for blogs, for emails for minutes, I seem LIKE THEM. So they want to tell me adult problems, or engage in adult stuff and I am SUPPOSED to go, "No, I am no longer converting (converting oxygen correctly)" or “No, I don’t really understand, this makes me feel bad.” But I don’t. And people forget.
2) Elizabeth is almost certainly less old than she will appear to be. While I have the memory of the vocab I am not often Dr. McClung. Sometimes, occasionally, and it feels like flying, but I AM brain damaged, I have seizures daily, I have limited oxygen going to my brain and I am regressed. I am usually 10-12 and I am scared. I am scared of new people, I am scared of angry emails, I am scared of people when they want to unload and tell me how THEY are scared. And I go from scared to terrified because if an ADULT is scared, if an ADULT is telling ME, who needs help to breath and has to wait for them to move me, that they are scared, or have financial issues then I am terrified. What parent 'unloads' the financial, job worries, etc on the 10 year old? Not many, and the 10 year olds who have it happen to them probably aren’t doing very hot in school (acting out, retreating internally, etc). I can’t be the tough little girl who takes it all – not with a body and with pain like this. Not when I feel like people are beating me and no one can tell me WHY or WHAT I HAVE DONE to deserve this?
What is left: that person, the Beth, the 'Bethie' is someone who needs comfort. Someone who is confused, and who needs love and caring. 
That is also why the wishlist is full of manga; because it is what I, in THIS brain, can use….some times, to distract me from the pain, to survive the hours from when one adult comes and another adult comes. You see, this morning, I couldn’t take ANY pain pills because there was no drink, so I waited until an adult came (my caregiver) because she knows where the drinks are (how can I not know my kitchen? Well, have I gotten a drink in the last two days? Not this week.). I cannot blend a smoothie: not when my hand cannot even pick UP a strawberry after five tries as happened today, each time growing weaker. Yes, I am SURE there are better things, more medical things to put on the wish list. But since I CANNOT have narcotics, and I will explain why very soon, I put on the one pain killer I know which works for me, the one thing which might make a smile which releases endorphins and decreases pain: manga. Is it selfish? Yes. I don’t want to be in pain. I don’t want a play station, I don’t have a TV, I just want something (a manga) that I can drop five to eight times without damaging it and pick it up again and use it.
At the hospital I found out I was malnourished. Just like someone who was living on the street. Just like a sailor at sea in the old days. I was eating what Linda was but the energy to eat it, process it through my body and excrete it was being wasted because it wasn’t absorbing the nutrients. The amount of times my systems ‘crash’ (one of the three rules of my disease, beyond that I will always get weaker from the moment I wake up is that any system will crash at any time for no reason we can understand), is several a week. I have not had a week, I have not had three constant days of eat, sleep, rest, or even eat, sleep, work instead of eat, emergency, sleep, emergency, work, eat, sleep, emergency in at least the whole of ‘Otter’ which is June (it says that on the bottom: June - June is a book company...it is a confusing word)).
Every single nutrient that is not absorbed has its own disease, and of the three nutrients they ran, I am off in two of them. Having hair fall out is scary, what about having loose teeth in a few months because of scurvy that frightens the hell out of me, or rickets, or so many other diseases. And to find out WHY, WHY, WHY I need a GI specialist, and to get the GI specialist I need a GP and a referral. And even then after all the testing what if they say....it is part of the disease?
That there is absolutely nothing they can do. Because this is just part of autonomic failure of the peripherial systems regulating extraction in the intestines. The amount of Florastor has almost doubled, the only probiotic which seems to at least be holding the food through the system and give it a chance; a few months supply and we opened our last bottle a few days ago (it is here on the wishlist if you want to help).
Let me explain what this means in terms of medical costs; our food costs are now significantly higher because almost ANY raw fruit or veg will cause a complete system flush. When say complete, I am saying if you are eating strawberries, then after five hours of cramps and pain, you will see bites of strawberry, completely uncoated with any brown (also meaning NO NUTRIUTS were absorbed) coming out. So now, to solve that, we blend it, I drink my food. We blend strawberries, we blend ice cream and milk, and bananas and all the foods that have the vitamins I might need in hopes that we are slowing down the process. Because we don’t HAVE specialist advising us (actually though this was a nutritional specialist from VIHA who recommended it). It takes time. It takes more money. And then I need a pro-biotic to make sure it goes through the system at the correct speed and has the nutrients taken out. Florastor is the one that has been used for over 50 years. When you have Cipro for your UTI, and you have constant diarrhea, it is Florastor they recommend. If you want to donate for food or gatorade please go to ‘A girl’s got to fly’ as there is a link there. I drink about $140-160 of gatorade and powerade a month (that’s not a ‘insured item’ even though the Mayo Clinic recommends it). I have to drink caffine to simulate my heart, that is not covered either, nor are these extra food costs. Linda works to try and cover it all. Because she wants me to live.
So back to pain killers, and pain and suicide and talking about it. Because I WANT to talk about it. I have been so alone, so incredibly lonely I cry almost every day. I don’t NEED the ‘BIG ANSWER’ – what I need are people who are willing to risk saying maybe stupid things. People who try to find a way to relate, try to imagine and trying to figure out as we go along what the appropriate boundaries are to this all because they want to show me that is it OK to talk about death, dying and pain. That is what I need. That is what will make me less scared and less alone. I don’t WANT to die. I just don’t want to be in constant pain. Linda says I look like the girl in white sometimes,
all the life drained and beaten out of me, as I try to hug, to go through the motions hoping it helps her, hoping it helps me.
So the problem is that as the doctor said, ‘I have found that whatever they tell you the time is, it could be twice that.” Meaning she has had people who live five years after given two or even 18 months. And while that is sort of great, there is a BIG problem. The problem is that if I go onto narcotics, with the stepping up (remember, the doubling and quadrupling) there comes a point where it doesn’t go any higher – the pain isn’t reduced any more. And what if I still have a year to live. Well, they can’t TAKE me off that drug because I am physically dependant on it just as any addict would be, without me going into withdrawal – which even at this point would probably kill me (I am not on anything that could give me withdrawal). So I have a future where I CAN get pain control, or better pain control, if I can survive a few months without going insane but what if I live longer and my disease just increases my pain beyond what can be given to me….and I still have six months or a year of life left. A year left at a level of pure, unimaginable pain. It terrifies me. Right now, I have dreams where people are experimenting on me, are taking off my skin, are sawing off limbs and AS the pain medication wears off, then I simply wake up and lie there, unable to move, in pain, wondering if I have all my limbs. In pain until I can call or get the cup which has the sedative and pain killer for another round (or Linda helps me take it as she does during EVERY night). I have to be sedated because the pain killers are NOT enough.
So on the one hand, the future of living a better quality of life which I and Linda and others worked for two years started today. But the pain has caught up with us. As have other complications. And the futures that are in front of me, they terrify me. The terrify the child me who only understands, “IT HURTS!” and the adult me, who can see all the possibilities, who can map it out mentally: she is totally terrified. She wants that extra energy, yes, and maybe, as we talked to the GP, she said if the pain clinic would agree, my caregiver could have the narcotic for use once to three times a week – for the WORST times and THAT would not get me addicted. And that would prolong things right. And I could go to hawaii and laugh. And I could blog about the farmers market we went to today, and I will.
But first, I needed to talk about this. I needed you to understand that I am regularly in pain, maxed out on pain killers that are above the limit, and the GP’s know that, but what else IS THERE – and I am totally immobilized and moaning and I am so bad, so painful and horrific to see that Linda walks out. And if Linda walks out, then I think maybe a lot of you would too, I think maybe I would too. And she hasn’t done it often, but sometimes it is too much for her. To see what must be my body ripping itself apart again, again and again. Too much for her....JUST TO SEE IT.
What do you think it is like to live it?
So when I ask for a shotgun, it isn’t a cute joke anymore. And if we keep pretending it is, then I will simply be alone. My grandfather died humming, he died humming and that is how I want to die. And to read this, you will need to accept that I will die, and that it might be one of the more ugly deaths. “The last few days/weeks/months were bad.” People say. They can talk about marriage, and starting life and college and pregnancy and children so lets talk about this. I already know it can be bad; share your stories and let’s just talk about it. Adult and child Elizabeth are already terrified.
I did palliative care a little as a very young teen so I know what someone being in pain and swearing and screaming looks like. I am past that. I want to LIVE, even if it IS drinking my food. But after three days of terrible, terrible pain, it is hard to live. There is so little joy left. It is hard, even now to distract myself with shows, or art, to find joy when the pain pours down and over me, trickling into every part of me like rain.
Also I sweated a lot, whihc is sexy and good right? Sexy, like the commercials, and then I have a cold drink I slowly rub down my body or something. Only my care worker helping me with a shower was like, "My GOD did you sweat." and when I was trying to be sexy went, "Are you trying to drink that or drop it, I can't tell?"
WHUMP, I burn down everything to the left. “AHHH, why are you making noise like the band section practicing?” I shriek. “T-A-L-K softly” I said with the intensity of my eyes bulging out of sockets as I seem to try to be strangling the care worker with my eyeballs. I had to send someone out of the room because the PENCIL was ‘too loud’ on the paper. WHUMP, the wild dragon girl has arrived.
And then, when the patch kicked in, which it did so noticeably that over 3 minutes, I went from, “AHHHH, why are you so confusing when you talk!” to “Ohh, this is really nice Linda, I really appreciate how you have put these tastes together, that was very thoughtful.”
I am not sure where I can get the odd bonnet, or the amount of material – I guess I need sewing skills beyond mine. But I am good at eating flowers , which seems a requirement for all introspective angsty gals.
Yes, look at Postcard Project post and how 'Nothing Matters': so deep, and gothy.
Hey, we all need people to care about towels being brought in from the dryer.
But first off I want to find out exactly what kind of webbed panties she is wearing – I told someone yesterday, I would try anything once, twice really, except for some sexual positions (once is enough to know, ‘Yeah..um, no, that isn’t doing it at all!’). So you have a kicking weekend!
