World Peace and painkillers, plus my junkie arms and firm medical breasts

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.

My ticket out of 'Pain World'

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A bad Fall: damage severe

Bad news and um, bad news. I am supposed to be in bed due to a bad fall lateral from my wheelchair yesterdaywhich gave me: a concussion, whiplash, a something rotator something in the shoulder, partial dislocation, torqued back, sprained wrist, ripped muscles on four ribs and between the ribs and slight sprained elbow. I kinda went sideways and smashed my head so hard that all I saw was this red flash (it as very odd, if I had seen ‘POW’ inside I would have thought it was a cartoon) at this point my shoulder slammed down, then other parts, most not arriving atop my head. But as my head was twisted (kinda like an owl!) and I couldn’t move, it turned out later to be very, very painful. Which is why one handed typing is slow and this blog post is short (9 hours later....).

HOWEVER…..the comments were so good on the last post, and I really appreciate the people who made them, I have responded to every person, so if you have any other observations/questions/things to share after those responses, that would be cool. I want to do a blog post on chromosome 17B-3-HSB and what a Canadian doctor in Palestine is doing (which isn’t really that nice!). But that is after lust, desire and tea. Gotta take time for tea! Nice hardcover book she is reading too.

Okay, finished ALL the comments on the previous post, on Intersex, please let me know, keep the dialogue going. Text me, write a comment?
I am high and low on pain killers because so sore and don’t want to lie down until this is done! So on to the important question: In school, where you the one who wrote on others with your markers? Wrote on yourself and were sent home having coloured your fingers multi-colours? Or the one who was written upon? What I found out is that in this picture, Linda went, “That’s me.” And I thought, “The crazy girl writing on people, I NEVER knew.” And she continued, “My friend F. used to write on me all the time.” - ahhh, she was the passive one written upon! For me, I was the wild one, but I couldn’t by nature and ethics force myself on others so I wrote on myself. Indeed, in high school one of the assignments I gave was to write a poem ON your body and see how the poem you write changes when the medium you write on changes from paper to your body. Great idea, and a great way for a student teacher to end up with the educational supervisor going, “You told them to do WHAT? No, you tell them to read 20 pages of Lord of the Flies and answer 10 questions, no writing on the body, non of this ‘poetry boxing matches’ you have….we can hear the screams and cheering all the way into the office! Just follow the syllabus!”

Oh, how to explain that 15 year old girl taking off her top in my class while popping gum going, "I call this: Cleavage"....uh....distract...."Would you like a cup of tea, Supervisor?"
Tomorrow Linda has promised to help me bath, oh boy, rub a dub dub – is there room for two of us on the tub bench? We shall see! Linda keeps wanting to put me to bed. Which would be great if we went in together but she wants me to be in bed just because my hands are so purple you wouldn’t believe or I am ill or I still have the whiplash and I pass out a lot (is 25 times a lot? I think it needs to be like 30 to count as a ‘a lot’ right?). Basically my plan of ‘Do what I want while Linda isn’t looking and then go, ‘oops was I not supposed to do that?’ isn’t working because during my cute, ‘oops was I not….’ I end up stop breating and faceplant (messes up the hair too!). I did however get some things to send to people sorted that I have been meaning to sort for weeks – yeah! Loss of time and faceplants – boo!

If you give a damn about this blog or about me, and oddly, I think of my readers as my friends, and that I have dozens of correspondences I enjoy. So the truth is, for a while now, we are just trying to get to the end of each week. And this week, the preparation to make the final move into hospital was made, and it was Linda’s FIRST choice. She HOPED I would not regain consciousness so she could transport me to hospital, even though there is little they can do there. That is how bad it is. I am not ill, I am not dying, I am visibly declining in health at a rate which would be weeks or months in days. We talk of Sakura-con, and we talk of where exactly to scatter ashes.

I am beyond the rim of the cliff. Okay. I fell. I didn't die, but I didn't get better either. I fell down and I am on a little ledge and I hope damn it that I can get back up and climb back up, but without significant rest, like week to weeks of bed rest, that is simply impossible. And yet, with the gravel and movers, I can't rest in bed. I have had a fever for a month straight because my autonomic system is failing. I cannot sleep to rest, or even lay there. No laptop, no TV. No use of one arm.

To give a SINGLE yet graphic example of what is needed so many times a week, those 'difficulties' with my intestines means that I am in a small room, with no air conditioning, and little to no natural lubrication after daily preparation, three times a week for about FOUR HOURS. I do that so when I leave, I do not have jaundice or toxins building in my system, though sometimes, I do, and the puss comes out my eyes. When I leave, I am exhausted and I have the physical after-effects of being forcible violated.

Yeah, that’s right, raped. I am being raped every week by this disease, LITERALLY. I bleed from my intestines, from my anus. That needs to heal, only it has little time before the next time. That is one of dozens of things I have to do in order to stay alive. Most weeks I bleed from my anus, from my nose, from my mouth, and last week from my ear, and puss from my eyes. I drink 2 liters a day of water, every day, to get out the toxins. I have been drinking gatorade for years and I hate it. I hate it and I drink it. Only lately, I have been too sick to eat. To weak to drink. Because I no longer have my ability to externally do what I need to survive, my body literally withers. You would not recognize one of my hands as a human hand anymore. It bleeds inside regularly. This isn't a metaphor, this is life. This is my life.

If you care, you should know because I am telling you now, I have no interest in being told to ‘go into that good night’ or ‘fly away’ but I want to go to Sakura-con, I want to see the cherry blossoms.
So, Help! HELP! Can anyone hear? Do you know what I do when for four hours I am having bits of my flesh in my colon ripped away so that I can live? When I am not screaming, or moaning, I try to read something to look forward to, I read manga. Manga is medicine. DVD’s are medicine. CHOICE is medicine. When I spend all my time, for as long as I can remember (the mid term memory problem, right?), just trying to survive, with nothing to look forward to because I stayed up and read all the new books/manga in order to stop bowel impacting and now I lay in bed and wonder how much blood is pooling around my anus. Is it staining the bed? And what I have to look forward to tomorrow? To having to do THIS. AGAIN.

That is why a $5, a $10 gift certificate matters, at Akadot, at Amazon, at Amazon.co.uk. Because then I have now what I did not have before. CHOICE. I can send a gift. I can get Linda a romance. I can get something for myself. I need a DVD player for the bathroom for when I cannot read, and for the times when the noise is so loud outside I cannot do anything. Linda found one for $50, and it is on the wish list. Will it make me happy? I think you misunderstand, it may make me LIVE longer, make it so that I LIVE the 28 days until a new neurologist appointment. LIVE until a new GP appointment. LIVE. Or if you want you can donate $50, and my first of 8 small bowls of pills costs $16, my second costs $8, my third costs $17 – three bowls of pills: some for my immune system, some for the free T4, and the rest is pain, pain, pain medication. And it helps. Kinda of like when you ask a new parent how they are sleeping and they look at you with the thousand yard stare and say, “You know, now and then.” Yeah, I get pain relief….now and then.

Never you mind, just keep thinking of me as the postcard project and as the indomitable Elizabeth with squirrels. Because you haven’t bothered to adjust your view of me with the disease. You don’t realize the level confusion, fear, pain that I live in every day. And that Linda and I work to get to the end of each week with me alive. That is why I haven’t returned your email. Yes, brilliant brain, but also a terrified child, becasue I am also someone whose only memory is pain as if someone had ripped the skin from my back with a whip of chain mail. If a friend, will you love ME as a friend, the ME here? No, not the me who started this blog, but the me who is here now, struggling, still fighting every day, but someone who is, in many, many ways, in need of understanding, and of soothing calm voices.

To say, I understand, no, to understand is to know I forget every few days, to know that everything you send gets a post it note, and so you leave messages of love for me. That is just one type of understanding. I might forget ever few days but still, to live, I have to go and do a dozen terrible things a day, every day, on and on for....ever. So for the child me, a little something more often makes the difference because that Beth made it this week (thank you W., you helped, all those weeks, you really, really helped). She is alive, and it seems that there is a ‘yes, yes, but show us, give us the posts, be there’ – I am here, because I have fought hell, and you want me to go back and fight hell again…..without a single thing to look forward to. This week I spoke to two people. This week I looked outside three times. This week I damaged almost every part of my left side and I have a cut on my face on the right. There are NO reserves. I am fighting to be here another year by being here another week. Now I am fighting another hour and day to be here another half week…that’s it.

Why the hell should I? I don’t know, I don’t know, I go crazy trying to tell people, “I care, I care” and having bits of love, tangible bits of love. No, no, not the gifts. I have sent out, in the last month, about 25-40 manga as gifts, so say Cheryl and Linda. I have received in the last month…..four? In the month before I sent out 18-24 manga as gifts, I received……(according to Cheryl and Linda)..none or one.

I know in my head that people care, I know that people send gift cards sometimes, and that is good. It makes it so I have something to look forward to, so that room isn’t just the room of despair.

I AM thankful for every bit of choice that allows me to claw an inch forward. That helps me wake up and do what needs to be done that day, because I have to look forward to deciding what CAN be done, as I have a choice, a gift certificate perhaps. Except I am too ill to be able to get out of bed for two days. I know every inch of that wall. When I sleep, when I am half awake I think that my hospital bed has chains across my legs, that it is like a walled crib, holding me down for the disease to eat another piece of me.

I want to read a romantic series that gets me aroused. Don’t you? Make me blush, find me some gentle sweet uke to grow from innocence. I read Butterfly, Flower A story where the daughter of a noble time honored family who has run into ruin is asked at her very first job interview (as she was trained to be a princess of sort), for an office job: “Are you still a virgin?” She is mortified, answers yes, gets the job and asks a co-worker, what was with that 'virgin' question. This produces a big laugh, as no one else got that questions and second, 'Who is a virgin these days?'

Her male boss, after he is so mean to her, she remembers is her male bodyguard/nanny, sworn to her. At work his is the manager from hell trying make her a perfect elite office manager, but one minutes out of work, and he won’t let her ride the train, but drives her home, calls her, ‘My lady,…” because she will always be of the noble line, and the young girl he promised to protect. Problem is, she falls for him. He doesn’t get it. She kisses him. He says he ‘understands.’ Whew, he isn’t as dense as she wondered. He continues, “you will one day meet someone suitable for you and need to practice your kissing on me, I am always here as your servant, my lady.” AHHHHHHH! What will it take for him to get a clue?

Ooku volumes 1 and 2 – put out in the deluxe edition, winner of the Eisner award is an Edo period love story. Japan has a plague which kills 75% of the men. Poor Samurai family sell their son’s seed to survive, prostituting their children. One man only has sex with poor women, women too poor for his ‘noble’ seed. In a world without honor, he decides to enter the service of the Ooku, which is 3000 males only, except for the female Shogun. There are two books so far, each book is a complete story, and together they are a complete story. Together they tell a story that inspires me to go on. It tells me that sometimes greatness is not having a title, or being famous, but in being there, simply being there for someone who is wounded in the soul. Like chicks huddling together, I can identify, knowing only the hands and hearts that show love, my memory is in who I shrink from, and who I lean against. It is a yaoi romance, it is a straight romance, it is a romance for all time. It is about the after-affects of rape, and the pain and suffering that come from it, as well as the cost of keeping ethics in a place where all people care about is position and power.

I read the whole series of Cynical Orange, now done, in nine volumes, the retelling of The Little Prince, as The Little Princess, a girl lost and the idea of appearance, and dependency.

These aren't manga tucked away, just something I read on the bus, this is something I read after I pray to God, “Please, let it be over, let it be over quickly.” I read it when the tears of pain are cleared from my eyes,because I don't want to smudge the pages. I grip the pages and try to read the text, because it helps to relax, to have something to look forward to. It makes it easier.

Before you tell me: The magic bullet (anal suppository) does not work for me. Senecot does not work; Milk of Magnesia does not work. It is not just the colon, it is the whole system. It is what I eat to slow the blood that comes down my intestines congealed to the sides of shit, the blood that runs down my intestines, pooling in the colon. It is the roughage I need so things move, yet same roughage that cuts me up (but less of that). It is the balance. A single carrot, can leave me bleeding for a week.

This is hell, but it works, and I live. I live and manga is what keeps me sane. And every person who gives a manga, there is a post it note with a name, and in the middle of the night your name is whispered, “Thank you, thank you, thank you.” Because you made 30 minutes something other than rocking and letting the tears fall.

Someone wanted me to put the medical stuff up at the top of my wish list. I didn’t understand. It IS.

To be somewhere else, to feel something else, to want to be in an adventure. Now, so disabled, I am a child again, emotionally, and in ability. I dream of things I want to do, of places I want to see. And books and manga and DVD’s and artbooks are the way I do that. They are the way I communicate to you, and the way I communicate to me.

Do you remember the wonder of a child, of exploring a place, a simple building that you had never gone in before? And inside is a wonder, you learn it is a pipe organ but for you it is a wonder, and there is a kind adult there who listens to you, who tells you about it, you maybe lets you play. These are the emotions I seek.

I cannot go outside, I cannot wander into buildings, and I am entirely dependant in my life on kind adults, and yet totally at the mercy of cruel ones. “Why do things have to be so hard?” Linda says, “I think about it and I don’t know, I don’t know why.” We just hang on, go on.
I find wonder in art books that I get from Japan, where the diversity of art is amazing – Pop, one of the great Artists in Japan is doing the entire fairy tale series, from Red Riding Hood to Little Mermaid – there is one on my wish list, as it is translated to English. What person with a serious degenerative disease does not understand Little Red Riding Hood and how hope is turned into despair?

Well, on to the slumber then, the mess of a slumber party is a lot more like THIS, with people waking at different times and snacks and crying and living. Not quite the lesbian lingerie parade. This is human.

I long for the spring, I long to read Ooku 3 or Butterfly 2, which Linda says are not soon but not far-far either. I long to get art books. And I long to give out the presents to my friends. Sure, I feel like the kid suck at home sick over summer break, when everyone is too busy to remember, because that is who I am. I still open myself up, wide open, in every blog post. I want to live another year. And I pay, I bleed in bleakness each day to do that, each hour of each day. And right now, well, it is too damn close. Losing is dying. My dreams are in red.

Let me just think of the spring, when the cool means sweating or not doesn’t matter, and I will have been able to have my hair cut and will be outside, reading a book for....pleasure. Linda reads to stay sane, for both of us; I read because if I scream I will wake Linda up, I read because I want to be at a ball, or talking to people, or working at an office, trying my best. I am so willing to join the author and fantasize.
But sometimes, I do break down sobbing when I have to come back here.