Sunday, January 17, 2010

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.

24 comments:

cheryl g said...

To answer the question you posed I am the one who wrote on myself. I think I would have enjoyed your teaching methods. Now on to serious matters…

I am regularly saddened and bothered that people you have regular dealings with seem unable to see or accept how much your disease has changed you. You have careworkers who see you every week and they don’t seem to be able to recognize the changes in your condition or they are unwilling to make accommodations.

It seems to be regularly forgotten that your chromic illness is not a stable disease but a degenerative disease. Your condition changes rapidly. Your energy levels, your pain levels, your cognitive abilities, your memory are all subject to rapid change. In the last few months I have noted an even more rapid decline. You are weaker, your energy levels drop faster, you struggle more with breathing and your pain is higher. If I can see it when I see you weekly why can’t your careworkers and why can’t the doctors?

It does show in your blogs as well. You are still a brilliant writer but you struggle more for words, you stumble more with spelling and your writing takes far longer at greater cost.

You have passed beyond the edge of the cliff. You need to be reminded and coaxed to eat and drink. You must do things that are painful and horrific daily just to live. You can’t forget to drink all the water and gatorade because to do so can be deadly for you. The pain medicine never gives relief it just brings about differing levels of bearability (if that is a word). The biggest help I have seen for you is the distraction that manga or dvds provides. They are definitely medicinal. Medicine isn’t just about preserving life, it is also about providing for some quality of life and that is the purpose manga and dvds serve for you. They aid you in bearing pain. They make a horrible necessity survivable. They are as important as the medication, wrist splints and wheelchairs.

I know you give gifts because it is you saying, “I care, you matter” You give gifts regardless of what you receive but it would be good if you received some in return. An amazon gift certificate is an ideal and perfect choice. If it helps carry you to spring it is a gift beyond price.

Lene Andersen said...

Oh no! That fall packed a punch (sorry - bad choice of words). Injuries suck - it's not like you don't have enough to worry about each day.

never wrote/was written on in school, it wasn't really a "thing" in Denmark, I think. I write on myself now - brief notes on my left hand to remember important things (usually written on Post-It notes, but who reads those?). You sound like the best teacher I never had - I guess getting kids excited about poetry was too threatening to the status quo? Idiot supervisors...

Thank you for sharing the reality of what getting through the day means to you - it helps me to understand better just a small corner of your life.

Annie said...

I care.

Anonymous said...

That's terrible news about your fall. All I can do is counter it with good news. The DVD player will be in your post box by the weekend.

Now everyone else: it is your job to send her DVDs to play in it.

yanub said...

Oh, no--hospital. OK, I want the address of the hospital, and I don't care that it will be foreign postage rate. If you are getting mail there, they will know you are loved, that people will ask questions, and treat you better than if you don't get mail. So. Address?

Yes, you need manga. But I must ask, do you need something to hold the manga, because I know that one-handed book reading is very tiresome and sometimes not even possible.

FridaWrites said...

Elizabeth, that's awful about your fall. I'm the one who's supposed to do crazy head spins. I know this is a difficult setback--that's a lot of damage from one fall, especially the concussion and all the other muscle ripping. I am grateful there wasn't more damage, especially with twisting your neck, but this is pretty damn bad and the pain must be horrible to deal with.

Yes, you need manga, and we'll send a few. It is extremely difficult psychologically and emotionally to be confined that much, more difficult than the physical disability in some ways (maybe not the pain, close call). I am reminded of the anchorites and fugitive slave Harriet Jacobs, living in a small attic space, at times like this. You are strong but this is more than you should be asked to do.

I have been in more than I want to be too and it's suddenly gone from okay to a big problem (i.e., I'm kind of cracking from it or maybe it's the steroid injection in my system right now).

I feel the pain in your crying out to us intensely--help is on the way. You are right that manga is the best pain relief--it doesn't take a lot of concentration to follow the story, but it is a good escape from what's going on physically.

My heart is with you even though I am not physically there.

Aviatrix said...

What an amazingly perfect image for this post you have presented with that first postcard. It is as if you have truly escaped into the literature and transformed yourself into manga, forever wide-eyed, cute, dressed in the most improbably ephemeral garments, and sometimes in momentary danger--just so you can be rescued--but never in pain. Animals of all kinds love you and come to lay their heads in your lap. Beautiful maidens--and very sexy not-so-maidens--tend to your every desire, and the weather is always perfect for your needs. Conflicts arise, but your cleverness and personal magic wins others to your side. You fight shoulder to shoulder with your allies and lovers to vanquish all evil, and rescue others from peril.

It's such a wonderful world. No wonder we forget to remember that you don't really live there.

FridaWrites said...

Yay! Thank you, anonymous. I have two DVDs I will send her right off on Tuesday. :)

FridaWrites said...

Oh, and I didn't write on myself but my sister did that. I was all inky anyway because I am left handed.

Yvette said...

Elizabeth, my friend. I really wanted to you to have a book because I imagined that if I were suffering a lot, that distraction would be at least as important as medication.

I really hope you can recover from your fall. It sounds very, very painful. Those injuries would be painful to anyone. And is it a good thing you're going to the hospital? Do they understand everything there? Will you have internet and can you still get letters?

To answer your question, I was the weirdo who wrote on herself, usually on her forearms or on the palms of her hands. In the summer, in shorts, I'd write on my thighs.

I think of you often.

SharonMV said...

Dear Beth,
I love you. I only understand from my own experiences, the edge, the corners of what you go through. It's true, when I'm honest I must admit that I've suffered a lot, that some days are very hard, and I know what you've felt, the pain, the sickness, the loneliness, the fear - must be so much more. And yet you are able to write about it, to get it all into words so that even the well & able bodied can see glimmerings of the truth, and sometimes even begin to understand. I do know that the battles never end - I have said, like Linda "why does everything have to be so hard".

I'm so sorry that people don't acknowledge how sick you are, how you & your life have changed.The truth is some people can't (even those who care about you). It's beyond their experience, they're in staunch denial, or they simply don't want to think about you being so sick & in pain because it hurts them. It hurts some people because they do care. Some can't stand the fear, either fear for you, or fear for themselves. It doesn't occur to them how much it hurts you not to recognized as you are now, not to have your experiences, sufferings, life & even your identity validated.

During a recent call from my sister, I was telling her about the latest saga of my insurance co. trying to cut off coverage for my IVIG. At some point she lamented" oh, why does it have to be so expensive". I'm sure it's due in part to drug companies wanting to make a large profit, but being a blood plasma product, it is costly to make. And it's just the way things are & I need it. I could tell by her tone that she was getting upset (and therefore I'm supposed to comfort her about my situation - an option which I declined to take by saying nothing). Then she rallied and said "well that's what you need to feel better & we want you to feel better". Frankly, I'm not so concerned about how I "feel". Most days I feel like crap & am in pain & sick. But what's important to me is being able to function & do things (even if I'm taking a whole bunch of meds). The days I'm too weak to do anything,the times when I'm alone day after day - those are the days that get to me. And I'd rather not have my life cut short by more diseases & complications. So I said "I really just need it (IVIG) to live". Just in a matter of fact way.

It's hard when friends & family show no understanding & are even unwilling to acknowledge what you're going through. Let alone how brave you are, how strong, that you are a hero on the hero's journey. I got a note from my cousin, Margie, after my Aunt, her Mom had passed away. Charleen (my sister) had gone to the funeral & had sent flowers from us. Margie wrote that Charleen had told her about the medical problems I'd been dealing with and she a wrote about how I was so strong & courageous. It made me cry. No one in my family had ever said anything like that to me. Or even acknowledged that my illnesses are so serious. Later she called and said that she wanted to get to know me, and to come visit me.
You need more people like my cousin Margie.

Love, Sharon

PS - please try the "R" word again. so sorry about your fall & injuries.

rachelcreative said...

Oh ouch the fall sounds like bad news indeed. Just what you need on top of everything you are already having to deal with.

I know a girl has to fly but face planting at the end in a twisted up heap is not the right kind of flying!

I'm glad you asked for (and have now got on order thanks to some kind soul) a portable DVD for the bathroom. I had wondered about that being a good idea for when you can't focus on manga. Hope it helps.

I know it's not the same but I couldn't cope at the moment without my Celevac to help move things along. Even then I've been sat in the bathroom for ages with pain before, during and after, thinking how wearing it must be for you every day to experience what you do with your own bowels.

So easy for these things to grind you (one) down. Escapism and stories to concentrate on seem good medicine to me.

By the way I've just discovered Battlestar Galactica (asked for mini series & season 1 for xmas) which I'm watching with hubbie and it's really rather good. Thought I'd mention it in case you've not tried it. I don't really do sci-fi much but quite enjoying it.

Hope you can make it to bed and get some rest and that some bits of you heal a bit. And that you get some manga and DVD's to help with the pain.

wendryn said...

I don't think I was either the writer or the written on. I wasn't in school with a lot of other people, though, so it was something of a moot point. I love the poetry-on-the-body idea!

I'm sorry I can't provide as much support as I was - the money situation is rather unexpected. I sent a little today and will send a little when we have extra. I wrote the email last night and read this this morning - I wish I could help more!

I'm sorry to hear that you fell and the damage was so bad.

I know you are not the same person who started the blog. You spend hours on postcards, trying to match them and the stamps and stickers to people. You use up your energy responding to emails. YOu push yourself incredibly hard to make sure other people are ok. I really hope other people listen to this and understand what you do, what you need.

You matter. You matter to a lot of us. You are a very important person.

*hugs*

imfunny2 said...

I don't lurk or post here as much as I'd like - - but all I can say is:
Falls suck, their effects suck and I'm so sorry it happened.

And, I know you know this:

Force every moment, every second of good you can...it does help to have something good to look forward to...
and I wish the carers didn't seem to carry the subtext of "Why is she worse?"

Singularly unhelpful, isn't it.

JaneB said...

Elizabth, I love you. You now, you whenever. Your bright spirit and your drive to action, your foolish stubborn determination to drive yourself to the impossible (I can imagine ways in which you came out of that chair which were... very you. And not sensible). Selfishly, I hope you stay here for a long time, to report on the catgirls at Sakura-con, to tell us why cherry blossom is not just a promise of sweet fruit, to continue to post bulletins from the cliff. But when I read those bulletins, and wince away from imagining your suffering and loneliness and fear, I realise just how selfish that hope is. I wish you more good moments, safe places in a book or a dream, loving hugs and naughty shower-games and a magical food that soothes instead of tearing. Oh my teacher, my dear teacher, I wish you rest, and company and comfort on the ledge.

And I wrote on myself, mostly under my sleeves, and pretended to myself that my invisble but real friends had done it, or that the marks showed that I was only in school to learn about the barbaric ways of the tribe, as an observer, that they couldn't get to me because I wasn't them. And also I wrote on myself when my pens were new and irresistable and just had to be used! Ah, the smell of a new marker pen...

Elizabeth McClung said...

Dear Anon: Thank you for the DVD player, it will help with bathroom problems, on the road and bed day issues. Also IT IS REGION FREE - so if anyone from the UK were to send say, The Fixer series 2, or Ashes to Ashes series 2 or Messiah series 5, just mentioning, Linda found a region free portable DVD player - brill and THANK YOU!

Frida: Um, no, or no, or um, there is something wrong here when the person who is unemployed, in pain, unable to move, is losing their house, and on food stamps is the one who is helping me with pain control. I am not saying I don't know exactly why you are doing it, the same reason I, who have no job, and now no health for one, no income and severe pain and mental issues just used three days to do 60 postcards, and then sent another eight packages of gifts and such too. Because Linda and others give me a small amount which I use for gifts - because giving is a choice too.

I put some DVD's on the wish list. If you get a third party DVD and it doesn't come off the wish list, can you please tell me or email me so I can remove it else I get 5 copies of Dexter. That one just seemed like such a deal at $15. So is Heroes Season 3 on sale at $24.99 (have to find something like earplugs to add for free shipping). And Di Vinci's Inquest is about Canadian Law and Order, where the Inquest makes the Cornorers office the one to investigate for the dead and the public good. Any witness called - works with police and public, a sort of law and order, CSI and Life all together with social overtones. Great show but definately get from a second party at $30 or so rather than $50 from Amazon. Sadly, they never drop that much in price.

I have a fever again, doing the postcards for three days did that. And the noise where they are 'throwing gravel' whatever that is but the earth shakes like an earthquake.

Raccoon said...

Cheryl, you forgot that her speech patterns have changed, too.

Beth, that's not a good way to get out of your wheelchair. Don't do it that way anymore.

And, yeah. Practice that nasty "R" word some.

I'm still here.

SharonMV said...

Dear Beth,
Sorry to hear that the fever is back again (probably never left). It must be awful to have a fever with your heat intolerance & inability to sweat. Not having a way to fight it besides the ice packs. Do fever reducing meds help at all? You probably can't take tylenol (or generic) if it's already in your pain medication. Hope you are managing to get some sleep & abatement from the noise.

Had my infusion today. It went pretty well. The nurse couldn't come until one PM, so I was hooked up till almost 8:30.

I forgot to mention in my previous comment how much I liked the pictures you chose for this blog. Some very lovely & poignant ones.

Love,
Sharon

Wendy T in SK said...

You matter, Elizabeth, and your suffering matters, and the suffering of your loved ones matters. It's beyond comprehension that others (careworkers, etc) couldn't see the degeneration you're experiencing. I guess they choose not to see it for whatever reason.
Thank you for putting into words (very powerful words) the struggles you are experiencing. It might seem like a weird thing to thank you for, but it's good that those words and your experiences are out in the world.

e said...

Hi Beth,

Your fall is scary...as Racoon said, please don't do that...A package, photos and a card are on their way to you as of today. Amazon is great at getting stuff out the door although I'm not sure how long it will actually take getting to you.

Cheers,

E

Elizabeth McClung said...

won't do that, yeah, oh god, it is so hard to breathe. Okay, don't feel good then push it, that's a good note to remember, oh, turns out the ribs didn't heal, as the opium runs out. Damn. Oh, what was the swelling from Cheryl? Linda will come, right, oh, got the job done, the posts up. haha, this was the day off. oh, good thing I dn'a have to have cheryl give me the look. hyiooof oh right siddddde, r is that left, the buwrn, kjg auntie?

Kita said...

Forgive me Beth for not posting as much as I should. I have been reading but it seems I have turned into a lurker. Forgive my silences.
The fall you had sounds really nasty. Rest, my sister.

Much love

Denise said...

I drew on myself: my hands, my arms, my knees, my feets. I love the idea of writing poetry on oneself & may have to try it.

I wish I could do more to help out. I do my best to write back. Your correspondence really does light up my day.

Much love, much sympathy from me. Reality sucks (especially brutal digestive realities, because that goes straight into the lizard-brain), but meatspace is where we breathe. :-/

Eli said...

I randomly stumbled on your blog today, and just wanted to express my appreciation. I was diagnosed with a chronic illness last year, and your writings gave me... hope is I suppose the best word.

Incidentally I draw a crazy webcomic with lesbian space aliens. I could only wish that it might give you a few smiles. Take care.