Sunday, February 22, 2009

An update and a paradox

I’m blogging so I must be better? Um, no, not exactly. I am actually worse generally than when I blogged last time. The fever which comes and goes is a result of MSA out of control.Here is the paradox: if I am going to live, I need to stay in bed and make sure I get as much rest as possible. But if I am going to die, I need to make sure I get all my work done, my goodbye’s taken care of. Monday all my legal paperwork will be in legal form, no longer draft, just signing.

I am not in a hospital as I will explain later and I am seeking a palliative hospice. Yeah, due to a change, or info, we can applying for a palliative care program and hospice. I want this. If I could go into palliative care hospice, I wouldn’t be a patient, because there is no cure, so I get a name back. In a hospice the people who are used to the needs and limitations of palliative patients would assist me. And Linda would have a real break, she could recover. As it is now, I have surpassed the abilities of regular care workers. I need people who understand that I might not have strength to lift a drink, or transfer on my own. I might have many TIA’s (small strokes) a day, have memory regression or just want to lie there, might have demensia or keep trying, like this, to narrate. And the staff is used to that. Plus they will have counseling for both of us and REAL pain control (for me! No opium for Linda!). No one is worried about addiction anymore. People in the care-taker groups talk about the hospices as great places, places I could be safe AND have dignity.

Where am I medically today? My left eardrum has a significant rupture from a blood pressure spike from my aorta. The left side has a different blood pressure, much like each arm on me (not you!) has a different blood pressure. In this case, the high blood pressure (most likely diastolic) found a weak spot and exploded out. When I used a Q-tip on the tip on the side of my ear, it changed the shape of the eardrum, opening the rupture and letting the blood flow out. There is still blood behind the eardrum, and tomorrow I will need to see if it needs draining. Thus the dizziness. More problematically, if one side of the arteries going to my brain has a very high blood pressure, my chances for a massive stroke are dramatically increased. I also have intermittent fevers, dementia, blindness, and got food poisoning, and the seizures and pain are back. And I pass out a lot, and stop breathing a lot, and am unable to convert enough oxygen which increases my pain dramatically. BUT the heart murmur wasn't permanant damage, though I have increased erratics. Beyond that, things are stable.

While I would love to say I stayed in bed with some books and the victorian silver mirror sent to me by a reader, and Miko, I would say that happened, um...ONE of one day? The problem is oxygen. I can’t convert. I have a few minutes without oxygen, and any exertion, particularly talking, like, normal morning greetings will put me in oxygen deficit. Which is why yesterday I seemed to pass out every 20 minutes so 30 times or so. I go from portable pulse oxygen, to continuous, to mask. And I stop breathing a few times a day. So I have to have care-taking full time. If I want to live (I do!). So if I want to leave the apartment, I need to do it within a hour or two of waking while I can use the portable concentrator for my oxygen needs as soon I will need full time oxygen.

So why am I not in a hospital? Because hospitals are great about stabilizing conditions but pretty terrible about getting sleep. Anyone who has been with eight people in ICU or critical care know that a lot of machines make a lot of noise. My medications make me extremely noise sensitive. They are obsessed with getting 'better' in the way the majority of people do. So, if I needed fluids, and IV would be great, and I am waiting to go and get an IV port put into my arm if they have one for blood transfers too. Hospitals are a great place to ‘recover’ meaning to have the body heal by using the body’s automatic systems aided with medicines. Except, if you have hyper-somnia and need 11-13 hours of sleep and every minute you stay awake, your body’s automatic systems stop working, and medicines do the opposite of what they should do. It is not a good place. After I was awake for 10 hours from the food poisoning Raynaud’s covered the FRONT of my arms, my torso, my hands were black and I was on an oxygen mask re-breather (the oxygen to EVERY organ was being threatened). I couldn’t move, I was having TIA’s.

See, a particularly spice made it past my pro-biotics. Well since I have no flora or fauna anything not stopped by the pro-biotics means irritation and well, let’s say lots of time in the bathroom. And no absorbtion of food (so no energy). And the shutting down of systems like: sight, hearing, touch, oxygen conversion, blood pressure, and an increase of seizures. Like the one which seperated my shoulder today (tore a bunch of muscles). Plus it gave me partial paralysis; in my writing hand too! So I lie there with Miko guarding the world for me. I can’t see out of one eye. But I’m not dead yet.

And that is what is hitting me, as I lie there, reading when I can, books which are gifts from kind other people (and thank you SO much for that - big quality of life jump), thankful for the gifts from other people. All I want is a chance to be an other person, to be let loose on the street with a day to find a job, to support Linda during her disability, to get two jobs, to have hopes, to find every person seperated by disability and send them some books to read, some joy in their life. I would have plans that go on into the fall and following spring. And we plan the trip to the in-laws realizing we could go to Cuba for the cost of seeing my in-laws (maybe we should ALL meet in Cuba!). And I could work and realize now how fortunate I have it. Realize how much I need to give back. That’s what I dream about.

Does that mean there is a cure, a slowing, a stopping in my variation of Multiple System Atrophy? No, but damn if I’m not going to keep trying. We just got a whole six pack of news and Linda is trying to process it. She will be making a blog post soon (tomorrow, I think) and I recommend you read it because it will likely change our lives, hers and mine; one way or another. Right now, I need to lie as still as possible but I also need to have an electric wheelchair delivered and fitted, a full brain MRI done, the final legal signing of will, medical intent, living will, etc as well as other medical appointments. How that news will blow my life apart, I don't know yet.

But as I lie in pain waking in the night, what I think of, and what lashes me, if I can move is that there are people out there who I can still help. Even a postcard can be a help. And I seem out of time. Can I still send an email, a card, a letter? Sometimes it is a way to say goodbye, sometimes it is a way to say thank you. Because if it turns out there is a possibility of treatment, there will be a LOT of visits to Seattle; and help needed. There may be a lot of medical tests that would take months over here and I don’t have those months if they need that test to tell the Canadian medical system to give me different treatments. Do I want to live 3 years, or 5 years? Do you know anyone who doesn’t? Electric wheelchair, manual, in bed, I’ll take whatever life you’ve got! I’m not picky right now (Well, I’ll turn down zombie but that’s about it!). So there is a lot of pressure on me to get things DONE, while there is time.

Tomorrow Cheryl will leave with postcards, because I broke down in tears tonight at the thought that I left others as I promised I never would. I promised that I would always try to create a world where never again will anyone have to experience what I have experienced. I thought that was sexual abuse, rape, incest. Except, I for one, have found after two years that medical people and systems can be abusive, bullies, dehumanizing and feed off humiliation, then leave a person feeling it is all their fault for permanently feeling crap (chronic condition) if not worse, having a degenerative disease. And to know that there were people out there, who were waiting for my postcards, our postcards for it is the three of us who work on them (Linda is the one who made the muffins, Cheryl is the one who stole one) was too much to ignore. I sobbed at the abuse of the system, at the last two years and the thought that someone was feeling as bad as I was and nothing, not even a postcard would come for them. So we did some postcards.

So it is 6:00 am, time for me to go to sleep, as I am on the mask with black fingertips and purple hands. Tomorrow, Cheryl takes with her what I can do, a few packages in what two weeks of planning and the energy of a week used in a few mornings could do. And some postcards, always the postcards. People have given: to me, to Linda, to help us survive, both the mental and physical battle. Thank you.

That is what I was doing before when I was pulled from the computer, frozen, unable to move. Saying good-byes. When I go, be it in five days or five years I will be found doing. YES, I need to rest, and if I keep going as I am, my life expectancy is dramatically decreased. So I am going to rest, going to say “No” and lie in bed. Going to sleep. But I am never giving up; I will never leave a person ravaged and abused by the medical system alone if I can help it. I can’t always be there, but I can try to be there when I can. Just as others have shown me, by their example: the people who write me daily, who write me weekly, who care and contribute. I want to say it is in FAR excess of what I deserve...but who am I to take away another's choice. Sometimes, we are far more fortunate in our friends than we would deserve. I have been.


Lene Andersen said...

"Beyond that, things are stable". Oh sweetie, you make me laugh in the middle of the tears.

See, I'd argue that you have the friends you deserve. You're a wonderful person and an excellent friend. You deserve all the love coming towards you.

Woo! on being able to get palliative care! I hope it increases your quality of life.

sly civilian said...

i don't know what exactly that i am hoping for, but i am hoping for what's the very best for you.

yanub said...

Oh, the girl with the puppy is so cute! And the picture of the three of you is perfect!

Beth, the world is going to be much more empty with you gone, so whatever you can do to hang on for another day, week, year, do it! I know that you going into palliative care isn't giving up on life, but looking to live the life you have the best way you can.

I know what you mean about hospitals not letting you get any sleep. They are more hopping at any time of day or night than even your average nightclub.

FridaWrites said...

Sometimes it's indeed difficult to get rest in a hospital. Palliative care should be a lot more caring than the medical system has been but I hate for you to have to move away from your home.

My thoughts remain with you. I love looking at the postcards you've sent me, and at all the beautiful images you post on your blog.

Baba Yaga said...

Rest, woman!

You deserve richly. I don't know what the 5 cards now on my picture-rail cost you (all of you), but I know they are treasures. And came from a giving heart.

About the abuses of the medical system, I know. I'm sorry you know them too. I lost 10 alive-but-not-living years to medical bollocks. Years you could have used so much better. I'd donate them in a heartbeat, if that was allowed. (Picture tall skeleton in black robe, frowning at importunate imp, who is gesturing at two hour-glasses in a feverish manner.)

I have no idea what help anyone can possibly give with getting you a hospice place, but if we can, if I can - in some improbable way - help, sing out.

Stephanie said...

Hey Beth,

My fingers are crossed for you getting into that hospice! It sounds like the right thing for you and definitely for Linda, to get a break. And counseling for both of you! I can imagine that that would be useful.

I can't believe you had food poisoning on top of everything else. It seems like something you shouldn't have to deal with. How dare food do that to you, when you have your entire bodily functions working against you as well! I wish that hadn't happened. I love your line - "Beyond that, things are stable." Being AB, that doesn't sound at all stable to me; I guess I have no idea what non-AB people go through.

I do know that I've learned about compassion from you. I want to be a more giving, compassionate person as inspired by you, and that's manifesting itself in reality. So thank YOU for being as amazing as you are even dealing with what you are. Every new post you write inspires me to try harder to give to others.

Thank you, and still hoping for the best - Stephanie

Kathz said...

I sent you a postcard today - not a specially decorated one like the ones you have sent me but one that I hoep you enjoy.

Dear Beth, don't be afraid to rest or worry about what you haven't done. You are Superwoman to have done as much as you have. And you have brought light to so many people who love and care about you (and others) because they have read your blog.

Neil said...

Not Dead Yet. Still caring about others when you should be worried about yourself. Yeah, you're amazing.

Never give up; never surrender!

Love and Zen hugs,

cheryl g said...

I am really hoping we can get you into the palliative program. It gives you better pain management, access to counselling, and better care all around. The hospice respite facilities all seem far superior to the general care respite facilities. I want you to get the care you need.

“Beyond that things are stable.” I am hoping things get even more stable soon. I can wish/pray/hope you know…

I personally believe that hospital would kill you. The impact on your hyper-sensitivity and your body in general would be too much unless you were in the palliative wing.

You make a difference each time you reach out to someone who is lonely, hurting, and needs to know they are not alone. You have reached out to me in my times of need at huge costs to yourself and it has helped me so much. No one left behind means a lot to me too.

I like the picture of the 3 of us but I am going to sneak another muffin…

I understand your need to say good-byes though I wish it weren’t necessary. I will be here beside you helping you as best I can.

thea said...


The hospice does sound appealing, somewhere that you can actually perhaps get some rest, somewhere that will give you appropriate drugs...

I hope stuff sorts out so you can do it if it will help.

I've been away again and before that, not quite present, sorry, just lots of catch up reading today, but I am still reading and caring how things go for you guys.

Victor Kellar said...

Hosptital bad, hospice good ... you won't get any argument from me. I think the hospice is a great idea for both of you. Any place that sees you for who are, and truly understands what you need, can only be positive.

I don't know if you received my package, I hope it brought you even just a little smile More mail to come

SharonMV said...

Dear Beth,

I hope you can get into a good hospice with caring, understanding and well-trained people. I'm sorry that you must leave your home. You and Linda will be able to have time together to concentrate on each other

I want you to stay with us as long as you can, but with good care and your dignity intact.

You have done so much for others - fighting the system, through your blog the power & beauty of your words have touched many lives, the postcard project has lifted many a spirit.
So enough already! You deserve & need a rest - time for you to find & get the right care, time for you & Linda, time for Cheryl. The fact that you are doing what you need to do to stay here in this world, that is enough, more than enough.

You are more than a friend to me, Elizabeth, you are a sister of the heart. We will stay in touch, one way or another. Even if it is only the feeling of one hand reaching out through the darkness to hold another.


Nancy said...

The hospice sounds like it would provide really useful services, and it also sounds like a supportive community, which would be great. I'm sending lots of good thoughts and wishes your way!

Donna Lee said...

I'm crossing my fingers for the palliative care to come through. And although Linda might like some of that opium, it would be nice for them to be able to take away your pain and give her a chance to just BE with you.

Elizabeth McClung said...

I am only applying through a loophole, trying to get the medicos to understand that they can say I need pallitive care because I do NOT have a severely disabled but stable condition (the other option), thus I have a potentially terminal condition.

I would be using the pallative programs to get a) nursing at my home along with more home care and b) time like 3 or 4 days every few weeks in a hospice; trying it out. I am not going to move, and I am NOT accepted, but I am applying. As this seems the best option.

I'm very sorry I didn't make that clear, I wasn't at my best.

Joan K said...

I consider myself very fortunate to know you. You've made a difference in my life and the lives of many other people.

I hope you find better care. When my father was in hospice the care was wonderful, respectful and comforting. We were very grateful.

take care!


Birthe said...

Dear Elizabeth,
Palliative care sounds so good. Being able to stay at home sounds even better. I do hope you will succeed in being accepted.

I received a lovely postcard today, one you had sent to me through Lene. Thank you so much - you make me cry. You are such a wonderful woman. I just wish I lived closer to you so that I could help out.

Please get some rest and please don't overdo the writing.

wendryn said...

We're wishing for the best for you. *HUGS* to all three! The pictures are perfect. you've made more of a difference than you know...

Anna said...

Thanks for sharing have nothing intelligent to say. I hope you get what you need.

Raccoon said...

You forgot about the nurses coming in every 2 to 3 hours to wake you up to check your blood pressure or get blood for blood test or some other silly reason.

And the hospital food! Don't get me started on the hospital food!

I am eagerly anticipating Linda's post, and hoping for good news.

Wait, you haven't done all the legal signatures yet? Shame on you (says the person who has been meaning to sign stuff for the past 11 years)!

Veralidaine said...

I like the picture of Linda making muffins and Cheryl snagging one to munch as you do postcards together. I wish that could be your life forever.

Why turn down being a zombie? That might not be too bad-- you could walk... er... sort of... and you wouldn't need probiotics to digest your steady diet of brains.

Then again, if you became a zombie in a hospital in British Columbia, you might, from your descriptions of your doctors, have an awfully hard time finding ANY brains to eat! Dr. Atwell-Pope would barely be a light snack, if that. The only ones with enough brains to eat in the BC medical system are the patients, apparently...

SharonMV said...

So glad that you can stay at home & still receive some nursing & palliative care. I truly hope you will be accepted into a good program and will concentrate all my efforts of prayer, good thoughts & whatever else I can think of to that end. And a program where they know you & your needs. Then you (and Linda) would have more confidence if you have a bad period & need to go inpatient for a few days.

Time was, that I'd have to go into the hospital every couple of months or so to get treatment for bad respiratory infections. Never had to be in ICU thank goodness. Usually had to be in 4-6 days for IV antibiotics, fluids, other meds & breathing treatments. I kinda got used to it. Later, I was able to do the IV meds at home which was much less stressful.

We didn't go to the shelter today - so no kitty yet. Dennis had too many chores & errands & I was'nt feeling well. We're hoping to go Wed.


Elizabeth McClung said...

Lene: I am glad you got a laugh, I try deadpan but it doesn't work sometimes. And you are certainly a friend I don't deserve, a rising celebrity who will soon leave me for the shining lights? The problem is that it is all letters and committees, and people, it always comes down to a Robert or a Julie - we found that overseas when we spent weeks calling to find out WHAT the duty was on our wine - sometimes it was the cost of the wine, sometimes it was $10 a bottle, then it came down to what one woman who was out of the office thought. We waited, she thought $2 a bottle - we were fine with that. Not exactly the European way of exact regulations.

So I wait for the Robert of the medical side of the people treating me to decide if he should call the Carol or the Robert of the Pallative Program and see if this is something that can be included in an exception. For example, if you have MS, you can have medicinal pot, if you have ALS you can have it, if you have a rare disease, you can't, because it hasn't been lobbied and approved by the 'medical branch' - which means going and a Dr. Robert looking at the disease and realizing he's never seen one and is it painful, darned if he knows. So it takes 2 years in review. That is Canada. That is what we are trying to get, our medical person to talk to the pallative people on the basis that I am NOT stable, I AM degenerative and ANYTHING untreated eventually kills you, so even if they don't know about it exactly......

Sly Civilian: I'm for living, that seems good. But a better life than this, I have however not won the lottery, I have in the same day bleed from vagina, nose, mouth, ear and anus but until I bleed from the eyes too, I still have something to aim for, after that, I guess stigmata?

Yanub: I am trying to put in more dog pictures for those who like dogs too. I am back a bit from the brink, which means I only need to be checked on every 20 minutes to stop from being dead. Haha, improvement!

Hospitals are depersonalizing demanding places where you are never, ever supposed to say 'no' - you are alone when you need to be watched or help, and you are constantly interupted and drained when you need peace. ARG!

Frida: It would only be a few days at a time, I hope. I will look into which of the hospices are the best. Thanks, my hobby and allowence goes into getting Japanese art, usually from full time artists who don't sell commercially and putting it up - this blog is all Doujinshi art (artists who don't sell through stores). I don't know how else to give.

Baba Yaga: There should be another postcard coming to you - or came, another illuminated manuscript, haha, and you thought that was a limitation.

I think soon there is going to be two or three parts to my life: one which will be medical, which will have real costs, and real fundraising. The other will be to keep me alive so that I can participate in the medical and the third which is to try and fundraise and save and sell off things to have a few last dreams like Hawaii in the off season or seeing fireflies one last time.

I am sorry you lost 10 years in the medico system, what a frustration! What anger I have over my two years, I cannot imagine 10.

Stephanie: Yes, thanks for your wishes, the truth is that except for the blog I never really get to talk to anyone.

Well, it wasn't degenerating which meant I could stay at home under emergent care conditions rather than HAVE to go to a hospital and have them freak out. So that I had gotten stable was good.

I am glad that you want to help and give. I did too only I never knew where, I used to walk streets thinking, "Behind these walls, are people I could help? I could read to, I could do something!" - I should have been a caregiver or joined one of the volunteer networks like for sports as a volunteer for someone with disabilities who wants a companion to go to doctors appointments or to go to sports (different organizations). I had the desire, I just wasn't clued in. I did try twice to join the phone line people, and also big sisters.

Kathz: Thank you, I enjoy all the postcards. And I look forward to yours.

I don't think I have done enough, I think there is always more, because so many people are waiting, watching, thinking, 'oh, someone else will take care of it.' - I need to show them that even in need of help and depression, in pain and despair, in cries of help I make myself, I am still someone who gives a damn and while I might be hanging off a cliff, I am going to help anyone around me hanging on as well, not use them as stepping stones.

No one gets left behind. Not this time.

Neil: Exactly, NDY.

rachelcreative said...

I'm keeping my fingers crossed for the pallative care loophole to work out. So sorry you are feeling so much worse.

I did a drawing for you which should be with you very soon.

Get lots of rest to try and get through this busy week in the best form possible. Thinking about you.

Devi said...

I do hope you get whatever you need in terms of palliative care.

Please rest as much as you need; I for my part still know you're there and you care, and I care about you also, bad as I may be at showing it.

Kita said...

I'm in tears reading your post, Beth. How I wish that the whole dying thing would leave you alone. I wish that you were well. Heh, as my gran says 'if wishes were horses then beggars would ride'.
I honestly don't know what to say. I wish you the best.

Did you know that in Lakota Native Americans there is no word for 'goodbye'? Instead they use 'see you later' (toksa ake) because, even if one dies, they are never far away.

I hold you in my heart, Beth. That way you will always live.

Toksa ake!

JaneB said...

Hugs! And I hope it all works out to your benefit, whatever 'it' turns out to be.

Funchilde said...

E. It has been so long since I have checked in. I am so sorry that i lost the thread of your story, but glad that you haven't stopped sharing. warmest wishes, happy vibes and peace to you love.

funchilde aka dia

Miss Fairy Sparkle said...

Having seen a relative spend their last weeks in a hospice - I have seen a level of care that was compassionate, and helpful for all the family (their time in hospital had been poor - hospitals are for people who can recover despite the conditions ;) - says she who has a dread of being in one).
Less and less control is how your post comes across - and less predictability - as your body has shut downs and then some more. Hoping for all of you the best care solution just now - and as much energy as you need to be you.#
Laura xxxooo

SoulCrew said...

Hiya Beth....

I really do echo the thoughts and hopes of everyone here, that you do manage to get a place in the hospice, to help improve your quality of life somewhat. You, your presence, your character, your dear Linda and Cheryl are a wonderful gift and inspiration to us all here. I can understand a little, having lost years to abuse too. It feels like being robbed all over again. I cannot make sense of it, and maybe we are not supposed to, I don't know. I do believe that it can help us reach out to another, and rather than offer glib sympathy we can empathise and offer so much more than a pat sympathetic reply....
On another note, thank you so very much for your wonderful postcard that arrived today. It was a wonderful surprise and I was whooping and had a six mile smile on my face when I realised what it was. It gave me the energy to do a few little things I needed to do, before I headed back to my lovely pit of a bed :o)) . Thank you to all three of you for the effort and care you take putting the cards together, I do hope I can offer something in return to you all. Thank you so so much, I can't really put adequately into words what it meant to receive the felt like you listened and you cared, from thousands of miles away, whilst my biological famaily live a few minutes, and anything I need is met with snide comments and protests. Sometimes I wish they could spend five minutes in this body, ya know? I wish the docs who treat you so poorly could do that too....I am pretty sure they wouldn't last the five minutes, eh?

Anyway, enough of my rant, thank you again for the wonderful postcard covered in penguins!!!!

much love and peace to you all

SoulCrew said...

Excuse my useless spelling in the above post, I was enjoying the after effects of my lovely pain relief...just wanted to know if there is an email address to use for things such as an amazon gift card so you can get it quicker?

and thanks again, I love my postcard :o) Penguins and girls rule!!!!!


Michelle said...

Dear friend, I hope you find a good option that is right for you and Linda.

I got another postcard from you the other day. It is beautiful. As usual, your postcards come on the days I most need them.


TJ said...

I hope you get the care you need and that everything is as good as it can be for you, Elizabeth. I wish there were more that I could do for you. :(

Just keep rested and be careful with those Q-tips!

Lisa Moon said...

I find myself reading and not being able to come up with the words I would wish for, to not offer pop-psychology/Oprahisms, not wanting to sound flip and, as someone else said, glib.

I hope with all my heart that you will be granted the dignity of palliative care and I'm always thinking of you and Linda and Cheryl.

I guess our generation - raised on TV crap - always wants and expects the happy ending, the wonderfully tidy wrap-up of all the problems within the 60 minutes of showtime, including commercial breaks. When we grew up (if we did) what a disappointment to learn that life's problems certainly are rarely so tidy, rosy or Happy Days/Cosby Show/etc. perfect.

Still, I can't help but wish for you the miracle of something, anything which could restore to you a decent quality of life and the peace and dignity and support you all deserve.

I just realised I do believe in miracles, because I've not stopped waiting for one - or more.