Saturday, July 11, 2009

Vulnerability

I have been in burn out for a long time (months); I recognize the signs because I have tried to support others who are or were burnt out. I made up five official stages so people could recognize how far they felt they were. But the truth is there are seven, it is just no one at seven lives very long. I am at stage seven.

During burn-out if you are daily abused from various sources, like I am, if you are in pain constantly, unending pain in every part of your body then after months of six, you enter stage seven. At seven, unlike leaving a situation, if you cannot, if you have tried to be ‘good’ and gotten even more abuse and pain then there is only insanity, death or both. I took a call earlier from my VIHA official nurse. She wanted to know the results from the hospital visit. When I told her I was terminal, she laughed and made a joke.

That is the sole nurse in charge of all of my care, my care plans, including if I get palliative care.
Today my Grandmother was interned. It hurt inside more than I anticipated. First because I did not remember what day it was: Linda came home in a suit and I asked her what client she had and she said she had come from the service. She had gone into able bodied mode, with no time for someone whose memory might only be a day or two at best, left without telling me, ‘stay up or be left behind’.

I had decided not to go, earlier, due to the hatred of that clan of four children; one of which had refused to be family recently (my father). But I still would have liked to know and was waiting to hear if the memorial was wheelchair accessible. Linda told me at the service another of the four children approached her, with tears, told her that she read my blog and loved me…..but that she couldn’t do ‘family’ now, and thus couldn’t see me, call me, contact me, email me (ah, yes, this ‘love’ I know about). Read my blog but couldn’t email me, as none of my family (all living here) have, or contacted me for the years since I came out.

I did not go because then the focus would not be on my grandmother, but on me, as one uncle said he would walk out of anything I attended. But she was MY grandmother too. My memories and my relationship with her too. She was a hard Matriarch, and had to be to feed four children from the 40’s onward, in the 50’s when her husband left her. One of the earliest stories my father told, or rather tried to fool me with at an early age of four or five was how he mowed the lawn for the promise of a new drink, “Adam’s Aid” and in the end, he was given a glass of water. There wasn’t a follow up of a treat, just that she had gotten him to do chores for water. Linda said that was Nanna all over. She was abrupt, and showed her love in unusual ways, like pretending that she had baked cookies for herself and was just giving some to you. She also would greet you with a note of chores in the mail box and a locked door, with the knowledge that once the chores were done, the door would open. They were things she was too short or weak to do, and she was too proud to have to ask around for help. She was tough and so her family is cold and tough and only had a memorial service because she had paid for it in advance.

But I wasn’t there. I saw my grandmother and talked to her shortly before she died; she was still full of a yearning for travel. Every time I see a National Geographic or a board game about obscure information, that is where you will be; reading every little card set up in a museum (it would take hours to do two rooms!). You were hard, and scared me a little as a child, but I love you. Goodbye.
I have spent the lasts few nights at home talking about not being able to take the pain anymore. I cannot cope with the levels of physical pain. And in level seven of burn out, if you only EVER get abusive and painful responses regardless if you are assertive, compliant, or say nothing at all, then eventually you believe that every single thing you do will only cause you more pain. And that was where I was, day after day of abusive phone calls. Nights of moans and sleep between hours of being awake praying for pain pills to work. We wonder now if that is the half digested stuff along with food that comes out in my feces….the pain pills.
Today I found out that my walk-in clinic, my so called GP, had cancelled the waiting list spot I had for the pain clinic two weeks ago. I had been waiting, gritting my teeth through each day for nothing. The recommendation to the specialist had been cancelled and now, until I get a new GP, there is no way to get another recommendation. There is just the pain.

I was also told my entire medical records were there, boxed and I was supposed to pick them up by day’s end. That while it was now a walk-in clinic that did specialist referrals, tests, MRI referrals and other things for every other person: for me, the only treatment I was allowed was pill renewals. That is it. Official sub-human. And this was decided when I wasn’t even there – maybe when my ER results had gone there? Gosh, even more complicated….dump her.

So when Linda came home, her AB speed and very abusive. She spend another day taking pains to correct me, to read my personal email over my shoulder and correcting my mistakes. So much did her mother verbally abuse her that perhaps she can’t stand the feeling of NOT being right anymore, so she shows me, since then, every little time I am wrong (and thus makes me feel that hated feeling she is trying to escape). She had been sent pictures of my grandmothers funeral already by my parents. I had not. It was a slap on the face, so I gave myself one. She corrected me, told me I did it wrong, so I gave another. It turned into a flurry of verbal and physical abuse, her holding and restraining me while shouting that she would do my worst fear because she felt out of control and needed to control….she MUST control, things must be in CONTROL!!!

And for me, after she scratched me, without remorse; I knew that even to share as I did the night before the ways during the day I had been dreaming, fantasizing of dying to which she told me to be quiet and count so she could sleep, that she did not WANT to hear me. She did not see me as a partner, as an equal. So I wanted to show her how that felt. How I felt when even the partner I thought I had used the information of burn-out to abuse me. It isn’t easy to make both arms bleed freely when you don’t have much more than an 1/8 th of an inch of nails or less but if you are insane and in a frenzy and don’t mind losing a nail, you can do it. I can. I did.

Then I started screaming, because the emotional pain inside was so much.

I am better now. She is better.
I asked her if she wanted to be with me now. 'Yes,' she said, 'I want to go to Hawaii with you and ....'

I cut her off. “No, now. Do you want the me of now? Are you proud of the me of now?”

She was confused.

I took her hand. “Linda Joy, do you take me as your wife?”

Finally, for the first time, she cried. She got down on one knee. “Elizabeth Katherine, do you take me as YOUR wife.”

“I do,” I said, “In sickness and in health.”

“Yes!” she said and buried her head in my lap. I stroked her hair..
“For better or for worse.” I said and she nodded yes and I held her, and slowly stoked her. If we had the now, if we were a couple, not just a caregiver/carer then we could sort the rest out. Maybe heal the wounds we gouged in each other, and ourselves.
The pain in the body goes on, and it will go on, until I can get a doctor to help me, or buy drugs on the street corner. The doctor who would work to find a solution was at the walk-in clinic, so that seems no more options. Cheryl is coming tomorrow and says she has some Manga, which right now is all I have for pain control. That and art books from Akadot. I like to look at the pictures. I like the warm feeling Manga brings.

I have been in pain for so long I can’t remember what it is like without it. Linda is going on respite for a week. I think she is burnt out as a carer. Or needs to recover from HER mother’s mind fuck in the prairies. I want to know when I get a respite, when I will stop thinking of pouring boiling water over me just to see what happens, if anything. Or throwing myself out of the fourth floor window to see if I get treatment for that, or if they tell me to see a GP. Or if I die. Cut it, smash it, break it: limbs, fingers, my body...what difference will it make. I want to live, but I am so tired of the pain. One person today, from VIHA, as I made a complaint against the RN who laughed at my being terminal, she said, “It sounds like you need someone who actually cares about your care.”

Yeah. Plus the head of the US specialist clinic said I needed better pain control then, and soon. That was five months ago.

22 comments:

Gaina said...

Everyone around you makes this seem like you're stuck in a really cheap horror movie - how can anyone be so utterly vile, and nurses of all people!?

I am pretty damn sure the treatment you are receiving from health care professionals is criminal negligence. I think a LARGE article in your local newspaper is about due! Also I have noticed that local communities/states seem to have their own online newspapers - get someone to contact them for you if you're unable to do it yourself.

In fact, you know what? I'd send the same article to EVERY electronic news paper/lifestyle magazine across North American. I have a friend in Denver who writes for one such e-magazine and I'd be more than happy to ask him to check out your blog and maybe write an article for you.

With regard to your pain meds: Your body is obviously not digesting them properly, so what about IV pain meds or taking them in liquid form? And if I - a lay person - can figure this out then what the HELL are the doctors being paid for!?

rachelcreative said...

Level seven I cannot imagine.

I'm sorry you weren't able to say goodbye to your grandma at the service. I hope you got to do so in your own way.

I'm glad you and Linda found each other again. But sorry you were both hurting.

I don't know what to say about living with the pain. I don't want to not acknowledge it but I don't have anything comforting or useful to say. I want you to be free from the pain and living your life not just trying to survive.

I sent you a short letter. I also sent some manga from amazon but forgot to leave a message on the gift bit so I hope it doesn't arrive anon and confuse you. Not sure it will have made it with Cheryl this time around.

Sorry if this is a bit disjointed. My brain is a bit muddled at the moment. But you're in my thoughts my friend.

cheryl g said...

I read this and I cry...

I am angry at the treatment (or lack of treatment) you receive from the many medical groups and their utter lack of compassion.

I hurt for you because I know the sort of pain that makes one insane with the agony and I would do anything to take yours away.

I sorrow for you because I love you and Linda and I hate how these trials hurt you both so much.

I pray for you because many times it feels like that is all I can do to help.

I am glad you and Linda have found each other again. I am glad the love is there for you both.

As an EMT and Park Ranger I have been the bearer of hard news to loved ones. We are all trained to tell these people, "I am sorry for your loss". Being part of your life I have learned how utterly inadequate that phrase is even when spoken with the utmost sincerity. I AM sorry for your losses and Linda's losses and I can only hope that saying that, acknowledging your pain is somehow helpful.

Neil said...

Hello dear:

My condolences on the loss of your grandmother. If you had been able to go to the funeral, I'd say you should have, just to refuse to submit to your family. If someone fears you than he respects the deceased, that's his problem.

Wait; they'll allow Linda to go to the funeral, but not you? I can only shake my head in wonderment.

And the clinic doesn't want you. You must not have been the right sort of sycophan- er, patient for them. Or you pissed them off by not dying as expected. So now you start all over again with a new GP? Assuming you can find one. Maybe have Linda call the College of physicians and ask for the names of some of the newest doctors; they might have a little less God complex than some who've been practicing for 30 years and still don't get it right.

As for the argument with Linda, disagreements and arguments aren't always a bad thing. I look at it as arguing WITH someone, as opposed to arguing AGAINST them. There's a positive outcome then. You're in a special relationship with death, though, and that makes it hard for both of you. Making up after the argument is always a GOOD thing!

"In sickness and in health..." Maybe he doctors need that kind of vow.

Love and zen hugs,
Neil

David said...

I've never met you, and we live a continent and an ocean apart from one another, on opposite ends of the earth, but I am giving you a hug right now.

Anonymous said...

Elizabeth, I am sorry to hear your Grandma has died. And I am sorry your situation has become even worse. How unbelievable the medical system does fail you again and again. I don’t know what good thing to happen to you I could realistically hope for, because I don’t know the system well enough and it hasn’t done much good for you anyway. It’s so not fair that you should have to fight and fight when it gets ever harder for you to do that and when the people who should be helping you take away your chances to get the care you need. I am glad you and Linda were able to give this promise to one another again, and I hope that somehow you both will manage to heal. My thoughts are with you. Sandra.

SharonMV said...

Again my heart breaks for you, my sweet Elizabeth. You should not have to endure such pain. I wish there was some way I could take it from you.

I understand some of the emotional pain you are going through. How being sick & in pain all the time affects your relationship with Linda. Dennis & I have had terrible fights when we are both so burnt out & overwhelmed. He, as provider & care taker has so much to deal with. I, as the one in pain & sick & the one with full medical knowledge of what all these diseases mean, how messed up my body really is and what it may mean for our future. And when I am over-emotional, cranky & irrational from the cognitive impairments 7 mood disorders caused by Lupus combined with the pain, fevers, weakness & myriad other symptoms, he perceives it as a "bad attitude" and insult to him. When we both hit the wall it can lead to fighting. I have been in so much emotional pain, that I have to put a pillow over my face to muffle the screaming. And what we face is so much less than what you & Linda do. We still have hope, there is still a chance that I'll get better. And we do have a future, even if it is a limited one.

I am so glad that you & Linda got through it and were able to express your love, to say those vows to each other. If love could take away all your pain, it would be gone. I know that love can help make it bearable. If love can help you hold on, I give you mine. Dennis will tell you it is a very strong, deep & enduring love.

It's very sad that you lost your grandmother. Sad that your family is so disfunctional and not accepting of you. I'm sorry that you were not able to go to the service & that you were not even kept informed & not allowed to share your grief even from a distance.

I spent the whole afternoon making flower stickers for you. It made me very happy. I hope thinking about this can give you a moment of happiness. There are stickers in the mail for you already, I don't know if they've arrived in time for Cheryl to bring them. Lots of kitty stickers. But I was only able to send a few flower stickers. Now I have more that I hope to send soon - maybe they will arrive 2 soons from now.

Sharon

Diane J Standiford said...

I agree with Gaina, your posts should be published, make you money, screw the uncare-carers, and maybe help the next guy. Linda can pummel a keyboard and find a publisher for your posts. Audacity Magazine online---I'm sending you something my partner made (well, why am I taking credit? SHE is sending it...I wish it was in the mail now,,,WAIT she says it went out yesterday.) I hope you like it. It isn't fun losing a healthy partner but love never has to be lost. FIGHT FOR LOVE always. Sometimes that is all there is.
May what we are sending lick your wounds.

wendryn said...

Wishing you and Linda the best, some peace, and more understanding. I don't know what else to say this time, but we are thinking about you & we're still here.

*hugs*

yanub said...

Gaina's idea that publicity might help get you the relief and care you deserve is a good one. What is there to lose by trying it?

Only now your grandmother was buried? I can't remember exactly...hasn't it been months now that she has been dead? I know they wanted to do whatever little projects they had already planned first, but this is ridiculous, and I understand better your frustration and rightful anger with them. That you were non-invited to the service amplifies their selfishness.

I am sorry you and Linda had a horrible fight, but it is good if it brought matters to a head and has allowed you both to forgive each other and renew your commitment. With all the horrible treatment you have both been getting from people who should be treating you with loving kindness, it is a wonder that you two didn't rip into each other--and you into yourself--earlier.

Oh, the family member who reads your blog and "loves" you but can't be bothered to so much as send you an e-greeting...what definition of love is it that requires no effort or sacrifice?

Raccoon said...

I'm not going to talk about pain, because I don't understand that level of pain.

I can't talk about the medical care that you're getting (hah!) because I would go into a rant, when you've heard it all before.

Your grandmother sounded pretty strong. Too bad that your biological family (not your real family, here online) aren't as strong. And one of them actually reads the blog?

Sigh.

Perhaps Linda was reacting to the memorial? Feeling overwhelmed, because the next time, the next memorial, is going to be someone she cares about a whole lot more than your grandmother?

And yes, I can see the need for control. Please try not be so harsh, with her or yourself.

I really like the way the two of you made up, reciting your vows...

Here is a thought that just popped into my head: I don't know how long you've been married, but isn't there some type of ceremony or something called "renewing the vows?"

Raccoon said...

And yes, dag nabbit, I cried again.

Elizabeth McClung said...

Thank you, I think I will write this up, a summation and see if online sources would like to see it - I can include the specialist letters.

I am sure the treatment is poor as well but the doctors seem to know that I won't be able to have the time to prosecute them.

Thank you for letting me know I am not alone and that everyone isn't scared away but what happens when pain and frustration clash with little habits, which on a normal day would mean nothing but boom and then we look at ourselves and remembered what mattered - US.

I will come back tomorrow to comment, or later today as it is tomorrow.

Lene Andersen said...

Oh, honey. So sorry you and Linda are having such a hard time. Not surprisingly, I guess - that trip to Linda's home was.. erm... regressive.. I'm so glad that you found a way through being stuck and amazed at how you manage to cut through and find each other.

Can you go to your grandmother's grave, just you and Linda? So you can say goodbye without all your alleged "family" interfering?

As for the medical system failing you yet again... I have no words. The doctor in the US can't refer/prescribe for you?

annette2 said...

I looked up VIHA for Drs accepting new patients and this one has been in practice a shrter and may be less burnt out
Name Tierney, Dr. Shauna Lee
Business Address 1* Health Point Care Centre
1454 Hillside Ave
Victoria, BC V8T2B7
Canada
Phone: 250-370-5637

Accepting new patients* Yes

You never know what might work
Annette

JaneB said...

Dear Beth, you probably don't remember me right now - I've been away for about ten days, from home and from the internet. I'm just catching up on your blog now.

I am so so sorry to come back and find you still racked and tormented and struggling.

I don't know what to say to this post that isn't about MY feelings, my anger, my impotence - except I care. I am here, reading, and I will listen as long as you want to share. I pray for you both, you all. I hope that means something.

Ms. Pet said...

Goddess! I just want you to get your girl to take a week off, and if possible come and visit me and then you can have an "attack," or something, and we can take you to a hospital out here and maybe get you better care. I mean, there is really, really a difference in regard to how they CARE about people out here, there really IS.

I don't know if something like this is possible, but I fucking hate those totally inhumane doctors out in BC and the whole medical system out there. It's the most uncaring, inhumane province I swear.

I mean jesus christ, you shouldn't have to fucking fight for doctors, that STAY with you, while your THIS sick. And who CARES if you challenge them or are grumpy, your SICK and dying, and so, why can't they just let it fly off their backs like emotionally mature people? Why the whole punish, punish, punish?

I swear I have never seen a culture, a peoples, who are sooo damn into punishing their vulnerable. No wonder it has the highest child poverty rate in the country. Fuckers!

I'm soooo sorry Elizabeth. I just wish you were well enough to get out of there and then get over here, and then get into a hospital. I'm not saying they could miraculously cure you. But I DO believe you'd get much, much better care, human kindness and the such.

Ms. Pet said...

And I agree with Gaina, it's TIME to go to the media. If you don't want to do it, then let me know, if your okay with all of us bombarding them with emails and links to your blog. Let them read just what kind of crappy province BC is. Go to the national papers, not just the local. Embarrass the fuck out of them, it's the only way you're going to get any decent care and palliative care. It's time to stop trying to play by the rules and go for broke.

If your "in" for this, and everyone else is, then post something on facebook, which I'll see better. Thanks for posting that you wrote on your blog, so I could come and check it out. *hugs*

Full Tilt said...

Hi Beth

Sorry about your grandmother and all of the nastiness from remaining family, docs and the fight between the two of you...Sometimes fighting is cathartic. Considering all you're going through, I hope you both get a chance to rest and enjoy some peace. Gaina is right about letting others know about your treatment via the press...

I'm sending a card to you. Take care.

FridaWrites said...

Wow, what a witch at VIHA. I wonder how she'd react to having a terminal illness. What you've experienced from your GP and others is patient abandonment--it's unethical to dismiss patients when they can't get care from others.

I am wondering if the liquid version of pain meds would absorb better--liquid hydrocodone. Terminal people need pain relief.

So sorry about you missing your grandmother's service--that really is painful.

Let us know if there's anything we can help with that you write up--if you want someone to review any drafts, I'm glad to help.

Cereus Sphinx said...

I'm so sorry that this all keeps happening to you. The Medical people sound like jerks of the worst order, but it's more likely they just don't GET it.

*hugs*

It' good to hear that you and Linda still love eachother. It gives me a bit of hope.

I can't talk about pain, but the only cure for burnout is to take care of yourself. Anything that makes you comfotable, or gives you joy - golmp on to it.

And kick those medical people's behinds if you have the energy - or get someone else to do it.

Stephanie said...

"Thinking of you in this difficult time" – that's on greeting cards right? I never know what else to say.