Wednesday, August 17, 2011

Pain (Wit and I)

Due to an incident with Fran, lack of sleep, a care plan in flux (i.e. lots of holes to fall through), my pain medication, nerve medication all left the body. By the time I woke, from the last sleep I was to get in almost two days, the Fentanyl was already gone (I have the same dosage as end stage bone cancer patients). Once the appointment Linda picked me up for was over, we could apply, though by this time, I was curled up on the floor, my breathing stopping..then starting. I wanted to pass out but the pain kept pulling me back.

I haven’t ever experienced anything like that, which became like a fever of pain, and dragging myself from the hall to the bedside I can’t remember but I remember getting my torso on the bed and too weak to get my legs up. I felt like I imagined it would be like if I was on fire, and crawling, dragging yourself slowly, while burning bright flames towards a chance of lessening. I fell down on the floor, but the worker wouldn’t let me stay, and I was told to ‘try again’ and ‘Beth, Beth, Beth, you have to get in the bed.” Over and over, I heard.

The effort it took to get there and the implication that I wasn’t “trying”, and had to do MORE, it overwhelmed me along with the pain. Moaning sobs erupted from me as I clawed at the bed, trying to find a handhold. Preserving my mind and heart, the blood had been withdran from my eyes; I was blind, my hand clawing out and pulling back, as I could not feel what my hand was hitting, I only needed to know if it would hold me, or help me get those last two feet, dragging my legs up behind me. heard myself making the sound I had heard in Wit, the DVD watched only a short time before. "This is that state," I thought.

Only for me, no help came. There was no one to reassure me, or intervention. In Wit, the doctor is covering up his mistakes and instead of a Life of Quality, she is to be kept under, no control, conscious only when the pain breaks through (a morphine flow to put a person in a coma until they starve or die in other ways).

For me, the little minutes, literally 10 or 15 minutes of sleep I got before my diaphram failed and I was woken in choking: that allowed me the strength to turn my torso, and roll my head. It would be another 12 hours until the pain medication kicked in. But now I could at least rest, in between the fever hallucinations.

So, since the last post, I’ve been out of it, and now, though the pain of smashing my thumb with a hammer is flooding into my senses from most of my body, it is a relief to be down at levels enough to see out of one eye. And put words down. I have control of my brain once more.

Soon I will watch TV or something, until then I have to watch out as it has weakened me to the point I have to wake every few hours to rid myself of the air breathed into my stomach and intestines: through vomiting, or manipulation for oral or anal release of the air.

I’ll get better. I just wanted to spend the time to say I still go on, and thanks for being there. Oh, my right eye is losing focus (I am too weak for my autonomic system to focus my eye, so it is effectively blind. I type this with both eyes giving only darkness - thank goodness for all that touch typing over the years). I have passed out twice in the last couple minutes so I leave you for now.

A two minute AMV: Some views from Pain-world, accompanied by Sarah McLachlan


SharonMV said...

Dear Beth,
I'm so sorry that your meds ran out like that & that you were in such pain. What an awful ordeal. Since we are paying cash for my meds right now, (new insurance with huge deductible) I worry what will happen when my patch needs re-filling (I'm afraid it's an expensive medication). Already had to get only half of my oral pain med refilled.
I'm glad the medication is in your system now, hoping that it is working & that you will be able to watch something you like, something that engages your mind. And I hope you can get some restful sleep. I love you.


Elizabeth McClung said...

Sharon: I understand what you are going through somewhat. In order to pay rent, we delayed ordering the nerve pain blocker by 10 days, a week and a half made up by cutting back two medications, including the pain blockers by near half. What can and must be endured in order to survive is a cruel choice that I feel should not be denied.

Now that I am near death, or so they have decided, I was openly told that IVIG was delayed until considered unless because of the cost, and because I needed treatment more than once (like every 4-6 weeks).

"Do no harm" is certainly not the creed of those who make and sell these medications, nor it is the motto of those who decide who gets them (whether it be insurance or governments).

The cruelty of profit, or management or whatever they call it simply means that they might as well not show TV shows of those far away, but people in each person's home town who are suffering and need relief. Right now I would welcome a UN mission of relief to the entire west coast; as living in constant pain when medication is available is a form of deliberate cruelty, even if it is beaurocratic apathy which creates the situation.

For me, I am still in constant pain, as it must take several day to rebuilt up to the level needed in the blood, or I am suffering sudden withdrawl symptoms.

It is the helplessness that I cannot help you, or others or even myself when things like this happen. VIHA said that they can send a nurse to arrive within a day, maybe within a 4-6 hour window. Except I am on a 48 hour patch, and they only will come during business hours - one RN comes early, the next late and this will happen over and over again. No One should have suffer, particularly because they have a disease; we didn't ask for it, we didn't deserve it, and we don't deserve to be allowed to suffer like second class humans because of it.

If you need a place for cheaper lyrica, I can recommend one if you email me - perhaps you can order more for the same cash, as I used my skills as a researcher to find our pharmacy in the UK which uses the plants in Isreal as a supply, cutting costs in half (Ironically it IS the pharmacy we used in the UK, being down the street, I didn't know they had an internet business).

Love Beth

Noisyworld said...

OMG not again :(
It just makes me SO angry that you get treated in this way >:(

I'm getting frustrated enough battling the benefits system, but at least there is one here :/

Raccoon said...

Things are never as easy as they look when someone else is doing them.

What, is the assistant afraid to touch you, to help you into bed? Or is this one of the times where touching you causes extreme agony?

I'm still here, even if I can't get you some help...

Lorna, Bob and Liam said...

Oh, Beth, this is just... awful. And that word is just inadequate, as always.

Thanks for letting us know that in spite of it all, you are working, working, always working so hard at the mission of staying alive.

Virtual hugs,

Lorna, Bob and Liam

Neil said...

I'm speechless over the treatment you have - and haven't - received.

Tommy Douglas must be spinning in his grave.

For the Americans in the crowd: Tommy Douglas is known as the father of Medicare in Canada. He was the Premier of Saskatchewan, too. (And the grandfather of actor Kiefer Sutherland.)

I hope you are getting some relief, dear Beth.

Love and zen hugs,

SharonMV said...

Dear Beth,
I'm hoping that your pain relief is is increasing. It really is necessary to keep levels at a steady state for the meds to provide relief.
Yes, here the insurance companies do whatever they can to avoid paying for IVIG, My last insurance company cut off my IVIG twice, each time I had to fight to get it re-instated. Now my new insurance company is delaying my pre-authorization for no good reason, asking for paperwork & information they do not need. I should have had my infusion today, now it will probably be another week. And this is a HIPPA insurance policy, specifically for people who have pre-existing condition s & whose COBRA has run out. And it is n on-profit. Meanwhile, I will have no antibodies to fight off infections and the respiratory infection I have will worsen. It would cost the insurance company a lot more if I end up in the hospital. But I will go to the hospital only as a last resort (fortunately for them).

Thank you so much for the offer of a way to get cheaper Lyrica, but i take a different medication. I've found several agencies that help lower income people with prescription costs, but we are kind of in a bind as we do have insurance - we just have an extremely high deductible.

My sister, Elaine is here visiting to take care of me while Dennis is off visiting his Mom. She actually is taking care of me, fixing meals, doing some cleaning, understanding that I need time in bed, etc. I've never had this kind of care (or help for Dennis) from one of my sisters. It's very nice.

I feel like you are an honorary or adopted sister, a sister of the heart. A chosen and cherished sister. I wish I could come up there & help take care of my little sister, Beth. My little sister at times, at other times my mentor & teacher.
Love, Sharon

Elizabeth McClung said...

Raccoon: The workers are not allowed to lift '10lbs or more' in case they injure themselves. this worker didn't want me to stay on the floor, as I was not breathing consistantly, but she wouldn't assist me as even helping a limb might come over the 10lb rule.

As for the patches, workers used to be able to put them on - until beacon decided (I kid you not) that if workers licked or stuck all the patches on themselves, they could hurt themselves - so I cannot get assistance in case my worker is a self-destructive idiot, and now only an RN can assist me.

I survived, and next week, more interesting topics, like 'casting wheelchairs: why the wheelchairs chosen for actors on TV and Movies matter' (already have notes and such on that one.

Lene Andersen said...

Oh, honey... Saying "how awful" does not begin to come close to covering it, merely sounds like a platitude. I could retreat into anger at the idiot worker who wasn't helping you, but that's just hiding. All I can do is say that I'm here. I'm reading. I'm sending you love.