Monday, February 06, 2012

Tale tell heart

I can’t get the heart to work. I know it doesn’t work, because that is what is causing the edema: 1) in the extremities until I exercise, which helps for 2-4 days and 2) in the torso due to autonomic heart failure. But when I sleep, the heart is steady, and now it isn’t anymore. I chose short days, 6 or 4 or 8 hour days instead of 14 hour days because I was constipated and I needed to get the impacting which would hospitalize me dealt with. I eat enough to give energy and sleep to give strength for the intestines and the six things I do to keep that going. I got that clear, but now my heart won’t work. I can’t sleep from the pain of my heart, it shakes the bed. I didn’t have reserves, so I made sure to eat at least twice a day. I didn’t have the edema dealt with so I exercised every 6-9 days for weeks, and the 72 hours of pain that came with it. I haven’t seen the sun or rolled around outside for fun for over a month. I don’t do puzzles, I don’t do anything except focus on what I need to do to survive. I have strong veins, I have the exercise, stomach and intestines are now almost regular, after a two year struggle. I can’t get thinner, or better, or fixed. I am in pain all the time to make sure the effects of painkillers don’t depress the lungs or cause greater constipation. And now, when it is all in balance, my heart it hurts SO much, I can’t go a second without the pain hurting me. When the heart goes, it all goes.

9 comments:

cheryl g said...

I am sorry there is so much pain. You have worked so hard to keep your body systems going. I wish your heart pain would be better. I hope you can go out into the sun.

I love you!

Anonymous said...

I'm not sure what to say except that I'm sorry you are in so much pain. I have chronic pain, though not at the levels you have: it's crap.

Love, solidarity and greetings from Cornwall, UK.

Kate

Lorna, Bob and Liam said...

Oh my gawd, it's like a macabre game of "Whack-A-Mole." First one system, get that under control,then another goes, get that under control, then another...

This game is ALSO not much fun. I wish more could be done for your pain without compromising your other systems.

We are so sorry about the pain.

All we can do is send our love...

Anonymous said...

Dear Liz:
I understand you perfectly, I have MSA myself, but not as advanced as yours (maybe), I have a question. So what if taking pain meds depresses your loungs or something? When I feel like that, I take the hole dossage. I´d rather be pain free and half alive than half dead with pain. Are you very afraid of dying? You can e mail me and we can talk if you want.
Tanya

Bonnie said...

I'm sorry to hear things are so bad. It's like a juggling act, only you're juggling 17 running chainsaws, so missing has really serious consequences.

I hope you get out for some air and sun. It has been sunny and fairly warm her in Ohio, and it's been really nice.

Sending good thoughts your way.

Elizabeth McClung said...

Tanya: yes, I find dying due to suffocation or intestinal rupture and sepsis to defeat the point of fighting to live. I am not particularly afraid of dying, but I am not planning to embrace the light (not that there is any light, more like walking down an corridor in a hotel) when I could have avoided it.

Raccoon said...

(((hug)))

This isn't sounding good.

I'll agree with Lorna: wanting more to be done for the pain, without compromising the other systems.

Why do people keep talking about "the light?" I don't remember any light…

Anonymous said...

I am in lockstep with Raccoon,Lorna and those who love you. You and Linda are in my prayers, love is forever..

Neil said...

My middle son has a "benign" atrial arrhythmia. Well the arrhythmia may be benign, but the pain isn't, and he has gone off to the local hospital at least six times in the last year, with signs and symptoms of a heart attack. The last time I went with him, the doctor asked me to leave so they could talk alone - yeah, sure, ask him about the party last night; the hostess was turning 16, she's a recovering alcoholic and drug user, the hotel she was working at let her have a room for the night to hold the party, and she told everyone "NO alcohol or drugs, or I call the police!"

So I watched his heart monitor in the hospital, but it wasn't as entertaining as yours, Beth. But at 18, he shouldn't be feeling like he does. It helped him drop out of school, and is making life miserable sometimes.

Son feels empathy for you, dear! And I can imagine maybe an eighth of what Linda goes through. And I salute you both.

Love and zen hugs,
Neil