Little Posts: 'Today better than yesterday'

Time flies when indisposed. I’ve been overwhelmed by balancing the appointments and the health needed to do them.

Until my body started to fail, then it was all I could do to endure.

The worker was unable to hear my whispered calls for help, from my weak lungs. They set the fan to blow on me as I struggled to speak, to move, to do anything in my paralyzed body to let them know ‘I’m here, help!”

Time flows fast around the working eye, and I hear her shut the out door. I still couldn’t move anything except my eyelid. But I could feel the lung deterioration, progressing into diaphragm breakdown.

I held on. I endured. For an hour or more there was an explosion from my limbs and torso of nerve pain, perhaps it is what locked up the diaphragm, or sprained it.

To lie there, unable to move, with Linda having a work day, not home for three hours, that is just something to bear. But when the pain came, unable to moan, unable to move, and too terrified to close that eye and let go, then it was a fight. I would not fall silent into that dark night. I told myself that I must hold on. I hallucinated, thinking I was in a war, wounded, left behind.

I prayed. Mostly thank you’s for the people known, for the time I’ve been able to spend with Linda, and others. My life seemed very short now. All my plans and hopes of what to read or see, or emails I hoped to write or read seemed so far away. I thought about it all, “Darn it” I thought, and I sipped what air I could.

I did it. I held on until Linda came home, my lips moving over and over, ‘help me’, ‘help me.’

She leaned over and and I could see part of her face with my eye. She said, “Looks like you’ve had a TIA” (TIA is a mini stoke). I couldn’t see a way out or through this. I kept saying, ‘I love you’ until I was sure she had read my lips.

I didn’t want her ever doubting what I was most thankful for, or what mattered. I couldn't see a way out of this, a way back to the diminished life I am thankful to have.

Linda promised to watch over me and my breathing. So I risked sleeping, but how much I did of that, and how much was hallucinations due to the pain, and lack of oxygen is hard to tell. Linda noted that the breathing was shorter, shorter and erratic while I slept. So weak I could not drink. So Linda used a straw to suck up Gatorade then hold it with her finger on top before dripping the drops into my mouth. I needed the calories to try and get some basic function. Late hours but I still couldn’t move, drifting in and out. The bed was raised so I could swallow the mouthful of Gatorade, then lowered so I could breathe. My stomach was bloated from air swallowed in sleep. This air was squeezing my lungs, stopping them from inhaling.

I was able, then, to take the breakthrough pain pill with Linda putting it in my mouth, and dripping in Gatorade. My jawbone snapped out of the hinges by my ear, as it had for the last 10 hours. The pain had made most muscles locked in extreme tension.

Take your arm, make a fist and squeeze as hard as you can. Feel that tension in your muscle? Remember what a leg cramp feels like. Imagine a cramp going on for an hour. Impossible? Not if it is paralyzed that way, locked with muscles in full contraction for nine hours.

There are things we think are unbearable until they are endured. 'Longsuffering' the bible calls it. Thank goodness the Fentynal had been increased last week.

As the calories grew, things got a bit better, which also meant worse. The muscles started to drop, to release. My body relaxed, and it was like I was being pressed in medieval days, a board on me, with stones added. The only muscles that moved were the ones which twitched uncontrollably from the lactic acid which had built up.

I was faint, dizzy, but I could move my head, and I was starting to get parts of my body back. Linda put my legs, knees up, then swung me so they were off the bed. A tilt of the torso and I fell forward, Linda catching me, as we stagger, my one leg under control, to a cool room.

My hands and lips purple from lack of oxygen, but I started to be able to breath, a little deeper as I cooled down and every bit of calories. It took another three hours. Linda had been caring for four hours. I never would have gotten that care in a care home. But I slowly started to get better.

I couldn’t control my arms well, they would twitch and go in and out of spasm from the hours of muscle tension. I let my head loll on the headrest.

Linda put what we did down in the ‘solutions’ book, because we know neither why it work nor why my lungs declined so severely and so quickly. But it worked, and we hope if that happens, it will work again.

Please, never let it happen again.

I will start blogging regular as I can get out of bed. I’ll show pictures and write of Sakura-con and the trip as I have the ability and strength, if that is okay. I thought I ‘had’ to do the BIG Sakura-con blog, but now I’ll do ‘little posts’.

I worked today a little on my new birthday goal: some new disabled parking spaces in Victoria. There is no rule in Victoria, BC for blue badge spaces so no one makes them. The workers call for me. I talk to owners. I have more owners to go, then the council, and try to win over one parking spot at a time. Right now, there are several thousand street parking spots, and 28 disabled spots in Victoria. Every parking spot in every lot is a gift for all.

But that is another ‘small post’. I’m glad to here. Here is good, today better than yesterday.

"Not Dead!": say it with me!

I’m not dead.

I’m NOT DEAD!

I figure if I keep saying this over and over sort of like “positive thinking” good things will happen. First, I would like the vultures to stop circling the apartment, that is a REAL killjoy, okay. Dudes, I understand the whole ‘circle of life’ thing, but PLEASE, just CHILL!

Second, um, I would like my heart to start beating on a regular basis. I should say the heart is an oft under-appreciated organ and that we expect it to do its job day after day without recognition. And when it is in a pout, like it is now, and decides to NOT beat regularly for say, multiple hours a day, I can understand, I can. I would have a “Elizabeth’s Heart” parade if I could for it, if that would get it beating at a regular beat and stop my hands being purple first thing in the morning and such.

I guess there is a third but I just got a blue screen which wiped out about 1000 words so this will be an far shorter entry than I planned because it seems that both my computer AND my body and not doing to well, lots of blue screens.

Oh yeah, I remember number three which was to try and breath regularly, sort of like a healthy diet, except I don’t. And when your partner is scrambling around for the X’th time to find the bag the breathes for you (ambi-bag), and you go blind and stay that way and have to sleep hoping that was because your body assumed you were dying and pulled the blood out of your eyes. Well, it kinda sucks.

And while this is blog about disability and dying from a variant of MSA among other diseases, while I use the word 'dying' I tend to put that off a ways. Recently it has been made more evident that I am dying like in, rapidly thinning, bruising, wounds that won’t heal and just looking like someone in a Hallmark TV-show on dying. But I’ve still always felt, in one of my episodes or when I am having a TIA or something that while I COULD die, if I don’t, I’m coming back!

Well, truth be told, right now, I am scared, very scared. Because for the last few days I don’t feel that way, I feel 24/7 that I am circling the drain and it scares me. My heart hurts 8 hours a day and I wake up from sleep with purple fingers. I strain to breath, I strain to speak. After a few hours of being awake my voice is a husky rasp because I don’t have the strength in the vocal cords or my lungs. I can hardly be understood. It scares me. Having that for one day, that was scary. Waking up the second, more than worrying. And starting the third day it is crap scary. Having chest pains and stopping breathing on those days too, and yeah, I don’t know what to do. I don’t know what trick there if for this. And I’ve only been able to eat about 300 calories in the last couple days (combined), which I think is under ‘not a good sign.’ I'm trying to find a way, I swear, I just, can't. I can't.

We went to the doctor. He said I had P.A.T. (is there usually a fluttering of the heart valve as it just flaps for several seconds in P.A.T.? Do they go on for hours? Does the heart stop?). He increased my pain meds (the minimal opiate ones he will allow me) so I don’t feel it so it can’t be there anymore. And when Linda said that I was “going downhill very quickly” he decided he needed to do a physical. A physical? Because a disease of autonomic failure where my blood pressure fluxuates from 70/40 to 187/163 in five minutes is a good time to take my blood pressure, my heart rate, my weight (we are trying to get a specialist so we can get some action, even a tube), sorry I give up. He won’t sent me to a neurologist. He won’t send me to a respirologist. He won’t send me to any specialist nor will he treat the auto-immune diseases, or the hypothyroidism (or send me to an endrocrinologist), or the acute anemia (as directed to by the hospital), or the O2 level of 72% recording in his office. But I get a physical. Anyway, Linda or Cheryl will be blogging about what the ‘medical team’ is doing soon, and whatever it is, I am FOR it!

Okay, in other news, I did another blog post yesterday over at the Postcard Project and I would think it be very cool to wander over and let me know what you think. The news which is kind of sucky is that I am not getting much in the way of post so far this week (statutory holidays mess things up!). But last week, I was given a complete CD set of the book of “Wicked” for when I go blind again or have problems reading. My hope is that this version is NOT read by that super nasally guy who is Mr. Pink or the accent George Clooney used from O Brother Where Art Thou. Which would be some sort of hell on earth.

Last week was good though as I got this cool present, which is the Hello Kitty Skull Goth First Aid Kit! The bandaids/plasters are so cool that I would want to cut myself to get one (except since my cuts from last month and back to April/May are not yet healed, this suggestion is a sore point in this apartment). Still, cool, no?

I also got some more cool stickers from many people, including an anonymous source I finally figured out (I thought for a while it was Prince Charles’ second wife). But I did get this postcard set from a completely anonymous source. So anyone who wishes to take credit can. Please do; I like them, I have names to send them too even. But see, the problem is, if I don’t know who sent them, the person most likely to SEND them is also the person most likely to accidentally RECEIVE them. Unless that was the cunning plan: “Why doesn’t Beth ever send me jellyfish postcards?” Solution: Send them to her, and she will inevitably send them to me!

I have been thinking about heaven a bit lately and has anyone else noticed that the traditional views of Heaven and our earthy McDonalds are pretty much the same. Heaven has a sort of uniform set of options, and you get what you want and there are play areas, and everything is sanitary. Isn’t that how heaven is displayed, you get a toy with your food and all? And there is a big glowing figure (Ronald McDonald)! Anyway, another reason why I DO NOT want to go to heaven.

If I had to go somewhere, to live a dream while Linda slogged it out here on earth (which sounds very cowardly of me), I guess it would be to have what I didn’t have, Cheryl and Linda and I all in High School. You know, back when each year was long and high school would be the best 1/4 of our years on earth. We could go hiking and have sleepovers and do sports day together. If I got into varsity again, at least I know that SOMEONE was up there cheering in the stands. And I'd want to be there for Linda yelling, "Throw that sucker!" when she did the shotput and we could flake out after the 'presidental test run'.
Since high school was pretty horrid for me, to pick your friends and then go back and high school and onward, would be cool; not heaven exactly, because I don't want to go through the Marfan's growth spurts, the leg and knee pain, the raging emotions, the sexual doubts, the whole waiting for more to come in the breast department (Me up at the counter: "Hello, I think my breasts got delivered to Stacy who is a DD and she is 16! She got MY SHIPMENT!"). And if I am to be reincarnated, I want to be a cat of course (I mean, who doesn’t!), but I think I will be a cat with a lot of trust issues.
But quite honestly, I think I would rather stay here for a while, a good long while. I am sorry, I know this was supposed to be a mini-series but I plan to turn this into the EFM version of LOST, where instead of getting all the answers in one year and then I pop off, I would LOVE to announce that I have contracted for several seasons.

I’m signing off because it is getting very hard to breath again. Linda has gone to bed but I am so purple that I am still on the main concentrator. Still waiting on the portable. Linda has been arranging for more care for me during the day as going out by myself in my manual is not so much an option. That electric chair order came a bit too late. Sigh. I don’t know how she is dealing with the finances of keeping me out of a home and out of the hospital and I know our focus continues to be to get into the hospice program. Linda really needs a lot of hugs right now. I think we both do. She is trying to cope with bringing me back, or keeping me alive as well as a full workload and bullying and an extreme level of abuse from her bosses.

She needs a lot of hugs right now. Because see, while my plan of exploding literally over her manager would be a good way to go, Linda says no.

So we are struggling, both of us in our own ways. Next time, I will try to be funny, honest. I is just, I cry every day because I am so scared. The big pain, the TIA, the heart infarctions and purple arms I can handle, as it is being VERY busy and in pain, but I'll recover, I know that. It is these hours of being beaten down and struggling for breathe, and the fear when it takes a little longer for that breath or those heart beats to come. But I am still blogging and after this, I am going to do some work on a postcard or two because....I may be “scared shitless” as they say, but there are the battles and bullies we fight in the world, and there are the battles of fear we fight in ourselves. I’m not giving up, not today, and I hope my body remembers that.