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 day...um..part 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.
18 hours ago