I started this week with vertigo so bad I couldn’t get out of bed. It was an infection of a part of the ear which is inaccessible and was told it is “medically one of the most debilitating”. Since I wasn’t sure, between the pain and my world being literally on ‘tumble dry’ that I would make it for very long (since the nausea is pretty intense), as I had been eating only about 5-7 meals a week for the last few weeks. The current manager Fran, telling the Assistant Manager NOT to let care workers in isn't helping this (currently I am the ONLY 1 out of 6,000 clients whose building owner/manager will not allow a lock box for the workers to get a key, but won't let them in either).
Back to medical week! You would think a specialist appointment where he tells me that ‘others (xxxxx) died a couple years ago with this disease’ would depress me. Except it is about the level of exercise and the level of autonomic failure, particularly of my diaphragm and heart. The muscle failure, and function failure of my diaphragm is causing breathing problems and loss of oxygen. After taking a long history, labeled ‘difficult and complicated’ (the disease, not I), we talked about the amount of exercise I do, why I do it, and the results it brings (sweating, reduction of edema, pushing blood and oxygen to the extremities and into the capillaries). He stated that ‘others would have died a couple years ago’, that is, without the proactive targeted exercise I do.
The hour at the specialist started with him telling me I couldn’t have this disease as women’s in their 20’s don’t have this complicated a disease. It was the only time being told ‘Your disease isn’t possible’ got a smile, as I explained that I was actually not in my 20’s anymore.
No specialist had ever talked about who died and why, and who lived and why, before. Is there going to be a miracle cure? No. After a specialist and regular medical appointment this week I may have Kidney problems, and am having catheter specialist coming to the home on Monday (oh, that is going to be fun, right!!). And if the specialist is right he wants to take a Biopsy of my Kidney….while I’m awake. That isn’t going to happen, but I still have a stack of vials of blood he wants. And the Diaphragm problems means lung weakness and breathing with the top of my lungs. This is ‘bad’. Plus, in just over five months I am now stabilized at just under 50% of the maximum of Fentynal, and I take them every 48 hours instead of every 72. I still hurt in joints, muscles, nerves but can function, think and sometimes speak (I wasn’t doing so good yesterday after a quadruple intensive exercise session at the Y: only those who work with me several days a week could understand anything I said at all).
The Specialist identified I was taking my syn-thyroid at the wrong time and that it is likely too low. This means I can have less fatigue. And he was the first specialist to acknowledge that something I do because it seems to work (intensive boxing and exercise to make myself sweat) is keeping me alive longer.
Of course, after being told that I am alive because I exercise, I went the next day and exercised like crazy. This it turns out caused massive heart erratic and diaphragm/lung failure which worsened every three hours until I was significantly elevated just to breathe: imagine is as keeping your head above water – if the bed is lowered, even in sleep, I drown. The bright side was waking up to a face that was Edema free(notice the original artists' sketch of me as Oracle from Comic-Con at top left behind me).
In order to lower the edema, I have to retone the muscles, cells and walls which have been stretched. That is a lot of exercise over a long period of time. But the specialist explained that some of what I do, while painful and hard, isn’t actually suicidal and stupid.
Specialist: “If you aren’t dizzy then it doesn’t matter.” (regarding increased heart rate on being vertical)
Me: “Except that I have a heart rate of 176 to brush my teeth, I’ve checked.”
Specialist: “If you aren’t dizzy, then it doesn’t matter.”
Me: “Even over my maximum heart rate? That’s when I tend to pass out.”
Specialist: “Yes, loss of functional oxygen in blood to the brain. But until then, it isn’t dangerous.”
He also explained that what seemed like seizures after I pass out was in fact a combination of lack of oxygen, heat, high heart rate and high blood pressure causing a reaction which looked like a seizure but wasn’t (errr...I hope Linda remembers this). Which means that I can continue working past those incidents.
I am still limited by being MORTAL and though I exercised for an hour at close to my maximum heart rate or higher Wednesday night, I won’t be able to walk, hike, run or the like since just holding on to my walker and using the quad muscles I have still, due to the extremely high heart rate from being upright, is like sprinting up stadium stairs while carrying 100lbs. You might be able to do it for a while, or even get used to doing it for a couple minutes, but that’s all. And you are going to be REALLY tired and sore afterward, no matter how hard a person trains.
So at the beginning of the week, I was looking at how I don’t have that long before I die. While now I am looking at lung, heart, kidney, (perhaps liver) and other problems, but I have the chance to PLAN and try to live longer. Having that makes a big difference. Even knowing that I will run out of pain meds in the future means I need to fight for the highest quality of life now. I know my quality of life is low now and will be as low or lower again BUT I can fight to get it as high as possible and live longer hopefully. I just have to continue to do what is hard and painful and difficult.
Just having the chance to FIGHT for a better life is the gift I have been granted. Let's see what kind of journey I can make of it. It IS going to be an adventure. First, having a little less vertigo and more rest probably would help.
I hope you have a good weekend. I am planning to get out of here for the first time in a long time and go see if the blackberries are ripe. I want to see the world. Thank you again for your comments, letters, postcards of support. I am going to make these next months the best months of my life, if I can. Because I know how easily they can simply go away. Having a diseases like this makes a mockery out of anything ‘expected’ – I do when the disease allows it, and I am working so it will allow me out a lot more (I have most of a pizza gift certificate left for example!).
To try and distract from the pain, I have been watching The Good Wife, on DVD (Season 1 cheap from the UK!). It is produced by Ridley and Tony Scott of Gladiator, Black Hawk Down, American Gangster fame. Together with Michelle and Robert King (writers of all 46 episodes) it has gotten the Golden Globe, six more awards and 39 more nominations. I avoided it because I thought, ‘Oh great, another ‘loyal’ wife as sleezy husband claims he is changed after sex scandal’ But that is covered and done with in 10 minutes. Then it is about a top lawyer who stopped after only a few years practice, now a junior lawyer at a firm, fighting it out (two hires for six months, only one is kept) to keep her job and prove herself more than just a ‘face’ off the tabloids.
While she dresses like Jackie O. is making a fashion line, she’s learned how to not back down, how to let silence do the talking for her and to know when to push her advantage. Each episode is her participation in another case, sometimes as first chair on a small case, sometimes just as a lowly researcher, as she gets dumped the pro bono work, then pulled off for ‘all hands on deck’ disaster regarding a big client.
It has gotten me through one day and a night of extreme pain, which is a high recommendation.
13 hours ago