What Must be Done.

My medical condition is unique. But then, I have found many people with Lupus or CFS/M.E. or MS or other conditions also have unique presentations, even cancer can/often is unique. Which while it seems that there would be little on this blog for people to connect with because my condition is different, often in posts like “What are you afraid of..” or “Deliberately doing something stupid”, or “Which schoolgirl/boy are you?” it turns out that we have a lot in common, or a lot that I enjoy hearing about, experiences I recognize or like learning about.

So on this blog are the parts which people can’t relate to (hey, nightly nosebleeds used to be “icky” to me, now it is, “same old”), and that parts we can (like my unhealthy obsession with Hello Kitty which makes most drug addictions look cheap by comparison!).

I want to talk about some of the things that over the last while I have learned to face, learned that they ‘must be done.’ Which I think everyone from babysitters facing a child with projectile vomiting, to fathers and mothers and other people with chronic conditions we all have. These things that “must be done.”

First I’m not supposed to talk about doctors and medical or Beacon because it is late and night and I am not oxidizing and stress with fatigue and lack of oxygen are all recognized indicators for seizures. So to distract myself I say I did send another three post cards today and worked on a couple more “surprises.”

Plus Linda has the Toaster on hold in Port Angeles and the owner is getting the sleeps et for me. So thanks to the readers here who convinced Linda that she really SHOULD get that toaster (good job).

It seems that our toaster over has a broken “toast” button so she has been doing her toast on “broil” every day for over two years…making do. So thanks, this will soon be ours!

Okay, back on topic! Now there are a lot of things that are changed, are different and annoying; like how I now have to stop and check my temp and my hydration, have to listen to my body instead of just ordering around and dealing with the consequences later. That’s not what I’m talking about. Getting old isn’t either. Being on oxygen isn’t. But making up a sign for Linda so that when I am in public and have a seizure I can indicate that I am drooling, and she can mop it up in front of everyone. That is something that just has to be done. Just like when I have a fever becuase I am so fatigued I can't control my body, my heart is erratic, my body not oxydizing and I roll up (or are pushed) to a 30 minute boxing class becuase if I want to be better tomorrow....it has to be done.

Telling people that I have brain damage is a "has to be done." There isn’t an easy way and since if I initiate the conversation there is almost no way of knowing means that isn’t easy. To tell a scheduler, “You’ll need to talk to Linda, she has medical power of attorney because I have brain damage, and because I won’t likely recognize people you send, even if they know me.” It has to be done, but it isn’t fun, it isn’t easy. Like explaining why you don’t know the person who knew you for a year and is talking to you like an old friend; it is usually shortened to, “Sorry, I had a partial stroke and I have brain damage.” Always a great opener at parties (that’s a joke, who would invite me to a party? Hint! I’m open most nights!).

Blood Test and other needles, that has to be done. With the sedatives it means I lose almost a whole day (suck!) but it has to be done (I don't sleep great the night before either!). And these days it needs to be done a LOT. And no matter what level you think you can’t take, they just keep raising it. I remember in the UK they used to take ONE vial of blood. When I was first sick they took THREE, then SIX, then one time TEN. After that it was fourteen, another ten, and now, they just took twenty-one vials of blood, with additional blood tests in two hours.

Okay, Area 51 time! I used to have a scarring from an abcess which oozed white blood cells…it was a WAYS into the vagina. The abcess started created scarring. The gyno, who was old school I found out later (like Civil WAR old school) decided to use silver nitrate to make the scarred flesh fall off and try a clean re-growth. Silver Nitrate kills flesh starting with your top nerve endings and then sort of works in for 12 hours. Turns out, they don’t use it anymore (the gyno over here did a biopsy and a laser extraction). But back in the UK, this was a teaching hospital, which meant that I am there, legs in air, feet in stirrups, 60 year old dude staring down my bits. And behind him, was at least one other person who looked about 25 having 'training'. Then he starts applying the silver nitrate (which look like those sparkler firework sticks). Which results in a bit of screaming. At the end, I thank him (I mean, he is doing his job right?). Then starting about 40 minute later the cramps come, and come, and come and I have to shower and douse, or douse over the toilet and see the brown, black, purple and green dead and dying flesh come out. Back to cramps, rinse and repeat for 12 hours, then another day of the 'oozes.' That was every two weeks. He said, “That scarring sure seems resistant.” My gyno here says he was basically putting a bandaid on the problem (a very painful bandaid). Ha, so there, my Area 51 story.

I don’t expect people have the same experience but I expect you have your own experience of “Had to be done.”

For me, what freaks me out is the term, “Needs to be rebroken.” Just seems both morally and somehow otherwise wrong to take a limb and then RE break it. Always gives me the shivers.

Okay, one more example and that is about urine (a fav subject). Right now, in my wheelchair emerg pack along with my oxygen, my ice break packs, my emergency phone (for 911), my emergency taxi money is my emergency underwear. We go someplace, we take emergency underwear AND jogger bottoms. Why? Two reasons. As of a couple weeks ago, the loss of feeling in my legs, thighs has reached the point where I cannot tell whether I am peeing or not. And with retention, that means I can be dripping and dribbling for ages and I’m basically down there with a flashlight trying to find out, “Am I done?” I have to listen for the sound of stream but then, it dies, but suddenly, when I'm halfway outta there, it comes back to life. Hello, bladder, can you please give me a LITTLE notice? Plus with the seizures, among losing arm control, or limb control you can get the bladder doorway stuck in the OPEN where it is broadcasting, “Hey, all ready to pee!” – and the fact you are lying there going, “Shut up, I’m paralyzed and NOT ready!” is ignored.

So it is just one of those things, those things that has to be faced and dealt with, because either I can feel humiliated and squish around (hey the wheelchair cushion is waterproof!). Or I can be assisted to cleaning up and start again. I chose that if an accident happens, I am going for the latter.

So, now I am off to another of those things that they keep wanting me to do…sleep. See we are having a giant heat wave here (super, super hot today - where they give the numbers of people who died the day before in the paper, that kind of hot) and my nap left me nauseous and paralyzed – basically in heat exhaustion. So going to bed, if it is like last night, with the pain and the waking, not fun. But again. It is something that has to be done. And I expect as things continue, much as life continues for everyone, I will face more and more things that ‘must be done’ (I can’t imagine they would want even MORE blood vials in one go – that last one was three pages of tests long).

And just to get the sharing started, I will give one word which “must be…” for a goodly portion of the population, one word, so full of dread, yet such familiarity…..Pap