How are you?

“Life shortening.” The phrase I live with. It means I could die tonight or it means I could live on for several years. When I am likely the third or fourth most expert person with my disease west of Chicago and I will say it plainly, “Haven’t got a clue.” It is impossible that I should still be here, and yet here I am.

How am I? A question I haven’t answered in a long while. I wake every day in pain, which usually means nightmares too (brain interpretes pain into the dreams, today I was run over by a train...but it was a very nice old steam train). I take sedation and pain killers to get my eight hours of sleep. Within two hours I will have passed out again, the slight increase of heat is draining a lot of my strength despite us having two air conditioners going along with fans. Today I woke with a full body scream as my leg muscles went into full spasm/Charlie horse. Luckily Linda was leaving and was able to calm to leg and give me a muscle relaxant. She saves me, so many save me.

I have been in pain in the muscles and the bones, as well as pain on an almost cellular structure. I cannot lie or sit still due to the pain and yet passing out is the only way to stop it. With three different pain killers I can sit enough to read sometimes or focus. Right now I am turned sideways and trying to type through the haze that the pain is bringing; I took these pictures earlier fighting against the nausea and pain before finally falling to the floor to writhe before curling up. That part of that day done.

It doesn’t seem much like living but I am working to keep at it. I have things to look forward to, like the 10K this weekend. They tell me I must not fly. I tell them I fly or throw myself off the railing enough to make it look like flying. I don’t care if it takes all day, I will have this.

Physically, um, lets see, I have much of my right ribs and inter-costal (sic) muscles ripped due to seizures, so that makes it hard to breath, I feel under a weight of stones, buried alive sometimes. As for how my muscles feel, do you know how in gym classes they shout at you that you can do “just one more” until your muscles collapse in quiver. It is always ‘just one more’ and I drop a lot of stuff. But I am not crying, well, not today, or yesterday. That’s just pain, and passing out, and stuff like that. And no one really knows what it is like to be me, or you, do they? They tell us that pain is relative but I never listened enough. Pain and situations are relative and what I have other people think they could not survive (well technically no one can) but I think of what they have endured for years and think, “How do they do it?”

Not just those with disabilities but the AB’s, those who risk themselves, their heart, their emotions in new ventures, in confessions of love, in confessions of limitations. “I cannot do it alone.” Is one of the hardest statements to say. Here I am, according to Linda, with Cheryl and Linda to watch over me. Not exactly the picture I have of myself.

Now this is how I tend to see myself: I am all three, I am the ‘serious’ one trying to get some reading done, I am the one calm and serene with the parasol (notice that one is small and far away) and I am the wild child who has gone crazy on the sunny day with a hose of water. Woo Hoo! Why is everyone such a party pooper!?

With 15 years behind me and new friends coming up and passing the one year mark I have to wonder how much can the lion and the lamb live together, the cat and the mouse. I think, that perhaps some things, like caring, like having desires and wanting someone who gets those desires is universal. Of course, I am the cat here because I have the rocking jewelry. And because Linda has something to eat (hazelnut cheese!).

I am coming to terms with myself, or rather making friends with isolation. I have always been one to jump into things and when I can’t, I instead plan what things I am to jump into. Now, I lie on a bed, propped up and listen to the rain, and try to breath, try to read a little. I try to dream but after a year of trying to remember, it is easier to look backward than forward.

And yet there are people, those with chronic illnesses, who have learned to make friends with themselves and their dreams. So there are dreams that are slower, are more meditative. Maybe they can teach me how to live out the ‘shortened life’ in a way that is different. People didn’t understand what it meant to love something and lose it of choice. Well, see, you need to love yourself enough, that while you caress yourself, you are also strangling the life out of yourself. Because THAT you has to die so the new you can live. How can I learn to shower with assistance, to need help on and off every wheelchair and toilet, need assistance in these things in order to spent my thirty or sixty minutes outside a couple times a week? I choose where I spend what little reserve I have, and I can’t do that by being Elizabeth Fucking McClung. I love her, but her vigor is killing me, her ‘my way, even if it kills me…” WILL kill me.

So I choose to stay indoors most days,I choose to stay in bed some days, I move very little and get as much help as possible so that I do have a choice left. That is what it means. I CAN go out with Linda and Cheryl because I learned to love them enough to realize what real selfishness was: wanting it all without paying the price.

That said, as we took these pictures, Linda said, “Oh, I don’t think I would look that good in a tux.” My heart leapt! “Uh….well, I don’t look good in green.” I mumbled.
“You look great in green!” she said.

“I think you would look great in a tux.” I said. We looked at each other and Linda said, “You know, there is a bottle of champagne in the fridge!”

We were, alas woken by night care. I asked the night care worker, “You aren’t able to assist us with sex are you?” She sort of stared. “I mean moving me to different positions?” I amplified.
“We can’t do any lifting!” she said with a “WHEW!” little laugh. DARN.

Linda is talking about moving to an apartment where I can have a kitten. I am for this except for the packing part. I don’t know if Linda has thought this through since, she is likely to sort of end up with TWO kittens, as hey, if playing with string looks fun, why shouldn’t I do it! Of course, a kitten might mess up my elaborate preparations to meet Linda at the door as she is coming home!
How am I? I am achingly lonely, even when I am surrounded by people who need information whether it is workers or doctors. I think of too much. I think about how these are the same workers who were there when my grandmother’s oxygen wasn’t turned on, and she was suffocating. Are they the ones who might work for me? I think about how she isn’t coming back, not another story, not another question answered. It bounces around in the head. Just like how I went on the MSA and autonomic failure websites and forums and asked some questions and gave some comments and was roundly ignored because…I was a freak. Even for those with autonomic failure, my rate of decline is 3X to five times faster than them. I am younger (people are there to talk about taking care of grandparents...and parents sometimes), I have done everything they say to to: seen a neurologist, seen a specialist of autonomic failure who can say for sure that no, this isn’t the “nice” kind of autonomic failure. But She owns the clinic, has seen thousands if not tens of thousands of people with central autonomic failure and I have that and a bag of fun more and yet...she doesn’t know what this is. That bangs around in my brain, and I am the one outside when everyone else is indoors where it is warm.
You really want to know what I feel like? Once my parents left and I think my brother was supposed to be watching me, or somehow everyone thought everyone else was supposed to be watching me and I was playing with the other kids and then one by one they went home. They had homes. And it started to rain. Until eventually I was alone. And every time someone asked I said, in slightly more hysterical tones that THEY were coming for ME. They weren’t going to leave ME! They were COMING! I was going to go home and be warm and be fussed over, and I wasn’t going to be out here, on the saddest of all places; a playground with no one to play with and pelting with rain. But they didn’t come.

I guess that is part of the looking forward/looking back thing I need to work on; I am trying, and until then, Linda and Cheryl, who know what it is like to have a child, a teen, an adult and an person who can’t understand why they can’t be an equal (Right before they go into a seizure and forget the last two days) are taking care of me. They know what can keep m occupied (sometimes even happy), and sometimes it is rather simple and sometimes complex. But I always try to have cool and matching jewelry! I guess that is the honest answer to “How am I?”

Er....so..um...how are you?

Postcards, the dog meet and greet, a cat and uke.

Sunday we worked on the last of the postcards and I wrote the last of the postcards. It wasn’t the 40+ we were hoping for but rather 22, and Linda and Cheryl did much of the postcard matching as I was mentally incapacitated at the time. I did my share of the stamping and here we have some of the new rubber stamps as well as some of the new inks we are trying out. I think they are very pretty.Also if you look closely, some time ago, a reader gave us the gift from the post office of Photo Stamps (we still have credit left - stamps.com – hint hint!), where you upload photos and then they get turned into stamps by the post office. Then they are sent to you to use. You can see the two types of pictures we picked (I got to pick one – me racing! Linda picked the other – me the town slut!).

Then in the early afternoon we went to the dog meet. It isn’t an official event except during different festivals (like during pride for example) but it is a 1.5 to 2 km park where dogs can meet each other and run and play and have FUN. And the owners can meet each other as well while we get to play the ‘what breed is that?’ game. This week we saw a small dog which was a cross breed of a daschund and a black Labrador I think, we were all going, ‘and how did that work....physically?’ I did not take pictures of the dogs because I need consent of the owners (many are show dogs) and besides they were there to play. And some were doing stick catching and some had those ball catchers and would run and leap for the ball.

I like BIG dogs, the bigger the better, there is one dog in town that looks a bit like a small bear which comes, but it wasn’t there this week. And Linda like the LITTLE dogs, particularly if they are carrying a BIG stick. At one point there was a TINY dog and a large to medium dog fighting over a stick and I said, “You’re thinking, ‘if only the little one would win and carry it off!’ and she started grinning.” Seriously, she can see it over and over again and she loves it. She loves the small dogs (which ones do you like?).

It was a gorgous day with the straits being clear and smooth. There were only about 60 dogs or so when we went instead of the 200+ that show up. I know because it is also a ranked jogging site with markers and if you happen to TRY to go jogging on Sunday, well, good luck, not just in being chased but in getting around the groups of five to eight dogs having a chat. But the first thing we ran into was a CAT. Yes, someone, a goth girl had brought a cat down to the dog meet, on a leash. Well, I had never seen a cat on a leash being walked much less on the Sunday dog meet but it seemed okay, like to go and explore. But of course, a dog found it, there was barking and hissing and backs raised and then after the dog left, the cat started crying, and the owner picked it up and was going home. It sounded just like a human. I had never heard a cat cry before, and it was kind of sad and creepy, that it was so frightened as to cry. I did feel bad for the cat.

We walked and rolled the length of the course and Cheryl and I had a picture taken, so here is Cheryl, yes she does come and visit, she isn’t just a figment of my imagination. Of course we (Cheryl and I, the two lesbian teenagers) were enjoying the other joys of the days of spring; women in not much at all. Some jogging, some with annoying arms around males (ug!), but still, very nice. Back in non-ogling land, here is the no leash area, with baggies every 100 yards or so. A path follows the top of the cliff with many access points down, this is the best one for smaller dogs. It has several fair sized running areas with a beach to go down to and the sea to jump in and then shake your coat ALL over your owner to show how much you LOVE THEM, plus sticks to pick up. So a fun park for dogs.

We saw a tiny dog, I think it was a small corgi bark and drive off a medium sized dog. I was sort of impressed and sort of felt, that just because the dog is bigger doesn’t mean it is not gentle or doesn’t want to fight. I like watching dogs because they are very easy to read. There was one Dalmatian which was playing catch with a stick and then another dog ran by, they sniffed and it ran for a few seconds with the ‘new friend’ but then the owner threw the stick and the dog kept looking back at the friend and the stick and eventually the stick won. It raced back, picked up the stick and then ran about to see if it could show it off to the new friend, “Look! I have a stick!” Even the ones who wanted to run some more and being put in the car were like, “More, more, we want more!”

Afterward we dropped off Cheryl at the Ferry and I promised Cheryl that next time we would have Jiffy Pop Popcorn! (when did you last have some?) Which indicated I was about 18-19 as Linda had NEVER heard me talk about Jiffy Pop (we used to have it on group camp-outs) and then I went for ice cream with Linda and had butterscotch instead of strawberry (again, what I used to do at 18-19). While she was standing in line this grandmother and her grandchild of 9-10 with long blond hair and wide eyes and full lips was there, and we looked at each other and I looked over the jeans and top and really quite gorgeous blonde hair. In the car, Linda said the girl in front had a soft voice but was very determined in what she wanted. I said I believe it because the girl was a boy. Yup, it was a Uke. I think they really didn't want to cut the hair, even if people mistook them for a girl. I looked carefullly and there were no little bit of hair ribbon or even patches on jeans that a mom would have snuck in to satisfy herself that her daughter would be identified and a girl (moms obsess about these things). Linda agreed that yes, the grandmother never said she. People just saw the hair and eyes and lips and made an assumption. Have to say one of the best hair of any of the children, girls or boys that were there. I don’t know what the future holds but he KNOWS what he wants and just keeps repeating himself until he gets it.

So that was my day out, I then went back and crashed big time. But at least I got some postcards done and some time out. There were also many packages. I think this is part of the new life I need to learn how to deal with; compromise (I know, the level of swearing!). I may not get all that I want but I got some postcards done, and I got to go out and have fun (and see a uke!). This is just a bit of early week fluff because it seems not just me but a lot of people are having a bad week. So I hope there was a smile somewhere. Don’t worry if you are a cat person, cat girls are ahead!

Forgetting and regressing: tastes of my life

Important things first: The kitty will be called Miko so I can a personal shrine maiden
....or Indy so I can remember that I’m not dead yet. Sorry, still split on names but I am sure this will resolve itself soon. Second thing is that after seeing me in my fox eared hat Linda immediately demanded that she be able to wear it. She is very much like a sibling sometimes and I am surprised she even gave it back. But it suits her so maybe we will get a cat eared one for her.

Next important thing is that I am writing this while wearing a corset. A black corset with lace and black ribbons down the back. Will anyone see me wearing this? No. But I have decided that I, not my disease will start to dictate some things. I think I have to thank Abi for mentioning she had a corset, of which I want a picture (purple corset?) of her in it. And it helped me decide, “I will wear a corset today; in fact tomorrow when I go out to the pub I will wear a corset and a skirt or maybe I will wear something else but I am going to dress up!”

Instead of just transferring out of bed, I’m going to reclaim sexual playfulness, my whimsy - I want it all (take a note!). Yes it will take energy but with Linda to help, and Cheryl it is possible, and that is what I am about, right? The possible. I live with the sword above my head on thread. Maybe my foot will stop hurting or the other will go back to normal size if the letter sent gets read and I get a better doctor. But right now, I am living. Living. Not Dead. And I plan on doing that for some time. And I want to thank Frida, Cath, Tom, TJ, Raccoon, Wendryn, Abi, Lene, Robin, Anna, and so many other people because…..the plan is starting to work. I am looking forward to Manga. Indeed, I ordered some with gift certificates last night so that they would arrive in TWO Fridays from now. I want to look forward to every Saturday when the post comes.

I am READING. Do you know how long it has been since I have read? I am reading a manga series called Suzuka about track and a romance triangle on the track team because of my memory regression, I remember my track training for the hurdles, the hours spent in trying to get my lag leg to go lower, to just clear the hurdles. The running sprints until you vomit. The high jump, over and over. That is one HARD piece of metal to land on. So a romance around a female high jumper (which I did) and a male 100 yard sprinter (which I did not, I did 220, 440 and 110 hurdles) is right up my alley (plus the team manager who gets people towels and is after the guy). Reading is fun. I think I missed it. I will try to get a book or two of the series a week.

There is also, to get a bit biological, two different pro-biotics on the wishlist, as we have figured out that I have absolutely no natural fauna in my intestines. So the more pro-biotics we have, the more we can try to restart that and the more I can absorb different minerals and vitamins from my food, which I haven’t been. That means more energy. Am I going to beat this disease? Dunno, but I’m not waiting around for some doctor who won’t order an X-ray. With the help of many, many people I am starting to look ahead. And I am entering the Times Colonist 10K that is in six to seven weeks. I would like to find another race before that, as I am already in training. That 10K is part of the B.C. Race Series and will give me a ranking, provincially and nationally, if I want to go to other races in the series. Will I pass out? Yeah. Will I make the finish? Wait and see. What I will say is that the head coach of wheelchair racing will be there to race, and it will be 17 years of racing for him. He is faster than me by 8-9 minutes. I am going to try and pass him. I am going to try and finish before him. That’s right, I am not just participating, I am RACING.

Hard to believe it but yes, Elizabeth McClung has a race, like competition, and has an opponent and almost has a plan. Okay, yes he is a male and has been doing this well, almost decades longer than me. He has a better racing chair than me, he has better racing gloves than me, he has better form than me, and he won’t have to be on oxygen or carry oxygen canisters. That is the down side, but my advantages are…..um……I can work on my form AND I will be on oxygen, and I will only be on oxygen for the time it took him to finish the course last year, 48 minutes. Yeah, is someone who is terminal and stops breathing and has heart problems taking gambles with oxygen a good idea? No, but it is a very Elizabeth idea. I am serious. I race, I go, and have one good hour, that is all I need, one good hour to live my life. I am willing to work toward that.

Most people can’t understand the complexity and personal devastation of this disease. I am now advanced MS in the morning and progressed ALS at night. That’s just the physical. It is my mind, ripped slowly to pieces that bothers me the most. I say that I can’t remember beyond 24 hour or 48 hours with emotional exceptions and people say, “Oh, wow, that’s me on a good day.” Really? Do you know the name of your partner or do you say, “Lady, why am I in this bed?” Do you remember the names of your children, your last vacation, you appointment this week, your appointment last week, the last time you had sex, the last time you had a romantic evening, the person you fell in love with, and how that happened? Do you know what day it is, what month, what year? Okay, now take all that away, take everything away and you don’t know what country or city you are in and try to go get a coffee. First, you don’t know where money is kept, but say you have some in the wheelchair, you don’t know why you are in a wheelchair but you body seems to know. They ask your name, and you realize you don’t know what your middle name is. You stutter out your name and they start asking about loyalty cards and people are staring and you realize you don’t have a clue what they are on about, or what just happened to coffee? You have never heard of this chain, STAR buck – is it named after a horse or a spaceship? You just want to be home. But when you are there a total stranger comes in and says your name. You ask what they are doing? You want to dial the police. They say they come every week to get you lunch. They look toward the kitchen so you can tell they have been here before, so you let them stay. You ask them questions about what they are doing and how long they are staying and they laugh and say you ask the same questions every week. The agency won’t let you take pictures of the workers so that you have an idea who might come through that door. They scare you because they know so much about you that even you don’t know.

That is an iota of what is like, not forgotten keys but not knowing how to get to the bathroom in your own apartment because you don’t recognize the apartment as yours and you are too scared to open doors randomly. It is about having a conversation or sending an email you spent an hour on only to be told you did that three days ago. It is about buying things over and over and over.

So because you have an extraordinary IQ, you can process information quickly, and you take every single eye and body cue to play along. A person comes in and knows where your phone is, so they must be home care. They know your name and you apologize and ask theirs, and did that problem get resolved? (Everyone has a problem) So they start talking about their daughter, and suddenly you know something, and they think you remember. And that is how you get by, spending all your time either taking cues or reminding yourself EVERY day of what you have to remember the next day, leaving lists, saying things over and over, in order to remember.

Then there is regression. Which now seems permanent. Whatever age I am biologically, that is not where I am getting my language, or my memory. Some days I am 20, some days I am 23, sometimes 18, I am fresh in the world. I have all sorts of dreams and hopes and plans I want to try out. Linda talks about a class and I tell her that I want to take pole dancing, and laugh about how my parents would freak, so let’s do it! I want to take a degree to be a lawyer. I want to plan a trip to go on a Safari, and then maybe I could go back to California and hike the San Gabriels, see all the white tailed deer up there. My life is ahead of me, my choices ahead of me. I want to get up tomorrow and go up to uni and see what clubs are interesting, maybe I will join the frisbee golf group, only there are WAY too many guys with beards in that group. I want to do something fun, I want to learn juggling from some guy and have him try to pick me up and then leave with my girlfriend. I need to get back on my jogging schedule, because there is a marathon coming up….what city are we in again? Oh, we can do the Seattle marathon then. And these are the memories I know, the running, the practice. I like reading manga, I want to work in a book store, that would be cool, wouldn’t it, then I could buy it at discount or maybe read it for free. I can do that, work part time in the book store while I go to uni for my law degree, I mean I aced my first degree and I was invited to join the debate team. These are my memories, these are my words, this happens not once but multiple times a day.

The answer is always the same. You can’t, I’m sorry sweetie but you can’t, you did your degrees and now you are very sick. “Like how sick, like something from university, a bad flu?”

Like dying.

What?

Like dying. And she tells me and I say, no, no, I’m going to go to law school, and I’m crying and I’m going to campus to find some friends and she says that no, I am too weak for that. And I cry and tell her it is the mono or something like that and she tells me, again, almost every day that I can’t, remember, I can’t. Because I’m not 21, because I’m not 19, because I’m not starting my life with all sorts of choices ahead of me, I am finishing, and just hanging on. And please calm down or it will trigger a seizure. “A seizure? I don’t have seizures?” You do now sweetie. And please, you don’t want one.

Virtually every day, sometimes several times a day. For Linda it must be hell, but for me? I had every dream, every future that I had ripped away. I was looking forward to the new semester, to pole dancing class to having FUN, come on, you are only 21 once! Only now I’m not? And all that is gone, and I can’t get a job so I can have fun? And I am dying? And I have seizures, and by this time my speech is going, and my eyes widen in horror as my speech becomes slurred to the point of mush. And Linda lifts me, Linda LIFTS ME? She lifts me into a wheelchair and pushes me to the bed. And I am not going to take a year off and travel the world, or go to Australia on a six month work visa, or head out and apply around town, because I am in a wheelchair and there in front of me is a hospital bed. And THIS is my life. THIS.I try not to cry but the pain and the difference between what my mind tells me is possible and what my body is saying, what is in front of me is too much.

NO, No, no, I AM 21! I am 19! I am 23! I have choices, I have to go on the skiing trip this month and do the jumps and scare myself and everyone else! Not at ALL like last year when I ended up at the bottom of the slope with the "Caution Hazard!" sign wrapped around me! I am not this person being lifted into a hospital bed. That’s not me, it’s not me. I can run.....why can’t they see? I can run. They say I run like a gazelle.

Everything I know is fracturing under me, like ice cracking, showing the icy water beneath.
That describes a pretty good day. This blog is the best four hours of 48 to 64 hours. There are all sorts of hell.

Right now, writing this, I think I am probably 25 to 27, I know I am not 21 but I have no idea what age I am. I know I am in Victoria but most things Linda talks about I don’t remember. I can tell they are important to her but I can’t remember, I can’t. I remember I used to try until my brain exploded. Now I just smile that sad smile which means, that she is talking to the empty shell. Sometimes I regress to 7 or 5 and that isn’t good, or 12. 12 means at least communication. Even if there is a lot of pouting. Sometimes it is 4 or 5 and I go around untying everything in sight, every shoelace is untied, and I giggle all the time. I don’t think I’ve gotten to the point where I flush toilet paper, but I am sure I will. That is just part of this disease. The chance to talk to ME, to even part of me, the me who can recognize from the bookshelves that this was a pretty damn smart person. Even if I can’t feel anything about these books, they are very interesting and odd, from 17th century chapbooks and Babylonian dictionaries to books of poisons. So talking to the me that can recognize that I am probably not 25 is fortunate, as I won’t be here for long. Hard to know how long. And 25 is a LOT less emotional than 19.
I don’t know if that helps you understand what is happening to me, or if you just find it amusing. It isn’t amusing when someone comes in and tells you everything you hope and dream and believe in, and are hoping for in the future is a LIE, because what you feel and think is a LIE. Because you are dying and now it is time to go to your hospital bed, and you try to protest and you can’t speak, and you are too weak to move. And you try to tell them, no, that isn’t true! How can all that I think be a lie, the vacation in spring break, the job at the university bookstore, the class paper coming up, how can that be a lie? And that is replaced with the knowledge which drips down like acid that you are dying, that will die, you will die soon. And that none of the things you had planned in your brain will happen. All of your hopes and choices are gone, that you are going to die, and this is just part of your brain dying.

I hope that helps. Parts of the brain haven't stopped dying, or haven't yet. I try with the parts I have when I am connected to keep challenging myself mentally. I am trying to create new brain connections with reading. I have even picked out some books with WORDS to read. And Linda is challenging herself too; she has chosen a book on care-giving highly recommended on the wishlist. Also after I pestered her to have some FUN time, she put on all the romances from Flipside she hasn’t read yet (flipside is a funny, 21st century romance with independent women and gay side characters – 1 cent plus postage). As for me, the first four books I want to try reading are on the wishlist: Gosick (Conan Doyle style mystery with goth girl detective), Be with You and Ballad of the Shinigami vol 1 & 2. The last three are about death, and Shinigami is about how Momo, a girl with a cat who helps people move on. While Be with You is about what death means for those who die and those left behind. The four are on the wishlist and all qualify for 4 books for the price of three for free shipping. If anyone wants to get me a gift, this is what I would like: These four books so I can learn to read, and to learn how other people deal with dying. If not, that is okay too, I will find a way. (oh, yes, Linda learned early on that when I regress to 10 and have no sense of money that using her Visa to buy a dozen plushies on Amazon is a good reason to hide the Visa!)

The problem is that not even Linda can accept the disease, and I can’t either. I force myself harder and harder to work; because I have less and less time when I have a workable mind. I WANT e-friends. But I am chasing a life, that isn’t mine anymore. Yes, I am going to race, but not if I can’t learn how to sit and read, or sit and watch TV or roll to the park and relax in the sun. I am not 21 or 23 and I don’t have that energy, no matter what my mind says. I need to learn how to have fun as ME, not chasing something I no longer can be.

My new wheelchair arrives next week. I will be embarrassed to take it outside. While I am too weak to push my manual myself, it seems like giving in. I already have to give in and give up dreams every day. But I will, because I have too. That is how I fight now, by forcing myself to take it, and to go on.
Like all medical stuff we got hit with a big bill, as the ramp to get it into our van isn’t covered, and geez are those things expensive (ouch!). Our medical fund has taken a hit between that, the non covered medicine, and the pro-biotics. It turns out that dying, or rather NOT dying is an expensive business. Almost daily expensive. Particularly the oxygen and the full EMT station we have here at home (once the heart paddles arrive we will have the same medicine and equipment as a hospital too, except IV’s and blood transfusions).

But I am going in the 10K, and other races, and go to Hawaii. So next week, I am selling my bike. My custom make extra large frame and extra spokes and triple bunted touring bike (the frame is 27 inches, you can’t ride it if you are under 6’2”). So if you are interested let me know. Same with my skis. While my brain tells me I CAN ride my bike, the other part tells me that no, I have limited time and if I want to have dreams, I need to do what I must to fulfill them, NOW.

There is no doubt about the dying, and I don’t determine that or the regressions, I have no control over that. I do have control over the race and the training and wearing a corset even though I am staying inside today because I am a still a sexy wild woman. And Linda will see it. If you get what I mean. This is what I am after four days of being sick and having a fever. Don’t like it? I’ll race you? Oh, you are able bodied, I’ll STILL race you! I may have the strength of a kitten but I got my attitude back, at least off and on. Thanks to everyone who worked with me to help me get that. I will wear a corset tomorrow, and I will go out. Because tomorrow may be the day I die, but if not, I am looking forward to the manga coming, and starting to read books with all words again. And that was a group effort.