I feel alone~

Well you know all those times whenever ur down or sad there is always someone who would eventually say that they would be there for you? Yea same happened to me as I simply can't remember all those people who actually said that to me. Buthen whenever I really am in need of someone to actually make me feel better or by just having someone around, nobody is every around!!

Hey it's not like you could actually go and meet anyone just because your upset right? Sigh.

And what happens is that when called or sms, everyone is so busy with their own life and own stuffs that sometimes I end up wondering if they even care whether I'd be alive or dead.... But let's just say that it's they who is having the problem.......

Look at how they'd be chasing me and would get so pissed off that I couldn't be there. What am I? Some emotion-less human or wait! Am I even a human to begin with? *smack head*

At times I just feel like I wanna break free at any costs. No matter what ever way am sorry but that's how I feel. Wishing upon the star for an angel to grab ma soul away~ Sigh.....

All I want is just some care... Am I asking too much? Though there are a few people who actually LOVE to know what is actually going on with me so they could practically beat me down even more than I already am....

The above pic is how I exactly feel. I've been faking as if I am happy and all but actually I feel like I am just dying slowly inside. I wanna let go of it. But HOW?!!

Everytime I just feel almost snapping at someone for even small issues. Sometimes feel like just wanna go bang my head on the wall for no reason or even worst feel like strangling ownself. T____T

I need a break. Someone kindly save me.... Even a day would do....

This is now: survival, eating ashes and going on

A picture from last night. My head resting on INDY’s headrest I am passed out and not breathing. I am wearing a eye-patch as during my conscious states my eye finally had opened but the image had not integrated in my brain (just garbage). I am my sleepwear, which I lived in much of this week. On a 3 or 4 setting of oxygen and ‘Rabid’ my squirrel is on my lap. If you want to know why I call the squirrel ‘Rabid’, he tends to vibrate at very high speeds, is easily bored and well, look at those EYES! My fingertips are purple and my entire arms and torso is in secondary Raynaud’s (I lost consciousness due to lack of oxygen in the brain). I had pushed the panic button because I could not call Linda, without oxygen to my vocal cords. My heart had just stopped long enough to cause a major problem of loss of oxygen to my system, and I would soon need reviving, so I pushed the button while I could.

People see me with squirrels. People see me doing things like going to lava. And yes, my hair is falling out and I look like crap and I am visually ill an on oxygen but I am still out there doing stuff! Right? Wrong.

From ‘Anticipatory Grief Package’: A Patient’s Perspective “It is important for people to pace themselves and save their energy for the activities that are most important to them.”

I spend 99% of my time looking like this (the unmoving paced person), feeling like something scraped off the side of highway that stinks and sticks. I am in INDY, supported in my back and body by the Wheelchair INDY or the hospital bed, with head support. I do that so I CAN send postcards, and so that I CAN send emails and packages. I am now in constant oxygen deprivation, low saturation levels and so I have to focus and stay focused to get what I want done. Like blogs and like going out and feeding squirrels. This is my life.

“Loneliness increases as family roles change and the patient becomes more dependant on care.” Well, why don’t I continue as I was in Hawaii? Well first off, I didn’t have much longer that I could have lasted in Hawaii, and have been bleeding from somewhere, nosebleeds, spontanous bruising, anal, oral, lung bleeding ever since returning. I hope to build up reserves, and I am happy I went to Hawaii but there was a calculated cost beyond the financial (which cleaned us all out). This is another picture of me, here, I am not sure, maybe in pre or post seizure as my eyes seem open but rolled back. I am on the face mask, continuous flow oxygen at maximum with a ‘rebreather’ mask to increase the percentage of oxygen. See, I could BE in Hawaii because I had two people to bring me back from the edge of death and they did, they did many times a day. I have permanent damage from the trip, and I am LUCKY to have it limited to the areas it is. It was a great trip. But when I only have one or two hours of care a day, then trying to be at that level of activity is a good way to fall over due to lack of oxygen and stop breathing. And when Linda comes home four hours later, that is still how I will be. I know that because every week, even without 24 hour caregiving, I still have to be resuscitated or assisted in breathing, in stopping a seizure cycle, in regulating my heart about a dozen times a week.

You, the reader, you get a massive pain spreading across your back, or in your chest, it is hard to breath, it is spreading down your arm. You look down and you see a hand that has purple fingertips, and now blue fingertips and purple to the first joint. Someone calls 911 and you go to the hospital. This is a MAJOR event in your life, this is a heart infarction and the next one is going to be if not lethal, then will likely trigger a stroke. This is an event people often experience ONCE in their life. When they die.

I experience that almost every day.

After the squirrels, after the nice pictures, and the eagle, when Cheryl went home; I had gone without much sleep and pushed myself without reserves. Not low on reserves, but no reserves. So my legs stopped, and my arms. I sat there in INDY and waited for wetting myself. Linda was exhausted, my fingers were dusky and turning black, my thumb was black, my palm was black. That is how bad my circulation was. Linda got me into the bathroom and on the toilet. I had retention (I was too weak to trigger the muscles to allow me to pee – if you are older, these wear out and you pee yourself, if young sometimes, this happens, you are stuck, until it backs up into your kidney). Linda was too weak to be able to move me. “Beth, you have to help, PLEASE, please.” she begged me.

I couldn’t. I couldn’t move my legs, my hips, my arms. I was barely hanging on to conscious. I had been expending energy to hide the amount of care I needed. Part pride, part love I thought. Now I wondered if leaving Linda with an unrealistic idea was love or not. And when the reserves are gone, they are gone. So, I am stuck on a toilet, she is exhausted. What now?

She went and slept. We had, she had, NO ONE we could call. My parents response has been a combination of distancing and pretending that everything will work out so long as they don’t see it. We were alone. She gave me a drink to drink and when that was absorbed in 20 minutes I had enough strength to help drink the rest of it. Eventually I peed. Two hours later, she was stronger and so was I, and together we got me into bed. We also used a word to look into: Sling.

The amount of energy that most people expend making a nice Sunday breakfast is what I have for a week or half a week. That’s why Linda takes pictures of what I do. So, yeah, I’m really ill. REALLY ILL. Now does that mean that Hawaii was it? The last hurrah?

No.

I am a calculating and ruthless bitch. Because my opponent is Death. Death feels no remorse, no feelings at all. There is no sorrow at taking me too soon. So what if I want what other people have as a sign of adult: understanding mentally, a job, goals, dreams, friends, to be treated as an equal? So what? If I ever miscalculate and I have, and Linda or some person at a place where I am usually banned afterward catches me, and I end up in hospital and that’s a mistake I can’t make again. So it happens right now I have minimal medical care. But I have oxygen and pills. I have a computer and wheelchairs. Sometimes I have both eyes, sometimes just one. It is what it is, and I have to win anyway.


So if it takes me 40 minutes to get out of bed, and it does, most days, takes 10 minutes to get a hand moving and under control, then that is what it takes. And if I miss the wheelchair, then I drag myself. Because that is what it is. This is it: life. There is no replay, there is no retake. If I want to live, then I have to keep going.

Most of the time I grin when I am in pain like when your skin is peeling the next day from a bad burn, a real bad burn. I grin because someone just told me that “Oh you won’t be able to take your wheelchair...” As I roll past them. The amount of times I have calculated the odds of just surviving getting to my pills in time, something like using up three days worth of energy to show some AB person who articulated that I must live in the box is nothing. It is so nothing, I give it a fierce grin.

I think back to Fredrick II, or ‘Fredrick the Great’ in Prussia, who grabbed Silesia from Austria, starting wars lasting 20+ years and resulting in the ‘Seven Years War’ which pitted the small Prussia against France, Austria, Russia and every other land power. Fredrick, one of the last great leaders to fight as not just the King but the General, in the field of battle, faced odds of 2 to 1, 3 to 1, French Armies, Austrian Armies and he won. Because he had to win. If he lost a SINGLE battle his small country was not doubled in power which Silesia would do, but lost. Only Britain was helping then financially. In 1759 it seemed that everything that Fredrick had fought for was lost. 47,000 Russians beat 26,000 Prussians; the French forced the surrender of Prussian Troops and Fredrick lost half his army in one battle, his worst defeat. He considered giving up and abdicating. I consider giving up. Giving in to the pain. Not coming back when they push and prod me to ‘breath’, and I start to follow that, but I do come back.

Fredrick considered suicide. And looking at what kind of death I have in front of me, I consider suicide a lot. It is not pretty, in the same way I am not pretty. I was never beautiful, but I was pretty, a strong woman and cute in my own way. But I won’t look like that again, I won’t be getting stronger. The arrow has pierced my breast, the saber is thrown from my hands. I was looking at pictures of me fencing last night and my goodness the power I had. Fit and strong. But that was then. Now I am mortally wounded. And so that is where for most the story stops.

I am not most. Nor was Fredrick. He went down among the people, and raised another army. The next year at odds of 3 to 1 Fredrick won, but the battle raged on, literally the entire continent of Europe was against him. And in the next year Prussia lost its last port to the sea and thus help from the British. Everyone believed that Prussia’s end was here, the army down to only 60,000 men. And then…..again, considering suicide, Fredrick found out that the Empress of Russia had died and Peter III ascended. Now Peter III LOVED Fredrick, because Peter III thought he was like a hero from a storybook, and in many ways he was. A King who risked everything for his nation, who every year took on the worst attacks and won, who faced the worse conditions and when it seemed that wounded in so many areas, Prussia was done, Fredrick went to the countryside and showed the people that THEY are Prussia. And he rose again, in front of a victorious army. Peter III withdrew the Russian troops and got Sweden off Prussia’s back and so Prussia took on and won the Austrians and French. It was the miracle. A miracle that had been hard fought for.

This did not last long as Catherine, Peter III’s wife (know later as Catherine the GREAT) thought her husband an idiot and killed him, then ascended the throne and settled the war, having everything return to what it was BEFORE the war. Prussia remained, Fredrick remained, and Silesia was part of Prussia, part of what would become Germany.

So, some interesting history, so what. The so what is that in two hours, after spending 4 hours with a doctor, and up late last night ill, I am going to badminton. Because at badminton I sweat, and if I sweat another week. I live. Or my chance of long term living increases. My chance of going to New Orleans increases. And heaven those, including the parts of myself screaming, “No, no, let us rest!”, heaven help those who try and stop me.
Because I haven’t exactly got over into ‘acceptance’ yet in the grief cycle.

One of the reasons I was at the doctor was medication, including more heart medication (we are now MAXED out Ms. Heart, okay?!) and florastor, my probiotic which is a prosthetic intestine for me. We are down to 12 days of florastor and then, though I am malnourished, I will have no way to absorb nutrients. That is on my wishlist. And unashamed so, because if I have to beg in the street…I have a cup. Yes, the needs seem high now: another wrist support and a book or something for Linda to have down time with. Linda, who alone, waiting for the help from Beacon and VIHA has not had a night off in over six months. She is always and ever there for me. I wish I could cradle her. I wish I could give her rest. Give her a weeks vacation. And I can’t even give a book. We need wireless phones (because sometimes like I couldn’t get off the toilet, I can’t get out of bed to let the ‘caregivers’ IN), Linda is figuring out which ones, and then they will show up on the wishlist. By Nov. 2nd, I have to sign up and I am signing up for Boxing because the longer I sweat, the more my skin, the largest organ in the human body, heals. And I need that. I am also signing up for badminton and volleyball. I have no money to sign up with. We found out today that I need to get oils, as my body can absorb the oils of the vitamins it is malnourished in having while it cannot absorb the vitamins. Boxing is $55, Volleyball is $45, the oils I don’t know. To some it may seem little to some it may seem doable, this week it is…….yeah. If you want to help, go to the blog, A Girl's Gotta Fly and email Linda. Because I can't REMEMBER, I don't understand the math things that well so she does that, and I try to focus on the surviving (and the flying!). So you can email her over at Girl's Gotta Fly if you are interested.

I am hoping, but I am not asking. I would if I could ask for help for Linda. Help her, but I don’t know how. Come over and watch me for a night, help me with my pills. But that is impossible for most if not all. And for money, I know how many people are having tough times. And look at me, I just went on vacation (a vacation that extended my life from months to over a year - survival). And in time, I will have resources. But now I don’t. I have no income and no health to generate it. And yet, I sell on Amazon, I will sell on ebay, I will create a nest egg and have that emergency money. It is just I kind of used emergency money on loot for people in Hawaii (I was one of those people, I admit it), and then with Tall Girl closing. I would not have the PJ’s in the picture at the top if I didn’t go and get them at the sale, that is how little clothing I have. I am using the same shoes I had when I was fencing.

Enough said on that, because I think I know that those who understand realize I am grateful for friendships, for all the forms of giving, which include even reading and try as much as I can to reciprocate, because that is what friends do. I just know that I am going tonight and I am going to boxing on Monday, I just don’t know how. And I believe that in a week or so, I will be able to eat because I have the probiotic and oils I need. I believe that. Because if I don’t live, then I can’t do what I am meant to do, which is be there for as many people as I can, as many as my energy allows.

I die, I am brought back, I am wounded and bleed, I am in pain and struggle, spending so much energy to survive so that I might sit still and save the rest. I save it so I might spend my energy on others. Making sure that the others who feel the ‘alone’, others will have some way, some hope to get them through the winter. And I will help them find that. I will be with them. That is the other 99% of my life. Surviving on the edges. And sometimes it means eating ashes, like sitting on a toilet waiting for someone to be strong enough to lift you. And sometimes it means dragging yourself. And sometimes, it means getting a letter saying, ‘Your letter/gift/emails made the difference……’

Oh, and I WILL get to New Orleans.

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?

Me, thee and what's next.

I suppose I shouldn’t blog tired and in pain, but then I wouldn’t blog at all. I’ve talked to a few people and they seem to feel that people just don’t “get it.” So here it is, I do not have a chronic condition, which is one which is fairly stable or stays somewhat the same with dips and remissions.

I have a degenerative and terminal condition, I have several secondary conditions of which a couple if left untreated, which they seem to be, are terminal as well. I have several conditions which are conditions from the secondary conditions (tri-conditions?). Any of these conditions would be considered BY ITSELF, a lifetime disability. We don’t really talk about these because they are so unimportant to the main fact; that I continue to degenerate without a single remission. Yes, I have some drugs which hide these effects, or minimize them showing, but do not slow their degeneration.

I have reached the part where I have a path in front of me and I have to make choices, which is somewhat ironic because I have dementia. Remember that people with Alzheimer’s have dementia for a couple years sometimes before being found out. The woman that cries because no one will give her toast because she can’t remember eating the piece she had 2 minutes ago, is looking at people eating toast, making deductions (“They have toast, but I don’t!”) and acting on those deductions. Just because I am intelligent doesn’t mean there aren’t day I don’t I know what year it is, or day, or what city I am in or that I don’t need to be watched to ensure I don’t wander off.

I don’t know how long the path is, or where it goes but I know from what I’ve seen that it isn’t that great after the first bits, and probably has a few monsters along it. Linda and others are saying that I’ve lived enough of my life for other people and maybe it is time to live for me, for them. I think near the start of the year I asked for a family, a genuine family because mine has left me, and people responded. I guess some thought it was a bit like getting a bunny or goldfish because some have drifted off, their AB lives moving too fast to accommodate me, or they keep their distance, which is pretty much I expect from family to be honest. Some others, took that seriously. Some people wanted to be there for me, and have been.

I am alone, I am in pain, I am frightened. I have no medical assistance even to the level of painkillers which I got from a walk in clinic. I spend most of my day TRYING to get a better quality of life so telling me what I “should” be doing, unless you happen to work with Canadian paperwork (remember it took a YEAR, and several 14 page documents for them to determine I would never work again, am likely terminal and without income and due to a lapse of an agreement with the UK, would not be helped by the Canadian Government), please stop telling me how I can instantly improve my life. Because I am tired of failing everyone by not being exciting enough or not in pain enough, or not improving enough.

You want to help me, convince me that I am not alone. No, not that you will continue to watch while I die but that you will hold my head, that you will hold my hand, in one way another. I know that in the next few months with US thanksgiving and Xmas that people will be too busy to care anymore, they have their ‘real’ families, and real friends and the online film of Elizabeth’s Death just can’t compete. First off, I do not want a single Xmas card. I don’t keep Christmas. And if you need to WAIT in order to show you care about someone, then I have failed. I am in my own way ruthless because what I demand, not ask, demand from my friends and family is CHANGE. It is what I demand from myself. And if you have a habit of only showing that you give a damn about other people at Xmas, and you try to include me in that, it will be returned to sender. Because, what, you can’t look back over the last week and see a human being in emotional, physical and every other kind of anguish? There are two types of people, there are those who act (a.k.a. you change how you act!) or those who keep walking.

I started the postcard project because I wanted to believe that humans could care, would care about other people if they were just given a chance. Some, about 4 to 5% met that challenge. About 50% we never heard from. And because I don’t know which person NEEDS those postcards, I just keep sending. It isn’t my purpose to judge. Except now I don’t have the energy to continue. And I as I have said before HELP! HELP! HELP ME! MY GOD HELP ME!!!!! Apparently some might have missed the earlier notice. I haven’t received a single e-card or the like.

I guess, it isn’t just the Christians who say they will think of you and then stay away. I am in the equivalent of a burning building. And I’m terrified. Don’t you get that. I don’t have head control some days, I pass out frequently, I don’t have hand control. And I am here, past midnight, spending all the time since I got up writing to my friends. Because you are my friends right?

See, the point of this blog is that I am not only just like you, that I AM you – I got a disease that ANY of you could get, I am where any of you could be and I am being treated like ANY OF YOU COULD and will be. And how you treat me and the others who come across your radar, remember because that is how you will be treated. But now, while you are AB, your life, like other’s lives fare from the reality of where I am, will always be urgent. And yes, I know I come behind the milk you just ran out of, and the shopping list that needs to be done.

I can’t return all of the 20 emails, hate mails and demands every day. I try, but I can’t always, often. Sometimes because I am on the floor making the funny dance. Sometimes because I am staring into space. This is how my world ends. I have kept every promise that I have made and sent out a card to everyone who requested it; that will probably change soon, just out of physical need. We did, the three of us, 128 postcards in 9 days, and excluding one person received back, um, 4 (see 4%!). It cost us about $500. That’s the plain reality. I have no money, and I don’t spend it, what allowance I get I spend on others.

Okay, so my life isn’t how I planned it. I have a terminal disease just when I was going to be the bee’s knees, I had won award, I was doing not bad in national sports and hoped to move up to mid-rank in the US and Canada in my sport in the elite level. Sometimes you TAKE the road less traveled and sometimes it comes for you.

Sure, I would love to spend my time as an AB again, doing a full time job and having fun and reading 5-10 books a week, it was fun, it was exciting, it was disappointing, it was LIFE. Right now I have life too, but one that seems out of synch with everyone else. One where the people I get along the most with are those who are out of synch WITH me.

Do you know the only times I am truly at peace? It is when I am racing. Because there is simply no what anyone could reach me to save me in time if my heart went. And I have two choices, to push, and finish or to quit, and I won’t quit. So I either finish or die. Every time I go out, I know that is my choice: finish or die. What else is worth five days of pain so bad I can’t sleep for two days? But here, with everyone telling me what I need to be doing, what I should be doing, I am confused, I am often incapable, I am this girl. And that isn't a metaphor, I am THAT vulnerable, I am that pleading for someone to come and help me, because I need to be held. If not more.

I want a life where there is fun again. I haven’t really smiled in probably a week. I want to smile again, I want my life again. I want to LIVE and know the joy of living, and yes, dealing with the consequences. But I can’t do if I am spending so much time recording my best two hours in a week and taking photos and then thinly spreading them out over the rest of the week in my blogs. I can't LIVE if I am lying to everyone about okay my health is because they don’t want to deal with it. Okay, I am very ill, I can’t move by myself often. And that is with my pain masking drugs. I think Linda describes it on her blog. I wish it was a different way, I wish I bounded out of bed looking forward to a new day, a new day of action. Truth is I use dialogue as a way to focus against the pain and to stop myself from passing out. I want to be the impish girl who is trying to make the world conform to her, but I gave up that illusion long ago. Without help, and I mean people help, that isn’t going to happen. In fact, I can say, “Suck it up, Buttercup” and “I’m going to take back my life.” But the truth is that I am going to exercise tomorrow because I am trying to do something to extend my life a few weeks, because I made promises to people, that I would try until the end.

And I keep my word, as much as any human can. I will be here, still trying, waiting.

I guess the question is, where do I apply for someone to care about me, just me, for three full hours a week?