Time flies when indisposed. I’ve been overwhelmed by balancing the appointments and the health needed to do them.
Until my body started to fail, then it was all I could do to endure.
The worker was unable to hear my whispered calls for help, from my weak lungs. They set the fan to blow on me as I struggled to speak, to move, to do anything in my paralyzed body to let them know ‘I’m here, help!”
Time flows fast around the working eye, and I hear her shut the out door. I still couldn’t move anything except my eyelid. But I could feel the lung deterioration, progressing into diaphragm breakdown.
I held on. I endured. For an hour or more there was an explosion from my limbs and torso of nerve pain, perhaps it is what locked up the diaphragm, or sprained it.
To lie there, unable to move, with Linda having a work day, not home for three hours, that is just something to bear. But when the pain came, unable to moan, unable to move, and too terrified to close that eye and let go, then it was a fight. I would not fall silent into that dark night. I told myself that I must hold on. I hallucinated, thinking I was in a war, wounded, left behind.
I prayed. Mostly thank you’s for the people known, for the time I’ve been able to spend with Linda, and others. My life seemed very short now. All my plans and hopes of what to read or see, or emails I hoped to write or read seemed so far away. I thought about it all, “Darn it” I thought, and I sipped what air I could.
I did it. I held on until Linda came home, my lips moving over and over, ‘help me’, ‘help me.’
She leaned over and and I could see part of her face with my eye. She said, “Looks like you’ve had a TIA” (TIA is a mini stoke). I couldn’t see a way out or through this. I kept saying, ‘I love you’ until I was sure she had read my lips.
I didn’t want her ever doubting what I was most thankful for, or what mattered. I couldn't see a way out of this, a way back to the diminished life I am thankful to have.
Linda promised to watch over me and my breathing. So I risked sleeping, but how much I did of that, and how much was hallucinations due to the pain, and lack of oxygen is hard to tell. Linda noted that the breathing was shorter, shorter and erratic while I slept. So weak I could not drink. So Linda used a straw to suck up Gatorade then hold it with her finger on top before dripping the drops into my mouth. I needed the calories to try and get some basic function. Late hours but I still couldn’t move, drifting in and out. The bed was raised so I could swallow the mouthful of Gatorade, then lowered so I could breathe. My stomach was bloated from air swallowed in sleep. This air was squeezing my lungs, stopping them from inhaling.
I was able, then, to take the breakthrough pain pill with Linda putting it in my mouth, and dripping in Gatorade. My jawbone snapped out of the hinges by my ear, as it had for the last 10 hours. The pain had made most muscles locked in extreme tension.
Take your arm, make a fist and squeeze as hard as you can. Feel that tension in your muscle? Remember what a leg cramp feels like. Imagine a cramp going on for an hour. Impossible? Not if it is paralyzed that way, locked with muscles in full contraction for nine hours.
There are things we think are unbearable until they are endured. 'Longsuffering' the bible calls it. Thank goodness the Fentynal had been increased last week.
As the calories grew, things got a bit better, which also meant worse. The muscles started to drop, to release. My body relaxed, and it was like I was being pressed in medieval days, a board on me, with stones added. The only muscles that moved were the ones which twitched uncontrollably from the lactic acid which had built up.
I was faint, dizzy, but I could move my head, and I was starting to get parts of my body back. Linda put my legs, knees up, then swung me so they were off the bed. A tilt of the torso and I fell forward, Linda catching me, as we stagger, my one leg under control, to a cool room.
My hands and lips purple from lack of oxygen, but I started to be able to breath, a little deeper as I cooled down and every bit of calories. It took another three hours. Linda had been caring for four hours. I never would have gotten that care in a care home. But I slowly started to get better.
I couldn’t control my arms well, they would twitch and go in and out of spasm from the hours of muscle tension. I let my head loll on the headrest.
Linda put what we did down in the ‘solutions’ book, because we know neither why it work nor why my lungs declined so severely and so quickly. But it worked, and we hope if that happens, it will work again.
Please, never let it happen again.
I will start blogging regular as I can get out of bed. I’ll show pictures and write of Sakura-con and the trip as I have the ability and strength, if that is okay. I thought I ‘had’ to do the BIG Sakura-con blog, but now I’ll do ‘little posts’.
I worked today a little on my new birthday goal: some new disabled parking spaces in Victoria. There is no rule in Victoria, BC for blue badge spaces so no one makes them. The workers call for me. I talk to owners. I have more owners to go, then the council, and try to win over one parking spot at a time. Right now, there are several thousand street parking spots, and 28 disabled spots in Victoria. Every parking spot in every lot is a gift for all.
But that is another ‘small post’. I’m glad to here. Here is good, today better than yesterday.
Posts mit dem Label heart problems werden angezeigt. Alle Posts anzeigen
Posts mit dem Label heart problems werden angezeigt. Alle Posts anzeigen
Mittwoch, 11. Mai 2011
Freitag, 25. März 2011
Outdoor wheeling: Tales of the Neighborhood and Beacon Hill Park
When the rare alignment of sun, a ready wheelchair, and me dressed and with energy occur, I head outside even if I have to pay for it with an erratic heart for the next 36 hours.
For clarification, my heart problems which stopped fencing and started wheelchair use was POTS plus autonomic failure (postural hypo--tension) which meant my heart went above 170-240 beats per minute if I was upright even for a minute or two, plus spikes in blood pressure which caused tremors and mini-strokes. Now, I have a collection of upper and lower heart erratics, which are not only painful (for example, if my ventricles, the lower heart, don’t beat while the upper heart does, it is like water filling a balloon to bursting – where bursting is chest cavity bleeding: that is one of the eight to twelve erratics) but indicate that my autonomic system, the part which does the stuff you don’t have to think about, does not have the ability to exert itself AND maintain a steady heart beat for the rest of the day. The rule now is ‘1 day, 1 activity’ whether that is a shower, or an appointment, and even then, I can overexert myself. But I am trying to find boundaries which allow me to do something and go on to live another day.
Last weekend, a late sun through cleared clouds allowed me out to wheel a block or two with Cheryl and show her some of the ‘tales of our neighborhood’. I am sure your neighborhood has local characters and things of interest. Thankfully the guy with the long beard who used to be on the house by the corner and comment on my clothes, ass, and breasts has moved on to where-ever lechers with poor impulse control go. Across from us is a short closed off street which has old houses and this lovely garage, showing that all one need do is stay still long enough and you too can be on of William Hope Hodgson’s Fungus people.
It also shows a ‘Canadian VW camper van’. While parts for cars are regularly made on both sides of the US, Canada border (and now that our Canadian dollar is higher, expect Canadian plants to open up to exploit the cheap US labor: “They seem good chaps, by jove, but use some local lingo, and not the Queen’s English.”) in the 60’s, 70’s and 80’s there were particular colours of paint only used on Canadian sold Vehicles. Orange, yellow, and green all had separate shades, and the Canadian colours tended to look like faded photos from the 1950’s. One of the ways I could tell I was back in B.C., Canada from Los Angeles, were the car colours from my childhood everywhere with the yellows, browns, oranges, and odd green cars paint colours unseen south of the border. I have searched and searched but found no reason why Canadians were given different colours.
There are several squirrels that use the old 70’s apartments in the area as good places to store food, since they have large gardens. Here is one black squirrel with a red chest (??) who is busy rearranging the soil.
All squirrels seem to have OCD tendencies. With the green spaces taken over, the barn owls, I have not seen for a while, nor the family of raccoons, however, our fence is still part of the squirrel highway and Linda saw a bald eagle sunning a while ago. I have seen a hawk in the park (beacon Hill), and an owl, and there is supposed to be a heron there somewhere. Deer has been seen within four blocks of our apartment.
When we moved back to Victoria, and found out that our apartment rented while in the UK was in the area we wanted (lots of trees, open space, all in walking distance), but had been, until we moved in, a crack den. We looked around as we still wanted this area but more space and privacy. We saw a sign advertising for ‘ladies only’ rooms, and thought it might be a boarding house.
This is only a few doors up from our current apartment, while an actual boarding house was round the corner (which I called 'The Addam's House' due to number of Ambulance trips from there), in the heritage house they tore down to build the condos across from us. Once we answered the ad we found that it was not a female renting the room, but an older guy....who liked older women. There was a lack of seperate cooking or bathroom facilities. The rooms were furnished but the male older owner required that women NOT retreat into their rooms and shut the doors but that they must stay in common areas until at least 8:00 pm AND keep the door open to their room. This did not sound like a room for rent but an elderly voyeur who could not get out to peep in windows anymore so hired rooms to ‘ladies’ and required them not to close the door. Too weird, no privacy and we ended up finding our apartment. Five years later, the same sign, like a venus flytrap, has remained up the entire time. It also looks like some of the extra ‘Canada Green car paint’ was sold to do the trim on this house.
This week, another sunny day, the day after showering meant a trip out to Beacon Hill Park. It was very GREEN, and in the open sunny areas, where the mud flats reflected the heat, the Sakura blossoms of this cherry tree had opened.
The other trees were just starting to open.
In the shady grove, you can see two squirrels, a grey and a black on either sides of the tree.
The squirrels were out due to the sun but young and skittish, except for the older squirrels, who knew what the sound of a plastic bag meant. The older squirrels however would retreat up a bit into a bush and then slowly gnaw down the peanut.
The flowers on the sun side of the vegetation islands where the squirrels hid and played had opened.
Meanwhile, young squirrels mostly stayed in the shade of the grove, where the overhead canopy hid them from crows and owls.
Here they leapt and raced like hyperactive younger brothers. This also included getting distracted from peanuts and suddenly getting into fights with each other.
Here for example, one squirrel is stretching out, finally taking the peanut from my hand, and above him you can see a streak of brown in motion.
This picture is a still from a short film Linda took and up in the tree, just out of sight, is a black squirrel who took the peanuts and went up there to eat them. When this grey stretched and grabbed the peanut, the black squirrel threw the remaining shell and one of the two peanuts still inside down and nailed the grey, bouncing it off of his head. Oh, the lovely woodland creatures, and people say how they reflect the glory of god. It appears then that god is like a sibling on a long car trip who can’t stand to see anyone but themselves get any treats. I do remember one birthday party very young where the young girl spent most of the time running around trying to make sure none of the children her parents invited (that included me) got to eat or take any of all the lovely food. She ended up licking most of the icing off the cake before being carried out screaming by her parents. Squirrels can be like that.
After an hour, we headed back,
and I just now remembered that Linda promised me a butterscotch sundae for going out. She used the ‘oh dear, out of time’ routine to escape ice cream payment then, but I am definitely owed one ice cream from the Beacon Hill Drive in! I like going out as the sun and new growth is full of color and the young kids are brought out in droves, very cute – however, going to the park, even in a wheelchair to take pictures of small children is a good way to end up on the neighborhood watch list, and then I would be a local tale (the bad kind).
In Surrey, B.C., in first grade, the fifth graders, the ‘older’ kids, swore they was a body buried in the woods behind the school. And the one guy most adamant in telling us the tale said that whoever found the body FIRST would get a NEW BIKE. The ‘body behind the school’ is common (we had that in LA at the elementary school there), along with the woman with lots of cats being a witch, but since then I have never heard of a reward for a six year old finding the body. Maybe we were a little TOO starved for entertainment out there (a scar from childhood is from when I hid under the trucks at the plant across the way, raised my head up, cut myself on my crown, felt blood and then ran screaming home, shouting over and over to my mother, “HELP! HELP! I CUT MY HEAD OFF!”
For clarification, my heart problems which stopped fencing and started wheelchair use was POTS plus autonomic failure (postural hypo--tension) which meant my heart went above 170-240 beats per minute if I was upright even for a minute or two, plus spikes in blood pressure which caused tremors and mini-strokes. Now, I have a collection of upper and lower heart erratics, which are not only painful (for example, if my ventricles, the lower heart, don’t beat while the upper heart does, it is like water filling a balloon to bursting – where bursting is chest cavity bleeding: that is one of the eight to twelve erratics) but indicate that my autonomic system, the part which does the stuff you don’t have to think about, does not have the ability to exert itself AND maintain a steady heart beat for the rest of the day. The rule now is ‘1 day, 1 activity’ whether that is a shower, or an appointment, and even then, I can overexert myself. But I am trying to find boundaries which allow me to do something and go on to live another day.
Last weekend, a late sun through cleared clouds allowed me out to wheel a block or two with Cheryl and show her some of the ‘tales of our neighborhood’. I am sure your neighborhood has local characters and things of interest. Thankfully the guy with the long beard who used to be on the house by the corner and comment on my clothes, ass, and breasts has moved on to where-ever lechers with poor impulse control go. Across from us is a short closed off street which has old houses and this lovely garage, showing that all one need do is stay still long enough and you too can be on of William Hope Hodgson’s Fungus people.
It also shows a ‘Canadian VW camper van’. While parts for cars are regularly made on both sides of the US, Canada border (and now that our Canadian dollar is higher, expect Canadian plants to open up to exploit the cheap US labor: “They seem good chaps, by jove, but use some local lingo, and not the Queen’s English.”) in the 60’s, 70’s and 80’s there were particular colours of paint only used on Canadian sold Vehicles. Orange, yellow, and green all had separate shades, and the Canadian colours tended to look like faded photos from the 1950’s. One of the ways I could tell I was back in B.C., Canada from Los Angeles, were the car colours from my childhood everywhere with the yellows, browns, oranges, and odd green cars paint colours unseen south of the border. I have searched and searched but found no reason why Canadians were given different colours.There are several squirrels that use the old 70’s apartments in the area as good places to store food, since they have large gardens. Here is one black squirrel with a red chest (??) who is busy rearranging the soil.
All squirrels seem to have OCD tendencies. With the green spaces taken over, the barn owls, I have not seen for a while, nor the family of raccoons, however, our fence is still part of the squirrel highway and Linda saw a bald eagle sunning a while ago. I have seen a hawk in the park (beacon Hill), and an owl, and there is supposed to be a heron there somewhere. Deer has been seen within four blocks of our apartment.When we moved back to Victoria, and found out that our apartment rented while in the UK was in the area we wanted (lots of trees, open space, all in walking distance), but had been, until we moved in, a crack den. We looked around as we still wanted this area but more space and privacy. We saw a sign advertising for ‘ladies only’ rooms, and thought it might be a boarding house.
This is only a few doors up from our current apartment, while an actual boarding house was round the corner (which I called 'The Addam's House' due to number of Ambulance trips from there), in the heritage house they tore down to build the condos across from us. Once we answered the ad we found that it was not a female renting the room, but an older guy....who liked older women. There was a lack of seperate cooking or bathroom facilities. The rooms were furnished but the male older owner required that women NOT retreat into their rooms and shut the doors but that they must stay in common areas until at least 8:00 pm AND keep the door open to their room. This did not sound like a room for rent but an elderly voyeur who could not get out to peep in windows anymore so hired rooms to ‘ladies’ and required them not to close the door. Too weird, no privacy and we ended up finding our apartment. Five years later, the same sign, like a venus flytrap, has remained up the entire time. It also looks like some of the extra ‘Canada Green car paint’ was sold to do the trim on this house.This week, another sunny day, the day after showering meant a trip out to Beacon Hill Park. It was very GREEN, and in the open sunny areas, where the mud flats reflected the heat, the Sakura blossoms of this cherry tree had opened.
The other trees were just starting to open.
In the shady grove, you can see two squirrels, a grey and a black on either sides of the tree.
The squirrels were out due to the sun but young and skittish, except for the older squirrels, who knew what the sound of a plastic bag meant. The older squirrels however would retreat up a bit into a bush and then slowly gnaw down the peanut.
The flowers on the sun side of the vegetation islands where the squirrels hid and played had opened.
Meanwhile, young squirrels mostly stayed in the shade of the grove, where the overhead canopy hid them from crows and owls.
Here they leapt and raced like hyperactive younger brothers. This also included getting distracted from peanuts and suddenly getting into fights with each other.Here for example, one squirrel is stretching out, finally taking the peanut from my hand, and above him you can see a streak of brown in motion.
This picture is a still from a short film Linda took and up in the tree, just out of sight, is a black squirrel who took the peanuts and went up there to eat them. When this grey stretched and grabbed the peanut, the black squirrel threw the remaining shell and one of the two peanuts still inside down and nailed the grey, bouncing it off of his head. Oh, the lovely woodland creatures, and people say how they reflect the glory of god. It appears then that god is like a sibling on a long car trip who can’t stand to see anyone but themselves get any treats. I do remember one birthday party very young where the young girl spent most of the time running around trying to make sure none of the children her parents invited (that included me) got to eat or take any of all the lovely food. She ended up licking most of the icing off the cake before being carried out screaming by her parents. Squirrels can be like that.After an hour, we headed back,
and I just now remembered that Linda promised me a butterscotch sundae for going out. She used the ‘oh dear, out of time’ routine to escape ice cream payment then, but I am definitely owed one ice cream from the Beacon Hill Drive in! I like going out as the sun and new growth is full of color and the young kids are brought out in droves, very cute – however, going to the park, even in a wheelchair to take pictures of small children is a good way to end up on the neighborhood watch list, and then I would be a local tale (the bad kind).In Surrey, B.C., in first grade, the fifth graders, the ‘older’ kids, swore they was a body buried in the woods behind the school. And the one guy most adamant in telling us the tale said that whoever found the body FIRST would get a NEW BIKE. The ‘body behind the school’ is common (we had that in LA at the elementary school there), along with the woman with lots of cats being a witch, but since then I have never heard of a reward for a six year old finding the body. Maybe we were a little TOO starved for entertainment out there (a scar from childhood is from when I hid under the trucks at the plant across the way, raised my head up, cut myself on my crown, felt blood and then ran screaming home, shouting over and over to my mother, “HELP! HELP! I CUT MY HEAD OFF!”
Freitag, 9. Oktober 2009
Hawaii Adventure 09 Day 5: Life Threatening? Volcano 1 Beth 0
I have been feeling poorly more and more. Admittedly, we did in 2 days in Honolulu and the Island (going to the lookout, the temple, waikiki beach, the town, the mall, the 61 and 63 drive) and already have done 3-4 big things on the Big Island, more in the first two days than most people visiting see in a week.
So I was sleeping four hours a night so I could blog each night. So when I started bleeding from my nose, I ignored it. The next day I had blood from my nose and my mouth. This morning, blood from my mouth and nose and on my pillow too. But those did didn’t stop me from pushing on to a FULL day where visiting Waipio Valley yesterday, the scenic drive of one lane bridges and seeing old plantation towns besides getting postcard project supplies (like into three figures!). After all, this was IT! The big trip to two Hawaiian Islands. What did I have to look forward to but a winter of frostbite and staring at a wall in my apartment? I had a few days of this before months of discussions with care managers on how exactly if I learned how to make a hospital corner bed at camp, most of my care workers couldn’t make my bed?
Besides, I wasn’t coming back, right? Well, except for that trip to New Orleans maybe.
They emailed me today: I missed the breast cancer 5K, it happened while I was over here.
So today was supposed to be a low key ‘Scouting Trip’ which means I ignored the sign coming into the Volcano National Park saying, “Warning: Air Quality Hazardous.” I kept feeling nauseous but pushed on, it would be an hour tops! (it was 6-7 hours). I always push on, until I feel like I am about to fall and never get up. I have feeling that a lot the last couple days.
The Crater view of Kilauea (Volcano’s Name) was amazing. It erupted a recent thanksgiving, shooting lava hundreds of feet in the air before cooling to a lake of solid lava..or so it seems.
Beneath this is the lava which runs down the lava tubes to erupt into the sea. At night you can see the glow of the lava as the steam plume of Sulphur and other gases continue to pour upwards.
Over half of Crater Road was closed due to the toxic nature of the gas, and the visitor center, where we stopped, was the edge of the closed road due to toxic fumes. As long as the wind blew we were fine, but if it stopped and the plumes drifted, then it was a different story.
See that is what I would have know IF I had read the material. Instead, I was all “Hound of the Baskervilles” and dying to get out into this fog that they had inconveniently roped off.
But the Park service puts up these nice warnings about how the fumes can be life threatening: “Do NOT enter this area if you are a person at risk: heart problems, respiratory problems, pregnant or children.” You can see me doing the ‘Phantom of the Opera’ (the black and white silent version) in front of the after I said, “Well, I’m not pregnant.”
Earlier, Cheryl had checked me over because I had to stop for a while in the van because I was feeling so bad. She found that my heart was extremely erratic. After a brief rest, Onward!
Here we are at the edge of the rim. No problem.
But, Beth asks herself, is this DRAMATIC enough a picture? No! I needed a picture from when the wind stalled and the plume would stall and drift over a corner.
So while Linda and Cheryl stayed at a safe distance off I roll.
And roll
And roll...
Until Linda has to Zoom on me but still you can barely can see me giving the fist of victory!
Victory over what exactly? I have met the volcano and won!?
We crossed over to see the individual sulphur holes, again passing a very large sign saying that people like me shouldn’t go. I said, “What? How can I have a breathing problem when I have my prosthetic lung here?”
Here are two roped off potholes, you can see the accumulation of various acids and minerals as well as the plumes coming up with the sulphur, straight out of cracks down at the lava level.
It was very warm. I asked Linda and Cheryl for a picture in the sulphur pothole area. Here they are, and having fun.
Also quite a distance from the fumes.
I was having fun, of sorts, also. I asked Linda to hold my camera while I rolled along the fence of the pothole area,
and again, not to take a picture until the plume was completely covering me (it was oh so mysterious and very Edwardian!).
With oxygen behind on the back I head off alone.
By this time you may wonder, “Is Beth THAT brain damaged?” Well yeah but not about this. I don’t have any excuse except that that I had done so many things that people said I couldn’t do, I was just barely surviving a sudden heat wave which made using our house in the day a death trap. So what could a bit of mysterious fog do? I mean, they put up those signs just to cover themselves don’t they? Just because a few people have died at this volcano from the plume (I didn’t know that at the time, honest) is just juice to go further in. To me, whether it was sulphur and acid or dry ice, what difference? A LOT it turned ou
I am now raising both arms in a victory symbol, but you can barely see me.
I was pretty punked and had to be helped back into the van. In the van we noticed that my hands were blue, like BLUE, not the fingernails but the palms. Plus I had blue lips. I went, “What?” and looked in the mirror and it was true, both of them completely blue. But….but….but….I was ON oxygen, what was I supposed to do now?
Well, I could have headed off and rested BUT at the visitor center they said that at night the plume glowed from the magma below. And it was only an hour until dark. So we looked at the gift shop and I went to the bathroom and tried to stop passing out. Even now, after sleeping and 12 hours later, I can barely move and if I move my head or close my eyes, around the world goes. But I hung on until night. And the plume DID glow, but too faintly for my camera to pick up. Just as we were giving up there was a flash of light! It was a thunderstorm erupting behind the plume and I happened to be taking a mini film as the sky is erupted in electrical light showing the plume in the fore.
It was pretty cool. There were a few more lightning discharges but we couldn’t get them on film. And soon, feeling very punk we headed home.
Guess what, I AM human. And being human I am one of those people who the big Yellow Signs are talking to. I am not saying that I can't go see a volcano in action. But do I need to do thing so dangerous that the healthy people who are not lung and heart damaged don't want to even think of doing them? I could use this new word I looked up: Caution
I told Linda the truth while I was in the bathroom. And she told me the truth: that the previous day, she was a second or two from starting mouth to mouth. Bu I was thinking not once but several times to tell them to take me to the hospital (this was AFTER the valley tour, and the town tour, and the shopping). And that now, I felt far worse. I felt in a jam, that if I didn’t push myself to see the BIG things, like a volcano or the stars, then what was the point of coming to be an hour drive from one? I would be letting them, the AB’s down. But right now, I said, if there was a coffin nearby, I would crawl into it just to lie down, I felt so bad.
Back at home, even after a sleep, I was still in bad shape. My blood pressure and heart beat erratic while my reserves were zero. Cheryl looked in my ears with her little device and my left ear, which was mostly deaf, had burst from a blood pressure spike and there was blood behind the ear and down in the canal behind it. Sigh. So a slower day tomorrow. Maybe going to a beach, or if I can go in the car, seeing a waterfall and then back to lie down. I feel a bit of a failure but looking back on the pictures also a BLOOMING IDIOT! Turns out those signs aren’t a joke. I guess I should make educated choices instead of just ignoring them. I am not the same Elizabeth of a few months ago, I don’t have the reserves, I am not that strong, I HAVE deteriorated in several areas central to my health.
But the visit isn’t over yet. And if I am up to it, one of the rangers think I can manage the wheelchair over the lava path to see it drop into the sea. For that, I would drag myself on the ground.
I am not sure what I fear more, letting Linda, Cheryl and my readers down or pushing myself so much that I am dying in plain sight and everyone is used to it. That feeling so bad I can’t eat (I am losing a pound of weight a day) is just what I am. But I better figure it out soon.
So I was sleeping four hours a night so I could blog each night. So when I started bleeding from my nose, I ignored it. The next day I had blood from my nose and my mouth. This morning, blood from my mouth and nose and on my pillow too. But those did didn’t stop me from pushing on to a FULL day where visiting Waipio Valley yesterday, the scenic drive of one lane bridges and seeing old plantation towns besides getting postcard project supplies (like into three figures!). After all, this was IT! The big trip to two Hawaiian Islands. What did I have to look forward to but a winter of frostbite and staring at a wall in my apartment? I had a few days of this before months of discussions with care managers on how exactly if I learned how to make a hospital corner bed at camp, most of my care workers couldn’t make my bed?
Besides, I wasn’t coming back, right? Well, except for that trip to New Orleans maybe.
They emailed me today: I missed the breast cancer 5K, it happened while I was over here.
So today was supposed to be a low key ‘Scouting Trip’ which means I ignored the sign coming into the Volcano National Park saying, “Warning: Air Quality Hazardous.” I kept feeling nauseous but pushed on, it would be an hour tops! (it was 6-7 hours). I always push on, until I feel like I am about to fall and never get up. I have feeling that a lot the last couple days.
The Crater view of Kilauea (Volcano’s Name) was amazing. It erupted a recent thanksgiving, shooting lava hundreds of feet in the air before cooling to a lake of solid lava..or so it seems.
Beneath this is the lava which runs down the lava tubes to erupt into the sea. At night you can see the glow of the lava as the steam plume of Sulphur and other gases continue to pour upwards.
Over half of Crater Road was closed due to the toxic nature of the gas, and the visitor center, where we stopped, was the edge of the closed road due to toxic fumes. As long as the wind blew we were fine, but if it stopped and the plumes drifted, then it was a different story.See that is what I would have know IF I had read the material. Instead, I was all “Hound of the Baskervilles” and dying to get out into this fog that they had inconveniently roped off.
Visitor Alert - Kilauea is currently emitting elevated levels of sulphur dioxide gas and an ash-laden fume cloud from a new vent within Halema`uma`u crater.Plus there are acid droplets in the ash plume, which is why all the plants which are directly in the path of plumes are dead or dying.
So2 is a hidden volcanic hazard. Exposure to the invisible gas can aggravate pre-existing heart and breathing problems such as asthma. Elevated volcanic gas levels are dangerous to everyone.
But the Park service puts up these nice warnings about how the fumes can be life threatening: “Do NOT enter this area if you are a person at risk: heart problems, respiratory problems, pregnant or children.” You can see me doing the ‘Phantom of the Opera’ (the black and white silent version) in front of the after I said, “Well, I’m not pregnant.”
Earlier, Cheryl had checked me over because I had to stop for a while in the van because I was feeling so bad. She found that my heart was extremely erratic. After a brief rest, Onward!Here we are at the edge of the rim. No problem.
But, Beth asks herself, is this DRAMATIC enough a picture? No! I needed a picture from when the wind stalled and the plume would stall and drift over a corner.
So while Linda and Cheryl stayed at a safe distance off I roll.And roll
And roll...
Until Linda has to Zoom on me but still you can barely can see me giving the fist of victory!
Victory over what exactly? I have met the volcano and won!?We crossed over to see the individual sulphur holes, again passing a very large sign saying that people like me shouldn’t go. I said, “What? How can I have a breathing problem when I have my prosthetic lung here?”
Here are two roped off potholes, you can see the accumulation of various acids and minerals as well as the plumes coming up with the sulphur, straight out of cracks down at the lava level.
It was very warm. I asked Linda and Cheryl for a picture in the sulphur pothole area. Here they are, and having fun.
Also quite a distance from the fumes.I was having fun, of sorts, also. I asked Linda to hold my camera while I rolled along the fence of the pothole area,
and again, not to take a picture until the plume was completely covering me (it was oh so mysterious and very Edwardian!).With oxygen behind on the back I head off alone.
By this time you may wonder, “Is Beth THAT brain damaged?” Well yeah but not about this. I don’t have any excuse except that that I had done so many things that people said I couldn’t do, I was just barely surviving a sudden heat wave which made using our house in the day a death trap. So what could a bit of mysterious fog do? I mean, they put up those signs just to cover themselves don’t they? Just because a few people have died at this volcano from the plume (I didn’t know that at the time, honest) is just juice to go further in. To me, whether it was sulphur and acid or dry ice, what difference? A LOT it turned ou
I am now raising both arms in a victory symbol, but you can barely see me.
I was pretty punked and had to be helped back into the van. In the van we noticed that my hands were blue, like BLUE, not the fingernails but the palms. Plus I had blue lips. I went, “What?” and looked in the mirror and it was true, both of them completely blue. But….but….but….I was ON oxygen, what was I supposed to do now?Well, I could have headed off and rested BUT at the visitor center they said that at night the plume glowed from the magma below. And it was only an hour until dark. So we looked at the gift shop and I went to the bathroom and tried to stop passing out. Even now, after sleeping and 12 hours later, I can barely move and if I move my head or close my eyes, around the world goes. But I hung on until night. And the plume DID glow, but too faintly for my camera to pick up. Just as we were giving up there was a flash of light! It was a thunderstorm erupting behind the plume and I happened to be taking a mini film as the sky is erupted in electrical light showing the plume in the fore.
It was pretty cool. There were a few more lightning discharges but we couldn’t get them on film. And soon, feeling very punk we headed home.Guess what, I AM human. And being human I am one of those people who the big Yellow Signs are talking to. I am not saying that I can't go see a volcano in action. But do I need to do thing so dangerous that the healthy people who are not lung and heart damaged don't want to even think of doing them? I could use this new word I looked up: Caution
I told Linda the truth while I was in the bathroom. And she told me the truth: that the previous day, she was a second or two from starting mouth to mouth. Bu I was thinking not once but several times to tell them to take me to the hospital (this was AFTER the valley tour, and the town tour, and the shopping). And that now, I felt far worse. I felt in a jam, that if I didn’t push myself to see the BIG things, like a volcano or the stars, then what was the point of coming to be an hour drive from one? I would be letting them, the AB’s down. But right now, I said, if there was a coffin nearby, I would crawl into it just to lie down, I felt so bad.
Back at home, even after a sleep, I was still in bad shape. My blood pressure and heart beat erratic while my reserves were zero. Cheryl looked in my ears with her little device and my left ear, which was mostly deaf, had burst from a blood pressure spike and there was blood behind the ear and down in the canal behind it. Sigh. So a slower day tomorrow. Maybe going to a beach, or if I can go in the car, seeing a waterfall and then back to lie down. I feel a bit of a failure but looking back on the pictures also a BLOOMING IDIOT! Turns out those signs aren’t a joke. I guess I should make educated choices instead of just ignoring them. I am not the same Elizabeth of a few months ago, I don’t have the reserves, I am not that strong, I HAVE deteriorated in several areas central to my health.
But the visit isn’t over yet. And if I am up to it, one of the rangers think I can manage the wheelchair over the lava path to see it drop into the sea. For that, I would drag myself on the ground.
I am not sure what I fear more, letting Linda, Cheryl and my readers down or pushing myself so much that I am dying in plain sight and everyone is used to it. That feeling so bad I can’t eat (I am losing a pound of weight a day) is just what I am. But I better figure it out soon.
Donnerstag, 8. Januar 2009
I'm ill. I keep on as I have and I die. So what now?
Okay, let me try again. I am sick. See, I’ve never had a problem with accepting that I have limitations. I have had limitations all my life and my first thought in both Wheelchair Boxing and Badminton was “Okay, this is a BIT more to overcome, but think Beth, how are you going to wipe the floor with them?”
I wanted a PLAN, ideas on how to train MY way, do things MY way. And so I had some conditions, fine, I would research and then figure it out MY way. So I have never said I didn’t have conditions, like Raynaud’s. In Seattle at REI, after this woman went on about her life is “DIFFERENT” because she has this CONDITION called, and I finished the sentence, “Raynauds.” And I pulled off my gloves which got a “OH MY GOD!” Hey, what, they don’t make purple jellyfish looking hands where you come from?
She then told me, in all seriousness that I have to be ‘CAREFUL’ because I could get frostbite. I pointed to my finger which has the worst circulation and said, “You mean like this here.” And she just sort of stared at the finger and me. “It’s frostbite, that white bit, turning grey, that’s frostbite.”
She was doing the “But, but,” and I was like, I know and that is why I wear thick gloves INSIDE your store. I went out today for an errand and had frostbite for an hour, ow. She was also the one who after another “OMG!” when I asked if her feet or hands turned black, leaned over and asked, “Are you….wheelchair bound?” Um, no lady, this is my titanium leisure chair.
Doctors have no problem with the fact that I am very, very ill with many diseases. I think there is a file with about 8 to 12 diseases listed on there. They don’t think I am making things up. The problem is that I am a ‘complicated’ case which means they would have to take this thing called ‘responsibility’ and so, “Nope, not my inch!” No, they don’t deny I am terminal, not even the top neurologist would commit to saying I would be alive in a couple years. I have an unknown autoimmune disease doing things which are sort of strange and ideopathic, but which produces autonomic failure. There are only four known direct causes of autonomic failure (there are indirect causes like, when your entire lungs fill with cancer, it causes autonomic failure of your heart due to overloading the system). Of the four, I don’t have one called POTS, so that eliminated leaves the fast terminal one, the SUPER fast terminal disease or the delayed terminal disease. I also have other autoimmune disease and other idiopathic (doctor speak for “What the FUCK? I have no idea!”) conditions/disease presentations which could cause my death.
So I am dying. But to me, being told that was like playing able bodied people tennis in a wheelchair and winning; if I pull off living (winning!) then I am kick ASS! So while I do have a problem being terminal, at least I can be busy: plotting my decline, coming up with plans, trying different ideas. Only now, I am tested, there are blood tests ordered but no plan for treatment, just making sure different doctors don’t get sued. I can’t get a specialist or a GP to prescribe me seizure medication so they give it to me at a walk in clinic, pain meds over the phone. Between my life and “cover thy ass” we know what comes first. Or as one medical person said, “Exactly how HIGH does the stack of dead bodies outside of Victoria Island Health Authority (VIHA) have to get before they DO something?” Currently, I can’t hire my own care workers because the grant, CISL, hasn’t been raised for inflation or anything else in over a decade. 19 year olds can earn the same per hour sitting in the six week course at Beacon which will let them catheterize me, decide the use of life and death medication and use my feeding tube; once they START, I can only pay 55% of what they earn at Beacon, whether they are good or bad. VIHA, after a promise to raise CISL and nine months of negotiation now says they haven’t had enough ‘complaints’ to make them believe the pay was too low. Let’s see, trained medical personnel on CISL get $11, people serving donuts in this town get $14.55, heath AND dental. I guess that disabled woman who smuggled an illegal alien to SLEEP in her closet to try and get home care under the CISL grand budget wasn’t enough PROOF (real case!).
Except now I am ill, so ill, I can't be busy anymore with planning on beating dying. Linda over on her blog, A Girl's Gotta Fly, has just posted about the oxygen I am on, thanks to you. And other things (I can't read her blog till she gives me permission in case it is medical and stuff, but YOU can!) about our life. Please read and comment (after reading ME of course!), as it is hard for her to write these things, hard for her to have to open up, and she needs encouragement too.
So here we are, take two: I am sick. I may say I feel bad today, or that I have this disease or that I am dying but I don’t admit that I am sick.
I will always be sick. I have worked the last three hours in extreme pain with triple my pain and heart medication. That’s because I went out today after my ‘fun with electricity’ yesterday. I have crashed to earth. "Mission Control: This is Elizabeth McClung and I am going down."
There is no plan, I almost died just over a week ago, I couldn’t sit up unassisted yesterday and I don’t know if I am going to the hospital tonight. I am sick. And tomorrow I will be sick, and the next day, and the next. There is no beating this. I am living in overtime. And I don’t have a game plan.
Now on to part II: I need help. I am fragile: I had two breakdowns yesterday.
I can’t just throw myself into something because….I am sick. It is snowing or raining outside, I get frostbite in a few minutes and I am sick. Currently I am back to believing that I am non-human.
I want to be a great friend, I want to visit every blog, I want to know about every life, and I want to empathize with you, listen to you, solve your problems, but I CAN’T. And I don’t know how to do that and not be so BAD, that it makes me want to claw my face. I need help, and I need caring, and I need to get better IN the head, so that I can regulate my body and live longer. Because I am going to Hawaii in April/May, I am going to start trying to sell stuff to do that and anyone who wants to come is invited (see, that is my ‘As long as I have a plan, and never sit still, the pain is just ‘training pain’ coming back to try and take over’).
The problem about asking for help, is that it is a lot like having a high school crush,
you like this girl, you moon about forever, thinking you are sort of subtle while really everyone knows (or all the girls know, the guys are too busy hitting each over the head to figure out why girl X just burst into tears). The problem is that there is that moment where you have to say it, “I like you!” And then see what happens. And my problem is that I am saying, “I need help” at a time when people are depressed because they are post-Xmas blues, they are depressed because of recession or reality TV. I don’t know why. And I am not asking to be SAVED, to have someone rescue me. I am saying, I am out here in the wilderness, and I don’t know what to do.
Normally, I would take some time off and over the next nine months or year come back to full strength. I don’t have that. So instead of keeping between me and my therapist, because I don't have the TIME, I AM dying, so I posted about it, spewed it all over the net and now I am saying, “Yeah, I am kind of screwed up, can you help?” Please, PLEASE, don’t do what certain parental figures often do and tell me what I should do, or should have done, or if I had done I wouldn’t be in this mess. AHHHH!
So, lets say that she takes the gift of chocolate, then what?
I don’t know that part either (If no one does then I guess I pretty screwed!). Cheryl is pretty busy taking care of Linda and dealing with the medicos. And when I, the avenging angel of death, am having hissy fits and meltdowns every six hours, well, that’s not pretty, and that’s not something I want to last (and with my fragile condition, it won't, I'll be in the hospital by weeks' end). Now see, in my OLD mode of operating, I would take my life, put it on the line, call out death and have a duel,
because that is the way I am. Someone said to me, about how impressed they were at what I did but to risk my LIFE? I was sort of puzzled, because isn’t that the point? Yes, if I go to Hawaii, I risk my life. Going to Seattle risked my life. We went to Tim Horton’s and had a little incident and Linda had to use her ‘command’ voice to stop people from getting an ambulance. If I want to LIVE, I need to risk my life.
So what does this new life look like? I think I am supposed to rest and then find out if that makes me feel better. I am out here, no net, no back up, but also no clue. See the problem is that here are a few things I don’t have: desire (I desire very little though I found a new manga and put it on my wish list – it won a REALLY big award), lust, anticipation, looking ahead, joy, innocence, peace, contentment, rest, relaxation. So how do I get those? I think Linda has this idea that I will return to my childhood when I had a dog and spend time in the flowers all full of joy and innocence.
And while I would like that, when you have to sleep twice a day and have the nightmares I do, it is hard to wake up and have that innocence. Or with the chest pain, to have this idea of ‘rest’ that doesn’t include the fear of being in hospital with a LOT of tubes coming out of me. I proposed MY idea of what I should do, which is to train minions like crows (they follow me too!) to like go and attack people. While I look on from my tower.
Linda says this is disturbed. I tell her that I AM disturbed so that makes it okay. She says no.
I was to have the exuberance I used to have, but I can’t because everything I do hurts, everything I do damages me. I want to be here, on a dog sled,
fulfilling one of my life dreams, doing the Alaska 1000 mile dogsled race (won by a woman for YEARS! YAH!). That dream isn’t going to happen now but I want that look on my face again, the whole, “Oh yeah, I’m going to get them!” I don’t want to live off memories which are quickly disappearing (I remember none of the 10K’s or most activities of this year, even if I still have unhealed wounds from them), but some new thing to be excited about. But I can’t right now, because I am broken. It is just that which I am trying to fix. So I look like this instead, 
looking ahead, fearful, uncertain, sad, wondering if all good things are behind me.
I want to be the person who is out finding joy in falling stars, who has true innocence renewed.
But I need help. I do need a plan, a program. Right now all I have is that I am going to try out doing some small shopping online, trying to find something on Amazon.com that isn’t for the Postcard Project, that isn’t a gift for this person or that person, but something just for ME. Can I even buy something or use a gift card just for me? I don’t know, but if I can find that feeling, that desire, that joy, even anticipation, then maybe I can come back, back to normal. Which isn’t perfect, it is about having things go wrong, I mean, I do have a lot of diseases, and there will be little home problems (I wish I had this one!), 
but to be stable mentally. Sure, I might be a bit off in the head or prone to OCD, or overly emotional due to the autoimmune attacking parts of my brain, and due to seizure activity, but I will think that I am part of the human race.
I went out today because I made a promise and I keep my promises (if I can only remember), to get a certain comic for a reader here, Yukataonastick. So I was in a comic book store and I talked. Linda said I am the greatest liar when I pretend, for 20 minutes that I am perfectly fine, then pay for it, for the next six hours or more. Well, I was doing fine and talking to a girl who I had an inkling might be on our ‘team’ as it were, when she talked about playing rugby in high school and how great that was as when you all fell down she got to touch lots of breasts and no one suspected a thing. Dudes, take note, that kind of statement is a sign you are with or are chatting up a lesbian or bisexual, NOT that you have similar interests (though you do!). Well, after some more talk and getting the comics, she says suddenly to me, “Your tit is showing!” Now, I was wearing a new top from Torrid or Hot Topic and I had put the jacket half down to give my breasts some ample chance to show off but wha? I looked down, no, the top is still covering my bra which is covering my breasts. This girl leans over, as I wonder if this is my discovery of a third nipple and will it lactate, and adjusts…..my necklace. Apparently the part where I attach it had come around to the front, so she adjusted the necklace for me. I asked her if that was a technical jeweler term and she said it was, which means it WASN’T the most blatant lesbian come-on line of all time. But then again, she did lean over and adjust the necklace. I have to admit, worrying where my clasp is on my necklace when I have chunks of hair missing on my head and look like I wheeled in from a nuclear disaster tends to be low on my list.
So, let’s review okay? This is who I see myself as.
Yeah, things get to the worst, and I will take you on. Yes, I am kick ass. I don't care about the odds, I am the one who is going to meet you and take you on because all you can do is give me pain and that heals, in fact, I’ve been hurt so often I heal abnormally quick. Or I did….. But the reality is that I am not a person who can take on life that way, or problems, and so I am this person, 
not sure which way to go, a little scared, in a place which seems a lot more confusing. I would like to find a way to figure out how to restart. Which pain is making difficult, so if you have like some MORPHINE and don’t mind breaking rules that might get you in jail, please send it to me (if it crosses state lines it is a FEDERAL CRIME – big time!). I want to look for a while like this
, resting, calm, caring but also willing to be cared for(yes, I get the fox ears too, and the cute pet, why not!).
How does someone who is 6’4” and usually weighs 200 lbs or more (that’s muscle buddy!) and picks up 100 lbs easily go to being a person who is well, weak. I’m not girly, but I am weak, I am model thin, I am model light, I CAN be carried around, including my chair by a guy or two. I can be carried back into my chair once I fall out by one person. I am not used to that. That’s what I DO, not what happens to me. How do I ask for help and emotional support, and help in keeping myself believing I am human when I am the one who is used to helping others, BECAUSE I have ALWAYS known I am not human, that I live only to save those from ever becoming like me. I want to be there, because how can I ever want anyone to be me? And I have to let that go a little and find peace. How? Who will help me?
And then, as I find a new way, a new path, to surviving each day as someone who IS ill, who is never going to get better for the most part, who is always going to get a little bit worse. But that doesn’t mean I can’t find my own strength, or that I can learn to lean on the strength of others. I just need to let go of doing it all myself. I hope, I can find the peace, the anticipation, the excitement, the joy inside me, and use NOT my strength, to make myself ill proving I CAN do X or Y, but to accept the strength of those waiting to join me
(like the picture). So is that it, is EFM dead? No. EFM has learned there is more than one strategy to fencing, you don’t ALWAYS have to charge! Sometimes, you wait until they come to you, let them do the heavy lifting before you act. Am I going to risk my life to LIVE? Hell yes! Am I going to risk my life just because it is possible? Yeah, I am probably going to do that too. And sometimes, I might go and do things that aren’t particularly smart. Just this time, I have to realize, if I don’t learn the R word (relax, rest, etc), then I will push myself right into a crematorium. Yes, do the thing and then rest as long as is needed to get up, with little advances and help from others, and start again. Because life IS the only game in town and no way I am getting sent off permanently because I am too thick to change. I just need some help.
I wanted a PLAN, ideas on how to train MY way, do things MY way. And so I had some conditions, fine, I would research and then figure it out MY way. So I have never said I didn’t have conditions, like Raynaud’s. In Seattle at REI, after this woman went on about her life is “DIFFERENT” because she has this CONDITION called, and I finished the sentence, “Raynauds.” And I pulled off my gloves which got a “OH MY GOD!” Hey, what, they don’t make purple jellyfish looking hands where you come from?
She then told me, in all seriousness that I have to be ‘CAREFUL’ because I could get frostbite. I pointed to my finger which has the worst circulation and said, “You mean like this here.” And she just sort of stared at the finger and me. “It’s frostbite, that white bit, turning grey, that’s frostbite.”
She was doing the “But, but,” and I was like, I know and that is why I wear thick gloves INSIDE your store. I went out today for an errand and had frostbite for an hour, ow. She was also the one who after another “OMG!” when I asked if her feet or hands turned black, leaned over and asked, “Are you….wheelchair bound?” Um, no lady, this is my titanium leisure chair.
Doctors have no problem with the fact that I am very, very ill with many diseases. I think there is a file with about 8 to 12 diseases listed on there. They don’t think I am making things up. The problem is that I am a ‘complicated’ case which means they would have to take this thing called ‘responsibility’ and so, “Nope, not my inch!” No, they don’t deny I am terminal, not even the top neurologist would commit to saying I would be alive in a couple years. I have an unknown autoimmune disease doing things which are sort of strange and ideopathic, but which produces autonomic failure. There are only four known direct causes of autonomic failure (there are indirect causes like, when your entire lungs fill with cancer, it causes autonomic failure of your heart due to overloading the system). Of the four, I don’t have one called POTS, so that eliminated leaves the fast terminal one, the SUPER fast terminal disease or the delayed terminal disease. I also have other autoimmune disease and other idiopathic (doctor speak for “What the FUCK? I have no idea!”) conditions/disease presentations which could cause my death.
So I am dying. But to me, being told that was like playing able bodied people tennis in a wheelchair and winning; if I pull off living (winning!) then I am kick ASS! So while I do have a problem being terminal, at least I can be busy: plotting my decline, coming up with plans, trying different ideas. Only now, I am tested, there are blood tests ordered but no plan for treatment, just making sure different doctors don’t get sued. I can’t get a specialist or a GP to prescribe me seizure medication so they give it to me at a walk in clinic, pain meds over the phone. Between my life and “cover thy ass” we know what comes first. Or as one medical person said, “Exactly how HIGH does the stack of dead bodies outside of Victoria Island Health Authority (VIHA) have to get before they DO something?” Currently, I can’t hire my own care workers because the grant, CISL, hasn’t been raised for inflation or anything else in over a decade. 19 year olds can earn the same per hour sitting in the six week course at Beacon which will let them catheterize me, decide the use of life and death medication and use my feeding tube; once they START, I can only pay 55% of what they earn at Beacon, whether they are good or bad. VIHA, after a promise to raise CISL and nine months of negotiation now says they haven’t had enough ‘complaints’ to make them believe the pay was too low. Let’s see, trained medical personnel on CISL get $11, people serving donuts in this town get $14.55, heath AND dental. I guess that disabled woman who smuggled an illegal alien to SLEEP in her closet to try and get home care under the CISL grand budget wasn’t enough PROOF (real case!).
Except now I am ill, so ill, I can't be busy anymore with planning on beating dying. Linda over on her blog, A Girl's Gotta Fly, has just posted about the oxygen I am on, thanks to you. And other things (I can't read her blog till she gives me permission in case it is medical and stuff, but YOU can!) about our life. Please read and comment (after reading ME of course!), as it is hard for her to write these things, hard for her to have to open up, and she needs encouragement too.
So here we are, take two: I am sick. I may say I feel bad today, or that I have this disease or that I am dying but I don’t admit that I am sick.
I will always be sick. I have worked the last three hours in extreme pain with triple my pain and heart medication. That’s because I went out today after my ‘fun with electricity’ yesterday. I have crashed to earth. "Mission Control: This is Elizabeth McClung and I am going down."
There is no plan, I almost died just over a week ago, I couldn’t sit up unassisted yesterday and I don’t know if I am going to the hospital tonight. I am sick. And tomorrow I will be sick, and the next day, and the next. There is no beating this. I am living in overtime. And I don’t have a game plan.Now on to part II: I need help. I am fragile: I had two breakdowns yesterday.
I can’t just throw myself into something because….I am sick. It is snowing or raining outside, I get frostbite in a few minutes and I am sick. Currently I am back to believing that I am non-human. I want to be a great friend, I want to visit every blog, I want to know about every life, and I want to empathize with you, listen to you, solve your problems, but I CAN’T. And I don’t know how to do that and not be so BAD, that it makes me want to claw my face. I need help, and I need caring, and I need to get better IN the head, so that I can regulate my body and live longer. Because I am going to Hawaii in April/May, I am going to start trying to sell stuff to do that and anyone who wants to come is invited (see, that is my ‘As long as I have a plan, and never sit still, the pain is just ‘training pain’ coming back to try and take over’).
The problem about asking for help, is that it is a lot like having a high school crush,
you like this girl, you moon about forever, thinking you are sort of subtle while really everyone knows (or all the girls know, the guys are too busy hitting each over the head to figure out why girl X just burst into tears). The problem is that there is that moment where you have to say it, “I like you!” And then see what happens. And my problem is that I am saying, “I need help” at a time when people are depressed because they are post-Xmas blues, they are depressed because of recession or reality TV. I don’t know why. And I am not asking to be SAVED, to have someone rescue me. I am saying, I am out here in the wilderness, and I don’t know what to do.
Normally, I would take some time off and over the next nine months or year come back to full strength. I don’t have that. So instead of keeping between me and my therapist, because I don't have the TIME, I AM dying, so I posted about it, spewed it all over the net and now I am saying, “Yeah, I am kind of screwed up, can you help?” Please, PLEASE, don’t do what certain parental figures often do and tell me what I should do, or should have done, or if I had done I wouldn’t be in this mess. AHHHH!So, lets say that she takes the gift of chocolate, then what?
I don’t know that part either (If no one does then I guess I pretty screwed!). Cheryl is pretty busy taking care of Linda and dealing with the medicos. And when I, the avenging angel of death, am having hissy fits and meltdowns every six hours, well, that’s not pretty, and that’s not something I want to last (and with my fragile condition, it won't, I'll be in the hospital by weeks' end). Now see, in my OLD mode of operating, I would take my life, put it on the line, call out death and have a duel,
because that is the way I am. Someone said to me, about how impressed they were at what I did but to risk my LIFE? I was sort of puzzled, because isn’t that the point? Yes, if I go to Hawaii, I risk my life. Going to Seattle risked my life. We went to Tim Horton’s and had a little incident and Linda had to use her ‘command’ voice to stop people from getting an ambulance. If I want to LIVE, I need to risk my life.So what does this new life look like? I think I am supposed to rest and then find out if that makes me feel better. I am out here, no net, no back up, but also no clue. See the problem is that here are a few things I don’t have: desire (I desire very little though I found a new manga and put it on my wish list – it won a REALLY big award), lust, anticipation, looking ahead, joy, innocence, peace, contentment, rest, relaxation. So how do I get those? I think Linda has this idea that I will return to my childhood when I had a dog and spend time in the flowers all full of joy and innocence.
And while I would like that, when you have to sleep twice a day and have the nightmares I do, it is hard to wake up and have that innocence. Or with the chest pain, to have this idea of ‘rest’ that doesn’t include the fear of being in hospital with a LOT of tubes coming out of me. I proposed MY idea of what I should do, which is to train minions like crows (they follow me too!) to like go and attack people. While I look on from my tower.
Linda says this is disturbed. I tell her that I AM disturbed so that makes it okay. She says no.I was to have the exuberance I used to have, but I can’t because everything I do hurts, everything I do damages me. I want to be here, on a dog sled,
fulfilling one of my life dreams, doing the Alaska 1000 mile dogsled race (won by a woman for YEARS! YAH!). That dream isn’t going to happen now but I want that look on my face again, the whole, “Oh yeah, I’m going to get them!” I don’t want to live off memories which are quickly disappearing (I remember none of the 10K’s or most activities of this year, even if I still have unhealed wounds from them), but some new thing to be excited about. But I can’t right now, because I am broken. It is just that which I am trying to fix. So I look like this instead, 
looking ahead, fearful, uncertain, sad, wondering if all good things are behind me.I want to be the person who is out finding joy in falling stars, who has true innocence renewed.
But I need help. I do need a plan, a program. Right now all I have is that I am going to try out doing some small shopping online, trying to find something on Amazon.com that isn’t for the Postcard Project, that isn’t a gift for this person or that person, but something just for ME. Can I even buy something or use a gift card just for me? I don’t know, but if I can find that feeling, that desire, that joy, even anticipation, then maybe I can come back, back to normal. Which isn’t perfect, it is about having things go wrong, I mean, I do have a lot of diseases, and there will be little home problems (I wish I had this one!), 
but to be stable mentally. Sure, I might be a bit off in the head or prone to OCD, or overly emotional due to the autoimmune attacking parts of my brain, and due to seizure activity, but I will think that I am part of the human race.I went out today because I made a promise and I keep my promises (if I can only remember), to get a certain comic for a reader here, Yukataonastick. So I was in a comic book store and I talked. Linda said I am the greatest liar when I pretend, for 20 minutes that I am perfectly fine, then pay for it, for the next six hours or more. Well, I was doing fine and talking to a girl who I had an inkling might be on our ‘team’ as it were, when she talked about playing rugby in high school and how great that was as when you all fell down she got to touch lots of breasts and no one suspected a thing. Dudes, take note, that kind of statement is a sign you are with or are chatting up a lesbian or bisexual, NOT that you have similar interests (though you do!). Well, after some more talk and getting the comics, she says suddenly to me, “Your tit is showing!” Now, I was wearing a new top from Torrid or Hot Topic and I had put the jacket half down to give my breasts some ample chance to show off but wha? I looked down, no, the top is still covering my bra which is covering my breasts. This girl leans over, as I wonder if this is my discovery of a third nipple and will it lactate, and adjusts…..my necklace. Apparently the part where I attach it had come around to the front, so she adjusted the necklace for me. I asked her if that was a technical jeweler term and she said it was, which means it WASN’T the most blatant lesbian come-on line of all time. But then again, she did lean over and adjust the necklace. I have to admit, worrying where my clasp is on my necklace when I have chunks of hair missing on my head and look like I wheeled in from a nuclear disaster tends to be low on my list.
So, let’s review okay? This is who I see myself as.
Yeah, things get to the worst, and I will take you on. Yes, I am kick ass. I don't care about the odds, I am the one who is going to meet you and take you on because all you can do is give me pain and that heals, in fact, I’ve been hurt so often I heal abnormally quick. Or I did….. But the reality is that I am not a person who can take on life that way, or problems, and so I am this person, 
not sure which way to go, a little scared, in a place which seems a lot more confusing. I would like to find a way to figure out how to restart. Which pain is making difficult, so if you have like some MORPHINE and don’t mind breaking rules that might get you in jail, please send it to me (if it crosses state lines it is a FEDERAL CRIME – big time!). I want to look for a while like this
, resting, calm, caring but also willing to be cared for(yes, I get the fox ears too, and the cute pet, why not!).How does someone who is 6’4” and usually weighs 200 lbs or more (that’s muscle buddy!) and picks up 100 lbs easily go to being a person who is well, weak. I’m not girly, but I am weak, I am model thin, I am model light, I CAN be carried around, including my chair by a guy or two. I can be carried back into my chair once I fall out by one person. I am not used to that. That’s what I DO, not what happens to me. How do I ask for help and emotional support, and help in keeping myself believing I am human when I am the one who is used to helping others, BECAUSE I have ALWAYS known I am not human, that I live only to save those from ever becoming like me. I want to be there, because how can I ever want anyone to be me? And I have to let that go a little and find peace. How? Who will help me?
And then, as I find a new way, a new path, to surviving each day as someone who IS ill, who is never going to get better for the most part, who is always going to get a little bit worse. But that doesn’t mean I can’t find my own strength, or that I can learn to lean on the strength of others. I just need to let go of doing it all myself. I hope, I can find the peace, the anticipation, the excitement, the joy inside me, and use NOT my strength, to make myself ill proving I CAN do X or Y, but to accept the strength of those waiting to join me
(like the picture). So is that it, is EFM dead? No. EFM has learned there is more than one strategy to fencing, you don’t ALWAYS have to charge! Sometimes, you wait until they come to you, let them do the heavy lifting before you act. Am I going to risk my life to LIVE? Hell yes! Am I going to risk my life just because it is possible? Yeah, I am probably going to do that too. And sometimes, I might go and do things that aren’t particularly smart. Just this time, I have to realize, if I don’t learn the R word (relax, rest, etc), then I will push myself right into a crematorium. Yes, do the thing and then rest as long as is needed to get up, with little advances and help from others, and start again. Because life IS the only game in town and no way I am getting sent off permanently because I am too thick to change. I just need some help.
Donnerstag, 13. November 2008
"Not Dead!": say it with me!
I’m not dead.
I’m NOT DEAD!
I figure if I keep saying this over and over sort of like “positive thinking” good things will happen. First, I would like the vultures to stop circling the apartment,
that is a REAL killjoy, okay. Dudes, I understand the whole ‘circle of life’ thing, but PLEASE, just CHILL!
Second, um, I would like my heart to start beating on a regular basis. I should say the heart is an oft under-appreciated organ and that we expect it to do its job day after day without recognition. And when it is in a pout, like it is now, and decides to NOT beat regularly for say, multiple hours a day, I can understand, I can. I would have a “Elizabeth’s Heart” parade if I could for it, if that would get it beating at a regular beat and stop my hands being purple first thing in the morning and such.
I guess there is a third but I just got a blue screen which wiped out about 1000 words so this will be an far shorter entry than I planned because it seems that both my computer AND my body and not doing to well, lots of blue screens.
Oh yeah, I remember number three which was to try and breath regularly, sort of like a healthy diet, except I don’t. And when your partner is scrambling around for the X’th time to find the bag the breathes for you (ambi-bag),
and you go blind and stay that way and have to sleep hoping that was because your body assumed you were dying and pulled the blood out of your eyes. Well, it kinda sucks.
And while this is blog about disability and dying from a variant of MSA among other diseases, while I use the word 'dying' I tend to put that off a ways. Recently it has been made more evident that I am dying like in, rapidly thinning, bruising, wounds that won’t heal and just looking like someone in a Hallmark TV-show on dying. But I’ve still always felt, in one of my episodes or when I am having a TIA or something that while I COULD die, if I don’t, I’m coming back!
Well, truth be told, right now, I am scared, very scared. Because for the last few days I don’t feel that way, I feel 24/7 that I am circling the drain and it scares me. My heart hurts 8 hours a day and I wake up from sleep with purple fingers. I strain to breath, I strain to speak. After a few hours of being awake my voice is a husky rasp because I don’t have the strength in the vocal cords or my lungs. I can hardly be understood. It scares me. Having that for one day, that was scary. Waking up the second, more than worrying. And starting the third day it is crap scary.
Having chest pains and stopping breathing on those days too, and yeah, I don’t know what to do. I don’t know what trick there if for this. And I’ve only been able to eat about 300 calories in the last couple days (combined), which I think is under ‘not a good sign.’ I'm trying to find a way, 
I swear, I just, can't. I can't.
We went to the doctor. He said I had P.A.T. (is there usually a fluttering of the heart valve as it just flaps for several seconds in P.A.T.? Do they go on for hours? Does the heart stop?). He increased my pain meds (the minimal opiate ones he will allow me) so I don’t feel it so it can’t be there anymore. And when Linda said that I was “going downhill very quickly” he decided he needed to do a physical. A physical? Because a disease of autonomic failure where my blood pressure fluxuates from 70/40 to 187/163 in five minutes is a good time to take my blood pressure, my heart rate, my weight (we are trying to get a specialist so we can get some action, even a tube), sorry I give up.
He won’t sent me to a neurologist. He won’t send me to a respirologist. He won’t send me to any specialist nor will he treat the auto-immune diseases, or the hypothyroidism (or send me to an endrocrinologist), or the acute anemia (as directed to by the hospital), or the O2 level of 72% recording in his office. But I get a physical. Anyway, Linda or Cheryl will be blogging about what the ‘medical team’ is doing soon, and whatever it is, I am FOR it!
Okay, in other news, I did another blog post yesterday over at the Postcard Project and I would think it be very cool to wander over and let me know what you think. The news which is kind of sucky is that I am not getting much in the way of post so far this week (statutory holidays mess things up!). But last week, I was given a complete CD set of the book of “Wicked” for when I go blind again or have problems reading. My hope is that this version is NOT read by that super nasally guy who is Mr. Pink or the accent George Clooney used from O Brother Where Art Thou. Which would be some sort of hell on earth.
Last week was good though as I got this cool present, which is the Hello Kitty Skull Goth First Aid Kit!
The bandaids/plasters are so cool that I would want to cut myself to get one (except since my cuts from last month and back to April/May are not yet healed, this suggestion is a sore point in this apartment). Still, cool, no?
I also got some more cool stickers from many people, including an anonymous source I finally figured out (I thought for a while it was Prince Charles’ second wife). But I did get this postcard set from a completely anonymous source. So anyone who wishes to take credit can.
Please do; I like them, I have names to send them too even. But see, the problem is, if I don’t know who sent them, the person most likely to SEND them is also the person most likely to accidentally RECEIVE them. Unless that was the cunning plan: “Why doesn’t Beth ever send me jellyfish postcards?” Solution: Send them to her, and she will inevitably send them to me!
I have been thinking about heaven a bit lately and has anyone else noticed that the traditional views of Heaven and our earthy McDonalds are pretty much the same. Heaven has a sort of uniform set of options, and you get what you want and there are play areas, and everything is sanitary. Isn’t that how heaven is displayed, you get a toy with your food and all? And there is a big glowing figure (Ronald McDonald)! Anyway, another reason why I DO NOT want to go to heaven.
If I had to go somewhere, to live a dream while Linda slogged it out here on earth (which sounds very cowardly of me), I guess it would be to have what I didn’t have, Cheryl and Linda and I all in High School.
You know, back when each year was long and high school would be the best 1/4 of our years on earth. We could go hiking and have sleepovers and do sports day together. If I got into varsity again, at least I know that SOMEONE was up there cheering in the stands. And I'd want to be there for Linda yelling, "Throw that sucker!" when she did the shotput and we could flake out after the 'presidental test run'.
Since high school was pretty horrid for me, to pick your friends and then go back and high school and onward, would be cool; not heaven exactly, because I don't want to go through the Marfan's growth spurts, the leg and knee pain, the raging emotions, the sexual doubts, the whole waiting for more to come in the breast department (Me up at the counter: "Hello, I think my breasts got delivered to Stacy who is a DD and she is 16! She got MY SHIPMENT!"). And if I am to be reincarnated, I want to be a cat of course (I mean, who doesn’t!), but I think I will be a cat with a lot of trust issues.
But quite honestly, I think I would rather stay here for a while, a good long while. I am sorry, I know this was supposed to be a mini-series but I plan to turn this into the EFM version of LOST, where instead of getting all the answers in one year and then I pop off, I would LOVE to announce that I have contracted for several seasons.
I’m signing off because it is getting very hard to breath again. Linda has gone to bed but I am so purple that I am still on the main concentrator. Still waiting on the portable. Linda has been arranging for more care for me during the day as going out by myself in my manual is not so much an option. That electric chair order came a bit too late. Sigh. I don’t know how she is dealing with the finances of keeping me out of a home and out of the hospital and I know our focus continues to be to get into the hospice program. Linda really needs a lot of hugs right now.
I think we both do. She is trying to cope with bringing me back, or keeping me alive as well as a full workload and bullying and an extreme level of abuse from her bosses.
She needs a lot of hugs right now. Because see, while my plan of exploding literally over her manager would be a good way to go, Linda says no.
So we are struggling, both of us in our own ways. Next time, I will try to be funny, honest. I is just, I cry every day because I am so scared.
The big pain, the TIA, the heart infarctions and purple arms I can handle, as it is being VERY busy and in pain, but I'll recover, I know that. It is these hours of being beaten down and struggling for breathe, and the fear when it takes a little longer for that breath or those heart beats to come. But I am still blogging and after this, I am going to do some work on a postcard or two because....I may be “scared shitless” as they say, but there are the battles and bullies we fight in the world, and there are the battles of fear we fight in ourselves. I’m not giving up, not today, and I hope my body remembers that.
I’m NOT DEAD!
I figure if I keep saying this over and over sort of like “positive thinking” good things will happen. First, I would like the vultures to stop circling the apartment,
that is a REAL killjoy, okay. Dudes, I understand the whole ‘circle of life’ thing, but PLEASE, just CHILL!Second, um, I would like my heart to start beating on a regular basis. I should say the heart is an oft under-appreciated organ and that we expect it to do its job day after day without recognition. And when it is in a pout, like it is now, and decides to NOT beat regularly for say, multiple hours a day, I can understand, I can. I would have a “Elizabeth’s Heart” parade if I could for it, if that would get it beating at a regular beat and stop my hands being purple first thing in the morning and such.
I guess there is a third but I just got a blue screen which wiped out about 1000 words so this will be an far shorter entry than I planned because it seems that both my computer AND my body and not doing to well, lots of blue screens.
Oh yeah, I remember number three which was to try and breath regularly, sort of like a healthy diet, except I don’t. And when your partner is scrambling around for the X’th time to find the bag the breathes for you (ambi-bag),
and you go blind and stay that way and have to sleep hoping that was because your body assumed you were dying and pulled the blood out of your eyes. Well, it kinda sucks.And while this is blog about disability and dying from a variant of MSA among other diseases, while I use the word 'dying' I tend to put that off a ways. Recently it has been made more evident that I am dying like in, rapidly thinning, bruising, wounds that won’t heal and just looking like someone in a Hallmark TV-show on dying. But I’ve still always felt, in one of my episodes or when I am having a TIA or something that while I COULD die, if I don’t, I’m coming back!
Well, truth be told, right now, I am scared, very scared. Because for the last few days I don’t feel that way, I feel 24/7 that I am circling the drain and it scares me. My heart hurts 8 hours a day and I wake up from sleep with purple fingers. I strain to breath, I strain to speak. After a few hours of being awake my voice is a husky rasp because I don’t have the strength in the vocal cords or my lungs. I can hardly be understood. It scares me. Having that for one day, that was scary. Waking up the second, more than worrying. And starting the third day it is crap scary.
Having chest pains and stopping breathing on those days too, and yeah, I don’t know what to do. I don’t know what trick there if for this. And I’ve only been able to eat about 300 calories in the last couple days (combined), which I think is under ‘not a good sign.’ I'm trying to find a way, 
I swear, I just, can't. I can't.We went to the doctor. He said I had P.A.T. (is there usually a fluttering of the heart valve as it just flaps for several seconds in P.A.T.? Do they go on for hours? Does the heart stop?). He increased my pain meds (the minimal opiate ones he will allow me) so I don’t feel it so it can’t be there anymore. And when Linda said that I was “going downhill very quickly” he decided he needed to do a physical. A physical? Because a disease of autonomic failure where my blood pressure fluxuates from 70/40 to 187/163 in five minutes is a good time to take my blood pressure, my heart rate, my weight (we are trying to get a specialist so we can get some action, even a tube), sorry I give up.
He won’t sent me to a neurologist. He won’t send me to a respirologist. He won’t send me to any specialist nor will he treat the auto-immune diseases, or the hypothyroidism (or send me to an endrocrinologist), or the acute anemia (as directed to by the hospital), or the O2 level of 72% recording in his office. But I get a physical. Anyway, Linda or Cheryl will be blogging about what the ‘medical team’ is doing soon, and whatever it is, I am FOR it!Okay, in other news, I did another blog post yesterday over at the Postcard Project and I would think it be very cool to wander over and let me know what you think. The news which is kind of sucky is that I am not getting much in the way of post so far this week (statutory holidays mess things up!). But last week, I was given a complete CD set of the book of “Wicked” for when I go blind again or have problems reading. My hope is that this version is NOT read by that super nasally guy who is Mr. Pink or the accent George Clooney used from O Brother Where Art Thou. Which would be some sort of hell on earth.
Last week was good though as I got this cool present, which is the Hello Kitty Skull Goth First Aid Kit!
The bandaids/plasters are so cool that I would want to cut myself to get one (except since my cuts from last month and back to April/May are not yet healed, this suggestion is a sore point in this apartment). Still, cool, no?I also got some more cool stickers from many people, including an anonymous source I finally figured out (I thought for a while it was Prince Charles’ second wife). But I did get this postcard set from a completely anonymous source. So anyone who wishes to take credit can.
Please do; I like them, I have names to send them too even. But see, the problem is, if I don’t know who sent them, the person most likely to SEND them is also the person most likely to accidentally RECEIVE them. Unless that was the cunning plan: “Why doesn’t Beth ever send me jellyfish postcards?” Solution: Send them to her, and she will inevitably send them to me!I have been thinking about heaven a bit lately and has anyone else noticed that the traditional views of Heaven and our earthy McDonalds are pretty much the same. Heaven has a sort of uniform set of options, and you get what you want and there are play areas, and everything is sanitary. Isn’t that how heaven is displayed, you get a toy with your food and all? And there is a big glowing figure (Ronald McDonald)! Anyway, another reason why I DO NOT want to go to heaven.
If I had to go somewhere, to live a dream while Linda slogged it out here on earth (which sounds very cowardly of me), I guess it would be to have what I didn’t have, Cheryl and Linda and I all in High School.
You know, back when each year was long and high school would be the best 1/4 of our years on earth. We could go hiking and have sleepovers and do sports day together. If I got into varsity again, at least I know that SOMEONE was up there cheering in the stands. And I'd want to be there for Linda yelling, "Throw that sucker!" when she did the shotput and we could flake out after the 'presidental test run'.
Since high school was pretty horrid for me, to pick your friends and then go back and high school and onward, would be cool; not heaven exactly, because I don't want to go through the Marfan's growth spurts, the leg and knee pain, the raging emotions, the sexual doubts, the whole waiting for more to come in the breast department (Me up at the counter: "Hello, I think my breasts got delivered to Stacy who is a DD and she is 16! She got MY SHIPMENT!"). And if I am to be reincarnated, I want to be a cat of course (I mean, who doesn’t!), but I think I will be a cat with a lot of trust issues.
But quite honestly, I think I would rather stay here for a while, a good long while. I am sorry, I know this was supposed to be a mini-series but I plan to turn this into the EFM version of LOST, where instead of getting all the answers in one year and then I pop off, I would LOVE to announce that I have contracted for several seasons.
I’m signing off because it is getting very hard to breath again. Linda has gone to bed but I am so purple that I am still on the main concentrator. Still waiting on the portable. Linda has been arranging for more care for me during the day as going out by myself in my manual is not so much an option. That electric chair order came a bit too late. Sigh. I don’t know how she is dealing with the finances of keeping me out of a home and out of the hospital and I know our focus continues to be to get into the hospice program. Linda really needs a lot of hugs right now.
I think we both do. She is trying to cope with bringing me back, or keeping me alive as well as a full workload and bullying and an extreme level of abuse from her bosses. She needs a lot of hugs right now. Because see, while my plan of exploding literally over her manager would be a good way to go, Linda says no.
So we are struggling, both of us in our own ways. Next time, I will try to be funny, honest. I is just, I cry every day because I am so scared.
The big pain, the TIA, the heart infarctions and purple arms I can handle, as it is being VERY busy and in pain, but I'll recover, I know that. It is these hours of being beaten down and struggling for breathe, and the fear when it takes a little longer for that breath or those heart beats to come. But I am still blogging and after this, I am going to do some work on a postcard or two because....I may be “scared shitless” as they say, but there are the battles and bullies we fight in the world, and there are the battles of fear we fight in ourselves. I’m not giving up, not today, and I hope my body remembers that.
Abonnieren
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