The one constant in life is CHANGE! Change happens, and oft without permission, irritating that, no? Last 8 days I experienced two diaphragm failures, and internal organ shut downs, otherwise known as ‘dying’ (or the start of the ‘organ cascade’ where the body is so weak that the different organs and systems shut down, one after another until there is only the heart and lungs and brain left). You may or may not know, my heart is in constant electrical failure, where there are thousands of erratics each day, including chambers not working, valves leaking, valves leaking backward, and the two lower chambers not beating at all. Nothing can be done about this except mask the pain with painkillers and try not to get too weak, as thankfully the aorta overcompensates by doing superbeats which move the blood even though half the heart has stopped working.
I also take the highest dose of neural pain blocker because if I don’t in 30-36 hours, the drug wears out and the nerves make the muscle spasm, like when you are woken by your leg going into spasm (usually with a scream). Only for me, I have dozens of spasms like that just on a forearm, and hundreds to thousands on my body which makes it so I scream until my vocal cords are stripped and the screaming produces no noise. This is…..unpleasant, and happened twice in the last 8-9 days as the constant emergencies and sleep made day and night mixed up along with the pills.
When the last full body emergency seemed dealt with, and I had rested for a day, I decided that the whole dying had taken way too much of my time and I wanted to see this ‘outside’ that people kept talking about. Friday I had my preplanned escape and the worker helped me dress and get out the door.
The joy of living in Fernwood is that it is the old style mix which we like to think a city should be: old trees with branches meeting atop the street, large green space for kids to set up lemonade stands (seen on weekends near garage sales), and house ranging from Victorian and Edwardian to the smaller 1940’s houses build on the $2000 sailors and solders got after WWII, and the larger 1950’s houses, after a decade of employment and growth. Even weakened, I am able to see all this by wheeling only a block or two in any direction, including two micro parks and a 1950’s aging movie star style ground floor apartment complex. Wheeling along one street, each of the houses are distinctive with colour and character, each one unique. It is a good neighborhood to wheel around.
Summer had arrived or at least started while I was in the hospital bed, and the birds were busy in the trees (what birds are these?). And the gardens had started to come up. This garden with the mix of flowers and colour along with a tree at the end often seen in Japan (the name of the red tree anyone?), cheered me up as I wheeled a block, peering at houses and gardens. I arrived at the local grocery store corner store which happens to be the best flower stop in town.
Linda often gets flowers for me to sit by the computer so though I can’t see out (yes, construction still going, after 38 months) I can see nature. I had my emergency money with me (in case I need to take a taxi home from the hospital if I pass out while wheeling and end up in ER) and bought Linda some Lilies in a pot to give to Linda to celebrate her getting a FULL TIME JOB! We have a north facing apartment and she has a north facing office, and the lilies need bright but no sun, cool and watered. Well, an apartment that has air conditioners on all the time or her job for the city government both fit the bill. Here are her lilies before she takes them into work along with a bouquet of mixed flowers I got for my birthday. Behind the flowers you can see the original Jason Hunt killer whale carving (his uncle did the carving for the queen’s baton for the Olympics, his grandfather did the Beacon Hill totem pole and he carved for the BC Royal Museum), Linda’s previous birthday present (from readers of Screw Bronze and myself).
For my birthday I got an Emily the Strange football t-shirt, with the lucky number 13 on the back.That night, I did emergency exercise for an extended time (an hour plus) until I was dripping sweat, in hopes of getting my body systems stable. The downside is that a) I am in a lot of pain for several days and b) the body retains water and I swell up as my tissues are so fragile now that I tear them doing anything and until I heal, I bloat (ug! Avoid mirrors).
The next day was my party, which started late due to my recovering from the illness and exercise. But I had a good time, and I hope all those who came did as well. Here I am getting my Birthday Cake (red from talking too much and overheating), and wearing a very cool sleep-shirt,showing a cute furry gal holding her plushie, a gift converted into a fav sleep-shirt. I got gifts, cake and messages from lots of great people who wished me happy birthday including a email with a personal recording for my birthday. I can see why people keep this birthday tradition, it isn’t bad at all.
I had been given a bubble wand and after a rest and lunch, I went out and tried it. With a bit of practice I managed to cover much of our building with bubbles, including a few which wandered into second and third floor apartments (as the tenants had the balcony doors wide open during the hockey game). I got a few ‘Wha the?’ faces coming to the window to find out why bubbles were floating by or in. This is me FOCUSED on the bubble making, not complete stoned out of my mind, which is what my facial expression looks like.
Linda was so envious that she wanted to try it, so she got into her ‘action stance’ and started pumping out the bubble. She was quite efficient and concentrating on making more and more bubbles that I had to remind her that this was ‘FUN’ too. She relaxed a little, which got her casual and smiling. It was good afternoon fun.
I also spent an hour or two writing postcards, as I have been able to send postcards again, with a lot of help from Linda and Cheryl, and though it is usually 16 to 35 every two weeks. I am glad to be able to send cheer and return messages to postcards, letters and emails but we are able to try out all the cool new rubber stamps we bought at the sale in April. Postcards shown are from two weeks ago, so it doesn’t ruin the surprise. I know that with my health looking grim for weeks to months, and between emergencies and trips into hospital, doing the five steps for each postcard and the time and energy that takes may seem foolish, as I often lose Monday in recovery from the weekend work on postcards. But as I have a limited time left, and less and less that isn’t just survival, I choose to be friends, to send to friends, to try and be there for people as much as I still can.
The good news of the full time job has been offset by having to wait that while for the first paycheck, which we are still waiting (before rent, I hope!). So while she is working and has new costs, we are still struggling. The job will take care of medications and rent, but the backlog of a year of supplies and things broken down from getting wireless back on the laptop to the urgent need for a NEW upright fan were coming from her weekend and evening job at the heritage building, she was getting great hourly pay, just few hours, but enough to start buying the 15 months of supplies we put on the 'when we get a job' list. Thursday, when she was soon to go into work, she got a call, a sad one from the boss at the heritage society where she already has friends. It seems that though her new job is a 1 year temp position, it is part of the same union as the heritage society has. And even though, as a 'temp', she doesn't get medical coverage, or other 'union' benefits someone at the union decided that if she works on weekends for the heritage society, that would count as 'overtime' since she has a full time job within the union already, and the union doesn't authorize temp overtime. The conclusion: because she was the number one pick for a job 400 people applied for, she lost the part time job which she also was the number one pick.
I asked her, "Do you think we will ever have one of those phone calls were something GOOD happens?"
We gave each other the limp smiles of too long fighting for things only to find yet another 'rule' or something which ends up taking away part of the success we fought for and thought we won (like how our medicare refund at the end of the year was.....$0, because the two most expensive pills were 'disallowed' even though they are both pain pills and there is no other pill which works. We had been told, "Don't worry, it is hard now, but you will get the money back at the end of the year....." Sorry Linda, I know you enjoyed that job.
Sadly, we still will need an upright fan desperately.One of ours broke off the base but we still use it, propped up. All of the fans are 2-3 years old and running on some miracle power, but all three are about as powerful as one new one. We need the fans because 1) if I don’t have a fan blow the air in a specific flow which cools my head, then flows down my body to keep that cool, I over heat (and have strokes in my sleep as my blood pressure goes up while the weaker veins from previous bleeds in the brain leak blood causing another stroke. I can and have gone into heat exhaustion or stroke while sleeping. And 2) if I don’t go that bad, if my head is heated, it overheats a nerve cluster atop the neck which leaves me paralyzed). The fans help up move the air from the air conditioners directly to cool my head and torso Ergo, with summer coming, we will need a new fan, likely two. The Florastor, which was kindly gifted to me, is almost gone, part-way through our last bottle. Florastor, recommended by doctors for those on cipro or without intestinal flora (like me), is the only thing that lets me absorb nutruits at all from my food, which not only includes calories but the B, D, and other critical vitamins (B is what I need to slow the brain damage as B-12 is converted into the coating for nerves to do electrical transmissions, and I am constantly fighting to keep that at the MINIMUM standard. Lower than that, the body ends up destroying nerves in order to have and use this element). So yes, though bought at a drug store, it is very important to living beyond a few weeks.
Linda told me she put what she needs on the Amazon Wish List. This includes the ice cubes to cool the five ‘core’ heat areas of the body and to cool the body inside quickly if I am overheating by giving me drinks as cold as possible. However, she got distracted and obsessed with these ‘brain ice cubes’ which she told me are ‘soo cute’ and ‘cool’ – I can’t tell if this is my goth habits rubbing off on her or her interest in the body. She has as bathrom reading books on body functions, and enlargements of things I don’t want to look at as being in ME while I am going to the bathroom. Maybe she is one of those people who can watch an operation going on while eating dinner, or watch a show on ‘bug in our floors and walls’ while snacking, I don’t know.
Thank you for the gifts of DVD’s/TV shows as both during the two days of pain of doing the ‘sweat exercise’ once a week (missed for almost three weeks due to very ill health) and after surviving lung, heart, bladder, kidney, or other organ failures, I can but sit there, and this helps distract from the dizzy, nausea, and extreme weakness. Thank you for the kindess of this, as I sometimes have very little too look forward to for several days but knowing that ‘if I survive tonight, and sleep for most of tomorrow, when I get up, if I can get help getting set up, I can lie here and watch xxxxxx (insert TV show/film here).”
So hurrah for birthdays, and for flowers in the Fernwood area. Thanks for the fun and also extremely useful gifts like Popcorn (that’s useful and FUN! And it goes with the TV shows). Also a double hurray because I am still at home: until late last night/early this morning, a five day ongoing degeneration meant that I was going to have to go into hospital this morning if my body didn’t start up again….and it did, just at the deadline – so I am very, very happy that I am not in the hospital today. And I made bubbles.
3 hours ago