Monday, May 23, 2011

Beth's Birthday Bubbles, Linda's Layoff and Fernwood Flowers

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.


Baba Yaga said...

Bubble wand = genius. Whoever that was, I'm impressed.

Organ failures (and although logically diaphragm failure must be possible, whoever imagined that it was) = EEK!

Birthday celebration = hurrah! So pleased you managed to have it, on the planned day. And outside is also good: you live in a decorative spot, don't you?

Lilies = good idea. Gaining one job to lose another = how many more ways can life find to mess things up for you? Gah.

Brain ice cubes = good heavens, what will they think of next?

Library next for me, and knitting in a darkish room to follow. Found out today that the allotted dosage of magical migraine-be-gone is less than one a week: which is better to know than not to know (rebound migraines = Very Bad Idea), but slightly disappointing. Thank goodness for ultra-dark specs.

Tara said...

Happy birthday, Beth!

I had a long comment typed out but Blogger ate it, ugh. In the comment, I was introducing myself - I've been reading your blog for quite some time (some might say I was lurking, but I think that's an ugly word with somewhat negative implications) and it's one of the best I've come across in all my years on the Internet. I've never commented before (and I honestly don't know why I haven't), but I look forward to your updates and I love your eloquent and deeply personal writing style. I am always impressed with your unfaltering spirit and positivity (and please don't take that the wrong way - I just think you are a wonderful person) and now that I've 'taken the plunge' into commenting, I'm sure you'll be hearing more from me in the future :)

I'm very sorry to hear about Linda's job...simply put, that SUCKS.

So...hi! I'm Tara and it's very nice to meet you (I guess 'meet' is the appropriate term?)!


Dawn Allenbach said...

I love the alliteration of your title!

I'm so glad that you were able to have fun on your birthday! I think I now want a bubble wand, too.

I'm also glad that Linda finally got a fulltime job, but it does SUCK that it means she loses the heritage society job.

I have the Wish List pulled up, so I'll see what I can pitch in with.

*gentle hugs*

Dawn Allenbach said...

Regarding your Wish List

Die Erde von oben = The Earth from above

Anonymous said...

Linda here...

I'm so glad you were able to get out this weekend and enjoy the sunshine and the plants. Just yesterday I was thinking how we live in the prettiest neighbourhood - huge trees which hang over our street and lots of flowering trees and plants.

I was relieved that you didn't have to go into the hospital. I'm glad your body is working a bit more smoothly now.

I had fun with your birthday celebrations. A big 'Thank you' to those who came in person or sent greetings.

I loved my lilies - what an amazing surprize. I'll be taking them to work today or tomorrow.

Brain ice cubes are cool! And no, I don't think I could watch operation shows and eat at the same time;)

Noisyworld said...

I <3 the bubble wand and the brain ice-cubes :) Sound like birthdays suit you perfectly :)

I am really excited that I now have a famous postcard (maybe even a little more excited than is technically sensible lol)

The situation with Linda's job(s) is ridiculous, surely she should be allowed to argue for some discression due to your health bills situation. I don't understand over-officious law makers/enforcers :(

I hope that the birthday pain hang-over isn't too bad :)

wendryn said...

Bubbles! That's quite wonderful! :)

I'm glad your birthday celebration went well. I'm glad you got to get out a bit - you live in a beautiful place! I'm also very glad that you aren't in the hospital.

Congratulations to Linda on the full time job with benefits! The loss of the part time job sucks, though. Hopefully something else will come up soon.

I'm keeping my fingers crossed that your body stays at least somewhat stable for a while and lets you enjoy life despite all of the pain.


Raccoon said...

I love when you post pictures on clumps of postcards. I look through to see if the one I got is there.

Baba Yaga, brain ice cubes are almost mainstream, compared to some that I've seen.

It's great that the flowers are out, and that it was cool enough outside for you to go out.

Linda, that's kind of screwed up. You aren't even part of the union, are you?

Tina Russell said...

Yay! I’m glad that good things are finally happening for you. Little things like bubbles and cute-furry-girl shirts can mean so much. And, congratulations to Linda on the job!

cheryl g said...

I am so glad you avoided the hospital and were able to have a wee birthday party.

You do live in a beautiful neighborhood and a very pretty city. I enjoy the spring and summer flowers when I visit.

The cake was tasty and the bubble wands were lots of fun. You looked so gleeful making bubbles. Linda looked very serious as she was concentrating on technique. Those wands made nice big bubbles.

I really wish you and Linda would get some good news phone calls for awhile. There’s been enough adversity and struggle – you both deserve a break.

The brain ice cube trays are very cool.

SharonMV said...

dear Beth,
I'm so sorry about all the very bad days. You go through so much. I wish there was less pain for you (the muscle spasms must be so awful). I'm glad that you had time outside & a birthday celebration.
You look good (& happy) wearing your new Emily Strange shirt. Linda is definitely intense about making those bubbles. I've never tried one of those big bubble wands. I;m so glad you had fun.

I enjoyed the pictures of your neiborhood. You gave us a photo-tour of some of the streets near your house before. It is a charming area with interesting houses & pretty gardens. I miss that, not living in an old city/town. But we do have lovely views of sky & mountains in the distance. I like walking through older neiborhoods in the spring & looking at all the lovely gardens.

I'm glad that you are doing postcards (it's good that you're not doing too many). I know it's important to you (and to the recipients).

Congrats to Linda on the new job & co-miseration on loosing the part-time job. I hope the benefits kick in soon.


Elizabeth McClung said...

Sadly, the new job requires paying to the union but not health benefits or even able to apply for other union/government jobs because it is a 1 year temp position. We were hoping for the part time job to pay for health and other costs like fans and servicing our oxygen concentrator and the like. So, good because UI is gone and still can look for another job but not so good as all that was hoped for kind of got shot down:

Health Benefits: No
Can apply for internal jobs: No
Weekend job will bring in savings: No

Her boss, knowing she was overqualified tried to get her put further up the pay scale but again, 'No' from the union (why do they PUT and advertise that the job is from $X to $Y when even the person hiring you is told that they can't pay more than the least amount?).

But not in hospital. The days are getting warmer, and that is really taxing the air conditioner and fans, thankfully, the exercise I did and working the fans keeps the place within body reasonable.

And I hope to keep doing postcards and get outside to do some more bubbles. I am now thin again, strange how the heat and exercise makes me gain water weight like crazy.

Elizabeth McClung said...

Baba: that really sucks about the migraines, it is good to have breakthrough medicine but only once a week? That is not so great. Now I'm the one who is stuck not wanting to say I am thinking about you - but more like, is there anything I can do to make the dark a better place to be, if that is where your health requires you to be.

Dawn: oh, that's the second list where I put stuff that I am thinking about or watching but don't want to put on the 'offical wish list' - thanks for the translation.

Baba Yaga said...

Take two - Beth, thank you. Yea, the 'thinking of you' when what one means is "I'd like to make it better" is tricky - feels inadequate because, really it is. At least, it is when it's me saying it: when you say it, it feels much more adequate!

Luckily, I don't usually have the very severe type of migraine Neil has, and cricket season overlaps with migraine season, so I can turn the radio commentary (speech is relatively painless) down to just-audible, and knit things which don't require much looking at, and be relatively content.

Boredom's the big problem, isn't it, when body refuses to co-operate? It's good that you have a fresh supply of DVDs. I wonder what else might help...

JaneB said...

Bubbles are great, as are flowers... and a job for Linda and not having to go to the hospital. So at least something good happened. As for the rest - well, ick. And darn. And not fair and all the other supportive things I can come up with.

I get paid next week, will send some Florastor then (or other things off the need list if someone else got there first).

Sounds like you managed an OK first birthday - maybe you should have monthly birthdays to make sure you get your quota in, now you know they are fun??

SharonMV said...

Dear Beth,
Sorry that Linda's new job doesn't give you any health benefits. Dennis has been working part time for a year now & still not qualified to get health insurance. We still have Cobra for another month and are hoping to get that extended. If not, we have to try & get insurance through HIPPA which is for high-risk people. No idea how much we'll have to pay then.

Some good news - I saw my immunologist at UCLA and he increased my dose of IVIG (he was the one who cut it last year). I didn't even have to ask - I guess he could tell how much worse I was by the exam and the blood test results I brought in. My IGG level had gone down over 300 points - I was barely in the low-normal range. And I very politely held my tongue and didn't say "I told you this would happen".
Of course, I had to spend the last 2 days on the phone with the insurance company to get the increased dose in time for my infusion tomorrow. Once the infections decrease, all the auto-immune stuff should also improve.

I'm sending you a little package. It should go in the mail friday.


Neil said...

Baba Yaga: my abdomenal migraines come without headache or sensitivity to noise, so I can lie there and feel wretched but still listen to the radio.

I also get occasional migraine headaches that come with aura; but I'm still not overly sensitive to sound or light. But at least I can take painkillers for those.

I hope your migraines take a holiday; or maybe you could donate them to a deserving politician? If only that were possible!

Linda: with one foot back in the door, can you at least apply for permanent positions that come up? Where I am, there are a lot of positions that will never be seen or filled by non-employees.

Have you thought of retail? You shouldn't have to! But I'm told 7-11 has excellent employee benefits, and I imagine you could work part-time there.

Beth: I've just realized how appropriate those brain ice cubes are. Even in your minimized state, you have more brains than most of us.

I think of you both constantly, and send atheist prayers and positive energy many time a day.

Love and zen hugs,

Laura said...

I'm eyeing the fan you you know how much the shipping would be? :O My parents would probably chew at me, but I could try and get at least one fan for you if I can. :) Hopefully next month's check comes a bit hefty. *crosses fingers*

Lene Andersen said...

Bubbles are the best. Especially for birthdays. Never get tired of them. Glad you had a good day.

And your neighbourhood is so gorgeous! I've always wanted to live in one of those old houses with many corners, window seats and attics. Too bad they're rarely accessible! ;)

So sorry about Linda's job - it just never lets up, does it?

Elizabeth McClung said...

Laura: I think the shipping for the fan is about $7-10, if they don't ship to a P.O. box, please email me at mpshiel at and I can give you my sisters address. This is the fan which is the highest in comparision ratings, and consumer reports so we thought better to get the right fan than three or more not so great ones. Thanks if you are able, it would be greatly appreciated.

Lene: No, it doesn't seem to, she is looking for short and long term jobs as able, but the UI went a month early, so that ate the tax return, but we are making it...almost, we could use the fans now and don't have the money yet for them, but that doesn't stop the heat. 'Survive the summer' - the annual mantra along with 'Don't be a cliche and die in Winter'

Neil: No, the recession from the olympics got the unions making sure that full time workers are not made redundant or transfered elsewhere, so it takes at least 6 months of full time temp work before internal applying can be done. Alas, Linda was 'external' as a manager, and thus didn't have that advantage when let go, and has to start from scratch again. But keeping at it.

Bubbles are fun, flowers from Birthday still on my desk, nice.

Linda McClung said...

Laura: It's Linda here. We would REALLY appreciate the fan, if that is something you can afford to give. We've been blessed with a relatively cool spring so far but the weather is expected to warm up soon. The shipping for the fan would be between $10-$12, depending on which seller you buy it from.