A Girl's Gotta Fly

Giving thanks

2011-11-27T23:24:00.000-08:00

Thursday was American Thanksgiving, so it seems an appropriate time for me to share some of the things for which I am thankful.

1. My health. I’ve been battling a cough for the last 8 weeks, but am on the home stretch now. Even with the cough, I see myself fortunate in that I am well enough to work, to do chores, to exercise with Beth, and to support her physically. My memory isn’t so great, but I think not enough REM sleep does that to a person.

2. Beth is still alive and there are moments where we can be together. There are a lot of ups and downs and neither of us are perfect, but we both want to have a better relationship. And we keep working towards that.

3. BC Palliative Benefits program and hospice. Beth was registered palliative earlier this year, which meant some of her medications were free of charge. This has saved me hundreds of dollars each month – money which I didn’t have to begin with. Beth was registered with the Hospice Society a few months back, and while we haven’t used their services much yet, Beth was able to talk to a counselor for a few weeks. Hopefully, she can do more as she is able.

4. My job. Islands Trust has a mandate to preserve and protect the southern Gulf Islands between Vancouver Island and the mainland of British Columbia. It does this by regulating planning and development on the island, and preserving pieces of land in trust. The work has little stress, which is something I appreciate at the moment. The people I work with are great, especially my boss. He is really flexible when it comes to my needing to take time off for care giving as he himself was a primary caregiver a couple of years ago.

5. Family. We don’t have any family in the area, but I appreciate the occasional phone calls from my parents and my sister-in-law. My parents flew me out to visit them this summer and attend my grandparents’ 60th anniversary. It was wonderful to reconnect with them. I am also excited about my cousin moving to Victoria this winter to work at CFB Esquimalt as a military police officer. I haven’t seen him in years.

6. Friends. Words of encouragement are priceless. Beth feels so alienated so any correspondence would help her feel part of the living. I always feel stronger when I know there are people behind me supporting me. Also, while I was unemployed a number of friendly readers reached out and assisted us -people we have corresponded with for years but also complete strangers who to this day we don’t have their address to even send a thank you card. If you are reading this and you were one of them – thank you so much. I don’t know what we would have done without you.

Thank you to those of you who have purchased off the Amazon wishlist (especially when accessed through Beth’s blog so that she receives a small percentage of what you paid as a credit she can put toward her purchases). Someone has kept us supplied with Florastor which Beth needs to aid her digestion (P.S. I only have half a bottle left). Other medical items on the wishlist we always need restocking are the tegaderm patches (which prevent her pain patches from coming off) and the emla cream or other topical anaesthetic for medical tests. Batteries (AA and AAA) are always needed and my rechargeable ones aren’t recharging any more. The AAA batteries are used for Beth’s noise cancelling headphones which she couldn’t survive without, mp3 players for working through the pain while exercising, flashlights (so I can keep most of the lights off while Beth is sleeping), computer mice and other gadgets.

Purchases for the soul, rather than the body, have been equally important – books and DVDs to help Beth live beyond the pain, books for me to escape for a few hours, and DVDs we watch together as a couple. Those are special times for us together.

Financial donations go towards medications mostly, but also recently have been able to buy Beth some clothes she desperately needed – pajamas, sweats, tshirts and hoodies. Next on the list – warm socks, wheelchair gloves (hers have split at the seams), more bottoms and a haircut for each of us.

While my job is great, the pay is not. There isn’t enough for extras no matter how nice or needed they might be. One of the reasons Beth did not go to Hospice for respite is that you had to pay for a week – something we really couldn’t do. We have come up with an alternative, which is possible with your help. We’d like to give Beth a two night stay at a local hotel in Victoria. There are some very nice hotels downtown and with winter rates they would be less than $100/night. Beth would still be able to get care workers to come and check on her and make sure she has meals. They could go for walks with her to Starbucks or to the museum. And she’d still have access to the internet. I would be close enough that she could call me in an emergency. We are hoping to give Beth this respite/mini holiday in mid-December before the prices go up. If you could help with that, please click the donate button on the right.

I have my own mini-respite in the first week of December. I am going up to Gabriola Island to do some work in our office there. I’ll be on Gabriola for two days and will spend the night in Nanaimo at a nice hotel where I can relax – go for a walk, read a book, soak in the whirlpool, or whatever else strikes my fancy. It is only one night, but it will be a welcome break.

Asking for help as a caregiver

2010-12-08T03:58:00.000-08:00

One of the hardest things I’ve had to learn as a caregiver is to ask for help. Turns out I am not alone. I share this problem with a lot of caregivers, especially those who are taking care of their spouses. We’ve been taught in society that it is our responsibility to take care of our spouses in sickness and in health. This is especially true for women as they are expected to take care of others – their children, their spouses, their elderly parents, etc.

In reading caregiving books and speaking to other caregivers, I’ve been told that often people want to help but don’t know how. As as one person said, if we stepped back for a minute we can figure out all kinds of ways for people to pitch in. So, I’ve taken a few minutes to figure out ways people can help if they don’t leave nearby and that’s what this blog is about.

When I was working full-time I learned to accept help from the local health authority which brought in homecare workers to give Beth lunch while I was away and for a while, give me one night a week where I could sleep uninterrupted through the night. I also had a steady income and medical benefits which covered the majority of medications. This gave me some semblance of stability and control over life.

Being unemployed has taken so much of that stability away. My employment insurance income doesn’t cover all our basic costs, never mind the extras like clothing, haircuts, car repairs, and many others. I try to shelter the stress of finance from Beth, but it still manages to leak out especially if I am tired or cranky. She’s really sensitive about it and with not being able to put occurrences into a time perspective it’s all there in the forefront of her brain as if I said it an hour ago.

Beth mentioned in her recent blog that for those who wanted to send a Christmas gift, the best gift you could give would be to help with medical costs. This would take the edge off the financial worries. She doesn’t know how much the costs are, just that they are significant. I handle all the monetary costs, with the exception of the occasional donation people specifically give for the postcard project or money Beth has made on selling her own books. Please don’t mention actual costs to Beth if you are talking with her as that will cause her a lot of stress (and as a result, me too!).

If you would like to help with the basic expenses, I would be grateful. Monetary donations through paypal (see the button to the right of this blog), purchasing the actual items (please let me know to avoid duplicates) or donating loyalty points are ways anyone can help. So, if you can help fiscally, here’s a list of basic things we need:

Medications… the biggies are:
Lyrica – this costs about $90 for a two-week supply if we get it through the pharmacy here in Canada, about half that if we order it online through a pharmacy in the UK. Without it Beth gets a lot of seizures and increased nerve pain.
Antidepressants – Beth’s anti-depressant is from the UK because Pfizer doesn’t produce it here in North America. $30/month. It’s the only one we found that works for Beth. Also an anti-depressant for me to help me cope with everything that life throws at me.
Fentynol patch – this is Beth’s main source of pain control – about $150/month. Without it the pain becomes unbearable – Beth sleeps interrupted with teeth clenched and muscle and bone pain all over. They take about 12 hours to work and last about 2 days. We have to change them regularly so that she’s never without the drugs in her system.
Tramacet – Beth’s breakthrough pain medication. This pill takes about 20 minutes to kick in and really helps on bad days and in the mornings to get her full hours of sleep.
Tramadol – Beth’s night pain pills – they cost about $50 a month, but we’ve got a month’s worth of samples at the moment.
Florastor – to replace the flora in the intestines and regulate bowel irritability ($30/month)
Birth control pills for both of us – as hormone replacement for Beth as her body isn’t producing estrogen and as a mood stabilizer for me.
Muscle relaxants – to ease some of the muscle pain before bed

Other basics –
Crest toothpaste and toothbrushes
Ear plugs – the orange foam ones from Flents that are rated 33 NRR
Gatorade powder or drinks – We have a giant tin of lemon flavoured crystals, but could use other flavours to break up the monotony
Dill Pickles and small manzanilla olives (stuffed with pimentos if anything) – to aid in digestion, moving things through the intestines
Grapes and grape juice – to add soft fibre to her diet and keep her regular
Gasoline/petrol for the van to take Beth to appointments, getting me to the grocery stores, etc.
Haircuts – neither of us have had one since spring
Clothing – due to Beth’s edema there are very few of her clothes which still fit her. She could really use some underwear, thick socks (does anyone know how to darn wool ones with holes?), and comfortable clothes to wear during the day. Sizing is a bit tricky, especially with leg length, so if you want to help, please let me know and I’ll give you more info.
Batteries – AAA and AA
Lifeline response phone service - $24/mo

If you want to help, but don’t have any disposable income, another way to help would be to transfer loyalty points if you have them. Ask and I’ll give you the account numbers.

I have the following Canadian loyalty points cards:
Airmiles - I often trade in for gasoline coupons and the occasional Starbucks card so that I can go out and have a treat sometimes when the homecare workers are here.
Save On Foods – for groceries or gas
Thrifty Foods – for groceries
Shoppers Drug Mart Optimum – for over the counter meds (muscle relaxants, emla topical cream, etc)

In the US, I have:
Albertson’s Preferred – for when I’m in Port Angeles, WA
Rite Aid Wellness + - for when I’m in Port Angeles, WA

I know we are not the only ones having a hard time financially, so if you can’t help, please do not feel bad. You could provide the emotional help – an encouraging letter or card in the post. Or a photo of you so that Beth can be reminded who you are and feel connected to someone.

My next task is to see if I can get more hours of homecare workers so that I can spend more time on job hunting and find that stable income and with any luck, some medical benefits, too.

A little miracle

2010-08-25T23:06:00.000-07:00

When we came back from our road trip we noticed our portable air conditioner in the living room wasn’t cooling like it used to. It was four years old and pretty much goes 24/7 all spring, summer and fall. It has done a remarkable job cooling down all of the apartment (except for the study which has its own a/c) for such a long time. It not cooling properly really had me worried – I couldn’t afford to buy a new one, could I find someone to repair it? How much would that cost me? We couldn’t live without it – Beth would really overheat when she left the study. And a heat wave was on its way.

I called all the air conditioner businesses and they all said fixing a portable wasn’t worth their time. Go buy a new one. When I explained I was unemployed they still didn’t change their mind. Finally, I found an old guy who repaired appliances. He was probably around 80 years old, had very limited vision and puttered around outside his shop. He and I spent a couple of hours taking the a/c apart and cleaning it out. Fortunately, he didn’t charge much. The a/c was working a bit better, but still not cooling like it used to.

I was telling my friend here in Victoria about it on the phone one evening. We were arranging when to meet up for a cup of tea. It was my turn to host – and we were going to try out some of the tea we bought at Chado’s in California. A day or two later she was forwarding links to a/c ads and asking me which was closest to the one I currently had. When she arrived a few days later for tea, she said she needed some help getting something out of the vehicle, and to bring my trolley.

Apparently we have a guardian angel. One of my friend’s connections bought us a new portable air conditioner which was a new version of our current model. It was amazing. Someone who has probably never met us found out we had a need and they filled it. It was humbling. It took a huge weight of worry off my shoulders. And it was easy to install – just had to take it out of the box and switch the air vent from the old a/c to the new one. No fitting hoses and panels into the window. It was all already there. We set it up in the middle of the heat wave and it has made a big difference to Beth’s quality of life. Mine, too, as I spend most of my day in the living room. It works so well I’m usually wearing a sweatshirt inside. And, with the help of a couple of fans, the cool air reaches the bedroom and bathroom. This is a big bonus as when it was hot Beth would go into heat exhaustion sitting in the bathroom and in the bedroom I couldn’t wake her up because she would be so overheated.

It has been a few weeks and the air conditioner is still working great. I don’t know who was so generous to buy us the new air conditioner, but I am very grateful. What was an impossibly huge expense for me was possible for someone else. Their generosity was a real miracle. Being unemployed and trying to live off employment insurance cheques is pretty difficult. There are always decisions to be made as to what can we live without. After paying rent, groceries and medications, there isn't much left. There's no way I could have replaced the a/c on my own.

So, guardian angel, if you’re out there reading, I just wanted to say ‘THANKS!’

News From the Road

2010-07-28T10:39:00.000-07:00

Hi All

Cheryl here...

Just a real quick blog to update you on Beth and the San Diego adventures...

The camera was found! That was a very happy moment.

We DID ComicCon and some sightseeing. Beth is pretty tired by this point so it may be a day or two before she updates her blog. I'll let her tell you of her adventures.

The Case of the Missing Scooper Plates

2010-04-09T00:37:00.000-07:00

Thanks to everyone who sent medical supplies. I tried to send personal emails to all, but may have missed a few. Sorry about that! All the supplies have been really useful. Your generosity has been appreciated and I don't think I'll ever need to buy chapstick, aspirin or echinacea again. Ear plugs and florastar, on the other hand, we can never have enough.

Someone kindly bought some of these blue scooper plates this past winter but they never arrived. If you ordered them and had them sent to our address, you may want to contact the seller to see where they went missing.

Someone also bought these sandstone scooper plates and they haven't arrived either.

Can you solve these mysteries?

Ready... set...

2010-02-14T01:05:00.000-08:00

For those of you who read Screw Bronze, you’ll know that Beth has a dream to go to Sakuracon in Seattle April 2-4th. Cheryl and I would love to make the dream come true (we want to go too!) and think with your help we can make that happen.

A few of her readers have emailed her to ask how they can help. So we thought it might be useful for everyone to see what our expenses are. I’ve also put deadlines next to items if applicable.

Convention Tickets - $150 by March 8th – Beth committed to sell books on Amazon/ebay to pay for these.

Hotel – 3 nights - $520, $30 parking – reserved! It’s Easter Weekend so we wanted to get our room before it’s too late. We’re staying at the Holiday Inn in downtown Seattle. It’s far enough away from the convention that it’s relatively quiet and will give us a good night’s sleep. It has suites and depending on the room type, free continental breakfast. It is also more reasonable than most other hotels.

Coho Ferry - round trip (Victoria – Port Angeles) - $151 – reserve ASAP! This year we need to take NDY, Beth’s power chair as she’s too weak to hold herself up all day. NDY will give her full back and head support and also has tilt and recline in case she has seizures or is too weak to stay upright. With a minor tilt she is cradled in the chair. We need to take our van as NDY won’t fit into Cheryl’s Jeep. We take the Coho ferry from Victoria to Port Angeles and then spend the night at Cheryl’s. Then we drive across the Olympic Peninsula and catch the Washington ferry to Seattle. The Coho has a limited number of reservations for each sailing and as this is Easter weekend we want reservations. The alternative is to arrive at the terminal and park the vehicle the night before and then walk/roll down the next morning several hours before the ferry leaves. This would really wear Beth out.

Gas - $60 – we’ll pick up the cheaper American gas in Port Angeles.
Washington Ferry – round trip (Bainbridge – Seattle) - $40 – need to take this ferry to get from the Olympic Peninsula to downtown Seattle.

Parking – $24/day reserved at least 30 days in advance (March 1st) at the Convention Centre = $75. This will cost about the same or less than getting a taxi that takes the three of us and NDY, Beth’s power chair. Having it at the Convention Centre means if the noise and people get too much for Beth (or Cheryl or I for that matter) we can sit in the van for a while and chill out. I need to check, but it may even let us come and go multiple times a day which would mean we could go back to the hotel for naps and return in the evening.

Food - $200 – we will buy groceries at the grocery store nearby our hotel and this will cover most of our meals. We usually have take out one night for a change.

Costume for Beth – to be determined – but it’s gotta be hot! Suggestions are welcome. One reader suggested this black lace dress with a corset bodice. Beth would also like me and Cheryl to dress up a bit. She has offered to share her hair accessories with me. We’ll see how that goes.

Spending money – Beth and Cheryl want to go back to the dealers who were selling $2 and $5 manga as well as the art books and sellers of Japanese merchandise. Last year Beth found some great gifts that she sent out over the course of the year – items (clothing, stationery, etc) with Boots the cat were really popular.

If you would like to help out, please let me know at linda.mcclung at shaw.ca or use the donate button to the right. If you are planning to join us at Sakuracon, could you email me as well so I can keep track so we make sure we don’t miss anyone?

Cheers

Not Enough, Never Enough…

2009-12-14T11:06:00.000-08:00

Go ahead and fill in the blank after enough. There are many words that will do. In my case I will just look at the three that I feel are having the biggest impact on our reality.

Help or Assistance

From the medical community we get delays and excuses, “You are too complicated. It’s not my area. I just feel we need to run more tests before I can sign off on anything.” No effort is made to address symptoms or provide for basic relief from pain, anemia or a hundred other things that detract from quality of life and therefore from quantity of live.

From the caregiver agency we get told, “This is all the hours you are allowed. Family has to fill in for the rest of your needs.” The fact that there isn’t an extended family available to help doesn’t matter. There are two of us in this family who are regularly here helping. Linda provides the majority of care as she also works full time. I come on weekends and do what I can to help Beth and give Linda a chance to have some non-caregiver time. The non-caregiver time for Linda often doesn’t work out as it takes both of us to care for Beth.

Money

If we had enough money we could have taken Beth to specialists early on in this illness and possibly have some treatments and diagnosis. If we had enough money we could provide a more disability friendly home environment. If we had enough money we could have all the hours of quality care giving we need. If we had enough money we could make more dreams realities and have more moments of joy. If we had enough money Linda and I could be on leaves of absence to be with Beth.

Time

There is never enough time. There’s not enough time to just spend together. There’s not enough time to help Beth complete tasks she wants to do. There’s not enough time outside of work when I can be here. There’s not enough time to know this amazing person. There’s not enough time to not feel constantly pressed for time and resentful of things/circumstances that use what time there is. There is never enough time for Linda and Beth to just be together. No matter how much time there is, it is never enough.

Flowers of Hawaii - Part 2

2009-11-11T18:35:00.000-08:00

This entry will have plants and trees - with and without flowers - real and imaginary!

Beth took this photo at sunset at Waikiki Beach. The banyan tree was pretty common around Hawaii. This one was huge. In the town of Hilo (near where we stayed on the Big Island) they had famous people plant banyan trees - Mark Twain being one. I think there is a tree there that started as a cutting from a cutting from the tree Buddha supposedly planted back in the 6th Century BC.

But back to the island of Oahu... the next morning we went to the Byodo-Inn temple, which was a replica of a famous Japanese temple. To reach the temple we had to go through a cemetary. Along the way we stopped by this egret perched on flowering bushes who was so close we could have reached out and touched.On the temple grounds we found mini bamboo forests. This particular forest intrigued me, but it was the sign which caught my attention. Okay, I admit, I have a weird sense of humour. But really, wet floor? I never considered grass to be a floor, nor needing a sign.I enjoyed playing with the sepa setting on my camera. I thought it made the bamboo forest seem even more exotic.On the Big Island, between the tide pools and the evening hike to see the lava flowing, we stopped at the Lava Tree State Park. There was a lot of greenery.Here you can see the chasms created during an eruption in 1790.But the lava trees were what I had come for. Lava trees form when flast flowing pahoehoe lava encounters wet 'ohi'a trees. As the flow drains away, it leaves a thick coating around the dying tree. So really, you aren't looking at trees, but what formed around the tree. The trees themselves died long ago. In this picture you can see two small trees and around four stumps.Here is a bird's eye view of where a tree used to be. I'm not sure what these plants are. The yellow 'flowers' reminded me of bullrushes. Any ideas on what this one is called?

I don't have names for the rest of these flowers. Please jump right in if you do! I'm not all that knowledgeable about plant names, but this reminded me of a morning glory. This was a delicate little purple flower. I much prefer large, fat flowers to tiny.
This red flower looked like it was growing horns!
My guess for this one would be burning or flaming something or other.These cut flowers we found at the market. They grow in the wild in Hawaii. Still hard to believe I was in such an exotic place that grew these flowers and I didn't have to visit a florist to see them. There's a Chinese couple who have a flower shop 2 blocks from where we live in Victoria. I often stop by to pick up a little boquet of flowers for Beth to look at during the day while I'm at work. They have the best selection. When I was in the shop last week I saw they had grown a number of orchids like these purple and white ones. Each plant had one orchid stem with a handful of flowers. And each plant was about $35. I never asked how much they were at the market in Hawaii. Probably a couple of bucks as there was a great supply of them.One of my regrets is not getting to the market earlier in the trip to buy lots of exotic fruit. I'm not very adventurous when it comes to eating, but did try a fresh pineapple (I could smell them from about 20 feet away), star fruit (the sour variety our driver in the Waipio Valley picked for us) and papaya. The market had huge papaya's 4/$1. I found some in our local grocery store the other week and they were about $4 for 1. The papaya tasted okay, but I think I'd stick with the pineapple. They will never taste or smell as good as the one we had in Hawaii.

Flowers of Hawaii - Part 1

2009-10-19T22:08:00.000-07:00

When we first arrived on The Big Island we had a few hours to kill before our rental van was ready. While we waited we looked through the tourist literature and looked at places to visit. Beth found a botanical garden and said we should go there so “Linda can take pictures.” I told her I wasn’t into flowers so much that I needed to visit the botanical gardens.

Those words came back to haunt me as Beth and Cheryl had to wait while I took pictures of every type of flower I came across.

I was taking pictures of this pretty little plant which didn’t seem to mind all the sulphuric gases from the craters and steam vents.
These plants fared better than these bushes which had many dead and dying leaves and berries. The flower sure is pretty, and if memory serves me correctly there’s a myth about how Pele (the volcano god) turned a beautiful woman into the flower so that she could stay near her lover forever.

Flowers seemed to be everywhere. Orchids are wildflowers on the Big Island and grow in bushes along the side of the road like the one to our vacation rental home. So delicate.

Right outside our house were some hibiscus plants and there was only one flower on them while we were there. But what a beauty.

The hibiscus is the state flower of Hawaii. We saw two other types of hibiscus when we were in the Waipio Valley. These ones are called sleeping hibiscus because they don’t ever open.

There was also the more rare double hibiscus which our guide picked for us. The valley was the only place we ever saw these.

The Waipio Valley is where I was first introduced to ginger flowers. I never connected ginger root with big bushes with lovely scented flowers. We saw them in three colours: white, yellow and purple. The white had my favourite scent and was most appealing to me esthetically. I was so happy to find the hand lotion and some bars of soap in this scent. Thanks Beth for convincing me to buy the second bottle of lotion for ‘you’.

The yellow grew in big bunches and seemed a bit more spindly.

Then there were the purple ones which I didn’t even realize were ginger until I saw them in a store which was selling the roots.

Beth teases me about my exclamations when I find things growing or living ‘in the wild’ when the only place I’ve ever seen them before is in stores or conservatories. This applied to the flowers and also the fish I saw in the tidepools. I’ve seen these leaves in the conservatory back home in Winnipeg but didn’t know what they were.

Turns out they are wild tarot – and not edible like the domesticated tarot which is grown a lot in the Waipio Valley.

Speaking of flowers which are bad for you, the valley also has Angel Trumpets.

They sound, well… angelic but are anything but. They are very poisonous and if you touch them you really need to wash your hands and anything else that got in contact with them.

Here are a few other exotic looking flowers we found in the valley – of which I have no names for…

Please let me know the names if you happen to know what they are. This one is really strange and kind of gives me the creeps.
These are about half the flower photos. Will post the others on another day. Looking over the photos I took, I guess I was more ‘into’ flowers that I thought.

Making the Dream Reality

2009-08-30T12:58:00.000-07:00

It is finally happening… plans are falling into place and we are going to Hawaii in a few months! I normally plan vacations pretty thoroughly but this time there are more considerations as Linda and I also plan for Beth’s needs. I find myself making contingency plans to prepare for any breathing problems Beth will have when we go up Mauna Kea (13,000 feet in elevation). I surf the internet looking for all the disability friendly sight seeing opportunites on the Big Island. I have researched possible options which would allow Beth to snorkel with us. I make and remake packing lists to be sure nothing important is forgotten. I am looking forward to this trip and will cherish every moment and every memory.

On a weekly basis I see Beth grow weaker. I see her systems seemingly fail randomly and sometimes, just as randomly, begin functioning again. I am there with Linda as the pain steals her strength and her sanity. I watch as she uses sheer determination to push past the pain and LIVE rather than exist. I don’t have any idea how long it will be before Beth flies away. So, I work to build happy memories. I want Beth to know joy and love as much as possible. That’s why even when it seemed an impossible dream I started planning for the possibility of going to Hawaii.

Now that dream is coming together. We have our flights. We have most of our accommodations. We have a rental vehicle reserved. We are making lists of what we want to see. Linda and I are planning the budget to cover it all. We may eat a lot of peanut butter sandwiches before and during the vacation. We will certainly be stretched thin financially but, we will have the chance to make Hawaii memories with Beth and that is worth every sacrifice.

Elizabeth F. McClung needs you!!

2009-08-03T01:27:00.000-07:00

In the past 18 months, over 300 people have asked to be part of the Postcard Project – requesting postcards for themselves or their loved ones. We send postcards to over 400 individuals.

Last week I sent an email to individuals we had email addresses for asking for their help. If you’ve received and responded to that email there’s no need for you to read further. This blog entry is intended to reach those people who have never given us email addresses or have changed their email addresses and haven’t let us know.

It’s hard to believe that it was only last year that Elizabeth started the Postcard Project. It was just going to be a one-time deal, sending postcards to any of her readers at Screw Bronze while we were in Japan for our grand adventure before Elizabeth’s health prevented further travels. Well, several thousand postcards later, she’s still at it.

Unfortunately, every few weeks a postcard is returned as the recipient has moved. I thought it was time to update our mailing list so that Beth’s postcards and the energy she put into creating them is not wasted.

The Postcard Project is a really important project for Beth. She’s intimately familiar with loneliness and wants to do her part to change the world, letting others know they are not alone. She does this with her postcards. At first she did it all on her own but as her health has steadily deteriorated she has needed more and more assistance. In fact, there are weeks where she doesn’t get to stamp or sticker at all, just matching cards to people and writing all the comments. But she’s adamant about her motto – no one gets left behind! And if that means she works through the night, or falls over when she’s putting her weight behind some of the larger animal stamps, so be it.

Now this kind of freaks me out, to put it mildly. And I struggle between supporting Beth with her dreams of helping others and trying to put a stop to the dream because of the cost to her health. But I know stopping the project has an emotional cost – the postcards are Beth’s way of reaching out to others – and stopping the project would leave a gaping hole in her ‘community’ and feeling of self-worth as a human being.

So, I have a couple of favours to ask…

My first request is for you to contact me to let me know what you thought of the postcards, whether they have made a difference in your or your loved one’s life, and whether you/they would like to continue receiving them. Please be honest. If they brighten your day or your week we want to keep sending them to you. If they’re about as interesting as the other stuff in your mailbox, please tell us that too, so we can take you off the list and help conserve Beth’s energy.

Send an email to me at Linda.mcclung at shaw.ca or leave a comment here. If we don’t hear from you by August 15, 2009 we will remove your name from the list, assuming our information is out of date or that you do not want to receive further postcards.

I want to stress again that Beth really wants to send you postcards if you still want them. Don’t feel guilty about receiving them if they make a difference to you. You’re the one we really want to reach. It’s just that we don’t hear back from most people so have no idea how they are received. And I’m honest enough to admit that I sometimes wonder what’s the point and wish Beth would spend her time elsewhere.

But reading the responses from last week’s email, my faith in the recipients has been restored. The comments reinforced the difference that Beth’s postcards have made in people’s lives. They’ve inspired me to give Beth more help with the cards and less negativity. I’m also going to compile many of the positive comments into a word document that Beth can turn to time and time again when she is feeling alone and of little value.

My second request is that, if you are able, please reciprocate and send Elizabeth a postcard or note back. Her personal mail has gone down to a slow dribble and she’s feeling the loneliness of being indoors and alone most of the time. Receiving mail from you would really keep her spirits up. We put return address labels on the postcards, but I’ve included our post office address in case you may have misplaced your cards.

Elizabeth McClung
PO Box 2560
Port Angeles, WA 98362
USA

Thanks for your time and I look forward to hearing from you.

Fragile, Handle With Care

2009-05-31T01:48:00.001-07:00

That phrase seems to best describe all three of us this weekend…

Beth

Beth is frightened. Beth has been very sick and the changes in her from last weekend are startling and frightening. She is thinner and gaunt. She is weaker. Her skin is translucent. There is a sense of fragility as though merely touching her with my clumsy hands will break her. Beth has always had a BIG presence and now she seems smaller. There is urgency in Beth’s actions – a need to push to finish things. There are presents to send, postcards and letters to write. She has a need to do what she can to make sure Linda is taken care of. The universe is unfair, Beth is frightened and she is fragile.

Linda

Linda is frightened. She can’t stop the degeneration Beth’s illness causes. She can’t pretend that there will be a happy ever after and that she and her love will grow old together. So Linda throws herself into things she can control. She rearranges the living room furniture. She focuses on feeding us. She makes lists of what to do and prioritizes them. She makes a master list of the lists. Hers are the actions of someone trying to keep the fear at bay. She is trying to be strong, to be the anchor and yet she is wounded as well. The universe is unfair, Linda is frightened and she is fragile.

Cheryl

I am frightened. The changes in Beth from week to week are no longer subtle. I stay up much too late during the week reading medical journals on line and looking for anything we can do to improve Beth’s quality of life and her quantity of life. I wish I could take an extended leave of absence to be here more. I count the weeks before my workload eases enough for me to be granted more leave. I hate the 18 miles of water that puts limits on how readily I can get to Victoria if/when needed. I hate the uncompassionate and apathetic healthcare Beth receives. I hate the lack of wealth that keeps us from seeking medical help in other places. I am trying to be strong, to be someone Beth and Linda can lean on. Yet my emotions are so near the surface. The more I try to control them and keep them in, the more they break through. I am frightened and it makes me snappy. I am frightened and it makes me sad. I am frightened and it makes me hurt. I am frightened and I cry.

The universe is unfair, I am frightened and I am fragile.

Constants, Changes and Boundaries

2009-05-16T19:17:00.000-07:00

I have been doing a lot of thinking about how Beth’s life is now. Of course this is all based on my perceptions and Beth most likely has a somewhat different view. Well, I can’t speak for Beth or Linda so my perceptions are what you get.

At this time there seems to be two definite constants for Beth – fear and change. I hope there is a third constant of love from Linda, me and the extended family Beth has built through her blog but I think the fear often overrides the feeling of being loved.

Fear is Beth’s constant companion. With her memory problems increasing and her regressions, much of what we take for granted is lost to her. She often doesn’t recognize this apartment. She doesn’t know who the careworkers are, doesn’t understand why she is sick and has to use a wheelchair, doesn’t understand why strangers keep telling her what to do. Imagine being a toddler lost in a gigantic crowded shopping mall and you might get an idea of what the fear is like. When Beth is not regressed the fear is still there. It is the fear of what happens next with her condition: fear of overheating, losing more function, losing cognitive abilities even more, never being treated, never being taken seriously by the medicos. There is fear of being abandoned by everyone or of being institutionalized.

Adding to the fear and often fueling it is change. Beth’s condition fluctuates, often quite dramatically. During good periods she can do 10K’s, visit the park, play badminton write or talk on many complex topics and conduct in depth research. During bad periods she becomes very weak and loses cognitive abilities. These are the times when she is too sick to muster the energy to leave the apartment, go to the doctor or finish simple tasks.

Beth can go from the good periods to the bad periods in the course of a few days, a few hours or even a few minutes. I have been conversing with her and over the course of 30 minutes she loses energy, cognitive ability and regresses. I started out talking to adult Beth and now I am talking with the 5 year old who doesn’t understand what I am saying. It is these periods of rapid regression which cause the most anxiety and fear. I (or Linda) am dealing with Beth as I would with any adult. By the time I realize that I need to switch to dealing with a 5 year old I have made Beth upset and frightened. I am trying to learn to pick up on the cues to Beth regressing to avoid causing the fear.

As part of learning to interact in ways that don’t increase Beth’s anxiety I have become very aware of boundaries. We all have a series of boundaries that are part of how we interact with others. There are people in my life who I am more comfortable with. I have different boundaries for them compared to casual acquaintances or co-workers. I trust people who respect my boundaries and am suspicious of people who ignore them.

For Beth boundaries are important. With the medical stuff she has lost many choices and people touch her often, regardless of if she is comfortable with it. When she goes to bed she is hovered over as we watch for seizures or to be sure she keeps breathing. She has no privacy in showering or being in the bathroom. A lot of the boundaries have fallen victim to her illness. This is why it is so very important to respect other boundaries Beth has.

There is just one area where Beth seems to be unable to set boundaries – when she perceives that someone needs help. Beth is the most giving person I have ever known who always places herself last. This means there are times when Beth will stay up all night emailing people who are having a tough time even though it costs her so much energy her body can’t manage to breathe without prompting.

If I am having a bad time, need support and I keep it from Beth that hurts her. She wants to be there for me (as well as other friends who need help). I just have to balance it so that Beth doesn’t make herself weaker/sicker in the course of being there for me. I have to remember that while Beth can help me I also need to help myself. Just as it is important to Beth that I know she cares, it is important to me that her caring for me not push her closer to hospital.

Hmmm… it would seem I have some tasks.
Help Beth feel that being loved is also a constant in her life.
Understand the cognitive and physical changes Beth goes through and react in ways that reassure her and make her feel safe.
Be aware of boundaries and honor them. Place boundaries to help Beth put her health first more.

Well this blog post seems to have gotten quite rambling. Thank you for letting me sort out my thoughts. If they have helped you as well then that is even better.

Fundraising update

2009-03-26T04:08:00.000-07:00

Beth and I have had a busy couple of weeks trying to raise some funds.

Manga on Ebay

Beth and I spent most of the last week listing over 60 items on ebay. It’s a lot more work than it looks like and definitely a team effort. Beth and I sort through the manga she’s read into what’s to keep and what’s to sell. The sell pile then gets sorted into different days items are to be listed. Each day either Beth or I take the photos and weigh the manga sets. Beth or I resize the photos and I calculate the postage. I start a word document entering in the name of the manga set, the weight, postage rates and the ‘fine print’ which Beth wrote last time we sold manga. Beth is the one who lists the items on ebay, she copy and pastes the info I put together and then writes her own summary and review of each manga set. She also finds or writes reviews to add to the listing. It’s not what most sellers do, but we’ve found that people are more willing to bid on an item if they have positive reviews to read.

Beth’s part is the most difficult part of the process. And it has come at a great cost to Beth’s health. I watched Beth spend multiple hours each evening listing the items. She’d do it no matter what physical condition she was in – nauseous, lots of pain, eyes not focusing, weak from sitting in the bathroom for hours, fingers blue and drifting in and out of consciousness. Emotionally and mentally there was a cost, too. The listings were done in the evenings. As evenings progress Beth’s cognitive ability deteriorates. When she’s really tired, which she was, she doesn’t know who she is, her brain can’t comprehend the words that I speak, and what she speaks comes out slurred at best and jibberish at worst. But even if it slows so that she has to concentrate for each movement and putting up a listing goes from taking 8 minutes to taking an hour, she simply won’t stop. When she is done I try to take her to bed. She says, “I can’t understand you” (A couple times she lost the ability to understand language), and she points to the computer, opens up her blog and starts writing comments. Will she understand me if I pull my hair out sideways and scream I wonder? Why is she SO stubborn (she calls it ‘driven’)!! And why can’t she trust me to take care of her?

I am always torn because I know she needs the money and it will boost her spirits when stuff sells, but I could see it was really making her really sick. So as the days went by, as she worked for hours for 9 consecutive days, I changed from letting her do the listings and adding in the weights to doing that for her, then doing the photos. But I hadn’t read the manga so couldn’t write the review and had no idea what to start the bidding at for each set. After six days of working so hard Beth asked if she could leave the rest of the manga for another sale later in the year. I quickly said ‘yes!’ as it just wasn’t worth the physical costs Beth was having to pay. I was relieved Beth wanted to stop as she’s a very driven person when she feels responsible for something. And she was feeling very responsible for bringing in the money and pushed herself too far. I think asking for permission to stop was a hard thing for her to do but I am very glad she did it. Of course then she just ‘added a few more’ for the next three days in order to bring it to 62 lots.

We’ve timed the items to finish on Friday, Saturday and Sunday night this weekend. Once they’re done Beth will spend more time and energy sending invoices and following up with winners and I’ll prepare the items for mailing. Some packages Cheryl can take back with her but I will be mailing most of them later in the week.

The bids are slowly going up which is encouraging. Most only have one bid on them so far. If you are interested in buying some manga you can check out our listings on ebay. Our seller name is l-bstuff. You may notice that a few of the manga we’ve received as gifts are listed. We hope the gift-givers are not offended (Beth is worried about this, selling a gift she has read). I hope you feel that you’ve given two donations for the price of one! Beth enjoyed reading the manga that you sent and now she is turning it into cash for future use.

Beth will take half of the money earned to repay an old debt and a quarter will be used to pay for items relating to the postcard project already waiting (an email correspondence from Feb 20th turned into an invoice 2 days ago). The remaining quarter is up for debate. Beth could have a reserve to use for future purchases. But Beth wants to give me the money to put toward the van repairs. The ‘check engine’ light has been on the last two weeks and to get it to go off we have to get one of the oxygen sensors replaced (over $200). I, on the other hand, am hoping Beth will take the money and put it towards the Sakura-con in Seattle next month.

Books, Books and More Books

This is a fundraiser for medical expenses… on Saturday there is a garage sale at the local seniors centre. They have one a couple of times a year and I’ve been going with Beth’s books or book fair stock from the UK each time. I manage to sell about a box each time. This year I’ve bought two tables so am hoping to double my income – or possibly even more because I’ll have more space to display the books. Over the years doing dozens of book fairs, we’ve found the more books people can see and flip through the higher the probability they will buy something.

When I mentioned to Beth that the sale is this weekend and said she wants to pick out more of her books to sell. That means going through boxes of books, looking some of their values up and then pricing them. Even if I do the heavy lifting, I don’t think she has the strength to do this work. The way she pushes herself really scares me sometimes and I just want to take her away to a safe and financially secure place where there is no need to work and she can just rest. For now, I am trying to convince her I have enough books already priced that it is not necessary to do the extra work.

I’m thinking of taking the laptop with me to the sale and if there is a quiet time, compile a list of the books, their ISBN and their price. As several readers mentioned they’d be interested her books, I thought I’d put a list together on this blog and those who are interested can browse through it to see if anything strikes their fancy.

This and That

I’m also planning on having a garage sale (well, a curb-side sale seeing as we’re in an apartment block) in April or May. There are some things in storage that I want to get rid of and some other odds and ends around the house that are just taking up space. I may even sell a couple of old kitchen chairs which belonged to our previous table and are currently scattered throughout the apartment. More space is needed to make room for the mobility devices Beth has in order to get around.

I advertised the old powerchair we were given but almost never used and have someone coming to take a look at it tomorrow afternoon. Fingers crossed that he will like what he sees and takes it away leaving behind some cash!

Donations

I’m looking forward to going back to work soon. My GP is looking at me returning after Easter. This is good news as I really miss having a full paycheque. It has made things especially tight the last few months and I want to say again how much I appreciated the donations people have given over the winter. I think many people are having a hard time financially during this economic downturn. Because of the hard times, any donations people give mean even more to Beth and I as we know how much incomes have to stretch. We do not want anyone to go without basic necessities so if you want to donate to the medical fund, postcard or other purposes, please only give what you are able.

Thanks again and I’ll give an update next week on how the auction and book sale went.

The importance of daffodils

2009-03-05T18:31:00.000-08:00

I thought I'd take a few minutes out of the daily grind to write about something beautiful. Spring has started to arrive here in Victoria and I couldn't resist going out and taking some pictures of the crocuses and daffodils outside of our apartment. While crocuses like this one are the first sign that spring has arrived for most people, to me it is the simple daffodil which shouts sunshine, joy and hope. Not only are daffodils one of the first flowers to bloom in spring here in Victoria, but they have been present in so many 'firsts' of my life.

My first encounter with daffodils was on my first job in Winnipeg. Winnpeg is a few miles off of the longitudinal centre of Canada. Basically this means you're a couple thousand miles from oceans - the Pacific and the Atlantic. Because it is in the southern portion of the province, it also happens to be about that far to the Arctic Ocean, too. That translates to extreme temperatures - intensely hot in the summer and bitterly cold in the winter. And winter lasts longer than spring and summer combined.

The social committee at my work was promoting a fundraiser for Cancer Research, an organization that uses the daffodil as their symbol. I donated some money to purchase daffodils and weeks later they arrived. Here it was, the middle of winter, snow had been on the ground for months, the temperatures were in the deep freeze and I had these bright yellow flowers on my desk. They gave me such joy and hope for the future. It makes sense to me why daffodils are the symbol for that particular charity. My second encounter with daffodils was during my first visit to Victoria to see Beth and check out whether I wanted to live here. I believe it was late March or early April and daffodils were everywhere. On the journey from the ferry terminal in Sidney to Victoria, I saw fields cultivated with daffodils. This was a foreign concept to me, prairie girl that I am. Fields were for hay, for corn, wheat and other grains. But flowers? Amazing.

In Beacon Hill park, a few blocks away from where I was staying and where we currently live, the hillside was covered in daffodils. Most yards had daffodils blooming too. All these beautiful sunny flowers. It was a huge selling point for me to move to Victoria. Beth was number one, but I think the presence of daffodils and the lack of mosquitos were tied for second place!
The first time my mom came to visit me in Victoria was also in spring and I took her to see the hillside of daffodils and from that visit forward my mom thinks of me whenever she sees a daffodil. It's a special connection, I think.

That connection was also reinforced when I announced that Beth and I were moving to Wales so that Beth could pursue her PhD. For those who don't know, daffodils are the nation's flower. And on St. David's Day on March 1st, the girls traditionally wear daffodils. (The guys must have drawn the short straw because they wear leeks.) Daffodils were plentiful in Cardiff where I lived. They reminded me of Victoria and my mom out in the prairies. And there was that cheerfulness about them that always brought a smile to my face.

When we decided to move back to Canada there was one thing which I wanted to take back with me. I had always lusted over the carved Welsh Lovespoons. A few days before we left, Beth took me to one of the Welsh Lovespoon shops and I picked out the perfect spoon.Here in Victoria, it is daffodil season again. I feel so fortunate that I can buy two bunches of daffodils for the price of a cup of coffee and bring sunshine into our apartment. Daffodils remind me that there has been difficult times before, but despite any adversity (weather, moving across continents, illness or finances) there is always something to look forward to.

Thanks for the prezzies

2009-02-27T02:41:00.000-08:00

Hi everyone,

Just a quick update to say thanks to those who have contributed to the medical fund. It means a great deal to me as I've been worrying about finances a lot lately.

Sometimes to avoid the worrying I've been escaping into the books people have purchased for me off the Amazon wishlist. I've got enough to keep me going for some time.

So many of you have purchased stuff for both Beth and I and I am always amazed. A special thanks to the person who bought me the George Foreman Grill as I now have a renewed interest in preparing meals. So far I've made burgers, hot dogs, steak, chicken fingers, french fries, grilled cheese sandwiches, quesadillas and grilled vegetables. The french fries were a little wimpy but everything else tasted awesome. The steak, burgers and hot dogs taste like they came straight off the gas barbeque. And boy do I miss having a barbeque! Just ask Beth!

Cheryl showed me a trick to cleaning the grill which I have improved on so now it's quick and easy. For those of you still struggling with this one, I suggest that once you're done cooking and have unplugged the grill wet a couple of paper towels and lay them in the grill. As the grill cools the towels steam the plates. When the paper towels are cool enough to handle there is just a little wiping to do - no elbow grease required.

Beth mentioned that my stuff on the wishlist has all been purchased and suggested I put a few more on. As I've got enough to read I thought that if people wanted to give me anything they could purchase a gift card for me from www.shoptoit.ca. This is for every day stuff that I could use some assistance on...

Shell - gas/petrol for the van
London Drugs - I buy all of the prescription and over the counter meds for Beth here
Walmart - They have the cheapest powerade/gatorade and when Beth drinks 2-3 a day it adds up!
Safeway Canada - One of the two places I buy groceries

Thanks again for all your generosity to date.

Linda

Seattle, here we come!

2009-02-23T03:16:00.000-08:00

The big news I have to share is that we’ve finally got an appointment at the Booth Gardner Parkinson Centre in Kirkland, Washington (a little north of Seattle). They received all the admissions paperwork we sent them just over a week ago which allowed us to proceed to the next step – making the appointment.

They had a cancellation on March 10th so it was available to us. Unfortunately, when I told them Beth’s brain MRI was on March 9th and we wouldn’t have the results back for at least a week, they had to move us to the next available appointment which was April 6th. So our appointment is on the morning of Monday, April 6th – six weeks away.

Six weeks seems like a long time, especially since we’ve been trying to get this to happen for at least six months. Referrals, tests and paperwork all take time.

I expect I will be working through a great deal of anxiety between now and then. There’s also frustration that it’s taking so long. And lots of ‘what-ifs’. What if it really is MSA – what can be done? Is it too late for any treatment? What if it’s something else? Or worse – what if they say they don’t know or like here, simply refuse to do anything. Ideally we’d like to come back with a diagnosis, prognosis and a treatment plan (particularly pain management if nothing can be done to prolong life).

During the next six weeks we also need to raise some funds. Our provincial healthcare system (HIBC) has received the letter I asked Beth’s GP to write requesting funding for the consultation. They responded to the GP requesting he ask the neurologist to make the referral and either the GP has not forwarded the request or the neurologist refuses to make it. The GP said it was the latter, but I’m not sure if he even asked.

That means we’re on the hook for the cost of the trip and consult. There is the possibility that if we come back with a diagnosis we can get a new neurologist and they can complete the paperwork for reimbursement from HIBC – but for now we’re it. Beth’s current GP is refusing to make any referrals until after Seattle.

A relative has volunteered to use their reward points for accommodation for us and this will be a big help IF it is possible, if not we will hae to come up with several hundred dollars very quickly as we’ll be in the Seattle area for two nights. We’ll also be staying at least two nights at Cheryl’s to break the trip into manageable days for Beth. The consult and hospital fees will cost up to $750 (tests are extra) and then there’s travel (ferry and gasoline/petrol) and food expenses. That's if they get everything they want done and don't want us to return. More than likely they will want specific tests and then a follow-up. Another $1500? Another $2000? It just seems so much...

Our savings from donations has been chipped away at for the ongoing medical expenses, like several hundred going to keep pain in a 'sane' level of pain instead of screaming all the time. $150 every refill, same with autoimmune protectors and the other drugs just since Jan. There there are the other medical expenses (like Wheelchair Ramps) while I’ve been on sick leave (reduced pay) so we need to build that fund up before April. Beth has been donating part of her allowance toward putting money in the fund. We want to sell some stuff we don’t use anymore (Beth is selling her bicycle and skis, and trying to find the right auction house for a water-coloured steel engraving of a Scottish archer. I have decided to sell my electric piano Hohner keyboard). I’d love to find a book fair to sell some books we sorted out but I don’t think there are any around. Maybe I could list some books here if there is any interest from any of the readers.

Cheryl and I went through our red wine collection this weekend and have an amazing selection which I thought we could resell. Unfortunately, we found out that it’s illegal to resell, auction or give wine away in BC. I think it’s the government’s way to make sure they maintain control of the alcohol industry. Too bad as we’ve got a lot of wines I am sure are not available in liquor stores here. It’s frustrating because it would be an easy way to bring in some cash.

Also, if you are still interested in buying Beth’s book, Zed, I still have a few copies. Ditto with the wristbands – we still have a stock of them, too. Laura may also have some T-shirts for sale. As always, your donations are gratefully received. I honestly don’t know how we would have survived so long without all of your help.
I plan on giving you all regular updates as the countdown continues. And I’m sure we’ll bring our laptop to Seattle so that we can give you the news as soon as we have it.

In the meantime, we’ve got a busy week ahead. Tomorrow we sign the wills and power of attorneys, Tuesday I head to Port Angeles to pick up the wheelchair ramps I ordered on ebay (about 60% cheaper than buying from a local medical supplier), Wednesday we each have a medical appointment and on Friday afternoon Beth’s power chair arrives. They are going to do the programming (speed controls, joystick sensitivity, etc.) and hopefully the chair will stay here when they’re done. We’re really looking forward to Beth being able to use it. A busy week, but we really want Beth to find times to relax during it (no, that wasn't a joke, even though there are new home workers to train, and where is she going to find time to list items for sale?)

I'm sorry about the 'Bad for being scared post'

2009-02-19T15:13:00.000-08:00

I have deleted my post of this morning. Last night was very scary time for me. Beth was getting worse and I was feeling helpless. And when I am feeling helpless I either try to escape or control. I tried a little of both last night. But ended up still feeling helpless, scared and frustrated. So I tried to figure out how I was feeling by putting my words down on ‘paper.’ I published it because I wanted ‘a voice’, I wanted someone to hear all those screams of emotion going on inside my head. I loved Beth very much

The bleeding in Elizabeth’s ear scared me a lot. It was an ‘automatic go-to-hospital’ event. And yet Elizabeth wouldn’t. And she kept using q-tips when I told her not to, because I was scared and just wanted it to stop. Cheryl and Beth determined that it was likely that a spike in blood pressure ripped the eardrum. But all I could see was the blood that was coming out.

Beth didn’t take a break when we got up from the nap; she wrote emails. The worse she got the more emails she wrote. As time passed and there were even more emails, more passing out, her actions made me frustrated and angry. But the anger went away when Beth told me that she needed to let people know because she was scared she was going to die. She was on oxygen, and I had to use the ambi-bag but she wouldn’t go to bed. She was scared that if she died people would never know that she was thankful for their help, or that she cared. I knew she had already sent emails telling people these things, but with her memory and brain damage she did not. She could feel my frustration and asked, "Am I a BAD person for being scared?"

I kept a close eye on her as her hands turned black, as she had to use the oxygen re-breather but I didn’t stop her as it was important to her to leave these messages. But my feelings of frustration and helpless grew until I needed to write them down. To have someone, anyone listen to me.

Beth finished, and I pushed her to the bathroom. She had wanted to write a note to Cheryl but forgot, so as I helped her she kept say, "Tell Cheryl I love her. Tell Cheryl I love her."

I will be with Beth today as we promised each other than if Beth woke up, we would have an ‘us’ day. I am sorry I ended up deleting the comments from the other post, but that wasn’t the story, that was my scream of frustration. And to leave that up, would only hurt Beth, because being sick isn’t her fault. But it sure is hard to stand by helpless.

Concerns

2009-02-07T14:28:00.000-08:00

It feels like a Ghost Town and I am a bit worried…

Since I posted my quasi-rant about energy vampires the number of comments to Beth’s blog and the number of friendly, checking in emails have dropped way off. They’ve dropped way off to the point where it is really bothering Beth and she is feeling somewhat abandoned.

I really didn’t mean for you, our friends in this blog community to go away. Please do email Beth and write comments to her. She may not always be up to answering but she still needs and wants to hear from you.

The Angry Caregiver

2009-02-04T03:37:00.000-08:00

No not Linda… I, Cheryl, am the angry caregiver. I am dealing with a goodly amount of anger, resentment and frustration at the moment. I think I am in Mama Lion mode.

The phrase that sums it up is the one I said to Linda earlier this week… “I am doing my damnedest to keep Beth alive and people keep messing me up!”

I have had to use resuscitation methods to keep Beth breathing around a half dozen times in the last 24 hours. I have provided medical support through 3 grand mals and numerous partial seizures in the same period. This is way more than average for Beth at this point in her illness. The problem is the energy vampires.

Beth has very limited energy and it is dropping all the time these days. Not only does physical activity use up the energy but so does negative emotions and dealing with stress. The visit to the GP where we had to fight to convince him that Beth needs better pain management caused stress and sucked away energy. The extreme, unrelenting pain sucks away energy. The hate mail that shows up in her email from different sources sucks away energy. The clueless sales clerk at the bookstore sucks away energy. When the energy levels drop below a certain point Beth simply becomes too exhausted to expand her rib cage and breathe. She needs help so I or Linda do what is necessary to breathe for her.

Beth is struggling with quality of life issues. She has a rapidly changing condition with unrelenting and unrelieved pain. Every day her illness robs her of some aspect of who she was. Linda and I try to help her find reasons why she should keep going on and much of the time she wants to live and LIVE. However, there are times when the pain, changes, lack of energy and exhaustion make living seem like a very poor option. Sometimes after she starts breathing again Beth will ask why we brought her back, why won’t we let her go. At times I wonder if I am doing the right thing resuscitating her – am I doing it for Beth or for me? Then we get a good day and Beth tells me she is glad I “brought her back”. That helps, until the next time I am fighting to keep her breathing and begin to doubt again.

My anger, resentment and frustration stem from these things. I feel those emotions towards any person or event that sucks away Beth’s energy for stupid reasons. Emails and blog comments from you, her friends, are not in this category. Things that bring positive emotions to Beth help me in my battle to keep her with us. Differences of opinion which lead to open discussion and debate are good and I think Beth enjoys the intellectual challenge.

The things I resent and that make me angry are the email attacks that show up – the hate mail. I resent the emails from people who only email Beth when they need to have a place to unload their baggage and don’t seem to care how Beth is doing. I resent the time wasted in doctor’s offices where we receive no help and no indication that any help will happen. I resent time spent in meetings so we can be repeatedly told that they can’t help us. I resent the fact that the arbitrary rules about things like eligibility for palliative care are determined by the price tag rather than by the human need.

I am frustrated by the continuing problems of getting adequate pain management or treatment for problems like anaemia or even a diagnosis of some kind. No doctor or specialist seems to be willing to be the responsible one to make the diagnosis or state that Beth is terminal. I mean what if they are wrong? What if she lives 7 more months, not 6? Oh for fucks sake! Don’t they see how ridiculous that is? It’s just as ridiculous as claiming you can’t prescribe a stronger pain killer to a terminal patient because it can cause constipation. I say again… OH. FOR. FUCKS. SAKE!!!

Yeah I am an angry caregiver…

No Perishables, Please

2009-01-25T02:03:00.001-08:00

Hi everyone,

Just a quick note to let you know that all our mail is stuck in Port Angeles for two weeks while the Coho ferry is in dry dock for its annual maintenance. Please don't send anything perishable during this time as it will be all furry by the time we get it:)

It kind of sucks not having snail mail for two weeks but it means two things: Beth will have a weekend off from postcards and two, we'll have a nice pile awaiting us when the Coho is back on the water.

Thanks.

Courage, Fear, and Loss

2009-01-11T13:55:00.000-08:00

Hello, Cheryl here and I want to talk about Beth’s most recent post on Screw Bronze.

Beth did an amazing thing for someone who is fiercely independent and has always sacrificed herself for others. She is asking for help. That simple act of making herself vulnerable took an incredible amount of courage. She doesn’t ask lightly but she wants to live and she needs help to do that.

I know that many of you are hesitant to commit to one of the “chores” Beth has outlined because you are afraid of letting her down. I understand. I fear letting her down too. I look at how much she has gone through in her life and I don’t ever want to be in the group of people who caused her any pain and suffering. I just refuse to let that fear keep me from acting.

Abi suggested using a network system where a group of people agree to do a chore and then there is someone to cover when one person is unable to keep the commitment on occasion they can ask a member of their network to fill in for that time. I think it is a brilliant idea and will help people not over use their spoons or energy crystal lines.

Beth truly needs the help to change her habits. She keeps pushing herself at the same levels she did 3 months ago. Truth is she doesn’t have the reserves to do that. She doesn’t have the reserves to push herself at the levels of 3 days ago. She is rapidly weakening. I hope the Seattle doctors and some other referrals we are working on will get her some treatment to improve her quality of life and help with energy levels and pain management. We will keep you posted on that but Beth needs help NOW.

Yesterday Beth had a collapse. She required high flow oxygen from a non-rebreather mask (gets more pure oxygen into the patient) and I had to use the ambibag to breathe for her for a while. What concerned me was that her pulse was slowing and getting rapidly weaker. I was planning scenarios in case we had to do CPR while the ambulance came. I was wondering if this was going to be the end and praying that it wasn’t. Happily, getting the high oxygen concentration into her blood allowed her body to recover. Her heart rate is back to her normal for now. What brought on the collapse? We had a conversation. The simple act of talking for 20 minutes depleted her oxygen levels to the point where her body shut down and she was on low flow supplemental oxygen at the time.

I know we are going to lose Beth. I know it is going to be sooner than I am ready for. I know this loss is coming and I ultimately can’t stop it. That doesn’t stop me from doing what is necessary to let Beth live and LIVE as long as possible. Towards that end I keep trying to stack the deck in my favor. By having you help take on the tasks and make the commitments Beth has asked for, I can do a lot to stack that deck.

Here’s a video by Train that I think fits the situation. Listen, read Beth’s blog, search your heart and help as you can.

Oxygen, gifts and tears

2009-01-08T00:07:00.000-08:00

It arrived! I braved the steady rain to pick up Beth’s brand new Inogen One Portable Oxygen concentrator yesterday afternoon. It’s a great little machine – much quieter than the Evergo we had borrowed for the Seattle trip. Here are most of the components – the machine, the power supply, a carry bag and the cart it fits on for people who would walk with it.

What’s not displayed are the adapter to use the machine in a vehicle (via the cigarette lighter) or on an airplane. These I have but weren’t picture worthy. What I am also missing is the second battery and external power charger which were ordered but not included. So, I’ve got another phone call to make, sigh!

Here’s Beth breaking the machine in, while sitting at her computer.
The top and hoodie she is wearing are two of the great finds from our Seattle shopping trip and I think she looks hot it them. You should see the new jeans hiding under my grandma's afghan - very sexy. Hot clothes aside, every time I take a picture of Beth I am struck by how much weight she has lost - mostly in her face - and it makes me sad to see her wasting away.

Right now we’ve got the concentrator beside her which is a good thing as with the old concentrator being in a separate room, she would ask me to turn it on and I would forget and Beth would be working for hours while her fingers were getting more and more purple and white. With the Inogen being much quieter she now has the power!

While reading the manual – I know, I’m one of the weird ones who actually reads manuals – they mentioned a satellite setting. Umm, satellite? What happens – can it beam oxygen to you? Well, I kept reading and basically it’s like a pager which allows you to be in a different room from the unit and turn it on and off and adjust the settings from the comfort of your chair. The satellite accessory is the conduit between the extension tubing (up to 25 feet) and the cannula tubing which she breathes through. I may have to look into this accessory in the future.

In other news… we’ve received many gifts from you, our readers, over the last few weeks and I just wanted to say a great big thank you to all. I’ve devoured my cheesy romances over the last two weeks. I have little discipline when it comes to them so end up staying up half the night reading – occasionally Beth ends up telling me to go to bed. Talk about role reversal!

The MP3 player arrived on the day our one remaining MP3 player gave up the ghost. This caused a lot of stress in our household as the MP3 is used on a daily basis when the sounds of life are too much on Beth’s sensitive ears. While we were opening packages the neighbours were making a lot of noise next door. Beth was able to download the songs onto the new MP3 quickly which rescued Beth from the noise, removed the panic and reduced the urgency in fixing the old one. (Beth was later able to revive it so we have a zombie MP3 as backup.)

We also got some great supplies for the postcard project – rubber stamps, postcards and stickers. We will continue to post the items we need the most for the project. We have a huge selection of general postcards and stickers which readers have donated. So much in fact, that I don’t think we’ll need more general stuff for months and months so please hold off sending any more. What we’re really lacking are anime girls, yuri and yaoi stuff and specific nature cards.

Beth spends a lot of time searching online for the anime supplies and has come up with some creative ways to source them. Let me share one with you… remember David the guy from Japan with all the cats? He sells shitajiki boards (laminated boards of anime pictures). When he found out about the postcard project he said he often gets postcards and will send them to Beth with any orders she makes. So Beth buys boards she wants (either for herself or for gifts) and as a bonus she gets postcards. David gets the cash so he and his cats benefit.

But with my reduced salary due to being on sick leave that’s put a real crunch in Beth’s buying. She’s been so conscientious about purchases to help me. Now being so careful is a wonderful gift to me but it also puts a lot of stress on Beth as it restricts her freedom and choices which in turn makes her feel like she has even less control over life.

Beth, being resourceful, found out that David also takes Amazon gift certificates as payment. We received a couple of certificates from readers and they went towards her purchases with David. We should be receiving our next shipment in a couple of weeks and hopefully there will be some great cards we can send to people. So if you ever want to send Amazon gift certificates in small denominations they will always be put to good use. It’s the gift the keeps on giving – it helps me, Beth, David, his cats, and postcard and gift recipients.

One last thing, I was listening to the radio the other day while running errands and heard a song called ‘I will take care of you’ by Amy Sky.

Amy writes in a commentary that music has tiny fingers, and can reach places in the heart that words alone cannot. What a great and accurate metaphor. Her song made me think of Beth and made my heart ache with grief, bringing tears to my eyes. Even now my eyes water each time I hear the chorus.

Amy mentions that a lot of people cry when she sings it and she was surprised to hear that people are grateful for the chance to revisit their own losses. “Far from making sorrow worse, every time you shed tears you actually accept your grief a little more. Our wounds need the dignity of our attention, in order to heal.” I thought this was insightful as I sometimes feel embarrassed by tears I let escape. Maybe I can take it easier on myself and let them fall freely every once in a while.

Beth, this one’s for you…

Chorus lyrics:
I will take care of you
the very best that I can
With all of the love here in my heart
and all of the strength in my hands
Your every joy I'll share
for every tear I'll be there
my whole life through
I will take care of you

Great news… a breath of fresh air!

2008-12-19T04:04:00.000-08:00

After much badgering, Pacific Blue Cross has finally approved the portable oxygen concentrator. And even better news is that they are covering more of the cost on the Inogen One Portable Oxygen Concentrator than they were going to for the original concentrator we wanted.

After hearing the news, my next thought was, how soon can we get it? The local oxygen supplier was very short-staffed as snow prevented people getting to work today, but I talked to one of the technicians who was very helpful. He called back a couple hours later to say he’d tracked down the estimate and the approval fax from Blue Cross and had contacted the manufacturer and placed the order. They will be shipping it tomorrow and they estimate it should arrive in 3-4 business days. With a little luck we will have the concentrator before Christmas and our mini shopping trip to Seattle on the 28th.

It also means the bill will be submitted to Blue Cross before the end of December which was very important. January is the start of the new benefits year and each year I have to spend over $1,000 before the coverage changes from 80% to 100% of the eligible amount. And as we’ve spent well over $1,000 (try over $30,000) this year, that means we’re saving approximately 20% by submitting this month.

The difference between the cost of the concentrator and the amount Blue Cross is picking up has been collected through all your donations. So I owe all of you who donated a huge Thank You. We couldn’t have done it without you.

Update on the wishlist

2008-12-17T03:06:00.000-08:00

A big thank you to those of you who have let us know you’ve purchased things off the amazon wishlist. I’m really looking forward to receiving the items. I can assure you they will all be put to good use.

Someone mentioned that you can add products from non-Amazon sellers to the Amazon wishlist. And as Beth has had emails from people saying they want to help with the Postcard Project but don’t know what types of cards or stickers to send, Beth spent several hours surfing through Amazon and other sites to find postcards and stickers for the Postcard Project to add to the Amazon wishlist. Beth also included items from Amazon.co.uk (UK) and Amazon.de (Germany). The German site has these fantastic Australian postcards she’s just about run out of – but for other countries as well.
You don’t have to live in Europe to purchase off these sites either. So for anyone who wants to contribute to the postcard project here’s another way to do so.

My challenge was to figure out how to add the wishlist to my sidebar - which I was able to do with only minor frustration.

I’m learning not to panic when Beth puts out blogs asking people to spread the word about the Postcard Project. I have visions of hundreds of people asking for cards and me trying to figure out how we’re going to afford them all. But I’ve come to realize that, to use a religious phrase, the lord will provide. And most times that provision comes via recipients of the postcards. I am amazed by the box of miscellaneous postcards someone sent, a big envelope of various stickers sent by another recipient and the constant flow of smaller amounts of envelopes, stickers and postage stamps coming from so many. Even some of the people Beth buys anime products from are eager to help when Beth tells them about the project. They’ll throw in a few extra stickers or a couple postcards and even some binsen Beth likes giving to people.

So yeah, I need to chill. With everyone’s help we’ve had to spend less on the project. And when I put stickers on cards I often remember who contributed them and think about what they might be doing right then or wonder if they would be surprised to know which country their stickers or postcards were going to. It makes me feel connected and a part of something big. Thanks for being part of it.

Hope, Fears and Sheer Determination

2008-12-12T11:03:00.000-08:00

Hi everyone. Cheryl here actually speaking up… Beth gives me a hard time regularly because I don’t talk. I think it comes from lots of time in solitude as a ranger.

Over the last several weeks I was at Beth and Linda’s place for more than my usual weekend treks. With Linda’s current medical and work-life issues she was becoming rapidly overwhelmed. Beth was, of course, making every effort to help Linda at the cost of her own health. So, I came over to help shoulder the load and get them both to a more stable place. Spending lots more time with Beth and Linda is great because they are both lovely, caring, generous people.

There’s only one thing… being there for extended periods forces one to accept some hard realities. Beth is getting rapidly weaker over all and no longer has any reserves. Yes, there are days where she is strong and it is easy to fall into the trap of hope. Hope whispers in your mind, “Gee, Beth is doing great today. Maybe we will hit a remission so we can get her reserves built back up.” Then the next day Beth is paying for the strong day with extreme pain, fever, seizures, weakness, passing out and stopping breathing. (Laura –thank you so much for the ambubag!)

That is when it becomes impossible to ignore the truth. Beth is dying and sooner than any of us are prepared for. No, I don’t have a prognosis for how long it will be. I just know I can’t deny that death will come. That brings us to the fear. In a very short time Beth has become family in every unconditionally loving sense of the word. She is a large and important part of my life. I am afraid of losing her. I am afraid I won’t be strong enough to (1) say good-bye to Beth and (2) be there for Linda through it all. I am scared and feeling helpless. Feeling helpless also scares me. I have strong medical skills, I am capable in an emergency but this isn’t anything I can fix.

So I am holding on to a few hopes like they are a security blanket. I am well aware of what a formidable will Beth has. Now that she has said she wants to be here in May I am hoping her strong will and sheer determination will carry her through to that point in time. If there is anyone who can put off death through determination and will power it is definitely Beth. I tease her that the salmon must be her spirit animal since it is supposed to represent determination.

I am also hoping that the doctors in Seattle give us some help. Any improvement in quality of life would be a blessing. The possibility of slowing this disease would be a gift beyond price. Of course, we have to get to Seattle with the least amount of stress for Linda and Beth. That means fundraisers.

You are all probably aware of the rubber wristbands used to raise money and awareness for various causes. We have wristbands for Beth. They are colored to look like a cloud streaked sky and they say, “Gotta Fly”.
Now you can help raise money and show your support for Beth. Get your wristband(s) today. We are asking for a $2 donation for a bracelet. Feel free to give more. If you want more than one bracelet let us know with a message through paypal. If you are not receiving mail through the postcard project you will need to supply an address.

Thank you all for caring and helping!

Pedicures, rubber stamps and wishlists

2008-12-10T01:38:00.000-08:00

I had my first pedicure today. Someone had given me a gift certificate to a spa at one of fancy hotels and it was set to expire at the end of the week. I’m glad I remembered to use it in time. I used the pedicure as my reward for getting some ugly paperwork done. Still lots more to go, but at least I’m making progress.

I had heard pedicures were very indulgent and I thought they might be overrated until I had the paraffin wax applied. Very nice. I walked out feeling that my feet didn’t below to me. Feeling more normal now.

Shortly after I came home Beth and I spent some time looking for more rubber stamps. We have about six of our own and another 20-30 Cheryl lent us. But we’ve used them so many times we were wanting a few new ones. We use rubbers stamps but the companies that are the best are Stamp Oasis, Stamp Francisco, Hanko, and Komodo brands. They are the best becuase they are well made with deep grooves for clarity. A well made stamp is a stamp we can use many times before it goes mushy, plus it has vivid detail. Stamp Oasis has the best. Here's a Stamp Oasis stamp we bought today. It's just like the torii we saw on Miyajima Island.
Some sites we want to explore more later are: Stampin Treasures , KraftyatKrafts.com and Addicted to Rubber Stamps. If you want to contribute to the Postcard Project, but want to send something other than postcards you can take a look at our favourite brands on these sites, purchase one and send it to our US address:
Elizabeth McClung
P.O. Box 2560
Port Angeles, WA
98362

I am always amazed at the generosity and thoughtfulness of Beth’s readers. Each week there is usually at least one gift in Cheryl’s bag of goodies she brings over from our US post office box. We really appreciate that people have taken the time and thought about what Beth might like – whether it be kitty-related, things with wings, postcards and stickers and so many other items.

For those of you who have asked how they can help and want to give something but don’t know what, I have some gift certificate ideas for you…

1. We’ve created an Amazon wishlist. At the moment there are mostly practical items as I started the list and I’m a practical sort of person. There are also entertainment items (books, MP3 player, headphones, etc.) which are good for the soul. As time goes by, we will keep adding to the list and probably create one on our amazom.co.uk account, too. We’ve added comments beside each item which will tell you who they are for.

2. Food - For those of you concerned about us not getting enough food to eat, rather than sending us perishable goods in the mail how about gift cards? The two grocery stores I use the most in Victoria are Safeway and Thrifty’s. I contacted Thrifty’s and to order a gift card you need to call (250) 544-1234 or (800) 667-8280 and purchase the card over the phone. They will give you a fax number for you to fax over some ID confirming you are the credit card holder. The grocery card is called a Smile Card and can be in any denomination you choose. They will ask which Thrifty’s to send the card to – I shop at the Fairfield Plaza Thrifty’s and the store will call me to let me know there is a card waiting for me. If you want to purchase a Thrify’s gift card, contact me and I’ll give you our phone number.

3. Clothing – When we go to Seattle we’re going to stop at Victoria’s Secret and buy Beth some more underwear and maybe some new PINK label clothing. We’ll also go to HotTopic and Tall Girl in the Westlake Centre. Hot Topic is where Beth gets all her cool shirts and corsets. With the exception of the green corset pictured in her blog the other day, she hasn’t bought shirts since last winter. At Tall Girl we hope to get Beth some new jeans. I bought her 2 pair when we first got back from Japan and that’s all she’s got for bottoms (not including 1 pair of sweats). And they’re loose now. There’s also a Tall Girl in Victoria and we’ll be checking it out. Going by past history, the US and Canadian stores have the same price on the tags – so buying in Canada means we save 20-30% so I think we’ll try there first.

That’s me done for tonight. I promise my next blog will be about non-financial things. I’ve been wanting to write a blog sharing some things from my perspective – maybe that will be the next one.

Update on Zed

2008-12-08T23:45:00.000-08:00

Thanks everyone for your interest in Beth's novel, Zed.

We have sold all the copies I have here at home, but fear not, the publisher has more that we can purchase at a discount. So, if you would like to buy a copy and haven't yet done so, please let me know as soon as possible. I'm going to place the order in the next couple of days and would like a better idea of how many to get. Even if you can't pay for it right away, please let me know so that I can reserve a copy for you.

I'll be sending emails to everyone who has already bought one to find out whether you need the book before Christmas. In our experience selling online over the years, we've found that more packages go missing in December than any other month. And we really don't want Zed to go missing so if you are not in a rush we will post in early January.

Cheers!

Linda

Autographed Copies of Zed

2008-12-02T18:45:00.000-08:00

Here we go - our first fund-raising activity...

Beth has 12 copies of her novel, Zed, which she is willing to part with. And, she's also happy to put in an inscription as long as it's not pages long! She has to save her writing hand for her postcards after all!

And, contrary to what Beth mentioned in one of her previous blogs, we will not be offering deluxe inscriptions written in blood. No blood of any kind - you hear that Beth! Just step away from the knives...

Reviews of the novel are at the bottom of this blog entry.

If you were wanting a copy of your very own or to give a Christmas present for someone who doesn't mind having nightmares, here's how you can get it...

Make a donation using the Paypal button on this page. In the notes section, let us know it's for Zed and what inscription you'd like.

We're selling the books for $15US plus shipping.

Shipping rates are as follows:

US - $2.50 1st Class
Canada - $3.75 Air or $9.95 Priority Mail
Europe & Australia - $8.65 Air or $11.95 Priority Mail

For those of you who haven't heard about Zed, here's the blurb of the novel for you...

Zed is having a bad day. She's 12 and there's someone around who's killing kids, which she doesn't have time for. Already today, she's knifed a rapist, traded with half the drunks and addicts in town, talked to the dead, bargained with a sociopath, and extracted crucial information from a mental patient, and she hasn't even left the building. Welcome to The Tower, an urban development project no city wants to lay claim to; a place to steer clear of if at all possible, but if you can't, you'll fit right in. This vivid, claustrophobic novel is about madness, survival, and crumbling institutions, in the spirit of J.G. Ballard's High Rise or Iain Banks' The Wasp Factory.

Also some reviews...

Zed is a tale to be pondered by all those who wield power over the vulnerable. McClung's plot twists and images wrestle the emotions before the intellect can pin them down, but when her message at last emerges from the blood and bedlam the effect is devasting: Terror begins at home. Then it grows.—The Globe and Mail (Globe & Mail )

One of the best books of 2006: a piercent lament for all kids who are ill-used by their keepers. One of the top 100 books of 2006.—The Globe and Mail (Globe and Mail )

The combination of near future dystopia and murder mystery means that one is drawn relentlessly along toward a conclusion which, even if it doesn't seem completely justified, is fitting for such a vivid and explosive book.—Monday Magazine (Monday Magazine )

A humorous, but disturbing read.—The Vancouver Sun (The Vancouver Sun )

A masterfully written first novel.... Zed, both the book and protagonist, is truly original ... the definition of provocative, if you can handle it.—Zoe Whittall, NOW Magazine (Zoe Whittall Now Magazine )

A hellishly engaging novel ... Zed not only merits cinematic interpretation, it demands it.—Rain Taxi (Rod Smith Rain Taxi review of )

Her debut novel Zed doesn’t seem to be classified as a "horror" but holy crow, this book sufficiently filled my horrific quota. A NOW review tweaked my interest on this one and I wasn’t disappointed. Despite being written from the point of view of a 12 year old girl, Zed, this book is most definitely not for kids. Heck, this book is not for most adults. Murder, rape, addiction, sociopaths ... all that and more, navigated by young Zed within the confines of an inner city project. Zed is appalling yet believable. I can't wait for Ms. McClung's next book! —CBC Radio (CBC Radio )

McClung's dark, wicked sense of humor shows through as she chronicles Zed's profoundly disturbing exploits. Shocking and complete with alarming psychological insights, Zedis like nothing you've read before. —Pages magazine (Pages magazine )

Zed is the kind of work about which the adjective 'disturbing' usually applies. That's really an understatement.... It is a riveting, sometimes scary work.... Zed is laced with the kind of wit that could take the rust off your handlebars. —University of Toronto Quarterly (University of Toronto Quarterly )

Checking in...

2008-11-23T23:50:00.000-08:00

Hmmm, where to start?

It has been a long and difficult month since I last wrote. I am exhausted emotionally, mentally and physically. Here’s a big thank you to those of you who have expressed your concern and for your offers of help.

I am taking some leave from work and want to focus on taking better care of myself – resting, getting a stable eating and sleeping routine and learning how to cope with life’s stressors.

On the medical front for Beth, one of my priorities for the next few weeks is to get an appointment for Beth in Seattle. I’ve got to put together a copy of all the medical test results I’ve collected over the past two years from various GPs and specialists and send them to the Centre (her GP may have missed a few). We also need to get another series of blood tests and Beth needs to get an EEG on Tuesday. We are trying to collect a little more recent data for the Centre which hopefully will indicate trends in her anaemia and endocrine system.

I received an electronic circular from the Inogen oxygen concentrator manufacturer offering a 30-day free trial for the concentrator. I need to order it before the end of November, which would make going to Seattle in December a feasible option. Hopefully, before the 30 days are up we can find out whether Pacific Blue Cross will let us order from the US manufacturer.

My second medical priority for Beth is to search out a new GP – one who is willing to try treating some of Beth’s conditions. I am hoping our visit to Seattle will result in a treatment plan which will make a GP’s job easier.

At some point Cheryl and I will be posting fundraiser opportunities on this blog. We may even be able to satisfy some Christmas present obligations for you. Please stay tuned.

Sorry, not a very exciting read today. My brain is fried and the words are not eloquent, but it was important to me to give you all an update.

A Day of Thanksgiving

2008-10-14T20:35:00.000-07:00

Yesterday was Thanksgiving Day in Canada. Back home with my family that means a big family reunion with lots of food. There are about 50 of us on my mom’s side of the family – grandparents, aunts, uncles, cousins and spouses.

Beth and I don’t do too much on our own. We had a nice meal and I had pumpkin pie. Beth can’t stand the stuff. I don’t eat any vegetables from the squash family as a rule – but pumpkin pie is the exception – all those spices I taste – cinnamon, nutmeg… Yum. I know, most of the British readers are in agreement with Beth. When we were in Wales, I had the hardest time trying to convince people to try it.

In honour of the day, I wanted to take some time to say how much all of you mean to me.

Financially speaking, it has been a struggle for me to keep on top of things, and as Beth has mentioned in previous blogs, I can get anxious about it. When I set up the paypal account on several readers’ request, I did not imagine the response I would receive. Your donations help me not fear all the time how I’m going to pay for big ticket medical items.

Physically and emotionally, I don’t know what I’d do without Cheryl. It is hard to believe we only got to know her earlier this year. It seems like she’s been part of the family for a lot longer. She helps decipher medical related stuff and provide emotional support to both me and Beth. She’s taken her commitment to family very seriously – and she’s more family than any of the family Beth and I both have. She’s also a lot of fun and I enjoy spending time with her whenever we can. She’s also staying over while I’m out of town Thursday and Friday so that Beth is not alone. (Hint: These would be great days to drop Beth a personal email so she doesn’t feel isolated.)

And then there’s Lene who calls Beth every week to chat. They cover a lot of ground in their long phone calls and solve all the injustices of the world. I know when Beth is talking to either Lene or Cheryl to apply the oxygen because the more she talks the more her oxygen saturation levels drop.

And there’s Laura who writes us every day and does searching online for us. And I can’t forget the T-shirts. She also bought us an ambu-bag in case Beth stops breathing and I’ve had to use it a couple of times.

And then there are all of you who read Screw Bronze. Some of you lurk (technically I do too as I don’t say much on her blog) but she knows you’re there because she checks the number of hits most days. She also gets concerned when the numbers go down.

Then there are those of you who comment infrequently and a dedicated 10-20 who comment religiously. For all of you, you are what keeps Beth writing day after day. You support her when she’s down, you respect her thoughts on dying, and you get angry for the injustices that are done to her. And woe-betide the anonymous commentor who hurt Beth and/or the disabled community at large. You’re there to put him in line – but no vicious attacks please.

The other thing that keeps Beth going is her postcard project and the gift packages she sends out. She wants to make a difference in people’s lives – and I know she does as many have told her so. But if you’re one of those people who have received a card and haven’t responded, I urge you to do so. Send her an email, or better yet, return the favour and send a postcard back. Every weekend she looks forward to Cheryl’s arrival as Cheryl brings mail.

I must mention Wendryn here, who is absolutely amazing, as she has been sending a postcard every day to Beth for months. The other day Beth said she didn’t know what she’d do if there wasn’t a pile of postcards for her each week. It’s not an unreasonable fear as the amount of cards she receives each week has dwindled – last week there was Wendryn’s and one other person. It made her very sad.

I also wanted to thank all of you who have sent packages to Beth. She doesn’t send packages expecting anything in return, but boy does it make her happy when she receives one. I want to recognize SharonMV for her steady supply of beautiful stickers (which always garner favourable comments) and Robin for sending a box of Hello Kitty stuff including a Hello Kitty sticker book with hundreds of stickers. It was the mother load of stickers and that book goes with Beth wherever she happens to be writing postcards. Many of you have sent stuff for her to enjoy or for her to regift. One of the most surprising things was the box of Hello Kitty goth tape which was sent to us by Victor & Collette. Beth was speechless as she couldn’t find them anywhere on-line – and she’s a genius when it comes to on-line searches.

I take a lot of pleasure watching Beth open her gifts and read her postcards, it gives her so much joy and a happy Beth is a beautiful sight to see. She’s a little lacking in happiness these days. So thanks for sending what you have and if you are able to continue sending little surprises once in a while I’d be very grateful.

Finally, I just wanted to say that each of you are a gift to us. Thanks for being yourself.

Happy (belated) Thanksgiving!

What's Taking So Long?

2008-10-14T00:12:00.000-07:00

Cheryl here…

I thought it would be helpful to share my perspective on where we are in terms of getting Beth to Seattle and getting some of the large medical aids like the portable oxygen concentrator. Mostly we are waiting for the wheels of bureaucracy to slowly turn, very slowly turn...

We would really like to have the portable concentrator for when we go to Seattle since Beth’s oxygen use has increased a lot and carrying enough full air tanks isn’t really feasible. Linda and Beth are waiting for Blue Cross to give the go ahead for the Inogen One unit and to find out what percentage Blue Cross will cover.

As Beth pointed out the other day, we aren’t going to Seattle to get a diagnosis. She already has multiple diagnosis (orthostatic hypotension, Raynaud’s Disease, dying thyroid, anemia, unknown auto immune disease etc.). We are going seeking a comprehensive diagnosis and more importantly a treatment plan. I personally would rejoice to have some of the conditions addressed to improve Beth’s quality of life such as the extreme pain.

In preparation for the trip to see the doctor’s at the Booth-Gardner Center, Linda is getting copies of the many tests that Beth has had. That is also taking some time since it involves dealing with multiple specialist’s offices and the hospital. We are also waiting for HEALTH INSURANCE BC (HIBC) to rule on the referral request to go to Seattle. There is a precedent for the referral to be approved. It seems that British Columbia has a shortage of neurologists so the waiting lists to see specialists are really long and it can be many months to be seen. (Does any of this sound familiar?) For that reason HIBC has approved referrals to neurologists in Seattle for patients who have rapidly changing conditions. We are hoping that they agree that Beth fits that description. If we get approval then the out of pocket expenses for Beth and Linda will be less.

If the referral is denied we will still be going to Seattle, it will just require more money.

Once again, thank you all for your generosity and support. Beth and Linda couldn’t do this without you.

A Call from Seattle

2008-10-13T12:59:00.000-07:00

We got a call this morning from the Booth Gardner Parkinson Center in the Seattle area. They are the folks we are asking to see for a comprehensive diagnosis and treatment plan for Beth. It’s the treatment plan we’re really after because even though we have all kinds of diagnoses from various specialists no one is willing to prescribe treatment. For example, it has been confirmed that Beth has peripheral neuropathy, anaemia, seizures and some sort of autoimmune disease.

So the phone call this morning was to open a patient file for Beth. They had received the test results from the GP (with the exception of the MRI’s) and the next step was to have the specialist review the tests and let us know whether any other tests needed to be done before we went down for the consult. My next step is to get a copy of the first MRI we did last year. I have the one from this year on a disc. Just means another letter and some more waiting.

Waiting seems to be something I’ve become accustomed to. Thirty days for accessing medical records, 6-8 weeks for Blue Cross pre-approval, 2-12 months for a specialist referral.

Speaking of waiting, I wanted to give an update on the portable oxygen concentrator (POC). I need to get a quote from a local supplier for the Inogen POC and then can resubmit for pre-approval from Pacific Blue Cross. I have two quotes from the US, one from the manufacturer and one from Oxygentogo, the company we rented from in April. They are giving us a great deal (about $700 cheaper than the manufacturer) and are throwing in filters and such for free. Trouble is, with the way the Canadian dollar is dropping the total cost is creeping upwards every day. Right now it is still a good $500 cheaper than a Canadian supplier, but by the time the approval comes through, who knows.

One of our dilemmas is do we wait for a concentrator before we go to Seattle. We’d be away for 3-4 days with a lot of activity happening during those days. How many canisters of oxygen would we have to bring? And what if we run out? When we visit Cheryl, we have a lot of chilling out time, which reduces the need for oxygen. In Seattle there’s the day at the specialists and then we’d want to spend a day shopping (Beth’s clothes keep getting looser as she shrinks). Then a day travel time each way. That’s a lot of activity.

I’ll keep you posted as things progress.

Getting our hopes up – portable oxygen concentrators

2008-09-30T20:53:00.000-07:00

A couple months ago I did some research on portable oxygen concentrators. We really liked the Inogen One concentrator we used while we were in Japan so I called all the dealers in town to see who carried it and how much it would cost. All three dealers mentioned to me that the Inogen One is an inferior concentrator compared to the EverGo by Respironics. The EverGo has longer battery life and more oxygen per puff. It also stores more oxygen inside than the Inogen One. The EverGo sounded very good so I got a quote and submitted it to Pacific Blue Cross for pre-approval. They eventually, like 2 months later, approved the machine saying they’ll pay the first $4,200 and we pay the rest.

Ugh! The rest turned out to be $1,500 based on one supplier’s quote. Okay, don’t panic, I told myself. I just need to shop around. So I did, and found another local supplier that sold it for $700 less. Now that’s more reasonable, I thought.

Beth and I took a quick trip to the supplier at lunchtime today as I wanted to check the machine out, particularly the noise level, and the Oxygen Therapist wanted to see if the machine was suitable for Beth (if it could maintain her oxygen levels). Well, the OT turned on the machine and my first thought was ‘oh, oh… this machine isn’t much quieter than the honking big one we have at home.’ It was much louder than the Inogen One. The Inogen One, we used everywhere, and all I remember hearing was the puff when she breathed. I don’t remember a fan. If we had the EverGo I’d feel very conscious of the noise we were creating.

Beth also thought the noise was too much. There’s no way we could carry on a conversation with the concentrator going (it was annoying to me for the short time we had it on, imagine how much worse it was for Beth who has super-sensitive hearing). And there’s no way Beth would use it beside her for hours on end.

So, we’re back to square one with the concentrators. We want to go back to the original plan and get the Inogen One. We know it’s quiet. It also has a big handle like a curling rock and can be taken out of its carrying case. The EverGo needs to stay in its case so has all kinds of zippers and closures – which Beth pointed out would be hard for her to manipulate.

I’ve got to put a call in to Pacific Blue Cross to see whether I need to resubmit a quote and go through the approval process all over again. And then I’ve got to shop around for the best price. I want to use your donations as wisely as possible.

Donation Update

2008-09-30T20:47:00.000-07:00

Hi folks,

I just wanted to express my appreciation again to those of you who have donated towards Beth’s medical expenses. I feel a burden lifted off my shoulders – thanks for taking some of it upon yourselves.

I am ecstatic to report that we’ve received enough donations to go to Seattle and almost enough for the portable oxygen concentrator (see today’s other blog for more info on concentrators). I was astounded to receive one donation for multiple hundreds of dollars which said ‘Get thee to Seattle, Beth.’ ‘Holy crap’ I kept saying to myself over and over again, and to Cheryl, too. It is a wonderful feeling to know that despite all the bad things going on in our lives, specifically with the medicos, that there are many people who want to help and give as they are able.

We’re waiting on some paperwork from Health Insurance BC and also some medical records and then we’ll be booking our appointment in Seattle. It’s something I’m excited about, but also anxious too. Will they be just another specialist who says it’s not their inch or don’t know what exactly it is? Will they want to do a bunch of tests – and who’s going to pay for that? What if they know exactly what it is, and they confirm that it is terminal? There are days I delude myself that Beth is going to be around a long time and that she’s not going to die. How am I going to cope with a reality that she won’t be by my side for decades? And if she is terminal, how long do they give her? And how am I going to support Beth through all of this? So many questions and fears…

Cheryl is going to come with which is great. She’s been a real support for both Beth and I. And I know Beth’s readers will also be there in spirit. And rest assured, you’ll all be hearing about it on our blogs.

The Memory Challenge

2008-09-26T20:13:00.000-07:00

Hi, Cheryl here…

I want to start by saying a huge thank you to everyone for all your support. This blogosphere family is made up of incredibly special people. Every week I bring the mail to Beth and watch the joy she gets from each postcard or letter she receives in response to those she’s sent. She delights in the emails she receives. In Beth’s world now she has limited connections with others so each time one of you makes the effort to connect via blog comments, emails, postcards, letters, or gifts it means a great deal.

With Beth’s changing memory Linda and I had discussed a potential new challenge for all of you. We want to make some memory books to help Beth when she is having trouble remembering.

What we would like from you is a picture of yourself, the moniker Beth knows you by (for example: Yanub) and a little bit about yourself. Feel free to add any messages to Beth you want to share. You can decorate/embellish the page and email them to Linda at Linda.McClung at shaw.ca or mail it to the Port Angeles, WA post office box. Email Linda if you need the address.

So have fun with it. Play dress up, unleash your inner or outer artist/writer, and create. Given the fun weekend challenge response I think you will all do great with this challenge as well.

Wheels, Wings and My Thanks

2008-09-24T20:57:00.000-07:00

First off, I wanted to say thanks to everyone who has visited this blog – whether just to take a ‘look see’ or to make a donation. Thanks for caring about me and Beth. Already I feel less alone and the burden lighter.

*

Good news arrived in the mail – Beth’s new power wheelchair has been pre-approved by Pacific Blue Cross. What’s even better news is that Blue Cross says the full amount is eligible ($17,000+). We also have Triumph willing to kick in up to $4,000 for the tilt portion of the chair so we’re more than covered. Whew! Our physiotherapist at Queen Alexandra said she’d put in the claim and I didn’t think she’d have much success because Blue Cross generally only pays for a wheelchair once every 5 years. We bought the manual less than 2 years ago. But Janet, the PT, is very good at what she does. She said because of Beth’s deteriorating condition that Blue Cross would approve it. And she was right! So now we have to have another meeting to reconfirm the wheelchair components and then get it ordered.

And then I have a few weeks to make some space in the study so Beth can maneuver around better with the chair when it arrives. There’s always more to do, sigh… but it’s worth it. When Beth has an aura before her seizure she can tilt the chair back and between the tilt and the wide seat belt she will be safe and secure in the chair during seizures. The chair will also have interchangeable head rests – a small one for going outdoors and a larger one for indoors which cradles her head on the side. The larger one, because of its width, isn’t suitable outdoors as it blocks too much in her field of vision. At some point, I’ll also look into getting a portable ramp so that the chair can go into the van. There’s no chance I’ll be able to lift it! That’s one of the great things about the manual chair is its light weight makes it easy to put in the van without disassembling it.

*

In Beth’s blog yesterday, she showed pictures of the shirts Laura made for Beth’s pit crew (me and Cheryl) to wear to the races. Several have asked how to purchase the item and Laura has responded. She’s set up a website, Of Wheels and Wings, where you can email her if you are interested in purchasing a shirt. She needs a minimum order of 20 shirts in order to make it cost effective. These shirts garnered some attention at the race – I know Cheryl had a few people ask about hers. And, being yellow, it was easy for me to spot Cheryl a kilometre away. Laura tells me it’s possible to change the colour to something less bright, but I think you’ll need to give her your suggestions for the colour. Thanks Laura for your creative gift.

Why a Girl's Gotta Fly?

2008-09-23T18:45:00.000-07:00

My partner Elizabeth McClung at Screw Bronze has been battling Multiple System Atrophy (unofficial diagnosis) since December 2006. She has been writing about her experiences, frustrations and joys and many of her readers have been supporting her emotionally for which I am very grateful. She has been asked several times whether the readers can help in other ways.

This blog is in response to 'how can we help?'

As ideas arise (and feel free to send me yours!) I'll post them here. I'll also give you updates on how things are going whether it be Beth's health, the medical bureaucracy or just coping day to day.

Financially speaking, we have a two large medical expenses coming up - a portable oxygen concentrator and a trip to Seattle for a consult.

Since April 2007 Beth has been using oxygen in canisters. When she started, her oxygen saturation levels were above the threshold to get free oxygen, so we've been paying for oxygen canisters and the rental of the regulator which fits on the canisters. At first she only needed oxygen an hour or two a week, but as time has passed the need has increased to 3-6 hours a day. Even with Pacific Blue Cross paying the majority of the cost, it adds up. We got a break this spring when someone from the Canadian Red Cross came by to deliver some loaner equipment. Beth got to talking with him and he said it looked like she needed an oxygen concentrator and he'll bring one over. The CRC doesn't loan concentrators - he just wanted to give it away. It's a huge, loud, heat generating beast, about 20 years old, but has been a real life saver for Beth and a cost saver for me. We keep it in the living room and have a 50 foot hose that reaches the study and the bedroom so she can wear it wherever she goes indoors.

We still need the canisters though - as late at night I'm afraid the concentrator will wake the neighbours. We use a large canister for nights. And we need the wine bottle size canisters for when Beth goes outdoors. She can carry one canister in the pouch under her chair and it will give her about 40 minutes of oxygen. Needless to say, she can't go far or be out long unless she has multiple canisters. This means our weekend trips to visit our adopted sister Cheryl involve me carrying one large and 3 small canisters in my hiking pack.

When planning for our Japan trip this spring, getting oxygen was one of my greatest challenges. We ended up renting a portable oxygen concentrator and it was WONDERFUL. It was small enough to fit in the backpack on Beth's wheelchair, was quiet, and with 2 batteries lasted about 6 hours. We'd recharge it each night and we were always with oxygen no matter where we went.

We want to buy a portable oxygen concentrator and use it all the time - indoors and out. We've got pre-approval from Pacific Blue Cross to pay about 75% of the cost. We just need to come up with the rest. The unit we want is an EverGo by Phillips Respironics as it has some of the longest battery life, is one of the smallest units and can be taken on board flights - it we ever manage another vacation which involves an airline.

Our second major expense coming up is a visit to the Booth Gardner Parkinson Center in Seattle for a consult. We anticipate around $1000 for the trip, not including any medical tests. Our GP has agreed to fill out a referral to Health Insurance BC as they may fund the actual consult. Fingers crossed! The Centre specializes in Movement Disorders and Multiple System Atrophy, what we suspect Beth has, is one of the diseases they have experience with.

Several readers have asked how they could donate to these expenses so I've added a paypal link to the right. It's very easy to use - you need an email address and either a credit card or paypal account. You may also add special instructions if you want to specify what you’d like your donation used for and I’ll do my best to honour that request.

I want to say again, how much I appreciate the support you have given both of us. Thanks so much for caring – it’s so badly needed when you’ve been the human ping pong ball in the medical system.

Cheers!

Linda