Friday, December 19, 2008

Great news… a breath of fresh air!

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.

Wednesday, December 17, 2008

Update on the wishlist

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 (UK) and (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.

Friday, December 12, 2008

Hope, Fears and Sheer Determination

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!

Wednesday, December 10, 2008

Pedicures, rubber stamps and wishlists

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 , 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

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. My Wish List 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 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.

Monday, December 8, 2008

Update on Zed

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.



Tuesday, December 2, 2008

Autographed Copies of Zed

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 )

Sunday, November 23, 2008

Checking in...

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.

Tuesday, October 14, 2008

A Day of Thanksgiving

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?

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.

Monday, October 13, 2008

A Call from Seattle

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.

Tuesday, September 30, 2008

Getting our hopes up – portable oxygen concentrators

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

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.

Friday, September 26, 2008

The Memory Challenge

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 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.

Wednesday, September 24, 2008

Wheels, Wings and My Thanks

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.

Tuesday, September 23, 2008

Why a Girl's Gotta Fly?

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.