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.