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.
Sunday, November 23, 2008
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!
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.
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.
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.
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.
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 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.
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.
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