Sunday, January 25, 2009

No Perishables, Please

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.


Sunday, January 11, 2009

Courage, Fear, and Loss

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.

Thursday, January 8, 2009

Oxygen, gifts and tears

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