Friday, June 17, 2011

Relationship With My Phone

I've been so busy posting updates to the Care Pages site, I've found little time to get additional thoughts down here-- but I'm going to try.

One of the interesting things I've discovered in the last two weeks is how much I love having my phone for updating the Care Pages, checking in with family who are at the hospital or keeping them updated when I'm the one sitting bedside. It allows us to instantly gather everyone when things go south, text and not disturb Saran while she sleeps, send emails to coordinate clergy visits, food drops, car and kid hand-offs, etc., etc., etc. The phone has so many uses and is so portable, I stopped bringing my backpack with my laptop and a book to the hospital, 'cause I never took them out. But,

I HATE MY PHONE. Everytime it rings, dings, or shakes, my stomach flip-flops. I need the news like the hit of drug, but I dread what it will say. Any unknown number or unexpected text could be salvation or damnation. I can't go to the bathroom or take a shower without checking the volume and setting it on the vanity. I pat my pocket constantly to make sure my phone is still there, then I pull it out to make sure I didn't miss a text or call. It is the last thing I look at before I close my eyes to sleep and the first thing I look at when I open my eyes in the morning. When I get the 20% low battery message, I panic and playing Angry Birds or surfing the web to pass the time feels like I am misusing my battery life. I am learning the dead-zones in the hospital, and I worry when I pass through them. I can't relax when little boy Bean wants to play games on it.

I can see why Sarah began to have the same relationship issues with her phone after she got the listing letter from Mayo. I can't begin to imagine how this process worked before we were this connected. I see the sign that says 'telephones' and points down the hall, and I thank the technology gods I don't have to walk down there to try and reach the house phone at my parents.

If you'll excuse me now, I have to check Facebook, text messages, missed calls, battery life, Care Pages, my todo lists and my emails. Now if someone will just create an app for the extra have cup of coffee I really need.


Tuesday, June 14, 2011

Brother Blogger, First Edition

Hello there.  I am attempting to keep up the blog, per my sister's request.  First order of business, her Care Pages website.  (Which evidently is not CaringBridge, but similar)

I'll be updating that more frequently with information on her health and status.  Here I will try to emulate her musings about her life and journey.  As she is currently in ICU and we are taking shifts, there will be plenty of time for reflection and musings.

I will be passing along any wishes, prayers, or comments to her as they are posted.  The care page will be the best way to send your encouragement to her.

I will post again soon with more information.  Thanks and keep her in your thoughts.


Monday, June 13, 2011

Lasting Post

Depending on how my day goes this may be my last post for awhile. If I am unable to continue it I have asked my brother in my absence to continue on with it and keep you all posted. When the time is right he will also post my Carringbridge Website here.

Another bad weekend, another bad night. A morning that brings new news that my lungs are not going to hold out much longer. My body needs to start regulating oxygen as it has started to become toxic of sorts from the Carbon Dioxide it is holding onto. Every day I think I am the pits of Hell, I find the next day I have gone lower. So, we will see how much further we can take this before Hell has me broken in pieces.

I want to thank all of you for your love and support over these months, it has been a rough and very abrupt ride. I don't want you to think I am tellling you I am dying because I won't give up that easily, but I am losing my control over just about everything I can do to help myself. I need your prayers stronger and harder than ever before. I ask for the strength to push through for one more day. One day closer to new lungs.

God Bless and Love you all. Sarah

Tuesday, June 7, 2011

I am 34, today!

It is funny to look at the actual number of years that I am old. It always takes me for a second, to catch my breathe when I realize I am that old. I have a lot of memories in this head of mine of birthdays.

My youngest memory, or maybe because I have seen it in photos so many times, but I remember the pink earrings and pink bubblegum colored nail polish when I was like three. The earring were plastic clip-ons that looked like dangling gems. This was the early 80's so they had to be fashionable. I look at those photos and wish somedays I could crawl back in there, being the little girl with my two best friends, my brother and sister. We had good growing up, we had it really good.

I remember my one birthday party, I think it was my golden birhday and had like 8 girls over, never had a party since but I do remember it was a sunny and windy day and we played the drop the clothespin in the jar game.

The one thing I can't do on my birthday is NOT go the day without thinking of my grandma. Grandma's birthday was June 2, so we would kind of share our birthdays, do a weekend cake thing. I know I am always talking about Grandma on here but there is just something so connecting with her, and here again on my birthday I can't help but remember her. I can't help but recall the birthday where I asked for Strawberry shortcake, and I got it in both forms. I got the doll, that was so popular at the time in the 80s, but Gramma made me strawberry shortcake as she thought that was what I wanted and the truth was I am was totally okay with it. But I also remember the icing she use to make for my angel food cakes that were hard to the touch but soft inside. Happy birthday Grandma!

Those are a few I remember, for the most part they are usually quiet, as in no big party. I however enjoy every one with the people I love and who love me the most, and that means the most to me. There are very few people we get the pleasure of knowing our whole life, and the same people that were there the day I was born and excited for my entrance into the world are excited to celebrate another year of me.

So, on this day I am happy to have celebrated another year, however rough the next year will be I know that on this day I was loved and celebrated for being me.

Mary Moe!

Saturday, June 4, 2011


I have had many uncomfortable nights over the last few weeks but over last weekend it was so bad that I realized how close to death I really am. Reality has finally hit, this is bad, this is not the spot I want to be only two months into waiting on the transplant list. I could have months to go and yet I am nearly helpless. Mostly I am helpless unless the drugs work on this lung junk there is nothing I can do. If you have ever had someone sit on your chest or hold their hand over your mouth and you panic from not being able to breathe that is what it feels like most of the time. What's funny is that no one, even those closest to me can understand my reality, that isn't a bad thing it is just reality and I really wouldn't want anyone to know what this feels like because there are days where I would guess this is hell on earth.

My first night here I was gasping for every breath I took, I couldn't relax because it felt like I was going to forget how to breathe. For as bad as things were in January and February this by far is much worse. I lost a lot then and I have lost a lot now, physically.

Friday was a lightbulb day, it wasn't a great day but I was able to ride the bike and take a walk.. I realized today  that the only way I am going to give myself the best shot at transplant is to truly put myself first and to put aside my negative ideas about a few things. I requested help from physical therapy and I received the pulmonary rehab PT, that was great. So now I have some exercise bands to work my arms and legs, the trick is it doesn't take much but it requires doing and so I will do.

I also am convinced, even though it hurts me to say it, the stomach tube is probably the way to go. I can consume 1,500-2,000 while I sleep, without any effort on my part to think about it. I am exhausted from trying to consume calories and exercise and take care of myself that I am wore out. But it would be huge to have a large portion of my days calories taken care of at night so my day I can eat more what I want and not worry so much that I am pushing them all. My brother made a good point last night that I hadn't thought of and that was my grandfather had a feeding tube the last years of his life after having been paralized in an auto accident. I guess I was seeing the feeding tube as end of life thing because of that and should have seen it as life sustaining.

I have also learned to ask for things that I need. I learned a lot in Jan.Feb. but I have learned a great deal more. I am still extermemly miserable with my stomach and lungs throughout the day, if only the stomach didn't have to push on the lungs, it would make things easier.

I have a very, very long journey ahead I ask that you pray for my strength to get through this and continue fighting, and hope for the best - whatever that may be.

Thursday, June 2, 2011

Club Med

Just a quick update as I just realized it is now after 9 in the evening. I spent most of my day here at good old St. Mary's either sleeping or writhing in misery. The extra water weight has been frustrating and the new antibiotics cause me to be nauseus so I have not only tried to dry heave my way into the day but the only meal I got to eat didn't stay put either. It has been a long long long miserable day.

I did however perk up after my third nap and tylenol to find my parents waiting quietly as I slept. I love when I wake up to them, ever so quiet they are.

I was admitted yesterday noon, due to my lack of oxygen and the cough that has not improved. The new antibiotic is one they hope works but as infectious disease said they still have a few tricks up their sleeve. The other thing I learned today is that when you are on transplant list there are many more people (doctors) trying to make you better so, many more doctor visits. But it seems the transplant team is a whole different breed of doctors.

So, here's hoping to a few more than four hours of sleep tonight and maybe a better day tomorrow - with what I really hope is a shower. I look pretty pathetic today but the shower was the last thing I felt like doing.

More from Club Med in the days to come.