My Two Favorite Dorks

My Two Favorite Dorks

Thursday, August 28, 2014

The "Do Something New" Challenge Changes

Me with my two favorite physical therapists at rehab, Karlyn and Courtney, today; other than rehab I'm finding other interesting things to do with my days
I have decided to change the rules of the "do something I wouldn't normally do each day" challenge. (And none too soon as Todd's fantasy football draft is tonight - dodged that bullet!)

If there is one thing I've learned while trying to think up things to do for the past nine days it's that there are a lot more things that I really do want to do, but just haven't gotten around to, than things I would never do. In any case I have decided now to do something each day that I have been wanting to do but have been putting off or haven't had time to do.

I have, incidentally, decided to carry the spirit of the "do something I wouldn't normally do" challenge going forward. I've realized that adding things you wouldn't normally do into your life once in a while is a very valuable thing. So I may yet go out to see a jazz band, or try to get Todd to ride the train with me at Pullen Park, but it probably won't be before transplant.

Day 9

I love it when everything is in its proper place!
Preparing for transplant has required an enormous amount of preparation - everything from getting our wills done, paying as many bills in advance as possible, writing instructions for everything that needs to happen during my surgery and recovery to making sure my car has plenty of gas and that our pet food/treats/medicines are always stocked.

Today, I decided to tackle the stack of papers to file on my desk. This was pretty much the very last of the 'things I'd like to do to prepare for transplant if I have time' list - but I hate doing it so much that I had put it off until now.

Task: File/discard/deal with the papers on my desk.

Verdict: You will find no one who agrees more than me with the sentiment that getting things organized/put away frees up a tremendous amount of mental energy as well as physical space. It feels great to have my desk cleaned off. And I finally got around to looking at some old genealogy papers my aunt sent me a long time ago. Success!

Day 10

I don't know anyone who likes asking for money. At my old job I wrote tons of letters asking people for money (also thanking them for giving money.) It's a delicate subject that needs to be approached just the right way to be effective.

And so it was that I decided (somewhat reluctantly) to set up a fundraising page for myself. Todd and I have been incredibly fortunate thus far in that my insurance pays wonderfully for my healthcare and medications, and we have not incurred an extraordinary amount of extra costs yet.

But I know that things will start adding up...and there are liable to be unexpected things that pop-up as well. It's also going to be expensive for people to travel here to help out after surgery, and I would like to help them with that. Add to this the fact that friends and family have been asking what they can do to help both here and from afar and, well, here it is:

Task: Set up a fundraising website for myself.

Verdict: We'll see how it goes! I think it will be a success. The amount I chose to fundraise, $2,000, was kind of a guess. Best case scenario we don't need all of that money and I will donate it to The Cystic Dreams Fund. Worst case we may need to raise the bar. Bonus: who doesn't love a Snoopy-themed fundraising site??

Day 11

These two CF warrior women, Aimee and Shawna, from my rehab would not be here today without the kindness and generosity of an organ donor
Wow, things are really cooking this week here on the L Word. I have been writing a ton, which I love, but I might need to slow down a little bit.

Back to today. CF, to put it bluntly, either ends up with death or transplant. Sometimes the transplant doesn't go so well, sometimes it goes alright, and sometimes there are the stories we pre-transplant cystics dream of: effortless breathing, being able to exert ourselves without huge effort, a return to jobs or hobbies or finding new things about life to enjoy doing. But without an increase in organ donors in this country, not all of us will have the option of returning to a normal life. And so, today, I turn a new leaf:

Task: Be more of an advocate for organ donation within my communities.

Verdict: Here is the result. The truth is that I may have never taken this on had I not been in need of an organ transplant myself. But I'm going to surmise that most people will either know someone who needs a transplant or need one themselves in their lifetime. People should not go around thinking that this problem does not affect them. Maybe it will be you? It's scary to think about a shortage of organs when your own life is on the line. Check out my full post from today.

My Donate Life license plate
Go here to register to be an organ donor!

Day 12

Today was not the greatest day for me, mentally. I've been a bit down the last few days, experiencing waiting fatigue. Once one domino goes down, it's hard to stop the others. Doubt creeps in, uncertainty too. It's an intense life right now.

One of my rehab buddies who was transplanted about a month ago is not doing well - he's been in and out of ICU having complications the doctors can't figure out. I hate it for him. It makes me sad.

I also had more sad news: I texted the woman to whom I gave Oliver to see how she's been feeling - last I heard her cancer was back and the chemo was not going well. A couple of hours later, her husband called to tell me that she passed away yesterday. I had no idea things had become so serious so fast.

But despite all that, or maybe because of it, I really wanted to get out and do something today - even in the heat. We decided to go to the Museum of History to see a bluegrass exhibit and an exhibit of photographs from Historic Stagville Plantation.

Task: Visit one of Raleigh's fine museums.

Verdict: We didn't make it to the photographs (3rd floor) - we'll have to save that for another time. But it was a really nice, simple fun outing for the two of us. It was also nice that it was fairly handicapped accessible. I don't mind walking, but it's tough on a really hot day. Shocker: I went into a museum gift shop and did not buy anything!

Day 13

In the midst of my world of health things these days, some things have gotten swept to the side. One of those things is any non-urgent things having to do with the pets. This past week, we finally took Diosa to the vet - she was WAY overdue for shots and had an ear infection. I also wanted to get some baseline blood work done and make sure her kidneys were holding up alright with her current arthritis medicine (Metacam).

The vet thought that Diosa was probably having a good amount of pain from her arthritis. Cats are good at hiding it, and she herself is probably used to it to an extent. But hearing that motivated me to get on the ball to make sure she is on the proper medication. Yes, Diosa is good at looking pathetic when she wants, but she has been looking at us sadly and meowing to lift her up onto the kitchen table so she can get to her food and water

I also wanted to do one other thing to make her life a little easier.

Task: Find kitty steps for Diosa to get up onto the kitchen table.

Verdict: Success! She took to them right away. (She already has one set of kitty steps to get up onto our bed.) I don't want you to think that Diosa is a total old lady - she still does alright, she just moves a little slower than she used to. And we are more than happy to accommodate her aging kitty bones.

Day 14, 15, 16, 17...

I am unofficially putting this experiment on hiatus. I didn't think it would go on this long!! I am getting so fed up with waiting. It's not only gotten to me but the steadfast Todd as well. Still trying to do new and fun things on days we have time, so the spirit of this has been a success.

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