Friday, May 17, 2013

Hope springs

It was just two weeks ago we had the CF walk and yet it seems so much has happened in that time it feels like much longer ago.

I gave a speech at the CF walk this year, I am by no means a public speaker and have always hated talking in front of others, even in a small group. So this was a big deal for me, but pleased with myself for not weaseling my way out of it. It was also a great day because another CFer got her lungs. She waited in the hospital for six months, here she is two weeks later breathing with new healthy pink lungs, I am over the moon happy for her and her family. It will be a struggle, but the feeling of those lungs is unbelievable.

There are many CF bloggers I follow and this past week another CFer got her second transplant, what a miracle it was, so touch and go. Her progress as of today, she is out east, is better than anyone had expected. Apparently the second time around can be worse than the first. Considering my first go round, I would hate to see worse.

On to my current state of being. Come July I will have had this PICC line in my arm for a year. It started because of that infected lymph node that was finally removed in January. But continues to be in my arm because of a nasty fungus, Aspergillus, has decided it loves the nice warm moist environment of my lungs. I have gone from drug, to drug, to drug, every kind, every form, and every side effect possible.

Last week I had another biopsy this time from outside my chest in, as there was a white spot found on my CT scan, this one-inch roundish spot ended up not to be cancer but rather a large mass of fungus. Seriously getting a bit ridiculous. So now for three plus hours of my evening I am attached to either a medicine ball or a metal pole.

This past Monday I found a lump on my belly, willing it with all my heart to go away, it did not. Monday I have an ultrasound and needle aspiration, as they called it. It better be that I have a weird fat deposit because I am getting pretty tired of dealing with these things. I just can't seem to catch a break.

Every day I watch the birds out my patio door on the deck and they make me smile. Today four orioles came to eat on the oranges I put out. It was amazing. I can find joy in each day, I don't have a problem with that. Nobody ever guaranteed an easy path in life and I realize we are here for some reason.

There are days my life totally sucks. It's true. I don't have the job I use to, with the people I loved working with because I had to have a lung transplant. I can't do all the things around my house I used to because it isn't good for my lungs, and or don't have the energy. Some days I can hardly get off the couch and other days so great I do a lot and pay for it the next day. I can't make plans because I never know how I am going to feel until I wake up that day.

It has literally been one thing after another since June of 2011. I keep waiting for a break but guess that break will only come when I am dead. Not that I see that as a bad thing. I just wish sometimes I could do more while I am here. As always, the same complaints day in and day out.

Hope is all I have and I hang on to it every single day.

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