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May 09-15

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Hello Family and Friends, 

Fall is my favorite season. The cooler temperatures, the changing leaves, my birthday, my re-birthday, all the delicious carb filled foods; there are are many reasons why I love it. Ear infections and sinus infections do not make the list and so far, Fall 2019 has been full of those two irritating things. Just when I shake one, another hits me. Due to the summer of pneumonia and gVHD (graft versus host disease) I was put back on immune suppression. Therefore, my immune system is now even more fragile. Yay.

When I get sick, it takes me months to get over it and has the potential for creating gVHD flares. It's devastating to me physically and emotionally. Getting sick sucks for everyone. With a compromised and suppressed immune system it's potentially deadly. Most everyone has been really understanding about this and yet it still makes me feel bad. Relationships require effort and require you to show up. Two things that I can't do consistently because on any given day it may take all my energy just to wake up see my kid off to school and shower. Then I might be done for the day. I might only be able to do one of those things. Guess what I pick? It's not shower. Sorrynotsorry. When I'm not sick, I have been experiencing a trend of more good days than bad, which is great. The fatigue is real and doesn't waver but I'm definitely better than I was a year ago. Progress is progress, right? 
I am finally getting to a place in my recovery where I can do more but setbacks are inevitable. They are part of this new life I've been given and will forever be a part of it. I will never have a typically functioning immune system. Things should get better for me over time but I will always have to be more vigilant regarding disease precautions than a person with a non-compromised immune system. It's important for me to tell you that so you can understand why I might not go to an event or have to cancel at the last minute or just tell you I've run out of energy and I can't go. Or why I ask you each time we get together, if you or anyone in your family are sick. I'm frustrated that I can't participate in my life the way I want to even though I am grateful to be participating at all. Part of recovery is acceptance. I'm working on accepting that this is they way things are right now. 

Now to the exciting news! My blood type finally changed to my sister's type! It took two years but it finally happened. I have been red cell transfusion free for almost 4 months. My hemoglobin has been holding its own even with stopping the Procrit shots.  That means my bone marrow is now working on all 3 blood lines making enough red cells, white cells and platelets. Now, if I could just get my ears to unplug and the infections to stop...I know, I'm asking a lot. When I received confirmation that my blood type had in fact changed, a very lovely SCCA nurse just sent me a casual email response, "You're blood type is A+, your sister's type." I had to ask for the test and the results. They were not as anticipatory or excited as I was apparently. It's funny what's routine to some and monumental to others. 

Please send eustachian tube equalizing thoughts my way. That is what I want for Thanksgiving. I want to say, "I am grateful my ears unplugged." But today, I am grateful for you and that I get to celebrate another holiday season. 

Much love, 

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