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Wednesday, January 30, 2019

Still Trying Though

Hello World!

Well, well, well... 2019. Not all I had hoped/planned for BUT 1 month in and I’m still trying.

I love the whole New Year New Me mentality. I’m a great procrastinator. I’m a great excuse maker. I love the idea of adulthood means if I don’t want to do it, I don’t have to. Wellll that makes change hard. Extra hard. So deadlines tend to work for me. For the entire month of December I planned and mentally geared myself up for change. I was ready. My health had another idea. So instead of kicking off the new year invigorated and ready to rage... I had pneumonia!

I went through 3 weeks of on and off again fevers. Chills. Sweats. Zero appetite - that 90lbs I worked so hard for disappeared real quick. I was sleeping a lot but not really getting rest. Coughing myself awake every night to the point I was sleeping upright. Not the way I planned to start the new year.

Thankfully after some increased steroids and added antibiotics I’m feeling like myself again. While the majority of the pneumonia is gone, I’m now at risk to get it again this winter so I have to be vigilant as to people I see and things I do. Which, truth be told, I’m not super upset about having to do right now cause it’s winter. It’s cold outside, I don’t want to be out there anyway.

But all things in the health department are moving... mostly forward... which is good. I went and got my first pair of glasses the other day. I only have to wear them at night when I drive. I had my lip biospsied again and it came back positive for squamous cell skin cancer. So I’ll be having that removed in the coming weeks. It’s in such a weird spot, it makes eating a little difficult. I use a lot of straws now. My kidneys are still functioning at subpar, no worse which is a plus. Lately my liver has been acting wonky as well. No answer to why that is besides the usual... medication side effects.

Lungs are stable, stable at 30% of normal so not great by any means... but stable is good. One thing I really want to do for 2019 is get my lung function up. My last Transplant Check up went great. Doctors are really loving that my lung function has stayed stable for almost 2 years now. That’s really good when you fight chronic rejection everyday. We are basically just waiting for that decline to start again and then we will start the process for another lung transplant. But I hate when I hear “that’s your best” or “things aren’t going to get better.” I’m stubborn. I know that. Sometimes that works for me and sometimes that works against me. I hate when someone else tries to tell me what my limits are. So I really, really, REALLY want to work on boosting this lung function to be better. And yes, I know PFTs are just a test and how I feel really matters. But I like numbers, and I want to see it on paper. I’m going to be starting Pulmonary Rehab. I’ve done this before and formal exercise is not my favorite thing to do. The idea is the 8-10 weeks of Pulmonary Rehab will help jump start a workout program I can do at home. It will show me what I’m capable of and how I can do the right exercises at home without overwhelming myself.

The other big health topic on the agenda is still the feeding tube. I have a new insurance company so hopefully that will be coming in the next few months. I have to start the whole process over again but I think this time I’ll have a better result. I’m not looking forward to having the tube but I know it will be more beneficial to have it.

My brain has been in overload since the new year. Other than my physical health I’ve been dealing with depression and anxiety again. That’s always going to be a work in progress. Not letting it control my every day is the biggest thing. I’m looking forward to working on a new CF related event for the fall. I love being part of the Board of Development on the CF Foundation. I’m going on a family vacation in April to Disneyland. I can’t wait to go camping all summer. My marriage is wonderful. My dogs are amazing. I really am enjoying my life right now.

2019 will be a great year. The future is limitless.

Breathe Easy

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