So it's been roughly 6 weeks since I have been listed, in the same breath I can't believe that is has already been 6 weeks and I can't believe that it has only been 6 weeks. I guess this is the way I am supposed to feel, right?
The last 6 weeks have been pretty uneventful in the grand scheme of things, the oxygen man came out last week to make sure my O2 machine is in good shape and the home nurse comes every 4 weeks to flush my port.
I had my CF clinic appointment about 3 weeks ago and things are status quo, my lung function is the same but my sinuses seem to be getting worse, I was told to try and find a sinus (ENT) doctor in my area, I am hoping that I get my transplant call before I feel the absolute need to do this and that the transplant will magically make my sinus problems go away. Wishful thinking on my part probably but stubborness is a part of who I am, I feel like I have control of nearly nothing now so the need to try and regain some of that is strong.
My previous employer's fundraiser that they did for me raised nearly $14K which is absolutely amazing, I got to see a lot of people a couple of weeks ago for the annual sales conference. It was a glimpse of a former life which I seriously took for granted, also a very nice reprise of my current life, not so much my life actually just my lifestyle.
Last night was another benefit at a local bar and it was a great turnout and a good time was had by all, thanks so much to Tabitha for getting me involved with the Banding Together foundation.
I am sad today as Tabitha and Jeff left this morning for a very good friend of mine's wedding. She is getting married on a cruise and I so wish that I could be there for the wedding and the cruise, I have to remember that taking care of myself and waiting on the list is my number 1 priority, although it is what I need to do right now I find it more and more difficult everyday. I want the focus to be off of me and I want a normal life. I guess these are things that most people with CF struggle with everyday, when I was more healthy and was working it was easier to deal with, now I feel like most things revolve around me. Don't get me wrong I am eternally grateful for everyone and everything that people are doing to help me, I just want to give back and shift the focus, I want my transplant call to come and life to go back to the way it used to be.
Well enough of feeling sorry for myself and wanting change that is not going to come, today I am going to do normal things like straighten up around the house and go food shopping. I am having my niece and nephew over in a couple of days and keeping them until Saturday which I am so looking foward to. I am going to play with my dogs and do my treatments and fill out my fund transfer forms from my fundraisinig to pay a couple of medical bills. The more I do the more I realize that I need to learn to integrate parts of my old life and new life together and to accept that change of any kind is stressful and difficult and what I am feeling and going through is normal and so am I. And that I have the best family and friends in the entire world. And that I am going to be okay, I am strong and I am a fighter and it is okay to take a break from both of those roles once in a while as long as I don't linger in that break.
I have CF but it doesn't have me...
Tommy - You are the best husband in the world and I love you more than I could possibly express...
Love to all,