Anxious. That's what I feel the most these days. I was never one of those who, during stressful times, got that "knot in the stomach" as many do. Many lose their appetites; I never would. But this is a whole new ballgame. I do have a knot in my stomach all the time and my appetite has been affected. This is uncharted territory for me.
That feeling of anxiety of WHEN will the call come. How much longer will I have to wait. Everyone tells me they believe it will happen. My Lung Allocation Score is high enough that I should get a call when a match comes up. But it's waiting for that match. Aside from my score, the only other factors are blood type and size; i.e. a 6' tall man or woman cannot donate their lungs to me. So the donor has to be very close in size as I am and have the right blood type and then my score has to be the one that the UNOS computer system picks as next. It could happen at any time, or it could take six months or more or never. Hence the anxiety.
My other condition, Interstitial Cystitis, which this Blog was started to talk about, has been bothering me even more since this lung disease began. The pain is worse, all the symptoms of my IC are worse and I haven't been able to go see that doctor because it's a monumental undertaking needing so much portable oxygen, plus I can't sit in the waiting room for and hour or two and risk running out of oxygen because he's running late. But I finally called and spoke with his nurse and together we came up with a plan. He's a wonderful doctor and he wanted to do all he could to help me if I could get there. Well, it takes two other people and a suitcase on wheels filled with 4 spare oxygen tanks to get me there, but we managed to do that yesterday. I got my treatment and my bladder felt so much better it was worth all the hard work it took to get me there. My bladder felt better for a while.
We're going to do it all over again next week so I can go see my psychologist. I am long overdue for an appointment with her and all this anxiety needs some talking out. I need her help. But these trips take a toll on me and it's rough going.
Everyone says "try not to think about it". Really? If there's something to do to take my mind off my situation, I've tried it. But it's the first thing that hits me when I wake up in the morning, and the last thing I am thinking about as I try to fall asleep at night listening to the oxygen & Bipap machines keeping me breathing.
It's hard. But yes, I am trying not to think about it so much. I'm not doing a very good job at that but I keep trying.
Try Not to Think About It! OK, I'll try!