Tonight I gave myself the night off, which was hard to do when I feel I have so many things that need to be done, and done yesterday. I think my mind just needed a night to veg. out and settle.
Today I am feeling better about things. When Dr. Gahl gave me the report on the PFTs and the CT scan, once again I think he was expecting me to get upset. I was surprised I wasn’t more upset to be honest, but I suppose since I arrived praying my FVC wasn’t 69, an 82 didn’t sound so bad. Perhaps that was God’s way of cushioning the blow.
That night I was a bit numb, and pleasantly distracted after meeting an old college friend for dinner. The next day, however, I was walking an emotional tightrope. I woke up late, even though I knew it would take some time to get across town. I was so tired! The long days leading up to leaving on the trip, little sleep for a week, and then all the emotional energy that goes into an NIH visit – and well, I was pooped out! I finally managed to haul my sorry carcus out of bed and lug all my luggage (which I’d finally wrestled from the grasp of the airline) all the way across town.
I made it in time for a great session on fundraising, and another on marketing, then lunch, and then I joined Donna in the board boot camp. They had consultants there that were supposed to help you work as a board. I was the only HPS board person there besides Donna, who was wearing her Genetic Alliance hat for this conference. We broke up into a small group and had to say what we brought to the board that no one else could. It had nothing to do with the tests. All of a sudden I felt like sobbing. It just came over me completely unexpectedly. I dashed out of the room not wanting Donna to know I was upset because I didn’t want her to be distracted. This seems to always happen to me. I’m completely calm and collected in the heat of the moment, and then days later, out of no where, I fall apart at some inopportune time.
I went to the bathroom, tears streaming down my face, and checked all the stalls for anyone else there. Convinced I was alone, I sobbed for a few minutes, then managed to splash some water on my face and rejoin the meeting. I joined the circle, made some excuse for darting out, and joined the activity. When they got to me I thought, “Oh Lord, please don’t let this lady push me too hard today. I’m not in the mood!” She did let me off easy.
All day I was like that, just on the edge of losing it. The next day I was better though. And today hasn’t been too bad.
Ryan, my brother who also has HPS, went to NIH with me. That was a great help. My blood pressure actually stayed pretty normal. Just having someone to talk to in the waiting rooms to distract you from the gravity of what was really going on was a huge help. Still, I wish it didn’t have to be my brother.
I’ve watched other siblings as one gets sick, and the other has to help out knowing that chances are someday it will be them. I want to protect Ryan from that. At the same time, I wanted someone else to hear what the doctors said. I’m always accused of being dramatic. Since much of the family seem to call Ryan to find out my test results, rather than calling me, I wanted there to be no doubt. Denial isn’t getting us anywhere.
At my conference, Dr. Gahl turned to Ryan and asked him if he had any questions. Ryan’s mind churned and he asked about what symptoms would appear first if fibrosis was starting to appear. He asked about the asthma so many of us have. I know in Ryan’s mind he was checking these things off, reassuring himself that he was still okay.
I feel a bit guilty about being upset at all. I know there are people, friends of mine, who have PFTs worse and who, for various reasons, can't get in the trial at all. What do I have to whine about really?
Today I am feeling better about things. When Dr. Gahl gave me the report on the PFTs and the CT scan, once again I think he was expecting me to get upset. I was surprised I wasn’t more upset to be honest, but I suppose since I arrived praying my FVC wasn’t 69, an 82 didn’t sound so bad. Perhaps that was God’s way of cushioning the blow.
That night I was a bit numb, and pleasantly distracted after meeting an old college friend for dinner. The next day, however, I was walking an emotional tightrope. I woke up late, even though I knew it would take some time to get across town. I was so tired! The long days leading up to leaving on the trip, little sleep for a week, and then all the emotional energy that goes into an NIH visit – and well, I was pooped out! I finally managed to haul my sorry carcus out of bed and lug all my luggage (which I’d finally wrestled from the grasp of the airline) all the way across town.
I made it in time for a great session on fundraising, and another on marketing, then lunch, and then I joined Donna in the board boot camp. They had consultants there that were supposed to help you work as a board. I was the only HPS board person there besides Donna, who was wearing her Genetic Alliance hat for this conference. We broke up into a small group and had to say what we brought to the board that no one else could. It had nothing to do with the tests. All of a sudden I felt like sobbing. It just came over me completely unexpectedly. I dashed out of the room not wanting Donna to know I was upset because I didn’t want her to be distracted. This seems to always happen to me. I’m completely calm and collected in the heat of the moment, and then days later, out of no where, I fall apart at some inopportune time.
I went to the bathroom, tears streaming down my face, and checked all the stalls for anyone else there. Convinced I was alone, I sobbed for a few minutes, then managed to splash some water on my face and rejoin the meeting. I joined the circle, made some excuse for darting out, and joined the activity. When they got to me I thought, “Oh Lord, please don’t let this lady push me too hard today. I’m not in the mood!” She did let me off easy.
All day I was like that, just on the edge of losing it. The next day I was better though. And today hasn’t been too bad.
Ryan, my brother who also has HPS, went to NIH with me. That was a great help. My blood pressure actually stayed pretty normal. Just having someone to talk to in the waiting rooms to distract you from the gravity of what was really going on was a huge help. Still, I wish it didn’t have to be my brother.
I’ve watched other siblings as one gets sick, and the other has to help out knowing that chances are someday it will be them. I want to protect Ryan from that. At the same time, I wanted someone else to hear what the doctors said. I’m always accused of being dramatic. Since much of the family seem to call Ryan to find out my test results, rather than calling me, I wanted there to be no doubt. Denial isn’t getting us anywhere.
At my conference, Dr. Gahl turned to Ryan and asked him if he had any questions. Ryan’s mind churned and he asked about what symptoms would appear first if fibrosis was starting to appear. He asked about the asthma so many of us have. I know in Ryan’s mind he was checking these things off, reassuring himself that he was still okay.
I feel a bit guilty about being upset at all. I know there are people, friends of mine, who have PFTs worse and who, for various reasons, can't get in the trial at all. What do I have to whine about really?
Comments