I really am getting so I hate doing these health updates – but I need to document and it beats doing it every day.
For the first time in history I missed sessions at the HPS Conference. I missed THREE sessions – it almost killed me. I even missed Dr. G’s session which I REALLY wanted to hear because she was updating us on what the NIH has learned from those who have donated lung lavage fluid as well as what they’ve learned from explanted lungs. I also missed the Lessons Learned session and the closing session.
I was massively fighting off fatigue at conference. And, Sunday morning I went through several ostomy pouches. I was having a hard time getting one to stick.
Monday after conference I saw Dr. Seward. He had an idea to try for the ostomy bleeding and I’m doing a little of my own research now – we’ll see. This weekend I went through two weeks worth of pouches in two days. It wasn’t even that there was a lot of bleeding. It just seems that at a certain point the skin is so irritated that nothing will stick to it.
Tuesday Letty fixed me a wonderful lunch. I was so tired I fell asleep while she was cooking. When she woke me up I had no idea where I was or who she was – kind of scary – but I came around. At the airport I used to never ask for assistance. Now I do only because with the CPAP, meds and computer I’m a nightmare at security. I still refuse the wheelchair, however. This time I felt so tired and so sore in the joints that I gave up. I was happy to ride!
And, lesson learned – you wiz through security in a wheel chair – you get your own line!
I guess it’s a pride thing I should get over, but I always feel badly because I know everyone is assuming I need help because of my vision. It isn’t the vision at all – it’s all the other things going on with me. I’m so programmed to be a walking PR agent for vision impairments that I have a hard time with this public image confusion.
I know – Heather – get over it.
For the first time in history I missed sessions at the HPS Conference. I missed THREE sessions – it almost killed me. I even missed Dr. G’s session which I REALLY wanted to hear because she was updating us on what the NIH has learned from those who have donated lung lavage fluid as well as what they’ve learned from explanted lungs. I also missed the Lessons Learned session and the closing session.
I was massively fighting off fatigue at conference. And, Sunday morning I went through several ostomy pouches. I was having a hard time getting one to stick.
Monday after conference I saw Dr. Seward. He had an idea to try for the ostomy bleeding and I’m doing a little of my own research now – we’ll see. This weekend I went through two weeks worth of pouches in two days. It wasn’t even that there was a lot of bleeding. It just seems that at a certain point the skin is so irritated that nothing will stick to it.
Tuesday Letty fixed me a wonderful lunch. I was so tired I fell asleep while she was cooking. When she woke me up I had no idea where I was or who she was – kind of scary – but I came around. At the airport I used to never ask for assistance. Now I do only because with the CPAP, meds and computer I’m a nightmare at security. I still refuse the wheelchair, however. This time I felt so tired and so sore in the joints that I gave up. I was happy to ride!
And, lesson learned – you wiz through security in a wheel chair – you get your own line!
I guess it’s a pride thing I should get over, but I always feel badly because I know everyone is assuming I need help because of my vision. It isn’t the vision at all – it’s all the other things going on with me. I’m so programmed to be a walking PR agent for vision impairments that I have a hard time with this public image confusion.
I know – Heather – get over it.
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