Thursday I couldn’t stop grinning. I thought my cheeks might crack because I just couldn’t wipe the grin off my face. Even Kevin’s lecture about losing weight didn’t dampen my mood – or at least it had a delayed reaction.
I think having nearly an entire week at the NIH is exactly what I needed. The recent weeks upon weeks of feeling tired, sick and generally run down have been hard and being at NIH was like getting sent away for a while. I did take work, but since I was unable to access the server I really didn’t get much work done. Perhaps that was God’s way of giving me a vacation. Grin! I think it helped. I feel rested for the first time in a long while.
Mind you, I’d rather be vacationing by spending the holidays in Germany with my mom and brother, or doing something fun or even just being at home and getting my personal life together. Even so, this was a particularly nice NIH trip. No exceedingly painful tests, lots of rest, plenty of relaxation and time to myself, and I got to see some old friends.
It really did help that I got a sneak peek at my pulmonary function tests. I have no patience. It’s an occupational hazard. I’d never make a deadline if I were patient for things. I want it, and I want it now, whether it be a photo, interview or test results. Grin! Typically as the days grow closer for me to go to NIH I get increasingly nervous and go through this whole mental process of preparing myself for bad news. And when I get there that tension only increases.
I always try to keep myself busy while I’m there so I don’t become a complete basket case. NIH is the only place I ever have time to paint, so I often bring my paints and stay busy that way. I walk up and down the halls reading every poster, examining every painting or if there’s a scientific display, carefully reading each poster presentation. I talk to friends on the phone, and often friends in the area come to visit. I don’t sit still. I try not to go to bed until I’m about to just fall over because I don’t want to lay in the dark just thinking. I often wonder if the nurses are noting how late I stay up. No wonder she complains of fatigue, they must think. She never goes to bed! And when I do go to sleep it’s not usually a good sleep. I know someone is going to turn the light on at O’dark thirty and want blood.
If you have to wait until the end to get your test results the tension builds like pressure in a rice cooker. What if there’s a change and it isn’t good? What will that mean? I think that perhaps that will be one of the nice things about going back to NIH every four months. The changes to my status are likely to be more gradual and subtle as opposed to not having been seen in two years and thus having results that could be very different from the last visit.
This time, since I got to look at those PFTs, I could relax. I knew I might not get all good news, but I knew that the news wouldn’t likely be drastic. This really had been a concern with the recent strep and all the breathing problems I’d been having. I was worried.
Now that the first report was great, however, I have a different worry. Don’t get me wrong! I’m not complaining! But, I worry that the friends and family I’ve worked so hard to try to get to understand the scope of this problem will now think everything is okay. It’s hard to get people to understand how tired I feel sometimes. It’s hard to make them understand why I devote so much time to Hermansky-Pudlak Syndrome. It’s hard to make them understand why I can’t be there for every holiday, every special occasion, etc. It’s hard for them to understand all the emotional stuff I carry with me and balance every day. I look fine. I feel fine a lot. But I’m not always fine and that can be frustrating when you’re expected to be perfectly fine.
I’m happy. Things are good. But I’m not cured. This drug isn’t the cure. The problem is still there. The likelihood, even if I’m getting the drug, is that I will get worse. Hopefully the drug will slow down the progress of my fibrosis until the next scientific leap – but it isn’t supposed to stop it. I’m not magically better. I’m just happily the same.
I think having nearly an entire week at the NIH is exactly what I needed. The recent weeks upon weeks of feeling tired, sick and generally run down have been hard and being at NIH was like getting sent away for a while. I did take work, but since I was unable to access the server I really didn’t get much work done. Perhaps that was God’s way of giving me a vacation. Grin! I think it helped. I feel rested for the first time in a long while.
Mind you, I’d rather be vacationing by spending the holidays in Germany with my mom and brother, or doing something fun or even just being at home and getting my personal life together. Even so, this was a particularly nice NIH trip. No exceedingly painful tests, lots of rest, plenty of relaxation and time to myself, and I got to see some old friends.
It really did help that I got a sneak peek at my pulmonary function tests. I have no patience. It’s an occupational hazard. I’d never make a deadline if I were patient for things. I want it, and I want it now, whether it be a photo, interview or test results. Grin! Typically as the days grow closer for me to go to NIH I get increasingly nervous and go through this whole mental process of preparing myself for bad news. And when I get there that tension only increases.
I always try to keep myself busy while I’m there so I don’t become a complete basket case. NIH is the only place I ever have time to paint, so I often bring my paints and stay busy that way. I walk up and down the halls reading every poster, examining every painting or if there’s a scientific display, carefully reading each poster presentation. I talk to friends on the phone, and often friends in the area come to visit. I don’t sit still. I try not to go to bed until I’m about to just fall over because I don’t want to lay in the dark just thinking. I often wonder if the nurses are noting how late I stay up. No wonder she complains of fatigue, they must think. She never goes to bed! And when I do go to sleep it’s not usually a good sleep. I know someone is going to turn the light on at O’dark thirty and want blood.
If you have to wait until the end to get your test results the tension builds like pressure in a rice cooker. What if there’s a change and it isn’t good? What will that mean? I think that perhaps that will be one of the nice things about going back to NIH every four months. The changes to my status are likely to be more gradual and subtle as opposed to not having been seen in two years and thus having results that could be very different from the last visit.
This time, since I got to look at those PFTs, I could relax. I knew I might not get all good news, but I knew that the news wouldn’t likely be drastic. This really had been a concern with the recent strep and all the breathing problems I’d been having. I was worried.
Now that the first report was great, however, I have a different worry. Don’t get me wrong! I’m not complaining! But, I worry that the friends and family I’ve worked so hard to try to get to understand the scope of this problem will now think everything is okay. It’s hard to get people to understand how tired I feel sometimes. It’s hard to make them understand why I devote so much time to Hermansky-Pudlak Syndrome. It’s hard to make them understand why I can’t be there for every holiday, every special occasion, etc. It’s hard for them to understand all the emotional stuff I carry with me and balance every day. I look fine. I feel fine a lot. But I’m not always fine and that can be frustrating when you’re expected to be perfectly fine.
I’m happy. Things are good. But I’m not cured. This drug isn’t the cure. The problem is still there. The likelihood, even if I’m getting the drug, is that I will get worse. Hopefully the drug will slow down the progress of my fibrosis until the next scientific leap – but it isn’t supposed to stop it. I’m not magically better. I’m just happily the same.
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