If you’re a day trader, buy stock in CVS. I think their profits are just about to go up. I think I’m single-handedly responsible.
Yesterday I heard from Kevin. I called him actually. It’s very unusual that I don’t hear back from Kevin, especially if it’s trial related. It turns out he’d written me quite the lengthy response, and I never got it.
Our e-mail at work has been a little wonky, so I’m not surprised.
NIH signed off on all the new medication, but they’re worried about one of the medications. Essentially, they’re okay with it as a short-term thing, but if I should need it long term it could jeopardize my being in the drug trial.
I know they probably don’t fully appreciate this, but the mere mention of this possibility sends shutters through my body. I try to dutifully record symptoms, and hey, if we can make them better than that’s great. But right now I don’t have any symptom, hives and joint pain included, that are so severe I’d want to be out of the trial to treat it.
I’d have to be in horrible, horrible pain or in a life threatening situation before I’d elect to drop the trial to treat something else.
I don’t know if they fully appreciate this. If my symptoms, or the medications to treat them, impact my work life, than so be it. I work very hard to keep my job, but at the end of the day, there are worse things than losing it. My lungs are doing great, and I’d like to keep it that way. Even with symptoms I can do so many things that I enjoy in life beyond just my job. I’d rather do what I can for the lungs, even if it means living with some of these other issues to do it.
And it’s not just me. If I were to leave the trial, the data would have to reflect me as having passed away. It would statistically put a dent in the results that could impact everyone. This trial isn’t just about me. It’s about everyone with HPS. I owe that to my brother. I owe it to my friends who also have fibrosis but for whatever reason haven’t been able to participate in the trial.
So when Kevin said this, I could feel my heart pounding in my chest. I made him assure me that if I filled this script, it wouldn’t knock me out.
I don’t know if my doc has in mind for me to take this long term, but it will be interesting to see if it makes any difference. It’s an auto-immune drug used to treat arthritis.
With assurances in hand that everything would be okay, at least for now, I dropped off all the new scripts at the pharmacy. The lady entered all of them, as well as the refills I needed, but they didn’t have everything in stock. It would be at least 24 hours before they’d be able to get everything.
“Do you want to wait to find out what the total will be?” the lady asked, “It will take about 20 minutes.”
No, I answered. As if I have a choice in paying it anyway.
“It will be expensive,” she warned. No kidding. Really?
I was supposed to go and pick up the meds this evening, but I decided to go home instead. I didn’t sleep well last night and I felt so, so tired. I thought if I could just get a nap, then I could go to the drug store to get some exercise later (it’s a little under a mile each way) and the line wouldn’t be as terrible as it is when everyone’s getting off work.
So much for that plan. I woke up hours later after it was dark and probably not a good idea to be walking that far. Besides, to be honest, I just didn’t feel up to it.
Yesterday I heard from Kevin. I called him actually. It’s very unusual that I don’t hear back from Kevin, especially if it’s trial related. It turns out he’d written me quite the lengthy response, and I never got it.
Our e-mail at work has been a little wonky, so I’m not surprised.
NIH signed off on all the new medication, but they’re worried about one of the medications. Essentially, they’re okay with it as a short-term thing, but if I should need it long term it could jeopardize my being in the drug trial.
I know they probably don’t fully appreciate this, but the mere mention of this possibility sends shutters through my body. I try to dutifully record symptoms, and hey, if we can make them better than that’s great. But right now I don’t have any symptom, hives and joint pain included, that are so severe I’d want to be out of the trial to treat it.
I’d have to be in horrible, horrible pain or in a life threatening situation before I’d elect to drop the trial to treat something else.
I don’t know if they fully appreciate this. If my symptoms, or the medications to treat them, impact my work life, than so be it. I work very hard to keep my job, but at the end of the day, there are worse things than losing it. My lungs are doing great, and I’d like to keep it that way. Even with symptoms I can do so many things that I enjoy in life beyond just my job. I’d rather do what I can for the lungs, even if it means living with some of these other issues to do it.
And it’s not just me. If I were to leave the trial, the data would have to reflect me as having passed away. It would statistically put a dent in the results that could impact everyone. This trial isn’t just about me. It’s about everyone with HPS. I owe that to my brother. I owe it to my friends who also have fibrosis but for whatever reason haven’t been able to participate in the trial.
So when Kevin said this, I could feel my heart pounding in my chest. I made him assure me that if I filled this script, it wouldn’t knock me out.
I don’t know if my doc has in mind for me to take this long term, but it will be interesting to see if it makes any difference. It’s an auto-immune drug used to treat arthritis.
With assurances in hand that everything would be okay, at least for now, I dropped off all the new scripts at the pharmacy. The lady entered all of them, as well as the refills I needed, but they didn’t have everything in stock. It would be at least 24 hours before they’d be able to get everything.
“Do you want to wait to find out what the total will be?” the lady asked, “It will take about 20 minutes.”
No, I answered. As if I have a choice in paying it anyway.
“It will be expensive,” she warned. No kidding. Really?
I was supposed to go and pick up the meds this evening, but I decided to go home instead. I didn’t sleep well last night and I felt so, so tired. I thought if I could just get a nap, then I could go to the drug store to get some exercise later (it’s a little under a mile each way) and the line wouldn’t be as terrible as it is when everyone’s getting off work.
So much for that plan. I woke up hours later after it was dark and probably not a good idea to be walking that far. Besides, to be honest, I just didn’t feel up to it.
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