"I am pleasant, dammit!"
This feels like one of those weeks where I probably need to apologize to everyone again. I feel like I've been channeling Ouiser—"I'm not crazy. I've just been in a very bad mood for 40 years." Or, well, 35 in my case. THERE'S STILL TIME. I've been crazy busy and had very little time to myself, which makes me just a little cranky. Sorry if you had to deal with me this week and you thought I was awful. I probably was.
So, anyway, I just finished week 4 of the trial drug, making it officially one month. And dear 8 pound 6 ounce newborn baby Jesus, what a month it has been. I know February only has 28 days, but they have gone on FOREVER. Every time I think I'm feeling better, my friend comes to visit and reminds me that I'm not. That's right folks, guess who's back, back again... Since about Friday, I had been planning on writing this super-optimistic post about how I had been feeling better this week. Still fatigued, but I really wasn't sure if that was even due to the drug or if it was actually just a side effect of the massive amounts of adulting I had to do this week. But then today happened, and this is not going to be that post. This morning I was in so much pain that I had to resort to taking a prescription pain killer and lying on the couch in the fetal position for about four hours. I'm not going to bore you with all the details of that, though. I mean, at least I got caught up on Fear the Walking Dead, right?? (Please comment if you find Madison and Strand as annoying as I do and wish they would go off somewhere together and that somewhere was not on the show anymore. I digress.)
What I am going to bore you with today is something I came to terms with while on the couch this morning. Because, I'm not going to lie to you, when I woke up in pain and made my discovery, I seriously considered hanging it up and leaving the trial already. I simply cannot do this every other week, I thought. It's no way to live. And I know I'm right. It's not. I don't know what anyone else's experience is with chronic pain, but sometimes it reaches a level where you just go off to new places in your head. Sometimes they're good. Often they're not. My point is, as I was lying on the couch this morning, I went to one of those places in my head—a place of wisdom and acknowledgement and acceptance, for once—and I realized that I have to see this trial through. If not for me, for the other 170 million+ women worldwide who struggle with trying to balance having endo and leading a normal life and for the 170 million who will come after us if we don't learn more about it.
I don't know if I told you this before, but after I signed on to the trial, I also agreed to participate in a sub-study involving genetic testing. This research will, hopefully, help doctors better understand how endometriosis works, what causes it, if it can be predicted and possibly prevented, and how individuals respond to drugs. I didn't have to sign on for the sub-study, but something in my gut told me to do it. How can we ever find an effective treatment or, dare I dream, a cure, if we don't even understand what causes it? I will never know the results of these tests or even what tests are being performed. The nurse simply (haha, "simply") takes some additional blood and tissue samples during my visits and sends them off to the researchers. The tissue samples are extremely painful. My veins regularly get blown out when they are collecting the blood samples. But I will continue. Regardless of what I am going through, I am now on a mission. If my pain helps someone else avoid it, then at least it meant something.
Until next week.
Yours,
Test Subject 521-002
So, anyway, I just finished week 4 of the trial drug, making it officially one month. And dear 8 pound 6 ounce newborn baby Jesus, what a month it has been. I know February only has 28 days, but they have gone on FOREVER. Every time I think I'm feeling better, my friend comes to visit and reminds me that I'm not. That's right folks, guess who's back, back again... Since about Friday, I had been planning on writing this super-optimistic post about how I had been feeling better this week. Still fatigued, but I really wasn't sure if that was even due to the drug or if it was actually just a side effect of the massive amounts of adulting I had to do this week. But then today happened, and this is not going to be that post. This morning I was in so much pain that I had to resort to taking a prescription pain killer and lying on the couch in the fetal position for about four hours. I'm not going to bore you with all the details of that, though. I mean, at least I got caught up on Fear the Walking Dead, right?? (Please comment if you find Madison and Strand as annoying as I do and wish they would go off somewhere together and that somewhere was not on the show anymore. I digress.)
What I am going to bore you with today is something I came to terms with while on the couch this morning. Because, I'm not going to lie to you, when I woke up in pain and made my discovery, I seriously considered hanging it up and leaving the trial already. I simply cannot do this every other week, I thought. It's no way to live. And I know I'm right. It's not. I don't know what anyone else's experience is with chronic pain, but sometimes it reaches a level where you just go off to new places in your head. Sometimes they're good. Often they're not. My point is, as I was lying on the couch this morning, I went to one of those places in my head—a place of wisdom and acknowledgement and acceptance, for once—and I realized that I have to see this trial through. If not for me, for the other 170 million+ women worldwide who struggle with trying to balance having endo and leading a normal life and for the 170 million who will come after us if we don't learn more about it.
I don't know if I told you this before, but after I signed on to the trial, I also agreed to participate in a sub-study involving genetic testing. This research will, hopefully, help doctors better understand how endometriosis works, what causes it, if it can be predicted and possibly prevented, and how individuals respond to drugs. I didn't have to sign on for the sub-study, but something in my gut told me to do it. How can we ever find an effective treatment or, dare I dream, a cure, if we don't even understand what causes it? I will never know the results of these tests or even what tests are being performed. The nurse simply (haha, "simply") takes some additional blood and tissue samples during my visits and sends them off to the researchers. The tissue samples are extremely painful. My veins regularly get blown out when they are collecting the blood samples. But I will continue. Regardless of what I am going through, I am now on a mission. If my pain helps someone else avoid it, then at least it meant something.
Until next week.
Yours,
Test Subject 521-002
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