Hot tears prick my eyes and I blink fast to try and keep them at bay. The admitting nurse bustles through her paperwork, asking my maiden name, religious preference, husband's phone number. She looks up and catches me blink back a tear.
"I'm a little nervous about the procedure," I mumble. She stops her typing, comes over to me and puts an arm around me and clucks maternally. This just makes it worse. I'm not nervous, but I didn't know how to explain to a complete stranger that I just shouldn't be here. I belong on the other side of the waiting room, the clinic side. Where we meet in rooms with computers and tables, and we talk and we shake hands and we pay $20 and go on with our lives. I don't belong on this side, where I have to wear a bracelet and a gown and be rolled around in a bed.
"I'm not sick!" I want to scream, as the next nurse points out the gowns, and the little socks with grips. "I'm not sick," I want to scream as she gives me instructions to prep for the flex sig procedure. I stare in the mirror at the girl wearing the gown, who was no make up on, a frown on her face and tears escaping the corners of her eyes. From the bathroom of my hospital room, I text Jess. "I'm having a meltdown," I tell her. She texts me long arms hugs and reminds me to breathe, that the procedure will be short and I don't have to make any decisions right now.
Thirty minutes ago, I was sitting in the clinic room, talking to Dr. B. He explained why he wanted to do a flex sig (to eliminate any possibilities that this was anything other than UC), told me he fully expected it to be UC and if it was, these were my two choices. That's what those hot things started building up behind my eyes. When the lump started pressing hard in my throat. "Breathe, Megs," I told myself as he sketched out on paper in front of me the two choices, the different classes, risks, time lines, side effects. None of this was anything astoundly new, I had gone over both of these exact same choices in 2005. Different room, different doctor, different hospital, same choices.
It's just that.... I had forgotten what it felt like to feel this way. To feel like a sick person. It doesn't feel like me, anymore.
But I have choices, and choices are good. I know this. In 2005, surgery was looking like a very real option. Today it wasn't even on the table, and I am grateful for that. I have choices.
I guess, despite the very real presence of symptoms and the very real disruptance of my life over the last 16 days, I just kept expecting to wake up and feel better. That the steroids were still waiting to kick in, and that this would just be a small and soon forgotten about lapse. Sitting there looking at the names of those medicines hit me square in the gut that this was real, I was sick and those were my choices.
When I was 23, the choice was simple. 6mp is an older drug. It's been around and tested for 30 years. It has minimal side effects, other than a compromised immune system and excellent effectiveness. Remicade, my other choice, had just been newly approved for UC in 2005. My doctor (at the time) was excited about it's possibilities, but still a little nervous about it given his complete inexperience with a drug in it's infancy. Remicade was boasted to work immediately, 6mp had a 8-12 week build-up. I knew at the time that steroids would buy me 6-8 weeks of wellness, and I chose 6mp. As I tapered down the steroids, the 6mp kicked in. In March 2006, I went off steroids for the last time and I was in remission. Cue the kick line.
Cut to January 2009. After doing some research on 6mp and learning that one day when I had children I wouldn't be able to breastfeed, I decided to try tapering off. I wanted plenty of time to be off the medicine to see if I could stay healthy without it. Dr. B was not estactic about this game plan, but somewhere in the midst of "it's your body and your decision," he consented. Nervously. 6mp doesn't take long to get out of the system, and at the 3 month point, we both breathed a small sigh of relief that hey, I might be able to do this. (This is where the "colitis is a disease of recurrence" talk came in that I oh so smugly laughed at. Oh, the irony.)
I am pretty sure at this point in the game my doctor would love to grab me by the shoulders and shake some "I told you so, child" into me. However, by some modicum of professionalism and restraint he resisted the urge to do so. I have very emphatically received the message, however, that whatever medication I choose to go now, should I achieve remission, I would be very highly recommended to stay on said medication. Loud and clear, captain.
I came home from the appointment feeling very despondent. I knew I should be happy that I had two choices, but I just felt resistant that I had to make a choice, period. Add to that a day of not eating or drinking in preparation for my procedure, and I felt fatigued, headachey and squirrely. My brain literally felt like it was pulling away from the insides of my skull, a feat that I had only been able to accomplish thus far in my life through the consumption of 6 whiskey and sprites, followed by three Hot Diggity Dogs. (I am sorry, Mommy Dear, that you called me at this immediate juncture. I am surprised you do not have a plane ticket in hand right now.) I came home and went to bed. For the next 16 hours, I slept fitfully, waking up to drink Gatorade, converse briefly with Matt and possibly let the dog out at some point. This may have been the middle of the night, and I may have worn my bathrobe in the front yard. Whether this was a REM cycle or real life, only Buddy and any insomniac neighbors know.
Sometime around noon, I got up off the couch (where I had transferred at some unknown point), took a shower and got dressed. It was then that I decided my pity party was coming to an abrupt end. No one had brought cupcakes anyways, so there seemed to be no point in continuing it.
I'm not sure what sparked this about face. Perhaps it's the hopefulness that one of these two drugs is going to restore me to normalcy, or the delirium of 2/3rds of a day of sleep, but I think mostly it's the memory of a girl who was sick and despondent and fretful for three years. I don't want to be the person I just was for the last 16 hours. I looked in the mirror at the girl in the hospital gown and I remembered her, and it scared me. I am sorry that she experienced this once, and I don't fault for her for being so sad about it, but I don't want to revisit it.
I am not crazy about either choice, because both come with their tri-fold sheet of side effects, risks and other warnings. 6mp still comes with its long build up, but I've had a track record of success with it. Remicade holds promises of immediate, acute relief but is still bit of an unknown and a newer drug. At 27, I'm thinking of drugs in a way I never did at 23... in some years time, I may not be the only person whose body they effect. And if I got the message right from my doctor, some years time is going to be the anticipated duration of whatever drug works for me next. That factor seems a bit surreal, but I guess at the end of the day the bottom line is healthy me is going to be best as far as all that goes.
Being a person with a chronic disease comes with a different story line, one that I guess I had forgotten I was a main character in. I might not have chosen for my body to do this, but I'm pretty sure at the end of the day, I do still get to choose what my mind does. I don't know how my body is going to feel tonight, or tomorrow, or the next day. I don't know when I'll eat a salad or drink a glass of wine again. I don't know when I'll have to energy to spring out of bed at 6 am, teach a class at 2 pm or cook dinner at 5 pm. I don't know when I'll eat something without looking around for the nearest bathroom, or get in the car without counting miles between exits. And I don't know which drug I choose. But I do not choose to be sick, and sad, and fearful. I choose to be patient, and hopeful and optimistic. I will start there.
"I'm a little nervous about the procedure," I mumble. She stops her typing, comes over to me and puts an arm around me and clucks maternally. This just makes it worse. I'm not nervous, but I didn't know how to explain to a complete stranger that I just shouldn't be here. I belong on the other side of the waiting room, the clinic side. Where we meet in rooms with computers and tables, and we talk and we shake hands and we pay $20 and go on with our lives. I don't belong on this side, where I have to wear a bracelet and a gown and be rolled around in a bed.
"I'm not sick!" I want to scream, as the next nurse points out the gowns, and the little socks with grips. "I'm not sick," I want to scream as she gives me instructions to prep for the flex sig procedure. I stare in the mirror at the girl wearing the gown, who was no make up on, a frown on her face and tears escaping the corners of her eyes. From the bathroom of my hospital room, I text Jess. "I'm having a meltdown," I tell her. She texts me long arms hugs and reminds me to breathe, that the procedure will be short and I don't have to make any decisions right now.
Thirty minutes ago, I was sitting in the clinic room, talking to Dr. B. He explained why he wanted to do a flex sig (to eliminate any possibilities that this was anything other than UC), told me he fully expected it to be UC and if it was, these were my two choices. That's what those hot things started building up behind my eyes. When the lump started pressing hard in my throat. "Breathe, Megs," I told myself as he sketched out on paper in front of me the two choices, the different classes, risks, time lines, side effects. None of this was anything astoundly new, I had gone over both of these exact same choices in 2005. Different room, different doctor, different hospital, same choices.
It's just that.... I had forgotten what it felt like to feel this way. To feel like a sick person. It doesn't feel like me, anymore.
But I have choices, and choices are good. I know this. In 2005, surgery was looking like a very real option. Today it wasn't even on the table, and I am grateful for that. I have choices.
I guess, despite the very real presence of symptoms and the very real disruptance of my life over the last 16 days, I just kept expecting to wake up and feel better. That the steroids were still waiting to kick in, and that this would just be a small and soon forgotten about lapse. Sitting there looking at the names of those medicines hit me square in the gut that this was real, I was sick and those were my choices.
When I was 23, the choice was simple. 6mp is an older drug. It's been around and tested for 30 years. It has minimal side effects, other than a compromised immune system and excellent effectiveness. Remicade, my other choice, had just been newly approved for UC in 2005. My doctor (at the time) was excited about it's possibilities, but still a little nervous about it given his complete inexperience with a drug in it's infancy. Remicade was boasted to work immediately, 6mp had a 8-12 week build-up. I knew at the time that steroids would buy me 6-8 weeks of wellness, and I chose 6mp. As I tapered down the steroids, the 6mp kicked in. In March 2006, I went off steroids for the last time and I was in remission. Cue the kick line.
Cut to January 2009. After doing some research on 6mp and learning that one day when I had children I wouldn't be able to breastfeed, I decided to try tapering off. I wanted plenty of time to be off the medicine to see if I could stay healthy without it. Dr. B was not estactic about this game plan, but somewhere in the midst of "it's your body and your decision," he consented. Nervously. 6mp doesn't take long to get out of the system, and at the 3 month point, we both breathed a small sigh of relief that hey, I might be able to do this. (This is where the "colitis is a disease of recurrence" talk came in that I oh so smugly laughed at. Oh, the irony.)
I am pretty sure at this point in the game my doctor would love to grab me by the shoulders and shake some "I told you so, child" into me. However, by some modicum of professionalism and restraint he resisted the urge to do so. I have very emphatically received the message, however, that whatever medication I choose to go now, should I achieve remission, I would be very highly recommended to stay on said medication. Loud and clear, captain.
I came home from the appointment feeling very despondent. I knew I should be happy that I had two choices, but I just felt resistant that I had to make a choice, period. Add to that a day of not eating or drinking in preparation for my procedure, and I felt fatigued, headachey and squirrely. My brain literally felt like it was pulling away from the insides of my skull, a feat that I had only been able to accomplish thus far in my life through the consumption of 6 whiskey and sprites, followed by three Hot Diggity Dogs. (I am sorry, Mommy Dear, that you called me at this immediate juncture. I am surprised you do not have a plane ticket in hand right now.) I came home and went to bed. For the next 16 hours, I slept fitfully, waking up to drink Gatorade, converse briefly with Matt and possibly let the dog out at some point. This may have been the middle of the night, and I may have worn my bathrobe in the front yard. Whether this was a REM cycle or real life, only Buddy and any insomniac neighbors know.
Sometime around noon, I got up off the couch (where I had transferred at some unknown point), took a shower and got dressed. It was then that I decided my pity party was coming to an abrupt end. No one had brought cupcakes anyways, so there seemed to be no point in continuing it.
I'm not sure what sparked this about face. Perhaps it's the hopefulness that one of these two drugs is going to restore me to normalcy, or the delirium of 2/3rds of a day of sleep, but I think mostly it's the memory of a girl who was sick and despondent and fretful for three years. I don't want to be the person I just was for the last 16 hours. I looked in the mirror at the girl in the hospital gown and I remembered her, and it scared me. I am sorry that she experienced this once, and I don't fault for her for being so sad about it, but I don't want to revisit it.
I am not crazy about either choice, because both come with their tri-fold sheet of side effects, risks and other warnings. 6mp still comes with its long build up, but I've had a track record of success with it. Remicade holds promises of immediate, acute relief but is still bit of an unknown and a newer drug. At 27, I'm thinking of drugs in a way I never did at 23... in some years time, I may not be the only person whose body they effect. And if I got the message right from my doctor, some years time is going to be the anticipated duration of whatever drug works for me next. That factor seems a bit surreal, but I guess at the end of the day the bottom line is healthy me is going to be best as far as all that goes.
Being a person with a chronic disease comes with a different story line, one that I guess I had forgotten I was a main character in. I might not have chosen for my body to do this, but I'm pretty sure at the end of the day, I do still get to choose what my mind does. I don't know how my body is going to feel tonight, or tomorrow, or the next day. I don't know when I'll eat a salad or drink a glass of wine again. I don't know when I'll have to energy to spring out of bed at 6 am, teach a class at 2 pm or cook dinner at 5 pm. I don't know when I'll eat something without looking around for the nearest bathroom, or get in the car without counting miles between exits. And I don't know which drug I choose. But I do not choose to be sick, and sad, and fearful. I choose to be patient, and hopeful and optimistic. I will start there.
Trust me, nobody looks good in this color blue.
2 comments:
Ok, so I should have read this instead of making you tell it to me on the phone. But it sounds like 16 hours of sleep and some time to reflect has made you more confident in your decision. Just remember, "you can do hard things." love ya!
That's ok - it was good to talk PLUS I got to thank you for my basket... which I just noticed the "sign" that ya'll put in there. Very creative.
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