It's not the witches or warlocks, the skeletons or the Palin effigies that frighten me most, it's the idea of serving myself up on a silver platter to the Pharma-Gods in order to experiment with my body in the name of science or at least in the name of future profits.
Granted, looking back on this past year, things have gone exceptionally well for me, but I had no clue it was going to be like this. I had that one big scare several months ago when two people had serious adverse events from Fingolimod (the one in the coma with viral meningitis and the other who died from Chicken Pox). Then I immediately had a flare up of HSV as if to test the theory of whether or not I, too, would be adversely affected if the virus was active. As a bonus fright, I was examined by my GYN and told I had a cyst on my right ovary that needed to be checked out.
Being a lab rat is not without terror. From reading over the informed consent where they present all the possible scenarios of worst case side effects, to undergoing strange tests and never knowing the results, for someone like me who is a big sissy and an even bigger hypochondriac, it's been a scary ride.
Even after surviving a year of the study and experiencing amazing results that I never even dared to hope for, I still had a chill come over me the day they handed me the updated consent to sign (reflecting the two serious *Adverse Events*) in order to get into the Extension Phase, along with my ID card I now carry.
The ID card identifies me as a clinical trial patient and explains it a little bit, then gives all the contact info for the Clinical Trial coordinator, the neuro, and the Research Department in general...just in case.
"JUST IN CASE WHAT??!" my brain screamed as I envisioned myself being wheeled into an ER from a serious accident of some sort that requires them to cut my clothes off me while I can't speak, and they see my legs are hairy (because who ever sees them, so why bother) and my undies aren't as fresh as they should be (since I apparently just got the crap scared out of me in a serious accident).
Heck, those things are scary enough, but to think somehow the reason for my visit might be BECAUSE of the Fingolimod and I might be unable to go into a long winded explanation of my situation...well that's all new fodder for the Worry Machine that is my brain.
All this sort of explained to me, in a light bulb, "aha" moment, the reason we clinical trial patients seem to have an unnatural attachment to our Trial Coordinators.
It was brought up in a recent post on the secret (well I blew that, didn't I?!) Yahoo Group for us fingo heads. It's a private group where all us lab rats ingesting chinese fungus gather to share our stories and compare notes. (If you are a Fingo Head and want to join, sign up at: http://health.groups.yahoo.com/group/fty720/).
Anyhow, someone mentioned that their Trial Coordinator left and they were feeling uneasy transitioning to the new one since they'd gotten so attached to their old one.
Having been through this very scenario myself early on in my trial, I could relate to the anxiety level the poster was feeling. I am attached to my group at the research department as well. Heck, that could be a big factor in why I signed on for the Extension Phase. They're just about the only group of real life acquaintances that I see on any sort of regular basis since I finally stopped walking my 10-year-old to class and chatting with all the school employees daily (my mother said I had to "cut the cord").
I have my Study Nurse on speed dial and she thought that was funny when I told her. What? Did she think an admitted hypochondriac who resides 2 hours from the study center would settle for anything less? I'd prefer they moved the study center next door to me and have all the staff reside on premises, but since that's not gonna happen, I have her on speed dial.
As we head off into this Halloween night, I'll be taking my little Count Dracula door to door to get his fair share of goodies. I'll also be practicing "Spread the Wealth" when we get home as I tax his bucket for chocolate.
I wanted to dress up, too, but I guess the costume I was looking for was just too scary to even comprehend. I wanted a human-sized exercise wheel so I could go as a Lab Rat. Muahahahahahahaha.
Be afraid, be very afraid.
Happy Halloween, everyone!
Granted, looking back on this past year, things have gone exceptionally well for me, but I had no clue it was going to be like this. I had that one big scare several months ago when two people had serious adverse events from Fingolimod (the one in the coma with viral meningitis and the other who died from Chicken Pox). Then I immediately had a flare up of HSV as if to test the theory of whether or not I, too, would be adversely affected if the virus was active. As a bonus fright, I was examined by my GYN and told I had a cyst on my right ovary that needed to be checked out.
Being a lab rat is not without terror. From reading over the informed consent where they present all the possible scenarios of worst case side effects, to undergoing strange tests and never knowing the results, for someone like me who is a big sissy and an even bigger hypochondriac, it's been a scary ride.
Even after surviving a year of the study and experiencing amazing results that I never even dared to hope for, I still had a chill come over me the day they handed me the updated consent to sign (reflecting the two serious *Adverse Events*) in order to get into the Extension Phase, along with my ID card I now carry.
The ID card identifies me as a clinical trial patient and explains it a little bit, then gives all the contact info for the Clinical Trial coordinator, the neuro, and the Research Department in general...just in case.
"JUST IN CASE WHAT??!" my brain screamed as I envisioned myself being wheeled into an ER from a serious accident of some sort that requires them to cut my clothes off me while I can't speak, and they see my legs are hairy (because who ever sees them, so why bother) and my undies aren't as fresh as they should be (since I apparently just got the crap scared out of me in a serious accident).
Heck, those things are scary enough, but to think somehow the reason for my visit might be BECAUSE of the Fingolimod and I might be unable to go into a long winded explanation of my situation...well that's all new fodder for the Worry Machine that is my brain.
All this sort of explained to me, in a light bulb, "aha" moment, the reason we clinical trial patients seem to have an unnatural attachment to our Trial Coordinators.
It was brought up in a recent post on the secret (well I blew that, didn't I?!) Yahoo Group for us fingo heads. It's a private group where all us lab rats ingesting chinese fungus gather to share our stories and compare notes. (If you are a Fingo Head and want to join, sign up at: http://health.groups.yahoo.com/group/fty720/).
Anyhow, someone mentioned that their Trial Coordinator left and they were feeling uneasy transitioning to the new one since they'd gotten so attached to their old one.
Having been through this very scenario myself early on in my trial, I could relate to the anxiety level the poster was feeling. I am attached to my group at the research department as well. Heck, that could be a big factor in why I signed on for the Extension Phase. They're just about the only group of real life acquaintances that I see on any sort of regular basis since I finally stopped walking my 10-year-old to class and chatting with all the school employees daily (my mother said I had to "cut the cord").
I have my Study Nurse on speed dial and she thought that was funny when I told her. What? Did she think an admitted hypochondriac who resides 2 hours from the study center would settle for anything less? I'd prefer they moved the study center next door to me and have all the staff reside on premises, but since that's not gonna happen, I have her on speed dial.
As we head off into this Halloween night, I'll be taking my little Count Dracula door to door to get his fair share of goodies. I'll also be practicing "Spread the Wealth" when we get home as I tax his bucket for chocolate.
I wanted to dress up, too, but I guess the costume I was looking for was just too scary to even comprehend. I wanted a human-sized exercise wheel so I could go as a Lab Rat. Muahahahahahahaha.
Be afraid, be very afraid.
Happy Halloween, everyone!
3 comments:
I applaud your bravery. We are all guinea pigs in a sense, but ingesting chinese fungus goes above and beyond the call of duty in my book. I was in a trial once and would consider it again. My thoughts are for the next generation if not for us. May the Clinical Trial Gods be with you.
awww happy belated halloween. did you get some good treats? my son brought home mostly kit kat bars.
i am a big chicken too. i do think you are one brave woman. i didn't know about the adverse side effects...i want to read more about those.
wanted to personally thank you for coming to read and comment me and also...
just wanted to let you know that our beloved diane standiford has a wonderful interview up on health central. come check it out!
http://www.healthcentral.com/multiple-sclerosis/c/73302/46335/people
There is SO much fodder here for comment! I mean, I could START with the hairy-leg phenomenon and just wind my way down to the speed dial issue, but that would take to long and probably not be NEARLY as funny as your posts/writing!
Thanks for tickling my funny bone so...
Linda D. in Seattle
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