Oh my GOD, it was hell. My parents rented a Marriott Residence Inn for me. They were doing a double blind of this unknown KYP medication. I had to be on it with my other medication. That right there is a cocktail for a disaster.
This was a drug trial that was done at Johns Hopkins in Baltimore. They came in weekly blister packs and I was given a very simple method of keeping track of my seizures.
It was an “A to C” system. A, being a certain type of seizure and C the worst of my seizures A.K.A generalized, fall back smack my head off something and be disoriented for 20 to 30 minutes after. Sometimes I forgot to record those due to my disoriented nature.
We stayed in the Residence Inn because it was more of a very, very small condo
Marriott created these places for business people who had to stay somewhere for a month at a time.
My mom stayed with me for a month or so. I block some of it out, because it was such a terrible experience.
So I went on an unknown dosage of medication right away. It was ok in the beginning, but as weeks turned to months I just got more groggy and doped up. My speech was slurred.
After my mom left I had a television, but they removed the movie channels, so if a movie was on, I had to watch it at six pm or I would miss it.
Do you remember the movie “Live, Die, Repeat? Well I certainly repeated enough times to recite the movie. It came on right as I was making my dinner.
I don’t do regular television, it is boring for me and it doesn’t take up enough time in the night to make it to bedtime. I know it probably, well not probably, most definitely not a good thing to drink wine when I was on a trial, but I was so alone and tried of keeping this stupid schedule. My study took me into the winter there.
Baltimore is called the “Armpit of Maryland” I kid you not. Almost everywhere was dangerous. I remember being there just before my surgery and it had the highest crime rate per capita in all of the United States. Now Baltimore is not a big city compared to others, but that news was very pleasant to hear.
Honestly I don’t know how to be sarcastic as I write. Of course it was not pleasant at all. It was down right scary as shit!!!
(Anyway I will cover that when I cover my second surgery)
Back to me staying at the Residence Inn. After my mom left a couple nights later I hear two bangs, but nothing after that. I didn’t want to worry or investigate it at all. I went outside for my morning smoke. The Baltimore police were taping off the Seven Eleven right across the street. What I found out later is that I was just inside the downtown core and it was a very dangerous area. It was probably nicer back when the city wasn’t as violent. Well, that put an end to my wondering around pretty quickly.
We organized a caregiver, not that I “needed” one but more for company. It was like hiring a companion, but without the perks.
She did have a car so we went places. She was a very nice girl and we enjoyed our time, minus the perks.
I think I must have stayed a total of six to eight months, from hell. I had a bitch of a researcher. She was so cold and unfriendly. I can get away with calling her a bitch, because only five people now who I am talking about.
One night at the residence my insides decided not to co-operate, so it rejected everything inside me. I was severely overdosing. I ran to the washroom and threw up. Then I had the shits, “well isn’t that great” have the shit and now and on top of that, I have to throw up again. I aimed for the tub beside me and missed. Your are probably thinking this section is really gross and yes it is, but I am sure some of you have had this happen! Nonetheless I had the maids clean it. I apologized profusely telling them the reason.
GOING HOME AND BACK
After all this crappy insistent (no pun intended) I went home, but had to go back and give them the Bister packs every month it that was a trip and a half. At that time Air Canada was running propeller planes and the seats would barely fit me. The flight attendant went around and asked some people to move to balance out the plane. Well that gave me a lot of confidence, yeah right! Georgian Air purchased them and turned them into jet-propelled planes, which eliminated the need to balance out the place. I am thinking it is because they are more powerful!
At the end of one trial visit the bitch of a nurse asked us the stupidest question. “We ran out of his trial drug, do you mind returning next week”
WTF are you on crack, duh we live in Canada) It is a 700.00$ ticket and a hour and a half plane ride, or a nine hour drive.
The female dog (A.K.A bitch) was telling my mom this and she was probably thinking the same thing. I think she threatened to drop the study if she didn’t get them by tomorrow morning. My mom had to rush to Johns Hopkins and get a blister pack for one month. The research nurse was a total pain in the ass.
We did get the month’s worth of the blister pack the day we were head back home to Toronto.