Not feeling too bad. Paula is here beside me. She makes me feel happy. Wow, this bottle of pills is so large and this is to last me for only a month. The first two weeks went by. Not feeling so good. Sick a lot! Why? I don’t understand. These pills are supposed to make me feel better. I found it hard to stay awake for the rest of Christmas. This will be my last one.
I stopped working and we moved in with Edna. We became very close. It was good to feel like I had a family around to give me strength. I don’t feel good. Why are these drugs not making me feel better yet? Must sleep! All I wanted to do was sleep. The days were spent in and out of bed. It was so hard to adjust. I wanted to do things, wanted to be a part of living, not a part of dying. Must get out of bed and try to do something. No. The thought was good but the strength was not there. Was this how it was going to be? Only awake and alert two to three hours a day?
Edna and my partner were great about taking care of me. I am sure it was not easy to see me fail, in front of their eyes. I was becoming aware that when I had my good hours, I needed to make the most of them. I started to work in the garden. This was good. It felt good, when I was in the garden. The soil was so rich and the strength I could feel from Mother Nature was real.
Oh, my body tells me it is time to sleep. Back to bed and rest. My life became very dark and my spirits were poor. I wanted to die.
NEW OUTLOOK
The year is 1992. It was spent in much the same way: sleep and more sleep. How long was this going to last? I am taking 500 mg of AZT a day, so things should soon turn around and I will feel better. I decided to go home. Must go home! I was told to get my affairs in order. Wow! This must be it. Must go home! I needed my family at this point. I moved home to Prince Edward Island and stayed six months. It was not working out. There was not enough knowledge about HIV or treatments there. I must go back to Ontario for my treatments.
I went back to Guelph. I must search out for myself, what is going on. I went to the AIDS Committee of Guelph and Wellington County. It was hard to walk into the office and admit I needed help. I was very accepted and made to feel it was OK and there were more people on the same walk as I was on. At this time, I met Garry Spears, who later became a special friend and a close soul mate.
My feelings on finding out about my own information on treatments started to come to the forefront. There were so many medications and trials and no one was really sure of the end results. Would I be part of a study or should I take the chance? Would I try drugs to see what strange things could happen for other people? Yes, I must. Let’s try something called “combination therapy”. Let’s see how the AIDS fighting drugs will work, when we put them together to try to kill this thing called AIDS. Yes, this must be the answer. I will try it.
At this time, I was about to meet one of the key players, who would help me on my walk with AIDS. Her name was Dr. Anne-Marie Zajdlik. It became very clear to me that she was interested in working with me and she became one of my primary caregivers in my fight. She made me feel it was OK. The girls, who work in the office, were also very helpful and I was happy that I found a place I could feel cared for and safe.
Now, I needed a good drugstore with someone, who was interested and willing to work with me and the doctor. This is when I met Tim at Prescription Place. It was clear that these people were interested in my fight with HIV. I wanted to fight as long as I could. Dr. Maurice Genereux, a Toronto physician came into my life at this time. Things were looking good. I was at peace because I had doctors, who were going to do everything that was possible to help me along this path of treatment.
I needed help and soon. I felt the AIDS virus was taking over my insides and I was losing the battle. We tried combination drug treatments. So many drugs to take and to try to keep them all in order! They also had to be taken, when they were meant to be taken. This must be the answer.
Then, things started to happen. My liver was not going to take it any longer. I went to see Maurice and Anne-Marie, after six months on this treatment. I had failed and the damage was real and made me very scared. My life became a matter of A-B-C. What should I do next? Just try to stay healthy. My blood work was not good and I could see myself beginning to fail. This was it. I was sure it was over.
THE KEEPER OF THE ZOO
A man named Terry Jackson was recommended to me to help me put my affairs in order. He was a wonderful help and made me feel that things would be done the way I wanted them to be. This all happened in 1993! According to my blood work, I should really have been dead. At this time, I began to call my sick insides “the zoo” and I saw myself as the “keeper” of the zoo.
In August, I decided to go home to Prince Edward Island (P.E.I.) to spend time with my family, while I still had enough strength. This was when I was very sick and messed up. I was experiencing some really strange feelings and I was unsure what was going on. My very close and special friend, Gloria was there with me. If she had not been by my side, I don't feel I would be here today to write about it and share my story.
I experienced many strange feelings of fear and loneliness. This was just before I returned to P.E.I. to see my family. I was suffering from symptoms of MAC (Mycobacterium avium complex) and I knew it could affect the lungs, intestines and spread throughout the body, infecting the blood, spleen, liver, bone marrow and lymph nodes. I felt I was being followed and that someone or something was out to get me. The morning that I got on the plane to go home, I was feeling very good. My mind must have been asleep still because the fear of being followed was not there. We were halfway to Toronto, when the feelings returned. I felt that someone was following me but I could not understand why. Later, I would find answers to this mystery but all I knew was how I felt. I got on the plane and I was on my way home.
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