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So, as always, time moved on and for the most part the disease was pretty stable for about a year and a half. I was able to continue full time work and live a fairly normal life. The biggest problem that I found was that I was always tired and had no energy. I had no problem sleeping 10 – 12 hours per night. It was also in this time that it was becoming increasingly difficult for me to find the energy to do certain things. For the majority of my life I have always been single and really didn’t have anyone else to answer to. When a person lives that way they inevitably become very self sufficient and learn to do things for themselves. I was that person! I was Mr. Independent. Sure I had friends and stuff but at the end of the day when I walked through that door there were only three of us…me, myself and I. As my disease deteriorated I eventually had to dispose of my “Mr. Independent” attitude and begin to let people in to help. This happened in a variety of ways, sometimes physically, sometimes financially. The reality was I couldn’t do it alone anymore. To be honest that wasn’t such a bad thing because I eventually let friends and family in to help. I still have my independence however I have learned how important it is to let people in to help and that it isn’t such a bad thing after all. I have a pretty thick head and the disease was just the opportunity that God needed to teach me a valuable life lesson, one that I am thoroughly grateful for!
Let’s jump forward to the spring of 2004…
In early spring of 2004 I was still fairly healthy, but I felt that working rotating shift work was putting too much of a strain on my body. An opportunity presented itself that would allow me to work one shift instead of rotating nights and days. It was a straight night shift which is a lousy shift, however I felt that at the time it would be easier on my body over the long run then flip flopping back and forth. Around the same time I also began to notice some changes in my body, specifically that I was beginning to retain water in my legs and feet. It got to the point where I was pretty much only able to wear one pair of shoes for everything. Aside from the minor change in the disease, it seemed that things were still fairly stable. That stability was short lived because August came around and my body decided to take a giant leap downhill, actually it was more like over a cliff. From this point forward there was a significant change in my body and also the disease. We’ll get back to that shortly.
Throughout the entire disease I was able to function fairly normal for the most part. I remember another issue that really wreaked havoc was the fact that I was always cold. In June 2004 a small group of us decided to ride down to New Hampshire for Laconia Bike Week and to help out at an outreach called “The Tent”. You never know what you are going to get weather wise during June in New Hampshire but this year was actually quite warm, basically for the entire week. I was always cold during this trip though. There were times that we would be riding through mountains and the guys would all be wearing t-shirts. I was wearing a t-shirt too…although you couldn’t see it because it was covered with a turtle neck, a jean shirt, a sweater, a leather coat, a vest, winter gloves and something to keep my neck warm! No matter what I did I couldn’t warm up.
Back to the August story. Around mid – August of that year, I was camping with my brother and his family on Lake Erie and felt “off” the entire time. My appetite was lousy or more so than usual, and I was extremely tired all the time, again more so than usual. I camped with my brother and his family for a few days and then moved on to Port Dover for the Friday the 13th biker event. I camped out the remainder of the week at a campground called Triple C just outside Port Dover and was extremely tired and didn’t feel too good at all for the remainder of the week. The day of Friday the 13th I slept in till around 1 PM or so and then went in to Port Dover. I was so tired that I was able to walk around for maybe an hour and then ended up sleeping in a friend’s truck for the remainder of the afternoon. Little did I know that there were some serious issues with my body at the time. I remember before leaving the campground on the Sunday after Friday the 13th, a group of Christian friends prayed for me before I left.
I went back to work on Monday but was extremely tired and figured it was because I was on holidays for the week previous and was always on the go. You know how it is; you need a holiday after your holiday in order to recuperate! Nevertheless, as the week progressed I found it difficult to get up every day even though I didn’t start work until 10 AM. By the time Thursday came around I was so tired that I actually ended up going into work 3 hours late. I did my job for about an hour and then ended up going to the kitchen and fell asleep for about 3 hours. Someone finally and woke me up around 5 PM and told me I should go home because I didn’t look well…boy that was an understatement. So I drove home in rush hour traffic, and when I arrived home, went to bed. I remember waking up on Friday, looking in the mirror and noticing that my eyes were the whitest I had ever seen them, which was odd because they usually had a yellow tinge to them from the illness. I also noticed some other issues going on that I won’t mention here! I called a 24hr nurse service and talked to them about the issues that were going on and they suggested that I go to the hospital. They didn’t tell me to call an ambulance…which I probably should have done, so I drove myself. I only lived 10 minutes away anyway.
I went to the emergency room where they ended up doing some tests, including the usual blood work. They found out that I was somehow bleeding internally and my hemoglobin was extremely low. Now I don’t talk about medical terminology too often however I need to mention it here. Many people are not aware of what hemoglobin is or what a healthy range is in a normal person. The range is somewhere between 110 – 155 or so depending on what scale you use. When I went to the hospital my hemoglobin was 65! Remember this for later on in the story. They figured that I was bleeding from my esophagus which was common for the disease that I had. Apparently I had lost a significant amount of blood, enough that my specialist came in at 1am to perform a procedure to stop the bleeding. There was a good chance that if I hadn’t gone to the hospital that weekend that I may have just went to sleep and not woken up. But once again, by the grace of God he was watching over me. When I look back now I see that there were a number of times that I was close to death and didn’t realize it at the time.