This will most likely be my final post on this blog, mainly due to lack of interest (my own). I started this blog last December. Christmas Eve if I remember correctly. I was frustrated beyond belief. Nothing was going well. I really didn’t think my son would live to see high school graduation. I was frustrated with my job. I was frustrated with all of the problems caused by my sons school. Most of all I was frustrated that the one piece of technology that could really make a difference for me and my son was being dangled like a carrot by the wonderful diabetes team at Kaiser.
Chris was only 7 when I first noticed that there was a bull in the field. His mom and I had recently split up. He was diagnosed with diabetes 2 days before his 8th birthday. I was an apprentice electrician working full time and going to night school twice a week. I couldn’t imagine life getting any worse.
Over the last 7 and a half years, I have talked to so many doctors, nurses, nutritionists, counselors, therapists, and specialists about his diabetes. Some of them were polite, others yelled, most of them gave advice that conflicted with the rest of them. Chris’s A1C was getting higher and higher. I was reading everything I could about diabetes. I participated in message board communities. I read all about the latest research. I talked to anybody that I could. I was determined to become an expert in diabetes. The bull was restless, and I was in the field.
About 5 or 6 years ago, when Chris was 9 or 10, I realized that he would do better with an insulin pump. I asked the doctor and nurse educator about it. They agreed that Chris would be a good candidate for the pump. He just had to get his blood sugar under control first. That didn’t make a lot of sense to me, but they are the experts, so I let it go. Obviously I was not ready to face the bull. I did my best to stay on the far side of the field.
The next 4 years were very stressful. The harder I tried to control his blood sugar, the worse it got. Ketones became a regular thing. He was sick almost as many days as he was well during his 7th and 8th grade years. I couldn’t make all of his doctors appointments because I was barely able to hold a job due to all of the work I had to miss. The appointments were a waste of time anyway. A typical appointment was us going in and hearing what a lousy job we were doing and that he would never get to have a pump if he didn’t start trying a little harder. The bull was snorting and clawing at the ground.
The bull finally charged at me at the end of his 8th grade year. I was called in to a meeting at the school to decide what to do with Chris. They wanted to hold him back. Although I was required to be there, I never had any say. I was strongly against holding him back while his friends went on to high school. They disagreed with me and held him back anyway. During the summer, I appealed their decision with the Associate Superintendent. I will call him Ass for short. Ass said that it was George Bush’s fault because of his “no child left behind” policy and if I didn’t like it I shouldn’t vote republican. Based on his star testing scores they did not think 4 years was enough to prepare for the high school exit exam. He had severe highs and lows during the testing, and it is likely that he was unable to concentrate. This didn’t matter to Ass though. The bull not only charged, but he ran me over that summer.
Around the same time, a co-worker of mine became foreman on my job. I am not going to go into the reasons why, but I can tell you it is not because of his quality of work or his knowledge of running a crew. This guy who I previously got along well with could not handle the position of power. It went to his head and he became unbearable to work with. The bull had run me down again.
At this very same time, Chris’s doctor/endo/cde/social worker insisted that the reason Chris couldn’t get his blood sugar under control was either that he was ADHD, or on drugs. Of course I knew better, but I was not about to play their game by having him tested for ADD. That test is based entirely on opinion and has no medical backing at all. They promised us an insulin pump at every meeting. Finally the day came where they told us they would order the pump at the next meeting. The next meeting came and I asked about the pump. She told me “Oh NO, he won’t get a pump for a long time. The bull had not only run me down, but stomped on me and jabbed a horn into my side. Enough was enough.
That was the straw that broke the camels back. I totally lost it. The bull had gotten the best of me and I could no longer function. I quit my job. I fired Chris’s entire medical team. I started looking into private schools and home schools. I got up and grabbed the bull by the horns with both hands.
The bull did not like that. He started throwing his head around. I was tossed around like a rag doll, but still I hung on with all my strength. I had just refinanced my house and had been doing fairly well with the stock market. 2 weeks went by and the bull was still jumping. We got a new medical team at a different Kaiser hospital. I started talking to Gary Scheiner, a very well respected CDE and author of a diabetes book. I hired an attorney to deal with the school. Not only had I hung on, but now I was starting to gain control of the situation. I had the bull by the horns, and I was the one throwing his head back and forth. He continued to resist, but I did not back down. The school called the paramedics when Chris had a stomach ache because they were retaliating for me bringing in an attorney and making their lives difficult.
The attorney forced the school to put Chris under an IEP. This is a form of special education that gives him more rights than a 504 plan. The IEP required psychological testing, which determined that Chris was severely depressed. The depression was not caused by diabetes, but by being held back in 8th grade while his friends went on to high school. The results were that Chris was moved to High School with only a little more than 1 quarter left of the school year. It was not fair to do that to him so late in the year, but better late than never I guess. I was now on top of the bull, riding on his back. My hands still clenched tightly around his horns.
A dietitian/cde who works in Gary’s office called Kaiser and told them that Chris should have a pump. They finally gave in last May. I spent the summer taking classes in real estate and stock investing. I did exceptionally well in the stock market up to that point. I was drawing out enough money to live off of each month. The bull had been tamed. He had given up. I walked him into his corral.
The expenses finally caught up with me, and I used up all of the money from refinancing and investing. so I eventually had to go back to work. Besides that my medical benefits had run out and I needed to go back to work to get them going again. Chris spent a lot of time this summer with the Diabetic Youth Foundation at summer camp and climbing Mt. Whitney with a bunch of other diabetic kids his age. His attitude is much better, he rarely gets ketones anymore, he looks healthy. I wiped my hands on my jeans and walked away from the bull pen.
My story is done. I started this blog as a way to share my frustrations. I am no longer frustrated. Life is good again. I am not working at this time. I decided to try my luck at real estate investing. I just purchased a house that I intend to fix and sell. Hopefully the beginning of a new career, but only time will tell.
It is unlikely that I will post here again. I had to block most of the
comments coming in because they were spammers trying to advertise porn sites. I may post on the Diabetes Talkfest Blog from time to time if I think of something to blog about. Blogging is not really my thing anyway. I am more of a message board kind of guy. You can read my posts at www.diabetestalkfest.com/forum.
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