My Medical History


At the young age of just 18 I must have angered the gods. I was young, had just finished school and started university. I was naive, full of dreams and my aspirations for the future were limitless. In short I was ten foot tall and bullet proof. Then I made a horrible mistake. I said these ever-fateful words to a close family friend when he showed concern about me. "I am 18 years old, I am in perfect health. I exercise regularly and eat well. What could possibly go wrong?" Well, the gods didn't like it so one week later I had my first (of many) trips to the hospital.

I hear you ask, “Why did you need to go to hospital?”  I had a kidney stone. The first of three I had that year. I was diagnosed with a condition known as cystinuria, which means I have to battle kidney stones regularly. Sometimes I won, mostly I lost.

In the year 2000 things got worse when I was diagnosed with a condition known as Chronic Inflammatory Demyelinating Polyneuropathy. Wow, try saying that ten times in a row quickly. I will simply refer to it as CIDP.  It was a very stressful time.  It took an eternity to diagnose, and once diagnosed nobody knew what caused it although I have a few theories.

The kidney stones were still a big problem for me, and on top of that I now had CIDP a peripheral nerve disorder which left me with weakness and slowness in my arms and legs. At the time I was trying to lead a normal life, I was not accepting of my conditions and as a result I was bitter and resentful of the ailments I had been given.

Two years later it would get even worse when I was diagnosed with essential tremor (ET). Truth be known I had actually had the tremor for since I was about 15, but it had never really bothered me. I was always able to do the things I wanted to with the minimum of fuss, but that was now changing. I found it difficult to eat, drink and write. I felt this and the CIDP the worst because it was in your face 24/7. It could not be ignored, no matter how hard I tried.

Although other things in my life were going OK, medically, I was about to embark on five years of hell. I tried a variety of treatments for CIDP and ET with limited or no success. In 2006 I had complications from kidney surgery. I was laid up in hospital for 3 weeks and over three months I had seven operations. It was the worst time of my life, but also it was turning point for me.

When it was all over I started seeing a psychologist who diagnosed me with depression, probably caused by all I had been through. I realized that I could no longer refuse to accept my conditions, and instead I decided to take charge. I learnt about the conditions and treatment options and where applicable I changed doctors or even found some new ones. For example I now consult with two neurologists and two urologists, not one. I also changed my nephrologist (Kidney specialist) completely.


I also took time to work on my mental health and let myself know that what I had really did suck and it wasn’t fair. The validation of that point has really been a godsend for me. Now, I no longer live in denial about it all. I am not cured of my problems, but now I am accepting of my limitations and I am much more in control of my conditions.

In 2010 I took the first step forward in really being proactive about tackling my health problems.  A while ago one of my neurologists had mentioned the idea of having Deep Brain Stimulation (DBS) surgery in order to arrest the tremor.  At the time I thought I'd have to have rocks in my head to consider DBS, so I dismissed the idea.

However, my decision to be proactive about my health put the idea front and centre back in the spot light, and a year and a half ago I had the surgery.  There were times when I questioned the idea, but after a year and a half I can say it has definitely been worth it.

My next big leap will hopefully be next year when I try to get myself involved in a CIDP trial in Chicago, involving an autologous stem cell transplant.  Touch wood I will be accepted into the trial and all will go well.  Stay well:)

3 comments:

  1. Please tell your wife to post once in a while! I would love to hear how she has handled the extreme issues you have gone through. My husband is having a hard time, post-stroke, and I try to pay attention to his feelings and needs as much as possible. However, I would be interested to hear how your wife stays positive while enduring all that you've gone through. Or maybe she could email me! Thanks for sharing!

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  2. Thanks Jen.

    I showed my wife your comment, and although she was flattered by it, she is a fiercely private person (unlike me) and as a result she has respectfully declined. However, I did ask how she copes and she answered "You just do". I guess what she meant by that is you learn to adapt as time goes by.

    From my point of view there is one main difference between your case and ours, and that is ours happened gradually, where as your husbands stroke happened suddenly. I can only imagine what this would have done for your mental state. The worry, uncertainty, and I'm sure there would have been some loneliness too.

    But do not despair! You have been through the worst of it. As my condition slowly degenerates, my wife and I have the benefit of time to figure out the next step. It all happened for you in one big cataclysmic moment, and as time goes by, you will both get better in learning how to deal with each situation as it arises.

    I have read your blog. I think you are an amazingly strong person. Keep positive and good things will happen. Stay well:)

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  3. I found a bunch of good articles on this subject here. Thanks!

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