After Psycho I spent some time getting all of my health issues sorted. I took a bit more control over things myself rather than just do whatever doctors prescribed. Now don’t get me wrong, I’m totally in admiration for doctors, surgeons and nurses, I was one myself, and believe what medicine can do today is quite unbelievably good. However, health and disease are often very individual and everybody is unique.
The medical profession has to work on the masses, it also then has to cover the unusual or rare individual types which is extremely difficult to do for the billions. So, if you have a treatment protocol or drug that works, for let’s say 80% of the population, it would certainly be deemed a great success. However, what do the other 20% do if they have that particular issue. It’s the same with drugs. A pharmaceutical company has to invest millions in research to come up with new treatments for specific diseases. To make it successful and even profitable they will choose diseases that affect a lot of the population but not ones that are rare. The rare diseases and health issues tend to rely more on charity or disease specific organizations to raise money to pay for any research. In the wider general scheme of things, this makes sense. Yet, I do know, it can maybe feel a bit unfair if you suffer from a serious rare disease rather than having something more common.
So, in my case, WM and my type of diabetes are not common. Joint and aging issues are normal along with some caused by previous life choices, training and endurance bike riding. I decided that quality of life matters to me far more to me than longevity. Though I do hope to have as many years ahead of me as possible, as I do truly love life’s adventures and journey, always have. So, I make this clear with any of the medical professionals I have from the start. I don’t want to take drugs that make me feel worse now for a possible little extra time later. If treatments make me feel better now, I am all in. I’m lucky to have been a nurse, so do have some knowledge to help me decide and control my healthcare to some degree. For anyone else it might be far more difficult to get the balance you want between your own medical professional advice, media medical information and personal feelings. It’s easy to do just what your told to without question or question everything you are told; both can be good or bad.
So, I talk a lot to my lymphoma team at the Mayo Clinic, they understand everything about the disease better than I or the internet could ever possibly know. My diabetes is a bit more personal and I am again trying to have a more individual relationship with an endocrinologist focusing on what works or doesn’t for me. The usual medical protocol of drugs doesn’t work for me and didn’t for my mother, Uncle, brother and now me. Hereditary health issues can sometimes but not always help you understand your own health.
Nutrition and weight management are up to me and again there is way too much advice around to know what to do exactly. So, I feel I should look and sometimes try the odd thing but more importantly take an interest in what I eat, how do I feel and what impact things have on weight, blood sugars and feelings. I am lucky having a friend who is not only a great nutritionist, but also works with top endurance athletes. Jill Mooney at BarrUltra is a wealth of knowledge to me and we are trying to understand how my body works with all its issues. We are getting there, but it’s a process of trial and error then repeat until we see improvements in energy and weight.
So, with all this said, I think I’m slowly becoming healthier and fitter. Probably waiting until you’re in your 6O’s to do this wasn’t one of my best ideas, but better late than never.
