Watching the Wheels…

Watching the wheels churn, which applies figuratively to many things in life. There is the daily grind, the wheel of health, the wheel of public policy, and so on. For those of us with chronic diseases, we have our own “wheel” and this is imbedded in the health care system. Due to the fact that many  diseases need constant monitoring can make you feel like your forever seeing Drs, RNs, dieticians, more Drs and having more and more tests. When you have CKD like myself, there are so many things they want to keep track of: creatinine levels, blood counts/anemia, bone health, Magnesium, calcium levels, phosphates, albumin in blood and urine, plus the numerous special testing they need to do to judge your antibody levels in the transplant work up just to name a few. Then, if you’re real lucky, you will have other diseases that compound this process which necessitates more medications, adjustments, more testing, more treatments which then spits you into a new regime of follow up. It just seem endless!

I remember looking at my calendar one month and I think EVERY day off I had from work I was seeing different Drs, having blood work, or having a treatment in hospital. No wonder I was ready to jump off that wheel of wonderful and have a little “down time”. Crazy! It also made me think of my Dad: he was a minister in the United Church. As a kid, I remember one day walking by and looking at his appointment book. I don’t remember any empty spaces in it for an entire month!! It makes me think of how we just trundle along, doing what we do, not really thinking about the big picture. For me, during the rough patches, I would have to just go one day at a time for to look beyond that, was just too overwhelming. You start to micro-manage and compartmentalize your life.

I just watched a movie trailer called “The Abundance Factor”. The movie brought to light many truths about the lives we chose and what power really do have. The main theme appeared to be that life is what you make it, starting with what you say to yourself every day! So its all in your head!! I’ve always said that attitude is the thing in life that will either serve you well or not. The movie also pointed out that maybe the “norm” is not for you (they talked about the societal belief that you went to school, got high marks so you could get a good job, make good money, etc, etc) and that maybe your happiness doesn’t lie in working yourself and stressing about things that don’t make you happy. This of course doesn’t mean you should caution to the wind and abandon reasonable choices. Living with CKD (as others with other diseases) forces you to come to terms with what you really want out of your life: what is important to you. Some of us still take a while to see this…I was that generation that had it pounded into them that success and happiness are linked. Happiness and success was about achieving status, financial security (actually more than that: it wasn’t enough to be secure, but be very comfortable). Yes, it is important to have some of these means to ensure health, but as I progress in age, diseases, and hopefully wisdom, these things are not so important. That wheel of happiness is not all its cracked up to be. I’ve missed out on sleep, time with family and friends, being able to pursue hobbies like I would like, and develop more of ME.

Being in the CKD wheel also makes you want to stop the madness even if its just for a week. How fantastic it would be to go through a day with NO PILLS to take, no needle pokes, to get a full night’s sleep without stressing that you’re getting enough sleep so you will be on your game the next day at work. Extend that out to a week or even better, a month!!! What a holiday that would be. Recently, there was a change in the amount of protein that I leak through the kidneys so I had to change one of my medication doses (increase) and with that was the request to repeat my labs in a week…Yeah, that didn’t happen. First of all, “repeating my labs” means 3 tubes of blood and urine again for the umpteenth time…for what?? It is a waste of my blood, time, and the dollars  in healthcare to process all the other blood work on there that doesn’t need to be repeated. If they are concerned that I might lose too much potassium, well, I know what that feels like so would just eat a banana or orange or two. No this isn’t optimal and certainly NOT what I would advise a patient, but this is me. I will do the labs, but not for a couple more weeks when I go back to see nephrology in follow up. I just get tired of having to schedule my time and life around lab appointments, work, fun, Dr visits, etc.  I just want to be normal and live the good life!

self portrait one

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