I Become Even More Frightened

You know, there are organizations (see the blogroll on the right hand side of the page) which can offer us support. Being no fool (or so I thought at the time), I immediately contacted the American Association of Kidney Patients asking that they send me whatever they had.  And they did. And I started quaking in my boots again. 

Being the wonderfully informative – even if I wasn’t ready to accept or even understand the material – organization that they are, they sent me pamphlet after pamphlet: “Kidney Beginnings: A Patient’s Guide to Living with Reduced Kidney Function,”  “ When Your Loved One is Depressed,”  “Understanding Depression in Kidney Disease,” (two on depression?  Did that mean I was bound to become depressed because I had CKD?), “Understanding Anemia in Kidney Disease,” and “Understanding High Phosphorus and Your Treatment Options.” I haven’t even included the ones about dialysis or transplantation options.

I later learned that depression may be a part of the stress of becoming a CKD patient.  Overnight, you become a special person with special needs.  I asked so many questions of my nephrologist that he feared this was what was happening to me.  It wasn’t, but it seems it could have been. 

You have to think about everything: how much of each kind of food, which foods at all, over the counter medications, exercises, sometimes even integrating rest periods into your day.  There are the constantly changing vitamins and minerals; you need to stay in balance and that can change every time you read the results of your blood and urine tests.  Maybe you need more vitamin D this quarter or less calcium.  It’s so individual.  Sometimes, this depression can be caused by something as simple as not being about to admit you are overwhelmed and need help.  You need to relearn that you are more than this disease.  

The steps to accepting this diagnose reminded me of those dealing with death.  The first is shock.  Yes, that was me.  I was dumbfounded.  Then there’s grief.  I think I may have skipped this step by researching instead.  After that, there is usually denial, but again, I was so quick to research that I found myself not grieving, but dreading what I thought was going to be imminent dialysis. 

I remembered reading somewhere that denial does have a purpose as long as it is not never-ending. It helps you cope with this news until you can deal with it.  Just be sure you don’t use denial as a reason for non-compliance with your nephrologist’s and nutritionalist’s directions. It was the research that led me into acceptance.  This was my life and I would learn to adapt to it because I didn’t like the alternative.

It took me about year to pick up these pamphlets again after initially reading them. They do not go into that much depth, are obviously meant to be helpful, and are gentle introductions to the topics.  But I still wasn’t ready.  I put them away and ignored them until I decided to write this book.  Then I looked at them a third time – and still felt the dread that this was going to be my future. For all the information available to me about my disease and all these educational booklets, I couldn’t help thinking that depression and dialysis or transplantation were going to be my immediate future.

I was an optimist by nature; why all the pessimism? I believed in learning everything I could about anything that affected my life; why the rigid attempt to shut this out?  I had a mental image of a large hand being held up in the universal “STOP” mode in front of this information.  Maybe I needed a less official approach.  After all, the American Association of Kidney Patients calls itself “The Voice of All Kidney Patients,” and I had never been a joiner.

I’ll tell you the other avenues I tried next week.  Enjoy the weekend!

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Published in: on October 15, 2010 at 1:35 pm  Comments (2)  

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2 CommentsLeave a comment

  1. Maybe you were going through some of the stages, although by getting so involved with the research you were focusing your fears in that direction. It still has to be scary, and it is still must be very hard to accept it.

  2. Actually, the more I learned, the less scared I became. That’s the idea behind the book this blog is based upon: the more you know, the less you fear. I really don’t like the thought of other new CKD patients going through the same gut wrenching fear I did. I still don’t like the idea of dialysis, even if it is 20 years from now, but I’m not afraid of it anymore.


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