What About The Others?

It’s already February 1st and, more importantly, the day before my birthday.  We spent one heck of a long weekend gallivanting around the area in early celebration. There was the 1907 elementary school bed & breakfast where we stayed and met some interesting people: a paranormal phenomena discovery team from South Carolina, a duo from California scouting locations for dispensaries for medical marijuana and a woman writing a book about bed and breakfasts.

The home made breakfast was incredible, but I was able to be really careful about food units and calories – something I hadn’t been at the Mom & Pop Mexican restaurant where we’d had dinner the night before.  That was when I made use of the “avoid or limit” categories of the renal diet.

We even managed to get in exercise: a mile and a half trail walk at the Boyce Thompson Arboretum in Superior, a defunct mining town that’s coming back as an artist colony.  I’d tell you ALL about the weekend, but this is a blog about chronic kidney disease.

During our tour of Besh-Ba-Gowah, Native American ruins in Globe, I got to ruminating about when I was first diagnosed. Don’t ask me why; maybe because it was another sort of history and I realized that once I recovered from my initial shock at my diagnosis and then the fear of dialysis, I started talking, and talking, and talking.  While this might not be an unusual occurrence for me (alas), all I talked about now was CKD.  I waited for someone to ask a question about it, then I pounced setting forth volumes for what required a simple, one sentence explanation.  But, basically, people were not really asking me about the illness at all.

They were asking what they, as friends and family, could do to help someone in the early stages of CKD.  With all my researching and writing, I thought I didn’t really need any more help, so I asked my own friends and family what they thought I needed.  While some of the answers were predictable, some were not.

My chosen sister advised me that people need to be told that they have to be patient while I order in restaurants.  I pour over the menu looking for acceptable foods prepared in the ways I can eat them.  Then I ask a myriad of questions about how many ounces, how many calories, what ingredients are not listed on the menu (beware of Coco’s which seems to have a surprising number of unlisted ingredients) and how many calories.  I usually spend time asking about substitutions of acceptable foods for unacceptable ones in a meal.  While I apologize to the waiter or waitress in advance for all the questions, it had never occurred to me that I ought to be apologizing to my dinner companions, too.

My partner thinks that the weighing and measuring of food should be explained. He doesn’t really care why I need to do it, but he does want to be sure he can help figure out how much of what I can have at a meal or a snack.  Since he does the majority of the cooking at our house, he knows to do the weighing measuring after the food is cooked.  Sometimes, he’s tired from working all day, but has the patience to wait for me to do the weighing and measuring before we sit down to eat. It takes time and we like to eat when the food is hot.  In addition, since I’m so restricted in the amounts I can eat, he shares a meal with me when we go out.  By the way, he has lost 50 pounds being helpful to me since I have been diagnosed.

On another note, I’ve been thinking about my signature which just plain didn’t feel right (close, but not exactly on the mark), so I’m changing it from “Keep loving your life,” which feels sort of intrusive to me, to “Keep living your life.”  I don’t know that I exactly love my life on the bad days, but I do know that I intend to keep living it as long as I possibly can – and hope you feel the same about yours.  So, until Friday:

Keep living your life.

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Published in: on February 1, 2011 at 8:47 am  Leave a Comment  

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