You've got what it takes but it'll take everything you've got

Have you searched for a chronic illness blog lately? Here I thought I was so unique and individual but when I did a Google search today, I came up with 356,798 using the key words “chronic illness blog”. Yikes! That’s a lot of sick people. So much so, that you can even purchase an “Ask me about my illness” or a “Don’t look sick, do I?” T-shirt. I felt so out of the loop. After taking a few minutes to feel sorry for myself in the face of a seemingly significant lack of creativity, I did spot a difference between my writing and much of what is out there in the chronic illness blogosphere.

Most chronic illness blogs are designed to:

1.       Help people who are newly diagnosed with a chronic condition

2.      Help people manage an illness developed after adolescence

3.      Support for parents of children with a chronic illness

So what happens when that child becomes an adult? And then that adult has not only a chronic illness but other health issues as well. Why had I not realized the situation I was in? Because two-thirds of my life has been lived with “just” being a Type 1 diabetic. Prescriptions, injections, numerous physicians have been such a part of my life that I’ve never realize it was something both outside of the norm and therefore worthy of making a statement. It wasn’t until I couldn’t function like everyone else that I realized something was different.

An example of something routine for me but realize is not for everyone else:

Before I eat dinner, I check my blood glucose level. Based on what that number is and the number of carbohydrates I will be consuming in that meal, I will program my insulin pump to dispense the appropriate dose of medication. But let’s say that I don’t eat as much pasta as I had thought I would. I check my blood glucose level before going to bed and it seems close to normal, maybe a little lower than normal but close enough not to be concerned and I fall asleep. Later, perhaps three hours or so, I become semi-conscious – my thoughts are spinning through my head I can’t catch the tail of any one thought. I’m clammy with sweat and occasionally, I have hallucinations (I think my son is in the room but he’s not, the dog is outside howling but there is no noise). Add to these symptoms the fact that I can barely stand and I can hardly see – the color is gone from my vision and I can see vague outlines of familiar objects. Here is the hard part – I know I need to eat immediately but I’ve lost all ability to concentrate. My thoughts are racing after each other in one constant buzz - Ihaveto gotto eatgottoeathavetoeatnowsomethinghelphelpfoodneedtoeat. The lack of glucose in my system is now stressing all my major organs and my body is shutting down to protect itself.

Sound a tad harrowing? It is when I think about it, but it has happened to me so many times in the last 30 years that it doesn’t seem abnormal nor, frankly, does it even seem unusual. Here is the oft repeated resolution to my low blood glucose:

When I was single, I reached over to my bedside table and drank the juice box that I placed there just for that reason. With some glucose in my system, I could then function enough to get to the kitchen if I needed something else. Now that I’m married, I will wake my husband who will help me check how low my blood glucose is and will help me with drinking the juice or making a peanut butter sandwich with a glass of milk. By the time my blood glucose has stabilized, I’m sweated, exhausted and drained of energy. And then about three hours later, I get up and go about my day.  

I’ve never taken a sick day because I had a bad “low reactions” as they are called. No one I consider a friend or member of my family has ever commented on the blood-letting ritual I perform before every meal. I certainly was never allowed to miss school, skip homework, or simply not do something because I was reacting to my Type 1 condition. I love that my family and friends did this for me.

I recently met with Dr. Swedish, my coordinating transplant surgeon. In preparation for my eventual kidney transplant,  she asked a series of questions about my life. Married? Yes. Kids? One. Job? International Software Project Management. Volunteer? Yes. How often? Weekly.  Spouse's work? Software Development and Testing. Pets? Yes. Kind? Big dog. Travel? Whenever possible.

After writing all this information down she looked at me with a smile and said, “You really thought you could do it all didn’t you?” I gave her a look with arched eyebrow and said “Yeeeessss… “. She laughed kindly and said that 90% of her patients hadn’t done half of what I’d crammed into my lifetime thus far.

From the time I was diagnosed, I have had four friends who were my age and were Type 1 diabetics. Two of them are dead.  I realize that my life may be shorter than I want it to be – all the more reason to live it exactly the way I want to. I didn’t realize I was doing just that until I couldn’t anymore.