Tuesday, May 16, 2017

The Blame Game - Diabetes Blog Week 2017

Blame is such a heavy word, and there is plenty to go around in the diabetes community.
Doctor blame patients for not being in "control." I have not experienced this with my doctor; he is great! But I read almost daily of someone whose doctor or cde has shamed them in some way for their management (or lack thereof, in the healthcare providers mind). Might this be why people give up? Maybe some grace and gentle guidance would be more effective than blame and shame?
Patients blame themselves for "mistakes."  We all make them. How could we not? Our pancreases don't make insulin, so every bite of food we eat must be calculated and matched with insulin. Food labels can be off as much as 20%. Glucose meters can be off as much as 20%. Activity, stress levels, illness, and many other things can affect glucose levels and insulin absorption. We make mistakes. We have to treat ourselves with kindness and grace, and move on.
Parents blame themselves when their child with diabetes has high or low numbers.  Imagine having a young child, perhaps young enough that they don't speak yet. Now imagine that you have to guess how much food that child will eat at EVERY meal and snack. If they don't eat it all, their blood sugar goes low. If they eat more, they need more insulin. It's a constant balancing act. Mistakes happen. Parents need to be kind to themselves as well. 
Parents also tend to blame themselves for passing on the genes that cause the disease. I know my mom even mentioned that when I was diagnosed with type 1 at age 45. I stopped her in her tracks....blame does no good.
Society blames us for our disease. This is a big one. Whether the patient has type 1 or 2, or any other variant, we are NOT to blame for our disease. There are strong genetic factors involved, and the experts don't even fully understand it.
One of the saddest and most infuriating cases of blame are when my fellow type 1 folks throw our type 2 friends under the bus. It's not right, and it's not fair. Like it or not, we are all in this diabetes game together. We must be kind to other. Without kindness and compassion, we start treating each other as less than human.

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The Cost of a Chronic Illness - Diabetes Blog Week 2017

Diabetes is an expensive disease. Even with insurance, we pay a substantial among each month in copays. I know many families struggle with the cost of insulin and supplies for 1 person with diabetes. We have 3 in our family. I've learned a few tricks to help us use our healthcare dollars as good as possible.
First, we fill everything on a 90 day cycle. This is about a 50% savings just on our insulin. On our particular insurance plan, when we get 90 day prescriptions for insulin, our test strips, lancets, and pen needles are included at no additional copay. I recently learned from another person on our insurance that alcohol wipes are also covered 100% when filled with the 90 day insulin prescriptions.
Next, our Dexcom sensors are filled every month. We could get them every 90 days and save a few dollars, but monthly works better for us. Storage would quickly become an issue, and that's already a big enough issue in our house. We extend our sensors as long as they are reliable, and that helps with the cost as well.
To me, the emotional costs can be greater than the financial costs. The constant drain of dealing with not only my own numbers and supplies, but also keeping up with my son and husband, can be exhausting. Don't get me wrong, they are both fully self-sufficient. But as wife and mom, I keep tabs. I don't micromanage or anything, but it's still on my mind frequently.
Another emotional aspect is how much I am surrounded by diabetes. At least once a week, it seems, someone messages me with concerns about their own child or the child of a friend. I absolutely would not want any of my friends to stop doing this!! But I do have to recognize the emotional drain it can put on me. I have to step back sometimes in order to keep myself in an ok place emotionally.
The physical cost can't be discounted either. My body is covered in tiny marks and bruises from all the injections I take daily.  I have a device attached to me 24/7. I would not want to be without it, but it does get in the way sometimes. My family has always referred to me as the princess and the pea. I've heard others say they don't even notice their Dexcom on their bodies, but I'm always aware of it. I wear it all the time and monitor myself closely in an effort to avoid the physical cost most of us don't like to thing about....complications. Even with tight management, being free of complications isn't a guarantee. We do the best we can and hope for the best. It's really all we can do.
I've shared this picture before, but it is the best visual of the financial cost of diabetes.

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Monday, May 15, 2017

Expect the Unexpected - Diabetes Blog Week 2017

Wow, this is almost the motto in our diabetes life!
Probably the most unexpected thing was my diagnosis at age 45....the 3rd diagnosis in our house in less than 4 years.
In everyday life, we have learned to expect the unexpected. We try to prepare for all possibilities. We go through the checklist before we leave the house....insulin, pen needles, snacks, meter, test strips. We're ready for the highs and lows.
Probably the hardest thing to manage is the fact that our 3 bodies sometimes react very differently to the same foods and situations. We are each learning our bodies and how they respond to different things. It's a life long learning process.
Some of the things that keep it fun with so much diabetes in the house is watching for matching blood sugar numbers on our Dexcoms. This is the closest to triplets we've ever been! Maybe one day I'll get that unexpected surprise!

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