2 weeks ago
Saturday, January 12, 2013
Facing Another Diagnosis--The eye of the hurricane
It hasn't been too big a secret that our family has been put through the ringer again and again. I don't know why yet but I have to have faith that someday all the heartache and silent tears will be accounted for and I will understand them. But, for now, I weep privately and have almost trained my eyes to never water in public. Public is an ambiguous term of people who just don't get it. They may want to. They may be your best friends and want to help but there comes a time when even they can't know the tumult that rocks your world.
Since Sydney's dx on Feb. 25, 2008, we live in a hurricane zone. The hurricane is composed in insulin to carb ratios. Hurricanes based on low blood sugars that cause seizures. Hurricanes so unpredictable that we can log a very high 450 number in a daughter filling up with toxins from DKA and we pump insulin into her in order to rid her body of the deadly toxins, we fight and fight to pull her back from the brink of DKA and eventual death only to have another hurricane swing in unannounced The next time we might be holding Sydney prisoner to severe lows where she shakes uncontrollably. She cries. She hurts. She has rapid breathing and clammy skin. Often an uncomfortable tachycardia heart rate She is now facing death from low blood sugar. SO we fight and fight. We use all the knowledge we have to fight her off he lows. Away from the seizures and potential brain damage. We battle this damn hurricane all the time. Sometimes the hurricane calms and feels more like a breezy day at the beach and out then of nowhere the hurricane comes in and tries to claim Syd's life. We try to always be on our toes. We try to always watch because everything is so unpredictable.
Morgan has been part of a trial study for siblings of Type 1 Diabetics. It measures the antibodies in her blood. We shouldn't have any. The presence of antibodies could mean an autoimmune response has been triggered and the body isn't producing insulin properly. The body is killing off islet cells in the pancreas and slowly blood sugars rise until a diagnosis is made. It's a tough diagnosis. There is so much to learn about this disease. We have been at it for nearly 5 years and I don't know everything I need to know. For whatever reason, Morgan's body is showing symptoms of developing this disease. We randomly check her blood sugars and they have been increasing. Fasting blood sugars should be under 100 and hers haven't been under 100 in a while. The past couple months we have really backed down on checking her sugar because she hasn't been diagnosed and if, eventually, she is diagnosed, she will be checking it often enough on her own.
So we wait. We watch. We are trying to keep track of symptoms but there isn't anything we can do to stop it if it is a pending diagnosis. Every year we raise money for JDRF and hopefully at a future date...sooner rather than later...we can find a way to stop or reverse islet cell damage. In the meantime, we have our hurricane and we do our best to manage it. I realize this post talks about the emotional toll of this disease and at a further date I might make a post about the financial toll of this disease. :) Thanks for reading.