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.

9 comments:

Anonymous said...

It is scary to think that we might have 2 little type 1's here soon. The girls couldn't ask for a better mom to be there for them through this disease though. You are an amazing woman and I can't think of any one whom I would rather have watching over our girls.

Krissy McMomma said...

My oldest daughter was dx Jan 2012. We found out in September that my little one has 3 positive autoantibodies. Her first OGTT came back abnormal by 3 points. We just had her second one last week and while the fasting and 2 hour mark was good, the in betweens show us that there is definitely something going on. This waiting period is the worst. It's like on the one hand you want to do everything you can to delay the diagnosis, but on the other hand you know it will be somewhat of a relief when they are finally diagnosed. Because I know what to do once she has it. I don't know what to do with all of this waiting.

Josie and Wayne said...

I'm so sorry you guys have to go through all this. You are very strong, whether you want to be or not.

Lora said...

I honestly don't know which is worse... A dx when you have no idea what's coming or knowing and waiting. I cry those private tears with you and I hate that you guys have to face more crap. You deserve a break. (((hugs)))

wendys said...

Oh wow. I don't ever have the right words to say. Just know I do think about you and your family and wish I could do more to help.

The Lane Family said...

I do not have the words to say..but I do keep you in our thoughts and prayers and pray that there will be a cure and that Morgan may not have to have the challenges of this disease as well.

Mel said...

You're an amazing family and its heartbreaking the challenges you face on a daily basis. I pray for your family. May the Lord continue to bless you with what your family needs.

Misty said...

Oh the waiting and watching must be so difficult. You are so strong Shamae...you are an inspiration to me! And I also understand the silent tears, although the public often catches a peek too :)

You and your family are in our prayers. Hugs!

Erin said...

OH Shamae, my heart truly aches for you and your adorable family. I sit here, tears streaming down my face while reading your post. I showed Aubrey, My almost 7 year old The T1 Video you made with Sydney. She was asking me a lot of questions...I too don't know much about T1. Thanks for teaching and explaining what this disease is about. You are always in my prayers. Love you. ERIN