November 15, 2011
Last week we went for our all important three month check of our A1C numbers and a heavy dose of looking at our daily numbers and our nutrition. As a diabetic your A1C number is this grand number that tells you really what is going on with your body – and you can only get an idea of how things are going every three months. Your daily numbers, while important to ensure that you are getting the right amount of insulin and not dropping into scary lows or really high highs, don’t tell you the whole story – that is what your A1C is for. These appointments are a necessary but not a favorite part of my life.
I would have guessed last week going into our appointment that Allison was headed out of her “honeymoon” period – but I was really WRONG. Her A1C showed that she was still right there in it. I guess either 1 – I am too new to diabetes to really understand what is really happening to her or 2 – I just don’t get it! Oh those are the same things – and after the appointment I realized how much I don’t get a lot of things yet – I am still no expert at this and I questioned a great deal if I will ever get it.
The night before our medical appointments makes me really crazy. I find myself running around making sure my long chart of numbers (an excel sheet all worked up with her numbers for each time she pricks her finger, organized by time, carbs and insulin amounts in rows so you can compare similar times of day) is all organized and filled in. However I missed some numbers, forgot to right them down when we are out and about – nope I am not perfect after all (yes that bothers me a great deal)! I will sit there and stare at the empty date and time for dinner or lunch and try really hard to remember what she ate and did that night. I realized that remembering anything is too much for my brain right now – the space is gone it is all taken up with how many carbs are in what servings of everything we eat! I finally give in and get it all organized and printed out (with some empty slots) and put our big binder together that I carry around to our appointments like my bible.
I am always so nervous about these appointments. Allison never seems nervous. We spend about an hour with our nutritionist – learning what we are eating isn’t exactly what we should be and coming up with ideas for snacks and alternatives when she is high. We know and hear that she needs more proteins and that if we could squeeze in some more vegetables that would be great. But, our nutritionist never forgets to say that we are doing a great job and Allison is a 7 year old kid and should act like one – so keep reinforcing good habits and eventually they will kick in and get better. The scary thing about this is that Allison is by far our best kid with her eating habits (I start to feel bad about my other two kids - at least I don’t have to tell her what they eat!)
We then spend over an hour with our diabetic educator – the person that keeps us on track – that is always there via email or phone – pretty much any time of day no matter what – our life line to sanity. We go over Allison’s A1C and what a surprise - she is still in her honeymoon – after 6 months a little surprising but that is a great thing apparently. We go over my exhausting list of numbers (just the past two weeks) she asks if we are getting any sleep (which is funny!) and then move into any alterations that we might need to make to her insulin regimen. Only her long term insulin gets changed and VERY little. Her numbers - while I see HIGHS - they see an A1C that is low and more daily numbers within the target range than out of it so we are apparently right on track.
At that moment I realize I really don’t understand any of this – I have been worried out of my mind about everything and now a feeling of being overwhelmed encompasses me. I think because I had something in my head that wasn’t there – I worry so much every day, all day, about numbers and insulin and carbs and now I am being told that it all looks great. It didn’t look great to me - just reinforcing in my head that apparently I still have no clue what should be happening daily with Allison’s numbers.
We then start talking about a PUMP. A PUMP – my mind is still in a state of being overwhelmed and we are now talking about a pump. Are we ready for one – a big yes comes out of my mouth (not sure why) and Allison perks up and really starts to listen. No more night time shot in the butt with a pump – her very least favorite part of having diabetes would be taken away from her – YES she wants a pump. We are then handed a test and told we will have to take about 5-6 classes, depending on how we do on the test. We will have a trial on a saline and have to make decisions on the type of pump (depending on insurance), etc, etc, etc, etc, etc, etc, etc – at this point listening is out the question for me. I was thinking about the test – really – no one gave us a test before they let us take her home as a baby. So you can have a baby and expect to be able to do it all but you can’t get medical treatment without taking a test? Luckily the test is easy for us – it is used to gauge your knowledge on the subject of insulin and carb counting – apparently I know more about those things than I thought – maybe I do get it? By this time though my mind is even more filled with pressures and questions (that is what the classes will be for?)
I left the appointment feeling overwhelmed and like crying all the way home – but like all parents I pretended like it was all good. My outside persona -- Just do it! We will tackle this and move forward like we always do – that is the Holdgreve way of doing things. (Maybe we should be a Nike ad!) I put on my face and outside that we are stronger than this disease. As I walked out of that appointment I felt like diabetes was beating me. I don’t understand it – I felt I never would – I felt defeated. That was probably not the intention of any of medical team – because everything was great – but that is how I felt. I talked to Allison – she was great and excited and realized that SHE IS stronger than this disease – so I hold back my tears and move forward.
The ride home is one of my other blogs – you should read it – my feelings of being overwhelmed made me write that blog – there is something better and it will get better and we will get through this and we ARE stronger than this silly disease – it will not conquer us. (The Beauty Around the Next Corner......)
When I feel like I did then I am going to try to hold tight and try to see this through my daughter’s eyes. I am not the one carrying this disease inside me – she is - and she does not let it stop her or slow her down. She is human and like all of us – she has her moments - but they are so far and few between. I take solace that I am raising strong children that support each other so fully as a family. The Holdgreve’s we will fight and fight and even if we get knocked down and feel out we will pick each other up, dust ourselves off and start again.
I still feel overwhelmed frequently and like crying at times - like now – but I am going to pick myself up, dust myself off and go pick my kids up from school and get on with our lives. We will not let this disease define who we are as a family – our strength and character will do that for us!
Until there is a cure,
Jennifer
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