Fight with Frankie…

Type 1 Diabetes is not a ‘take your insulin and call me in the morning’ kind of disease. It is a follow the plan, change the plan, prepare for all and everything, check your BG, check it again and again,…and even when you do—life threatening consequences can happen in minutes or hours.

Frankie went to bed at 8:30pm last Sunday night whole & hearty—a BG of 152. All was right on target. At the midnight check he was 178—not too shabby. By 2am he was vomiting with large ketones and a BG level so high the meter could not read it. Two hours—and everything changed. We dosed with extra insulin. Took out the old syringes and gave by injection instead of the pump. Tried to make him drink, little sips, little sips…but they came right back up. We were following ‘the sick day’ plan and diabetes was following its own diabolical plan.

By daylight, Monday morning, we knew we were losing this battle and called the on-call line of the Joslin Diabetes Center. Frankie had 4 units on board, and we gave another 4 units of insulin as directed. By 7am—that BG was still so high the meter could not read it. By 8am Frankie was asking us why there were “tiny children climbing trees in the backyard” and we were calling into work, packing a bag, and heading to the hospital.

Joslin had called ahead—so he was taken right in, hooked up to an IV, blood was drawn, urine was tested and my boy looked so tiny in that hospital bed. Severe hyperglycemia and ketoasidosis. Image

This is how type 1 diabetes tries to kill you. It sneaks up on you—with a severe low –hypoglycemia, or a severe high-hyperglycemia. Your own body—working against you –when you are awake and when you are asleep.

This is what diabetes is, for parents anyway-  being on watch, and constant fear. We don’t really put it out there—but we should—because how can the world really understand unless we do? Most days, he’s healthy, active, an average 10 year old boy. Other days…not so much.

Frankie is resilient, courageous, and kind. Frankie rolls with diabetes. He told us he was “sorry we missed work” as he fought this disease in that hospital bed. He caught a stomach bug, like all kids do, and T1D didn’t like it. We are living life, and finding a place for diabetes in that life. We could not have prevented him getting this disease or the complications that come along with it. There is no cure—just a band aid called insulin that doesn’t always work right when up against illness.

But Frankie… is back on his feet and will be going back to school tomorrow. It is behind him now, and he got through it as he does with all he goes through every day–with confidence, humor, and an unstoppable spirit of determination. Us parents, we fake it–smile and go on like no big deal–because we don’t ever want to squash that spirit–but we will remain on watch-as we have been, since August 23, 2010.

What’s Your Type? Please be Type S—Supporter of people with diabetes. Spread the facts, fight the myths.

Fight with Frankie. 

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The horrible, lousy, irritating, stupid, rotten, terrible week…

It was a sunny, beautiful fall afternoon. The trees were at peak and we were outside enjoying the day. Frankie takes a time out to take his number, grab a snack, and off to play he goes again. A group of ladies come ask “What was all that?”  which is okay—and I go through my diabetes 101—gladly, with a smile on my face.  Then the first horrible, lousy, irritating, stupid, rotten, terrible thing of the week takes place. One of them makes the Sign of The Cross and says- out loud-“Thank you God for my healthy boy.” Now I have heard A LOT of strange and odd comments—but never before this one.  I keep it together, smile, and say “You got a beautiful boy there” and I yell to my kids “time to go” and a long day at the park—turns short. The sunny, beautiful afternoon—turned a little grey…but I did not cry.

It was an organized, all ready to go kind of morning. As I say “rise and shine, time to get up” Frankie says “I feel weird.” The next horrible, lousy, irritating, stupid, rotten, terrible thing of the week hits—low BG in the morning. So Frankie eats, checks his BG, eats some more, checks some more and all this results in the need to have a ride to school and Mom being late for work.  The feeling of organization and all ready to go—out the window…but I did not cry.

It was a breezy night, the smell of drying leaves in the air. Off I go to a meeting held by my husband’s employer to talk about the insurance benefits being offered for 2014. I am not going into the unknown—we heard the rumors that the benefits will cost more out of pocket, and there will be changes. I get it—the employer has to make changes due to all the changes in health care reform-I’m ready to hear it and find out how much will be coming out of the paychecks, and I understand it’s necessary—really I do. The meeting progresses—I ask some questions during the open forum—relating to how the changes will affect coverage for my Type 1 son. We NEED to know—and the shiny book of benefits we got in the mail did not have the answers. Neither did the power point presentation. So I have to ask.  The next horrible, lousy, irritating, stupid, rotten, terrible thing of the week… “all your diabetes questions are making this meeting long—can’t you just figure it out? Geesh!”  I didn’t smell the leaves or feel the breeze through my car window—because I cracked—and cried my eyes out-all the way home.

A good nights sleep (as is humanly possible as a parent of a child with diabetes), hugs from my family and I’m back on my feet. What doesn’t kill us makes us stronger and all that. I post 35 ways to think ‘HAPPY’ on our diabetes awareness page—and I face another day. All is as well as it can be, till evening comes and the last nail in the coffin of my horrible, lousy, irritating, stupid, rotten, terrible week hits…I am notified that almost all of Frankie’s diabetes supplies are no longer part of the ‘formulary’ of our prescription plan. Beginning January 1—his insulin, pods to infuse insulin, his test strips– not covered. I don’t freak out right away—I call the script company-and ask what alternatives we have and told ‘you can still order these things and we will gladly ship them—you just pay full price.” Told to me in the smiley-est of voices.  I ask for a supervisor, then another supervisor—because I just couldn’t believe the answers.  No options. No over ride for medical necessity. A vial of Novalog “is estimated” to cost $175 out of pocket and because Novalog is not covered—the items that would be covered (there were two)—I will have to pay for too—because our plan states those items are only covered when ordered with insulin that is covered. “What insulin is covered?” I ask.  “We don’t have any options for you at this time ma’am. Is there anything else I can assist you with?” I want to say they can help by telling me how to keep my son alive in 2014—but I don’t…I say “thank you” and hang up. No good night’s sleep –I feel crushed by the weight of this news, by diabetes, by a total feeling of failure, fear and a horrible, lousy, irritating, stupid, rotten, terrible week.

It is now 5:22am. I am riding on coffee and a pitiful night’s sleep. On the agenda today—I am representing “What’s Your Type? Operation Awareness” at the American Diabetes Association’s Step Out Walk at Green Lakes State Park. I will be manning the ‘Safe at School’ booth, talking to parents about how to communicate with their school districts, and talking about the Diabetes Care Bill making its way through Albany. I am trying to figure out how much coffee it will take to get a glimmer of a smile on my face for this event. I am trying to muster up the spirit to face another day. Today is Saturday, the last day of a horrible, lousy, irritating, stupid, rotten, terrible week.

Coming out of the closet…

Did you know that today is National Coming Out Day? I want everyone to come out–and stop hiding the fact they have diabetes.

I think we are raising our kids to hide it. How many of our kids go to the health office for every blood glucose check, every insulin shot, every diabetes task? My son did –for 3 years. He could do these things right in the classroom,–but he went to the health office because ‘that is how it’s done.’  I know some kids with diabetes need help with these things–and they have to go to the health office–but what about the kids that don’t? What message do you think they are getting? Mine thought he was not to do these things in front of other people. He believed that every check and injection had to be behind closed doors.

No way. Diabetes is a part of who he is. He has to do these things to stay alive. As his Mom, I don’t want to raise him to believe he has to spend his life going into public bathrooms to take care of himself so no one will see what living with diabetes is.

This year at school my son moved to self care in the classroom. He doesn’t go to the health office anymore. He checks his glucose level, and infuses his insulin right smack in the middle of the school setting. (A BIG THANK YOU HERE to his school district for supporting him and his self management efforts.) Guess what…diabetes is now a matter of course in his classes. He is no longer ‘the nurses office kid.” His grades have improved and his diabetes health has improved. Since self managing -his A1C has gone from 9.1 to 8.5! Hooray!

Your neighbor, your co-worker, that person at the coffee shop–may have diabetes and you will never know it because it is thought of as a disease of your own making-so people hide it. That is just not true. It is a disease of a broken pancreas–beta cells not producing any insulin, beta cells not making enough insulin, or beta cells making insulin that is not usable by the body.

Let’s come out of the closet diabetics of all types! Stop taking the blame & put the blame where it belongs–on the disease!