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.