Wednesday, January 4, 2017

Tethered and Uncomfortable or Tubeless and Miserable: Decisions and Diabetes

Well, long time... no blog. I could make up a ton of excuses as to why I've let my writing slip by the wayside, but to sum it up... life has been hectic. In August, I moved to PCB and I began the Physical Therapist Assistant program (see my last blog). But, that's not why I am here, this blog is all about life with T1D... so here goes the most recent saga. 
Diabetes wise, I've had a pretty tough time lately. As I've talked about before, I began using the OmniPod insulin management system in April 2016 and I was absolutely loving it, but, things have changed. When I moved out on my own and began school, I began having a lot of issues with random high blood glucose numbers, skin reactions, and pod failures. I began to get so frustrated with the system that had helped me for so many months and I wondered why my body was suddenly rejecting it. 
So, I began looking into my other options. I decided that I wanted to move forward and try to get the T slim insulin pump, an insulin pump that has tubing but is the most advanced pump technology wise. The only roadblock, insurance. Insurance companies only allow people with diabetes to get a new insulin pump every four years, I have only had my current pump for about eight months. So, we submitted a letter of medical necessity and photos of my blistered skin  with the request for a new pump… Insurance denied it. I was devastated. In the midst of waiting to hear from insurance, I got a severely infected pump site that spread to all of the open areas on my skin from reactions to the pump. I spent 2 weeks receiving antibiotic injections and extremely strong oral antibiotics. I was beyond frustrated and ready to rip the pods off and go back to doing MDI (multiple daily injections). What do I do now? Insurance obviously believes that it is not medically necessary for me to have a new pump, so what now? My doctor did a peer to peer with the insurance company, and they still denied. Next step was an appeal... an appeal for this pump that I desperatly wanted and felt like I needed. This is where things get interesting... 
The beginning of my infection saga... 
 
Thanks to some wonderful people, I was able to get a T slim pump to trial temporarily. This would help me decide if I wanted to go forward with fighting insurance (which is often fighting a losing battle). I got the pump put on and I was so excited for no failures, no rash, no occlusions. The excitement was short lived. After 24 hours attached to a pump with tubing for the first time, I was aggravated and I felt defeated. Frankly, I hated being attached to something and I hated feeling like I had to worry about this device. Is it going to fall out of my pocket? Am I going to accidentally hit buttons and give myself a lethal dose of insulin? (Yes, I know, safety features... but these were my thoughts after being on a tubeless pump for so long). And then, I ripped my site out on a door knob. I was done with diabetes, done with pumps, just... done. I kept thinking about how ridiculous it is that I'm having to make these decisions. I kept wondering why we do not have a cure with all of the technology and brilliant minds available. I kept wondering what I was going to do next in my diabetes management. So, through the holidays, I put my OmniPod back on and thought on it... 
My first day "tethered"
A few days ago, I decided to give the T slim another chance… I have a little bit more time to decide if we want to appeal the insurance company's decision, so I figured I needed to get the pump another chance before I totally ditch the idea. I have went into it with a better attitude this time and I've kept the pump attached for almost a week. So far, I am very pleased with my blood sugars, I am pleased with no pump failures, and I am loving how easy the T slim is to use. But, I cannot get over having something attached to my waist and having tubing hanging everywhere. Getting dressed in the morning is a hassle and I always forget to pull the stinking thing off when I go to use the restroom… So, what now? I don't know what is next, but I just had to write this to get it all off my chest… For those of you who do not live with type one diabetes or do not have a child living with it, this is life. It is frustrating, it is relentless, and it never gives me a break. I have to make decisions that no 21-year-old should have to make and sometimes these decisions are life altering or life-threatening. For those of my T1D, pumping friends out there I hope you can give me some words of advice or encouragement with this situation. I have about a month to decide what I'm going to do, so I will be doing a lot of researching and praying. Until I make his decision, I will keep on fighting this monster T1D and keep on enjoying school and life. I refuse to let T1D determine my quality of life. 

1 comment:

  1. Ashlyn, I'd suggest using a Bandi belt or something equivalent. I use it with my pump. It helps alleviate the pocket worries, and since it is independant of your clothes you don't have to worry as much about taking it off when you change or go to the bathroom. --Danni

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