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.