Dexcom SOS

When I saw my Endo at the beginning of January, we agreed that with my extreme hypoglycemic unawareness, the amount of lows I’d been having at night, and the forthcoming lizard spit dosage adjustments, it was of utmost importance for me to get a Dexcom. She was also honest with me that the odds of getting insurance to cover it were very very slim.

I went to the Dexcom website and called their customer care number. The woman I talked to was very kind, but unfortunately, she didn’t have any good news for me. She said it’s incredibly difficult to get someone with 1.5/LADA approved and it’s even more difficult to get approved when the person isn’t yet using insulin. She told me the company wants nothing more than to give me the safety and the security of their product but it’s almost guaranteed that even bringing the claim to the point of appeal will not get it covered in my case. I called my insurance company, and they verified that they don’t approve them the first time around for ANYONE (bastards) but with appeal sometimes they will approve them only for PWDs on insulin.

Uhm. Sometimes?!? Nice. Way to go insurance company.

Determined to get one, I used round about methods and had an amazing friend send me her backup Dexcom. Now that I have it in my hands, I called customer care again. I got another very nice person on the phone, but once again, there was no good news to be had. The out of pocket cost for sensors is far more than student loans can cover under “extras” even if I lived on Ramen noodles for the next 3 months and the odds of my insurance company covering something for a device they didn't approve are very slim. I called my insurance company and their response was a very direct “according to our records, you’re not allowed to get a Dexcom. There’s nothing in our system about us letting you get one.”

I’m not allowed to? You’re not letting me? Jerkfaces.

That’s when I started tweeting the SOS asking if anyone had sensors to spare. I HATED having to do that. I hated having to ask for something in the first place, and I hated that I was asking for the one thing I know everyone’s had to fight so hard to get. I SO appreciate the help the D-OC has given me and I think I should have 4 sensors by the end of next week. My hope is that if I can’t be hooked up during dosage finagling I can at least be hooked up to it for exams and avoid another hypoglycemic mush brain catastrophe.

Now, I just feel stuck. I’m not sure what move to make next. Would expired sensors give me an idea of how I’m trending even if the numbers aren’t accurate? Or does an expired sensor not function at all? The trends are really what I need - those double down arrows to warn me when I'm plummeting. Should I try from the beginning and fight for the device first in the hopes of being able to return my friend’s backup and get one of my own so the insurance company can’t argue (as much) with my need for sensors? I feel very discouraged which I know is the insurance company’s goal in this case. They want me to give up and not push for the device that I know I need. 

Despite my best efforts at control, I feel very unsafe with my diabetes right now. I can check my blood sugar before I go to bed and 30 minutes later I’m having a sweaty plummeting low. It just doesn’t make any sense and the Dexcom is the only way I can think of to at least give me a heads up before I get to the severe lows that take hours to recover from and make me too scared to sleep.  

If anyone has any ideas of what to do, please let me know because right now I’m at a total loss. 

Jonathan

Reposting from a year ago today...

---

There were many times throughout my youth, way before diabetes entered the picture, in which if mom and dad hadn't been so quick to react, they would have lost me. I remember one time in particular...

I had a horrible cold and had to stay home from school for a week. In the first grade, that was a very big deal. That Sunday, under protest because I was supposed to be singing with the children's choir, I stayed  home with dad while my mom and brother went to church. I was upstairs resting in my parents' bed watching cartoons when I suddenly started having problems breathing. This was something I was used to, it was another asthma attack, and so I headed downstairs to get my inhalers. When my dad saw me, he lost all color from his face. I was confused because for some unknown reason, I was having trouble taking my inhalers because I couldn't bend my fingers enough to get a grip on them. Dad did it for me, and then got my coat and said that we were going to go for a ride because I had been stuck inside all week. I was still in my pajamas, but dad said I looked beautiful just the way I was and I didn't need to change.

On our journey, we stopped at the church. Dad got out of the car and went inside wearing his jeans and his flannel shirt - he never went to church like that. He left the car running too, and he'd never done that before. A few seconds later dad came out of the church with my mom and brother; they were coming on our trip too. Mom got into the back of the van with my brother - she never sat in the back. She was praying and I didn't know why. Dad was speeding, he'd never done that before, and the lights on the van kept blinking, I didn't know they could do that.

Our journey took us to the hospital. Dad carried me inside and yelled that we needed help - he never raised his voice before, and I didn't know why he was asking for help, we were just going for a drive. Doctors and nurses started scrambling and telling my family to calm down. They brought me into a room and were giving me shots in both of my arms - I'd never gotten shots without holding mom's hand but every time I reached for her, they told me to sit still and told her to move out of the way so she held onto my feet instead. The needles kept coming, I counted seven of them, and there were two things that actually stayed in my arms, I'd never seen those before. In the middle of everything, a priest came in and blessed me and then I knew what was happening. From being in a Catholic school and having religion classes I knew that if a priest was blessing me in the hospital, I was dying. I didn't get scared, I had to be brave for my family just like my grampy had been the summer before. Very slowly, I started falling asleep.

I woke up to the doctor telling my dad that if he had gotten me there ten minutes later they wouldn't have been able to help me. He was saying lots of things that I didn't understand. I had hives as a result of an allergic reaction to something that they would never be able to pinpoint because the causes for hives are numerous. The allergic reaction was putting me into anaphylactic shock and I had angioedema, which is why I was having problems breathing; the reaction was attacking my heart. He gave my parents instructions on what to do if it ever happened again. From that day on, everywhere I went, in addition to carrying my inhalers, I had to have benadryl and an epinephrine injection in the event that I had a bad reaction again.

---

I was coming in from playing basketball in the gym during recess - it was one of the perks of being in the Seventh Grade. I was getting ready to go to class when my friend Audra told me that my face was splotchy. I ran to the bathroom and looked in the mirror to confirm what I already knew - after many years, I had hives again. I searched my purse but no benadryl was to be found, and I'd stopped carrying the epinephrine. I called mom and told her what was happening and she left work to come get me. When I called her, the hives were just on my face but they were slowly beginning to spread as I waited for her in the lobby of the school. While I was waiting, I heard a familiar voice say hello from behind me - it was Jonathan, I'd known all about him since I started school there in Kindergarten. Jonathan was born with congenital heart defect and had to have many operations and get a pacemaker very young. When I was in the Fifth Grade ambulances came to the school one day, he was in the Sixth Grade at the time and had dropped to the ground and started turning blue while he was switching classes. Thankfully, one of the teacher's aides that was a registered nurse was staying late at school that day and administered CPR until the paramedics came. After that day, he was put on the transplant list. He came over and talked to me while I was waiting for my mother watching the hives progress and cover the rest of my body. I told him that if I didn't get benadryl and get to the hospital soon, I could die. He told me that he knew he was  going to die someday soon, but he wasn't afraid.

---

When I started the Eighth Grade, we were getting news that Jonathan wasn't doing very well and began praying for him at every service we had. The local news was even covering his story - a 14-year-old boy  needed a heart and there wasn't one to give him. For Jonathan and his parents, it made them happy to know that they were raising awareness about organ donation and that in doing so, they might be able to impact someone and spare a family of the pain that they were going through while waiting for a donor. A little while after Christmas break, we were given some wonderful news; they had a heart for Jonathan and would be doing the operation that weekend.

---

February 13, 1997
It started like any other Thursday. It was the Eighth Grade's week for leading morning prayer service and that morning, I had to say the prayers. I went to homeroom and got everything ready to go to classes and then I headed to the principal's office - it was my job to ring the bell between classes and the controls were in there. He and I usually spoke but this time he was sitting at his desk staring off into space, his room was dark, he didn't have any lights on, and he didn't say a word. A few hours later, I was in English class painstakingly diagramming sentences when my teacher was called out of class by the principal. A few minutes later, she came back into the room and told us that Jonathan had passed away. He had caught a virus before he was supposed to have his transplant so they had to put it off and his body wasn't strong enough to fight the infection.

---

Author's Note: That day, Heaven gained its most special angel. Fourteen years later, I can still hear him telling me that he wasn't afraid.


Author's Note 2012: 15 years after I first encountered the roller coaster of being on a transplant list, I've now been given the honor to care for a patient awaiting transplant. And I could feel Jonathan pushing me every step of the way. 

Diabetes Secrets - One Year Later

A year ago today, Kerri posted about diabetes secrets. Over the last year I've spent hours pouring through all of the comments any time I needed a reminder that I'm not alone. That so many other people have felt what I've felt over the last 3 1/2 years since diabetes became a part of my life. I know that post and those comments have been a great source of support, strength, and comfort for everyone who’s come across them - even those who didn’t leave secrets of their own.

I wanted to be bold and write a blog post about my own secret right then and there. But I got scared and I knew that writing about it when I wasn't really ready to would probably hurt me more than it would help me. I decided it was better to comment with my secret and let it sit for a while. The act alone was empowering for me. Once that secret was out in the open, I felt like it was no longer my burden to carry. 

Now one year later, I want to own up to which secret was mine. On February 7th I posted: 

“I’m terrified that I’ll never fall in love because I’m too scared to get close to someone just to have him decide that a girlfriend with diabetes is too much of a burden.” 

Yesterday I celebrated 6 months with the greatest guy in the world. A guy I probably never would have met without having diabetes in my life. What can I say? Sometimes I’m proven wrong in the most amazing and unexpected ways. And sometimes, letting your secrets go helps you get out of your own way just enough to allow good things into your life. 

I love you babe. 

Defeated

Oh diabetes. You just had to do it, didn’t you? You had to pick today, of all days, to remind me that you’re still here and you’re still in control. You’re like a loser ex-boyfriend that I can’t get away from. Following me at every turn just waiting for the moment when I have my guard down to sneak up on me and pounce.

Today I had an exam. Not just any exam. A massive - studied for a week and a half at the expense of my other classes – 30% of my grade, exam. I knew I was prepared and went in feeling that I had a good enough handle on the material to pass without much difficulty. (In nursing school below a 77 is a failing grade). I followed my normal exam day routine. My fasting blood sugar was 86 mg/dl which is right on track for me. I took my lizard spit, had my normal exam day breakfast and was ready to tackle the test. 

15 minutes into the exam period, I felt tired and was yawning a lot. While I chalked it up to having to get up early this morning, I figured it was best to err on the side of caution and test. I was 70 mg/dl. I silently celebrated catching the impending low and decided to have 2 glucose tabs rather than 4 thinking that the exam adrenaline was due to catch up with me and raise my numbers a little bit. I treated and got back to work.

20 minutes later, I started seeing spots. I was sweating and my face was flushed while sitting in a classroom that’s notoriously cold. I tested again and was 41 mg/dl. Thinking there was no way that could have been right, I retested. Once again I saw 41 mg/dl staring back at me as if it was mocking me for the torpedo it was about to launch at my GPA. I had 2 more glucose tabs and tried to continue with the test. On a 140 question test, I was only 30 questions in.

I got increasingly frustrated. I couldn’t remember anything at all. I kept checking every 15 minutes as I watched my blood sugar slowly (very slowly) creep up. But once it was “fine” I felt anything but. I was discouraged and scared and anxious and had a hanglowover that I’d never experienced before during an exam of this magnitude.

I kept going. Determined to at least have an answer on every single one of those damn questions no matter how diabetes tried to interfere.

An hour later, the migraine started. I was silently cursing the sun that had just started to come out. The sound of someone behind me opening up a snack felt like a fog horn was going off in my ears. The girl next to me tapping her pencil made me want to reach over and snap it in half. I tested again. My blood sugar had shot up to 170 which for me, is an extremely uncomfortable number especially after being so low. All I could do was have some protein and hope that would at least keep my numbers from creeping up any higher. 

The higher number did nothing for my anxiety which, in turn, did nothing for the number and did nothing for the migraine.  

After 2 ½ hours, with an answer on every question, a massive migraine, and a blood sugar of 187 I handed in the exam. I could have sat there for another 90 minutes to finish out the exam period, but it wouldn’t have made a difference. I wasn’t going to suddenly remember everything I’d forgotten. My pancreas wasn’t going to suddenly start whispering me the answers. There was nothing I could do to help myself and the longer I stared cluelessly at that exam, the more defeated and broken I felt.

I truly cannot remember the last time I left an exam feeling like this. I’ve honestly never left an exam seriously questioning the state of my academic future.  There’s been times when I’ve felt as though I probably didn’t pass by much, but I’ve never left knowing that I knew nothing and had flat out failed. I promised my parents that I would call them when I got out of the exam and when I did I had to try to hide the disappointment and fear in my voice. And when I got off the phone, I cried. I cried the whole way home.

And when I got home, I was greeted with a blood sugar of 72.

  

I’d like to get off of this glucoaster of love misery now. Please?

---

Edit: Grades came out this afternoon. I passed. By ONE question. I've never had such a close call before, especially not on an exam I was so prepared for. And I never want to have another one.