Monday, January 23, 2012

Never Thought it Would be This Hard

When I was first diagnosed, my blood sugars were so high, they hooked me up to an IV and injected me with insulin every two hours for two days to bring down my sugars. I swore to myself I would not let it be this out of hand any more so I didn't have to go through the embarrassment, pain, or hassle of insulin. Believe it or not, I was diagnosed as a type 2 diabetic.

Two endocrinologists and one year later, my blood work as done once again. My doctor couldn't figure out why my blood sugar readings were so normal, but my A1C was at an 11.7.  They tell diabetics to strive for under 6. It was a Friday morning I had my appointment. I forgot to charge my phone that night, so it died. When I got to work at 5:00, I put my phone on the charger and realized I had six messages from my doctor urging me to call him. Of course, office hours were past time, so I called and left a message. Although I was nervous, I decided I would call first thing Monday morning. That let me sleep that night.

Saturday morning, my husband and I received a phone call from my doctor. "Charli, you need to go to the emergency room right away. Your blood sugars are in the 700 range" he said. "I will call them and let them know you are coming, but cancel all your plans for the day."

He believed I had Ketoacidocis.* The ER checked me. They found few ketones, but they did find what my doctor had suspected for months: I had Type 1.5 Diabetes, or LADA**. Which meant my pancreas slowly stopped producing insulin until it decides to just quit. Every once in a while, we believe my pancreas is still trying to crank out the insulin, making it very difficult to take the insulin I need without overdosing and getting low blood sugars. (I had never experienced lows before. They are scary.)

They also found that my kidneys were damaged from the Type 2 medicine I was on, along with my liver. This was even better news.

What this meant was that I would never be able to go without insulin injections again, unless in some wild dream they came up with a cure. This made me incredibly scared.

I told myself, as well as my husband, lots of friends and family, and the doctor that I NEVER wanted a pump. Call me vein and crazy, but I was afraid what I would look like in a bathing suit, and in a formal dress. I didn't want to connect it. I knew nothing about my disease. I thought if I was going to have a pump, it meant I was doing something wrong and I would never be able to be independent from my disease. I was scared people would see it and judge me for having a pager. I remember joking with a kid in high school and calling him Insulin Boy. (Sorry Brad.) I was afraid of the cost and stipulations. I was afraid of having sex and knocking it off. I was afraid my husband, with his fear of needles, would never want to touch me again. I was afraid I would never be the same and no one would look at me the same. I was just scared.

Then I met Jess. She had a pump. And she got me thinking about it hard core. She introduced me to the DOC and they reached out to me and told me stories about their pumps. They told me funny stories. They told me scary stories. They told me painful stories. And they told me "Thank God for my pump and CGM*** " stories. They showed me pictures that made me cry, gasp, and wince. But it was what I needed.

About a week ago, I decided it was getting closer. I started doing research and asking more questions to the DOC. I looked at all the pump companies and saw what they offered. I looked up assistance programs. I called my insurance to see what they covered--after my $1200 deductible, they covered 50-80% of the cost. Which means still, I'm looking at 1200-2500. I called my parents for help. I looked up studies to participate in. I looked into refurbished pumps and pumps from other countries that might be cheaper or help me better. I even looked at alternative medicine methods for a cure for diabetes.

Tonight, I talked to my doctor. Together, we decided I would go with medtronic. I have no idea how much I'll have to pay yet. Dr. G is giving the representative and counselor my information and we will set up a date in the next two weeks to get this bad boy in.

I have been crying all day. I'm still scared of everything I was before. But now, I know it will give me a better quality of life than I have been having the past couple of months. It won't make everything perfect, but it will regulate me more. I am excited for that. I am excited that my husband, my parents, my friends and some other family members are very supportive. And I am excited that I will have a new "pancreas." I am excited I won't have to carry my brief case of insulin any more. I am really excited I won't have to prick my fingers as much. Thats the best part.

I know I can do this. I have a lot of help. My doctor is awesome. And I ask a lot of questions. Plus, it will be around the time of JDRF**** in KC so I'll have physical support from people that are normally my electronic communication support.

I can't believe how little I knew at the beginning. I probably still know nothing. But at least I'm learning. I'm learning about my disease. I'm learning to take care of myself-both physically and mentally. I'm learning what this will do for me. I'm learning to forgive myself for not being perfect. I'm learning to love myself with diabetes. I'm learning I can do this.

*Wikipedia: Diabetic ketoacidosis (DKA) is a potentially life-threatening complication in patients with diabetes mellitus. It happens predominantly in those with type 1 diabetes, but it can occur in those with type 2 diabetes under certain circumstances. DKA results from a shortage of insulin; in response the body switches to burning fatty acids and producing acidic ketone bodies that cause most of the symptoms and complications.[1] 

**Latent Autoimmune Diabetes of Adults (LADA), also known as, Diabetes Type 1.5, is a term coined by Tuomi et al. in 1993 (Diabetes 42:359-362) to describe slow-onset Type 1 autoimmune diabetes in adults. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (Diabetes Care, Volume 30, Supplement 1, January 2007) does not recognize the term LADA; rather, the Expert Committee includes LADA in the definition of Type 1 autoimmune diabetes (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).”) The National Institutes of Health (NIDDK) defines LADA as “a condition in which Type 1 diabetes develops in adults.” LADA is a genetically-linked, hereditaryautoimmune disorder that results in the body mistaking the pancreas as foreign and responding by attacking and destroying the insulin-producing beta islet cells of the pancreas. Simply stated, autoimmune disorders, including LADA, are an "allergy to self.”

***WEBMD: CGM A continuous glucose monitoring system (CGMS) is an FDA-approved device that records blood sugar levels throughout the day and night. There are several approved devices -- Medtronic's MiniMed device, DexCom, and the Navigator, for example -- that can provide up to 288 blood sugar measurements every 24 hours. The system is used to measure an average bloodsugar for up to three days, while the person with diabetes continues daily activities at home.



  1. Hi Charli

    And you're right you can do this, you're not alone and it's ok to be scared of things that are new and can have such a profound impact on your life and those who care for you...

    Don't worry about the future, just focus on what you need today... tomorrow will get here eventually and you will have all that you have learned from today to work with.

    Not to mention that you are not alone in this

  2. Charli,
    What a ride you've had so far. The pump is amazing and I hope you find that it makes things much more smooth for you. I'm glad you have such a great support system (and more importantly that you know how to use it). Once you get started on CGM, please come share your thoughts.

  3. I wish I knew more about this a year ago, where the hell have I been, how did I miss this?! Well you know I'm here now...and at least you know there's someone out there who knows less than you do about it all! But I'm willing to learn :) Hugs!

  4. I just want you to know that you scare me half to death. But that's good because I have been a lot more conscious of my own diabetes as a result. Even having seen my father deal with his own diabetes most of my life, it just never really hit home. So, just in case you were wondering if you were making a difference anywhere, you are. I'm so sorry you have to deal with all of this.

  5. You are so strong! I love you, and I am here for you always and forever! ♥♥♥

  6. you, my friend, are an inspiration. truly. i mean that.

    i am so proud of how far you've come in such a short amount of time.

    and yay medtronic! i'm biased though. i love them. ;) let me know if you have any questions.

  7. Charli, I have to apologize to you. Maybe because it was so long ago that my grandma and aunt both got diagnosed, and their circumstances were different, and you know my mom played it down so we wouldn't worry. Maybe because you're so strong and you never complained much, and I could never imagine anything getting the best of you. But I didn't understand how hard all of this had to have been for you. I just want you to know how proud I am of you. You're handling everything like a champ. And remember, you're moving a lot closer to your extra family- anything you need, ANYTHING, all you have to do is let us know. You don't even have to ask, just let us know what needs done, we want to help you. Lol, in fact, I think mom is secretly just dying to come take care of you. I'm sorry you're going thru all this buddy. But it's going to get so much better.