That trembling, scary moment when you jerk awake from a deep sleep to realize your blood sugar is low. Panic sets in as you try to remember the basics of things. You check your sugar and it’s 47. Not too bad, but it seems like you’re about to die…
I hate it. I hate waking up like that. I hate that shaky numbness that hypoglycemia gives. I hate waking up covered in sweat with the tangible fear of a low. I hate the aftershocks of hyperglycemia if I over treat, but I hate the fear of not having enough and bottoming out more. It’s a fight waking up to a shock to your system like that. I don’t have the words to fully describe how terrifying of a situation it is. The fear of worrying about “will I wake up next time?” is there. I always have woken up, but that thought lingers. Satan loves to whisper it.
I am a type one diabetic. No, it was not something I did. No, there was nothing my parents could do to prevent it. No, it can’t be cured even with “cinnamon”, “okra water” or whatever “Sparks” is. There is no cure for Type One, it is an autoimmune disease. Type One, you have to take insulin either in shot or via a pump or you will die. No ifs ands or buts.
I’ve fought highs and I’ve fought lows–literally and metaphorically–over the years I’ve been a type one. Hypoglycemia unawareness is huge and deadly problem with diabetes. Search “dead in bed syndrome” if you want to know more. Too many people have perished from this and my heart breaks. Children have lost parents, parents have lost kids and spouses have lost partners… This should never happen especially when there is technology that can help prevent that. It is sad to see that few people have access to a CGM[continuous glucose monitor] even though most of them desperately need those lifesaving devices.
While my insurance doesn’t cover the CGM, I am okay with that for now. I have always woken up, I have not passed out from a low and I am able to tell when my glucose is dropping…even if it is dangerously low sometimes before I am aware. That is a blessing and I am so thankful for that. The longer you have diabetes the easier it is to lose that feeling or some have that problem from the beginning.
It was August of 2003 when my life changed forever. I was sick with the stomach flu…or so I thought. I couldn’t breathe and I was so weak I couldn’t stand myself. Honestly, I wanted to die…. I didn’t realize how close to death I was. My Grandpa, Raymond, came over the afternoon and spoke with me. He would talk and I would fall over every little bit. At the time, I had wanted to be alone, but I am thankful that he came by when he did…
After that, my parents took me to the doctor. The doctor wasn’t the one I usually saw so my dad was already annoyed. He was downright livid when the man barely stuck his head in and declared I had diabetes. I can’t blame him; we didn’t even know there were two different types at that time. After a finger stick, they rushed me to the ER via an ambulance. I am not sure what the reading was there, but I do know my sugar was over a thousand at Arkansas Children’s Hospital.
My memory blanks, but I do remember bits and pieces. I remember waking up as they were prepping me for med-flight. The nurses were kind, but all I wanted was my mommy and daddy. I was terrified. I barely remember being in the helicopter. The clearest memory is a hallucination I had. I saw my mom walking away and leaving me at the hospital. I cannot tell you how scared I was. I was trying to get free and get to my mom. It was so bad that they nearly had to tie me to the bed. Thankfully, my grandparents soon arrived. At the time, they were logging up around Little Rock and were able to be there. My parents were on their way, too, but we live two hours away. My grandmother was able to calm me down, but it didn’t last long as I was still confused and didn’t understand. I am so glad someone was able to be there with me.
My turnaround was nothing short of a miracle. They had warned us that with the state I was in, I would be in there a minimal of two weeks. I was discharged after three days. I wanted nothing more than to go home so I worked, I listened and I did what I had to do to get out of there. I appreciated their help, but I despised that place at the time.
Denial is the hardest part. Being a Christian, I believe in healing and I have personally witnessed several of them. With Diabetes staring back at me, it was hard to hold on…and even more so when people I looked up to told me that God would never heal me. Some ministers even dare to blame the person who is sick. It was hard coping with this disease and those thoughtless words didn’t help.
My parents are amazing. They did whatever they needed to do and were always there for me. The rest of my family was a huge support, too. Even though I was the one now “sick”, I wasn’t alone in this because they were all there to help and support me. They have always been there for me and I know that is a big factor in why I am here today.
In 2004, I was blessed with a pump. Thank God they are usually easier to get covered under insurance now, but then it was not. It had not been a year since I was diagnosed when my Endocrinologist recommended one, which was rare at the time. My A1Cs had been pretty well. It dropped from around 13 to 5 something the first time, which was amazing. They wanted me to have more freedom and to help with the lows that I frequently had. ArKids was my insurance at the time and pumps were not something approved very often. I was one of ten–I cannot recall the exact number but somewhere around there–case that was sent out of State to an independent doctor for review. What was amazing I was the last, unexpected candidate added. I remember crying so hard when they said yes.
With a pump, life is made easier. I did the best I could and my doctor called me the “poster child” for diabetes, which motivated me even more. The biggest factor in that were my parents. I took control of my care, but they always asked and made sure I was doing okay. There were hard times, too, even with the pump, but I handled it well because of my family.
In 2009, I lost ArKids. My pump gave me the dreaded “motor error” not one month after that. The lifeline I had was viscous ripped from me. I had supplies that would have gotten me through for a while, but no pump to help. I had no idea what to do. My insulin was free from the company because of how low income I was, but I could not afford anything else. I went from testing 7 times daily to maybe 3. That was scary. No one should have to go without medically necessary items. At the time, I didn’t have access to the wonderful information and support offered on the web so I have no idea of the assistance that was out there. I am just thankful I survived that year.
In summer of 2010, I had insurance again and a new pump. Sadly, my new bad habits followed and it took some time to readjust to taking care of myself properly. When I lost my insurance, I went to a regular doctor who was such a help. He knew next to nothing about diabetes, but he helped me get through the lack of insurance. With a new pump, I needed a new Endocrinologist.
It amazes me how few good doctors there are. I had one doctor humiliate me for being on Medicaid, acting as if I was some lowlife who did not work and did not deserve coverage. I became disheartened and I wasn’t sure what to do. Eventually, I moved back to shots because I hated the three month visits required of my insurance and the two hour drive was too much. There were local doctors that would see me if I went back to shot. I thought I was making a good choice at that time.
My A1C had climbed to the highest it had been since I was diagnosed, although 7.4 is not horrible I know it will kill you eventually. I knew I needed to make a change. Before, the shots hadn’t been an issue, but they weren’t working well enough now. The over a year gap had been too long and I was so thankful to have my “buddy” back. I worked hard and checked up to 14 times daily to drive my A1C down. I cried so hard when I finally saw the 6 month effort pay off and it had dropped to 6.8, which was close to my goal.
I was happy. I felt like I was on the right track. The three month visits didn’t bother me anymore; I was happy to go simply because I wanted to see my A1C. To my shock, it was 7.3. For the life of me, I have no idea why. My blood sugars were the same and there should have been no reason for the change. My Endo was apathetic and would not help me make any changes to better that, but assured me that she would not leave me there. On top of her ignoring my other health issues and mocking any suggestions I had, that was the last straw.
I was torn. I really didn’t know what to do. Medtronic lacks in some areas, but in others they are a great company. They suggested another doctor who was farther away, but I prefer that city over the one I was going to before. She wasn’t taking any new patients at the time, but since Medtronic had recommended her, she was willing to see me.
I wasn’t sure what to expect honestly. Part of me was afraid she wouldn’t be of any help either. However, she has been the most amazing and wonderful doctor I have ever had. After my appointment with her, I cried. I know it might seem silly, but it was so wonderful refreshing to hear a doctor listen and actually care about you. She assured me that she would get me to my next A1C goal of 6.5 and I felt relieved. She has gone above and beyond and I couldn’t be happier. She personally sent my test results to me and even called my mother for an update. She was thrilled to tell us that my A1C was 6.4 and bragged on how well I was doing. Your Endo is one of the most important people of your care team so make sure you have one that does care and is willing to help.
My A1C was up a bit the last time I went back. Not much, 6.8 or so, but that isn’t acceptable for me. I knew I needed to make a change, but I was torn on what to do. For a while, I had seen information about Lchf[Low Carb, High Fat] and I wanted to try that diet in hopes I could drop the lows and highs, but I was reluctant to make such a dramatic change… I knew this would help, but I was scared to try something so different.
Finally, this past month, I decided to make the change with the support of my husband and parents. They wanted to try the diet with me and I knew I could do this with their help. I was pleasant surprised by the food. I am not as strict as some are, I can’t limit myself to just 20 carbs. I do, however, stay right at under 30. Since then, I have lost 10 pounds. Because of lowering my carbs, I have lowered my insulin–basal and bolus both. I take around 60 to 70, which is a dramatic difference from 100 to 120. I went from taking 300 units every 2 to 3 days to less than 200 units every 3 full days. It is amazing. My sugars stay mostly under 100 unless I have treated a low. I cannot wait for my next A1C!
It would have seemed to strange to me a few years ago to speak about diabetes so openly. I was ashamed at first because people want to blame you, but now I proudly share I am because I want people to stop seeing the disease and starting seeing the person. I love the JDRF campaign “T1D Looks Like Me” and I hope it sends a message to people.
No one likes being sick. No one likes having a disease that has such a bad reputation and so many misconceptions. No one likes having to fight daily for their life and their future health. There were points where I hated my life, I wanted diabetes to merely go away. At the same time, I am thankful for what I have been through. It is because of this, I have compassion and understanding. I had heard of diabetes before, but I didn’t understand until I walked in those shoes. My eyes were opened and I saw how difficult it can be.
My point is this: I am thankful for the growth this disease has brought me. I am who I am because of what I have gone through and I am glad. I am strong because I have been pressed. I am able to fight because I have been forced to fight so hard every day for so long. I am grateful He[Jesus] knew I could bear it.
To all you who are diabetics or who love a diabetic, you are special. If you deal with diabetes, you are strong because it isn’t easy. Every day is new. I have done the same thing twice and gotten two different results. I know the frustration and trying times it brings. For those of you that love a diabetic, thank you. You are wonderful. You care and you are there, which is what we need.
Feel free to share your story in the comments below. I would love to hear them!
Happy World Diabetes Day!