I've never done much to spread information about diabetes besides answering questions people ask me. That's pretty lame considering I've had diabetes my entire life (I was diagnosed at 18 months). I really love answering questions by the way, but since I can't read minds, I don't know who has questions in the first place.
My friend, Erin C., is an amazing advocate for diabetes awareness. Since she blogs regularly (I don't), posts fb updates frequently (I don't), and does online research about advancements (I don't), she's inspired me to at least share a little about the disease, and my experience living with it. Here are the main points to tell my story:
1. I have Type I Diabetes. This is different from Type II. I'm not going to discuss Type II at all since I'm not an expert on it. Type I used to be called Juvenile On-set diabetes because they saw it crop up in young patients. That's a misnomer these days, and rarely used anymore, since young children fall into both categories of diabetes - type I and type II.
2. Type I Diabetes is an auto-immune disease. If you don't know what that means, in a nutshell, my own immune system attacked my own body.
Case in point: How I landed this disease.
I was 18 months when I was diagnosed, and the precursor to my problem started when I was exposed to the measles (yes, my parents were on top of vaccinations!). The measles antibody and the Islets of Langerhans - regions in the pancreas responsible for hormone production - look very similar. Do you see where I'm going here? My own immune system mistook my own cells - the beta cells that produce insulin (a hormone) inside the Islets of Langerhans - for the measles they were combating, and started to attack and destroy my own system, as well as the foreign bodies. No beta cells? No insulin. No insulin? No way to transport the glucose (from the food you eat) in the bloodstream into the actual cells, thereby depriving cells of energy and resulting in excessive amounts of sugar in the bloodstream.
3. You cannot get Type I Diabetes by eating too much sugar or by not exercising. This is a MYTH! Type II is a different story. Eating too many Snickers bars is not going to cause the reaction I mentioned above.
4. Currently, there is no cure for Type I Diabetes, however, there are technologies that make it one of the best illnesses to live with and still maintain a normal life - insulin pumps, continuous glucose monitors, insulin pens, etc. The following picture is sort of what my stomach looks like, only mine is less curvy, much whiter and also has scar tissue. =)
A) Minimed Insulin Pump
B) Pump insertion site (changed every 3-4 days)
C) Continuous Glucose Monitor (CGM) sensor (changed every 3-6 days)
D) CGM receiver (relays information to the insulin pump)
5. For Type I diabetics, insulin must be injected into the body by means of a syringe or an insulin pump. You cannot take an oral form of the medication (again, that's Type II stuff). I use an insulin pump - it's my third arm. I wear it 24/7 except when I shower or scuba dive. I've been on a pump since I was twelve.
6. I never go anywhere without my blood glucose meter. I use this to test my sugars (finger pricks) throughout the day to see how I'm doing, i.e. whether my sugars are too high, too low, or in the normal range. And what is the normal range? 80-120 mg/dl. On average, I test my blood eight times a day.
7. Aside from my pump and my meter, I always have sugar on me in the form of juice, glucose tablets (the two best sources for diabetics), or candy (not the best source because candy causes sugars to spike and then crash, but in a jam, it gets the job done).
8. My parents and Steve are the people who truly understand from experience how serious high and low blood sugars can be. I am literally not myself if my sugars go too high or too low. Extreme highs are bad, but extreme lows are incredibly dangerous if not treated immediately. Here are the symptoms (mine, at least) in case you come across a diabetic acting funny:
High: I cannot concentrate. My brain cannot respond to tasks that are normally easy. Ask me to figure out a complex equation? Impossible - I won't be able to do it. I'm hungry. I'm very thirsty. I don't move as quickly as I normally do. I'm really tired, and thanks to all the water I have to drink, I have to pee a lot too. This is the primary symptom that my mom noticed that made her aware something might be wrong with me when I was still in diapers. Solution: take insulin.
Low: I shake. I sweat. My eyes glaze over and you could be carrying on a conversation with me, but I will have no idea what you said. I don't respond quickly. I'm tired. I have no energy. Unfortunately, and my mother can attest to this, my inability to function well means that I can't swallow very easily. I remember a number of occasions when my mom had to raise her voice to get my attention while I was sitting on the countertop right in front of her while she was helping me to swallow sugar since I couldn't do it on my own. It's usually low blood sugar reactions that freak people out. Luckily, I catch myself 95% of the time before it becomes a crisis, but there have been times when I've needed others' help. Solution: Get any source of sugar into me as fast as possible.
9. Insurance isabsolutely necessary. Without insurance, diabetes cannot be managed properly. Without proper management, that's when you deal with loss of eyesight, kidney failure, heart disease, amputation and all sorts of complications that then require huge sums of money that burden taxpayers. I love it when people complain about Obamacare. I love it when they only see the bad and refuse to acknowledge the good (both exist). I really wish they'd do some in-depth research to learn about dealing with insurance while having a "pre-existing condition." Obamacare will radically alter these difficulties, and I am grateful for that. Good insurance is vital.
The numbers (that I deal with, though each diabetic is different) speak for themselves.
Supplies (costs per year without insurance):
Pump insertion sites: $1,040
Pump reservoirs: $270
CGM sensors: $1,820
Insulin pump: $6,000
CGM receiver: $1,300
I'm not including the cost for doctor's visits and lab work that is required - I don't have the numbers nearby....
Total: just shy of $20,000 including one-time fees for equipment, $12,000 per year if you only include costs for on-going care.
There are many other diseases that fall under the label of "pre-existing conditions" and I'm sure those diseases have high costs of their own. Like I said, good insurance is what keeps me going.
10. Diabetes is manageable! I've never felt that I wasn't a normal person, or that I couldn't do exactly the same things all of my friends were doing just because I have diabetes. If you are responsible and take care of yourself, you can lead a very healthy lifestyle and do everything you want/dream to do. My parents always reminded me growing up that others had it far worse than I did - others had diseases that were much more devastating than diabetes. I thank them for the perspective they drilled into me.
And there you have it. This is probably way more information than you've ever cared to know about Type I Diabetes, but hopefully it will come in handy some day if you ever come across someone with this disease that needs your help, or at least some understanding.
Steven Grant. Interested in all things political and non-fictional, as well as all things Taiwanese. He snagged his MPA from Ohio State and is now helping the Ohio DODD manage their money.
Kristen Kathleen. Doing what she loves - teaching and studying Art History at Ohio State University. One of these years she'll graduate and move the entire family to Europe. In one way or another she'll be in school for the rest of her life.