A trip to the Dark Ages...

I have been incredibly spoiled in my diabetes care. Right after my diagnosis at age 14, our PCP sent me to the Barbara Davis Clinic (BDC) because he recognized that my care there would be much more complete than what he could give. Thank you Dr. Chesley--it was the best referral you ever made.

The BDC is an amazing center for the research and treatment of insulin dependent diabetes. I have participated in several research studies there, and the treatment options are cutting edge technology. The blood test that measures average glucose levels (an A1C) is taken via a finger prick and the result is available within 4 minutes. The staff really understands TYPE I diabetes and do everything in their power to help you control blood glucose levels. There are dietitians, nurses, and diabetes educator on hand IF YOU NEED THEM. My doctor is superb and knows that what works in theory doesn't always work in a type I body. I never feel censured when, after trying my best, my numbers are not perfect. Quite frankly, I find myself running out of superlatives to describe my experience at the BDC.

I love the BDC so much that I have been flying back to Colorado every 3 months to attend my appointments. I have been searching for a good diabetes doctor here in San Diego, but
1. Most have waiting lists of 4-5 months
2. Most are not accepting new patients
3. Most have no clue about the fine details of Type I.

A quick delineation between the different kinds of diabetes. Most diabetics in the world have Type II, also called adult onset, which means that the body either 1. Doesn't produce ENOUGH insulin, 2. Doesn't USE the insulin the body produces efficiently, or 3. Both 1 and 2. Gestational diabetes is basically Type II while a woman in pregnant. Due to the hormonal roller coaster or pregnancy, 1-3 can occur.  The treatment of Type II diabetes focuses on helping your body "remember" how it is supposed to work: a healthy diet, exercise, etc. Occasionally oral medications are used to help the body use insulin more effectively, and in the end some patients will end up using insulin.

Type I (juvenile diabetes) is an autoimmune disease, which basically means that the body's immune system destroys some part of the body, in this case the insulin producing cells of the pancreas.  IMMEDIATELY upon diagnosis, someone with Type I MUST begin taking insulin. Without insulin, the body doesn't work...sugar from food, and naturally produced glucose from the body, clog up the kidneys, eyes, circulatory system, and the body doesn't have any fuel, since the glucose stays in the blood. AT this point, if I didn't take any insulin, I would be dead within a few days. Not to be melodramatic or anything. Only about 8% of all diabetics have Type I.

There are tons of treatment for type I, and I use an insulin pump combined with a continuous blood glucose monitoring system. I have two needles in me...one is attached to my pump via a tube and gives me insulin. The other senses my blood glucose level and sends a message to my pump so I can see what my blood glucose levels are.

So much for my "quick" explanation. At any rate, hopefully you can see that the differences between the kinds of diabetes.

AT the beginning of January I tried to get my foot in the door with an endocrinologist here in San Diego. Yesterday I finally had my appointment.

The doctor I went to knows about insulin pumps and continuous glucose monitoring systems, but is clearly used to dealing with the other 92% of people that have diabetes. He really wanted to focus on making diet and exercise changes so "I don't use so much insulin." Really? I exercise about 6 hours every week, and eat a fairly stringent diet. I have been dealing with my diabetic body and how it works (or actually, doesn't work!) for 18 years.

The doctor was pleasantly surprised that I "know exactly what I am talking about" in terms of what is happening with my body, and that my eye exam and kidney tests were current. He was a little shocked that I had just been in to see my endocrinologist in Denver in January, and was amazed that I go there every 3 months (which is the absolute recommendation for check-ups for Type I).

After spending 15 minutes with me, he said "Well, our time is up so next time we will cover some more issues at your next appointment." The kicker is that this doctor is so busy that his next opening for an appointment is at the END OF JULY. In the meantime, he will have a bevy of people calling me: the diabetes educator who "knows" about pumps, the dietitian, and a different diabetes educator. AT this point, I feel like I am a diabetes educator myself (quiz me on a carb value...any carb!) and DON'T NEED the calls. I need a knowledgeable doctor who can help me tweak some insulin rates and uncover hidden pitfalls I might not think about.
He sent me down to get a blood draw for my A1C value, where the line to GET said blood draw was over 45 minutes (keep in mind that my 16 month old was at a babysitter's house and I had already been gone for close to 2 hours) and then I would have to wait 3 days for the results. I went straight to my car, gently wept while driving to pick up the baby, and then got mad.

I feel like I was enjoying living in a sparkling house complete with remote controlled appliances and a bidet, and now I am thrust into a broken-down shack with an outhouse. I guess the commute will continue.

Fun with lows

When I got married, I got a rude awakening. I always thought of myself as one of those lucky diabetics that doesn't "get weird" when I get low. It turns out that I do have some interesting quirks that come out when my blood sugar dips, which my husband pointed out to me.

Occasionally (not every time I am low) I get really quiet, or take a long time to answer a simple question. I  stumble over my words (probably because my tongue gets numb and tingly) and I have been known to laugh at random comments like a hyper third grader sucking helium. It is important to note that I don't notice when I do this, which is why I was surprised to discover this about myself.

I have never "freaked out" (phrase taken verbatim from one of my friend's parents..."Jeanette, I don't want you to freak out on me") and I am lucky enough to wake up when my glucose is dropping (it makes for some interesting dreams...whatever is happening in my dream changes to reflect a low blood glucose level...once I dreamed that my blanket turned into a blueberry pop tart, which is weird in and of itself since I only like strawberry pop tarts, and I ate my entire blueberry pop tart blanket but was confused because I was still low, which is when I woke up and ate a strawberry pop tart).

Anyone with diabetes or anyone that has a loved one with diabetes probably has some entertaining stories about being low. Let's hear them! Laughter is the best medicine.

Once upon a time...

Everyone has a good story to share, whether it is about the time your car broke down on the freeway and you were rescued by a motorcycle gang wearing tutus, the time you singlehandly managed to cause a power outage for the entire city, or the time your pants fell down in the school cafeteria when you were in fourth grade.

People who have been diagnosed with a chronic illness, like diabetes, all have a good story to share about the time they were diagnosed. Sadly, not all of these stories are filled with humor and warm fuzzies, but most stories are poignant experiences detailing changes in identity and lifestyle.
I was diagnosed when I was 14 years old, the month before I started high school. I had been feeling tired and thirsty all summer, but we chalked it up to me being busy with early morning swimming team, theater workshop, and fun on the lake boating and camping.

My mother had the feeling something was wrong, and her fears were especially piqued during a short road trip. I drained our family's two gallon jug of water within the first 45 minutes of the trip, and was so desperate for water that I tried to fill up the jug with sprinklers from a rest stop. The water was a horrible rusty color and there was a sign that said "water is non-potable," but I tried to drink it anyway. Luckily it tasted so bad that I wasn't able to drink much.

At our destination, the water also tasted bad, so I satiated my thirst with regular soda. In hindsight, that made everything worse, but of course we didn't know that at the time.

A month after the trip I was preparing to go camping. I thought I had a bladder infection, so we went to the doctor to get it taken care of before going into the wilderness. While I was providing the urine sample, my mom asked the doctor if he could run a diabetes test as well. He thought she was being overprotective, but did it anyway.

When the doctor returned to the exam room several minutes later, his face was grave as he explained that I had a little bladder infection but an abnormally large amount of sugar spilling into my urine. He sent me down to the lab to get a blood draw and said he would call with the results the next afternoon.

That same fateful Friday my older brother had a collision with a car which totalled his bike, and my sister found her treasured opal necklace crushed in the garage. My mom loaded  us, the three kids, into the car and took us to the fire station, where my dad was at work. She had us share our woes with him, and I went last. I said in a rather casual manner "yeah, I might have diabetes." I remember my parents exchanged a meaningful glance, but I still wasn't letting it sink in. It was, after all, not a real diagnosis. If something was really wrong the doctor would have done something at the appointment.

Everyone else was worried, but I was fairly cavalier about the situation.  I even tried to wheedle my mother into taking us out for ice cream, because if I DID end up having diabetes, I would never get the chance to have ice cream again. She did not comply.

The next morning, at 7:30 AM, we heard the phone ring. I knew what the call must be, and I was right. A few minutes after the end of the murmurs on the phone, my entire family came into my room to wake me up (like I was asleep!). I went into the hospital immediately, and the rest is history.

Looking back at my diagnosis story (can you believe this is the short version?), I think of the emotions felt not only by me, but by my family and friends. The support I felt at the hospital was incredible, and sometimes I have to remind myself that diabetes is not just MY disease, but a condition that affects the important people in my life.

I also am reminded about how blessed I am with how far technology has come since my diagnosis in 1993. My first meter took 45 seconds to get results, I was on several injections a day, and I was told that I couldn't eat anything where any form of sugar was one of the first three ingredients. Wow. Now I have my pump, a continuous blood glucose monitoring system, and a great carb counting system.

What is your diagnosis story? I'd love to hear it!

A bit about balance...

Balancing is not my strong suit. The only way I could ever ride a skateboard was by holding a jump rope while my brother pulled me on his bike. Slalom skiing was unsuccessful, and let’s not even talk about the unmitigated disaster that was the balance beam in gymnastics. I find it ironic, then, that I have a health condition that is so dependent on balance.

I have insulin dependent diabetes mellitus, which means that my body does not produce insulin. This means I have to test my blood and give myself insulin and try to keep my blood glucose levels hovering in a pretty narrow range. Too much insulin results in a low blood glucose level, while not enough insulin results in a blood glucose level that is too high.

Factor in food, exercise, stress, illness, and random acts of nature and the amount of insulin that works one day to keep glucose levels in check doesn’t work the next (a further explanation of how diabetes works will be posted later as a reference, for those who are unfamiliar with the nuts and bolts of diabetes). Some days it seems as though I merely pass through my target range and wave hello as I plummet down or shoot up.

Luckily, I have fabulous resources to help me track and monitor my health balancing act, and although I may occasionally wobble, I don’t fall. I need to be in control of my diabetes so I can do all the things I want to do, but I want to do everything without having diabetes be my primary focus. This blog is devoted to sharing my highs and lows (pun fully intended) as I strive for finding a healthy balance in my life with diabetes.


 I would love to hear your insights and reflections, from struggles to successes. Whether YOU have diabetes or someone you know and love has diabetes, I want to hear about your experiences as you  balance life and diabetes.