Me


#1

Hey, all. I run a lot of other blogs and don't plan to spend a whole lot of time on this site, but since you're looking at me, here's a bit about me and my labeled life.

Diagnosis Story: I was diagnosed with diabetes on September 1, 2006 at the Illinois University Medical Center. I was 17 years old. My mother took me. She wanted us to walk to the train station because she gets motion sickness, but at that point I waddled with a distended stomach in front of me, and with a lot of effort, so we took a bus to the train. Getting off the train, I followed my mother, trying not to gasp for breath, putting all of my effort into putting one foot in front of the other, and not peeing in my pants. They have nongendered bathrooms at the Medical Center- I used the bathroom on the first floor. We went up the elevator, and I took a long drink at the water fountain, noted the bathrooms. While we waited in the office, I took two breaks to waddle down the hallway to the water fountain and come back. I flipped through the magazines, noting an add for a diabetic watch. I think it had special alarms or something. I told myself not to be dramatic, that of course I didn't have diabetes.

My mother and I got called into the office of Dr. Buchanan, and my mother did most of the talking, about me and my other disabilities and that sort of thing. I showed her where my stomach hurt the most, had my temperature, heart beat and blood pressure taken. Then the doctor told me to go and pee in a cup, so I went to the bathroom, peed in the cup, gave the cup to the nurse, and headed back to the examining room to wait with my mother. The doctor came back, and she was smiling, triumphantly. There's a lot of sugar in your pee, she told me. She had me go over to the nurses again, this time for a finger stick. The nurse poked my finger, sucked up the blood, we watched and it went BEEP BEEP BEEP 425. I had not eaten anything in about 6 hours.

My mother started crying and so did I. We went back into the examining room, and the doctor said that since I was 17, I probably had type 2 diabetes. She wrote a prescription for liquid metformin, since I can't swallow pills, and told us to make an appointment with an endocrinologist after the holiday weekend. She told us that I would probably feel better within a day or two of taking the metformin. I was happy in a weak sort of way. I went down the hall to another office to get my blood drawn. It took two tries because I was dehydrated and my veins were even smaller than usual. I got a tasmanian devil bandaid.

The medical center pharmacy didn't have liquid metformin. On the way home, we stopped at another pharmacy that also didn't have liquid metformin, but they located a pharmacy that did. I went home, and my mother went to that pharmacy.

At home, I had started on a bowl of lentil soup, when Dr. Buchanan called. My father said she wanted to speak to me. The doctor said that the blood test results were in and that it looked like I had type 1 diabetes after all. She said I should check into an ER as soon as possible so that I could be put on insulin overnight. She said I'd probably be there overnight. I asked if it could wait until after the sabbath; she said no, in that time she was very afraid that I would go into a coma. I said I was going to wait until my mother got home, and that I'd go then.

I checked into Evanston hospital, where I was put on IV insulin, glucose, water, and potassium. A little after midnight, I was put in an ambulance and transported to Children's Memorial Hospital. The ambulance guys told me not to worry, that I probably had type 2 diabetes. They told me that about half of the people who ride in their ambulance have diabetes.
I stayed in Children's Memorial Hospital for four days.

Test results eventually showed that I was positive for ICA 512 and GAD 65 antibodies, confirming the type 1 diagnosis. My hbA1c at diagnosis was off the charts, as taken by Illinois. Medical Center and by Children's Memorial. My venous blood pH level was 7.25, with a reference range of 7.35-7.45 where <7.3 is considered acidosis. According to Evanston Hospital's testing, my c-peptide levels were low with a blood sugar of 453; according to Children's Memorial, they were non existant with a blood sugar of 193.

My stomache ache disappeared in about a month and a half; my sense of taste improved drastically, beginning about a week after diagnosis and continuing for months. Ketones disappeared from my urine after about a week.

Current Regimen: I take Lantus in the mornings, and I play with dosages. Sometimes at the end of the month, I find it useful to split the dose and inject it twice daily. My daily dose of Lantus varies drastically, from 10 to 24 units. Today's was 18. I'm wearing an I-PORT at the moment, but mostly I don't wear them; they've really irritated my skin. This is my fourth port. I take Novolog throughout the day. Somedays I take as many as a dozen Novolog shots, somedays I take none. Average is between three and four, for a total average of four to five shots per day. I am absolutely not interested in pumping.

Current Control: Some weeks I'm euglycemic the whole week; other weeks are a merry go round. I drop below 50 almost every week, and below 40 about every other week. I go above 200 most weeks 1-3 times. I go above 300 maybe once a month. My A1c in January was 6.5, and in May 6.3, and I'm happy with those. I am having memory problems that I believe are connected to my hypos, and I'd be willing to trade a point in my A1c to have my old memory back.

Unrelated Diagnoses: I was diagnosed in late 2002 with Sensory Processing Dysfunction, and in late 2003, with Asperger Syndrome. I was diagnosed with Gender Identity Disorder in January 2007.

Other labels I'm proud to wear: Junior at Depaul University. Older brother of four. Disability rights advocate. Election Judge. Designated Reader. Volunteer. Assistant Weaver. Blogger. Jew.


#2

Jonah

That’s an interesting story. You said the doctor told you that you probably had Type 2 diabetes. Why did he say that. I got Type 1 at 15 and the symptoms sounded very similar to yours. It was CLEARLY type 1. Type 2 seems like a strange diagnosis.


#3

She had two reasons:
that I was 17, and she thought that was too old.
that my symptoms had been present in full strength for about five months, and to a lesser degree for almost two years, and onset is slower in type 2.


#4

I’ve been trying the I-PORT and three out of four sites have gotten extremely irritated, and I don’t think I’d be willing to get irritated sites like that.
I’m also put off by the cost (even though insurance would pay it), by the absense of a basal insulin, and by the buttons.
I’m also pretty happy with what I’ve got.


#5

Hi Jonah,

I was diagnosed at age 35 and was underweight (due to weight loss of high blood sugar)…the doctor diagnosed me as type 2 because of my age. It was my nutritionist who kept telling me to go see another doctor because my blood sugars were not improving over 9 months of taking orals and I was still losing weight. I went to a new doctor who took one look at me and started me on insulin that day. He performed the c-peptide test and sure enough, I had the antibodies that proved I was type 1. I was on Lantus and Novalog for 1 year and had great A1c tests - in the 6 range. But I was waking up with terrible lows (thank God I was even waking up to treat them). On more than one occasion I saw my blood sugar go below 30 - once while I was stuck in bumper to bumper traffic on the Dan Ryan in a terrible neighborhood. I called 911 and they talked with me on the phone until I made it safely to a ghetto gas station for a candy bar. My Dr. strongly encouraged me to go on the pump and I resisted. He said your A1c’s look good, but all those lows are not giving you a truly good - healthy 6 a1c…in fact, it was dangerously unhealthy. I was very self-conscious going on the pump. It wasn’t until I volunteered at the JDRF Ron Santo walk at Montrose Harbor and talked to so many other type 1 diabetics who were on the pump or who’s husbands or wives were on it and they were so encouraging…I finally told my dr. I’d agree to give it a try and if I hated it I’d go back to injections. Well, the pump has been great. I have not seen a low below 60 – and it’s very rare that I even see a 60. I am a huge advocate of it. I can take it off if I start to feel low, I can disconnect it an hour before exercising. I don’t have to overeat to compensate for lows anymore. It has really helped me gain good control and be a healthier person. If you ever feel like giving it a try and want more info - I’d be happy to talk to you.