Friday, June 29, 2007

Forums!

I have a follow up appointment on Monday with my Endo, because I have been on Symlin for a month now. When I go I would really like to discuss pumping even though he seems to be not so sure about it. So I posted some questions on Children with Diabetes & Diabetes Daily, any feedback here or or on either site would be really helpful. The following is a copy of what I posted.

I have a few questions about insulin pumps, but first I will give you a little history about myself and my diabetes.

I am 15 years old and was diagnosed 2 days after my 5th birthday, so 11 years this September. I have never been on an insulin pump, always MDI, starting with R and N and only to shots a day at diagnosis (1996) to a minimum of 8 injections a day including 3 of Symlin, 2 of Levemir, and 3 + of NovoLog. I have had many doctors one of which was what I like to call a “pump pusher”. At every appointment she was pushing the pump to me (around the age of 10) when I wanted nothing to do with it. 2 years ago I switched to a doctor who is very progressive with putting younger kids on the pump and has discussed pumps with me, but I was not ready. Now I have been investigating them as he suggested and the only one I would ever use would be the OmniPod. The only problem is that he wants my A1c under 9 before he will put me on any type of pump, but unfortunately nothing we have tried (Lantus, Levemir, and now Symlin) has been able to get me to that goal. Mostly now because I am still waking up extremely high, even though using the Symlin usually keeps me in range during the day. I am wondering if your doctors had restrictions like this before putting your children on a pump? I thought that pumps were to proven to help lower A1c’s? Would a pump possibly solve my problem with long acting insulins (Levemir and Lantus) and waking up high? Any ideas and opinions about how to get my doctor more on board would be greatly appreciated.

Thanks in Advance.

Tuesday, June 26, 2007

Driving, Diabetes as a Disability, and the Wizdom Kit

Buckle up kids, this is going to be a long ride.

Driving! I got my permit, and let me say that people of the road be nice to people who drive slow! Double yellow lines mean NO passing, I should know it was in the Driver's Handbook! So far I have only been driving around my town, I refuse to go on any main roads, which include US Route 1. Basically I am very afraid, and to add to that other drivers are extremely inconsiderate. The first drive produced a stress induced high of 277 (not that bad but still I blame this on the passers and speeders). The third a low, I was with my sister and as we got close to our destination (the local library) I said "I'm getting low but I can make it to the library." We get the library safe and sound and I'm 59. Well at least I know I can stay focused if absolutely needed, although I don't ever want to drive and be that low again. So far so good. Watch out DC Metro Area. Jillian is permitted to drive!

Diabetes as a Disability? After the lady at the MVA accused me of wearing contacts, which no I don't thank you very much. Sorry to tell you that my 20/40 vision is just a gift from the health gods, even though I have all the odds against me genetically and because of the D. She said, "Do you have any disabilities?". My response was, "Well if you consider Diabetes a disability then I guess so." Ugh I thought this wouldn't come up until December! So she proceeds to fill in some paper work and then says that she is going to have trouble finding the MAB (Medical Advisory Board) paperwork (like its a huge joke) and we even heard another clerk laugh. So if they don't feel like it's a big then why since I have diabetes do I have to fill in a small stack of paper work get a doctor's approval form, and I am still going to be reviewed when I complete all of the paperwork. No only does this paper work ask for D details, but questions about other members of my families health. Even as far as asking "Have you ever felt life is not worth living?" umm HELLO I think the majority of teens especially girls have thought this at some point. So my question is why because I have diabetes do you MVA MAB get to dive into my personal life with things that are completely un D related? And plus I don't think my Diabetes is a disability at all.

The ADA WIZDOM KIT I wish they had these when I was first diagnosed or even just in my earlier years as a diabetic. The kit comes with an assortment of fun learning tools for parents and kids. A book for "Parents Only" with tips on coping, insulin injections, diet, etc and a similar more kid friendly and fun illustrated book for the child with diabetes. A pen, Juggling balls (with instructions) which represent the 3 parts (food, medication, and excercise) you have to juggle as a diabetic, a picture frame magnet with little phases to make sentences about living with diabetes, an advocacy postcard, an insulin administration guide, a dvd about the daily ins and outs of diabetes care for newly diagnosed kids and teens. Anyone out there that has a kid with diabetes, even if they are not recently diagnosed should look into getting one of these kits. By the way they are free!

Thursday, June 21, 2007

One of Those Nights.

Last night I tested before I was to take my Levemir as usual. Came in at 295, so I corrected with my Novolog, took my Levemir and tried to go to bed. But for some reason whenever I correct before going to sleep I am restless beyond belief. I get out of bed, walk around the house, get a drink, lay down, sit up, throw the covers off, pull them back on, I'm hot, and then I'm cold. I'm pretty sure it's because I'm aware of the some what rapid drop, because about 60-90 minutes later I was 165.

On another note, I'm going to take my learner's permit test today!!! I know I don't have to disclose the D for this, but when December rolls around and it's time for my provisional license test I have to have some kind of doctors note thing. I guess we will cross that bridge when we come to it. I just hope I pass today!

As some of you may know from a previous post. My older sister (22) has Systemic Lupus, which she was diagnosed with as sophomore in high school (my age now), after many misdiagnosises. Seeing as this is also an autoimmune disease, I was wondering if anyone out there had any advice on where to find something like the D-O.C. , diabetesdaily.com, childrenwithdiabetes.com, and diabetes123.com (among many others) except for people with lupus. We have both been looking around and all we can find are really sick and depressing people. She is looking more for encouragement and hope, like what I've found with the D-O.C. Any advice would be greatly appreciated.

Saturday, June 16, 2007

I just realized..

I am on The Diabetes O.C. Latest News for June 7th! Thanks Allison. That's really all I wanted to say for today. Happy Early Father's Day to all you dad's out there! I will be in the land of no computers (my grandparent's house) for the weekend so I figured I should say it in advance.

Thursday, June 14, 2007

Symlin Success and Free Meters!

So it's been awhile but I was just trying to wait out blogging until I had some good news. And guess what !? I have some! My average reading is down by 50!!! And almost all of my readings have been in the 100's since I reached the maximum 10 unit dose of Symlin. At first I was convinced that this was just another thing that wouldn't work for me. But once I reached 10 units after increasing by 2.5 units every 3 days (starting at 2.5 then 5 then 7.5 and now 10). It has been amazing! I never thought I would see numbers like this without alot of work. The only thing that sucks is the fact that I can barely eat which has landed me in a few lows after meals, because I inject for a certain number of carbs, even though I am cutting that dose in half. There are some meals where I can barely eat a thing and so I end up bottoming out after. No severe hypos though which was my biggest concern. I did have some nausea starting out, but now it has subsided. I don't even mind the added injection, although it dose take more time. They really need to come out with a Symlin pen! That would be AMAZING!!! All in all Symlin may just be my miracle drug, but who knows it might not be for everyone.

Check out the new One Touch Ultra Mini (I'm sure you have all seen the commercials) take the survey and you might be eligble to get one free in any of the colors or an Ultra2. I got the pink one!

Friday, June 1, 2007

Highs and Lows.

And I don't just mean blood sugar. No more meter issues yet. Yesterday I had a low of 56, which felt like crap. It happened after I did some excercising then hopped in our pool to cool off. I checked in before I started at 220, which usually means I can excercise and it will come down. But never down that far. I was floating around when I said to my mom "I think I'm low", the sad thing is if she hadn't been there I don't know if I would have been able to get out and what the outcome would have been. And then I turned into the hypo hoover, first a few ounces of soda, then a handful of chips, then I settled on eating a hot dog so I wouldnt be overloading on carbs. I can't stand how hungry I feel when I get that low. It's like rationally I can't just wait a few minutes for my blood sugar to come up, it's more of a "me want cookie" Cookie Monster syndrome.

Had an Endo apppointment today. Even though my HbA1c is now 10.5 up from 10.3 a month ago. The appointment was way better then the usual ones are. I was way more vocal and my mom took the backseat so to speak. We decided to try Symlin in addition to my current NovoLog and Levemir, except I will cut back my NovoLog by 1/2. This is the first step on a plan we made of trying new things to get in range, but hopefully it will be the only one we need to make. The benefits sound pretty good: less insulin, less post meal spikes, and possible weight loss. My doctor has been asking if I wanted to try this for awhile, but I was just not upto extra injections. But now I'm not going to let that get in the way of better control. So here goes nothing.