The numbers look excellent.

Or at least that's what my doctor thinks.

I had an endo appointment this morning, and everything seems to be looking good. A1c is holding steady at 6.9%. My meter averages look okay, although they could be a bit better. I've lost 3 pounds. I'm cutting back late night/early morning basal rates to avoid overnight lows and borderline wake up numbers like the pesky 78mg/dL that has greeted me almost every morning this week. I'm going to start using Symlin again at a lower dosage, but if it causes the same problems I'll stop. As we walked out of the office I thought to myself, "I'm pretty good at this whole diabetes thing." After the years of terrible doctors in the beginning of my life with Diabetes, I never thought that I would be able to achieve what I have. I have had 3 consecutive A1c's under 7%, and I usually walk out of my appointments with a smile. Although my management is solely my responsibility, I did not do this all on my own. The DOC has played a huge role in my ability to achieve what I have in the past year. Thank you so much!

My next appointment is in November, and I hope by then I'll be able to share an even better A1c report. I'm aiming to get closer to 6.5%, and with your help I know anything is possible.

PS.
I apologize for such scattered posting these past few months, I haven't had much to say. Although I have not been commenting, I have been reading a lot of DOC blogs. I hope everyone is well! I'll be back soon. Who knows, I might even jump on the vlog bandwagon just to switch things up...

The Office.

Well, I totally under estimated my doctor. But really what else is new? I am so quick to make things worse than they are. He was actually really pleased with my averages, and even called them beautiful. Under my breath I muttered, “No they look like crap.” My A1c went from 6.8 to 6.9, and he said he was extremely happy with that as well. We discussed that exercise was really my only missing link, but that’s up to me to deal with. He didn’t comment much on my insulin intake. I think he’s finally realized that I just happen to require a lot of insulin to achieve better numbers, unlike so many doctors of the past who hesitated to up my intake. Seriously, how can he argue about insulin intake if the numbers are relatively good? We talked about the JDRF walk, and he told us about a fundraiser idea he’s been working on. It involves being dunked for donations! I would pay to see that.

When we went into the exam room there was a chair like the ones used in dialysis clinics. My mom asked him about it, and he basically explained that he will be starting a trial next week that involves 14 days of IV drugs to send newly diagnosed Type 1 into a non-permanent remission, as a part of the Protégé Study. He admitted that if it were his choice he wouldn’t choose to do it because staving it off isn’t quite good enough, but that it would hopefully help on the path to a cure. I thought it was good that he was honest about that, and I actually agree with him.

So the morale of the story is…I am the queen of unnecessary flipping out. I need to look at the broad picture of my numbers, not just the terrible individual ones. I should work on relaxing just a bit.

*10 PM update. After I wrote this post my blood sugar was 55mg/dL, so I apologize for any thing that doesn't make sense.

One...

I’m a day early, but I’m going out of town for Mother’s Day so I have to post this today.

It's time for a blogiversary!

(I looked back and the first post you will see is dated May 11, 2007, but the real first post was May 10, 2007. It's safe to say the first post was completely terrible, at some point along the way I decided to delete it. Sorry! Don't bother reading this blog from the beginning. It's terrible, seriously I wish I could go back and rewrite it all. )

It’s been one year since I decided to share my story with the world. I came to you a scared 15 year old girl searching for something that I could not find in my everyday life. I needed support and reassurance. I needed to know it would be okay. That the years of terrible doctors, doing the best I could, and hiding my disease from the world could be turned around. What I found was something remarkable. A wonderful group of people, who took me in, taught me what I didn’t know, and extended help whenever I asked. I'll never be the poetic eloquent one, so I present...

One Year in Highlights (lots of links in no particular order):

I’ve seen my A1c drop from 10.5% to 8.2% with the help of online resources, asking questions, and actually talking to my doctor.

I turned Sweet 16.

I marked 11 years with Type 1.

I started Diabetes 365, and so far I am 208 days in.

I made the decision to switch to an insulin pump. I was no longer worried about the exterior marker of Diabetes, and I felt I finally had enough knowledge to handle the responsibility.

I learned to drive, and did the responsible thing by letting the MVA know I have Diabetes.

I had my first A1c under 7%, a lovely 6.8%.

I walked in my first JDRF Walk to Cure Diabetes.

But enough about me…

I just need to say THANK YOU! I could never write anything to sum up how much each of you mean to me. I know I'll never feel alone with this disease again. THANK YOU! THANK YOU! THANK YOU!

Please join me...

As I skip down the steps! Sing at the top of my lungs in the car! Jump around in the living room!

Why you may ask? 6.8 is why!!!! Yep that's what my A1c result was today. I mentioned the test here, but I wasn't expecting to be this excited. Thanks to my dedication, the Diabetes OC, and my pump I've set a new personal record. It feels so good. It's (sadly) the best A1c I've ever had. I got a high five from my doctor and he said my averages were "beautiful". Okay I'm off to continue dancing!

Random Thoughts on Super Bowl Sunday.

I haven't updated in a few days. So I'm just going to throw out a few things that are on my mind.

- Tom Brady is not cute. I much prefer the Southern charm of Eli Manning.
- Teenage boys are weird. Trust me this was proven yesterday. My friend Christian decided it would be fun to eat a dog treat while we were all hanging out.
- Who the heck is Tom Petty and why the hell did Justin Timberlake & Janet Jackson have to subject the world to horrible Super Bowl half time shows post "wardrobe malfunction"?
- Playing Scrabulous (Facebook user's know what I'm talking about) when in the midst of a low, might not be the smartest idea. It leads to the creations of many strange and nonexistent word choices.
- Still no sussy for me! Hopefully it will be here tomorrow. It's been so fun watching everyone receive their gifts that I just can't wait much longer!
- Jordin Sparks did not sing the national anthem live (fyi), and she so does not look my sister (my crazy Aunt Jacqui thinks she does.)
- My friend Jordan's little sister wants to be called Tay Tay Mcafee (her real name is Taylor).
- I am stressed out by the Giants first half play, this can be documented by the state of my hair. You see I tend to run my hands through my hair when I get stressed. The only problem is when you have extremely curly hair like I do, you end up looking like Don King.
- I have an Endo appointment on Wednesday. My first A1c since pumping and since August for some reason will be revealed. I'm thinking 6's, we'll see what happens.
- I have a cold and I could be slightly delusional at this time.

Pump Update. Days 14 & 15.

3 days down and diabetes researchers only know how many more to go. So I left you off at the party, which went surprisingly well. Although the pizza sent me way up, because I experimented with a combination bolus and didn’t get it right. But the 265 I hit after the pizza is the highest I have been, so I won’t complain. Saturday and Sunday I woke up to numbers under 150 for the first time since ever. Today I was 203 at breakfast, but I think that is because I have a sore throat. I have definitely learned that when it comes to sites, “when in doubt rip it out!” The Friday to Sunday evening site hurt a bit every once in awhile, but I decided to keep it in. Not a good choice, it is now a little raised, but I am putting antibiotic ointment and band aids on it. If it persists I guess that will be a trip to the doctor, I hate doctors (but that is a post for another time). I had to take the extra insulin pen out of my kit, because I almost did a correction with it out of habit. Not taking shots is definitely the biggest adjustment, not that I miss them. For me it is so automatic to check my blood sugar, do the math quickly in my head, and dial up the pen. No longer am I a human calculator, I am now a professional button presser. I thought it would be hard to trust the pump with the math, but I have actually stopped doing the count in my head already. I cannot wait to see what my HbA1c is at the one month check up. Oh I forgot to mention, tomorrow I get to go to a Stevie Wonder concert. At the time the tickets were purchased we all (parental units and I) thought that it would be better not to leave me alone. Since I would only be on the pump for 5 days. Little did we know the transition would be relatively uneventful. You see my mom really, really loves Stevie and I didn’t want to be the reason why she didn’t get to see him live in concert. So tomorrow I will be rockin’ out to the Motown sound…

Picture time:

Day 14

As I was watching TV Sunday morning, a sad melody started to play from the speakers. Then a little boy said, "My mom pricked my finger". A little girl then said, "And it really really hurt". The scene changed and a little boy said, "I am 11 years old, and my mom says I have had over 11,000 shots." I heard these words and realized that I am one of these kids. That those words could easily come from my mouth too. No child should have to say those words or think about things like that.

There is no cure for Type 1 or Type 2 Diabetes.

Yet.

Day 15

This is our huge bowl of Halloween candy. It has been sitting on our dining room table for a week. As a diabetic, it is not that I can not have candy. I believe you can have anything in moderation. But that is where the problem comes, it is so tempting. I haven't had too much, but I can't wait for the kids to show up and take it away. For me it really is a trick or treat. Trick myself into not wanting it or treat myself with only a piece or two.

There is no cure for Type 1 or Type 2 Diabetes.

Yet.

It's all in the numbers...

First number.

8.2 that's my latest A1c. Down from 10.5! I guess I'll have to go change that on my tudiabetes page. I was congratulated and complimented by the IE. I knew he had a heart, and he said that basically he wanted me to work my butt off so he could feel confident in putting me on a pump. Makes sense, but still it made me dislike him for awhile.

Next Number.

3 or maybe 4, number of days I will be on the CGMS system. Here is the story. First I had my appointment with the IE, we talked shop. Pumps (OmniPod or Animas), A1c, a lipids panel I could "sell on ebay". Then my mom and I left to have lunch. Went back to the office, met another diabetic boy who was a year older than me and was going on the CGMS because he hasn't been waking up during night time lows. We did a little tutorial together. I made him go first, then I went and almost passed out. I am a "passer-outer", everything and anything I get lightheaded. I think it was more the nervousness than pain or anything caused by the actual sensor. I would explain the insertion as maybe a finger prick to the surface of your stomach. A little sting that stays with you for a couple of minutes and then its gone. The tape is worse than anything. It feels all pinchy.

The process went like this, insertion,review removal, start the one hour warm up. I got home the warm up timer went off, I was supposed to calibrate. I washed and alcohol swabbed my finger got a reading, entered it. And got a CAL ERR message, I went through the clearing and re-entering process. CAL ERR again this happened 3 times, I called the help line. The guy told me to wait awhile because continuing to re-enter could cause the sensor to fail. So I waited a bit, and did it again. The rep would inserted it said after every error clear you should check and re-enter but that contradicts what the guy on the helpline said! Ugh! So I just called again and had a more helpful person. She said to just turn it off for 3 hours to get the sensor completely saturated with body fluids (um okay?), then try again. So much for this being an easy process.

Here are some pictures:

The Monitor Shower "Paks"

< Sensor and ridiculous amount of tape.

A letter to Diabetor.

Dear Diabetor,

Every once and awhile you get me down. Like when my mom says, “I feel guilty when I hear those shots click and they are keeping you alive, and there is nothing I can do to make it better.” When I think of the numbers: 9 shots on an easy day, 14 on a bad day, 12-14 tests a day, almost 11 years as my sidekick, 10.5 that embarrassing A1c that won’t budge, my weight thanks to the shit load of insulin I have to take, the money it takes to maintain you, carb counts. Did you know that if I want a pump it means I will have to forgo the braces? Yeah, you suck. The hiding I’ve done because of you, only recently have I taken both feet out of that “Diabetes Closet”. When I think of the responsibility I have because of you. Most of my friends know what carbs are, but they don’t find ways to stretch a meal so they can have a bit of everything. I don’t save room for dessert, I save carbs for dessert. I’ve found ways around having to get a shot to eat something. You made me wish for lows for those years when you wouldn’t budge from those mid 200’s. And now that I have them again, I hate them! I wish you would play fair. I wish you would give me a break. But I know that that will probably never happen. I have to find a way to get on your good side. I try not to fight you, I try embracing you, but it’s hard when you act like the preteen that you are and want to be independent. I’m working overtime and you my friend are tripping me when I am leading the race. I wish you would stop. But until we find a way to make peace I’ll see you every night at 11, 1, and 4. I’ll push you down with insulin, I’ll log your every move, and fight my way to be number one and put you in your proper place. I won’t give up. I won’t let you do that to me. Unlike with other things in my life quitting is NOT an option.

All the best,

-Jillian

Endo Update

Yesterday, I had another appointment with my endo. We discussed the patterns I've been seeing with my readings, and he complimented me on being able to find these trends. He also said he didn't think it was possible to test as much as I do, I'm just a little OCD about it. We decided that in September we would talk pumps, after an A1c and other blood work. I think he feels that with just adding the Symlin we should wait it out to make sure I'm stable with one thing before moving on with anything else. Altough I'm sick of shots and I think a pump would help, I kind of agree, I'm seeing amazing numbers with a combination of the Symlin and finding the times where I start to climb with my blood sugar. So I have been able to curb really high highs with a quick preventative correction. The only thing is that it requires adding 2 more injections a day one at 1AM and one in the mid afternoon. So maybe that will be another way to get him to agree a pump is something that will work for me, since adjusted basal rates can eliminate these spikes. Oh yeah and I lost 5 pounds!!! Score! So all in all it wasn't too bad. So maybe that September appointment will bring a fabulous medical Birthday present!

I'm also very excited because I should be on the Diabetes Daily Headlines now!

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.

A Better Day...

Than usual that is.

My numbers were in the low 200's all day until now when I checked in at 158 (before dinner reading), which for me is amazing. My mom and I did our good blood sugar dance, which doesn't occur very often. Earlier in the day I corrected when I was at 258, which is against my endo's advice. I've been doing this more frequently in the past 2 weeks, after seeing one of my doctors assitants (we didnt even talk about correction we didnt really talk about anything except for how bad my numbers are, but she didnt give me any advice on how to fix that, I hate when I have to see someone other than my usual endo) and then discovering forums and blogs in the OC. I decided that I would be willing to try anything to get myself to an HbA1c of 9 or better (kind of a statement of defiance to my doctor and his assistant that I can reach the goal they set for me, and I'll do it my way). But I don't care because my doctor has previously said I should correct over 300 which seems stupid to me to let it get that high. Maybe I'm wrong, but I've learned that sometimes you know your diabetes better than your doctor.
I've decided that searching the internet for information about diabetes is sometimes very depressing. Complications scare me the most. I'm only 15 and thankfully I care about getting my disease in check, but it still isnt in control. I have great eye sight, no foot problems, kidney issues, etc. But I know that if things dont change with my control its all going to end. I'm lucky now, but how long will it be until my luck runs out? These are things I have started thinking about lately. Not in a morbid way, but in an OMG I have to get my $#!+ together soon. I'm working with this disease now, not letting it walk all over me anymore!

I'm going away for the weekend to visit my grandparents for mother's day with my mom, so I'm sure my numbers will be out of wack since I wont be following my usual schedule. More when I get back I guess. My life is boring. Happy Mother's Day to all the mom's out there!