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.

This one is all over the place.

First of all, Happy (Belated) Mother’s Day every mom!
Being a mom is one of the hardest jobs on the planet, and you deserve more than just a single day of recognition.

My thoughts have been extremely tangled lately.

School work has been the main priority, and that of course causes me to think about my future. When I think about my future there are three things that always come to mind. The first is somewhere along the lines of, “I can do this. I’m really making progress. College is really an attainable goal.” The second is more, “What if I can’t do this? It will never be enough. No college will ever want me. I’m a failure. My life sucks. I look like absolute shit on paper.” The third and hardest to think about is the fact that no matter what happens with my academic career, I’ll be watching my friends from the sidelines. I won’t have a graduation ceremony with the white robe and the smiling family in the stands. If I decide that college isn’t the right path, or I don’t feel that I’m ready, I’ll have to see my friends go off into the sunset leaving me behind. It’s hard to even write this. I guess most of all I’m just so scared that it will turn out that way, even if I do everything I can for it not to happen. The circumstances surrounding my decision to start distance learning were difficult to deal with, but now it’s even harder when thoughts like this make me doubt the choice I made.

Tomorrow I have my quarterly endocrinologist appointment. I had blood drawn last week, and I know for a fact that the results are not going to be good. If they are I would be completely surprised, and I would feel undeserving. I can see my grip slipping, and the proof is on my meter. My averages have started climbing up reaching the 140’s. At first I was writing it off. It’s stress, that time of the month, or just a fluke, but it’s gotten worse. I can see patterns in my eating habits, lax in my corrections, no logging. I’m not beating myself up, I’m acknowledging my weaknesses. I’ll get it together, I have to. I just hope that my endo doesn’t rip into me. That’s not really his style, but you know how easy it is to expect the worst the night before an appointment. If he mentions anything about my weight or how much insulin I’m taking, I can already see myself crying about it. I would appreciate if he would offer better solutions than taking Symlin or exercising more. He always says things like, “Your weight is up” or “You sure do take a lot of insulin,” but he rarely offers more than those few words. I want to scream at him, “Would you like me to start cutting my insulin?!” If I wasn’t as obsessed with striving for good management, I could see his words driving me to a bad place with my control. I know he means well, and he’s actually one of the best endos I’ve ever had, it’s just frustrating sometimes.

So until tomorrow…

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.

Whoops.

I feel like I left you guys out in the rain. I said I would be back Friday with an update, and now it's Monday. (Could I have used "I" more times in 2 sentences?!) Any who. The doctor's appointment went fine. I was the first patient of the day, so I was seen within 10 minutes of walking in the door. Dispite the fact that the heat was broken in the office, my CDE seemed happy to see me. My doctor was also extremely impressed with my progress. I only gained 3 pounds which I'm fine with, because my doctor said he has seen patients gain about 10 in the first month. He commented that I was still on a lot of insulin, and he wanted to know if I would think I about Symlin again. I adamantly said, "no, it made me feel way too sick." He didn't fight me on this, which is typical, he likes to give gentle suggestions and let me find my own conclusions. He filled out my MVA medical review papers, and reviewed a few rules he feels are important to insure safe driving with diabetes. I'm hoping that with comments like, "Jillian is extremely responsible," I will get speedy approval. The good Doc even mentioned that there will be a low A1c celebration when I go back in February. So now I will impatiently wait until then, to see what will hopefully be my lowest A1c ever. On our way out, my CDE asked me how Diabetes 365 was going. For the answer pop by the flickr pool and have a look.

Oh yeah, I'm proper people sick and it sucks! See ya later alligators.

Quick question.

I'm heading to my Endo on Thursday for my 1 month pump check-up. I have a quick question for anyone who uses Animas supplies (Insets). I'm coming upon my first reorder towards the end of the month, I want to make sure to do it before our insurance switches to CIGNA in January. So say I wanted to change my cannula and tubing length, do I have to get a new prescription when I go the Dr. on Thursday to do this? Or can I just change what I want on the website ordering thing, and the insurance company will be billed without a glitch? I'm sure I can have my mom call to ask, but I figured I would ask here too.
I've been having a boat load of overnight lows so I have been tweaking my basal rates, we'll see what happens. Expect a pump and doctor update Friday.

Day 8 - Plastic Pancreas

Today my mom and I went to our pump training session at my endocrinologist's office. If you had asked me even a year ago if I would consider an insulin pump, the answer would have been NO! Over the past few months I have realized that the pump would be the only true way for me to mimic what a normal pancreas should do. A pump is not the right therapy for everyone. An insulin pump is not a cure, it is only another delivery method. I will wear the pump for 4 days with saline, to get used to this new method. Then start on insulin this Friday. In the meantime I will still be taking multiple daily injections. I do not need this device because I have a "bad case of diabetes". I hope that I do not have to be on a pump for 11 years like I was on multiple daily injections. I hope a cure comes sooner. But until there is a cure this is what I will do.

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

Yet.

From Penny & Bernard, go write Ellen a letter suggesting she feature something about November being Diabetes Awareness Month and November 14th being World Diabetes Day on her show!
I can't write her because I am not 18, but I will ask my mom to do it for me!

Decisions, Decisions!

Fun birthday! Lunch with the parentals, test drove some cars! Well okay I wasn't driving them, my dad was...but whatever. Looks like when the time comes I will be getting a Scion xB, you know the little box car you see scooting down the road, dream car number two. The first dream is a Mini Cooper, but that is out of the price range. So we get home from a wonderful dinner, and there are a few birthday messages on the answering machine. Along with one from the good old Infamous Endo, "Hi this is Dr. Infamous, I just wanted to make sure you really want to go with the Animas, okay thanks call me back so we can talk about it!" Okay Dr. Infamous, you have already planted seeds of doubt about my Animas dreams, I sent you the paper work to make sure... And then you call. So okay fine fine. I look it all over again. Go to the websites, look at the comparison chart. Fine tomorrow we will send in the Cozmo one, to tell you the truth I only didn't want it because I wanted the color screen of the Animas. But it is stupid not to go with a pump that basically will do the same things for me, covers my major concerns (waterproof, luer-lock, 300 units). So what is this change of heart number 45!? Well I guess with age comes wisdom! Cozmo it is!

PS. Thanks to everyone who wished me a happy birthday it means alot. I haven't been returning comments, but I will get to everyone individually! Good Night!

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.

T-Minus 1 day-ish!

Until the CGMS and doctor's appointment, suprisingly I am not nervous for it at all.
I just wanted to say Happy Labor Day to everyone! I have been very inattentive to my comments, I will catch up on those soon. My blood sugars have been pretty good minus those wake-up/breakfast ones after nights when I sleep through the 3 am alarm. I had a great weekend of good numbers while away at my grandparents house, which is extremely unusual. This is just a quick update. I will be back on Wednesday to talk about my experience with the IE and CGMS sensor insertion.

I was going to wait....

But I felt this needed to be shared. I just got the call from my mom a little while ago.

CGMS Study commences Wednesday, September 5th at 2pm. So basically I will have an all day doctor's appointment. I see the endo at 11:15, then the Mini Med CGMS rep at 2 in the same office. I hope this doesn't mean they will force me onto a Mini Med pump. It turns out it wasn't the endo's fault that this took awhile, the Mini Med people screwed it up. Well anywho now I just have to cancel the driver's ed appointment I had that afternoon, it was supposed to be my last one. I don't mind though, I'll take a step closer to pumping over a step closer to my license anyday.

Where was I?

So here is an update, I have no idea what I discussed last.



We have called the IE twice since receiving the email about the CGM study. No returned phone calls. IE get your self together man. No worries though I have an appointment on the 5th so if the calls haven't been returned by then... Well let's just say my very protective and advocating mother will be making sure our unhappiness is known. Speaking of getting ready for the appointment I have been in contact with our assigned rep at Animas just to keep her up to date on the goings on or lack there of. I have finished reading Insulin Pumping Demystified, and am now onto Pumping Insulin. I also had blood drawn today, not my favorite experience. I was the kid who cried, threw up, ran around the office, or did anything possible to avoid that chair of terror. Now I am just the teenager who as soon as she walks into that little white room, the phlebotomists immediately asks if I am nervous or if I have a tendency to pass out? The answer to both of those questions is YES! But thankfully I didn't pass out today.



I have been having problems lately with the pen top needles on my insulin pens. I will try to explain this to the best of my ability. I dial up the units on the bottom, stick the needle in my skin, press the "trigger" down, a few units go in, and then it jams! At first I thought it was that there was something under the surface of my skin I was hitting and was blocking the needle tip. Then I took the needle out tried a new site and the trigger still would not budge. Put on a new tip and repeat the process everything goes okay. But this has happened a few times and it is extremely frustrating.

Hey! You can now vote for a new Ultra Mini color and enter a sweepstakes (if you are over 18) to win one of 10,000 Ultra Mini and for 100 special people an iPod Nano.


P.S. Kevin at Parenthetic (Diabetic) is back. I just "lurk" over there, and never leave comments. Maybe now I will.

Diabetes Potpourri

Yes I love Jeopardy!

I finally got my copy of Pumping Insulin in the mail today. Something is all wonky with Amazon/USPS Tracking so I had no idea it was coming. What a pleasant surprise to find on the kitchen table. I'm still waiting for Insulin Pump Therapy Demystified. In reading older posts of Sandra's at A Shot In The Dark I found that she suggested them. So I decided to get these to further my knowledge in the quest to pump.

My mom plans to call the IE tomorrow, about the cgms thing he emailed us about yesterday. I can't say how great it is to at least feel like steps are being taken towards the final goal. Hopefully it will happen sooner rather than later.

I'm thinking about doing the JDRF Walk next May on The National Mall. But who knows I could just be a lazy bum and donate money instead.

And finally. If you are an Adult with Type 1 Diabetes. Fill out this survey about a possible conference for Type 1 Adults. You can find more on Allison's page.

Wow alot of links. Get to clicking!

Infamous Endo Update.

Beware angry Diabetic teen ahead:

Still no reply from the Infamous Endo (IE). Curious, very curious. I love the fact that when I sent him an email about he home schooling I am doing so that he could explore it for his kids, response in a few hours. Yet, where my health is concerned I have waited almost 4 days, I mean just a simple reply would work. I am not asking him to answer any questions, just respond! Just because 2 of those days are the weekend doesn’t matter, it takes about 2 minutes to jot a simple reply to at least let someone know you got the email. And HELLO! Email doesn’t just work in the office! Okay maybe I’m being harsh, but you know diabetes is harsh and I am taking a stand for myself. In no way do I think that pumping will be the solution to my all of my problems. I’m just asking for the chance to put it on the discussion table. Diabetor and I are going to be together forever, and I want to know that I have done everything possible to make sure that forever is a long forever not a short one. Seriously, am I asking too much? I really don’t think I am. Maybe I’m just cranky since I have to get up at 3 every morning to preemptively correct my dawn phenomenon. Maybe I just don’t want to deal with 7+ shots a day any more. Maybe it’s because after almost 11 years I finally see this is going to be forever, forever. Not just the next few years. Maybe I just wish this wasn’t my burden at all. But I don’t think I am asking too much for a response! I seriously don’t want my next post to have to be about finding a new endo, but start thinking just in case.


PS. If your suggestions involve me returning as a patient to Children’s Hospital, save them. I’ve been there and done that. Surprisingly IE is way better than those people.

UPDATE 9:35 pm

He emailed back!!!!
"I would suggest that you undergo a 3 day continuous glucose monitoring study tosee if that is indeed what is going on. Call me in the office to arrange."

So I'm done being pissed off.