Summertime and the blogging isn't so easy.

Well it's been over a week...there are things I could write about, but I don't have enough time to get my thoughts together. You see my friends got out of school this past Friday. Since then it's kind of been non stop socializing and you know how that goes. So for now I've only got a few bullet points to keep you up to date.

• I'm over my pump slump.
  
• Took the SATs on June 7th. In an attempt to avoid lows I reduced my basal rate a bit, and ended the test at a cloudy 309...no wonder that last math section seemed like a foreign language. I'm hoping I still pulled off the score I was aiming for, because I really do not want to go through it again.
• Made it to day 235 for Diabetes 365, and then I just stopped taking pictures... I'm not really upset about it, and I'm not going to start up again. I never really felt like I was accomplishing the right goal/ any goal at all with the project. I also felt like highlighting Diabetes so much was not doing me any good. So I give up. I guess I should go tell them.
• In the past few days I've been slacking a bit with school, but I've got a goal and I'm going to reach it. By this time next year I will have that diploma in my hand!
• It's been ridiculously hot here. Like really really really hot! Seriously, I was sitting in a restaurant with my friend and the sign at the bank across the street said 110 degrees. Oh and if you don't know about the humidity of an East Coast summer just take my word for it. It's rough!
• Yesterday, I went swimming for the first time this summer. I completely forgot about putting my pump back on after 2 hours. I got caught up in conversation with a friend...4 hours after my disconnect I was 406mg/dL. I've learned my lesson.
  
• Oh yeah I also never told you my final thoughts on the KeyNote meter...in a few words. I'm not a fan.
  

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!

They like me, they really like me!

Have you been over to the Diabetes 365 pool lately? I'm on day 157. The picture at the bottom of this post is day 150. I'm not sure why, but it's been chosen as a favorite by 9 members of flickr. I was also invited to add it to a group called "That's Bostin"(no idea what it means), but there are a lot of amazing pictures in that pool as well. I just thought I should share it here too.



Having Type 1 Diabetes can make a person feel different. It's not so easy to blend in when you need to test, take shots, or wear an insulin pump. Your life can revolve around food, numbers, and the idea of looming complications.
Sometimes it's hard not to see myself as that lone tiny lavender colored crocus surrounded by the strong deep purple ones. But I can always turn that statement around. I can remember that although diabetes makes me a little different, I am still beautiful in my own way like that tiny flower.

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

Yet.

I've got nothing.

Well apparently my creative writing well has run dry. I've got no diabetes related stories, general life drama, or fun links to share. So excuse me while I take brief break to look for some writing inspiration. I think I really need to get out of the house more...then I'd have something else to say.
Until I return, I'll leave you with this photo from Diabetes 365.

Day 141 (3/3/08) The little things.



Today it's a warm 65 degrees, and I found this lone crocus in our backyard. It reminded me that sometimes when dealing with diabetes or any other chronic illness, you can get caught up. There are always thoughts of the overwhelming numbers, aiming for control, looming complications etc. Sometimes it's hard to appreciate small wonders.

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

Yet.

Saturday Sussy!

My sussy finally arrived! It was from my wonderful buddy over at Diabetes 365, Daena. She also has a blog, if you want to stop by and take a peak. Daena lives in Singapore, so that's why it took so long. It was definitely worth the wait though. She sent me a bunch of little goodies that I'm already enjoying. Note cards, stickers, sticky notes, Band-Aids to replace the Hello Kitty ones I use for site changes, mini clothes pins, and paper for the cards and other crafts that I make!





Here are a few pictures of the sussy I sent to Lauren (largar) from Diabetes 365.

I've really enjoyed this whole thing. It's been a great way to get to know the interests of members of the communtity and it's definitely brought us a little closer together. So a big thanks Beth & Amylia! Oh a heads up to participants, there is a great thank you coming from the lovely Sussy Circle ladies. I've already received mine and I LOVE it!
Enjoy what remains of your weekend!

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.

Diabetes 365 Update.

Day 27 - User Error

Day 28 - Bubbles, Bubbles...

Day 29 - Light Day


Day 30 - The Baggie


Day 31 - The Best Laid Plans


Day 32 - Public Enemy # 1


Day 33 - The Craft Lair


Day 34 - Happy Birthday


Day 35 - All Clear


Day 36 - MVA MAB


Day 37 -Moments


Day 38 - Basic Black

HAVE A HAPPY THANKSGIVING!!!

Pumping at a Party.

The party Saturday was pretty good. It was for one of my best friends, Kelly's 17th birthday. She will actually be turning 17 tomorrow. Like I said it freaks me out that I have a friend who is 17! For some reason I still feel like I am in 8th grade. Kelly came to pick me up a little before 5 o'clock. Then she drove us back to her house, which is less than a mile away, to let me see the decorations and to alleviate those hour before the party jitters. I should mention that I haven't seen her since I started pumping. She didn't notice for almost half an hour. When she spotted it, she asked "what's the deal with that?". I explained to her that it was an insulin pump, and instead of taking a bunch of shots every day this would replace 2 of those long acting shots as it "pumped" tiny "shots" of insulin every 3 minutes and then every time I wanted to eat I just punch in a few numbers and it gives the right amount for the food. Kelly is not very mechanical and isn't all that knowledgeable my diabetes care, so I tried to make it simple. You may be wondering why I have best friend who doesn't know a lot about my diabetes. It's just because Kelly is not the type of person where diabetes is going to matter to her. She knows enough about it; how to tell if I'm low, check my sugar, she has seen me take shots etc. I think she was just disappointed that she can no longer jokingly pretend that I do drugs. She also commented that I just looked like a lady at the mall "countin' my steps on her lunch hour".
This is dress I wore:

I'm not sure if you can see it, but there was belt around the waist and it is also a wrap dress. So I ran the pump tubing from my site (on my abdomen) through the interior slit, across the front, to the exterior slit. Then I clipped my little buddy Orin on to the belt on the same side of the exterior slit and we were ready to party! (I hope that all makes sense.)With the pump at my side and close to the slit, I was able to not have a lot of tubing exposed. It was also easy to access to bolus for dinner & cake, as well as enter blood sugars, and make corrections. I topped out the night at 187, which I didn't think was that bad considering all the hooplah.

I haven't posted my Diabetes 365 pictures in awhile. I'll be back tomorrow with those. In the meantime why don't you check out the pool, there are now over 800 pictures.

WDD...

I don't exactly know how I feel about all the hoopla today. On one hand I am excited and happy, that the UN is recognizing what today is, and I know that is a huge deal. But then the pessimistic side of me wonders, if the focus on Diabetes in Children and Adolescents is really going to be enough. Is one day focusing on that theme going to be enough, with all the confusion out there about the types of diabetes? I know I'm lucky to be able to have certain access to technology to help me control this disease. But I don't want to control it, I want it to go away. Not just for me, but for the countless kids all over the world who have been diagnosed, those who are yet to be, and those who might never be and will not be treated. I don't want this day to pass by and then have the month end, and where will we be? Still waiting for a cure. I don't really know if this is a "Happy" World Diabetes Day. I would be happier if there were no such thing as diabetes and then we wouldn't need one stinking day of the year to be heard. In my world everyday is a World Diabetes Day, and until there is a cure it will remain that way. The day is young, and I guess I will just have to wait and see what happens...

I don’t know how to explain it.

But I’ll try. Last night I got into verbal argument with both of my parents, separately. (There goes my perfect teenager image.) The first time it was because I overheard my father talking about “the way I talk to adults” and that he isn’t having it anymore. So I flipped out, because this is a line he uses all too frequently. There is an extremely long back story to why I flipped out, involving the fact that my father is bi-polar. As a result he wasn’t involved much in my childhood, although he has always lived in our house. Because of his emotional unavailability and an incident that occurred 2 years ago, our relationship (or lack thereof) is very volatile and there is an admitted lack of respect that goes both ways. So anyway I said a lot of admittedly disrespectful things, but I was angry and I could not help it. So he ended up leaving the house. I then said more admittedly to her. It all ended badly and is yet to be resolved. I don’t even know why I am telling anyone about this. It is just that today I had one of those days where everything felt completely wrong, and I didn’t have any way of fixing things. I could cry about it, but I couldn’t talk to anyone. I told my sister but that was just worse, because she is studying for law school exams and the last thing she needs is for me to burden her with this.

Then to top it off, for some reason because of my Diabetes 365 picture today and the responses I got from it. I got upset. I felt like all of my diabetic life I was short changed. I had diabetes for all 11 years of my life in traditional school. I only had 3 weeks in school without it. But guess what I never had? A 504 plan or anything like it. My parents never even knew about them until my sister got sick when I was 7, and still I never had one. No one ever told us they would be appropriate for a child with diabetes. Not a doctor, not a school nurse, not a guidance counselor. Thankfully I never needed anything special for my diabetes while in school. Yes, the trips to the nurses office where tedious and I thought there had to be a better way. But what did we know? We asked for change and still no one told us what exactly we needed to do. No one ever gave my parents the guide for diabetes and school (does it exist?). This got me thinking. How many kids out there have any type of disability that could require special adjustments or protocol while in school, but their parents are under informed or are told that nothing is available to help? I’m upset about this, and it doesn’t even matter for more me anymore. I no longer attend traditional school. I’m upset that little me went to school every day with diabetes and something could have been different. But I am more upset that there are probably a lot of kids out there like me who are not being helped. I have no idea where I am going with this like I said it’s just one of those days…

Picture Time! Diabetes 365 Days 23-26

Day 23 - Lows




Day 24 - Making Connections




Day 25 - The Remains




Day 26 - Awareness




I don't have one for today yet...

To see other contributers check out the Diabetes 365 Pool

Diabetes 365 - Days 19 - 22

I owe you some pictures:

Day 19

Day 20

Day 21
Day 22

Diabetes 365 Days 16 -18

Playing a little catch up!

Day 16 - Everywhere I Go

Day 17 - Fishy Lows
Day 18 - Difficult Food

For the descriptions check out the Diabetes 365 Flickr Group.

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.

Day 13 - LBDB

Today's Photo:
Since I am now using an insulin pump, my CDE suggested that I carry extra pump supplies. She said to use the at least one of everything rule. At least one infusion set, 1 insulin cartridge, an extra battery, a few syringes, IV prep wipes, and my current vial of insulin (depending on the weather), and extra test strips. Some people have little black dresses, I now have 3 little black diabetes bags.

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

Yet.

So the party was fine, no lows, no over eating. All though I was tempted by the towers of pizza I stuck to 2 slices and 2 pumpkin cookies that I made with Splenda. Everyone had a good time. Only one person asked about my pump, and she thought it was my iPod. I told her we would talk about what it was some other time. I wasn't super comfortable disclosing my diabetes in a group of people where I only know a few very well. As the only people at the party who know I am diabetic are the girl who asked about it, who also happened to be the host, and her mom. I just find it very annoying to have the diabetes spot light shone on me, and I didn't want to hear any of that "my grandma has diabetes crap". I also think if it had not been my first day on the pump I would have been slightly more comfortable giving that standard, I have type 1 diabetes education session. Pump post and double picture day Monday! Have a great weekend.

Busy Day & Awesome Beth!

Well today is going to be very busy from my insulin start, to a Halloween party, to celebrating my dad's birthday. I have already taken today's picture and of course it has to do with the starting my pump, lets just say that I am truly a Type 1 Diabetic and it shows in the ketones. After being told not to take my night time dose of Levemir last night, at 6am this morning my blood glucose was 172 (thanks to a supplemental correction shot at 3am), but I was already spilling trace to small ketones.
Well Beth has done it again. Not only did she start the wonderful Diabetes 365 Project.
She has now created a website for the project!
Happy Friday All!

A Real Post & A Picture.

So I promised you a real post and here goes.

I have been wearing my Cozmo insulin pump for 3 days now. In that time I have learned a lot of things about myself and my new buddy Orin. While I am only pumping saline as a part of what I guess my endo would call "home training" it still is pretty realistic. I definitely think that being young has it's advantages when it comes to using a pump. For instance if this was my mom pumping she would have to pull her glasses from a top her head squint at the screen, and call me to help her. If it was my dad he wouldn't even try and I would be completely in charge of helping him manage this device. I know these things because my mom can't use the remote to our television, and almost every time my dad tries to print something off of the computer he calls me to help him.
What have I learned? Well for starters, infusion set insertion is not the horror I imagined. I sat in the endo's office clenching my teeth through the training in anticipation of inserting the infusion set. Turns out it's a piece of cake. The office's pump trainer was very impressed that I knew so much about the pump, but I guess that's what happens when you have a lot of time in between receiving it and going to training. It only took about 45 minutes to go over everything. At one point she was asked, "Can I at least peel off the adhesive protector on the set so I can feel like I am doing my job?" What else? Oh my dogs are very intrigued by the sound of a bolus. That click click click, has them both staring at my hip in wonder with their heads cocked to the side. Sleeping hasn't been to hard, I just place the pump next to me and it usually stays put. When I am alone in a quiet room, that hiss every 3 minutes as my basal rate is delivered is like a constant reminder that the pump is there and working away doing something my body should be able to do without any noise at all. I will have to say that being a perfectionist is probably not going to help me in this. I am going to want everything to go right, from intial basal rates, blood glucose numbers to every single site change. I will get over that slowly. I messed up tonight will loading the new cartridge and doing the new infusion set. I was so upset for no particular reason except that I like things to go right, and when they don't it seems like the end of the world (ANXIETY). Thankfully my mom was there and told me just to breathe, and I know over time it will become even more routine. Until then I'm still working out the kinks and finding what works for me. Now I just have to get to Friday, so I can start the real deal!

Check Out or Join Diabetes 365.

Day 9 - Sneaky D.

Diabetes has a certain way of showing up where it is not wanted. As I was putting away laundry today I found a tiny spot of dried blood on the waist band of one of my skirts. I assume it happened when I gave myself an injection under a table in a restaurant. At the time I never noticed any bleeding. I hope I can get the stain out, otherwise it will just be another constant reminder that I am a person with Type 1 Diabetes. In order to take care of myself I have to take injections of insulin. Sometimes this means little spots of blood will show up in unwanted places.

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

Yet.

If you can't see the little spot click on the picture or check it out at the Diabetes365 Group on Flickr where I added a little note to point it out (don't forget to see my pictures you have to sign in).

Day 7 - Message in a Bottle.

As a person with diabetes, insulin injections become a routine part of life. I have been a diabetic for most of my life, 11 out of my 16 years. This past week marked my last complete (Monday to Sunday) week of multiple daily injections. This photograph is of a water bottle filled with every pen top needle I used this week and the 4 insulin pens I finished ( I had a few half used ones in my fridge, they won't be any good to me by Friday). This is only a part of what I do every week to control my diabetes.

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

Yet.


10 AM Tomorrow, Pump Training and Saline Start!!!

Day 6 - Waiting

I received my Cozmo Insulin Pump in the mail over 2 weeks ago. Unfortunately because my doctor's office didn't have any available appointments until this Monday, I have 2 boxes of pump supplies just waiting in my living room. I never thought I would be someone who wanted to be on a pump. Now that I feel that pumping is the right decision for me, I can't wait until my appointment Monday. An insulin pump is just one of the insulin delivery options a person with diabetes has. Pumping is not right for everyone, but at this point in time I feel it is right for me.

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

Yet.