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.
Wednesday, August 29, 2007
We're All In This Together!
Yes, the title does reference High School Musical.
For most of my childhood and adolescence with diabetes, I was always a hidden diabetic among other kids my age. I think it was the fact that I had no idea what diabetic meant when I was 5 and made the decision that I wasn’t going to share it with others. I remember going to the nurses office in kindergarten and 1st grade alone. I remember snack time in the corner of the back of the class in 2nd grade, I was “fruit roll-up girl”. When the other kids asked why I had a snack in the back, I just ignored them or said because my mom wanted me too. I was not into sharing it, it was something for behind closed doors, in the back of classrooms, and restaurant bathrooms. It took me over a year to tell my best friend (R) who I met in 5th grade. We talked on the phone everyday after school, sat next to each other in every class, and yet I could not share this thing that was a part of me. I was afraid. I wanted to be Jillian, best friend, funny, cool, and creative. Not Jillian the Diabetic. But guess what happened the first time she saw me test? She asked if she could do it too. The first time she saw me give myself a shot, she said, “If you ever need me to, I’ll stab you, okay?” We still joke about this comment. That reaction was all I needed to know it would be okay to tell. I even do shots in front of most of my friends, too. Before I told my mom I don’t do it because I don’t want to scare them. In truth I was the one who was scared. I have another friend (K) who says she likes to pretend I’m a druggie, because it makes me cool. (Yes, K is out of her mind) Who knew “shooting up” in the back of a station wagon so you can eat some ice cream was cool? So whenever I feel it is necessary I tell. I have another friend (D) who I told after being friends with her for 5 years. I know crazy. But I was scared, paralyzed by how different being diabetic made me. You know what she said, “Oh so that’s what the fruit roll-ups were about in 2nd grade.” It didn’t phase her. I can remember going to sleepovers when I was younger. My mom would call the other mom to talk about my diabetes and the fact that she would come over in the morning before breakfast to give me a shot. She would pull up outside, I would run out hop in get my shot and go back inside. When I returned, my lie was usually something like “I forgot to take this pill (for something or another).” I thank my mom so much for letting me keep it my business until I was ready, but making sure I was safe. I thank all of my friends for being supportive, and not living up to my worst fears of making me different or weird. And now I have the OC, who knew virtual strangers could make me feel less alone in this. It’s one thing to have people accept something that is a part of you, but it’s another to actually have people who are dealing with that same “something”.
For most of my childhood and adolescence with diabetes, I was always a hidden diabetic among other kids my age. I think it was the fact that I had no idea what diabetic meant when I was 5 and made the decision that I wasn’t going to share it with others. I remember going to the nurses office in kindergarten and 1st grade alone. I remember snack time in the corner of the back of the class in 2nd grade, I was “fruit roll-up girl”. When the other kids asked why I had a snack in the back, I just ignored them or said because my mom wanted me too. I was not into sharing it, it was something for behind closed doors, in the back of classrooms, and restaurant bathrooms. It took me over a year to tell my best friend (R) who I met in 5th grade. We talked on the phone everyday after school, sat next to each other in every class, and yet I could not share this thing that was a part of me. I was afraid. I wanted to be Jillian, best friend, funny, cool, and creative. Not Jillian the Diabetic. But guess what happened the first time she saw me test? She asked if she could do it too. The first time she saw me give myself a shot, she said, “If you ever need me to, I’ll stab you, okay?” We still joke about this comment. That reaction was all I needed to know it would be okay to tell. I even do shots in front of most of my friends, too. Before I told my mom I don’t do it because I don’t want to scare them. In truth I was the one who was scared. I have another friend (K) who says she likes to pretend I’m a druggie, because it makes me cool. (Yes, K is out of her mind) Who knew “shooting up” in the back of a station wagon so you can eat some ice cream was cool? So whenever I feel it is necessary I tell. I have another friend (D) who I told after being friends with her for 5 years. I know crazy. But I was scared, paralyzed by how different being diabetic made me. You know what she said, “Oh so that’s what the fruit roll-ups were about in 2nd grade.” It didn’t phase her. I can remember going to sleepovers when I was younger. My mom would call the other mom to talk about my diabetes and the fact that she would come over in the morning before breakfast to give me a shot. She would pull up outside, I would run out hop in get my shot and go back inside. When I returned, my lie was usually something like “I forgot to take this pill (for something or another).” I thank my mom so much for letting me keep it my business until I was ready, but making sure I was safe. I thank all of my friends for being supportive, and not living up to my worst fears of making me different or weird. And now I have the OC, who knew virtual strangers could make me feel less alone in this. It’s one thing to have people accept something that is a part of you, but it’s another to actually have people who are dealing with that same “something”.
Tuesday, August 28, 2007
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.
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.
Saturday, August 25, 2007
I am the Examiner!
Apparently I am in the personality company of many presidents. The explanation is actually spot on. Although I wouldn't really think to do many of the suggested jobs. Thanks for the fun Kerri!
Tuesday, August 21, 2007
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!
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!
Monday, August 20, 2007
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.
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.
Friday, August 17, 2007
Just an update.
It's been a while, and I figured I should update those of you out there in blogland. So where was I?
Life without Symlin is so much better. I can actually function after eating a meal! I don't need to carry around that pesky vial or syringes. Only 7 injections in a day instead of 10, not great but I'll take it for now. I'm still really struggling with getting my numbers in range in the evening (8pm-12am). I become so insulin resistant, even the most aggressive corrections do absolutely nothing. I have tried more insulin at dinner, more insulin in between dinner and bedtime, more at bedtime, and sometimes all of those things combined. NOTHING WORKS!
My quest to pump still continues. I have gotten the information packets from each company. Read them all cover to cover, and have been in contact with the different reps. And I changed my mind. I really thought the OmniPod was for me. But I can not stand the fact that my mom has called them, I have emailed, and the response has not been efficent. They only returned one email, and no phone calls. Plus I have changed my mind about tubing, I can do it. It doesn't freak me out any more, after tons of research. Cozmore isn't really for me either, their email response was not very friendly. It was more like our pump costs this much, it does this, pick us. Plus I don't think I would use alot of the features they offer. Minimed, never emailed me back. I don't care about CGMS. So then that leaves Animas, the one that was my second choice to OmniPod. I love their customer service. Heather the representative I was assigned, is amazingly nice, prompt, and doesn't make the emails all about business & making money. I feel like she could be someone I actually know. Plus I love the way the Animas looks, functions, and its waterproof (like the Cozmo and OmniPod) a big selling point since we have a pool, plus it's covered by our insurance 100% after approval. (All of the opinions above are my personal experience and are not ment to influence anyone else's opinions about these companies.)
So after all this research and communication. I decided I should email the infamous Endo, for a little opinion. So I sent him an update on my stopping the Symlin, logging and testing like a maniac, pump research, the night time insulin resistance, and what I believe is the Dawn Phenomenon. I only sent it this morning so we will see what happens.
Happy Weekend Everyone!
Life without Symlin is so much better. I can actually function after eating a meal! I don't need to carry around that pesky vial or syringes. Only 7 injections in a day instead of 10, not great but I'll take it for now. I'm still really struggling with getting my numbers in range in the evening (8pm-12am). I become so insulin resistant, even the most aggressive corrections do absolutely nothing. I have tried more insulin at dinner, more insulin in between dinner and bedtime, more at bedtime, and sometimes all of those things combined. NOTHING WORKS!
My quest to pump still continues. I have gotten the information packets from each company. Read them all cover to cover, and have been in contact with the different reps. And I changed my mind. I really thought the OmniPod was for me. But I can not stand the fact that my mom has called them, I have emailed, and the response has not been efficent. They only returned one email, and no phone calls. Plus I have changed my mind about tubing, I can do it. It doesn't freak me out any more, after tons of research. Cozmore isn't really for me either, their email response was not very friendly. It was more like our pump costs this much, it does this, pick us. Plus I don't think I would use alot of the features they offer. Minimed, never emailed me back. I don't care about CGMS. So then that leaves Animas, the one that was my second choice to OmniPod. I love their customer service. Heather the representative I was assigned, is amazingly nice, prompt, and doesn't make the emails all about business & making money. I feel like she could be someone I actually know. Plus I love the way the Animas looks, functions, and its waterproof (like the Cozmo and OmniPod) a big selling point since we have a pool, plus it's covered by our insurance 100% after approval. (All of the opinions above are my personal experience and are not ment to influence anyone else's opinions about these companies.)
So after all this research and communication. I decided I should email the infamous Endo, for a little opinion. So I sent him an update on my stopping the Symlin, logging and testing like a maniac, pump research, the night time insulin resistance, and what I believe is the Dawn Phenomenon. I only sent it this morning so we will see what happens.
Happy Weekend Everyone!
Sunday, August 5, 2007
5 S's
Software
Recently I started using SugarStats to see if it would help me document the trends I see in my readings. I do not have the software for my Ultra Smart, so I needed something else to create graphs and logs. I would have to say that I am not satisfied with SugarStats. I can see how it is helpful for some, but I didn’t feel like the graphs were detailed enough, and I also hate how you have to enter meds and readings separately. It took FOREVER! So I went to trusty Google and found something better GlucoseOne. It has the graphs I wanted, individual days showing the ups and downs I see daily not just averages. You can enter meds and readings at the same time. I love it!!
Recently I started using SugarStats to see if it would help me document the trends I see in my readings. I do not have the software for my Ultra Smart, so I needed something else to create graphs and logs. I would have to say that I am not satisfied with SugarStats. I can see how it is helpful for some, but I didn’t feel like the graphs were detailed enough, and I also hate how you have to enter meds and readings separately. It took FOREVER! So I went to trusty Google and found something better GlucoseOne. It has the graphs I wanted, individual days showing the ups and downs I see daily not just averages. You can enter meds and readings at the same time. I love it!!
Sprained
I sprained my ankle while helping my sister move into her 3rd floor apartment on Wednesday. My blood sugar was low, but being stubborn I was still trying to help. So somewhere walking down the steep and narrow stairs, my ankle twisted in and whalah sprained ankle. If my blood sugar hadn’t have been low I would have had better reaction time and coordination. Stubborn should be another a “S” in this post. Now to one of the things that could have caused this low.
Symlin
So Thursday evening I decided to stop using Symlin, for a few reasons. Mainly the fact that I was having excruciating headaches. I know they were Symlin related headaches because when I would skip a dose the headaches didn’t happen. Before taking Symlin I would rarely get headaches, and Symlin is the only thing that has changed. Plus, the headaches happened just as I would be mid way through any meal that I took Symlin before. This is the scenario: I would test for my before meal number inject my Novolog, inject the Symlin, go eat, and about halfway through my head would be throbbing, and I would become so nauseated that I could never complete a meal. Then for 2 hours after all I could do was sit with my eyes closed. Now this wasn’t really happening when I started, and when it was it wasn’t this bad. It wasn’t like a migraine, it was just a little nausea and a slight twinge in my head. But now its horrible, plus I don’t really know if my improved numbers were just Symlin, or Symlin combined with my new found dedication to Diabetor. Which leads me to the next “S”….
Settling
I think before I started taking the Symlin I was settling. Just taking whatever my doctor said, following that and not trying to make anything better on my own. Tweaking has become my new hobby, carb ratios, correction factors, timing, testing. I think that if I hadn’t started with the postprandial blood sugar checks, constant note taking and correcting. I would not have seen success. I do not doubt that Symlin as a drug actually helped me, but I think it actually motivated me to gain more control overall. And since stopping, I have actually had the same or better numbers (weird I know), by just using the things I learned while on it.
School
I think I mentioned in another post that I was beginning the process of home schooling myself, using a self directed program. So as of a few weeks ago I became and official student of Keystone National High School. I have been having a lot of trouble with motivation and my mom is stressing this fact. I think it has a lot to do with the fact, that this step solidifies that I will not be returning to my high school. It’s not the actual school, seeing as I had a horrible time there and they did not cooperate with the many health issues (anxiety, depression, and Diabetor) that prevented me from being the best student I know that I can be. It’s that this distances me from my friends, and being a person with anxiety it’s already really hard to get myself to a place where hanging out with people is actually fun and not overwhelming. I just feel like it will cause my friends to grow away from me, because I won’t be participating in a huge part of their lives anymore. I guess time will only tell. And for another "S".
Sayônara!
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