D-Blog Week Day 2: Wildcard - Dream Diabetes Device

Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc. etc. etc. The sky is the limit – what would you love to see?


Something that I would love to see is some kind of quick acting glucose that I could use at night that I wouldn't have to wake J up and try to get him to eat or drink while he's half asleep when his blood sugar is low. I'm picturing something like those flat medicine Thin Strips that Triaminic makes:

 

Why couldn't they make some kind of glucose strip out of these? 15 carbs or 10 carbs each? And then all you'd do is slip one in your sleeping child's mouth and viola! Instant rise in BG and no fuss no muss. No constant night waking to force feed crackers or milk or juice. No worries about tooth decay from juice or milk sitting on the teeth all night. No worrying about him choking on food when he's half asleep. And make them flavorless too. Or maybe just very mild.

 

Now how do you get a company to consider an new idea???

 

 

WendyP



It's the Fourth Annual Diabetes Blog Week! So all week, I, and lots of other D-Moms, will be blogging about a different topic each day. You can check out the topics and all the posts for each day here: http://www.bittersweetdiabetes.com/p/2013-diabetes-blog-week-topics-posts.html

Today's topic is: Share and Don't Share   
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?


I feel so lucky now to have found a new endo that actually is supportive of what we are doing. Our last one wasn't. So what I would write here is completely different for both of them. I think I'll share a little bit of what I would say to both of them just in case someone else out there is in the same boat I was in for the past couple of years.


To our old Doc:

I wish you could have seen me up late at night, say about 2:30 AM. I hadn't been to sleep yet. I'd finished with my busy day of homeschooling my 2 youngest kids and my 4 yr old niece and 5 yr old nephew. My youngest had gone to sleep first. He's my T1. His numbers, as usual were all over the place that day. They had been for a long time - great one day then tanking the next, despite my best efforts to everything "right." My middle child took a long time to get settled into bed. At this time her OCD/anxiety were still not under control. She had a whole bedtime routine that we had to do nightly just for her to be able to sleep. It usually took about an hour (or two). But finally, she was sound asleep too. And then of course I had my oldest. A late teen, trying to navigate the world of jobs, college, life, who still needed late night talks with mom. So on this night, somewhere around 2:30 AM, maybe it was later, there I was sitting on the floor of his room by his bed after finally getting everyone settled down to sleep. I had just finished changing his pump site, again. This was now an every other day occurrence although we were told the sites should last 3 days, and I had heard people say sometimes 4 to 5. I then began the process of transcribing all of his blood glucose numbers, insulin boluses, carb amounts entered, etc., into his daily log book which of course I was WAY behind on. I felt BIG guilt at this time about being behind on this. It was probably contributing to his roller coaster numbers. If something was wrong with his diabetes, it was my fault. I must have been doing something wrong. Or not enough. Or . . . So anyway, I got all the numbers in that logbook, maybe it was 3:30 by now, and I started crunching, searching for trends, trying to figure out what was going on, why his numbers were so erratic, what changes I could make, what I could DO.
Why did I have to figure it out NOW??? Because I our appointment with you, dear Dr. was the next day, and the rock in the pit of my stomach was already sitting there nice and solid. I knew how it would feel to hear the high A1c number. I knew you would have plenty of questions for which I would only at best be able to stumble over the answers: "Here on June 23rd, why would you test him and correct him at 3:20 when you had just tested him at 1:00?"   "Uh . . . . Ummmmmmm???  I don't know doc. I don't even remember what happened on June 23rd. Maybe he told me he felt low at 1:00? Maybe I had a feeling he was low? Maybe we planned to eat at that time and then he dropped his entire plate of food on the floor and we had to go to plan B?"  The truth is I have NO IDEA!! Maybe life happened doc!  
But I digress . . . So there I was crunching numbers, looking for trends, with a rock solid stone in my stomach, and I finally saw something! There it was, as plain as day! And the trend literally went back almost two years!! Site change. Beautiful numbers on day one. Numbers start creeping up on day two and are high by the end of Day 2. He could not go more than a day and a half on those Teflon cannulas without his numbers creeping up! Mystery solved!!  And it was right there in black and white. I went to bed with some relief. Now I had something you could help me with. Surely you would see it too. Whew!
I wish I could say everything went my way, but we both know it wasn't quite like that. When we went to see you the next day his a1c was 8.9.  Punch.  You questioned me all up and down that log book. Punch. You told me I was checking his blood sugar too often (7-10x/day).  Punch.  You told me I needed to let him have time away from his diabetes. (What??? As if somehow I was creating all of this? He wasn't privy to all of my worries and concern. All of my logging, reading, was done when he was sound asleep!). Punch. You wouldn't see the trend I saw. Punch.  You said, "Do you just want to switch back to shots? It sounds like you're not to happy on the pump." ("Oh yes, I'd much rather poke my kid with a needle 10 times a day that once every other day doc, thanks for the idea.") Punch. You quickly looked at the numbers and suggested some quick basal changes and then were out of there. Punch. Oh, I forgot. Before you left, you told Josh that you wanted him to try to start doing his site changes without EMLA (numbing cream) by the next time he came back. Punch. But guess what. That was last punch you were ever going to make. Because NO ONE IS GOING TO PUNCH MY KID. If there is a pain-free way to get a 3/4" needle stuck into your stomach every 2 days and he wants to use it, he's damn well gonna use it!  
Doc, I wish you could see how much I just needed your support. How hard I was trying to do everything right. How much I read, studied, pondered. How much weight I bore on my shoulders. How there is no real word to describe the sick feeling you have of the looming threat of nightly death. How the concern about the future effects of each high blood sugar number adds extra weight to the burden I carry every day. How hard it is to let him out of my site knowing that it only takes one mistake for there to be life-ending results, but at the same time knowing that he needs so much to be able to be a regular kid doing regular things. I wish you could see that I was not the enemy. That if what you really wanted was for my son to have the best health outcome, then you needed to be on my side, cheering me on, showing me what I did right, and helping me when I made mistakes, instead of accusing, reprimanding, demeaning, belittling, and ignoring me. I wish you knew that if it wasn't for all of the awesome support staff: the nutritionist, the pump specialists, the psychologists, the nurses, and nurse practitioners,  I would have left your office a LONG time ago.


To my new Doc:
I hope you know how grateful I am every time we see you that we found you. How thankful I am for my support group for recommending you to us. You have been nothing but supportive and caring and on our side from day 1. I always feel that you are routing for us, and that you understand that life happens and that Diabetes doesn't play fair. When it changes the rules of the game, you always have new ideas to try. You don't blame me when my game plan isn't working anymore. I'm thankful that you allow us the opportunity to try new technology that we couldn't afford to use on our own. And mostly that our favorite nurse practitioner from our old doc miraculously ended up working with you now!  I guess I wish you knew all of things above too, but I think that you already do. :) 



Things I hope you don't see:
Well . . . these are probably the usual -

• That I only change my lancets when they stop working - oops!
• That sometimes I forget to bolus. I don't know how. We just get busy and a bolus get skipped.
• That sometimes I'm unorganized! I run out of sites! I run out of insulin! How could I let that happen? How am I not on top of that?
• I hope you don't ever have to see into the dark heart of hearts scary world of this disease with your own beautiful boys. It's not something I would ever wish on anyone. EVER. It exhausting, heartbreaking,  sometimes hopeful and uplifting, sometimes inspiring, but at this point never ending, and for this reason dear doc, I hope you never ever go there. . .

Wendy

S.Y.D.C.M.S.

I'll tell you up front. This isn't an easy post to write. It's about imperfection.

I don't like imperfection. Not when it comes to my son's health. His future. 

Not when it's me who's been imperfect.

I've been thinking about this topic for a few days. And then I read my friend Wendy's post that hit just a a little too close to home. The post talks about diabetes complications, something I've been thinking a lot about lately. It's something non-D people don't think about much. They realize you need to worry about the low blood sugars, but the highs are bad too over a life-time. They can cause a host of problems including heart and blood vessel disease, neuropathy, kidney damage, diabetic retinopathy, damage to the feet and legs, osteoporosis, the list goes on. I once heard it described that every time your child has a  very high blood sugar it's like tiny microscopic shards of glass are flowing through his blood stream and causing damage to his organs. Now I don't know if that's really true or not, but that visual has stuck with me, and every single time. I see a number of about 300 or higher on his blood sugar meter, I feel a knot in my stomach. I sick feeling of worry, and guilt, and second guessing. What happened? What did we do wrong? Did I not give him enough insulin with his last meal? Is there a problem with his pump site? Is he getting sick? Did I miss a #$%@ bolus AGAIN!! Did he eat something and not tell me? I guess that last one is the worst because he's staring to feel it too. He'll see the number and say, "Now don't get mad, mom,"  or "You're not gonna like this,"  or "I didn't eat anything, I promise!"  So now I pushing that guilt and sick stomach on to him. He's 8. Just great.  

But here's the worst part. It's mostly my fault. I'm slipping up. There, now you know.

It's not intentional of course, but I'm just not on my A game. And how can I not be when those tiny little glass shards are traveling through my baby's blood stream?? But I've missed boluses. It happens. I don't really know why or how. It just does. It's dinner time. I figure out the carbs for his meal, I'm busy getting everyone what they need, I get him his plate, make sure he has checked his blood sugar. And then somehow, after all that, carbs counted and all, the bolus was never given! BG 511. OR, I did give it, but something went wrong with the pump and I didn't pay attention to the alarm, didn't hear it, and then didn't find out for another hour or two (or four) that he didn't get the full amount he should have. BG 378. Or how about those times when he takes a bath, and takes off his pump, and then comes out and eats dessert, and I dutifully have him check and bolus, only to find out later he never reconnected his pump. BG 450. 

Our diabetes online community (DOC) is such a huge network for support. A group to ask questions of, commiserate with, and just in general to feel like you're not alone. There are a couple of funny acronyms that we use that have meaning only to families with D. 

One is SWAG - Scientific Wild Ass Guess. 

You use that when you're trying to make your best guess on the carbs for something that's not easy to know like maybe a casserole or something homemade.  

Another is YDMV - Your Diabetes May Vary. 

It means each persons diabetes is different. One child may react to a specific insulin one way and another may react differently. One may have a hard time dealing with something like pizza while another may have no trouble with that but marshmallows cause their blood sugars to soar. YDMV.    

Well, I have a new one. I don't think it applies just to me. I know we all go through this from time to time. It's not a pretty one. I guess that's good because it doesn't stand for something pretty. 

SYDCMS - Sometimes Your Diabetes Care May Suck!!  

Mine definitely has lately.  Eleven BGs over 300 in the last 5 days. Six of those were over 400. Why is this happening? Not sure, but here are some guesses:

1. I haven't been keeping up with my logs. No logs means I can't see patterns and make    

    adjustments.

2. I haven't been sending in numbers to the endo like I used to. I don't think I need to do 

    this as often as I used to, but if I was having bad numbers, I would normally send them 

    in. See #1!

3.  We switched to a new infusion set - Orbit Micros. We are getting a lot of occlusion 

     alarms. I'm still trying to troubleshoot.

4. We just started a vial of Apidra to see how it works ??? 

5. I need to make some basal changes. See #1.

So, yes, imperfection. BIG TIME. And guilt. BIG TIME. And WORRY. BIG TIME. 

And just SYDCMS.   

BUT,  I know there is a flip side to this one and that is:

SYDCMR - Sometimes Your Diabetes Care May Rock!!  

I've seen lots of you there. You have inspired me many times before. And guess what, I've even been there myself now and then. So I know it's just a matter of jumping back on the wagon and getting it together again. D can just take a lot out of you. It gets you down, and gets OLD, and gets tiring! And it gets way too routine. I think that's a big part of the problem. It's easy to let things slip. I've let things slip. I've been imperfect. I know no one is.

But those glass shards . . . Ugggghhhhh!!!!

I hate my diabetes bag. There, I've said it. I'm sorry. It's one of those blue JDRF bags. We got it for free from the hospital I think. I so appreciate that they do that. It was invaluable to us as new D parents. They tried hard to make it a great bag, and yes, for the first year, it was pretty good. It had plenty of room to store things, several pockets. Even one in the back that was insulated. But now, after all this time, I really just can't stand that bag!

It's just so heavy. Do you realize what we have to carry in there? (I know some of you unfortunately do.)
Here's the list of what's in there right now:

 In the front pocket:
An empty test strip container full of my migraine pills
Another empty test strip container full of Jesse's migraine pills and allergy pills
A full test strip container for just in case we ever run out
4 Peter Piper Pizza ticket vouchers totaling 845 points (he's saving them up for something - not sure what.)
A tube of Extra Strength Tylenol
A pen and a pencil
A few Tampax
A tiny bottle of hand sanitizer
A small roll of medical tape (I have actually used this and a cut up baggie to hold EMLA in place when I was out of IV3000! Came in handy that day!)
A half-eaten bag of Skittles, a whole fun-size bag of Skittles, and a small Laffy Taffy
Josh's MP3 player
One tube of Blistex, one Carmex, and one some other weird lip balm
Josh's diabetes ID bracelet which he refuses to wear for long amounts of time because it's uncomfortable. (Need to get a new one!)
4 AA batteries for the pump.  (A bit of overkill huh?)
1 AAA battery for the meter remote (Underkill - yikes! Need to get another one.)
$1.75 in quarters (He's always asking for quarters for the machines in the stores)

In the main part of the bag:

1 Ziploc bag containing a crapload of bandaids (Would I say I have a plethora of bandaids? Yes, I would.), some IV Prep wipes, some alcohol wipes, and a couple of cough and cold strips.
1 Ziploc bag containing supplies for 3 site changes, some keytone test strips, a tube of EMLA cream, and a tube of Neosporin ointment
One sandwich bag that has various carb cheat sheets in it like for Mc Donalds, and other fast food places we go, or restaurants we frequent, also a one page sheet on what to do for low blood sugar if anyone else should need it in my absence
A Glucagon Emergency Kit
I sandwich bag full of Smarties, Skittles, Necco Wafers, etc. which may never get used because he doesn't like most of it! If we're desperate we have it I guess.
The little Calorie King book. Thinking about dumping that one. Never use it anymore but Jason does I think. I just use my phone now, and that damn little book is heavy!
2 juice boxes
About 10 used test strips hanging out at the bottom of the bag
1 travel pack of wipes
A small plastic container that holds about 8 crackers just for a low. If I don't keep them in there, they get crushed.
Another small platic container containing 7 syringes, a little tube of cake gel, some alcohol wipes, and some Laffy Taffy's (for some reason)

When we get ready to go out, I throw in there his blood sugar test kit with meter remote and (in the summer) my freezer insulated bag with the insulin in it. Right now I just get to throw the little insulin bottle in and go - yay!

 All of that adds up to HEAVINESS! Especially day in and day out.
 
And those damn straps. They won't stay on my shoulder. They're shaped weird. It's constantly slipping off my shoulder.

AND, it just looks frumpy. I don't need ONE. MORE. THING. making me look frumpy. I'm doing a fine job of that on my own thank you very much.

I think maybe there is a psychological thing with this bag too. Like the bag IS D. We are stuck with it. We can't go anywhere without it. We can't take the chance that we will be somewhere and he will have a low blood sugar and need to be checked or need his candy or juice. We can't be away from the insulin or shots just in case. What if we went into a bank and someone decided to rob it while we were there and held us all hostage? I know that's crazy but it could happen. We need that lifeline bag with us at all times. It HAS to go everywhere with us. EVERYWHERE. All the time.
FOREVER. You get the picture?

And sometimes I hate it so much that I just want someone else to bear the burden. Sometimes Jason is with me and he carries it then, but that's not often. But the worst is when I'm tired and I ask Josh to do it. "Can you get your bag?"  or  "Don't forget your bag."  And he does it. Every time. Without a complaint. Like he knows its his problem or something. His responsibility. And when I see him walking ahead of me with that heavy blue bag on his small back I feel so sick to my stomach because it should be me carrying that burden for him. He's carrying enough. And the guilt overwhelms me sometimes.

So yeah. I really hate that bag. I need a new solution. (That doesn't cost $100!)  Got any ideas?

Cheating Destiny - Book Review

I just finished reading Cheating Destiny by James S. Hirsch. It's an honest, and quite thorough look at the past, present, and future of life with Diabetes. He starts by talking about finding out that his young son has it and how hard that whole event is. James himself has also had the disease his whole life. He then goes on to talk about the history of diabetes research, the invention of insulin, and then takes a thorough look at the research that is being done today. He also talks about what it's like to live with Diabetes day to day both as a parent and as an adult living with the disease. Toward then end there is an honest discussion about whether we will ever have a "cure" and a heartfelt discussion about his hopes for his son's future.

I am really glad I read this book. Not only was it a concise and very readable compilation of the research that has been and is being done in the field, it also doesn't sugar coat things. Because he is a parent, he wants the same answers I do, and he asked the same kinds of questions that I would have asked. In being honest with himself, I got honest answers too - some that I really didn't want to hear, but which I think I deep down feel are true:

"I had already planned to visit or interview top scientists in the field, but now my inquiries had less to do with the book than with my son. Why isn't there a cure? How far away are you? What in God's name have you people been doing for the past thirty years? . . . "I was forced to recognize that Garret had no chance of being cured during his childhood or well beyond. Indeed I could not find a single clinical trial anywhere in the world to cure type 1 diabetes. And even if one were to succeed, it would take at least 10 years before any treatment would be available. While we can improve ways to maintain normal glycemia, we have not, and perhaps never will, resolve the underlying immunilogical defect: the disease itself."

And then from the ADA president:  "The more we learn, the further we are from a generic cure."

From a professor and 50 yr researcher of diabetes at the Medical University of South Carolina, "We can't change genes.There is no cure for a genetic defect unless you want to reengineer children. We would settle for optimal management."

 From Joslin's Ronald Kahn, "If you give an antibiotic for pneumonia and the pneumonia completely goes away, then I've cured the pneumonia, but most of the things we talk about with type 1 diabetes don't make the intrinsic disease go away. In fact, the only way we'll make the intrinsic disease go away is more in the area of prevention than cure."

With some of the recent discussion that has gone on about whether JDRF is really still looking for a cure or whether they are just researching prevention and the artificial pancreas, I have been thinking a lot lately about whether there ever will really be a cure. I know we all want to hold out hope. I know that diabetes was a death sentence, and now we have insulin, so maybe what seems impossible is possible. I do believe maybe some day they will be able to prevent it. Or maybe they will be able to stop it in it's tracks if they catch it in the very early stages. I don't know. But how can they cure it when it has already done so much damage? The beta cells have been destroyed. The pancreas doesn't work anymore.  If there is a genetic component, then how can they "cure" that? You can't cure green eyes.  I am hopeful that Dr. Faustman has some answers. That she has found a way that others have not. But I still have a doubt. Maybe it's just some thread we're holding onto. We walk, we raise money. We hope.  But maybe we really just need to be honest and realize that any kind of working cure, if it is even possible, which I'm not convinced it is, is a long long way away. Josh will be grown (I hope).

Does that mean I stop walking, stop raising money, stop hoping. No.  I still do all that because I want a better life for him. I want for gosh sakes one damn site that continuously monitors his blood sugar, gives me BG numbers without me needing to prick his fingers all day, gives him insulin as needed, and doesn't need to be changed every two days. I don't think that's too much to ask in a time when I can be in the middle of the woods and use my cell phone to google what's on tv tonight, or when we can give people artificial hearts and cochlear implants, or I can look on my computer at a satellite image of my home taken from space.  I mean come on people! Help us out a little! 

I guess my hope for a cure is still there, it's just more realistic now, and I appreciate this book for helping me articulate what I already knew.

I hope all of that downer talk doesn't keep you from reading this book. It is actually overall a positive book about real life with diabetes. It's an easy read and it's well written. I really enjoyed it and I think you will too!

Wendy

A 9 and a Knot.

Well,  nothing like feeling like you just stepped out of the prinicpal's office when you leave your endo visit.  I quite enjoy having every blood sugar, every bolus, in fact every decision I made over the last week  questioned, frowned at, and second-guessed - NOT.  Josh's A1c was up to 9 form 8.7 in April. I'm bummed. I really thought we were doing a bit better. Guess not.

From the start I knew things were once again not going to go well. She asked me what meds he was on and when I told her about the OCD meds he had been prescribed, she started asking about our homeschooling and whether or not he had friends. Does he see them at least once a week? Are we part of a homeschool group? Did we school during the summer? Now I ask you, what does one thing have to do with the other? From day 1 she has questioned his anxiety and blamed it on me testing him too much and not letting him just "be a little boy away from his diabetes."  I'm sorry but when a psychologist and a psychiatrist both diagnose OCD/Anxiety and when said meds actually help his symptoms - go figure. AND when I test him 6-8 times a day, I think she is a little off. Just saying. But then she is clearly now reaching into homeschooling and wondering if he has any friends? Give me a break. So I was already starting off defensive right away. Great way to start the session.

Then she says his A1c is up and starts going over each number on his log one at a time asking why did you do this? What happened here? Why would you bolus here?  Why not test here? Why test here?
She does not like me testing at night. She now does not want me to bolus at night at all unless he is over 300 so that she can see what his basals are doing. She also wants him to be on a strict meal schedule during the day of only eating every 3 hours. I am only to test him when he is going to eat or if he feels low. If he is hungry in between he can have a 0 carb snack or wait. (Oh he is going to LOVE that!) She says, "He's 7. He can be disciplined and eat every 3 hours. There's no reason he needs to eat any more than that.If he wasa in school he wouldn't be able to eat whenever he wanted to. He would have to wait."  Um, yes, one of the hundred reasons he's NOT in school.  Also, "There is no reason you need to test during the night if his basals are doing what they are supposed to be doing."
But HELLO???  His basals AREN'T doing what they are supposed to be doing. BG's are all over the place remember? A1c is 9??   She ended with "Does that all make sense?"

My response was, "No, honestly, it doesn't.  If I am trying to reduce his A1c, why would I not bolus for every high BG he has, not matter how high or what time of day it is? If you test him and bolus all during his waking 12 hours, why would you not test him and bolus during his sleeping 12 hours? The whole point of going on the pump is to give him more freedom. To allow him to eat when he wants to eat. To be able to bolus him for even small highs. To get tighter control. Why would you be asking me to let so much go?"  She basically said all the work I'm doing isn't working because his A1c is 9 and everything is getting jumbled up because he is eating too often and we are testing too often and correcting too often (again 6-8 times a day) so we are not able to clearly see what to do with the basals.  I tried to explain that all I was doing was what the pump was telling me to do! I bolus when the pump suggests that I do so. I test when the pump alarm reminds us to test, or when he eats, or when he feels low. Our pump alarms every 3 hours to remind us to test. She was shocked by this and said MOST people don't have that on, and that THEY wouldn't have turned that setting on, and she made sure the pump specialist turned that off for us. Newsflash lady I didn't turn it on either!! It's just what our pump does! Someone set it to "on" but it wasn't ME!  I guess she just thinks I'm some kind of nut. That's the feeling I get anyway. Shouldn't I feel supported by this person rather than challenged??

I agreed to at least try what she is saying and see how it goes. I was feeling fairly pummeled by that time. And also, I guess I just don't want to feel like I'm not hearing what I want to hear from her so I'm gonna hit the road. Yes, her bedside manner sucks. Yes, I really am not liking her. But I am willing to at least try what she's saying and see if it makes a difference. Whether it does or not, I still intend to change docs. It's just a matter of when. This one is clearly not a good fit for me. Is there a point to hanging in there a few more weeks? I'm not sure. I'm too irritated to make a rational decision. So basically for now we are on a strict eating and testing schedule for the next 6 weeks  to try to figure out his basals and get things on a better track. AND I am supposed to send her in numbers every week. I feel like I am on probation or something.
Just LOVED walking out of there with a knot in my stomach. Just what I needed to go out and face another month of D!

To Switch or Not to Switch

 Decisions, decisions . . .

I'm having a hard time with this one and I'm not sure what the tipping point will be.

Should we switch to a new endochrinologist or stay with the one we have?

The thing is, Josh just isn't doing as well as I'd like him to be doing. His numbers are still fairly high. I  know that isn't her fault. I guess I put most of the blame on me, honestly, or at least I carry it. I think if I knew more, if I was doing it better, if I did this or that more accurately, maybe his numbers would be better. But I also know I need more guidance. And I just have never felt comfortable with the "one-size fit-all" approach that I feel  like we sometimes get handed. Maybe that's not a fair assessment. But just for example: the old 15 carbs for 15 minutes to treat a low. Well, not necessarily. Depends on the weight of the child, the amount of the low, the target you want to raise to. Or what about the idea of getting 3 days out of a site. Well that didn't work for us. We are now doing changes every 2 days, and that isn't working great either. I want to know more, and I want better control of Josh's D. I hate that it feels like I'm always chasing it, always spinning the wheel to see what I'll get. And then wondering what it's going to mean for him years down the road. Do I really want to just keep shrugging my shoulders and throwing my hands up and letting D be in control? I don't feel like I'm getting enough tools from my endo right now. And in fact sometimes I feel like she's working against me.

One time I went in when Josh was really struggling with having a lot of anxiety. He was having a hard time differentiating between lows and what he called "the scared feeling." This was a constant daily thing for awhile. When I would test him he would often be in the 200 range at these times. I felt sure that there was some blood sugar connection to his anxiety, but my endo refused to even consider it. When I tried to talk to her about it, she talked to me like it was me who was causing the problem. I was testing too often (10x a day) and if I would just let him be a little boy and have a break from his Diabetes, he would probably feel better. She suggested that my night checks were unnecessary. That none of her patients do night checks. Basically she made me feel like crap. When you spend so much time worrying and thinking and re-thinking and doing all you can to make your child be as well as he can be, you would at least like some support from the doc. I didn't get that.

So why is there even a decision right? Well, I'm hung up on the whole moving away from the hospital connection thing. His endo is the one we had straight out of the hospital. We go to the children's hospital for his appointments. He gets all his tests and blood work there. They have a nutritionist there. And now that he is being seen for OCD, his psychologist is there too. If he ever has to go back to the hospital, which I am assuming he will at some point happen, everything is there, all his records, his docs, etc.  I guess I am just afraid to cut that cord.

So why not see another doc at the hospital? I don't know. I guess because I feel awkward about it. Isn't that dumb! Why should I care. She doesn't care about me feeling like crap. But still, that's how I feel.

So, there's my dilemma. I know I need to do something. What we're doing now isn't working. It isn't what's best for Josh. It's just making the right decision that's holding me up. I think I just have to make the leap and let the cards fall where they may. But uggghhh! It's hard!