Wednesday, December 7, 2011

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!


Thursday, August 18, 2011

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!

Monday, July 11, 2011

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!

Saturday, July 2, 2011

Memories, Milestones, and Mixed Emotions

365 days.

I couldn't imagine ever getting here back then - on day 1.
It seemed so far away. And the journey ahead seemed impossibly difficult - physically, emotionally, mentally - for us as parents, but mainly for our little 6 year old son, our youngest, our baby. It seemed so unfair that out of the blue, for no reason whatsoever, he was handed a life sentence of daily pokes, shots, constant monitoring, carb counting, doctor visits, blood tests, highs, lows, and of course worst of all - the possibility of death.
Every. Single. Day.
He was so sad, and so angry about it all. He cried and pounded his fists into the couch. He pleaded with us to explain. "You mean I have to live with this for the REST OF MY LIFE?!"   "Now every good day for the rest of my life, like my birthday, and Christmas, is going to be a bad day, because I'll have to get shots."  "It will be like this today, and tomorrow, and the day after that, and the next day, and the next, forever, and ever, and ever, until I die. How am I gonna live like that?" Imagine that you're 6. The worst day of every year is when you have to go to the doctor and get your yearly immunizations. And now you are told that you have to prick your finger tips with a needle and squeeze blood out sveral times every day and get 6 to 8 shots a day too just so you can eat food.  He couldn't imagine it. And I couldn't either. And my heart broke every minute of every day for a long, long time. And we cried, because that's all we could do.

First, we were so lucky to have patient and kind nurses and doctors at Phoenix Children's hospital who understood our fears and our needs and tried their hardest to help us in any way they could. We are so grateful to all of them. Dr. Peterson was Joshua's lifeline at first in helping him deal with his emotions and fears. She is still his good friend. What would he have done without her??

Our family and friends have been so supportive as well. They were as shell-shocked as we were, and have been there for us financially, phyically, and emotionally. They went to caregiver classes, learned to count carbs, watched the Glucagon videos I sent, probably got tired of me talking about it all the time, and probably don't understand why it's all I think about (only the DOC can truly understand that), but they put up with it without complaint, and they show up and WALK, and cheer, and try to understand.

And somehow we just keep plugging along.

We were so, so lucky to find our local support group. Meeting up with them for the first time felt like finding a buoy to hang onto in the middle of sea with no land in sight. They helped us see that life would go on and it would be ok someday. They helped us breathe again. They are the only ones who really understand without any explanation needed. I feel I belong with them even though I've only met them a few times.

Then I found the DOC. I don't know how I would have made it through this year without all of you. I can't thank you enough. I have especially been inspired, laughed with, and cried with Wendy ,  Tracy,  Reyna, Meri,  Hallie,  Lorraine,  Laura,  Alexis-Nicole, Kristi, Heather and Lora. You all have helped me so much. I have gained strength from your strength, I've cried with you and worried with you, I've laughed and been hopeful with you, and mostly just kept on living this D life with you.  Thank you.

So now on the day of Joshua's 1 year Diaversary I come to the real point of this post. Someone asked me why we would celebrate the day he became diabetic . I know to someone on the outside it must seem strange . They don't live our life, They don't understand. So I wanted to write this post to help my friends and family understand why we want to celebrate this year and every year.

We want to celebrate because Josh is ALIVE . So many kids don't make it past diagnosis. We were lucky. We got him in to the hospital early. I recognized some weird symptoms, he was very sick, but not as sick as many, and not critical. If we had waited he could have gone into ketoacidosis, possibly had seizures, and/or gone into a coma and died. I am forever haunted by a story I read a few months into our journey about a 1 year old baby who was diagnosed on the night of his birthday. He had of course had his first birthday cake that day, but by the evening he was in the hospital in a diabetic coma. He died that night. I couldn't get that little boy out of my mind. In fact it ruined my niece's 1st birthday for me .  I was worried for my niece, but mostly sad for him and his family (and for ours). I kept tearing up. D strikes again :(
Why do we want to celebrate? Plain and simple. We want to celebrate the day Joshua's life was saved.

We also want to celebrate our continuing victories in our battle with this hideous disease. There is nothing good or friendly about it. It doesn't play fair. It cheats. It's mean and nasty. It hits below the belt. It hits you when you are down. When you are exhausted, and don't think you can take any more, it kicks you again, and again. But we all keep fighting. We don't give up. Because we can't. Our walk team is called Joshua's D-Featers, and we ARE defeating D in little ways every day. Every time we catch a low before it gets dangerous, we win a battle.  Every time we beat down a high, we win a battle. Every time we crunch the numbers, adjust those basals, predict the right amount of Lantus to give, guess the right number of carbs eaten at Golden Corral, predict the right amount of basal reduction to make before riding his bike, we win. And even when we stumble, we make a mistake, and beat ourselves up, and second-guess, and think, and re-think, and cry sometimes, and rage sometimes, and get so frustrated, we still win, because we at least care and we have the love of our son and D will never have that. So we want to celebrate another year of hard fought battles and victories.

And the victories have been great!
He learned that he could survive having shots every day. He'd be ok.
He got to where he was actually FINE having shots. He said they didn't hurt anymore!
He made a video to tell other kids that were just being diagnosed that it would be ok. They would feel better about it after awhile, and the shots wouldn't hurt so much anymore. And another to tell other kids what life is like with Diabetes.
He learned to test his own blood sugar.
He learned to find out how many carbs are in different foods.
He finally got brave enough to try a pump. He was so scared to get that first site, but he did it and has never looked back.
He is not at all embarassed about his diabetes or his pump. He shows it to everyone and talks about it proudly. He says he is glad he has diabetes because it makes him special.
He auditioned for his first ever youth theater play and got the role of a turtle. He had a blast! He even had a "The show must go on" moment one day when he had a BG of 30 during the show. He tested himeself. Got a dollar out of his bag. Went to the concession stand, and told her he needed a candybar. When she asked him if his mom knew he was buying it (She knew he had Type 1, and no I didn't because it was the one night I was in watching the show!), he said, "No, but I need it! I'm 30!" 
He was having lots of trouble with anxiety for awhile. Thanks to his old friend Dr. Peterson, we got him evaluated and he got a new diagnosis - OCD (mild thankfully). He handled that with his new go get um attitude. When we met our family for lunch he walked in and announced "Guess what?! I have OCD now!  :) Now I have two diseases." He is handling all of that plus D and seems to be taking it all in stride.
He made a best D-friend Gavin and is so happy to have shared his first D-Anniversary with him!

So you see that the year was hard, without a doubt. Battles were fought. And that day. That day was horrible. I don't know if I can write about those few days yet. Still. But yet we must celebrate. Because we can't dwell on the negative. If we do then D wins. And we can't let it win. We choose to celebrate life and hard fought battles, and daily victories.

Thank you so much to everyone who supported us through this year. You helped us get to where we are today. We are grateful.

Happy 1st Diaversary Joshua!!