Sorry...but it upsets me


(paulg765) #1

I've had Type 1 for almost 40 years, which is not as long as a few of my buddies in the community.  I've lived through some difficult periods and unfortunately have had some complications which you can read about in my bio.  Thank God, however, that since I've embarked on a rigid diet and exercise regimen, my blood sugars have been good, I've had no further complications, I generally feel pretty good, I've lost weight and I have more energy.

So what am I upset about?

It upsets me to see new faces (profile pictures) of beautiful young childdren and teens show up daily on Juvenation.  I feel sorry for every one of them, despite the fact that I personally have nothing to complain about right now.  I've already led a good "full" and even "happy" life.  I don't know why..., but it just upsets me.


(FrankD) #2

I've justfound this group and am glad to see my friend Paul here.  I couldn't agree with his comment about children more.  But, on the other hand, at least they have some tools these days unlike when many of us became diabetics (I almost 48 years ago) when there ewren't even much in the way of disposable syringes, let alone meters and pumps.  It is sad, but it is so much more hopeful and optimistic than it once was for us.  In additiion, the Internet and JDRF have now added another dimension to the sharing experience of diabetes.

Frank Devlin 


(paulg765) #3

It's all true, Frank, and while I am aware of all the advances and tools, I still feel sad.  Behind each new face there is a story and there is always a "why me," and all the fear.  There's fear that goes beyond the disease itself to real social concerns.  What will my friends and other people think?  There are so many unanswered questions.  The management of the disease itself is tough and it's so time consuming.  I wish I could just wave my magic wand (as my Mom used to say), and make it all go away.  Perhaps I could just wake up from this dream where children and teens are, out of nowhere, dealt a life-changing hand.


(FrankD) #4

You're right about the "dark side," but at least there is some sunlight peaking out from behind the clouds.  There may not be a bright light at the end of the tunnel right now, but there may be and medicine is trying although not hard enough.

On the forum, I've chosen to reflect on how tough it is, but cheer mightily for those young people who have more tools and learn how to make use of them and live longer and less afflicted lives.

Frank

 


(Doug D) #5

Hi Paul and Frank -  I like this thread Paul.  I too have such conflicted feelings when I see the young ones on here.  I get upset that they have to go through it but also very happy that they have this forum to vent.  We didn't have it when we were younger.  I am sometimes even jealous of them becuase blood meters aren't the lastest and greatest thing, they don't have to test their urine or wait in line every month just for a fasting bs at the blood lab.  Then I think, wow I'm so happy they don't have to deal with what we did.  I firmly believe the D has made me a better person for many reasons and I hope it does for others here.  My fear is that people will just give into it.  Hopefully, people like you guys (Paul and Frank) will continue to show the youth that the D doesn't have to stop you from accomplishing life's dreams.  Everything is possible.   Be well.


(larawithhrt) #6

I've had a particularily difficult week and this post just hit me between the eyes. 

My diabetes has been pretty good this week, but my 8 year old who has had T1 for three years has for the first time started fighting with me over taking her blood sugars- outright refusing to do it- she is fighting me on it.

I try to be mellow about it, try not to let on the stress I feel for her- 

So your thread hit hard.  I can handle my diabetes, but to see the little ones have it- and my own daughter.

I get so many comments from people that I must be an inspiration to her because I have had T1 for 26 years, live a healthy life, exercise- basically not let it stop me from doing things- and I say "Yes, thank you"  and all that is true- But you all know the dark side of it too- I don't need to elaborate.  So today it is upsetting me ALOT that my daughter has it.  Just a super difficult day and last couple of weeks- and now she is crying for a snack- got to go- and she won't want to test for it and really it is close to dinner so am going to have her wait (she isn't low) and she just started crying because I said no (now I know alot of kids do that anyway, but it is much more complicated with the diabetes)  I got it at 17 too so it is hard to relate to a 8 year old who has it.  I don't know what to tell her sometimes. 


(paulg765) #7

Hi Laura,

Yes I know what you're going through.  We have a lot in common.  Like you, I've had Type 1 since the age of 17 and like your daughter, my son Max became Type at the age of 5.  Max is 26 now, living on his own in Boston, with a good job and taking good care of himself.  So let me just say, as my Dad always used to say, "This too will pass."  Having said that. and I know this is more easily said than done, you try and focus ONLY on the present, this moment, the now.  Try not to dwell on the difficult week you've had and try not to anticipate what you might go through later.  Be present in the moment..., completely attentive to your daughter.

You KNOW what has to happen whether your daughter likes it or not.  She must test her sugar before she has a snack or dinner.  She may cry, but this is what's best for her.  Focus on what you have to do and what you are doing.  The most important thing is what you are doing in the moment.  Do it the best you can.  Talk sweetly to her, hug her and show her how much you love her.  Make a game out of it, perhaps.  But in the end, you are the adult and you know best.  And remember, "This too will pass."

Please fill me in later.  You're doing a great job Laura.

 

Paul


(FrankD) #8

Laura:

I delayed responding because I wanted to give a Paul an opportunity to share his thoughts with you.  He and I have become friends over the past couple of weeks since I jooined this site.

I also bwas diagnosed as a Type 1 as a teenager at 18 during my sophomore year at college.  That happened to have been just shy of 48 years ago in 1962.  We have had two children, neither of whom have been found to be diabetic.  So, in that respect, I differ from both of you, each with a child who is a Type 1.  In that respect I am so fortunate.

What can any of us say?  Paul said a lot of it - love, hug, stay close, encourage, be a cheerleader.  While it is tough to amnage. I know what was not done well by doctors and my family.  They wrang their hands with the "why you" sort of stuff.

I suggest that you think about every way, including diabetes, that your daughter is "special."  Encorage her to think of herself as speciial, not different, but special.  Consider telling her that she is special because the disease that she has requires courage and that she is showing that courage.  

There is much more I can think of that I'd like to say to you about dealing with your daughter's difficulties, but I'm not a counsellor.  All diabetics, but particularly cnildren need  and their parents need capable and understanding cousellors who can help  I do not know whether there are any such professionals in you rpar of California, but possibly JDRF and ADA can give you some adivce if your endocrinologists can't.

I wish you and your daughter both well and will keep you and her in my thoughts and prayers.

Frank Devlin        


(katie.clark) #9

Hi Laura - I'm sorry you are having such a rough week.  I think we can all relate and please know that you are not alone.  I was dx at age two, 32 years ago and my oldest daughter Ellie was diagnosed five years ago (her dx anniversary was on Monday - my birthday) at the age of four.  I get it. 

And like you, we get those meant to be thoughtful comments from others.  "Oh, she's so lucky to have a mom with type 1" or "at least you know all about type 1".  Seriously - did you just say that?  Lucky?  I'm trying to remember one day where I felt lucky to have type 1.

I had a really rough winter in basically the same aspects you describe.  Ellie'd had enough and was fighting and crying about pump sites and finger pokes.  Our numbers were through the roof.   My endo and her endo both said I was displaying signs of depression.  I would highly recommend talking to your endo or CDE (or even your daughter's doc) about talking to a counselor or starting on some mild anti-depressants.  This life we have is tough, and there are times that the chronic part becomes too much to bare.  You don't have to be a superstar and handle it on your own.  Get some support.   Just venting about all the stuff we have to live with once every other week to get it off your chest might be enough.  And if not, don't think you are a failure if you take antidepressants.  It is a very common complication of living with type 1 diabetes.

Our daugthers don't deserve living with type 1.  I'm doing everything in my power to cure type 1 for Ellie and for your daughter.  That means supporting others through support groups, raising money through Walks and Rides, serving as a volunteer at my local diabetes association office (I personally support JDRF).  I will not stop and I will not let Ellie ever see diabetes slowing me down. 

Take that Type 1.  Feel free to message me privately.


(larawithhrt) #10

Paul,

Thank you so much for this post.  I am saving your reply and going to pull it out and reread it when I am having a bad day/week again.

I can't tell you how much I appreciate your words and remembering that "This too will pass". 

Just having someone remind me of this and all of you T1's out there listening and relating and understanding is sooo helpful.

Laura


(larawithhrt) #11

Thank you Frank for your kind and encouraging words.  I also had to thank Paul and Katie too- Thank you so much.  It really helped.

Laura


(larawithhrt) #12

Hi Katie,

Thank you so much for your post and I think I definitely would want to talk to you more about how you get through the thing with Ellie not wanting to test.  My Julia is 8 and Ellie must be 9 so they are about the same age and it sounds like Ellie starting doing that at Juli'a's age of what I am going through now.

And, it was so helpful to read your post about the depression thing because that is something I need to be cognicent about.  more I could say, but Julia just woke up so time to go test, eat breakfast, etc....

Bye for now and thanks for the words of wisdom and encouragement.

Laura


(Belstarwon) #13

sooo just wondering after reading these I have a few questions....

I was dx'd coming up in a few months 10 years ago. I am 24 years old. Family planning is high on my mind lately. Everything i have read and from what (medical professionals) have told me, its a 3-5% chance per child that they will develop type 1 as well. They would have a higher chance (like 90%) of developing type 2 later on in their life.

After reading this, and actually knowing a great amount of people from diabetes camp who have a parent with type 1 as well, is it more common then that?

And are there anything or any sites that would say if my brother (non D as of now, he is 22) as well has a chance of his kids getting type 1....im not the only one in my genetic line on either side to have type 1. No one has ever had type 2....


(FrankD) #14

Brooke:

First of all, I wish you all the best in yur nrusing aspirations and career.. We need more diabetics entering the health professions.  The most experienced endos and nurses have no idea what it is like to be a Type 1 diabetic - as a young child, a teenager, a yound adult, or a 48-year middle-aged diabetic such as I.  Have at it and enjoy what you can contribute.

I don't have any references to send you to on the questions you psoe, and they are great ones.  Types i diabetes is very fickle - in my case, no one before me in my families and neither of our two children (at 40 and 35) or our granddaughter (at 10 months) have shown any indciation of the disease.  It is a mystery and often in my estimation the results of chance - a vulnerable gene subjected to  the right virus or bacteria, and you've got it.  On the other hand, there is a lot of evidence of genetic likelihoods although I don't believe that they are as devloped as they should be - after all knowledge of the disease dates back to the Egytpians several centuries B.C.  Not nearly enough funds and effort are being expended.

There are some sources like Joslin Clinic in Boston, Mayo Clinic, Johns Hopkins, and others which you can search.  There is also a lot of stuff available through the ADA and JDRF.  Today, the web is full of stuff, but it doesn't seem to answer the ultimate question - How, Why, and Who?  Type 2 is a lot more within an indiviual's control as I am sure you KNow.

I wish you good luck in your search.  If you find things of interest, please share them with us.  The collegial nature of these forums is great, and we need, each of us, to use it more effectively.

My experience and good fortune with our children (and that is in spite of my wife's family having a history of some form (apparently Type 2), none of our offspring show any signs. 


(Mary B) #15

I agree with Doug as well.  Diabetes has made me appreciate every day.  And to never take tomorrow for granted.  But I too am heartbroken that young children still have to hear this diagnosis.  They do have new tools that we did not.  But the end result is the same.  A lifetime of needles, blood testing, etc. I remember my dr specifically putting a girl in my hospital room with me that had just been diagnosed. Supposedly to "mentor" her.  I remember her running from the nurses, screaming everytime they had to give her an injection or check her bs.  As hard as I tried, I could not get her to understand that this was the only way she would be able to live.  All young children know is that diabetes hurts.  Sad.