While I was lying sick in bed with some sort of fluish grossness, pissed off that I'm going to miss my girls weekend and thinking of all the fun that I could of had, my mind started of course to think about, nothing other than type 1. I soon realized we had a dirty little secret!
Unless you are looking for it you will not come across it.
Unless you have been touched by it you will never understand it
How many parents out there knew about Type 1 before their child was diagnosed?
I did not know anything about it and I'm sad to say neither did the 4 doctors that saw Cara and misdiagnosed her when she was "sick" right before she was diagnosed with type 1.
This is really sad because we live in an area that is experiencing a much higher rate of type 1 diagnoses than the norm. You would think that a helpful news letter to all doctors in our area, maybe a little heads up, maybe a wanted picture posted on all clinic doors be on the look out for a silent, invisible attacker that causes an increase of urinating, a desperate need for water, a dramatic weight loss and unquenchable hunger would have been sent out...something. On diagnoses we were told that there was an epidemic in our area of type 1 diabetes diagnoses. WOW that was news to us because we have NEVER heard of this!!
Why is no one sharing this very important information, why is no one sending out media reports and stats and why is no one looking for answers??
It is what it is just because??...WHAT THE HELL IS THAT!!
Again we experience this complication to our dirty little secret when we were in the hospital with Cara because of a sick day and the doctor assigned to Cara did not have a clue about type 1 diabetes. He did not know what type of intravenous fluid she should be on sugar or sugar free and did not have a clue about what to do about the high ketones she had. You would think that there would be a book on this....somewhere... in a HOSPITAL... on the PED's floor?? We went to the hospital because we were feeling overwhelmed by this flu, it was our first time dealing with a flu and type 1, which for people that don't know (hahaha see another dirty little secret) sickness's and type 1's are deadly! So we needed help and where do you turn for help when someone is sick...a hospital. Unfortunately our diabetic peds clinic was closed and we had a normal everyday non specialized doctor. By the end of that experience I lost all faith in others to take care of my daughter and it is not their fault..
for some reason the information is just not shared!?!?
Let's play a word game. I will give you a word and you tell me the first thing that comes to your mind??
First things that come to my mind are:
OK now what are the first things that come to your minds when you hear...
Diabetes or even type 1 diabetes ...
First things that comes to my mind are:
blood sugar and
One word... MEDIA!!
I'm not saying that cancer does not kill and that it does not scare the shit out of me because it does and for all those who are fighting and who have fought and who have lost the fight and for all those who will be fighting the utmost respect and love and support to you I'm not taking that away from you. This disease, CANCER demands and gets the respect that it demands... because it scares us. That is why there is soooo much support and wearing of colours and understanding and media and information for cancer. Diabetes does not have this kind of respect, diabetes does not scare us.
On Cara's diagnosis's day they (nurses and doctors) came in explaining how everything will be fine (they were a wonderful support). They told me "It's just a balancing act between food (carbs) insulin and exercise". I was also told "for good management you will need to check Cara's blood sugar through out the day".
Hmmm basically the same words from the nurses and doctors that are the first things that I came up with when I heard the word diabetes.
Did you know this:
I know,I know it focuses on type 2 diabetes but in the end, the death stat includes all types of diabetes.
Maybe that is the cause of our dirty little secret, the cause of the confusion and the hush hush on the negative and everything will be fine approach. Type 1 and type 2 get confused a lot as the paper said 90% of all diabetes diagnosis are type 2 therefore it is fair to say the most of the information out there will be about type 2. When people are talking about "diabetes" I know there meaning type 2...most of the time! However the everyday people don't know this. That is why they ask me "oh she just needs to stay away from sugar" or "so she has it really bad because she needs insulin" or "so she just needs to take a pill" and the list really does go on and on and on. Yes we share a name with a completely different disease and yes this is very confusing and very misleading. However as you see type 1 and type 2 do have something very scary in common, they share some complications of diabetes, blindness, heart, vascular and kidney disease, amputation, stoke and DEATH!!
Is it because people who have "diabetes" did it to themselves (a common thought about type 2 but we all KNOW that type 1 is NOT preventable and is not caused by diet or lack of exercise but somehow guilty by association) and people with cancer or other killer diseases are seen as victims to that horrible disease? Is that one reason for the secret?
I guess that I'm just trying to figure where we get this "it's ok" "not to worry" "no problem" mentality when talking about type 1 diabetes. Do you even know how many people say to me when they find out that Cara is type 1 "Oh don't worry, she will be fine" or "Oh it's JUST diabetes" or "If she just eats right and takes care of herself she will be fine".
Diabetes has many many dirty little secrets and I think that it is time WE start unveiling this killer... too dramatic?? hmmmm
Maybe the reason why this post is soooo upsetting to me and sooo negative is because you never know. She MAY be fine with the 24 hour, 7 day a week routine, of non stop counting and measuring and shot giving and blood sugar taking. But you know what really sucks? ...maybe just maybe even with all of this routine and hard work and staying on top of it even with everything that I try to do, it MAY not keep my baby safe and that haunts me. Every time I look at Cara my heart skips a beat. I'm so thankful that she is here with us and she is health and she is thriving but in the very very darkest and deepest part of my mind I'm waiting. I'm waiting for diabetes to show us what it's really about I'm waiting for diabetes to show me it's dirty and most darkest little secret...
TYPE 1 DIABETES KILLS.
I want people to know this and people to understand this. I'm not being over dramatic which people think when I talk about diabetes and death. We are fighting a killer every single day of Cara's life and for people to tell me that everything will be ok and that she is fine just manage diabetes...pisses me off!!
I hate the diabetes does not have the respect and the fear that I know it demands!!
I'm angry today because yesterday a mother of a wonderful 13 year old child who had type 1 diabetes learn about diabetes and it's dirty little secret, unfortunately she is not the first and until there is a cure she will not be the last. A mother lost her 13 year old daughter Eilish, to this horrible misunderstood damn disease and I'm sure that this mother did everything in her God given power to keep her daughter safe. I'm so sorry for this mother and for all parents and siblings and families that have lost their love ones to type 1 diabetes. I hope you all can feel the love and sadness that we share with you and may that give you some comfort.
Here is a link to one of type 1 diabetes dirty and darkest little secrets. I a mother of a child that has type 1 diabetes never was told about dead in bed syndrome and I had not read anything about this until I heard about a young boy Jesse who passed away in February 2010. Dead in bed syndrome
(Please do not think that this is an attack on cancer and or people who have cancer I know people, I have lost people, and I'm scared shit-less of it)