I get so frustrated when I hear the doctors, nurses, and many others say, "She can do anything she wants and can do things just like any other kids!!!" To be honest it makes me mad, sick, and just plain angry! Because it's a lie and I would like to do a play back of bits and pieces of our every day life and see how they explain their statement then.
Yes, she looks normal, but there's so much more to it than just looking healthy or normal!
Here's a recent example:
If Nevaeh can do just like any other kid I guess the other day we should have been able to go to the waterpark worry free! Instead, we had to decide how to handle the situation and prepare the day before since she is only suppose to suspend her pump for 1 hour! What!?! Yes, one hour. So I could have said ok Nevaeh have a blast for 1 hour and then we have to leave but I didn't because I want her to have fun and be normal. So instead I give her less insulin before we go in knowing she could go low because I've seen her do it before with alot of physical activity. Then at lunch I have to go out to the car. Get her pump. Reattach it. Check her blood sugar. Yes, she's high. Give correction. Does this sound normal to you? Then we get up to the food stand to order and I have Nevaeh on my hip and she is holding her pump in her hand in a water proof bag because she's still wet and what happens.......the tube gets hung on her arm and she rips the site off accidentally!!! I have no choice at this point but to tell the staff to hold my order (I've already paid), go home, get her an insulin injection because there's no use in putting on a new site if we are getting back in the water. When we get back to the park we have time to eat with twenty minutes to spare for her to swim before we have to leave for good. And I have highly educated people tell me she can do things like any normal kid!
There are many examples I could tell from only 8 months of experience with this disease! Here's a few short examples:
Several nights Nevaeh has asked me am I going to be ok? What if I go low in the night? How will you know? Is this normal?
Me pulling over because Nevaeh fell asleep in the car but I don't know what her blood sugar is and need to check it? Normal?
Nevaeh saying she's low on the way to somewhere we have to go. We pull over, check, give her what she needs to bring it up and then get to our destination late. Normal?
Snacks at 3am to bring a low up. Normal?
Checking to see if your 5 year old is breathing during the night? Normal?
And the list could go on.....
Please don't take this wrong....I believe we should have a positive outlook overall but be realistic as well!
Thank you for letting me vent a little it is well overdue. :)
The Beginning of CGM and MySentry
As most of you know we
started the pump in March and then we were told
that we could start the continuous glucose monitor 6 months later so that it's
not so overwhelming learning it all together. Well tomorrow is the day....yes
it came early because they think we are ready! We are ready but I still as a
mom am concerned about how Nevaeh will deal with it tomorrow. She is so brave
with getting her pump site on, but between you and me the needle on the cgm is
MUCH bigger!!! I know she will be brave and please pray I will be as brave as
her putting it on her!
It's also stressful knowing how much this small piece of
life saving technology can cost! As most of you know from the fundraiser we had
back in March the pump, cgm, and monitor cost over $3000 out of pocket!!! We
were blessed to have raised $1010 of that! But after reading a comment from a
mother on a forum I read say that she wish she had the money to purchase a cgm
for her daughter before she passed away from Hypoglycemia (low blood sugar)
early one morning in between checks, Justin and I decided that we would make
payments on this life saving technology for the rest of our lives if thats what
it took!
For those who don't know the CGM (continuous glucose monitor) measures the glucose level
continuously around the clock (while she's wearing it) and will send those
readings to Nevaeh's pump wirelessly, as well as, to the MySentry monitor we will have
in our bedroom! It has AMAZING benefits (there's a long list of great things) like allowing us to know her blood
sugar is going up or down up to 30 minutes before it does!!! So that means I
won't have to worry as much (be up half the night) because if her blood sugar
drops the monitor in my bedroom will begin to alarm and will continue until I
have addressed the issue!!!
I can't explain how much freedom I think this will
give us all. Nevaeh because she will be able to sleep more restfully in her own
bed (and not have to worry if she is going low or not), and Justin and I because we will start getting more quality sleep! It will give us all a little more peace of mind!
Please continue to keep us in your prayers! Most
who have never experienced first hand don't realize the toll type 1 diabetes
has on every part of your life. I for sure had no idea, but every day you wake
up it is there and effects how and when you do things. We are fighters though
and my baby girl is strong and healthier than she was 8 months ago so I thank
God for that every day! Thank you for those who listened and are praying!!!
Diabetes Blog Week: My Diabetes Hero
Today is the last day of Diabetes Blog Week and the topic is "Diabetes Hero". This one is a no brainer and is probably the simplest topic yet!
My Diabetes Hero is my daughter Nevaeh! She has been a trooper through it all! Since October 23rd she has had over 600 injections, 20 site changes, and over 2100 finger pricks!!! Not including blood work and her hospitalization! She has felt crummy half or more of those days due to highs or lows. She has had moments where she is scared of going low again, had emotions of anger, sadness, and frustration all because of this stinking disease called Type 1 Diabetes! But through it all she trusts God will take care of her and she has prayed for a pump and prayed for a cure! She amazes me each day and has been through more than I have in my lifetime! I admire my little girl for her courageousness and bravery each day she fights against this disease! If I could I would take the disease on myself for her but I can't so I just do my best to be as strong as her as I watch her deal with it like a pro!!! I love my sweet girl and am so blessed to have her in my life!!!
My Diabetes Hero is my daughter Nevaeh! She has been a trooper through it all! Since October 23rd she has had over 600 injections, 20 site changes, and over 2100 finger pricks!!! Not including blood work and her hospitalization! She has felt crummy half or more of those days due to highs or lows. She has had moments where she is scared of going low again, had emotions of anger, sadness, and frustration all because of this stinking disease called Type 1 Diabetes! But through it all she trusts God will take care of her and she has prayed for a pump and prayed for a cure! She amazes me each day and has been through more than I have in my lifetime! I admire my little girl for her courageousness and bravery each day she fights against this disease! If I could I would take the disease on myself for her but I can't so I just do my best to be as strong as her as I watch her deal with it like a pro!!! I love my sweet girl and am so blessed to have her in my life!!!
Me with My Hero, my daughter, Nevaeh!
Diabetes Blog Week: Snap Shots of D-Life
A Few Snap Shots from October til Now!
Nevaeh a few weeks before hospitalization and diagnosis. She is so
beautiful but so thin and that was a couple weeks before we went to the
hospital so you can imagine how thin she was then!
Leaving the hospital after being in ICU at the Children's hospital.
A pic we took when we got home from the hospital and the long morning of training on what to do when we get home (it was like bringing a new born home plus some with all the info they cram in)! Look how much better she looks already!
Rufus the Bear, who Nevaeh got while in the hospital along with the book about how Rufus is a friend for her to share with who also has diabetes! He has little padded spots where he can get shots and finger pricks just like her!
A painting Nevaeh made about how she feels about her soon to be pumping!
Some of the many injections Nevaeh had to endure before starting the pump! There are around 150 needles in each container and that didn't include finger sticks!
Last injection of insulin after 5 months of injections we are starting on the pump!!!
Nevaeh's first picture right after she started pumping!!!
Our first and only so far (fingers crossed) kinked cannula! Got practice on what to do when a site is bad!
Our D supplies.
We found a new purpose for crossover pocket books! They are now PUMP POUCHES!!!
We won a Give-Away from Skiddadle Bags and Too Sweet Boutique!!! These are our prizes the pump pouch and supply bag that match!!!
Our new supply bag has tons of room!!!
Nevaeh's first belly site!
Nevaeh now in the same shirt as in the first picture but so much more healthy now that we know what's wrong and she is getting insulin.
What Most Don't Know About Life with Type 1 Diabetes...
There's a lot of things most people don't know about diabetes, things I didn't know either until Nevaeh was diagnosed. But one thing that is hardest is that it never goes away and it is an all day 24 hr job (a job for the parent and child). A job that is taxing emotionally and physically! Diabetes is always lurking around every corner, every day, all day!
Most people ask me if we're ok and I want to tell them no, but then there's so much to explain of why we are not that I usually just say that we're alright. But everyday and night we experience lows and highs and some days extreme lows and highs. Everyday and night we check blood sugars and give boluses. Every night I check her through the night to make sure she doesn't go low to the point of not waking up! Some nights with stubborn lows we get only 3-4 hours of sleep! Everywhere we go we have to make sure we have her pack with supplies and a snack. Every night and everyday I have some type of thought that makes me wish a million times I could take this disease from my daughter! Thoughts about her getting her finger pricked so many times they are sore or how she has to always being connected to something (the other day she wanted to swim longer but she had to get out bc her hour's time without her pump was up)! We have tears from sites being pulled off accidentally, or her going high so fast that her belly hurts and she feels like shes going to pass out or throw up, or fast lows where she is extremely pale and lethargic! It never ends, it never goes away, we have to make the best of it and take one day at a time!
Daily Routine with Type 1 Diabetes....
12 am - Finger Prick = to make sure my blood sugar level is good for the night
* Once or sometimes more throughout the night Nevaeh gets her finger pricked and according to what her blood sugar is I either give her insulin or a snack.
Between 8:30-9am - Breakfast = finger prick, carb counting, insulin given
*Throughout the day her finger is pricked if she feels high or low or needs a snack. Then if she is high she gets a bolus of insulin, if she is low she gets a snack, and she needs a snack we count carbs and give insulin to cover the snack. Highs and lows make her feel horrible and really tired!
Between 12:30-1pm - Lunch= finger prick, carb counting, insulin given
*Throughout the day her finger is pricked if she feels high or low or
needs a snack. Then if she is high she gets a bolus of insulin, if she
is low she gets a snack, and she needs a snack we count carbs and give
insulin to cover the snack. Highs and lows make her feel horrible and really tired!
Between 6:30-7pm - Supper= finger prick, carb counting, insulin given
*Throughout the day her finger is pricked if she feels high or low or
needs a snack. Then if she is high she gets a bolus of insulin, if she
is low she gets a snack, and she needs a snack we count carbs and give
insulin to cover the snack. Highs and lows make her feel horrible and really tired!
This is something most people, who don't know someone with type 1 diabetes, have no idea about! I have so much more compassion on people with this disease! I had no idea until October 23, 2011!
Thank you for letting me share! Sometimes it just feels good to share!
Diabetes Blog Week: My Dream Diabetes Device
So day four's topic is to dream up our fantasy diabetes device!
Of course, my dream device would take all symptoms of diabetes away forever! But another device that would make me pretty happy is a All-In-One device!
This device would have her pump, cgm, bs meter, and ketone meter all in one! How awesome would that be to only have to put on one device all day! No finger pricks or ketone checks the one device could check all of that! It would be the size of a ipod touch (very light weight) with touch screen! And you could wear it for at least a week at a time before changing sites! That would be AMAZING!
I know it's not much but that would be my dream device!!! Now if someone could make it that would be even more AMAZING!!!
Of course, my dream device would take all symptoms of diabetes away forever! But another device that would make me pretty happy is a All-In-One device!
This device would have her pump, cgm, bs meter, and ketone meter all in one! How awesome would that be to only have to put on one device all day! No finger pricks or ketone checks the one device could check all of that! It would be the size of a ipod touch (very light weight) with touch screen! And you could wear it for at least a week at a time before changing sites! That would be AMAZING!
I know it's not much but that would be my dream device!!! Now if someone could make it that would be even more AMAZING!!!
Diabetes Blog Week: One Thing to Improve
Today's topic is one thing to improve when it comes to diabetes. There really are so many things my mind is feeling dizzy! But when I narrow it down to one thing I would have to say that I really need to slow down sometimes and come to reality that things are not the same as they use to be.
We can't eat on the go fast food like we use to. Besides Nevaeh not needing it it's no longer fast food when you add the checking of blood sugar, calculations, and bolus. There's no running errands fast because there is usually snack time and several bs checks along the way. I use to think getting to a destination on time, like church on Sunday, was hard enough with a child before diabetes but now when we reach our destination we need to do a bs check and sometimes even have a snack before going in. I could go on but you get the point.
Sometimes I feel bad because I will be in a hurry and get frustrated not at Nevaeh but at diabetes because of the time it is taking away from what we could be doing. But I realize that getting frustrated and not just coming to terms with needing to take our time has caused me more stress and extra stress is not what we need!!! So all I can do is keep working on it (not saying that I will ever come to terms with it) and hope that I get better at it as each day passes! I'm sure you can all relate even if diabetes is not part of your life we all need to take a step back at times, breath, and slow ourselves down!
We can't eat on the go fast food like we use to. Besides Nevaeh not needing it it's no longer fast food when you add the checking of blood sugar, calculations, and bolus. There's no running errands fast because there is usually snack time and several bs checks along the way. I use to think getting to a destination on time, like church on Sunday, was hard enough with a child before diabetes but now when we reach our destination we need to do a bs check and sometimes even have a snack before going in. I could go on but you get the point.
Sometimes I feel bad because I will be in a hurry and get frustrated not at Nevaeh but at diabetes because of the time it is taking away from what we could be doing. But I realize that getting frustrated and not just coming to terms with needing to take our time has caused me more stress and extra stress is not what we need!!! So all I can do is keep working on it (not saying that I will ever come to terms with it) and hope that I get better at it as each day passes! I'm sure you can all relate even if diabetes is not part of your life we all need to take a step back at times, breath, and slow ourselves down!
Subscribe to:
Posts (Atom)