No Words...

I don't know if I'm ready to do this but here it goes...

Less than 24 hours after I posted What doesn't kill you our sweet Evelyn was diagnosed as a Type 1 diabetic. Ironic, isn't it! After I post I need a break blah, blah, blah and here I am with another T1D in the house! What a slap in the face!!

So here is what happened:

Just after our Nora was dx'd in 2005 we enrolled in the TrialNet study. (This study tests for auto anitbodies to determine your likelihood of developing T1D. Is NOT definitive but we just wanted a head's up). So my hubby, myself and Evelyn all had our blood drawn. My hubby and I came back negative but Evelyn came back with 3 out of 4 auto antibodies. I didn't let the news devastate me as I used this info as knowledge. At the time she was 12 and not spending as much with us and I figured the diabetes signs would easily go unnoticed. We made it all the way to phase 3 of the study which was giving her oral insulin. About this time we found out we were preggers with Jackson (shocker) and really didn't want to give Evelyn oral insulin. I didn't have enough time to really dive into all the ramifications of putting her on this so we backed out of the study for a while. We still had her check her blood sugars when she complained of not feeling well. Years went by and nothing really happened.

Fast forward to October of 2011. We were at a JDRF Halloween Boo-Fest with lots of activities, vendors and research updates going on. Evelyn says to me, "Mom, I think I need to test for diabetes again". Fine, it doesn't cost anything...let's do it. She was 17 and college was on the horizon, not sure where she would end up so yeah, let's do it again. Results come back she's positive for 2 out of 3. (Don't ask me the difference in the 3 vs. 4 auto antibodies in the test. I questioned back then and it's all medical terminology and whatever!) So she did the oral glucose test. The Endo termed Evelyn as Glucose Impaired aka. PRE diabetes. (Yes, it exists..and yes, in relation to Type1). The Endo decided to set her up on her own meter with test strips, as we were sharing Nora's supply and running out before months end. We could have started her on an insulin regimen of Lantus, a small dose. But I was afraid of  lows and since she drives and hadn't really experienced lows, mostly highs, we declined. I knew the signs and promised to check in with any weird numbers. 

Which brings us to 5/31/12 at 11pm. "Mom, I'm not feeling good at all." Brings me her meter which reads 579!!! I look at her, instruct her to wash her hands again and retest. She does and brings back 565!! S#@*!! I have her test for ketones...negative! Wait 30 minutes...praying it was a fluke number and have her retest. 525!! Call the Endo on call. Now, I don't know about your hospital but our ER is not very well equipped for diabetes. If you have broken bones, etc. great, go to the ER. But I was dreading taking her to the ER for a diabetes diagnosis. I begged to have her go to clinic first thing in the morning but it was a no go. We head on down to the ER. Sugar in her urine. No ketones. IV saline drip. 

What's weird is no one ever said YOU HAVE TYPE 1 DIABETES. It was a lot of apologizing, you've seen what your sister goes through, etc. The medical staff had access to her records, knew she was glucose impaired and knew we dealt with Type 1 already but no one uttered those words. Talk about surreal...Evy's in tears, I'm comforting her and thinking of what I need to do to ease her into this transition. Even as I sit here writing this I feel like I'm telling you a story about someone else. It hasn't sunk in yet. I've not cried about it. I've not gotten mad at it. I'm  just NUMB!! oh, and I've bitten my nails to nubs...attractive...NOT! 

By 5am, 6/1/12, she was admitted and given her first dose of Lantus, 11 units, and first correction with Novolog. She had dropped to a blood sugar of 440. Then you all know the rest...team of Dr's, nurses, dietitians and social workers. What was nice was everyone talked to HER. She is days away from her 18th birthday and they talked to her about her diabetes. Of course hubby and I will help her but ultimately she is learning and taking on her own care.  

She was discharged yesterday and was glad to be home. Her birthday is this Wednesday and she had lunch plans with her girlfriends already in place. She wanted to cancel them. I told her absolutely NOT!! You must live your life like you do everyday, except you live it with diabetes. She hasn't cancelled plans and she has even worked her 5 hour shift at Hallmark, taken her blood sugar AND given herself injections. 

She's going to be fine.  

I have contemplated the "why us". Out of everyone in the world we have THREE kids with chronic illnesses. Are you kidding me?!?! Yes...I know...it builds character...God only gives you what you can handle...it'll make you stronger...we were chosen for a reason... Right now, I don't want to hear ANY of it. I feel like I could spew obscenities for hours if someone tells me this!! I just need to be...let it sink in...and KICK D IN THE ASS!!

I know...this is a long one...I'll wrap it up. But not before I thank each and everyone of you for being  wonderful members of the DOC. Y'all get it. Hell, many of you already have multiple children and family members with Type 1. You are my rock outside of home. You allow me to vent, celebrate and curse this horrid disease and give encouragement without saying the stupid things mentioned above. Most of all, thank you Tony, Diane and Thomas for being there in the wee hours with your love and support. You all mean the world to me! 

Nora dx'd 6-13-05, Evy dx'd 6-1-12

Dear Evelyn,

This post was written in August and never published. I saved it in draft form. I felt better just writing it and just left it alone. Then a couple of weeks ago blogger went crazy and posted it. Well, I'm officially posting it now. Enjoy!  


Hi! So your texting me from Diabetes Camp and your accusing me of not showing enough emotion with regards to your diabetes diagnosis. And...you are 100% right! Yes, you are reading this correctly...you are 100% right.

First off, I apologize. I'm not a very emotional person. You won't see me cry often and when I do I'm usually so irate that's what happens. I'm a "let's deal with the situation, look at it, see what our options are and then fix it". I can't fix you, your sister or your brother. As much as I wish I could... I CAN'T. As a Mom I can't stand the fact that I can't make it better. So what I do to cope is get involved. I'm pretty sure I drive all of you crazy with my busy volunteer schedule of all things JDRF, promoting Blue Heels, and the Hemophilia community, advocating, blogging, reaching out to people. But it makes me feel as if I'm doing something for you, your sister and your brother. I'm a fighter. I will NOT curl into a ball and cry myself silly. It does nothing for me or any of you except give me a puffy face, clogged nose and huge headache! That's why I do all those things to raise awareness for both diseases! I'm actively involved and dragging you all in this so that maybe you will learn something or at least try to make a difference to someone. It's the only way I can function. Knowing that I will NOT go down without trying my hardest to fight against diabetes and hemophilia.

Secondly, I'll probably get a little sappy here. Here is a little secret...when we met with your Endo, in December, and she's telling me your going to be diabetic, you know what I did?? I prayed. I prayed hard. And my prayer was, "God, if Evy is going to get diabetes, let it be while she is under our roof. Let me get her foundation of care set before she leaves the house". And darn it if He didn't listen. I'm humbled by that. Really. He listened to me. How do I deal with that? I don't have a clue. (Here comes the emotional part, ready?) I feel a million different things. ANGER, HATE, BROKEN HEARTED,FRUSTRATED, DEPRESSED, WORRIED, GUILTY, JEALOUS, GRATEFUL, CALM, CONTENT, BLESSED and so much more. My heart has been broken with each diagnosis I received for all three of you. A little bit of me died those days. To have had three healthy kids that now have to deal with life threatening diseases is more than I can bear to think about. The fact that I have to worry each morning if all three of you will wake up to enjoy another day is something I worry about daily. I HATE this disease...I hate ALL diseases. I so wish I didn't have a care in the world. That you could eat all day long without checking your blood sugar or giving yourself insulin. Or every fall, bump or bruise your brother gets isn't a possible trip to the ER for his medicine. I am jealous of those parents who take their kids health for granted. When a parent tells me how bad their week was because they lost their iPad, dropped their camera in the ocean and then came home to their second refrigerator not working all I can do is shake my head. I would LOVE to have their version of a bad week. I worry about your future. Dealing with diabetes during college, marriage, pregnancy, just all of it!!

But I also need to share with you why I feel grateful, calm and content (the good things). I feel that we are a closer family because of this. I feel that any one of you kids would help the other with anything. Especially in regards to their treatments of high/low blood sugar, feeling bad, injuries, etc. It has made you more aware of other people and their disabilities. You have a wonderful gift in being able to see a person and not what's "wrong" with them. In all the craziness that goes on at home I feel calm. I know that sounds weird. But at the end of the day when everybody is sound asleep and I'm blogging away; I feel calm we made it through another day! I really feel blessed. Evy, things could be so much worse. For all the worry I feel, and the ups and downs that diabetes has, I know you'll be okay. We are blessed with a house, jobs, insurance and life saving medicine. No, we don't have a fancy house, cars or clothes but we have INSULIN!!

Bottom line, I LOVE you!! I'm sorry I don't show the kind of emotions that you want me to show you. I fight hard and love fierce and would kill for you. If you are ever in doubt please read this letter over and over again. I hope that one day you will understand what I do and why I do it. Until then I'll just keep doing what I'm doing for all three of you.

Love you with all my heart,

Mom

Devil in a Red Dress meet a Rebel in Blue Heels

Blue Candles. For those of you who aren't familiar with this symbol.....the DOC (diabetes online community) show compassion and solidarity to a family who lost a loved one to Type 1 diabetes by posting photos of this candle. It's all over social media as of late.

Death. The real life true co-morbidity of diabetes. It's a  reminder of why so many of us use media and blogging and Facebook and Twitter to engage the community. No one wants to lose this war..

 My friend from *life before diabetes and kids and a mortgage* is now a pastor at a church in my hometown. He survived leukemia in high school and married a wonderful woman and settled into a life enriched by service. He and his wife and a host of other tremendous people serve as missionaries, on occasion, to Haiti and Africa. Guess what they do there?? Funny how small a world it is sometimes.....among a TON of amazing networking and compassion care for churches in those communities, they provide medicine to children....with....diabetes!

:)
Just a big ole toothy :)

Like insulin. Yeah. That is what  I'm talking about. No one is tweeting about it....no one is lamenting over a clever wall post.....they are talking the talk....walking the walk.

My friend, Mark, the pastor, was recently diagnosed again with cancer. His second battle. I rarely if ever watch any religious television....maybe because I watch PBS or Nick Jr.....even when the kids aren't in the room....but as of late, reading about another family losing a child to diabetes....or a family with three children of their four having diabetes and their father battling cancer himself.....or solar glare....high tide, something compelled me to watch Mark's sermon this morning. Maybe it was the infomercial calling people with T2 diabetes Diabesity. I won't go there....Instead....I clicked play....

Now, I won't be quoting scriptures or asking for you to come to the pulpit....I will simply share with you what I gleaned from his testimony about his current life circumstance.

Life is a valley, and the sun, and the birds, bad times, traffic, friends, burnt dinner, laughter....it is seeing that shadow in the valley of our hard times....and thanking the sun for creating it.

Finding the hope and will to find gratitude for the trials and tribulations of this disease. My child has diabetes. Many people I consider family and certainly consider my anchors have diabetes....it's our valley. That shadow of death....I will thank the sun today, for making it. Celebrating the warmth of the sun ( my DOC, you....and you...and you) for shining into the valleys of all of us. Reminding us of the light and when we are full of fear and self doubt.....shining into the valley to light our paths.

It's okay to see the shadow....to walk through the shadow. We have each other.....no need to fear.

I'll stay away from golf courses and bodies of water today....as to not attract any lightening. HA!

Love, me

"Dear Diabetes"

Another in our series of "Dear Diabetes" Letters, this one from one of our new friends & newly diagnosed as Type 1. If you would like to have your "Dear Diabetes" Letter featured, you can send it via  EMAIL     

                                          



Dear Diabetes,

You really know how to make an entrance - I mean...c'mon, did you have to show up on my vacation?
Did you have to announce yourself during the same week I got my cast off my foot?
Just when I was getting back to normal, you showed up.
Just like a bad blind date, you came into my life all loud and annoying.
I showed up in the ER with a blood sugar number of 489 & almost in ketoacidosis.
Nothing like spending 5 nights in the hospital, while my friends & family participated in a long planned river floating trip.
Oh well, I missed out.
You won that battle D.

I'm learning though, reading, preparing myself, getting all filled up on knowledge...
I'm ready to show you how I will run the rest of my life.
No fear. You don't scare me.
True, you will be a small inconvenience, I can't avoid that.
I'm sure you will spin out of control at times, make me sick, mad or tired.
You will though, at most, be a footnote, in the amazing adventure story which is my life.
You had your week in the spotlight, I hope you enjoyed it...
It's my turn to shine again!

Sincerely,

A tough running island girl

Wordless Wednesday...support

Jackson all BLUE-D up for his sisters. Support comes in all sizes. Jackson is now the same age that Nora was when she was diagnosed. When will it end? I can't answer that. But until then...we support in blue shoes, for ALL types of diabetes!

xoxo

Day 8: Wrap up!

Today is the last day of our Advocating for Another Carnival for WEGO health. Our challenge is to share what we will be planning to do moving forward.

That's easy...advocate for diabetes in BLUE HEELS/SHOES!!

It's the easiest thing to do! I'm sure we've all advocated for diabetes without realizing we even are! In fact, just yesterday, my Evelyn, went shopping at Marshall's to find a cute outfit to wear for her first day of COLLEGE!! Marshall's was in the midst of their sneaker campaign for JDRF. Sneaker campaign? Yes, participating stores sell paper sneakers for a donation and it supports JDRF. At the checkout, Evelyn was asked if she would like to donate a $1 for JDRF. Which she happily replied, "YES, I would! It's for me and my sister. We are both Type 1 diabetics" and the conversation went on from there.

See? Advocating is no big deal! (Well, it IS a big deal but you know what I mean!!)

Now that it's back to school time, how many of us advocated for ourselves or our kids to the nurse and/or the school? ALL of us!! We are well armed and will fight for ourselves or our sugar babies. Advocating at it's finest! Because if we don't, who will?

The Blue Heel Society will continue to advocate, inform, educate and rally for ALL types of diabetics. We welcome you to walk along with us in your most fab pair of blue shoes. And you never know, we may have a few surprises in our heels...stay tuned!

Day 7: Letter

Today I am to write a letter to the D.O.C. and share a story of my own with you.

Well...most of you know all my stories. If I'm not blogging about them then I'm on facebook sharing them with you as they are happening.

However, I will share one that only a few know. I'll give you a quick background...There is a fb group called Hopeful Moms. It was a group created for Moms of positive testing T1 autoantibody kids. We are a small group...very small. We share our worries, sorrows and joys of our non D kids who tested positive. And then we share the worst news ever...the second diagnosis. So, my letter goes to the D.O.C. of Hopeful Moms.

Dear Hopeful Moms,

Thank you for being there for me at 11pm on May 30, 2012. The night my eldest daughter came to me in a state of panic when her blood glucose meter read over 500. As I sat at my computer, killing time before I had to check on my T1D daughter, before finally going to bed, YOU, Hopeful Moms, were the first people I went to.  As I posted that I was freaking out at the blood sugar reading and praying it was a faulty meter, dirty hands, bad battery, surely a trick of a reading...you all were there comforting me. We shared anxious messages back and forth but I could also feel your warm embraces letting me know you where there. 

Even as I called the Endo on call that evening my iPhone kept buzzing with messages being received by you. Then as I told you we were headed to the ER for the dreaded diagnosis I felt you were all right there with me. Even into the wee hours of the night and the next morning you were checking in with me. I was living all of our worst nightmares. The tipover to the D world...AGAIN! 

Thank you is too simple a sentiment. I don't have the words to even convey how much you all meant to me that night and do to this day. And for what its worth...if any of you should happen upon the same road... please know I will be there with you too. You are my friends in D, but truthfully, I consider you my sisters, my family.

Lovingly,

Jen

Day 6: Quote, End Quote. Post.

Today's challenge is to find someone else's words to inspire me.

I found:

"Difficulties in life are intended to make us better, not bitter" - Dan Reeves

Wow! How true is this?!? I need to write this down and post it all over my house. How often do we find ourselves feeling bitter over our own or our child's diagnosis? Feeling bitter over what life has dealt us? Feeling bitter over the "why me?" mentality? Every so often I go down this road but really it doesn't do anything for me. It doesn't change the situation that I have three kids with chronic illnesses (2-have T1D and 1-has Hemophilia). It doesn't put more money into my bank account. It doesn't give me more coverage on our health insurance. It doesn't ease my mind.

So, I take my bitterness and channel it into a "when life gives you lemons; make some damn sweet lemonade!" I advocate like crazy. I'll get in anyone's face (Congressmen included) to talk about my kids illnesses. I find ways to let the public know about these diseases. Because the more people know, by creating awareness, the better chances we have, as a chronic illness community, to get money to fund research and find a cure! Does doing all this make their chronic conditions go away? Does it make my kids living with this disease any better? NO! But it's more proactive than sitting in a corner, crying, "WHY ME"!

I plead with you to think about this quote if you are feeling bitter. What one change can you make to take your chronic illness and make it better?

Gwen's Diabetes Fairytale

Day 5 Post: Once Upon a Time...write a story about your community as though you are a children's author. 

ENJOY!!

This is Gwen. She has Type 1 diabetes or T1D.

Type 1 diabetes means your pancreas doesn't work.

Gwen needs to take her blood sugar every 3 hours or more.

She also needs to take insulin in a syringe or an insulin pump.

Sometimes Gwen feels sad because she needs to stop in the middle of having fun to test her blood sugar.

Her mom finds other people with T1D online who go through the same things she goes through. This is the diabetes online community or the D.O.C.

Gwen's mom finds a mom in the D.O.C. whose daughter has T1D too and is her age!! They exchange emails and chat because they live miles away from each other. 

Gwen and her mom find they can go to the D.O.C. whenever they need help, have a question or want to share diabetes related things. This makes Gwen and her mom happy!

Gwen wants all T1 kids to know they are NOT alone!! You can find many friends and support with the D.O.C.!

WEGO Blog Carnival Day 4: From Inside The Fishbowl

Day 4 of the WEGO 'Advocating For Another' Blog Carnival I will use one of the 'Bonus Prompts' "From inside the fishbowl". People think they know what your life is like – but appearances can be deceiving. Write a paragraph about what your life looks like from the outside looking in – then write a paragraph about what it’s actually like from inside.

Looks certainly can be deceiving in our life with diabetes. In fact to anyone familiar with the struggles of addiction knows that the circle of destructive behavior is compared to insanity, and defined as "doing the same thing over and over again, and expecting different (better) results". In that context, managing daily life with diabetes in our house is plain and simple insanity. Not only because doing so 24/7/365 can certainly make one insane, but we tend to do the same thing every day thinking that if we do what we did the last time it "worked", it will always "work" the same way...but it doesn't. Many think that because of my Advocacy work, and that after living with diabetes for almost two decades, we would have it down to an art. WRONG AGAIN! It just isn't that cut and dry. Some may also think that as a Caregiver and Husband together, the Care somehow flows from me the same way my everlasting and unconditional love does for my diabetic Wife. Not quite...

What is is really like from the inside is Caregiving & Love are usually not one in the same, especially when it comes to me 'suggesting' or 'advising' my favorite diabetic on how best to care for her condition and/or body. Especially if it is a change, modification, or complete overhaul of a task related to her care. I may have been educated about every aspect possible of diabetes care, but that doesn't always mean I am ready, willing, and able to confront what needs to happen in our diabetes care, especially when there is pain involved, physical or otherwise. As a Caregiver, I may know what needs to happen. As a Husband, I am many times a bumbling idiot that cannot see the forest through the trees. For that matter, my Wife gives more care to ME & her disabled Father that lives with us and she takes care of, than I could possibly give back. In a nutshell, this combination of living with a medical condition that could kill at any time, trying to be the best Husband, Caregiver & Advocate all at the same time, isn't fun, easy or boring.

May I leave you with an example of how insane I can get. While putting together this Blog post, I keep wondering if fish can be diabetic, and just how many carbs there are in Fish Food...

WEGO Blog Carnival Day 3: Challenge Accepted!

Day 3 of the WEGO 'Advocating For Another' Blog Carnival prompts us to write about how "Leading a community isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a Health Activist." 


Let me start with the challenge of the *Stigma* associated with many health conditions, especially an invisible disease such as diabetes. This *Stigma* can present itself in different ways,including people with diabetes not talking about it with anyone at all, personally and professionally. The *Stigma* may prevent some of those not currently diagnosed to get checked, even though they may be in a higher risk group. The *Stigma* also is causing waves in the Diabetes Online Community (DOC) itself as we sometimes get sidetracked on the whole "Type" issue.

When we speak to our Friends, Fans, and Followers, the challenge of making sure that *Hope* is paramount when dealing with a life threatening medical condition on a daily...check that...HOURLY basis, as well as the dreaded co-morbidities associated with Diabetes. On a personal note, I have learned that all to well as of late. *Hope* is, and has to be, a multi-faceted aspect that should breed *Hope* among our Communities. *Hope* is an emotion that when fostered through positive interaction among our Friends, Fans, and Followers, reaps benefits that cannot be measured my Metrics or Pageviews or Website hits.

One of the other challenges I face personally when addressing our Communities is the *Separation* of how/what I do as a Caregiver in my Personal life, as opposed to how/what I do (and say) publicly as an Advocate. That may sound a bit hypocritical but let me explain. After almost nineteen years living with diabetes as my Wife's Caregiver, she know's her stuff & body a lot better than I do. I may know a bit more because part of what I do in my Advocacy work, is each week perusing nearly one thousand News articles, Education opportunities, and Research & Study findings, in order to stay up to date and informed as I carry out my Advocacy work. Sometimes as a Caregiver if I try to impress upon my Wife what I learn as an Advocate, I come across to her as the 'Diabetes Police' and things can get ugly.

The Prompt is to talk about three things, but allow me to quickly talk about another challenge that can be the most frustrating. The challenge of taking what we do as an Organization and what we present online, and getting people to take it to the Outernet (offline), and carry our Message & Mission forward to the masses, or what sometimes is called 'In Real Life (IRL)'. This challenge is very frustrating, but well documented, and is usually called "Slactivism". Don't get me wrong, I am just as guilty and it isn't really a negative thing, it is just that it is much easier for us as a Community to click a 'Like' button, digitally sign an online Petition, Copy/Paste to share, etc.

It may not be all 'Sunshine and Ice Cream', but I would never quit doing what I do, or what we collectively do as an Organization, because the satisfaction  ALWAYS outweigh the challenges we get from having the humble honor of leading our Communities. Without our Friends, Fans, and Followers, we would be nothing.

T.R. Moore, Chief Communications Officer
Blue Heel Society

Day 2 post: fave things/silver linings

Today's challenge is to write 5-10 favorite things about your community. Well, I think I covered that pretty well with my post from yesterday.

So, I'm blogging a bonus: Silver Linings; what unexpected joys, lessons, experiences, or blessings have you found in caring for someone else?

This is hard because with every silver lining there is a storm cloud...I'll try to stay with the silver lining!

The first silver lining that comes to me is my family is super close. As most of you loyal BHS readers know, not only do I have two Type 1 girls (one of which was recently diagnosed), I also have a hemophiliac son. The fact that I have three kids with chronic illnesses can do one of two things. It can make you or break you. In our case it has made our family stronger. Now, please, don't think our family is all rainbows and unicorns!! It's actually far from it! But as a family unit...our core is STRONG!!

Some other silver linings are:

Mentoring to others

Maturity for my kids (this is a storm cloud too...having chronically ill kids makes them grow up way to fast)

Community for us all

Independence for my kids (another storm cloud but silver lining too!)

Advocating with my kids (never thought I'd be political!)

Being involved with my kids (they may say that's a storm cloud, sometimes!)

Empathy to others

Being strong enough to know I CAN take care of my kids

This was a good exercise for me to really think about the GOOD in the everyday things I do to keep my kids alive and safe. Sometimes we get so wrapped up in the storm cloud that we don't even see the silver lining. So I challenge you, the reader, to find YOUR silver lining!! HINT...it might be right in front of you!

Day 1: Portrait Post

Blue Heel Society has decided to participate in another WEGO Blog Challenge for the week. It runs Tuesday-Tuesday. Hope you enjoy!!

Today I am to write a descriptive portrait of my community. Share qualities that make them, them! 

Now to describe the DOC (Diabetes Online Community)...

First off...you are all my rock!! 

You are the first people I share the highs and lows, quite literally, of diabetes. No matter what time of day or night it is I know you are but a key stroke away. 

When our second daughter was above 500...guess where I went? Yep, the DOC. There were two ladies, in particular, that even though they were MILES away from me, were there for me. Checking in and surrounding me with love when I told them of my daughters diagnosis. I will never be able to thank them enough! 

And it's not just for me...I've seen us all rally around each other. Be it a newly diagnosed member, a Mom/Dad/Caregiver doubting their abilities, pump/cgm advice...you ask it, you'll get a TON of response or a shoulder to lean on. 

Some other descriptions of our DOC community:

                                              HOME           LOVE           HOPE          

                                         HUGS         MAMA BEAR        FAMILY

I have a great, supportive family but they don't quite get the everyday trials and tribulations of raising three kids with chronic illnesses. They are there for me. They lend an ear and a shoulder if need be but if you don't walk in my shoes you don't get what I do and that's okay, however, sometimes it's just nice to have someone "get it"! and YOU all know it, live it and get it!! You are my family, my home. You show love, hope and give hugs if and when needed. And the Mama Bear? Oh, the Mama Bear don't care...she'll come out at a moments notice for ANY of our T1 kids. Why? Because we are family! If there is silver lining to any of this daily diabetes crap we put up with, it's the DOC!! 

Wordless Wednesday - World Diabetes Day is coming

Guest post - "Dear Diabetes"

The Blue Heel Society is pleased to share another in our ongoing series of "Dear Diabetes" letters. Today, we share the following from the newest D-Blog on our Blogroll "We Do Hard Things":

Dear Diabetes,

I hate you. Not like I hate coconut or the stomping of feet in the apartment above us. My hate for you is deep. Like the hate for someone who hurts innocent children. The hate for someone who takes precious childhood memories away. The hate for someone that sucks the happiness out of the day in one split fleeting second. You, diabetes, are the most hated of all.

But guess what? You cant win. You can try to take our childs sweet innocent memories and replace them with horrible ones of finger sticks, injections, and constant doctors visits. And you can keep on trying. But I will not let this go down without a fight.

I will give my son the most normal wonderful childhood that anyone can hope for. I will replace your pain with joy, frustration with peace, hate with love.

ALL children deserve to have a childhood and I will fight you to the death to make it so. I don't care if it takes every ounce of life within me. You will never win. 

Sincerely,

Your WORST Enemy

Reposted with permission from http://wedohardthings.blogspot.com

Diabetes Camp from a D Momma's perspective

This year Nora had the privilege of being a recipient of an IronAndy Foundation Diabetes Camp Scholarship!! It was an unexpected gift and one that will always hold a special place in my heart. I don't cry often but this brought me to tears. The generosity of someone who doesn't know our family and who is willing to send my daughter to camp...a blessing beyond words.

I signed her up as she gleefully (is that even a word?!) text her D friend to let her know she would be attending camp with her this year. She was so excited!! Not that long after I signed Nora up for camp, Evelyn was diagnosed. Another D Mom emailed me and let me know that Evy could attend camp for FREE and be a Counselor. Well, of course I was all for it!! I know what the DOC does for me, how much Nora values her D friends and it just seemed that Evy should experience the same. Plus I think it's harder on her since she is 18 and starting college trying to find other diabetics her own age. So I figured, what better place to meet other diabetics than Diabetes Camp!! I worked on her...she was a little hesitant. Being gone from home that long. Away from her boyfriend...you know, teen things!! But she decided to go and I'm glad she did!! (I think she is glad she went too!)

Last week I packed them up and dropped them off at Camp Korelitz. They had to pack enough insulin supplies (site changes, syringes, reservoirs) but NO insulin OR meter. Talk about feeling naked! But the camp supplied it ALL!! I kissed them good bye put Jackson in the car and off we went! No girls, no diabetes bags and minimal worry.

I have to say, I kept expecting them to call me with blood sugar numbers. But no calls. After about the second day I relaxed realizing they wouldn't call unless something bad was happening. So I chilled. Enjoyed time with my 4 year old. Went to the pool. Played. Fixed meals. I still saved all the labels from the meals I was making ready to shout out carb totals! But they weren't there. It really is a strange feeling to serve a meal and not have to tell someone what to give themselves. Jackson does ask occasionally how much insulin he needs and then pretends to punch the numbers in an imaginary pump. He keeps insisting he has DIABETES FACTOR!! (Factor is the name of the blood clotting drug he gets twice a week!)

I was able to sleep through the night at least 3 times last week. Funny how sleeping through the night gives you so much energy for the day. I could make it through dinner without a face plant in my plate! It gave me a much needed break. In fact I vote for diabetes camp twice a year; that way the D Caregivers get a  week vacation from D every six months! Sounds like heaven...

It kinda made me sad; but just a little bit. It made me remember what life was like BEFORE diabetes. Carefree. Eat when you want. Sleep through the night. Not feverishly looking up carb counts for restaurants on Calorie King. (I can't tell you how many times I get looks at the dinner table from my well meaning family members thinking I'm checking my emails or surfing the net when I am trying to find a count for something that most everybody has already eaten!). Easier times for sure.

Sunday came and it was time to pick the girls up. I was excited to see them but so dreading the diabetes. Couldn't I just leave D there at camp and then conveniently forget to pick it back up? Nora had made so many friends. She even found her long lost D buddy from younger days of her going to diabetes day camp!! They hugged and didn't want to let go. Evy was in charge (with other Counselors) of 14 nine year olds! They loved her and hugged her tight. Those are the moments that make me know that it was so worth it. They will NEVER feel that way with their everyday friends at school or teammates. These D friends create a bond that goes far deeper than any friendship they will ever have or us Non-D people will ever understand.

Evy and her girls!

So I will thank the IronAndy Foundation again (I'm sure they wish I would shut up!!) a million times over for giving Nora this opportunity that we just couldn't and for giving this D Momma a much needed break!

To read more about or donate to this wonderful foundation please visit them HERE.

Enough is enough

You ever feel like you carry the weight of the world? OF COURSE YOU DO!! Your only human AND your a freaking full time pancreas to one if not more of your children!!

Well today I cracked!

It is hard to be a full time pancreas, care giver, disciplinarian,maid, grocery store diva, domestic goddess, damn CEO of a family when your kids need special medical attention. All three of them. You become their punching bag. The  Nagger...the one who won't shut up about diabetes. Oh, and cle an your room and put your clothes away and don't forget to check your blood sugar!! I know it seems as if I keep coming at them to do all these things that normal kids have to do...like chores and then you throw D on top of it all and I become the "Evil" one.

I have pretty thick skin. I can take a lot and let it just roll right off me. Especially because I have freakishly nice behaved kids. So when they do snap at me, it's rare and kinda catches me off guard. Things had been escalating since Thursday evening and I just had had enough!!

Here's my deal. The kids can sit here and whine, complain and get mad about D and I'm fine with that. Heck, I'll join in with them! I don't blame them. I want them to be able to express how they feel about diabetes. We don't sugar coat it...they know they face life and death daily. But the minute you disrespect me...I'm done! So my poor hubby got the proverbial "kick the dog" from yours truly. I'm not happy about it. But I basically told him I was done with being crapped on by the kids.

I just need to have someone jerk a knot in the hormonal teens tail when needed, an ear to listen to, someone to commiserate with, HELP with the 3am checks so I could sleep! I have taken on the role of artificial pancreas x2 but a stand in "today's full time pancreas will be played by xxx", even every once in a while, would be nice and without me asking. Don't get me wrong...my hubby is GREAT!! Love him to pieces and maybe I should have spoken up earlier instead of snapping. It was all in the delivery and for that I'm sorry JoJo!

However, I won't feel bad about letting it out. I have been beat up and grated on and had to let it out!! I guess next time I'll go use our real punching bag!!

Scary mail...but she's alright...

We've been getting some interesting mail lately now that Evelyn has been diagnosed. My husband works for a company who provides another company to help you manage illness, disease, pregnancy, etc. We, I mean Evelyn, since she is 18, have received some very informative book/pamphlets. One book was a basic diabetes handbook of sorts. Explaining Type 1 and 2 (and I must say, they did a very good job of it!). Do's and don'ts of diabetes health and care. But this last little pamphlet came and it was weird. Now, this ain't my first rodeo, so I don't know how I would react NOT knowing what I know now.

So here it is:
set scene...

Adult woman laying on a pillow, supposedly in her bed, with the caption: "Late one night, Susanne suspected she was suffering from a bad flu. But, she also knew she had skipped measuring her glucose. Worried and not sure what to do..."

then at the bottom of the flier:

Did you know that not checking blood sugar regularly as a diabetic could lead to acute events happening at night?

Open flier:

"...she remembered she could call the Manage Your Health Chronic Condition Management Program for free." 

Then it says:
After talking about her symptoms with a nurse care manager, she learned she was alright. yada, yada, yada...

I think this might have scared me to death as the mother of a newly diagnosed diabetic!! Acute happenings at night...like what?!?! Coma, death? It doesn't say!! But she's alright!

Now, seven years ago, after Nora's diagnosis, I received a call from this Manage Your Health. Telling me to call them with any questions etc. I politely declined saying I live 20 minutes from a start of the art Children's Hospital and would turn to them and my child's Endo if need be. They kept insisting that it was free and to call them when I needed help. That's great but 1. I don't know who these people are 2. They don't know my child 3. Could you imagine me taking their info and it conflicted with what her Endo wants to do?

 Really, I don't know if we are lucky and can call down to the Diabetes Clinic with questions. I can email her Endo and get a reply within a day or if its urgent I call the Endo on Call after hours BUT most of all...Susanne, your alright?!?! Did the Nurse Care Manager tell you, you needed insulin and how much to give based on your personal insulin regime??? Did she tell you to check for ketones?? Did she instruct you on how to get rid of said ketones?? Oh, that's right...it says she's okay.

Maybe, for fun, I should call and see what they say...they should say: "CALL YOUR REGULAR ENDO!!"

But, we are alright!!