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