Monday, April 28, 2014


The Bible tells us that we are sopposed to give our worries to God and rely on Him in times of need. It tells us to trust in Him with ALL our heart....not half our heart....ALL of it. So why in the world am I worrying myself? Why does my brain constantly feel like mush? I haven't written in a while and I'm sure bottling up my feelings isn't a good thing. I used to be so open on here. My feelings flowed like the river but now I'm scared to share my feelings. WHY?!? Is it because I feel I'm going to be judged? Is it because I don't like people saying "Something is always wrong with your child."...."You're always sharing your child's illnesses because you like attention."...Ummmm....NO! I don't like the fact that I have a child with a serious life threatening illness and if I could take it from her then I would. But diabetes isn't the one dealing us a crappy hand lately. Kacey has something going on and it's been going on for the last few months and I've been so scared to share it....until now. If I don't get this all off my chest and blog about it then I'm going to be the ticking time bomb that ultimatly decides to blow and it's not going to be pretty.

To my close friends in real life that know what is going on....THANK YOU for being a rock for me. Just listening to me and giving me hugs and wiping my tears has been more help that you will ever know. I also want to thank those select D-Moms that have come to my side during my time of need and just left me encouragement to pick myself up and move forward. I love you all! goes.....
October 2013...Kacey came running in to me and said she was in her room but she felt something "weird". Her heart skipped a beat and made her cough. It took her breath and scared her. I brushed it off as....she'd had caffiene and had been playing in her room. know when your heart races a little from those drinks of caffiene you normally don't have.

November 2013....It happened again! We were walking in Walmart, she coughed and had a scared look on her face. We'd just had breakfast at IHOP and she'd had two glasses of diet coke with her meal. Hmmm....ok so we're going to have to really limit your caffiene. I passed it off once again!

December 30, 2013.....Christmas Town....Busch Gardens
We were walking around enjoying the Christmas lights when all of a sudden Kacey stopped, grabbed her chest and bent over. WHAT THE HECK IS WRONG WITH YOU?!?! I pulled her by the arm and sat down on a nearby bench. She continued to cry and rock with her hands against her chest. She had a heart flutter but this time there was pain. Pain to take her breath and make her cry. My child with the very HIGH pain tolerance couldn't stand this pain. We sat there for about 10 minutes and the pain hadn't let up. So I told her maybe she should walk it off....yeah....let's get up and walk for a bit. We headed toward the front of the park and it still hadn't let up. Sooooo... (dummy me! Looking back now I wish I had taken her to first aid!)...we left the park and headed to the van. I was hoping it would let up but she said the pain was deep....real so deep that she couldn't rub it from the outside. We got to the van and I realized....I don't know my freakin way around Williamsburg! So I got on the interstate and headed to Mary Immaculate Hospital about 20 minutes away. Scared....I don't think that even begins to describe my feeling! We got to the ER and walked in to two VERY LAZY front desk workers who obviously hated their jobs. I explained she was having chest pains and instead of getting her in the back and hooking her up to the EKG right away....we spent another 20 minutes filling out paperwork and getting vitals. They finally got her hooked up within about 30 minutes of arrival and by then the pain was a dull ache and she wasn't having anything else going on. We spent 4 hours watching the monitor and she was released with paperwork to call our PCP. The next morning was a Monday. I called her PCP first thing at 8am and spoke to the nurse about what happened. Dr. G is on vacation but we will let her know and see what she wants you to do. Within the hour, the nurse called back and said Dr. G doesn't even want to see her, she wants you to call Dr. F, the Cardiologist that visits here the first Tues of every month. Well wouldn't ya know....the next day was the first Tues of the month :( Ugh! I knew we wouldn't get in so that meant 4 more weeks of waiting!

January 2014
More flutters and more pain during the whole month! I kept a detailed journal with date, time, heart flutter, pain, blood sugar, activity, food, drink and whatever else was going on. I reviewed the journal with each flutter to see if there was any common factors. Was it caffiene? No! Was it exercise or activity? No! Was it blood sugars? No! Was it something she was eating? No! Was it a specific time of day? No! She had 7 episodes during January and nothing was common. Some had pain and some didn't. Some lasted longer than others.

February 2014
By now she'd had 3 episodes during February and she saw the Pediatric Cardio on Feb 11, 2014. We really liked Dr. F and she did a very extensive exam. She listened to Kacey's heart and talked with us about what was happening. She decided the best thing to do was hook her up to a haulter monitor for 30 days and see if they could capture this episode and review what was going on. Each time she had a flutter, she was to push the button and that would let the call center know to capture that episode and then they could review it and if anything was wrong or she was in immediate danger then they would let the doctor know and call us to advise us what to do next.

March 2014
During the 30 days, she had 4 episodes. Three of them were not strong enough or long enough to be captured by the monitor but on March 10, 2014, our world was rocked! Kacey was just sitting in her room in front of her keyboard. She'd been playing for about an hour when she got the flutter. It lasted longer and this time the pain was very deep in her chest. It was as painful as the ER visit one but didn't last as long. We sat on the couch together for a little while afterward just feeling her breathing. She was taking slow calm breaths in fear that she would have another one. The next day would be the 30 day mark...the day she was to stop the monitor. Thankfully we caught something and it was strong enough that hopefully they would be able to see what was going on. We didn't get a maybe this really was nothing. Was she just growing? I know of growing pains but maybe this is related to that. Yeah, there I was just passing it off again! The next day, we got a call from Dr. F. She had reviewed all of Kacey's transmissions herself and wanted to know what was going on during the episode last night? I explained everything to her and she said well something serious was captured but she couldn't make a diagnosis yet because there could be other underlying causes. So she said she needed to discuss the results with us immediately but since we were an hour from the office she would do a phone consult. Her heart went into a V-tach rhythm in the bottom half of her heart when she had that bad episode. I had NO clue what that meant so she explained and I lost it. My body went numb like it did at diabetes diagnosis. She explained that normally with anxiety, stress, palpitations and such it happens in the top half of the heart. This was in the bottom half. She wanted labs done ASAP. She explained that several other things could cause this rhythm. Sometimes if potassium is low or other things were going on then it could cause the extra beats. She wanted us to go the same day but there was no way I would make it before the lab closed so we went first thing the next morning. They took several tubes of blood! The next few days were filled with turmoil. I had read a little more about V-tach and of course scared myself even more. By Friday, Dr. F called back with the results. ALL NORMAL! So what did this mean? This meant it was more electro involved than she thought at first. This meant it was out of her hands because Kacey had to be seen by an Electrophysiologist. There were only two in the state of VA, one at CHKD and one at UVA. Since all of her diabetes doctors are at CHKD, we decided that was the best place for her. Dr. F called and made the appointment but the soonest we could be seen was another FOUR weeks! As the weekend rolled around, Kacey continued to have episodes. Just small light flutters with no pain and then on Sunday night she had another bad one. The monitor was done, she had been unhooked and the episode wasn't captured. The next morning, Kacey went to school and I had coffee with a very dear nurse friend and fellow Christian momma. I sat in tears as I explained to her what was going on and how scared I was. As if Kacey doesn't have a crappy hand already dealt to her, this is just a mess! She encouraged me to call Dr. F back and insist on her being monitored because we both know how serious a V-tach rhythm is! I sat sobbing as my nurse friend prayed for me and for Kacey. I left there and I called Dr. F's office. I spoke with her nurse about everything and told her I was really worried about these episodes. She spoke with Dr. F and she advised us to go on and take Kacey to CHKD ER and explain she was having V-tach episodes and needed some evaluation.  So on March 17, 2014 we ended up in CHKD ER for 5 hours before finally being admitted to PICU for evaluation for the night. The nurse that came in was AMAZING and she went on to tell us her son was 24 and diagnosed with Type 1 diabetes when he was little. It was neat to have some D-Mom conversation! As she got upstairs into PICU, the nurses were buzzing because when they get patients in PICU with T1, it's usually because they're in DKA, not taking care of themselves or they've just been diagnosed. So they get very few come in there on a pump and taking care of themselves. Since her Endo is there on the same floor, they advised all the nurses that I would be staying and Kacey & I would be pushing all buttons on the pump but they could oversee what she was doing but since we were pros at this then we had the final say on everything. That made me feel really good! As Kacey was laying in the bed, we were watching the buzzing nurses outside the glass doors when we spotted a  young woman in green scrubs with a pink Ping insulin pump peeking out of her scrubs pants pocket. She came in the room with a smile and Kacey pulled out her pump. They had a pump bump moment and she was so excited! She was going to be her doctor for the night and she was explaining how she rarely gets kids in PICU on a pump so it was a special treat for her! 
Kacey was watched closely on the monitor all night including a battery of tests including bloodwork, urine tests, EKG, Xray and Echo. She was released the next day and an appointment was made with the Pediatric Electrophysiologist, Dr. R, for April 24, 2014....A MONTH! But in the meantime, they were going to hook her up to a different monitor called an event monitor. This will capture her episode when she pushes the button but it will not only capture the episode, it captures 45 seconds before and after the button push. This way they can see what is going on prior to and immediately after the button push.

April 2014
We're finally into April and things have been unbelievably calm. Was this a one time thing? Was this growing and finally gone? Nope! Two weeks into the new monitor she had another one. It wasn't bad but it was a flutter with pain. She had two more the exact same thing. On April 24, 2014, we had our appointment with Dr. R. I wasn't impressed with the 3 hour hour waiting to see him, one hour waiting for the copy of the transmission from the very first doctor (they should have had this already!!) and then one hour waiting for him to look at it and talk to us. His PA came in first and she was very young and very nice. She talked with Kacey and listened to her heart. She asked a ton of questions and took a ton of notes for Dr. R. When Dr. R finally came in to see us, he brought his PA along with another Cardio doc to listen to Kacey's heart. All 3 of them heard something in the bottom half that shouldn't be there. He discussed the transmissions with us that the monitor had captured. Since there was no reason for these episodes and nothing she was doing was bringing them on, he said next step was another 24 hour at home monitor, a treadmill test and an MRI so he could have a closer look inside. Once we did all of those, he would make a decision based on his findings. In the meantime, she was to have no physical exersion and no competitive sports. This also means no Busch Gardens and roller coasters too! He did explain that the medications probably wouldn't work in her case and she may end up having a surgery to place a device to help but we would discuss that when he got all of the results. So this was last Friday afternoon she came off the monitor with nothing captured and then Saturday......
Ohhhhhhh Saturday.....this was by far one of the scariest ones yet! We were visiting our friends like we normally do every Saturday night. Kacey was sitting at the dining room table watching her friend draw and just talking when I saw her grab her chest. I saw the scared look on her fact it was nearly terrifying! She came in to where I was and said she was having a heart flutter that wouldn't stop. "Mom! It's still going! Mom! *cough cough* It's taking my breath when it flutters! *insert tears*" This lasted for several minutes this time with no pain. She coughed, she sat up, she layed back, nothing she did seemed to make it go away! It just kept fluttering out of rhythm. You could see the fear in her face and I tried NOT to show the fear in mine. Just as we were trying to make the decision about going to the ER, it stopped....slowly it went back into rhythm. She sat quietly for the next few minutes as tears flowed down her cheeks. She pulled me to the side and whispered, "Mommy I'm scared!" I shook my head yes and hugged her. WHY? Why Kacey? She's got enough to deal with living with Type 1 in fear that she will go to bed and not wake up....WHY THIS?!?! My 14 year old should not have to live with fear like that. I know we're Christians and as a child, death DOES scare her. Death SCARES me and I'm grown. She's very aware this heart rhythm isnt right and everytime it takes her breath she said she feels like it might be her last.

Yesterday was our annual Go Kart trip with church youth...we couldn't go! Kacey was so upset because she had so much fun last year. So we chose to go to the Gem & Jewelry show instead. When we got home, she had another episode! This morning I made a call to Dr. R's office and explained to them what happened over the weekend. The nurse was sooooo nice and she said she would talk to Dr. R and call me back but he would probably want to go on and put her back on the monitor while we waited for the tests to be done. This way he could see what's happening with any other episodes since they seem to be getting worse, more frequent and longer.

So thats where we are right now....HURRY UP AND WAIT! It seems like that has been the story of my life for the last few months. I've been held in limbo and we haven't had a diagnosis until last week but we still don't know what is causing it and we may never know. Thats a tough one! It feels like have those out of the blue blood sugars and you dont know WHY you have them and there is no explanation for them. Same with what causes diabetes? We don't know WHY she is having these episodes but it's been established that it is in fact V-tach and they just have decide how they're going to treat it.

I've kept all of this off Facebook (except the message to a few D-Moms for support) and I don't want to broadcast it there because of all of the negative nellies I have on my page. I don't want Kacey reading all the comments about "Oh, my family member had this and they died." or "I know someone that had that and it went away". It's like listening to someone say "My family member had dia-beet-us and they had their legs cut off!" Ummmmm yeah, she doesn't need to read any of that and be anymore scared than she already is! I will continue to use this page as my update and outlet to talk about what is going on until we are ready to share on Facebook once we know what treatment will be.

In the meantime, please keep her in your prayers. She already has to go through life with the crappy diabetes hand and adding this into the mix just complicates things. She's so strong and so brave and she doesn't want others to see her crumble under the pressure. She likes to think she's so tough but then when she's alone with me, she lets her guard down. And even through the crappy hand and tears, she still manages to smile and bring joy to those around her. She's a light in a room of darkness and her faith for the Lord is unlike many of her peers. She stands firm on her beliefs and she isn't afraid to voice her opinion about them. She's mature on this road of responsibility and she knows right from wrong. She chooses her paths wisely and she makes me want to be a better Mom (and Christian!). She's a leader and has a strong sense of self and confidence that I've NEVER had...even at her age! She knows what she wants in life and she's a go-getter! I know this is another bump in the bigger picture of God's plan. It seems SO BIG right now and like diabetes, we're going to look back and wonder how we ever made it out on the other side but we're going to be stronger than we ever thought possible. It's easy to fall into anger, aggrivation, upset and denial. And it seems everytime I pull my Bible out and ask God to direct us, I have a sense of peace wash over me telling me it will all be just fine. Yes, it's scary! Yes, we may have a long battle ahead! Yes, there may be some things we may not be able to do again! But....we have to embrace the fact that we're thankful the monitor caught the V-tach rhythm and that we've got one of the best heart doctors in the state of Va on the case. So why should I worry? If I have God in my corner then why do I worry? Because I'm Mommy....that's why!

Thank you again if you've read my battle down this far! I do feel better for getting it out and talking about it. I miss blogging like I used to and I really need to make time to do it again since it's my FREE therapy! :) 

Much love to you all!

Monday, January 13, 2014

Site Changes

It's a word that makes my skin crawl some days. I love living in my "comfort zone" and when I have to change things within it then I feel like my whole world gets off balance. Change is a word I had to learn to embrace when Kacey was diagnosed. I didn't like it but somehow I had no choice anymore.

We've had so much CHANGE in our life recently. We changed insulin from Novolog to Apidra....we changed Endo's from a man to a woman...we sent Kay off to college and our house became a one child household...and most recently we changed infusion sets. All of these changes made me nervous (some more than others) but they were all changes for the better so I shouldn't get my big girl panties in a wad.

Our most recent change was my most nervous. Switching infusion sets was a BIG deal and not only did we switch them once...we switched them TWICE! When Kacey first started pumping, we used Comfort Shorts. These sets go in sideways and not straight in so the risk of a bent cannula lessened. These were the sets we were told to use as well since Kacey had a "little more fat" to put them in. She was scared of the automatic insert ones and I had to learn the manual insert ones. This was a learning curve for me. I've always had a fear of needles and when Kacey was diagnosed, this sent me over the edge. I cried and sobbed when the nurse told me I had to stick my own child. I could barely stand getting stuck myself because of a bad experience I had as a child. So being in the room with a needle scared the crap outta me. I learned to move past the fear because I had to keep my child alive. I learned how to insert the Comfort Short like a pro. Then this past August, Kacey wanted to learn to do her own site changes. Nervous didn't begin to describe the feelings I was feeling. How I could turn over the control? It was the last bit of control I had. She didn't like me touching her pump (since she feels its a private body part). She would show me her pump but she wanted to hold it. She has been doing her own finger sticks for years. The only thing she couldn't do was her own pump site. With the help of her amazing CDE, she learned! She started to use the Inset 30's. They still go in sideways but with the help of them being housed inside of a cocked device, it was easy for her to place them and click that button. Now what?!? We ordered a few boxes of those and then we were accidently sent 2 boxes of the regular Inset sets. As much as she cried, she used it as a good opportunity to put a site in her leg. The Inset sets still have the cocking device but the cannula goes straight in. They were a little easier to hold and click. But after a few leg sites, she went right back to the Inset 30's when they arrived. And then the dreaded day we ran was time for site change and Kacey went to the cabinet to get a set. Panic set in...she yelled into the other room, "Mommmmm, did you order more sets?" Hmmmm....ummmmm....NO! Why didn't I order sets? Because Kacey was getting the sets from the cabinet and I didn't even know we were low. LESSON #1- If you are going to take responsibility for doing your sets then YOU need to let me know when you're getting low. This resulted in a meltdown. After 20 minutes of tears, she finally decided that she had two choices...ONE: put an Inset site in her leg or other body part she had not done yet or TWO: Let me put a Comfort Short set in. She decided that she wasn't ready to try putting an Inset in her stomach yet so I put the Comfort Short in. luck would have it....I hit a FREAKING vein! She screamed and begged me to pull it out. This resulted in MORE tears! NOW WHAT?!?!? (Diabetes, YOU SUCK!) I ended up convincing her to let me stick her again and I put it in her hip. It went in just fine but she still sat there and cried for the next hour. We talked about why she was scared to try the Inset. It was the noise, the fear of the unknown and nerves. You CAN do this! I kept building her up over the next few days and then....the 3 day window was up. She was faced with the decision again. Will you put the Inset or the Comfort Short in. She chose the Inset. As she sat there and mentally prepared herself, I continued to encourage her. Seeing the ball of nerves she had worked herself up in made me so sad. She sat there for about 5 minutes with the little round inserter pressed against her tummy. And then.....CLICK! She did it! SHE DID IT! She really did it! She smiled and then started to cry tears of joy. "Mom! I didn't feel it! It doesn't hurt!" She was so proud of herself as she hooked back up to her pump. The biggest fear I had was how will this change her blood sugars? We'd been seeing numbers 200-400 range. So only time would tell! Over the course of those 3 days, we saw some AMAZING numbers! Lots of lows! Why in the world would we be told she couldn't use these? We've gotten better numbers using them than when we used the Inset 30's! It's been a few weeks now and she absolutely LOVES the Inset sets. We are down to 2 boxes and I asked her what she wanted me to order next time. Her reply: INSET, not INSET 30! Wowwwwwwww!

It's amazing to watch the progress she's made. I still sit with her during every site change, moreso for emotional support. She still sighs and mumbles "I hate this!" under her breath when it's time for the change BUT the automatic insert makes the biggest difference in the world. I know she won't ever give me control over it again and that makes me so sad but at almost 14 years old, I guess I should be happy that she is wanting to take responsibility of this nasty disease. I still do all the number crunching and it will be a long time before I let her do that on her own. Some days I know she just wants to be a kid and for now, I gonna let her!

Friday, October 25, 2013

How Will You Be Remembered?

(**warning** This post involves DEATH and DYING so if you don't want to read about that right now then click the red X in the top right corner of your page....Thank You!)

Since hearing the news about Shamae on Sunday night, I've almost a whole week to reflect and allow things to sink in. Our online group of D-Moms is such a tight knit community and many of us have never even met. Just the impact of words....daily words of encouragement...daily words to cheer you up and let you know you're not really got me thinking.

How Will You Be Remembered?

If you were to die tomorrow...or tonight even...what would people say about you? What would be written in your obituary?

Would you be remembered as the bright light? The complainer? The optimist? The smiler? The hard worker? The great mom? The great dad? The giver? The taker? The church goer? The leader? The shy one? The outgoing one? Will they say you were a good person? A bad person? Did you matter in their life? Did you make a difference? Did you care? Were you supportive?

Did you leave a legacy?

It's something we all don't want to think about....DEATH. But it's a reality that all of us will face, one day, we WILL die. Some of us sooner than others, some before their children and some after their children. It's something that we tend to stay hushed about but we really should be talking about.

If you could write your own obituary, what would it say?

I ran across an interesting video that is well worth watching! PLEASE Take the time to watch it.

Are you REALLY thinking yet? Yep! That video did the same thing to me!

I've watched the outpour of love from our online community over the last few days. I've read all the stories shared about Shamae and one thing became very clear....she was a light in our community and she was an uplifter of support. Every single one of us can say, she commented and supported us. She was involved in many of our lives, yet many of us never met her face to face. She loved her girls and Loren but she also loved us. The pictures she shared with us on her blog and Facebook showed nothing but happiness. Sure, we all have our bad days but I can't ever remember her saying a cross word about anyone.

When we die, all our loved ones are left with are memories. Are you creating those memories?

Are you prepared to die tonight? Have you made those amends and said the things you want to say? Are you living today as it was your last? You may not be given the chance to wake up the next morning. You may not make it through the drive home this afternoon. Are you ready for your family to face those things? Have you talked to them about death, your wishes and how you want things played out?

So many questions have swirled around my head and it's a huge elephant in the room that I try to avoid. I don't like talking about death but if it happens, then I want my family prepared. I don't want people to be sad...after all, getting to Heaven is a celebration and everyone should be happy. The only reason they should be sad is because they couldn't go to the glorious celebration with me.

Yeah I know, this post is a downer but I've just had so many thing swirling through my head. You don't have to be old to die. It does happen and it WILL happen. We just wait for our time but we need to be sure we're leaving a legacy.

Over the next few weeks, I want to sit down with my husband and plan things out for our funerals. It's something we haven't done in writing and I want to make sure several things are very clear in the planning. I'd also like to write letters to my children. My wishes, my hopes and my dreams for them. Something they will have to my own writing and my own words...not just what others tell them. Just so many things that I need to get lined up so they aren't left with everything to decide on their own.

Sorry for the depressing post!

Wednesday, October 23, 2013

Fieldtrip Fun

In our 504 Plan, it's stated "A parent will attend EVERY fieldtrip with Kacey". At first the school bucked me on this. Why do you have to attend? We can send the nurse with her. She should be okay for the few hours she is away. NOPE! I WILL attend and I WILL care for her while she is on the trip. Sometimes they would tell me that if I was going then I could just be a chaperone or I had to ride the bus. No problem! I will go under those conditions. place I will NOT chaperone is an amusement park. I made the mistake of doing that last year and because I was a chaperone I had to ride the bus and because I had to ride the bus then when Kacey's blood sugars went wonky that meant we had to sit somewhere and we couldn't just go home. It made a long day for her. As I thought about the whole "chaperone" thing, it made me think a little more about actually taking on that position. What if something happened to Kacey and I was a chaperone? I am responsible for an entire group of children that I now had to find someone else to care for. Is that safe? Not at a theme park! Our school lets these kids (6th, 7th and 8th grade) go off on their own and reposrt back to a chaperone at a certain time and location. Each "group" has a cell phone and they are to call if they will be late. The "group" then splits and these kids must be in pairs but I'm not crazy about this idea! Anything can happen! So I chose not to chaperone and I explained that Kacey would ride to the theme park with me in my vehicle and we would mingle with her groups of friends and when she was ready to leave then we would leave and that way if something happend to her blood sugars then I was solely responsible for just her and I could tend to her without added worry. Seems perfect, right? And then THIS happened within ONE HOUR of being in the park.....

ARE YOU KIDDING ME?!?! Check with meter revealed....
Yep! I'd say she was LOW! Crap! I had my backpack full of snacks and our cups to get filled with drink. As I reached into my backpack, panic set in! I had glucose tabs with me but NO quick sticks and NO juice boxes. OMGGGGGGG! Really?!?! GLUCOSE TABS?!?! Since Kacey got her braces, she can no longer chomp down on glucose tabs. What the heck do I do? We had just gotten off the Tea Cups (kinda like a scrambler but inside a tea cup that spins) and we are sitting on a bench and she says, "I feel like jello!" My eyes scan the little kiosks and I spot a Dippin Dots stand with a cooler of PowerAde. "Kacey, I know you HATE the taste of PowerAde but right now you have no choice but to chug it and I promise we will follow it with something yummy." So, with the blood sugar of 58 and falling, I help her stand and walk her over to the kiosk. "Can I please have a blue PowerAde? Her blood sugar is low. Here is $5!" The young girl hands me the bottle and I turn to tend to Kacey. She's standing there just looking at me as I urge Kacey to chug the whole bottle. As I turn to look at her she says "Do you have a seasons pass?" LOL! Poor girl! She was waiting to ring me up to save me 10%. Geesh...$3.50 for a PowerAde is highway robbery anyway! We sit and wait for her to come up as she nibbles the goldfish that I gave her. "Mommy, my tummy feels too sick now to eat something yummy." ***sigh***  My heart breaks for her as her friends are off having fun and not having a care in the world and here she sits with a stupid low. She can't be a normal kid. Diabetes is always there. think.....what if I wasn't on the fieldtrip? What if she was off in one of those pairs of kids? Who would care for her? How would the other child run for help? Just another validation as to WHY I go on every single fieldtrip and I don't hand over the responsiblilty to anyone else to keep my child alive. She is my child, she is my responsibility and I will gladly go on every fieldtrip.

For those that don't understand WHY I need to go....this should clear it up! Imagine your child being on a theme park ride, getting off and collapsing from a illness. Diabetes doesn't sleep. Diabetes doesn't always play nice. THIS is why we need a cure and THIS is why we advocate. When your healthy child is off having fun and riding those roller coasters, we are sitting on a bench treating a blood sugar and trying to keep Kacey safe enough to even ride those rides.

Yeah.....Diabetes....YOU SUCK!

Tuesday, October 22, 2013

In Loving Memory of Shamae

I've been a complete jumbled mess since I found out about Shamae's passing on Sunday night. I've had a hard time finding the words and this all seems like a big blur.

I didn't see all of the posts until we got home from our trip to Busch Gardens. It was about 11pm and as I sat down and begain to scroll through my newsfeed, I scanned over posts like usual...reading the important posts and scanning over the other junk of complaints. And then....the photo of the three girls...a post about the passing of Shamae. I read it....I reread it....and REREAD it! It can't be true! Someone must be talking about a friend of Shamae's....NOT Shamae! As I sat there with my mouth open, my husband was asking me to move so he could fold the covers down. I never heard him. I was zoned out....trying to register what I was reading over and over. He then yelled at me, "Jill, MOVE!" I looked up at him and the look on my face must have been bad because he came over to my side of the bed and asked me what was wrong? I handed him my phone and the tears came out of nowhere. It had sunk it and registered. It was Shamae, not a friend of hers, not a stranger...really HER! He read over the post and all I could do was sob uncontrollably. Those three girls! Her poor husband! I didn't know any details about what happened, only that she had gone to sleep and didn't wake up. But the devestation that was rocking our community was ever so present on Facebook.

I first met Shamae through my blog. She had commented to several posts of mine and although there was an age difference between our girls, they still had a connection....Type 1 Diabetes. Syd was diagnosed a few months before Kacey so we were going through those same emotions together. I would email her with problems and she would email me back. Emails became texts and texts became phone calls. We became cheerleaders for one another! Celebrating the good days and crying for the bad days. Syd and Kacey began emailing funny videos back and forth. Words of encouragement and "You're doing a great job!" filled the videos. A friendship was formed and we have diabetes to thank. Being on opposite sides of the US made it difficult for us to meet in person but we felt as if we'd known one another forever.

Today, we honor Shamae Lyon.
A sweet soul and a forever friend
Taken too soon
Leaving behind three sweet little girls....Sydney, Morgan and Hadlee
Leaving behind a loving husband....Loren

My prayers for the girls....may you always know how much your Mommy loved you. You were her world. You were her light in the dark. She revolved around all three of you. As you get older, may you all three become the loving, caring, social, compassionate woman your Mommy was. She could make someone's day with a simple post or comment. She knew how to cheer someone on when she knew they were down and out and she joined in the cheers when she knew someone was having a great day. She was an advocate and her devotion to making sure those around her were clearly educated about diabetes was infectious. It made us want to be better advocates and better mothers. May you each grow up to live healthy lives and I pray your Daddy will keep us updated with pictures as much as your Mommy did. Much love to all three of you! ((((HUGS)))

Loren...your wife was simply AMAZING! But then again, you already knew that! My prayer is that you find comfort and peace as you move forward without her. The days ahead will be tough. The days ahead will be dark. But I hope you find light and peace as you are flooded with all of the memories of her. She will be dearly missed in our Diabetes Community.

What did I learn from Shamae? If there is one thing I learned it's....TAKE MORE SELF PICTURES!
I don't take enough pictures of myself. Mostly because I am always behind the camera and because I always feel "fat" in pictures. But as I looked back over Shamae's posts and her Facebook, it's all SMILING pics of her and family & friends. She was ALWAYS smiling...even in pics when she is sick and a black eye. SMILE....thats what we all need to do more. When we leave this Earth, we have the memories that we've captured in our hearts but having the concrete photos to look back on are PRICELESS! beautiful friend...may you soar with the angels! May you watch over those beautiful girls as they grow into lovely women. May you comfort your husband from above and show him your presence. May you rest in sweet peace!


Monday, August 12, 2013

Who Cares?

What do you do when you have so much to say and no place to say it?

My head is a whirlwind and I've got feelings I need to pour out and I've thought about making my blog private to put everything I want to say out there. I've thought about starting a new blog so I can say what I want without certain people having access to what I say but since I know this blog is "closely monitored" by certain people then I will have to keep my thought to myself this time. I'm stupid for ever sharing this blog on my Facebook or ever mentioning that I write to vent. Ever since the drama that happened with it, I've never felt like I could share what I really want to say....those raw feelings we all have as Moms, Wives, Sisters and Friends. Why do I care what anyone thinks? Why should I worry that what I say would cause a war amoung friends and family? Because I'm me....thats why! I try and keep as much peace as I can before blowing and this bottle is ready to burst.

Diabetes....a life we didn't choose but a life we were given. It's a life that NO ONE can completely understand unless you are faced with it. It's a life that I wouldn't wish on my worst enemy. The daily footsteps we make in this life are sometimes the most difficult to walk with those who just "don't get it"! It infuriates me when someone judges me based on a Facebook post or based on something told to them. "Oh, it's just diabetes! It's not like your child has cancer and is facing death." child faces death straight in the eyes EVERY SINGLE DAY! I still hold my breath as I walk from my room to hers at 2am to do those middle of the night checks. I still hold my breath when I walk from my room to hers when I wake her up in the morning. Why do I hold my breath? Because I'm so freaking scared to death that I am going to be the one to find my child dead one morning. Because I'm the one who is scared that her pump is going to malfunction and not give her the insulin she needs to survive the night or that it might burst and give her too much insulin that could potentially kill her. YES, friends....IT SCARES THE HOLY HECK OUT OF ME! I worry...ALL THE TIME! This person doesn't have to worry about their kids. You child may have had a surgery or two, and when that surgery is over then your child is well again. A surgery won't make my child better. Nothing but a CURE will! So yes, it IS like she is facing cancer!  She DOES face death. One wrong move and her life could slip away in a single instant. It's so hard to get some people to understand why you're so overprotective and why you've become a helicopter parent. I am the one that keeps her ALIVE! I'm the one walking around with numbers jumbling in my head as we SWAG (scientific wild ass guess) the carbs in meals we have no carb count for. How would YOU feel if YOU had to count the carbs for every single thing that went into your child's mouth? Yes....EVERY SINGLE THING! That means....that mint, that gum, that handful of goldfish, those two cookies, and even those few fries you gave him/her... EVERY SINGLE THING! And on top of that, do you know how many carbs are in the 5 fries you just gave your child? How about that huge ice cream sundae you just made? Or what about that piece of birthday cake? Yep! Diabetes doesn't sleep so even at your child's birthday party you have to stop, make them test their blood sugar and then decide if he/she can have that big piece of cake or that small piece. How about that big Thanksgiving dinner that your child just asked for seconds on? It SUCKS! Everything about diabetes SUCKS...ok well maybe not everything because I've met some of the most amazing and generous D-Moms around. Yeah, they get it! They know what it's like to worry and be frustrated when those around us don't understand. They are the reason I am here because I would of made this blog private so no one could ever view it again but THEY CARE! So if you want to continue on your daily life of judging me then that is fine but I can only hope and pray the genetics are in your favor and that your busy healthy life isn't affected by the diabetes gremlins. I hope and pray you are never faced with the daily life struggles and the worry that we have.

How do you deal with others making diabetes seem like a head cold? Do you just ignore them? Do you educate them? Do you take those emotions and internalize them rather than vent on Facebook? Do you blog them?

That being said, it's only a few weeks til school starts and I'm getting a little nervous. We're off to a new school and a new nurse. So this means we are faced with teaching others about diabetes and Kacey's care. It's going to be a challege but I am confident it's one we can handle. Look out 8th we come!

Tuesday, March 26, 2013


"You need to make sure you're watching her feet!"
"It's important for you to inspect her feet carefully."
"Make sure you are wearing good shoes because you have to take good care of you feet."

We hear this all the time from people!

WHY is it so important to care for a diabetic's feet?

Proper foot care is very important when you have diabetes. Poor foot care could lead to amputation of a foot or leg. People with diabetes are more vulnerable to foot problems because diabetes can damage the nerves and reduce blood flow to your feet. The American Diabetes Association estimates that one in five people with diabetes seek care for foot problems. By taking proper care of your feet, most serious health problems associated with diabetes can be prevented.

I found this interesting information while surfing the internet about diabetic feet:

Wash and Dry Your Feet Daily

  • Use mild soaps
  • Use warm water
  • Pat your skin dry; do not rub. Thoroughly dry your feet.
  • After washing, use lotion on your feet to prevent cracking. Do not put lotion between your toes.

Examine Your Feet Each Day

  • Check the tops and bottoms of your feet. Have someone else look at your feet if you cannot see them.
  • Check for dry, cracked skin.
  • Look for blisters, cuts, scratches, or other sores.
  • Check for redness, increased warmth, or tenderness when touching any area of your feet.
  • Check for ingrown toenails, corns, and calluses.
  • If you get a blister or sore from your shoes, do not "pop" it. Apply a bandage and wear a different pair of shoes.

Take Care of Your Toenails

  • Cut toenails after bathing, when they are soft.
  • Cut toenails straight across and smooth with a nail file.
  • Avoid cutting into the corners of toes.
  • Do not cut cuticles.
  • You may want a podiatrist (foot doctor) to cut your toenails.

Be Careful When Exercising

  • Walk and exercise in comfortable shoes.
  • Do not exercise when you have open sores on your feet.

Protect Your Feet With Shoes and Socks

  • Never go barefoot. Always protect your feet by wearing shoes or hard-soled slippers or footwear.
  • Avoid shoes with high heels and pointed toes.
  • Avoid shoes that expose your toes or heels (such as open-toed shoes or sandals). These types of shoes increase your risk for injury and potential infections.
  • Try on new footwear with the type of socks you usually wear.
  • Do not wear new shoes for more than an hour at a time.
  • Change your socks daily.
  • Look and feel inside your shoes before putting them on to make sure there are no foreign objects or rough areas.
  • Avoid tight socks.
  • Wear natural-fiber socks (cotton, wool, or a cotton-wool blend).
  • Wear special shoes if your health care provider recommends them.
  • Wear shoes/boots that will protect your feet from various weather conditions (cold, moisture, etc.).
  • Make sure your shoes fit properly. If you have neuropathy (nerve damage), you may not notice that your shoes are too tight. Perform the "footwear test" described below.

Footwear Test

Use this simple test to see if your shoes fit correctly:
  • Stand on a piece of paper. (Make sure you are standing and not sitting, because your foot changes shape when you stand.)
  • Trace the outline of your foot.
  • Trace the outline of your shoe.
  • Compare the tracings: Is the shoe too narrow? Is your foot crammed into the shoe? The shoe should be at least 1/2 inch longer than your longest toe and as wide as your foot.

Proper Shoe Choices

The following types of shoes are best for people with diabetes:
  • Closed toes and heels
  • Leather uppers without a seam inside
  • At least 1/2 inch extra space at the end of your longest toe
  • Inside of shoe should be soft with no rough areas
  • Outer sole should be made of stiff material
  • Shoes should be at least as wide as your feet

Tips for Foot Care in Diabetes

  • Don't wait to treat a minor foot problem if you have diabetes. Follow your health care provider's guidelines and first aid guidelines.
  • Report foot injuries and infections to your health care provider immediately.
  • Check water temperature with your elbow, not your foot.
  • Do not use a heating pad on your feet.
  • Do not cross your legs.
  • Do not self-treat your corns, calluses, or other foot problems. Go to your health care provider or podiatrist to treat these conditions.

When to Talk to Your Doctor About Foot Care

Your health care provider should examine your feet at each visit. In addition, see your health care provider if you have any of the following problems with your feet:
  • Athlete's foot (cracking between the toes)
  • Sores or wounds on your feet
  • Ingrown toenails
  • Increasing numbness or pain
  • Calluses
  • Redness
  • Blackening of skin
  • Bunions
  • Infection
  • Hammer toes (when the middle joint of toes is permanently bent downward)
Interesting stuff, huh?

I was also recommended another site to purchase shoes, Dr. Comfort at I see these shoes can be very pricey but could be covered by insurance. Has anyone heard about this company or bought special "diabetic" shoes before? Is wearing special shoes necessary? Maybe one day we could afford to buy these kinds of shoes but for now we'll just wait!

I've always bought Kacey good sneakers. Most of the time we get the from Reebok (she has a wide foot and wears a ladies size 10) but when we looked into special shoes before I couldn't spend nearly $200 for a pair of shoes. She is very hard on her shoes and so we are buying a new pair every 6 months or so.

How about you all....anything else to add about "Diabetic Footsies"?

Wednesday, March 6, 2013

Endo Report Card

It's that time again....REPORT CARD TIME! Time to see how good we're doing as a pancreas. Kacey hates this visit because it always falls the week of her birthday and that always means lab work for her. She says, "It's my birthday present from the Diabetes Center!"

We got to see Nurse SJ this time and we LOVE her. We haven't been able to see her the last 2 visits so it was nice to catch up. She was surprised at how tall Kacey had gotten. She's 5'4" and still growing!

I had a chance to talk with SJ about the jump in copay for insulin and test strips. She couldn't believe they went from $60 to $125...EACH! We continued to talk about options and she told me she would like to switch Kacey to Apidra from the Novolog. They've seen some really good results with it and teens especially. She also told me that Apidra was running a special for the rest of 2013 on the insulin...$100 off your copay! So thats nearly FREE for us!! All I had to do was sign up and get the card with the number along with the new prescription. AWESOME!

Kacey's A1c hasn't changed....still 8.6% but she expects there to be a big change next visit. So like I said, this time it meant lab work for Kacey. Unfortunately we got a Lab Lady that was having a rotten day and wasn't friendly at all.

Other than that, Kacey is doing great! She wants her to try and work hard to get that A1c back into the 7's but she said she was confident that switching up the insulin was going to work.

Any Apidra users out there that can offer advice....good or bad?