Archive | March 2013

Who am I and how did I get here?

Ever wake up one day and feel completely numb, powerless and very much in a life/death struggle?

I believe I am in the midst of a battle just like that now.  I feel weak, tired, bitter, angry and powerless.  I don’t like it. I like control, I like strength, I like certainty, I like progression.  All those things I ‘like’ are absent from my life at this exact moment…it’s true.  I cannot seem to find any shard of the old ‘me’ lingering around.  She seems like such a stranger.

I read some of my old blog posts, and catch myself wondering ‘who the heck is that woman?’ I don’t even remember being so full of conviction and wonder how the heck I was so strong?

I long for that.

I exist only to exist…I am numb, tired and aching for that comfort I once felt.  Life is uncertain, life is unpredictable…and a year ago I sure didn’t expect to be where I am today.  Odd…because back then I was sure I would be some where even greater.

How crazy.

Don’t get me wrong.  I am not in this deep depression, feeling only darkness.  I am just ‘lost’…I have just lost my essence of strength for the time being, and that is completely normal, I know this.  But I do feel powerless right now.

I look around and think is this really me?  Is this how I am going to be? Worn down, tired, scared, bitter (but hopeful)?  How did I get here?

I know I navigated through many circumstances to get to this exact spot.  I also know I am meant to be in this exact spot for some reason, but it doesn’t make it any less painless.  Knowing this doesn’t make right now okay.  I can never be ‘okay’ with my right now and what we are facing.

*sigh*

deep breath.

I have a lot to be thankful for.  My husband, my kids, Elvis the most amazing D.A.D, life in general, many small blessings, good friends…there is a lot out there.  And trust me, I am beyond thankful for it…but being thankful for those small things doesn’t help the bitterness fade (just yet).

I don’t like what we are facing.  I don’t like not having answers.  I don’t like seeing my daughter struggle and her ability to even feel safe start to vanish only moments after feeling freedom from the world.  It isn’t fair.  I am complaining…It isn’t fair! I have wondered ‘why her’ so much lately it is unreal.  Really, WHY HER?  Why do we have to be facing a rare mystery? Why do we have to worry about massive crashes into hypoglycemic crisis without warning, why us?!?!  WHY can’t I take it from her?

I have talked about nights holding me prisoner in the past…multiply that by one million and you might get the idea of my fears right now.  What would I ever do without Elvis right now watching over her literally day and night??? What if he wasn’t in our home?  what if???

Why do my other children have to see this epic fight?  Why does Jared have to feel scared for his sister pretending to put on a brave front?  Why does he deserve this added pressure? Why should he feel obligated to be his sister’s keeper, that is massive responsibility for such a young boy.  Breaks my heart.

My heart is beyond shattered.  I am desperately trying to pick those pieces up but I feel like every time I gather them they fly out of my hands.  I am endlessly trying to catch each shard before it shatters into a million other pieces.  I don’t like this feeling.  I don’t like this spot.  I don’t like our choices right now.  I don’t like watching people go through this.   I don’t like not having control.  I don’t like not being able to somewhat ‘plan’.  I don’t like this one bit…I HATE it.  I hate pretending like it is all okay, because right now, it doesn’t feel okay.  I am not okay with this hand we have been given.  It feels impossible…the ultimate test of faith is watching such a struggle and even just remotely entertaining the slightest sliver of faith.

Strength, where have you gone?

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Single worst moment…

I am going to just write…I can’t edit right now, I just need to write and get it out there for now.  so please excuse the mess…Editing will come at a later date.  For now, just to get through, I must just write and let it be…my darkest fear, and worst reality just came full circle.  i am sharing a very sensitive part of my life, in hopes to at least reach one person who needs to read this.  This is me…raw.

The single worst moment of my life.  It’s easy.  I can pin-point that moment down to the day, hour, even.  I have thought and thought and thought about this moment this past week, images ingrained on my brain now and they continue to flash across my eyes at any given moment of the day taking me by surprise…holding me prisoner at the same time.  I have sat down with several attempts to capture this moment with words and have failed every single time.  Too soon?  Too fresh?  Too real? Too scary?  Possibly it’s yes to all of the above.

Again, I sit, trying to convince myself, or coax my fingers into typing out this memory without pause, just get it over with…quick, painless, like a band-aid.  I feel sick to my stomach just staring at the few words I have managed to etch out.  I feel sick, weak, angry, tired and completely lost. I also feel the urge to share our story with others who live in the same world we do…who get our worries and struggles and know just how hard times like this can be.  I keep telling myself, even if this benefits one other person, it will be well worth the energy and effort I put in trying to push past it all.

Just breathe…one letter at a time…just breathe.  March 15th, a day of no significance, importance of meaning to us in any way. We (Kinzie, myself, and Elvis (her diabetic alert dog)) travel 3 hours away for once of her dance competitions.  We meet one of her teammates and best friends to pick up and let her spend the night in the hotel with us, so a few of the dancers can meet up in the hotel and have fun the night before competition.  It was nothing out of the ordinary, nothing too different from any other previous competition.  4 of the girls met up and goofed off and had a fun night.  3 of them stayed up late talking and just having fun (in our room).

Around 1 in the morning (might be off on time slightly) we decided to call it a night.  We did our normal routine, BG check, wash up, brush teeth, etc.  Elvis alerted low and we check…180 (180s, double check, same results).  For us that would normally be what we consider a high, and on a normal night, I would have done a small correction dose and gone to bed.  With Elvis, I listen when he tells me high or low, he knows, and he was more than adamant she was low.  So instead of dosing with insulin, I decided to listen to her dog and do a temporary basal decrease of (I believe it was 40%) for 3 hours, planning on checking in a few hours.  I lay down in one bed and the girls and Elvis lay in another. Elvis had a hard time calming down, but I thought it was because a friend was spending the night and shaking up his routine, sleeping with them.

Just before 2 a.m., just as I start to completely fall dead asleep I startle to an odd noise, but in my sleepy state I think it’s kids in the hall or something along those lines and drift back to bed to only be awakened by Kinzie’s friend ‘Kinzie’s not right!’  She was woken up by the same sound as me…it was Elvis, only she responded to that sound enough to realize her friend was in a full blown seizure next to her ( in the dark, she wasn’t even sure what was going on).

I jump up out of bed and turn on the light to only see my precious daughter in a full fledge hypoglycemic seizure, near hypoglycemic shock.  I grab Kinzie and my mind swirls, I just yell her name and feel my knees buckle from under me. I yell at her friend to call 911 and got my sister and her husband from across the room telling them I need their help right now to save Kinzie. I yank her insulin pump off her body to keep any small amount of insulin from entering her body.  I hold Kinzie in my arms rubbing glucose gel on her gums and inside her cheeks (the only thing closest to me, quickest to locate).  As I rub her seizure ends and she goes lifeless.  No blinking, no breathing, no nothing.  During this time my sister, and her husband are locating her glucagon shot and prepping it.  All I could think of was not to stop, keep doing gel and glucagon knowing this was a natural protection mechanism with a hypoglycemic seizure…but I was scared as hell.  I was frantic, petrified, pissed, angry and so stinking emotional. I couldn’t even speak clearly but thank God my body and mind knew what to do and was on autopilot. Being a nurse, I have handled several emergent situations…handling a life or death one with my daughter in my arms depending on me is completely a different playing field.  I could never describe how I felt, what went through my mind…no words can ever put to justice any of this.  I continue gel and administer glucagon shot (turning her to her side in case she vomited). She wasn’t responding (shot would take 10 -15 minutes) so I whipped out my next tube of gel and continued. I begged to see any sign that she would be okay…I cursed T1D, I cursed…and cursed…and cursed.  (yeah, my not so shining moments during this all).  I saw life coming back into Kinzie’s eyes as I am rubbing the second tube on her gums…and I KNEW we helped her in time.  She wasn’t responding appropriately but I knew she was coming to. She became combative and despondent…but that was okay! My baby was breathing, she was moving, and she was FIGHTING! I had already claimed victory. When I knew she would be okay.

During this time, as Kinzie shuts down, Elvis curls into this tight unresponsive ball, almost mimicking Kinzie.  My heart tanks.  I ask my sister to stay with him and help him, reassure him, etc.  When Kinzie starts coming to, Elvis pops up and starts to just go completely nuts, frantic to get to her, desperate to be by her side and protect her. By his reaction, I knew she was going to be alright, I knew we did what we needed to do. My sister took Elvis to meet the paramedics down stairs to bring them up to us.  While she did that I had my brother in law continue to rub gel on Kinzie (still far from responding appropriately) so I can gather anything we may need (insulin pump, pump setting info, emergency stuff, insurance card, ID).

When the firefighters and paramedics arrived, Elvis jumped up on the bed next to Kinzie, scared to leave her side. ..but, the nightmare wasn’t over.  The first responders walk into the room asking what an insulin pump was, what happened, if she took oral medication for her blood glucose, what her normal blood glucose should be…oh the list goes on and on.  At one point one said ‘so you think she had a seizure?’  ‘Uh no! I KNOW she had a seizure!’  They were walking into the room after all emergency actions had correctly taken place and my daughter was coming to…so they automatically assume details.  They weren’t even taking vital signs at this point….and only started to at my prompting.  After we could get her sitting up and breathing deep her vital signs settled within normal limits.  My heart started beating again.  Long story short here, the first responders were COMPLETELY uneducated about type 1 diabetes or anything related to it.  It was disheartening and shocking.  She was clearly in better hands with me, and I shudder to think what may have happened had we not had her emergency supplies on hand with us able to take matters into our own hands….can’t even think about that reality. It was at that moment I decided to keep Kinzie with me, she was stable, not vomiting, BG 67, and slowly starting to talk.

I need to take a break right here and really, really, really, urge every reader (who has themselves or their children) with any special needs to go into their local emergency stations and educate about their needs, help prepare those workers in your community and educate, educate, educate!  I also want to take this time to remind EVERY T1D momma (or any T1D themselves) the importance of being prepared at all times.  No matter how close to home you will be, how stable your BGs have been, how long you have had T1D, how much you know….no matter WHAT, always be prepared.  Always have your emergency supplies with you.  Go over your emergency plan.  Educate those around your child (or yourself) about possible hypoglycemic crisis…you will NEVER regret being prepared and educating.  You will never have to think ‘why didn’t I?’.  Take the time, be prepared.

By 3:30 a.m. we were winding down.  Elvis started alerting ‘high’ because she was rising from the gel, glucagon, trail mix and Dr. Pepper (we got in her after the crisis).  High at this point was okay.  High was comfort.  That entire night, Elvis didn’t sleep.  He sat or stood at her side, alerting to her every movement, her every large fluctuation in blood glucose.  He wouldn’t budge his anxiety through the roof on overdrive protecting his girl.  And I sat there…so MAD that I didn’t do more when he said low before bed! But I did our normal protocol…I did what we were prepped to do and followed our guidelines set by our Endo.  But WHY didn’t I listen even more to our persistent pup?!?! Why did I let myself drift back to bed after Elvis even did a last ditch effort verbal alert???  All I could be was thankful.  Thankful for Elvis, thankful for her vigilant friend, thankful she was still here.

We checked pretty much every hour, or with every unusual breath or movement…the highest she reached was 300s, which is UNREAL after an entire glucagon shot, 2 tubes of gel, trail mix, Dr. Pepper, being off the insulin pump for a good hour and a decreased temp basal rate after reconnection.  Unreal…she must have continued tanking even after the entire event. I just couldn’t process it.  In less than an hour she tanked form 180 ( a definite number) to what they are calculating to 20’s or under.  No warning signs, no nothing, accept a persistent pup who watches over his girl day and night.  What would I do without him? Where would she be if he wasn’t in our life??? What if her friend didn’t come to spend the night?  What ifs plagued me non-stop.

Kinzie’s friend was amazing.  She did everything we asked her to do, and did it quickly.  She stood out of the way, she didn’t panic, and she held herself together.  At one point she had to help hold Kinzie’s head because she was next to the night stand nearly banging her head on the corner.  I couldn’t imagine being in that position at such a young age.  My heart aches that these two girls had to go through this…that they had to face this reality.

We were scheduled to wake up at 6 a.m.  My sister sat in the living area of the room with me, both of us refusing to sleep, refusing to do anything but take watch…both in complete tears, stunned by the nights’ events.  Both nearly paralyzed by our reality. We made a decision no matter how Kinzie felt when she woke that we were pulling her from the dance competition, it wasn’t worth the risk.  She had a solo and 3 team routines ahead of her and we couldn’t bear the thought of even letting her attempt any of it.  My head spun the rest of that night/morning…I was numb, I was terrified, I was completely and utterly thankful to have my daughter.  I laid next to her as she slept at one point holding her hand and just rubbing it, staring at her.  How would I ever live without her? How could I ever even breathe without her?  It hurt so much trying to catch my breath and she was even still here with me.  Life is unfair, life can stink…life can’t be predicted.

7 a.m. rolls around and I wake the girls.  I get her friend up to start getting ready (she had to get up early too because she had a solo as well before team performances).  The girls had probably less than 2 hours sleep.  I wake Kinzie only to tell her the decision her aunt and I had made…and Kinzie refused.  She got out of bed, walking half ways tipped over and unbalanced and slowly put on her solo costume.  In tears she kept saying ‘I have to do this! I know I can!’  She showed up at her aunt’s door and even her aunt was dead set against her even participating.  Kinzie was adamant.  She wasn’t going to let Type 1 Diabetes ever tell her when she can or cannot do something.  She has something to prove to herself.

So we set out to the venue of the competition.  Everyone trying to joke around to lighten the mood of the stark reality we all faced.  It was too close to comfort and we were all still in shock of the previous nights’ events.  That day, Kinzie had determination.  She put a smile on her face and REFUSED to let that smile fade.  She performed her solo and all her team routines.  She was achy, tired, slurred speech, sore muscles, joints and foggy mind…but kept saying ‘I need to do this’.  And she did…the entire day, she did it all. When she took stage for her solo (her first performance of the day) we all (team, coaches, team moms, etc) all watched in awe…many of us had tears streaming down our face.  All I could think was she took the stage, which is all that matters…that, is winning no matter what.  Her team placed very well in all their routines, possibly their best completion and her solo qualified as top finalist, placing 2nd runner up. My heart swelled at the massive determination and dedication she showed to herself and her teammates.  I was beyond proud; I stood in complete amazement and awe.  Fighter, she was in every essence of the word, and fighter.  As the day went on, her aches, pains, confusion, etc set in…she was really feeling the impact of the previous night. Her blood glucose kept tanking, but Elvis was on duty and kept a close eye on her and alerted every single time we needed to take action.  It was intense.

The following week, Kinzie’s body continued to feel the effects of the seizure and loss of consciousness.  Tongue was swollen and hurt from clenching down and biting it, her jaw ached so eating was a chore.  Her bones, joints and muscles wouldn’t ease. She had several follow up appointments, orthodontic appointment and lab draws.  We searched for answers as to why this happened, how it can be prevents and what we might have missed…only to come up answerless and still waiting.  Lab results still pending, no clues, nothing on her charts, trends or anything to show impending seizure and sudden hypersensitivity to insulin, still waiting, still holding our breath.  In less than 3 days her insulin needs were decreased and cut in more than half, only to continue to tank randomly.  Running her higher than normal just to try and stay ahead of the plummets, Elvis working over time.  Refusing to even sleep to watch his girl…his dedication was amazing but I worried that he was over doing it and each day his anxiety grew with mine. Prior to this Kinzie was considered ‘star’ patient, well controlled, balanced, etc.  so we had no way of even seeing what would happen.  Our Endo and CDE even stumped, ruling out all possibilities.  Sometimes, things happen without warning.  Sometimes we have no control over things…and this was one of those ‘sometimes’.  I hate it.

Our organization we got Elvis through had us scheduled for our routine 90 day follow up visit…and sent a trainer down to us immediately to help us decompress Elvis and work through all the events that happened.  They were (are) worked up over the recent events like we were, sad for us, beside us helping us process.  They phoned us, emailed us, offered support and praised us for a job well done, so proud of the puppy they placed in our home and the team work that has taken place since his placement to make him the amazing alerter and watchful companion he is…what if Elvis never came into our lives???

We are still waiting.  We are living our life the closest to normal possible, still anxious for ‘what if’ moments.  We are working closely with our endocrinologist to figure out the trigger to the hypersensitivity.  I am sleeping with kinzie and Elvis keeping watch, all 3 of us are beyond exhausted from the 24 hour checks and little sleep…all 3 refusing to back down.  Future unknown, no answers, no official plan…still waiting…still trying to just live, for now.