Wednesday, August 26, 2015

It's NOT my disease

I've learned a few things over the years of being a D-Mom...and there's one in particular that resonates the most with where we are at in life now.

This is her disease...not mine. Yes, I have spent the past seven years injecting her, bolusing her, counting carbs, battling the ugly blood sugar numbers, stressing over things, constantly thinking about and trying to predict trends and find patterns and relentlessly searching for that perfect balance to keep her healthy. BUT, it's her disease...not mine. SHE is the one living with it. She is the one feeling the injections and feeling the effects of highs and lows. She is the one wearing the pump...having to explain what it is to those she encounters every day. She is the one living her life in spite of the fact that her pancreas no longer functions as it should.

It's HER disease...not mine. She is the one who will live with it every single second of every single day for the rest of her life or until a cure is found. I am merely a supporting player in this game. I started out holding the reigns and doing it all for her. As she is growing up, I am the teacher...showing her how things work...giving her helpful hints...offering advice...support...guidance....showing her what has worked in each situation I've encountered thus far. Soon, I will be handing the reigns completely over to her and letting her fly solo with her management....because I believe one of the greatest gifts a parent can give their child is the gift of independence.

Yes, I will ALWAYS be there for her to wrap my hands around hers whenever she needs help hanging on to those reigns...no matter how old she gets...because the job of a D-Mom never truly ends....hell, the job of a MOM never truly ends...it's a bond that can't be broken.

Yes, I feel pain when I see her struggle with blood sugar numbers...I feel pain when I change her pump site and she cries out or winces in pain. I FEEL pain when these things happen...because I am her Mom...she is my child...and what hurts her, hurts me.

BUT, it is her disease....not mine.

I feel a person...no matter child or adult...deserves the full and complete respect and acknowledgement of living with this disease. It's ridiculously hard sometimes and I will never fully understand what it is like.....

Because it's not MY disease....it's hers.
I am in awe of the strength...the determination...the acceptance...the power they exude. I think it is incredibly inspiring and I am greatful for the chance to be around the light they shine out on the world around them.

Tuesday, June 30, 2015

Crossfit or Crosstwit?

In light of the CEO of Crossfit, Mr. Greg Glassman, tweeting some ignorance about diabetes the other day....I thought I would share just a few things that I have heard over the years...so I can set the record straight.

Did she get diabetes because she ate too much sugar (drank too much juice/pop? Ate too much fast food? Ate too much ice cream? Had too many candy bars?)?

No, that's not why my kid got diabetes. In fact that's not why anyone gets type 1 diabetes. It is an auto-immune disease and her pancreas no longer produces insulin because her body one day decided to attack the cells that produce insulin. It just happened. She was only 4 yrs old and had never even had a soda before in her life actually.

Did you hear about that magic okra/cinammon/hemp seed oil/ moss that grows on a single majestic tree found in the remote rainforest of Costa Rica? It will cure her diabetes. I know because my sisters neighbours step brothers teacher from 1962 has a cat that is best friends with this one dog that had diabetes once and then he ate that stuff and now he doesn't.

Yes.....yes, I've heard of that stuff....and your sisters neighbours step brothers teachers cats best friend is a liar. Stop telling people that. Instead tell them that there is no cure yet, but you know this one chick who is raising money for people actually looking for a real cure and she sure could use your help.

Should she be eating that?

Yes....she can eat anything she wants....as long as she gives herself insulin for it.....except for poison.....and beets...cause beets are just gross.

How long has she had "diabeetus?"

Unless you're Wilfred Brimley, you're not allowed to call it that. It's "diabetes".....pronounced "dye-a-beet-eez".....and she's had it for seven years now. Long time, eh? And she eats sugar every single day. Look how healthy she looks! Weird, right?

So, when will she outgrow it?

Never. The answer is never. She will have it until a cure is found....so how about that $5 in your pocket? I'll gladly take that off your hands for you and give it to people looking for a real cure.

So, can I just get her some of that sugar-free candy instead so she can still feel included and like she still gets to be a kid?

Sure, you can get her whatever you'd like...but I probably wouldn't waste your money on the sugar-free stuff cause it will just wind up in the garbage. It still has carbs in it...so she'd still have to give herself insulin for it...and the sugar-free stuff is fake chemically manufactured gross tasting stomache inducing garbage...so I prefer to just give her the real stuff.

Awww I feel so bad for her...such a shame that she has to go through all of this...I could never do it or I could never stick my kid with needles every day.

Don't feel bad. She doesn't need pity. She needs you to learn the facts about this disease so she doesn't have to encounter ignorance every day. And yes.....yes you could do it...and you would do it. She does it every single day.

At the risk of sounding like a broken record, I just want to say that I've heard the ignorance over the years more times than I care to think about. It used to piss me off every time. Now, it just exhausts me. It makes me sigh. It makes me sad to know that people like Mr Glassman, who have even a slight amount of clout or power in their public voice, have the ability to spew their ignorance out into the world and shatter every single moment that I fought...every moment that I spoke up...every moment that I screamed and cried and shouted the TRUTHS about this disease from the rooftops. He had a fancy to tweet something that he is misinformed on...probably just to benefit his company...which lines his pockets with obscene amounts of cash.....and his tweet had the power to shatter everything I fight for every day for my daughter.

Education is EVERYTHING, my friends. If you're unsure, ask. If you want to learn, ask.

Mr. Glassman, I hope that diabetes never invades your life like it ours. I suggest you pause for a moment before you feel the urge to spread your ignorance to your followers...pause....open a book....google diabetes...call your local JDRF...ask me. I will gladly share our truths with you.

Tuesday, June 2, 2015

The Meaning of Why

You've been doing this for so long that it shouldn't bother you anymore. The ugly a1c number...the high blood sugar that won't quit...the never ending assembly line of pump site changes and needles and trying to decipher why a certain blood sugar occurred...the why of it all...the why.....sigh...the why.

In the beginning of this life, the why meant something different to me. Why did my kid have to get this? Why did this happen to her? And now....nearly 7 years later, the why is usually more of a WHY the hell did this stupid blood sugar number happen? Where did I go wrong? Did I count carbs incorrectly? Was it the rainy weather? A growth spurt? Hormones? Why? Why dammit? I just wanna know why so I can change it so it doesn't happen again!

Sometimes life seems to be a vicious cycle of why's....interspersed with making dinner and driving her to gymnastics lessons.

I'm sure I'm just having a pity party tonight...table for one! Amy, your table is ready! Nonetheless, here I am pissed off at the fact that hot tears are slowly leaking from my eyes. I'm pissed off that I feel like I failed at being her pancreas the past couple months. I'm pissed off at the ugly a1c this time. I'm pissed off that I'm letting the number get to me this time. I'm pissed off at hormones and growth spurts and the fact that pancreating an 11 yr old girl is SO hard. I'm pissed off that I feel like people don't care anymore. I feel like they expect me to always make jokes and be funny and laugh it all off. When in reality, all I needed today was for someone to hug me and say hey....you did good kid...I see you trying and it's totally ok to be pissed off for a minute.

Just because I'm not new to this game, doesn't mean that I don't ever need a moment to be pissed. It doesn't mean I don't need a hug. It doesn't mean I don't need a friend to be there for a second.

Just because I'm not new, doesn't mean that it still doesn't hurt once in a while.

Sigh.

Well, now that I got that out....I think I'll take my seat at the pity party and browse the appetizer selection....and maybe even the wine list...because, ya know.....wine not, right?

Wednesday, March 18, 2015

Under Pressure

Lately I've been thinking about the early days after Emma's diagnosis...how I would feel a lot of pressure from others about putting her on an insulin pump. It seemed like everywhere I turned, I was bombarded with people telling me that I NEEDED to get her on one...how it was so much easier...how I was missing out...depriving her of normalcy. I tried to take it all with a grain of salt...but I must admit sometimes it was a little overboard and I let it make me feel like I was a bad parent.

Now that she has been pumping for almost 4 years now, I see the same thing happening online to other people. I see the pump pushers trying to convince non-pumpers to switch over to their side. I always try to keep my distance from discussions like that unless I'm directly asked for my opinion because I remember that feeling of pressure. Yes, I LOVE Emma's Animas pump and I know that it has been a game changer and made life so much easier....but I am also a firm believer that everyone needs to do what works best for them...be it pumping or injections. If they decide to switch from one to the other...that's entirely their own decision and they shouldn't feel any type of pressure from others...fellow d-parents or doctors or anyone.

I think we have moved into a second phase of pressure these days unfortunately. I seem to be a magnet for people suggesting in one way or another that I should get Emma a CGM (continuous glucose monitor). Just to clarify, I think they are fantastic devices as well...however...Emma has made it quite clear that she does not want another device attached to her body 24/7.....so as her Mom, I must respect her wishes...because it is in fact HER body.

I'm familiar with this type of pressure now. We've been at this for a lot of years. I know that people generally have the best of intentions when they make "suggestions" as to what we should be doing or not doing in our diabetes management. I get it. It's human nature to want to help others who are going through the same experiences you are. If something works for you, of course you want to see it work for someone else, right?

I wish though....that life in our little world with diabetes along for the ride could be a little less about pressuring others to do what you do....and more about embracing the beautiful fact that we both somehow manage diabetes differently and still make it work.

Sunday, February 8, 2015

Cake

Every year when I blow out the candles on my birthday cake, I always wish for a cure for diabetes.
I see the flames twinkling and casting shadows across the pretty flowers made of icing.
I squeeze my eyes shut tight.
I say the words in my head, "I wish for it to happen this year...please let it happen this year...let this year be the year a cure happens."
Every year I do this.
I know some people probably think it's silly or ridiculous...a waste of a wish...juvenile...or stupid.
I still do it every year though.

I turned 38 today (technically yesterday now at this point of the night) and it was such an incredible day. I spent time with my little family and really saw them...I wasn't distracted by crochet orders or needing to wash the dishes in the sink...or even by the fact that I am another year older. I saw them. I saw my husband...his smile...his eyes...the way he looks at me. I saw my daughter...the dimples in her cheeks as she laughed...the light in her eyes as she handed me a bracelet and card she made for me. I saw them...really saw them.

Today was a good day...amazing actually...one that I will think about years from now and smile.

Yes, diabetes was there...it's always there...sometimes more in the spotlight than I'd like...but for the most part after all these years, I've learned how to see everything else first. I don't mean I ignore diabetes now...because obviously I don't. I mean that I have learned how to see her dimples....her eyes...the way she walks just like me...the grin that spreads across her face when she reads something funny and she doesn't know I can see her. I see these things first...I see these things in the spotlight.

No matter how many more birthday wishes I choose to use on a cure, I know that as I am saying the wish in my head and blowing out those twinkling flames....I will see her face in my mind...smiling.

Sunday, January 25, 2015

Artificial pancreas?

So, a few days ago my newsfeed on Facebook was blowing up with links to an article about a young Australian boy having been the first in the world to receive an artificial pancreas.

At first, my heart skipped a beat thinking...oh my God...what happened while I slept last night? Was it some sort of miracle? Had things progressed right along in the wee hours while I slept making this device I'd been dreaming about for nearly seven years finally reach completion and get the ok from the powers that be ensuring it's safety?

My second thought was.....no....calm down, Amy.....you know this game...you've played it many times before...stop and read the article first before you let that spark of excitement turn into a full blown raging fire. So, I clicked on it....and after the first few lines realized that it was merely a case of sensationalism. The title of the article proclaimed great things....and the actual content of the article turned out to be an explanation of how this young boy had received a wonderful new insulin pump that has the capabilities to shut off when his blood sugar was low. I was crestfallen, to say the least.....BUT....like I said...I've played this game before...I know how the media is...I know how things that seem too good to be true....likely are.

Don't get me wrong, I am ecstatic for this young boy to finally have such an amazing tool in his life with diabetes. It's a game changer for him, I am certain! It made me smile like only another d-mom can smile to see his little face sitting beside his loving parents. I love that his family can rest a little easier now that this device is in their hands.

My issue...plain and simple...is with the author of the article....more specifically, the person who thought the title was a good idea.

I know the term "artificial pancreas" can be open to interpretation. However, in my eyes...and the eyes of many who read those words....what was described in the article was not in fact an artificial pancreas...but rather an insulin pump. In my eyes, an artificial pancreas would be a device that is worn and has insulin as well as glucagon in it....it requires little to no input from the user to be functional...if the blood sugar drops too low, it will automatically dispense glucagon and if the blood sugar is too high, it will automatically dispense insulin.....essentially...it will function like a real pancreas...but....an artificial one because nothing beats the real deal, right?

I saw many friends share this article with excitement and hope and tears of joy. I saw them realize what it actually was describing in the article and their joy turned to sadness...to feeling that overwhelming sense of being let down again....and it hurt my heart.

So, I'm writing this on the off chance that any writer may come across it. What you do matters. What you do means something to so many. What you provide the world is important. Please take a minute to ask yourself if the words you are choosing are more for gaining readership and following the path of sensationalism.....or if the words you are choosing are more for providing a service...a voice...an accurate and truly honest description of something that means a lot to so many. I hope you will choose to go with the second set of words...not the shiny eye catching ones...but the real and honest ones...because THAT is what we as readers want to hear...that is what matters to us...that is what we consider meaningful.

To the writer of the article about the precious young Australian boy receiving a brilliant new device....I applaud you for sharing his story because he deserves it and we in the diabetes community love to read about members of our family making strides in this life. I just wish you had chosen a different title....an accurate one...one that wouldn't have let us get our hopes up only to be let down once again.

Words are powerful...we must choose them carefully.

Sunday, November 23, 2014

Six years, four months,and twenty-nine days

Diabetes sucked today. Plain and simple. It sucked.

Notice how I didn't say that I was the one who sucked? Yea...me too. I guess I'm making progress in that aspect. In six years time, I've learned that when numbers suck and everything seems to be going wrong...that it's not my fault...but rather that it's diabetes fault.

Emma was high all day today...all freakin day..and it took me until almost 10pm to figure out why. I kind of feel like I've just run a marathon to be honest...which is strange to say, because it wasn't me and it wasn't my body having to go through the high blood sugar extravaganza...it was hers. Nonetheless, it's how I feel right now at 10:30 on this particular Sunday night.

I realized though...that while I do know what it's like to fight this bastard of a disease day in and day out for six years, four months, and twenty-eight days.....I don't have a clue as to what it's like to fight it for six years, four months, and twenty-nine days. I don't know what will feel like. I don't know what tomorrow will bring. I don't know what numbers will show up on the screen of her blood sugar meter. I don't know if it will be another battle of highs...or maybe lows...or if it will be an average typical day of decent numbers.

I don't know. Because I'm not there yet.

Back when she was first diagnosed, I used to think ahead all the time. I used to wonder if she would be ok...if she would catch a stomach virus at school...if she'd have to endure struggles because of this disease. I would dwell on it. I would worry about it. I would get caught up in a never ending mental loop of "what ifs?"

I don't let myself live that way anymore.

I focus on today. I focus on the here and now. I live in the moment with her...because the moment is what I have in my grasp. I keep trying.

And when tomorrow comes, I will try again. I will know what it's like to do this for six years, four months, and twenty-nine days tomorrow...and that's how I will handle things then.