Spare A Rose

Life for a Child
Showing posts with label My Sister. Show all posts
Showing posts with label My Sister. Show all posts

Thursday, June 12, 2014

#tbt Diabetes Style: Multi Purpose Tongs That Boiled Needles, Flipped Bacon & Caused My Dad To Break Into O' Sole Mio"

My mom and or my dad would stand over a little tan pot with a dark brown handle filled with boiling water, one eye on the clock  & with these tongs in hand. 
My folks were still in the habit of sterilizing needles, even though by the time I was diagnosed disposable needles had hit the market and were the norm. A throwback practice from the days when they only had two children with diabetes instead of three and needles were made of glass and sharpened with a stone slate .
And in some weird way I think they found the ritual comforting.
These were the very same tongs that after being washed, worked their magic flipping bacon for 6 children and two adults.
God, it's funny what you remember about growing up - And growing up with diabetes. 

Today, these ancient tongs are still used every now and then - Like when my “real tongs” broke and lost their springiness while I was right in the middle of a veggie stir fry extravaganza. And they can still flip bacon like a badass and with chef like precision.  
Mostly though, I keep them around for what and who they remind me of. 
Also: These well worn tongs were the subject matter of a post from January of 2012 - Which I've reposted below in honor of #tbt - And the people who they remind me of every single time I look at them~
####

Diabetes Memories: Boil, Boil, Toil & Trouble - Of Boiled Insulin Needles & Other Diabetes Givens Growing Up~


With three people with diabetes growing up in the house, (four if you count my oldest sister who got married when I was 4) things got pretty crazy, not to mention expensive.
And there were certain diabetes givens in the Kunik household
Like my dad kept his insulin in the butter compartment in the fridge in the utility room, while my sister and I kept our insulin in the fridge in the kitchen.
My dad used Lente as his long acting insulin and I used NPH - And I think my sister did too.
I remember my dad, Debbie and I always busting out needles before we ate our meals, right there at the table - no matter who was at the table. That was our diabetes reality and if you ate at the Kunik table, you were bound to see some hypodermics being injected before the main course.
I remember glasses of orange juice measured out perfectly to treat a lows and the the anxiousness in which we drank down that orange juice.
I remember Tab and Fresca and Diet Pineapple Fanta and diet Orange Shasta always being on hand - Same goes for Diet Pepsi.
I remember that when I was first diagnosed, I used Sweet N Low in my cereal, while my father used something called Sweeta - A liquid sweetner that I thought was heinous.
And those are just a few of the many diabetes memories that enter my clogged mind on a daily basis!

I also have these very vivid memories of my father (and my mother for that matter,) boiling our insulin needles over the stove in a tiny little tan pot with a brown handle - which is something they started doing way before I came to be.
Because back in the Diabetes Dark Ages, needles were made of glass and required boiling and sterilization before each use. So my parents spent of time pre Kelly boiling needles over the kitchen stove.
By the time I was diagnosed, needles were disposable and came in boxes filled with at least a hundred. But my dad still boiled mine to make them last longer, which taught me a few diabetes lessons early on. Lessons like:
  1. The numbers and lines on the needle started to become faint and difficult to read after it’s been boiled a few times
  2. Much like “blunt lancets,” the more you use a needle (after you boil it, of course) the more blunt it gets!
My eight year old self would have major arguments with parents regarding boiled needles and how much they sucked.
And I remember my dad talking about the cost and then singing an intangible and entirely made up english version of O' Sole Mio in a mock yiddish accent while boiling the needles and waving the tongs around to make me laugh and get me off the subject.

Looking back now, I realize how much they had on their plate - And I’m still amazed at how they did it all.
And I’m reminded how far diabetes care has come - And how O' Sole Mio no longer applies~

Do you have any diabetes memories from growing up with diabetes?

Tuesday, April 8, 2014

In Life With Diabetes, Small Medical Advances Aren't Small At All - Nor Are They Gadgets~

Gadget: A mechanical contrivance or device; any ingenious article
1. A small mechanical  device or appliance 
2. Any object that is interesting for its ingenuity or novelty rather than for its practical use.
Synonyms: Contraption, whatsis, dohickey, thingamajig dictionary.com
Insulin pump: A pump for delivering insulin in order to achieve tight blood sugar control and lifestyle flexibility while minimizing the effects of low blood sugar (hypoglycemia). The pump is composed of a pump reservoir similar to that of an insulin cartridge, a battery-operated pump, and a computer chip that allows the user to control the exact amount of insulin being delivered. The pump is attached to a thin plastic tube (an infusion set) that has a soft cannula (or needle) at the end through which insulin passes. This cannula is inserted under the skin, usually on the abdomen. The cannula is changed every 2 days. The tubing can be disconnected from the pump while showering or swimming. The pump is used for continuous insulin delivery, 24 hours a day. The amount of insulin is programmed and is administered at a constant rate (basal rate). Often, the amount of insulin needed over the course of 24 hours varies depending on factors like exercise, activity level, and sleep. The insulin pump allows for the user to program many different basal rates to allow for this variation in lifestyle. In addition, the user can program the pump to deliver a "bolus" during meals to cover the excess demands of carbohydrate ingestion. The pump is currently the closest device on the market to an artificial pancreas.”  medterms.com

YEP, nothing novel about an insulin pump - especially if you're the person who's attached to it. And the same can be said for Continuous Glucose Monitors and the accuracy of glucose meters and test strips. 
######
Dear Elisabeth - 
I read your article in the New York Times, "Even Small Medical Advances Can Mean A Big Jump In Bills.  I’ve marinated on it for a few days and honestly, I’ve struggled with my response.  
I agree that the cost of diabetes and diabetes technologies is high (and has always been in the 36 years that I've lived with t1 diabetes,) and I'm well aware that diabetes is BIG BUSINESS. 
I find the cost of diabetes to be incredibly expensive - even with insurance - And I worry about my financial future. 
I worry about everyone living with diabetes having to deal with the same issues and concerns that I do. The financials keep me up at night. And I believe that things need to change regarding the cost of living with diabetes. 
I hesitate to start the paperwork on a new pump or CGM (Continuous Glucose Monitoring system) with my insurance company because of all the work it requires - And I'm worried about the out of pocket expense.  

BUT, as someone who hasn’t had a day off from her type 1 diabetes in 13,230 days and who knew many of the casualties of the Diabetes Dark Ages by name and personally, I'm here to tell you that my quality of my health and the quality of my life has improved greatly over the years since the advent of diabetes technology. 
And I know that my future good health depends on diabetes technology, highly engineered insulin and anything else that:
  1. Keeps me alive
  2. Reduces the risk or helps to limit future diabetes complications
  3. Gives me a better quality of life with diabetes.
In your article you stated: That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific. 

I found that statement to be callous and sensationalized and a huge over simplification of the many benefits of diabetes technology - Actually, you glossed over the benefits, BIG TIME.  
But I did and do relate to the frustrations re: to the integration and purchase of diabetes weapons. 

Still, make no mistake - Glucose meters, test-strips, Insulin Pumps, CGMs, fast acting insulin, etc., are weapons when it comes to living with diabetes - crucial ones that help us navigate the ever changing terrain of the diabetes battlefield. Without them, we'd lose the D war. 


Elisabeth - Your article made it seem as if people with diabetes didn't need or benefit from D technology  - And that's not true. 
Here’s the thing: Unlike many chronic illnesses, a large portion (8,757 hours  a year - give or take a few hours) of my type 1 diabetes care is in MY HANDS. 
So yes Elisabeth, people with diabetes absolutely need all the help we can get! 
And people with diabetes need glucose meters that provide us with graphs that chat with both our insulin pumps and our CGMs - Glucose meters and test strips that are accurate in order to properly calculate insulin via pumps, shots or CGMs and we and require fast acting insulin that quickly correct elevated blood sugar and allow us to eat when a meal is ready, instead of 20 to 30 minutes after taking it. 
And those people with vision issues because of diabetes need and require glucose meters with an audible voice. 

Personally, I would NEVER entrust my life, my health or my future health to mere gadgets Sidebar: Please refer to opening paragraph for the definition of the word gadget. 

Life and life with diabetes is far to complicated for novel gadgetry. 
Nobody living with diabetes and regardless of the type would rely on simple gadgets - But it would be great if we could. 
For those of us who remember The Diabetes Dark Ages, the time before insulin pumps; CGMs and glucose meters, life with diabetes had less precision, less flexibility and was more complicated - And led to more diabetes complications. 
We tested urine instead of blood,(disgusting and far from accurate,) had only a few types of insulin to choose from. And as far as the diabetes diet back then, it was anything but flexible. 
God, we would have given anything to have diabetes technology and fast acting insulin available to us! 
Technology like insulin pumps that allow for the customization of insulin delivery and more glucose meters/test strips and Continuous Glucose Monitoring systems and the advent of  analogue insulin .
The creation and availability of analogue insulin changed our lives for the better and allowed better glucose control, i.e.,blood sugars and meal time flexibility
All, key weapons for those of us doing battle with diabetes on a daily; yearly, weekly and decades, basis.

In the 1980’s, when my family and I received our first glucose meter - which cost hundreds of dollars; wasn't covered by insurance and was shared by the whole family shared, my parents, (my dad had t1) sister, (also a t1) and I had to meet with our pharmacist to learn how to operate the meter. 
The meter was the size of a VHS tape, took 3 minutes to calibrate and had a 44 page instruction book. There was nothing portable or convenient about it - And it was far from accurate - But it was more accurate than urine testing - And we were grateful for it.
A few years after we purchased our first meter, I lost 2 of my aunts to type 1 diabetes- they were in their early 50's. 

And I believe that if my older sister Debbie had diabetes technology available to her when she was diagnosed as a child( in the late 60’s,) or even as a teen, she wouldn’t have died from diabetes complications. Complications including; heart attacks, gastroparisis, multiple strokes and kidney failure, 22 years ago at the age of 34. 

I miss my big sister and I think about her every day - And I wish that she would have had the diabetes technology that I have available at my finger tips today - And clipped to my hip since 2002. 
And I will continue to advocate for people living with diabetes - And I'll fight tooth and nail to make sure that we've left the Diabetes Dark Ages forever. 
Sincerely, 
Kelly Kunik
t1 Person with diabetes for 36 years.
Diabetesaliciousness.blogspot.com
@diabetesalish

Thursday, January 23, 2014

Diabetes Complications & Judging One Another~

For the record, I love D moms and dads - I LOVE THEM -And I learn from them every single day. 
######
I was talking to a DParent I’d literally just met minutes earlier while attending a friend of a friend’s get-together a few weeks back. We’d been chatting for all of about 16 minutes when DParent said something like: Well.. You don’t have any D complications... do you?? I mean you took care of yourself....You did what you were supposed to...Right? 

And in that moment my heart hurt so much I thought it would break.
It wasn't the first time a person (or a D parent for that matter,) had said those very same words. - But regardless of who says it, it hurts to hear if you've been in the diabetes game for decades - And the D judgement from your own, even when it's unintentional pierces your heart and puts you on the defensive. 

I was simmering and I didn't want it to boil over to the surface, nor did I want to flip my Diabetes Bitch Switch
I didn't want to fight, especially with one of 'my own." 
I’d just met DParent. I couldn’t even remember her last name - And I probably would have answered her question if I hadn't felt it was dripping with diabetes judgement - And I knew that she didn't hear the judgement in her own words.

I wasn't just mad at the question. I was mad at my 14 year old self for sins committed long ago, when I blamed my sister Debbie for her diabetes complications and her alcohol issues. 
I was mad at my 20 something self and her skewed view of people with type2 diabetes that was less then kind and understanding.
And I was mad at myself for what I could and or should have done in my diabetes past. 

Knowing what I know now about diabetes in all dimensions, diabetes and depression and diabetes burnout verses what I knew then brings all sorts of emotions and D guilt to the table.
I took a deep breath, looked D Parent in the eye and calmly asked: Why do you think that people with D complications didn’t try their best with the tools they had at the time?
Seriously, would you think less of me as person if I told you I did have D complications than if I didn’t?
D Parent: Well.... It’s just that people with diabetes comp

And I stopped her right there. 

Me: It’s not so easy to scrutinize someone with diabetes complications when you take a look at the history of treating diabetes. 
When I was growing up,(and pre - me for that matter,) in the Diabetes Dark Ages, we didn’t have technology like meters and cgms to manage our blood sugars, we tested urine. 
Insulin pumps were neither precise nor compact and they weren’t covered by insurance or available to the masses. Sliding insulin scales, like glucose meters are relatively new (don’t even get me started on accuracy issues) and there were only 3 insulins on the market when I was initially diagnosed. 
I reminded D Parent that the diabetes diet back in the day was incredibly restrictive and how all of the above made living with diabetes hard - And that it was still hard - even with all the flexibility that today’s D diets have.
And that sometimes that even D technology in all it’s glory makes diabetes even harder to deal with mentally. 
And then I continued rambling and said that in the Diabetes Dark Ages, nobody treated the mental side of diabetes - And no one considered the mental toll diabetes took on a person with diabetes or their loved ones. 
Diabetes Burnout, like diabetes itself and all its forms, was (and by those that are uneducated, still is) considered a lazy man’s disease and a copout. And that genetics and sheer dumb luck also comes into play with diabetes and complications. 

Me: Honestly DP, don’t we get enough judgement from people who don’t live with diabetes? We shouldn’t judge one another when it comes to diabetes, regardless of the type or the diabetes complications. It isn’t PWDs (people with diabetes) sans complications verses PWDs with complications. 
We have to help one another, not judge one another for what we did or didn’t do in the past. We have to focus on what we are doing now to help our future.
And then I took a breath and D Parent looked at me with glassy eyes and apologized. 

DParent told me that she’d never considered all of the above. She was less than 3 years into her son’s life with diabetes and that most of what she’d been told about D complications blamed the PWD or the parents of the PWD and that she was still learning - And that it was hard and that she was scared. 
And her words allowed me to look at her with new eyes - And myself. 
I gave DParent a hug and told her that even with 36 years in, I was still learning too. 
And that my D passion might easily be mistaken for judgement - And I really hoped that wasn't the case, but if she felt at all judged,I was sorry and that she was doing a great job and to hang in there. 

 And then we smiled at one one another and then the talk turned to the snack spread and guessing the bolus for the spicy hot-wing dip, which eventually led to talk of the DOC and before we knew it an hour had gone by. 
In the end we both left the party with new perspectives and new lessons tucked in our hearts and our heads -  And with a new friend's digits in our smartphones~   

Friday, August 2, 2013

Of Temporary Basal Rates, Burgers, Bread Baskets & Friends Who Worry~

I met up with a large group of friends at a new bar/restaurant a few weeks back, and the minute I walked in the joint and saw the 8 inch high burgers( insert sex/meat joke here. Also, THAT'S WHAT SHE SAID, ) and Belgium fries pass by on the server's tray,  I started a temporary basal rate of 30% - Because I was going to need it! 
More and more people were arriving and our party was getting better. We went from a table of eight, to 3 tables for 16+ people and we hadn't even placed our food orders yet. 
So a few of us that wanted to get on with the business of ordering decided to go ahead and order & get a separate check for the 5 of us. 
And I casually mentioned that I was on an increased temporary basal rate in anticipation of the burgers and didn't feel like waiting an hour before I placed ordered because: 
1. I was hungry
2. I was hungry and I didn't feel like waiting
3. I had taken extra insulin via my amped up temp basal rate.   

And that would be when my 2 friends immediately started to worry in stereo.

Friend A: Do you need food, because I could go grab some bread.
Me: No, I'm fine. My blood sugar was 170 when I tested a few minutes ago, I'm great!
Friend B: Are you sure? I could get you some orange juice. 
Me: Thanks, but honestly, not a big deal. Also, I have glucose tabs (Cherry Glucolift to be exact,) just in case.
Friend B: Here- I have a cough drop - it has sugar in it. 
Me: My cold is almost gone, but thanks.
Friend B: Not for your cold, for your blood sugar. 
Me: Oh... Ok. Honestly though, I'm not hungry, but thanks.
And then I took the cough drop from her hand and ate it, even though I really didn't want to, because I thought it would make my friend feel better. 
Small chit chat followed and Friend A excused herself and 5 minutes later she came back with a basket filled with hot bread and butter. 
Friend A: Hey - I got bread from the waitress.
Me - feeling guilty: I'm fine & you really didn't have to do that. I'm getting a burger and fries, I shouldn't eat bread, but thanks.
Sidebar: Turning down bread is so damn hard!
Friend A: I got it for me, not you
Me: OK, cool. But thanks anyway. Also, I know you got it for '"us," emphasis on "me." 
Friend A: I can't help it, I worry about you. 
Friend B: It's just how we are - we love you - we don't want you to go low or get sick .

The 3 of us had been friends since college, they'd known my sister Debbie and they were good to her. And there were days when they could deal with her being sick better than I could. These women (they were sisters,)  loved my parents and my family and I consider them family. 
And their concern made me grateful, happy and slightly sad all rolled into one. 
I was incredibly grateful for my wonderful friends. 
I was happy because having said wonderful friends who get and accept you - regardless of your busted pancreas are more precious than gold. 

And I was a slightly sad because I was the one who was making my friends worry - And I that made me feel slightly guilty

15 minutes later and 10 minutes before my burger arrived, I bolused for my food, including two slices of dinner roll. Not because I wanted to and not because I had to, but because the diabetes guilt was creeping in and I could tell that my friends were still a bit anxious.
And lets be honest, turning down bread is not an easy thing to do - AND IT COULD BE SO MUCH WORSE. AND IT WAS DELICIOUS!  
Diabetes guilt or not, good friends are gifts - And I am one lucky duck, indeed. 

Saturday, January 21, 2012

Debbie - 21 Years Goes By Like THAT.

Debbie, Santa & Kelly

Debbie-
21 years goes by like THAT..... And there's still some much I remember.
Today, I choose to remember how you were on this day, how we both we're.
We were happy and we were laughing and we didn't have a care in the world.

I think about you everyday,Deb - And I miss you very much - And I wish I'd been more patient at times.
Today, diabetes is so much different and you wouldn't feel alone.
You'd feel more empowered and you'd be part of amazing diabetes on-line community that would just continue to amaze you everyday - TRUST ME.

I find comfort that Mom and you are together again, because she missed you so much!
Still, I'm jealous that she's with you because I really miss her!
But I remind myself how long you both waited to see one another again and I can only imagine the party that you and Dad had when she got to heaven.
Take care of her, and Daddy too.
Love,
Kelly~

Tuesday, August 2, 2011

Diabetes Dinner Talk Between The Salad & Main Course.

Mom & I, the summer before I was diagnosed ~



Time: July 2011

Place: A restaurant along the back bay in a little Hamlet by the sea.


So I was having dinner with my mother the other night, and as we sat waiting for our dinner entrees to arrive we talked about work, the family, and how freaking hot it’s been this summer.


I was devouring my salad and was amazed with each bite how the combo of radicchio, shaved Parmesan, cherry tomatoes and sliced jalapenos were pulled together in a blanket of awesomeness when lime vinaigrette was added to the mix. Seriously, BEST. SALAD. EVER.


Then, like out of the blue my mom said:


Mom: Kelly, I’m really impressed with the way you take care of your diabetes.


Me: Ahhhh, thanks mom, but I’m still trying to figure it all & I need to do better in some areas. I have to get my A1C lower & exercise more.


Mom: I think you do a great job, I mean you're always testing and you watch what you eat and you have a good attitude.

I really wish your sister had been more like you with her diabetes.


Me: Thanks mom. But don’t blame Debbie, times were so different then - She didn’t have the diabetes tools that we have today. It was SO DIFFERENT.


Mom: I’m not blaming her, I just miss her so much! I can't believe I haven't seen her in 20 years - You know I think about her every single day. I miss her terribly.


Me: Yeah, I know you do. Me too.


Mom: I just think your doing a great job - keep it up.


Me: Thanks for saying that mom & I'll keep trying!


And then we smiled at one another & continued to pick (OK, I was engulfing, not picking) at our salads.

But I could feel my face start to get red and I starting blinking, so I excused myself and said I had to make a Ladies Room run.

I knew if I didn’t get up from the table right then I’d start to cry and I didn’t want to do that.

In the Ladies Room I looked in the mirror and saw my damn near beet red face staring back at me.

I was so happy with my mother's words, but a part me still felt like the 12 year old girl who's Peds Endo told her that that the numbers didn't lie and that she needed to do better. The same child who watched her sister get sicker and sicker from a disease we both shared. I didn't want the sadness of those memories to cloud my mothers words or how they made me feel.

So I blew my nose, splashed my face with water, put on some powder & lipstick and returned to the table.


Mom: Took you long enough - What'd you fall in?

Me: Yep, head first and ass over teacups.

Mom: That sounds like you!

Me: Yeah, I know... I'm my mother's daughter!


And then we laughed.

And then our entrees arrived and a wonderful meal was had by all.

Thursday, February 3, 2011

Here's What I know


Here's what I know.

I know what it's like to be a child with diabetes, who grew up and didn't know where to turn when she became an adult with diabetes.

And I know that some damage was done.

I know what it's like to have your father breakdown and sob on your shoulder at your sister's funeral, because his daughter died from Type 1 diabetes.

I know what it’s like to look at her face lying in the casket and see your own.

I know what it's like to learn from parents of children with type 1 diabetes - They share with me what my parents would not.

I know what it's like to be an 8 year old who was told the cure was 10 years away, and I remember exactly what I was thinking as I blew out my 18th birthday candles.

I know what it feels like to be in college and suffer from diabetes burnout and isolation.

I know what it's like to be well past college and suffer from diabetes burnout and isolation.

I know what it was like to live in the Diabetes Dark Ages, before the knowledge and power that technology brought us.

And I know some of the causalities of the Diabetes Dark Ages by name.

I know that I will crawl through glass on my knees for a cure and I will continue to help and support any organization that is working towards that cure with every fiber of my being.

But as person who knows that the world is a very lonely place when you turn the corner and become an adult with type 1.

I know that I will also support organizations that will make the world for adults with type 1 less isolated and more welcoming.

And I know that I love and respect my diabetes family very much and I want them to love and respect one another.

To quote a very wise man Named Jeff Hitchcock: Let's all remember that we are not the enemy. The enemy is diabetes.

Friday, January 21, 2011

Dear Debbie: If You Were Here......

Starry starry night, paint your palette blue and grey
Look out on a summer's day with eyes that know the darkness in my soul
Shadows on the hills, sketch the trees and the daffodils
Catch the breeze and the winter chills, in colors on the snowy linen land

Now I understand what you tried to say to me
How you suffered for you sanity
How you tried to set them free
They would not listen they did not know how, perhaps they'll listen now.
Don Mclean - Vincent (Starry Starry Night) Lyrics
#####

Dear Debbie -
It was 20 years ago today that you left us.
IF you were here, I'd tell you that I love you; I'm sorry, and that I've thought about you every single day these past 20 years.
IF you were here - I'd hug you more and blame you less.
I'd let things roll of my back and would suggest you do the same.
I would encourage you to seek help for all your problems - both physically & mentally.
I would tell you that so much has changed for the better in the world of diabetes.
If you were here, I'd have more patience and understanding because now I understand you better.
If you were here, I know that you would love and be an active member of the Diabetes on-line community.
Because I seriously believe if the Diabetes On-line community had been around while you were coming into your own,
I know that you'd still be here.
Because you'd no longer feel alone, or different, or crazy,
and you'd possess the technology, the tools, the skills, and the desire to manage your diabetes better.
And you'd have the confidence & the willingness to own your diabetes and face your other issues that held you down and held you back.
Seriously Deb, you'd be amazed at the diabetes technology of today and would welcome it with open arms.
Insulin pumps & cgms would totally blow your mind-
And the fact that you'd be able to test your blood in 5 seconds would make you smile.
Debbie, If you were here, I'd try and make you laugh more and cry less and I'd force you to grab all the golden rings that life has to offer - regardless of gentics or diabetes!
If you were here......
I'd hold you tight - because I know much more than I did then.

Wednesday, September 22, 2010

"Chi, Chi, Chi, CHIABETIC"

Fantastical friends

So I was having drinks with one of my best and fantastical friends, Mark H on a night not so very long ago.

Back-story: Mark and I met on the first day of 6th grade (our desks faced one another) and we’ve been friends ever since. We went to middle school, high school (yes, he was my Jr. Prom date) and college.

Mark knows everything about me - the good, the bad, & the diabetesalicousness of it all. He’s been with me through all the triumphs and the tears, and he loves me no matter what.

And I will love him for as long as I live.

I couldn’t ask for a better friend. And before you ask why don’t we get married, Mark has a fantastic partner named Ron who I love and adore!

And honestly, I've never looked at him in that way - THANK GOD!

No, I love Mark, but I'm not "in love" with Mark.

Anyway, over drinks (Mark was drinking a dirty martini & I was nursing a Bloody Mary) we were talking about my blog, life with diabetes, and growing up with diabetes.

Mark is one of my memory keepers. He remembers me as the 6th grader with diabetes, the teenager with diabetes who had her share of issues, and the college student with diabetes who fought hard to be perceived as normal.

Mark had patience with my sister Debbie, especially when mine ran out. He’d make her laugh, include her in moments that I was being selfish about, and in the end, he loaded up her wheelchair to the local mall and the two of them got in all sorts of trouble.

When Debbie died, Mark spent the whole day & night of her funeral with me. He and the rest of my friends took me to a bar and we all cried, laughed, & requested & sang songs in her honor.

Free drinks for our group were lining up at the bar and it was long night for all of us.

Afterwards, Mark took me home and watched me as I slept. The next morning I woke up with a stale 1/2 of PB&J next to me, because Mark was afraid my blood sugar would go low in the middle of the night.

A few weeks later, Mark booked and paid for a spring break trip for us to Cancun.

“You can pay me later – you need a vacation.” And he was right, I did – we both did.

Nowadays, Mark is a mover and shaker in NYC, & he’s still one of my best friends.

The other night as we sat at the bar, eating apps, having drinks and talking about life, I was once again reminded of what a wonderful friend I had in him.

But before I could get all sappy, Mark said the following:

Mark: One of the things I love about your blog is that you have the perspective of growing up as a chiabetic, which I think…

Me: Chiabetic??!! Child + diabetic = chiabetic - I LOVE THAT MARK!!!

And then I started singing the theme to the chia-pet commercial except I sang: Chi, chi, chi, chiabetic!"

Mark: What? I meant to say child diabetic.

Me: CHIABETIC IS GREAT AND I’M TOTALLY STEALING IT!

Mark: Go for kitten- it’s yours!

And so I did~

Thanks Marky!

Thursday, May 20, 2010

My Hometown In A Nutshell

Date: Mother's Day 2010
Location: My hometown's Starbucks
Time: Late morning after a two mile walk

I had just payed for my Starbucks addiction, (unsweetened green iced tea, Grande) and was about to walk out the door, when a stranger who was walking in said door stopped dead in his tracks and said:

Stranger: Hey, your a Kunik, right?
Me: Yes, guilty as charged.
Stranger I knew it! You have that 'Kunik" look to you.
Me: Yeah, I get that alot.
Stranger: My name's Jim XXXXX, I went to school with your sister Debbie- she was a trip!
Me: Hey Jim, nice to meet you, and yes, she certainly was.
Stranger: So, I guess you have diabetes too?
Me: Yeah, I guess I do.
Stranger: I miss your sister.
Me: Me too.
Stranger: You look great - how's your health?
Me: My health is great. How's your health Jim?
Stranger: It's good, it's good. God, I'm sorry if I sounded like an ass Kel, I just really miss your sister.
Me: Yeah, I know, me too.
Stranger: I'm so glad your health is OK, and I'm so glad I met you!
Me: Yeah, me too.

And that's my hometown in a nutshell.

Wednesday, January 21, 2009

"This ONe's for You, Wherever You Are."

My sister Debbie and I, circa 1979 - I'm eating my snack and she's lighting a cigarette
We were laughing as my Uncle took this pic -and that's what how I'm trying to remember her today...laughing.

Well, it's been 18 years since you left us Deb, and there's not a day that goes by that I don't think about you and all you went through. The world of diabetes has changed so much and I wish that you could have benefited from all the research.

last year I wrote a post on your life and how you suffered with diabetes. Today, I'm just trying to remember you laughing, because when you laughed, I loved you the most.

To quote Barry Manilow - one of your favorites, "This one's for you, where ever you are."

Hope heaven is all it's cracked up to be and that every day there is better than the one before. Give Daddy a hug and a kiss for me and know that I miss and love you both very much.
Peace~

Friday, June 27, 2008

F NORMAL

FUCK NORMAL.

Over the past few weeks, thanks to reconnects on Facebook and meeting a few dbloggers face to face, I’ve been asked about my late sister Debbie -in detail. People wanted to know why diabetes did such a number on her. Why it took her life.

I think there are many reasons, not all having to do with The Big D. Debbie’s health was fragile to begin with, diabetes or not.

When she was diagnosed, (in the late 60’s) the diabetes diet was strict and archaic in terms of diabetes today. There was no such thing as Blood Sugar testing at home; urine testing tablets and tape were the only choices.
HA1C’s didn’t exist; neither did support systems, in real time or on the web.

Insulin pumps were a pipe dream and insulin was obtained through cows and piggies.
Needles had to be boiled and sharpened, and were never pleasant.


Diabetes treatment in the last 10 to 20 years is historic to say the least.


The freedom we have to day is so crazy compared to how it used to be.

I mean my sister couldn’t eat anything with sugar, and boy did she overcompensate when she did. She snuck food at all hours. Food and alcohol became her addictions and that addictive behavior followed her into adulthood.

Her alcoholism is another posting in itself. Let’s just say alcoholism can do a number on one’s kidneys, and when she finally quit, it was to late.

But what really worked against her (at least in my eyes,) is the fact that Debbie wanted so desperately to fit everyone else’s ideal of normal.

If I could change one thing for my sister Debbie, (besides never having been diagnosed with Diabetes) it would be to change what her ideal of normal was, especially when she was a teenager and in college, when most of her damage was done.

I guess what I’m trying to say to those in dblogville is screw everyone’s version of normal, diabetic or not. What’s normal for a diabetic is not considered normal for the rest of the population. It is what it is…. And what it is, is DIFFERENT.

Different is ok.
Different works for me.

My blood sugar and A1C goals are different than yours, and I’m fine with that.
I’m fine with testing, no matter where I am, or who’s with me.
Debbie wasn’t.
She tried to be so damn “normal." Normal was eating and drinking everything she wanted, going into DKA, and doing drugs, so that she could fit in with experimental teenage years that occurred in the early 70’s. She over compensated when it came to “being normal” and the damage was major.

WHY BE NORMAL? Some people will sit in freezing stadium (shirtless and with faces painted) on a Sunday afternoon to be part of THE PACK. I THINK THAT’S INSANE. To them, it’s TOTALLY normal.

Some people stay with someone because they are afraid to be alone. That’s not only not normal, it’s really quite sad.

Some people go the Vegan route, no animal products ingested at all. I think that’s difficult and limiting to say the least. They think it’s normal.

Some folks love the Hannah Montana. I just don’t get it.
To them – NORMAL.

Everyone has a different ideal of normal. Instead of relying on some else’s ideal of the word, how about embracing what the world represents to each of us individually.

While there is a format to diabetes, it needs to be fined tuned for the individual.

Diabetes is a different creature every day.

We’ve all said that, and we all need to practice that.
Now, we all need to give ourselves a break and say," I'm really doing the best I can and some days are better than others. Shit happens, with our life and our diabetes."

We need to be proud of ourselves for all our hard work regarding diabetes, even when our numbers aren't where we'd like them to be.

We never get a vacation from D, and we deal with it everyday. Some days, are just better than others.

I wish Debbie had focused on what was normal for her, instead of trying to live everyone else’s view of the word. I wish she could have met all my nephews and nieces, watched with pride as our niece perform on Broadway, be blown away at our nephews “great brain” as he works towards completing his Doctorate at Berkley, and I wish she could have met out oldest nephews son.

I wish she had the confidence to be and love herself, and I wish she didn’t have to suffer.


I wonder what my life would have been like, had her view of what was normal had been different.


I don’t know why I’m really writing all this. Maybe it’s because a few friends from grade school recently told me they had no ideal that Debbie had been so sick, because I had kept it to myself.


Maybe it’s because I’m SO HORMONAL and I’m craving salt and chocolate & can actually see my 5 lb water weight gain happening right before my eyes.

Maybe it’s because I want people in dBlogville to know that while their D reality is different than the “norm,” it’s so much better than what it had been in the past.

Maybe I need to remind myself of how far we've come, and how far we still have to go.

Maybe I just needed to remind myself of Debbie.

Wednesday, March 26, 2008

Dear Mom and Dad, THANK YOU (Inspired By All the Parents In D-Blog Land)

Dear Mom and Dad -

I don't think I ever said it before, but THANK- YOU so much for taking care of me; Debbie, and Donna.

God give you 6 kids and 3 girls with Type 1 Diabetes

I don't know how you did it.

How did you take care of us all those years ago, before the technology and research?
Before the open forum of communication on the net and the freedom of carb counting and insulin pumps?

Back in the days when urine testing required fizzy pills and glass tubes, a clumsy and and inaccurate way that was used to measure our sugars way back when...Until Blood Sugar machines the size & weight of a brick came about.
These antiquated "machines" took 5 minutes to calibrate and another 5 minutes to measure your sugar. They were far from portable, required metal lancets that hurt like a bitch, and God only knows how accurate they really were. They were also VERY expensive. You bought one with money that we didn't have so that we could gain control. Instead of thanking you, I bitched about it.
I wanted to be NORMAL & fought you tooth and nail. I'm sorry.

I don't ever remember you crying when I was diagnosed. I know you did, but you kept your tears behind closed doors and in the dark. You always entered my hospital room with a smiling face and a bunch of new "Romona" books for me to read.

I just did the Diabetes math. I was 8 at my diagnoses, Donna & Debbie we're both 12.
Donna is 20 years older than me and Debbie was 14 years older.

So, if I've got the math down correctly, 1st came Donna at the age of 12. When she was 18, Debbie was diagnosed at the age of 12.

Which means you had 6 years before 1 Diabetic daughter became 2.

You had 10 years before 2 Diabetic daughters became 3.

Donna had married and moved out four years earlier by the time of my diagnoses.
Your daily diabetes family life was just getting easier when I joined the Club of D. It must have been so hard for you to handle...And even harder for you to hear.

Mom and Dad, I'm so sorry that my diagnoses hurt you, and for what all our combined diabetes has put you both through.

You never let us feel sorry for ourselves. I never grew up with a hatred of diabetes. Though deep in my heart, I hated what it did to you. I think it really helped when dad sat me down long ago in my hospital room and said; "Kelly it is what it is, do what you have to." And I did.
Daddy knew from experience, because he was a T1 as well.

Mom, you posted the ADA diet on our kitchen wall, right behind my seat at the kitchen table.
You measures portions fanatically, right down to the grape. You'd dole out 12 grapes for my snack. I'd give them back and say in a venomous "Keep Em! Who can eat 12 grapes?!" But u were just doing your job and never wavered. I never experienced chicken with the skin on it until I was 21, and to this day, have never had a class of OJ that was more than 1/4 of a cup.
I don't even drink juice anymore.

.
Dad, you body surfed and swam in the ocean every summer, and you shared your love of all water sports with me. Together we became part of the waves, while maintaining good numbers.
You rode your bike every morning, and when you passed by my bus stop Freshman year, I was embarrassed instead of proud. I'd give anything to see you peddle your bike one more time. I'm sorry.
You and mom took long walks every evening with the dog and u ou always said exercise was the key.

You were meticulous, bordering on the insane, about what you put in your body.

A militant soldier when it came to food. Only skim milk, fruit, and eating only whole grain bread before it became the rage. While I longed for "Wonder Bread," you put the kibosh white bread of any kind. I thought you were mean, but you were smart because you still let us enjoy ice cream.

Diabetes took so much from you both, most namely your daughter Debbie.
Daddy, you never recovered from her loss. Every time you spoke of her death, I heard sadness and anger all mixed together. It broke a part of you that all my jokes couldn't fix.

Mom, you cared for her (for all of us,) with such gusto that you're heart literally started to skip beats.
The scariest moment of my life was when you and Debbie were both in separate hospitals.
I came home from school to an answering machine full of voice mail that told me nothing and everything.
I knew one of you had gone to heaven. I was so scared it was you. I felt so guilty (yet relieved, because I still had a mom) when I heard it was her.

What got me thinking about what you both did for me?

All the parents of Diabetics kids whose blogs I read. I hear what they go through everyday and I immediately think of you both. They tell me what you wouldn't.

Parents of diabetics are a different breed entirely.

They are strong, keeping a smile on their face when they take care of their kids, even when they feel like crying out in pain.
These parents have the strength to say "no" to their kids, even when every fiber of their soul wants to say yes to them.
Strong enough to take their kids blood in the middle of the night, insert infusion sets that make their babies cry, give-up gluten with a smile that never seems forced, and count carbs until it becomes second nature to everyone in the family.

These moms and dads have the fortitude to let their diabetic children grow to become independent young adults. Even when they know that independence means that their kids will make conscience mistakes in order to fit in.

Diabetic parents hate the disease, but are strong enough to not let their kids hate it, because if they did, their children would never learn to accept and love themselves.

To every parent in D-blog land, THANK-YOU. I know when your kids are old enough, they will tell you themselves, and they will have meant from the bottom of their hearts.

To my parents, THANK YOU. I wouldn't be here today if you hadn't worked so hard to keep me healthy.

You taught me to pick myself up by my bootstraps and move forward. I hope I'm making you proud.

Love You Both!
Kelly
#6

Tuesday, February 12, 2008

What if the Queen Had Balls?


Tonight I fast...Fast for the battery of blood work that accompanies my Tri-monthly Hemoglobin A-1C.

Last night I fasted and was supposed to have blood taken this morning, but deadlines called, and tomorrow will have to do.
I don't know about you, but the anticipation of the fast; the test, the results, and what they mean, tends to do a bit of a head-trip on yours truly.

Will my numbers be good, or at least improved from last time?
Will medications have to be upped, lowered or added?

Am I on the continuing path towards health, or will my sister's words which paralyzed me years ago (see January posting) comeback once again to haunt me?

Tests freak me out, always have. Just go ask my High School Math teacher. Poor Mr. Mandell would watch as I'd start to tear-up during the test. I'd study so hard, my parents would pay good money they didn't have for a tutor, and I'd pass, at least the night before the test in the comfort of my living room, with my math tutor Joe, a former Big Band singer and WWII pilot with a great head for numbers. But during the actual test in school, I'd psych myself out, freeze up and forget everything.

Mr. Mandell would actually work in extra credit points that only I would know. For instance, on 1 exam the extra credit would be a point for every Woody Allen movie we could name. I got at least 10 extra points on that one. Another exam had us name previous Oscar winners and the films they won them for - that was at least 15 points thrown my way.

As an adult, I suffer from "White Coat" syndrome. They normally have to take my blood pressure several times because the 1st one is always high due to the fact that I know how important my numbers are.

It's really ironic, I can talk to large groups of people about living with diabetes and only suffer from butterflies and the wonderful adrenaline rush, but have Nurse Practitioner Chick take my blood pressure, and I have to talk myself down from a ledge of "What-ifs."

"What if my blood pressures high?"
"What if my urine tests have protein?"
"What if my blood work shows something that just should not be?"

Then I ask myself, "What if the Queen had balls Kelly, what then? Hmmm, good question.Well, then She'd be King or a really fabulous Drag Queen that’s what if….Get over the fear and get on with your life Kel!"

As Diabetics we live in fear of the dreaded "What Ifs,"on a daily basis.

I'm tired of the power that the "What Ifs " hold on me and I’m purging them from my life right now!
I'm going to focus on the fact that these tests are there to help and inform me, not hurt me.

I' m going to learn from them and live my life to the fullest.

Technology is our friend and knowledge is power.