And The Heavens Have A Bright New Shining Star........

Marjory - Ice Capade Starlet

On Friday night, September 23rd, surrounded by her family, my mom went to heaven.

The world is a much less beautiful place without her presence but the heavens have a bright new shining star.

I was lucky enough to have been given the gift of Marjory as my mother, and I am incredibly lucky to have had so many years with her.

She taught me laugh and smile and to look at the glass "half full" instead of half empty.

She taught me that sparkles and red lipstick were a must, and should always be accompanied by a smile.

Marjory believed in eating dessert first whenever possible and that being stuffy wasn't a good look for anyone.

My mother was classy and street smart all rolled into one, with a great attitude and a good sense of humor thrown in for good balance.

My mother found religion in her garden and talked with God daily, and one on one.

She drank her tea from china cups, poured from a china teapot and liked her beer ice cold and in a bottle.

Mom lived to have fun - She'd had a lot of tragedy in her life and she knew heartache.

She'd lost both her parents, her brother and little sister, and her daughter Debbie, who died from type 1 diabetes. Most people would have understood if she became bitter and mad all the time, but my mother was strong minded and strong willed, and she refused to let the sadness overwhelm her.

Instead, she learned from heartache to appreciate all that life had to offer.

My mother was saucy, fun, sweet, funny, tough as nails, and ferocious when it came to protecting her loved ones.

She was proud of her children and in awe of her grandchildren.

She was a loyal friend and her "happy go lucky" attitude was infectious.

My mother always left her attitude at the door and taught me that the most beautiful woman in the room could also be the most kind and loving.

Mom, I love you more than words can and express and I miss you so much that my heart literally aches from the loss.

But I know that you are at peace and out pain and with Daddy and Debbie and your parents, Uncle Roy and Fern, Mark & Tommy and the rest who passed before you.

I know that your up among the stars, sipping Pino Griglio and wearing a kick-ass pair of platform wedge shoes or maybe those custom Stanzione Ice Skates and having a blast up in heaven.

I told you on Friday that it was all right to go home and I made you a promise that I'd be OK because I am my mother's daughter.

And I won't go back on my promise to you - No matter how much I hurt or what obstacles come my way.

I love you with all of my heart and It was truly the greatest gift of my life to have had you as my mother.

Thank you for that gift and all your love!!

Mom & I at a Pink Hat Tea

CHEERS MOM

Mom's obituary:

http://www.legacy.com/obituaries/pressofatlanticcity/obituary.aspx?n=marjory-june-kunik-mcchesney&pid=153838427

In lieu of flowers, donations can be made in Marjory's name to the following Diabetes charities:

https://www.diabetesresearch.org/sslpage.aspx?pid=891

http://www.jdrf.org/index.cfm?page_id=105656

"We Are In A Holding Pattern Of Sorts"

I haven't blogged this week for good reason.

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Mom took a turn for the worse on Saturday and today we (my siblings & extended family) wait in a holding pattern of sorts.

In a nutshell: Due to CO2 build-up, mom coded twice and was brought back with CPR. Unfortunately, she's back in ICU, on a vent, on oxygen and according to the Doctors, isn't in any pain.

So we wait for heart and neurological tests to be repeated and we hope.....

Through it all, mom continues to look beautiful.

As for me, this has been the most difficult time in my life and makes diabetes look like a walk in the park.

I love her so much and seeing her suffer breaks my heart more each day. And I feel like such a hypocrite for talking about my broken heart, because when I see all she's going through -

I have no right to complain.

National Invisible Illness Week: The Only Thing I Can't Do Because Of Diabetes Is Make Insulin...

SSeptember 12th through September 18th, 2011 is National Invisible Illness Week.

It's my second year in participating/ writing about my invisible illness and I'm glad to be a part of it.

I really encourage you to not only write about your invisible illness, but read about others living with an invisible illness, diabetes and otherwise.

Not only will you learn about the challenges others face - You also see the similarities that we all share (diabetes or not) as patients living with a chronic illness.

We are all in the same boat, and we have much to learn & teach each other.

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My diabetes is invisible at first glance, but it’s with me 24X7, 365 days a year, and whether I like it or not - My diabetes and I are a team.

Like my own personality, there are moments when my diabetes is quiet and almost shy, and there are other times when it’s boisterous and downright loud.

Still there are those moments that diabetes can make laugh out loud or sob from frustration and fear.

Sometimes my diabetes appears in different forms, like when food on my plate suddenly appears as carb counts instead of.... well, actual food.

Diabetes forces me to think like McGyver in order to wear a dress, and become Einstein when it comes my Diabetes Theory of Relativity regarding pasta.

Diabetes has forced me to speak up, even during those moments where I’d like to keep to myself.

I live my life with diabetes because I don’t have a choice not too.

So if you have questions.... by all means, feel free to ask me.

But please consider what your going actually going to say and how those words might actually sound as they roll of your tongue.

Don’t tell me that my diabetes is the “bad kind,” or that my mother ate to much sugar when she was pregnant with me.

Don’t tell me what I can or cannot eat - Trust me, I know what meals work and what meals require work.

And don't tell me that "I don't look like I have diabetes."

NEWSFLASH: THIS IS WHAT DIABETES LOOKS LIKE.

And don’t think I can’t accomplish something because I have diabetes.

The only thing I CAN’T do is make insulin - Everything else is GAME ON.

Who Fights For Patients In The Hospital IF They Don't Have An Advocate ?

Seriously, do you think I like being a bitch? Do you think like I like hovering and calling you out when you drop the ball regarding patient care in a clinical setting??

Do you think I like writing ABSOLUTELY EVERYTHING regarding my mother’s care and course of treatment in my ever present blue notebook?

Do you think it pleases me to call out Hospital Customer Services who seem to run in circles but never seem to actually get anything accomplished.

Sidebar: I know how hard Customer Service is - I worked CS for 2 years for a major computer company when I first moved to Philadelphia, plus I waitressed in both High School & college, so for me to complain about Customer Service- There has to be some major issues.

Here’s the thing, my mother is your patient at YOUR hospital - She is YOUR client and I am her representative.

She’s been there for 3.5 weeks and has been in 4 different departments. I don’t want to hear: Oh, but that didn’t happen in my department. Or, "She's not my patient so no, I can't help your mother in anyway, shape or form.

Since I seem to be the only one tracking my mother through ALL FOUR DEPARTMENTS at YOUR health care facility,

I demand both information and respect. And YES, of course it would be fantastic if the hospital actually had a Patient Advocacy Department who's primary goal would be to provide a point person for the patient, who had the patient’s back and and acted as the primary Communion Officer for said patient between the various departments ( i.e. emergency room ICU, PCU, Telemetry, etc) that the patient goes through. But since that’s not an option, you're stuck with me.

So when I ask questions regarding her day to day care, don’t look at me like I have 3 heads. I’m advocating for her, and I’d like a report from her Hospitalist and Specialists on a daily basis.

Why is it so difficult to have a chain of communication in your healthcare facility that doesn't have any "kinks" in it?

Why are patients & their family members talked AT and AT YOUR CONVENIENCE, instead of TO and WITH on a daily basis?

I have a right to know what’s going on and so does she. I want to know what the specialists say and I want a report - Lord knows we’re paying for it. You get your bills out to us ASAP, ( no kinks in that department I see,) how come you don’t answer our questions and our set aside a time to meet with the patients family ASAP?

And to the nurse with the bleached blond hair who never even worked on my mother and who got all snarky with me yesterday and called me “HONEY” in a none too pleasing tone. A. I'm not your HONEY, and B. Don’t look all surprised when I call you HONEY in the same “none too pleasing tone” and rattle off facts that you’ve obviously gotten wrong about what’s actually going on with my mother, HONEY!

And to those fabulous nurses & techs (and there are so many I can’t even name them all) who have been nothing but kind, caring, professional and loving towards my mother- I thank you and my family and I appreciate all that you’ve done and continue to do for my mother.

I will write you all a proper Thank-You very soon, but until then I hope that you've enjoyed the Starbucks gift certificates and coffee my family has given you as token of how much we appreciate all that you do. It was just our way of saying "THANKS FOR GOING THE EXTRA MILE WITH OUR MOM!"

And a big thanks to the Respiratory Therapists, Physical Therapists, Kitchen Service workers & Some of The Doctors who have been kind, communicative and caring.

But to the Hospital Administrators who I WILL be meeting with in the very near future,

I’d like it to let it be known publicly, that every night when I leave your hospital after visiting my mother, (FYI: ironically, it’s really modern and well respected hospital) I’m left wondering what the hell the patients in there do if they don’t have anyone advocating for them - And I know that my siblings feel the same.

Who fights for patients? Who and or where is the constant line of communication between the various hospital departments for them.... And who’s keeping track about what is and what isn't happening? And seriously.... who has their backs???

Of Surgical Waiting Rooms & Setting People Straight On Their Diabetes ~

True story. About a week and a half ago I'd snuck into the Surgical Waiting Room to get better cell reception and get some work done. I knew where it was because I'd sat in there several time during my mothers surgical procedures.

The seats were comfortable and they had free coffee and gourmet teas. And honestly, I just needed to get some work done and be by myself for an hour.

As I typed, I heard some men talking about various health problems they were experiencing.

I was doing work on my computer & minding my own business and really wanted to just keep to myself. But then the man on my left said something that really pissed me off.

And let me just preface the story with the 4-1-1 on the Surgical Waiting Room. Everyone in there sort of talks with one another, whether you actually know one another or not.

You're a group of people who are going through a similar issue with a loved one and people tend to talk about everything. And folks jump into the conversation whether they're actively participating in it or not.

Man on My Left: Yeah, I was just diagnosed with Type 2 Diabetes and I'm not even 50 yet - You know your on a downward path when that happens.

Man Sitting Across: Oh, I hear you and totally agree. I was diagnosed with Type 2 as well and I'm 46 - And I feel like I'm a 100 years old.

I had two choices at this point. One, I could ignore them and keep working on a piece I was writing...... Or two, I could tell them how I REALLY felt.

And of course, choice number two won in like one second flat - And before I knew it, I opened my mouth and started speaking.

Me: Actually, I think it's a cop out to say that diabetes is a downward spiral - Regardless of the type. I think diabetes is lots of things. it's a pain in the ass at times, and it can bring you down, but I really think that it can give you an opportunity to get a hold on your health. I've had diabetes for almost 34 years, and I know the pitfalls intimately - But I also know that you've been given the opportunity to own your diabetes - And I say go for it!

"Guy on My Left" looked at me for a good thirty seconds and said: Yeah, I guess I see your point.

Me: Diabetes is a life sentence, it doesn't have to be a death sentence - The choice is yours. Explore the Diabetes On-line community (and I went on to name and write down various community sites & blogs) and explore all the great tools that are out there. And find a Diabetes Educator who will work with you as a team, and together you can work towards your good health.

Man on My Left: Thanks for the info, I'm really going to look into everything you've said and written down for me.

Man Across From Me: Yeah, me too.

And then I smiled and said goodbye and good luck and told them that the Diabetes On-Line Community could change their lives for the better. And I really believed what I said from the bottom of my imperfect pancreas. And then I went back to my mom's hospital room and hung out with her for a while.

And that's how I left it - And the choice they make is up to them ~

A PWD In Need Sends A BIG "THANK-YOU," To The Diabetes On-line Community!!!

"Act as if what you do makes a difference. It does." William James ~

The Diabetes On-line Community once again helps another PWD (Person With Diabetes) when nobody else would!

Here's a heart felt thank-you from the "PWD In Need" of both insulin and pump supplies I wrote about on August 31st.

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Kelly,

I received the supplies on Tuesday. There were 3 boxes. The insulin was just fine.

On Thursday I received another box. I am so grateful for the kindness and generosity of everyone on your Blog.

Words can not express how I feel.

My computer has been freezing up-that is why I haven't responded earlier.

Thank you all again for the Diabetes supplies.

I appreciate them very much.

If there is anything I can do for anyone please let me know.

I did not know that the Diabetes community is such a close and wonderful group of people!

I have run into a brick wall trying to explain to people how diabetes effects the body and what type of disease it is .

There should be more education out there regarding this disease.

The Blog makes me feel better about having this disease and to know so many people understand it, its complications, and that we're not alone in dealing with it.

Thank you so much for all your help.

Sincerely,

A PWD On The East Coast

Never Forget

NEVER FORGET

Of Glasses, Road Work & Mile Markers

Writers block and I don't know what to write, so I'll just write about what I've keep telling myself these past 24 hours.

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When you're working towards something, be it your health,(or a loved one's health recovery,) or your diabetes, career, relationship status, etc., the days that you move forward are the days that make you feel like your glass is half full and have you feeling that anything is possible.

The days that you take a step back can make you cry and loose hope and leave your glass looking empty.....

And the days where you just stay put can drive your crazy and not appreciate the blessing that your glass is indeed somewhere in the middle.

Sometimes instead of looking at all the road work ahead on the journey, you have to concentrate on the mile marker in front of you and be happy that you've actually made it this far on the highway, in order to get back on track.

It's those days where you have to remember the little victories from previous days make all the difference in feeling down and staying down.

Diabetes GPS Travel Patterns: Blood Sugar Left Nirvana & Arrived in Shitsville At 7pm Last Night

Blood sugars remained in the vicinity of Nirvana all week, until 7:00 pm last night, when I realized a detour had been made and we (my bloodsugar and I) had arrived in Shitsville! the tipoff being the fact that my meter was blowing a 301.

I immediately washed my hands and tested again and the number 268 flashed across the screen. It was at that very moment I began cursing both diabetes and the blood sugar meter margin for error FDA rules. Really FDA, REALLY!!!!!!

Turns out my infusion set had crapped out, and a red, hard lump surrounded my cannula.

I changed it out for a fresh one, added 301 +268, which = 569. Then I divided 569 by 2, for a blood sugar of 284.5, rounded up and did a correction bolus for 285 and hoped for the best.

Of course I'd just bought a 1/2 a Regular (a.k.a, Italian) sub on my way home from the hospital and was dying to eat it. It'd been a long day both work and hospital wise and I was hungry!

The minutes ticked by as I watched the clock, did laundry and raged bolused ever so slightly. Finally, 220 flashed across my meter at 9:12 pm - I bolus 25 carbs for 1/3 a sub and downed it.

The rest of the evening went rather smoothly, until I headed for bed around midnight.

I was all ready to turn out the lights and finally get some much needed sleep, when I realized I hadn't tested.

So I grabbed my bedside meter, pricked my finger and waited the mandatory 5 seconds to find out my blood sugar fate.

The number 83 blinked back at me and in my head I could actually hear my blood sugar LOLing at my expense.

I was far from happy and I just wanted to sleep. I decided to go for a temporary basal rate of .20 for 3 hours and jumped back under the covers. But as tired as I felt, I knew that the temporary basal rate probably wasn't my best bet.

So I got up, went to the fridge and grabbed 5 ounces of juice and a cheese stick, consumed said juice and cheesestick, suspended my temporary basal rate and headed back to bed.

Before I shut the light off I made sure a tube of glucose tabs were on my stand and I went to sleep.

Cut to this morning when I woke up with a blood sugar of 79.

And so far, so good.

It's always something in life.... diabetes or otherwise ;)

Diabetes Art Day 2011

Can you spot all the diabetes supplies? "Eye" Think you can!

Photo courtesy of my iPhone

I'm no Picasso, and the past two weeks have been incredibly hectic and stressful re: my mother's health scare, but I wanted to do something to support and promote the second annual DIABETES ART DAY.

So I took the 5 free minutes I had this morning and created the above.

Then, I snapped my creation with my iphone, mailed it to myself, and when I got to the hospital this afternoon after work, I uploaded it to my laptop and wrote my post!

I will say that the 5 minutes of focusing on something fun and creative made today much less stressful!

Lee Ann Thill of "The Butter Compartment," created Diabetes Art Day to promote the benefit of art therapy for diabetes. And I have to tell you - Working on the above for just 5 minutes but a smile on my face and lowered my stress level 50% !

While this year's submission isn't as creative as my 2010 submission, I'm so glad I participated!

Be sure to follow the #DArtDay hashtag on the twitter!