Thursday, July 19, 2018

Friends For Life Orlando, 2018

Just a few things of the many things I love eabout the Children With Diabetes, Friends For Life Orlando conference I attend last week.
Super special coin and bracelet.
People roaming the halls of Disney’s Coronado Springs wearing green and orange bracelets, and who “get diabetes," without ever uttering the D word. I LOVE THAT. 

Littles running up to me and shouting: Mama, she has a green bracelet like me!

Realizing that the young “teen” you've mentored/been friends with for years, is now a vibrant 21 year old woman with t1d who is thriving! 
Sidebar: And who promised you (and put it in writing,) that as an adult t1 woman, she will ALWAYS keep an 8 pack of juice boxes by her bed. 
Seeing the 16 and 14 year-old t1s and the awesome 11 year old orange bracelet sibling you’ve known since they were in single digits,(and missing the 16 year old orange bracelet sibling and her mamma, who were sidelined due to an injury,) are growing and becoming and it blows your mind.

Hanging at the bar with other green/orange bracelet adults and laughing with them about everything - including all the beeps and blips from all the various diabetes electronicals.

Bumping into the little boy who told you last year that diabetes “makes him happy and sad,” and who now declares “that he loves diabetes,” and he ROCKED YOUR WORLD. 
2018 and 2017.
What a difference a year makes~
Meeting a 10-year-old, green bracelet “First Timer,” and his orange bracelet wearing little sister in the lunch line, who become super excited to make superhero capes at the Dexcom booth after you explain to them that Dex's Super Hero Cape Making Station is an actual thing. 
Then green bracelet boy discusses with you (and in great detail,) about pumping, wearing a Dex, and how he gets his love of sauerkraut from his Grandmother, as he piles his lunch plate with 3 big scoops. 
You get dTechy with him and also tell him that you can totally relate to his sauerkraut obsession because thanks to your dad, you feel the same exact way about horseradish — and you both start to giggle. 
He follows you over to the dessert table and you both go for the oatmeal cookies “because they are the best,” and the giggles continue.
A few hours later, two green and orange bracelet wearing super heroes (and one with a penchant for sauerkraut,) are rocking capes and participating in your #IwishPeopleKnewThatDiabetes booth, then head over to the Beta Bionics booth and make the crazy light thingies and then give them to you, and after you'd complimented them on theirs.  :)  

My new FFL cape wearing, sauerkraut loving,
orange and green bracelet wearing, sibling Super Heroes!
Your special group of “First Timers alumni,” are now seasoned Friends for Lifers, who you have special drinks with at the pool and exchange silly texts with.
T1 Chicks & Orange Bracelet friends @ the Omnipod party for
T1 Adults at #FFLOrlando18 
D Squad goals met and exceeded because of a group of fantastical green and orange bracelet wearing chick friends who have indeed become friends for life. 
These women always encourage you throughout the year; send you wake up texts on the day you fly out to ffl; buy you unsalted almonds and water at Publix, ply you with British chocolates, understand your “L Explorer” and “GM Running Club” references, and always make you laugh!

Sitting at the bar and watching your “diabetes brothers” totally nerd out over Disney’s Avatar Ride, while you and your D-Sister can’t stop laughing at and with them.

Attending adult t1 support sessions about diabetes burnout and diabetes complications in a judgment free zone. 

Your D mama friend who once again makes sure you’re OK with juice boxes and bottled water. 

Orange bracelets who have become friends for life!

Watching your t1d friend experience FFL for the first time and through her eyes.
You forget that she’s shy because she's anything but with you. 
And you burst with pride as she reaches her goal to meet 3 new green/orange bracelet wearing friends in one hour at the bar.

Discovering that the shy little Ninja Turtle loving, 4 year old green bracelet wearing boy from last year is now a talkative, confident, and positive Spidey Super Hero with a huge smile and an amazing attitude!

Experiencing one of the worst lows of your life surrounded by people who love and help you, and continue to check in with you throughout the day, into the evening, and well into the next day - and in a way that doesn’t make you feel like a burden. 

And you are so incredibly thankful that they were there.

Realizing a few days later while talking with your diabetes brother about that low, that maybe it’s time to do something you’ve been putting off for a while. 
Sidebar: More on that later. 

Standing at the ice machine on Friday afternoon after a long day of sessions, attempting to fill a ziplock bag with ice, so you can ice your broken toe (long story), and failing miserably, because the goddamn ice keeps spilling EVERY WHERE and you are about to lose your proverbial shit.
Then you feel a slight brush against the side of your thigh and exactly where your omnipod and purple grip are, followed by a little voice that’s barely a whisper, saying: I like your gripper and your Omnipod. 
You turn around and see a little girl with blond hair, wearing a blue and green bikini, with a pod on her belly that’s surrounded by a super cool black oval grip— and she’s looking up at you with a broad and shy smile.
And you know it must have taken all the courage she could muster to walk up and start a conversation with you.  
Your heart melts and you respond: I like yours too. 
And then you both start talking about all things diabetes — your new D friend is a year and a half in and her mom is watching and smiling. 
All of a sudden you’re not frustrated anymore. You’re happy and want to hug this amazing little girl and tell her that’s she’s exceptionally awesome, because she is, so you do. 
You’re glad you’re wearing sunglasses because you know your eyes are on the verge of leaking. 
Then her mom grabs your arm and thanks you for “doing what you do because it’s amazing,” and you feel your cheeks turning red. 
You thank the mom for all she does, tell your new friend that you’ll look for her in the pool and in the hallways and she promises to do the same. 

You say your goodbyes and walk in the direction that may (or may not,) lead your back to your room, as tears start streaming down your face and in the best of ways.

And once again you are reminded how much you need to be at the Friends for Life Conference in Orlando - for yourself and for others.  
And how much #FFlOrlando18 recharges your diabetes batteries and your spirit - and you are so incredibly grateful~

Monday, July 9, 2018

I'm Off To #FFLOrlando18

I'm heading back to Orlando this morning to attend the Children With Diabetes, Friends For Life Conference, at Disney's Coronado Springs Resort. 
And #FFLOrlando18 on the Social Media - and I can't wait! 
This is my 6th year attending (which blows my mind,) and it's a week of being surrounded by people who "get diabetes in all dimensions." 
It's a week of sessions about living with diabetes and support. A week where green and orange bracelets rule, carb counts on all the group meals are the norm, not the exception, and official low blood sugar stations are around every turn. 
It's a lot of laughter, a few tears, and an enormous amount of hugging with friends you haven't seen in 365 days, friends you ate breakfast with, or friends you just met!
It's meeting new friends at every turn because if you wear a green or orange bracelet - you are immediately part of the gang. 
I received/responded, to the following text from one of my DMama friends last week, who wanted to make sure I had enough juice boxes and water in my room because she knows me (and she knows my preference for Elmo Fruit Punch Juice boxes;) she gets me, and she knows and gets diabetes. 
I think it perfectly sums up how the friends you make at the Children With Diabetes, Friends For Life conference - really do become friends for life! 

Wednesday, June 27, 2018

Kismet: Attending #2018ADA As A Guest Reporter For Ascensia

Kismet has been occurring as of late and I'm embracing it!
For instance, I was able to attend The American Diabetes Association's 78th Scientific Sessions last week in balmy (code for UBER HUMID,) Orlando, Florida - and thanks to Ascensia Diabetes Care, who hired me to write a 3-part series re: my experiences as a person living with diabetes attending ADA. acting as their official on-site Guest Reporter for ADA 2018. 

ADA was awe inspiring; incredibly overwhelming, physically never ending, a total sensory overload, and IT WAS AMAZING! 
I learned so much, met incredible people,  reconnected with diabetes friends and colleagues. 
My first post is up and running and it's all about diabetes data; dtech, helping other people with diabetes in under-served communities and a very cool WHISK. Click  HERE and give a read!

As always, while Ascensia paid for my flight, hotel, and travel expenses, and provided me  
with an honorarium for my time and skills - ALL THOUGHTS are mine and mine alone. 

Tuesday, June 12, 2018

Diabetes And Periods - In This Case - My Period.

Yeah..... NO. 

Yeah, I’m getting personal - I do that on this blog - so if you don’t want to hear about me talking about all that is the glory of having my period and diabetes - OH WELL. 

I’m on the last 24ish hours of my period and I am fucking tired.
Diabetes and periods - at least for me, can mean either relatively mild symptoms and elevated blood sugars for a few days prior to Aunt Flow actually getting her “flow on,” and blood sugars that are perfect, low, or elevated - or a wicked and sometimes manic trifecta of all three, during said period. 
And sometimes not relatively mild at all.  As in not much of an appetite; boobs being tender (yes, as in it can actually hurt to shower, unless the shower-head is set to the "Gentle Rain setting", stomach issues, salt cravings, bloating, emotions, as in #POGDogs making me cry like a baby, and bitch cramps to boot. 
It depends on the cycle. 

And because of strokes, t1 diabetes, and heart issues, run in my ginormous family tree (as does tenacity, talent, good looks, and humor,) - I am not a candidate for the pill.

PSA - THIS IS IMPORTANT: If you have diabetes and are considering birth control methods:
1. Be honest about your diabetes diagnoses and your family history with your Gynecologist, Planned Parenthood professional, or GP - because the pill can be dangerous depending on your family history of strokes, heart attacks, and diabetes
2. Make sure all your doctors are on the same page 
3. Pill, IUD, or Diaphragm, you still need to use condoms to prevent the spread of sexually transmitted diseases. 


Also: I was anemic as kid, and my iron has been on the low side of normal for years - so there’s that. Luckily I have a friend (NO, not that friend, but I could see how you'd go there,) who could totally relate and recommended that I try Blood Builder supplements since last summer and for me, it's helped even out my iron levels (which are now on the normal side of normal,)  and my energy…most of the time.

We know that hormones and diabetes are never a smooth ride - don’t even get me started on cortisone!
But as women with diabetes know, hormones and periods, being premenstrual or para-menopausal, or post-menopausal the hormonal douche-baggery (yes, I absolutely meant to use that phrase,) can be brutal.

Like I said, for me, some periods are worse than others - sometimes killer cramps, sometimes not so much, plus everything else I've already mentioned.- 

This time around, it was on the worse side - at least for the first couple of days. 

So even though my blood sugars were pretty damn good over the weekend - I spent a lot of time on the couch, chilling out, wrapped in a blanket and drinking hot tea, while snuggling with my friend’s cat  (OK, not snuggling because she’s not a snuggler, but she did let me pet her while she leaned against my leg,) and watching season 4 of Shetland (because Netflix is dropping the ball, BIG TIME,) and #POGdogs on Britbox. 
Sidebar: It rained all weekend so I wasn’t compelled to be outdoors. 
Also: It pays to house/pet sit for friends with Amazon Prime! Which I’ve stubbornly avoided getting, but am now strongly considering - and it’s all The Marvelous Mrs. Maisel’s fault!
God, so much great writing, acting, set design, costumes and coat porn! 

In the "70s' and "80s,"
periods were all about riding horses, bikes, and windsurfing.
But back to diabetes; hormones and periods, being premenstrual/para-menopausal, or post-menopausal, and if you feel like sharing - great. 

If you don’t - I get it and no pressure.

And if you are a guy - I hope you’ve learned something - Also: MENSES. 
You know I was going to sneak that word in there !

Wednesday, June 6, 2018

Almost Wordless Wednesday: Advocate Everywhere

"ADVOCATE EVERYWHERE," are the words printed on the front of one of my
favorite T-shirts, obtained years ago (maybe 2013 or 2014,) from the Diabetes MasterLab, which at that time, piggybacked CWDFFL, in Florida. 

And they are words that continue to inspire me in my life... and my life with diabetes. 

I wear this shirt because I love the message and the spirit 
behind it. 
I love how this message sparks
conversations whenever and wherever I wear it. 

Lastly, I love how it encourages us to use our voices individually and collectively, because all our diabetes voices matter and no act of advocacy is too small. #AdvocateEverywhere ~

Thursday, May 24, 2018

What I Learned About Afrezza

At the end of April, I attended a meeting with Mannkind, the company who manufactures the inhaled insulin, Afrezza, with a small group of Diabetes Advocates and .Orgs at their HQ in Danbury, Connecticut. There we had the opportunity to meet with senior members of the company, including engineers and scientists and discuss Afrezza and Social Media.
I went in not knowing much about Afrezza, but was curious to learn all I could. 
I have friends (both on the pump and MDI,) who are fiercely loyal to Afrezza and I’d tried it once with positive results - more on that later. 
I went in with an open mind and hoping for another diabetes option for us.
Here’s what I found out. 
Afrezza is a crystallized, inhaled, powdered form of Regular insulin that works quickly via the lungs and the bloodstream and is used for mealtime dosing.

Afrezza works fast - as in wicked fast. As in it starts working in 3 to 7 minutes, reaches its peak in 30 minutes, and out of your system within 1 to 2 hours. 
Basically, the short time in the system helps to prevent low blood sugar hangovers - my words, not Afrezza’s. 

Other short acting insulins (Apidra Novolog, Humalog), take 20 plus minutes before they start to kick in.
WHY? Because being injected through skin has a slower turnaround time than inhaling.
Injectable insulins peak in 2 hours and exit the body somewhere between 4 and 7 hours.

As far as the Billing Code, Afrezza uses the same billing code as an insulin pump - so check your Durable Medical Equipment clauses in your insurance policy. 

FYI: Exercise activates Afrezza.

Clinical Trials
Clinical trials for Afrezza have shown no evidence of long term lung 
damage to patients. Our group was told that the reason why people have lung tests be
fore starting Afrezza is to rule out any unknown/underlying lung issues like COPD. 

Bitch Lows and preventing them 
Afrezza has been shown to reduce severe hypos by more than 30%. THAT"S BIG.
Dosing: Afrezza inhalable insulins are currently available in packs of 4, 8,12. 
Afrezza’s unit amounts differ from injectable insulin units -HealthCare Pro's help 
with the learning curve.
Friends who use Afrezza say it wasn’t difficult to get with the Afrezza program.
User Breakdown
Afrezza users are evenly divided into type1s - some of whom combine Afrezza with 
using their insulin pump. Using their pump for basal rates/correction boluses and 
dosing Afrezza for meals.  
The other 50% are type 2s.
Some users on both sides of the diabetes fence have experienced weight loss. 
Sidebar: There is currently no info re: LADA1.5 users at this time.

Is there a Patient Assistance Program? 
YEP. Go to Mannkind Cares Start Out Program and here's the link to the Patient Savings Card.

My Own Experience with Afrezza
My one experience with Afrezza was 3 years ago and it was a positive one. 
I was attending the Diabetes UnConference in Atlantic City and was out with some Diabetes Online Community friends who came to town early the night before the conference began. 
After copious amounts of Crab Nachos and bolusing multiple times - I could tell something was wrong. My numbers kept going up - even with an increased temporary basal rate of 40%. 
It turned out that my Medtronic infusion site had crapped out.
I had another infusion set with me, but low and behold that new site didn’t work either.

Yep, I was screwed. My blood sugar was well over 300 and I felt it.
I had two choices: Go back to the hotel a few miles down the boardwalk and change out my site, or take my friend M’s advice and try his 4 unit Afrezza and inhaler.  
I went with the Afrezza, inhaled, and 2.5 hours later (plus 1/4 of a turkey club,) my blood sugar was 167 - and I was happy.  

Closing Thoughts
I was impressed with what I learned about Afrezza, and while I don't want to give up my Omnipod, I would consider using Afrezza with my Omnipod therapy - and I'm going to discuss that with my Endo at my next appointment.
Also: Your diabetes is different from mine and collectively, people with diabetes need as many viable and beneficial diabetes options on the table as we can get!
Afrezza is an option. 

Disclosure – My expenses including travel, food, and lodging were covered by Mannkind,  and I was paid an honorarium - which I appreciated. 
With that being said, all thoughts are my own and I was not asked to write about Afrezza - but I did because I wanted to share what I learned with you - and now you know ~ 

Thursday, May 17, 2018

Diabetes: A Bitch Low Blood Sugar - And Waiting It Out At The Deli

I stood at the convince store/deli counter, clutching it with one hand and holding/downing a Nantucket Nectar Lemonade with the other. 
I'm sweaty and it feels like my whole body is shaking  — but I'm not sure.
I need to focus on drinking the lemonade and staying calm, so I do. 

The bitchlow had come out of nowhere  — and I was dropping fast. I’d been walking on the main street of my town when I broke out into a cold sweat — and right near the deli.
The register was on the other end of the circular counter and the woman behind the register watched me. 

I struggled to find my words and finally said: I’m sorry, but my blood sugar is low, I need to drink this now.
I was out of breath and as I spoke and my words didn’t tumble out of my mouth — my speech cadence was slower than normal and my mouth was numb. 
The woman walked over to where I was standing and said: It’s OK, I have diabetes, I know exactly how you feel. Sit at a table and pay me when you feel better — and let me know if you need food. 

And that’s what I did. 
I sat quietly at a table and watched the clock on the wall as the minutes ticked by. 
I finished three quarters of the bottle and waited until I felt stronger. 
I ran my hands through my hair out of habit and I felt the tears stinging my eyes.
I’ve noticed that when I get a bitch low that stops me in my tracks, I end up fighting back tears. 
My face is pale during the low, but as my blood sugar starts to come up, my eyes start to sting, and I can feel my checks turn red. 

I think part of my tears are due to the fact that I've  fought so hard to stay in control during the low, that an emotional wave of relief floods over me as things start slowly shifting back to normal and my eyes start to swell - and the other part is diabetes and my body's reaction.

And I hate this feeling. 

I hate feeling that if I don’t drink or eat I will crash to the ground. 
I hate that my words are halted and that I feel weak.
I hate that I am on the verge of tears. 
I hate feeling helpless, weak, scared, and determined all rolled into one.

I hate feeling alone. 

But for this particular blood sugar, I am incredibly grateful that I have a place to wait it out — and a person who watching from the sidelines. 

I glance at my medical ID bracelet and I feel myself calming down. 

I check my blood sugar at the twenty minute mark - I’m 83. 
Even thought the juice was over 60 grams of carbs, I decide to finish the bottle, wait another five minutes and then went up to pay the woman behind the register. 

She looked at me and said: Feel better, honey?? 
 I told her I did and thanked her for letting my pay after things settled down  and for “getting it.” 
She doesn’t want to take the money and I insist she does. 
I say goodbye, walked down the block to my car, get in and sit for a bit. 
Tears are streaming down my face at this point and I'm glad I'm wearing my prescription sunglasses. 

I’m home 10 minutes later and 50 minutes after that I check my blood sugar again. 
I am 116. And at that moment I am glad I drank that whole damn bottle.

And I breathe deep, walk to the bathroom and look in the mirror. 

I am a hot fucking mess - and not in the good way.

Mascara running down my eyes, tears stained cheeks, and I look a sad. 

I wash my face, and say THANK-YOU out loud. 
And I mean it. I am thankful that lows like that don’t happen very often, and I am thankful that I'm OK.
Then I smile at my reflection and forge ahead.... towards the couch. 
Dinner can wait, for now I'm going to chill.