Apr 30, 2013

Day 30 of 30!!! RECAP!!! We did it!! #HAWMC


Wow!! I (we) did it! (Sorry...I'm double posting for Blue Heel Society AND Captain Jackson's Hemophilia Adventure)  I always enjoy participating in WEGO Health's: Health Activist Writer's Monthly Challenge. The prompts get me to think outside of what I might normally post...which is good and sometimes funny! This month I started out blogging in Florida with our FIRST family vacation since having Jackson, our hemophiliac son, who is five years old and our second T1D diagnosis. Talk about independence!! It felt great knowing we could infuse our son ourselves and take care of our girls. Packing for three kids with chronic illnesses is so nerve wracking! But I got it all packed! Then I nearly ended the month in Texas while attending a Hemophilia convention. So in 30 days I've managed to blog in 3 different states...pretty good for a family who hasn't gone anywhere in years! I hope you have enjoyed following our blog posts everyday and THANK YOU to those who did!! I am humbled by your support. I will tell you this now...I'm taking a break from blogging...just a little one (for those of you that know me; you know it will only be a day or two!!)

To sum up my #HAWMC experience in one word:

supercalifragilisticexpialidocious


Apr 29, 2013

Day 29 of the WEGO #HAWMC: "Congratulations"



For todays topic, we are asked to "Share three things you love about yourself, things you’re great at, or just want to share. We all know Health Activists are awesome."

Today is the next to last day of #HAWMC, and my final post for the Challenge. I cannot tell you how much these blogfests mean to me, and I want to thank all of YOU for reading and sharing during this Month. I certainly could not have done it without my partner in crime, Jen Loving. You want awesome, Jen is the definition of such. Not only did Jen contribute to the BHS blog about her TWO Type 1 Daughters, but on her other blog where she relays her journey of a Mom to her Hemophiliac Son.

I tried...I really did, however, I cannot in good conscience talk about what I love about me (although I do), nor can I acknowledge things I am great at (although there are). Do I feel Health Activists are awesome, I certainly do!

Here's a little caveat, and let me contradict myself briefly.

I am pretty good at remembering that as a Health Activist, where would I be without our Bluetiful Friends/Fans/Followers? If it wasn't for our wonderful little Society, I, as an Activist, wouldn't have anyone much to Advocate FOR. If it wasn't for YOUR AWESOMENESS, who would we have to wear our Blueness for?

Yes, all Health Activists are awesome, but the reason I advocate is for ALL OF YOU. For without you, I would not be, and YOU are certainly the awesomeness I am here for. So the "Congratulations" MUST go to all of you...



Apr 28, 2013

Day 28: #HAWMC: Must Follow!!

Today I'm going to share the top 5 MUST follow facebook pages, websites and/or blogs for diabetes.

1. Of course, ALL the major diabetes organizations. JDRF, ADA, DRI...these are the go to's for anyone newly diagnosed to the veteran diabetics who maybe need a little help somewhere. Great resources to get you connected locally to your chapter, find mentors, ask questions and hear about research.

2. Diabetic Barbie/Amy Ermel...I know I've sung her praises before but she's a great lady who lives in Canada and just wants to see her daughter's dream of making a Diabetic Barbie a reality. If you haven't liked her page yet you can find it here. I'm blessed to call her my friend.

3. The TheAngryType2Diabetic is a great resource for Type 2 diabetes. I love Lizmari and have learned so much from her. She is a great advocate for Type 2 and posts some great research and findings on her page and/or blog. She is my go-to person when ever I have questions about Type 2 or when someone contacts me with a new Type 2 diagnosis.

4. My friend, Meri Schuhmacher, who blogs over at Our Diabetic Life. She is a fellow D Mom who has 3 out of 4 kids with Type 1 Diabetes. After my second daughter was diagnosed I messaged Meri and just thanked her for being such an inspiration to me. It was because of Meri that I knew our family would be okay with our second diagnosis of T1D.

5. I have saved the best for last....my dear, dear friend and co-"worker", Thomas Moore. If you aren't friends with him, seriously, go do it NOW!! Thomas is one of the greatest researchers I know. My notifications ding several times throughout the day with his status updates or links he has shared. He puts in so much effort in his quest to educate about diabetes. I learn so much and I thank him for his tireless work!


Apr 27, 2013

Day 27: Titles #HAWMC



Today's post is to come up with 5 working titles for names of books if I were to write one about our life, our community, our health condition. Here we go...

1. Buns Fingertips of Steel

2. The Babblings of a Sleep Deprived D Mom

3. It's fun to chat with the D-O-C (to the tune of YMCA...I know..it's a song and sorry it's stuck in your head now!)

4. Ahhh...I See the Diabetes Screw Up Fairy Has Visited Us Again

5. DIABETES...an EXACT Science (bawhahahahaha!!)



Apr 26, 2013

Day 26: Free Pain Pass #HAWMC

If you could use a pain free pass when would you...

There are a couple of times I would want a pain free pass for my girls and their diabetes care. 

1. The yearly blood draw. They HATE that and I hate it for them. My poor Nora will have tears streaming down her face during the Endo visit right up until they draw the blood. 

2. Ketones and High blood sugar. I don't know if this actually causes them pain...I know they feel like crap. It wears them out. And they can do nothing...well, they feel like doing nothing until blood sugars are in range. Even then they aren't themselves. I hate those days when diabetes "wins". My girls are so upbeat and active and those days, thankfully are few, are days that just suck. 

These are the days I wish for a pain free pass. 


Apr 25, 2013

Day 25 of #HAWMC: Learning



Today we are asked to "Share something you learned from another Health Activist (that everyone should know!)."

One of the most important things I have learned on my journey as an Activist very early on, was that I really didn't know a darn thing about diabetes. More importantly, I learned that understanding  how important focusing on the DIABETIC is, not just the disease.

Once I started doing so, I also found out that I learned the need to UN-LEARN everything I thought I knew about people, in order for me to be the best Caregiver possible for my favorite Diabetic.

Probably the most important thing I learned about being a CareGIVER to my Wife, is that I am usually more of a CareTAKER, as i am probably more high maintenance than she is!!!!

The most difficult thing I have learned is that while we await a CURE, is that in essence we are doing mini-cure's all day long, as we work towards the best control possible. I learned that even with nearly 300 medications on the market, we are not much closer than when I started my journey.

This all brought me to realize that patience is the BEST things I have re-learned...


Apr 24, 2013

Wordless Wednesday Day 24 #HAWMC

Today's challenge was to create a Pinterest Board for your health condition and pin three items.

You can check out our Diabetes Board HERE.

Enjoy!

Apr 23, 2013

Day 23 of #HAWMC: "Technology"



Today we are asked to "Write about how your life would change if there was no social media."

Seems odd using Social Media to explain how my life would change without it, but here goes.

I would not have had an outlet to help keep my favorite Diabetic alive.
I would have never found the Diabetes Online Community (DOC).
I would have not had the opportunity to try and help others.
I would have not had the opportunity to help a young Man in Indonesia save his life, and go on to prosper.

There are a hundred more reasons my life would change, I only chose to highlight a few...


Apr 22, 2013

Day 22: of WEGO Health's #HAMWC: "Day to Day"



Today we are asked to "Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism."

I again observed my favorite Diabetic in her role as a Caregiver to her Father, and me, just waking up. First thing she did BEFORE anything, as she does everyday, is ask me if I want coffee, then right away turning her attention to her nearly 79 year old Father until his wake up needs are met. This morning ritual comes before everyone and anything...ALWAYS.

Something ordinary...to most.
Something inspiring...every single minute of every single day.
Simple...not by any definition.
Fuels my activism...more than anyone know's.

As a Caregiver, I strive to be just like her. Problem is, I can never be like, or as good as my favorite Diabetic. The circle of life isn't always round...


Apr 21, 2013


"The flower that blooms in adversity is the rarest and most beautiful of all."-Mulan 

True or false? When do you bloom best?

Today, I'm asked the above question. As most of you know I blog for Blue Heel Society for diabetes and my personal blog for Captain Jackson's Hemophilia Adventure. I have been double blogging all month long for the WEGO challenge. Posting separately for both. However, I will be double posting. I hate to do it. It's not a cop out but really it applies to both blogs.

To answer the question; yes, I bloom best during times of difficulties. Maybe too well...that's why I've got two with Type 1 diabetes and one with Hemophilia. I see it almost like a challenge...like a "HEY you!! I'm gonna throw this curve ball at'cha and see what you do with it. Ready, set, GO!" It started in the hospital the day I delivered Jackson. My parents brought the girls to meet their new brother. It was there that the eldest needed her newly placed braces cranked for expansion, the middle one needed an insulin pump site change AND Jackson needed a diaper change. Seemingly all at the same time. It was then the forces were set in motion and I said, "BRING IT!" I must have said it too loud...someone was listening.

My brain is hard wired for stress and difficulties. It's like putting together a new puzzle with no picture. My brain starts assessing the situation or the challenges that are laid in front of me. I organize a plan and execute. It's taken care of within minutes...at least the plan is. I think I drive my hubby crazy as I start barking orders to extinguish the difficulty flame and it's put out before he has time to process there was even a fire. It isn't a dog on him...it's just how I function. I accept the challenge(s) and then make it wish it never messed with me.



Apr 20, 2013

Day 20: of WEGO Health's #HAWMC "Burnout"




Today we are asked to "Write about burnout. What does it feel like? What are your burnout triggers? What gets you OUT of the pit of despair when nothing is going your way?"

From a standpoint of a Caregiver/Advocate, burnout is one of my biggest nightmares. If and when it happens, I have to get rid of it FAST.

All of us affected and living with diabetes in our life, can attest to the fact it is a 24/7 intruder. We barely have time to actually live our "normal" life, so when it is disrupted with diabetes micro-management during our day, it can tend to throw us a detour.So, does anyone really have time for burnout? I know I don't. Do I  experience burnout? Yes, I do, but I have to try real hard to not let it dictate anything I do. One little minute of doing so always turns into more time than I have available for burnout.

If I show any burnout, it right away spreads into wildfires into that "normal" life, and I sometimes just want to take a break...wait, sometimes I just want to shutdown completely, and throw a backpack on and check out. Not like dead, like checking out of a room.

Triggers, well not really. Usually goes right past triggers to explosions...

What get's me out of the funk and past any triggers, are triggers. They remind me to work past them and try to actually 'fix' what causes the triggers. I also remind myself that if I let the triggers/causes actually shut me down, it is a very bad thing. So a tad of burnout, is better than shutting everything down.

But my favorite way to get past the triggers, is music. So enjoy this piece (above) from the Album appropriately titled "Out Of The Blue", and I hope you agree that "It's better to burn out, than to fade away".

Apr 19, 2013

Day 19: #HAWMC: Vintage

Today I am to post a vintage picture with a caption and share with you where we were in terms of our health condition.

Today I post two photos for my beautiful girls...as far as being vintage...one picture is almost 8 years old from back in 2005. The other picture is not quite one year old yet.

Nora age 4 dx'd 6-13-05 

This was day two in the hospital. Truly scared of this new world of Diabetes. 
-
Evy age 17 dx'd 6-1-12 (just 5 days before her 18th bday)

This was day 1 1/2 in the hospital. Pissed because we knew this world of  Diabetes. 

Apr 18, 2013

Day 18 of #HAWMC: “I take it back…"






Today we are asked to "write about a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go."

This was going to be another opportunity to talk about medication errors and taking the wrong insulin at bedtime. Part of the root cause, in my opinion, was correcting any high BGL's with fast acting (insulin injection to treat any high BGL's) & bolusing (injecting insulin to cover a meal), and also drawing/injecting long acting insulin for bedtime, AFTER eating [dinner]...all at the same time.

Even when I just explained what I think the problem was/is, it sounds THAT much more problematic than I even think! Therein seems to be MY problem...

My problem, because as I am reminded by my favorite Diabetic, every time I try to preach what I think are proper methods to approach mealtime, I am reminded that "it is MY body, not yours".

My problem, because I am reminded that "my A1c has never been higher than 7.1%".

I instead choose to "whisper words of wisdom...Let It Be" and let it go...

UPDATE: I forgot to mention that we have this micro-battle EVERY single mealtime, and I lose every single time!





Apr 16, 2013

Day 16 of #HAMWC: "Misinformation"



Today we are asked to "Tell us 3 things that are true about you, your condition, or your Health Activism. Tell us 1 lie. Will we be able to tell the difference?"

So much misinformation, so little space! Let's keep it short and sweet, as I ask you to answer this multiple choice question.

Which answer is NOT true:

1. Girls are made of sugar and spice.
2. Sugar makes diabetes "worse".
3. Sugar is carbs.
4. Carbs are sugar.

Enjoy...

Apr 15, 2013

Day 15: #HAWMC Sharing

Diabetes sucks...this is nothing new...you ALL know this.

I will say, I have "met" some great people because of diabetes. Some in real life and others on-line.

I'm not even sure how I stumbled upon my friend, Amy Ermel but I found her, I liked her instantly and she's just awesome!

She has a daughter, Emma, who is a T1D and has made it her mission to create a Diabetic Barbie after hearing about a Cancer Barbie. If Barbie can have Cancer and help kids dealing with Cancer themselves why can't the same be said for Diabetes (or any other illness for that matter)?! I LOVE Barbie...she holds a special place in my heart the hours of playing and changing outfits when I was a kid are priceless. So I was in!

Amy writes a blog called Mom of an extra sweet insulin challenged girl. And today's challenge is to share one of her blog posts and write a comment to her.

Her blog post is called My Sisters. Head on over a take a quick read...I'll wait...go on :)

Dear Amy,

I completely understand this post. I agree, if you would have told me almost 8 years ago that I would be thrown into this crazy D world but find some of the BEST people I would have called you crazy!! D Moms (and D Dads) just get it. It's an unspoken language. The black circles under our eyes speak volumes. The sleepless nights are a given. Outsiders equate the sleepless nights as having a newborn...kinda...but with D your scared for your kids lives hourly, daily, monthly, yearly, until they find a cure...you know! We D Moms speak a different language. Temp basals, increase/decrease, ketones, sensitivity, carb ratios...I'm sure if a passerby was listening in they think we were from a different land. Yep, we are, D-Land.

This D group is a group that we rally, pray, send positive vibes, whatever we do, for each other,   We slap virtual high fives for celebrated  IN RANGE A1C, We pick each other up when the 3 month Endo visit doesn't go so well. We send virtual hugs for our little ones who are fighting lows in their sleep as us Moms and Dads are up force feeding them with skittles, juice, icing, etc.to keep them alive.

You are right, Amy, we ARE sisters (although at times I swear we are related!!!) with every single D Mom  (and Dad's too!!) out there. I am happy to call you my friend...I am happy to call you my family!!

Your Sister,

Jen


Apr 14, 2013

Day 14 of #HAWMC: Spread The Love

The Blue Heel Society Team


Today we are asked to "Thank a few of your fellow Health Activists for what they have done"

Allow me to somehow relate the Christmas card to my post today, in a way other than just admitting I am lazy, nor do I do Photoshop! It is the only pic I know of that has the entire BHS Team in one place, thanks to the magic of our Chief Content Officer Jen Loving.

There are so many D superhero Activists to thank that I have been honored to meet and work along with over the past five years or so, and that would end up taking up more of your time than needed. Instead, I know of a small and select group of those superhero's that are all in the collage above. I am so humbled to call them my friend, and even better my Family.

Today, I would like to profoundly thank the BHS Team for all that they have done, much of it behind the scenes. More importantly I would like to take this opportunity to thank them much more, for what they have *NOT* done.

Despite the intense and demanding personal life they live, they do *NOT* back down or simply give up when it comes to a chance of advocating for another.

Despite being ill, having micro-emergencies during the day to deal with, they do *NOT* allow it to get in the way of helping a true stranger in any way possible.

Despite having many reasons in life to take the easy way out and simply say 'screw it', either personally or in advocacy, they do *NOT*.

Despite being a heard by many, millions if you look at our Facebook metrics, interviews, public speaking gigs, you name it...they are famous, they do *NOT* let it go to their head.

In closing, and something so very close to my heart, despite the many personal challenges I have had, despite having a plethora of their own challenges to deal with, despite having many opportunity's to just say "Tom, you kinda screwed up", they do *NOT*.

Instead, I am given the latitude and space needed to try, as we all do, to be the best warrior I can be, in everything the BHS Team needs. I don't have them constantly looking over my shoulder at what and how I work.

In closing, I am *NOT* thankful for them, I am Instead blessed, by knowing Diane, Jen and Tony, and knowing they have and always will be there for me no matter what...Tom


Apr 13, 2013

Apr 12, 2013

Day 12 of #HAWMC: Hindsight

Julie with our 1st Granddaughter Mia Moore

If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what
would you say?

This topic hit's really close to home as I am reminded of a conversation I had with my Father after my Mom passed away. He shared how while sitting in the mortuary saying his last goodbye's, he spent an hour apologizing to my Mom for not being more sensitive to her needs, not allowing her to work after us kids were a little older, and basically for not really knowing her likes and dislikes. He felt he held her back from enjoying the things in life that he didn't know she liked.

I live life everyday keeping those thoughts very close to my heart, and work tirelessly making sure I don't have to do the same with my favorite Diabetic, my Wife Julie. Am I guilty of some of this, yes I am.

If I could go back to the day of diagnosis, I would tell myself that first and foremost, I love Julie unconditionally, and to carry that love into my duties of a Caregiver. I would also remind me that I am a Friend and Husband first. I would make sure that I knew to not smother her in everything diabetes. I would especially tell myself that understanding, patience, and being foregiving must be paramount to anything. I would tell myself to try extra hard to not be the 'Diabetes Police', especially as I separate Caregiving duties from Advocate duties.

But the most important thing I would tell myself, is that no matter what...we got this!

Apr 11, 2013

Day 11 of #HAWMC: Favorites

Today's challenge is to share my favorite health app on my iPhone. Well...I don't have a favorite app for my iPhone...I have one for my iPad. It's called My Healthy Tale and it's a diabetes app for kids. It is something that I wish I had when my then 4 year old daughter was in the hospital with her diagnosis.

The My Healthy Tale app is best described here:


"My Healthy Tale is a fun-filled educational tool that teaches children how to manage their diabetes through story telling and answering questions along the way. The best part is, My Healthy Tale tracks the learning progress of the child and informs them and their parents on how well they are learning and provides tips to get better! Whether you are newly diagnosed or just need help managing your diabetes, My Healthy Tale is for you!" 

The reason I like this app is that it helps the child understand why you, the caregiver, are doing the poking, sticking, carb counting, weighing, monitoring of diabetes. When I look back at Nora's diagnosis in 2005 there was nothing out on the market to help her understand why we were doing all this to her. In her mind we were coming at her with needles and hurting her. This app walks through a typical day and uses diabetes words (that unfortunately they learn too quick) and explains, in an easy to understand way, what you need to do to care for diabetes.  The My Healthy Tale app is geared for ages 4+ but I will tell you, Nora who is 12, was just as intrigued with it and said she really wished this was available years ago. 

More stories are being created, as well as, being designed to fit the iPhone and made available as an iPhone option. Nora and I were privileged to meet the developer of the My Healthy  Tale app and weigh in with our diabetes knowledge. Seeing an idea in the early stages and following it through to helping T1D kids has been wonderful. Best of all...the app is FREE!! It's available through iTunes but remember it's only for iPad's right now. I'll be keeping you posted on more to come from My Healthy Tale! 


Apr 9, 2013

Day 9: #HAWMC Caregiving



How appropriate that today's WEGO prompt is Caregiving.

I am stuck in what seems like the Bermuda Triangle of Caregiving, and also reminded that diabetes takes no vacations, holidays, and certainly doesn't care that we have been moving. All the way throughout the Move, we have been able to keep a handle on everything D related...until yesterday.

So as I put on my Podiatrist hat and treat a wound that has opened back up, allow me to remind you diabetes, that your butt will get kicked again and again and again. So enjoy your moment in the sun while you can. Your day's are numbered...

Apr 8, 2013

Day 8: #HAWMC Animals

Yesterday I was looking ahead at the prompts for our writer's challenge and looked to today's post:

If your health condition was an animal, what would it be?

So I asked my 12 year old diabetic, Nora, and she said a lion. She never did get to tell me why as her 5 year old brother went on an animal explanation of his disease.

I thought about it though. A lion as diabetes.

I like it.

You see, when we go see the lion's at the zoo they are just laying there...tired, lazy, rather bored that a bunch of bystanders are checking them out. They look so cute...all soft and cuddly. You just want to snuggle up with them. But you know their power and strength. There is a reason they are King of the Jungle. Docile one minute; ready to attack the next.

Kinda like ... diabetes.

You can't see diabetes. But you know it's there. You can't cuddle with it but it's there rather bored with all the precautions, finger sticks, prebolusing, temp basaling, all nighters that you pull as a D-parent. At times diabetes is docile. You have a great day with in range numbers and forget all about this stickin' disease. Then there are days when it attacks. Usually at the worst possible moment. During a test. Before bed. While driving. Before a big game. A low while your trying to take care of another kid...you know...we've all been there.

I think Nora was onto something here...diabetes is like a lion...when it roars...we listen.

Apr 7, 2013

Day 7 Ridiculous Cures #HAWMC

Today is Ridiculous Cures for diabetes. We've all heard them...

1. Cinnamon

2. Alkaline diet

3. Moss (but only the one growing in the southern hemisphere on the north side of some tree)

4. Sea Moss (apparently...moss must be good...may have to find some and blend in a smoothie!)

5. Raw Food

I know there are more but truthfully I'm getting pissed off researching this topic.

Never in the almost 8 years that we have been dealing with Type 1 diabetes have I ever been so desperate to search for cures on line. I'm more of a this is what we've been given, how we are to deal with it and how to keep my girls alive kind of person. If there was a cure at the time of either diagnosis the Endo would've said, "your daughter(s) have diabetes but I'll write a script for some xxx and it will make it go away".

Do I want a cure? YES. But not at my girls' expense of trying these crazy cures and possibly causing them harm. When the cure comes it won't come on some grocery store tabloid announcement. It won't be talked about casually like how to remove warts or get rid of acne. It will come...maybe quietly at first...and then it will be HUGE! Especially after clinical trials and FDA approval...these are two signs of major progress.

What I do have is...HOPE.


Hope that I am doing the best job as a stand in pancreas.

Hope that I can keep my girls diabetes "under control" enough to keep them healthy enough to receive a cure.

Hope that scientists/doctors and investors keep looking for the cure.

Hope that we find a cure.

As desperate as we all want a cure we must be patient. We must not try every crazy cure idea. The best cure will come...patience and hope my friends.

Apr 6, 2013

Day 6 #HAWMC...Letters

Dear (100 year old...I'm being optomistic!) Jen,

I'm not a big fan of looking into the future as I like to let things just play out but I'm curious to know if I will see a cure for diabetes in my life time. And if not...at least please tell me advancements have been made so that my girls will at least have lived with minimal complications...NO complications would be even better!

A decline in the number of diagnosis would be music to my ears...that diabetes hasn't touched my grandkid's or great grandkid's generation. That scientists were able to discover the trigger, be it environmental or whatever, and stop it in its tracks.

I hope that I remember how passionate I was about raising awareness, fighting diabetes and never giving up...even after all those sleepless nights of checking low/high blood sugars. I wonder...please tell me...I do catch up on my sleep, right?! I hope my kids know how much I love them and even though I may have been nagging and talking incessantly about diabetes that I did it for them. I did it for everyone. I did it for you. Maybe they turned my nagging into nagging of their own...advocating for rights, injustices, diabetes or their own kids.

I know that the love you have for your family only gets deeper with age. I'm sure there are still battles that have to be fought but you've got in you...you got this. Just be sure to strap on some kicking BLUE heels (a sensible height...you are 100 you know) and keep going!


All the best the future may hold.
Love,
Me

Apr 5, 2013

Day 5 of the #HAWMC: Aspiration

Today our challenge is "if you could do anything as a Health Activist...", what's your biggest goal with no money, time or physical limitations.

A cure.

Of course it would be to get every scientist/doctor/pharma/investor together and say...CURE DIABETES!!

However, in the mean time...


I'd hold a world wide summit with every doctor/nurses/pharma/"Dr" Oz/Biggest Loser producers/any well meaning idiot that has spoken some mistruth about diabetes and make them take a diabetes class. I would set them down and set them straight. I would educate them. I would have every misconception about BOTH types of diabetes wiped out during this summit.

These professionals would leave knowing the differences in types. To not refer to diabetes as a general type or a one size fits all. For our Doctor's or Nurse's to not ask us at every well/sick appointment if our diabetes is "controlled". To not chastise the care giver for our diabetic having an less than stellar A1C.  For the professionals to listen to the diabetic or the care giver seeing as how we know diabetes better than they do. To give us kudos for being the best stand in pancreas we can be withOUT a degree. For magazine companies to stop advertising how you can reverse diabetes or cure it. To stop all the "this is what you should, would, could do" and just do it...advance technology so there is better accuracy in blood sugar readings, better calibrations with CGM's and smarter insulin pumps so that when the cure comes ALL diabetics are healthy enough to receive a cure.

Thank goodness there is no time or money limitations to this challenge as I'm sure there are some pretty thick headed people out there...the world wide summit may last for days...or months!

Apr 4, 2013

Day 4 #HAWMC Care Page

Hearing "you/your child has diabetes" is one of the worst sentences you'll ever hear. I know you are shaking your head in agreement. We've been there. We remember the day of diagnosis like it was yesterday. Shoot...I even remember what I was wearing! It's been almost 8 years since my first daughter was diagnosed. There was no Facebook, Twitter or DOC that I knew of to find others. So, where do you go?Today's posts challenges us to create a Care Page (really no challenge...as I'm sure I'm going to need to limit myself so it's not a Care Book!!) 

The first place I went was JDRF. In fact I called their local office the second day in the hospital to request a Bag of Hope and received a call from my mentor the day we arrived home from our week stay in the hospital. I truly believed her attitude set me up to be to have a positive outlook about diabetes and living. From then on I've helped out at the JDRF office in some capacity. For me, I feel like JDRF is extended family. They have been there for me since the first diagnosis and they were there for me with the second diagnosis.  I could keep spewing my love for JDRF but I'll stop and just advise you to find your local chapter and have them connect you to a mentor. Finding another family, child, or young adult in the same situation who just "gets it" makes all the difference in the world! 

The second place I went was the American Diabetes Association. Here in the Cincinnati, Ohio area, the ADA holds the diabetes camps. I signed both the girls up as soon as I could. I knew that camp would be a place they would feel "normal". Nora was 5 when she went to her first camp and it empowered her with her care each year. She went from syringes to insulin pens and injecting herself (with adult assistance, of course) to wanting an insulin pump. It was fantastic! She was able to come to us and say, "hey! I'm ready to try this!" Then I signed up Evelyn literally the month after she was diagnosed. I forced her to go knowing how great an experience it was for Nora. It may have been too soon. She was old enough to be a counselor and was in charge of 13 nine year old girls...I think she stressed out a day or two but in the end she loved it and is going as a counselor again this year. 

Local Support Groups...yes, I know, many don't like the term "support" but honestly that's exactly  what it is...support! Finding other families and kids living the D life. However, if that's not your type of thing...you can always find a TON of support groups on Facebook. If you type in diabetes in the search bar all the diabetes groups will pop up as options. Pick and choose or choose them all!! Nothing like being able to vent about diabetes at 3am to a group that is up doing the same thing! 

Of course, the Blue Heel Society, (shameless plug...I know!). We have a great team of 3 caregivers to T1D's of different ages and an adult T1D. We have different perspectives that merge together and create a wonderful place to listen, vent, learn and find your voice to advocate and wear blue shoes!! What better way to talk about diabetes when someone sees your awesome blue shoes, comments and then you unleash a flow of diabetes facts and who you wear them for...it works! 

I try and follow a couple other blogs too. Hallie writes the Princess and the Pump and talks about life with her T1D daughter. The other is Meri at Our Diabetic Life. She has three of four boys with T1D. Meri was the one I reached out to after our second daughter was diagnosed. Both ladies write so beautifully and I just "get" them and each of their posts. There are sooo many wonderful diabetic blogs that I know I haven't scratched the surface. 

I haven't forgotten about the Type 2 diabetics!! I like to follow the Angry Type 2 Diabetic also. Lizmari isn't really angry...well...she is with diabetes!! I like to follow her because she has taught me so much about Type 2 diabetes. I'm ashamed to admit it but I had the common misconception about Type 2 diabetics but through her blog posts and her Facebook page I now know that there are just as many misconceptions about Type 2 as there are about Type 1. Lizmari is a smart, sassy, tell-it-like-it-is lady who advocates for all types of diabetics and educates the masses about Type 2. 

I do want to acknowledge that being newly diagnosed is overwhelming...more like life changing and that submerging yourself in the D life may not be for you. I will tell you even if you find that one person going through the same things, to be able to vent to them, will make such a difference. For me getting involved  gives me a feeling of actually kicking D's butt. That's just me. Just because your not heading a Facebook page  or writing a blog, or volunteering at diabetes events doesn't mean your not doing anything. Taking care of and advocating for YOUR T1D speaks volumes! 

Apr 3, 2013

Day 3 #HAWMC

Wordless Wednesday...


This is just for one of my diabetics...hasn't been in range all vacation :/

Apr 2, 2013

Day 2 of #HAWMC: Sharing

Today's challenge is about sharing. The Diabetes Online Community, or the DOC, will share everything there is to share about diabetes. For as much as we hate this blasted disease we are more than "happy" to tell our stories, share our great ideas and talk about diabetes. Just ask my kids..."Mooommm!! That's all you EVER talk about!!" For this post, however, it's sharing links to our old posts that would help newly diagnosed diabetics. So I'll share our links and/or helpful phrases because...well....that's all I ever talk about!!

Helpful things for the newly diagnosed:

1.
Yes, I know...hard to believe, and I would NOT have believed it myself when my first daughter was diagnosed. By the second daughter's diagnosis...I know this to be true! 

2. Sleep as you know it will cease to exist. Remember having a new born baby in the house? That's a piece of cake compared to the sleepless nights of D-rents (that's Diabetes Parents for those who don't know the lingo).

3. Diabetes is NOT an exact science...don't let anyone tell you differently. They main thing to remember here is don't give up!! Take each day blood sugar number by blood sugar number. Treat, bolus, whatever you need to do but move on. Giving up isn't an option anyway...diabetes will still be there. 

4. Diabetes isn't all rainbows and unicorns. Diabetes isn't all doom and gloom but I will share with you one of our most read blog posts to date. It is a post that no one likes to talk about but everyone sure does get. It's Diabetes: the ugly side. 


I could go on but I'll stop here as I think this would overwhelm any newly diagnosed diabetic or caregiver. Just know that YOU are not alone.




Apr 1, 2013

Getting Started...day 1 #HAWMC 2013




We have decided to once again participate in WEGO Health's Activitist Writers Monthly Challenge or #HAWMC. We enjoy writing during these challenges as it is fun, makes us think, gives us ideas to write about and most of all can be, well...challenging. Today's prompt is:

Getting Started...why do you write and/or why write for HAWMC. Those of you who have followed us here at BHS know that we write for ourselves, our loved ones, the caregivers, the T1D's...YOU! I know, speaking for myself, I like to write because I need to get something off my chest. Or I'm having a rough day and need to find some inspiration or motivation. Or I simply need to "talk" to someone. Plus I just feel better typing all my random thoughts and feelings and weaving them into a blog post. It feels good.

As for why HAWMC...I've already told you up above. We hope you enjoy our month long blogging. We hope that you find inspiration, motivation, something new or an "I get it" this month from our posts. So sit back and enjoy!