Thursday, August 21, 2014

3 ways you become unpopular in the DAD industry...

There are 3 easy ways to get yourself "unliked" in the DAD world. These points below can lean toward being positive and/or negative.
    1. Say something bold
    Each person has their unique personality, some bolder than others. Sometimes a bold person can come across like a bully; so outspoken and blatant, that other personalities fear to disagree or challenge their statements. Usually that bold person is just a confident extrovert; unless their FB timeline is filled with vague "hater posts." Then Houston, you do have a problem...How such a person handles an open challenge is true to the heart of their being.
          2. Go against what seems popular
    If you go decide to take the road less taken, or carve your own path, that can seem threatening and/or competitive to some. You may be considered ignorant and/or incapable. In contrast, you may create a cheering squad and fan clan. Go you. Be your own boss, but stay humble, please. Keep an open mind to listen and learn from experienced sources. Even if you don't fully agree. Ears and eyes benefit from staying open.
          2b. Cult mentality "It's my way or the highway" Lines are drawn, camaraderie ends.
           3. Slander someone 
    Through the process of discovering "our way" of getting a DAD, I probably did all 3 of these points along the way. Mostly in private, because I knew to keep my cool in "public". Slander is damaging and influencing. Because our family chose to withdraw all of our funds from a DAD organization, slander came OUR way. Despite my feelings, I did not publicly return the favor by name-calling and "out-ing" via social media.
    Difficult people are in our lives; and you are someone's difficult person. It's ok, we all are. I certainly am. What is perspective without some difficult person chiming in? It's not reality to surround yourself with just friends who hang on your every opinion coz they think you are so much alike...You may not agree on politics or religion, but you can learn from difficult people about DADs, if gracious enough to listen.
    Dangerous people are not welcome in our lives. Boundaries need to be in place & they must go.
The truth of the ugly is that service dog ownership is fought for in court, and trainers (even with good reason) have been known to "take back" DADs that do not perform their job properly... Anything goes because this is an unregulated industry. So be smart in your journey. Survival tips HERE

If you listen carefully, there's really only one voice that matters. It's yours. What are you saying? Is it lifting up the industry or tearing it down? Do you know FIRST HAND of what you speak and share? Are you open to 
  1. Being bold with grace and taking responsibility when wrong
  2. Keeping it classy when you pave your own road 
  3. Watching what you vague-book, and to whom you share personal details with...
  4. Kindly managing your difficult people, while eliminating the dangerous ones?
In the US alone, type 1's are merely 8.3% of the population. I would imagine just about 1% of us have diabetic alert dogs.  We are going to find one another. We will network and come across each other more often than not. 
                Try to not burn any bridges- you never know who you may learn from in the process!

Monday, August 18, 2014

Why ALS deserves its day= stop comparing it to Type 1 funding ideas

EVERY 90 min someone dies of ALS, (Lou Gehrig's Disease).

Dave and 3/4 of their kids back when I knew them
This disease came into my life by name after my son was diagnosed with Type 1 diabetes. It was taking the life of my longtime D.C. friend's dad. The Gillam family were my second family for a time in my life. We shared a cabin, and played endlessly together since we lived 2 houses away from one another. I had dinners and sleepovers alongside the kids. Their dad, Dave, was another father to me; which meant he tolerated my presence, fed me when hungry, and had embarrassing stories to black mail me with later in life.

Dave's wife and my mom are best friends from over 36 years now. Lib came to visit my folks these past years in CA, and I'd hear about the mystery taking Dave's life that went undiagnosed until just over a year before he passed.

Lib and my childhood neighbor and friend, Sara
His oldest and only daughter was married this past summer, to which I happily attended. There was not a dry eye in the house anytime Dave was mentioned. It was a beautiful day and tribute to a loving man and incredible father.

This bucket challenge has affected our nation, gone viral in social media, and has some putting the letters "A, L, & S" together for the first time.

What was my first instinct alongside many of you? The obvious: "What about _____" (fill in the cause you care about, the illness you seek cured).
Another instinctual thought, "Can we do this for diabetes?"

The Logic: Type 1 diabetes took my best friends life from her, it almost took my son's life...
Then I recalled a very SIMPLE concept explained yesterday to my young son.
A neighbor of elementary school age shared that he got a cup with his name on it and was very excited about it. Instead of sharing in his joy, my son exclaimed, "I just got one, too!" (which happens to be true).
My husband simply explained, "Share in your friend's joy and excitement for his new things, don't 'one up' him about it. It seems like you missed the point of why they told you in the first place; which was to SHARE it with you."

The reality: We should rejoice with ALS having "its day".  This disease has had little to no exposure, and has not been researched like many other diseases. There is no taste in "me too-ing" the challenge gone viral. Bad form in copy-cat-ing. (In my humble opinion).

Dave and his oldest son, Michael, (from picture above)
with Michael's girlfriend, Stephanie.
More reality: (please view video HERE of former NFL Saint/ALS sufferer Steve Gleason doing it nude. (Don't worry, it's G-rated, parents)!

The man who began the challenge, Corey Griffin, unfortunately died this past week. He was on a mission to raise awareness for his friend. "Griffin was a friend of Pete Frates, the former Boston College baseball player with ALS who is credited with inspiring the ice bucket challenge. So far it's raised more than $11 million."
(from article link HEREPlease consider this for a moment when wanting to fundraise for a cure:

  • Have you set the example and donated yourself?
  • Are your friends and family aware of your cause?
  • Have you EVER partnered with the organization of choice to find the cure?

If so, you are less than 10% of Type 1 people.  (We are only 8.3% of the US population).
Let that sink in.

Two ladies I "social media stalk" (because they are experienced & wise), and have shared their perspective which is very similar to my own. They are the power couple of the DOC (diabetic online community), good friends miles apart, and when you read on you will see:
Moira McCarthy, author of "Raising Teens with Diabetes", who recently funded $28k of the 1.2million raised in the Ride to Cure for JDRF says," Why not do what I did 17 years ago and

  • do research on what you are passionate about
  • find an org that supports it then...
  • join up with their events and raise donations and awareness."

Makes sense and a bit....unachievable, you say? I'd see her encouragement as "reaching for the stars," except I have had some success with fundraising recently. With no guide or trend to copy-cat, I did what I had done 22 yrs ago to raise money for a Guatemala mission trip. I sent snail mail. My dad helped me; he has been the fundraising coordinator for major non-profits. He gave me the "secret formula" again when we needed $15k for a service dog, and it worked. In 5 months we had all the money asked for. It was unbelievable, and I cried in gratitude every day we got a response card. Read more HERE on how to do this, too. I did not "crowd fund" or get a news team to feature our story, I merely asked those (not even immediately) within our family and friends circle. And it happened.

It took a few years to "come down" from all the work it took to find our way in the diabetic alert dog industry. By the time it settled, the family of my best friend (who died from T1 complications) and I decided last min to team up for a walk for the CURE (diabetes). We invited everyone we knew and literally had step by step ideas and guiding on HOW to raise money form the website once we registered. I did it every way but the way I had for our dog. Can't even say we got much more than $600 in the few weeks we "went at it" because we did not do it the same way. The yogurt shop that offered a dollar sneaker to put on their wall raised $50 from the community. The shop owner, donated $200 because we have known her for many years (and we didn't even ask)!

It's our relationship to people that makes things "happen"
Do your friends know your passion for awareness and to CURE?
If they don't; start there. Get moving on speaking up. SHARE IT. 
L-R Jonathan, Michael (me) and Mark. the brothers
I never had...
I know about ALS because of the Gillam family. I cried with, and hugged these boys just a few months ago; and now I am elated to share in their victory for ALS awareness and research. I haven't personally gotten the bucket challenge, but I don't need to. I just need a link to know where to donate. Do I need to be asked? Not at all, because there is so much hype on it.

Type 1 needs HYPE, and we are the only ones to generate it. November 14 is World Diabetes Day and we have a choice.
We can unintentionally sound like my 9yr old son, (from the cup story), or we can start the awareness where it deserves to be noticed; where it makes the most sense. 
What's the plan of action? Who knows. It's been suggested by Moira's better half, (insert friend humor), Michelle Weisenberg, " Maybe just post "hope" on our hands and ask others to do the same? But not call it a 'challenge'".
I personally agree and every year I have changed my profile picture to that hand picture and asked my kid's school to wear blue (since they do PINK so well in OCT). I have yet to find success in that request, but I'm gonna keep on doing it until it WORKS!

What say you? Join HERE  to further the discussion: Talk it out in this group of T1 parents and advocates...

Tuesday, August 12, 2014

How my son's DOG warned me of my own diabetes

I had been diagnosed with hypoglycemia for just over a year now. Given my own meter, etc. and let me tell you, I GET why my son eats us out of house and home when his blood sugar is low!
(Skip this red part if you are savvy)
  • FOOD & SUGAR are the ingredients that solve low blood sugar episodes. When under 70, a diabetic (or anyone, for that matter) need a combination of sugar and then food (good protein/carb ratio) to steady out from dropping again. Sugar bombs don't solve it alone, but they help keep BS (blood sugar) up.
  • When a diabetic is HIGH (like over 150) they must take insulin to help bring them back DOWN into a safe 80/90-120/150 range. That is what an INULIN PUMP does; it gives artificial insulin hourly into the blood stream to release blood sugar, because the tiny part of the pancreas that did that naturally is out of business, no more insulin.
  • Pumps deliver insulin, and some, with another added sensor piece under the skin, can tell one's blood sugar range at any moment. (This is a CGM- Constant Glucose Monitor). These need to be calibrated by one actually pricking their finger and drawing blood. This is done with a METER, and this METER is also used frequently throughout the day for diabetics (with & without CGM's) of all types (1, 2 and hypoglycemics).
  • Exercise naturally lowers blood sugar levels.
I am an over-protective, anxiety ridden basket case over my son's blood sugar levels. I'm in recovery, but still wear the badge. One night, as I went in to check his range (as he slept), his diabetic alert dog pawed me. Flint  kept pawing me. My son was fine. 117 to be exact. I thought to humor the dog and myself by checking my own level, and I was 58. 

Over the next few weekends of taking our DAD (in training) places, he would again let me know I was low. In the car, during my son's rugby practice...and a few times I'd "sugar up" to raise it but forget to eat and he'd paw me 20min later and I'd be back down to 70.

I am used to feeling crappy and out of sorts. I have Fibromyalgia, Chronic Fatigue Syndrome, Lupus, migraines, and my pituitary sac is flat in my brain stem, (Empty Sella); so I see my own Endocrinologist. I have been for years now, and so these consistent alerts began alarming me.
Then I got fat. Like instant fat. 
I had been steadily gaining, but credited it to my lack of exercise, energy, and need to eat small portions constantly to help from dropping from hypoglycemia. Yet within 10 days before flying back East for a wedding, I gained 14 pounds. And trust me, I was watching it. I had a lot of old friends to see! So I figured something was up and visited my Endo upon getting back in town.

The doc found was over-producing insulin and cortisone. What did that mean, exactly? Well his first idea was it could be a tumor (since my pituitary sac is already compromised). I cleared that test, (whew) and see my OB to rule out polycystic ovarian syndrome this week. (update: CLEAR) Now it's been solved on his end that I am "insulin resistant" and in the very early stages of PRE-DIABETES.

Say WHAT?! EFF me. EFF that. EFF. I will NOT do the "fat man's" diabeetus! (I know, not so nice, but that's the point of this blog).
Me at the biggest, then after 6 weeks of eating low glycemic diet

My dad & his brother both had been diagnosed with type 2 years before my son got his Type 1. I knew of them taking pills but being able to "reverse it" via diet and exercise. My dad and uncle (former football players) both did exactly this. We bonded over A1C numbers (that's when a test tells the blood sugar average over a 3month period), and I was very happy for their continued success. They are big guys; tall, strong, broad shoulders and big hearts. I never have, nor will see, "fat" when I picture them. But I knew it for myself. Last time I was this large I had my final baby ready to deliver.

So I cut out sugar and carbs and got on a low glycemic diet. I took this VERY seriously coz I know my son's life, and it is NOT easy; counting carbs for everything, checking his BS multiple times throughout the day.... Forget diet, diabetes is a life-style. 

I learned the OVER-PRODUCTION of insulin MAKES one fat and KEEPS one FAT. So this big body I now waddle around in is making so much it'll eventually exhaust itself from over-production, not make enough, and my blood sugar will SOAR. (go high)
Right now my blood sugar and A1C are aces. Gold Stars! But my lows are from the over-production and how I'm eating. It's a vicious cycle. So I have to be smart and am grateful to at least know there is something "fixable" in my life!

I do NOT have this because I suddenly ate myself or lazied myself into it. I got this from genetics, and we caught it early enough to DO SOMETHING ABOUT IT.
Type 2 Diabetes is genetic. I have friends heavier than myself, the same age, and not struggling with this issue. My Type 1 diabetic son has heavy friends who are not Type 1 OR 2.

  • You CAUSED this.
  • You could have AVOIDED THIS
  • You need to EXERCISE
  • LOSE weight
  • This is YOUR FAULT
Who gets these stereotypes? EVERY type. 
Is it fair? 

Fair enough to tell me "watch what you eat and get off your @$$ a bit more."
NOT FAIR to tell my Type 1 diabetic son. He needs to eat well and exercise, of course. Don't we all? 
You think this possesses any CONTROL or VARIABLE over his condition? You are WRONG.

We don't do fried or fast food, and I hardly ever finish a soda. I even was Gluten Free for 2yrs to boost my immune system. I always thought I should eat as mindful as my son does. Well now it's even more than him, coz he can have carbs, he can have sugar, he can eat a cookie! I can't. 
My son takes insulin to cover what he is ingesting. He can have a burger and bun, I will go "protein style."

Does this make sense? I hope my journey has enlightened this whole prejudice and unawareness of some differences between type 1 and type 2.

I still have much more to learn, I have 3 months of metformin (Update: didn't take afterall, made me way too sick), and yet WITH dietary changes ALONE my range (should be 3-11) went from 18 (too high!) to 6! 

I will beat this and "reverse" all I can, my son cannot. 
That is the bitter difference when Type 1 people hear about Type 2 things and associations. 

What say you?

Monday, August 11, 2014

You want a DAD? 4 simple points to consider.

This is a very good question. If you don't know the answer, please consider the following:

1. Who wants this more? That's who will be handling the dog more.

Helpful Links: Your DAD is only as good as you are
 DADs 101 & TOP 5 reasons DADs turn into expensive pets

2. Have you exhausted all other options?
  • Giving your life TIME to settle into the change this disease has brought
  • Considering a CGM (Constant Glucose Monitor)
  • Talking to a counselor regarding the fears and anxiety that you may have connected to this disease.
  • Teamwork. How much a partnership do you have with your significant other? Do you have support in this decision?

Helpful Link: How diabetes and DADs connect

3. Do you already like dogs and all that goes along with them? 
  • puppy bootcamp
  • continued training (older dog)
  • the fur/hair/grooming and vet costs associated with proper maintenance
  • pet insurance
  • cleaning up after, and caring for the dogs physical needs (exercise)
  • acclimating them to current household pets
Helpful Link: DADs are dogs, too 

4. Have you "done your research?"

I've explained in detail (above link) how painstaking this advice is. What do you consider a reliable source? A stranger from social media with awesome pictures? A testimonial found on a news clip? A group of parents who have "been there done that" and seem to "know it all?" 

Please be your own best investigator and be smart about it. Do what makes sense, and be mindful that your fundraising efforts + donated money DO NOT = successful DAD. You need a contract, you need extensive discussions and references. You should not feel "owned" by any DAD organization or trainer; and you should not feel any "one way is THE way." (cult mentality is never good-lol)

6 months of research is nothing. Consider spending at least a year on this big and expensive decision. You owe the next 10yrs of this dog's life at least 1% of your time making sure you do it the best way for YOUR family!

Still on board? Great. I have been told my blog info and education made a family choose NOT to get a DAD; and for that I am happy they took the time to consider all that is means. If you are "green light" ready to go, and not sure how to get started, here is How to Get a Dog. and HOW MUCH does a DAD cost...

ps- If you care to know WTH we chose this route, please LOOK HERE
~ Blessings on your journey!

Friday, July 25, 2014

Why my son won't go to diabetes camp

This blog subject is not here to start a war, or to offend...In fact, it's just being written up because this perspective exists, and I care to share it with you.

I'm a "flip-side" thinking mom that appreciates a good, honest and factual debate. My son is a teenager who happens to have Type 1 diabetes, and is intelligent, independent and...well...he expected me to write this down so I love him for knowing me in this way.

Sean (my son) has been introduced to everything I ever wanted since his diagnosis.
  1. A "mentor mom" (I lost her number, she called at a terrible time when I couldn't chat so there goes that).
  2. A D.A.D (diabetic alert dog) and holy hell that process has been no picnic, but we are on the right track now Follow HERE
  3. A medical ID bracelet he just got after 2.5yrs diagnosed (he actually likes and wears)
  4. A "coffee night support group" with parents and teens in our community via JDRF (Um, he refuses to go with, but his dad and I went when diagnosed and really appreciated the experience).
  5. A CGM (continuous glucose monitor); and I have LOST that war; it's not the hill to die on, so it's over. This also eliminates the excitement over the artificial pancreas because he refuses more needles/inserts...
  6. The PUMP. Only a year after diagnosed, having met another boy at a party with T1, was he convinced it would be ok (old school syringes were his preferred method until then).
  7. The D.O.C (diabetic online community). Which is MINE, ALL MINE. He hates Facebook, and yet knows his mama is straight addicted to networking and reading/commenting (because I am a free-lance writer). 
The 7th point right there ^^^ is my fav, and point of all this (if you are still following)... I don't involve him in the DOC because it is MY place to vent, read, learn, get lost in silly memes and find relief from all the stress of being a "caretaker." Sometimes I read something or see something so educational/funny, I share with my husband, or ask Sean about it...and recently this (what I initially thought hilarious) video surfaced. I was like, "Sean you gotta see this!" This ginger (we are a ginger family of 6) girl is making fun her experiences as a diabetic. It's comedic and clever. I appreciated it; Sean did not. He expressed his disapproval and that was that... so I thought. 

Tonight I entered Sean's room late to see if all was good as he has been running high late at night, and I want to square away his patterns (HA! you laughing?!) before he leaves for a Nike Elite Rugby training camp in a day. Sean went to correct his high number, noticed something on his pump, and asked, "Mom, can u do my site change (re-doing his pump insulin, etc) for me?"
UM, OK----KID MUST BE VULNERABLE. He has NEVER asked me this. I have changed maybe 3 sites in the past 6 months. (Shout out to all you parents who do it 24/7 for your young ones, xoxo).

As I got back to recalling how to do his medical equipment, Sean mentioned the video again remarking how he didn't know how people could find it so comedic to make fun of diabetes like that. I explained that sometimes comedy is a healing component...and then I fumbled up on his pump and reminded him, "I'm kinda messed up myself here (I have terrible auto-immune disease so I forget things easily, etc) and Sean cleverly said, "Now what if someone tried to make light of that." 
He captured my interest. I pried further and suddenly he was on a rant beyond belief!

He explained, "You know, it's like the girl in Monsters vs. Aliens who gets large, so they group her with monsters"... Kind of how the diabetic community just comes together, outside "the norm" of life.

I answered quickly, "It's comforting having a support system when you feel 'rare' and maybe even alone or misunderstood."
To which Sean went on to explain that "Ginormica" should have been placed right back into "normal humanity" as he put it, because it's what she wanted...

I saw where this was going and added, "You know how rare it is to be Type 1, let alone have a DAD coming alongside you...the support I've found is tight knit and special to me."

He answered, "But it feels like its own group, apart from whats normal, and I am normal I am NOT Sean "the type 1 diabetic" Booth. I am Sean Booth, and I want to be recognized as such.
This prompted me to ask, "Is this your problem with attending camps for diabetics?
He answered, "Kind of, I got a sneak preview to the place that one year, and didn't like the experience; but overall, I don't want a camp for diabetics, I want a camp. A regular camp."

A diabetes camp trip was point #8 actually, I just forgot to include it coz we had been to this very well-known California diabetes camp site in the mountains for a D.A.D conference 9 mo into diagnosis. We did not anticipate how poorly Sean does with altitude, and choose not to pay money for the mountains (again) overnight. We then found a white water rafting camp up further north in CA, but Sean hardly took interest after long.

Back to the conversation we were having, I mentioned how there are kids who keep their diabetes a secret; and he immediately responded about the mistake that can be. Sean explained how one's support system IS their friends. Not just one or two, but the whole group. He acknowledged, "If they don't all know this part of me, how can they help me? What if something happened to me? I need more than myself or one special friend, who may be absent that day, to call upon help if I need it."

I appreciated this so much and also asked him if he recalled making fun, (of doing blood sugar checks), by poking his finger & pretending the pencil he wrote with, caused him to bleed. He said, "It made it easier to share with those around me in class and make everyone comfortable with my needs."

Sean didn't quite get the connection I was trying to make by that recollection, because he still felt the harsh reminder of all the "downers" of diabetes. Videos, memes, humor,'s all a part of this disease he'd rather not focus on. Sean feels it sets him apart, and he doesn't want to be set apart.

When I realized that angle of his, I couldn't have been more proud. I was in awe of this kid, my CHILD/teen, to whom I had made his disease my own, making decisions and desires to better help who...him? No, me. The desires of my heart FOR him were to better help ME. This kid is doing awesome on his own. And if I ever refer to him as "Sean, my type 1....son blah blah" so help me god you have permission to slap me.

I define for clarity; I define for purpose and desire for his disease to be recognized and education exist alongside the awareness of it's components. But overall, I want a cure; because that would bring back "normal" which is, what seems, my son has already embraced.

This is his normal. He wants me to notice and respect the seriousness of it, but then treat him no differently. WOW. This kid taught me something good tonight.

I don't expect you to agree, understand, or fix our situation...Maybe in some sense you can identify with it? That's my D.O.C family...understanding. And I thank you for listening...

Love to you all,
Mom to an amazing son

Wednesday, June 18, 2014

D.A.D experience/survival 101

If you're reading this, I hope it's to help someone else who is struggling or seeking this possibility out for their family. A LOT of people have excellent DAD experiences, so please take this with a grain of salt!

This is an industry with a learning curve; and in which things change, as our experiences, knowledge and networking change and assist us.

  • Be a critic. You should be. There are too many scams out there. 
  • Listen, but don't own something unless you are one degree away from it. There are too many rumors!
  • Keep an open mind. One way is not THE WAY. Not in this industry.
  • Pictures say 1,000 words, for the moment they are taken, and from whatever perspective desires to be conveyed through them.
  • Think big picture. Tunnel vision has it's downfalls...
  • Stay open to feedback, but in the end, know your way and move ahead in it with confidence.
  • Keep your emotions in check. This is a life-threatening disease, so try to not hand over even a DOLLAR until  you see and sign a CONTRACT.
  • Don't be offended by the truth when you read or hear it.
  • Beware of the "D.A.D know it all's," -The ones who always have something to say...the ones who always refute what is said, the ones who have been burned, ripped off, "scammed"...
I only know that last one listed just now because I was one. I wanted to SHARE, educate, help with awareness. There's strength and a weakness in that... especially if I'm WRONG (sp? What's that word mean, exactly? -jk) 

Read from everyplace, but don't take any one perspective as gospel. Be smart, do what makes SENSE. 

How to not end up with an expensive pet click HERE
How do I avoid a scam? What is a scam, anyways? 

  • Your definition of a SCAM may be different than someone else's. 

    1. Your organization does not follow up training after giving you your dog... = "I got scammed."
    2. You did not receive a contract ever, never, no where. = "I got scammed."
    3. Through research you discover nothing really makes any dog trainer more "certified" than the next, and your DADs don't even require registration/certification, NOT EVEN THEIR VESTS!= "I got scammed."
    4. You thought getting a DAD was a certain thing, come to experience it's another... = "I got scammed."
    Let me reassure you, there are high functioning, quality organizations that have done ALL OF THE ABOVE, and continue producing DADs and happy clients. They are tooting their horn and have their happy clients singing their praises again and again all over social media.

    The above from article "you have permission to get scammed" click HERE.

    CONTRACT. If you didn't click the link above here it is again. You cannot control the outcome of your DAD experience through money. Giving money means NOTHING unless a contract that is signed by both parties states so. Otherwise, you are just an easy target for manipulative people. Getting smart after the fact doesn't accomplish much, so PROTECT yourself before you even begin. 

    Have patience. I know you want a cure, but a dog is added management, that poops and eats and needs attention. No where close to a cure. Life saving? Maybe. Be careful of your expectations. Dogs are reliable but they miss moments, they make mistakes; just like we do. D.AD.s are dogs, too.

    Above all, you must eventually be the dog trainer, as you will be the handler. Your DAD is only gonna be as good as you are.
    My best to you. Keep me posted in comments!

    Friday, June 13, 2014

    Our diabetic alert dog is like a psychic meter; definitely not his pancreas.

    If you expect a diabetic alert dog to be an organ, you're not getting it. I expect readers here to at least realize that much...a diabetic alert dog is a TOOL for your health, not a replacement.

    Most of us expect the technology to rule above all else (common sense)...even the dog.

    Dogs are reliable. They are sensitive, and alert-capable once trained. They WILL miss alerts, but over-all, I've come to find that the RIGHT dog, will not miss less than 85-95% of blood sugar out of range moments...

    In my humble opinion, I think that how we train these dogs, and what we are looking for, MATTERS.

    My son's trainer is married. Her partner is not diabetic, but suffers a pancreatic disorder that causes her to suffer low blood sugar moments; therefore, our D.A.D (diabetic alert dog) has "real time" moments in the home he is training at.

    The trainer and I had a significant conversation recently. It included the fact that most DAD trainers don't reward until under 80. Even dogs I/we know of that aren't "rewarded" until under 80, are clearly stir-crazy until...

    Diabetes doesn't "self-correct." So we must consider, in all logic, that since dogs are NOT truly hypoglycemic aware, and ONLY alert to the "x-factor", (thank you Debby Kay), that is within the rise and fall of normal range; THAT is where the reward should never fail and keep on!

    It wasn't until our fourth visit or so, that it hit me. My son's DAD alerted ME to a low B.S. (blood sugar) of 58. I am not diabetic, but I suffer hypoglycemia. I have a meter, just like my son. So I took my BS 5-6 times as if it were a pregnancy test; I couldn't believe it! One out of the 6 times I checked was completely messed up. It put me in range though I wasn't.

    Sometimes when my son tests significantly out of range, we have him test AGAIN. And I recently calibrated our son's meter (with liquid given with the technology to help it perform accurately).

    Overall, I believe his D.A.D is his "natural" meter. This little guy FLINT knows the FALL, not the number. He knows when Sean is going lower and declining, which is what matters to us.

    Sean can't play rugby under 130 and "Flint," his D.A.D, alerts under 100. Some of the best DAD's we've trained with and from other organizations, alert under the "100" number. There's something to it...

    How do you feel about all this? Comment below!

    Wednesday, March 19, 2014

    Open letter to USA Rugby 7's - & Matt Hawkins

    Jan 2012, just 2 weeks before diagnosed. With USA Eagles Cap Matt "Polar Bear" Hawkins (rt) and Nick Edwards (middle) and Garrett Bender (left)
    March 2014
    Dear Team,
    In August 2011, our thriving oldest son, Sean, was beginning his first season of American football. He trained 2hrs a night and lost some significant weight. He was thirsty every night before bed, and we attributed it to his 7-9pm practice. Early November, he complained of some vision problems, headaches and nausea. Thinking there may be a concussion from a practice hit, doctors ran a CAT scan and Sean ended up with an emergency appendectomy. Later that month, football ended, and we were introduced to our local rugby club that had just started up. My parents and our best friends in Wales and England are HUGE fans, so we joined and have never looked back! Sean continued losing weight, (23 lbs total), and by January of 2012 we were at the Olympic Training Center for that freezing downpour tournament that couldn't have been more fun! Sean hadn't suffered his asthma problems in years, but at that tournament, he pulled himself out of a second half saying he was having trouble breathing; which we assumed was an asthma flare up. He caught his breath and wanted back in and took a cleat to the neck that delayed him getting to his next game on time. Which was a blessing, because we ran into you! Our Temecula Lions Rugby Club made it to the semi-finals! We lost, but we gained the passion for the sport for seasons to come.
    The U10 Temecula Lions first visit to OTC
    (Sean is far back left with "peace" brother Bryan far right)

    Two weeks later, Sean looked really bad after his next game. He fell asleep right after, and was hard to wake up. He could not longer keep food down, even in small amounts. I took him to an Urgent Care doctor and said, "I know this sounds crazy, but here are all the weird symptoms these past months, and....I think he's dying."
    Sean was in bad shape. He was in organ failure (Diabetic Keto-Acidosis) and rushed to ICU for 2 days and spent the rest of the week in the hospital. There is a test that can tell the body over the past 90 days what its blood sugar average was. For a non-diabetic, it's under 5.6. For Sean, he was 14.5 and it was a real "Twighlight Zone" kind of week. What is type 1 diabetes? How did he get it? Will it go away...?

    1.5yrs after diagnosed, they met again-
    Sean on pump now and MUCH healthier!
    These were constant questions on our minds. We discovered Type 1 is an auto-immune disease that neither diet nor exercise caused or can cure him from suffering. He tested positive for it genetically, and auto-immune-wise; yet some environmental trigger (like a virus) caused it. It's forever. He will be on artificial insulin, to be pumped into his body by a needle or machine on an hourly basis, or he will die. It's life-support. The problem is, the very thing that helps Sean can harm him. The part of the pancreas that produces insulin naturally for non-diabetics, releases blood sugar in the body naturally, in the proper amount. For Sean, it's all calculations based on what he is eating; and if he is going to play rugby...And, well, going back to rugby was a whole new nightmare.

    By summer 7's, 2012, Sean's return to rugby got complicated. His blood sugar dropped consistently. School started in the fall, and he dropped and nearly collapsed on campus. We discovered PE was a danger NO MATTER how many carbs he had beforehand, after, etc. We also trouble-shot and found Sean drops during math (coz he's like insane math-savvy and does it all in his head). We made adjustments. His Endocrinologist wrote him out of PE and yet "not doing rugby" was not an option for Sean.

    Sean's youngest U10 brother (redhead in middle row)
     and sister, who played U8!

    The normal range for Sean is 90-150. If he is under 70 he may get weak, seize, pass out or die (at zero). If Sean is not at least 130+, he cannot play. Once he begins playing, his adrenaline from the aggression sends his blood sugar soaring into the high 200's to 300's. When diagnosed, Sean was over 600, we aren't sure how high, since the machine couldn't read it.
    Sean's brother and best friend, Bryan, also
     plays hooker and shares concern for Sean's
    health management on and off the field.
    Pictured with Eagles Manager
    and former prop Tom Wagner

    Temecula Rugby Club is our second family and was patient and accomodating during Sean's return to "normal," Once an ambulance came to a game; we had drama. Once at a practice, it came for someone else, and as I hurried from my car, parents shouted, "It's NOT Sean!" That was our first season back. We had to learn a LOT about being an athlete with Type 1 diabetes. Now he's doing GREAT. He's got a system for food, what to eat carb/protein-wise and how to quickly "carb up" with liquids like gatorade in order play, as he is a starting hooker. Sean's only challenges have been breaking bones easily. He's had over 11 boxer's fractures or finger's while playing, since being diagnosed. His Ortho now just puts him in a brace for a few weeks, as his pain tolerance is such that he won't tell me until AFTER a game is over that be broke something in the first half! 
    That's Sean; a fighter. A kid who won't let this disease dictate his dreams and goals. It is uncontrollable enough at times, it does not help to get viral infections, suffer any kind of injury, since blood sugar is connected to more than just food. It goes crazy with excitement, stress, anticipation, etc. It's something I am very proud to say that my (now) teen son manages beautifully.

    Sean has had two very frightening low in the past 2 years. It happened just days after we were back, full circle at the Olympic Training Center again this past weekend. He did not realize he got to 27 and we were told he may seize or pass out in the 20's or below. Sean carries an emergency glucagon (sugar) shot on his person, 24/7 just for this type of moment. He did not suffer in any major way as this occurred. In fact, he said he felt his adrenaline kick in (which he knows from playing). So he checked. Afterward, he complained of a headache and exhaustion.
    This past April, 2015, Sean collapsed in my arms and seized, then lay completely lifeless. This recovery took a lot longer but he is back to rugby this winter, even training with the pathway to High School All Americans; Eagle Impact Rugby Academy.

    The constant inspiration our whole family experiences with this sport is undeniable. Rugby has brought us all together more, and makes us support one another in more ways than we are used to. It's a nice break from the stress and management from daily/hourly diabetes awareness. When Sean plays, he is FREE. He is not connected to anything. No tubes, no concern on anything but the game and doing his best. It's a joy to watch him thrive again and we thank you for always being so gracious and remembering who he is when we run into one another. It's done wonders for his spirit. He hopes to make a mark on this world, and show others that he is able to follow his dream despite Type 1 Juvenile diabetes.

    Thank you Eagles, for being a soaring inspiration to Sean, and for checking on him and talking to him when we run into one another at rugby events.

    Booth-Rugger Clan
    Sean now into his 3rd season! He gets to take his pump off to play every game, and I think he loves that, honestly. And yes, he is beast.

    UPDATE! This summer at Serevi camp in Encinitas, CA Sean finally introduced his service dog to Matt

    Proud parents at Cal State games 2014

    2016 at Eagle Impact Rugby Academy training, Jan 31, on the 4th anniversary of his diagnosis, Sean is trained by Garrett Bender of the Eagles from very first picture above. And AGAIN, it was pouring rain! No pic available but here is Sean (U16) in his American Scrum cap.
    Kim Wassan Photo

    Wednesday, March 12, 2014

    DADs for Dummies takes a look in the mirror

    I have been writing for some time, without even owning a DAD. WHAT?! Oh yes. I speak of what I do not know...until now.

    From 2012 until now I hoped my writing efforts would allow the "noob" (newcomer in gamer terms) grasp the ideas surrounding what this whole things looks like, from a "getting committed" standpoint.

    I also wanted to find organizations outside ones we had experienced personally, because we had been with a well- known CA organization for nearly a year. Committed, fully funded. We then worked with a service dog organization that allowed our Type 1 teenager, Sean, to handle over a dozen of their dogs, learning valuable skills that would translate into his own experience someday.

    What is unique about our situation is that we have an adolescent who was diagnosed at 11; he went from a "kid" to a "mini-adult" within that first year of diagnosis. Because we lost our family's best friend a month later to Type 1 complications, we gave a lot of the responsibility back to Sean. He did his own shots before leaving the hospital, and has carried his bag of supplies, since. We know first hand what DKA, (diabetic keto-acidosis from high blood sugar levels), coma and death look like, so we wanted him to take as much appropriate responsibility for his own life.  

    This mentality translated into our son's DAD experience, too. Since Sean was told not to bond or get attached to any dogs with one org, (although we were around their dogs at various events), he did just that. The idea of a certain dog may have been nice, but since he had none, I'd guess there might have been a perceived "lack of interest" from Sean. The same perspective might have also carried over, regarding my level of desired participation. (These are just my humble opinions looking back). 

    We wanted this to be HIS dog, HIS desire, and HIS responsibility. We have reasonable expectations on our kids. We had them close together, and I am disabled myself, so there is a lot of personal responsibility in our home. We are the parents, 24/7, and are preparing our kids to fly from the nest someday. I had already done the math... Sean had 5 years until he would leave home. That's nothing. His disease management + DAD had to be off to a good start...

    The dog handling classes Sean took with our last organization were priceless. He/we were all given "Service Dog 101" knowledge. These are the words/commands to use- and why... It was eye-opening and we learned more in 5-6mo/2 nights a month than imagined. Now we really knew what this was going to look like.

    The key piece missing now was bond. Sean had not enjoyed the immense shedding from labradors. The level of hair to manage was new to us, since we have a Yorkie at home, and had a labradoodle at one time, as well. Sean and our labradoodle had an amazing bond. We (really me) thought a hypoallergenic DAD would be a great solution to this, and my "mommy-(thinks she)- knows-best, mentality got in the way of Sean's Journey. (Even tho when 11 he SAID had wanted a "fluffy" as he called it- he he).

    It all came to a stop when we realized our son really had no interested in a curly-haired poodle named Brulee. He was going on 14 within the year, already thinking ahead to High School, and picturing the rugby field with his team mates. Though this cutie pie dog was a definite chick-magnet and soon to be his, we decided it best to go back to the drawing board. There was too much at stake. Thousands of dollars (as much as a new vehicle), friends and family waiting on us...We had another "sit down" and realized our son needed the dog he was going to fall in love with. He needed to name it. He needed to choose it. He is his own man now, and this was his journey, after-all.

    Finally this month we are "Ready to Fly!" Our DAD has been home with us 2 weeks for bonding, and goes on to live with a professional DAD trainer soon. Just in these few weeks the bond between Sean and "Flint" is undeniable. We have all come alongside our son, assisting him when needed with Flint; but he is all over it this round. It may have been a long and dramatic road to travel to get us to "just a puppy" but it is what needed to happen for Sean, as this is all about him, and what was going to work best for our family.

    The Facebook "DAD world" is a wonderful place to network and find good advice. It is also a terrible place sometimes, and may be severely catty if/when you got a bulls-eye on your back. Now that we are finally "in the thick of it" I've promised to put the focus back on Sean and his dog. Coz I'm mom, afterall. I will miss what I perceived as being helpful to this community online, and apologize for my lack of a proper goodbye in some of my own groups. 

    I do love to share and write, so I have launched for those in our lives who have truly partnered in spirit with us. I will keep writing here, at times, so please "follow" this blog, or check in as often as you want! It's not about me, it's about you, it's about Sean... it's about our Type 1 community and these dogs. 

    Anna Booth
    (mom, wife, writer and homeschooler of the most amazing 4 gingers I know)
    Interested in a Diabetic Alert Dog? please check out this link on "How to Get a Dog"


    Thursday, February 20, 2014

    Diabetic Dog Lingo- what the what?

    If you're new to the scene, you've come to accept "DAD" means more than your father. It's an acronym you will begin writing A LOT.

    It took me forever to decode "smh" on Facebook. (shake my head). I think I had to ask, even. IMHO took less, but was a struggle...(in my humble opinion). Have you heard of the poor woman who thought "LOL" was "lot's of love" and when her friends mom died she POSTED "lol" as a comment? That ended that.

    Misunderstandings in language is too common. Even more-so in WRITING. It's there to look at. Permanently.

    If you're in support groups for Type 1 families you may see Dx'd = diagnosed. Or learned new terms like "Diaversary" = anniversary of diagnosis.

    I'm pretty sure via FB and our networking skills, we can change the face of language if we chose to.
    Except maybe in some cases:

    Well then, back to the "DAD" talk...
    • What is a SELF-TRAINED DAD?
    • What is a "FULLY TRAINED" one?
    • What does "finished" diabetic alert dog mean?
    • What's a MATURE dog?
    • "Started dogs?"
    It's whatever you define it as, (or however it's been defined for you).

    A self trained dog can mean you "wing it" solo, or you hire a professional to partner alongside you. Then would it be a "Professionally Guided Trained" dog...? Yea. That sounds good.

    A fully trained dog doesn't exist. At least that's what I said to a recent pal...but that was from the angle that a dog is not ever "fully trained"...between the maintenance and age most people get their DADs, I felt it an accurate assessment. If I got my DAD org friends on here to comment, they'd say different; and rightly so! Their year/s of dedication to these pups has brought their dogs to a "fully trained" place. 

    A finished DAD is a pipe dream, and I'm sick of hearing that term. This is the strongest opinion I carry. 
    It deceives families. It looks like the "easy way," and it's not. The year/s waiting is torturous, and your DAD will be PREPARED for you and the upkeep- not EVER "finished."

    A mature dog is like deciding when girls are old enough to baby sit. It may be your 13yr old, it may be your 17yr old. Not every dog matures at the same rate. Most "catch up" to one another around 4yrs...

    A started dog is a term that has been used when basic "puppy-hood" issues have resolved, and obedience work has begun... It's probably the most accurate term used!

    Where did these terms originate? In describing working retrievers- Career change dogs from the "gun dog" world come with these terms attached. Click here for 1961 Book by Wolters/Randolph

    I'm kinda hating here, aren't I? I don't mean to; language is a beautiful gift I hope to understand better!
    It's the COMMUNICATION and DEFINING of terms that bothers me. I wish that along your journey, when you hear words and things that you've NEVER heard before, you ask about them. "What does that look like? 
    When spending hundreds of thousands on a car or motorcycle, we hear "Car Facts" and read words that are new terms for those unfamiliar in the auto-industry... Those terms are explained to us. It should be the same for the diabetic alert dog industry...

    Sunday, February 16, 2014

    Curse of the invisible disease; how SD fakers benefit

    I'm sitting here writing this as my kids Netflix choice is "How JAWS changed the world." I'm thinking WOW, what an impact, as my husband reminds me, "No one looks at the beach the same way any longer."

    I wasn't allowed to see it as a kid. And I'm a Southern California beach brat. Now I know why I was able to windsurf, sail, and lifeguard with no fear. Then I got married to a man who grew up on the JAWS trilogy, and now all the "don't you worry about sharks?" comments I grew up around from inland friends, make sense.

    Sharks are obvious predators, and the damage they cause is undeniable and life-threatening. It's something we reckon.
    Could you imagine the same fear-induced awareness over Type 1 diabetes? 80 people a day are diagnosed with Type 1 diabetes. But no one sees it or fears it until it strikes them... The United States averages just 16 shark attacks each year and slightly less than one shark-attack fatality every two years. Meanwhile, in the coastal U.S. states alone, lightning strikes and kills more than 41 people each year. TYPE 1 beats out lightening and sharks. But it's invisible. Click here for shark source sited and more facts

    Was there any GAIN to the JAWS films? Yes, as I'm listening here, the film goes on to explain the boost in Marine Biology and study of sea life. A guy I know, works with dolphins who patrol the San Diego coastline and search for mines. What animals can do is fantastic, but you probably know already from visiting this blog on diabetic alert dogs (DADs). This film then also goes on to the disservice the film created.

    What did I know about "invisible disease" before Type 1 that is close enough to compare?'s in a class of its own. But my mom has lupus, and from 40-60 years old it was undiagnosed. Lupus is the sister-disease to Type 1 diabetes. She was not able to help easily with my kids when they were babies, and I'd frequently hear "I'm not doing so good." But I never understood it. Five or so years into it, I saw my mom on one of her bad days. I was lost seeing her pain, and barely recognized her. We always went for dinner once a month, when invited to her house; but now I realize it was when SHE could do it. My mom loves my family and always welcomes us. But I tell you, it wasn't until 30, as I struggled with my own diagnosis, that I truly "got it."  
    People would say, "You look good." Isn't that the determination of it looks? Sigh*

    I had many months in a wheelchair, and later a walker. I didn't drive for nearly one year. My central nervous system is damaged permanently. And tho I currently don't use "obvious tools" to assist me, I struggle with standing and walking. 

    Before I got sick, I was always curious why women, waiting in a significantly LONG bathroom line, felt at liberty to use the handicap stall. Inevitably, someone wheeling in would need it, and have to wait. 
    That really isn't fair, is it?
    (Are those who "walk in" wiith an invisible illness too? Chances are they just don't want to WAIT...)
    Service dog "fakers" are the same breed as handicap stall abusers. It's available, so take it. It's invisible, so use it. Type 1, Lupus, PTSD, etc. are all things that aren't as visibly obvious as having a wheelchair assistance or seeing eye dog. But the industry is unregulated. 

    There is no one to regulate who gets vests, who provides them, nor how dogs are "certified" (which isn't even necessary). I applaud groups that set standards for themselves. They will be first in line and recognized the day the United States government gets involved. 
    So let's do it! Yea? 
    It's not that easy. We do not have a solid answer on what diabetic alert dogs smell. It cannot be "bottled and sold." Read this Blog on research here.

    Until that happens, we got nothin'. Done and done. So what do we do in the meantime?
    We look at ADA which is federal law and provided by our government. ADA doesn't require anything more than a clean, well groomed and well behaved service dog (that is task-oriented to the need of it's handler).  No vest, no "license"; you must register your dog with the county, as you would your pet. That's it.

    The more we require of ourselves in obvious tools, the easier it is for fakers to copy. Can our dogs be just as invisible as our disease? I dare us to try.

    More resource links to ADA law and info on types of service dogs:
    Why do YOU need a service dog? How to answer a conflict...
    Top 3 types of service dogs you may see...
    DAD certification
    Is your DAD a "seeing eye" dog? (Yikes)