Double Agent

We have discussed "pumpcations" here , before. And because this is my blog, we are going to talk about them again..dang it.
I have been a pumper since 2004, before I met my hubs, the infamous "Dr. C". I loved my first insulin pump, an Animas IR1250, like pre-color screen and hugeness, Animas. It was silver and sleek and meant I didn't have to take shots anymore: suhhhhh-weeet.
I then transitioned over to a Medtronic Paradigm, and had met my true love in the pump world. The ease of use and having a back button were probably more exciting than they should have been.
Then marked my stent with Schmomni Plod, where I was told I MUST wear their product if I were to remain employed...you know, a totally legal request {insert sarcasm font}. Going tubeless WAS nice, having a tumor under my clothing, not so nice. Plus, at any given moment, a bad pod would awkwardly begin loudly beeping, and is only silenced by a hammer...or defusing it like a bomb, which easily breaks your nails. Rude.
About 2-3 years ago I began my annual pumpcations. A vacation from pumping, where I switch over to multiple daily injections {MDI} for a few weeks or months out of the year. It's so liberating. To not deal with pockets or clips or shoving it in my bra. Not having to worry about my site while getting bussaaaaayyy {yes, yes I just said it like that}...or worry about what my husband thinks of how it looks on my body. Not worrying about what others think about it, feeling stares when they catch site of my tubing or see me bolusing. Don't get me wrong, I'm the biggest pump proponent out there, especially for a Medtronic pump, but sometimes...I just need a break. And that's ok.
I take great care in explaining pumpcations to my patients. That they ARE ok, that they won't get in "trouble" for wanting to switch from time to time. We always have a back up plan for shots. We sit down and calculate the correct basal injection doses, adjust the carb ratio and correction factor, and review the fundamentals of MDI.
I found something surprising, though. People are even MORE apt to make comments about my diabetes management choices when I'm using insulin pens. "Aren't you supposed to be on a pump? Did it break? Why are you STILL on shots, I could NEVERRRR do that...." And so on. Geeze, people. Let me be pancreatically challenged on my own. Calling attention to my injection in a large group of people is awkward and uncomfortable. I will talk diabetes all day, any day {lets get real, that IS my day} but don't be a douche and point me out to the vast majority of folks that don't even notice me!!
I guess diabetes, especially type 1, is something new and unknown to most. Questions, comments, insensitive statements..the general public has no filter. I've seriously heard it all. If someone you knew was diagnosed with cancer, would you ever consider walking up to them and saying "oh! You have cancer?? So did my uncle..he lost his leg..and then died.", uhhhh no. So I wish more common sense was used in that regard.
It's ok to be different. Even if its a different different every week. If you need a break from pumping: take it. Discuss with your team, and take a pumpcation...but use common sense, and have a game plan. Make sure you have long acting insulin to replace your basal rate, syringes or pen needles, adjusted doses {you use about 20% more insulin on injections} and a plan.
And to you non-diabetics: we are people, with feelings, with a chronic disease...use caution when relating your anecdotes to us. We are very sorry your grandmother lost her life or limb, but that is not us. Do we look immobile and unhealthy? Yeah, well we probably won't ever be that way. Ye of little faith. I've had this disease for 2 decades, and I'm pretty darn healthy, diabetically speaking.
Ok..rant over, pumpcation: month 3, set to begin! I am looking forward to slapping on a T-Slim, since I have no current endorsement deals with Medtronic..hint, hint...but also, so I can report back to my public {see: you, lovely reader}.

PS. I have zero plans to censor THIS post...many took issue with my DAD post, and it is now so beyond edited, it is unicorns and bullshit and not me at all. So, I hope it at least informed a few of a growing treatment option. Because that is the LAST time I change who I am so as not to offend.

Who's your DADdy?

I recently accepted a {non-salary..volunteer} position as a clinical consultant with a dog breeder that also trains services animals, namely: Diabetes Alert Dogs. I help screen potential clients, and help them grasp who is, and is NOT, a good candidate for a dog. Oh your A1c was last done 2 years ago and was 13%? Ehhhhhhhhhh

For those of you not in the know, a diabetes alert dog is a service animal that has received 1,000+ hours of training to become a service/assistance dog that you're able to take everywhere, and is also trained to detect high and low blood glucoses in a handler. I've seen it happen, and it made me cry. Here is this sweet faced labrador that is telling someone that they need to check their sugar. it gives you goosebumps. What exactly are they smelling? We aren't quite certain. its not neccesarily the actual "sugar", its a shift in hormones that their super noses are able to pick up on (I wonder if they know I skipped my shower last night....). Its best done with a type 1 diabetic, as its somewhat a stunted occurance in type 2s...again, we aren't sure why. We are calling it "Factor X'...sounds like super CIA stuff, right? So any chemists out there that would like to do a study as to exactly WHAT these dogs are getting a whiff of, PLEASE, contact me ASAP.

For those of you with loved ones that suffer from severe hypoglycemia awareness, ya'll are the ones that can benefit the most from these pups. Being able to catch a downward swing long before its seizure time would be a blessing for anyone that has experieinced them in real life. They ain't fun. Seeing my husband seize, realizing I don't have glucagon in the house, and knowing I am at least 30 min away from an ambulance arriving at my house: NOT FUN, and the stuff that nightmares are made from. Imagine if that was your child? Well...I can't..I wouldn't want to. These dogs are beyond what we are even capable of knowing ourselves...and although they may have puppy breath, they will love you no matter what...even if you do look stupid trying to fit into your Spanx and fall over onto the floor. Not that I have ever done that. Ever.

These guys are service animals, they wear a vest, and can go anywhere with their handler. They begin socialization and training at age 4-6 weeks, and some have even been able to alert at the age of 9 weeks. Although, they are not ready to "go live" in a home until closer to 18 months of age. Training involves using saliva samples from a type 1 diabetic, placed in a vented tin that can be hidden anywhere on a person. The dog is then rewarded to recognize and paw (see: alert) when it smells this scent. And they use spit. To train a dog. I felt pretty dumb the first time I was 41 and standing in my kitchen shoving gauze in my mouth to collect a sample. Even stupider when I realized that my mouth was bright pink from the strawberry Jello I had just consumed.

Diabetes isn't sexy. I mean, I'm sexy..and have diabetes..that's different. Diabetes is work. Its a fulltime job on top of a full time life. So anything that is able to help someone live a life that's a little easier....why not??? Well, maybe the price tag. For the cost of a used vehicle, you can purchase a gently used DAD, fresh out of training...to the tune of $25,000.00. But unlike a car, it poops, pees and burps in your face. Dogs need constant care and love, and a DAD is no different. They are there to serve you, not sit in a crate all day long. Some DAD trainers are able to get grants or organize fund raisers to assist in the purchase of these animals. Some (not so nice) trainers sell you a 12 week old puppy that has been "scent imprinted" and youre given a booklet to train the animal. There are not so nice trainers that will assure you your dog has endured hours upon hours of training, only for you to get home with a spazoid dog with ADD that shizzles on your shoe. As in any market, scammers are here. So you best do your research, yo.
And as this growing industry gets rid of some its stretch marks, we will have set standards that dogs must meet to be called a DAD. You wouldn't want a seeing eye dog that only guided 30% of the time when it was distracted. Same with a DAD. We need genetically sound, healthy animals, and non-asshole, smart trainers, that are working towards the greater good of diabetes betterment.

Remember....The Alamo??

I am writing this post from Downtown San Antonio, Texas. Dr. C and I are here attending the annual Texas chapter of the American Association of Clinical Endocrinologists. No lie, we are probably the coolest people here...just don't tell the other nerds..ahem..doctors.
You are probably wondering about the title of my post. Actually very fitting! Funny story: we drove from our home in Southeast Texas (near Houston) to San Antonio, which is in Central Texas (see also: Hill Country). Following our arrival and check in to our hotel, I promptly discovered a packing mistake. I forgot to pack undies. Party FOUL. So yeah...I'm sans panties in San Antonio. That sounds a helluva lot cooler than "sleepless in Seattle".
My epic EPIC fail brings up a good point. Last weekend I was visiting friends and family in Austin (my hometown) and realized I had not packed extra pump supplies or insulin. And my pump (of effing course) started beeping "No Delivery" at bedtime. The wonderful folks at Medtronic offered to overnight me a new pump, and my local rep wanted to drive me a new pump...at midnight! Seriously, how great can a company get??? Love
my MDT-Minimed friends!! In lieu of those two options, I opted to test and inject every 2-3 hours with Novolog. It was super fun and practical...said no one..EVER.
I have always instructed my patients to calculate how many supplies they will need during a trip, and then DOUBLE that amount. Bring a travel letter, keep your insulin cool and have your pump settings written down somewhere (you would be surprised by how many people have zero clue).
So, I'm a big fan of the "do as I say, not as I do" rule...well, obviously because my brain isn't running on all pistons. Speak with your CDE or Endo regarding travel letters, a copy of settings and an action plan in case something goes awry.
I was flying to Boston out of Houston, and TSA pulled me aside and started pilfering through my bag. They weren't sold on my Schmomni Pod not being a weapon of mass destruction. They started ripping open pods, touching syringes and subsequently smashing my vial of Novolog. I was in tears. I began taking pictures of the TSA agents with my phone, which they told me was against the law (it's not). Their search cost me my flight and my pride. I then contacted ADA legal services, and said TSA agent ended up losing his job. Part of me felt bad, part of me felt vindicated. TSA itself says that insulin pump users have the right to request pat downs, and in fact, don't even have to disclose that they are wearing a pump or carrying supplies. I would like to teach incoming TSA agents that touching pumps, telling people it's "fiiine!" to put them through X-ray and to always trust that passengers know what's best for their health and $6,000 pancreases...pancrei..? Hmmmmm.
So..yeah, good talk everyone! I'm headed to the mall to buy some undies.

The wind beneath my wings....

My fellow 'betes bia, Cassie Giesberg, CDE is up to her shenanigans, again. She blew me away with this post she wrote on my behalf. I am so lucky for every single one of you and the endless support I have recieved from the diabetes community.
Yadda yadda yadda, sniffle, sniffle



An Open Letter…



To Whom It May Concern (insert interested party here):


Kelley Crumpler (Mrs. Crump, or “Crump”, as I like to call her) did not ask, goad, or threaten me at gunpoint to write this follow-up. I’m going to do it anyway, because I like Kelley and what she’s about, and I think she deserves to know she’s not alone here.

I “met” Crump after she “friended” me on Facebook a year or two ago. Since that time, I’ve come to know and really like the work that she does. In fact, I admire her for it. I admire her sticking out her tongue at diabetes every day, and saying, “eff you”, and letting others know that it’s okay to do that—as long as you get back on the horse and keep going after you’ve had your moment. I love that because she’s been a card-carrying member of the D-Club, she’s made a life effort into learning the science of diabetes and giving validity to the feelings that go along with having a chronic illness. And I love that she has never given up—even when it’s much easier to do so. She is passionate—a girl after my own heart. And she is not alone.

I, too, am very passionate about diabetes education—particularly with kids and their families. I firmly believe that education equals success. In my three years as a diabetes educator, I’ve seen countless kids and their families take a diagnosis that inspires fear, anger, and other negative emotions, and become empowered; these families are ready to “fight the good fight.” Likewise, I’ve seen kids who’ve given up on themselves—and everyone else has, too—and realize that they can do this. Not everyone is a success story, and I always knew that would be the case, but I definitely do think I gave these families something to think about.

I love being an educator. I love that feeling when I see the proverbial light bulb switch on, and people realize that they can be successful, but they’re also free to have their feelings about this condition—that those feelings are valid. I absolutely believe that with almost 30 years of personalT1 experience under my belt, I had a perspective that many educators don’t have the “advantage” of possessing—and that made me able to connect. Being an educator gave my life a lot of purpose; I realized that I could answer “Why me?” Because these families need someone who’s “been there, done that, bought the t-shirt, and lost it” and come out on the other side. I was happy to be that champion.

Unfortunately, even in the world of chronic conditions, there are politics. These politics are less concerned with education and its benefits, and more concerned with dollar signs. And when that happens, it’s not the providers, the administration, or even me that is directly affected: it’s the patients. This makes me furious.

In my own situation, I had been a devoted educator for almost three years. I don’t think that I, along with a few others, brought a new energy to an environment plentiful on low morale. I wanted to start support groups. I wanted to implement classes. I wanted to help people learn to take charge of their care so that when they entered the big, bad adult world, they would be prepared. I was shut down at almost every turn. It was one excuse after the other: “we don’t have the staff”, “we can’t do _______”, “we can’t bill for that.” The list goes on an on. The focus became such on turning a profit, that my life became a living hell. My health finally succumbed.

Long story short, I finally resigned. When I handed in my resignation, I was thanked for all my hard work, and asked to contact a local agency and let them know that I left of my own volition, “so we can have a working relationship”with said group. I did so with the knowledge that people aren’t stupid.

So I guess Kelley and I aren’t allowed to have any space to express our feelings—either about work or our own trials with diabetes or health issues. It’s not enough that we put in a workday dealing with diabetes, only to go home to deal with diabetes. I don’t say this is a self-pitying way, but only to put some perspective on the issue, and say how ludicrous it is that we can’t have our own space to vent in order to be healthy. What’s even worse is that people who have no idea what we do are more concerned with their own egos than what’s right for the people they serve. And there’s no amount of blood, sweat or tears that Kelley or I put in that can make up for the fact that those people are the ones who lose out in the end. My heart bleeds for them, a) because I feel like I failed them by giving up, and b) because I don’t know what they’re going to do for support.

For what it’s worth, Kelley, I support you. I’m proud to call you a colleague, and more importantly, a friend. I know you’ll keep finding ways to fight the good fight. If you need someone on your team, I’m here.


As you like to say, peace, love, 'betes,

Cassie

Sometimes, it ain't so sweet

Some of you may not know this, but this summer would have been my 6th year working at the camp I also attended as a kiddo, where I learned to give injections and that I could grow up and be "normal". Anyone that knows me knows my love for camp, and I speak of it often...to friends, patients and colleagues. 
So consider me flabbergasted to find out that said camp doesn't want me back this year. They don't want my expertise (there are usually only 1-2 diabetes educators, 1 Endo, and many MANY trainees that know NOTHING about type 1 or pumps) or experience. They don't want the relationships I have formed with campers or families, or the med staff volunteers I recruit. All because of this. My blog. My outlet. My huge branch into the diabetes world. They don't want parents associating me or my views with their camp.
I was heart broken, it was handled piss poor, and I'm also effing pissed. I speak for local clubs to recruit donations for said camp. I hang posters and fill out applications for campers to go. Shit...I had already allotted a percentage of my book deal as a donation for a new infirmary on camp grounds. So. Very. Sad. And the uneducated individuals responsible for these decisions have no idea about me. No one cared to give me explanations , no one went to bat for me, or cared to challenge these decisions, despite positions of power. My heart has a hole the size of Kerrville because of it, and I have truly learned who I can, and can't ever, trust.
The diabetes Gods look out for those who represent, though. Without my blog, I never would have met Cassie Giesberg or been invited to speak at Camp BlueBonnet, near Austin. It was love at first sight, and I can NOT wait to go back next summer to offer my services, expertise and donations. The sugar Gods smiled upon me when they sent me to Camp BlueBonnet!
This brings up another question. Those of us that blog, and dare to say the un-sayable, are we just sitting ducks? Waiting to get shat upon, just for our beliefs and vocabulary? When I worked for Company X (Schmomni Plod, for new readers) I was straight up told that if I posted 1 word on this blog, I could face instant termination and legal implications. WhatThaFructose. Just for preaching the good word?? That was one of the MANY reasons I left Company X, and haven't regretted my departure for one, single, Medtronic loving day.
Why do we put ourselves out here? These are my inner thoughts...these are things I implement in my practice...why do I share them with you? Because...it's the right thing to do, and if I can make one diabetic person laugh on a shitty sugar day, my job is done.
I truly love what I do, and do what I love. I will not quit until everyone knows my name, the true definition of type 1 diabetes, and until we are all walking around with new artificial pancreases, that are covered 100% by insurance. I won't quit until kids and adults stop receiving quack-ass diagnosis and treatment plans, and I definitely won't quit until everyone is an ambassador for their disease state. I want to advocate for those that can't, and educate for those who aren't as fortunate as I have been in the diabetes world.
Ok.
Good talk.
Now...go change someone's life..or recycle or something.

The one about my big toe....

I recently had to undergo a procedure, lovingly referred to as an "EGD", aka "upper GI" scope. Yep, my asshole maintains its status as "EXIT ONLY"...at least for now. I began having waves of stomach acid roll up into mouth at inopportune times, or I would have to, very emergently, puke. It was not cool. Between my Celiac and all of the crap I take for my RA, the Dr wanted to see what was going on and take some biopsies. Seriously? What ELSE. Part of me wanted to cry, part of me was glad she was pretty confidant that I was not dying of yet-to-be-determined disease state. Everything ended up being fine, I have severe esophagitis, a hiatal hernia and had developed an esophageal ring (to which my friends made comparsions to "cock rings"...I need new friends, obviously)...nothing a new, yeat ANOTHER pill couldn't fix.

As my IV was being inserted prior to my procedure, the RN made an observation. He asked why I was wiggling my big toe so anxiously. I had to stop my train of thought and actually look down to witness WTF he was actually referring to. I explained to him that, as a child, being diagnosed with type 1 diabetes, while learning to give myself injections, I had developed this "toe wag". It happens if I'm getting blood drawn, a shot, having an IV placed, BP checked...basically anything medical. Its my "wubbie", if you will. I don't scream, squirm or hold someone's hand tight...I just wag my big toe. Hmmmph..works for me.

Then it made me wonder if others with chronic diseases have developed odd coping mechanisms or nuances assosciated with their diseases. I feel like mine has become exaggerated as I keep adding to my collection of crap that's wrong with me. Not that I go around feeling sorry for myself. That's just no fun. Plus, I'm WAAAAY to heavily medicated for that. I just make fun of others and turn up my smart assedness when I'm feeling down, it usually makes others laugh, and it sure as hell makes me feel better about life. I often say this in my practice: "Sometimes you have to laugh, otherwise you're gunna cry"....and that's ok. In itself, humor and laughter is a type of coping mechanism.

I'm also dealing with a very VERY personal life decision I have recently had to make. So, instead of keeping it all in and being private, I'll blog about it. I have decided not to have anymore children, even though I would love to be pregnant and have another baby. It would just be too dangerous for both baby and me, and my luck, (because we have to do IVF) I would end up with triplet girls. Then ya'll would all have to send me diapers and formula, because I would be too poor from buying bows and ruffled leggings to keep my kid's butt's dry. So, yeah...it sucks...and I wish I could wag my toe until I felt better about this all, but it doesn't work that way. So feel free to send presents.

Hellions, Heathens & Hyperglycemia

In the last 2-3 weeks I have seen a rise in the number of visits I have had with non-compliant tweens and teens. What gives? Its like they are getting friskier with this warmer weather down in Texas. I've been meeting with their harrowed parents, so frustrated that they are pulling their own hair out while trying not to strangle their sweet children.

As a teenager I was BAD. You've seen me mention my A1c of 16% when I was 16, and getting fired by Dr. Pedi Endo for continued non-compliance. My parents didn't know what to do with my ass. I would go weeks without testing, make up sugars in my meter (yes, it can be done)and miss insulin doses all over the place. In High School I was on UltraLente and Humalog..you know, whenever I DID decide to inject. My endo would bring up pumps and I would laugh at him. I couldn't have given less of a shit about my diabetes. My reality was...friends, boys, drinking and my grades, those were my world. Now, had insulin gotten me drunk...I would have walked around wasted face....but with good blood sugars. I was always on some form of activity restriction or grounding with my parents. Limited computer access, no phone, no weekends with my friends = no bueno. And as I reflect back to that point in my life, I really don't know that anyone could have said anything to me to make me change my behavior. Not my Dad, teachers, Dr. Pedi Endo, and least of all, my mom.

Recently, Nurse Cassie did a post about disciplining kiddos with T1 that aren't taking care of their bidness. Many parents feel that a chronic disease is enough of a burden, and that being punished for not checking sugars, omitting insulin or lying about their diabetes, is wrong. Trust Cassie & I: IT'S NOT. Kiddos require close diabetes supervision at least until age 16, and at that time, a few more responsibilities can be handed over to the lad. As a parent, it is your job to prepare your child for adulthood, and that includes taking care of their body. So if your child was lying to you about money..or cleaning..or grades..you would impose punishment, so why NOT for diabetes self management???? Take away that smart phone, turn off texting, deactivate FaceBook or have them sit out from athletics or team sports. Diabetes is serious, ya'll! And allowing one's child to get away with murder will not help prepare them for the long run.

In the words of the great Joe-Slo (Joe Solowiejczyk, RN, MSW): "The message from parents to young people needs to be, “It’s going to be difficult. We, as your parents, understand that you have issues with managing your diabetes and that you don’t like doing it all the time. And, we’re going to insist that you do it anyway. After you’ve done it, we can discuss how you feel about it.”
I think had my family made it THEIR diabetes, and we talked about the level of suckage diabetes is, I would have been much more receptive. A kiddo needs to feel supported, loved and able to come to you with issues...but they must also trust that you will stick to your guns, and in the end, you ARE an authority figure, and if you don't follow MY diabetes rules you will LOSE you age appropriate priveleges.

Make your terms very black and white: You WILL test your glucose no less than 4 times daily, you WILL dose your insulin prior to all carb intake and in return, I will allow you to (insert super fun teen activity). Failing to hold up either end of the agreement, and you will both end up angry, frustrated and with a crappy A1c. Make your home a "No-Nag" zone for diabetes, only ask questions when pertinent to the safety of the child. Have a diabetes round table discussion once or twice a week, where Mom & Dad get to look over meter and/or pump and ask sugar realted questions. All nagging does is piss kids off (Wives, however, are ALWAYS allowed to nag FYI) and further push them away from the bigger picture. Make your kid an appointment with their CDE to discuss WHY they must test, keep their sugars at goal and dose insulin correctly. Let them vent. Being a teenager is sucky, add a chronic disease state on TOP of that = a cluster (insert "F" word).

Also want to give a shout out to Kendall & Jocalyn over at Kendall's Hope, my new favorite blog (I seriously was 30 min late calling my last patient backwhile trying to catch up on Jocalyn's posts!!).