Life sentence

Being diagnosed with a chronic disease can be devastating. Whether you're a toddler, tween, teen or almost adult, it can rock your world. Knowing the statistics. Listening to the news, the billions of dollars spent on others with your same disease state. Constantly being screened for potential complications and issues. Having your feet stripped down and examined by the Dr...I think it's just plain humiliating. I mean, sometimes I just can't make it to get a dang pedicure, mmmmk, doc!?

But what happens when you're faced with yet ANOTHER diagnosis. Another blood test that rocks your entire existence. Being told you must take yet another life saving medication just to function daily. Sometimes it's almost too much to bare. But wait...oh wait...life isn't finished with you. Your immune system is in a full on revolt, and launches a destructive war against yet one more bodily system. Why is this happening? Why did I get chosen to bare the burden of this auto-immune hell???

Truth is, once you're diagnosed with one autoimmune disease, you're very much predisposed to others. It's like a genetic lottery. Will your number be picked? And again? What about one more time? Disease grouping is common when we look at autoimmune diagnoses. Crappy part is, all of these disease states are relatively rare, and barely measure as a blip on the public health radar. There are multiple specialists associated with each diagnosis, which means more cash spent on copays, medications and treatments. T1 diabetes has brought most of us here, but how many of you also share your life with an additional AI disease? Rheumatoid Arthritis, Lupus, Hashimoto's Thyroiditis, Graves' Disease, Addison's, Vitiligo, Celiac Disease, Crohn's, Ulcerative Colitis....and these are just the more common.

I personally struggle with my hand basket of random autoimmune issues. Type 1 since the age of 9, Hashimoto's not long after the birth of my first son, Celiac Disease not too far behind that one, and the suckiest by FAR: a rare hybrid of Rheumatoid Arthritis and Ankylosing Spondylitis. I struggle with anti-inflammatories and immunosuppressants trying to treat the pain while also attempting to slow down the damage being done to my body. It ain't fun.

Some days are easier than others. But something as simple as a cold my kids brings home can send me to the hospital..where they want to shoot me full of steroids..which affects my 'betes. So, I feel like this delicate juggling act can disrupt with the tiniest of interferences. There are days I can barely get out of bed, or nights that I sleep for 12 hours straight. It has affected my ability to be the kind of mother to my sons that I wish I could be. That guilt then manifests into a crippling fear that I have passed along my crappy genes to these guys. Yeah he got my amazing dimples and winning personality, but will he also have to face these struggles and burdens as I have? It takes my breath away at times. The only thing that helps is to sneak my fingers to interlace with theirs while they sleep. And listen to their breathing, and know that I am not in control of these things, and all I can do is take this life one day at a time. The advances made in medicine over the last 20 years have been amazing, and I so look forward to what the future holds for me, my husband, my kick ass kids and my patients.

Know the signs and symptoms of other autoimmune disorders. Early detection and treatment is key, just like with T1. We, at the endo's office, routinely screen you for many of the common issues...you may not even realize it. And if you find yourself a sudden collector of suckage, much like myself, seek out the love and support of others! My life and health have been enriched by the thought and care of my husband, friends and family. They can't understand what I'm going through, but they sure know how to make me laugh and which foods make me poop my pants and which aggravate my joint pain. I am beyond a lucky girl.

This week I celebrate my 30th year on this planet, and I am enriched and humbled by all of you, so thank you for your kind words, support and accolades. Being here, now, is pretty damn awesome.

DiabLaziness

I was laying in bed several nights ago, and it struck me: "I am diabetically lazy". A shocking realization, it is not. An epiphany when examining those of us with chronic disease lazies after decades of just "dealing", YES.

It all started when my new Dexcom G4 Platinum {Yes, I IS fancy} required a finger stick for calibration. This would have required several actions on my part, including getting up to grab a new vial of test strips. It was then I decided my bed was just too comfy...my book just too enchanting...the soundness of my sensor, just not THAT important...So I did it. I calibrated my CGM with a MADE UP NUMBER of my choosing. GAAAASSSSSSPPPPP. I calibrated my sensor with a number close to what it was already reading, hoping it wasn't that far off from what my actual sugar was reading.
Now, why is this a BAD idea?? What if my sensor was WAY off? I could have just caused my sensor to continue to read "off", and thus miss any important shift changes in my sugar, rather that be low or high. This could have resulted in a missed "LOW" or "HIGH" alert, rendering my sensor useless. At the time, I seriously couldn't have cared less. But in retrospect: DiabeDUMB.

We have all been guilty of DiabeLaziness. Changing our lancets only when the clock falls back or springs forward, using a new pen needle or syringe only when it begins to bend into our skin from over-use, or simply skipping out on a fingerstick or insulin dose all together, what about injecting in the same area over and over? Using a pump site past 72 hours??. Do I condone this behavior?? Certainly not. Do I partake in these behaviors? DUH, I'm human. Remember the old addage "Do as I say, not as I do?", yes, precisely.

Will these things harm you? Possibly, and that is a risk we all take with our bodies. Re-using lancets sets us up for pain and infection, same with re-using needles for injection. I've had patients who have had a needle actually break off in their skin. What about re-using the same injection spots/pump site areas repeatedly: insulin is a growth hormone and will antagonize the growth of tissue, the technical term being lipohypertrophy. Lumps and bumps from over insulinizing a site can also prevent you from fully absorbing your insulin dose, the tissue becoming sponge like, sucking up the insulin and preventing your body from using to lower the sugar. And we ALL know skipping out on insulin doses is bad dog behavior: and will absolutely result in a higher A1c, which results in a grumpy Endo, which results in sad face immediately following said Endo appointment. I am reminded of the genius comedy website DogShaming.com. We need a DiabeticShaming dot com. Ok, so maybe not. As my patients would probably get pretty upset when I force them to wear their bad habits around their neck while I crack up and post their mugs on the site. Hmmm Ok, so probably a bad idea wrapped in pure awesomeness.

I know we are all guilty of SOME of these offenses. Some of the milder ones like putting a bloody finger in your mouth or not using an alcohol wipe before an injection. Overtime I think we learn what we are able to "get away" with, and which of these rules truly matter. There is scientific evidence that wearing your pump site past 72 hours decreases your ability to fully absorb your insulin...so...DON'T DO THAT! But if over time, not changing your lancet works for you AND you've weighed the risks involved, then be my guest. Balance your smarts with your dumbs, and all will be well with the world.

What are some of YOUR worst offenses???

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.