Dday: In the Next 15 years

In 15 years I've leaned that diet coke and sugar free gum (together) taste like stinky socks.

In 15 years I've learned to stand up for myself with every HCP I've met. Sorry, but I know more then you do.

In 15 years I've traveled to Hawaii, Canada,Denmark, England..with a few hours in Amsterdam to boot.

In 15 years I've dated three guys, married one guy, and celebrated wedding anniversary #6.

In 15 years I've given blood 43 times.(can't do it anymore,due to the magnesium issues)

In 15 years I've had between 80-100 magnesium infusions.

In 15 years I've passed out from lows 4x. My lowest low was under 10 mg/dl,and I've had a 12 & 19 as well. I've never had a number in the 20's but probably every other on the meter(30 on up to 600)...I've been there.

In 15 years the smell of Kendall alcohol swabs still smells like a flashback diagnosis.

In 15 years I've been to diabetes conferences & met many,many,many, good folks with diabetes.

In 15 years I've become very addicted to diet coke.

In 15 years I've gone from Regular/Lente/45 second meter to a Tandom insulin pump/Verio meter.

In 15 years I've gone through a successful pregnancy & have a very active almost 2 year old little boy.

In 15 years I've had 4 endocrinologists.(#4 for 6 years now)

In 15 years I've gone to two community colleges, became EMT-B certified,had a brief stint doing EMS, and failed out of the RN program at the end of the 3rd semester.(with only 1 to go)

In 15 years I've participated in 3 diabetes & driving studies, 3 Artificial Pancreas studies,1 " D & Vit. C" study & 1 injectable polypeptide study. None of them managed to kill me.

In 15 years I've rafted the Colorado, felt the cool mist of Niagara Falls, waded in the frigid North Sea & baked like a lobster in the glorious Hawaiian sun.

In 15 years I've had 7 surgeries.

In 15 years I've had two paying jobs,neither of which I liked.(daycare & sweatshop,take your pick)

In 15 years I've seen a former Prime Minister, a Queen, & a US President in person.

In 15 years I've learned that you can never have too many carbohydrates on your person.

In 15 years I've pricked my finger thousands of times, gone through my body weight in insulin(I'm sure) peed on strips and sticks and all sorts of things..injected sharp things into my body thousands of times,& resorted to eating Tums when there was nothing else available to treat the hypoglycemia.

In 15 years I've voted in three presidential elections and 10 state ones.

In 15 years I've owned 18 different meters.(yes,it's a bit of an obsession..I cannot say no to a free meter)

-------

In 15 years I want to travel to Europe, ride elephants in Asia, count Kangaroos in Australia, and go to an Olympics.

By 15 years..I want to have another baby.

In 15 more years I want to be cured.(or at least have an artificial pancreas)

In 15 years I want to have a nursing degree& specialise in pediatric pulmonology.

In 15 years I want to be healthy,more so then I am now..and free from D complications.

In 15 years I look forward to having all kinds of adventures with my family!( I want them to all be happy & healthy as well)

In 15 years I want to have my book published.

In 15 years I want to run a marathon.

And I want to meet more PWD...as well as stay in touch with the ones I know. Thank you for being there.

Bring on the next 15 years.

Posted with Blogsy

November Dayz

What if diabetes were more like Choose Your Own Adventure & less like "I've been doing this for a decade and a half & I am just plain TIRED of it?" Tired of the monotonous day in,day out,check sugar/low/high/crapcrapcrapness of it all? (With no sort of consistency,ever. I believe that's called stupidity.) If diabetes were more like Choose Your Own (Happy)Adventure, the hardest decision I would ever make would be between Spa Day & Turning Myself Into a Beach Bum Day. There would be no side trips to the land of frustrating pharmacies that never have my RX's in stock, no 4 am pump site failure bladder wake up calls, and no comments from people who think PWD will keel over dead if they consume sugar. Ahhhh, that would be the life. Diabetes Nirvana all around.

Unfortunately, I live in the real world. I've decided that I now loathe CVS pharmacy...(the rest of the store is actually ok)I always have to wait in line 20+ minutes to discover my auto filled RXs are out of stock, not covered,costs 4x as much, can't be filled this month(what the heck? I have filled these every month & nothing has changed) etc. Its not the employees fault so going postal hardly would help the situation. It's the crazy system they've got. I really need to switch to another pharmacy,it's gotten that bad.
(Just a day in the humdrum life of a PWD)

We are flying out again to California for Thanksgiving. I have got to work out a system for toddler containment, or things will be very, very bad. It's not the screaming that's the issue(gotta love sweet little old ladies who pat your arm & tell you that the poor things ears hurt,& that's why they cry,& they will soon go to sleep). No, that's not how it works. My toddler is perfectly capable of screaming/squirming/slugging his little 26 lb self for all but(brief nap) 30 minutes of the 6.5-7.5 flight to L.A. (I'd love to let them see this, but they oddly seem to dissapear into the black hole of the plane.)Kids don't like it when they can't run around & get kid energy out. (And nothing will amuse them, save pulling another passengers hair or throwing their toy to the opposite side of the plane.) Yes, he is 22 months old & 110% high energy & quite frankly, nothing works at that age & level of development. (Unless you've had one, please don't even pretend to know what this is like. I love my child, but he is very stubborn, & there's not a punishment on earth that can stop this kid from going bazooka.) Containment, & earplugs, are key to our survival on this trip.(I hope the car seat will fit in the seat) Not having to change a poopy diaper on the lavatory seat would be awesome as well.(yep,sometimes the planes don't even have changing tables!!)

Sent from my iPhone

Posted with Blogsy

The Tubing People

"Hey, is that an insulin pump?"

It is.

"I've been trying to get my dad to get one. How do you like it?"

It's great..really cuts down on my highs and lows.

"Where does the insulin go?"

In a hole, right there, see? You inject it into a changeable cartridge every few days.

"Well that's so cool! And thank you for shopping at Kmart!"

(Guy behind me looks mildly annoyed at the amount of time I've been there ringing up my purchases.)

Have a nice day!

-------------

The thing about being on a tubed pump versus the Omnipod is that you become a homing zone for every other pumper or relative of a PWD. (Or nosy instructor) It's not a bad thing, but you've got to be prepared to give a half way intelligent answer about why you are on a pump.

"Uh, I like my pump because I don't have to take injections anymore..." (That would have been the 18 year old me's answer. But really, it's a stupid answer because injections stop being the issue for most people round bout the 1000th shot(or sooner). Pumping is about greater life flexibility, making your insulin suit YOUR eating habits.(not vice versa) But usually, when some random person asks me about my D,the first thing to come out of my mouth is that first sentence. Unless it's another pumper(& in that case, we just pump bump & go on our merry ways).

Wearing a tubed pump is very much a putting diabetes out there in the open thing...with the Omnipod you just don't get that kind of a reaction.(Although I have been told my pod looked "gross" and "like a tumor". Thanks, lady.)

And I'm ok with that.(it makes for less of a lonely D-world,when you meet others with it)

 

Posted with Blogsy

The Sweet, The Salty, & The Rogue Pancreas

I used to think that getting any disease that restricted the intake of certain foods would be the absolute end of the universe. I've always loved food(like 95% of the human race) & find it something to be enjoyed. Growing up, I lived on a farm(& thus was able to inhale vast quantities in keeping with my teenage metabolism). And then diabetes entered the picture & the first order of business was to get me to gain weight, a lot of weight, so they put me on a 2400 calorie a day diet & gain weight I did-52 lbs. (which took me out of the death camp look and into the solidly chubs look. Quite frankly, the insulins I was on did nothing to help me to lose any of that, it was "feed the insulin" pretty much 24/7. And then I went on a pump, and successfully lost 20 lbs (mostly just from not having to stuff my face so much) Weight stayed pretty stable, within 10 lbs for a number of years. Pregnancy (and turning 30) came, gained 45 lbs, lost 40 lbs pretty much 2-3 weeks post delivery. (Has stayed stable since) I'm happy with my weight, but I wish more of it were muscle.(being able to wrangle a screaming,kicking,psychotic 28 lb toddler up to bed hardly counts)

(Who doesn't love bacon? Even meatless bacon..if you're a vegetarian)

I love food, & I pretty much eat it whenever, wherever. Gluten rocks my universe, meat/cheese are must haves, and yes, I eat HFCS containing products, on occasion. (Anybody left reading this?)And I love my diet coke.( I think the only disease that I absolutely couldn't handle would be one where I couldn't have any soft drinks.) I'm aware that no one warns to give up gluten unless it is for valid health reasons, & my intent is NOT to make you hate me for waxing poetic about my love of gluten..this is just journaling thoughts from a person who has very little clue what a challenge staying GF must be. However, that being said, I know a lot of people lately who have had to go GF because of celiac disease and my knowledge on the subject has exponentially grown. There's still a lot of food that you can eat, and eating fresh fruits/veggies forces you to eat more healthy foods. (Fritos are GF. Win!!!!! I could live off that and homemade rice/Chinese-ish dishes the rest of my life, if need be.) Although I think I could accept celiac a lot more now (in my life, not affecting my loved ones) my screening test at Friends for Life was negative. I have other digestive issues...pseudo gallbladderitis (in June) which might be vaguely related to my stupid minuscule, disappearing pancreas. My Endo did some more antibody tests to further determine if my pancreas is still attacking itself(if so, at some point I will start having to take digestive enzymes because my pancreas will stop producing them. And glucagon will no longer be effective in a severe low.) If said pancreas disappears entirely, I will pretty solidly have diabetes(and any potential cure treatments that materialize I'd be ineligable for). Basically I might have diabetes for the rest of my life.(not that I was expecting one soon but eventually,yeah) The Artificial Pancreas would still be a major help in my life, though. (I don't mind doing the matinence stuff as long as the thing gives me a long, healthy life)

In the meantime, I'll drown my woes in bacon & diet coke.

 

Posted with Blogsy

Dreams: On Hold

On the day that I failed nursing school, I kissed my husband & son goodbye in the wee hours of the morning, climbed into my car, & drove into the city to go to the hospital. As I was in the 2nd lane of the left turn lanes, following several other cars, preparing to turn left along came another car barreling straight towards me at what felt like ten billion miles per hour. "It's going to stop," I thought, not really expecting otherwise. That light for them was solidly in the red.

But it didn't stop. And by the time I'd processed this & swerved my car straight, it was like I could literally feel the whoosh of a near head on collision with said car. And then I went on to clinicals, had the absolute worst day in the history of mankind, and it was all over. But here's the thing..some might call me lucky(being alive is a hecka lot better then failing out of nursing school). I don't believe in luck, I know I've got a guardian angel on call 24 hours a day and I won't be leaving this planet until God deems fit. I won't say that failing has been easy to accept either, but I do know I'd make a good nurse(and maybe that will be as an LPN until I get whatever stuff together that I need to get together. The instructor made me feel a tad better by telling me that their program was the hardest one in the state,& students who have failed theirs have gone to others and passed.) It just won't be happening any time soon.

So now I'm 3/4 of an RN..starting from the beginning. The grief is still quite raw, the negative thoughts inhabit my nightmares each and every night. It is literally like a part of me has died. (And it's probably going to take awhile not to feel that way)

One day at a time.

Posted with Blogsy

Of TSlims & Tantrums

Life is chock full o' crazy right now, it's the 6th out of 8 weeks in the Med Surg/Mental Health rotation. I'm not going to personally comment on what that is like, but I focus on two main things (exam prep, and surviving each clinical day without getting expelled from the program) & count down the days till the insanity will be over.(if it weren't the Internet, I could tell you a lot more) As for that little thing called diabetes..it's been downgraded to the very last thing on my to do list. I have absolutely ZERO time to deal with low blood sugars, and my bg average is pretty high. Survival dictates getting all your patient care done/charting in the computer/giving medications/ongoing assessments/nursing diagnoses care plans done in 5 hours that you are on the floor (& nobody dying)or you will get a plan for success. Fortuently, this insanity is only for a couple of days a week but it is tough. The goal is to turn you into a fast-thinking nurse, but when you feel like you don't know anything every second of every minute of that time it is really stressful. Not to mention the instructor has eyes like a hawk and if you even look like you might be having a low, you may get questioned/& possibly sent home. I really don't know how that even fits into the whole "diabetes accommodations" thing I have in place, but their line of reasoning is that those are the requirements of the program/what the real world is like.

Exam 3 is on Monday, and the final exam is in two weeks.

 

Several weeks ago, I made the switch to the Tandom T-Slim..I am officially done with Omnipod. The Rep stopped communicating with me(RE: my need for a new PDM, having gone through about 15 pods & figuring out that the issue lay with the device itself) and I couldn't reach any of the company higher-ups. Insulet is having both supply issues and new pod issues, so this isn't surprising, but the manner in which the area Rep treated me really ticked me off.(she said she'd get me a new PDM, and then just stopped talking to me. I left several phone messages,etc, with no response. The Tandom Rep confirmed that said rep is a bit of a mental case.) The rep came out to our house & ran through the nuts and bolts of things. (Because if I have to read anything else not connected with nursing school, my brain will explode)

Impressions:

Customer Service rocks. I had a pump within two weeks of faxing the info to Tandom. And my Endo rocks, for randomly just approving it out of the blue with no communication from me regarding my pump switch.

I really like this pump. The reservoir fill process is a bit lengthy, but not horrid. And I use Apidra without any clogging problems.

I love the bolus calculator(by which you can add up various numbers of carbs just by pressing the + button) So, so sleek and sexy.(also better for my control!) And although I'm not a fan of being retethered, it's actually better for control when you can bolus whenever and not have to physically be hunting for the bolusing remote. And although I don't hate Insulet, I am very disappointed in them as a company right now. A local friend is also on the Tslim & she encouraged me to go on it.(it's awesome meeting PWD who live literally 10 minutes away & go to the same Endo you do!) I highly recommend this pump..the days of scrolling through numbers is just SO 20th century.(it's all touch screen, with appropriate safety measures/locks in place)

So that's life right now...plus dealing with the govt shutdown, which put my hubby on unpaid furlough to who knows when.(we have savings but its still stressful) I really hope they clear up this mess pretty soon, I think both sides are at fault here. We can't keep spending ourselves(as a nation) into more debt, we need to trim all these extra non-essential stupid programs(jmo) and cutting waste. It's just pathetic.(and yet, we also need this agreed upon..these functions MUST go on, if we are to continue as a country)

 

Posted with Blogsy

Nursing Student: Law 101

Tort. Assault. Battery. Neglect. These are words that make every nurse(and nursing student) break out into a cold sweat, to re-evaluate their chosen career. Because you see, the law is not kind to nurses..the law is brutal. You hear about all these terms, all the legal mumbo-jumbo and you're like "Whatev-I'm not a lawyer. I don't need to know that stuff."

But you do need to know it, & the biggest thing you need to know is that YOU DOCUMENT EVERYTHING that you did. Because if you don't document, it didn't happen. And maybe you've been a nurse for 25+ years and forget to document something & the hospital fires you and the nursing board revokes your lisence and you don't have the money for a court battle and you have to start over, find another career path. Or maybe the patient suffers actual harm, & you end up in jail.

(I don't think type 1's do well in jail. I think I'd be living at 300+ mg/dl in fear of collapsing from hypoglycemia, and probably not make it out alive.Nothing is under your control in jail,& when you collapse in your cell unconscious the guards probably just let you die.) Therein lies my biggest fear of nursing, and I think that would dictate a fairly low-stress ZERO CHANCE OF DISASTER nursing field. I hear stories of nurses who make just one mistake and their career/life is over,& it scares me to death. These are good nurses, & it happens just like that. But mostly I never want to end up in jail, with no freedom to manage my diabetes and having limited contact with the outside world. To barely see your kid, or your spouse, or anybody..it would feel like you were truly,truly alone. That would be the hardest thing ever. I wonder plenty if everything I don't know is going to impair my being a nurse(should that ever happen), and its just scary to think about the consequences of that ignorance/forgetfulness.

Posted with Blogsy

FFL: The Hard Stuff

When J was being born, amid the crazyness of water breaking and contractions and epidurals and hourly blood glucose checks and being dragged off to the OR at 2:30 am for a C-Section,we made sure everyone we came in contact with knew about this kit. Because, you only get one chance to tap this resource, and you better not miss that boat.

 

Yes, it made for a rather stressful time, but the hospital staff handled things just fine,and hand delivered it (that morning)to the courier person who rushed it off to the depths of some cryogenic safe to be stored, hopefully never to be used, but there, nonetheless.

Primarily, stem cells are being used to treat cancer..but research is being done into other diseases,including diabetes. And maybe one day they can be used to CURE diabetes.

There was a session at Friends for Life that was for parents with diabetes. For me, sitting in that room,surrounded by people on the other side of the parenting/diabetes equation it was kind of bittersweet. Because, while we talked about the day-to-day integration of parenting with diabetes, there were some hard topics discussed, topics that nobody likes to think about much less put out there but the reality was right there. Because the reality is, kids w/parents w/diabetes are much more likely to get diabetes themselves.(and there were parents there,who also had children with diabetes)

Dx'd young. Dx'd slightly older. Which brought up the issue- would you want to know? (ie, have them tested for antibodies) It's impossible to think rationally about this, and much easier to go back into ones comfort zone of trying NOT to think about it but the reality is, you can't hide from reality. Kids get dx'd with diabetes as babies,as toddlers,as school age,etc. They get dx'd on breastfed,they get dx'd as formula fed. They get dx'd on organic diets and they get dx'd on eating junk food. Nothing really "protects" you. (If genetically,you are predisposed)If you are tested,and you have antibodies, there's still no clear cut timeline as to if/when you'll develop diabetes. Some people even test negative and then develop diabetes anyway. (Trial Net does yearly follow up) So the question is, why would you want to put your kid through all that and not know anything anyway?(except a bunch of vague maybes)

And then I read this article, from a dad clearly in the same boat.(in terms of the psychological struggle) Maybe you are helping research, maybe some day they will develop a vaccine that can prevent type 1 diabetes entirely. (I'm game with that. I think any parent would rather have something for the rest of their lives rather then their kid get it. I'd rather see it prevented, then cured.) And maybe they are developing treatments that will prolong the life of the fizzling islet cells. But the bottom line is, knowledge is power, even if that knowledge devastates you. Life isn't meant to be lived in fear of what "might" happen, but neither is it meant to be lived in denial that something could ever happen.(somewhere,somewhere there's a balance)

 

Posted with Blogsy

Strip Safely (and carry a BIG stick)

In the beginning of my diabetes journey, a blood glucose reading was a thing written in stone, the Gospel truth.

"What's your number?" "What's your number?"

I had no reason to doubt the number, to doubt the archaic brick of mid-90's technology that took a whopping 45 seconds to spit out that number. I was good, I was bad,that number ruled my life.(as well as my parents)

And then came the day when my blood glucose dropped from 77 to 33 in the space of about 10 minutes. As a good little PWD who actually was listening when the CDE taught Hypo 101, I drank juice & eagerly awaited the sensations of this, my first low blood sugar. (this was about a month post dx) Those sensations were not long in coming. Shakes, blurry vision,heart racing, numb face & tongue...I was convinced that I was dying. As my blood sugar continued to drop, my brother gave glucagon & sure enough, I was in the land of the 400's in double quick order.(thankfully.Woohoo for freaked out family members.)

I think that was the day that the seeds of doubt as to the accuracy of said meter(and strips in general) were first planted in my mind. The years (and circumstances) have set the mind set of double checking every extreme high, & taking the other numbers in the context of "this is X. It could be right but it's likely 20% off in either direction & I'm going to take that into account if I correct it." It ain't the lab draw,people.

But it shouldn't be that way, not for me or for anyone else. Lots of people base major insulin decisions off that one blood glucose, they cannot afford strips with better accuracy, cannot afford to test more then 2(or so) tests a day. At the very least, those strips should meet the minimum 20% guidelines by the FDA. Because their lives depend on it.

Where does the "big stick" part come in? Well, this is where YOU, the people, get to go (get off your rear end) & exercise your citizen rights(or even legal resident, because this issue pertains to you, if you live in America. And even in other countries like New Zealand, this is a big concern) Go here to get started.(gives you the sample letter and everything) I'm not a big political activist, the last time I contacted my representive in Congress it took a full two months to here back from them, but they DID respond.(I was impressed-a personal letter and everything.) They know who vote them into power.

Because you,& the lives of millions of people are at stake here. We need strips to be held to a standard, however loose that standard may be.(20% is bad enough, but It's better then nothing) And that's a cause I believe in.

 

Posted with Blogsy

Imposter

I'm a little upset right now.

(Warning: what you are about to read will probably disgust you...proceed with caution. And if you should read the entire thing do not,in any way, take the content therein then other then that of my own personal diabetes opinions.)

This is my child. He is 19 months old, bright,funny, a social-ite (and overall, quite healthy except for the occasional ear infection.)

Having said that, you may feel free to head over to a certain large diabetes website & listen to a webcast from a certain leading expert on diabetes & pregnancy.

I didn't make it very far,switching it off when I heard the words "I don't care about the mother. I only care about the baby."(apparently, it got even worse,when she said that every women with diabetes should have to view graphic!!dead baby images as a sort of scare tactic) In a flashback, I was back in my Endocrinologist's office again, crying hysterically over the best a1c of my life. Listening to her telling me that I was a horrible mother & killing my baby.)I had alot of guilt during pregnancy, guilt that because I couldn't reach that a1c that they wanted, my baby would surely be born impaired, or dead.(or I would die trying to reach that a1c) I spent the entire pregnancy locked in my little world of denial,& possibility of disaster.(yes, I had issues. A therapist probably could have helped.Trying to work through those.)
Here, on the other side, I can tell you that babies are tough little guys. I can tell you that doctors don't know it all, and sometimes a compromise must be made between what they want and the limits of you personally can handle. I can tell you (from the past)what a seizure from a low blood sugar feels like,& how I wasn't ever going to subject my baby to the effects of THAT(cut off of oxygen,brain damage, brain damage to baby?no thank you. I can tell you that given my a1c, my normal weight baby should have been fatter then he was..further proof that docs don't know it all.(and the guilt I feel when women with better control then mine beat themselves up for the weight of their baby. Please don't do that, you did a beautiful job. I'm convinced its 98% a genetics lottery.) We all do the best we can.
I'm convinced that the expert in question would be in favor of abortions for anyone not in the "under 6" crowd.(quote: There should be no surprises.) And while I worked my tail off during pregnancy, I wasn't (nor will I ever be..it's simply not safe for me in that subcategory. And I've further concluded, that many women with D decide not to have children because their doctors have played up the whole baby-is-doomed at X a1c scenario, which simply isn't true.(Not that you don't try to drop it ASAP,but it's much easier to drop actually after you get pregnant then before..it drops slightly naturally,and again,this is not medical advice in any way shape or form. Some people can actually get those sub 6 and sub 5 a1cs.(more power to ya,but not everyone can)But no pregnancy should be composed of docs (like her) telling you all those horrible things..we know. We know things can go wrong. We live it for ten months,every high,every low, every bite of food we put in our mouths. We hardly need a guilt accelerator.(She would never be my doc,not in a million years. I think my Endo, at least, kept the scare tactics under control for the most part when it became obvious that none of that crap was going to be true.)

Friends For Life: the Wednesday Prelude

Decisions are hard for me.

Which is how I found myself staring at the Friends for Life schedule, 15 minutes before the focus groups began,with still no earthly clue which one I wanted to attend.

The movie screenings looked pretty interesting, but the siren call of the traditional ones also beckoned. Visions of potential Disney gift cards danced in my mind, and which focus groups might actually stand and deliver.(it's kind of a guessing game) Except for the last session of the day, which my friend and I actually sought out the rep to sign up for. In the end,these were the ones I did. And I kind of missed out on most of the social media ones, because it's impossible to be three places at one time. (and I missed out on Diabetes Art as well)

Novonordisk: choosing your device.(pen) This one was pretty good, but I can't talk about it due to the contract-in-blood that they made us sign. I'm sure you understand.

Animas: Artificial Pancreas. I would have preferred the Tandom session, but it was full. Ours was totally snoozefest, basically putting a bunch of happy/sad faces on their poster(of AP idea features).

Medtronic Diabetes. More confidentiality forms, but this one yielded a small Lenny the Lion and a $50 Disney Gift Card. (it was quite intensive and lengthy) Love the company, hate the pump.(or something like that)

Then I went to hang out in the Bloggers hangout, and met someone from Twitter that I've talked to. It's pretty cool, putting names with faces but I struggle with overwhelming the poor souls(who are you again? ) and for that reason, I really don't feel I should say anything unless they actually kinda-sorta-know me. Half the interwebz reads their blogs. About five people actually read mine.

(the Lion & Me: we'ze cool. Photo in the exhibit hall. My kid loves his little Lenny the Lion(joining the big Lenny we got last year.) Although he still calls it "bear" as he can't tell the difference yet.)

 

Posted with Blogsy

Ten Things that I wish the Nursing Profession knew about Hypoglyemia

1. It's called hypoglycemia. It's not called freak-the-heck-out-and-dial-911-itis. Unless I'm unconscious.
2. Stop asking me if I feel better ten seconds after I drink the juice. If its a bad low, I won't be feeling better for another 45(and beyond) minutes.
3. I'm shaking like this because my cells are reacting to being deprived of glucose, not because I'm cold. Although I could be cold as well, piling 50 blankets on me is not going to fix the issue.
4. I can't be held responsible for what I do and say under 70 mg/dl.
5. Stop asking me what I had for breakfast. Totally irrelevant in the present situation, I'm on an insulin pump not NPH.
6. Stop asking me if I'm a brittle diabetic. I will kill you.(not really, but see #4) Hypos happen,most of all to those seeking tight control.
7.Telling me that I look so much better now does not,in fact, make me feel like any less of a zombie post-low.
8. I need a nap. Now. Not your "small bit of protein billion carb pb&j" sandwich.
9. I really,really appreciate a nurse that doesn't do any of the above. You're an anamoly. Thank you.
10. Hypos aren't just physically exhausting, they are embarrassing as well. I hope you get that. I hope you realise it's the last thing any PWD wants to hash out ad nauseum until the cows come home.
-----
Regretfully, I didn't get into the AP study..they made a new rule that if you were non compliant in a past study involving bg testing, then you can't be in any others involving daily bg testing. (for cost saving purposes) Well, I was(in the study 3.5? years ago..apparently I didn't test at least 4x/day. I do so now, more like 6-8x/day but it is what it is. I find it frustrating that they go digging around for obscure reasons to disqualify people though. (the study Endo calls me up to drop the bombshell, I never knew about it till then.)There will be other studies.(another one sometime this fall,that that reason wouldn't disqualify me.)

- Posted using BlogPress from my iPhone

On the Road with the Artificial Pancreas

He is the most interesting man in the world.

The "he", fyi, is Ed Damiano...a biomedical engineer turned Artificial Pancreas guru, and father of a type 1 child with diabetes. (and a speaker this year at Friends for Life. Perhaps he has been other years, but I've been kind of out of the loop. I was excited to hear his talk this year, to find out exactly how the Massachusetts clinical trials are going. (very well, apparently. On track to submit to the FDA in 2016, perhaps on time to be approved in time for his son to go off to college in 2017). And I was impressed by his drive (and smarts), but namely, I needed one very important question answered before I threw my approval to this particular artificial pancreas attempt.

NEWS FLASH: THERE ARE MULTIPLE ARTIFICIAL PANCREAS TRIALS GOING ON ALL OVER THE US, AND THE WORLD. I'VE GOTTEN A BIT TIRED OF HEARING ABOUT MEDTRONICS VEO SUSPEND(NO THANKS, DON'T TRUST IT) AND YES, EVEN DAMIANO'S. THE UNIVERSITY OF VIRGINIA HAS A VERY PROMISING ONE, THAT MIGHT JUST BEAT THE SOCKS OFF DAMIANO
'S.

Back to the topic at hand..oh yes, Damiano's trial. His system uses a dual chamber glucogon/insulin combo, and releases each, as needed. (other systems are solely focused on the insulin/suspend parts) My concern would be as to whether or not getting all that glucagon might make the user sick/nauseated, which Damiano assured me that the amount of glucogon released in the "microspurts" was only 1/8 of a standard glucogon dose and hadn't made anyone sick, to date.(I knew of a person in his trial who had gotten sick,and she assumed it to be from the glucogon. She had to drop out.) I mean, I guess a functioning pancreas does just that(release glucagon as needed) so it's not exactly a foreign substance to the body. (long term studies on this are still unknown though) By the end, I was thinking alot more highly of his AP then previously. (glucagon plus insulin just makes sense, and MIGHT keep the bg more stable then just insulin. But I dunno, because UVA's is also one sweet piece of technology and at this point I think I'd take any AP that was given to me) His system differs in one other key regard...it adjusts to the changing needs of the user. (not "fixed" on insulin: carb ratios and the like. Life is fluid, insulin needs are fluid, everything is always changing. And if my brain was an artificial pancreas I could do a heck of a lot better with managing my diabetes.(there are always so many variables that need adjusting for)

That session, regardless of my particular opinion, had every person in the room really excited and ready to go and sign up the very next week.(I get that, I do. It is cool beans, and if I lived around there I'd probably also want to be involved). But my involvement has been/and will be with the UVA project. (and then, I got an email from a clinical coordinator at UVA...which led to me being more excited for their project, then for Damiano's.) Still, anyone who has a desire to be in a clinical trial (esp. an AP one) should be.

Tomorrow I'm going in for a screening study. I'm excited to be a part of making a better world, for everyone with diabetes. (regardless of who wins this "AP" battle.)
(cross fingers and toes that I'll get in! I think the only thing that might preclude me from that, is whether my thyroid tests are in-range. I've been pretty bad lately over taking my thyroid pill.)

Friends For Life:Part 1

Let's talk about Friends for Life.

(was it exciting? Did anybody fall into the pool? Were there any Diet Coke drink-offs? Did the sponsors bust some moves, Gangnam style? Did you met any new DBFF? What happened?!?)

I feel like this conference was basically one big hyperglycemic blur, probably because it was. I had grabbed a box of bad pods, & basically Monday-Sunday was spent in upper echelons of 300 mg/dl. You'd think that,being at a D conference,the pump company reps would be able to help you out...nope,not in this day and age.(lawyers?!?) Changed pods 8x, got two pump errors,& even borrowed a pod from someone else. (shots worked,so it wasn't an insulin issue)

So,yes. I'm a little ticked off at Insulet right now.(they keep insisting it isn't a PDM thing) I'm about ready to say forget it, I'm getting a Tslim (it IS a PDM issue. I've since tested other pods from other lots & I'm still high) It seems to be impossible to get a hold of the rep in my area (to get a loaner)as well, & it's just ticking me off all around the board right now. Whatever happened to customer service? In the meantime, I'm back on my Ping.

So yep, FFL was as amazing as always..but I guess I just wasn't feeling it this year. It was fun, and I'm forever grateful to the two grandmothers who made it possible for me to go,but I've never before had such craptastic blood sugars over the course of a week.

(next time:the better parts of FFL.Friends. Exhibit Hall Swag. The sessions.)

Posted with Blogsy

If You Give a Toddler a Cookie

 

...he'll want some milk with that (just pretend it's milk,ok?)

 

Afterwords, you'll clean up the kitchen floor...

And he will want to be entertained.

 

After reading all the books in the house, you will go to ToysRUs...

And buy a red wagon.Which he will want to ride in. (after Daddy puts it together)

 

The ride will drop your blood sugar, and this will be your post-breakfast spike.(on waffles) Not that I'm complaining.

After that, it will be time to feed yourself cookies (and diet coke) to prevent going low. Your toddler will want more milk (and possibly cookies). (better choice: lunch) Repeat clean child,high chair,& kitchen floor.

 

A diaper change...

And it's time for a nap!(for Mommy too)

#dayinthelifeofatoddler

 

Posted with Blogsy

Summa Time

Most years involve some sort of surgery/body organ failure. (It's just how I roll, apparently) In 2012 it was my thyroid(6 months post C-Section). Nothing in 2011. In 2010, it was ulnar nerve surgery on my left arm,& the year before that I think was the Tonsillectomy. And the year before that I had an intestinal intussesseption & spent the later part of the year A.twice in the hospital and B.getting magnesium 2-3x a week.

So it comes as no surprise to me that something else has popped up. I've had lower right abdominal pain issues for a month...and my doc sent me in for a CT scan with contrast die. The results of that were extremely enlightening(per radiologist: "You have a really,really,tiny pancreas. I mean, it's barely there. Were you born with this?"/no, and now you're saying that my pancreas is literally disappearing and one day I might have to take digestive enzymes as well as insulin? My Endocrinologist has since reassured me that as long as "it" looks normal/not Dierrea'esque it's probably not disappearing(exocrine function intact) & she'll do some more research on that) Primary Care wise, it showed a cyst. So it was a referral off to the OB-GYN who did a ultrasound and confirmed the cyst..watch and go back to pcp if pain does not resolve. Gave it two weeks, & went back to my pcp. My pcp orders an a full abdominal ultrasound which then showed that the cyst had gone (from what they could see..one side was still rather unclear)but I have "sludge" in my gallbladder.
The next step is a HIDA scan.(which tests gallbladder function)(nuclear medicine) These require fasting at at least 4 hours in advance, & laying on a cold hard table for an hour while they take pics. That's scheduled for next Monday, provided nothing happens between now and then.

All things considered,as long as it doesn't mess up my Florida plans I can live with it. I still have all my "useless" organs(ie gallbladder, appendix,spleen) and if getting it out is required, well there could be alot worse scenarios.(just don't tell me that it has to come out eminently because I need this vacation) Being female,having D,being 30-40,and having had a baby pretty much
shoes you in for gallbladder issues.
- Posted using BlogPress from my iPhone

A Bucket List

Here's a few of the things I'd love to see happen in this life of mine...


1. Win the lottery. (oh, wait, that will never happen? well, a girl can dream. If I won the lottery, I'd set up a foundation for D-peeps to get needed supplies(test strips,insulin, glucagon, syringes, type 2 meds, etc.) I'd also take a longgggg trip around the world & perhaps buy a yacht to live on for the rest of our days) And I'd help my parents, sibs,family, and friends out. (financially)

2. Go to an Olympics. (opening ceremonies through closing ceremonies) I imagine that is pretty cool.

3. Finish the RN degree, finish the bachelors, finish the Masters.

4. Have another child.

5. Participate in more Artificial Pancreas research studies.

6. Travel. (see also: #1)

7. Perform an impromptu concert on UVA's grand piano (at the medical center).

8. Be in The Doctors/Ellen DeGeneres tv audience.

9. Be on Jeopardy game show. (live)

10. Live to a ripe old age. Although I'm not sure I want to live too long because at some point my husband would not outlive me (13 years age diff) and that is going to be awfully lonely. I want to go together. So, about to the age of 88.

11. Run a marathon. (yeahhhhhhhh...that one won't be happening anytime soon)

12. Get a puppy, and some gold fish. (and perhaps other pets that aren't cat un-friendly) Our cats are getting old though.

13. Move back to Virginia,(retirement?) get a rustic cabin (but not too far from civilization) and stock it to be prepared for any national disaster.

14. Volunteer at a diabetes camp.

15. Learn to quilt/knit/crochet.

16. Learn proficient Spanish.

and the last thing on my bucket list?

See a cure for type 1 diabetes come to pass, preferably applicable to me. I have a whole other bucket list reserved for THAT occurance, mostly involving foods that test out the realness of that cure.
Baby steps, though. (I'd take an artificial pancreas in the absence of that cure)

Random Bits of Double Up Arrows

Technology woes: I has them. On several fronts.

You know how most of the US is finallllllly getting to transition to the new Omnipods? (after being promised this since like, February. I'm not kidding.) Well, I'd estimate that 95% of my podding friends already have theirs. Strange silence for me, still. I have been ordering pods on a month-to-month basis because I didn't want to get stuck with 3 months worth of old pods that don't work with the new system. I get them directly from Insulet. Rumor has it that on the next "reorder" they will send you the new system/pods. I have not ordered in the traditional manner,& have somehow slipped through their (emailing)cracks. However, since they finally have approved me to get the new system(per over the phone), I was game to get a 90 day supply.

Not so fast. This,apparently, has to be approved by my insurance company like everything else. Why they wouldn't approve this when they already approve of the old pod system is beyond me. Then again,they will probably have to pay for the PDM (as well as the partial pod cost) and who knows how that will go down. The Insulet rep suggested I call & bug them,to expedite the process. Insulet isn't exactly helping the process along. It will probably be another week before I get approval/new system in my hands, which means its back to my Ping system for me.(on the last pod) Sigh.

And in other news, my phone is currently bricked...as I was attempting to install/jailbreak to Cydia. Then I tried to reinstall my phone stuff, and couldn't do that because my Mac operating system(Lion?) needed a major (lengthy) update. I know not of what I do, which is why it takes me 3x longer then it would take anyone else. My phone is long out of warranty with Apple(it's an iPhone 4), but I just can't bring myself to get another one/sell this one until something majorly mind-blowing comes out or this phone dies.(in case you were thinking I deserve to get bricked, for jail breaking) I jailbreaked once before,successfully. Jailbreaked phones are just sooooo cool,you get a ton more options/programs that Apple doesn't give you.

Endo appt on Friday. I could very well get my first double-digit a1c since post-dx, things have been that horrid on the bg front. I know I need to go back to the educator and really work on the overnights. However, don't expect any sort of consistency on the shot/pod/tubed pump method because I have to use whatever works or whatever I can get my hands on. I've also had some pain issues (cyst) for the past month,so there is always a reason for these things. It cannot stop there though, it's so easy to say "this is how it is and I'm going to wallow in it." People who live to 100 don't have that attitude. Gotta fix it.

My MIL comes today...so it's off to finish cleaning the house!

 

Posted with Blogsy

My Sugr: A Diabetes App Review

Several weeks ago, I got the chance to try out the My Sugr app (for a comprehensive review, you can read Scott's over at Scott's Diabetes) . Anyway, I'm fairly certain that the entire DOC knows about it at this point but these are just a few of my thoughts. The basic version is free, & that's currently what I'm using. (no one payed me for review of this app, all thoughts are my own)

Coming into this, I wasn't sure what to expect..diabetes apps seem to be a dime a dozen & none of them have really changed how I feel about logging.( HATE IT) I've always found paper logs to be more helpful then current apps.(at least, my Endo's spreadsheet log is. Very comprehensive. Only problem is, it's not exactly little & cute...it's an entire page for just one day. And over time? Forgitaboutit, not easy to discern patterns. But my Endo & CDE both dislike the Omnipod program downloader..so that's usually the path I go down when there is a major bg issue) But hey,why not? It just might not be like all the rest.

The first step was to name my diabetes monster. I christened mine "Sinbad the CGM" because that's the name of my Dexcom, & because I'm singerally short on good device names these days.

Sinbad & I were soon ready for action...I tapped the "+" symbol to make a new entry.

Time/Date

Location

Picture(you can use ths for food, etc...anything you want to remember for later use)

Blood Glucose

Carbohydrates

Bolus (additional area to type specific foods)

Temp basal

Activity(ranging 15 min-12 hours, additional area to type activity description)

Notes

36 icons to "tag" activity..ranging from meal related to illness,work,alcohol, etc. can use multiple tags.

Each of the above activities adds points to your point pile, which you can use to try out the Pro Version for a few days. There are also challenges that you can take, mostly involving exercise, that will get you a day or so of Pro. I think this is a good idea, because I'd want to try something out before I bought it.(the Pro Version, that is) To my knowledge, you have to have pro before you can import/export your data.The challenges give you vouchers for the Pro version.

This is what the home screen looks like. (it's a good summary at a glance screen)

Sidebar Navigator:

Logbook breaks everything down, day-by-day,in a color-coded (for exercise,carbs,insulin,etc) format

Analysis gives bg averages for 24 hrs,7 days,and 14 days.(as well as for each month)

In reports,you can export the info to your kindle app/iBooks/email/print. This is only an Apple app at this point,though they are working on an Android app.

Challenges:

Overall, I like this app. I would like to see bg ranges(adjustable for time of day, not just one flat range). I'd also like to be able to plug my basal rates into the settings & have that remembered, as that generally doesn't change on a day-to-day basis & it's a pain to keep entering that. The Pro version would really motivate me to buy it if it contained secret challenges that would give periodic Amazon gift certificate rewards.(yes, I'd pay extra for that element of surprise) I don't enter all my info,or those graphs would look significantly different(I'm really lazy) but hands down,this app trumps paper logs.(if used in the manner intended)

Posted with Blogsy

 

A Hitchhikers Guide to the Universe: Friends for Life '13

It's coming.

Friend-for-life-itis: an uncharacteristic phenemena experienced by a person with diabetes, family member, or a health care professional most usually in the weeks leading up to the event. May exhibit behaviours such as excessive list making, packing, checking the weather in Orlando, searching for the same such hash tags on Twitter, and squealing in excitement when anyone whenever someone posts to the Facebook page. Does not entirely dissipate upon completion of the event,but can be managed via upon seeing pictures, reminiscing, etc.

This summer, my mother in law will be coming to visit. For three weeks. I expect it to go well, the last time she was here the J-baby was a newborn. He is now mobile(walking), has a world of likes and dislikes, and says a few words. One of his dislikes hates is flying on planes/strangers/hotel rooms, and so I think that this year, it's best if he stays home with Grandma/Daddy. He'll be a much happier camper & not to mention thats the entire reason Grandma is transversing the entire country. I am slightly worried, because I've never been away from my kid for 24 hours much less a week but I think if I A. Call/video chat B. leave voice recordings, etc. he'll remember me.(but if he starts to cry, it will break my heart & wonder if I'm the worlds most horrible mother for doing this & should I jump on a plane immeadietly. I would take him, but I think Grandma deserves first priority.) For over two years, he's been a part of my life & I can't just turn off my Mommy brain & decompress from that in the space of a few days. (He will be fine. I will be too. Temporary Separation must happen eventually, or he'll be 18 years old & off to college & I will have never dealt with it & be a complete mental wreck.)

Friends for Life in the Disney venue is pretty cool, for a variety of reasons. I've always taken advantage of the Magical Express bus(free transportation), and I use Southwest Airlines to check (2) free bags (I take an extra bag with me to fill with free conference goodies. People have joked that I must have a body in there, it's generally that heavy.) Last year was an exception to the rule, as 3/4 of my suitcase contained baby items & no,no way were we bringing home STUFF with the sheer amount of baby, suitcases, several backpacks, car seat, and stroller to juggle through the airport. I also bring back my plastic Disney mug(they sell these for a fee in many of the Disney Hotels) (free refills on fountain drinks) which saves having to spend any money on drinks. (YEMV. They might make you buy a new mug, but I've been lucky. I recycle from year to year.)And if you know anybody with a car, there are nearby Walmarts,etc. where you can get snack/breakfast items to cut down on the cost of food. (the Conferance runs from Wed.night-Friday night,with Sat./Sun morning breakfasts. Most people stay till Sunday morning...which means you will be buying overpriced Disney food at some point).I don't trust their mini-fridges, I have both baked and frozen my insulin vials in them. (necessitating fellow conference attendees generously giving me some) I always travel with a Frio case, & just leave it in the room. (I try to learn from my mistakes)

Also characterized by the desire to hug everyone in sight. I'm not usually an exceptionally huggy person, but that's what FFL does to you. For 1 week out of the year, diabetes isn't so sucky and you are surrounded by 3,499 people who also get it. Working in some park time also helps the whole "magical week" feeling.

I hope to see you there.

 

Posted with Blogsy

The Friday Appy Hour: Savings

If you own an Apple Device, this post is for you. I do indeed love my IBabies(not as much as the human baby, but still, a lot). And I love to A. Shop and B. Save money...so the following apps make my life just a bit easier in that regard.

#1 Cardstar. This app takes the numbers on your loyalty card(CVS, Office Depot, library, whatever) and converts it to barcode form. The days of forgetting your card or carrying around 50 cards stuffed in your wallet are over...this is the 21st century, people. You simply whip out your phone,they scan the barcode,& you are on your merry way. Its also not dependent on Internet or wifi so you could probably even put it on an I-touch. I love this app.

#2 Retail Me Not. Before you buy anything,check for store coupons in this app. Again,no need to remember real paper coupons & so nice & tidy.(extensive,too)

#3 Shopkick. Gives you "points" for walking into various stores, (Target, Best Buy,Old Navy,etc)& more points for scanning various products & for buying products/gas. (can link to credit/debit card)Points can be redeemed for gift cards,etc.If you're going there anyway, this is worth your while.

#4 Receipts. Snap a pic, save for future account spending record.

#5 Coupons/The Coupons App. Another place to get e-coupons for on-the-go.

#6 Slick Deals. (#1 deal site in the entire universe) Gives you a reference to what you are looking for,when you are out and about.

These are some of the apps that I use..it's a pretty small,basic list.(searching:Coupons in the Apple Store will give you many more) Living Social & Groupon will also give you some good deals occasionally.(I draw the line at hydro colon therapy..no way,no how) My phone gives me so much more then the ability to make calls/play music/post to FB/tweet/picture load to Instagram/bid on Ebay,etc...) it's literally a life manager. (iPhone: Life as CGM:Diabetes Management) Probably other smart phones have a similar money-saving apps..but I enjoy the huge the huge selection that Apple has.

Next week I'll share with you some of my favorite diabetes apps.

 

Posted with Blogsy

Day 6: Diabetes Art (#Dblog Week)

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!



Poetry is my preferred method of expressing my D-feelings...so here you go.


If tomorrow never comes
If today is all we have
Diabetes
Deployment
Disasters-man made and natural
All terrible D's

There's a 365
During a qualifying exam
A 110
On a sunny, summer-ish day
A 44
Scarfing down smarties in a Target aisle while your toddler spills chocolate milk all over the floor
Don't stop believing
Eighty ok "in-range, or acceptable" numbers
And 520 that aren't.

It's not about the numbers
Seeking to define us
Seeking to control us
Seeking to destroy us
Showing us who is boss
Not playing well with life.
(grow the heck up, diabetes)

Inverting the equation
We are never defined
By a piece of inaccurate technology.
Up and down
Round and round
Consistently unconsistent
Expect the unexpected.

Maybe tomorrow will be better
Maybe tomorrow will be the same
Maybe tomorrow will be worse
But
The joys of this moment
The sip of this diet coke
The sand beneath my (still present) toes
The laughter of my toddler
Eyes that can see and read and experience the beauty of the written word
Is what I know in this moment
In fact, the best things of life
Diabetes cannot take from me
tonight, tomorrow, not ever.

Day 5: The Other Medical Condition

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)


I was going to write an entirely different post then the one I'm writing today. But this morning, I checked my facebook,checking on a friend that I haven't talked to in some time...and the condolences were there, scrolling down her facebook page.

She died one year ago today. I am deeply saddened.
I could delve into the myriad of other chronic diseases, discuss the bad and the not-so-rough ones. I'm not going to do that. I'm going to talk about that disease, that the world needs to know about, and may that have ultimately claimed her life.

Her name was Tess, and we met on an online message board for people with Bartter's Syndrome.Bartter's Syndrome, as you may or may not know, is an inherited kidney condition in which the ion (potassium, magnesium) reabsorbing parts of the kidney do not function correctly and dump out these particles back into the urine. This is a problem, because your body needs to maintain a constant level of these to function correctly, and if blood levels of them drop too low you can have seizures, heart rhythm disturbances, and possibly a heart attack. (as well as all over twitches and muscle weakness)Depending on just how screwed up those parts of the kidneys are, you may need massive IV infusions of magnesium or potassium. (if you cannot take in enough orally) Also, because magnesium and potassium strongly affect sodium and calcium, levels of those may be impacted as well. In rare instances, it may lead to kidney failure. Tess had had Bartter's Syndrome from birth,and was on pretty significant IV doses of various electrolytes. I'd been diagnosed at the age of 23, and had had a fairly stable time of it up until a hospitalization for an intesseception (in 2008), and then required massive doses of IV magnesium(in the beginning, 2-3x a week. I had no life.) She was a wealth of knowledge about the disease, and sent me several hundred vials of magnesium/saline solution, helped me figure out how to use an insulin pump to administer it, helped me find a competent nephrologist.(so I could stop having to get it IV) And then something strange happened, she was diagnosed with type 1 diabetes. (as an adult, in her late 20's) She'd had to deal with her chronic disease all her life...she knew what Bartter's Syndrome was like. I'd had diabetes for 11 years, I knew what that was like. Bartter's Syndrome is extremely rare, something like 1/million people. Type 1 diabetes= not so rare, but still, rare. (if you were going to get diabetes, you'd be more likely to get type 2)
Which made us probably the only two people on earth to have both. And she lived just a state away. I regret never getting to meet her, I'll always regret that. She was so kind and helpful and med-savvy. (I found out from her obituary that she'd been in RN school, before having to drop out.) She asked me questions about the insulin pump about diabetes and insulin pumps and eventually got an insulin pump.

People live with Bartter's Syndrome, successfully. People live and thrive and have careers and babies and travel the world with this disease. For me, its never really been the constant, daily, life-threatening threat (it has been once or twice, but not consistently)...and it may have actually saved my life when I was diagnosed with diabetes.(as metabolic alkalosis balances out metabolic acidosis). It allows me to eat as much salt as I want, and it doesn't interfere with day-to-day life. (all I have to do at this point, is to get an IV infusion once a month) I'd defiantly switch my diabetes for just this disease.But other people aren't so lucky with it. Some people have a rockier course with a disease, while some just sail on through.

RIP, friend.

Day 3: Accomplishments, Large and Small

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hillary of Rainie and Me for this topic suggestion.)


Pretty proud of this one.





And this one.



(giving whole blood to others a total of 35x over 7 years)


And even my cgm case matching (and formerly insulin pump case matching) ensemble throwing-together skillz have improved over the years.



It's still a work in progress though...there's so much that I want to accomplish (despite the diabetes). If there was a cure tomorrow you wouldn't hear me complaining that I couldn't take it along for the ride, though.

What have you accomplished, with diabetes?

Memories: The Day the World Went White

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)


It was May 1999, (it always seems to be May when such things happen, but I digress) and I'd just been diagnosed with diabetes 5 months prior. I'd worn glasses for nearsightedness for much of my life, and coupled with the diabetes diagnoses my vision was on a rollarcoaster. After diagnoses, however, things improved, went back to normal. One month after diagnoses, I'd had an eye appointment with a pediatric opthamologist who told me that things were back to normal, in that regard. And my a1c improved from 23 to 14 to 9.

And then came May. There were no signs, no indication of what was about to happen. I'd had a little bit of blurry vision (that I chalked up to allergies) and went to sleep one night, blissfully unaware of what was about to happen.

Next morning, my vision was almost completely obscured, it was like trying to stare through a white sheet with little pinprick holes. Naturally, I freaked out...and we got a stat consultation at the pediatric ophthalmologist.

I remember sitting there, scared out of my ever living mind, thinking that this was the end, this was blindness & diabetes had already managed to ruin my life already. And I remember the pediatric ophthalmologist talking about me, not to me, to his roomful of residents as they all took a look-see at my eyes. I remember the words "we can try surgery, which may or may not work, because we're not entirely convinced that this is all that's going on," and how that made me feel. I remember the pediatric ophthalmologist saying he'd only seen this before once (in his entire career)...it was an acute, rapid growth of cataracts within a few days time, and most probably related to the extreme drop in my hemoglobin a1c. And then we went home, to wait for the surgery.

Blindness. I couldn't read my meter. I couldn't draw up my insulin. I couldn't read, watch tv, do so many things you take for granted. I could see (and feel) well enough not to run into the wall and give my self a concussion, but that was just about it. My family went on a camping trip (I had to go) and I was a moody,depressed, introverted, wreck. They went to a Star Wars movie and I couldn't go. And one morning, there was a severe low blood sugar (the number "12" was involved) that made me even more ticked off at it. I was almost completely dependent on others, for my disease management. And that didn't help my desire to foster independence and self-sufficiency with this disease.

Two weeks later, it was time for surgery. I'd never had surgery before. The room was white, and cold, and the orderly had to gently guide me with his arm to prevent me from tripping over the IV pole and falling flat on my face. I felt shame, embarrassed that I couldn't see the bed & that I was half naked & I couldn't see where to climb up on. I felt fear that I'd never see again. And I felt anger, that diabetes had done this to me.

When I woke up, there was a patch over one eye. The world was still white, and I still couldn't see anything. We went home and I had to spend much of that time laying flat to give my eye a chance to heal. The next day, the resident doctor took the patch off & the world literally smacked me in the face with it's clarity. I saw the doctor, I saw the floor, I saw every detail with amazing new wonder. And the tears rolled, unabashed, down my cheeks.(if it would have been proper to jump up and down and hug him, I would have) Two weeks later, they did the other eye and both eyes could see again.

Diabetes took something from me, but it gave me back something much more precious. I don't take my sight for granted anymore...I cherish every day I have with it. I am grateful that medical technology is able to fix that particular complication. And I pray that that is the only serious complication that I will ever have, from this disease. It taught me that even though you can't always prevent this stuff from occurring, you still need to take diabetes management seriously. (odds are much higher that it will happen, if you don't try)

Day 2: We, the Undersigned

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

We, the fathers/mothers/sisters/brothers/wives/husbands/aunts/uncles/grandparents/grandchildren/caregivers/friends of the Diabetes Online Community, are writing to you, yes, YOU.(oh clueless, blissfully ignorant, person)Our lives are challenging, and ever revolving around this disease. As such, there are a few things that we feel that need to be changed...and changed NOW.

#1 Let's stop the diabetes discrimination at school, and in the workplace. Let's allow students with diabetes to be able to care for their diabetes needs, without fear of reprisal. Let's fire the jerk instructors of the world that don't want to make those accommodations. Let's make our workplaces and schools SAFE places, where we can all feel good about going to.

#2 Someone needs to conduct a massive re-education of the masses. All diabetes educational materials written prior to 1993 should be burned,and everyone should attend a mandatory diabetes educational seminar. (travelling CDE's?) As well as RIGHT information being taught in schools and universities. Newspapers and other media that publish diabetes inaccuracies should be heavily fined for such offenses.Maybe some day people will understand this disease better, and the ignorant jokes about diabetes will stop.

#3 People with diabetes need access to good physicians, CDE's, proper meds(etc.),and a host of other resources to properly manage their disease. I don't have any answers to how this can take place, but I do know that there are many, many people out there who will never be able to afford good care or maybe ANY care and that breaks my heart. People with diabetes deserve the best care possible.

#4 People with diabetes should be rewarded for trying to take care of themselves. Listen up, insurance companies. I think you should pay for gym memberships, spa days (mental health IS important), and my diet coke RX.(ok, so that last one isn't that important) Incentive is a powerful motivator, and you need to encourage those feelings of wanting to do better. You could save so much money in the long run if you'd cover these things before they esculate to the point of gangrene and amputations and sepsis and million dollar stays in the ICU. PAY FOR THEM. Education. Mental Health. Diabetes supplies. This is not college level math, this is so basic that even I (who is very, very, bad at math) can see it.

Signed,
The Diabetes Online (& offline) Community

To Endo, With Love

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

Dear Endo,

I wish you'd say "Good Job." I know my a1c isn't 5.9 (nor will it ever be) and I'm not a lean, mean, marathon-running machine, (I wish that I were) but I get up every morning and try to do my best with this diabetes crap. It isn't always easy, its rarely easy. I wish you knew how encouraging it would be to hear those words coming from your mouth. That hasn't happened yet, not when I delivered a beautiful healthy baby boy,(a "Congrats!" but no "Great job, he's perfect!") and certainly not when I got the best a1c of my entire diabetes existence and you told me I was a bad mother & harming my baby with that a1c and I went home and cried for two solid hours until the DOC pulled me out of the depths of my 7 month pregnant depression. Everyone has bad days, and I've forgiven you for those words. (I cannot, however, forget them. They are seared onto my soul for eternity.) I used to fantasize about getting that under 7 a1c and getting to hear those words from a health care provider, but now I have come to realize that its probably not that big a deal to you and won't ever come to pass. I know I will feel good about any and all a1cs around that number, but it would be nice to feel that my health care provider could also be my cheerleader. I still respect you and your solid clinical skills, I get great care from your office and you (with the exception of pregnancy) don't hound me about my blood sugars. Thank you for that.

But mostly, I just wish you'd acknowledge the effort that I put into this..you have no idea just how uplifted and amazing that would make me feel. Diabetes is a life long journey, and "thus shines a good deed in a weary world." You've got the power to make this journey a little less burdensome.

Signed,

Your Patient