The Type 1 Connection

Why are there so many songs about rainbows
and what's on the other side?
Rainbows are visions, but only illusions,
and rainbows have nothing to hide.
So we've been told and some choose to believe it.
I know they're wrong, wait and see.
Someday we'll find it, the rainbow connection.
The lovers, the dreamers and me.

Who said that every wish would be heard
and answered when wished on the morning star?
Somebody thought of that and someone believed it.
Look what it's done so far.
What's so amazing that keeps us star gazing
and what do we think we might see?
Someday we'll find it, the rainbow connection.
The lovers, the dreamers and me.

All of us under its spell. We know that it's probably magic.

Have you been half asleep and have you heard voices?
I've heard them calling my name.
Is this the sweet sound that called the young sailors.
The voice might be one and the same.
I've heard it too many times to ignore it.
It's something that I'm supposed to be.
Someday we'll find it, the rainbow connection.
The lovers, the dreamers and me.
-Kermit the Frog in the Muppets "Rainbow Connection"

I think a lot about diabetes,and not just because I have to..I wonder more about the mysteries of autoimmunity. Type 1,is,of course,a serious muck-up in the list of possible muck-ups but it rarely stops there. Diseases such as
Celiac
Hashimoto's-both over,and under,active thyroid
Addison's Disease
Multiple Sclerosis
Lupus

as well as asthma & food intolerances/allergies seem to run rampant in the type 1 community.(and those related to them) It seems to me that so,so much of it is genetic...and then there's that small,small subset of human beings whose only medical problem is T1...and no one else in their 5-10 siblings/extended family has it. (And what about those people who literally eat buckets of simple carbohydrates a day,yet their robust pancreas happily trucks along to a ripe old age,never failing to deliver)And then there's the whole "age at dx" gamut...ranging from hours old(!!) to 70+(I honestly dunno who the oldest person to get type 1 was.) Scientists/researchers have little clue why one really get it when one does.(breast milk does not prevent it...formula doesn't cause it,some people have viral like illnesses that provoke it,some people have antibodies, some people live in places where it seems like it is caused by the environment.)But it also seems to me that the more autoimmune drama one has in their life,the more likely it is to be passed on to offspring. Perhaps we will never understand the "whys," and really, I'm ok with that..if we could only cure the durn thing. But the other autoimmune diseases still crop up,still complicate lives, they can't be ignored. We need to understand a lot more about why the body attacks itself to be able to develop therapies to treat (and prevent) it. (And them)I think that there may be multiple paths to a cure,tailored to that particular PWD..someone dxd at 2 may need a different therapy then someone dxd at 45. (This is why I think there are many triggering causes...not just the "viral" one. We all have some immunity, but it seems like the bar on some peoples is extremely low, to get diabetes so young.

Somewhere out there,is an answer to this autoimmune mess...and I have faith that we'll find it,one day.




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Dear Miss Manners: It's not the Hunger Games

Dear Miss Manners,

Allow me to introduce myself. I am a wife, mother (to a very small child) daughter, friend, Chevy driver, lover of all things Diet Coke, and future nurse.. I, like many People With Diabetes, wear many hats. I check blood sugars and take shots (when warranted, but normally I utilize and insulin pump) to ensure my safety and the safety of those around me. I do it for me, and my loved ones.

Somehow, I get the idea that your knowledge of diabetes may be slightly impaired, or even downright non-existent.

"oh, don't diabetics take shots? And blood test..once or twice a day? This can be done discreetly, away from squeemish eyes." (common diabetes misperception)

It's not like that, Miss Manners. It isn't 1959 anymore, and many people with diabetes can take 4+ injections a day (if they do not use an insulin pump). Diabetes care has improved dramatically, and the recommendations (along with the desire for good control) has many people checking blood sugars 4 or more times a day. I personally check my blood sugars 7-10 times a day. I wear an insulin pump, that looks every bit as hip and modernish as the actual year. (it's 2014, get with the program) Needles don't bother me, and they don't bother my non-diabetic husband/son/or friends either.

And now I'm going to let you in on a little secret..
(post checking my blood sugar, I DO NOT:)
.. slit my wrists, war paint my cheeks, or smear blood all over the airplane seats. It is not a scene of mass carnage, it is a simple miniscule blood droplet(like a pin drop)...and easily blotted clean on a nearby tissue. Done. I daresay you've probably shaken hands with a person with diabetes at some point, and perhaps that person with diabetes checked their blood and did not wash their hands afterword.(For the record, most of us don't have AIDS or anything else communicable) It's not as disgusting as you might imagine it to be, and I'm sure that you've probably never seen a person with diabetes doing any of that.)

When I was pregnant, Miss Manners, I would check my blood sugars up to 15 times a day...all to ensure a healthy baby. Have you ever visited the bathroom 15 EXTRA times a day in addition to the state of having a pea-sized pregnancy bladder? That, in addition to even more shots? I didn't think so.) Simply put, it is hugely impractical to have to visit a public restroom many times a day just to perform needed medical tasks.

But what bothers me the most is the message that you are projecting to young people with diabetes. I was there once, alone and ashamed about my disease. From the beginning, they feel "different" and society equates syringe use with illegal drug related activity. Young people can become ashamed of their disease. This leads to hiding it, depression, isolation from their peers, and perhaps even being mistakenly arrested. I am not ashamed of my diabetes or doing what I need to stay healthy. But others haven't had that level of support and nutering to be comfortable with being out there in the open with it.

It's 2014, Miss Manners. It's a new century...and diabetes deserves a fresh outlook, a disassociation from the "don't ask, don't tell" policies of the mid 1900's. Diabetes isn't something to be ashamed about, it's not dirty, and shovelling it back to a filthy bathroom stall does a disservice to us all. Caring for yourself (and others) is one of life's most beautiful things. Isn't it time to move forward, not back?


Sincerely,

A Type 1 Person With Diabetes (for 15 years)

On Scientific Debates

I don't consider myself to be an uneducated hillbilly..by any means. My family has engineers and a physicist,computer programmers, a nurse,a Marine...3 PHD's. I don't think you can pigeonhole a certain lifestyle onto a group of people who believe a certain way. I happen to believe in Biblical (6 day) creation, although many scientists believe in evolutionary(million of years) creation. My husband works in a place that has many such people (who don't consider themselves to be religious) who believe in theistic evolution..why,because while science is still the biggest belief in their life the evidence still points to a higher power that set it all in motion. These people aren't stupid either..they have PHD's in mathematics,physics,etc.(and they are helping to run the gov't of the United States) Sometimes their study of science leads them to their Christian faith. 

      “I was a young man with uninformed ideas. I threw out queries, suggestions, wondering all the time over everything; and to my astonishment the ideas took like wildfire. People made a religion of them.”

-Charles Darwin

but for the most part,it is a faith that has to be relegated to the non-professional areas of ones life..to admit that you believe in Creationism /God is social suicide. (Freedom of choice?its a joke)Universities won't hire you,you are ostracized and looked down upon as stupid. Yes, discrimination is real, and you cannot really dare to voice any sort of opposition against the world wide religion of evolution. And giving students a "choice" to let them decide for themselves is rarely done.(outside of the Southern US)

Charles Darwin himself knew that he was trailblazing a new belief,and in a world where change offered a chance to break free of religion this choice was jumped on by the majority. I'm not a PHD and I don't understand the specifics of why exactly one would care to believe in an unspecified Supreme Being that doesn't care to be involved with the Universe past the initial whatever (one might think that they'd want to know more).  It's true,nobody was there, nobody knows what went down. My faith leads me to believe that God created the Universe, whether by 6 days or a million years is rather irrelevant(but there is no reason for it to have taken millions of years) the point being, life must always have existed in some form..not from swirling dust particles. If that makes me stupid,well,so be it. I'm actually NOT stupid,I've read a ton on the subject from both sides of the aisle..but I can see why people choose to call me that..if you do not understand something or to acknowledge the possibility that there may be a god then to you, there really is only one option,and that is evolution.

End rant.

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2 Years & 3 Days

 

This is my now 2 year old..hard to believe it's been that long! It was a rough first couple of weeks for him. After the 3 am c-section, they monitored him with me for the first couple hours & when his blood glucose started dropping, gave him formula. That didn't work so they placed an IV & gave him Dextrose. That worked, but then his temperature started dropping so they placed him on antibiotics until cultures came back negative for infection. (That took a couple days) Cultures came back,they took him off the antibiotics and then his bilirubin levels started to rise (getting into the moderate range) so they treated that with phototherapy which effectively brought levels back to normal the next day. His temp came up a little bit, but after a small surgical procedure it dropped again & it was 3 days after that before it had come back up to where he'd be ok out of the hospital. He was discharged on the day before my due date.( a full 9 days in the hospital) I don't know if D had anything to do with it, I've never heard of any other normal or large D babies having this particular issue. Pediatrician said that he likely just needed those few extra days to incubate/regulate his temp. He was born at 38 wk 4 days, and weighed 7.3 lb.(aka the largest, most developed, kid in the NICU) it was still hard to have him in the hospital for so long & I cried every day for weeks. I really didn't have a reason to cry compared to some of the sicker the sick kids I saw in there but I did anyway, it was all very overwhelming. But he did get out, & my mom literally saved my life...driving me to the hospital to see him,fixing meals/helping with the baby & doing everything else when I got pneumonia & could barely drag myself out of bed.) Eventually I got better,& life became as normal as life with a baby gets. I'm so glad that there were no lasting health effects for him from that. If I could have told myself something prior to all of that, it would be not to get so upset over every little bump in the road...enjoy the journey. So many people never get to bring their babies home from the hospital. My post-pregnancy hormones were on a roller coaster, there was no hope of getting me to see things logically. I still think that it's sad that NICU babies aren't treated the same as a normal healthy baby, nurses who take care of you just see you as the patient, sans baby. And that hurts.

Still on my Tslim pump. Switched insurances, so I am going to have to start using Humalog when my current Apidra stash runs out. It's always fun finding out what your new insurance doesn't cover.

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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.

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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

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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)

 

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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.

 

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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.

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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)

 

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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.

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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)

 

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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.

 

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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.)

 

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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.)

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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.)

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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

 

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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.
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