Saturday, March 01, 2014
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
Hashimoto's-both over,and under,active thyroid
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.
- Posted using BlogPress from my iPhone
Thursday, February 20, 2014
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?
A Type 1 Person With Diabetes (for 15 years)
Wednesday, February 05, 2014
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.”
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.
- Posted using BlogPress from my iPhone
Saturday, January 11, 2014
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.
Tuesday, December 10, 2013
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.
Thursday, November 21, 2013
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
Monday, November 11, 2013
"Hey, is that an insulin pump?"
"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)