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.)

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)

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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.

The Day the Thyroid Died

August 16, 2012.

"You're so hypothyroid I'm surprised you're still standing."

Coming from my Endo, I suppose that is high praise.(or something) I don't get a choice about the "functioning" bit...the baby has to eat, life has to go on (regardless of how I'd rather just stay in bed all day. But the funny thing is, I am relieved...relieved that there is a cause for my utter exhaustion/weight gain(yeah, 10 lbs)/digestive woes/highly labile blood sugars). You don't really want to mention these symptoms unless there is a cause,but when she started questioning me about them, yep I pretty much have most of those symptoms. It's kind of like before you're diagnosed with diabetes..feeling crappy feels like the way you've always felt, and you can't imagine feeling better.

Oh, and my a1c is 8.6. I think it's been about 8 years since I've had an a1c of that (non) caliber...pass me a gold star. (kidding) That's not entirely accurate, it's falsely elevated (from my hypothyroidism), a fact that I find a marginal bit of comfort in. ("Hey, I bet my a1c is really under 7...right?") My insurance company isn't covering in-office a1c's any more(the Endo office has just been doing them, and writing off the cost) but the Endo's office is now laying the law down..and I have to get them at the lab, the week prior to the visit. (in the future) So the fact that I paid $54.67 (out of pocket) to find out an horrendously crappy a1c is kind of amusing. I actually feel like of passe about that number..even if it really was 8.6,I'm not upset over it. I know things will get better, & when I have enough energy I can actually get them better.

So I started on Levothyroxine (50 mcg/a fairly low dose), and in a few weeks, will have thyroid levels rechecked.(and go from there-will probably have to get the dose adjusted upwards) I am feeling slightly more energetic,and I'm hoping as my body gets re-TSH-ized I can resume feeling like a human being.

I'm also going to try out the One Touch Verio...got freebie one at the Friends for Life conference and liked it, enough to the point where I'll order a three month test strip supply & see what it does for my control. I feel like the Freestyle does a pretty good job with mirroring my actual bg/symptoms feelings but people say the freestyle reads too low. I like the pattern spotting of the Verio, but I'm not wild about how much off it is (compared to the Freestyle). Getting used to it may be an insurmountable challenge. (I'm going to give it at least 3 months). (I'm not the only one with doubts about switching) I love my pod, and I don't want to switch to the Tandem (regardless of how cool it was...pod trumps all) but I also don't want to switch to the regular One Touch strips (when their new PDM comes out). I'll just test on another meter/enter that number into my PDM...I hate when the pump companies force you to change strips.(to be pump compatible) One Touch strips have not been as accurate as Freestyle...in my experience. (Yours may vary) Of course, One Touch Gold (for the Verio) may be an entirely different beast then the regular One Touch strips. And it may actually be a good thing for my a1c...the Verio strips tend to read high(er) then the Freestyle.

On, towards better days.

Nursing School: Take III

Yep, here I go again. Now with an adorable,active (almost crawling) little 7 month old...life doesn't slow down for anything.

The course in question is Medical Surgical (part 1)...and it's my third attempt. (the first attempt was a "drop out on the first day of class" affair and the 2nd,I thought I would be all SuperWomanish and do it all. Didn't work out like that & the icy,bitter shards of what went down is something I still can't talk about, even to my blog)

Third attempt. Last attempt. If I fail again,I'm out of the program. I believe that I can do this, but most of it will definitely be a mental journey (as I face some of the same individuals who did their very darnedest to make sure that I failed). Because I'm not an idiot,it wasn't the coursework that got me. There is one thing that I learned through this though,and that is that "trust" is not something to be given out lightly...I am too naive. Not all instructors are there because they want you to succeed. (Some are there just to collect a paycheck) Trust is mine,trust is not something I have to automatically give to you just because you have a string of credentials behind your name. These are lessons burned into my soul, trial by fire...still fresh from the experience.

Anyway...back to the whole "registering for school" deal. To be able to get accommodations, (aka taking tests in the testing center/being able to have food/glucose available/being able to treat highs, lows as needed) I have to go through the office of Disability Accommodations. I have to have said accommodations, or I'd get suspended for eating/suspected texting/etc. (the joys of diabetes, nu?it is is almost not worth the trouble & I wish I could just hide that I have it) So, right before the start of the new semester, I request a "renewal of accommodations" packet (through the school website) and then go to pick it up from their office. Inside that packet are three separate forms..each form is in triplicate. (white, yellow, pink)

Form #1 I take to the testing center, they sign, I sign, and they keep the yellow copy. I keep the pink copy, and return the white copy to the DSS office.

Form #2 is an instructor "memorandum" (more specifically,listing the exact accommodations needed(eat/drink in class, monitor bg,medical supplies present,1.5x time) to remind them that they have a student taking tests in the testing center, and they have to drop off a test there. (so I can take them) Instructor will sign, I will sign, they will keep the yellow copy, I will keep pink, and the white copy goes back to the DSS office.

Form #3 is the official course form/memorandum for the teacher's file. The instructor signs, I sign, and they keep the yellow copy, I keep the pink, and the white copy goes back to the DSS office.

The testing center is on the opposite side of the campus, which means that I'm usually missing half an hour(or more) of the lectures. Not that I mind, but while everyone else gets to take their test/go to lecture in the same place, I get to run around everywhere attempting to keep on track with everyone else. Yeah, this "Special Treatment" thing is not all fun and games. The lectures I could repeat in my sleep (by this point),and I'm hoping they'll use the same tests (the answers I think I'll have remembered) so that that part at least will be stress-free.

It's entirely possible to be a good mom/go to school at the same time...and I want this degree. I've been working towards this for 11+ years,and if it's not to be, it won't be because I didn't give it my all.

Scare Yourself Every Day: The D-Chronicles

I'm not sure what I was expecting...something like the above, perhaps. (it didn't look like that at all)

Anyhow, I came, I saw,I signed 3 consent forms & was duly eye dilated(R) up. Was taken back to a separate waiting room where two other patients joined me as the baby made shrieking noises to pass the time. Dr. S(paghettio),my ever so buyount opthamologist came to take us over to the lasaring room (where I parked the baby stroller in the corner),& put my head on the device rest.

Click. Click. Click. SNAPPPP. It wasn't painful to the eye, but the frequency was horribly unpleasant to my ears.

"This can't possibly be painful," said Dr. Spaghettio, noting the look of deep consternation on my face.

SNAPPPPPPPPPPPPPPPPPPPP.


"Not painful to the eye..it just sounds horrible."

SNAPPPPPPPPPPPPPPPPPPP.

(I think that was my brain-this is not a pleasant experience.)


"There is no way this can be painful!" Dr. S. continued to insist.

(whatever, dude. I don't think you've ever had a lasar zapping around inside your eye

before.)

SNAPPPPPPPPPPPPPPPPPP. (IS IT OVER YET?!?)


"A few more zaps...you have a huge pupil." (why thank you)

SNAPPPPPPPPPPPPPPPPPP.

It was only a few minutes of this, yet felt like lightyears.

"All done! See you in a month."

"Great." I get up from the chair, locate my baby and my sunglasses, and roll on out
of there. "I hope that's done it."

Later that day....

(painkiller time. I'm not sure where he got the idea that said lasaring is never
painful,maybe because he's never had a patient under the age of 40 to go through this. Perhaps older people have a higher tolerance to pain then younger folks.)


It seems to have been somewhat effective...I'm hoping a few more days & it'll be as good as the left eye. Anyhow, I can now cross that one off my Reverse Bucket List. (I'm sure it won't be the last time a lasar goes zapping around in there).

A Few Good T-Cells

Many people with diabetes (myself included) fight the continual auto-immune wars.

Yes, we're hot (autoimmune) messes. Type 1 diabetes, celiac disease,thyroid
disorders,etc.etc.etc.



I imagine my thyroid cells like champions of yore (perhaps the Spartans and their Battle of
Thermopolae) , defending that pass, down to the last cell. Or perhaps those
t-cells that currently do
battle against my thyroid aren't of the same caliber/brutality as the ones that
finished off my islets. For my thyroid has been dealing with this onslought for
about 14 years now...concurrently with my diagnosis of type 1 diabetes. I've been
off/on Synthroid several times,pregnancy tends to increase the "needing help"
factor,but it keeps a lickin' and keeps on ticken.' My Endo (very much the thyroid
person, she is convinced all T1's are headed for being messed up in that dept.)
keeps watch over it with a wary eye...it's anyone's guess when it will die for
good.) I'm not really worried about it,when it happens, it happens,and its probably
the easiest organ function to self-regulate.(pop a daily pill)


Family Fun Fact: there's an additional autoimmune disease prevalient in my family.
Rheumatoid Arthritis is it's name, and both my Grandma and Mom had/have it.
It's a very genetic disease, and much as I don't like to think about it,it's
probably coming for me. Now that I've A. passed 30 B. survived pregnancy, for the
past couple of months my joints have been stiff/hurting. Ignoring it/doing more
exercises/self-medicating/etc. hasn't really improved the situation, so I went to my
doctor for some screening bloodwork (and checking for anything else, like Lyme
disease). Most of the time it shows up after kids (like 40+), but I think that it'll
probably go after me early(given that I don't intend to have 6 kids and spend the
majority of my 30's pregnant). Pregnancy is a state of immuno-comprimisation, so
that's why I think whatever's going on has waited till now to strike. If I do have
another auto-immune disease,it's going to be tough to deal with(LEAVE ME ALONE,
DISEASE). Diabetes is one of those things that you hope you can live a semi-healthy
long life with,but there's not much comfortable about a progressively debilitating
disease. (Plan B: go ahead and have six kids so that they can take care of me when
I'm too arthritic to care for myself & my husband, being 13 years older then me, may
not still be alive)

I really, really, hope I'm wrong,even Lyme disease sounds like a good alternative.
(easily treatable, end of situation)

The Girl in the Plastic Bubble*

(this is as bubble-ish as I can get us. I'm not a Photo-Shop Pro)


Sometimes it feels like we live our lives in a plastic bubble.


"Don't eat that."

"Exercise."

"Don't live alone."

"Keep your a1c under 6.5, and your risk of complications will be seriously decreased."

"Be sure to floss/brush/get regular checkups/never cut your toenails yourself/don't go barefoot/don't procreate without permission/don't drink more then 2 drinks/blahblahblahblahblah..."

That list goes on. We are, in the eyes of the media, healthcare profession, and the general public...a fragile species,that needs to be sheltered from the big bad world. (that will kill us) Our plastic bubble (of rules and regulations) will keep us safe.


But the thing about plastic bubbles is, you can't stay in them forever. Just like John Travolta's character had the yearning to rebel & go live life on his own terms,(regardless of how scary that was) we have to let diabetes conform to our lives...not the other way around. We can't live in a hospital (above and beyond the fact that you'd not be living very long in there anyway, with the rate of iatragenic infections) and reciting of the mantra "What would my Endo Do?" (in said situation)doesn't always jive with what we want. You've got to balance life with diabetes & keep on keeping on.

Run marathons.


Have babies.


Go be a world-class surgeon. (or firefighter, chef, Indy race car driver, etc.)


I am not a girl in a plastic bubble. I am not "fragile", to be lumped in with a million other PWD you may have come in contact with. I am unique,
on my own journey & not about to take the opinion of your brother's girlfriend's mom's first cousin-once-removed opinion about my disease. And till the day I die, I won't be defined by the lack of a functioning organ.


*(If you've ever seen the movie "The Boy in the Plastic Bubble"...(starring John Travolta)you'll have caught the reference.)

Dblog Week: I Want You to Know

Today let’s borrow a topic from a #dsma chat held last September. The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”. Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything.

Diabetes isn't about the destination, it's about the journey. And that journey just happens to coincide with this little thing called life.

It's there when I roll out of bed in the morning.

It's there when I'm running errands.

It's there when we're out with friends at an all-you-can-eat buffet.

It's there when my car breaks down on the highway & I'm down to my last test strip & I haven't eaten in who knows
how long.

It's there on your wedding day.

It's there when you're in labor,and that jello you ate just came back up.

It's there for a big test, a first kiss, a broken heart.

It never goes away. And it never takes a break. And like the wind, it blows wild and free...it does not like containment or predictability & will come back to smack you in the rear each and every chance it gets.

I've lived with it for 13+ years,and I don't know everything. I'll continue to learn and adapt till my dying day, which hopefully won't be because of diabetes, but I can't say for sure that it won't be. Because with this disease,even if you think you have it "controlled", just one bad series of events can kill you. The flu. A bad hypoglycemic event. Running out of supplies in the middle of nowhere.

So if you do have someone in your life with diabetes,I would encourage you to try and be more understanding & supportive. Diabetes is not a "just do this and you'll be fine" disease. It takes a toll, both mentally and physically. No one has diabetes "figured out"...not your doctor, not the diabetes gurus, & not you.(or me) Your diabetes is not my diabetes, and we must manage it different ways..due to the circumstances in our lives. But one thing I know,diabetes should fit into one's life, not the other way around.

Diabetes Blog Week- One Great Thing

Today's Topic:

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!

(photo courtesy of Flikr-LilyWhitesParty, Creative Commons. Mine is probably twice as big, and 3x as stuffed)

Be Prepared. -Boy Scout Motto


If there's one thing I've learned, in my 13+ years of living with diabetes, is that there is no such thing as being over-prepared (for every possible scenario diabetes can throw at you). It was a lesson learned by flirting with disaster on several occasions,& it has made me into a person who can't just hop into the car with a light little handbag containing the bare essentials.No, I must come prepared for the possibility of Armegeddon (with the handbag containing the following(at the bare minimum):

-2 juice boxes
-roll of glucose tabs/smarties
-PDM (blood glucose meter) case/lancing device
-spare POD, insulin vial/syringe
- 2 or 3 additional test strip vials
- Wallet/cash/change(if I do need to get something else)
-a can of diet coke
-gum
- granola bar, crackers
- cellphone
- earbuds
- water bottle
-coupon organizer
-tube of lotion
-tube of hand sanitizer
-chapstick
- Kleenex
- sometimes my E-reader
-reading glasses
-sunglasses
-various and assorted papers
-medications

As you can imagine, this can get quite heavy to lug around but there is a security in having the stuff with me.(as well as having the honor of being the go-to person that everyone asks for "stuff" that they've forgotten) Even a nasty low can be knocked back into submission without the aid of glucagon, etc. (some of the other stuff is just common sense,such as the extra D-supplies (because if an infusion set or pod can fail, it will fail) One should be prepared for at least several days (D-wise), in my opinion. I don't live in the middle of nowhere (this area is very well populated) but the traffic jams make getting around quite a headache. (at times)

Now I just need to extend that organization to other areas of my life. (like the mess in the basement...sigh)

He Calls Me "Goo-Gah"

And being his mommy is my highest privilege.

Mr. Hypo is (not) Your Friend: A D-Myth, Debunked

If you were dx'd back in the 60's or 70's, you may have had this charming little book entitled "Mr. Hypo is my Friend." It was meant for kids, to get them comfortable with the idea of having very large non-disposable needles inserted into their skin (on a daily basis). Back then, it was no small ordeal (especially for a child). Those needles were called "hypodermic syringes" (hence the title of the book). Unfortuently, I couldn't find any images of said book. (they still might be out there though)Back then, lows were generally referred to as "reactions" (and not so much hypos)...and warm & fuzzy word associations with the idea of a "hypo(dermic) device" were better tolerated. (I don't know of anyone who "loves" having a low blood sugar)

I'm here to tell you that Mr. Hypo, in 2012, is no longer your friend. Hasn't been, for a long time. Mr. Hypo (these days) associates with juice boxes, glucose tabs, hastily scarfed Skittles in the middle of a Target check-out lane, little red glucagon kits, ambulance rides, IV bags of D50, and horrendous hospital bills. And sometimes Mr. Hypo flat-out kills you. It's very sad but it happens, repeatedly, all over the country and the world (sometimes despite every precaution you take to prevent it). It will continue to happen, unless there's a cure for this disease. Yesterday afternoon was my first endocrinologist appt. since December. Going into it, I didn't expect anything great from my a1c...babies have a way of turning diabetes into an afterthought. Regardless, I was just going to bite the bullet & attempt to get back on track. (I also haven't changed my basal rate in two months) I got checked in, weighed/blood pressured/pulsed/bg/a1c'd (with the assistant) as usual, and then a new nurse showed u & confiscated my PDM for download. (this is a new thing...I've always brought in paper logs or if I needed in-depth anylization had to go upstairs to the CDE's office) Interesting. My Endo strongly dislikes the Omnipod reports though so I still brought my handwritten paper logs in (to provide clarification on some points). In marches my Endo,exchange of pleasantries,& we talk about the birth (etc.) and she tells me my a1c (8.1). Expressionless, I deadpan "Oh, yay." (unfortuently, she has no sense of humor & I have to explain that I'm being sarcastic. I'm not really glad that my a1c has gone up so much,but not surprised.) I think she was a bit surprised that my baby wasn't 10 lbs, that his weight was normal. She said I'd know (more) what to expect for the next time & that rather sent strong shivers up my spine.(if there is a next time, its not going to be for several years, if I have anything to do with it) And that's true...I had no control over when the baby was born, but I'd have tried harder (those last few weeks especially) to keep a tighter bg range and B. keep them in till 40 weeks. (if possible) Because my baby could have used that extra week, to get regulating his body temp. down better. Anyway, she made a few tweeks to my basal rate & we talked about starting fenugreek to up my milk production. Fenugreek has some lovely side effects(makes you smell like maple syrup (slap a pancake on me & I'd be appealing enough to eat) and can cause hypoglycemia)but at this point,I've got to do something drastic before it dissapears for good.I want to do the best for my child,and though I know formula feeding isn't the end of the world, breast milk is superior. (no doubt about that) As for it causing hypos, it's like anything else...YMMV. I've been on things in the past that did the same thing (Symlin, Alpha Lipoic Acid) Just gotta monitor frequently. (and put my Dexcom back on...the more safeguards I have, the better) Mr. Hypo is not anyone's friend, but if I'm going to have a better a1c I'm going to have to be getting more of them.

2011: A Year, Reviewed

It was a year in which I:

Started Nursing School

Found out I was pregnant

Rafted the mighty Colorado River

Met (& remet) old & new friends at the Friends For Life Conference in Florida

Turned 30

Went to 10 billion doctor appointments

Cried for hours over a 6.5 a1c (my best ever,& the best of the pregnancy!)

Saw my diabetes turn 13...

Dropped out of nursing school,to dream another day

Gained 40 lbs (New Years Resolution=you kind of know what!)

Gained a greater sympathy for disabled/handicapped people's challenges because when you can't do hardly anything for yourself,life is pretty difficult. And I'm one of those people who'd rather fall down trying,then ask for help.

Went to a diabetes meetup (SimonPalooza) in NYC...& felt massively better about my sorry DLife (& everything else,in general). It was refreshing.(& seeing my first Broadway Show was pretty cool too!thanks to Cara R.!)

Here's to 2012,& baby coming SOON.

Hope

Have you met Hope?

Hope wears a medical alert, the latest Keds tennis shoes...and a smile that will melt your heart.

Hope is in the "All clear" from the eye doctor.

Hope travels thousands of miles to meet up with 40+ DOC'rs. (sight unseen)

Hope is a virus, & I wish everyone could catch it!

Hope beats strong on the fetal Doppler.(& in your own heart as well)

Hope is in the research labs...it's a fine time to be a mouse or a rat!!

Hope is painful,hope can't settle for status quo.

Hope gives up Saturdays to walk,bike,& walk for a cure.

Hope sells sugar-free lemonade(& Girl Scout Cookies) towards that cure.

Hope never dies..but it can disappear for weeks/months/years on end.

Hope & I are not best buds...but we need each other,more then words can say.(we are more then casual aquantinces)

Hope needs its own RX pad.

Hope savors each victory, & forgives past mistakes.

I hope you've met Hope...cure or not,we all need to believe things will get better.

30 for 30: My Invisible Illness

(aka 30 things for the 30 year old!)

1. The illness I live with is: Type 1 Diabetes

2. I was diagnosed with it in the year: Dec. 10, 1998.

3. But I had symptoms since: May 1998...I recall getting personally acquanted with every single water fountain/restroom on all 3 floors of the high school. (it was the summer of driver’s Ed)

4.The biggest adjustment I’ve had to make is: Snacks, Eating, and not being my own person anymore.

5. Most people assume: That I’ve got it together by now, & my blood sugars never go over 120 or below 70. (“Do you have it pretty well regulated, dear?”) Yeah, right. (I’d like some of whatever you’ve been smoking) Every day is a constant battle.

6. The hardest part about mornings are: That they exist. (period)

7.My favorite medical TV show is: The Duggars/Greys Anatomy/Private Practice/What Not to Wear/etc....I don’t think I’ve got an absolute favorite, per say.

8.A gadget I couldn’t live without is: You probably think I’d say my insulin pump, or my Dexcom...but I could probably live without those. My iphone is the love of my life, though.

9. The hardest part about nights are: Sleeping on my side...but that’s not diabetes related, that’s pregnancy related. I was a back sleeper for 29 years and suddenly, I had to go cold turkey. (no easy thing) No one ever told me about that little thing known as “Supine Hypotension.”

10.Each day I take (X) pills & 0 vitamins: Well, it depends. I take at least 1 pill, and I’m supposed to take a prenatal(very lax on that one though) & there are the random aches & pains & allergies that I’ll occasionally have to pop some more pills, but yes, one a daily basis, just one. I’m trying to keep the pill brigade to a bare minimum right now. I do pump insulin 24/7, though.

11.Regarding alternative treatments I: if it works for you,& it hasn’t been shown to be toxic/damaging/etc. I think “alternative” treatments may have additional benefits. But you can’t “replace” insulin altogether, & you need to keep your HCP in the loop. I have taken supplements/herbals in the past, but I don’t pretend to speak for the DOC at large.

12.If I had to choose between an invisible illness or visible I would choose: I’m going to go with the invisible illness. If I don’t want to share it, I don’t have to share it.

13.Regarding working and career: I dunno what I want to do exactly...I’m leaning towards something in either pediatrics or research. I’m still very much the naive, impressionable nursing student. I don’t think being a CDE is in my future, I’m not the teaching sort. At this point, I’m just crossing things off my list (of RN jobs I don’t think I could ever do).

14.People would be surprised to know: That “Yes, I can eat that!!!”

15.The hardest thing to accept about my new reality has been:
That the “Golden Years” probably won’t be so golden, unless there’s a major breakthrough/cure. I fear the impending complications.

16.Something I never thought I could do with my illness that I did was:
Every day, I wake up & discover something else that I can do that I never thought possible with diabetes. Fear Factor. Job(s). School. Pregnancy. The list grows as my life goes by, & sometimes I look back & think “I did what?” (in my wild and crazy youth) Diabetes certainly throws monkey wrenches into the above, but it doesn’t have to “stop” any of it.

17. The commercials about my illness: are interesting, I feel a sort of “bond” with some of them in question...but the meter ones make me feel like smashing something.

18.Something I really miss doing since I was diagnosed is: Drinking an extra-large, sugary Slurpee on a hot summer day. I’m sure its entirely possible, but I’ve never been brave enough to try to figure out the bolusing sequence on that one.

19. It was really hard to have to give up: I wanted to enter the military, & well that was obviously out.

20. A new hobby I have taken up since my diagnosis is: Cross-stitch. I enjoy stabbing things (that aren’t body parts) with needles. (a sort of diabetes voodoo)

21.If I could have one day of feeling normal again I would: I’d eat a zillion carbs, & wash it down with a couple of Daquiri’s & veg out in front of the tv for the rest of the day. (of course, “normal” in this case means no D, & the absence of pregnancy)

22. Want to know a secret? One thing people say that gets under my skin is: “Have you had it since you were a baby?” (I know its called juvenile D, but why don’t you just ask me WHEN I got it?)

23.But I love it when people: just listen, and don’t judge!!!

24.My favorite motto, scripture, quote that gets me through tough times is: You can do this!

25.When someone is diagnosed I’d like to tell them: It’s going to be ok, you can do this.

26.Something that has surprised me about living with an illness is: that most of the time, I deal with it fine. You get used to it.

27.The nicest thing someone did for me when I wasn’t feeling well was: Brought me soup/liquids & made sure I was doing ok. (& called the doctor for me)

28.I’m involved with Invisible Illness Week because: It’s going around the DOC!

29. The fact that you read this list makes me feel: Hopeful for humanity. Invisible or not, we all need to be more understanding of others.

30.My illness has taught me: To be prepared for most “disaster” scenarios. Diabetes doesn’t have as much power over you, if you’ve got the antidote to the whatever it throws at you. I try to stay one step ahead of the ballgame, so when that disaster comes, its not "as bad."

A Letter To My 17-Year-Old Self

Letter writing day - Tuesday 5/10: In February the Wego Blog Carnival asked participants to write letters to their condition. You can write a letter to diabetes if you’d like, but we can also take it one step further. How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them. How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams? Maybe you’d like to write a letter to your child with diabetes. Or a letter from your adult self to the d-child you were. Whomever you choose as a recipient, today is the day to tell them what you are feeling.

Dear Self,

I'll cut right to the chase,you feel like your life has just come to a complete and irreversible end.Your eyesight is tanked,your chosen career path is now "off limits", and your new medical regimen feels like the cruelest,strictest imposition ever imposed. (you are a freak,who the heck has "snack time" at the age of 17?)Not to mention,you're still scared out of your mind whenever a "236" flashes across the screen of your monster Accucheck Advantage,envisioning all the complications it will bring.(those feelings will pass,you are not doomed to a certain death with bgs like that...sometimes,such numbers are unavoidable)

Those feelings will get better with time...& you will choose another career path,filled with the shoes of some of the finest individuals to walk this Earth.

Trust your gut,self. Doctors and CDE's will disappoint...they don't know it all.You're going to find out that while the management responsibility is largely yours alone, the burden needs to be shared.Strike that-MUST BE SHARED. Are you listening? Go out & scour the Internet,do what you have to do to get that support.(if nothing local) Because without it,you shall feel like the Worst PWD on Earth.(and very likely will have this confirmed by medical providers) You aren't that,self, no one is.You need to feel that you are not alone. You'll meet incredible role models(and 1 or two ax murderers/esses with diabetes, and you'll feel that you aren't so much the quirk of the town. Millions of PWD live with these challanges,all over the world.

You'll learn that "Diet" is not necessarily a four letter word and you'll learn to hate OJ and Kendall alcohol swabs,forever.

You'll stumble to find how diabetes can possibly fit in a romantic relationship and you'll learn that in the one that was meant to be,it was never an issue anyway.

You'll become an aunt(x 9) ,& you'll say goodbye to the only grandparent you ever knew.

You'll hear many,many lectures and you'll learn to tune them out(the ones inside your head/heart are not that easy to get rid of)

You'll have a few 600+ blood sugars,and you'll stare stupidly at the meter(having forgotten how to drive,you'll mainline 5 units to the gut & wait till you come down to 598 before magically,you can semi-remember enough to get home through the hyperglycemic haze)

You'll pass out,vomit on strangers,& ride in ambulances as both a patient and an EMT.

You'll total two cars and drive an $100,000 fire engine(murdering orange cones left AND right).

You'll participate on Jeopardy & jump off great heights on Fear Factor.(simulating skydiving).

You'll go to Europe and Hawaii & get more of a global perspective.

You'll vote in three Presidential elections & become forever a political junkie.

You'll finally enter nursing school...and feel a bit overdue when the youngest member of the class is ten years your junior.

You'll have other health issues...whether from crappy genetics or Murphy's Law,who knows.(they will put the diabetes in perspective)

You'll learn about the workings of the Health Care System...on both ends.

You'll learn that thinking about mortality,is not an issue to be put on the back burner for the later years.(as you come face to face with it on more then one occasion)

You'll throw your meter at the wall,gorge yourself on carbohydrates,leave your infusion set in for 15 days,& rebel against the powers that be...on more then one occasion. And at the end of the day,you will realize that the problems you perceive that diabetes has caused you are minuscule to the problems of trying to survive,in a 3rd World Country,without the means to treat it. Public mortification does not last forever.(& also,the Universe has it's own problems...& is not revolving around you) And while your at it,self,do something good for someone else every once in awhile.(it will also help lessen the crappyness of said disease) Plus,it's the Golden Rule.

To thine own self be true Self...always and forever.It's a good life,self,now go out & live it.

-An
Older You
(who still wants a cure,like,yesterday)

- Posted using BlogPress from my iPhone

Ten Years Pumping: A Pictorial Odyssey

On this date in history, my life changed, for the better.

(yes, it sounds cliche-ish, but its all true. I hated the imposed schedule of the 2-shot-a-day regimen. I was about 35 lbs overweight because all I ever did was feed the insulin.Pumping helped me to lose most of that.)













If I had to pick a favorite, well, I wouldn't. (they all have their good points, except perhaps that mid 80's Disetronic) But one thing I know, I don't think I'd ever go back to a Medtronic pump.(they & I had a major falling out,& I don't think much of their products.Your opinion may vary,& I respect that)I want to do a more detailed vlog about the differences.(when I have the time)

But today, is a day for cupcakes & ice cream, to celebrate the freedom that the pump brings.Diabetes is so much easier with a pump.

The Top Seven Holiday Gifts(for the PWD)

#1 For the Dexcom(er) (or Navigator user) in your life... I recommend one of these. You can get small camera & phone cases at any office supply store.(such as Office Depot,Staples) And I've found it to be much more useful then that generic "skin" they provide.(for the Dexcom) Yes,the skins look snazzy,but that feature really doesn't help me locate the Dex any quicker from the depths of my handbag...nor does it have a clip on the back.This does,and it's solid-does not get knocked off five seconds later.And I can find,& unzip it quickly,because it has a unique shape compared to the hundreds of other things that reside in said handbag.



#2 Music Player Cases

(looks like small backpacks)




I'm a fan of jazzed up meter cases...& these are perfect for the job,holding the meter,strips,backup vial,infusion set,syringe,roll of glucose tabs,& the Multiclix lancing device.(IMO,the greatest lancer ever,& no,I'm not being paid by Roche to say so,I am way too uncool for the likes of Roche. The Multiclix is just awesome...& better then the Delica,IMO.
These cases have several zippable compartments & a belt loop and are really quite the on-the-go accessory of the year.And I'm sure they exist in solid colors..for the male PWD in your life.

#3



I found this ornament at CVS..& it immeadietly found a warm fuzzy spot in my heart.(& a place on our tree) Love,love,LOVE anything diet coke themed.

#4


Cup-Cake-y lip gloss. (I prefer the CVS, or Bath and Body Works brands) So very yummy,and completely free (of the need for insulin). Of course, this often has the side effect of making one hungry for REAL cupcakes (and a trip to a real,live,cupcake establishment. More on that in a future post.) A gift card to a cupcake place is also an entirely appropriate present. (if the individual can cover such dietary excursions with insulin...I realize that not everyone who reads this is a type 1/family member of a type 1.Moderation is a must, for anyone.)

#5 If it's jewelry you're looking for,the JDRF and ADA have several new unique choices.(ideas gotten courtesy of Diabetes Living magazine)

- "Katie's Cure" (designed by a 12 year old with type 1)(Proceeds to benifit individuals living with type 2 diabetes,but that's completely beside the point) It's a very pretty design.

- JDRF charm bracelet. It would be cool if you could have the date of dx engraved on this(for $50,that should REALLY be an option)& I'm not sure I'd ever buy this,unless I had more money then I know what to do with..but I like the design.

- Diabetes Awareness bracelet. Hand engraved, in your choice of multiple diabetes sayings.($75)

- If you're looking for something much, much cheaper(and who isn't, these days) head over to the DRI & snag yourself an "I'm Tired of Diabetes" bracelet. It's made of recycled tires(environmentally friendly!) and the cost ($14.50 won't bust the bank.

-Finally, you can get an official Bret Michaels "Live to Rock, Rock to Live!" bandanna or an ID (I decide) tag from the American Diabetes Association.

#6
The Stupid Sock Creature. (now if they would only make the Stupid Hand Creature,they'd be all set) Good for a few laughs(and endless hours of preschooler amusement)

#7 And lastly, you can get a free Bayer Contour USB meter (along with 25 strips) at Walgreens. (until 01/01/2011) Go here, print out a coupon (for $20 off) and they'll adjust it down for you (it's on sale for 9.99). Or, you can find $10 off coupons for both the USB and the Bayer Didget in their pharmacy diabetes magazines.This is not just another "free" meter offer..this is a snazzy meter( with strips), which makes it a pretty generous deal, IMO.

Ode to My Diet Coke

Nectar of the gods, I salute thee.

I take a swig
and am transported

far beyond the world of SWAG boluses and fingersticks

to a simpler moment
to a simpler time
when none of it mattered
and a Coke was a Coke, not a nutritional nightmare

diabetes-free
yet diabetes friendly

It is addicting
It is powerful
It is a force of nature
It hits my blood stream like a glass of Orange Juice on a 55 mg/dl, & I am revived.

oh fountain of carbonated goodness

pure
odorless
flowing
swirling
enchanting


immersing my taste buds in an explosion of delight

you come in Diet Coke, Caffeine Free Diet Coke,Cherry Coke Zero, Diet Cherry Coke, Vanilla Coke Zero, Diet Coke With Lime, Coca-Cola Zero, Diet Coke Plus, Sprite Zero, Fanta Orange Zero, Vault Zero, Diet Barqs, Fresca Citrus, Fresca Peach, Fresca Black Cherry,Minute Maid Light Lemonade, Minute Maid Light Raspberry, Minute Maid Light Orangeade, Minute Maid Light Cherry Lemonade,Diet Nestea Lemon Sweet, Diet Nestea White Tea Berry Honey

the crack for the crack-less
the energy for the sleep deprived
the icing for a non-existent cupcake

this I want, this I need, this I crave
(addicted much? umm, yes)

I will raise my glass, and drink, to you.

A Fall D-Meme

What type of diabetes do you have: Type 1.

When were you diagnosed: December 10, 1998 @ 4 pm.I recall that moment precisely, I was staring at the clock in the exam room when the nurse practitioner told me the news.

What's your current blood sugar: 186, at 5:30 pm.

What kind of meter do you use: One Touch Ping. Occasionally,I will use my Contour USB.

How many times a day do you test your blood sugar: 7-10.

What's a "high" number for you: 150+, but I don't generally do something about it unless I have no IOB..or its 200+. I am sensitive,and drop quickly.
What's do you consider "low": Anything under 80 mg/dl.

What's your favorite low blood sugar reaction treater: Most often, I use juice or tabs. Airheads, Cotton Candy, or Candy Corn are all great ways to treat a low, providing I don't eat the entire bag.

Describe your dream endo: non-judgemental,tireless advocate,deliverer of world-class care,devilishly handsome (if male).

What's your biggest diabetes achievement: I don't have any. As of yet,I haven't achieved an a1c under 7, but I have lived almost 12 years with this disease and I consider that an achievement of sorts.

What's your biggest diabetes-related fear:Blindness. Everything else can be improved upon,(kidney machines,heart meds,etc.) but you can't fix permanent blindness. I love movies, watching the change in seasons,and so much in life that comes from that one sense. That cannot be replaced.

Who's on your support team: husband, family, friends, local pump support group. And the cats-because I think they want me around as long as possible...to feed/care for them.

Do you think there will be a cure in your lifetime: No. But I do think type 1 will become more like type 2-more stable blood sugars,not fluctuating as much.
What is a "cure" to you: Anything that keeps my blood sugar in a "feel good" range(70-150) and prevents secondary complications. Like an artificial pancreas..I have high hopes for that project.

The most annoying thing people say to you about your diabetes is: "I could never do "that"(syringes,blood tests,diet change, etc.) Well, I'm not doing this because I enjoy a Spartan lifestyle..I'm doing this because I want to have a long and healthy life. You could and WOULD, if it were you.


What is the most common misconception about diabetes: that you get it from eating too much sugar!

If you could say one thing to your pancreas, what would it be: I'm grateful you didn't go totally kaput on me..but you islets are the wimpiest things EV-ER. I would far rather take digestive enzymes then take insulin, for the rest of my life!