Sunday, September 14, 2014

In the Cloudz

We are not waiting.



Oh,wait. Yes we are. Because it's not quite as simple as buying a Pebble watch from Best Buy and downloading a CGM app that sends data to the watch...no,this requires some pretty major programming skillz. (Not to mention it isn't cheap) So,this setup, it comes in stages.
Stage 1: Go to Target. Buy cheap Android phone.(Moto G) Go to Best Buy. Buy connecting cables(micro to micro USB) Charge phone. Set up cheap phone access($9/month-Ting) Connect cables. Nothing happens. Beg on a Nightscout FB group for help. Get basic service after trouble shooting. (Data shows up on other devices in raw form.) New version comes out. Setup stops working. Now setup involves 3 more websites and hours more time. Do not have time or energy for that.
Step 2: Hire babysitter. Take devices...charge.
New Pebble watch: charged
Dexcom: charged,data present
iPhone: charged
Moto G phone: charged
Set up Azure, GitHub accounts. Root data to Moto G phone. Yell at computer,spend hours going back and forth between GitHub and Azure trying to get data to work. Finally works. Tweak some stuff,set up to Pebble. Download Pebble screen.Feel proud of self that finally works on any device until you see that new version has once again come out.(Do not have time to fool with that presently. Hope nice programming person can do it for me,post in "please help me" sub thread NightScout forum) And there you go. Not easy or simple,but is it worth it? I think so,having data on the wrist is a motivator for me to be more involved with my D-care. Drawbacks: you have to keep 4 devices charged for this to work,and the MotoG drains like nobody's business.(lasts about 18 hr on full charge) And you have to cart around a phone-CGM setup,which can be incredibly bulky. Your Pebble is kind of married to the iPhone,which is why that has to stay on(although you can see it on any other phone..this is the most convenient way for a parent/SO to see the data.) Although it could be seen on an Android 
smart watch,if that even exists.

I believe in this technology,but yes,it has a long way to go. But the fact that it's here is incredibly exciting.


Wednesday, September 03, 2014

The Hoarder

Q: What's the difference between a bad hoarder and a good hoarder?

A: There's a difference?

All joking aside, the difference between a good hoarder and a bad hoarder is that the bad hoarders stop giving a darn and let the entropy take over. Much like diabetes management, this turns out to be a disaster. Anyway,in the eyes of the world, hoarding is a horribly slovenly,disgusting thing and I'm not contesting that it can be just that you have to have lots of energy to hoard. But post a picture like this:


Or:



Of your nicely organized, excessive amounts of diabetes supplies and people respect you for being all set for the Acopalypse or anything else that can come your way. Not "you have too many supplies to use and you really should be giving it to someone else." Here's what I think: hoarding supplies is not a bad thing,unless you hoard so much that your stuff goes out of date and you have to pitch it. If you have a generous insurance,absolutely take advantage of that, and if you want to help someone else out that is completely your call. No one should make you feel guilty for that decision, though. I personally would rather someone else can use it if I cannot. So yes, I am a hoarder,diabetes supplies included. (Made worse by a serious couponing addiction.) The only thing bad about it is lack of order,which can happen quickly,& which will be a life long struggle against. I certainly don't want to live in a nasty germ infested house. If you come to this house, you will see diabetes stuffs and baby stuffs and diet coke/juice stuffs in excessive quantities because that's how I roll. (My dream is to live in a self-sufficient farm somewhere with a generator and several deep chest freezers and have the time to garden,can,& all of that. Which I don't,right now.)

So yes, I am a hoarder,and yes,the basement is the disaster area(not to the point of rotting things,mainly a disorganized thing) in our house..but that's why yard sales were invented,to periodically plunge the madness. We all have our "things."


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Monday, August 18, 2014

Dear Fellow PWD


Dear Person With Diabetes,

I am you. I have lived with this disease for almost 16 years..I have highs, I have lows. I know that this struggle is very,very real. I hate it,as you do. I know that it doesn't lend itself to "control." But I need to tell you something, the rest of America seems to be a bit confused on all things diabetes.
(No, insurance does not always cover "necessities." Grrrrr.)
We, the people who actually sometimes give a darn,know things. We know that strips can be wildly inaccurate, we know that it's entirely possible to go from 80 to 30 in less then 15 minutes, we know Your Diabetes May Vary. We know the glycemic index of various foods, we have a running IOB number board in our brain & we know that diabetes rarely,if ever, makes sense. We know that exercise can send you high or low and that sugar saves lives. We know that you can follow all the rules,live in perfect A1c Land,& still develop complications.And since we know all these things,you'd think that health care providers would be simerally informed, right?

Nope. Most of the people in this world(& this includes HCP) don't know jack sprat about either type of diabetes. And while that's to be expected of Joe Public,it's really not saying much for those people who should know. A long time ago, I had a bad hypo & my parents wanted to know why. Nobody could give them that answer,& so it was that the "why" became "my fault." It was on that day that I discovered that doctors don't know everything,and expecting them to fix everything just ain't gonna happen. A little piece of your soul dies that day,the day that you discover it truelly is your gig,and it's never going to be perfect. So,perfect. What does that even look like?I think so many doctors and nurses paint an unrealistic picture of that..if you take insulin and eat carbs,there will be highs and lows and expecting anyone to manage that on 3 test strips a day is just plain idiotic. I want to tell you to be your own best advocate and FIGHT for what you deserve, but realize the universe is out to make that very difficult. From nurses who don't understand diabetes at all to the server who gives you sweet tea, not diet, none of this is going to be easy. But this much I promise you, you are not alone. Join a Facebook diabetes group. Get a good pumping book, get a CGM,get a consultation with a CDE. Ask. Absorb. Learn.

     We are here for each other.

Wednesday, July 30, 2014

Owning the Number



" This your number. Now own your number."

That's what TV extreme weight loss guru Chris Powell tells each of the people stepping onto the scale for perhaps the first time in years. They are scared and ashamed. They cry. And they hate,hate,hate their bodies and themselves (and him)and that life could get to that point.

But that number is a starting point in their journey,and they take that number and work towards making it lower. They must feel like it's impossible and sucky and there are a thousand million reasons (this is sounding so,so familiar...I am so the Queen of diabetes excuses)WHY their weight is 300 lbs but Chris doesn't take that as an excuse not to try. And I feel like that is where I am,it's the 4th worst a1c in my life.(I think it was pre-pump that I had an a1c this high) The thing is,it is just a number and I know it doesn't define me but I am A. angry about it and B. embarrassed by it,and C. it can't just stay there. Yay for the equivalent of an 400 lb blood sugar. (The shame is still there,in society,and with those of us who try to give a darn.) My Endo appt passed with zero judgement on the back-up Endos part(she acknowledged it,and we "need to work on that") but the entire appt was spent on other things. It was not the horrible session I thought it would be.(and I very much appreciate those of you who posted encouraging stuffs on the Facebook. Thank you.)

Stepping on that scale and taking ownership of that number still sucks though.(as does the actual work in lowering it)

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Friday, July 25, 2014

A Matter of Spine

Last week, I went to the chiropractor..despite my feelings that they are kind of snake oil medicine people.(one would think that they'd be learning something during those 4 years...they are "doctor" after all) But anyhoo, I went, because I have been ignoring my back for years..in hopes that it would just eventually magically get back in shape.(This is really NOT a good idea, much like ignoring your teeth and never getting to a dentist is..problems just cascade from there.) But I finally decided that if there were a chance NOT to have to live the remainder of my days with shooting,burning pain..well,it was worth a shot. Years ago, I had X-rays taken that showed a lovely little bone spur on L1-L2..and at one point, I tried a cortisone injection to help.( I had a job where I carried heavy stuff around all day in a warehouse. I had this job for 7 years. You can bet I'm kind of messed up from it.) That injection helped, but the pain came back. In (later)pregnancy, I'd wake up every 2 hours (during the night)to readjust/get some feeling in my numb legs,pee,and check my blood sugars. Now, I'm at the point where I'd really like to improve the situation before it gets worse,so off I trotted to the chiropractic office. I watched a bunch of boring stuff/read some boring flyers with such grandiose statements as "restoring the peace and harmony of your body" and the chiropractor have me a physical exam/did an X-ray. On the next visit, he plopped my X-rays up and gave me an X-ray 101 lesson and had me tell him what was going on.
Which was:
-L1-L2,still messed up. But it isn't fused,and there's still some real,possible hope that chiropractic therapy will work.(it's a sort of a level 2 out of 3 scenario) If it's fused,nothing but surgery will help.
- I have a genetic condition called Facet Tropism Syndrome. (Genetic..I got it from my dad.)It's when your lumbar disc decides to develop like a thoracic disc. As you can imagine, it's not good..and can put you at risk of a herniated disc.L5 is the tropcated disc. Because of this, I naturally lean towards one side..towards the other is difficult. And it looks like I've been through "trauma" in some point during my life.(my hip is out of alignment) (Who hasn't been though trauma..but I digress) That required TWO signed forms absolving him of any fault should my disc herniate during treatment. All of which is hard to hear because I don't know how much I can expect to get better, and whether something will rupture but I know I have to do this now, for me, whatever the risks. I don't want to be living in a wheelchair in 10 years. I want to be as healthy as I can. So I will be going in 3x a week,staring next week. I hope it helps the pain and the numbness.(my left leg has noticeable strength deficiencies compared to my right.)

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Tuesday, July 22, 2014

Summer Dayz

Still here, still kickin.' Summer is flying by..and we still haven't made it to a beach. We have made the annual "Trip to the Zoo" and the "Trip to the National Aquarium" though. (During the three weeks that my MIL came to visit.) Whereas last year young J wouldn't even look at an animal, this year he got more into things...petting the goats at the petting zoo, pointing to the birds, and baaaaing at the goats. He is still a toddler,and would far rather run around (sans protective hat) screaming "Runnnnnn" at the top of his lungs but it's nice that he's actually interacting more now.

I finished up a summer course to requalify for the nursing program,& I'm #125 wait listed for the fall.(aka don't count on it) Its ok though,because I actually am enjoying not having to get up insanely early & spend all day on the road before crashing into bed. I will get into the program in either the spring or this fall.
How's it going with you?

Wednesday, July 09, 2014

FFL: Touching the Elephant

There's this common misperception that CWD friends for life is just for kids with diabetes,and their families.

But it's so much more complex then that. FFL is many things to many people,depending on your social 'sphere.

If you grew up with it,you are pressed into service for free labor.(as a young adult)

If you are a sponsor,it's an excuse to go out with your buddies at the end of the day & unwind at the hotel bar.

If you are in the DOC (blogger,etc.) it's a place of great support & one of the few places where everyone else is just like you.

If you are a parent, it's where you find support,and knowledge,to help you in your fight against this disease among 1,236 other parents who really GET IT.

If you are a kid with D,it may be the place where you find your first friend with diabetes.(& if you are a sibling,you can sound off about the stress of the family dynamics)

If you have celiac,it's one of the few places that you can eat from the buffet and not have to worry about gluten contamination.

If you are a presenter,without diabetes yourself...you are probably laboring under the assumption that it is for kids with D. Well,it is,but it's more then that. It's a place where the famous and the non-famous rub shoulders,where doctors and grocery store cashiers eat the same special buffet rubbury eggs, where it doesn't matter who you are or how much money you make..the power of the green wristband unites us all. It's a place where you
can laugh hysterically over a 306 mg/dl,where you can count on someone always having a needed diabetes supply,where you can drink diet coke with wild abandon at midnight and compare Dexcom graphs with friends.

I didn't go to FFL this year,for the first time since 2006. In 2005, when I went for the first time, finding that niche to fit into was a challenge. (The experience can be a little lonely without friends to hang out with. And yes,you are surrounded by 4,500 people who "get it"who still would rather do their own thing.) In 9 years I've felt like I've seen so many of the sides of FFL..I have volunteered with the teens,babysat 4 year olds, been with the bloggers, gotten to know many of the moms of CWD,seen the same sponsors year after year. I guess the point is,FFL is so much better with a friend/s.(And people who leave you crying at the gate of Disney to get back to the hotel on your own are probably not your friends.Know who your real friends are.) All of which has been an incredibly rich experience,& mostly good. (But I think every lonely soul who ventures to FFL on their own needs an Dbuddy or something so they don't have to feel alone.) I think a lot of people don't come to FFL because they don't know anybody there.

I don't think I'll ever understand all that FFL is,just like the blind men couldn't grasp the whole of the elephant..this green,orange,and yellow arm banded elephant. I see life through the view of an adult T1,blogger,married,with 1 child and a lover of Disney (& any excuse to go there that I can.) There are so many perspectives at FFL and that is the beauty of it.(it's just sad that more people never move beyond their own.)


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