Tuesday, September 23, 2014

Falling Back

Fall has long been my favorite season,(new tv shows,all things PUMPKIN,leaves,cool weather)& it's finally here.(the summer wasn't too bad but I'm still glad it's fall) it never seems to last long though,you blink,& it's 20 degrees F outside and though technically still fall it feels like Winter...long,long,winter. According to the forecast it's going to be just as cold and snowy as last year if not more so. Fall feels like a last chance attempt to prepare for the winter,and that means A.getting flu shots B.preparing for the inevitable sick days.

I am not a very cheerful sick person. My toddler has a better immune system then I do,because while he may get a few sniffles I get the all out immune system war (usually respiratory) and fluids just seem to ooze from every single pore & tastebuds stop working & my head feels like an anvil. Thankfully,it's just a cold this time around but I can tell you that if I were a single parent there's no way I could survive. Hubby gets home and I can crawl back into bed and stay there for the next 14 hours. Oddly,it's always my toddler who gives me these colds. I don't think the flu shot will do anything for me,I'll still end up getting the flu at some point because I am just that awesome. It protects me from my family I guess.(that is the hardest thing about being a parent IMO,the world never stops when you get sick)

Other then that,things are going ok. The NightScout project has been giving some pretty solid,stellar blood sugars(& hopefully one I can get back to when this cold passes). I don't know what it is (new device love?) but I do know it is doing awesome things for my a1c.
 I am going to join this fitness study at the local gym. And my sessions at the chiropractor are showing positive results (increased leg strength,less muscle tightness) although will need a back MRI that I am currently fighting the insurance company to pay. They don't want to do it unless I first go through X months of therapy with no improvement or have to have emergency surgery.People,I have diabetes,known high a1cs AND a messed up X-ray what's there to debate?(I would think that would be enough for them) Funny how insurance would rather pay for surgery then a diagnostic exam. So there you go.(on the plus side,since I met my deductible early in the year my chiro visits and all RX's are free for the rest of the year.)
I also joined a church(first time,ever,commentment issues here) and we promptly got a letter encouraging us to enroll J in the 2 year old class. First time went about as well as you can imagine.(20 minutes..they were like come get your kid NOW) 2nd time they cancelled it,unbeknownst to me,so it was turn around go home) It is fairly annoying that they don't have a room where special needs kids can go. At 2,my child is still comfortable in the nursery and yet they expect him to sit at a table & obey a teacher. That's really not happening,he will only sit at a table to eat food. Otherwise he loses interest quickly & runs off. They don't seem to grasp this concept,and think that he will get used to it.I know it to be a bad idea & he is really not ready..combine sensory issues with a anxious child & you have that. I want him to stay in the nursery another year,they say no way..they can work with us and he cannot go back to the nursery. I don't mind sitting with him but I know it will be ineffective and they'll probably send ME to parenting 101 class because they'll surmise that the obedience and other things are somehow my fault. I'm not saying some of it isn't,but I am saying I'm 2.5 years into this journey still trying to figure my child out and if you want to judge me come live my life for a week. I only wish I had more solid answers.(FTR,my mom,who had six kids says J is like three toddlers in one..a very high energy kid. And the state behavioral therapist says he's the most challenging kid she has ever met.)It will probably end in them saying "control your child better" and that will be that,won't be able to even attend church because of no child care. It hurts a lot,because I didn't join this church not to be able to even go to it and I am going to let people know that this is not being helpful. I am going to fight for my child to go back to the nursery if that's what he needs,I'm tired of everyone's else's kids fitting in all the right neurotypical slots and nothing being available for the other kids..where are the other kids? Do those Parents just not even come to church? I can't see how letting a child stay in the nursery awhile longer is hurting anyone.

We also went a beach..and J totally loved the water. (And sand) No fear,this kid!! It was very rocky/shellish/rough on feet so I think the next time needs to be at a whiter,smoother one even it means a longer drive.

So that's how my summer went..how was yours?

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:


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)

-Posted using BlogPress from my iPhone

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?