Text Support

D-Packages that Bring a Smile



made my day

http://www.glucolift.com/

I may or may not have popped a Wildberry myself.

Lenny joins our family thanks to Kim at textingmypancreas.com and

her fabulous GiveAllTheThings giveaways. 

Now I can practice inserting Silhouette infusion sets! (manually) 

I can do it.  I can do it.

Thanks Kim!



used with permission

I won over at Diabetesaliciousness, too! 
Love me some pharmacy grab-bag.   Can't wait for that to arrive!

I attribute my winning directly to karma.  I sent some test strips and batteries when Kelly called

for help for D-folks affected by Hurricane Sandy.  Six days later, I win!
Thanks Kelly!

Apple in My Eye

After doing some long, painful, kill-me-now, handing out some serious hurt if one more person parks their cart in the middle of the aisle Christmas shopping we stopped for a bite to eat.  I caved on the apple juice and Cheetos because "everybody at camp drinks apple juice" and I was tired.

BG before: 150 something

BG three hours after: 130

"IN. YOUR. FACE!" so says the apple juice according to Roo.

Sigh.  I'll hear about this for years.

In other news:
Went to Roo's band and chorus concert and upon return learned that Pink had a low of 56 shortly after I left.  She was home alone.  So proud of her treating and keeping herself safe!!!  But left my tummy a little sick.

Here's some insulin and have a nice day.

I have a friend whose spouse has Type 2 Diabetes.   Just recently Spouse experienced very elevated blood sugars and her primary physician prescribed NovoLog Mix 70/30.  She was told to inject insulin before breakfast and supper and to check her blood sugar 4 times a day.  She is to call in her logs and the doc would make the appropriate adjustments.  That's it.

Well, I'm sure that wasn't all of it but there was no emergency training for my friend, no more detailed training how to treat hypoglycemia and no Glucagon prescribed for Spouse.  No set number of carbs to eat.

I'm not familiar with Novolog 70/30 but I looked up that the 70% is intermediate insulin and the 30% is Novolog.  I don't understand how there is set amount of Novolog (fast acting) involved here but no set amount of carbs.  And just for breakfast and supper.  No lunch coverage?  Does the intermediate peak cover lunch?  How can she tell if there are no checks at lunch?  So on a carb heavy day she has to live with high blood sugar or for a no carb breakfast she risks going low? 

And let me tell you, I'm shocked (and disgusted) about insulin being prescribed with no emergency education or guidance treating a low.  (I believe they were told to use glucose tablets when first starting oral meds but nothing additional, as far as I know, when starting insulin.)  Shouldn't something like Glucagon go hand in hand with using insulin?  Or at least how to use a gel or rub honey on gums or...anything?  Are my expectation too high?  I don't think so.

We have only ever counted carbs so maybe I just don't understand the other ways. --No.-- I don't accept that.  An insulin, partially containing a fast acting insulin, was prescribed to a patient without any explanation of its duration or peak or how to match carbs to the insulin.  Was there any training on how to deal with insulin and sick days?  No emergency guidance.  Were they told to always carry a fast acting glucose with them?  Cripes, now I'm doubting everything.

I know not all patients are the same and some would want little information and just follow doctor's orders (or not) but I don't think this applies here.  I feel they are being ripped off.  Shouldn't complete education be the default?  Wouldn't this offer the patient a chance for the best health they could achieve?  Wouldn't this save everyone money in the long run?  And...it's INSULIN for crying out loud.

Waiting

They don't tell you that diabetes management includes a lot of time suckage.

waiting for a number

waiting at the pharmacy

waiting in the doctor's office

waiting on the mail order

waiting for a carb count

waiting to eat
waiting for the pump prime

waiting for an update text

waiting for better tools

waiting for Java to load on Carelink
waiting for uploading
waiting for my eye twitch to end

waiting for sleep

waiting for new Netflix episodes

waiting for the emergency we fight to avoid

waiting for a lower number

waiting for a higher number

waiting for the chest rise of a sleeping child

waiting close by

waiting fighting for a cure

Only relevant to this post because of the title.

And I like Green Day.

And it's my post.

Pump Break Reflections

It looks like Roo is staying with MDI (multiple daily injections).  Who would have thought?  Not me.  I threw out the idea of slapping in a pump site over the holiday just for meal boluses and snacking.  She thought that was a good idea but even opted out of that when the day came.  It partially has to do with her entire Thanksgiving meal consisting of mashed potatoes and pie, so not a lot a snacking.

Here are my reflections so far:

• I love that there is Lantus swimming through her at all times. 
• I have realized I think about a disruption of insulin more than I thought I did when they are pumping.
• I miss the pump tracking insulin on board
• mostly checking at ~2.5 hours when fighting a high to keep the insulin flowing without having to solve an advanced math problem.  (really need to find an app for this)
• I miss temp basals!
• Have had to relearn post exercise lows.  Holy moly - weight training on Lantus means a snack and an addition night check for sure.
• I suck at logging
• I don't like that we had to go back to having a discussion to include ALL the food she might possibly want for a meal to keep it to one shot.  Second helpings are easy using a pump!
• It was a little adjustment for Roo to carry the insulin pens.
• When both were pumping there was no throwing out 100s of units of insulin because it was past 29/30 days. 
• I must not forget to order more pen needles!
• The injections are not as traumatizing to her skin as the infusion sets.
• Roo's likin' it.

Oh, and where in the hell house do you stash a $7000 medical device? 

By the butter stamp, of course.

Latest Snack Fad in the House



trail mix to order



What I Meant to Say

Sometimes my own stupidity truly amazes me.

Over Thanksgiving I was talking with someone about diabetes and the other person, let's call them Pam, told me her doctor had asked her to check her blood sugar once a month just to watch out for high blood sugar.  Pam is probably slightly at risk for Type 2 but has other health issues so I think the doc doesn't want diabetes sneaking in.  I asked her when the doc asked her to check and she told me once a month.

Now, I don't know jack about Type 2 diabetes but something happened to me.  I got really pissed off.  I asked Pam if the doctor had told her to check first thing in the morning or 2 hours after eating?  Nope - just anytime, once a month.  I told her she should check at those times.  She said the doctor said anytime works. 

Here it comes.....

My absolute best moment of spreading diabetes education...

So exciting....

Ready?

I said:

"You should listen to me about diabetes. (finger pointing repeatedly to my chest)  A lot of doctors don't know much about diabetes."

I. AM. A. MORON.

What I meant to say was:
"That's really great your doctor is watching out for diabetes!  You might get more information from a fasting reading or maybe two hours after you eat.  Readings from those times could give you an earlier indication that something is going on.  Maybe you could ask your doctor about that.  And if you do see some high numbers be sure to ask for an A1C test and see an endocrinologist.  They would be more experienced with diabetes.  Diabetes is nothing to mess around with."

That's what I meant to say.
(and have since)

Will They Remember the Zombie?

I have to remember the girls don't see things the same as I do.  The girls' memories are not what I think they are.

The other day Roo and I were reminiscing.  We were recalling our weekly trips to the library when the girls were younger.  I love our library.  My memories go to the quiet and the browsing of the books in the small children's room.  How the girls always started reading the books instead of putting them in the check-out pile.  Sometimes we would be in a rush and sometimes we would have time to sit at the mini table and chairs together and read a book. (I would bang my knee every time!) Then we would head home with a book bag so loaded the strap would cut into my fingers.

Roo only remembers how she wanted the prizes. That's right...the prizes.

What?  That's it?  The prizes from the summer reading program?  Not the warm fuzzy of the library and the books and how they smell and the mommy/daughter time? 

In regards to diabetes, I see myself as a mother keeping her kids healthy and safe. I would hope my girls would remember that I took good care of them and readied them to be adults with diabetes.  I'm afraid Roo is going to remember me, post diagnosis, as a sleep-deprived zombie obsessed with diabetes.  Some comments have come up indicating that she does not like that I check them at night resulting in my loss of sleep.  She even has commented how the numbers have been good - "We'll be OK - get some rest."  There have been some sighs if I'm seen reading a book or website about diabetes.

I think I'm successfully integrating the daily management, reading, night checks with all the other life stuff but I think she sees a different picture.  What she sees now will build her memories.  I don't want her to remember the zombie or remember how she worried about the zombie.  Or the unspeakable...if she blames herself...how her diagnosis of diabetes created the zombie.

I'm not willing to give up what I do to educate and keep Roo and Pink healthy.  Do I hide some of it?  I kind of want them to see my hard work and maybe set that as a base line for the effort they'll need to put in as an adult.  Or maybe that will make them feel totally defeated later when they go through a burnout stage?!  It would be good to talk a little about it with them but they hate talking about diabetes.  Maybe I should just sit them down for a very short chat.  But then they might clam up even more.  How am I supposed to know?!  Time is moving too fast.

I guess I can only reassure them (but keep doing what I'm doing) and increase the warm fuzziness of life and hope those memories stick.  Instead of saying "Do you remember when you had that geyser that shot clear across the table when lancing your finger?" (which I thought was hysterical) I'll say "Do you remember that time I thought I lost you at the library and you were sitting on the floor reading, hidden between the book stacks?

But then again, at the start of this I said "the girls don't see things the same as I do" so when Roo says "get some rest" she probably just wants to get rid of me!

Thirteen years

Today we celebrate PINK as she turns 13! *sniff*



cookie over cake



tweens/teens play Twister?



did you say front or back right foot on yellow?

 

bday excitement + presents = 51

the before picture

make it a good wish, baby
(I know what I wish)

A Night in the Life of...with a Stubborn High

409 at 11:00pm.  Where did THAT come from.  Why, oh, why?  Hands clean.  Correction through pump.  Temp basal for 30 minutes at 150%.  I think it should be more but don't change it.  I don't know why.

I watch some of The Walking Dead.  Very gory.  Repetitive.
Chased by zombies, smash in zombie heads, talk about life with zombies, repeat.
I feel stupid because I didn't figure out she was in the barn the whole time.

The check two hours later yields a 364.  Correction through pump.
I briefly think about emptying the dishwasher but finish off The Walking Dead instead.

Another check at 1.5 hours gives up a 341. I should probably change the site but the last time I changed a site in the night Pink didn't move a muscle but her eyes POPPED open.  Like a close up shot of the villain of a suspense flick whose eyes fly open at the last second to let you know he lives to do evil another day.  Or like Bella.  I decide to give an injection and add a half unit. Pink has fallen asleep in her jeans so I fish down her pants to her leg site and fumble blindly to unhook her site.  Sites that are not parent friendly.  I hang the tube off the side of the bed and bolus the carpet so the pump will continue to keep track of the insulin on board.

I double check the syringe for the correct amount.  It's 2:30am.  I triple check.
Walking down the hall with the loaded syringe I hope I don't trip and impale myself with a syringe holding 2 units of insulin.   I check for ketones and think how friendly the ketone meter is to beep at me when it has enough blood.  No ketones.  I dig back into her jeans to make sure I connected to the current site and not an old one she still might have hanging out in there.  

I debate whether I should catch an hour of sleep or just stay awake.  Awake is safer.
I pass the time by starting this post and spend several minutes trying to figure out how to spell "yield". Yeld...yeald...yeild...does not compute.  Maybe awake is not safer.

It's 4:30 and the dog looks at me for a solid minute trying to determine if it's potty time or not.  Not.
342.  Dammit all to hell.  Site change.  Grumpy Pink.  Temp basal.  Cancel temp basal because I moved the site to her tummy and she usually gets zippity-do-dah insulin action at the start of a tummy site and I need to lay down and am scared I won't wake up to check.

When will I learn that numbers that high in Pink need aggression?!  I could have had this knocked down by now. 300s all freaking night.  Poor baby girl.  I hate nights like this but I won't be defeated.  Good night morning.

MDI Day 5

It's been 5 days since Roo has gone back on MDI (multiple daily injections).  It's been...OK.  Numbers are still too high.  More 200s than 100s.  I tend to be cautious because 1. she spends so much time away from me now and 2.  She's a I-say-in-the-most-loving-way flighty teenager and 3. I'm a big fat chicken. 

She has been on the run constantly and grabbing food here and there.  Football is finally done and now the musical is done so she should be able to go back to some kind of eating schedule.  

no pump under there

There have been some struggles with communication. It's been a constant stream of reminding and preaching about remembering when she last bolused and not correcting before 4 hours.  Which usually doesn't go over well with the everyday normal level of teenage contrariness.  Also piecing together a log from a couple meters, my brain d-mush and her brain teen-mush has been interesting. Tonight was a good evening good mood, little homework, full belly and I think we made some progress with talk of using one meter if possible, maybe a little notebook in her insulin case and supper bolus change decision made TOGETHER.

Today I mentioned this tool that shows the time since your last bolus in the pen lid and she just gave me her crooked grin and said "Leave it to you to find something like that."  I need a little more love than that! 

I have upped her Lantus one time by one unit because she was just constantly high.  which is absolutely appropriate for only 5 days in.  please send patience That gave us only a couple in range numbers that hardly count at all.  Tonight we moved her supper I:C ratio from 1:20 to 1:16.  I would like to get the Lantus set before making changes to I:C but after supper she has been so high it blew the whole night after night after night testings.  Yawn  That coupled with trying to dig my way through 10 layers of clothes and a robe to do a correction injection at 3:00am gave me motivation to get a good bed time number.  Tonight just might work out.  She was actually home at a decent hour and she had a 2 hr after supper number of 134.  I got a good amount of protein in her so hopefully she has enough food on board not to go low.  Fingers crossed.

Update:  She did not go low and overnight numbers were 145, 146 and 180.  Getting there! happy dance

Endo and Pump Break

Endo today.  It was OK.  I scored 2 boxes of blood ketone strips!  Alone worth the trip!  Pink's A1C was the same as last time which is awesome.  We talked about her stomach problems.  Then we talked about them again.  And then the Endo asked her about them and Pink said "I'm fine.  No problems."  And the Endo replied "Must have just been a rumor." and we proceeded to talk about it AGAIN.  That plus talking with the CDE about counseling resulted in a grumpy and mute Pink. 

Roo's A1C skyrocketed.  Both Roo and I knew we had lost all sense of diabetes order the last couple months and it freakin' showed.  This was really the first time we kinda blew it.  It sucked.  And worse, the CDE uncovered many missed breakfast boluses!  I'm a loser.  Roo leaves before I'm up. Her dad tells me she is always running late and in a rush.  I should have been checking the pump history for breakfast boluses.


detached



So in the middle of all this diabetes management chaos Roo wants a pump break.  God - it's like starting over again.  Help me.  But she was so happy today when she disconnected!  No pump and no infusion set anywhere.  I keep telling myself that this is what we both need to get back on track.  But....eeewww.  The pump did everything for me (except remind my daughter to bolus for breakfast).  IOB, I:C, all the math, ISF, record keeping.  I told her she needs to write down everything but she doesn't think she needs a little notebook.  Uh...yeah..oh Lordy, makes my gut churn.  It seems so different than two years ago when she was mostly near me to now when she is mostly away from me.

abandoned



We decided to start with the pump settings exactly.  Her total basal on the pump was 9.75ish so 10 units of Lantus was injected at noon today and she ripped that set out 5 seconds later.   I've liked the thought of having some Lantus going on in there to protect against DKA.  We talked about going untethered and even doing shared long acting/pump basals.  But she wanted to be free of everything.   

Right now my mind is fixated on if she has enough snacks with her, math errors and how her night time basals on the pump are half of what her daytime basals are.  No custom hourly basal rates now. 

Tumbling

BGs hardly below 200 all weekend.

Endo this Wednesday.

Halloween costumes not done.

Family coming next weekend.

Dryer breaks.

Only two loads started.

Probable toilet removal to access damn dryer.

10:46pm according to the Maytag doggie pendulum.

Poor pooch getting nowhere.

Just tumbling.

279 and 310.

Can relate to Maytag mutt.

Looking Back: 504 Denied Part 2

Looking Back posts are my effort to journal the diabetes times

that have gone before the start of this blog.

I would like to first state that our school district is awesome and they have never been anything but supportive and active in wanting the best for my girls!  This situation basically boils down to understanding the law.

And with that...when we last left our heroine she was fighting to the death to save her cub from the evil, oppressive establishment...

The school was going to deny my request for a 504 for Roo.  I was disappointed because now I was going to have to show a school district that they were wrong about something they had probably done hundreds of times for decades.  Well, at least in regards to diabetes.  Crap. 

The law in a nice package:
Roo is entitled to a 504 Plan because she has a physical impairment that substantially limits a major life activity, that of a major bodily function, her endocrine system.  She is to be evaluated without regard to the ameliorative effects of mitigating measures such a medicine, her insulin.

Translation:
Roo's got a busted pancreas that Congress says limits a major life activity and you have to evaluate her as if she doesn't take insulin so give her the 504.  Or you could say - take the insulin away and she would definitely be limited in a major life activity - LIFE! - but I don't think you can link "life" back to the amendment as neatly as you can the endocrine system.

I tried sending an email quoting the law and sending links to helpful sites that spell out why kids with Type 1 Diabetes are entitled to a 504 plan but I doubt they really read it.  It was going to take a 3rd party and I caught a break when the the school themselves sent me an email with just the contact I needed:

Mrs. Laura

It was a pleasure meeting with you last night, and whereas we disagree an Roo's eligibility for a 504 Plan, we look forward as a District to serving all of her needs, both medically and academically, through a Health Plan.

I read your quotes below from the Ed.gov website, thank you for including those.  At last night's meeting, we all agreed that Roo does have a disability, in this case diabetes.  However, when going through the eval, and please correct me if I'm wrong, we also all agreed that Rhea's disability does not "substantially limit one or more of her major life activities."

   >> Only when BGs are good.  Obviously I did not make it clear in the meeting.  Probably has something to do with the beeberbeeberbeeee. (fingers strumming lips and not this) 

In fact, the highest we came on the scale was "mild".  Because of that, and her current and history of grades (all A's), and feedback from her current teachers, we determined that Roo does not qualify for a 504 Plan. 

   >>Just because she is a good student doesn't mean she doesn't qualify

However, <oppressive establishment> will be implementing a Health Plan for Roo that will contain, at your request, a few academic accommodations (extra time if needed, etc.).  Plus, as you also said, the teachers in the District, and the Nurses, are already doing a great job of working with Roo.

  >>SO TRUE!

 Your concern, and it is valid, is when or if something should worsen with Roo's condition, that she will not be penalized for that.  I want reassure you again that will not happen, whether she has a 504 Plan or not.  What I took away from the meeting was that you're not disputing any of that, you just feel Roo is entitled to a 504 Plan based on her diagnosed condition of diabetes and the possible implications that could have.  We feel as a District that we will be able to best serve Roo through a Health Plan.

All of that being said, and as promised, I would like to give you some contacts that you may want to explore if you'd like to appeal the decision that has been made by our District. 

<insert contact at the state Department of Education>

<other stuff telling me they are denying the 504>

Sincerely,

Mr Counselor

and he cced the Dept of Education.  Sweet!

We set up a conference call with an attorney from the state Dept of Education and he basically repeated the law about mitigating measures (he obviously didn't want say directly that all Type 1s basically auto-quality) until the school understood that there was no other choice but to grant the 504 because without insulin, Roo's evaluation would have a completely different outcome. 

Poor guys though. It's never fun to eat it. I'm just thankful that they LISTENED. Some schools don't.  It was the mitigating measures that was throwing them I think.  They were pretty worked up towards the Dept of Ed that it has not been made clear in their training or other means how to do this correctly. It also prompted the Dept of Ed legal rep on the call to promise an update/refresher correspondence to all the districts.

The 504 Plan was granted and I must say that I did have a moment after talking to the Dept of Ed where I wanted to shout "Power to the people...with Type 1!"


Resources that learned me everything:
http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/legal-protections/section-504.html
http://www.diabetes.org/assets/pdfs/schools/adaaa-eligibility-for-504-coordinators.pdf
http://www.diabetes.org/assets/pdfs/schools/adaaa-faq-march2009.pdf
http://www.childrenwithdiabetes.com/d_0q_000.htm
http://forums.childrenwithdiabetes.com/index.php
http://www2.ed.gov/policy/rights/guid/ocr/disability.html
Real life support from ADA.

The Law:
STUDENTS PROTECTED UNDER SECTION 504
(I  used have a cool link for this but now it goes to a scary site with huge list of bills)
Section 504 covers qualified students with disabilities who attend schools receiving Federal financial assistance. To be protected under Section 504, a student must be determined to: (1) have a physical or mental impairment that substantially limits one or more major life activities; or (2) have a record of such an impairment; or (3) be regarded as having such an impairment. Section 504 requires that school districts provide a free appropriate public education (FAPE) to qualified students in their jurisdictions who have a physical or mental impairment that substantially limits one or more major life activities.
Congress also provided a non-exhaustive list of examples of “major bodily functions” that are major life activities, such as the functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions. 

Here are the sections of the The Americans with Disabilities Act Amendments Act of 2008 that apply to Roo:
   Sec.3 Definition of Disability
        (2) Major Life Activities -
             (A) In General  -  "...major life activities include, but are not limited to, ...learning, reading, concentration, thinking."
             (B) Major Bodily Functions. -  "...a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the....endocrine,...functions." 
        (4) RULES OF CONSTRUCTION REGARDING THE DEFINITION OF DISABILITY.—The definition of ‘disability’ in paragraph (1) shall be construed in accordance with the following:
             (E)(i) The determination of whether an impairment substantially limits a major life activity shall be made without regard to the ameliorative effects of mitigating measures such as—
                 (I) medication,...

Looking Back: 504 Denied Part 1

Looking Back posts are my effort to journal the diabetes times

that have gone before the start of this blog.

Last year Roo entered high school and I thought it would be a good idea to get a Section 504 Plan in place to protect her academically.  Because Type 1 Diabetes is considered a disability under the Rehabilitation Act of 1973 and the Americans with Disabilities Act we can request accommodations for her to ensure an equal education to her peers.

The following is an excerpt from the conversation with the high school counselor to request a 504 meeting :

Counselor:  A 504 is not given automatically. We will evaluate Roo and how she compares to her peers and then determine if she needs a 504 and if we will "grant" her a 504 plan or add academic accommodations to her health plan.

Me: <hesitate> Well she is a good student so I don't understand what you are going to compare to her peers. uh....whaaa?

Counselor: Most likely then she won't need a 504 and we can add an academic accommodation to her health plan.

Me: <silent> Uh huh. <nod>. Wellll...I'm interested specifically in protecting her if anything should happen during placement or standardized tests and testing and treating anywhere/anytime. oh no, he doesn't know he doesn't know

Counselor: Yes, we can put that in the health plan and you won't have any problems with the teachers and if you do then come and see us and we'll take care of it.

Me: <crickets> I see. When do you do your meetings? I'm pretty sure you can't deny Roo a 504. Why must you torture me? Now I have to do this and that and type up this and make calls. 

They evaluated Roo (which is the proper procedure) and a meeting was set.  The high school principle, the counselor, the nurse and myself were in attendance.  The counselor went over the evaluation and the results kept being she was doing fine, her learning is not being negatively affected by her disability.

Because I'm such a freaking blubbering idiot in public all I kept repeating was "but things can change quickly", "she's not negatively impacted only if her blood sugars are in range", "she is entitled to a 504".  I had a folder packed full of copies of the law but I didn't dare pull it out because everything I had gone over before the meeting was jumbled in my head and surely would come out of my mouth as "ummm...daahhh...beeberbeeberbee" (finger strumming lips).

They basically already had decided to deny Roo a 504 Plan because she is not "substantially impaired" in learning.  It's not about learning really and I did not agree and at least was able to make that clear.  They were trying to "educate" me and I was trying to educate them (ya know, by repeating my three phrases and never referring to my resources). It was calm but heals dug in on both sides. They even made a comment about they've run into this before but I was being nice about it. I laughed. I just said "There's no point in screaming...yet."

So I had some more work to do.

TO BE CONTINUED...

The In and Out of Benefits Enrollment

It's benefits enrollment time of year.  The last several years I've been able to roll over my current plan which makes it sooo easy.  No change of info at every appt, no making sure we're covered, no making sure everything is billed correctly, etc. 

This year they offer my same plan and  I just did my normal quick look-up for our pediatrician and endo to make sure they were still in-network and lucky I did....they are OUT of network.  And then it just got stranger.  Here is a list of medical providers we are certain/likely to use and whether they are IN or OUT of network for the NEW plan I have to switch to:

Local clinic...........................IN
Local clinic lab......................OUT
Pediatrician...........................IN
OB/GYN...............................IN
Physical Therapist (in clinic)....OUT
Local Hospital........................IN
Chiropractor...........................OUT
Children's Hospital..................IN
Children's Hospital lab............not found
Pediatric Endo.......................IN
CDE.....................................not found

The clinic is IN but the lab is OUT?  They did that just to mess with me.

Swinging and Singing

As a parent of a child(ren) with diabetes have you ever actually timed and counted the swings of your emotions in a day?   Just this evening:

6:00  spent - home from work
6:01  glad - see Pink's sweet face coming to greet me
6:02  concern - funny look on her face and she informs me she just treated a 58
6:05  alert - cuddled on couch waiting out the low
6:08  disgusted - no supper, no nothing done before I got home
6:09  empathy - Pink feels very bad and survival hunger kicks in
6:10  irritated - Pink developing major attitude with lows and highs
6:20  relief - Pink coming up and happily shoveling food
6:25  worry - Roo leaving to drive to school and musical practice with lots of dancing
6:30  disappointed - baseball on instead of Big Bang
6:31  numb - computer time and mundane household stuff
7:30  surprised - Pink remembers to take shower without reminder (Haaa-lle-lu-jah!)
8:30  slight alert - Pink not out of shower yet but have not heard loud thud of wet, limp body hitting shower floor
8:31  JOY - Pink singing in shower (I experience equal joy hearing littles singing on the potty)
8:40  happy - Roo home a little early - no problems
8:45  amused - Pink cuts her eyes at me as she goes to get her forgotten pump after I ask if anyone needs an insulin refill
8:46  heartbreak - a flash of their futures never, ever away from insulin sneaks in
9:00  miffed - Roo needs more money for two more freakin' school something-or-nothing t-shirts.
9:10  tickled -  Roo's ooo and ahh at the sparkly dresses on Project Runway.  She's such a foo-foo girl.
9:30 wasted - still have to test BGs and make plans for the night...UGH and pack a cooler for Roo's away football game tomorrow.

That would explain the urge to hide under my blankets sucking my thumb.

But then I would miss the singing!

Looking Back: Pump Start Day

Looking Back posts are my effort to journal the diabetes times

that have gone before the start of this blog.

May 4th, 2011

We're going to...(clap)...pump you up!

Two Years

It's been two years since Type 1 Diabetes came into our lives.  How do I feel?

I feel thankful. 

I feel tired.

And I feel...normal.  Yeah, normal.  Huh.  Who would have thought?  I feel normal.

I guess that's good.  My brain has reconfigured.  Reconciled.  It now has a dedicated diabetes thought process that runs continuously.  My stress cup has a reserved volume dedicated to diabetes so there is less room than before for other stresses.  But basically this is just what we do now.  I don't have to like that this is what we do now, and I don't, but for the better part of each day we just live our lives.  The good, old fashion, comfortable routine of life.

Two years ago I could not imagine that constant, unrelenting panicky feeling ever subsiding. The exhaustion.  The ever present certainty that I didn't have a freakin' clue what I was doing.  Really knowing what it meant to live day by day.  The fatigue.  So much fatigue I worried I would do something wrong and harm the girls.  The overwhelming urge to wrap my babies protectively in my arms and never let them out of my site*.  The worry.  The crushing, paralyzing heartbreak.

Of course these things are still around.  Some seem to spend most of their time hibernating and others just take naps.  Except the heartbreak.  I can't get the heartbreak to sleep but at least it mostly sits quietly in the corner.  It feels a lot longer than two years but here we are.  Our normal. 

My girls are here with me.  Beautiful.  Healthy.  Thriving.  Laughing.  Living. 

I'm thankful.


Roo and Pink



*sometimes used in place of "sight" when a d-mama's brain is not fully reconciled.

A Glucose Lick

Teenagers (at least mine) seem to only learn from mistakes and consequences.  Or if they hear the wisdom from a friend and not Mom.  But, man oh man, it is scary when those lessons deal with diabetes.  Why must they learn about managing diabetes through mistakes? 

How many times do you repeat yourself when it comes to diabetes behavior? 

Before they go out the door: "Do you have your meter, glucose, phone, do you have your meter, glucose, phone, meter, glucose, phone, brain, meter, glucose, strips, phone.  Keep your bag close, keep your bag close, your bag close, your bag close, close.  Put glucose in your pocket, in your pocket, on your person, in the Spibelt, in your sock, in your bra, right off stage, glucose, glucose, glucose!"  

pick your life-saving poison


Roo comes home from musical practice with "Guess what number I hit today?!"

Me:  I don't like this game.  400?

Roo:  58!!  (which is loooww for her.)

She had to leave the stage and there was only crushed Smarties in the bottom of her bag!  She sent a friend out to her car for more glucose!  I told her you should have been licking the sugar dusty bottom of that bag.  I had an image of a hanging horse feeding bag thingy or a salt lick.  A sugar lick.  I should hang a big old glucose lick around her neck.

And repeated: At least two forms of glucose and a medium carb before you go out the door.  Two forms of glucose and a medium carb.

What exactly is going on in those mushy teenage brians?  Please tell me!  

One good thing she said was that her friends got a reminder of how to help and one checked her blood sugar for her.  LOVE those friends!

Wordless Wednesday: 3 months x 2 = 5 feet

Holy cow, this silly picture won me a

Best of the 'Betes Blogs award for

Best Use of Photography!

Thank you to whoever nominated me
and to all that read! And a special thank you
to our dog for listening to me for once when I said "No!"

Jury Duty

I recently received notice I was being called for jury service. Who knew a little postcard could get my heart racing.  Of course my first thoughts were d-mama thoughts: I can't do this, what if something happened, how would they reach me!? And then I read the line that said something like "There are no phones or electronics in the court room so you might as well just leave them there phones in the car because you ain't gettin' them in."

Uh...hells to the NO!  I could not compute the idea of not being able to be contacted for the care or for an emergency for the girls.

Let's be honest.  I had no sense of civic duty.  I had no conviction of citizenship.   It was like survival and protecting my littles.  I had a split second thought of maybe chancing that my days would be cancelled when I called the night before but that was quickly and fully overshadowed by what if I was actually picked for a jury for the longest trail ever to be seen in our county, a la O.J. 

I called the county clerk to see if a medical letter would excuse me.  She replied, not so enthusiastically, "Well...we can't do anything about it if you have a medical letter."  Cool.

I called the girls' endo and asked if they could provide a letter stating I'm the primary caretaker of two children with a chronic illness and should be excused from jury duty. (Why do I always want to capitalize Jury Duty?)  They provided said letter.  Awesome.

I sent the letter from the doctor and my jury duty reply in to the county and received this a couple days ago:

Not a shining pillar of citizenship but I'm relieved just the same.

Progress

Yesterday Pink and I had a solid plan to get her back to school for even a short time.  I could see obvious signs of anxiety after being home sick for so long.  The departure time kept getting moved back further and further until we were past even the latest goal of 12:30.  All morning I was upbeat, "Positive thoughts!", encouraging, baby steps, but when it came down to actually going out the door she was doubled over thinking she was going to vomit. 

I pushed again.  I was determined to get at least one toe in that building yesterday!  She just needed to get shoved past that evil anxiety wall.  As much as I explained the anxiety that was happening she could not get past the wall.  I started to get really defeated and scared.  I didn't know what to say or what to do!  She was just crying as I was telling her she HAD to get her shoes on but she would not budge off the couch.  Pink doesn't cry.  It didn't help that she saw me get the phone numbers to the counselors I was referred to.  I was desperate.  Was I supposed to carry her? It was awful! 

For a second I gave up and said she could go back to her room to rest.  But I couldn't give up.  I wouldn't give up.  I joined her in her room and sat on her bed.  I looked at her and my eyes welled up.  I looked away to gather myself and said out loud "I'm scared."  She saw me crying and hugged me.  gulp

"I'm scared for you.  I'm afraid you are getting stuck and I feel a darkness around the corner.  I think you are afraid to go to school and have so much attention on you after being gone so long.  I think you may be afraid of not feeling well while sitting in class.  I think that the makeup work may seem overwhelming.  I might be way off but I think that is what is happening now." 

Pink was quietly crying, "I don't want any attention on me.  What would I say?"  heart cracking

Me: "I know you can do this.  It will be hard for only a couple minutes and then it will be no problem.  Today we will go in together after school and just talk to the teachers.  Just to get into the building.  We'll wait until all the kids have filed out and just you and me will go in.  I'll do the talking.  We'll only talk for one or two minutes with each teacher.  This is important."


Pink = bravery



She agreed.  I got her in the car.  We went and waited in the parking lot until all the kids were out.  Pink was quiet and stoic.  A good sign.  This means she is in her get-it-done mode.  As soon as we walked into the hall where the teachers were gathered they stop what they are doing and came right up to her exclaiming how they've missed her and asking how she is.  I held my breath but Pink pulled it off.  They barely mentioned any work, just supported her.  One teacher even waved her hand in the air "Don't worry about any of that work!"  Bless them.

Pink was great and as we walked out of the building we both were so much lighter.  I was so relieved!!  She was relieved.  She even said "I think I can go now if I need to go in late." 

I went on and on how proud I was of her.  What a great job!  Very brave!  You might say "Not so much" but I know exactly how she feels because I'm just like that.  Attention and social events give me anxiety.  Almost every day I have that same conflict in my head but being an adult I've built skills to deal with it.  Poor thing is just starting.  

I feel like I bumbled this really badly.  Somehow I could have made it easier for her.  I just don't know.  There was resistance today, almost backsliding but I could see that she knew she had to do it.  I give her all the credit.  And right now she is at school!

One of us is going over the edge...

Late one evening at work when I would have rather been home...

dammit

I don't know what happen to the sound in this video

but there's a scary Pennywise-ish laugh. shiver.

Probably just me losing it.

Come on, come on, comeoncomeon

Sigh.

"DONK" - exactly how I felt.

That's what I get for choosing the PB M&Ms.

P.S.  The above was several days ago.  I checked the machine today

and it appears several others have been playing the junk food slots.

vent

In true vent form I'm just going to type and not edit or structure.

Pink has been sick.  She has been to school two days in the last 2 1/2 weeks.  She has terrible stomach problems, pain-ish and nausea, in the morning so that she can't get out of bed.  It gradually gets better until she can eat her first BRAT food around 1:00-2:00pm and then by evening more normal food.  Then it starts all over again in the morning.  She always has had an icky morning tummy.  She prefers not to eat right when she gets up.  The last half of the school year last year is when it started to worsen but we could still get some food in her.  The summer she slept in and didn't usually eat until 10:00 or 11:00am so no problems.  This year it has been even harder to get food into her before school and then 2 1/2 weeks ago it was so bad she thought she was going to vomit and we are still in that state. 

Her BGs have been pretty good.  In the beginning I bolused 50% for food because I was afraid she was going to start vomiting.  She never did vomit but the 50% ended up perfect.  So I thought she really did have a tummy bug in the beginning.  A couple lowish numbers.  Then back to normal bolusing, Then high numbers with the start of her period and now today we are underbolusing again.  A little weirdness but nothing huge.  And no ketones.

We've been to the doctor twice, I've talked to them several more times, I've talked to the endo team, there's been two bloods draws (poor baby).  The doctor found a UTI.   All other blood work normal.  The second visit I asked for a Celiac test.  Thyroid normal.  The first antibiotics we had trouble staying on schedule because they would make her gag and make her tummy worse.  We switched antibiotics and have been on schedule with those.  The doc wants to wait until those are complete.  Two different antinausea.  Antacid.  He said the type of bacteria found has been known to do funny things in PWDs.  I forgot to write down the name of it - stupid.  The endo team didn't have much to offer at this point.

Her abdomen is not tender.  She passed the office neuro exam.  No fever. She has an occasional headache.  She doesn't sleep well.  I've questioned her extensively about happenings at school in many different manners: encouraging, pleading, pressuring.  She is the daughter that shares nothing but I do believe it did not start out because of something at school.  However, I do believe anxiety is playing a part it in now.  I've gotten some referrals for counselors - if I can get her there.  That is new territory for me.  Probably would help me too.  I've been in contact with the teachers and principle and she has been doing a pretty darn good job keeping up with most of her homework. 

I'm so frustrated.  And exhausted.  And sad.  I've burned almost all my vacation time.  I'm the primary financial support of the household and sole D caretaker.  The health insurance carrier.  It makes me anxious to not be with her when she is not well.  I've had to take to leaving her so I can work a few hours a day.  I insist she stay awake.  She has her meter, water, glucose and the phone on her nightstand and I call about every hour.

Today was not a good day.  Not my finest parenting moment.  I got (forced) her as far as the parking lot of the school and she literally had her hand over her mouth saying "I'm going to throw up."  I then proceeded to pressure her really, really hard.  I talked to her about how at this point she can't wait until her stomach is perfect.  She has to push through it.  It will be hard but she just has to get into the school building.  Threw in some guilt about my job and how I'm going to be in trouble with the school (a lie).  I kept us sitting in the parking lot for 45 minutes.  She basically only had P.E. left for the day and what is the point of that.  So I dropped her off at home, both of us pissy and huffy, and I went to work to get in a little bit of time in hopes of not losing my job.  Those are all things I've talked about before but in my frustration today (and a little bit of panic) I just laid into her.

We made up a little on the phone.  I apologized.  Tonight I talked calmly and supportively.  We both were both so sad tonight.  We made a solid plan to try to get to school tomorrow again.  I assured her that the school is completely supportive.  Which they are - they are amazing!  The school counselor called me to say I might receive one of those letters about a meeting but not to worry about it.  They know the situation, how diabetes can complicate illnesses and have seen me coming in for homework.  It was actually a supportive call and not one of those warning calls veiled in supportiveness.  And I met the the best teacher in the school district.  He surpassed his reputation.  We talked 10 seconds about homework and fell into a giddy, gushing conversation about To Kill a Mockingbird.  Just like that.  Love!  His eyes sparkled when he talked about Pink and how she is reading it.  Then he CALLED me a couple days later asking if he could STOP BY to drop off more material for her homework.  Huh?  She was home alone so I told him he could put it in the mailbox.  And then he slipped in there he was shopping and saw a fundraiser for JDRF and said to himself "Oh, I better buy one of those shoes for Pink!"  <baaawwl>

Too much sadness.  Then I feel guilty about being sad because others have it worse.  Then I think it's ok to to be sad and then back...and forth and back.

I just want her to feel better and be happy. 

We can do this. 

 damn, that was long, sorry.

No D Day: ------

                                        
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