Monday, December 8, 2014

Diagnosiversaries: 7yrs one, 5 mo the other

Today marks the 7 year anniversary of J.J.'s diabetes diagnosis.  It's always a bittersweet day. I usually shed a few tears....don't really know why...but I do.  We normally celebrate with our family Toys for Tots shopping trip and takeout.  This year the older girls and Jason are working at the Operation Christmas Child sorting facility which leaves me at home with 'da boys and time to write!

2014 ~~THE BAD

After J.J's Celiacs diagnosis in July, the Celiac expert advised the our entire family get screened for the disease, since it is genetic.  I had a daughter leaving for overseas, so we quickly got all of us in for the blood draw.  My results came back quickly, with really high numbers.  Two of my children were also testing positive, but with relatively low numbers.

In September I had an endoscopy to get a final diagnosis.  My results came back being positive for Celiac Sprue(the official name), and the damage being severe.  How severe?   Zero being no damage and 4 being cancer..I was 3C..the closest to 4 a person can get.  So severe that I'll never totally repair my small intestine.  It will take 2-5 years to "heal" as best I can...and that is no guarantee.  I went completely gluten free the next morning.  I don't eat out.  I eat very few processed foods...because gluten is in just about everything it seems.  It's a drastic lifestyle change for us.

My two other children will be re-screened when the one gets back in the states.  We'll continue on with further testing with them if needed.

J.J.'s A1C was up in November...8.1!  Which really was a result of figuring out the GF lifestyle.  We would get the gluten free taken care of, then forget to dose for his diabetes.  OR because we are using so many whole foods it's harder to predict the carb counts.  Plus the GF labeled foods make his numbers wacky!!! Thankfully our ENDO completely understood and considered this a new diagnosis year....much grace!

2014~~THE GOOD

To say I am thankful that J.J. was diagnosed with Celiacs sounds completely wrong.  But yet it doesn't at the same time.  Do I want him to have it...NO.  But the fact that he is screened because of his diabetes, and because he was diagnosed, I was diagnosed.  His diagnosis may very well have saved my life.  And so I can be thankful.

Me being diagnosed lifts a huge burden off of J.J.  Diabetes is a hard disease to have, but having both he can say that he'd take diabetes any day over Celiacs.  Having a Celiacs "buddy" in the house, has helped him through some hard times.  It can get depressing watching people eat some of your most favorite (mainly takeout) foods right in front of you.

We are eating better, that's for sure.  My new favorite stores besides bookstores are health food stores...I shop 5 different local health food stores plus online for all the foods I need.  It's really adventurous...but sometimes daunting.  Either way I know the foods we are eating are better for J.J. and his diseases.  As an example....a normal spaghetti meal would have been in the 100 plus carb range for J.J....all that pasta and bread.  Now it's maybe 15-20 carbs.  He likes spaghetti squash or zoodles with his sauce and meat.  He's learned to make a pancake with peanut butter...he tweaked the recipe to also include bacon....again reducing his carb intake and increasing the protein and fat to keep him satisfied longer.

J.J.'s insulin intake has decreased since going (healthier) GF.  When we saw the endo we found out his insulin needs have dropped....by quite a bit.  She told us many people when they have Celiac often just substitute the GF versions with the rice flours, but the carbs in those are sky high, and the satiation level is almost nil....so hunger is always an issue.  The fact that J.J. was able to recognize this quickly (he tried the boxed GF mac and cheese for awhile) has been a huge plus for his diabetes.

2014~~THE UGLY

Having another misunderstood disease really STINKS!!!  Because GF is considered a fad celebrity "diet", it makes having an auto-immune disease that is triggered by gluten such a bummer.  People don't understand this isn't a FAD for us.  Gluten is POISON!!!!  Please read that again....POISON to our system.  Gluten triggers a response in our bodies that attacks our small intestines....lingering for up to 6 months with just ONE minute exposure.  It's something we will never KNOWINGLY eat again.  It's not a CHOICE(unless you consider poison a good thing to ingest)!!!!  Yes...I choose to eat poison....ummmm....NO!!!

One of the harder aspects of being gluten free is cross-contamination.  Knowing that a food hasn't been cross-contaminated somewhere in the process has been a challenge.  Shopping takes a tad longer as I decipher the labels...that's why I like health food stores...they all have labels letting me know which products are GF.  For now "my kitchen" is in our school room because it has a sink and tables I can work at.  Plus a fridge close enough to keep me from having to run around too much.  That room is my GF safe haven.  No gluten allowed....or very little anyway!!:)

People sure do get offended by your food choices, when it's pretty much NONE of their business what or how you eat.  I always bring my own food wherever I go.  It's just how it has to be for now.  We are on a mission to heal our bodies as best we can...and it happens to involve food.  You wouldn't ask a cancer patient to put some special concoction in his IV just because YOU made it, and it should be okay for him.  Well, then don't ask me to eat your "GF" cupcakes that you whipped up in your glutened mixer. OR say to me "there are no gluten ingredients in this dish" and expect me to eat it.  I won't.  WHY?  Because I know you have a glutened kitchen, and I don't know if you know all the crazy names out there for gluten.  So...simply...it's so much less stress on us when we bring our own food, than to worry about whether the food you've prepared is glutened or not.  It's nothing against you, or your cooking.  We appreciate your thoughtfulness...but don't be offended when we turn down those cupcakes....really it's no big deal....we just don't want to be poisoned!

And there-in lies the problem again.  People on a FAD diet have a choice to go off of it.  Or they can "cheat" when faced with certain social situations.  But we don't have that choice, so the misconceptions out there are tremendous.  We know so many people that are GF, but they don't have to be strict.  I have to be so strict that if the product doesn't label it gluten free...I can't eat it.  J.J....his damage being less severe can eat out if we've done our research and asked the proper questions of the restaurant.  So even in our family we have varying levels of compliance...but we are both GF....we can't just decide to "cheat" for a day.


My calendar next to my bed....November!;)

2015~~HOPE

I couldn't end with the ugly.  Life is hard....but God is good.  That lesson is constantly being driven home to us.  Jesus is sweet.  He is the bread of life....so we have HOPE!!  What is gluten anyway??? Right now it "seems" like such a huge part of our lives, but when we keep it all in perspective it's just a protein we need to avoid.  There is so much more to life.  So as we continue on our path to physical healing we take comfort and have great hope in our great God who gave us our bodies.  It was no accident...our genetic code.  All has been sifted through HIS loving hands, and in this we REJOICE.  One day our bodies will be fully healed(Ps 103:3), and there will be no more tears(Rev 21:4)... in this we HOPE!!

Happy Diagnosiversary!!!



  




Monday, July 7, 2014

Another Day...Another Diagnosis

In December J.J. had his routine blood screenings. The Celiacs panel came back elevated.  We were advised to wait 3-4 months and recheck.  At the recheck his numbers doubled.   We were then referred to the pediatric gastroenterology clinic.  After a two month wait to get into that clinic, J.J. was scheduled for an endoscopy.



Today was the endoscopy. TODAY....after a half a year of wondering..... today..... we got the answer. Today we saw the inside of J.J.'s small intestine.  Today we saw the damage.  Today we heard the words.... again.... "I'm sorry, he has _____."  Today I felt that sinking feeling... I had held out hope that maybe it would be different for him, but deep down knew. Today I held back tears.  Today we all put on brave faces....and stepped...into...another lifestyle change.  Today we bought new foods, new appliances, new kitchen items.  Today he ate noodles...from Noodles... and pizza....from Pizza Hut....just because.  Today I think about cross-contamination.  Today J.J. hangs out with his Dad and learns how to change the brake pads on a car, and pick up round bails for the horses.  Today J.J. is still a kid.

TODAY...

I thanked God....

He loves J.J....infinitely more than I do.
His mercies...new every morning!
His provision
Living in America
The doctor's skilled hands and knowledge
Girls holding down the fort
BG 130 before surgery
BG 90 after
BG coming down from 600's after a pump malfunction last night!
J.J.'s concern that his food will be too costly
          ....his tender spirit
J.J....not much pain
Jason's job
Jason taking us and being with us 
Friends and family praying
Life ..it is..more. than. food!!

Yes....today I am sad....but today...I AM THANKFUL!!!

Another Day....another diagnosis.....





Friday, April 20, 2012

BIG D....

"As J.J. and I walked through the corridor from the clinic to the parking garage it all began to sink in. "  ~~Our Bon Jovi-esque Endo Visit





This time as J.J. and I walked through the corridor I replayed in my mind and heart how that last appointment went.....but I didn't linger long....I couldn't......I was mentally fist pumping.....YES!!  YES!!! YUUUSSSS!!!!   I had to stop and get a picture of the BIG D!!  I wanted to remember this appointment.  Not only for the great results but for the comment J.J. made as we passed the BIG D on the way in....."They must have made this floor D because the Diabetes Clinic is on this floor."   I had never noticed that before!!

Since J.J.'s last appointment we made a lot of adjustments.  He went back on the pump....but we stayed on Levimer for his basals.  We bought a more fancy smancy scale.  We dosed more often before the meals instead of after.  And many, many other minor tweaks.

So....the results.....his A1c 7.4!!!   His last A1c....8.6!!!  Yes, I know they like him to be below 7 at this point.....but considering that 7.4 is the lowest reading that we've seen for the past 6 appointments(maybe more....I could only see that far back on the screen!)....I'm pretty stoked.   I think the Endo was slightly speechless.  There wasn't much for her to say.  She did try to look at the 10pm-12am time period....but that time slot has always been notoriously difficult to manage for J.J..   We'll try upping his basal on the pump at that time to see if it helps.

We have to work on the lows.  J.J. has a hard time stopping to get a snack when he's active.  He's beginning to understand the importance....I HOPE!!  

We also were shown how to use another infusion set and given a few samples.  He's so thin the only site we can use is his backside....which looks like a war zone.   This new set goes in at an angle instead of straight in....so it can be used on thinner places on the body.  J.J. didn't think he'd like it......so we'll see.

His blood work came back.....ALLS GOOD!:)  No celiacs, liver looks good.  The Lipid Panel was lost...hoping they find it!!!

After the appointment we celebrated by going to a wonderful children's bookstore.  J.J. didn't know what the store was so he said "Do I have to go in with you?"  He was pleasantly surprised.  I told him he could pick out one item.  After a bit he comes to me and wants to use his one item on his sister.....or.....maybe his little brother.   I couldn't resist.....I bought what he picked out for them.....and him!!:)

Today has a happy BIG D day!!:)

Wednesday, February 1, 2012

Diabetes Abortions

I know I am not going to get any popularity points for this post, but the thoughts have been swirling in my head for weeks.....begging to get out.  So here is my thought process....

While praying for the unborn in church a few weeks ago the pray-er mentioned the value of life even for Downs babies.  And I don't know why but that stopped me from hearing the rest of the prayer.  What? Downs babies....what do they have to do with the abortion issue?  Well, I knew....kinda sorta....but I didn't really know.

My mind quickly went to the genetics counselor we were advised to see when I was pregnant with my son 2 yrs ago.   Being "elderly" in the birthing world my docs wanted more testing to rule out Down Syndrome.  Normally I would have told them to stick their tests where the sun don't shine....but having J.J. really made me think that if I could KNOW beforehand I was going to have a child that needed extra care I would like the time to research and learn all I could.  Prepare ya know?  Well...back to this particular session.....the counselor learns of J.J.'s diabetes and she says..."You know researchers are trying to find the genetic link to diabetes, so they can better inform parents...even in the womb."

At the time my maternal hormones were flowing. I could care less what researchers were doing I just wanted to get to the ultrasound room to see this baby.  But later....o.k...almost 2 yrs later.....my mind can't shut off.  So this lady is telling me that they are trying to find genetic links to diseases so there is CHOICE.  For whom?

Back to last week.  I was reading an article about a family that had a Down syndrome boy, then ended up adopting 3 more!!!  I was reading it aloud to my 16 yr old when I choked back tears...I couldn't read on.  The line I stopped at was this:


Ninety-three percent of babies prenatally diagnosed with Down syndrome are aborted.

I knew the percentage was high....but NINETY-THREE percent!!!  Wow!!

Then that same week I see a news blurb stating that diabetes is taking a toll...burdening our state health care system.  It's costing soooooo much....

Hmmmm......

Soooo..... if researchers figure out a way to diagnose Type 1 or even Type 2 in the womb....and since diabetes is such a "burden"....will parents be encouraged to abort that child?

Or....how about this question to Type 1 parents.....Would you have allowed your child to live?  Or would you have terminated his/her life? 
 
Would I have let J.J. live?

I think you know my answer. 

What concerns me is the thought that we should eliminate people because they have a disease, genetic disorder, or what have you. The prevailing thought seems to be that if life will be hard or costly then eliminate it.   I'm not at all saying Downs is an easy disorder.  But the few families I've known find a lot of blessing along with the burden. 

I think many would abort a Type 1 child as well if they were to look at the whole of the disease.  And that completely makes me sad......but then mad.....and then I take it all to God and pray earnestly that researchers don't figure it out.....at least for the purposes of killing more children.   I can't imagine life without J.J.....Type 1 and all!! 

Son.....you are a treasure beyond all comprehension!!  I thank God for you....diabetes and all!!!  You were fearfully and wonderfully made!!  Now live a glorious life.......LIVE!!!   LIFE!!!  HUGS!!  MOM

Thursday, December 29, 2011

On the pump again....

......here we go....trying the pump again!!

Yesterday was THE day!  It was going to be a fairly quiet day with all his siblings(minus babe) gone to the Mall of America.  J.J. was really scared of the shot.  He remembered it hurting REALLY bad!  We counted....1....2...3.....POKE!!  He didn't flinch, and says "Was that it?".

An hour after eating he was at 200...YES!! It's working!! 

What we decided to do (for now) is continue to give him long acting insulin for basals twice a day, but deliver some of his basal through the pump to prevent clogs or air bubbles.  We felt pretty comfortable with his basal dosages and wanted to mess with that later if needed.  It was nice to be able to give his bolus through the pump.  Once we forgot some carbs,  another time he wanted more food.  I'd forgotten how nice that is!:)  I also appreciated the pump when I checked in the night and got a slightly high reading and the pump did the .3 correction. 

I suppose the only minor complaint for him is getting used to toting around a medical device all day.  I offered to sew pockets inside his pants, but he says that'd be too uncomfortable.:(  I should try it, and let him see how it works for him.

Also....yesterday I mentally set an A1C goal for the year.  I pray we get there.    


Sunday, December 25, 2011

The Diabetes Christmas

When the kids were younger (and so was I)....I would stay up the night before we celebrated Christmas preparing last minute gifts.  Whether it be sewing or wrapping or assembling there was always something to keep me up late.  This year it's....you guessed it.....diabetes.

J.J. has been really high the past few nights.  This requires extra loads of laundry and middle of the night wake up calls by J.J. to dose him.  So tonight I edged up his nightly basal a little....a little mind you!!  I mean the past few nights we've seen 300's and 400's!!!  I kid you not.  So yes, a little nudging up of basals was in order.

We assumed he was getting sick.  His sister who bunks above him has been vomiting.  So we thought: "diabetes always lets us know when a cold, flu, or sickness is headed our way by unexplained highs....so edging up the basals is an o.k. thing....unless HE vomits."

But he hasn't vomited.  No....not vomit....thankfully!

He's just sitting in the 50's for the past hour!!!  I went to check on him at a quarter to one....AM!!  And discovered him at 50.  Juice box...30 minutes later....58....juice box...15 minutes later.....59.....juice box...78......and here I am passing the time writing this....waiting to see if that's all he'll need.....TIME...2:20.....A...M!!!

The kids wanted to get up early and open gifts.   They know I am NOT an early morning person.  Our pessimist  realist child informs everyone that gift opening won't commence until NOON!!  I think she may be spot on!!  

Hold on a minute.....another blood check.

Ahh....finally 130....a little assurance I can get a some shut eye.  Although probably not for long......as we watch the pendulum swing the other way from ALL THAT JUICE!!!!

And such is the beginning of a Diabetes Christmas!!

Good night all....and Merry Christmas!:)

Thursday, December 8, 2011

Diagnosiversary...Toys for Tots Trek!!!

It's been FOUR years today since J.J. was diagnosed.  FOUR!

We celebrated our usual way by shopping together for Toys For Tots then delivering the gifts to the Kare11 drop off site in the cities!!






Love you Sweetie!!!:)

Tuesday, December 6, 2011

Getting Back in the Game: Evaluations and Preparations



Since our last endo visit we've spent some time evaluating our habits to see where we can improve on J.J.'s diabetes care.  Here are a few of our observations:

We are trying to dose J.J. BEFORE he eats.  Too often he would eat then forget to tell us he ate, or he would get busy, we would get "busy", and forget for an hour or more.   I wouldn't say this happened ALL the time, but enough that it makes a difference.  So this week we started dosing beforehand.   Friday morning I was patting myself on the back for dosing him BEFORE breakfast....until he checked his blood for lunch.  A whopping 401!!!  WHAT??  Oh yes,  that ever so annoying aspect about diabetes:  I CAN WORK MY BEHIND OFF CARING FOR J.J. THE BEST WAY I KNOW BUT IN THE END..... THE RESULTS ARE TOTALLY OUT OF MY CONTROL!!!   A bright note, however, is that since we've been doing this his numbers seems more in range....however we are seeing more lows.

The other observation we noticed is that with the birth of our son last year I've been less in control of J.J's diabetes than I've ever been.  It was hard at first to relinquish control....I was very fearful...but I soon learned that they could "manage" without me as I focused on the issues facing our youngest.  They did manage, but I think it's time to get my "game face" on....mainly by recording keeping.

We haven't kept records for J.J. for quite some time.  I used to download his meter, and check his numbers quite often.  I watched trends and made many adjustments.  So, this week I got out the computer program and spent and hour.....TRYING TO GET THE THING TO WORK WITH OUR NEW COMPUTER.....no success.  My "extra" time is so limited....so to work on it that long and get NOWHERE......sigh!!!  I'm hoping to get it up and running again, but in the meantime I realize I need to start at least getting his numbers down on paper.

I've also spent time this week researching good kitchen scales.  We're about due for a new one....we own a cheapy Target clearance scale.  I noticed it was off when I tried to ship a package this summer.  I'm trying to get one that will give me the carbs to foods...one of the smart scales.  I'm not sure which one is the best for our purposes.  I posted on a forum but only got one response.  Hoping to get that nailed down soon for more accurate carb counting.

Finally.....we're preparing to get J.J. back on the pump.  We talked about it with him a few weeks before we went to the endo.  Our original plan was to do shots in the summer and pump in the winter.  But he absolutely did not want to put the pump back on a couple years ago.  So this fall I asked him again what he thought.  He was open to it and after our endo visit it looks like we'll go back to it for a bit.  However, to do that I need to (re)educate myself on the pump and and get some charting under my belt.  I've taken my notes from Pump School and "Pumping Insulin" with me to the gym the past week to refresh my memory.  J.J. has been sick for the past month or so, and last week he had a bad chest/croupy type cold, so we wanted to wait to put the pump on him....to get proper readings and such.  Our endo gave us the numbers we need to get going again....or at least to start with.

As much as I know all of this is necessary and good for J.J.'s health.  I wish there was a good balance.  To manage his diabetes well without having life swallowed by...... managing diabetes.   I wonder if there is any hope of that happening?  Oh well...for now....we'll forge ahead!!:)  


  



 


Thursday, December 1, 2011

Our Bon Jovi-esque Endo Visit


As J.J. and I walked through the corridor from the clinic to the parking garage it all began to sink in.  Her words.... SHOT right THROUGH my HEART.  As my mind said those words the Bon Jovi song came popping in as well.....

A shot through the heart
And you're to blame, Darling,
You give love a bad name..
                 ~Bon Jovi


As I sang the song (not out loud!!) the next line hit me.  Yes, that's what she was saying.....YOU'RE TO BLAME!!!!  She was trying to get to the bottom of J.J.'s ever rising, worse than it's been since his diagnosis A1C.  She asked if we dose before or after meals.  Then it dawned on me.  I had been working on getting J.J. to come find me after he ate so I could dose him.  As I explained that to her she said....."It's not his fault.  Where are YOU when he eats?"   OUCH....that hurt!!   We talked a bit more, but in essence she was saying it's our fault and we need to do something about it.  Just a friendly reminder that 95% of diabetes care is placed on the parents' shoulders!!

Then the last line of the song began to sink in....YOU GIVE LOVE  A BAD NAME....yes, I do...thank you very much.  I now see my form crushed by the weight of a semi being peeled off the parking garage floor....thin as a piece of paper.  I have no excuse.  His care...his diabetes care... is our responsibility....well, mainly mine since I'm here 24/7/365.  But I'm one to take on a challenge....to figure out where we need to improve and forge ahead......


....after I have a good cry !!

 (actually I'm trying not to cry....it always gives me a sinus headache.....so I'm refusing, yes REFUSING to shed tears...for now!!)

Thursday, August 25, 2011

He's Back From Camp!!!!





J.J. made it home after dark last night.  He was super tired and happy to be home.  He said he had a good time, but when asked if he wanted to do a whole week next year he said "No, not really."  It's an hour and a half from the camp to our house, so by the time I got to him he was done telling his stories....sniff sniff!   He liked the pen needles the doctors used, but still doesn't want a pump.  He got a load of "goodies" from sponsors, and came home with a tie dyed shirt he did in crafts.  Sorry....not too much to tell....maybe I'll get more out of him at some point.....but I doubt it.   I'm glad he's home!!
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