Negative Negative Negative

Maddison's Celiac biopsy just came back NEGATIVE. Enough said! Lactose intolerance results take about another week, so for now we just hope that the group of symptoms Maddi has been having disappears....

Perhaps in the future if symptoms persist or again worsen I will consider doing a gluten challenge for Maddison, or allergy testing. But for now, its SPRING BREAK!!

Initial result/6 years!!

Maddison's Endoscopy went perfectly well. The initial pictures taken do not show any abnormalities, (A GREAT SIGN!) but of course the biopsy result will tell. We will hear back from her GI doctor next week. I'm thinking (hoping)that we just might be in the clear since the pictures were just fine......

Tomorrow marks my 6 year diagnosis date! Looking back now I remember that my A1c at the time of my diagnosis was 13.2% (340 average) but down to 6.8% within 4 weeks. Hallelujah for insulin! For the first 4 years of Diabetes my A1c stayed in the 6.0 to 6.5 range, thanks to following a very strict workout routine and watching everything I ate. Im disgusted with myself to say that 6 years in has brought a lazy me. I eat whatever, whenever. I dont prebolus. I dont work out. Ive gained weight and somewhere just decided that I would rather do the minimal than go the extra mile.

I hate this. I swore I would NEVER get to this point in life, but HERE I AM.

Im still stuck in a rut since my surgery in August. All I can do is blame my hormones (or lack of) because I am just simply not myself. Weight gain isnt helping my attitude either, and I know I am myself partly to blame because I have yet to kick my ass back into gear with my good old healthy ways. I sound like a broken record, I know. My last A1c came back (again) at 7.2 which is pretty good considering thats absolutely no effort on my part. -Sigh- Diabetes has totally taken the back seat for me. 6 years in is NOT the time to get lazy and careless with Diabetes, so today Im slapping on the CGM and going back to injections. Ive developed a horrible habit of eating too much and eating too much crap. I think going back to injections is a good way for me to get over this laziness. Who wants to take a chance of stacking insulin just because you want to eat more? Who wants to drag out the needle everytime you eat? Exactly.

One MAJOR issue with the insulin pump is that you can get in the bad habit of eating more just with the push of a button. Its again time for injections.....Wish me luck!

Here we go again

Since Maddison’s T1 dx 6 years ago I’ve questioned her persistent tummy aches. They come and go. No rhyme or reason. Most of the time they aren’t debilitating, just a dull nagging pain. Maddi may go weeks without any pain at all, then suddenly she has them daily, maybe even all day. Stress? Lactose intolerance? Fluctuating blood sugars? High blood sugars? Constipation? Stomach pain could be a bazillion different things! Sadly, tummy aches have over the years just become “normal” for Maddi.

But, recently we have seen an increase in headaches. Truth is, Maddison is having some issues in school both educationally and socially. Its been tough starting a new school this year, and 5th grade seems to be the time that the tween stage takes over in so many ways. I’d like to blame all these things for the headaches that Maddison is experiencing, but I know better than to do so when the headaches are also combined with other new symptoms. Persistent nausea. Increased severity of the tummy pain itself, joint pain and numbness and tingling in her hands and feet. All a classic group of symptoms related to Celiac Disease.

Maddison had her yearly labs drawn in December which included the complete Celiac panel, all negative. Yet, there is that TINY 3% chance that Maddison could still have Celiac that isn’t suggested by blood work alone. So an Endoscopy it will be, Thursday at 8am. This time I CAN'T cancel.

Ive put this off for too long, believing that Madi just couldn’t be that 3%. Maddison IS among the 3% that doesn’t have antibodies for Diabetes...so why would this be any different? –Sigh- If this scope actually comes back positive for Celiac I may just hate myself FOREVER because I've debated for SO long and always listened to everyone else, not myself. UGH.

The good news is that instead of being irritated with my concern like years past, Maddison agrees that she likely has something weird going on and she is tired of dealing with all this. She is even EXCITED to have the procedure done!!!! Yes, I said EXCITED. Maddison has asked question after question. She repeatedly assures me the procedure is perfectly safe “because they do this all the time” and she even packed a bag already!!! Is this kid silly or what!!?? Maddi says she can’t wait to see what anesthesia is like, probably because she was with me (and allowed into both pre-op and recovery!) when her Grandma had outpatient surgery last week. (It also helps that Maddi knows they use numbing cream for kids that get IV’s) And, she knows the procedure is QUICK. Im sure as Thursday nears Maddison will go through the emotions and worries, but we talked about all that too and I think we are good to go....as long as blood sugars cooperate of course! Wish us luck and BELIEVE this will be negative!

BELIEVE

I am not an outwardly religious person(is that the word I'm looking for??? "Outwardly"?). I don't strike up conversation about it. I won't debate you or compare your beliefs to mine. I believe in God; though I may have questioned his "reason" more than I like to admit.

But over the last few days I have witnessed the power of prayer. FELT the power of it. All because of my dear friend, Meri, and her sweet husband, Ryan. Most people who stop by my blog already know Meri (who's 3 of 4 boys have T1 Diabetes) and what she is facing... but just in case, you can read the story here.

Today, Sunday, March 4th, 2012, has been set aside as a day of prayer and fasting, all are invited to join the family in support, people of all denominations... everywhere! With this in mind, we invite you to post prayers and reflections of hope on your personal blogs and websites. There will be a thread started on the Shuhmacher Family's Miracle Face book page, where links can be shared. If you do not have a blog/website, and would like to share your prayers, please feel free to add your thoughts to this thread as well. By keeping them in one place, the family will easily be able to access your words of encouragement in the days, weeks, and months to come. Please spread the word to anyone, and invite others to join this massive prayer effort as well.

They need your help
They need your prayers
They need a miracle

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. ~Isaiah 41:10

We all know how costly medical expenses can be. Friends of the Shuhmacher's have started a fundraiser to help offset some of the expense they will endure. No amount is too small and would be appreciated. CLICK HERE FOR THE LINK to make a donation now.

From the bottom of my heart, and with every ounce of my being I BELIEVE in the Shuhmacher Family miracle.

Basal Testing and the Sickies SUCK with D

Basal rate: The amount of insulin required to manage normal daily blood glucose fluctuations. People constantly produce insulin to manage the glucose fluctuations that occur during the day. In a person with Diabetes, giving a constant low level amount of insulin each hour via insulin pump mimics this normal phenomenon.

The bolus dose is what you take to cover meals, per carbohydrate count.

Basal testing- Checking blood sugars every two hours during a fasting period to see if insulin pump doses are set correctly from hour to hour. If you see an increase or decrease of the starting blood sugar number of more than 30points in either direction you MAY be able to adjust the hourly dose to keep blood sugars more stable.

Recently Scott posted on his blog about basal testing. OH…Ummm...Ya. That reminds me. I guess I should check my own basal rates since I haven’t done so since my surgery in October. –Sigh- If you can count on one thing in the DOC, it is knowing there is someone out there to set the example, we all keep each other accountable! Thanks for the reminder Scott!!! (and influence!)

So here are my results from last night:

10pm 62 .1 insulin active 12C sweet tarts
1030pm 108 zero active
1230am 132
3am 138
5am 134
6am 128

I’ll take it. The only problem with basal testing is that ONE night is not all it takes to verify that your basal doses are set right. Two, if not three basal testing nights is ideal and will show you a better picture. So, I gotta check at least one more night to see if this was a typical night for my blood sugars or not. Fun stuff. Basal, bolus, IOB, ISF, digestion, illness, activity level,weather,hormones..insulin is extremely difficult to manage people!

You’d think that I occasionally check myself overnight since Im up checking Maddison anyway. Not so. I tend to be very stable overnight, (as long as I haven’t eaten high fat meals or treats before bed and didn't slave to chores during the day) so I typically only check my own blood sugar if Ive had a correction for an out of range blood sugar result before bed. Otherwise, I’d rather not have another set of numbers floating around in my brain overnight and I just don't see the need to check myself when Im up checking Maddison. Usually. Its just too many numbers sometimes. The WORST part is, I tend to confuse my number with Maddison’s number when Im sleepy checking us both. SCARY! Ive often had to recheck my finger poke to verify who's number was which! Sleepy brains managing numbers is a BAD combination sometimes!

Last night Maddison’s numbers were quite equal to mine. Stable. Amazingly. Night time for her is still unpredictable at this point. Im STILL making changes little by little. Maddi woke up at 338 this morning, which almost NEVER happens (because Im busy being the correcting queen all night!) so I knew she was gonna mention that something hurt or she wasnt feeling well as soon as she woke up. YEP. Sore throat and a headache. You can see it in the numbers!

Poor thing. As if it isn’t sucky enough to be a sick kid at school without high blood sugars making you feel even worse. Im always very saddened when Maddison is sick. My heart hurts because Diabetes is tough enough on normal days, but on sick days Diabetes can be totally overwhelming, draining and just crazy exhausting. I know how she feels, and its SO not fair for our kids to have to deal with both at the same time!

My blood sugar hit 388 yesterday (old site, no ketones) SO this was a BAD ONE for me and I just about thought I would die. (High for me is not usually over 250-260's) The computer screen at work was a billion times too bright. Thirst was gonna make me scream out loud, and my mental capacity was a fraction of what it should be. My body ached. My head was floaty. I felt low (weird how that happens) and I was grumpy, with burning eyes and nausea. I wasn’t even dealing with the sickies. Just high blood sugar. I can imagine how Maddison is feeling today while fighting the sickies AND high blood sugar.(Nurse said her first morning check was 210) So not fair. Sickies with Diabetes might just be the suckiest thing EVER. Chasing numbers seems to be my life sometimes.

One Night

Last night was that ONE night.

The ONE night that is reason I make insulin increases very slowly during the sleeping hours, even though I know it could take FOREVER to get things back in range.

That ONE night that proves all other nights wrong.

That ONE night that doesn't make sense. So, you watch patterns and wait...not making any changes for a few days.

That ONE night that influences your future decisions in managing numbers, even if only in your sub-conscious mind.

There is always that ONE night.

Maddison was 190 heading to bed. Zero insulin active. Every other night lately I've given a correction to bring down the high and she doesn't budge, or, she ends up much higher. Didn't I just blog about this yesterday?

So, last night I was just about to over-ride Maddi's insulin pump suggestion of .475 to be given as a correction, and give an extra .2 as I have been doing many nights for weeks as needed lately.....

But I didn't.

I'm not sure why.

It would have made sense to do so. This night was no different than other nights. I expected numbers to behave the same. I didnt expect the high to budge, but I had to try.

I didn't give that extra insulin.

I have no idea why I reconsidered.

2.5 hours after that correction Maddison was 55.

Another .1 still working to bring her number down even further.

And my heart stopped.

What happened?

WHY tonight did that same correction amount that didnt budge numbers before cause this low?

What if I did decide to increase that correction earlier? Would I have caused my child's demise? Seriously people. This is the shit that parents of children with Diabetes deal with. Every. Single. Night.

Building

Fatigue. Overwhelming fatigue. Irritability. Body aches. Headaches. Worry. Yawning. Heavy, burning eyes. Lack of concentration. Triple size coffee. Can’t think straight. Collapsing on the couch after work. Ignoring household chores. Shut down. Numbers, numbers everywhere. Blood sugar checks every two hours at night. Its been a rough spell for awhile now.

Its been building.

Stress.

Physically, mentally.

Maddison's night time numbers just wont cooperate, despite my best efforts.

Keeping the balance.

Not too high, not too low. Can't make changes too fast, in fear of causing lows.

You'd think blood sugars would be more difficult to manage during the day with so many more variables to consider.

For Maddi,they aren't.

Daytime numbers are the easiest for me to manage, because there isn't the same FEAR that night time brings.

The fear that I won't wake up to check basal changes recently made. The fear I wont hear the alarm clock and I'll wake up to a seizing child. Or worse...

I never used to have this fear of managing Maddison's numbers at night. I'm bordering paranoia these days. Ive been waiting months for this feeling to pass, yet somehow it is still there. WHY?

I have been awaken by my own scary lows lately. Maybe that's why. Last night I was 32and unable to get myself out of bed for juice. I didn't have the strength. I was confused. Josh was laid over out of town for work, and I was alone. I fell back to sleep for awhile. I'm not sure how long. I eventually, literally, rolled out of bed and made it to the kitchen where I devoured a bazillion carbs without even comprehending. Hunger took over. Thankfully my body took charge and woke me up, violently shaking, hunger forcing me to eat. By now my BS was 54.

I remember walking back to bed and looking at the clock. 230AM. I planned to just lay there in bed and wait for the life to come back to me so I could check Maddison's blood sugar, but instead I fell asleep. Physically drained. I woke up 4 hours later, panicked, because I never re-checked Maddison and I never rechecked my low, which means I also didnt give myself insulin to cover the extra carbs I consumed while freakishly scarfing down any food I could find. NICE.

My BS = 378. Maddi was 264.

FUCK. Seriously? I swore tonight would be the night I'd see progress with Maddi's insulin resistance. The basal changes, ISF change AND correction I made for Maddison earlier that night didn't budge her number. AGAIN. I'm guessing by the time I get changes right for these highs, she will likely be back normal and the changes made will cause LOWS. F U Diabetes.

I'm making changes every 2 days....which have turned into WEEKS.

-Sigh-

Fatigue. Overwhelming fatigue. Irritability. Muscle aches. Headaches. Worry. Yawning. Heavy, burning eyes. Lack of concentration. Triple size coffee. Can’t think straight. Collapsing on the couch after work. Ignoring household chores. Shut down. Numbers, numbers everywhere.

Its been building.

Stress.

Stress of being a Pancreas 24/7/365.

Stress of Maddi's climbing numbers during the night.

Her numbers are great during the day....

Its night time that's tough.

Brutal. To my heart, to her future.

Its been building. Burn out. Which brings guilt.

Guilt that says I suck. I suck at trying to manage my child's blood sugar, even though I know its just Diabetes that SUCKS.

Its been building. Anger. Worry. Defeat.

Midnight. 2am, 4am and 6am.

I know numbers will eventually settle, but what I want most is defeat.

And sleep.

More importantly, a healthy child. Free of future complications.

So, Midnight, 2am, 4am and 6am is here to stay until this crazy spell decides to leave. At least daytime numbers are good, right? My mind says yes, my heart says no....my heart wants it all. For her. For her health. For her future.