Sunday, December 4, 2011

Her smile

From CHRISTMAS2010
On this day 5 years ago I climbed into Maddison's ER bed and held her tight. I wanted to run away and allow myself to cry all the tears that were causing tremendous pain in my heart. I wondered why I waited so long to see the truth. I had been questioning Maddison's health for nearly an entire year at that point. To this day, I still dont know why or how I could have waited so long. I feel guilt to this day. But, everyone told me I was crazy. I just couldn't bring myself to poke her finger, revealing our new reality, even though I knew in my heart what was happening inside her tiny body.

5 years ago today. ...with too skinny little arms, and dark circles under her eyes Maddison still smiled while fighting back tears as the Nurses and Doctor worked around her. Maddison already knew what Diabetes meant, for I was diagnosed myself just 9 months earlier. Problem is, Maddison also knew that Grandpa was living a life of multiple complications from his Diabetes. At the tender age of six Maddison already knew all too well what hospitals were like, for we often spent endless hours bedside while Grandpa was in and out of the hospital over the years. Looking back now I probably said alot of things about Diabetes and Grandpas reality of health that I wish I never said. I never then imagined that Diabetes would be in her future.

Still knowing the realities, Maddison was able to smile through her fear. She cried of course....But for the most part, Maddi still tossed around smiles to the Nurses and hospital staff despite feeling so sick, scared and heart broken. Its all in her smile.

To this day Maddi's smile still lights up our lives,and insulin makes every day possible. Without it, Maddison would have already succumbed to the disease. Insulin isnt a cure, but it is a blessing.

We are at a point in life that Diabetes isn't a big deal anymore. Lows aren't as scary, and highs don't eat up my heart on a daily basis anymore. We have our days, for sure. Diabetes still hurts sometimes. Alot of times. But it isnt like it used to be. It isn't all consuming. It isn't as scary. Definitely, not nearly as scary.

All because of her smile. She is happy. Healthy. Thriving. Strong. Proud. We CAN do this. We CAN. Even on the scariest days, we know in our hearts we will be ok.

Happy 5 years to my Maddison.....its been a long road. We have cried, screamed, rejoiced, prayed, stayed hopeful, strong and determined. Most importantly, we have accepted and found peace in our lives knowing we CAN do this, and we are amazing despite Diabetes trying to kick us down. A happy 5th year, for sure.

Thursday, December 1, 2011

Maddison and I both have our 3 month Endo appointments next week....surprisingly so far (knock on wood) Maddison hasn't hit the crazy highs and random numbers like she (and everyone else) usually does just before the "report card" time rolls around. The last couple weeks/days reflect most on the A1c, so this time Im REALLY hoping/expecting to see an A1c that I feel truly reflects how the last 3 months have been with blood sugars. Maddison has had a pretty good 3 months of numbers even with back to school this year, which is very surprising. Adjust here, and adjust there.....numbers have just kinda fallen into place without causing me too much brain pain! Well, during the day that is....

Nigh time is another story....

Two nights Maddi will be a tad high. One night perfect. Another high night. Two good nights. One low night. Three high nights.....all I can do is watch. You can't change anything with that kind of pattern!! 1 in 20? Ummm.....yeah. Thanks alot for that JDRF. While I do appreciate them telling it like it is, that 1 in 20 scares the HELL out of me. I didnt need this reminder of our reality x's 2...really, I didnt.

So, I'm TOTALLY guilty of running Maddison (and myself) a little bit higher at night since this "ad" was released. I feel terribly guilty for doing so. But, Id rather feel terribly guilty for awhile than to freak out every night and not be able to sleep while I obsessively check to see if Maddison is breathing. Yes, this fear shall pass. In time. 1 in 20 is some seriously scary shit!

Me? Ummmm.....Im pretty sure this will be my highest A1c EVER. (Ive said this many times before) Ive gotten lazy. Im burned out. I just "don't care" so much. Im only checking my sugar about 4-5 times a day right now, instead of every 3 hours like I used to. I'm not sure if I'm adjusting to life without my Ovaries or what, but I'm feeling and looking pretty GROSS. I look like HELL. I like to blame my hormone patches for my weight gain (8lbs!!) but lord knows all I want to do is eat CRAP and pretend my Diabetes doesn't exist. I feel low at 90 and I see 250's every day. There used to be a time when I never saw a number over 150. Lately Im happy with a 180. I'm too irritated by low blood sugars to make any changes for highs, so I just leave everything the way it is, even though I know changes need to be made. These damn hormone patches are hard to figure out! So, I do nothing. Im totally ashamed actually. Maybe I need a "bad" report card this time to kick my ass into gear. I hate being this careless and lazy. So why don't I just do what I need to be doing!!?? Keeping my own body functioning, healthy, and alive is catching up to me! Im TIRED of thinking about numbers every hour of every day. Im TIRED of stopping what Im doing for low blood sugars. Im TIRED of site changes. Finger pokes. I'm TIRED of being so "perfect" all the time managing numbers and I just want to pretend I can do less of all this crap and still be ok.

Sometimes less is good if it gives you a mental break. Im sure my A1c will give me the swift kick in the ass that I need right now. Thats even better.

Monday, November 7, 2011

2011 JDRF Walk


"Maddison's Mutts on a Mission" exceeded our fundraising goal!



Thursday, November 3, 2011

Blame the Diabetes!

This morning Maddison was grumpy!! Grumpier than usual, I should say. Maddison isnt a morning person, "unless I wake up by myself WITHOUT an alarm clock!!" -Sigh- I don’t know if it was the high blood sugars all night (TWEEN!) or just waking up on the wrong side of the bed this morning, but I’d like to blame the Diabetes. Im just in a “blame Diabetes” kinda mood right now, and here are some of the reasons why....

#1 My pump ran out of insulin last night, and never alarmed. So, I woke up too high in the 240 range. Thirsty as all hell. Headachy. Achy and TIRED! I could blame myself for running out of insulin, but Id rather blame the pump for not alarming!

So, I then changed my pump site to my tummy (which I have only used a few times in all these years) and it hurt like a Bitch. That’s reason #2 to blame Diabetes for everything today! It made me grumpy! This site change was of course BEFORE I had my morning coffee, which means Im not only irritable because of high blood sugars but also highly irritable because my brain NEEDS coffee immediately upon waking....especially after chasing Maddi’s highs all night!! Stoopid Diabetes pump sites!

#3 Because Im using some nice new territory with this fresh pump site, Ive been chasing lows all day. Stoopid absorption changes! Lows all day, while at work. Even suckier than when you are just at home! At work I need to be focused! Im trying to calculate numbers from insurance payments and such, but I literally couldn’t add
2 + 2 today. I stared at the computer screen. Blankly. I had a lot of work to do, but Diabetes didn’t care. I was forced to put on my medical science hat and decide how to decrease my insulin dosing while wearing this tummy site for the next 3 days, or continue to run too low. Basals? Bolus? Or both? Stoopid Diabetes!

#4 I had enough test strips for the day....for a NORMAL day. Today wasn't normal. I was low, low, low and used all the test strips I had left! Which meant by the end of the day I was left GUESSING just how low I was. Blame the Diabetes. Or, the pump site!

Reason #5. Its 11am and my cell phone rings. Its Maddison’s school. By now Im saying the F word out loud while chasing my lows at work, and I don’t even care who hears me!

I was first thinking Maddison had a bad low blood sugar and the Nurse was calling to let me know. Maddison has been low a lot lately, so she isn’t feeling low anymore until she is VERY low...(hence the 34 over the weekend)

But instead of the Nurse calling to report a crazy low, a recorded message plays:

“Your child Maddison L is reported as absent today, November 3rd.
“Please call the attendance office to verify”

WTF? I dropped off Maddison with many minutes to spare this morning, as usual. She should have been there in plenty of time before attendance was taken.

My heart palpitates...

My still lowish brain is being super dramatic, and even down right unreasonable at this point. I call the school, while worrying that Maddison somehow wandered off campus with a low blood sugar before the morning bell rang. Maybe she is passed out in the bathroom? Maybe she was low and couldn’t make it to the nurse!? Maybe her highs overnight have turned into DKA and she is in a coma somewhere!! Maybe she ditched school and walked to the park nearby? After all, she IS a school “hater.” It seems Maddison will just never understand why any child should “sit at a desk all day to learn nothing and be bored when real life teaches you more.” –Sigh-

I mean really...my mind was convincing me of all kinds of crazy shit! But still, you never know with this fucked up disease, and when you are a worried Mom with a lowish blood sugar brain on top of that...your thought process is CRAZY!!

I called the school office....

The receptionist verified with Maddison’s Teacher while I was on hold that she was NOT there. Maddison was NOT in class for morning attendance, and she is not there NOW!!!! Did I mention it is now 11am and I dropped Maddison off 3 hours ago!!??

I am about to vomit. WTF do you mean she isn’t there!!??

My blood sugars are lowish, and I cant even fully comprehend what this crazy chick just told me. All I could think was "what kind of fucked up trick is this?" Yes, my lowish brain actually said that OUTLOUD!!! Maddison is NOT in class. Maddison is NOT in class. Maddison is NOT in class...

I just hung up. I didn’t know what else to do. I called the school nurse...

The first thing I said to her was...

Is Maddison there?

“No” said the Nurse.

That’s all I heard.

At that point, my lowish brain shut down and didn’t understand because it was too busy freaking out to listen any further....

In my mind the Nurse was just mumbling at this point.

I explained to the Nurse about the phone call I got from the attendance line....

My brain was blank.

“NO”.....what do you mean NO Maddison isn’t there?

And then I finally came to and realized she was telling me Maddison WAS NOT THERE now, but was a few minutes ago. She didn’t mean that NO Maddison wasn’t there TODAY.

Its crazy that my mind just stopped at NO....

HOLY SHIT, She IS THERE!!!!!???

Of course she is!!!!

Talk about confusion!!!

I blame the Diabetes. I was low. I was worried. I couldn’t process what anyone was REALLY saying. –Sigh-

Apparently Maddison went straight to the nurses office upon arriving at school today. She had a headache. She laid down for about 20 minutes, which caused the teacher to mark her absent. When the receptionist called to ask if Maddison was in class, the teacher said no because she wasn’t in class RIGHT NOW......

What that damn receptionist SHOULD HAVE ASKED THE TEACHER was if Maddison had been in class at all TODAY.

JEEEEZUS!!! All this heart attack for nothing!

I say, its Blame the Diabetes day.

Monday, October 31, 2011

Halloween 2011



I remember the first Halloween we had after Diabetes came into our lives, (2006) it was crazy stressful, even though Maddison had been dx'd 10 months prior. I remember my biggest stress was managing blood sugars while Maddison zoomed around the neighborhood after having eaten Pizza for dinner. Its so sad how simple things like pizza and zooming around made me stress myself to tears so often back then. I'll NEVER forget the early days with Diabetes. EVER. I'll remember those emotions until the day I die. -Sigh-

I honestly never thought I would get to this "comfort" place we have found in our "new normal" lives. Of course we still have days where LOWS freak me out, like Saturday when Maddison called me from a friends house with a BS of 34. THIRTY FOUR!!! Is that number crashing or staying? Lows when Maddi is away from me ALWAYS freak me out a bit (or alot in this case) And sometimes ketones make me want to cry...but overall, Diabetes is a non issue and pretty well behaved. Tonight Im confident will be no different!!

((KNOCK KNOCK, KNOCK ON WOOD!!!!))

Time brings knowledge. Experience. Comfort. Nowadays we just do it. Bolus it, SWAG it, correct it, check it, bolus it. Bolus it. Bolus it. Move on.

Ok, maybe there will be ALOT more bolusing going on tonight, but chances are the affects of zooming through the streets to the next candy house will keep blood sugars on the lower side anyway. Tonight Maddison will eat too much candy like everyone else. I probably will too. Then each day after Halloween we get a yummy candy treat for awhile. I sort all the pure sugar treats and keep them for lows only. Then candy starts to secretly disappear without the kids even noticing! (evil laugh) Besides the fact that I WILL keep some of my favorites for myself, I'll also take some to work. Those ladies at work will eat anything! I throw ALOT away. Freeze some. Maybe send some to the troops over seas......Halloween is just another day with Diabetes, until bedtime comes of course! I expect to be up often tonight checking Maddisons sugar thanks to the combination of chocolate and her running wild in the streets, OH well!! Just another day in the life! Happy Halloween!!

Friday, October 28, 2011

38

Randomly over the past week Ive been waking up in the high 250's, which for me just doesn't happen. (lucky, I know) Then I began to wonder if maybe Ive been going low overnight, then rebounding thanks to Mr Liver. Which again, doesn't happen for me. (can you say denial?) Things are changing for my Diabetes over here. Im not liking what Im seeing. The "easy" Diabetes I used to manage, is no more. Now I have to actually do some logging and use some serious brain power to figure things out. Whether it be progression of the disease, or changing hormones from my Hysterectomy, stress, weather....I dont know. But it needs to be figured out. Quickly.

Ive taken note lately that Ive been having some night time scary feelings while sleeping....

The first one was about a week ago, I have no idea the time because I never actually got out of bed. I was still asleep, or half asleep, and kept telling myself I was low and I needed to wake up and get sugar NOW! But I didn't. Or, maybe I just couldn't. I remember my mind chanting to me..."you are low Kelly" "get up and test Kelly" over and over and over.

I never checked myself. I can recall several nights this same scenario happened. Im not sure why....I have still been checking Maddison at Midnightish and 3amish just like I always do (still half asleep) so why didn't I ever check myself? Am I really THAT asleep while I carry on the night time checking routine for Maddi?

So last night I slapped on the CGM and what do I see this morning when I review my recorded numbers?

1am blood sugar of 38

2am blood sugar of 58

3am blood sugar of 124

4am blood sugar of 170

5am blood sugar of 232

6am blood sugar of 268

All I can say is, they need to make these alarms louder! I never woke up when I hit the 38, but I'm eternally thankful MR Liver stepped in. Starting out my day with a seizure would have SUCKED. A coma would have F'ed up my mind FOREVER and dying from Diabetes would have RUINED my family. Screw you Diabetes.

Although Im shocked and irritated the CGM didnt wake me up for this low, Im thankful I have the technology. Thank goodness I put on the CGM last night, for I may have never believed this was happening with my sugars overnight. Now I have a starting point of where to make adjustments. Sometimes you have to SEE it to believe it. 38 can = 268. Who would have thought?

Tuesday, October 18, 2011

Caught Up

Two weeks ago hot flashes finally caught up with me! Damn surgical menopause. I really thought I'd be one of the lucky ones that gets off easy without needing estrogen replacement for unbearable symptoms. -sigh- Wishful thinking!

I guess I shouldn't complain since I haven't had any menopausal feelings sooner. It's already been over two months since my surgery! The hot flashes came on so suddenly one day that I thought I was sick. I didn't even realize at the time that I was having hot flashes! If you have never experienced a hormonal hot flash, let me tell ya, they are NOT exaggerating when they say they can become disruptive to your life! These hot flashes feel like a high fever. My face suddenly gets hot (like when you open the oven!) and then the heat travels down my neck leaving me drenched in sweat. No joke! By the time my entire body feels on fire, the chills decide to take over. Let's just say I look like a weirdo out in public, and I'm not sleeping well at night! It's crazy! I thought women who complain of hot flashes were just whiners....HA! It really is THAT bad!

I had no choice but to start the hormone patch. The first few days brought headaches, crazy blood sugars and laziness. I have now made it through the first week and I'm finally starting to feel better, I can sleep without waking up in a pool of sweat! But....my blood sugars SUCK, partly because I'd like to just eat all day. I think Ive already gained 5pounds this week! Stupid hormones. Right after surgery my insulin needs dropped dramatically, even with the infection and PE I developed......but now? This estrogen patch is kicking my ass with 300's here, there and everywhere. I'm increasing insulin across the board and it ain't budging! I'm supposed to manage Maddisons numbers through her teen years!? Ack!

It's a vicious cycle. High makes me tired. Makes me grumpy. Unmotivated. Headachy. Irritable. Lazy. At this point I don't know if the high blood sugars are making me a mess or if the patch dose just isn't right! Damn menopause has caught up with me!

On the other hand, I've been having blood draws every 10 days since my PE to check my INR. FINALLY after 8 weeks of adjusting my Coumadin doses they have me where I need to be. Apparently Coumadin is another medication that is strongly influenced by EVERYTHING. What you eat, stress, sleep, exercise, hormones.....sound familiar? Like I really needed ANOTHER crazy ass medication to manage. Sheesh! Im feeling a little irritated with my own body today, can you tell?

On the bright side, Maddisons numbers haven't required logging or changes for many, many weeks now. Diabetes has been our friend. But, this week Maddi is starting with some lows before lunch, so im sure logging and tweaking is right around the corner. Cooler weather is coming ya know......even though it was 96 degrees today, I'm begging for cooler days ahead, even if it means blood sugars may go bonkers for awhile!

My Hannah has been caught up playing for both the JV and Varsity teams at school, loving every minute of it. Last week she came down with strep AGAIN, just like she does several times when school starts each year. I think her immune system weakens when she has weekend tournaments along with weekday games, homework and practice every night. She is just steps away from having those dang tonsils removed....each time she recovers slower. In fact, She felt so sick this time around that she asked me to check her blood sugar. 114. Fasting.
No comment. Which reminds me of her last a1c when she tested for Mono last year.....5.5%.....technically considered "borderline." Again, no comment.....

I just can't get caught up in all that. So, we don't. We just keep swimming. Just keep swimming.......

Tuesday, September 27, 2011

Who knew moving could be DANGEROUS?

For the past 3 weeks if not at work, Volleyball games or driving kids around, I’ve been preparing our home for the big move! UGH. Moving is SO much work, especially when your hubby works 60hrs a week and has little time to help! Packing, cleaning, emptying closets, lifting boxes, pushing around furniture and more boxes, more cleaning, donating clothing, toys, JUNK, re-organizing....where does all the stuff come from!!?? Needless to say, the many days I spent preparing to move caused my insulin requirements to dramatically decreased to crazy low amounts! I had a temp basal decrease at 50% which equals a teeny tiny .15 per hour. My food ratio was at 40% at one point, but I would still go low. CRAZY! Too many lows lately means Im not really “feeling” my lows anymore, just feeling kinda off... kinda slow in the brain so to speak.

Lately I’ve found many, many low 50’s without too much of a symptom, that’s SCARY!! What if I waited to check until I REALLY felt low? What if I never developed a symptom and just passed out? With all this extra activity my Liver is surely depleted of any extra/needed sugar stores, then what? This reality is VERY scary when you really stop and think about it. Moving with Diabetes is a major challenge, it is SO hard to balance food, activity and insulin when you are zooming around 12 hours a day doing things you normally don’t do every day!

When I’m super busy like this I tend to not check my sugars much (except upon waking and sleeping) if I feel “fine” all day. Bad habit, I know! I’m just one of those people that HATES having to stop what Im doing and check my blood sugar! I’ve had to run myself in the 200-240 range to go to bed at night. I HATE having to run myself high to avoid lows! Running myself higher means I start to worry about my eyes, my kidneys, nerve damage...but the fear of not waking up to a low blood sugar after the crazy long hours of moving totally takes over the fear of future damage. So, high at night it is for now! It seems even dramatic basal decreases and a high protein/fat snack before bed don’t seem to touch my night time drops. So for now 200 is a good, safe number for sleep. –Sigh-

Then came the actual moving days...

Cleaning the old house, cleaning the new house. Lifting and moving all day on Thursday, Friday, Saturday and Sunday. What is all this stuff that fills a home anyway!!?? I further decreased my Temp basal a bit, and my food ratio was forced to just 10% after some lows kicked my ass after every meal. So then what happens? Im STILL having lows, and because I don’t have enough insulin in my body to give me the energy I need, I end up feeling totally drained and worn down. S-L-O-W. NO ENERGY! It was such a viscious cycle! I was surely not as productive as I could have been if I didn’t have to work my own pancreas!! Dang it. It is SO frustrating!!

What is really even more frustrating and SCARY? Being SO tired every night from moving I fail to wake up to my alarm clock to check Maddison. So, I have had to run HER higher in fear of HER going low and ME not waking up for EITHER of us!! –GASP- Moving is dangerous! How dangerous? Well, Maddi has been busier too. In the wee hours of morning last week (4am) the cat woke me up meowing. I had missed my 3am alarm to check Maddi....she was 44!!! Moving is apparently dangerous for us both! YIKES!

So, we are all moved in. Pretty much settled besides wanting to do a million things like paint some walls, plant some flowers, and start my winter garden. But for now I need a break. I'm tired. I never really had a chance to "relax" after being in the hospital before back to school chaos and moving time came around! Frequent lows are draining, especially when your body is adjusting to life without hormonal balance. (This hormone patch and I aren't getting along) So, a few more days of "normalcy" and hopefully my numbers will settle too.

We LOVE the space in our new house. Maddison and her doggies are in LOVE with having a huge back yard again, which means now Maddison is having more lows now too because she is always outside. I just cant win I guess. Hannah is in LOVE with the sand volleyball courts directly next door in the park, and *I* am in love with all the moving, cleaning, packing and unpacking being DONE!!

Wednesday, September 7, 2011

A Jealous Day

Yesterday I had several surges of jealousy that I must confess. It was weird how the whole day just seemed to be made up of one Diabetes moment of tough "reality" after another....

The Birthday Cake
I work for a small Medical Billing practice that truly adores its employees. Whenever a birthday rolls around, our Office Manager brings in cake to celebrate. How nice is that? We all gather and chit chat for awhile while enjoying cake! I LOVE my employer....too bad I HATE the J-O-B!! Anyway, being that I was the birthday girl this time, naturally questions about my Diabetes arise because everyone wants to know WHY do I still eat cake? Sometimes I enjoy educating, but sometimes I don't want anyone to even ask! I guess it just depends on my mood that day. (Ive been sick with a cold so Im grumpy!) My piece of cake was significantly smaller than the rest (by my choice) so a co-worker commented. And joked. And carried on. -Sigh- Another coworker asked how I can have T1 Diabetes as an adult....and another coworker mentioned how "normal" people take for granted just being able to sit down and eat anything they want. Oh, so true.

In the end, I just felt jealous. Jealous because I'd like to just sit down and not be questioned. Jealous because no one else "has to" explain what they are eating, and why its ok. Then, I felt guilty for feeling jealous!

The Cell Phone
Anyone with a child that has Diabetes knows how important good cell reception is. Our cell phones are our lifeline to our kids with Diabetes while they are away. Most of us D Moms check our cell phones many times a day just because we are afraid we missed "the call" from the school saying our child had a bad low, or is very sick from high blood sugars.....

Our office at work relocated last week. In the new office building I dont always get good cell phone reception....I NEED to ALWAYS have good cell reception while Maddison is at school!! Of course there are other phone numbers at work that I can be reached at, but what if those are busy!!?? What if Im in a meeting, or away from my desk!!?? It is what it is, and we just have to work with it, but thats not the point. I mentioned the importance of having good cell reception to my boss, to which she replied "Well, EVERYONE with kids had to give out alternative phone numbers too, its no big deal." And then, I felt ANGRY! Jealous! Because to parents with children that have Diabetes it IS a big deal to not have good cell reception! I was jealous because most people dont have to wonder everyday if today is "THE DAY" that the school will call me and cant reach me. Jealous because my boss just put my kid in the same category as everyone else's kid when we are SO not "just like everyone else" when it comes to potential school emergencies! Then I felt guilty for feeling Jealous, but Im still ANGRY about this one! Sigh-

At the Book Store
After picking up Maddison from school, I have to wait around the area for an hour and a half until Hannah's Vball practice is over because we live SO far. So, Maddison and I went to the bookstore. Right after arriving Maddison felt low. 72. She needed a snack. All I had was a smashed protein bar in my purse. She felt VERY low, so we had to sit around awhile until she felt better. I sat and watched all the parents with their kids zooming around the bookstore. I felt jealous because their kids could zooom around without Diabetes stopping them. Then I felt guilty for feeling jealous!

Just before we were about to leave the book store I ended up low myself. 54 with .6 still active. Wrong carb guess on the birthday cake! This low was a bad one. I ended up having to sit on the floor and pop glucose tabs while people looked at me like I was crazy. I just wanted to continue on my way and drive to our next destination, but I couldnt. I couldnt even stand, much less DRIVE. 20 minutes and a major headache later, all I felt was jealousy. Jealous that everyone around me can just drive whenever the heck they'd like without Diabetes controlling them. Then I felt guilty for feeling Jealous!

The Rec Center
Our next stop was to check out the Rec Center nearest the neighborhood we will be moving to at the end of this month.(YAY Glendale!)Maddison was SO excited to see their catalog of classes which includes....... cake decorating. Crap. More jealousy. I was feeling jealous because I cant just send my kid off to cake decorating class without thinking about frosting and blood sugars. -UGH-

The Swim Team
We still had awhile before we could pick up Hannah from practice, so Maddi and I just hung out watching the Swim team. Swim season is TOUGH with Diabetes, for us anyway. I felt jealous watching those kids swim so free without worry. I felt jealous seeing clean arms....no sticky dirty spots from pump sites to be seen. No juice boxes sitting poolside in anticipation of a low blood sugar.....all the things that are "normal" for us poolside, not to be seen here. I felt guilty for feeling jealous!

The worst part
And then, I was low again. As I sat chewing on grape glucose tabs I watched all the people on the second floor above me. The entire second floor is the gym. Talk about jealousy!! Oh what I wouldn't give to just jump on a treadmill at any time in the day without planning. Without having to eat something first. Without worrying about the lows the workout may cause while I sleep. By far the most frustrating thing for me with Diabetes is having to stop a workout because my blood sugar goes too low. It sparks ALOT of jealousy to watch all these people workout without a concern in the world. Lifting weights. The rowing machine. Running around the track. Oh what I wouldn't give to live carefree again.....

And then today was a new day. No jealousy. No hard feelings. Just a normal day with Diabetes taking the back seat in life. Exactly where it should be!

Tuesday, August 30, 2011

Liar Liar Liar

Maddison and I both had Endo appointments today. I braced myself for the highest
A1c's ever in our 5 years of Diabetes...

With back to school, a growth spurt, summer heat advisories, sloppy carb counting, and no pre-bolusing lately I was SURE Maddison would be AT LEAST in the 8 range. Current meter average? 196. Post breakfast numbers? 280's. Night time numbers?
280's. 10 checks per day show 80% out of range! This has been going on for at LEAST 3 weeks. At this point I'm ecstatic to see any number that starts with a 1. Maddison's basals have tripled in the mornings, her ratio's all decreased, yet her numbers haven't budged despite aggressive daily dose increases. CRAZY!

So, I mentally prepared myself for todays appointment. I was fine thinking Maddison's A1c was going to be the highest ever. Really, I was. I know Im doing my best, aggressively making changes....I know A1c's dont always reflect the time and effort you put in to managing the disease... So, today when I heard Maddison's A1c was 7.2 (by finger poke)I just shook my head. There is NO WAY that is accurate. It just isnt. How can you have higher numbers consistently for weeks and weeks and get a lower a1c than when 80% of numbers were in range? UGH. I dont trust those finger poke A1c's! There is no way!!

Mine? I expected a number in the 7's. After my surgery, pelvic infection and Pulmonary Emboli I can tell you I havent given my Diabetes ANY effort lately. I bolus and check blood sugars, but thats about it right now. Ive had horrible blood sugar spikes after eating lately, I feel low at 100, and my numbers are running about 60-80pts higher than usual....yet my A1c came back at 6.8% Ummm....NO WAY!!!

For real? Are you kidding me? There is NO WAY these A1c's are right! Both Maddison and I are seeing numbers far above what we have ever seen, yet our A1c's are still pretty much in the same place as they always are? In fact, Maddison's A1c is now LOWER than it was in May when I was SURE it would be her lowest A1c ever! ACK!!!

Whatever. Its just a number. I guess I should be happy that our A1c's didnt come back crazy too high like I expected....but I just doubt the accuracy and THAT drives me crazy!!

I still have ALOT of adjusting to do, for both Maddison and I. We have gotten sloppy and lazy over the summer. Pre-bolusing needs to come back, thats step #1. I'll just stick to trusting our meter numbers thank you very much, and adjust as needed with the number I can SEE!!

Sunday, August 21, 2011

SCHOOL, HANNAH, BIRTHDAY and 7 DAYS!!

School is back in session as of last week, so craziness has ensued with chasing numbers, as always! It never fails to amaze me how Maddison's insulin requirements SOAR when summer ends and school is back in session! The first 2 days of school brought Maddison consistent numbers in the 300's and high 200's, so I aggressively flipped basal dosing back to our old school pattern from last year...AND......

Day 3 was MUCH better!! Almost there! A few more changes and by day 4 of school this week numbers were in range all day! HOORAY! By day 5 of school (Friday) Maddi's numbers were a bit higher, likely due to a 3 day pump site after recess in the 110 degree heat before lunch every day! So now we start again tomorrow. MONDAY! Who knows what this week of numbers will bring?

I know BOTH our A1c's this month will be the highest ever! But ya know what? Its been a hell of a month and we still have a couple weeks left......its never too late to get back on track!

On Tuesday the 23rd my Maddison will be 11!!!!! I cant believe my Maddison is going to be 11!!!! I can see it in her blood sugar numbers, she always grows crazy inches every year right around her birthday. I think this might be the year I start chasing pre-pubescent blood sugars!!! -GASP!!-I do think my Maddi is now considered a TWEEN?!

Did I mention my Hannah made the VARSITY Volleyball team at her new school?! She sure did :) Our first game of the school season is Wednesday! I cant wait to see our new team play! Hannah has been training SO hard since the start of August for this team....its gonna be AWESOME to see my Hannah play this year as a Sophomore for the Varsity team!!!

In case anyone hasn't heard the scoop....

Rewind to August 7th, 5 days after my Hysterectomy I still continued with fevers so I was urged to go back the the ER AGAIN!! (3rd time) by my Doc. I had already been placed on antibiotics for a UTI post surgically and STILL ran a fever. I otherwise felt fine. No pain. Incisions good, recovering well. Blood sugars great, even without having any appetite. After much arguing with my Doctor, I went to the urgent care instead of the ER. I DID NOT want to end up Inpatient again! I really felt fine, even though the fevers were draining! I figured at the urgent care I could just get a new script for a different antibiotic. Wishful thinking. NOPE. The Urgent care showed no infection in my urine.... WHAT? I dont understand? So, the urgent care Doc insisted I go to the ER.....

UGH. I knew then that I'd be staying in the hospital again. Damn it. School was coming too fast! I dont have time for this!!!! We can't afford to take FMLA for this!!!

So I had my Mom drive me to the ER. (Hubby was working out of town) I figured I most likely had a pelvic infection from surgery. Maybe some IV antibiotics a day or two and I'd be good to go? UM.....NOPE.

In the ER my labwork showed nothing unusual indicating infection. Why the fevers then?

Apparently my D Dimer result was extremely high. A high D Dimer result indicates that there may be significant blood clot (thrombus) formation and breakdown in the body. WHAT? A chest CT scan was done, and there it was.....my CAT scan showed a Pulmonary Embolism.

By the time I made it upstairs to my hospital room it was 3am. I couldnt sleep. I wasnt even tired. (or so I thought) I couldnt believe the ER just caught a potentially FATAL embolism....in my lung! There aren't really any words to explain how I felt at that moment. I wasn't scared...I was mostly shocked. In denial. I must have asked the ER doc 10 times if he was SURE I had an Emboli!

All by chance this was caught early. So naturally, all the what if's began to play through my mind....

I never knew your mind could be SO wound up and unable to sleep. I mean, as parents with "D" kids we all get wound up from time to time and cant sleep from the stress and worry of it all.....but this was different. I think I ended up going 32 hours before asking for something to knock me out so I could sleep. This level of anxiety was CRAZY!!!

A few times during my 7 day stay I had random chest pains which called for EKG's, Oxygen and Morphine. Each time I was sure I was gonna die, Im not even being dramatic!! I really thought my life was played out, ending in death by complication of surgery. I really did. It was horrible. You try to always think the best, but when someone else is in control of your life you can't help but feel worried, scared and unsure. Each day isnt a promise for tomorrow.....

My heart rate during my hospital stay eventually became elevated because of the emboli, which made me feel like my blood sugar was low. My blood pressure ran continually low (90/55) so it was a struggle to walk around more than a few minutes at a time. Otherwise, I felt pretty good considering! I was in GREAT shape considering all the illness in the rooms around me! The heart/lung floor is NOT where I EVER thought I would be! Hacking and coughing in all the rooms around me. A CODE ALERT here, a CODE there......for my health I was never so grateful!!!

So, 4 days after being re-admitted I STILL had fevers. The Infectious Disease Doc was called in. I ended up having a CT scan of my abdomen and pelvis done (FINALLY after I asked 3 times) which revealed several "cyst like abscesses." More IV antibiotics. A few more days in the hospital, and by day 7 I FINALLY went home! Unfortunately I missed the first day of school for the kids, but I made it home in time that day to surprise them!

7 days is a horribly long time to be away from your kids and husband! 7 days is a horribly long time to sleep in a hospital bed with pokes every 4 hours around the clock! 7 days gave me the opportunity to lay around thinking about LIFE.... How lucky I am, how horrible this complication could have been, how saddened I was for the illness surrounding me, how thankful I am for each and every day I have on this earth!

7 days is a horribly long time to eat hospital food, especially the "Diabetic Diet." 7 days caused me to loose about 7lbs, and now I look sickly!! ICK. Drained. Pale. Tired. I have a long way to go. Im so totally out of shape, turned to mush and feeling it! Ive been home from the hospital for 6 days now, and as of today (3 weeks after surgery and complications) Im finally feeling near normal for the first time! Im having labs drawn every 3 days until we find the right dose of Coumadin to maintain my levels (normal is 1 but they want me at 2-3) and I'll be on the Coumadin therapy for at least 4 months. We re-check the Chest CT scan in two weeks to make sure the Clot is decreasing in size, and I get a repeat Abd/Pelvic CT scan in 3 weeks to make sure the 2 antibiotics Im taking is helping the abscesses.

Its been a VERY long 3 weeks!! Im ready for my "normal" life now, no matter how crazy that might be :)



Saturday, August 6, 2011

Surgery, Post Op and the ER

Those silly doctors are quick! One minute you are laying in your hospital bed waiting for the OR Nurse to start your IV, and the next minute you have an IV, 10 vials of blood drawn and a team of doctors around you. When it starts to happen, it HAPPENS! I hardly had time to be mentally prepared. I guess its better that way....here is the low down on my surgery and how Diabetes has(mostly)cooperated!

CGM attached. A HUGE help. Surgery morning after nearly 2 full days without solid food I woke up with a BS of 65 although I temp basaled my way up to 170 the night before. I had no choice but to pop 2 glucose tabs and disconnect my pump for a bit. It all worked out fine. For surgery I set a temp basal of 40% (per the Anesthesiologist) and stayed from 110-150 during the entire 4.5 hour surgery. I ended up having endometriomas of both ovaries, but the suspected severity wasn't as bad as once thought. (HOORAY!) Just 5 one inch incisions were needed to get all the girly goods out! I also signed consent before surgery to give my girly goods to research focused on Endometriomas. (I thought this was pretty cool!) In all I had my Uterus, Cervix, Fallopian tubes, both ovaries and Appendix removed. I also needed a Cystoscopy for issues the Endo caused with my bladder. OUCH!

A surprising thing about my Anesthesiologist...she made a HUGE deal about me having T1 "Juvenile" Diabetes and was literally in Awe of someones choice to manage with an insulin pump. She kept saying how "uncommon" it is to see T1 Diabetes, especially someone that manages it while maintaining "great health." She went on and on about how her cousin was dx'd as a teen and is a total MESS. She kept saying how she believes being diagnosed as a child is the "key" to living well with Diabetes, because kids are so adaptable compared to teens. It was interesting to hear her babble on about "Juvenile Diabetes" (she was a supper bubbly talkative type) as she slipped me "something to relax me" into my IV. That was the last thing I remember, and I woke up in my room upstairs all nice and comfy! (hooray for avoiding the damn recovery room!)

I was up and eating dinner (STARVING!) 4 hours after surgery that night. My blood sugars were steady around the 160's which I was fine with. I didnt want to deal with low blood sugars with everything else going on. I felt pretty darn good until the anesthesia wore off completely. Im always reluctant to use pain meds, but decided the Morphine pump was my best friend within a few hours :) I was discharged the following day, just 28 hours after surgery. Never saw a blood sugar over 180 :) I did feel a bit nervous going home so soon...I guess I should have taken the option to stay another night...

Two hours after I got home my face felt hot. Hot eyelids. I thought maybe it was hot flashes. NOPE. I spiked a fever. (even after 600mg of Ibuprpohen was taken routinely since surgery) which made me realize they didnt even write me a script for preventative antibiotics! Why would they do that? CGM alarmed at 250. Corrections wouldnt budge. Ketones, HIGH. I know some degree of a raised temp is expected after surgery....but this was not good! Somehow seeing the high ketones instantly made me feel like crap. Funny how that happens!

Without much thought, I just said screw it! Im not going to take a chance on infection and DKA taking over. I didnt have the energy to deal with that possibility, so we went back to the hospital as recommended by my Endo. I waited about 30 minutes in the ER until I had cultures drawn and a chest xray. I was stuck in a secondary triage area in the back of the ER with just a recliner chair to sit in. No privacy AT ALL, surrounded by the war zone of all bad ER nights you could imagine. Yeah, I dont miss working in the ER at all, and RN's never fail to amaze me!

I still feel like the ER was the best place for me to be, I have a real fear of DKA and loosing control of my Diabetes even without this major surgery!

So, at this point my pump is set on a 50% basal increase and Im only going higher. My super awesome ER nurse came back to say it looked like a UTI may be the culprit. (Damn catheters) She started an IV and gave me some Morphine (even though I didnt really have any pain) some anti-nausea meds, and a big fat dose of Rocephin.

Within 10 minutes I felt weird. Just weird. Everything went quiet. I kept saying to myself that I hadn't felt this way earlier with Morphine AT ALL. I asked Josh to check my blood sugar as I started to feel a sense of panic. I was 230. I felt like my blood sugar was crashing. I felt like life was being sucked right out of me. I was thinking maybe the meds and fluids were freaking out my numbers. My chest tightened. I felt smoothered. I began to cry uncontrollably, sobbing, without notice. My tears burned my face, and tasted like acid. I told the Nurse my symptoms, and she said all my vitals were fine....but she could hear my panic. Then my pulse rate more than doubled in an instant. All I could hear was BEEPING BEEPING of the monitor, and Nurses running around me fumbling through drawers and calling for the ER Doctor. I was yelling for Josh to check my blood sugar (I wasnt even thinking allergic reaction!) and telling the Nurse to get me D50. I said it over and over and over, while telling her I wasnt sure that was what I needed. My body began to shake and tremor out of control. My legs were the worst, violently flying up, down and around. Talk about abdominal pain! I was SO freaked out inside. Totally aware of what my body was doing, and unable to do anything to help myself. The last blood sugar Josh took was a 180, and D50 was given almost in an instant. It never even occurred to me I was having an allergic reaction, it was a Hypo that I feared. Actually, I still dont really know what happened!

Josh and the Nurse took off RUNNING with me in my recliner chair down the hall to a REAL ER bed after Benedryl was given. I was crying out loud saying "I need more
D50, I need more Benedryl!!" all the way there while my body "seized." Josh threw me onto the hospital bed (seemed like it anyway!) while the Nurse zoomed around somewhere. When she returned she hit me with a dose of Ativan and I just pleaded for Josh to hold me tight while I shook. Suddenly I'd stop shaking. I'd think about the sound of a flat line, and a code being called in ER. I was sure sure I was going to die, or any second be in a Hypo coma. I kept saying in my mind "My girls need me, my girls need me." Then the violent shaking would start again. It seemed like an eternity that the shaking continued, although it was probably only 15 minutes or so. The Ativan knocked me out quickly. (Thank goodness) and I woke up the next morning at 6am. Blood sugar of 168.

I felt pretty darn good considering. I walked alot that day. I spent the day in bed with Maddison and Josh by my side. (Hannah had vball camp) I was kinda just there to get an IV dose of antibiotics I guess... The nurses kept asking me if I was ready to leave by the end of the day. SHEESH. I managed all my numbers and meals, mostly hanging out in the 130-180 range. At one point I hit 260 (after lunch!) so they called in the Internal Med doctor who questioned why I was "so high." How irritating! The nurses used my own BS readings for their logs, every 6 hours. I left the hospital that day, AGAIN about 28 hours after being admitted.

Today is day 4 post OP. I avoid the pain meds. Not much pain! The only pain I have is from the Dioxide gas still floating around my abdomen, chest and shoulders. My tummy feels like an aquarium with bubbles all around! Incisions are tender and my tummy is distended as though Im 7 months pregnant...but I feel pretty good! CGM is flat lining for the past 4 hours at a nice 146. I guess I should get on that and get my numbers down a tad since Im feeling better....-sigh- It would be so much easier WITHOUT Diabetes.

Thanks to everyone in the DOC for the well wishes! I survived all the chaos and apparently started an allergy list! NO ROCEPHIN for me!!! But yes on the Ativan!

Monday, August 1, 2011

7am!

At 7 tomorrow morning I'll be going in for my Hysterectomy! If all goes well and they dont find too much craziness in there I should be out after 24 hours, thanks to advanced robotic laproscopic procedures! But, if things are icky in there and Endometriosis has caused bowel involvement I could be in for some pretty horrid stuff like a bowel resection! Today I started on a PEG pre-surgical drink to cleanse the bowels just in case. Gross, I know! For 7 hours I had to drink 8oz of this ickity mixture every 20 minutes. Then ya know how the rest goes. Well, I survived! I havent had anything to eat in over 27 hours and Im a nice flat line 113 on the CGM. Finger poke verifies at 108. Ive been blessed to see flat lines all day, hitting 125 at the highest point. Ive been wondering lately if I need some basal adjustments....I guess not!

Tomorrow my plan is to bump myself up to around 150 then decrease my basals by 30% during the surgery, and until I am able to manage my numbers myself. I SO hope this CGM stays accurate! I always clue the Anesthesiologist in on the CGM and ask that they check my sugar 30 minutes in to the surgery, then each hour after. We shall see how this goes! Im off to bed now, hoping I can sleep! Lets believe this will be a "simple" surgery! I'll post soon, even if Im all drugged up!

Wednesday, July 27, 2011

He gets it

Today I had a pre-surgical appointment with the Surgeon that will be doing my Hysterectomy. Does it sound bad if I say his age worries me a bit? He must be around 35. Maybe 38. His demeanor is what gives it away. He seems like he is fresh out of Med school, though he has been in practice several years. To me, I say experience is what counts......

All I keep hearing when I look at him, is my moms voice. Her voice, like the day she told me the story of my own birth as a child....

I was a twin. Born at this SAME hospital where my Hysterectomy is scheduled. I was early at 32 weeks gestation. 1977. Prematurity was still not managed as it is today.

My identical twin sister was delivered a few minutes before me. She was the strongest of us two, the one expected to survive. Sadly, she died from "stomach bleeding" just 5 days after delivery. My Mom blames herself, still to this day. Nearly 34 years later.

My Mom to this day feels the inexperience of the delivery doctor is what caused my sisters demise.

Something we will never know for sure.

What doesn't help is that this doctor pushed tube feedings with formulas, when all Mom wanted was to breast feed, to give her breast milk to her tiny preemie child. GUILT. To this day my Mom feels guilt. Guilt for not listening to her heart. She feels like giving in to formula feedings is what caused my sisters demise, even though it is not likely.

Ive always been told to trust my heart......

To this day Mom feels responsible her child didnt survive. Moms heart told her one thing, while a doctor told her another. And she listened, all trusting. Who is to say what really happened?

I always worry I will be all to trusting. Like we were when my Dad signed consent that day. Consent for a surgery that we knew in our hearts he could never survive.

To this day, its hard for me to trust Doctors. Its hard for me to trust healthcare, after what we endured with my Dads last hospitalization.

Ive seen another side. Another side we all like to think doesnt exist.

I know it is silly. I know Dads demise was an entirely different circumstance than what Im facing now. But it all feels the same at this moment.

Im not so trusting.

To remove my ovaries and proceed with HRT? Who is to say that is the right decision? For a T1 34yr old woman with Hyperthyroidism and family history of heart disease, breast cancer and stroke? Who is to say?

This doctor is young. Very young. His experience is lacking for my trust.

But his Super is one of the top advanced GYN surgeons in the WORLD. For that, I feel safe.

After my pre-surgical exam today I met with a hormone specialist. One last appointment before they approved my Ovaries to be removed. They wanted to be certain I knew what to expect for a woman of my young age. I confessed my fears of losing control of my Diabetes with HRT....

Do you know what he said?

He said he understands.

His son was dx'd with Type 1 Diabetes at the age of 2.


WHAT!?

He understands! He REALLY understands!

My heart felt sure.

My heart felt safe.

I have a doctor that gets it.

Really gets it.

So what do I say?

I say I follow my heart.

I WILL be ok in the months/years to come. Because this Doctor understands the complexity of my/our decision.

Because he gets it. He knows.

He must be sent from heaven above.

:)

Tuesday, July 26, 2011

Alone

2am. Im fumbling for some type of sugar stashed on my bed side table.

Struggling to awaken from a deep sleep.

I cant sit up.

I dont have the strength or energy.

The only thing that pushes me on is my rapid heart beat and sweat on my pillow.

I know I'm extremely low, I need sugar NOW. I can hear my mind chanting.

SUGAR. YOU NEED SUGAR. SUGAR, NOW!

My bed is empty. There is no one to notice I need help. Im alone.

ALONE.

The worst feeling of being alone is at night when a low blood sugar strikes. I rarely have lows at night, likely because I refuse to go to bed with any active insulin from meals or corrections. But, if I do go low at night, they strike with a vengeance.

32.

The worst lows are the lows that wake you from your sleep. There is nothing like the fear they inflict. Especially when you are alone.

No one to help my confused mind. No one to comfort me past the fear. No one to assure me I will be safe.

My husbands shift typically starts somewhere between Midnight and 3am. Sometimes he lays over out of town, or is gone a couple days at a time.

On these nights Im especially careful. I reduce suggested corrections, to assure that Im safe to sleep.

Last nights low was treated with 3 glucose tabs. I hardly remember. I fell back to sleep with chalky half chewed tabs in my mouth. I never rechecked. I couldnt pull myself from the grips of deep "sleep". The only energy I had was to reach for sugar, and chew.

I jolted from my sleep at 6 this morning, fearful. Not sure if it was just a dream. A quick check of my meter showed it was all too true. And dangerous.

I also slept past my 4am alarm for Maddison's recheck after a correction. Now I feel like a pancreatic failure, putting my child at risk because of my own "issues." ALONE at night with Diabetes x's 2 makes me fearful sometimes.

I've been thinking alot lately about what my upcoming Hysterectomy will do to my blood sugars. My hormones will surely be whacked for awhile. The stress of surgery physically and mentally are sure to cause my sugars to go astray, which leaves me feeling very alone at this moment. Anticipating. Wondering how I will manage. I'm trying to make the right decision as far as HRT. I dont know what to expect. I dont know what is right for me. I'm Anxious. Worried. Diabetes makes everything so much more complicated....

Monday, July 25, 2011

The answer/How we do school with "D"

In years past (while at school) Maddie has never carried around anything D related(except a spare meter and candy in her backpack for the bus ride home) because the Nurse’s office was so close to her classroom. The teacher would call the Nurse if Maddi felt low, and the Nurse would come to the classroom within seconds with her school meter and low treatment. If the Nurse just couldn't leave her office, Maddison would simply walk down a long hallway (with a buddy) to get to everything she needed. Quick. Easy.

We were VERY lucky to have a FT RN AND FT Aide all these years!!

Now as we change schools this year and Maddison grows older, I think she needs to be in the habit of carrying her own D stuff at school. But, ONLY if it can be disguised! (not that we hide our Diabetes, we just dont like extra attention!)

I hate to think that Maddison has to carry around a big ‘ole medical bag at school when all the other kids are so carefree. I hate to think that kids will ask questions about her D kit which may annoy her, and I hate to think she will be embarrassed, feel different or stared at because she carries a purse or “medical bag” around at the age of 10. Starting a new school is not the time to draw attention to yourself either, especially at this age when you just want to blend with the crowd! I don’t want to make Diabetes a bigger issue than it needs to be. I just CANT have Maddison carry a big ole bag everywhere she goes! So the answer is....


A TUMMIETOTE BELT!!!

Thanks to the Tummietote insulin "pump pack" as we like to say, Maddison can place a meter, poker and a couple strips with glucose tabs right in the two extra pockets!! The best thing yet is that this insulin pump pack lays flat against her body unlike most insulin pump packs! You cant even tell she is wearing it under most clothes, and she wont EVER be without everything she needs! With the Tummitote Belt Diabetes is Discreet!! No big, embarrassing bag to carry around, forget or lose!

Im excited that for the first time in 6 school years Maddison can carry her own D supplies everywhere in her WEARABLE perfectly invented "TUMMIETOTE BELT!!" No Diabetes bag to carry around!!! (Thank you Tallygear!)

For us, this is the best insulin pump belt EVER, because it can carry so much more than just your insulin pump! It has 3 super Velcro secured pockets, and is made out of swim suit like, stretchy material so it lays perfectly flat against the body compared to most insulin pump packs! One of our 3 pockets on this pump pack has a clear view window so you can use the pump without having to remove it from your pocket everytime! This school year this pump pack is going to be a total blessing in DISGUISE! For us, Tummitote is the answer to keeping Diabetes discreet at school just like we want it to be!

HOW WE DO SCHOOL WITH "D"

The initial plan this year for managing D at school is just a tad different as far as lows. Instead of Maddison waiting for the school nurse to come to the classroom for lows, she will check RIGHT AWAY by herself if she feels the need (using her meter stashed in her Tummietote!!) and take the needed glucose tabs (by cheat sheet) for the low BEFORE walking to, or notifying the nurses office.

The question is, are we ready for Maddison to deal with the low recheck number herself, or do we still need the nurse to oversee what Maddison decides to do next? Bad lows can make Maddison very anxious, and she would likely recheck a low too soon and over treat, even if she has a D cheat sheet to go by. Hey, I cant blame her there! Sometimes the sense of panic (rapid heartbeat) that a low inflicts leaves you stuffing eveything you can find in your mouth! Overtreating is hard not to do sometimes! Sometimes these scary lows make you feel like you are afraid to be alone......Id hate to have Maddison feel alone and scared in class. I can picture her sitting there near tears, with everyone staring at her. Shaking. Pale. Unable to focus. So, maybe its best she does go to the nurses office for every low? I know that for myself I dont want people staring at me as I struggle to keep my composure with a terrible feeling low!

Then of course, lows always have different circumstances. Maybe Maddison ran low all night for whatever reason and needs more fast carbs for the low? Only I would know that. A cheat sheet isnt perfect, and the school nurse can only be as good as a cheat sheet is written. We can't always include all the "IF"S in a written plan! Maybe Maddi has 0.00 IOB and just needs a 4c boost? Its too hard to say if .3 is active treat with THIS, and if .8 is active treat with THAT! I dont want to confuse the nurse, or Maddison with TOO MUCH detail!

Maybe I just changed basals and its obvious something is WAY off? Maybe Maddi is just an hour after a meal and should wait a few minutes and recheck that low feeling because she is going UP, not down? 8c, 12c or 15c at different times has been confusing for Maddison to grasp when we base so much on IOB. There is always so much to take into consideration. School is not the time to be Chasing numbers and over treating lows. It is critical to get low treatment right at school, or the whole day can be a mess with headaches and fatigue being the result! Im not sure yet if the Nurse would be able to come to Maddison for low followup either, and I'm not sure how far her classroom will be from the nurses office! SO, Im still stuck on what will work for low protocol this year!

Maybe I'd like Maddison to manage lows herself by text message to me? This is probably the best answer since a new school nurse would have to learn Maddi starting all new, whereas our school nurse of 6 years pretty much KNEW what Maddi needed based on experience. What I do know is, I want Maddi carrying her own D stuff and I want that low checked by Maddison immediately as it should be. No more waiting for the Nurse!

We will have 4 T1 kids at our new school this year which includes Maddison. Two are teens, and the other little girl is Maddies age! We actually met her through a neighbor and introduced her to our local support group a couple years ago right after she was diagnosed. She attended our support group Christmas party with us that year, but we haven't really seen her since. Its nice to know Maddison is familiar with someone that has "D" at her new school!

School and Diabetes is a very tough balance. You want to limit missed class time, but also not draw attention to Diabetes care or "disrupt" the class. You also want your child to feel comfortable and safe. PE days are always tricky, and recess is BEFORE lunch this year. Hmmm.....

Typically I like Maddison to check her sugar 1.5 to 2 hours after getting to school in the morning because by then her breakfast insulin is about 80% used. Maddison goes to the Nurses's office for all scheduled checks. Morning, before lunch, before PE and 2.5 to 3 hours after lunch.

For lunch Maddi gets half her carb count bolused up front with a correction if necessary. If she is under 80 starting lunch she just gets all carbs bolused AFTER. (which I hate) But, Maddison is a VERY picky eater, and never big on the lunchtime meal, so this has been the only way we can safely do lunch at school. Maddison then has to return to the Nurses office with any eaten/uneaten food for a remainder bolus, if any. For Maddison this has always been fine because she doesn't care about missing recess either.

I think this year with recess being before lunch, I will have her check her sugar before recess. She can then treat a high or low if needed on her way to recess, without having to go to the Nurse first. Then she can just use the recess number to bolus part of her lunch (15c maybe?)and go to the nurse for the remainder bolus after eating to confirmation that she got everything taken care of just right. (Thank you bolus history!) I dont know. The plan doesn't always work the way we want it to. As always, my brain is starting to FRY just trying to plan the new school schedule! 5th grade, here we come!Just 3 weeks left of Summer vacation!

School!

Maddison will be entering 5th grade this year and Hannah will be a SOPHMORE!! Last year at this time I was going through some major ”midlife” crisis issues as Hannah entered High school. Somehow having a child in HIGH SCHOOL made me FREAK OUT. (yes, I AM the perfect patient for anti-anxiety meds!) I worried about boyfriends, peer pressure, drugs, new crowds, what would happen with old friends, parties, all kinds of high school stuff. UGH. It was a tough time for me with a lot of life realizations being made. I cant help but wonder already what will happen with Maddison at that age? High school is hard enough without Diabetes, I get nauseated just thinking about this!
–Sigh-

Luckily my Hannah didn’t go wild like I did (a little) when starting high school. She stuck to pretty much the same AMAZING group of girls that she grew up with, all of which also ended up playing for the school Volleyball team. Hannah made the JV team, and WOW OH WOW did her confidence and pride for her school SHINE! But, sadly (with some excitement) Hannah will be going to a NEW high school this year!! Hannah is excited because their VBall team is AMAZING and the JV coach is a long time family friend. (Hannah also has several friends there already) So this is something Hannah looks forward to. And guess what else? This is the same High School I went to!! How weird is that to have your kid graduate from the same high school!!?? Our plan when our lease is up (October during school!) is to move closer to work, and closer to family.....so, both kids will be starting new schools this year on a variance until we find our new home! Yiiikkkkeeesssss!!!!

Maddison is without a doubt, the main part of this moving decision for us. Educationally she isn’t where she needs to be in some areas, even with her IEP. It took 4 years for me to get the damn school to identify that her struggles were related to a learning disability, NOT her Diabetes and NOT an “emotional disorder”! Educational screening always came back that Maddison was achieving, exceeding (or “borderline”) in some areas. However, this screening never took into consideration that Maddi repeated 1st grade (based on parent choice) and was still struggling to “meet” expectations in some areas by 4th grade. Maddies “test scores” year after year (and her IQ) always showed above average, yet her class work and grades suffered. HELLO! She wasn’t meeting her class expectations because she needed additional instruction and was lost in a class of 35 kids! Test scores aren't everything!!! Anyway, that’s all another story, and a VERY long, boring and frustrating blog post for another day!!

The point is, Maddison was dx’d with Diabetes in first grade, so the school always blamed her struggles on missed class time for D care and “her personal struggle with Chronic illness.” UGH. So TOTALLY NOT my child! She was NOT the same person at home as she was at school!!! FINALLY this past school year Maddi’s LD was officially diagnosed, and at this point I just want to start over!! And, so does she. So now we are, even if that means leaving behind the greatest school Nurse EVER! It breaks my heart to take Maddison away from her school nurse who has helped us kick “D’s” butt since 2006, but Maddison is so much older now and able to safely take on more daily D care without constant supervision, so I know now is the time for CHANGE! Such a bittersweet reality! 2 new schools in a new District this year! I'm starting to feel the stress of preparing for back to school with "D"!!!!!

Monday, July 18, 2011

Authorized

August 2nd is the day.

Ive almost called to cancel several times in the past week...but I know Im at the point that I cant put this off any longer. To say I'm a bit nervous is a total under statement. I dont even know if I'm making the right decision, although my Doctor assures me this is for the best.

I received confirmation in the mail today that our insurance has authorized my Hysterectomy along with up to 5 days Inpatient. Great. Now this is really gonna happen I guess. All I keep thinking is....

What is this surgery (with removal of both ovaries) going to do to my "well mannered" Diabetes? Losing "control" of my Diabetes is my biggest fear in this entire world (besides losing control of Maddison's) which is mainly the reason I have delayed this surgical decision for the past 5 months.

A Hysterectomy is hard enough without Diabetes.

A Hysterectomy is hard enough without high blood sugars.

A Hysterectomy is hard enough without low blood sugars.

What happens when your female insides are all yanked from the body? I'm guessing I will be a hormonal mess for awhile. I still have no idea what I want/should do with HRT. Does this Hysterectomy mean I will surely ride the D rollecoaster? Am I inflicting craziness upon myself? Sheesh. My "normal" hormonal mess is bad enough....but a D mess on top of that? I'm not sure I'm prepared for this....

But, I have to remind myself why I cant put this off any longer.

Im anemic. I've had two ruptured cysts in 5 months that nearly sent me to the ER in excruciating pain. I have back pain that travels down both legs. Almost every day. Pelvic pain. Every day. I have totally random bloating that leaves my normally flat stomache looking like I'm 7 months pregnant. My Endometriosis is getting worse, not better. Even 3 surgeries and 15 years later. Whatever has taken residence in my Uterus isnt going to just disappear, and my poor enlarged ovaries (CA-125 was negative) both have Endometriomas that I can literally FEEL twitching and growing some days. OUCH. Gross, I know. The list continues....but I will spare the details.

So August 2nd it will be. PERIOD. I'm NOT rescheduling, no matter how much I freak out about the expense, missing work, or my Diabetes. Its time to take care of me. Again. I just realized this is starting to be a sucky pattern each August. Last year at this time I had half my Thyroid removed, and the year before that I had two breast masses removed. GEEZ. It seems my body likes to produce masses that cause some initial drama, and then it always ends up being nada. I'm tired of surgeries. Maybe removing my ovaries is the answer? I sure hope so.

So....can I just throw up now? Lets get this over with.

The day after my surgery the dear Husband is going to have to attend my appointment to register Hannah for her new High School. Did I mention school starts
August 15th? Am I freakin crazy!!?? I keep telling myself I need to reschedule this surgery....I cant possibly get the school year off to a smooth start with 2 kids in 2 new schools while being a hormonal (and possible blood sugar mess!!) Back to school is VERY stressful with Diabetes....and Maddison is attending a NEW school this year with new teachers, all new kids, a new school nurse, with a new IEP!! OH MAN. School shopping, IEP meetings, meet the teacher, educate the staff, sit in education with the school nurse....

This surgery isnt the best timing. But it has to work. It just has to. No more delaying what needs to be done. No more pretending. August 2nd it is.

Monday, July 11, 2011

30 miles

60. Twenty minutes after eating breakfast. I’m 30 miles away at work when the text comes in from Hannah.

A sudden rush of fear takes me over. Just like that.

All from one number, and then the what if’s set in.

I quick send a text back to Hannah that Maddi needs 3 glucose tabs STAT. The “ok” response from Hannah seems to take an eternity as I anxiously wait.

My heart pounds, knowing Maddi just bolused for her breakfast not long ago and has somewhere around 3.8 units of insulin beginning to work in her system. Maddison’s insulin is working faster than her food is absorbing, (or her basals are off) which could mean disaster if not tended to immediately.

Im 30 miles away at work, hoping and praying that glucose tablets will solve this potentially very dangerous situation. When I'm home with Maddi and lows happen its not such a big deal, but put 30 miles between us and I lose my cool. The what if's ALWAYS get me. Co-workers around me can see my worry, but they don’t really get it. They dont realize that the same medication that keeps my child alive and healthy every day can also kill her. If timing is wrong. If the dose is wrong. If carbs are counted wrong. If the pump fails to deliver, or malfunctions and delivers too much. If carbs aren’t absorbing due to impending illness, or because a high fat/protein meal slows it all down. Or, maybe today Diabetes just decides that she needs less insulin than yesterday. It’s a dirty game this disease plays!

I begin to wonder....what would happen if Maddi didn’t feel that low? Would Hannah stay calm if Maddi had a seizure? Would Hannah use that massive Glucagon needle to save her sisters life? Would the Paramedics get there in time?

15 minutes later I called Maddi back. She’s 141, and I sigh a deep breath of relief. Disaster averted. This low was an easy fix. Back to life we go. Just like that. We are amazing, us families with D. We keep our children alive, every-single-day. We get kicked down in the blink of an eye, yet always find our way back up. 24/7/365

Now I'm left to wonder what happened. 9 times out of 10 there is a "reason" something goes wrong with numbers. If there is a reason, I WILL find it. My guess is Maddi didnt check her sugar before she ate and bolused for breakfast. My bad. I told her when I left for work this morning that she was 138 and "good" I said, which to her (she explained) meant she didnt need to re-check her sugar before eating....fine most days...but today she didnt eat breakfast for another two and a half hours after I left! THAT to me is the "reason" for Maddi's low this morning (basal set too high!) and she must have been hoovering in the low range when breakfast started and insulin was bolused. Well, it sounds right to me anyway, so for tomorrow Maddi knows now to either eat sooner...OR recheck and delay/reduce her bolus if she decides to eat breakfast late. Now we just HOPE that I'm right for tomorrow :)

Todays Breakfast carbs were added by both girls, and I confirmed by text. BY TEXT. We dose a dangerous medication by text?! Yes, Summer means Diabetes is managed by text message, or a phone call when I’m away. It’s crazy when you actually think about that!

The comfort of having a school nurse to oversee Diabetes is now weeks gone. Maddison, Hannah and I have managed Diabetes pretty well over the past 8 weeks of summer. This summer of D management has been a team effort. Hannah oversees the happenings, and we all text back and forth as needed. Maddison has had very few lows, a couple random 300 highs, alot of in range numbers.....but mostly I see just too many out of range numbers in the low 200’s lately on the days Im away at work. But, whats a Mom to do when she is just a texting pancreas these days?

Its hard for me to say I can or should make insulin dose changes, when I’m not even sure if carbs are being counted right. Carbs will be missed by text. Carbs will be missed by phone call. Carbs will be missed when Maddi is learning the ropes, and highs and lows can easily be over treated. I don’t know if Maddi is zooming through the house with her pets, or lazing around on the couch all day. So, Chasing numbers begins. I feel trapped, unable to make any changes because I'm not sure whats really going on during her time on the D watch. I dont like it, but it just is. I have to let go of "perfecting" her numbers and realize she is more in control now, and I have to tell myself she WILL be okay, even if her A1c heads north because of it. Telling my heart that is another story.

Diabetes is becoming harder for me, because as a parent I have to let go. Id be happiest if I never had to let this sometimes overwhelming burden of a disease fall on Maddi’s shoulders. But that isn’t reality. She is counting carbs, adding and subtracting carbs, correcting, setting temp basals and treating lows on her own every day now, and she only has my help and confirmation by text. She will run higher than I'd like. She will have lows. She will grow proud of her independance, Struggle some days.....but in the end, she will always be ok.

Thursday, June 23, 2011

Flashback Friday

Ive been in an icky frame of mind lately, but the grey clouds are clearing. Slowly. Summer stress is unique, a whole new set of rules and craziness. A different schedule every day means Diabetes is whatever, whenever. Mostly doing alright, but not enough wrong in any pattern to change anything. I blame poor eating habits (making quick meals on the go) for any odd numbers lately. Oh, and its 110 degrees today people! If that doesn't take the kick out of a good reservoir of insulin I dont know what does!

Its flashback Friday! Today I'm reflecting back on the sweet days of summer spent by the pool, remembering what little fishies both my girls were from the tiny age of 3. Man I miss my little girls! Hannah always had the prettiest golden hair as a result of hours by the pool, and Maddison had the most beautiful skin tone, really! She should have competed for Little Ms. Hawaiian Tropics! Time to share some of my favorite Summer photos from years past (too bad most photos are in other broken down computers!)





Happy Friday! We will be at the 2011 Volleyball Festival ALL weekend! Go team BLAZE!

Monday, June 20, 2011

Damn Medical Expenses

Last week I took our Golden Retriever in to the Vet to see about a growth she has on her ear. (she is only 4yrs old!!) Apparently when it comes to ANYTHING medical in this house, the cost ends up exceeding $1000 in just one shot. Even for a pet. What the hell does this have to do with Diabetes? Well, just a few minutes after getting a big fat estimate of $800-$1200 for the Dogs surgery, I got a call from Medtronic. It was the straw that broke the Camels back.

I was pissed. PISSED OFF! TIRED OF MEDICAL EXPENSES RUNNING OUR LIFE!!!! Tears began to fill my eyes as the Medtronic Benefits Rep clued me in on "our cost" for TWO new insulin pumps. I really didn't need to hear it at that moment, I still had dollar signs floating around in my brain after hearing the Vet estimate of $1000 for surgery and a likely cancer diagnosis for my beloved Golden Roxxie. I should have told the Medtronic Rep that it was a bad time and I would have to call them back. But I didn't. So the result was a silent tearful meltdown right then and there.

I know exactly what our medical insurance covers. I know it left to right, front to back, even with all the tiny details that aren't disclosed in the coverage book. (Thanks to my day job) I know that our DME coverage is only 60%, yet somehow I imagined our expense for each pump would somehow miraculously come back at a reasonable amount. I guess denial really tricks you. Our pump warranties were up just a few weeks ago, and although both are working fine, it would be nice to just go ahead and order a new one. But, thats not gonna happen. Maddison's individual deductible is only met at 40% to date, so her new insulin pump would cost us only $1400. Mine however, would cost $1700 because I havent had any expenses applied to my deductible yet for this year. (which doesnt make sense and I need to investigate) $3100 for insulin pumps? Sure, let me just pick that off my money tree right? Damn never ending medical expenses!

Here is the part where I start to bitch...I'm still paying on my thyroid surgery from last year, AND deductibles for pump supplies from February! Not to mention monthly payments on a Vet bill from January when our silly poodle ended up with a stomach obstruction. And now, our Golden needs surgery. And she likely has cancer. And I STILL cant afford to even schedule my own over due Hysterectomy! -Gasp-

So, today I'm feeling bitter. Tired of it. Overwhelmed. Feeling hopeless and helpless, buried in endless medical expenses. This is just ridiculous. We pay up the a$$ for shitty insurance that doesn't cover even the typical percentages that most policies cover. It's sickening.

The bright side? Medtronic offers to set up a payment plan for both pumps. At less than $100 per month, (For 30 months!!!) it is totally affordable....but that's not the point. The point is, today I just want to say employer group coverage can kiss my a$$. Sure, we have coverage which is more than alot of families out there can say....but this coverage still sucks and it still breaks the bank and leaves us swimming in medical debt. Where can you find a REAL pet insurance policy anyway?

Sunday, June 19, 2011

My Dad

When I think of my Dad, so many things come to my mind. His infectious laugh, his beautiful smile, his Crystal clear blue eyes. His wild sense of humor. His love of classic cars. I admire my Dad most for how hard working he was. Even after working 12 hour days in a sweltering factory he would come home to yard work, car repairs, or some other task that kept him busy. Yes, my Dad was always busy fixing or improving something. My Dad could build a house from scrap wood, or fix just about anything you thought had lost all hope. Today I can see my Dads sweet smile engraved in my mind....

My Dad didn't smile too often, but when he did it lit up my life. Even when I was very young, I was well aware of the hard life my Dad lived as a child. Family income was a major issue for his family back then in the early 50's, and my Dad spoke often of the hard times without heat, food or running water. (Today I thank my Dad for sharing these stories, for they taught me empathy and understanding from a very young age) Yet the hardest part of my Dads childhood was the fact that his mother was a very unpredictable, hot tempered person who favored her eldest children, basically leaving my Dad to feel like an outcast in his own home. I often felt very sad for my Dad, knowing the abuse he was inflicted as a child at the hands of his own mother. I always knew my Dad was the way he was (quiet, hot tempered, non-social, strict, and hardened) because of the life he had lived. Sad, but true. When I think of my Dad even today my heart hurts for what he endured as a child, and I always wish he had the childhood everyone deserves....

And yet my Dad was still an amazing Father, despite it all. His love for his children was a blessing that I cherish to this day.

I remember when my Dad took just ME fishing one early summer morning. I must have only been about 4 at the time. I adored the time I had alone with him. I caught a HUGE trout and I was SO proud....but years later come to find out, that Trout wasn't SO big after all!

I remember when I was about 8 or so and my Dad took over the household duties because my Mom had surgery. I thought it was SO weird to go grocery shopping with a Dad!

I remember when I won a 12 speed bike and it was WAY too big for me, but my Dad encouraged me to ride it anyway. And then he bought us kids all new bikes!

I remember when my Dad surprised us with a new fish aquarium. I was ALWAYS begging for pets of any kind (sound like Maddison?)

I remember being excited for Sunday mornings because Dad would run out to buy a Newspaper and take me with him to get a treat.

I remember being his yard work buddy.

My Dad liked to pretend he hated Christmas.....but we all know he loved it! He was a whole new person every Christmas morning!

I used to love helping my Dad tend to his garden, and still to this day I think of him every time I eat cherry tomatoes, cantaloupe and cucumbers. His were the BEST!

There are so many good memories, so many things my Dad taught me. I think its easier said in poetry....

Dad

You may have thought I didn't see,
Or that I hadn't heard,
Life lessons that you taught to me,
But I got every word.
Perhaps you thought I missed it all,
And that we'd grow apart,
But Dad, I picked up everything,
It's written on my heart.
Without you, Dad, I wouldn't be
The person I am today;
You built a strong foundation
No one can take away.
I've grown up with your values,
And I'm very glad I did;
So here's to you,
from forever grateful, ME.

Today I wish I could remember my Dad on Fathers Day without thinking about Diabetes, but I can't.

As a child I remember my Dad waking up often at night from low blood sugars. I had no idea what that was all about, but I remember sometimes things got scary. I remember my Dad lecturing me often about my eating habits (especially as a teen) and I had no idea why. I remember him stressing the importance of Meat, "starch" and vegetables at every meal, and I remember him always having it portioned just right. I remember how we never took vacations or went out to eat because my Dad was on a strict eating schedule. Timing was everything. I remember being annoyed by that. And today I feel guilty for feeling that way! If I only knew! I remember the first time we did go out for dinner, and Dad ended up popping glucose tablets and cussing the whole time while we waited for our table. I didnt understand why. I didnt understand what the big deal was. I wish I knew back then, and I wish I understood. I wish my Dad wasn't alone through it all.

I remember when I was about 9 and my Dad allowed me to have a glucose tablet. He told me he hoped I never needed them. Ironic ey?

I remember every time I heard my Mom say that my Dad was vomiting, we learned quickly that meant a hospital stay. I remember fearing every time my Dad went into the hospital, thinking he wouldn't be coming home. I remember how empty the house felt while Dad was away....

As an adult working in health care I learned more about Diabetes. I thought I knew what it was all about. I thought I understood.

And then I was diagnosed. And it all made sense. My heart hurt even more for the life he had been living. And then, Maddison was diagnosed. And my world was broken.

The last 10 years of my Dads life was incredibly depressing. He suffered every complication Diabetes is known to inflict. It isnt anything that can just be forgotten, even on Fathers Day when Im supposed to be remembering the good times and the man I love as my Father. Diabetes invades my thoughts when I think of him. He suffered. Alot. For years.

When I think of my Dad, I think of Diabetes. I wish it weren't so. I wish my Dad could have lived well with his disease as Maddison and I do every single day.....but it just wasn't the same back then. Technology, education and newer insulins and insulin pumps are a blessing. A blessing that I know my Dad can look down on and appreciate for us. My Dad once told me "I hope that pump isnt the cure they keep talking about" to which I replied, "it helps alot, but it isn't a cure at all!"

And then, we both just smiled. That was a moment I will never forget, it was the moment my Dad finally felt someone understood the life he had been living. To be able to share the feeling of unity with him before he died, is priceless.



Happy Fathers Day to my Dad, I carry you with me always.

Tuesday, June 14, 2011

Just Swimming

Swimming is by far the most difficult activity for me to manage when it comes to Maddison’s blood sugars. Here we are in the month of June. Things are about to get crazy. I’m sure I complain about this every Summer, but it still ain't getting easier and I’m still complaining!! I think a big part of the swim season difficulty is likely the fact that our insulin pump isn’t water proof, therefore you have to disconnect and remove it for swimming. If Maddison will be swimming for many hours, she will have to reattach the pump every hour or so, to dose some of the missed basal insulin that was automatically given .....but how much? All of it? Or what percentage? It just never seems to work out right.

Is Maddi splashing around on the steps? Is she swimming crazy laps in a challenging race? Is she lazing on a raft or is she jumping in and out of the pool playing a game of “Fish out of water?” This Summer is going to be a major challenge, because if I am not pool side with Maddi, there is no way I can judge what her needs are. The hard truth is, Maddison isn’t little anymore, which means she just goes off on her own to swim at friends houses now. Its stressful. Its scary, and can be down right dangerous if we dont stay on top of Diabetes! I hate having to give “the talk” to other parents every time my kid comes over to swim. But, I have to. With Diabetes, you just have to. We pack at least 4 juice boxes, glucose tabs, candy, glucose gel, a protein bar, and Glucagon. You know what I say to that? Screw you Diabetes!!! Can’t my kid just swim like all the other kids!!??

Diabetes was hard enough to manage when I was always with Maddison at the pool....but now? Im just not sure where to start!

We certainly want to avoid “TURBOCHARGED” insulin while swimming, but entering the pool with zero active insulin isn’t always going to happen. So, we give a snack. A HUGE snack, at least 30c with some good protein power. (no bolus of course) Sometimes it works to keep the lows away, and sometimes it doesn’t. Lows strike within the hour. Sometime it’s the worst ones, the straight arrow down ones. The result is usually an upset tummy from having to ingest a bazillion sugary carbs to fight off danger! Or, maybe Maddison will end up WAY TO HIGH, then you are left trying to decide how much to correct that crazy high!

How am I supposed to keep Maddison safe while she is swimming away from home if I am not there to judge her activity level? What if she drops so fast, she needs help and the parent on watch doesn’t notice? What if she is confused and unable to treat her low herself? Will the parents understand the emergency at hand? Ohhh the “what if’s” of Diabetes!

So, last night Maddison was on her own managing D for the first time this season while swimming at a friends house. BS= 268 with .4 active. (I reduced dinner insulin by 15c) I had Maddi set her cell phone alarm for an hour after swimming started so she could check her sugar and call me. She was 198. Just where I hoped she would be, but I still hate the fact we have to run our kids high to keep them safe from lows when they are active!!

So now what? Re-attach the pump and give the basal insulin she missed in that hour? Its only a matter of time until her sugar “could” start to rise, but who the hell knows what will happen today? Today isnt the same as yesterday and wont be the same as tomorrow! Lets think....initially when exercise starts, your muscles suck up any excess glucose in the blood for fuel, which means if you have insulin still working in the body your blood sugar will go too low, because there isn’t any sugar left that needs all that insulin to enter the cells right? (Something like that) But, at the same time the Liver will start to put out extra glucose to keep the body fueled, and if there isn’t enough insulin in the body that means her cells are starved of the energy they need! Blood sugar rises. It is such a tricky balance! Im just a MOM, not an scientist!! I keep thinking, without enough insulin going through her body, her sugar will start to creep up, (and DKA can set in!) but yet at the same time if there is too much insulin she will go to low.....

Damn! What do you do? After much contemplating in my mind, I made the decision to have her do nothing with the 198 since she had a tad insulin still working from dinner, and I’m still kinda (a lot) worried that Maddison may give the wrong tiny dose if I have her give the missed basal without my watchful eye. My decision to not dose back the basal insulin missed in that hour slapped us in the face an hour later. 298. UGH.

And, of course it isnt enough just to make it through the time of swimming itself. No,no,that would be too easy. After the swim we may need to reduce basal rates (again, an educated guess of how much) give snacks, change pump sites (because water logged sites fall off or sometimes fail to work properly) and wake up to check numbers multiple times overnight to make sure our child is safe from delayed lows while sleeping. Just swimming? Not really. The is no such thing as "just swimming" with Diabetes. It is a hard fact that lows and highs trying to get swimming right is gonna happen. And they can be scary. And dangerous. And make you want to cry. Or scream. Or give up. But we can never give up. Diabetes can never win.

How do we make it through another season of swimming while keeping our kids healthy and safe? Even harder yet, how do I manage this by phone, miles away!?

Sunday, June 12, 2011

Home

I got a little emotional yesterday as I saw Maddison step off the bus arriving from camp. I didn't expect it at all, It was a sudden rush of happiness and relief all at the same time. I had the same lump in my throat when she left for camp, only this time I cried a happy little tear or two! My heart finally felt whole again. I felt a sense of contentment and peacefulness just knowing she was home with me. Its a great feeling!

Maddison has always been a chatterbox when she is with Me or her Dad. She tends to quiet up around others sometimes.....but MAN OH MAN!!! She didn't stop talking for HOURS after picking her up yesterday, and she was nothing but a PermaSmiling, energetic, bouncy girl who giggled about all the fun she had! She joyfully told stories of camp with so much enthusiasm that you couldn't help but smile and be excited too! I knew Maddi would have a blast, but I never expected her to be able to squeeze 7days of camp fun into just a few hours of stories when she got home! It has just been too cute! Looks like Camp AZDA will be a part of every summer in the future! Maybe next year I wont be such a mess the first few days :)

As far as the Diabetes part goes, I'm quite disappointed to see Maddison only ate about 8-40carbs per meal, which means her picky eating continued at camp. They didn't accommodate her pickiness as WE (sadly) do, so she just didn't eat meals. She did however, have most snacks that were given between meals (no bolus) Part of my excitement for camp was that Maddison would eat like all the other kids, but apparently not. Most mornings all she ate was eggs and bacon, and only had a bolus for 10 carbs of toast!! Needless to say, when Maddi arrived home we fed her about 150c of French Toast, apples, bacon, eggs, SF chocolate milk and ice cream for dessert. That was her evening meal of choice. I guess the food at camp was "gross." -Sigh-

Surprisingly, Maddison's highest number at camp was 289 one night before bed, to which she got a FULL correction and wasn't checked again until breakfast the next morning!!! She was 65 that morning, which was also her lowest number logged the entire 7 days. (Thank you snacks, and YAY for the reductions I made before she left!) Do you know how many times a day Maddison checked her sugar while away at camp? 4. FOUR TIMES A DAY!!!! Breakfast, Lunch, Dinner and before bed. That was it!! I think the minimal testing is awesome in some ways, though I dont see how that is really do-able in every day life, I mean, I'd LOVE to just check sugars 4 times a day, but we all know how crazy things get when you fall back into real life. I do wonder if our A1c would increase much if we tried to take the minimal checking route? Isnt that what our Endo's always say we should do? Minimize? But 4 times a day? I often worry that "micromanaging" is just too much sometimes and leads to burnout....but I know for a fact I'd still be checking overnight, at least once! Maybe we will try to check sugars less.....once numbers settle down in the next week or so.

I'm a bit irritated that no one checked these kids at Midnight like I was told they do. And, not rechecking that correction Maddi had before bed really pisses me off. #1 a full correction after a 14hr day of hiking, swimming and running around needed to be rechecked at some point during the night. PERIOD if you ask me. And #2 they dont know if my programmed pump settings are even close to being right! They shouldn't have assumed anything. If it were me I would have reduced the bedtime correction and checked again in 2.5 hours......but this is camp. I guess they think kids will wake up when they go low, or Mr Liver will always help them out when sugar levels get dangerously low. I personally think that is a dangerous line to walk. But, It is what it is, and somehow Maddison didnt have any dangerous blood sugars, even going from 9pm to 7am without being checked!

o, Maddi is HOME and we are complete again. According to her she didnt learn anything at camp, no carb counting, no "healthy eating" education, nothing. Hmmmmmm.....all I know is she had fun, made friends, felt a sense of "normalcy" being around so many other kids with Diabetes, and thats all that really matters. :)