What Maddison has to say

Today I'm stealing an idea from HEIDI at D-Tales for a kids MeMe. Im pretty much out of the D blog tagging game but still thought Maddison's perspective was interesting enough! Here is what Maddison has to say.....


What is your name?

"Maddison"


How old are you?

"10"


When were you diagnosed with Diabetes?

"When I was 6."


Do you remember what happened when you were diagnosed or how you felt?

"I thought Diabetes would go away, but when I found out it wouldnt I thought it was a deadly Disease. My Dad and Me were driving to the Hospital and I cried the whole way there. "


Do finger pokes or shots [or site insertions/infusion site changes] hurt?

"They dont hurt that much when you get used to it."

What is a high number?

"200"


What is a low number?

"70 or lower"


What does low blood sugar feel like?

"It feels like you are floating on a cloud, and shaky."


What’s your favorite way to treat a low?

"Skittles!"


How do you feel when your blood sugar level is high?

"Sometimes I feel tired."


What’s the best thing about having diabetes?

(giggles) "The Best thing? Umm....I dont know."


What’s the worst thing about having diabetes?

"When your stomache hurts and you havent eaten, but you can't or shouldn't because you are high."


Do you worry much about Diabetes?

"Ummmm,no.... not really."


If one of your friends were diagnosed with Diabetes, what would you say to that friend?

"Oh, thats ok! We can get through it together!"


What’s your favorite food?

"Ice Cream or Fettuchinni."


What’s your favorite snack?

"Cereal after school. I like Bran Flakes."


What’s your favorite low-carb food?

"Bacon"


Do you know what a blog is?

"Yes"


Do you know that I blog about diabetes?

"Yes"


Do you care?

"No. not really"


Why do you think I blog about diabetes?

"To let people know that we are all kinda the same."


What’s your biggest wish?

"To stop school!"


Who’s your best friend?

"Kendall"

What do you like about him/her/them?

"Kendall is always very helpful with my Diabetes and with just anything!"


What’s your favorite thing to do?

"Train Roxxie and Callie" (Our doggies)


Do you have a hero?

"My Nurse from the Hospital, and Dr D." (our Endo!)


What do you want to be when you grow up?

"I always wanted to be a Vet, but now we have a Poodle. A dog groomer, or anything to do with pets."


Who’s your favorite person in the whole wide world?

"My Mom and Dad"


Are you afraid of anything?

"Not really"


Fill in the blank. Maddison is........ -----PERFECT-------.
(There is no right or wrong answer.)


And THAT is what Maddison has to say!

140

Today at work I got a phone call from a Patient that wanted to discuss his Insurance bill. Usually this means two things...

1) They have NO IDEA how insurance works
2) They just want to find a way out of paying their balance

This guy just wanted to BITCH about the "high mark up" of health care AND he has no clue how insurance works. Not a good combination. The conversation started out edgy, only to turn down right vicious within minutes as I tried to explain how he has a "co-insurance" for his services rendered from our Doctor. He didn't want to hear it. All he did was SCREAM at me, telling me how wrong it is that "we" charge so much for our services. All I could say was how WRONG it was that insurance companies determine what is REASONABLE AND CUSTOMARY and STILL adjust a HUGE portion of billed service according to the "contracted rate." He just didn't get it. He thinks the provider of service is the bad guy (our doctors) when in reality, its the Insurance companies that are EVIL. 37 minutes I had to spend on the phone with this guy, breaking down every charge, every insurance payment made, every adjustment WE took, every balance he owed to our practice and why. His total amount due? $140.

A quick look into his account was something like this....

We charged $150.
Insurance paid $37.62 per our contracted rate with them.
Which meant WE WRITE OFF $107.27 of our charge!
Which means the patient is left to pay his co-insurance of $5.11

This guy hasn't paid these small co-insurance portions for MONTHS on multiple dates of service which leaves him with a $140. I, being the TOTALLY UNDERSTANDING PERSON I AM BECAUSE MY OWN INSURANCE SUCKS, have not turned him over to collections like I *should* have months ago because....Well, because I think its wrong to turn someone over for medical debt unless they OBVIOUSLY refuse to pay.

So anyway....I understand his frustration, really, I do. But people need to stop blaming the Medical providers and turn their fight against insurance companies. As he bitched and complained about paying "this" for "that" my blood boiled. My CGM alarm was ticking me off, alarming LOW BS over and over. I was 72. I must have silenced the alarm 10 times in that very long 37 minute bitch fest of torture from this guy.... Which reminded me....would he REALLY like to know what sucks?

How about the fact that some people don't have insurance? How about the fact that some people haven't been able to get AFFORDABLE insurance because of Pre-existing conditions? How about the fact that COBRA coverage is RIDICULOUS and has put our family along with thousands of others in serious debt because the premium is comparable to a mortgage payment? I was wasting my breath on this guy. I could explain all day, and he just wouldn't understand. Half listening to this crazy man I just wanted to SCREAM. I mean, really. When I think about our own families financial issues because of health insurance....because of Diabetes......I just about flip out. I imagined myself shouting back at him....

"""Do you know what I pay for our life saving Insulin because our Rx coverage sucks!!?? $160 bucks TIMES TWO per MONTH mister jackass~!!PER MONTH! Do you know why? Because our INSURANCE PLAN doesn't cover name brand medications!! We used to pay $10 a month....but lose a job, get shitty insurance, and now we pay $160 for insulin!!?? You want to bitch about your $5.11 here and there from over the last 6 months that you haven't paid!!?? REALLY?

Would you like to know that your insurance coverage shows SUPERIOR to mine? Superior to SO many people? 20 finger pokes a day in my house MISTER JACKASS...thats $20 a day for test strips without insurance!! Can you do the math? That's $600 a month to draw blood from our fingers!! And pump supplies? Do you want me to tell you about THAT Mr Jackass? In our house we pay 40% of our insulin pump supplies. TIMES TWO. That's about total to a monthly car payment if ya didnt know. If my insulin pump breaks...UM...YEAH That's 8 GRAND PLEASE!! And lab work? ummmmm.....Lets see....our new SHITTY insurance plan gives me a coinsurance for THAT too! I have never head to pay coinsurance for lab work, but guess what!!?? We do now! (I couldn't even discuss IP services) God forbid if one of us in this house ends up in the hospital"""...... OHHHHHHHH the things I wanted to tell this guy.

$140. Seriously? I bit my tongue for 37 minutes. As ticked off as I was at him AND Diabetes at the moment, I did very well.... I killed him with kindness and spared him the WRATH OF WHAT I REALLY WANTED TO SAY!

I didnt treat that 72 blood sugar as my CGM alarmed. Post 37 minute phone call with MR JACKASS and my CGM read 162. FABULOUS.

Hassayampa and SKITTLES!

Today Maddison and I made another trip out to the Hassayampa River Preserve to go bird banding. Hundreds of miles of nature untouched. Today we learned that most of the Hassayampas 100-mile course has rivers that flow only underground. How cool is that? Luckily, within the preserve crystal clear waters emerge, flowing above ground throughout the year. Not so much this time of year, but still BEAUTIFUL! Especially when tempertaures hit 104 today!



Hiking, excitement and HEAT = SKITTLES. Besides knocking carbs off Breakfast, Lunch and snacks today, Maddison and I had to consume a crazy amount of Skittles to fight off lows. Temp basals could have helped....but Skittles are so much more yummy! Of course, lets not forget how Insulin Pump technology SAVES us on days like these. A quick check to see how much insulin is active, and we know exactly what to do. Im TOTALLY appreciating IOB today!

6 hours of hiking left Madddison and I both feeling CURED. Not one blood sugar over 140 and none under 89, for either one of us. I'd call that DEFEAT :)

Two things

Two things that have just totally made my day.....

Good enough

Do you ever have the feeling that "good" is never good enough when it comes to managing Diabetes? Every person/parent with Diabetes has a different idea of what numbers are "good" and what numbers are "too high." Every person with Diabetes has a "range" that works for them. Some people are safer in the 120 range than they are in the 90 range. That's just how THEIR OWN body is....or rather, that's just how their insulin dosing HAS TO BE to avoid lows.

For the record, I never refer to blood sugars as "good" or "bad" but rather "too low" or "too high". Funny how calling our sugars BAD vs TOO HIGH can make all the difference in how we feel about this disease! Again, I know that numbers that are good for me, arent safe for Maddison, just as what is decent for Maddison is way too high for me. I can't do a 180 like Maddison can. 180 for me is pure torture wheras 180 to Maddison "isnt so bad." You follow me?

My pump is set for a 90-90 target all hours of the day. For awhile I was running more like 130. I'm pretty sure I can get back to that 90 range. Ive had time now to analyze my numbers for a few days since I slapped the CGM on a few days ago. The CGM allows me to see that my ratio is darn near perfect, assuming of course, that I count carbs with total accuracy. (I need to get back to pre-bolusing though!!) My basals are set just right during the day....nigh time needs some work....BUT, you cant manipulate basals when you are correcting an out of range number before bed every night now can you!!?? Sheesh.

So, Im working on testing my correction factor. One day I corrected and was too low. One day I corrected and didnt budge. Sometimes I think us people with Diabetes need to understand that we are SERIOUSLY MISSING AN ORGAN IN OUR BODIES AND NEED TO JUST BE HAPPY WITH A 130!! Is that wrong of me? Should I always strive for tighter control?

Well, I've been trying for the last week. I really want that 90 range. So, I go low even after changing the correction by a point or two. Maybe its because I can't bolus a .025 with my pump? Could be. Different times of day, different foods, different activities. Maybe I should just be happy with the 130 instead of obsessing over micromanaging? You know why? Because I end up irritated and angry. Upset with MYSELF for not being able to figure it out. That's sad, but true.

Im thinking sometimes "good" numbers cant be perfected. Not with Diabetes for sure. Ive managed to get my numbers back to the 105 range the last couple of days and Im still not happy. I really want that 90. But at what cost? My sanity? Risking lows? Risking tighter control that makes you not feel your lows until you are dangerously low? I think right now I'm gonna stick to the 105 range. Good enough. I say that....but wish I felt it.

TWENTY THREE

23 looks different than the spelled word TWENTY THREE doesn't it? In fact, 23 looks like a freaking HEART ATTACK on that little pink meter dont ya think?

The morning started very typical today. Maddison was around 80 at 4am so I had her sip some juice. We have done this sipping game a million times, bumping her up just a tad to a safer range until she was to wake up for the day.

Things got a little complicated for me this morning with spilled coffee, a barking puppy and a meowing kitten chasing after the barking puppy. So, I didnt check Maddison when I woke up at 530 as I normally would. Seeing that 23 pop up on the meter an hour later stopped my heart, I mean, I really think my heart stopped beating for just a moment. I instantly cursed myself out load because HAD I ONLY checked her an hour before! ONE TIME you cannot let this freaking disease go without constant attention!!

With lightening speed I threw open the bedside table, asking Maddison if she felt ok. "Yes mom, why? What am I?" she said. Her voice was music to my ears. There are no words to explain what you are thinking and feeling at this moment while you are pleading with God to PLEASE just let her be able to drink the juice!! I was confused. I grabbed the glucose tabs wondering how Maddison was able to talk with a 23 blood sugar. I yelled for Hannah to get the sugar gel while I fumbled for the glucagon, meter, and test strip. I just kept talking to Maddison. I dont even know what I was saying. Recheck showed a 154. Excuse my language....but SCREW YOU STUPID METER!! False alarm. Another recheck showed 158.

Then, I could breathe. I can see how the false highs happen when checking your sugar. But false lows....like a TWENTY FREAKING THREE!!?? 23. TWENTY THREE. 23!!??? Stupid freaking meter. You can bet I climbed in bed and held Maddison tightly. She giggled at me. Im glad she thought it was funny.

Jump Street. Damn it.

Wall to wall trampolines, even half way up the walls. Bounce houses. Obstacle courses. LOUD music. Did I say LOUD music? An awesome new place for kids, quite different from the typical "bounce house" party land for younger kids. This place is focused on older kids and teens. No princess jumpies here. For some reason 20,000sq feet of endless trampoline just doesn't seem like a good idea in my mind, Diabetes or not. href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRT-sXalJexeRkt3s7RZV_xe00vhOZOF33ld4D9V4I2t-WvR5Ab1qevf6BQXyPvKzh2D58bcoV7XrhHDRVjoQGyaAO-tB6Df_jF7J50UwAXTO_9wLzp7pgSafCG3ICVXEqbmhtwIf9uU8i/s1600/JUMP.jpg">See that boy flipping around? Now add 49 other children of all ages jumping and zooming around at lightening speed. Many flipping around just the same. Can you say call 9-1-1?

In August my co-workers teenage son broke his ankle bone LITERALLY in half at this place when he landed wrong and someone else fell on him. Surgery was needed. A few weeks later another co-workers daughter sprained her ankle so badly that the ER doctor said it would have been easier if she broke it. At least then they could fix it. Apparently, this place is keeping the ER's busy around here. I have heard it time and time again from neighbors, friends, teachers, even some random chick at the grocery store. This place is bad news. Head injuries. Broken arms. Broken legs. I even heard my Hannah say someone at her school broke their neck. Seriously. The problem with this place is that there are so many children jumping at once and you cannot predict other's behavior. They allow 50 jumpers to jump for one hour. FIFTY.

First, let me say, I thought we were safe from this place. Its about 20 minutes from our house. SURELY no one in our part of town would plan a birthday party there right? Ive heard the stories all summer from Hannah and her friends. Ive heard how cool this place is for teens. After all, you can flip around like a gymnast and listen to outrageously loud music with minimal supervision on these trampolines. Bounce off the walls. Literally. Back flips and sky high somersaults on trampolines? With 50 other teens and kids running all around you? Sending Hannah without Diabetes was concerning enough. Sending Maddison? My child with Diabetes? Well, SHIT. That's a whole bunch of concerns all jumbled into one HEART ATTACK for this Momma Pancreas! Thank goodness we dont live nearby!

Damn that birthday invitation. We were doing so well with birthday parties. Maddison has FINALLY gotten to the point that we dont have to follow her around for parties anymore. You know. We are just like you....we are the parents lingering around the birthday party, hiding in the background trying not to be seen while we anxiously calculate cake, candy, ice cream, snocones, chips, pizza, and other birthday carbohydrate craziness for our child with Diabetes. I should say, that was us. Up until the last year or so. We did our time as the parents of a little one with Diabetes. I cant begin to count the birthday parties that broke my heart, because I was the only parent that had to stay. :(

Maddison has taken on the world of parties herself for awhile now. Thank goodness for cell phones. Now THIS birthday invitation. Damn it. I thought swim parties were bad. THIS? This is the worst. Sorry Maddie, this momma has no choice but to join you for this one.

Jumping and swimming have always been on my SHIT list when it comes to Diabetes. You never know what to expect. This kind of birthday party calls for some serious planning and mind power. My purse was packed. Juice. Skittles. Gatorade. Granola protein bars. GLUCAGON. I had a plan. Reduce basal two hours prior. Subtract 10c from lunch. Time to jump. Maddie's 160 with .1 active. PERFECT. But not for jumping. 15c should do it. YES. Stick to just 15c for now and check in 20 minutes.

I screwed it up, YET AGAIN!! Damn the fear of lows! Fear of lows always makes me over do it! There is nothing like the feeling you get watching your kid try to fight a low blood sugar because they just want to keep jumping or swimming like the rest of the kids. There is also nothing like seeing the life being sucked out of your kids just because a little trampoline fun. Man, that pisses me off. And, scares the heck out of me! So, I always seem to over do the carb load. Better to fix the high later than to chase the low I guess.

I panicked in the last minutes before I sent Maddison off to jump. FEAR OF LOWS took over as I watched the other kids and teens jumping all around, 6ft in the air. Dripping with sweat. I wasn't so concerned with broken bones at this point. I just wanted to keep my kid alive and seizure free! In that last moment of panic I ended up giving Maddison another 15c of Gatorade before I let her jump. Thats 30c unbolused people!! What was I thinking!!?? If she had more insulin active then yes, that would have been the right decision to make. Just .1 active! Freak out Momma mode made me over do it, even when I KNEW .1 active was OK!!! .1 wasnt gonna be enough to push those 30c anywhere!!?? UGH. Stupid me. Stupid fear of lows.

15 minutes later Maddison is back panting and sweaty, holding out her finger for me to poke as countless people watched. I hate that. I knew I screwed up. A quick check showed a 228. Realizing Im a moron, I bolused a tiny .2 knowing exactly what was going to happen next. Mr Liver will decide Maddie needs some glucose with all this exercise ya know! 15 minutes later, 338. The .2 will be plenty. Amazing, but true. Thats how it works for Maddison. Give her a 400 with a .2 and an hour of jumping and she will end up just FINE.

Years past Ive learned the hard way that active insulin and Trampolines are seriously freaking DANGEROUS. Ive pumped Maddison up to a 400 PURPOSELY because she has gone swimming or jumping with active insulin from her last meal. The last bounce house party we went to Maddison dropped from a 400+ to 60 in just 30 minutes because it was just an hour after lunch. Never mind the 20c I gave her unbolused. Didnt matter. Active insulin + exercise for Maddison = WATCH THE HECK OUT! Man, was I happy the day our own trampoline popped its last spring!

After the dreadful hour of jumping was done we headed back to the birthday girls house for...what else!!?? Pizza, cake and ice cream!!! I dropped Maddison off with a 300 blood sugar and went on my merry way home a few streets down knowing she will do just fine. 15 minutes later she text me a picture of the pizza she was going to eat. I had her bolus just 20c. 15 minutes later she text me a picture of the cake and ice cream. I had her bolus just 30c although it looked like 50c. An hour later its time to pick her up and come home. I ask her to check as soon as we walk in the door. 120 with 2 UNITS ACTIVE!!! Damn it. Hmmmmmm......this could go either way. Using my amazing knowledge of past jump experience, I gave Maddison 30c of quick carbs and high protein. 3 hours later, its time for bed. 108. Zero active. Can you say SUCK IT DIABETES!!??

Temp basal reduction of 30% is set for the next 8 hours. Maddison's been hanging around 80-120 at night. Another 20c with some PB and she's sitting pretty at 160. Just where I want her to be tonight. Next check, 2am.

------------------------------------------------------------------------------------

Well, 2am kicked me in the ass. 410. -Sigh- Correct in full? I said NO WAY after all that jumping, husband said yes. So he did. Next check, 230. I guess Diabetes told me, seems Diabetes always has to remind me of who is really in charge. Damn it! (I say that with a sense of "humor") :)

The SLUMP

I'm S-L-O-W-L-Y making it over this terrible, no good, constantly tired, lazy, CRAZY, emotional SLUMP Ive been TRAPPED in since MAY. YEP. That long. This has been the worst one by far my friends.

Summer is crazy. No routine isn't so good for Me or Maddison. My Thyroid went wacky at just the same time, causing me to be a physical mess. TIRED. Nothing but tired without any motivation or energy. I lost 12 lbs, and hit my LOWEST weight EVER since I was 15 years old!! (112 lbs people!!) Not good!! My numbers ran lowish all day, and too high most nights. Nothing made sense with my numbers (Hyperthyroid) so I didnt change anything. My A1c hit the highest ever, 7.0 and I was in total burnout mode with Diabetes. For both Maddison and me. It has REALLY sucked.

Oh well. THE SLUMP is coming to an end and all I can do now is move forward.

Im 4 weeks post my Thyroid Lobectomy and I actually feel alive again. No more Zombie mode. My labs were drawn last week and everything came back just fine with the new Thyroid medication and removal of the problem nodule. My energy and motivation is getting better. Too slow for my liking, but better. Every day I'm still fighting to stay awake at my desk job and fighting the urge to collapse into bed when I come home. Its weird and I hate it. This isnt ME!

Maddison and I started volunteering at a kitten rescue about 2 months ago, so that has helped to get me up and out of the house everyday...even when I didnt feel like it and just wanted to hide. I tell ya, having to keep Maddison busy and happy is the only thing that has kept me half way normal these past few months!

My emotional state isn't Diabetes related for once! I have alot going on, besides my thyroid issues. Mid-life crisis I believe! I'm S-L-O-W-L-Y accepting the fact that my Hannah is in High school. -Sigh- I haven't quite excepted that boys REALLY like girls who are on the Volleyball team. Im still shocked at every game to hear the boys around us talking about the girls on the court. THAT'S MY "HOT" DAUGHTER MISTER BOY FROM THE FOOTBALL TEAM!!! Ugh. Stress these days comes from my teenager, NOT Diabetes. Im not sure if thats a better thing or not!! And Maddison? Ohhhhhhh I remember how things changed when Hannah turned 10. The moment Maddison blew out those 10 candles in August our relationship got very complicated.

Maddison....OH-MY-SWEET-MADDISON. Oh how you make my life so much more complicated than it has to be. SCHOOL. The school HATRED is back. Every year I say this school year will be better. Every year it starts out well, then by September the shit hits the fan. Well, this year the shit hit the fan just 5 days after school started. I dont like the age of 10! Suddenly my sweet Maddison who is always so cooperative and sun-shiny has turned into a gremlin. She doesnt even think I know everything anymore! ACK! Where did my baby go? Talk about difficult!

Every day with Maddison and school is a battle. Every day she complains. Every day she says "IM NOT GOING TO SCHOOL!" and sometimes she hides. Long story short....on top of Maddison's "normal" hatred of school she is totally overwhelmed academically in 4th grade. We didnt start the year with her IEP in standing since I was NIEVE enough to think this year would be different. So, I met with the Principal and we immediately got Maddison back to following the IEP guidelines, which meant Maddison would receive Resource help with Math and Spelling. (Maddison has a high/average IQ and no one can seem to pinpoint a learning disorder!!!) By now the teacher thinks Maddison is just a spoiled brat that refuses to do her work because she walks all over us. Im sure she thinks we treat her differently because the Diabetes....thats a whole 'nother story!!

UM NO.....

Maddison is a child that has been left BEHIND every single year because we have to babysit the freaking teachers to make sure HER needs are being met. To make sure they follow her IEP. To make sure she is actually getting the help they say she is. Its exhausting. Its draining. Somehow we make it through each school year, just BARELY. This MaMa Bear is about to be heard. Hear me ROAR. Mark those words. Maddison is set to be re-evaluated in all areas...THIS will be the year they FINALLY see she WILL fall behind if nothing changes. HEAR-ME-ROAR.

Back to the SLUMP issue...tonight Im slapping on the CGM. This SLUMP needs a big kick in the ass. My numbers need some work. I feel low at 80. Thats bad. Most of my BS checks reveal a number around 130-200. Not so bad you say? For me it is. I CAN do better with just a little bit of effort. I havent even been trying. Since my dx 5years ago Im LUCKY to be able to maintain an A1c 6.0-6.5. My last 7% is on its way out! So is this terrible, horrible, very bad SLUMP. Hear me ROAR. Ive been knocked down for far too long and its time to get back up....assuming my lymph node biopsy comes back fine!!! I'll blog about that later. Right now I'm ignoring it until my consult next week!!!

The Tummy

Who would know that different pump sites need different basal rates? Ahhh...I guess that would just be us. The parents of Diabetes. Sometimes it takes me awhile to realize why numbers have suddenly gone wrong.

After watching and analyzing Maddisons numbers for a few days, I realized she had a site change the day numbers went weird. From the hip site to the tummy site. Yep, Maddison gets a different basal rate for hips vs tummy. As in, WAY different rates. Luckily, right now I have her convinced we should just stick to the tummy for awhile. What we see is 70-170 instead of 160-280. WEIRD I tell ya. Absorbency and Diabetes. Who would know? Add that to the list of millions that make us D parents AMAZING in defeating this disease! :)