Saturday, August 28, 2010

My own bed

Words just cannot express how happy I am to have my surgery over with! Waiting with wonder and worry just kills me. My crazy mind always convinces me that whatever new cyst/mass is being removed is definitely malignant. I hate that. No amount of prayers or optimism shakes the cancer scare from my mind. Its terrible! Then by the time the surgery day approaches Im 100% sure everything is fine and I go in without a worry in the world. (except blood sugars) Its weird. I drive myself bonkers! LOL

I entered the hospital yesterday without worry. Calm, cool and with the mindset that I even had my blood sugar totally under control. No nerves, just the desire to get this done! I woke up with a sugar of 102 so I had to disconnect my pump for awhile. I flat lined at 120 from 5am until 9am when I started to go down. Disconnected the pump again, and set a temp basal for 80%. Flat lines on the CGM UNTIL we got to the hospital! :)

While waiting in the Pre-op waiting room my entire world was about to be shaken....I had no idea what was to come....what happened next, I REALLY didnt need at this point! I REALLY lost it for a few minutes. From out of nowhere emotions overwhelmed me as soon as I saw his face....

The Surgeon!! The Surgeon who performed my Dads Triple bypass walked within inches of me. INCHES. I instantly had chills and my heart skipped a beat. I felt my face go pale and I couldn't respond to the questions I was being asked. The surgeon that spitefully turned off my Dads sedation as we fought for Hospice!! Do you remember reading that blog post!!?? HIM!! It was him right beside me, consulting a family in waiting!! The instant he walked away the tears came. I sobbed. So many terrible and painful memories of those 25 days of hell in ICU with my Dad. I was heartbroken! What are the chances I see HIM? Of all the freaking Doctors and Surgeons in this huge city of Phoenix!!?? I see him? UGH. My poor hubby didnt know what to say as I sat crying my heart out. It was terrible!

Anyway, I ended up flat lining in the 120's again as I was being prepared for surgery. I settled in on a 50% basal rate. I entered surgery at 121 and came out 2 hours later at 148. PERFECT! The surgeon didnt even have to set a drain on my Thyroid so I got to come home instead of staying overnight for 24hr observation. Home in my own bed I couldnt be happier!

My neck muscles are mostly sore from being propped back in an awkward position for 2hours. Im pretty pain tolerant, and did well until about 3 this morning when I had to double up the pain meds. But, Im feeling great now and even got up this morning with the kids. Made breakfast. Had my coffee. Now I'm headed back to bed for a nap, and then Maddison wants to spend her birthday money....or......"puppy fund money" I should say. :)

Friday, August 27, 2010

Lets Do It

Today is the day. NOON! I'll be relieved to have this surgery over and done with! My surgeon decided the best option is a Lobectomy (removal) of my right Thyroid gland. If it were as simple as that I wouldn't worry so much. Add Diabetes to the mix and I'm a bit stressed! I've had 5 surgeries BEFORE Diabetes.....but with Diabetes is a different story!
I will be staying overnight for observation......oooohhhhh I hope I have a good nurse!

I've had the CGM hooked for a few days now. The accuracy has been amazing. I asked my Endo to write an order stating my insulin pump is to remain my method of D management. We shall see if we can stick to that plan! My hubby is the lucky one that will have to manage my dosing while I snooze after surgery.....anesthesia and me don't really get along so well. I tend to not wake up easily, spending the next 24hrs in and out of deep sleep uncontrollably! I hope the CGM can help me out!

Ill post soon to update, only good news of course! :)

Thursday, August 19, 2010

Today

Today started as a crazy day! Anyone on Facebook knows the story....

530am Take the dogs outside (Diego is suddenly blind in one eye) The cat sneaks outside, jumps the fence and hides in the bushes of the greenbelt. Then comes the Coyote. Coyotes in our neighborhood are often seen having cat for breakfast. We were lucky. The Coyote saw me and left, I eventually caught the cat, round up the dogs and go inside to finish my coffee. Sheesh. Enough excitement for one day!

As the morning rush goes on, Maddison shows me her "rash".....well look at that! We got ringworm (which isnt a worm, a parasite or anything other than a fungal infection!) from the sweet kitties at the cat rescue where Maddison started to volunteer a few weeks back!! AHHHHHHHHHH!!!! Ran to the store, started treatment. Easy enough, but EWWWWW!!! (Maddison was bummed she didnt get to miss school for the rash)

Stop by my Moms on the way to work....note to self....there is a black unknown vehicle parked next to my Moms house. Note to self, the shirtless man, covered in tattoos and slumped over the steering wheel with the door wide open does not appear to be alive. A few steps closer, he is breathing, never responded to anyone. Call 911.....Drug overdose. GREAT.

Driving to work I feel jittery, like I needed to jump out of the car and run a thousand miles. Heart palpitations. This isnt excitement from my wild morning. Nope, this is the new Thyroid medication I JUST took for the first time. GREAT. Hmmm......breathe. Maybe Im low. Check my blood sugar while stuck in traffic. 108. Perfect. But, now I want to puke. Why the heck did the instructions say to take on an empty stomach? Ewwww......I better pull over. PUKE. LOVELY. There went my breakfast. And.........here comes a low.

All this before 930am. -Sigh-

Every night I go to bed dreaming of tomorrow. I try to stay optimistic. I try to think positive, even when craziness comes my way. I really do. I always wear a smile. I'm always cheerful. But, there has just been too many little things lately. I'm tired. I dont feel well and its wearing me down!

A friend of mine at work was diagnosed with ovarian cancer over the weekend. (NOT a little thing) She is 33. With two young boys. I can't stop thinking of what she must be going through in her mind, and what she will go through as she faces this battle. Everywhere I look these days Im reminded. Constantly reminded of how "easy" my life is in comparison to some. Reminded of how precious each and every day is. Reminded that **I** need to look ahead and not back. Forgive. Forget. Move on. Live for today. LOVE those around you.

We knew today we needed to take Diego in....then we changed our minds. He was ok. He was good actually. Oh, no.....he isnt. But now he seems fine. We should wait and see how he feels tomorrow. One more day. Ummmmm.......NO. 15 minutes until the Vets office closes.....We just HAVE to, we do.

Josh, Maddison and I made the TOO QUICK drive to the Vets office. I just wanted to turn the car around and have him for one more day! A week ago he was his playful self. Chasing ball after ball, then diving in the pool. Today he can't see and was weakened by the Lymphoma. Literally overnight. Maddison understands. She always does.

We said our goodbyes to Diego there on the cold vets floor. Hug after hug, and not wanting to let go. Maddison and I left the room and Josh stayed with Diego. And then, Maddison and I cried quietly together while we waited to hear that Diego was in heaven. "He'll be swimming all day and surrounded by tennis balls in heaven" Maddison says. That, I have no doubt.

Maddison and I cried all the way home. Just Diego's collar and leash in hand, with memories in our hearts.

I took a blogging break over the summer. Too much going on. Too much chaos. Changes. Stress. I had no interest in anything Diabetes related. I was too overwhelmed. I took a Diabetes break per say, Diabetes took the backseat. I thought Id come back to blogging this time having good things to say. Maybe having something interesting to say about Diabetes life. Maybe some inspirational words for others out there that know what this life is like. I dont know what happened to those days. Lately, Im anything but inspirational. More like depressing. So, Im taking another blog break. If you dont have anything nice to say, then dont say it. Im sticking with that......

Wednesday, August 18, 2010

ACTH results

My ACTH results came back perfectly fine. :) I started on thyroid medication today, so I am hopeful I will start to feel like my own energetic self soon. I need to have a "Diabetic clearance" done before surgery, which will be a lobectomy of the right thyroid gland for biopsy. OUCH. I'll update soon.

Tuesday, August 17, 2010

Not So Good

I went into my surgical appointment today expecting a simple plan to schedule a Fine Needle Biopsy on my Thyroid...but what I got wasnt so simple.

Problem #1 is that my "complex peripheral echogenic cyst" is over 4cm in size. Thats huge by thyroid standards. I knew my neck and throat feel enlarged, but I didnt expect the size. My options are to have the needle biopsy (which the surgeon recommends) or go ahead and skip straight to removing the right side of my thyroid gland altogether to rid the chances of the needle biopsy coming back inconclusive or missing a cancer diagnosis. (which my Endo recommends) CANCER didnt really make sense until I read the top of my ultrasound report that says....

REASON FOR EXAM:
FATIGUE, HYPERCALCEMIA, DIABETES

Ummm.....whats that? HYPERCALCEMIA? Thats a new diagnosis Ive never been told I have.......

So, we are looking at several things here....Hyperthyroidism that is causing the high blood calcium (why are we not treating this yet if we KNOW I have it!!??)) or it could be Parathyroid Disease, Adrenal failure (Addisons Disease) or at worst, malignancy somewhere in my body. Yeah. Not so good. Still nothing back on my ACTH test (used to determine Adrenal problems) so Im getting a bit irritated just waiting around to hear what the heck we do next. Surgery? FINE, just get it done. I hate waiting. Just tell me what needs to be done and lets get it scheduled!

NOT SO GOOD and definetly NOT SO FUN was the Surgeon deciding to test my vocal chords while I was there. (because my hoarseness) ICK and OUCH. First he "numbed" my vocal chords by squirting something into my nose and letting the liquid drain into my throat. ICK. Then came the OUCH. "Oh-so-carefully" he fished a small tube into my nose and down my throat. (insert gag here) Vocal Chords? Apparently they are just fine. But OUCH! My throat feels all scraped up and irritated now!

"Not so good" can still turn out to be A-OK. Keep your fingers crossed and your prayers coming!

Monday, August 16, 2010

Surprised

Maddison had her 3 month Endo appointment today. I was surprised to hear her A1c was 6.9% since all summer I backed down from micromanaging. Summer was a long relief from chasing numbers, I seriously think summer is what maintains my sanity. School is back in session and numbers need ALOT of work. Day 1 Maddison was perfect. Day 2 she was low. Day 3 she was high, followed by day 4 of highs and day 5of lows. Gotta HATE Diabetes!

Last night I was up every hour correcting Maddison's crazy highs. Moderate ketones. Site change. Insulin change. Tummy aches. Large ketones. It was a Diabetes Hell night. The worry sets in. You start to feel panicky inside wondering if THIS is the time DKA will sneek in. Nothing I did would bring down those numbers, or rid the ketones. Not even an injection of some super fast acting Apidra. Somehow after 7am the ketones disappeared. Just like that. Tonight, Im just hoping for some sleep with numbers that behave!

Dr D mentioned she thinks Maddison needs to go Inpatient for a growth hormone evaluation, AFTER I get my own issues straightened out. -Sigh- Tomorrow I have my surgical consult. Im not looking forward to it! The we move on to Maddison's testing.....

Our furry Diego is losing his vision, a complication of the Lymphoma. He seems good otherwise, still wanting to chase his beloved tennis ball all day. The Vet gives him 1-4 weeks at most. :(

Thursday, August 12, 2010

The storm

When it rains, it pours. In fact, I was thinking the other day how this entire year has been like a monsoon for our family. Rain, rain, rain. We literally rang in the new year fighting for my Dads life in ICU. I really expected and hoped the rest of the year would turn around. So far its been nothing but frustrating and overwhelming in SO many different ways.

Today my Thyroid Ultrasound results came back. Not so good. I still have multi-nodules, but this time one particular mass is questionable, especially because I am now leaning towards Hyperthyroid. I see a Surgeon for consult on Tuesday. I'm actually not worried about the result of the biopsy itself since thyroid nodules are so common. Im more worried about the darn anesthesia! I never recover well from surgery, and I certainly dont look forward to adding a new (HIGHLY VISABLE) scar to my ever growing surgical collection!

Nothing back yet on my ACTH test, which is fine with me because I already think I know what the result is. I dont need anymore heart ache right now anyway. Dr D said it usually takes about a week to get those results, so, we wait.

Today Diego's Vet appointment was unfortunaetly exactly what I feared. I mentioned Lymphoma to the Vet and she said that is exactly what she would suspect. She tried to sound hopeful, but she ended up saying "Im so sorry" nearly 10 times before the exam was finished. She knows as well as I do. She just cant say it until the lab work comes back. I understand that.

It could be that Diego has Valley Fever or some infection, but its highly unlikely. Once Lymphoma has spread to every Lymph node (which the exam showed it has) it is considered stage 5 with a prognosis of 2 months at best. -Sigh- You just dont believe it when he is so seemingly fine! Denial anyone? When we were leaving the vets office she brought me information on K9 Lymphoma. Enough said. Tomorrow they will call with his blood work results. And then, we will have to make a the toughest decision.......
From Chasing Numbers
Hannah and Diego in 2006

The good news of the day? HANNAH MADE THE JV VOLLEYBALL TEAM AT SCHOOL!!!!! WOOOHOOOO!!!!! Always a silver lining when all you see is darkness :)

Wednesday, August 11, 2010

Testing, School... and my furry "D"

I finally got my ACTH test over with today! It was a piece of cake! My biggest worry of course was fasting since I recently started Apidra and have had numbers all over the place. Well, yesterday I said GOOD RIDDANCE to the Apidra and went back on my beloved Novolog. Apidra just isnt for me. Too many lows right after eating and highs after the 2nd hour. Who wants to screw around with adjusting a new insulin when Novolog works miracles for me!?

I woke up at 113 this morning then checked my sugars every hour until the ACTH test was done. I saw 118, 116, 114, and 101 staring back on my meter screen :) YAY! The injected cortisol didnt screw with my numbers! It did however, make me nauseated. And, my Nurse was a chatter box which gave me a headache. BUT, she knew I was DYING for my morning coffee so she gave me a to go cup of coffee RIGHT AFTER TESTING!! I also learned her sister was T1 dx at age 12, so it was nice to know she KINDA understood my worries of going low during testing. Bad news is, I also heard all about her sisters D complications and struggles with severe lows!! :(

School. UGH. Maddison's numbers are starting to go a bit bonkers at school. Maybe I decreased her bolus by too much today (-.2) because of yesterdays 58 just 1.5hrs after breakfast. Today she was 231 for her first check, then 213....good by lunch time and great the remainder of the day. UNTIL after dinner when she crashed. Now she's sleeping with the CGM blaring alarms for a 268 with one up arrow. FABULOUS. Here we go....back are the sleepless nights of highs and chasing school numbers!!

My furry "D"

From Foster Bird


Diego or "D" our Golden, is looking older everyday. He'll be 9 in December and we have had him since he was 6wks old. He drives us BONKERS because he is OBSESSED with playing ball. The other day I found 2 golf ball size masses on his neck in his Lymph node area. They werent there a week ago. Infection? Maybe Diabetes? He's lost a ton of weight although he drinks and eats like crazy. Diabetes would be easy....but Im pretty darn sure he has Lymphoma. Needless to say, Im devastated. I already mentioned to the kids that things dont look good. Then, today I caught his eyes in the light. He has blood pooling (internally) inside the bottom of both eyes. Thats known as Hyphema, and shows up when other things systemically are not good. So, tomorrow Im taking Diego in to see the vet, even though he seems perfectly fine in every other way. He still played ball all day today and enjoyed his evening walk. Maybe Im wrong. I'm hoping Im wrong. I know in my heart that Im right. My poor Diego. My kids will be devastated, I already am.

Monday, August 9, 2010

The first day and CATS!

This morning my Hannah was off to start her new school year as a FRESHMAN!! I still cant believe it. Really. I do believe this is why Im entering a mid-life crisis! How can I have a child in high school!!??
Dont let her shy look trick you.

Maddison was excited for her first day of 4th grade today.
She was up early and ready to go. Maddison always likes the first month of school, then it goes downhill from there. I'm determined that this school year will NOT be the same. We meet next week to review her IEP and if I have to get mean and ugly I will. As I said....this year will NOT be the same. They WILL hear me. :)

Im shocked to say that Maddison's blood sugars were PERFECT all day today for back to school! Im amazed. Thankful. Did I already say amazed? Nothing under 100 and nothing over 150. Thats about as good as it gets. I was SOOOO happy when I saw her numbers come home. My Maddison got to enjoy her day WITHOUT Diabetes invading!! Now, lets hope this continues. I'm not expecting it to by any means, Im happy to even take the one good day I can get!

Maddison does have the CGM on since yesterday but its been useless since last night. The high alarms went off at midnight, 1am, 2am, and 4am. Yes, Maddison was too high in the low 200's but the CGM was off by over 70pts saying she was nearly in the 300's. I didnt get much sleep to say the least. The CGM caught up by this morning being accurate within 5pts, but was off by 70pts again midmorning. After school the CGM was back to within 20pts of her fingerpokes, so hopefully tonight I can trust it. We shall see.

Cats and Kittens? Ahhhhh yes.....Last week Maddison started to volunteer at a Kitten/Cat rescue just blocks from our home! BLISTERED WHISKERS. Maddison has never been THIS excited. Maddison is still volunteering at the bird rescue too, so she has been kept very busy. We have spent HOURS at the rescue every day because they are short of volunteers. Its a disgusting messy job to care for hundreds of kittens in cages, but the place itself is amazingly clean and organized. Maddison and I have worked our butts off trying to keep these kitties cages clean! One day Maddison should know I do this for HER!! :) Of course, the best part of volunteering is being able to love the kitties when all they want is someone to love them and hold them. I guess I can forget all the hard (GRoSS) work we do when I see the kitties getting some play time and happiness in their caged up family-less lives. Its heartbreaking. I'm addicted. I'm turning into a crazy cat lady!

I think of these kitties now every morning and just want to get them cleaned up and get them out for play time! You should see how they appreciate your love. There is nothing like a shelter pet!

Sunday, August 8, 2010

KINKED! Apidra and CGM

Saturday evening when I changed my site, OUCH!! That one really hurt! I used the back/side of my love handles like I always do, so why do some sites just hurt and send shooting pains all over? WEIRD.

I also filled my pump with APIDRA insulin for the first time. We have very little Novolog left, and I'm saving that for Maddison. Im the Guinea Pig this time. Apridra is a fast acting insulin that starts to work quicker than Novolog and peaks much sooner, around the first hour. Im not so sure its going to work for me since I dont tend to "spike" after eating, and so far I've had ALOT of lows. I dont like being a Guinea Pig!

Back to Saturday evening....dinner was planned at my Moms house....my BS was 104 when we left. I didnt bother to check my BS before eating, because Ive been in range all day the last month or so anyway. That was my first mistake.

After dinner I felt it. My eyes were burning and glossy. Thirst took over. I wanted to sleep. 386. HMMMMM....first I assumed I bolused the whole wheat pasta wrong on a square wave. Then I blamed the Apidra. I was sure Apidra just wasnt for me. I corrected. I rechecked 40 minutes later.....408. Ummmmmmmm....DUH! It must be a "bad site"!! I have never, ever had a "bad site" in 4 years of pumping. Ive had sites that dont work well, but never a "bad site" that was ruined right from insertion!

If this were Maddison that just ate 80c for dinner with a bad site and no basals for 2 hours she would be HI. As in, 700's, 800's.....who knows. I was lucky to be 408. I was UNLUCKY because I didnt have a spare pump set in my purse and Josh had left for a poker game! I was left at my moms with just syringes!! So, I injected 2u and thought I'd watch and see how "fast" this Apidra works. 40 minutes later I was 306. Thats pretty darn fast :)

Long story short, when I arrived home later that night and pulled out my "bad site" and it was entirely, completely KINKED in HALF. No insulin for nearly 5 hours (except the 2u correction) and I was still on my way down with some super duper fast acting APIDRA. WOW. Im impressed. AND, it looks like my broken pancreas still produces enough insulin to keep me safe, being that I never had ketones and never hit HI. Im not your average person with Diabetes, thats for sure. I think my next labs I might request a Cpeptide :)

The CGM.......Oh......Today Maddison cried. She hid. She refused to come out. She pleaded with me to not insert the CGM. Maddison has never even seen the needle! She just doesn't want to wear it. I know Maddison is playing with my mind. I know that she plays up "hating" the CGM simply because if she has a choice to wear it or not, she will 200% say NO! I cant blame her, and I dont doubt that sometimes that needle does HURT! I know the CGM is a nuisance when the tape itches. It is painful when you bump it. But tomorrow school starts and I NEED to see whats going on in that little body of hers!

The trends. The trends that the CGM shows is priceless. I can sleep a 3 hour stretch at night and simply scroll back through the hours and see exactly where Maddison starts to go high or low. Without a finger poke every hour. Without guessing. The school day? I can SEE on a graph exactly how her body responds to waking earlier, breakfast, and the first school bell of the year. Sitting at a desk all day. Anxiety. Excitement. Recess. As much as I HATE to force the CGM on Maddison, right now I vote for technology. I have to.

I know in my heart Maddison makes the CGM worse than it is. She really does. Its a power struggle. Maddison wants to have the voice to say she chooses NOT to wear the CGM. I understand that. BUT....when as a parent do you make the choice for them because you know best? If Maddison wanted to stop using the pump I would agree. **IF** she adjusted well to injections, I would surely do everything in my power to make injections work. If Maddison struggled with highs, lows, or extremes and failed to take injections with every carb eaten, then I AS THE PARENT would have to say the pump was a necessary part of her health. We have to.

Its hard. I feel guilty for Maddison's tears today. I dont want her to have to wear the CGM. Mom knows whats best. Right now, the CGM is best. Maddison and I made a deal.....As soon as I can make adjustments to her insulin for school days and maintain safe numbers she will not have to wear the CGM again until things go bonkers. I always try my damnest to avoid the CGM. She knows that. I hope some day she will actually understand why us parent do what we have to do. Until then, my heart aches for forcing this on her, yet at the same time I rejoice in the power of latest technolgy!

Thursday, August 5, 2010

ME

Most days with Diabetes we just do what we have to do without much thought. Poke tiny calloused fingers. Dab blood onto tiny strips. Count carbs. Dose insulin. Recheck. Correct. Treat lows. Treat highs. Move on. Its just routine in our lives with Diabetes. Most days Diabetes doesn't bring much thought or emotions. But, we all know about the "bad" days or difficult spells when nothing seems to turn out right. Highs. Lows. Ketones. And then you step back and realize....ME, this is all up to ME.

Diabetes has to be one of the few diseases that are entirely self managed. Parents make the adjustments to insulin doses without any medical advice. (once you are comfortable) We manage exercise, food, growth spurts, illness. We make the call. Me as the parent, I know best what adjustments need to be made. It comes with experience. Time. Knowing every detail of your child's day. Parents with Diabetic kids are keeping our children healthy. ALIVE. We are their future of health. Yet all we can do is our best.

ME. Its all up to ME.

Leaving work yesterday I mentioned to a co-worker that I was stressed for school to start Monday. "Oh but Maddison's older now and can take care of herself" she says. "Maddison will get herself figured out for the new school year, you shouldn't worry" she says.

I just wanted to scream.

Outsiders don't know. They don't know that Monday morning when school starts Diabetes as we have known it all summer will change. Insulin doses are likely to double. Why? I dont know for sure, but it never fails to amaze me. Its not sending Maddison off to school that is the worry. I know she can care for herself with guidance from the nurse. Its not that.

The stress is, its up to ME to figure out where to adjust insulin dosing for out of range numbers. Starting Monday with the return to school, Diabetes will be WILD. UNPREDICTABLE. It never fails. Do you know 300's and 400's are not uncommon in our children? Most people would be SHOCKED to know that sometimes Diabetes inflicts these kinds of numbers. Sometimes, it takes weeks to figure it out. Technology has brought insulin pumps. Insulin pumps can provide superior blood sugar control if WE as parents get the doses right. With an insulin pump we manage insulin dosing by the hour. Thats alot of mind work to get each hour right.

So where to start with adjustments when every blood sugar pops up wrong? 6am? 7am? Noon? Basal? Bolus? Correction factor? If you dont get morning doses right the entire day is likely to be a mess. And that hurts my child. It hurts her body. It hurts her mind. It hurts ME.

Me. Its all up to me. Now what the hell is the problem after lunch? Is it a wrong carb count? Zooming around on the playground? The AZ heat? Basal? Bolus? Is she going through a growth spurt so conveniently as the first day of school starts? Bad site? Should we stop using her arms and move to her tummy? Stress? Anxiety? What is causing these crazy numbers?

I'm stressed out when Maddison's blood sugars go wild at school. I'd be lying if I pretended I just adjust insulin doses and move on without worry or concern. Wild blood sugars happen. They WILL happen on Monday as school resumes, they always do. Maybe Maddison will be sitting at school all day high. Highs hurt her body. Highs keep her feeling ICKY. Headaches. Thirst. Tummy aches. Highs keep Maddison from cognitively being herself. She misses out on class time when going to the nurse. Missing out on class time means Maddison is missing her education. It is a dominoe affect, and its all up to ME to get her numbers under control.

Maybe this year Maddison will start back to school with lows. Her little heart palpitates. She's confused. She can't walk without her legs feeling like jello. She is sweaty. She is pale. She feels the life being sucked out of her.

ME....Diabetes is all managed by me, and it hurts my heart when I don't get it adjusted just right.

One messed up day turns into 3. I do everything I can to track numbers. Logging every detail of her day. I change this. I change that. Sometimes you make it WORSE. Sometimes you cause serious lows. Or serious highs. What you adjusted wasn't right....or, maybe today is just different than yesterday. How was I to know? 3 days of chasing numbers turns into a week. A month. Sometimes it takes weeks or months to adjust insulin doses just right. And then, after what was hopefully a nice long spell of "control" it all changes. And we start over.

ME. Its all up to me, and sometimes I despise that. Where is our freaking cure anyway?

I know in my mind all I can do is my best. I know in my mind that its not my "fault" when nothing works out right. I know in my mind I shouldn't stress over the low I "caused" or the highs that haunt all day. But my HEART feels differently. My heart hurts for every wrong number. My heart is angry when I can't get it right. Id be lying if I said it didn't affect me right down to the core. I know myself what that low feels like. I know how that high day makes you feel. I know what 32 years of crazy blood sugars can do to a person. I lived it as a child with my Dad. Faced my own diagnosis. Watched my father suffer for years, and die in my arms because Diabetes is a SICK unpredictable disease. Maybe that's why every number hurts my heart. Maybe that's why I stress.

ME. Its all up to me. I keep my child healthy. I keep her from highs. I keep her from lows. Or, at least I try my best. All I can do is my best. I know that. But, sometimes like now when I am faced with back to school craziness I start to worry again. I feel the pressure to "get it right" and can only HOPE it all falls into place quickly. Without hurting her along the way.

Monday, August 2, 2010

Reminder. Back to school with D

For the first time since Maddison's diagnosis in 2006, I feel comfortable....even READY to send her back to school this year. Maddison is so much older and responsible now, and we are very fortunate she has never had trouble sensing her lows like alot of people/children with Diabetes. Of course, my biggest comfort by far is our school Nurse who has cared for Maddison since day 1. I could never feel this level of comfort without her!

Then came a reminder. For just seconds it all flashed through my mind.

Today was time to gather the supplies Maddison will need in the Nurses office for the school year. Supplies Maddison needs to manage her Diabetes. Supplies that keep her safe, healthy.....ALIVE. Supplies that most parents don't have to gather for a new school year. Diabetes flashed through my mind, and then entered a twinge of anger and sadness...fear.....becuase in our life, we DO have to think about these things. Always. The emotions of Diabetes will slap you in the face when you least expect it. Even when you were just trying to get ready for a new school year.

Most days we forget the seriousness of this disease. We forget that our child is kept alive by a precious hormone that their body no longer makes. We forget that the insulin pump attached could fill with air bubbles blocking insulin from entering their body. Without insulin, blood sugar will rise. Without insulin, my child will die. Packing up school supplies.....a reminder.

Parents that have children with Diabetes are forced to set aside our fears. Day after day after day. We must move on past yesterdays scary lows and manage for today. We fight the highs. We track patterns. Every day is different. We can only do our best. Stay diligent. This all brings a bit of fear to life. We are only human. We are not a pancreas. Reminders. As parents we must stop the worry in our hearts for our children's future. We hide our worries of sudden death, kidney failure, blindness. We must send our "D" kids off into the world with faith that they will be safe from a medical emergency at any moment. Its hard. Back to school is TOUGH for all parents that have kids with special needs! Today, I was reminded.

So what does a T1 kid need at school?


Blood meter
Test strips
Alcohol swabs
Extra meter batteries
Control solution (to make sure the meter is working properly)
Lancets
INSULIN
Pump supplies
extra pump batteries
Syringes for pump failures

Carb book
Instruction manual for Insulin Pump
DETAILED 504 TREATMENT PLAN IN PLACE! Revised each year!
Log book


Endless juice boxes
Glucose tablets for lows
Snacks for lows
GLUCAGON INJECTION FOR Low EMERGENCIES!! (seizures, loss of consciousness etc)
Glucose gel
More snacks for lows
Low carb/no carb snacks for highs
Endless water bottles for highs
Special no carb drink replacement for class parties
More snacks
More glucose tabs

Stress. Excitement. New sleep patterns. New waking times. New routines. It all changes Diabetes management. Growth spurts. Illness. Weather. Sitting at a desk all day. Running around the playground. Here comes the new school year. As much as I find comfort in my heart for this new school year, the reminders are always there.