Saturday, November 14, 2009

November 14th



Today I am thankful for insulin, thankful that Maddison and I are alive another day because of it. I appreciate syringes, finger pokes, testing strips, meters, insulin pumps and CGM's. Most days we don't really think about how all these things actual keep us ALIVE, but today we ar thinking. We are thinking alot. Thinking of all the others young and old out there that live this life just the same. I'm pretty silent today, I dont have much to say as I thought I would . Just alot of thoughts going on nside my mind about what this day really means. From the bottom of our hearts, Maddison and I are sending special cyber ((HUGS)) today, to all the D parents, the children with Diabetes, adults yound and old. Type 1's, Type 2's and all Type 3's. Hugs to anyone who loves someone with Diabetes!!!

Thursday, November 12, 2009

Found Feathers

Tonight we got a call from someone that thought they found Maddison's lost Cockatiel. We were SO excited! After school we made the 12 or so mile drive down to the University of Phoenix Stadium. Some of the office staff there had been holding the bird a few days, trying to find his home. Our birdy flew to the stadium!!??

Sadly, this wasn't our Cockatiel. BUT, we decided to take him anyway. Maddison presented the nice lady with her business card (yes she has an actual business card with HER name on it) and told her how she volunteers for Fallen Feathers bird rescue, and let her know we will contact the rescue about this bird and foster him until we find his home. This super nice lady was very happy we were willing to do so, and turned the Cockatiel over us. So what came next? As soon as we got home Hannah went to work for her sister....Ms Hannah, the best big sister EVER made Maddison this website in support of Maddison's desire to help all other lost pet birds.....

Found Feathers

Now THAT is what I call sisterly love :)

Is this thing working!!??

Day 2 of the CGM, it hasn't caught a low yet, though it does alarm AFTER I already know I'm low. (my low alarm is set at 80) I wasn't low low, just another 68 that FELT low low. My meter said 68 but the CGM said 85. According to the CGM I dont even have Diabetes!! I'm thinking it isnt tracking blood sugar rises accurately. Here is my last 24 hours......



Is that even possible? Is this thing working right?!!

Each finger poke today again revealed a number within 20pts of the CGM. EXCEPT after eating! (my highest meter reading today was 129 half an hour after eating and the CGM said I was still 75) I thought people say you can calibrate this thing well enough to be within 2-5pts? I have yet to see 2 up arrows or 2 down arrows indicating a rapid change in my blood sugar, so why didnt the CGM keep up with the rise? I think an experiment is needed to see if this thing is working right....I guess I should do a test! A candy test!! Where is that Halloween candy anyway? I think its time for me to do some experiments on myself. Ohhhh the torture :)

Above is my last 3 hours....a flat line. Hmmmm....Is this thing working!!??

Wednesday, November 11, 2009

The first 24 hours

After the CGM failed to catch my 51 blood sugar at 1am, I was a bit sketical if the darn thing was calibrated right or not. After my morning blood sugar check and over the next 7 hours, the CGM was within 20 points of what my meter blood sugars came back at. I suppose thats a decent calibration, but when I started to feel spacey with a 91 on the CGM (around 3 hrs post prandial) I knew I was really in the 60 range. Yep. Quick meter check showed 68. So what the heck? I can already see where this thing is going to almost be more work and worry than its worth. Trust is a big issue. I have my low alarm set at 90, knowing the lag time between blood and intersistial fluid. So, would the alarm ever have caught the low?

I was also relieved to see that my highest number all day was 148 after morning coffee. The CGM reflected that my BS remains incredibly stable, moving just a point or two up, instead of spiking, even after eating. No arrows pointing up today (showing fast increase in BS on the CGM) what so ever. TOTAL flat lines!!!AWESOME! Exactly why I try to pre-bolus everything! So, from 8am-2pm my BS stayed between 90 and 148, mostly hoovering in the 100 range. Thank you CGM!! That made my day to see a flat line!! Of course, thats just one day.....but I'll take it!

When I got home from work I got a little greedy and wanted a tighter calibration, so I took my number (68) which was stable from an hour earlier, and calibrated that. The CGM reflected it immediately. Then the hunger set in. I waited the recommended 20minutes before eating after calibrating, then had some chips with melted cheese and salsa. YUM! The CGM is now 70 points off!! It never caught up to my rising blood sugar!! 30 minutes later my finger poke says 170 but the CGM still says 103. ACK!! Thats what I get for being a greedy CGM user I guess. Now I wait and see if the darn thing ever catches up.

Which maks me wonder....how the hell would I ever be able to get a good calibration on a 9yr old who is running, eating and jumping all day? It already seems impossible. Trust? Ahhhhhhhhhhh. The first 24 hours with this CGM and I have learned alot. I spent 6 hours last night reading the ins and outs from other users on the CGM users yahoo group. Yep, I've learned alot. But I've also got some serious doubts when it comes to ever making this thing work for Maddison. I'm anxious to see how many days I can get out of one sensor. I'm totally addicted to looking at my number reflected there on my pump every few minutes too. I must have looked like an OCD chick all day at work, LOL!!

Flat Line

I dont know what happened to the low blood sugar "alarm" that should have sounded when my BS hit 51 at 2am....CGM was still reading in the 120 range. (I had a correction before bed that caused the low) But this flat line makes me pretty darn happy, assuming it is accurate of course! :)

Tuesday, November 10, 2009

Look what I got!

Yesterday I was serious when I said I won't be blogging until I have something nice to say. Well, guess what?! I do have something very nice to say!! Look what we got!!!


Our Minilink CGMS came today!! I couldn't even wait for training before giving this new gadget a try!! I know, bad me! I read the books and studied for about an hour before I told Josh to slap it on me. I'm wearing it on my lower back area, the "muffin" area where I have the most chub. Not a bit of pain with insertion, but let me tell ya....that needle is intimidating!!


Already having the pump meant the insertion of the sensor already made sense in my plastic pancreas functioning mind :) Too bad I can't get the pump to respond with anything but a "BAD SENSOR" error!!!

Actually, when I first started the sensor, the transmitter was communicating with the pump just fine, then after about 20 minutes it alarms and says the sensor is weak. -SIGH- And so, now life goes on with me having to troubleshoot yet another device and question all sorts of new things. We shall see what this CGM has in store for ME before inflicting its irritations on Maddison. Once I feel I "get it" I'm supposed to try this CGM out on Maddison. Maybe. I'm still leaning towards anti-CGM for Maddison (for MANY MANY reasons) but after all her crazy lows at school I have to approach Diabetes with an open mind and simply aim towards safety at this point. Wish me luck in getting this darn sensor to work!!!

Monday, November 9, 2009

Torticollis and crazy medical expenses

It never fails to amaze me just how quickly the day can turn from one plan to another. A typical Monday morning, dragging the kids out of bed, making breakfast and lunches while the girls giggled at the silly birds whistling in the other room. I dropped the kids off at school, then suddenly they turned around. Maddison started to run towards me waving her hands, as Hannah fell behind holding her neck with tears streaming down her face, sobbing. Oh great. Here we go again.

This is the 3rd time Hannah has had this kind of pain. The first onset came back in August, an entire 28 hours after an 8hr long sand volleyball tournament. Hannah was fine until SUDDENLY her lower neck/shoulder area spasmed in pain. You would think she broke her neck in a traumatic car accident. She SCREAMED. PANICKED. CUSSED (like a sailor!! SHE GETS THAT FROM HER DAD!)Hannah wouldn't move. We were right in the middle of a family party and she never came out from hiding. She cried in her room for hours instead. Full tears. We have all slept on our neck wrong or had neck spasms.....and YES, it does hurt and it does spasm alot....but 3 times of this same extreme pain followed by stiffness and inability to turn her head for days? I dont think anything is normal about this.

I'd like to think Hannah is a drama queen, but I always remember when she flipped off her bike in 5th grade. I talked her through the pain, even all through the night. Her arm looked fine. I sent her to school the next day and the nurse ended up calling. Swelling finally set in, so Dad picked her up from school and went to the Urgent care. Fracture. Right there on the xray, plain as day. Maybe she isnt such a drama queen afterall. I win the best mom award for that one! :)

Hannah's second issue with this pain came weeks later. No volleyball involved, and the pain struck just as I was dropping her off for school. I wondered if the weight of her back pack triggered it. Same thing as the first time, though not as severe. Same side. Same generalized area. I took her to the PED anyway. We were referred to a Sports Medicine doctor, urged to stretch before playing volleyball and told to apply ice as needed. Diagnosis, rotator cuff injury. Hmmmmm......

Today for some reason I felt we were looking at something else. Why the sudden onset AGAIN? Why is the pain now on the opposite side just below the base of the skull? Why the dizziness in weeks past? Hannah's was freaking out in pain. Surely this is a nerve thing right? After the first experience with this pain I read about everything from "Impingement" to over use stressors to muscle weakness. The whole base of the skull thing freaked me out. So, we proceeded to the Urgent care.....when they were closed I said SCREW IT. We will go to the ER and hope for a better answer. $150 copay is worth it to ease my mind and alleviate Hannah's pain right? NO. I guess not.

Diagnosis "Torticollis" per the ER doc. Motrin. Ice. Follow up with your PCP in 5 days. Continue to see Sports Medicine. (which we never scheduled because we thought this was a simple sports injury that went away!) The ER doc did manipulate Hannah's neck and show me how to ease the muscle tension. But other that that, I wasted $150. UGH. Hannah's laying in bed. Has been for the last 9 hours. She can't move. I'm one to always believe there is a reason. Sorry, thats just me. I need to rule out everything else before I come to a decision on what I believe. I'm also a googler which means I've been reading about TORTICOLLIS for hours today as I sat with Hannah in bed.

Why do I do this to myself?

"Torticollis (from the Latin torti, meaning twisted and collis, meaning neck) manifests as involuntary contractions of the neck muscles, leading to abnormal postures and movements of the head.1 It is not a diagnosis but a sign of an underlying disease process. Cervical dystonia, spasmodic torticollis, torsion dystonia, and acute wryneck all refer to the same process. Most of the cases presenting to the emergency department present as acute, acquired torticollis, although other congenital and infectious causes as well as trauma must be considered."

SIGN OF AN UNDERLYING DISEASE PROCESS? WHAT?

"Torticollis is also often seen as compensatory mechanism for another disease or symptoms. Patients present with a head tilt to compensate for an essential head tremor or for diplopia secondary to an ocular muscle or nerve palsy. Pediatric patients need a thorough eye examination to rule out a cranial nerve palsy or congenital nystagmus. Persistent neck muscle spasms may require referral to a neurologist or surgeon."

Ok, can we just rule out any weird stuff first? How many times means "persistent?" 3 times? 5 times? A year of disabling pain? What about Volleyball? Hannah missed practice today, and she's very upset about it. This girl lives and breaths Volleyball. How long do I let this go before I insist on a better answer? I did get an appointment with her PCP, but I already know it will be useless and a repeat of the last visit. Ugh. Its so frustrating when as parents we have to rethink everything for the sake of our kids health.

Medical expenses......last month Josh and I were looking forward to open enrollment for his employers insurance. We were sure a different insurance plan would save us tons of money. Looking over our options the other day, I decided we might as well sell our damn house and live in a shack. Looks like cost has once again increased while benefits decreased. There isnt one insurance plan option that covers "name brand" RX's at any level. Nope. NONE. Our copay for "name brand" strips and insulin remains at $160. Is that freaking ridiculous!!?? Test strips x's two. Insulin x's 2......OUCH. Then there is the DME that isnt any better. DME is covered at 60/40. Times two. Two insulin pumps. I guess I cant complain that THIS time there will not be a max for DME. That is a huge relief. BUT, our deductible went up to $900 per family from $300 on this "superior" plan. Apparently they think unlimited DME makes a "superior" plan. ACK! Our expenses only get worse each time enrollment comes around!

In this past week alone Maddison went to her Endo on Tuesday at $40. GI specialist on Wednesday at $40. Therapist on Friday at $40. I went to my PCP for a potential blood clot at $30. Then to the ER for an ultrasound at $150. Then today Hannah went to the ER at $150. OUCH OUCH OUCH. The future shows an outpatient scope biopsy for Maddison at $300. Sports Medicine visits for Hannah twice a week at $40 bucks a pop. Dental visits for us all, test strips at $160 needed YESTERDAY, and CGMS on the way from Medtronic which will top $450. Healthcare expenses are overwhelming in this house. CRAZY. It makes me want to hide.

You may not hear from me for awhile. I think I'm done blogging until I have something nice to say. Seriously. Until then, I will just keep swimming. Just keep swimming.