Tuesday, July 24, 2012

This chicks not on 'Auto-Pilot'...I'm on 'Auto-Immune' !!

LOL... yes, being a juvenile diabetic we've all heard the words 'Auto-Immune' for most of our lives. And for those of us that DID get JD from an attack of the pancreas, we know (although it is still a mystery more often than not) that by some act of mutiny by our own bodies - we were attacked and our pancreases were left for dead ... literally!
I always thought when I was younger - and newly diabetic - that you could only get one disease in your lifetime ... you know, some have cancer, some have lupus, some have thyroid, etc... but the older I got, I see that it NOT the way it works at all ... especially in a body that is prone to 'auto-immune' diseases.  So besides the juvenile diabetes and the low-thyroid, I have recently found out that my body is allergic to gluten, or in auto-immune terms...Celiac Disease. 
Let me tell you a little bit about the Celiac ... its rather interesting that I've gone to several so called 'specialists' in the last dozen or so years ...yet, no body has ever told me that I had this recently, but I was really glad that my current Endo did the 'high end' blood test and found that this is what I have. I guess, too, the fact that my symptoms were a little opposite of the 'usual' symptoms experienced by those with Celiac, plus other doctors (including my family doctor) would always find a way to say it was 'age', 'weight', or the 'juvenile diabetes' .
I was at work, May 17th, and it was a typical day ... cereal in the morning, oatmeal for a snack in the mid morning, Jimmy Johns sandwich for lunch, and then.... a phone call from the doctors offiice.  The nurse on the other end of the line started to tell me that my blood tests came back and I tested positive for Celiac Disease ... well, I didn't even know I was being tested for this, but I said 'thank you' and began to research everything that I could on the internet - as quickly as I could !  It didnt seem toooooo bad, but then again I was thinking this is it...I have to do this ..just go cold turkey and do this now!!
The more I read the more I decided that this might be a 'blessing' in disguise ... and you know what ?!?  After being 'GLUTEN FREE' for 10 weeks (in 2 days) ... I have a ton more energy, my choices of food are healthier on average .. wtih the occasional McDonalds Egg McMuffin - minus the muffin !! LOL!!
There are so many choices now a days for celiacs ... there are markets that actually make home made gluten-free pastries, cakes, donuts, etc.. and they even have gluten free pizza in many of the main stream pizza places !  I do eat a lot more salads and drink a lot more water than I used too, but this is part of that 'blessing in disguise' for me!
So now I am a Juvenile Diabetic wtih low thyroid and have Celiac Disease ... BOY! What a total random mix of activity going on in my body ... hmmmmm... wonder why 'weight loss' can't be part of the 'auto-immune' plan !!  Just my thougths !!

Thursday, April 12, 2012

SERIOUSLY ...? And YOU'RE an ENDOCRINOLOGIST ??

HA!  Being a Juvenile Diabetic does  not make me a 'rocket scientist' (too bad, then I really would qualify for being 1 in 1,000,000) , nor does it make me the 'smartest girl in the room', but SERIOUSLY...you're an Endocrinologist ??!!  I would hope that in my 26 years of being a JD - pump wearer for 6or7 of those years, that I've gained some knowledge on this disease, and have grasped some idea as to how the disease functions in my body, and what it is that I can do to help ease the 'sick' feeling that I get when I know something is just...'off'.   However, because I can only go on the facts of how I feel, how I've been feeling, and how I don't want to feel, I have an Endo (short for Endocrinologist) that I see regularly - and she is supposed to be someone that I can trust for 'top-notch, 'I'm worth the $45 co-pay' medical service' ... You would think !!

Let me start from the beginning ... I've always had male endo's, which were fine - but getting to be a little older and starting to experience some womanhood situations (you know...like the hot flashes are beginning, possibly a family to start, etc..) I wanted to see a female endo that could relate.  I searched thru all the great online resources to find one that would be specifically in my region, area, county, in my insurance network, at the best hospitals in my area, etc.. So this was not taken lightly by me!  And then...EUREKA !!  I thought I has struck gold!  There my new doctor awaited in a picture on the web - with credentials that would knock your socks off... she had done it all and seemed to be a pioneer in her own right with some of the extensive classes, certificates, and fellowships that she had done.  On the internet and on paper, I was impressed - and it takes a lot to impress me when it comes to my medical care !  So, I called the office and made my appointment, got in rather easily, and thought to myself 'this is going to be the answer I was looking for'.  The appointment was nothing to be amped up about - it was an ordinary 'hi, nice to meet you, lets take your blood pressure, lets check your feet, here are your prescriptions, now where's my $45 co-pay' type visit.  And that routine lasted for the next year and a half worth of visits - with each visit growing less and less enchanting.  What made me decide to find another endo you ask ...?  Let me tell you !!

Fast forward to January 2012 .......  One Thursday night in the beginning of January, I was getting myself ready to go to bed (like any other Thursday night), got out of bed, checked my blood sugars, bathroom, teeth, and then to fill an ever 'hungry' insulin pump.  But, when I went to go and prime the pump - it began to count down some weird sequence of numbers and gave an E-70 error, then it went dead.  I'm not talking still working but won't rewind dead, I mean - the whole pump just shut itself down, dead.  Now keep in mind that the time is just after 11:00pm and there isn't anything I can humanly do except to call the manufacturer of the insulin pump's 24hr service line. They were most helpful (Thank you Medtronic!!) and they did let me know that the error was cause by my pump being in contact with an x-ray machine or an MRI machine, etc..  Well, that made tons of sense - since I get x-rays of my feet done when I'm at the podiatrist, etc...and I've never thought/been told to take off my pump.  They were sending me out a pump ASAP...but being that it was now after midnight they would have to send it out the next day and I wouldn't receive it until Saturday morning.  Okay - so what do I do now ...?  I told my mom what was going on, and the plan of action was to take small units of insulin every 1.5 - 2hrs since my body was used to having a steady bolus of insulin - and now it would be getting nothing close to that ..Yikes!  So, good 'ol mom .. she grabbed her pillow from the other room and nestled herself next to me in my bed with an alarm clock ready to wake her and I every 2 hours.  So for the next 8 hrs that night I was awoken to the sound of an alarm clock to take a blood sugar reading, and to administer a small amount of insulin via syringe (something I haven't had to do in years !).  In the morning when I woke - did I really sleep, though? - I called my Endo - who was, of course, not in the office on a Friday... 'cuz when you make that kind of money - you DON"T NEED to work Friday's and Weekends, and nights, and the girl in the office said I could come down and get an insulin penlet and some syringes.  I made the trek to the office and picked up the goods - and went back home to try and keep the bg's as close to normal as possible (bg = blood glucose).  The entire day was spent giving myself small doses of insulin and another night of my mother laying with me and waking me up ever 2 hrs...I couldn't wait for the new insulin pump to arrive ... I was like a child waiting for Santa Clause to arrive on Christmas Day! HA!   10:30am - the pump arrives and I am opening it with much gusto - I set the pump settings that I was given from my endo (yes, they were all old settings...she never kept the updated settings in my file, so I made an educated guess on where I should be / was) and the pump began to work it's magic.  Ahhhhhhhhhh... the thought of Novolog insulin running thru my veins and breaking down those sugars was music to my ears !!!  LOL.    I thought the worst was behind me ...

This is when the real fun began.

Thru the next 90+ days I was not feeling my 'old self'.  True, I am 'old', but I wasn't feeling well ... I thought flu, sinus - since we've had such a mild winter, food poisoning, and even went as far as to think 'pregnancy' ... OY!  So, I began to eliminate what it could have NOT been ... pregnancy, check!  Sinus, check!  Flu...maybe, Food poisoning ... possibly.  Mom and I had gone to dinner the night of the Superbowl - to my favorite sushi restaurant, and I thought maybe I couldn't tolerate the sushi, etc... Who knows!  So I had to take the day off of work due to the nausea and the dizziness I was encountering.  Two days later - still no change.  Flu ?  Okay, maybe it was the flu..I thought !  then the bg's started to go high during the day - and I would take enough insulin to cover the spikes, but they were not budging.  I was eating fruits, veggies, whole grains, I was on Weight Watchers and was losing weight up to this point - so I knew there was something going on ... I just didn't know what it was.  It was at this point that I began to wake up @4:30am with extreme low bg's as well ... Hmmmm...high all day and really low in the middle of the night.  I would frantically check my pump settings, I would check to make sure all the tubing and needles were in place correctly, etc.. and I was truly baffled.  This went on for the next 20 days.

My birthday - February 25th - went to dinner and the casino with the BF and another couple.  We had a great dinner, although I hardly ate because I wasn't feeling too well, and then off to play a few slot machines!!  Up a few dollars - we all took off before our luck ended.  When I got home, I discovered that my bg was over 500 ...infact it was almost 600/  and I was baffled because, once again, I hadn't done anything that I wasn't supposed to do... I ate next to nothing (and certainly not enough to make up for the $37.00 buffet), I only drank water and un-sweetend iced tea, and I KNOW my sugars shouldn't be that high.  So, I took enough insulin to cover the high # ... it was close to 18 units, but I knew that in a few hours I would be good as new !!

That moment never came .... my first memory was 'dream like' ... men, standing around me - me looking up, and in unison they were all calling my name, asking what I did last night, asking me questions that I couldn't answer.  Then I remember the cold air and feeling cold.  Then my next memory was of my arm burning...my right arm.  It was on fire (or so I thought) and I kept asking these strange men if I had a heart attack ?!?  The dream was a real odd dream - until I became conscious enough to figure out where I was!!!  I was in a hospital ... I was at Mt. Clemens General Hospital ... and those men in my dream with the buzzed hair cuts, well, those were obviously the firemen and paramedics - Yikes!  Thomas left work and was by myside and I was finally released to go home shortly after 12pm.  BUT WHAT WENT WRONG ...??  I was doing everything right !!  My head was starting to hurt with all the thoughts of how this happened running thru it.  So I replayed the night of my birthday back and forth, forth and back ... atleast a hundred times - trying to figure how my blood went from almost 600 down to 19 ... baffled, and bewildered, I called the on-call dr at my endo's office and was told to call the next day (Monday) and to come in to see my doctor.

The next day ... with my mom in tow ...we made the ride out to the Endo's office and gave her all the questions to her answers.  There was no blood taken, no exam, no testing of any sort ...just questions.  She seemed to be 'Out of it' ... as her wig was matted down and sideways (this made for a great laugh) and she wasn't talking in right sentences.  I was already disenchanted with this office and the care I was receiving - and this was really embarrassing to be happening in front of my mother!  So after checking my pump settings, going thru my readings, and my meter readings - she is telling me that what I am saying doesn't make sense. She is telling me that I am extremely high at night and low all day long - per the readings. I am trying to tell her that this is not the case - and I am not sure why I am going so low in the morning.  She again tells me that per the numbers, I am wrong.  THEN SHE THROWS HER HANDS IN THE AIR (IN FRONT OF MY MOM) AND SAYS 'I DON'T KNOW WHAT'S WRONG, I CAN'T FIGURE THIS OUT'.    Hmmmmmm.  So I pay the $45 co-pay (cuz she's a specialist) and I go home...more confused then when I went in!

Fast forward to 12:47am...

So I am up - and inserting the CGM to my abdomen area (cgm = continuous glucose monitor) and wanting to see what is really going on with the pump since this will take bg's ever 5 minutes.  So I am checking to see when my 'calibration' is due ... and it says 1 :34am on the pump, I look at the clock in my room and it says 12:47am, I look down at the pump and it is the same time 12:47 ... BUT WAAAAIIIITTTTTTT... it says PM instead of AM ... OMG, OMG, OMG... I THINK I JUST FIGURED IT ALL OUT !!!!!!

I ran to my moms room and told her the great news !!! IT'S THE TIME !!  IT'S THE TIME ON THE PUMP ... that's what was soooo wrong !!  We were all relieved .. really, seriously, relieved !!  It's as if a huge weight was lifted off of all our shoulders !!  I couldn't wait to find out if this were the actual reason ... I mean, it had to be, right !?
So I changed the pump time from PM to AM (where it should have been all along) and went to sleep knowing that the worst was over for now !!

As for the doctor that gets paid big money and cant figure out it was the time on the pump ... She is history!!!   :)