Rollercoaster ride

I am still waiting on training for my CGM, had the thing for over 2 weeks and I literally had to call the gentleman that took my order to get someone to call me for it, who told me she would be out of town, but would contact someone else to come train me while she was gone.  That call never came.  My endocrinologist gave me the number of the senior territory manager out here, who I called to tell him the situation.  He explained that he was out of town at the same meeting, but would try to get someone for me, and if he couldn't, he'd personally come train me when he gets back on Friday.  It's now Thursday, this call was Tuesday.  As I've mentioned, I'm not exactly the most patient person, and I think in this situation, with the amount of time that has passed, I've been pretty darn patient.  I'm not usually one of those customers that complains, I have troubles sending food back when it's not to my liking (I went to Outback and had meat that was almost mooing, I pushed it aside and didn't eat it rather than telling them, I didn't want to seem difficult :P).  This time, it's warranted, food is one thing, but my health is quite another.
Last Saturday, my sugar spiked to 458, a number I've not seen or been close to since I went to the ER in October.  I corrected the number, and ate lunch, a few hours later, I was 394, I corrected that, an hour later, I was 148, worried I'd overdone the correction, I ate three glucose tabs(4 equals 15 carbs) and about 5 shocktarts (9 shocktarts is 15 carbs, per my ratio, 15 carbs = 1 unit of insulin and for every 50 points my sugar is above 135, I take 1 unit), I tested another hour later, I was 304, I won't do the math for my next correction, but it was definitely above 2 units.  I changed my infusion set the next day to see if maybe this was the problem and my sugars started sky rocketing again, not nearly as bad as the previous day, but anytime I'd eat, a few hours later, I was still above 200.

I got excited over this; to a diabetic, crazy blood sugars a few days before your Aunt Flo is due to visit usually means....pregnant.  I didn't want to get my hopes up though, but I tested the day I was due and it came back negative, and I was devastated, because this was the one month I'd actually believed we'd succeeded in our TTC efforts, I'd been ridiculously exhausted after 8 hours of sleep and I was using the bathroom more frequently, which can also be signs of high sugars, but after that one day, I was having normal readings too.
So I finally broke down and called my endocrinologist, my previous endo actually.  She informed me in April that she'd be moving out of her office and that they didn't want her telling her patients because they were afraid they would lose patients (ie-they'd lose $$$), but she told me because she didn't want me to get pregnant, then wind up without a doctor.  So when she didn't call back within a few hours, I called the endo that I'd chosen to go see next month for my 3 month checkup, they asked if I wanted to come in the next day (that's amazing!).
The doctor was baffled as to why my sugars were behaving this way, there's been no change in diet, the only thing I have changed, was where my infusion sets go:

For the last 9 years, my sets have been in my stomach, but since the CGM sensors HAVE to go in your stomach, I decided to start putting my insulin sets in my thigh, my endo assured me, that because of the fatty tissue (yay fat thighs!), having the sets here wouldn't be a problem.
I cited maybe hormones were to blame, my other guess, which I didn't share with him, was maybe my issues with depression.  I've been having a hard time with it lately and my counselor wants me back on meds and I did share that with him, but for now, we have no idea what's causing this.  I had to call him this morning because my sugar actually dropped to 36 last at 1 o'clock in the morning, and I over corrected with two juiceboxes, peanut butter and crackers to the point that at 6am, I was 230, then at 9am, I was 233 after corrected the previous high.  I changed my set at 10am, and at 11am, I was 242, so when he called, he just changed my basal rate again to go lower.
So I have a new endo that is awesome and aggressive about my treatment and getting my sugars under control, and most of my medical professionals (I say most because my GP is actually in the same office as my old endo, and the state of that office is the reason she's actually leaving, so I'm thinking about getting a new one) are really amazing doctors that know what they're doing!

CGM and TTC

Well, I am currently in possession of my own contintuous glucose monitoring system.
To most, it's seen as yet another catheter to go under my skin, to me, it's the start of a better life with my diabetes. You see, not only does it measure my sugars every 5 minutes, it helps determine patterns in the readings to make it easier to make a better treatment plan.
The sensor gets inserted into my abdomen much like the infusion sets off my insulin pump and takes glucose readings from the interstitial fluid, then sends them to the wifi transmitter (that's right, I will now have a wifi transmitter(though it's more like a radio transmitter) attached to me at all times), which then sends the readings to my pump. It also comes with a USB with wifi that will transmit all the info to my computer so I can print out graphs and bring them to my doctors office for each check up.
They gave me all this neat stuff for new care and then told me I had to wait 5-7 business days til I hear from a trainer to set up an appointment for training. Not only do I have to wait for the call, I have to wait for the appointment too and as my husband will tell you, I'm not exactly the most patient person.

Speaking of patience, one of the big reasons we need this new system is we've been ttc and apparently a cgms is now an awesome and almost vital tool for pregnant diabetics.
I've been prepping myself for all the planning and hard work I will have to do for when we get pregnant and then I got asked "oh no! You can't have a baby! Won't you give your baby diabetes too?". Thankfully, I was asked by the one of the few people I wouldn't go off on a tirade about how they know nothing about diabetes on. To answer his question though, no. While diabetes (type 1 juvenile onset) is linked to heredity, there is no evidence, after decades of diabetics having kids, that says, because you're a type 1 diabetic, your baby will be too. There is more medical advances than ever when it comes to diabetic pregnancy (wireless glucose monitor that tells you your blood sugar every 5 minutes), heck, they even have islet cell transplants!
I can't tell you how excited I am to be treading on this path with my husband and whatever work it takes, it will be worth it!

Been a while

I slacked off a bit here, but with good reason.  You see, in February, my husband started an amazing new job and it enabled us to get our own place.  So for the past 2 months or so, we've been settling into our new apartment and preparing things to be able to start our family.
While we're finally getting to a place where we're comfortable, I'm now dealing with insurance issues.
I have insurance, double insurance actually, Medicare and Qualified Medicare Beneficiary (which is actually medicaid secondary, it picks up what medicare doesn't), when I got married, changing my name with Medicare was simple, with QMB, not so much, you'd think they'd both be a bit difficult because of paperwork and redtape, but QMB also takes into account my income, my husband's income, etc.  Well the nurse at my endo's office refused to put the QMB claims through because my name hadn't been changed yet, so now, I'm getting bills for the last 6 months of the things Medicare didn't cover.  Now I know why people think it's a flawed system.
As for my diabetes, I've been having ups and downs.  My stress levels don't help much and my inability to control them don't either.
I know had been going into the past of my experiences, which I will continue in the next post, but I figured I need to catch up on what's been going on in my absence.
Until next time...

Malaise

I have to step out of the past for a day so my immune system can catch up.  You see, I've been having some issue with my blood sugars not being on track for the past week or so, and problems with lows since...well, for over a year.  I know there's the "dawn phenomena" which usually deals with why diabetics wake up with highs, but me, I usually wake up, either in the middle of the night, or morning with a low.

The last two or three times I saw my endocrinologist she suggested a specific kind of fasting glucose test.  One that involves me waking up every 2-3 hours in the middle of the night and not having a snack before bed, or eating until lunch time the next day.  My husband knew about this when I did, but still, neither of us were looking forward to it, in fact, we put it off as long as possible.
Then I had two lows yesterday, one that involved an inordinate amount of orange juice and graham crackers with peanut butter, the next, chocolate ice cream (I will say in my defense, yes, chocolate is not a good option for bring up your sugar, but ice cream on the other hand has sugar and lactose, so even with the chocolate, you're covered).

Now you'd think a low was a diabetics dream, you get to eat the foods you're generally supposed to limit, but no.  The feeling of the low definitely outweighs the joy of such foods.  For me at least, I'm weak to the point that movement isn't much of an option, lest I make the low worse (movement= exercise, exercise= lowers blood sugar).  There's also cold sweats and crazy hunger, irritability, dizziness, and shakiness, and trust me, I get all of them, together, at once.  When I first learned about lows (or as it is more scientifically known, hypoglycemia), I was taught the 15 in 15 rule, which states, 15 carbs every 15 minutes.  When you're first aware of the low, you're supposed to ingest 15 carbs, wait 15 minutes, then test again, if you're still low, you repeat.  I don't recall how well I did with this when I was younger, but I've come to the conclusion that my body has realized "Oh hey!  Orange juice!  You'll make me feel better! *glug glug*" and the glugging is definitely more than 15 carbs, plus there's the crazy hunger, which usually leads to crackers or some other carb laden starch, sometimes even candy.  I seek out whatever will make the feeling go away, and I usually wind up eating/drinking it, until it does.  What can I say, I'm not very patient and I have had the joy of waking up out of unconscious stupors caused by lows more than once and I'd rather not experience it again.

Oops, I sidetracked...aside from long term complications, I've experienced most of the bad parts of diabetes, mostly due to my own lack of knowledge, stupidity or just plain obstinacy,  so I'm of the mind that when there's something wrong, I will do what I can to fix it, sometimes with minimal doctor interference.
Last night, I finally started the testing and set myself up for every 3 hours instead of 2.

Apparently, this blood sugar roller coaster meant I was getting sick, and waking up every 3 hours in the middle of the night did not help my immune system any.  I'm now stuffy with a bad headache and praying it's just allergies.  I still plan to do another night of this so my doctor has the information she needs, but if I don't post for a few days, it wasn't allergies :P.

Poking myself.

While in the hospital, I was told that my release was dependent on one thing, learning to give myself shots.  I've always been a bit squeamish of needles, even now, I still can't watch them go into skin, unless it's my own.  Knowing your life is dependent on it kind of changes things a bit.
Learning to inject yourself with insulin takes some attention to detail, but after doing it for 16 years, it's become a second nature, so when trying to teach someone else, like my husband how to do it, I find myself frustrated if he doesn't get it right away, now I know how the doctor and nurses felt.

First, depending on the type of insulin you have, you may have to roll the bottle in between your hands, especially if it's a mix. (At the time, I was on Humilin 50/50, guess what kind of mix that is :P)

Next, you have to pull back an equal amount of air as the dosage of insulin you need to take into the syringe and put the air into the insulin bottle (trust me, this is imperative when you get down to the bottom of the bottle and the thing is so devoid of air that rather than allowing you to take insulin out, it becomes a vacuum).  After you get the air in, you can pull out the correct dosage and be ready to inject.

Here's the fun part: Since you have a finite dosage needed, you can't really practice on yourself.  You know what they give you to practice on?  An orange, because that resembles human skin and tissue.  I'm sure they've come up with something better in years following my diagnosis, but at the time, I got to jab a citrus fruit with a 30 gauge needle.

One of the things I remember because of how badly it frightened me, was what I liked to call "Diabetic scare tactics".  I remember the threat, that if I didn't take care of my diabetes, my foot, or leg would have to be cut off, or I'd go blind, or I'd need a new kidney.  Yes, I know, these are real threats, but as a child who just found out they're going to have to poke themselves with a needle and squeeze blood out of their fingers several times a day for the rest of their lives, I think you've got enough to deal with.
I don't think it's something they should hide from you, but the emphasis was just too much.  I remember if I wanted something with more than a normal amount of sugar in it, or if I forgot to test, that was the threat "Do you want to lose your leg/foot/go blind?"

Diabetics are human too.  I've learned even after 16 years, you're still going to have troubles with your blood sugar.  I have days where I try my damnedest to stay under control and nothing works.  It's not always my fault.  There are countless things that affect your blood sugar aside from, well, sugar.  Even the slightest amount of stress can throw you up above your normal range, I'm definitely living proof, just the other day I was upset, I tested and sure enough, I was above 200.

Another common misconception I'd like to dispel, and will bring up again as it is one of the main points I'd like to get across in this blog.  We CAN eat sugar.  We can have candy bars, cake, cookies and in some cases, even regular soda (16 years on diet coke has caused an aversion to this last one for me anyhow).
This doesn't mean you're a new diabetic and you can still go out and get that twix bar on your break.  What this means is that as part of a balanced diet, one we should actually all follow, not just diabetics, sugar can be integrated.  Back when I first started, I was actually put on a weight watchers diet.  At 80 lbs on a 5 foot frame, would seem a surprise and I'm not advocating weight watchers, but it was a diet incorporating all 5 food groups at moderate amounts.  That's really all it takes, moderation.

Why is the apple juice all gone?

Let me preface this with the fact that I am not looking for sympathy, this is not a sob story.  It's my account of growing up and through Type 1 diabetes and some of the adventures along the way.  Should you feel inclined, you can donate to the Juvenile Diabetes Research Foundation or American Diabetes Association.

Sometime in my childhood, I went from this:

to this:

I'm the blonde one feeding my face in the right hand corner.

In the summer of 1995, I went from the chubby little thing you see above to dropping 25 lbs with an appetite for apple juice that could fill a kiddie pool. I looked something like this:

Mind you, I'm 22 in this picture and it will get used again in a later blog to explain the lack of weight, but I was, to say the least, a stick.  My mother assumed it was puberty, but something about my discomfort in everyday life and the fact that I'd sneak into her bathroom 2 or 3 times in the middle of the night and drink water from the faucet just didn't seem right.  Once school started, things got worse.  

There was one week in September I will not soon forget, I went to school on a Monday, could not control my emotions to the point that I cried myself into a nurse's pass through homeroom and wound up going home, then staying there the next day.  Same thing happened Wednesday, I stayed home Thursday.  When the scene replayed itself on Friday, the nurse suggested I see my doctor.

I don't remember what made Dr. Gross (yes, my pediatrician's name was Dr. Gross) think "this sounds like diabetes!", but most of my behaviors over the past month or so must've been mentioned, because he took a blood test, mind you, without me having to drink the disgusting liquid and came back with positive results.  I vividly remember asking the doctor if I could have "one last donut", knowing there was a Dunkin Donuts on the way home and thinking this was the death sentence of my childhood and affinity for sugar, he obliged, but requested I go easy on the toppings.  My mother, the kind hearted woman she is, allowed the white frosted with sprinkles donut that had always been my favorite.

At 11, I didn't really understand the gravity of the situation, I don't think most children of Type 1 do until you're thrown into it all with the swarm of doctor's and medical supplies you are put in charge of.

I don't remember my Endocrinologist's name, I just remember I couldn't really understand a word he said, except for one sentence.  At my first appointment with him, he tested my blood sugar, when the reading came back as 565, his response was "She have to go to hospital, right away!"

St Therese Medical Center is where my education began.  I spent a week there and I remember most of the images shown to me so I'd understand just what happened to my body and how important it was for me to take care of everything meticulously.

My favorite was how insulin acted as a doorman to the cells.  It opened the door to the cell to allow glucose in to give you energy.  This isn't the same picture they used for me, but you get the idea:

I don't recall much of the other educational materials, except for one, the pink panther.  I was given a thick book thinking this was to be my diabetes bible and reference guide.  Nothing says serious autoimmune disease like a pink cat.

Next up...what would've kept me from leaving the hospital, diabetic scare tactics and my long, tumultuous relationship with Sweet N Low.