Charging Diabetes by the Hour

I wish I could charge my diabetes by the hour.

I want to charge it for every single minute that it has taken me away from something – away from enjoying my free time, away from my family, away from work, you name it.

It always seems like I see this:

Blasted downward arrow :-(

at the most inopportune moments. Like when:

  • I am about to call into a conference call/meeting for work, that I need to facilitate.
  • I am about to take a shower.
  • I need to get in the car and drive somewhere.
  • I have a boatload of emails to answer.
  • My daughter says, “Let’s go outside and play!”
  • My husband says, “We need to leave in 5 minutes.”
  • I am about to do anything that requires any amount of concentration or attention.

I see that downward arrow, and can almost hear the screeching-car-wheels sound….drop everything, do not pass Go, and deal with this NOW. Time drain in action. And let’s not even go into how much time it takes away for pump site changes, blood sugar checks, CGM changes, doctor and endocrinologist visits, lab work, blood sugar logs, food journals, guesstimating your carb counts, planning your day around eating and exercising, etc.

If I could charge diabetes by the hour…I wonder how much money I would have?
I am terrible at math, but let’s say I charge diabetes a mere $30 per hour for the undivided attention I have to give it. And for all the “stuff” that goes with having diabetes – doctor/medical visits, the finger sticks for blood sugar checks, the changing outs of various devices, the dealing with a low or feeling wiped out because of nagging highs – we’ll say my diabetes, on average, takes up 4 hours of my time each week (I feel this is a highly conservative estimate, but I have to start somewhere – as we know, diabetes is really a 24×7 job!)

4 hours x 52 weeks x 20 years = 4,160 hours of my life since I have had diabetes. At $30 per hour, that is $124,800!!

Oh, if I only could have that money to put into my retirement account, or pay off our home mortgage, or do something crazy fun with!! Diabetes….someday, I will find a way for you to pay up, if only by helping eradicate you from taking so much precious time away from me and from the rest of the D-world.

I thought you were supposed to “sleep” in a “sleep study?”

Last week, I had one of the worst nights of sleep I have had in a LONG time. As one of the many required doctor visits and tests I have to complete before I can be considered as a candidate for gastric sleeve surgery (which is also abbreviated as VSG for “vertical sleeve gastrectomy”), I had to complete a sleep study to determine if I have obstructive sleep apnea (OSA). OSA is apparently very common, and more common in people who are overweight. “They” say that if you have untreated OSA, it can actually *cause* weight gain, due to continually interrupted sleep, and also from not getting enough oxygen throughout the night.

Some background: I did a sleep study 2 years ago, when I was originally entertaining the idea of weight loss surgery. I got the heebie jeebies from the moment I entered the sleep center’s building at 9pm. The “technician” conducting my sleep study was a male, and smelled like smoke. I was ushered to a room with all sorts of machines and wires, and a very obvious camera pointing at the bed.  Long story short, that sleep center diagnosed me with “severe” sleep apnea and required me to use a CPAP machine.

Suffice it to say, the CPAP machine is NOT COOL. It sent me into a panic almost every time I put it on because it covered my nose and mouth, and basically shoots air into your mouth and nose all night long with varying pressures. That doesn’t make *getting* to sleep easy, much less *staying* asleep. The best way to keep the mask on was to sleep on my back. (I am a stomach sleeper, and sometimes a side-sleeper IF it doesn’t tear up my shoulder joint or make both my arms fall asleep. Which happens a lot, so we’ll just say I’m a stomach sleeper.) On my back made it difficult to fall asleep, and it made me wake up with all sorts of aches and pains no matter how many pillows I had surrounding me. Then, to add insult to injury, I got sinus infection after sinus infection when I would wear the CPAP machine on a regular basis. After a few months, I gave up. I didn’t feel like I was sleeping any better at all – in fact, I felt worse because I was sick with sinus issues all the time. And let’s not mention how tore-up my blood sugars were, due to continual sinus infections. Those were my worst A1C’s in that time frame than I had had in a LONG time.

When I went to the new bariatric surgeon and talked about it, I asked if I could please use a dental device for OSA treatment instead of the CPAP machine. That’s why he signed me up for yet another sleep study – hopefully to assess if I could use the dental device effectively to treat my OSA.

Once again, I went into the sleep study lab (a different one this time), and got the heebie jeebies. The man who was the technician was nice enough, but he was trying to make jokes that just weren’t funny. Like: “Feel free to change into your pajamas in the room, but I would suggest you go into the bathroom across the hall, unless you are an exhibitionist,” and he nodded up at the camera pointed towards the bed. Ewwww.2014-01-16_SleepStudy01

The bed was the most uncomfortable-looking thing I have seen in a while. The technician gave me the 6 pillows I requested, hooked me up to a boat-load of wires and things on my head, face, chest, legs, and also to a pulse ox finger monitor. I was not allowed to bring my own pillow, blankets, or sleep on my stomach. I just don’t get it – how are they supposed to truly “study” how you sleep, if they don’t let you actually sleep the way you normally do??? On top of all that uncomfortable-ness, you know someone is watching you all night. It totally creeped me out.I always feel like somebody's watching me....

I was finally left to my own devices around 10:30pm, alone in my room, so I called my husband to say goodnight, and read some of my book club book (Firefly Lane – a good beach read/chick lit/ tear jerker.) The nightstand – that I could barely reach with all the wires attached to me from the OTHER side of the bed – held my phone, my CGM, my finger-stick meter case, a juice box, and a granola bar for just-in-case. I was running a smidge on the high blood sugar side (130-140s), but I really think half of it was due to my emotional state. I was so stressed out about this whole deal, it was 11:30pm by the time I turned the lights off. Then I laid in bed for an hour. Then I pulled off the pulse ox monitor to signal to the technician to come in my room (I had to go to the bathroom.) He came in, unhooked me, I carried along the 8 billion set of wires with me to the restroom, came back, he hooked me back up, and it was off to try to sleep again. I think I laid in bed for yet another hour trying to wind down, but all I could hear was the roaring freight-train-snoring-guy in the room next to me. Seriously, it’s a SLEEP LAB – shouldn’t the rooms be a little more sound proof?

At 4am I woke up and needed to change positions, but couldn’t because the wire from the pulse ox monitor wouldn’t reach, so I signaled the technician again, he came in and changed it, and I said, “Can this be over yet?” And he replied, “No, we still need about 45 minutes worth of data.” Grrrr.

6am finally arrived, the technician came in to wake me up and I got dressed and hauled it out of there as soon as I could. Ironically, I was wide awake, even though I despise getting up at 6am and was running on minimal sleep. Since I was already on that side of town, and hadn’t eaten since 9pm the night before, I stopped by the hospital where I needed to go at some point anyway to get fasting bloodwork done, with orders in hand from my bariatric surgeon. Their lab opened at 7am, and a very nice phlebotomist lady ended up letting me in early at 6:30am so I didn’t even have to wait very long. Even though it was the worst night of non-sleep and I was running on empty the whole next day, I got two things checked off my huge list of stuff-to-get-done-before-I-can-even-do-this-surgery. Win!

Don’t Buy This

Whatever you do, don’t buy this stuff!!

Whip it goodI saw this in the grocery store and thought, huh – I should eat more protein and fat in the form of peanut butter, and need a little something different to eat with crackers when I need a tide-me-over snack and looky! (It probably didn’t help that I was shopping with a bordering-on-low-blood-sugar. That never helps with making smart buying choices.)

This stuff is *whipped* and  even has a smidgeon of chocolate in it. Perfect for when you just need a teeny bit of sugary goodness, and don’t want to go overboard on something that is more of a no-no.

One taste and I was hooked. The serving size is 2 tablespoons. Good luck ONLY having that amount on your crackers, strawberries, pretzel sticks, banana sandwich, etc. It was all I could do not to empty half the container at it’s first opening.

MmmmFor those curious, there is the nutrition information. Not the absolute *worst* thing in the world for you (but the calories….WAY TOO MANY CALORIES.) To be safe, just don’t buy it. You’ll thank me for this recommendation later.

Lots and Lots and Lots of Stuff

OhTheHugeManatee

(Not sure where the credit goes for the image, since it’s been all over the internet. It makes me giggle every time I see it.)

I thought the amount of doctor appointments and lab visits was bad when I was pregnant….with the illustrious trifecta of being a high risk pregnancy, a female of “advanced maternal age,” and having type 1 diabetes, I swear I was at a doctor’s office of some sort every week. Twice a week, there near the end of pregnancy.

But this whole working-towards-having-gastric-sleeve-surgery schedule of events, paperwork to fill out, appointments, and lab-work that I just put on my calendar looks even more daunting. Within 1 month, I will have had 8 different appointments for things related to the potential surgery (on top of my usual appointments like: weekly Chiropractor visits, 6 month checkup with my podiatrist, hair cut and color – oh wait, the hair cut isn’t of medical concern. But it does soak up time! Anyway.) I have created a spreadsheet just to keep track, on top of adding all the appointments to my Google calendar.

Here’s the list, starting at the very beginning, just for fun:

  1. Required Intro Seminar about the various surgeries
  2. New patient consult with the surgeon
  3. Sleep study (to determine if you have obstructive sleep apnea, aren’t getting enough oxygen at night, etc)
  4. Fasting lab-work that includes tests:  CBC w/ Diff, Comprehensive metabolic panel, Ferritin, Folate level, Hemoglobin A1c, Lipid panel, Thiamin WB, Thyroid Stimulating Hormone, Vitamin D (25 OH-D2 + D3), Vitamin B12
  5. Consult with Gastroenterologist (I believe to have tests done to determine if my GI tract is OK for surgery, more questions/info on that later.)
  6. Group Nutrition Counseling class (through the surgeon’s practice, one of several to come.)
  7. Meeting and testing with Psychologist for psychiatric evaluation. Gotta make sure my head is in the right place for all this.
  8. Follow-up with surgeon after all the above has been done to go over results and next steps.

For each of these appointments/meetings, I have varying amounts of paperwork each of them wants me to fill out for them. Pages and pages of it. Paperwork on PAPER. Do you know how horrible my handwriting is? More importantly, do THEY know? There’s a reason why I type almost every correspondence – I want you to be able to read it. Tonight I am having the sleep study done, and need to fill out about 10 pages of a questionnaire, on top of listing all my medications/vitamins taken and their dosages. I’m going ahead and creating a spreadsheet of all that kind of stuff just so I’ll have it on hand to print out and include for all of these doctor’s appointments.

Oh, the humanity. (Get it, “huge manatee?” 🙂 ) Just like I have to pick myself up by the diabetic bootstraps sometimes, and give myself the pep-talk when I feel overwhelmingly weighed down by the 24/7 management of it all…. I keep telling myself: It will all be worth it.

Shake It Out

Driving home from dropping my daughter off at preschool, “Shake It Out” came on the radio. I got home, sat in my car in the garage, cranked up the volume, and sang along with it as loud as I could. What’s up with the radio universe always playing the song that completely fits your emotional state right when you need it? (Kind of like when you would break up with someone, all you would hear on the radio were love songs/breaking up songs. Geesh.)

I am about to make a huge change in my life after years of feeling I was in a dark place of helplessness that I could never get out of with my weight. “It’s always darkest before the dawn.” I’ll admit, there was some emotional crying going on as I was singing, too. The words don’t fit perfectly, but they are pretty close. I’m more than ready to shake off that devil, and dance for the rest of my life.

(And thank you all for the very kind words, comments, and offers of support to my post yesterday. I’m still a little nervous about sharing all this, but if it can help me work through this journey as well as possibly helping someone else in the future, it will all be worth it.)

“Shake It Out” ~ by Florence + The Machines

Regrets collect like old friends
Here to relive your darkest moments
I can see no way, I can see no way
And all of the ghouls come out to play

And every demon wants his pound of flesh
But I like to keep some things to myself
I like to keep my issues drawn
It’s always darkest before the dawn

And I’ve been a fool and I’ve been blind
I can never leave the past behind
I can see no way, I can see no way
I’m always dragging that horse around

Our love is pastured, such a mournful sound
Tonight I’m gonna bury that horse in the ground
So I like to keep my issues drawn
But it’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh whoa
Shake it out, shake it out, shake it out, shake it out, ooh whoa
And it’s hard to dance with a devil on your back
So shake him off, oh whoa

And I am done with my graceless heart
So tonight I’m gonna cut it out and then restart
‘Cause I like to keep my issues drawn
It’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh whoa
Shake it out, shake it out, shake it out, shake it out, ooh whoa
And it’s hard to dance with a devil on your back
So shake him off, oh whoa

And it’s hard to dance with a devil on your back
And given half the chance would I take any of it back
It’s a fine romance but it’s left me so undone
It’s always darkest before the dawn

And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my road
And I’m ready to suffer and I’m ready to hope
It’s a shot in the dark aimed right at my throat
‘Cause looking for heaven, found the devil in me
Looking for heaven, found the devil in me
Well what the hell I’m gonna let it happen to me, yeah

Shake it out, shake it out, shake it out, shake it out, ooh whoa
Shake it out, shake it out, shake it out, shake it out, ooh whoa
And it’s hard to dance with a devil on your back
So shake him off, oh whoa

Commitment Issues (also known as, My Big 2014 Commitment to Change)

I have dubbed 2014 to be the “Year of Commitment to Change.” Because, really, I’ve always had some sort of commitment issues. Not with my relationship with my husband or my friends or family, but with myself.

Years ago, I (albeit grudgingly, because I was diagnosed at 21, which should have be the height of “fun” time for me in college) made a commitment to myself to take care of my diabetes. When I was diagnosed, my doctor basically said there are 2 types of people with diabetes: those who live with it, and those who die from it.
I chose to be part of the former, and have taken numerous steps and changed my lifestyle dramatically over the past 19 years to make sure I was going to live, and live healthy, for as long as I possibly could. I’ve worked diligently to learn how to count carbs, take the right amounts of insulin, discover settings on my pump that help me avoid post-prandial spikes, acquired a CGM – the list goes on and on.

I go to my regular 3 month endocrinologist appointments like clockwork. I get my labwork reports. Everything looks pretty darn good, like it has for many years. My HbA1c is 6.1, and has been hanging out in the 6’s ever since I went on the pump in 2003. When I was pregnant, it even dipped into the 5’s.

At my last appointment, my endo and I had one of the most serious conversations we’ve had in years (the last one being in 2008, which was the “I’m trying to get pregnant” one, and I was reduced to tears because I felt it was never going to happen. But it did.) Our new-and-serious conversation revolved around my weight, which has steadily gone up since I was diagnosed with Type 1. I was a healthy weight back then at 21, I was an avid hiker, and loved to exercise. Fast forward almost 20 years…..a sedentary job, maturing into my 30s (and now, 40s), a bout of depression,  the roller coaster of hormones when trying to get pregnant, and then the pregnancy itself have helped me put on so much weight, I am now categorized as “morbidly obese.” Just saying that makes me cry.  I have explored the gamut of diets, exercise, changed how I eat, and definitely lost some weight along the way, but never enough to get down to a weight where my feet don’t constantly hurt, where I can sleep well at night, where I have enough energy to play with my daughter for hours, or where I can take up an exercise regimen without hurting myself in some way and losing track. I’ve been stuck in a rut of metabolic syndrome that has made gaining weight, despite my best diet-and-exercise efforts, far easier than losing weight. It’s discouraging, and my body is so very tired of constantly fighting some kind of pain from carrying around all this extra weight.

The me I want to be, again

A New Year’s picture of me, when I was at a healthy, manageable weight – before type 1 diabetes and metabolic syndrome had set in.
I want to be this again.

My endo says, “You are healthy, except for your weight. The medical issues, pains, etc that you have all revolve around your weight. Have you ever thought of having bariatric surgery? I wouldn’t recommend it for most of my type 1 patients. But you….I think you can do it. And I think you’ll see that as a tool, it will help you get to a place where you can manage your weight once again, and not get sucked back into the metabolic syndrome.”  For some background…my endo is a Type 2 himself. He had gastric sleeve surgery 1 year ago. I’ve seen the change in him – he looks, and tells me most importantly, he *feels* AMAZING now. He told me that he would refer me to his surgeon, he would go to the pre-op and post-op support meetings with me, and we could even do group personal training sessions with his personal trainer. He is on board to help and support me, which helps calm *some* of my fears about having an elective weight loss surgery as a Type 1 diabetic.

So….here comes the commitment part. If I want to do this, it’s going to require a LOT of commitment to changing, well, just about everything. I have to commit to a LOT more doctor visits over the next year. I have to commit to going to support group meetings. I have to commit to learning about how nutrition and digestion will change with the surgery. I have to commit to a non-impact exercise routine (to save me from injuries and so much foot pain) and know I will deal with blood sugar fluctuations as a result.  I have to commit to overhauling my diet and changing the way I consume food and drink. My diabetes management, that I’ve spent so much time perfecting, will drastically change – both before, and certainly after the surgery.

I have already tried to track down other Type 1’s who have had gastric sleeve surgery to ask them how they have managed, and if they have had any major complications or issues.  I have yet to find any. I feel like I’m navigating un-chartered territory here, and it’s scary. But, I’m even more scared of what my life will look like (or, if I will even be alive/healthy) in 20+ years if I can’t get rid of this extra, exhausting-and-debilitating weight. I’m sure there will be people in the DOC who are going to frown upon this choice I’m making…who think I *should* be able to lose 125+ pounds just by diet and exercise alone. Unless you have been THIS weight that I am, and struggled with all my injuries and aches, you have no idea how daunting it is, or how excruciatingly  painful. I need a dramatic change, I need it soon, and this is what I am going to do.

My first steps:

1. I am owning up to this commitment I am making – to take a risk that will change my life and my health for the better.

2. I am sending out feelers everywhere I know to find other Type 1s who have had gastric sleeve surgery. I’ve posted to a few bariatric surgery pages already, and found plenty of Type 2’s who have done it, but not a single Type 1. I’m hoping the DOC can reach out it’s arms and find someone within it’s ranks who has done this as a Type 1 and is willing to chat with me about it.

3. I’ve had my 1st consultation with the surgeon, and have scheduled nutrition counseling and a sleep study. Still to come: psychological evaluations, support group meetings, and various other tests and examinations to make sure my body is a good candidate for gastric sleeve surgery.

Even if I end up on this journey not knowing or being in contact with anyone else who’s done it that’s “like me,” I can at least document what’s going on through my blog, and I hope it will help someone else in the future. Wish me luck & strength, folks, and here’s to a Happy New Year for all of us!!