Still Here

I’m still here…but just haven’t been in the mood to blog in quite a while. I read copious amounts of posts from other bloggers, I comment every now and then, but somewhere along the way, I’ve lost my own drive to speak out and let the entire world hear my voice through my blog. I’ve kind of gone “introvert” in my own way…I really only reach out and communicate (usually via Facebook) and advocate to my friends and family there. Over the past few months I’ve received several “friend” requests from people in the D-community….I’ve declined them all – not because I don’t want to know them, but because I *don’t* know them. My personal Facebook page is just that – personal. No offense, but I don’t want to open that up to a world of people I don’t know, even if we do all share diabetes in common.

I’ve been super busy living life to the fullest (I mean, that’s the REAL goal of all of us, right?), and working on my health. I have so many aches and pains, so many tweaks here and there to deal with, on top of the ever-present diabetes….I feel like I’m going to some sort of doctor every other week. Or more.

BUT, I haven’t let it get me down, and I have had a LOT of fun this year! I went on several vacations, including a Caribbean cruise with an awesome d-friend, and my first-ever trip to Disney World with my family. It was truly magical – I can’t say that enough. And you know what was especially awesome about that vacation? I rode ALL the rides I wanted to, and wasn’t the least bit self-conscious about my weight. (Thank you, gastric sleeve surgery!)

I feel like I have not been advocating *enough* about diabetes, but I have been participating in a personal way with my friends and family, teaching them in bits and pieces about what it’s like to live with diabetes, and posting informative things regarding Diabetes Awareness month. I guess this post itself can now count as my contribution to that this November, eh? One thing I am VERY much looking forward to that is D-related is the Diabetes UnConference coming up in March 2016 in Las Vegas (there’s also one in Atlantic City in September, but not sure yet if I can attend that one.) It was such an amazing experience in it’s first iteration this year, that I can’t wait to see what it will be like in March!

Just know this: you may not hear from me much anymore, if at all, but I’m still here. And, as long as I can take care of myself in the best ways I know how, I’ll be here for many, many happy and healthy years to come.

LiveLife

Medical History? Say What?

I’ve gotten pretty lax over the years at asking my various doctors about seeing my records. Not just for lab work, but with their notes, commentary, etc from various visits. After my follow-up visit with my bariatric surgeon, I think I need to start checking up on them again….

The surgeon’s office just implemented some nifty electronic patient records system called “Epic,” so now I get these pretty detailed print outs at the end of each visit. Here’s an excerpt from the one I got from yesterday:

Say what?

 

Line by line, I have my own commentary for this list of my supposed “Current Health Issues”:

  • Unknown cause of morbidity or mortality = whose morbidity or mortality? Wait, are they saying I’m a mortal, and they don’t know what caused that? Say what?
  • Family history of breast cancer = true.
  • Type 2 diabetes = really? You put this BEFORE my Type 1 diabetes?
  • Female infertility = oh, so true 😦
  • High Blood Pressure = absolutely FALSE. I distinctly remember telling them that the only time I EVER had high blood pressure was when I was pregnant, and only in the last 3 weeks before I had my daughter. That is not “current” by a stretch.
  • Low back pain = true.
  • Generalized muscle weakness = um, sure, I guess? I said I was exhausted and tired all the time right now (mayhap because I’m not able to consume more than 600-700 calories per day and I’m not getting quite enough nutrients yet??)
  • Polycystic ovaries = true.
  • Blood clot in leg = FALSE. I have no clue where this came from. I have never had any blood clots, but perhaps this partially explains why they gave me 2 doses of Lovenox after my surgery?
  • Severe obesity = painfully true, hence, the sleeve surgery.
  • Family history of prostate cancer = FALSE. I told them my birthfather had some sort of testicular cancer at one point, so I’m not sure how that translates to prostate cancer.
  • Type 1 diabetes = true, ding ding ding, you’re a winner and got this one right!

Getting 7-8 out of 12 right isn’t bad….???? They at least have about a 60% chance of treating me properly, right?

 

 

E…a…t…i…n…g………S…l…o…w…l…y

I’m still alive! One month now post-gastric sleeve surgery, and I’m taking it day-by-day, meal by meal, ounce by ounce. I keep thinking back to all my fears with blood sugars and blood sugar management around this whole “changing my digestive system from what I knew before,” and now I can’t understand why I was so worried about lows. Honestly, lows have NOT been an issue. I’ve had the occasional, “Oh crap, my Dexcom shows 70 and a down arrow!” but I would take a few sips (literally) of a juice box, and things leveled out almost immediately.

One of the most interesting things about my “new” stomach that is taking some getting used to….food/drink hitting my system literally seconds after I consume it. I spent years figuring out when and how to take my insulin in order to have it be most effective at the time when my food would be digesting. I used square wave and dual wave boluses on my pump like it was my job (well, because diabetes IS like another job, after all.) I rarely pre-bolused before meals…I would wait until right before I ate, and then take insulin in a manner befitting what kind of food I was eating. You know, like for pizza – you take some, square or dual wave some over the next 2-3 hours, then take some more a little later, still go high, correct a bit, and then hope and pray you don’t over-correct. Stuff like that. That system and way of insulin-taking? Gone.

Now, I have to think ahead once again…take little bits of insulin (depending on what I plan to eat or drink) a good 15-20 minutes ahead of time. And I CAN’T forget to eat. I need all the nutrition I can get, and don’t want to waste an eating opportunity on scarfing down a juice box. Because, even though before this surgery, I planned my entire day around eating/insulin/exercise/diabetes, I STILL have to do that now, only adding in the caveat that my stomach will-not-allow me to consume more than a small amount of anything at a time. I get a full feeling very quickly. I cannot really “scarf” down semi-solid foods (I’m still in the pureed stage right now, so things like runny scrambled eggs are a staple.) If I try to take several bites one after the other, it feels like it gets “stuck” somewhere in my upper chest, and is VERY uncomfortable. The other morning, I was in a hurry, and ate my eggs too fast. Big mistake. I saw those eggs again very quickly when I vomited. Lesson learned, but still hard to adhere to.

Eggs and decaf coffee, breakfast of champions

Decaf coffee with Stevia & a little protein powder added into it, and a serving of an egg/egg substitute mixture with a smidge of bacon salt in them. I have to drink my coffee either 30 minutes before or 30 minutes after I eat the eggs. And I’m LUCKY if I can eat as much of the eggs as you see in this picture.

This is my biggest challenge at present: Eating slowly. I know I have to, I know it’s better for me, I know it will help me feel fuller longer (and also cue in faster to when my new stomach is getting full)…..but for years, I’ve been a “get the food in while it’s hot and while you can because your kid is going to need something soon, and then you won’t eat and then your sugar will crash, and then….” kind of person. That habit is really hard to break. But like a lot of things in life now, I’m working on it!

Gastric Sleeve Surgery and Blood Sugars

I’ve had a handful of surgeries in the past 20 years since being diagnosed with Type 1 diabetes, and there are a few tips and tricks I’ve learned that have helped immensely:

  1. I want to be the FIRST surgery of the morning. Since you’re supposed to stop eating/drinking anything at midnight the night before, it’s much easier to manage blood sugars for a short amount of time in the morning before a surgery rather than attempt to manage sugars all day on an empty stomach, risk potential lows you might have to treat with food/drink, thus negating the whole not-eating-after-midnight thing.
  2. Better to risk running high than running low. The night before surgery, I usually cut back my basal rate to about half of what it normally is. I don’t do any corrections for high blood sugar unless it starts running over 200. Then, I very conservatively correct – again, give myself about half of what I normally would to correct it.
  3. FILL OUT PAPERWORK ahead of time that says YOU take responsibility as soon as possible after surgery for your own diabetes/insulin/blood sugar management. No nurse or doctor knows how to work my insulin pump and CGM better than I do, and I had no desire to go back to getting injections at the whim and on the time-frame of nurses who don’t understand MY diabetes.
  4. Take at least 1 brightly colored piece of paper with you that states you are type 1 and notes your management regimen. For example, mine said, “TYPE 1 DIABETIC, on Insulin Pump and Continuous Glucose Monitor (CGM.) Please NO acetaminophen – it disrupts my CGM.”  This worked very well for me during this stay – had several nurses comment that it was very helpful for them to see that in my chart and know it immediately when they were treating me. (It also led to several educational moments where nurses had never seen a CGM before, so of course, I showed them and explained the whole she-bang.)
  5. Ask if it’s OK for that surgery to keep on your insulin pump port-site, and/or your CGM sensor. For my c-section, my OB preferred I didn’t have anything foreign on my skin or body, but for this surgery (since it was obviously way higher up on my torso), every nurse, doctor, and anesthesiologist I talked to said I could keep them on.

Now, onto gastric sleeve surgery …..that morning of surgery, I kept my pump hooked up  – running on 1/2 my usual basal rate – and also kept my CGM sensor on and the receiver with me until the very last minute when they were going to wheel me back to the operating room. Then, I relinquished my pump and CGM receiver to my husband for safe-keeping.

IV, Pump, and CGM, oh my!

I was running in the 180s right before surgery, which was perfectly fine with everyone involved.
Immediately post-surgery in recovery, I have no idea what my blood sugars were there – I was just trying to get reoriented and awake from anesthesia, and make sure they gave me some more pain meds. Thankfully, they got enough pain meds into me fast enough so I wasn’t very uncomfortable for long. Waking up from a surgery – always surreal for me.

Once I was in my own room and my husband gave me back my CGM and pump, I fingerstick tested (just to calibrate the CGM for good measure), and I was somewhere around 270. I knew I wouldn’t be eating or drinking anything for the rest of the day, so I wanted to be very careful about correction bolusing. I gave myself about 1/2 of what I thought I needed to bring it down to 150. Waited a couple hours. I had a decently steady downward-heading arrow on the Dexcom, so I just kept doing little correction boluses until I got down to 150, then I stopped.

Amazingly, for the next 24 hours, I had steady and decent blood sugars. Of course, I consumed literally NOTHING on the day of surgery – not even a sip of water (thank goodness I was on IV fluids, but my mouth felt like a desert.) And the following day, I could start on clear liquids, but that meant broth, water, sugar-free lemonade, and the like that had zero carbs and minimal calories. You can see my Dexcom graphs below, but it doesn’t show what I was doing with my insulin and boluses. Short answer = I kept my basal rate at close to 1/2 of what it used to be (for me, that is 1 unit per hour), and made only teeny tiny correction boluses here and there (of like, 0.5 unit)  if my sugar started sneaking upwards.

Day of surgery graph

Day of surgery blood glucose graph, from 12 midnight to 12 midnight. NO food or drink.

Day after surgery graph

Day after surgery blood glucose graph – on clear liquids only.

Now, the 3rd day after surgery, I was allowed to start on “full” liquids again, which meant the nasty protein shakes, 1% milk, sugar-free Jello, chicken broth, sugar-free Popsicles, and all that sort of stuff.
That is when blood sugar management got….interesting. The second I had a protein shake that morning with milk in it, my blood sugar RACED up to the  mid-200s. Seriously, it was like dawn phenomenon, the breakfast spike, and who knows what else all came into play at once.  You know how many carbs were in that shake? Like, a measly 13g. And the spike happened after I’d taken only maybe 2 or 3 sips, so I’d be surprised if I had consumed 1g of carbs at that point.

Spikey spikey

On full liquids, “breakfast” spike and subsequent calm-down over the course of each day. My graphs looked like this for several days, until I let the Metformin kick in again AND started bolusing at least a little something well-before I started sipping on my breakfast.

  • Note: I had not returned to taking my Metformin, but decided to start back after a couple of days of these spikes. Realization? My insulin-resistance wouldn’t just suddenly disappear after surgery, it would take time to lose some weight and hopefully get it down that way.
  • Another note: On all liquids, whatever I intake now hits my system *almost immediately*, and I had gotten into the habit of bolusing right when I eat, using dual-wave boluses, etc. Nope, NOW I need to bolus well *ahead* of eating/drinking, so that the insulin has some time to get into my system before I consume something that takes zero time to digest.
  • Crap, one more note: I waited a couple days post-surgery before I reset my basals back to the rates they were before surgery. With the weird spikey spikey happening, I guessed (correctly) that I needed a higher basal rate back again, regardless.

I hope this is all making some sort of sense. Today, I’ve actually had a pretty decent blood sugar day, and my spike this morning was not nearly as bad! I am hoping I’ve turned a corner in understanding how fast my stomach is digesting things now, and can take insulin accordingly/ahead of time to help stave off that spike. BUT, I know things will be changing in the weeks to come as I introduce “regular” food back into my diet. For reference, here is the upcoming schedule of how I am working up to eating regular food again while my stomach heals from surgery:

Bariatric diet stages post-surgery

It’s going to be a wild ride on the roller coaster of blood sugars, I’m sure! 🙂

Even more notes: I am NOT a doctor or medical professional of any kind, and am just sharing my personal experience. Individual bodies are different, and just because this is how MY body is working as a Type 1 post-surgery for gastric sleeve, it doesn’t mean that everyone else’s will work this exact same way! Your Diabetes May Vary. 

 

3 Days In

In preparation for surgery (and the life I’ll have for several weeks after), I’ve survived 3 days of a mostly all-liquid diet. I am allowed to eat a couple of sugar-free Jello gelatin cups per day & sugar-free popsicles, and then the one true thing I can chew on is a special protein bar I can have 1 time per day, so I’ve been saving that as my “special treat” at night after my dinner shake. I thought it would be the best thing to do in order to help my sugars even out overnight, hopefully not allowing any weird crashes, and to also help stave off any possible over-the-top dawn phenomenon. The jury is still out on whether or not nighttime is the best time to have this so-called treat, that kind of tastes like flavored cardboard.

My Fitness Pal.

My Fitness Pal display of Nutrition for the day. Not too shabby.

A few notes and observations about this dramatic change in my eating habits:

  • I started using the My Fitness Pal app on my phone again to track what I’m eating, and assure I’m staying within the guidelines of calories, proteins, carbs, etc. I really like how it syncs up and works in tandem with my FitBit Flex. (Note: I am also taking a slew of special chewable bariatric vitamins – a multivitamin, Calcium, B12, a probiotic and iron. I will take these the rest of my life.)
  • In getting back into logging food and such, I realized I’ve gone from consuming between 100-150 carbs per day down to around 45-60 carbs per day these last 3 days. No wonder I could barely drag myself out of bed this morning.
  • I have not been exercising, and while I feel bad about that, I’d rather NOT exercise and NOT crash than to have to fall off the wagon and consume too much sugar trying to bring up a low blood sugar. The point of this liquid and reduced carb diet before surgery is to help my body go into ketosis (NOT ketoacidosis), and burn off some of the fat surrounding my liver so that laproscopic surgery on my stomach will be easier. Also, in preparation for having a similar low carb/higher protein diet post-surgery as well.
  • I miss coffee. I mean, I’ve been drinking some decaf here and there, but it’s just not the same. One day, in the far distant future, I’ll be able to drink it again, but only in small amounts. You don’t want caffeine to make you dehydrated, or interfere with vitamin/nutrient uptake.
  • Blood sugars have been…..weird. You’d think with the greatly reduced amount of carbs (and the ones I’m having aren’t the spikey ones) that I’d have perfectly straight Dexcom lines within range. NOT. After my morning shake breakfast, I will slowly creep up to the 150-180s, and stay there almost all day. When I eat lunch, and then dinner shakes, my sugars will briefly go down,
    FitBit Flex display

    The lack of exercise pains me, but check out the calories in versus out. I certainly should lose SOME weight before surgery, at this rate, assuming my body doesn’t go into starvation mode and shut down my metabolism.

    and might hang out in the 120s or 130s. Except for the 1st night on this diet (where I had a low in the 50s that I treated with 1 cup of 1% Lactaid milk. It barely kept me within the required amounts of sugar for the day), my overnight sugars have all been within range, 90-120 or so. Now, as this week wears on, maybe my body gets more “used” to it and will level things out? I’m afraid to change my basal rates on the pump, because I really think they are not the issue – I think it is my liver getting all riled up at not having as much sugar coming around, it thinks I’m starving (which, I do feel like that, occasionally), and it wants to spit out some to make itself feel better. Stupid liver.

While NOT getting to eat foods and things I’m used to eating is really, REALLY, tough sometimes (I almost swiped my daughter’s sausage out of her hand this morning. It smelled SO GOOD) I am OK. I just keep thinking of the end goal – losing weight, being healthier, and feeling better – and I can turn my head away, and go eat my sugar-free Jello gelatin in relative comfort. This is my new normal, at least for a few weeks. Once I am able to consume “normal” foods again post-surgery, I’m sure it will be a whole new ball game.

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!

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.