The Cost of Good Health

I am thankful every-single-day that I have good insurance (through my husband’s work.) But it still makes my jaw drop when I see the breakdown of what just 3 months worth of test strips, lancets, and insulin pump supplies cost:

SuppliesCostPic

That does not include insulin itself, or my CGM sensors, which I’m sure would add on more crazy $$. Suffice it to say, I feel confident that without insurance, I would be paying around $1,000- $2,000 per month for all of the prescriptions and supplies I need just to stay alive. Now, could I stay alive using only insulin and syringes, and not using all the fancy technology? Sure. But you’d better believe my *quality* of life would not be the same. Having my insulin pump and CGM have helped me really rein in my blood sugars, which we all know helps keep our bodies from getting worn out so soon from so many highs and lows all over the place. Am I perfect in my blood sugar management? Heck no. But with these tools, I’ve come a long way from when I was on Regular and NPH injections when I was first diagnosed in 1994. My A1Cs were never below 9 until I went on the insulin pump. Ever since, they have been 7 or below, and for several years now, hovering under 6.5. I’d like to keep it that way for as long as possible, and hope and pray I have good insurance and can afford all of my diabetes prescriptions and supplies for the rest of my life (or until they find a cure, right??)

To the Overweight Type 1 Diabetic Considering Weight Loss Surgery

Dear Type 1 with weight issues (like me),

I don’t know your history with diabetes or with your weight, but mine is something like this: I was always healthy and active as a kid, and even into my late teens and early 20s. I didn’t become diabetic until I was 21 years old and in college (after having been on Accutane for a year and also having my tonsils taken out. Did one of those things cause/trigger my diabetes?? The world may never know.) It was crazy and crappy. I initially lost, then gained, then lost weight right after diagnosis. But then I maintained a healthy weight for at least a decade. And then came my 30s. A sedentary job, years spent on birth control pills, and then getting married and having fertility issues (inject tons of stress, hormone shots, hormonal imbalances, you name it ) all led to a sharp incline in weight gain, and also a sharp incline in insulin resistance. With insulin resistance, I had to take more insulin. Taking more insulin, I gained more weight. Gaining more weight, I had to take more insulin. My endo basically told me I had become a Type 1 who also had Type 2 diabetes, and I was put on Metformin to help combat some of my insulin resistance. It helped, but didn’t fix the underlying issue. It was a vicious cycle that I couldn’t seem to break with any amount of dieting and exercising. I had all sorts of back pain, plantar fasciitis in my feet, and barely had enough energy to get through most days. I needed a dramatic change, and I needed it fast.  I was in my 40s, with a 3 year old child that could out-run me. How could I protect her if I couldn’t even protect myself anymore?

So, I did my research. Talked to other friends who had some type of bariatric surgery. Joined a couple of Facebook groups to talk about it. Searched and searched for other T1s who had the surgery, but came up short. I had decided against the more complex gastric bypass (where they reroute all sorts of things) and chose the sleeve (VSG) because it was easier to comprehend how my digestion would change post-surgery, the weight loss would be more gradual, and I felt I could manage my diabetes (and health) better in the long run with this surgery.

Now, I am almost 8 months out from surgery. I finally have energy and can eat (more or less) regular foods. I eat FAR less than ever, focus on eating my protein first, then keep to a minimum amount of carbs over the course of the day.  My goals each day are to eat at least 70g of lean protein, drink 64+ ounces of water, take all my various chewable vitamins and supplements (there are quite a few) and to keep sugar and fat intake around 5g at each meal/ eating time. In order to consume just what I need to consume, but not overfill my “sleeve” stomach, I have to eat several small meals – I am basically “snacking” all day long. I have lost 70 lbs total, and am currently in a “stall” so now I need to switch it up, exercise more, and really work to get the weight to come off. But get this: My insulin requirements went from over 100 units per day, down to about 50 units per day now (that’s meal boluses and basal rate combined.)  I no longer take Metformin. My A1c is sitting pretty & playing nice at 6.1. I’m down 2-3 sizes in most clothes. I can sit comfortably in those super-close stadium seats. I can chase after my daughter. I can play with her on the floor, and then stand up without groaning. My feet don’t hurt nearly as much any more. I’m ready to join the local swimming pool this summer and enjoy it with my family and friends. I *feel* better than I have in YEARS.

This has been a tough road, and it remains challenging. With diabetes, LIFE ITSELF is challenging – we know that. There are days when I have low blood sugars and shake my fist in the air that I am forced to go off my diet plan and eat when I don’t want to. There are days of unexplained highs that send me into a spiraling fatigue, just like before. Juggling exercise and blood sugars and my teeny stomach is even more challenging. Having a crashing low, cramming my face full of an apple and then having my stomach feel like it’s going to explode is NOT fun. But would I say this surgery was a success for me? Even though I still have at least 50-60 lbs left to lose? YES. Every time I will say YES.

But you – all the other overweight Type 1s out there with BMIs in the “morbidly obese” category like I was – you have to make the decision on your own. Every surgery comes with it’s risks and potential complications. For me, the results I’ve had so far, even though I’m not “at goal” have been SO worth it.

Happy to have my life back —

Before-AfterJan2015

Fun for the day = WordCloud

It’s been showing up in my friend’s Facebook feeds all day today, so thought I would share my WordCloud here:

A little about me...

I’m really not sure where/how they are getting these words out of my Facebook feed, because I swear this is a mish-mash between my personal account, and my account as 15wait15. It also does NOT include several of my most-used words, like my daughter’s name, diabetes (hello!?!) etc. Maybe it’s only for the last few days? I dunno. Anyways, you can try out your own (if you’re on Facebook) at: https://apps.facebook.com/my_wordcloud/

(I know, I know….I need to do a proper informative blog post soon and give another post-surgery update, but I am just too distracted with everything else right now. Lots of life going on! But good news, I’ve moved on to eating regular food now! Not without it’s challenges, but I’m surviving and doing well!)

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?

 

 

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. 

 

Quick Post-Surgery Update

I finally had gastric sleeve surgery (aka VSG) last week, and said goodbye forever to about 75-80% of my stomach.

Desperate times call for desperate measures (I think my next blog post should be called that) – I have TONS of material to share surrounding my surgery, hospitalization, and the recovery challenges so far) and having something like this done is no true “quick fix” to losing weight. It is a process, and a very tough one, especially when you add in Type 1 diabetes to the mix. Each day right now is an exercise in counting all the little victories. I WILL get there…..

Victory in a bottle!

See that empty bottle? THAT is my victory this morning. I drank *all 8 ounces* of that protein drink within the span of 3 hours as my breakfast. This is a GOOD thing – yesterday, it would have taken me at least 4 hours, or I would have given up and just started on the lunch one without finishing the breakfast one. My stomach is still swollen and inflamed from surgery, so it’s even smaller than it will eventually be once it’s settled down and healed completely. Getting in enough fluids each day, nutrition in the form of high protein shakes & drinks, and eating/taking all of my chew-able vitamins and minerals is yet another job on top of the other health-job I have in taking care of my diabetes. I wish I could tell you, “my blood sugars have been fantastic since the surgery!!!”….but they haven’t been fantastic. They are manageable, sort of, but running way higher on average than I like.  I have a whole new “normal” to get accustomed to, and so does my body and all it’s inter-working parts. I’m getting there, slowly but surely, and promise I will have an upcoming post on blood sugar management pre-, during, and post-surgery.

Another victory to note? NO blood sugar crashes, at least! Dealing with potential low blood sugars was one of my primary concerns around the surgery and recovery time, and so far, I haven’t had to scramble and test the limits of how-much-apple-juice-I-could-consume-how-fast to bring up a low, because I haven’t had any. Whew. Knock on wood, fingers crossed, and all that jazz.

The biggest challenge I am having right now is that I have ZERO energy. Mainly because, I’m lucky if I consume 500 calories per day. (MyFitnessPal keeps telling me I’m not consuming enough calories – like, I didn’t know that already??) I have some kind of protein drink, water, sugar-free popsicle, soup, sugar-free Jello, etc. in my hand all day long, and I literally just can’t consume more – my stomach says, “enough!” and I listen to it, or else pay the consequences in pain/burping, or potential vomiting. (Again, a victory I hope to maintain – no throwing up.)  I had my first post-surgery followup appointment yesterday, and my PA said I am doing great. I’m getting in a good amount of protein, and she says the calories and ability to consume what I need will come with a little more time – my stomach still has to heal.

And you know what? Here’s a pretty big victory. In the last 2 weeks, since I started on the pre-surgery all-liquid diet, I have lost almost 20 pounds. T-W-E-N-T-Y. It has not been an easy 20 pounds, but I am owning it, and it’s giving me even more motivation to keep on doing whatever I have to in order to use this tool of weight loss to make my life better and healthier. My stomach will never be the same again, and neither will I. I am committed, and I will do what I need to do in order to be healthy – for myself, and for everyone I love. And you know what I’m really looking forward to? Hiking long distances. Running and being carefree. Doing cartwheels with my daughter. So many things that I used to love to do, but couldn’t because of the weight. I WILL do them again, and soon!!!

 

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.