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

Bubbly High Sugars…the REAL Culprit??

A few days ago, I was waxing poetic about how I had these really odd overnight highs that seemed to be for no good reason. I sort of (but not really) thought they could be connected to bubbles in my insulin pump cartridge reservoir. Or they could have been because of any number of extraneous causes. With blood sugars and diabetes, just when you think you’ve figured something out, something else comes out of left field and wrecks your theory.

Well, now I have a NEW theory….a couple of months ago (around the time the night-time highs started), I decided to give my hips and upper butt pump site areas a break, and went back to using my stomach. I really hadn’t used my stomach for infusion set sites much since I was pregnant – the past 3 years have FLOWN by! – but it always worked fine before, so I didn’t even think twice about it.

Now, remember: the crazy unexplained highs I was getting were mainly while I slept. I sleep *on my stomach.* After I wrote that post the other day, I did a site change-out and moved back to using ye olde trusty hip zone. Voila!! My first night in a long time where I had no crazy high readings. The next night, the same. And the next. Seriously folks, we are on a roll now!

So…..could that be it? Could the weight I put on an infusion site overnight (because I sleep on it on my stomach)  have caused all those high sugars? Or maybe, uptake of the insulin was somehow lessened because I was sleeping on my stomach, right on top of the infusion set site? How many licks does it take to get to the Tootsie Roll center of a Tootsie Pop? For all of these questions, and more,  the world may never know….

I wish EVERY overnight and morning looked like this!

Since I moved my infusion set back to my hip, here’s what my overnights and mornings have looked like, for the most part.
I WILL TAKE IT, HAPPILY, regardless of what the reason may be!!

 

 

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!!

Goodbye, Site Change Trauma High Blood Sugars

It’s amazing how many years it took for me to make the connection between high blood sugars for no-good-reason and changing out my insulin pump infusion set site.

I guess coming off of multiple daily injections that just, you know, had the insulin working pretty much when I expected it to, I assumed the same would be true when I would unceremoniously jam a 9mm plastic cannula into my skin using a metal needle….my body shouldn’t put up a fuss about that, should it??

But somewhere along the way, I was reading a blog or swapping comments with another member of the DOC, and a light-bulb went off. Duh! After always wondering why I would give myself tons of insulin right after a site change and NOTHING seemed to budge my blood sugars, it all made sense. The skin/cells around that site were traumatized, and not absorbing insulin yet or doing what they should. Inevitably, a few hours later, I’d come to a crashing low-blood-sugar-screech because suddenly the site had calmed down, and the cells finally absorbed the copious amounts of insulin I’d been giving myself. Argh.

So I learned to try to do site changes at least a few hours before meals (if I could do it without wasting too much insulin), and to never ever do them before breakfast because I would be even more spikey after breakfast if I did. Our girl Katy made a comment/suggestion that I have FINALLY implemented, and it is working like a charm!

My belly isn't 2 shades of pasty, just a camera lighting issue.

New site on the left side, while I still have the old site on the right. I do cover the new site while I’m waiting for it to settle in.

It’s so simple: when I notice I’m within a few hours of needing an infusion set switch out, I insert a new set somewhere else, and just leave the port there ready for whenever I run out of insulin/am ready for the switchout. Sure, it means I have 2 sites on my belly or hips at the same time for a few hours, but so what? It saves me from at least 3-4 hours of wrecky-high blood sugars and feeling like poop. I’ll take that trade-off ANY day.

Now, as we all know, Your Diabetes May Vary. In talking with my d-girls the other night, who also have various brands of pumps and insulin delivery systems, some of them experience site change trauma, and some do not. So obviously, do what works for you!!

Never There

Never there…..kind of like the FDA not including diabetes in their series of patient meetings!!! Go sign the petition so we can have the FDA actually *be there* for us for a change!

I need your arms around me, I need to feel your touch
I need your understanding, I need your love so much
You tell me that you love me so, you tell me that you care
But when I need you baby, you’re never there

On the phone long, long distance
Always through such strong resistance
First you say you’re too busy (Too busy to meet with diabetics?  There’s 26 million Type 1 and Type 2’s in the US alone!)
I wonder if you even miss me

Never there
You’re never there
You’re never, ever, ever, ever there

A golden bird that flies away, a candles fickle flame
To think I held you yesterday, your love was just a game
A golden bird that flies away, a candles fickle flame
To think I held you yesterday, your love was just a game

You tell me that you love me so, you tell me that you care
But when I need you baby
Take the time to get to know me (FDA, get to know us!!!)
If you want me why can’t you just show me
We’re always on this roller coaster (Roller coaster of blood sugars, with test strip results we can’t completely trust….)
If you want me why can’t you get closer?

Never there
You’re never there
You’re never ever ever ever there
~Never There lyrics, by Cake (with some additional thoughts by yours truly.)

My Left Foot

Sunset over the Cape Fear RiverEating, drinking, and walking my way through Wilmington this past weekend with some friends was a fantastic and much-needed get-away trip, but I unfortunately paid the price in foot pain….

I have had chronic plantar fasciitis for going on 8 years.  It started soon after I injured my hip (story in itself, for another time) and favored one side while walking for many months, as well as stupidly wearing flip flops all that summer with no arch support. Once the pain in my heels started, it has hung around like an unwelcome guest with nowhere else to go, despite numerous courses of varied treatments. Weight gain hasn’t helped it, but I tend to blame diabetes most of all for it’s chronic condition since I feel like I have poor circulation and slow healing as a general rule, and that translates to never-ending-inflammation in my feet.

When it first started, it was very subtle…getting out of bed one morning, my right heel twinged and hurt, as if I had bruised it by stepping on a sharp rock or something. Then as the days and weeks progressed, it got worse and worse as I woke up, and if I went out walking/running/hiking or stood around for too long during the day, it would blow up into excruciating-limp-causing-pain by the evenings. The right foot was the worst, but the left was starting to show some similar symptoms.

My 1st podiatrist went from orthotics, a night splint, and NSAIDs straight to recommending cortisone shots. Yes, she knew I was diabetic and that it would wreck my sugars, but my wedding was coming up soon and I wanted some quick relief. I succumbed to the pressure, and got cortisone shots in both heels done about a month before my wedding. It was AMAZING. From a 10 level of pain to a 0 (but straight to an 11 level of difficulty getting my sugars to calm down and stay under 200 for at least a couple of weeks.) I was thrilled that I didn’t have to limp down the aisle on my wedding day, and that I was able to do some major hiking in Hawaii on our honeymoon.

Fast forward a few months….the benefits from the shots wore off. The pain returned, and just as excruciating as before. I decided to try the shots one more time…and that was a BAD idea. The day after I had the shots done, I had a reaction of some sort, and ended up with an emergency trip to the hospital while visiting friends in Virginia. The pain in my left foot and calf was so bad I could barely walk – my entire foot and lower leg felt like someone was jabbing me with an expansive collection and variety of Cutco knives. We won’t mention the awful blood sugars again, and the general feeling of crappiness that ensued. And it was after that reaction that suddenly my left foot became the problem extremity, while my right foot calmed down and behaved. I would daresay the left one is now worse than the right one ever was. Decision made: no more cortisone shots. Ever.

Over the years, I’ve just been dealing with it and tried all manner of treatments. I never go barefoot. I wear orthotics and shoes with good arch support (translation: no cute/fashionable/high heeled shoes.) Done physical therapy for months at a time. Gone to acupuncturists and chiropractors. Do daily stretching exercises and roll my foot over a frozen bottle of water. Have a personal TENS unit that I shock my foot with several times a week to get the nerves stimulated and the blood flowing. My wonderful husband gives me foot massages every night. (Yes, I KNOW how lucky I am!!) I have taken NSAIDs in the past, but swore off them for several years when we were trying to get pregnant, throughout pregnancy, etc. (By the way, the one time my feet felt superb and really gave me no problems in the last few years?? While pregnant! I think that relaxin hormone was miraculous. Can we please synthesize and market that for connective tissue pain relief? Also, didn’t realize until I looked it up on Wikipedia that it is related to insulin. Hmmmm??) I generally try to keep my drug intake to a minimum – the only things I take daily are insulin (of course), Metformin, multi-vitamins & probiotics, and on occasion, Zyrtec for allergies.No connection to the movie with the same name

Just went to my podiatrist, Dr. H. this morning (different from the cortisone-shot-debacle lady. I love Dr. H.), and discussed going back on NSAIDs. For now (but maybe forever, the jury is still out on that topic), no new babies are on the horizon, and I desperately need some relief so I can exercise and do more work getting my body into shape, as well as chase after my daughter on her scooter, bike, etc without tripping and crumbling from foot pain. Am a bit leery about the side effects/sugar effects of taking on a daily drug again, but I guess we’ll just have to see how it works, monitor sugar reactions while adding in this new variable, and test, test, test.