Three Cheers for Acarbose!

I went to see the endocrinologist about a month ago.  I had been to see him in 2010 when I started having issues with my low blood sugar.  It was a bad situation.  I’d be out and about and without warning, down it would go to where I couldn’t even see.  I had no idea how low it really was until 2011 when I had a seizure the first night of Hanukkah in Jerusalem on the 4A bus.

In Israel I was tested and finally given the drug acarbose.  I really felt it changed my life.  No more of those wild lows where I felt like I was on some weird psychadelic trip with my vision cutting out on me.  No more seizures.  No more worries of being alone out in public.

But then I came back to the US.  And I had to get new doctors and scripts for my meds and this proved to be a huge problem.

I ran into a nurse practioner who refused to give me the meds I needed even though I had all of my prescription boxes with the labels attached.  Instead she turned me into the Department of Transportation for 1) having seizures, 2) having hypoglycaemia and 3) taking medication that could impair my ability to drive  (that also doubles for someone who is addicted to drugs).  If she had just listened to me, maybe I’d still be driving.  In the meantime I was back to the wild psychadelic trips and became very agoraphobic because I am always afraid I’ll have a low and a subsequent seizure when I am away from the safety of home.

Well, anyway, nearly a year and a half later, I am on anti seizure medication (number 1 taken care of) and on Friday afternoon my endocrinologist called and told me all my tests indicated that yes, I had hypoglycaemia (you don’t say…)

I had two choices.  I could go to a more specialized endo and get more specialized tests done which probably would result in some extensive surgery (read: remove part or all of my pancreas) OR I could try prescription medication to see if that would bring the condition under control.

I chose the medication option since I already have a Frankentummy and I don’t really want to Frankenize anything further at this point.  My endo said that would be his choice as well and then called in a script for the acarbose I had been taking in Israel, had asked for a year and a half ago from the nurse practitioner (until I could get an endocrinologist appointment) and had even asked the endocrinologist for at my first appointment.

I started taking it right away.

He told me to check my blood sugar 4 times a day and then bring my meter in and if it remains steady, they’ll sign the form for the DOT so I can get that much closer to driving again.  YAY!

In the meantime, I am happy.  I take the acarbose tablet when I start to eat.  I eat normally.  I don’t feel like I am going to die.  I don’t feel ravenously hungry in between meals.  I don’t have the fear anymore…I feel calm like I know that this is what I know will work…after all it Has worked so why wouldn’t it work now?

This is definitely a good thing!

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Booyah!

For the guys who read my blog this is going to be really boring. Hell, for the gals who read my blog this probably also will be really boring but I just have to crow a bit.

You know how obsessed I am with my weight. I mean I went through a massively life altering surgery to get it under control and for the most part, medications excepted, I have remained pretty stable. Yeah, I have gained weight and yeah I have a problem with my blood glucose levels that is concerning right now and I have to deal with that but I do worry that I went through this all in vain and when I see the scales creeping up, I do start to freak a little. Regardless of whether my surgery was the right or wrong thing to do (and I would do it again despite the issues I have…so far the benefits of lowering my heart attack factors with a mother who died at age 40 of a massive heart attack from those very factors, well, I look at it like a pre-emptive mastectomy I guess) I live with it and I don’t want it to be in vain.

Soooo. Here I sat with an extra 430# packed on mostly from my anti-depressant medication. When I saw my doctor about my migraines, she put me on topamax which I must admit has been a wondermous medication despite what you might read online. I was a little apprehensive because of all the crap I’ve read. For me though it has cut me down from from daily migraines to 1-2 a month and if that’s not miraculous, well, I don’t really know what is. But I digress.

When we were discussing what she’d put me on she also mentioned topamax was wondermous because it would help me lose some of this excess weight. I, naturally, didn’t believe her even though I really wanted to. I was walking 3 miles a day pretty much every day and no matter what I did – exercise, 1200 calories a day…nothing helped. And of course, even the topamax didn’t help. I started that in August and so far, the weight wasn’t moving down even though I’ve stayed relatively stable. Which, I admit isn’t a bad thing.

I was considering a radical revision surgery until an online friend died from a revision surgery slightly MORE radical and then I just decided I was okay the way I am and remaining stable could be a goal in and of itself. Being alive and healthy was a GREAT goal and so I made it my goal and decided that was what I wanted more than being back to the thinnest I had been since high school.

In the meantime I also bought a new digital scale, mostly for Evan, who has been losing weight, and it seems, getting a LOT taller. I want HIM to be healthy but I also want him to monitor his weight loss, muscle mass and bone density so he does this in a healthy way. Of course I am using it too because I am at an age where muscle mass and bone density matter quite a bit too!

And the most fantabulous thing has started to happen. Well, two things. Motivating things, at least for me.

Since the scale has come, I have lost 6 pounds! And this has motivated me to MOVE a lot more! Not just once a day as in walking 3 miles in the morning but all through the day! I eat until my little Frankentummy feels full which is what I am supposed to be doing anyway. I fill it with fruits and vegetables and protein (corn is my current “thing”) and a little bit of starches and crazy stuff (okay, I raided the oatmeal cookies last night and had a Hershey bar) and every single morning I get a little tiny surprise. I don’t eat past my full point anymore. I try not to eat things that make me feel like death has come to visit. I drink more herbal tea and water. And I move a lot more. Stretching and bending more. I guess it’s back to yoga time for the winter 🙂

So I wanted to share this little victory. I don’t know if all of this plus the topamax is the key. I like to think it is because it’s supposed to be. And maybe it is. I am 14% to my goal and waiting for the first rebound weigh in because I am sure it will come and I am also sure it will disappoint me but after all of these losses I sure have a lot of success to look back on and know I CAN do it and I HAVE done it.

The scale also has an app that keeps track of the losses for me which syncs to the app I use for my UP band that I wear to track my sleep and steps every day so when I feel less motivated I can look at that too.

Motivation is key I think and I have a lot of that now. I just hope I can keep my enthusiasm together for the long haul and the rest of the 86% of my journey to goal!

Stomachtime blues

I spent the entire day Tuesday in the emergency room.  I don’t so much have a problem with that because, I mean, I did call my PCP complaining of a weird pain in my upper abdomen that felt like something was stuck and I DO have a gastric bypass…so it could have been any number of things.  The most prudent thing to do to get me seen quickly and tested promptly was to send me straight to the emergency room.

It was a whole day adventure which involved a whole lot of barium which culminated in a short-lived CT scan which showed a thickening of some connection between my stomach and my intestines.  I probably should follow-up with my PCP and get a referral to my bariatric doctor.  It scares me a little because while I have my little tiny Frankentummy, my great big “remnant” stomach still hangs out as well.

And that sometimes worries me because, well, what happens to that if something goes wrong?

In this case, the problem is with my Frankentummy.  I can identify when the problem started which is when I was hospitalized in June and they switched me from prilosec to protonix.  I remember clearly (which makes me a little complicit I suppose) being told that prilosec was THE drug of choice for us RNYers (that is the type of bypass I had) and not to accept another kind.  But I was also assured in the hospital that protonix was the “same” thing.  Then when my THEN PCP substituted it for my refill of prilosec, I lemmingly went along.

And now we see where that has gotten me.  Yep….with a pre-ulcer and enough discomfort that I can’t sleep and sitting for long periods is uncomfortable and letting my stomach get empty isn’t exactly a walk in the park either.  Of course filling it up hurts too.  And drinking?  OY!

So far my bypass has been pretty cooperative.  If I eat right and exercise moderately we get along okay.  I started to think about getting a pretty radical revision done but in the line of exploring why I have gained 40# I discovered a lot about my slovenly ways.

I don’t move enough and I eat entirely too many processed carbs.  My battered Frankentummy is quaking as I remember!!!

I have since decided NOT to proceed with the radical surgery, to buy some clothes that will fit, to work hard on my really wayward habits and if this is what I am then this is what I am which isn’t bad at all.  I can live with this.

Emphasis on LIVE.

Sadly one of my online friends who had a revision (not the one I was considering but equally as challenging) passed away from complications and that was a HUGE wakeup call.  I don’t need that surgery and because I don’t need it…I can live the way I am.  I am fine the way I am.

So…I spent Tuesday in the emergency room.  My Frankentummy is a little battered but hopefully it’s on the mend.  My stupid insurance wouldn’t pay for the meds I need but I have a slush fund I could pay for the over the counter brand with.  So I am good.

And really.  I am good.  I am really good.

Sore Fingers Today

I have severe hypoglycemia.  It’s a real bitch too because I have had two grand mal (tonic-clonic) seizures from it and I live in absolute fear that I’ll have a really bad low, won’t be home and I’ll have a seizure.  I blame my 30# weight gain on it AND my food addiction.  I just worry that I won’t be able to keep it steady so I eat all the time OR it drops and I eat and then it drops unexpectedly and I eat and well, you get the picture. 30# later if I am not full ALL THE FREAKING time, I panic.

It’s a sad way to live.

I finally decided I had to see an endocrinologist and I decided to go the distance and see the one I’d been seeing before I left for Israel.  In some ways it was a good choice because he had my records from 2010 when I was there for (go ahead and guess) hypoglycemia although it wasn’t so good because his middle name is NOT bedside manner.

He told me that my failed glucose tolerance test meant absolutely nothing to him (thanks, I drank that nasty ass orange crap and had a 40 low for nothing then) and that I’d have to go “make nice” with the lab and then get myself into a bad situation (read: nasty low) and go get gallons of blood drawn for half a gabillion weird tests that no one has ever heard of.

And that’s not exaggerating because when I went and made nice with the lab (good tactic if I do say so because….) they hadn’t even HEARD of two of tests and had to call their regional HQ to get the coding for them and even the regional HQ had to look them up.  Even THEN they couldn’t identify two others without calling the doctor AGAIN for guidance.

The supervisor at the lab keyed it all in and then told me that when I hit that “sweet spot” and had a good low to get myself in pronto and they’d take me right away.

So…I talked to him last week when he called me to tell me not do strenuous exercise before one of the tests (really?) and assured himthat today would be the day.  Actually it had to BE the day since it was the only day when poor Scott wasn’t running everyone back and forth all over Gd’s creation to doctor’s appointments and whatnot.

This morning I got up and started off with toast with apple butter.  When Scott got up at 7:30 I was at 180.  We talked about when we wanted to have to low hit and I knew it would happen about an hour after I ate something so terrible it couldn’t even be classified as food.

In this case it was going to be two packages of Little Debbie Swiss Rolls (I am gagging even as I write this.)

So…Scott went to get his hair cut and I sat in the car and ate 3 of the 4 rolls.  There was no way for love or money you could get me to eat that 4th roll.  I was almost ready to just hurl it all out and I couldn’t imagine anyone ever eating more than one package of these even though I know there are those who do (and I am NOT judging) – all I wanted as a hash brown or something that didn’t taste like crusted sugar and chocolate to cleanse my overloaded palate.

But…I had to suck it up.

So we went to pay the insurance, get Scott’s license picture taken and do some shopping at the grocery store which is where I hit the sweet spot.

I knew it when I couldn’t see anymore so we scurried into line, paid even though there was a HUGE error on our receipt and ran out and across the parking lot to the lab.  I was shaking and in a sweat.  I checked my glucose and I was at 50.  I knew we were on borrowed time before my liver decided to take some of my fat and send it northward to my pancreas so we ran in and wrote RUSH on the signin.  Scott even told the tech that his wife needed to be drawm immediately for her blood sugar before she had a seizure!

HUZZAH!

That pulled me past two folks who were there with appointments who weren’t really pleased with my cutting line (I am SOOOO sorry…really) even though I sort of had an appointment which I sort of made three weeks ago sort of but hey, they wouldn’t have known that would they?  Sorry again.

Once we were done I was STARVING so I had a 7 layer burrito and a taco (now you know why I am FAT) and went to my therapy appointment.

I have to admit my fingers are sore from all the finger sticks I did today.  I have hit three lows since that induced one and I know the rest of the week will suck until I can get a good diet of fruit, veg and protein back into my system.  But strangely that’s okay.

I know that I still could have a seizure but I also know that MAYBE this time something can be done.  MAYBE something WILL be done.  When I was in Israel my endocrinologist put me on acarbose and that worked really well.  I’d like to do something like that again.  Something that will keep me steady.  Then I can get on a good, low calorie diet…more activity including my daily 5k…and hopefully kick my metabolism back into gear.

So…while I may have very sore fingers today..I also have hope.  I think it’s a fair trade off.  I’ll keep you posted.