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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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.