Monday, February 28, 2011

My Endo-mance, or, Why I Love My New Endo

So, it turns out all my worrying over whether or not my appointment with my new endo would go smoothly and be productive was unwarranted.

My new endo is fabulous.

If there was a patient equivalent of a celebrity crush, or a bromance - or in my case, a womance - I would have one for my new endo. Sigh.

She did all the right things and asked all the right questions. Her practice ran like a smooth engine. It was almost like she could read my mind and anticipate all my questions before I even got up the nerve to ask them. She used all the latest gadgets not only with Type 1 care (in-office A1C, pumps, CGMs, etc.), but also with her practice management (EMRs, in-between visit e-mail contact, on-line patient access for labs and Rx requests and so much more!). We have the same views on the controversial "to statin, or not to statin" issue. And, she even checked my feet with that little soft needle-y thing and didn't mind that my feet were sweaty and covered in sock lint!

While I was sitting in the waiting room I saw her practice nurse compassionately interact with a walk-in patient who had financial difficulties with regards to paying for medications. There was no judgement, no brushing off, and they figured out a solution right then and there! No appointment necessary!

So, right now, I'm sitting in a euphoric heap in my living room, surrounded by brochures for pumps and CGMs, trying to focus on picking the ones I want. But, it's hard to focus, because I can't stop thinking about how great my new endo is.


(Is this post too creepy?)

Saturday, February 26, 2011

New Endo/Nervous Jitters

So, it's been almost two years since I've seen an endocrinologist. Don't judge me. I try hard not to be a bad diabetic, but sometimes the world doesn't really help me out.

My last endo experience was pretty awful. I was a graduate student, with crappy insurance coverage to begin with, and had to see a specific endo on my student insurance plan. I had no choice. And had to pay $$ out my ears to see said endo. There were many reasons my last endo and I didn't get along, not the least of which included:
  • Poor practice management (messing up countless Rxs, losing my test results, making me wait HOURS for a 5 minute visit, etc.)
  • Giving me no help what-so-ever with diabetes control, i.e. if you can't give me insight into what's going on with my diabetes treatment that I can't figure out for myself (after 18 years of having Type 1), I'm not going to wait hours to see you for 5 minutes to have you tell me something I already knew
  • Trying to kill me with "preventative statins" (In his defense, this is a controversial subject, and he couldn't have known I would have one of the worst side-effects from them), and then getting mad at me when I wanted to find an alternative to statin Tx
  • Telling me "well, we'll just have to deal with your high numbers until you can afford to go back on a pump." What the what?!!
  • Misclassifying me as a Type II on my medical record & drivers license medical form, even though I've been a Type 1 for EIGHTEEN YEARS. Sheesh.
  • Not understand or being willing to work with me WHAT-SO-EVER on my limited budget.
  • Should I go on?
So, there was that whole experience that kept me from seeing an endo. And then there was money. Lat year, I got new insurance, and the option to see other endos, but I had a SUPER high deductible, so I avoided it, because I would have to pay the whole thing totally out-of-pocket. Luckily, just through my GP, I was able to maintain a pretty darn good A1C for MDI.

This year, we finally have a better insurance plan! I have a super LOW deductible, and made an appointment to see an endo as soon as I could! I couldn't get into the one I wanted to try until the end of this month, and my appointment is coming up on MONDAY!

And I'm terrified.

I SO want to jive with this endo. I've had amazing endos in the past (when I lived in a different state) and I want this endo to be like those. According to her practice web-site this endo's practice specializes in treating Adult Type 1s, and they have a lot of the other features in an endo I want like in-between visit e-mail contacting, in-office A1C & lab testing, a PA who is a CDE and a pump trainer for lots of different pumps and certified to do CGM training, etc.

But, what if this endo is awful, too? I am normally a highly motivated patient, when I have the tools I need at my disposal, and I want an endo who will work with me and not blame me or make things difficult for me. After 18 years of this mess, I'm just so tired of doctors and having to fight with them for what I need and want. Is it too wrong of me to just want things to be easy for a change?

So, any advice, peeps? I'm willing to give this endo a good chance, I won't write them off after the first visit (unless they do something really crazy like tell me I should try to ween myself off of insulin).

How do you all go about searching for an endo or doctor that you'll be able to work well with? What do you look for in a doctor? What questions do you ask when you first meet them?

Wish me luck. Here's hoping that things go smoothly for a change!

Sunday, February 20, 2011

The Most Awesome Thing I Have Done In Spite of Diabetes Was . . .

. . . living in Ghana for three and a half months!

Side note:As part of the DSMA (Diabetes Social Media Advocacy) Blog Carnival, I'm using their prompt for this month to talk about the most awesome thing I've done in spite of diabetes. I just discovered #DSMA and this is my first time participating in anything DSMA-related, so I hope I'm doing it right. :)

Any way, back to the most awesome thing! When I was in college, I went to Ghana, West Africa to live & study for three and a half months. I was an anthropology major, and my professor/mentor took a group of students there every summer as part of a field study focusing on medical anthropology. In short, we studied different health-related topics focusing on Ghanaian's use of medical pluralism (using "modern" or "western" medicine as well as herbalisim, spiritual healing, bone-setting and other types of healing that are less common in the U.S.) It was fascinating, to say the least!

But, what I consider one of the greatest parts about that whole experience was that I was able to do it successfully WITH Type 1 diabetes!

I have to admit, I was really nervous about going. I was worried about all the worst-case scenario type things. I was worried about not having electricity and therefore a way to keep my insulin cold. I was worried about being able to take enough insulin & testing supplies to last the whole 3.5 months and what would happen if I ran out of them. But, I bit the bullet and just prepared really well and did it! I knew this would most likely be the only chance in my life that I would be able to go and I wasn't going to let a little thing like diabetes stop me!

Here's an incomplete list of some interesting/crazy diabetes things that happened in Ghana.

WARNING: This is a long post because I love talking about Ghana. And also because I am long-winded.

Going Off the Insulin Pump
I was on an insulin pump for about 5 years before I went to Ghana. I was nervous to try to navigate Ghana with a pump, all the tubing and infusion sets and batteries and every other thing that comes with pumping. Plus, I knew that Ghana was super hot and humid, and since I already have problems with humidity/heat caused sweat and infections under IV 3000 tape, I thought going back to MDI (multiple daily injections) might be a better idea. Also, and I'm ashamed to admit it now, I was afraid people might try to rob me because they would think the pump was a beeper or something (turns out I feel safer in Ghana than I do in Columbus). So, I switched back to shots a few months before I left. It was a good idea. It was easier to transport my insulin and supplies, and I do think I would have gotten a lot of site infections because it was so hot and sticky. Also, I knew that if I ran out of insulin or if it went bad, I could at least get some seriously ancient types of insulin at a big hospital in Kumasi or Accra (NPH, Lente, etc., I don't even think they had R). If I had lost or run out of pump supplies, I'd be in serious trouble. So, I think I made the right choice there for my situation.

Frozen Insulin
The home I lived in didn't have reliable electricity let alone a refrigerator. Whenever it rained, our electricity would go out, and we were there during the rainy season, so . . . yeah. Some other students in our group were living in a guest house which had its own generator, was in a more electrically reliable neighborhood, and had a fridge. The guest house graciously let me keep my insulin in their fridge, and one of the students that stayed at the guest house agreed to check up on it for me from time to time when I couldn't. Well, one day I was there visiting some friends, and decided to look in on my insulin, only to discover that it had been put in the FREEZER! Yikes spikes! My entire supply had been frozen! I spent about 6 hours fretting about whether or not I should take it, if it would be safe, etc. That night, one of the other students (who had a cell phone that was capable of calling internationally) was talking to her mom at home in the states, and told her what had happened to me. The mom said "well, hey, I'm at Costco, so let me stroll on over to the pharmacy here and I'll hand the phone to a pharmacist and Erin can talk to him and ask him what to do." So, I talked to a Costco pharmacist in Utah from Kumasi, Ghana. The pharmacist was a little freaked out that I was calling from Africa, but after their usual "must cover my arse" warning about not using insulin if it has been too hot or frozen, they said "you'll probably be fine, it just might be less effective." And, I was fine. I learned in Ghana that insulin can get very hot, and freezing cold, and still be good enough to use. Don't get me wrong, I'm not saying that you should go expose your insulin to extreme temperatures, all I'm saying is that if your choices are between taking nothing and taking insulin that has been frozen, just take the insulin.

Stranded In Burkina Faso
So, while I was in Ghana I took a week off of my research to visit Burkina (the country north of Ghana) with some friends from my program. It was an amazing trip, and we saw amazing things. And all I took with me was a small back pack. :) My problems in Burkina weren't diabetes related, but they could have ended badly, if not for some ingenuity and a miracle. We took a mo-ped trip about 25 miles outside of one of the towns we visited to go see some peaks and waterfalls. We made it out there just fine, but on the way back our mo-ped broke down. BROKE DOWN! In the middle of no-where. Literally, there was no one around for MILES! And, we'd ran out of clean water. Awesome. Well, good thing I was wearing a hair elastic that day, because my ingenious friend managed to fix the bike with my hair tie and we made it back to town. Soon after we got back to town, and were getting ready to leave to head back to Ghana, we realized that we were about to run out of money. Pretty much everything in the smaller towns in Ghana & Burkina runs on cash, and we didn't have enough to get home. Just when we thought our luck had run out, we found out this tiny little town in Burkina had an ATM! It was literally in this cement block room in the middle of a field with nothing else around it, but it took my VISA! Everyone else I went with had American Express, so it's a good thing I brought my card! I'm pretty sure that ATM machine was put there by God. Like, if I went back there today, I doubt there would be an ATM there, and no one would ever remember there having been one there. Seriously, why would there be an ATM machine in that tiny little town? It makes no sense, but I'm sure glad it was there!

A Note About Food
Oh, man the food was good. And spicy. And sometimes a little gross. And took a little getting used to. And it ruined pineapple for me for the rest of my life. There is NO pineapple in this world as good as a fresh Ghanaian pineapple. Mmmmmm. But, I digress. Diabetes-ly speaking, it was a little difficult. The staple was this stuff called fufu, basically starchy cassava & cocoa yam all smashed together into a mashed potato-like paste, but with more starch and less flavor. There were lots of stews made with fish, or goat, or chicken, or who-knows-what-kind-of-meat that were all served over the fufu. There was also lots of rice too. So, all that starch was a little hard to deal with at first, but it was not that bad since I was getting a lot of exercise too. I did find a lot of things I was used to eating too, like bread, juice boxes (excellent for lows), and cookies. :) I tried to stick to clean, "bagged" water (clean water comes in these little plastic sacks) and stay away from things that might make me sick, but I definitely was sick a lot there. Most of us weak-stomached Americans were, and I (as well as everyone else in our group) pretty much had diarrhea for a month straight, but that was not because I had diabetes. You got used to it. :) TMI? It really wasn't that bad, and strangely enough it didn't really affect my diabetes very much, I just made sure to drink water like crazy and stay hydrated, and I was just fine.

So, yeah. That really long post was all about the most awesome thing I've done in spite of the Big D. It was amazing and eye opening in every way that it should be. And, I became a much more confident diabetic for having gone. Sorry it was so long! I really like talking about Ghana. :)

Take THAT diabetes!

This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at