Wednesday, July 31, 2013

So. Is It Worth It?

My one major message as an advocate for Type One Diabetes is that it is a personal disease. None of us are similar. None of us have the same struggles day in and day out, none of us can treat the struggles we encounter the same way.

I just want a little recognition outside of the diabetes world (and uh...sometimes inside too) that while this chronic illness comes with similar symptoms it is not a similar disease when we go from individual to individual.

I wanted to make that clear before I go on with this post because it's a doozy, and what I do (and expect from me) is probably completely different than what you, your mom, your kids, your sister, your cat does and that's ok. It talks about balancing mental health, a personal life and diabetes all while maintaining a cool outer shell.

I don't judge anyone for any of their own choices when it comes to their diabetes, and I wouldn't ever judge anyone because of a number they chose (or choose not) to share.

Ok. We clear on that? Good? Good.

I met my new/old doctor today. I had my lady check up, my 3 month blood work, and a fascinating conversation with her. She is truly one of the most fabulous people I have ever met and if anyone is meant to be a caregiver and doctor it's her.

I sat in the room waiting nervously with my list of questions/medications in hand. She breezed  in with her cool red haired bob bouncing and apologizing profusely as she hadn't had her coffee yet and she was running behind (um it was still 3 minutes before my appt. time.)

She looked me over thoughtfully and said "I don't remember your face, but don't be offended, talk to me like we're old friends and it will come back to me. Tell me your story."

So I explained that I had moved around and bounced from family doc to family doc over the past 7 years since I have seen her. She nodded and asked me questions here and there about my life. Spouse, interests, job, family history etc. Then we got to the good stuff. She looked at my blood work and she said "well, everything is great." and rhymed off cholesterol, etc. And she got to the A1C of 6.1 as soon as she said it I looked at the paper for confirmation and I whooped right there. A deep sigh of relief post whoop made me realize...I hadn't told her I was Type One. She didn't know (or remember). I looked at her and said "That's pretty good for 23 years on Insulin, yeah?" And she smiled big and said "well you didn't tell me you had diabetes, and judging by this I wouldn't have really known."

We chatted more about the pump, the Dexcom, and other treatments. I explained my woes with my endo, and she referred me immediately to her friend who is an endo and said she will see me in 3 months.

I respect people who don't post their A1Cs. I respect people who do. It's a totally personal choice and how you get to those numbers is your personal adventure. I blog about mine because it helps motivate me.

So I posted my results on my Facebook. Most of my Facebook people are friends or people with diabetes in their lives.

One friend (a fabulous d-mom, you probably know her as Lea) asked me: "Is it worth it?"

My answer? Yes and no.

It's hard work. And it's not even to say that people who have higher A1C's are not putting in just as much, possibly more (though from how I feel...maybe not) work into their treatments and self-care. It's just this whole taking care of yourself thing while living with a chronic illness is hard. It's hard mentally, physically, emotionally. It's hard on your job, your relationships. It's hard on your wallet.

It's hard.

What have I changed? How did it happen for me? Over the past 1.5 years here are the changes I have made, all thanks to members of the diabetes online community. (I have not been to an Endo or CDE since I started my new pump in April 2012....so uh don't do what I did. Get a doctor's advice.)

-I don't eat if my blood sugar is above 8.0 (144) anymore.
-I cut my food intake in mornings in half (no more nice big brunches or breakfasts.).
-I noticed foods that set my sugars off and have stopped consuming them.
-I check my blood sugar ~8-10x a day.
-I am extremely aggressive with corrections, temp basals etc.
-I bolus 1hr before breakfast no matter what my blood sugar is. AND I eat the exact same breakfast every single day.
-I started wearing a CGM, and adjusting my basal rates aggressively to match the patterns. Almost Obsessively (I currently have 9 basal settings which work GREAT.)
-I read and took heed to the book Pumping Insulin (changed my whole outlook!)

I have made some sacrifices in my personal life too.
-I don't get to sample as many yummy cocktails as I would like & beers are getting fewer
-My coffee is getting darker (as in not using as much creamer, despite my love for it)
-My mornings are getting earlier so I can get ahead of the hormonal spike
-My eating at restaurants is well planned, and I try to avoid the fried stuff unless I am 100% emotionally prepared for the BG spike BEFORE ordering.
-Driving anywhere takes longer because I will not put the keys in the ignition unless I have checked in range in the past 30-40 mins.
-My social media is annoyingly filled with information about diabetes, mostly on a selfish basis as it motivates me. I think this has caused some of my friends to distance themselves from me. Really, I do. And that hurts.

So is it worth it?


Doctors, family, friends, researchers tell me a resounding YES. Some days are worth all of it. Every grape-counting, pasta-measuring, cheese and olives instead of ice cream for dessert eating moment.

Some days I curse it and just don't want to care and it's a resounding NO. For a day, an hour...even for a minute I don't want diabetes in my mind. But I don't have that option. We don't have that option. So we do what we can when we can and that is how it is.

Tuesday, July 30, 2013

DSMA & DECA at AADE

Ugh. Sometimes I hate being in Canada. Most of the time I love my country, but when it comes to DOC things and advocacy work, USA is MILES ahead of this place. I wish I had a job that got me to places like AADE.

DSMA (Diabetes Social Media Advocacy) is also hosting a d-meet-up next week. Sighhhh. I will miss y'all!

DECA (the Diabetes Education Camping Association) is holding a Train the Educator session at AADE next week in Philly. Here's an email from Shelly Yeager about the session:

If you're a HCP you should go.



DTreat Trainer Program for Healthcare Practitioners
The Diabetes Education and Camping Association and Camp Educators COI, an official Community of Interest of the American Association of Diabetes Educators, are making plans to host a seminar to orient educators on the successful "DTreat" model for young adults - a retreat engaging the young adult community with healthcare partners. 
The seminar will be held on Tuesday, August 6, 2013 from 1 - 4 PM at "The Hub" meeting room across the street from the Philadelphia Convention Center at AADE.
If you are interested in learning more, please email info@diabetescamps.org by Wednesday afternoon, July 29, 2013.  We only have room for the first 30 interested people.
Please forward this message to anyone you feel might be interested.
Shelley Yeager, Director of Outreach & Development
Diabetes Education and Camping Association


What is it like to wear a pump

I just finished reading a great post by Reva over at TypeOnederful. You should check it out here.

She really nails home the importance, freedom, and awkwardness of wearing a pump. Thanks, Reva!

Monday, July 29, 2013

Re-stock!

It goes a little something like this.

I'm typing typing typing away at work. Doing my job like it's nobody's business ant then it hit me. My stomach growled. My head just dipped and my eye lids dripped with lead.

I checked my blood sugar and it told me I was 3.8.

Now just an hour earlier I was 11.7 and I gave my usual correction. So judging by that number I was plummeting.

I went through my purse and pulled not one but two empty Dex tubes AND an empty juice box. So I went through my work snack drawer which had only a protein bar and some expired soft cookies (note to self: re-stock)

I went to the kitchen. I knew the work fridge had cans of regular cola, but I didn't want that amount of calories.

Suddenly the room got dark and a light shone on the table.

There were communal Jelly Beans left! I dumped the remaining contents into my hand and counted ten beans. All lemon and orange (gag...my least favourites)

By my calculation 10 beans had 18g of carb so that should have kept me fine until I got home with a basal reduction of 30%.

I was so happy to find those Jelly beans.




Friday, July 26, 2013

A Fond Farewell

Today I bid a fond farewell.

The sweet, sweet Dexcom my friend has given me to replace the receiver I lost in April

My friend lent me his Dexcom under the promise that I would give it back with a few sensors. Not. A. Problem. People have been so kind in selling me their remaining 7+ sensors I had no problem sharing the wonderful warmth I felt from the DOC. Today he request it back as he was going to start training for a marathon. I am so proud of my friends with diabetes who do shit like this!

My receiver was lost when I went for a bike ride. I put it in my bag as I usually do, only to discover there was a hole in the bag. I traced my steps around the neighbourhood several times. The 7+ receiver looks like a cool electronic, so I am sure some neighbourhood kids found it and kept it to play with

I have come to be comfortable with the Dexcom. It definitely wasn't 100% accurate, but the trends really helped me fine tune my basal rates, my A1C dropped .5% from 6.8 to 6.3, I slept soundly at night...it was an all round positive experience.

I am so grateful for the kindness that was extended to me originally when I was desperate. And for the kindness that kept pouring over me over the past 7 months. I just wish that I didn't have to plea for the supplies.

When I tweeted about this earlier my friend Jenn brought up a very valid point: Hasn't Health Canada approved Dexcom in Canada? Well...yeah they have. But when I go on the Dexcom website I can't purchase a system. When I call they don't want anything to do with me as a client as they are apparently in talks with getting it distributed.

Now here's what I do know: the Animas Vibe is also going through the Health Canada red tape. I believe that Animas Canada is going to be the distributor for the Dexcom G4 and launch it AFTER the Vibe to encourage more people to upgrade or switch to the Vibe....which, don't get me wrong, I will be doing no matter what.

I just wish that Pharma companies didn't have this kind of power of the health and well being of so many people. At this point I strongly believe it's a marketing ploy. As someone who works on the business side of marketing...I totally get it. I just wish it wasn't the way it had to be.

Wednesday, July 24, 2013

I just hid my diabetes

I just hid my diabetes.

I have never, ever done this in my life, and it feels awful! 

You see I am on the bus home, in a gridlock (natch) and I feel a little low with a 40min ahead. I looked around and I hid my test kit in my purse and tested a 4.3.  

I discreetly emptied a few glucose tabs in my hand and ate them all at once while staring out the window.

Why did I do this today?

Because of the looks I get. Normally I can handle them and brush them off, but today has been exceptionally difficult in terms of taking an emotional beating at work. I just feel if one person gave me the "of course you have diabetes, you're fat"  look I would break down and sob.

I know it's not true, and most of the time I use times like that to educate, but not today. Sorry, pals. More education next time, when I am a little tougher.


Monday, July 22, 2013

A Good Doc

Well y'all I had some very positive news today!

I have been struggling at an epic level trying to get some more blog posts out lately. I don't know why they just don't come to me. I have a lot to say, but when it comes to spilling everything out on screen my backspace key reigns king, the lid gets closed on my laptop and another deep swing of disappointment finds its way down my throat. It's just a case of writers block, to be honest. Trying to put in words what is happening in my brain has been difficult.

(45 minute break to watch Orange is the New Black)

Anyway on to my good news.

I have spoken in the past about my struggles with connecting to a doctor. My endocrinologist leaves a bad taste in my mouth (I mean she even uses the term "difficult" and "brittle" to describe me.) And I have bounced between 5 GPs in 7 years since I left my fabulous, amazing, caring and wonderful doctor at the University medical centre.

Today I opened my last refill of Insulin and groaned. I had to go to the doctor. I called my regular GP (who I am neutral on. He isn't good or bad.) I was told he CLOSED HIS PRACTICE without warning.

So I was back at square one. I dutifully started googling and ratemd-ing new docs. I stumbled on my doctor from university. A feeling of comfort washed over me. To set this story right, she has the highest score possible on Rate MD. What I am saying is that I am not the only one who feels this way about her.

Here are a few excerpts from patient comments about her:

"I LOVE YOU. DANIELLE lewington is one of the most caring and knwlefgable doctors ive ever met. when i adressed her my concerns she asked me many questions to try and figure out what was wrong. She did proper procedures and took the extra mile to get a follow up on my blood tests, xrays, and to also make an appointment with another specialist to help me cope with my syndrome. this was all in 1 single appointment, and i am very pleased. i would definatley recomend her. THANKS DOC <3 "

"Excellent doctor. I was looking for a doctor after mine retired; and, as a patient of the same doctor for over 35 years, I was not going to be easily satisfied. However, I couldn't be happier with my choice. She is pleasant, thorough, interested in you as a person and makes you very confortable regardless of your concerns."

I called around and no doctors were taking patients that were not prenatal (and that's not me.) Finally I stumbled on Dr. Lewington's practice. I didn't even know she worked outside of the university, and here I was speaking to her secretary. Her secretary informed me Dr. Lewington was not taking on more patients, and I sighed and asked her who else may be taking new patients on. She proceeded to start to book me in with the incoming brand new GP. We chatted as she started clicking through her schedule and I casually mentioned how Dr. Lewington was my doctor in University and she was wonderful.

The secretary immediately perked up and informed me that the doctor was accepting all former SMU patients! She booked me in for the end of the month.

I wish I could convey what this means to me. 

Living with a chronic illness it means so much to have a medical team you can truly connect to. It's so important to trust your team enough to share all details of your health. I am actually looking forward to seeing her so much that I started making a list for her.

I am even getting my blood work done early tomorrow :)

Ill keep you posted!

  

Sunday, July 14, 2013

Guest Post- Meredith Miller from Type One Diabetes Memes

Editor's note: In January I flew half way across the country to attend Winter Slipstream with Connected In Motion . I met Meredith at this event and had some great chats with her, did some activities with her and discussed a lot of different things. What I didn't realize until I was packing to go, was Meredith was a co-manager of the popular Type One Diabetes Memes Facebook page. Meredith is a great advocate, was diagnosed with Type One as an adult, and someone I am happy to call a new friend. I asked Meredith to write a post about her experience with Diabetes and what brought her to the Diabetes Online Community and Connected In Motion. Here's her story:

Unity in Diabetes

Well I just want to begin by thanking Alanna for asking me to do this guest blog post! As I do not have a blog of my own so this is a fun thing for me. I really like to share my story when I get the chance.

I was diagnosed with Type 1 Diabetes on July 29th 2009. To find out my diagnosis was almost a relief, because I knew something was wrong but couldn’t quite put my finger on it for the few months leading up to it. I had gotten some standard blood work done, because my doctor thought I may be low in iron. I didn’t have the majority of the typical type 1 diabetes symptoms (no extreme thirst, no frequent urination), but I was experiencing blurred vision, trouble concentrating at work, and sudden light -headed spells. After looking at the results of my blood work, my doctor told me that my blood sugar was elevated, and that I needed to go in for a glucose tolerance test. For those of you who haven’t had one before, they take your blood, tell you to drink this ridiculously sugary syrup, then your blood work is taken again 2 hours later to see how you recovered.

While waiting on my results for this, I visited a friend to celebrate her 20th birthday over the weekend.  We went out for the evening and I only had 2 (although very sugary) alcoholic drinks and, of course, snacks when we got back home. I spent the next morning throwing up and feeling like I was having the worst hangover of all time. Which was strange because like I said, I had only had 2 drinks. I realize now I likely had bad ketones. When I came home, I got an urgent call from my family doctor, urging me that I should come into his office right away the following morning.

After a nervous car ride to the doctor’s office, and equally nerve wrecking wait in the waiting room with my father, my doctor told me that I had Type 1 Diabetes. I had definitely “failed” that glucose tolerance test because 2 hours after drinking that syrup my blood sugar had RECOVERED to 17 mmol, yikes! It was more than a bit of a shock because I had spent the last 2 weeks saying to myself “It could be diabetes, but it probably isn’t, so don’t worry”.

I had my suspicions because I was already more than slightly familiar with Type 1 Diabetes. My older half-sister Julie, was also diagnosed with Type 1 Diabetes (at the age of 7). At the moment my doctor told me the news, I was in denial and shock of course, but what I really felt was sadness for my dad. I felt like he was experiencing the same thing over again with me as he did with Julie.                                                        

She only lived in my house for a short time when I was little. Although I was young, I can still remember multiple times when she  had a seizure in front of me from going too low and we had to call 911. She had a lot of difficulty with blood sugar control, and she frequently had really bad lows. On the day of my diagnosis I thought that was all that Type 1 Diabetes was, frequent  911 calls and near death experiences. I thought that it would be the same for me. I was terrified.
                                                                                                                                                                          Since I did not have any ketones on the blood work (weird right?) my doctor did not put me on insulin right away. He was not sure that I was actually a Type 1, since I was 20 years old at the time. As it turns out, we had caught it really early and my pancreas was really slow to decline.  I was able to stay off insulin for over a year and a half, with help with some type 2 meds. Seems a little strange I know, but because of my past experiences with my sister, I sort of had an insulin-phobia and was trying to keep from going on it for as long as I can. I think it was a bit of an acceptance thing for me as well. I felt that as soon as I went on insulin I truly was “a diabetic”. Obviously I could not keep this up forever as my pancreas really was calling it quits, and I finally started insulin injections in December 2010. I was so paranoid about lows that I tested no less than 20 times a day (my poor fingers!). After a few months  I decreased my ridiculous amount of testing to about 10 times a day and started on my insulin pump in May 2011 (which I love!)                                        
                                                                                                                                                          Having experienced what I did with my sister, I made it my mission to NEVER let diabetes control my life as it did with her. Instead of letting it get me down, I decided to choose the positive route and continue to get everything I could get out of life. Now almost at my 4 year dia-anniversary, I can’t believe how much my life has changed since that day. I thought my life was over that day, sitting in the doctor’s office, but it really was the opposite. As much as Type 1 Diabetes sucks on a daily basis, I’ve got so many good things out of it as well. One of these things include actually getting healthier. I started eating so much better because I so much more aware of the food I ate and started exercising. I actually lost 15 pounds post-diagnosis just from a healthier lifestyle. 
                                                                                                                                                                  The second great thing I got out of my Type 1 Diabetes diagnosis, was connecting with other Type 1 Diabetics. When I was first diagnosed I really didn’t have any one to talk to that truly understood what I was going through with Type 1 Diabetes. I had super supportive family and friends that is for sure (who I am very thankful for, especially my Parents), but try as they could they didn’t truly understand what I was going through on that level.
                                                                                                                                                                   
Meredith on a CIM Canoe Trip. Luke's in the Background. Hey Luke!
I have to give a HUGE shout out to a group called Connected in Motion, because it was at one of their events that I first was in a room full of Type 1 Diabetics. It was such a surreal and amazing feeling that I will never forget. I’m now a part of their community and frequently attend events. Talking with other Type 1 Diabetic’s face to face, and being in an environment where testing your blood sugar is something everyone does, is just amazing. I really can’t explain in words how thankful I am that I have been given the opportunity to go to events and experience this. It’s helped me accept my diabetes and that it is okay not to be the “perfect diabetic”.
                                                                                                                                                                  In going to events I made many diabetic friends, including Kayla Brown, who was also diagnosed 4 years ago as well. She has a very popular blog in the Diabetes community (Kayla’s Life Notes) and like me, she had adopted a positive, “diabetes won’t get me down attitude” from the start. In both of our universities, things called “memes” started to become very popular. For those of you who don’t know what a Meme is, it’s basically a photo with a funny caption that people share with one another via the Internet. All of the universities had their own Memes page, and so Kayla thought to herself, why not make one for Type 1 Diabetics?

Meredith and Kayla Promoting the Memes page at a JDRF event
As soon as I saw that she made a Type 1 Diabetes Memes page, I knew I had to jump on board. It was fun to think of funny experiences and habits that only other Type 1 Diabetics would understand, and to express them through memes. It wasn’t long before our page started gaining in popularity. From a few hundred likes in the first month (February 2012), we grew to 15 000 on July 12th 2013! I still can’t believe how fast and how much the page has grown in almost a year and a half.
                                                                                I really love expressing my Type 1 Diabetes experiences through positivity and humour. To be honest it is really therapeutic for me. If I’m having a bad diabetes day I make a meme about it. Instantly 100’s of people relate and comment. It truly is amazing to connect and relate to so many other Type 1 Diabetics around the world in such a positive way. We are all bonded and banded together on a level that non-diabetics really cannot understand.
                                                                                                                                                               Kayla and I now run an online store with funny Type 1 Diabetes related captions that is tied into our facebook and other social media pages as well. I love to design shirts so this has been a great creative outlet for me.
                                                                                                                                                                   I’ve heard the quote a few times now “I have diabetes, but diabetes does not have me” and I truly believe that this applies to me. I’ve done everything I wanted to and more despite my diagnosis and it has brought so many good things into my life. I would never say I LOVE having diabetes, but having a positive attitude and a sense of humour about it really helps get through the day to day struggles we all experience.
If you are interested in the Type 1 Diabetes Memes pages follow the links below
                                                                                                                                                                Facebook:
Tumblr:
Twitter: @T1diabetesmemes
Online Store

Thank you for letting me share my story! 
-    Meredith M. 


Thursday, July 4, 2013

How to Enjoy Sun With Diabetes

Image from www.sixuntilme.com
Go read her blog (after you read and comment here.)
 Kerri is insightful and hilarious.  
While we don't ever let diabetes get in our way of having a good time, it's important to be mindful of what is happening to the goods that keep us good, while we are out enjoying the sun.

I have made a list of awesome tips that you should listen to and use them like gospel,because I am super and may or may not know that these things are important from learning the hard way.

1. Wear sunscreen. Sunburns are a stress on the body, and a sunburn may cause your blood sugars to rise or fall rapidly.

2. Drink water! Did you know that staying hydrated not only keeps your body cool, but insulin is more effective when you are properly hydrated? Also, if you wear a CGM your readings will be more accurate. Try adding slices of fruit, crystal light etc to your water. Sparkling water and sports drinks work too if you're into that. Hydrate, hydrate, hydrate.

3. At the beach? Bury your insulin and meters, or toss it in the cooler with your mommy juice (aka beer and wine spritzers. Not that you'd drink those at the beach...........) So, logic tells us to keep our insulin cool, but at the beach that can be difficult. If you have a cooler, stash your 'slin in it of course. If  you don't have a cooler, dig a hole in the sand under your blanket until you can feel the sand get cool and damp. Throw your slin/pump in a baggie/wrap it and bury it. Just make sure you can remember where you dug. As an Animas pump wearer I wear my pump when I go swimming, so it cools the insulin off with me.

4. Get a Frio

5.Don't forget your meter! Test often and keep it cool. Heat can cause strange things to happen to blood sugars, and we may not feel highs or lows when our body temperature rises. Make sure you store your meter with your insulin somewhere cool and dry to prevent it from overheating.

6. Eat Ice cream. Because: ICE CREAM.

What other tips do you have for the summer heat and diabetes?