Tag Archives: diabetes blog

Stars Align in the Advocacy Sky

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Martin and I met early last week. We spent a day on Capitol Hill meeting with various representative offices as part of Diabetes Patient Advocacy Coalition DPAC, addressing issues/legislation pertaining to diabetes.

Between meetings, we talked about the clinical trial I’ve been in and devices I’m using.
Martin has lived with T1D for 66 years which is by all accounts, especially Senator Markey’s office, quite amazing, especially considering how crude treatments were when he was diagnosed.

In one of our meetings, Martin spoke about having been one of the clinical trial participants of laser treatments for diabetic retinopathy in the 1970s (‘74). I felt a lump in my throat.

I spent many years feeling ashamed of my own diabetes complications (I didn’t do a “good enough” job). I was just starting my career in design, a visual field, in the wonder of New York City. The diagnosis was terrifying. A brilliant doctor gave me 2 treatment options. I chose a new technique involving very aggressive laser therapy. Many rounds and a few years later, my eyes stabilized.

Now, I get to give research updates and motivational talks for JDRF and I am asked to speak at medical schools about T1D. In this roll, I show photos of the inside of my eye. I explain the laser scars and how my eyes compensate. I encourage (beg) people to get involved in clinical trials, and how I do them for ONE specific reason. I do them to pay-it-forward. I say how I will never get to meet the people who tested retinopathy laser treatments. Some of the first participants went blind immediately. I NEVER say what I was once told, that I would never meet these “testers” because they had died already.

On Tuesday, I learned my talks will have to change a bit. Not only did I meet one of the trial participants whose actions have given me the gift of sight, but I finally got to say, “thank you”. I tried to explain this to New Friend Martin, but I couldn’t get the words out, so outside a Senator’s office, we stood there hugging and crying.

On World Diabetes Day and everyday, Martin, I thank you, again and again, I thank you. 

Bonding outside Elizabeth Warren’s office. Martin was the true star of my day.

Follow Directions?

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I know I still need to post what happened with the eye doctor especially after #DBlogCheck day led to such an incredible outpouring of “good luck” messages (thanks Chris, I had no idea I needed it, but I definitely felt encouraged).  I am still collecting my eyeball thoughts so for now, I have a little ditty about directions (I would not suggest singing this, more like hey-read-this, know-you-are-smarter-than-me, enjoy-your-far-superior-mind).

Bzzzzzzzzzz

Bzzzzzzzzzz

This morning I put my broken slidy door Dexcom receiver in it’s return-to-Dexcom packaging.  It’s been fun, Dexy.  You’re a good egg (well you’re not a 7+ so you’re less eggy and more old school original iPod-esque).  I took off the rubber band that helps me keep the receiver in my pocket (friction, yo!) and placed the rubber band on my *NEW* receiver.  Sad, but I need non busted gear.  Dexcom provided everything I needed to ship Ye Ole Busted Dex back.  Packaging, paperwork, FedEx envelop, shipping labels.  I got to my office, sealed up the envelop, put on the shipping label and placed everything on an office mate’s desk where our daily FedEx shipments are picked up.  Bye-bye Dex.

My office mate came to my office to drop off a shipment.  Nope, that’s going out, not FOR me, FROM me.  She’s super busy.  No problem.  FedEx package back to her desk.  I walked up front a bit later.  She was holding up my FedEx package.  Was she going to try to deliver it to me again?  Nope. “It’s buzzing”.  Yep, buzzing.  The FedEx envelop was indeed telling me my bg was above 160.  I checked the new Dex.  Yes, 171.  Hmmmm.

I took the package back to my desk.  According to NEW Dex, I was around 155 for awhile.  According to Leaving-Via-FedEx-Dexcom, I must have hovered in the 160s ALL. DAMN. AFTERNOON.  I realized I can’t (probably shouldn’t) send a buzzing box via FedEx.  I think I charged-up Broken Slidy yesterday.  That box will be buzzing for a bit.

I called Dexcom.  Explained I didn’t think I should send a buzzing box in an envelop.  The Dexcom dude agreed.  I kept talking because I thought they’d be upset.  I explained how I’ve been busy, I knew I’d had 2 receivers since Friday, I was sorry, I drank 2 cups of coffee instead of 1 today.  Blah, blah, blah.  On the other end of the phone, crickets.  I told the Dexcom dude the instructions did NOT say to turn the receiver off.  I talked about how I’ve been distracted but that the instructions should be spelled out.  Still crickets.  I finally said how the instructions said I would be charged ($) for the Dexcom if I didn’t get the receiver back in a timely manner.  I explained how I guess I could cut off the shipping info and tape it to a new FedEx envelop but I didn’t think they’d accept it.  Still no response beyond a “Um-hmm”.  I finally asked, “How long is a timely manner really?”.

“30 Days”.

So folks, if your Dexcom breaks, and they replace it, use common sense and turn OFF the receiver BEFORE you seal it on the return packaging.  If you do not follow these steps, please note you may drive your office mate insane as the box buzzes and she keeps checking her phone, convinced she’s getting messages from her daughter that aren’t showing up.

Also “timely” means “30 days”.

 

 

Wordless Wednesday Dress-ups

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Dazzled insulin

Let’s face it shall we?  My purse is an incredible place.  A lost & found, a glucose tablet cave, a world of gum wrappers, or just the Land Of The Lost?  Yesterday I pulled out a bottle of insulin to do a site change.  It felt odd.  That’s because it felt bumpy.  I don’t know what’s going on in that purse but things are getting freaky or maybe just fancy?

Hey Insulin, if you’re having a party in there, rock out with your bad self and thanks for keeping me alive, you sexy Diva, you.  xo

Wordless Wednesday a few minutes late!

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This photo looks pretty cool (well I *may* be biased) but regrettably there were some issues with the resin setting.

“Boo hoo,” said this creative diabetic.

I’m experimenting with some patching and creating some negative space within the design, but I will need to create another (read: start over).

Test strip collecting resumes.

Are you free?

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Below is the email I finally finished (I usually have this letter ready to go in June so I am terribly behind this year) to get my friends and family to sign-up for the 2 walks I will be participating in on behalf of JDRF.  I’ve organized/led Alecia’s Stem Cells since 2001.  We have walked every year, rain or shine, since then in NYC, across the magnificent Brooklyn Bridge. In order to keep people involved and interested, I have made it my mission to constantly change things up.

I did 2 walks in two cities in 24 hours 2 years ago (Boston & NYC). I’ve hosted give-aways, walk kick-off parties and post walk parties.  I’ve worn pirate props along with 30 of my friends while walking 3 miles.  I’ve made videos.  I’ve sat in the dark at Battery Park waiting to do TV interviews at 5:30am about why I walk.  If you haven’t guessed it, this is an event near and dear to my heart and this year I will have the largest turn-out of my immediate family we have ever had.  My parents, both brothers and their wives, my sister and hopefully my new niece or nephew are all registered to walk with me.

I’m posting this note to invite you, the DOC, to come join me.  Its a great day for a great cause and I would be thrilled to have us walk together!

As you may know (OK seriously, who doesn’t know?), I have lived with type 1 diabetes (T1D) since I was 6 years old. I have managed to stay alive thanks to insulin but insulin is far from a cure. I am committed to JDRF, the leading global organization focused on T1D research.  JDRF raises funds that power the global movement to cure, treat and prevent type 1 diabetes (T1D).  The goal of JDRF is to improve the lives of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating and preventing T1D.

In the past year, I’ve embraced some new technologies and have become further involved in diabetes advocacy.  I suspected I was having inconsistent low blood sugars in my sleep. I was not experiencing the symptoms of low blood sugar until I was already in the “danger zone” (hypoglycemic unawareness) which terrified me since there are too many of stories of people who hit that “danger level” and simply never wake up.  I now wear another device along with my insulin pump.  It’s called a Dexcom sensor and is inserted into my tummy or my arm (I prefer the arm since my insulin pump is on my stomach).  The Dexcom sensor gives continuous blood glucose readings to a receiver which is always with me and helps me make smaller and faster changes on my insulin pump.  The cool part about the Dexcom is that it gives me trends with my glucose levels although I still have to check my blood with fingersticks throughout the day.  Most importantly though, an alarm sounds if my blood gets too low (and I feel so MUCH safer at night).

Inline image 4

I also completed training to become a JDRF mentor.  The experience was eye-opening especially about issues currently facing many diabetics and their families.  Listening to stories of bullying and depression that often walk hand-in-hand with any chronic and degenerative disease was heartbreaking.  After a truly horrific experience involving an insulin pump emergency on an airplane, I realized that MY story and experiences with managing this disease could help other people, especially parents of diabetic children. Through a series of coincidences or simply fate, I started writing and advocating in the process of trying to give back.  I realized I was getting something out of this too… encouragement not only from my fellow diabetics but from other people who heard and read my story.  I had no idea how much that encouragement would relieve my own sense of stress (and that I’d learn some new diabetes tips in the process).

Amazing advancements are happening all around us and to keep this momentum alive, I am asking you to walk with me!

This year’s Walk takes place in New York City on September 30, 2012, AND we will also be walking in Los Angeles on November 11, 2012.  I’m writing to ask for your support. Now more than ever, you can make a real difference in my life and the lives of all people with type 1 diabetes. Please either join my team, Alecia’s Stem Cells, as a walker, fundraiser or support me with a donation. It’s simple, fast and fun AND we will of course go out and watch football afterward!  Please visit my personal page to get started.

NYC:  ALECIA’S STEM CELLS NYC

LA:  ALECIA’S STEM CELLS LA

Thank you for your support!

xo Alecia

 

Diabetes Notes… Part 1

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Some diabetes thoughts:

1. Putting a Dexcom sensor in my arm, solo, is definitely doable.  Having gravity work to my advantage to release inserter… maybe not so much.  I watched the amazing Kim from www.textingmypancreas.com and she is so smooth (and bravery/awe inspiring).  Her Arm Dexcom Insertion video is awesome, but for some reason she has better gravity (the gravity in NYC may be broken, but I have not confirmed this).  I get the site inserted (woo hoo) but can’t get the inserter OFF MY DAMN ARM.  Mild panic then ensues (and hopping). I consider going downstairs, asking my doorman to pull the inserter off while I squeeze the sensor sides.  I then wonder which doorman is on duty.  I’m convinced it’ll be the same doorman who told me he was going to faint the time I tripped and came home with a bloody knee. THAT makes me laugh.  Yes, I’m sick in the head.  Doorman horrified and passed out while I greet my neighbors with that barbaric inserter protruding out of my tricep.

Here’s what I’ve realized…having a bra on the bathroom door knob is key.  I use it as a sling shot to release the inserter while I frantically squeeze the sensor.  This manuever may make me either McGuyver or a genius, or someone who needs to straighten up.

2. Speaking of straightening up, if you need to do some Spring cleaning (well in my case it’s more like Summer-Fall-Winter-Spring cleaning), donating your gently worn clothing to a charity, will make you feel good.  Donating to a store that supports diabetes research will make you feel EVEN better (it’s also extremely motivating).  NYers, check-out Cure Thrift Shop. Cool right?

3. Making jokes with fellow DOC friends on Twitter about Dexcom adhesion battles, really will lighten your mood.  It also MAY turn a hassle… into an art project!

Floral Sparkle Dexcom? Yep!

 

Wordless Wednesday – Bloody Diabetic

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I took some photos (I know, weird right?) of the gnarly situation known as Saturday Night Site Change.

Note: This is not the norm for a site change.  The clean-up was ridiculous and I just found blood on my wall 3 days later.  This is why I advocate for diabetes research.  A pump is a great tool, but it is not a cure.

Saturday night pump site change

Not KoolAid. Pump site madness. Oh and the pump is not a cure.

My tummy. Site was working great. Removal of site, not so great.

Diabetes Blog Week (my first real post)… One Diabetes Thing I Do Well

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Today’s Topic for Diabetes Blog Week:

Tell us about just one diabetes thing you (or your loved one) does spectacularly! 

 A few weeks ago I had what I consider a diabetes test.  No, not a test to see if I am diabetic, that test was in the summer of 1979 (man am I old).  No, this was what I consider a test of my internal Emergency Broadcast System.  The whole story is rather graphic and is better suited for another post (later this week) about insulin pumps, X-rays, TSA, and warranties.  Today, I am supposed to pat myself on the back for the diabetes thing I do well.  My “thing” is that in a serious panic, freak the front-door out moment; I keep a level head, and use my smarts.

I was on a red eye flight and unbeknownst to me had a bent cannula under my skin from a brand spanking new pump site (oh and by “bent” I mean like if you took a regular straw and tried to turn it into a bendy straw).

cannula bent like a non-bendy straw

I have to preface this story by explaining I take anti nausea pills sometimes when I fly and for the first few hours of the flight I believed I was sick, not diabetes sick, which led to some of the impending confusion taking care of the situation.  For the sake of sticking to the topic, I will shorten this to the following facts: hours of puking, taking over one of the bathrooms, and peeing my pants.  When my Dexcom showed my BG was in the low 200s, I wasn’t too concerned since I was getting sick (over and over and over) and definitely didn’t want to deal with going low until my stomach issues were under control. I kept giving myself mini boluses (less than a correction) with my pump, my body continued exploding, and I kept noticing my BG wasn’t decreasing at all.  By the time the Dex said I’d reached 300, I suspected I was possibly having the Perfect Storm scenario.

I changed my pump site in a huge rush to get to the airport (yep, stupid) but I didn’t remove the old site as my just-in-case back-up (yep, smart).  So I switched the pump to the old site, bloused and waited (ok “waiting” is a nice way of saying I drank a diet Coke in the bathroom and started puking it out my nose so violently I got a nose bleed).  My BG sort of stabilized in the 300-320 range.  It wasn’t going down though and at that point it really should have.  I had already peed my pants while puking (and made new very scratchy undies out of toilet paper) so my pride was long gone.  Somehow, in my muddled state, I went through my mental checklist of what to do.  I made it back to my seat and grabbed my glucometer, glucose tablets, a new vial of insulin and a syringe (something I rarely traveled with many years ago when all I thought I ever needed was my back-up old pump).

Back in the bathroom, Pukefest 2012 continued but I was able to check my blood… 427! Ack! Dex said 337.  I opened the new insulin vial and pulled the safety cap off the syringe (as a side note: I used to chew on those caps as a kid as I did my shots. I put the safety cap in my mouth for a second, caught myself in the mirror and couldn’t believe in a time of complete distress I automatically did something I haven’t done since I went on my first pump 12 years ago.  What a weird-O).  Anyway I looked over my belly and figured since I was clearly having insulin absorption issues, I should inject elsewhere so I gave myself a mini shot in my belly far from both pump sites (smart) and then another one in my hip (which was a mess with the plane bouncing but I got it… also smart).

I had puked myself silly by the time I was finally able to sit back in my seat for the remaining 45 minutes.  By the time we landed, my BG was in the 240 range.  I managed to keep hydrating myself (small sips and smart) and grabbed liquids on my way out of the airport (also smart since I ended up in NYC traffic for over an hour).

When I got home and cleaned up (good-bye toilet paper undies), my BG was still hovering in the 200s, so I changed out everything with the pump again.  I then called Animas and had them go through any and all diagnostic testing they could do over the phone.  My next call was to my doctor since I still felt like I’d been hit by a bus and then dragged for awhile and high ketones.  When I told her how I’d used the light on my phone to grab a syringe out of my make-up bag, my doctor told me she was proud of me.  She said how lots of people on pumps don’t have syringes on them at all times.  I had been one of those people.  For some unknown reason, in the past year, I started carrying 2 syringes in my travel bag.  So yeah,  I may not be diabetes perfect, but when push came to shove, I was smart.  No wait.  I Am Smart.

A Start

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In the past few months, I have started reading diabetes blogs with an interest and regularity that I never had before.  There are a few reasons for this but the biggest one is I had an interest in obtaining a CGM since I suspected I was having issues with hypoglycemic unawareness and simply put, i was scared.  Blogs became my real world research.  I was approved by my insurance for a Dexcom in December of 2011. I didn’t know anyone, personally, using this technology and suddenly I found myself mildly dependant on T1D blogs.  Other than an hour long training session, EVERYTHING I learned about my Dex, I learned from the world of diabetes tweets and blogs.

The only times I have considered starting a blog were in relation to my career which is NOT in the field of healthcare or diabetes.  Writing a diabetes blog didn’t occur to me nor did it remotely appeal to me.  But then, something changed.  Not all at once, but little things started happening.  My boyfriend gained more diabetes education, especially about the Dexcom through reading blogs, I trained to be a mentor on behalf of JDRF and realized I am old T1D (dx 1979), I was contacted by someone in my professional life with a Dexcom question…. Someone who knew I was diabetic by something I posted on twitter, not by anything I ever told them directly.  A man stopped me on the beach an hour after my boyfriend put a Dexcom sensor in my arm for the first time.  The man was with his 8 year old son who was on an insulin pump too.  When I told him I was approaching my 33rd anniversary with diabetes, he kept telling me how “cool” that was and then apologizing with tears in his eyes and hugging his son.  He told me how encouraging it was to hear and of course tears then streamed from my eyes too. I thought about what a vast sea of fantastic diabetes blogs I had discovered in a few months and that dissuaded me from pursuing any vague notion of blogging.  Nope, I don’t need to blog.  I didn’t think I had anything new to say on the topic.

April 23, 2012 was the day when diabetes managed to scare me silly (although I didn’t realize it at the time) and a few people told me I should write down what happened (more on that later).  Then the turning point.  I saw a post about Diabetes Blog Week and Karen Graffeo of http://www.bittersweetdiabetes.com wrote, “If you don’t have a blog but have thought about starting one, now is the perfect time”.  So I guess, now is my perfect time.