Tag Archives: Insulin pump

A Wednesday That’s Really A Tuesday and a Kardashian Booty

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This was going to be my Wordless Wednesday post but it’s D Blog Check day (thanks Chris) so I’m jumping ahead.  I learned to ski when I was 8 years old.  My college boyfriend got really into snowboarding and we ran around with a snowboarding crowd in the winters during my early 20s (I made a brief switch to snowboarding, broke my coccyx bone, and decided I would remain a skier).  In my early 30s, I skied inconsistently at best.  As far as I can tell, the last time I’d skied was 2008 and I broke my foot in 2009 (unrelated to skiing, tripping in high heels getting in a cab and rushing to the airport… and then wearing high heel platform boots for 2 days before I got an x-ray… woof).  Although I’d talked about skiing again, I haven’t made it happen until this winter.

For the rest of this story, you need to know the following… no matter what my weight, I have a butt.  You know that strange photo of Kim Kardashian where she is balancing a glass of champagne on her derriere?  You know, the photo that was supposed to break the internet?  If not, you may be too highbrow to be reading this blog (or you don’t have interwebs or live under a rock).  I’m fairly certain I could do that Kardashian maneuver AND also balance my pump, Dexcom receiver, my cellphone and a couple bottles of insulin simultaneously on my butt.  Yep, baby got back.

So, “back” to skiing and a big butt.  I have new ski pants this year that are snug in the waist.  Great.  They also swish a lot when I walk so I could never sneak attack anyone.  On Sunday I skied.  I clipped my pump to the back of my pants, with the pump itself on the inside of my waistband.  It seemed firm between Smartwool long undies and my new, loud swishing pants.  I skied my heart out.  I am shocked I got right back into skiing in the past month as though I’d never left and maybe, as I’m in better shape than I think I was 7 years ago, I kinda killed it.

Purple Mountains Majesty!

Purple Mountains Majesty!

As the day progressed, I felt my pump pop off my pants twice as I got off the gondola.  I blame my butt.  I sat down,  the pump got pushed upwards by my Kardashian-esque booty.  When I stood to get off the gondola, my pump had been pushed above the waistband.   Once, it slid down the back of my pants.  Once I felt it loose inside my jacket against my back.  Not cool, but my jacket unzips from the bottom so poles stuck in snow, mittens off, glove liners off, pump re-clipped, velcro on pants tightened, layers adjusted, coat re-zipped, glove liners on, mittens on, poles around wrists.  Whew.  Ski.

Second to the last run of the day, I was flying (well as fast as I could go before my rental skis started shaking because I technically needed high performance skis and believe me, I LOVE typing that.  one more time, I needed the performance package).  As I soared down the mountain singing in my head and strategically shifting my weight and the edges of the skis, I saw something in my shadow.  Something sticking out of the side of my jacket.  Oh, just my lift ticket.  Ummmm no, the lift tickets don’t clip onto a zipper anymore.  The lift ticket is now a keycard you put in your pocket and they scan you with a zapper in the lift lines (this fascinated me as once scanned, the zapper operator would say your name and chit chat.  Lovely). As soon as I realized that strange shadow waving in the breeze was not my lift ticket, I started hitting the breaks.  We’re not talking hockey stop, I hit the breaks in a pie wedge, like a beginner, and the shadow whacked me in the back of the leg.  I scooted to the side.  I stopped. I tried and missed grabbing whatever was in the shadow with my pouffy mittens. I had already tossed my poles to the ground.  I tossed the mittens there too.  I reached again and grabbed my swinging pump.  Whew.  I just stood there thinking that this was NOT the ideal situation.  I then smiled.  I’m fine.  I caught it.  This wasn’t a calamity.  I snapped a photo because based on my maturity, I started giggling to myself that my shadow could be the source of many a dirty joke.  Diabetes is so effing annoying sometimes, but I was absolutely fine.  A little freaked out, but fine.  I was better than fine, I was skiing my heart out.

skipump

So I skied down the rest of the way and thought about what I’d do.  If I’d lost my pump, that would be a horrendously expensive problem, but I could have taken the gondola down to the lodge as I had insulin and emergency syringes in my purse which I’d put in a locker.  If I’d never found my pump, I had a back-up old Ping in my purse too.  I have a photo of my pump settings on my phone.  Inconvenient and expensive for sure, but I’d live and that’s the thing…

I recently had a conversation about the concept that you can never go back.  I’m not sure I believe that.  After all these years, I returned to a sport I once loved as a child.  Oh sure I hated the cold, and carrying all that gear, but the art of skiing was always me in my zone.  My Dad would say he could hear me humming and singing as I skied past him as a kid.  I was always making up my own songs with the theme of “You can do it” (I was a creative, cuckoo little kid).  What if instead of not being able to go back, you take all that stuff you learned, stuff that’s supposedly behind you, you smush it into a ball and you toss it ahead of you?

I think it’s true of diabetes too.  You learn all this stuff, you screw up, you learn, you try again, and you don’t leave it behind.  You use it all to lead you.  You can let it beat you down and God knows I understand diabetes fear, but its also your motivation.  Sometimes your pump needs to smack you in the ass to make you slow down and then, you pull on your mittens and race ahead.

 

Dracula

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I snapped this pic yesterday while on the fly. I switched sites in the morning while packing-up some boxes and had about 30 seconds to myself. I left the old site in… Just in case.  Hours later the old site started to bug me (also note, my skinny jeans were feeling snug, I was moving around a lot and the old site was simply annoyed). I pulled it out and immediately saw the blood. Oops. And after putting a tissue in the waist of my pants, checked the cannula.

Eek!

Hello there vampire!

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I snapped a pic. I thought the pic looked kinda of cool (interesting angle, decent light).

Vampires really do exist!

 

JDRF Meet-up & Tandem

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Last night the JDRF Metros group met at a bar/restaurant and got to do a Q&A with our local Tandem T-Slim pump rep.  As much as I have read about the T-Slim and know people who have it, it was extremely informative and very cool to get to play with the actual pump a bit.  A few items of note (well for me and these are in no specific order, just how my mind recalled them):

  • I got to grill the rep on the finances of the company.
  • I did not realize that the developers and financiers are from the same company that created Symilin.  I had a horrendously BAD experience on Symlin.  Like really, really bad.  Like dangerously bad.
  • To my objection that there is no back-up battery for the T Slim (it’s rechargeable which scares the shirt off of me after losing power for 6 days during hurricane Sandy), the rep suggested getting one of those mini portable chargers you can get at the drug store (they take 2 batteries).  Almost like having a portable battery back-up, I guess.
  • The charging time for the T Slim was much shorter than I thought and it does NOT need to be almost drained before you charge it (like old cell phones).
  • I was impressed by ALL of the features that make the T-Slim advantageous to other pumps while on airplanes (cabin pressure issues).  I found this part super interesting (and although I didn’t totally understand it, the differences in the venting system were cool… get it?  Venting?  Cool?  That’s 3 cups of coffee making these jokes people!).
  • Alarm for the pump getting too hot and possibly compromising insulin.  I think I’ve had this issue in the summer months and this is an advantage to me.
  • FONT:  On some of the screens I found the font a bit small (and I was wearing my glasses).  The font size can’t be changed.  Insert bigger-is-better jokes.
  • Cut off: If a piano fell out of the sky and landed on me, I’d probably have problems far bigger than my pump getting crushed.  The maximum amount of insulin I ever have in my pump is approximately 110 units.  My total daily does ranges from 18.5 to 24 units a day.  According to the rep, if my pump were smashed, I could possibly get injected with 110 units at once.  I’m fairly certain 4 days of insulin all at once, could be the end of me.  With the T-Slim, due to how the reservoir works, it would apparently be impossible for it to give all the insulin at once.  I didn’t totally get that part but weird stuff falls off NYC buildings all the time so safety is important.
Incredibly dark space. We used flashlights on phones to snap this pic.

Incredibly dark space. We used flashlights on phones to snap this pic.

  • I think reps believe we all want to hear that a company isn’t in it for the money.  Tandem just made their first profit this previous quarter.  That doesn’t sell me.  I want a pump from a big profitable business.  I want to know if something goes wrong, they can afford to fix it.  I also want to know a company is investing in “what’s next” all the time.  I want to know they can afford the patent process.  I want to hear they have lobbyist.  This DOES not mean they can’t handle these issues, but there is a comfort to ME knowing a company like Johnson & Johnson is diversified and not just making one product.  Yeah, I’m a nerd but a pump is a huge investment and something we need to rely on completely.
  • When statistics are rattled off to me about a pump having larger growth (in the market place) than any other pump available, I think to myself “No shirt, Sherlock”.  If your pump is brand spanking new, your sales figures (percentage) started at zero.  If your growth percentage is NOT the biggest, you’re in big trouble.
  • Sitting in a bar with 4 other young women learning about the T-Slim from a rep who demonstrated from both from a T Slim pump and from his IPad was interesting.  Occasionally I would forget where we were, look up and see guys staring from the bar.  Gotta wonder what they were thinking.  A bunch of ladies pouring over some sort of technology sales presentation in a loud and very dark bar.  Sexy, smart?  Or weird and possibly illegal activity going on in the corner?
  • I was impressed that the rep sat there for 3 hours answering our questions (and he ordered food but never got to eat it).
  • Another item I appreciate is that the basal rates go to the thousandth decimal point.  That was a factor in my Animas pump decision.  My regular weekday basal rate runs at .425, .475, .600, and back to .475.  I think that those fractions are helpful for me.
  • The Tandem rep is not T1D, but has members in his extended family who are.  The NYC 1/2 Marathon is this Sunday.  There are 33 runners on the JDRF Team.  This rep is one of them.  Does that make me like the T-Slim more?  Yes.  Should anyone be using this logic to make a decision about a pump?  No way.  I do however think (to me), it gives the T Slim a bonus point.
  • I am not due for a new pump any time soon however I would consider the T-Slim much more than I would have before.
The worst photo ever taken. No, I was not in a moving vehicle.

The worst photo ever taken. No, I was not in a moving vehicle.

Wordless Wednesday… But…. errrr Butt.

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This is NOT the face of diabetes, but rather the butt.

The butt on the beach.

The butt under an umbrella.

diaface

 

 

 

 

 

 

 

 

The butt (and the rest of me) being VERY fortunate on a spur of the moment weekend getaway.

There is also a thigh of diabetes with a Dexcom G4 sensor on it.

The sensor had 3 heart rhinestone stickers to jazz it up.

The thigh of diabetes was too busy getting some sun to pose for pics.

 

Kicking It in NYC

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ASC sign1Let’s face it, I’m really not sure there will be a cure for Type 1 Diabetes in my lifetime.  I do know though, I will absolutely be part of finding the cure for Type 1 Diabetes.  This dream, idea, vision of mine has grown with intensity as I’ve gotten older.  I’ve been a T1D for 34 years.  That’s a long time.

I became involved with JDRF, because of my parents.  JDRF was their calm in the storm after I was diagnosed in 1979.  JDRF was still in its infancy at the time, but now stands the largest charitable supporter of T1D research.  JDRF and the families my parents met, managed to give my family HOPE.  My parents passed this HOPE along to me.  At 6 years old, my parents showed me what it’s like to pour your self into a cause and to BELIEVE. (check out my Mom’s 4-letter word)

In 2001, I founded Alecia’s Stem Cells in New York City with a tremendous amount of help from my friends.  A lot of things have changed in my diabetes world since that time.  One thing that hasn’t changed though is that our team is still based on friends and family who are willing to sacrifice their time and money (and often lend their creativity). They too will BE part of the Cure.

asc dodgeAlecia’s Stem Cells has had teams walk in Queens, Manhattan/Brooklyn, Boston and Los Angeles.  Our team has raised OVER $200,000 towards JDRF’s mission to cure diabetes by funding crucial research!  This is incredible and this is because of YOU!  YOU too are part of the CURE.

 

This past November, I was asked to speak along with Michael Strahan at a JDRF NYC Fundraiser.  It was a fun event but most importantly, it gave me a chance to share my view.  I got to tell parents of T1D kids about my story.  How I’ve been diabetic for 34 years, about how I DO understand how they may be angry that there isn’t a cure yet, but how I am proof positive of how technology has changed and is advancing diabetes care and treatments.  I told them how I envy their children. I told them that the glucose monitors and insulin pumps I use along with their children simply didn’t exist when I was their child’s age.  I told how to check my glucose levels,I would pee in a cup and add some chemicals and that gave a glucose “range”.  THAT range that was flawed.  I showed off my Continuous Glucose monitor that I wore on my arm.  I explained how these technologies are not a cure BUT they are advances.  They are advances that come from critical research. Research is the key component of JDRF.

This June, I was honored to be voted to the Board of JDRF NYC.  At the same time, I also became the Coordinator of JDRF’s Adult Type 1 Group.  Both of these opportunities will hopefully enable me to take another step in my NEED to make a difference.  Government advocacy and peer-to-peer support?  Yes, sign me up.  There’s a third part to this news though.  I consider it my diabetes TRIFECTA.  I’ve started the process to participate in diabetes clinical trials.  Maybe Alecia’s Stem Cells should be Alecia’s Lab Rats?

So one last thought, I’m 40 years old now.  I think about how someday I won’t be here anymore, but hey, none of us will.  I wonder what my legacy will be.  I hope that my nephew and soon to be either niece or nephew live healthy and happy lives and have families of their own.  Maybe they will mention me as their creative aunt.  I HOPE they remember that I always followed my heart.  I REALLY HOPE they never have to worry about T1D in their own children.  I HOPE that someday they talk about how their aunt had a friend who told her one time that there are two types of people… victims, and ass-kickers and their Aunt Alecia was an ass-kicker and yes, she helped cure diabetes.

I am not willing to sit back and wait for change.  I will be part of it.  Be part of it with me. Grab your sneakers and walk with me.  Walk for the other 3 million people in the US who are also fighting T1D.  Walk for hope. WALK FOR MY HOPE.  Support our team. CHEER US ON!

You can join and/or support Alecia’s Stem Cells at: http://www2.jdrf.org/goto/AleciasStemCells

Xo,

Alecia the Ass-kicker

WALK 2012 - Brooklyn 1/2 way mark

Updates, Cussing and Such

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Busy, busy, busy so a quick update (also I have another post after this one):

  • I never finished the post about my eye doctor appointment.  So here’s the short summary.  I am fine.  I took lots of pics at the office.  I was there for HOURS.  Is anyone losing sleep at night because I never wrote the down and deep about my eye doctor appoint?  No?  Okay, let’s move on and I’ll get info together for another time.
  • I read this earlier today:  “To strengthen the muscles of your heart, the best exercise is lifting someone else’s spirit whenever you can.” – Dodinsky.  Do Good, Feel Good.

    Brooklyn heart

    Found on Sunday in Brooklyn Heights

  • My ongoing issues with my pump sites going bad immediately after inserting and blood bath moments in my bathroom have remained but I have had 2 good sites in a row so that’s encouraging.  The discouraging part is my insurance won’t budge on my allotment of sites.  I went through 6 in a weekend.  I will be completely screwed towards the end of this 3 month prescription and forced to either leave in sites too long or switch back to shots.  No way Jose.  I’m an Inset kinda girl.  I like awesome packaging the doubles as the inserter.  I like pink and blue sites (I’m totally anti green though.  TOTALLY).  Today I was able to try out the Inset 30.  Things have changed since I used the equivalent version (Silhouettes) back in my MiniMed pumping days.  Although the needle still looks obnoxiously rude (like it’s going to spew curse words I’ve never even heard at me), there is now an inserter.  Yeah, I was nervous putting it in but not that pale, sweaty way that used to happen as my hands shook back in my manual insertion days.  It’s funny though that just looking at this new (well new to me) site took me right back to my first NYC apartment and pep talking myself as my hands shook trying to get those damn sites in.  So, I am currently wearing my old blue Inset (I can’t risk another blood bath at work.  Mint green pants and a white lace shirt SO does NOT go with my ruby red blood).  I also have my Dexcom on my tummy.  I am one hot stuff robot lady today.  Woo Wee. (I can’t show the Dexcom because  I’m keeping SurfaceFine PG… well for today). 

    2 sites. 1 tummy.

    2 sites. 1 tummy.

  • I have finally finished my JDRF Walk letter.  I wrote an earlier version that I tried out on a few people last week.  It had one of 2 reactions.  It either made people cry, like really cry and hug me or TOTAL radio silence.  Like no email, text, IM silence.  Oh well.  My new letter is a bit long but it touches on what I think is important.  Once I clean it up a bit, I’ll post it here. 
  • I need to stop cussing so much.  I’m not sure if this is diabetes related or not.  F*ck Diabetes?  Yeah, totally diabetes related.  Oh and PG is over now.

Birthday Vacation

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This past week I was on vacation to escape my birthday (which I spent most of, yesterday, on an airplane). Below are my vacation contributions to #wherethepumpareyou which is a Twitter thing where you photograph your insulin pump in a location. Both my insulin pump and I had a great and active vacation.

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Photo Week in Review

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From Top Left: Another pump site, another bruise.  This was earlier in the week but I had a site change this morning and once again… another site, another bruise.  This is starting to become my norm.  Site worked great though.  At least the bruises are small and this isn’t bikini weather!

Blood glucose check where an old pricked spot bleeds along with the new one.  there’s a cartoonish like quality to that, as if I will drink a glass of water and my (bruised) pump sites will look like a sprinkler.

New diabetes themed-used-Verio IQ-test strip jewelry.  The reaction this from the non-D crowd has been kind of awesome.  love hearing what people “think” the material is.  My account (T2) took a minute and guessed it correctly.

I woke-up on Thursday to this view.  Remote control, Glucolift (Wildberry is my fave) container (empty), Dexcom G4 reciever, Froggie, and my pooch (with creeptastic looking eyes in this pic).  A strange Wednesday night snuggle-fest indeed.

 

Egg And Toast Please

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This morning I stopped by my office building’s cafe to grab some breakfast, my standard, multigrain toast and a hard-boiled egg.  Today I am wearing a black sleeveless dress and amazingly, (see pic from yesterday’s post), my fauna decorated Dexcom still looks perky after a shower (shocking, I figured it would dissolve). The Dex in my arm doesn’t seem to ever blend-in but the contrast today seems more significant.

The woman behind me in line asked, “What’s that on your arm?”.

Me: “Oh I’m diabetic and it’s a continuous glucose monitor so it shows me blood sugar trends” (pointed at Dex receiver on top of my phone on counter).

Lady: “Oh my friend has diabetes but he has a…. ummm…” (pointing to her hip).

Me: “Oh an insulin pump.” I grab my pump thru my dress, attached to underwear so she can see the boxy shape on my hip.

Lady: (looking confused). “Oh his pump takes care of everything, he doesn’t need anything like that” (pointing to my arm).

Me: “Yes, the thing in my arm gives me glucose readings.  It helps me make decisions with the pump and alerts me if my glucose is too high or too low.  It’s a new technology that’s been really helpful for me.”

Lady: “The only problem he has with the pump is if we go to the theater and it goes off going through security, but otherwise it takes care of EVERYTHING.”

I’ve decided I MUST find this theater loving man with a pump that takes care of EVERYTHING.

This week has been filled with incredible BG frustration (and yes I am still taking +10% to +20% temp basal & multiple corrections per day with mild success).  I got in the elevator and felt angry.  In my moment of anger and frustration, I thought how much I would like to smack the man with his pump that takes care of everything.  He has done a disservice to me and many others like me, letting this woman roam the earth thinking that his pump is a cure and its biggest frustration is that it sets off a metal detector sometimes, you know, at the theater.

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.