Category Archives: diabetes education
A Frozen American Girl (give away)
*PLEASE NOTE: THE GIVE-A-WAY PORTION OF THE POST BELOW ENDED ON 1/6/16… the frozen shoulder is starting to get better, or shall I say “thaw”? Thanks!
I keep starting and stopping a post I’ve been writing about how I was diagnosed with Frozen shoulder a few months ago. It’s another bizarre complication of T1D and I did not have an easy time getting it diagnosed (2 doctors thought it was a partial tear of the rotator cuff although I suspected frozen shoulder but they thought I had too much mobility for it to be frozen), 3 failed MRI’s (it was impossible to keep my arm still at that weird angle for so long), and the absurd amount of time I had to wait to get into physical therapy (insurance, referrals, etc). 2 things seem to have accelerated the “freeze” this past Fall… I started boxing again and the trainer kept having me do push-ups on a strange angle and the fact that I ride my bike in Manhattan and have to keep reminding myself to loosen up and hold my shoulders down (I suspect I ride looking like I’m holding on for dear life… because I AM).
Due to this insurance mess, this morning was my last session at physical therapy. I still have more sessions to go (pre approved) but can’t use them since my plan is being discontinued (12/31) and will have to start this process all over again next month with new insurance. GRRRRR.
This week I received a return check from a deposit I had to put on my home many, many years ago. I was quite surprised and decided 1/2 would go to something special.
When I left physical therapy this morning, there were police barricades every which way and I was redirected to walk across Rockefeller Center. Big tree, tourists a’plenty, and my path blocked. There were hundreds of officers standing in line on 5th Avenue. Today was the funeral of NYPD Detective and Air National Guard technical sergeant Joseph Lemm, who was killed by a suicide bomber last week in Afghanistan. It was another reminder of just how short this life is, as he leaves behind a wife and 2 children. When I finished navigating barricades, I was standing in front of the American Girl flagship store which opens at 9am (surprise).
Yesterday my social media newsfeeds and emails were inundated with postings about how The American Girl Company had released a diabetes care kit for American Girl dolls. So, for the first time in my life, I walked into an American Girl store (holy smokes, kid culture shock), and asked for the diabetes doll stuff. Yep, they had it on display. It includes:
Diabetes storage case, ID card, medical bracelet, glucose monitor and lancet device, glucose tab container, an insulin pump, an insulin pen, some stickers, adhesive disk, and a log book.
I did not cry in the store since I was still shocked I was there and have also never understood American Girl dolls. These dolls weren’t around in my time (I was all about Barbie) but my sister had them. I always thought they were focused on historical periods which confused the heck out of me because why would Kit from 1934 be hanging out with Samantha from 1904 and why would either of them have inline skates? Made zero sense to me.
This morning, I learned that there are a TON of these dolls and the American History dolls are just one part. Kids, well parents, get the dolls to look like the kid. They have a whole resturant in the store where people go to have tea with their doll. Kids have birthday parties and all bring their American girl dolls along… and NOW that kid with T1D, can have accessories (a whole kit) that gives their doll the very same devices they use to manage and thrive with T1D. Yep, no tears until right this very second. I never grew up with an insulin pump and blood glucose meters came later in my diabetes days (I = Barbie playing dinosaur) but I did play a heck of a lot of sports. American Girl dolls have a zillion sport accessory options (A ZILLION) and NOW they have diabetes equipment options too. Amazing. Truly Me!
I took home deposit money and bought some American Girl Diabetes Care Kits and then I did what any grown woman would do after being a kid in a toy store… I called my Mom. Although she was flabbergasted that this diabetes equipment exists for dolls, she was more surprised that for all these years, I’d thought American Girl dolls should have been called Time Traveler dolls.
I now have 6 American Girl Diabetes Kits to GIVE away and my Mom suggested I give them away right here. So in the comments, please tell me why you would like the Care kit and my Mom will pick out the winners (and I’ll notify you via the comments section by 1/6/16 and I will pick-up the shipping. Shipping outside of the US will take a bit longer though).
I ask one thing in return though, that you pay it forward.
On the other side of Pain is Wisdom. xo
And for more information on how this American Girls diabetes care kit happened check out this story from the LA Times.
What’s New (The Preview)
A few items:
1. Recently someone told me how they find it easier to manage diabetes without working out. Exercise makes their BGs bounce around. I agree with the bouncing. I get it. Where I disagree though (and I can only speak for myself), is exercise makes your body and mind stronger. Exercise keeps your blood pumping and I LOVE, love, LOVE that I have a strong pulse in my extremities. Exercise is a good stress reliever (even if I stress about my blood glucose levels while I exercise). And the most important part for me (currently), is there are days when I feel like I have zero control in oh so very many areas of my life (sometimes read: ALL AREAS). Exercise is O N E area where I have some say… making the time, making exercise goals, achieving a goal. My “mantra” (thanks Stacey for reminding me) is Do Good, Feel Good. I think when it comes to exercise, this applies to one’s own body too:
Do Good For Yourself, Feel Good About Yourself.
Now when it comes to the BG bouncing, I get it. Saturday is my JDRF Jamaica, Queens bike ride. I believe I am getting a loaner bike. Yep, 20 miles in an area I have never been on a loaner bike (I hope it’s not a beach cruiser… I’ve heard they are not ideal… ha). Tonight I rode again at the gym. I played around with the screen and ended up with some sort of video of a path in a Northern “pocket” of California (pocket was their video screen word, not mine). The video kept changing. It may have made me nauseous. I believe the videos are for running because the path turned to sand on the beach right up against crashing waves. Biking in the sand? That “may” be out of my reach. Then I became the smirking girl on the bike. Could be worse. I am far from riding in the woods on paths of roots and dirt as learned when I wanted to hit the breaks before the log going across a creek… yikes.
The photos below are what happens when you take pics from a moving vehicle…. oh, wait, I was on stationary bike. You are viewing paths (and a log I had to dodge) and a Dexcom screen. What you can barely see is the Dexcom down angle arrow and a BG of 128.
I had reduced my basal by 40% for 30 minutes which started 10 minutes pre-workout. I thought it was a HUGE success when I finally stopped dropping at 82 YAY!
I made dinner, and after bolusing and eating, I started dropping again. Bummer. And then treating a low after I JUST had eaten was less than ideal, BUT every workout isn’t like this and hopefully Saturday will be a smoother ride. Get it? Ride? Bikes?
2. I love seeing and hearing so much publicity around Miss Idaho. Rock on Sierra and #showmeyourpump Out of all the mainstream press I’ve seen though, this article from Bustle is my fave (EXCEPT the part that describes an insulin pump as “an aid that controls her diabetes”… oh how I wish that was true…. but more on THAT on THURSDAY). Would “Helps” Control, make it better?
3. I’ve gotten a lot of information about this whole putting your Dexcom on the Cloud stuff (cool pics ). I haven’t looked much into it for 2 reasons: 1. Time is a little tight right now and 2. There is no one in my life who would want/need/be aided by seeing my Dexcom readings in real time. I will say though, I can see how this is immensely helpful to parents of T1D kiddos and like Kerri said, her husband and Mom can check on her when she or they are away. At some point, I will look into this further (although I suspect/expect this to be COMPLETELY over my head since I can’t even delete emails off an iPhone… they just keep coming back). Having my Dexcom readings on my wrist or phone would be cool. There is a fascinating Facebook group for this technology CGM in the Cloud . Cool right?
4. I caught this earlier tonight (post bike ride lows). Dating and Diabetes. I have spent a solid year avoiding this topic. I feel my stories could be discouraging and I want to encourage, not discourage… and then I feel incredibly torn on the entire topic, my feelings and my experiences. Sigh. Briley at InDpendence tackled it a bit tonight. I truly applaud her bravery.
5. I had a #5 item but for the life of me, I can’t remember what it was #OldAndTired
Did you read the OUCH post? Did you know its National Volunteer MONTH (not just week)?
- It does sadden me a bit to hear JDRF LA is looking for volunteers to help at their Gala (I would think they would inundated with volunteers but then again, I am a dreamer) . I’ve worked at this event twice but won’t be in town for this year’s event. Trust me, its definitely a do good, feel good experience, highly inspirational plus lots of celebrity sightings and cute puppies (who doesn’t like cute puppies?). Info: Calling all volunteers!! We need your help at the Imagine Gala on May 3rd. For more information on times, location and roles click the following link. Send your completed form by email to firstname.lastname@example.org or fax to 213-622-6276
- Sara over at Moments of Wonderful is the Las Vegas JDRF Chapter’s Volunteer Manager and they also happen to be looking for volunteers! You can contact her at: email@example.com
- The Diabetes Scholars Foundation has a whole list of scholarships available to incoming freshman to a four year accredited college, university, technical or trade school. Look at these scholarships and its only one application to apply to a multitude of scholarships! Check this OUT!
I have a pretty high tolerance for pain (that doesn’t mean I won’t complain incessantly when something hurts). I’ve been taking shots a long time (and they were WAY bigger when i was a kid), inserting pump sites and Dexcom sensors for oodles of years. Why then, is today the day that my left ring finger tip hurts so effing much from a finger stick? It’s almost comical in the realm of physical pain that typing is killing my damn finger and I keep wincing in pain… like a VERY angry splinter.
Such a teeny red spot/ bruise. Sometimes it really is the little things that sting the most.
A bruised finger has me thinking about how ready I am for the next level of technology and ultimately, someday, I hope, a cure. I think about how I speed packed this morning to get out of town for a few days. Picking out what to wear today not based on weather or comfort, but what will keep my pump most accessible going through security at the airport and how I should have moisturized my legs as I may have to drop my pants to show of my thigh Dexcom site but at least I’m wearing my lucky heart undies.
I write this post to bring up a point near and dear to my heart (oh and to complain a bit)… This week has been National Volunteer Week (tomorrow is the last OFFICIAL day).
GO. DO. SOMETHING.
No really, go. Volunteer to help JDRF. Local chapters are always looking for people to help out. It’s not about donating/raising money (although that is indeed important). Encourage a non D to volunteer with you. Believe me, it’s not always easy, but try it. Spread the word. Do good, feel good. Figure out your talents and volunteer them. Give your time, your ideas, your heart and most importantly, your passion.
It is time. GO!
PS If you are looking for something to do…Alecia’s Stem Cells is ALWAYS looking for walkers, sponsors, social media pushers, friends, competitors, cheerleaders, huggers…. more info about ASC in the next few weeks.
Advocacy With A Rhyme
A few weeks ago I was asked to do a Q&A with 2nd year medical students at (it rhymes with) Mt. My-Oh-My (medical hospital and school). Yesterday was the day. I was given very little information other than this was part of the teaching program and my doctor needed info about my T1D diagnosis (June 19, 1979). I was also told to be prepared that the students may ask some “weird” questions. Weird you say? Hell to the yes, count me in!
I ended up being 10 minutes late to the meeting spot with my doctor. I full-on ran from the subway to the hospital (I despise being late). Taking the subway during the conclusion of the St. Patrick’s Day parade was a lesson in madness. Out of breath, my doctor also a bit frazzled, I was led into the auditorium. My guess is there were about 300 students. There was another doctor presenting an older woman (dare I say elderly?). I had missed much of her presentation but as I made it to my seat, I caught that she is a fellow T1D and her doctor was giving different facts about her and asking the students what tests should or should have been performed under specific circumstances. After sprinting to the hospital and my heart pounding in my ears, I found it a bit jarring that Cutie Oldie T1D was asked to go into detail about when she had a UTI while on vacation a few years ago. Holy Shirt, things got graphic FAST. Cutie Oldie T1D spoke about getting a stent in her kidney for 3 weeks and how much it hurt to pee…. (get ready to gag or skip the next few words)… and she was peeing…puss. BLECH. Why did I agree to this AND what the hell was MY doctor about to say about ME?!?!? I frantically searched my brain for gross medical stuff I might have to talk about… oh this was NOT good.
My turn. I sat in a desk chair in front of the 300 students. My doctor struggled to find her PowerPoint presentation. I hooked up the mic to my sweater dress. No turning back now. A sea of students. I was the last part of the presentation. Lots of yawning faces staring at me.
I looked back at the screen. There was the paragraph I’d written about my diagnosis. My symptoms, local hospital where I went for blood test, my pediatrician telling my parents to take me to “the best” and sending me to Hahnemann hospital in Philadelphia. My doctor got into some specifics about the diagnosis that were not part of my story but relatively universal in many diagnosis stories. Then, “Does anyone have any questions?”. Ummmm that’s it? 2 questions about my diagnosis. Yeah, I was 6. I explained I’m about to turn 41 and I am too old to remember all the specifics but I was able to tell them some of my memories and then I was off and running.
I’m a talker. I had the floor (well chair). I started answering stuff no one was asking. My doctor threw in some questions and explained things like Regular insulin and NPH. Before I took my seat, I had heard the doctor who was running this program tell my doctor to take her time presenting because we were ahead of schedule. Too bad you let me hear that lady, because I will fill up this whole time slot…. and boy did I.
My doctor showed an image of some of the insulin pumps on the market. I pointed out the one I have and then it happened. My doctor asked if I would be comfortable showing the students my insulin pump. Ummmm. I said how I probably should have worn something different. My doctor then noticed why I said that. I was in black boots, black tights and a grey/green sweater dress. Pump squished to my thigh IN my tights. She said something about how she should have mentioned that to me earlier and I thought, “To hell with this”. I stood-up, turned to the side and saw a woman shaking her head “No”. Too late. As the words came out of my mouth I just couldn’t stop them…
“You guys ready for this presentation to get REAL racy?” and there I was with my sweater dress hiked up on my left hip while I traced the outline of my Dexcom on my thigh and my pump right next it. I showed how I could move my pump around because my tights were holding it in place but that the Dexcom was fixed in place. I talked and talked, looking damn flashy but knowing, this was a true chance to educate and I had EVERYONE’s attention.
I told them about how much I’d agonized for 3 years about getting a pump. How, like so many other T1D’s, I wish I’d done it a lot sooner but that my advice to them, if they ended up in endocrinology, was not to force a pump on anyone. Plant the seed, water it, show it some sun and then see what happens. I needed to want a pump on my own. I had to deal with my own issues of being attached to something, and my own issues of self consciousness, and meeting other people using technologies (especially Dexcom). On and on I went. I told them about how important it is for me, the patient, to work with my doctors like a team.
My doctor told them about the benefits of insulin pumps and different types of boluses. How a square wave bolus works and and I explained to them my enemy… pizza.
And then the questions… Someone asked about the psychological impact of wearing a pump. Alleluia! So I explained how I’ve had a pump for 14 years and how amazed and hopeful I am when I deal with kids, many times they are not diabetic and how they will tell me there is a kid on their (insert sport) team who has a pump too. He/she is diabetic. That’s it. They NEVER, EVER see it as a big deal. That it’s the parents of that kid who are more likely to see it as a big deal…. so-and-so’s kid is diabetic and HAS TO BE ON A PUMP. I told them my belief that these generations beneath me, live in a different, much more open minded world and they (the doctors) can help foster that.
I told them how it is hard dating and being in relationships. I can control how I present information and why I have an insulin pump but I have zero control over someone’s reaction to it and that can be hurtful no matter what age you are. How I have no control over the internet and when you Google diabetes it isn’t a pretty picture. How I look like the picture of health most of the time. I am in the best shape of my life right now, but people think my being diabetic could/will mean I will go blind, have all my limbs amputated and will die when my body can no longer handle dialysis.
More questions and more screens of the Dexcom. I explained how the Dexcom is a Godsend for me. That I live with a dog who is useless in giving me glucagon or getting me carbs. That I don’t always feel myself go low in my sleep and sometimes I manage to sleep through the Dexcom and how I feel “lucky” when ‘i see the graph the next day. I poured it all out and how freaking scary being alone and treating a low can be. My doctor explained the Dexcom arrows and I gave them my real world reactions to those arrows and how they are my very personal warning system.
I told them how I hate admitting it, but that I worry every single day about what this disease is doing to my body. I workout like crazy because it makes me feel good, it reduces stress, and it is keeping my heart and circulation going BUT it is a battle to keep glucose levels in my target range with exercise. I told them how frustrating this can be and how quickly the workout “high” fades when battling a dropping or rising blood glucose level. I explained that there is a ton of trial, error, doctorly pointers and glucose tabs that dissolve in the wash in my gym pant pockets.
I ran out of time. There was applause. My voice felt scratchy. Student thanked me as I walked from the stage. Before I left I thanked them for listening and to please become GOOD doctors. I was smirking. I couldn’t hide it. I took that presentation in a different direction and I flooded them with stories and information. I shared my passion.
My doctor walked me out and informed me that 3 people in the class are T1Ds and another 2 students have siblings who are T1Ds. She thanked me for getting a discussion started. I’m not sure about the discussion part (it was the end of the day on St Patrick’s Day) but I did feel like I did my thing.