Sunday, September 10, 2017

Fundraising x3 and a $5 Ask

Fundraising for 3 organizations at the same time IS a little challenging, but I've never been one to not try to do something because it was difficult.  There are so many people in need across the country due to weather, that it has become understandably harder to raise money for things that aren't emergency related.  However, I'll keep trying, and here's why.

Each of the three organizations I am raising money for has had a positive impact in my 40-something year career with type 1 diabetes, and that's why I'm doing what I'm doing. I hope that after reading the stories you might be inspired to donate $5 to one of the three.  Every penny really does count, and no donation is too small.  $1 can make a difference!

Camp Nejeda Foundation:

There are so many reasons I loved attending diabetes camp.   I was surrounded by people who "got it" and understood immediately what I needed not just the medical staff, but the counselors and other campers as well.  Camp Nejeda is also where I started to formulate my diabetes-self, the stepping stone to how today, so many years later, I still associate myself with my disease.  It was at Camp where I learned skills to handle the emotional and psychological impacts of living with diabetes.
Camper cabins at Camp Nejeda

The magic of diabetes camp didn't end when I stopped going.  The friends and connections I made then are my friends for life   Thank goodness for social media and email  both help to stay in touch and getting support so much easier than sending a letter in the mail (though I do miss those days!)

More recently Camp Nejeda has understood that until there is a cure for type 1 diabetes, adults with type 1 need support as well.   I have been working with them for the last 3 years (and planning for 2018) on the Camp Nejeda Survive and Thrive Bootcamp weekend for adults with T1D - a weekend filled with education, support, and fun, for adults 18+ (see 2017's program:

Fundraising link:  ($280 of $800 left to raise by September 25th)

MiniMed 670G

Where do I start with JDRF...?  When I was diagnosed, there was no 'R" in JDRF. It was JDF - Juvenile Diabetes Foundation.  The research they are working on is not only for the cure, but the prevention of diabetes, and equally important, better treatment options for those of us with t1D today.
I can't begin to adequately do justice for all they are involved with, but I can tell you how important it all is, and how important donations are to keep it all going.  They were even involved with bringing the MiniMed 670G hybrid closed-loop system (the one I'm using) to market! And they've helped many other of the diabetes tech companies as well!  

Fundraising link:
 ($620 of $2,500 left to raise by October 1st)

American Diabetes Association

Last but certainly not least, is the American Diabetes Association.  Until recently, I haven't had much involvement with the ADA. That all changed in 2015 when I broached the subject with them about local events for adults with type 1 diabetes.  They were game, and we worked together on a handful of events over the last few years.  I have also have (slowly) become involved in government advocacy through them.   The adults with type 1 programming is on hold due to some restructuring but I do hope to bring it back.  Fundraising link ($215 left to raise of $250)

There so many deserving organizations that are in need of support from us, I know none of us can donate to everyone.  But I am asking for you to consider a $5 donation to one of the organizations above.  Just think - if all of my connections were able to do this, I'd have the remaining $1,510 raised in no time!  Many thanks to those who have already donated, and have supported me in other ways.  Much love to you all! 

Tuesday, August 8, 2017

Yesterday: Diabetes & Exercise Phyllis 1, diabetes 0

Yesterday I had a longer than usual afternoon at the gym by design, and that proved to be a bit challenging around blood glucose levels and insulin dosages (bolus, with an insulin pump).
From 5:30-6pm I had personal training. THe workout was hard and left me a hot and sweaty mess. Sign of a good session. I planned earlier in the day to go to a 6:30 Zumba class, figuring the 30-minute break would be good.
The trouble with this plan is I wasn't sure how to set my exercise insulin basal rate for that length of time, with a rest in the middle. Typically I'd start it an hour before a work out of any type, and end it half an hour before the exercise class was due to end. But that didn't fit into the scheduled. So I decided not to set the exercise basal rate.
My blood sugar was 197 after training which was a bit high -- but I didn't want to do a correction bolus (dose) of insulin because that insulin would still be going through my system during Zumba. The problem with that is this insulin would cause my blood sugar to drop fast during the cardio work out since the cardio would cause my body utilize the insulin much more efficiently than if I weren't exercising.

Add to the equation that I also needed a small snack between the workouts for energy.
I decided to have a protein bar, for which I normally would have dosed insulin. I took an educated chance and didn't. 15 minutes into Zumba my CGM beeped high (still 197, but not going rising. At minute 40 I checked my CGM and it displayed 140 with a down arrow (dropping somewhat fast). I was determined not to let diabetes win. I slowed down my pace, I stopped arm movements which decreases intensity, and took smaller steps.

I finished the class with a sensor glucose reading of 110. I felt triumphant that I won! It's a somewhat small victory, but an important one for me.

Educational moment: For me, insulin and food near exercise can be 2 of my biggest challenges with diabetes management.

Usually, I set a temporary insulin rate on my pump to try and keep my blood sugar around 150, slightly higher level to help mitigate some of the obstacles I experienced last night, but for whatever reason, I didn't do that last night.

This is one of the many reasons I am hoping to raise $2500 for this year's Boston JDRF One Walk About 55 days to go to raise $1500! Donations of any amount - $1, $5, $10 are very greatly appreciated! Link to fundraising page:

Thursday, August 3, 2017

Diabetes Messaging Can be Confusing

As we enter diabetes walk season the north east, and I ramp up my own fundraising efforts for JDRF, I can't help but stop and think about my own mixed messaging with regards to how I talk about living with type 1 diabetes (T1D)

On one hand I have mantras "diabetes doesn't' stop me"  or "diabetes strong" and the like.  But then during fundraising season I find myself switching gears and talking about how hard it is, and how much we need a cure and better treatment options.

Which is it?  Is it hard and difficult, or does it not stop me?  It's both.    No matter how you slice it living with diabetes is hard, and it stinks. However in order for me to thrive despite this disease and all it has to offer, I try to live in the present and not dwell on the hard stuff but get through it and move on.

Maybe my mantra should be "diabetes may slow me down, but doesn't stop me from accomplishing my goals"  but that is too long for a hashtag, don't you think?  #diabetesmayslowmedownbutdoesn't stopmefromaccomplishingmygoals.

I hope that clears up a little of the confusion and answers this question that has been asked of me more than once.

Side note: this year I'm hoping to be able to raise $2,500 for my JDRF fundraising efforts.  A cure may be a long way away, but researchers are working on ways to prevent it,  quicker insulin, and so much more that helps us all today util that cure comes, and JDRF helps fund a lot of that.  

Friday, May 19, 2017

Diabetes Blog Week Day 5: More Than Diabetes

Today is the last day of Diabetes Blog Week, ending with a great prompt: More than Diabetes
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

I am having a bit of confusion with how I identify myself these days.  I am many things, but I am all of those things along with having diabetes.  

As I sit here contemplating what to share, I'll start with travel.   I have always loved to explore new places both near and far.  Some of my favorites have been  Italy, Australia, Portugal,  Japan, Spain,  Israel, Italy - oh, wait did I say Italy twice?  Alaska.  Some of my favorite aspects of travel is trying new food, shopping, and just experiencing different cultures.   Wearing an insulin pump with an integrated CGM helps make change in food, exercise, and time a lot easier.  

cats in Aruzzo, Italy 

I am an animal lover.  I started volunteering at a local cat shelter, Stray Pets in Need,  5 years ago or so, and I love it. Some days it's hard not to round them all up and take them home, but I know the hour or two I spend with them each week helps them socialize, and of course the important re-filling the food bowl and making their habitats all fresh.

I am a gluten free foodie. Yes, there is really good gluten free food out there, and often pick places of travel based on gluten free food availability.  Italy, for example is very gluten free friendly.

I'm also a daughter, sister, wife, aunt, sister in law, cousin, friend.

Most of all I'm grateful to be happy, healthful, and ready to take on what life has to offer.

Thursday, May 18, 2017

Diabetes Blog Week Day 4: Throwback Thursday: What Brings Me Down

Day 4 prompt: What Brings me Down

Click here for the 
Throwback Thursday: What Brings Me Down - Thursday 5/18 Link List

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic

I feel fortunate that over the years,  I have gone through a small handful of long lasting bouts with burnout & borderline depression.  Not to say that I don't feel that mental tax of dealing with and managing my disease every single day.  Then there's dealing with how others deal with me and my disease, and feeling anxious about doctor appointments, and dealing with health insurance, and and and...

....and then there are great  days when it seems like the planets align and things run as they should.  And then there are the really really bad days.  Or just really bad days. Or just days.  With  diabetes, when things don't align despite knowing you've followed the right steps, it gets frustrating. You don't feel well physically or mentally.  There's not ever a break from it, even on the easier days.

This post is all over the place but it's a good example of how complex living with diabetes is.

So the question becomes, how do we deal with it all?  The answer to that varies by person and situation, but here are some of the things I've learned over the years that have helped me, and maybe they will help you too:

Stop and take a breath:When I start to get overwhelmed, which is one of my trigger points, I try and stop to take a deep breath and ground myself.   It's not always easy based on how much is running around in my head. But, forcing myself to take a deep breath, remind myself that stuff happens helps me.   I'm then able to refocus my energy away from the negative and put a plan together to move ahead.

Get moving: I have also found it helpful to get moving.  Walk, run, Zumba, weight lift, etc.

Talk it out:  I don't often need advice on how to handle something, but I do often need to vent.  It helps to get it out of my system.  Usually whatever it is passes quickly but of course there are some things that linger longer than I like.

Pet a cat:  To me there's nothing more soothing or calming than a purring cat.

To make a very long story short: take a deep breath, refocus, find something that makes you happy. It's very ok to ask for help. I'm not good at this part, but I'm working on it.

Tuesday, May 16, 2017

Diabetes Blog Week Day 3: The Blame Game

Day 3 Prompt:  The Blame Game - Wednesday 5/17
Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)

I feel fortunate that I have only one example of this that I can remember.  I had just returned to NYC after living in Boston for a while, and needed to see a doctor to get prescriptions.  This appointment was with a random primary care physician I found locally to where I lived.   The first thing she asked me was what my last A1C was.  She didn't ask me my history, she didn't ask me how things were going, just straight to the A1C question.    Here's the thing with me, over the years I've had many experiences like this, and I have gotten quite, uhm, feisty with my responses.  So I don't have to play the "what should they say game" as I told her right to her face.  

My response "Perhaps we should start with asking me what my history is,what my last few A1Cs are, or even just to chat, instead of going right to your textbook question and focusing on the A1C.  Maybe this has been the best A1C I've had in years, but since we are new to each other and you don't yet have my medical records, you are making an assumption about me based on one data point."

My mom cringes when I do stuff like this.  But there's only so many of these types of interactions one can take and you pop.  My filter was off, I was tired, tired of these types of conversations and well tired.  Amazingly she did write my my prescriptions and I was off and never saw her again.

So yeah, that happened. 

The other experience I want to share, is an experience which is how I started this blog.   Several  years ago I had a bout with burnout.  I was doing the bare minimum,  insulin and a few bg checks a day.  The rest was all guess work.  I had an appointment with my CDE at Joslin and I was very tempted to cancel it as I didn't want to get lectured.  Instead, I walked in with my head held high and said "I have gotten off track, I don't have much to show you, help me come up with a plan to get back."  I am pretty sure I shocked her, but I laid it out on the table, took ownership of it and the rest was history.  Well, the rest was every other week visits to check in, fine tune things, and I've been on track since.  That appointment was one of the best I ever had, and it did feel like what I imagine a confessional would be like (I'm Jewish, and we have a lot of guilt, but no confessionals).  

Diabetes Blog Week Day 2: The Cost of a Chronic Illness

Diabetes Blog Week Day 2:Today’s prompt Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

I've never calculated exact costs per year that I've spent on diabetes care. I knew roughly how much I spent on prescriptions so that I could try to calculate flexible spending correctly.  A bit of denial here as to how expensive things really are.   

Between co-pays, deductibles, out of my paycheck costs every 2 weeks for coverage*, is by best educated guess close to $20,000 a year.  *health insurance for 2 people was roughly $530/month. 

I am thankful that I had good private health insurance through my place of employment, though I'm realizing now how pricy it was.  Still less than if I had to pay all out of pocket if  I didn't have any insurance.  This is what boggles my mind this week - how the price of the same medication, for the same dose can vary greatly between plan.  I do understand, sort of, that some of that is based on what the companies all negotiate, but it varies greatly, and you have no real insight into what things really cost until your plan starts.  I know ahead of time what average co-pays are.  But that's where things start to get tricky, and confusing, and gives me a headache.  It's also not like you have a choice between 2-3 PPO's or HMO's at work and can investigate and find the one that works best for your needs.  You really don't have much control.  

I'll  say it again, you  really don't have much control. 

To highlight this point, I recently switched health insurance due to loss of employment, and switching to my husband's plan.   The table below compares just 2 medications, and average appointment costs per year:

I know, right? $900 difference for just 2 mediations.

Costs of things, and insurance and pharmacy benefit and how things are negotiated are above my pay grade.  I guess I sort of wish there was some sort of standard, and that overall the costs of things people with diabetes NEED to live, like insulin, were more regulated and less expensive.   And yes, I know that as a whole things rarely get less expensive.