Camp for Adults with Type 1 Diabetes - it's magical!

There is something magical about spending time with people who understand from personal experience what it's like to live with type 1 diabetes.  They don't ask you if you should be eating that cookie ~ you might confer over how many carbs though.  They won't freak out when your blood sugar is low - they'll either ask what they can get you or put some juice (or other glucose) in front of you if you seem like you need it, though, in reality, they are keeping an eye on you from the distance.

For those of us who attended Camp Nejeda as campers, bootcamp was great opportunity to be back at camp, learning, sharing, and even taking a walk down memory lane of diabetes "back in the day" or just remembering the pranks and jokes and fun of being away at summer camp.  From the comments I heard throughout the weekend, those that didn't attend Nejeda as a camper felt "it" too.

This year's bootcamp was bigger, by design than 2015's program.  I was a bit worried (ok, a lot) that we'd have a lot of empty spaces.  But the spaces filled, and it was awesome.   It was phenomenal to see and hear people connecting with each other and sharing, to *almost* be a kid again and have fun.  It  truly filled my heart to see it all come together and for so many people to  feel the magic

Diabetes isn't fun. It's hard. It's frustrating. It's annoying.  But, in a room filled with others going through the same thing, it becomes less frustrating, less annoying and even a little less hard.

I am thankful to the folks at Camp Nejeda for trusting me to build this program, even if they didn't initially see my vision.  I am grateful to the fabulous session facilitators that helped provide insight education, and power to change, to the group.  And last but not least - to everyone who attended -- each person added their own story, their own views, shared, and supported one another in a safe and supportive space which helped make it all come together.

For this experience, I am eternally grateful.

My role in this year's bootcamp was (volunteer) program coordinator.  

On Health Insurance Coverage

In the diabetes community, the the hot topic these days is around health insurance: the rising cost of medications, preferred brands, diabetes technology not covered at all, etc.

There are so many variables with this, most of which I have limited knowledge of, but I don't see it improving - especially with the rising cost of doing business, rising  costs of clinical trials for FDA approval, lawsuits (the US is quite the litigious country), and so on. I'm not saying it's right, I'm just saying.

What I do know,  is that this is isn't new.

When I was diagnosed with type 1 diabetes in 1974, diabetes management was a daily (yes, just one!) insulin injection and urine testing for glucose. .  In my early years with diabetes insulin syringes were not covered by insurance.  The only tool for me to get the insulin that kept me alive, was not covered. Eventually it was covered but I have vivid memories of going to Rite Aid with my mom and having her  plead with the pharmacists at Rite Aid to help us out. To note, the urine testing kits were not covered either.

When home blood glucose testing came to market they were not covered, nor were the strips. I worked at diabetes a diabetes camp in those days and the counselors got to take home the extra supplies at the end of the summer, which usually got me through most of the year.

The same pattern followed with insulin pumps, and continuous glucose meters.

My preferred glucose meter strips, insulin, thyroid medication aren't covered by my private insurance. They haven't been for quite same time..  Some of this I fought since it mattered more, some I did not. Some I fought and won, some I fought and lost. Some I kind of half-assed fought.

Not to forget the tiered prescription costs many pharmacy benefits have.  You can go with their preferred and pay the lowest co-pay.  Mine has 3 tiers, and with each tier, the co-pay goes up, often doubles. If you opt for out of network coverage, or not  preferred (if approved) costs go up exponentially.

All of this comes at a cost to us, the patients. A finical cost.  An emotional cost.  Don't health care provides tell us all that reducing stress helps with diabetes management?

It's a catch-22 of sorts.  We want access to what we and our health care providers determine is best for our disease management.  But we also want it cheaper, or at least not more expensive.  Not to factor into those rooting for public health care -  which in my opinion will end up limiting choices even more.

There is no quick fix, or easy answer to any of this.  My advice to anyone who going is to pick one battle at a time.  If you need help, or not sure how to ask a friend,, call your state senator, call the ADA, JDRF, and me too!

Updated/re-worked June 8, 2016

On Complications

I don't talk much about complications. Not because I don't have any or because I'm in denial about them.  I know the complications I have today are a result of something that happened in the past and I can't go back and fix that.  I do the best I can every day.  I know if a new complication comes up, that my health care providers will help me through it.

When I was in college I was diagnosed early signs of kidney disease.  I was put on a low dosage of blood pressure medicine which helped my kidneys.    To date, my kidneys are doing well *knock on wood* and my blood pressure is in normal range; though I do still take the blood pressure medication.

My eyes.  Growing up I went to the eye doctor once or twice a year.  Things remained fine until I was 18, sort of.  I was at the  Joslin Diabetes Center DCTU (an in-patient program), and the eye doctor said I had papillitis  and since I was 18 I could sign the forms and he could start dong laser immediately.  I was by myself at this point in my stay.  I was scared,. I cried but I did not let him bully me.   He said something to the fact that he was the best, and I remember telling him there were good doctors in NYC as well. Instead I told him I needed to call my parents and we came to  a quick decision not to proceed.  We got a second opinion which lead to a third opinion, both of which said I did not have papillitis.  It was at this time that I met my beloved Dr. Weiss.

Dr. Weiss and his colleague both said my eyes were fine  They stayed fine for another 6 years or so. I was in graduate school when I had my first, second, third, fourth (you get the picture) hemorrhage. I cried at the diagnosis of retinopathy.  Laser?!?  Would I loose my vision??  Would the laser hurt?Would I have to leave school?  What if the laser didn't work?

It was rough.  The first appointment I had for laser, I was so anxious, so in my own head.  Dr. Weiss got me ready - chin on the laser, lens on my eye, ready to go. And I passed out.  Yes, before he started.  We waited a few minutes, I felt better and he set it up again.  And, the same thing happened.  Passed out twice within 10 minutes, from anxiety.  We eventually got through the first session of about 500 burns.

There were some weeks I was at the eye doctor 2x a week; for laser.  Some hemorrhages were bad; some just seemed bad because they were in my center of vision. There were some days when we considered what the  next step would be, but thankfully never got to that point The laser over time, did the trick.  I believe I asked what ALL of the options were, as it made me feel better to know there were other things to try.

Despite this misery I did not drop of out graduate school.  It was at this time I decided that I wouldn't not let diabetes win.  There were some days I had laser in the late afternoon, put my sunglasses on took the subway back to school and attended evening classes (with my sunglasses still on).  There was only one class I needed an extension on for a term paper  I consider that a win.

Over the years I've had some bleeds, that typically resulted in a bit more laser.  I was always surprised that he could fit more in, as my retinas look like Swiss cheese from all over the laser burns.  I know that Dr. Weiss saved my vision  That's the reason that I continued to seeing him even after I moved to Boston.

About six years or so ago I tired to find a local doctor  and it was a very bad experience.  She looked at my eyes and told me that if I didn't have an injection of Avastin that I'd lose my vision quickly.  She didn't even have my medical records yet; nor did she offer a second opinion.  More tears.  To no surprise, I didn't let her touch my eyes but did call the office to request a copy of my medical record.  It was at this time that she offered a second opinion or for me to come in and talk.  She tired to evade the question for the medical record, and I told her I'd be at the office the next day to collect it.  I knew legally she had to provide it upon my request.  I did go back to Dr Weiss, and he did some more laser, and we were status quot for quite some time.

In the middle of last year I decided to try once again to find a local ophthalmologist.  I ended up interviewing 2 doctors.  Both said Dr. Weiss did impressive laser, and both confirmed he saved my vision.  I think I have found a new doctor here in Boston, but it will take some time to adjust

So, there you have it.  The good the bad, the ugly of my life with diabetes complications of the eye. And don't let a doctor ever try to bully you into doing something. If it doesn't seem right, or you have questions, don't proceed.  You are in your right to ask questions, and get another opinion.

Finding My Voice

I've had diabetes for a long time, and have never had an issue standing up for myself or others.
I have always wanted to do more.  But how? What?  What could *I* do to bring change? To make a difference?

Every year I raise as much money as I can for the Juvenile Diabetes Research Foundation.  But every year I also say I want to do more.  But how?  What?  What could *I* do to bring change?  What more could I do to make a difference?

For quite some time I've been advocating for more programming for adults with T1D as there doesn't seem much available.  Understandably there is a lot of support for newly diagnosed children and their families, but what happens when those kids grow up?  They still have diabetes.

In the spring of 2015 things changed.

I applied to to be a MiniMed Ambassador through Medtronic Diabetes, and was accepted into the program!  I wasn't exactly sure what it would involve other than talking to people about life on an insulin pump, which I was already doing.   Around the same time (April/May) Camp Nejeda held it's first program for adults with T1D that I had a strong influence in building, working closely with the development staff.  Then, in June Medtronic Diabetes held a contest to send a lucky winner to #masterlab (see Medtronic Diabetes Loop blog post)  and I was selected to attend as their guest.

(feeling as  though things are starting to fall into place)

#masterlab
I sat in the room with many influencers in the diabetes community, many that I didn't interact with previously , or to be honest hadn't interacted with at all. hearing their stories and what they've accomplished fueled my desire to do more.  But how?  Some of the folks in the room wrote fabulous blogs.  Some were making great strides in advocacy,  It was suggested that I should  keep telling my story and eventually the right person will hear it.

Blogging:
At #masterlab, I had the opportunity to speak to Kelly Kunik about blogging, since I never really tried it.  Her advice  to me was to just write, to not write to gain an audience.  That's when I created this blog, though I've realized this isn't my strong point.  But I will keep at it - they say writing can be therapeutic.  If someone happens to come along and gain something from it, an extra win.

Twitter:
Before #masterlab, I didn't use Twitter.  To be honest, I didn't understand it.  I created my account to contact some companies about customer support issues. I had no idea how to obtain followers, and was in awe again that people in the room had hundreds, some thousands.  I learned how to live tweet, and also learned about Twitter chats.  It took me a while to figure those out but I've come to look forward to #dcde and #dsma  I've even made some local connections through it - who knew?

I want more!
The question remained though, of  how to connect to other T1Ds locally, and routinely?  Luckily, the MiniMed Ambassador folks were already thinking about that!  Through them I was connected to the New England American Diabetes Association (ADA).  Late October I had the good fortune connect with the New England ADA Mission Manager, Alison,  by way of  a volunteer conference.   Alison and her colleagues presented the ADA mission, and at the end asked if anyone had questions.  Since adults with T1D weren't mentioned, so  I asked what they are doing for this demographic.    My question was met with silence, and I thought perhaps I asked something bad, or opened a can of worms that should have remained shut. The silence was everyone thinking about it. It turns out, they weren't doing a lot, and many people chimed in with ideas, and suggestions.  I'm happy to say that since that meeting I've been working with Alison on this and hope to launch some events in the coming months.


but wait, there's more!
For the last few months I have also been working with Camp Nejeda to help develop this year's Survive and Thrive Bootcamp 2016.  We have a great panel of presenters lined up, and spots are starting to fill up!

Last but very not least, I found out a few weeks ago that I was named in the top 15 Ambassadors for 2015.  It takes a lot to make me speechless, but that did it!  The program connected me to the online (#doc) and local diabetes community in ways I never imagined, and I ran with it.

I think I found my voice.

Sometimes It's the Little Things That Get Us

It occurred to me as I was sending an instant message to my husband (during the work day) about a roller coaster of a blood sugar day; that sometimes it's the little things that we deal with as people with Type 1 diabetes that add up and make us want to scream.  Not that the big things don't get to us to, but it feels like those are easier to explain and possibly easier for the outside world to understand.

The little things, you ask?
Like today:  my blood sugar quickly dropped from 125 to 59.  Just as I was eating  lunch.  My hands shook, I felt dizzy.  In my head I knew that the food I was consuming for my lunch would kick in, yet I still gobbled down some Skittles. And as expected my blood sugar went higher than it should have post meal.  So. Annoying.  More annoying? Is that I bolused correctly for everything.  Then low again a few hours later.

Or like that time my jabber, I mean lancing device fell to the bottom of my purse and I couldn't find it so I manually poked my finger with the lancet.  Then found it as soon as I was done.

Or how about having to eat when you aren't hungry because your blood sugar is low?  Or eating to bring your blood sugar up before working out which you  are doing in hopes of losing weight?  Or eating after the workout because something went awry with the temporary basal you set on your pump before working out?

Or being convinced you were given regular Coke not diet Coke despite the server confirming.  And your blood sugar spiking later because you were right.

Or snagging your insulin pump tubing on the doorknob and the infusion set that you just put in gets pulled out.

Most of us laugh these things off since they are somewhat trivial in the day in the life of a Type 1 diabetes.  But they are annoying. And when more than one happen in the matter of a few hours, it makes you want to scream.

10 things to feel lucky about

I've had Type 1 diabetes for over 40  years, and Celiac for about 38 years. Today I am feeling lucky.  It was a very diabetes weekend with an American Diabetes Association meeting where I connected with people from many areas around New England; and a #betesontap apple picking adventure.   Having a very diabetes weekend makes me thankful/lucky/grateful.

1. I am lucky that in 1974 when I was diagnosed there were some issues with the initial diagnosis but that it was diagnosed with no DKA, or coma.
The back story:  On April 24, 1974 my mom went to a PTA meeting and one of her friends who was a nurse saw me and noticed I didn't look well and insisted we go to the hospital.  The ER lost the urine sample; they thought it was other things they did a blood count, but not blood sugar.  The blood count was high, which they said was an infection so they were going to keep me in the hospital overnight.  I believe they started me on IV insulin but much later than they should have.  My mom says she was very annoyed with them (her words) and what they were doing and had me moved to a Columbia Presbyterian hospital in NYC  to a well known pediatrician.  

2. I am lucky that at the time of diagnosis my blood glucose was around 500 (thanks mom for that info), and not higher.

3. I'm lucky that I was diagnosed with Celiac at age 6, when no one knew what it was. Lucky in the fact that they found out what was making me so sick.

4.  I am thankful that when I was 12 my parents agreed to send me to overnight camp, Camp Nejeda. Not just any camp, but at camp for kids with T1D.

5. I am lucky that so many years later I am still in touch with people from camp that I was a camper with, that were my campers, and that were my counselors. To this day I still credit  Camp with how I deal with the social aspects of having diabetes.

6. I am grateful that despite my retina looking like Swiss cheese from thousands of laser burns due to diabetes retinopathy (complication) I can still see.

7. I am lucky that I have friends that offer to pick me up when we go out at night since they know my night vision isn't the best from the above mentioned laser.

8. I am lucky to have the love and support of my family.

9. I am grateful that I have access to an insulin pump and continuous glucose monitor.  I feel that both have made diabetes management a lot easier.

10. I am grateful, thankful, and lucky to have been selected as a MiniMed Ambassador. I've learned a lot; connected with other people with diabetes I wouldn't have had the opportunity to have met & have found support I didn't realize I was missing.

Twitter & the Diabetes Online Community (#DOC)

I created my Twitter account in 2009 or the purpose of contacting a company for customer service issues.  By June 2015 I had about 150 followers, mostly people I had an email address for that were also on Twitter.  The ole' "you follow me and I'll follow you."  I had no idea how to attract followers, even though I googled-it a few times.  The suggestions were to join a Twitter-chat, which made no sense to me.

I was fortunate to have gone to Camp Nejeda (overnight diabetes camp in New Jersey); and through Facebook been in contact with my fellow campers and counselors.  All seemed right in my #DOC world.  

That all changed in July when I attended #MasterLab, (as a guest of Medtronic Diabetes) where I live Tweeted   From barely posting a Tweet in months, I learned very quickly the ins and outs of Tweeterand slowly but surely I was gaining followers.

The Tweeting didn't stop there though.  I learned about the #doc and Twitter chats #dsma, and #dcde.  I try to participate each week and sad when I can't.  The folks of these chats have become an extended family to me.

Today I have 482 followers, and I log into Twitter a few times a day to see what's going on.  It's become the first place I go to get a pulse on what's happening in the word of diabetes!