Clinical Trials

Yesterday was a tough and long day.

Despite the fact that I thoroughly read the 22 pages of paperwork, and  asked a ton of questions at the consent visit, I knew what to expect for this clinical trial. Yes, I knew it would be 11 or 12 hours of mostly sitting, but I wasn't counting on it being physically tough.  And I didn't realize just how tough it truly was until I fell asleep the second I got on the commuter train to go home.

Since the study was designed to test how well glucagon worked in a controlled setting, my blood sugar was purposefully kept low, with very careful and constant monitoring.

Despite the fact that my blood sugar stayed between 45-60 for close to 5 hours, I felt mostly ok.  I was able to talk, and form complete sentences which I typically can't do in this blood glucose range. In a normal day if my blood sugar drops from 120 to 50, I'm a puddle of mush.  I'm not sure if the reason was because my blood sugar stayed low for so long, or that there wasn't a sudden drop, or if there was something else going on, I'll let the investigators figure out that piece of the puzzle.

Hour 6 was the hardest, I felt ready to give up, I was whiny and didn't feel my best.  But, it passed relatively quickly and I was able to laugh at myself.

While it was a hard and long day, I didn't give up.  I kept thinking "without people like me, there can't be advancements in diabetes treatments."  And to me, that's everything.  Knowing I'm doing everything I can to potentially help other people with diabetes makes me happy.

It took me a long time to find my first clinical trial to participate in.  The government website clinicaltrials.gov  is hard to navigate and hard to determine if you might qualify.   There are apps and sites now that make finding a trial close to you, that you may qualify for a lot easier. I found the one I'm currently involved with through the JDRF Clinical Trials Connection site:
http://www.jdrf.org/research/clinical-trials/

If you do decide to participate in a clinical trial read you are provided with. Ask a lot of questions.  Then ask some more questions.  While I was surprised with how hard my day was yesterday, I look forward to the second appointment of the same nature in a few weeks.

Life Before Bolus Wizard

It's hard to imagine life before bolus wizard, isn't it?  Before bolus wizards, before insulin pumps, before Lanuts and Trujeo, and Apidra there was NPH, Regular, Ultra Lente.  Diabetes management consisted of an exchange diet and a sliding scale for insulin.  The exchange diet was basically an allotment from the food pyramid per meal:  for breakfast you might get 1 milk, 2 starch, 1 fat, and 1 fruit.  The sliding scale for insulin delivery consisted of something along the lines of: if your blood sugar was between 80-120 you'd take 4 units of short acting insulin and 10 units of long acting.  And that in a nutshell was diabetes management in the 1980s. (and way before that was urine testing and a shot of mixed beef/pork insulin).

Fast forward a bit to 2000 when I decided to pursue insulin pump therapy, for more flexibility with managing my disease.  In 2000 there were two companies in this space. Medtronic Diabetes, and Disetronic Medical Systems.   I chose Medtronic Diabetes because I was aware of the company, and their history, and felt it was the right option for me.  Before starting on the pump, as a patient at the Joslin Diabetes Center in Boston I had to meet with a social worker and diabetes educator to ensure I was going on a pump for the right reason.  To them "I want to go on a pump so I can eat donuts all day" wasn't a good reason, but wanting more flexibility in my life was.

Between 2000 and today I have used several  MiniMed pumps.  Each new pump included the addition of more innovate technology than the previous:

• 2000:  MiniMed 508 This pump came out in 1999 and I started on it in the spring of 2000.   It featured bolus and basal, and a temporary basal option, and came with a remote control to deliver a bolus! 
• This pump operated on 3 watch size batteries, which made me a frequent customer at Radio Shack.

• 2004: Paradigm 512:  This pump came to market in 2003, and  my best guess is I started on it sometime in 2004.  This pump introduced us to bolus wizard, and the blood glucose meter transmitting readings directly to the pump.  
• Bolus wizard calculates the amount of insulin a person should take based on input from the insulin pump user including active insulin, blood glucose level, and number of carbohydrates in a given meal.
• I use this feature daily - to determine if a correction is needed for high blood sugar, and to help figure out insulin dosing for food.  

• 2011: Revel: This pump came to market around 2010/2011, and I most likely started using it around that same time. The Revel introduced us to the continuous glucose monitor (CGM), and SofSensor. 
• I was an early adopter of this pump due to the continuous glucose monitor.  
• The SofSensor worked well for me, but I was a chicken when it came to the insertion process and insurance didn't cover CGM back then so I didn't use it frequently.

• 2014: 530G with Enlite  This system was approved by the FDA in 2013 and I started on it in 2014.  This system introduced the Enlite sensor and threshold suspend, and an easier  CGM sensor insertion process.

• Threshold suspend (also known as Smart Guard) was a turning point for me with my diabetes management.
• As a person with a history of overnight low blood sugar, the idea of the pump stopping delivering insulin once the cgm readings  reached a set low number (that I worked on with my doctor), was a game changer.
• The Enlite sensor/cgm system has worked great for me.  My cgm readings and blood glucose readings are often within a few points from each other. 

• 2016: 630G system with smart guard technology:  This pump came to market in August 2016 and I have been using it since October.  This system introduced us to a new platform, a vertical pump layout, waterproofing, and large color screen.

• I wasn't initially sure about this one.  On paper it seemed like a shinier version of my beloved 530G.  But, I'm glad I made the switch. 
• Some of my favorite features:
• The screen which shows everything I need to know about my diabetes management at a glance.  
• The Guardian transmitter: this transmitter has a stronger signal, and as such I haven't had any connection issues since starting the pump.  With the 530G I received weak signal errors on a weekly basis. 
• Alarms:  The alarm chimes have changed, and there are more volume options which have been great.

We've come a long way in 16 years.  From a basic insulin pump, to an insulin pump that can stop insulin delivery based on a low blood sugar reading from a continuous glucose monitor, and for that I am grateful.  And this is only the beginning.  I look forward to seeing and hopefully being able to use the hybrid closed loop system, which eventually become (I hope) a fully closed loop system where the pump does most of the work.  I look forward to one day having less decisions to make about my diabetes management.

You Can't Eat That...or can you?

What really gets my goat is when people say “You shouldn’t eat that.” (because you have diabetes)

In my opinion, and that of my health care team, unless the food contains poison I can eat *almost anything, with some exceptions:

• *Celiac Disease:  being gluten free  places s a lot of restrictions on what I can eat and where I can eat.
• Type 1 Diabetes:  places restrictions on when I can eat, depending on my blood sugar and insulin dosing.
• high blood sugar usually isn’t the best time to eat a donut, or sometimes anything at all depending on how high it is.  
• low blood sugar mandates I eat something as soon as possible to bring blood glucose levels back in range.

Several years ago after a spout of diabetes burnout, I was at a diabetes clinical appointment and the diabetes educator suggested, after a chat about snacks, that I shouldn’t eat popcorn since it can spike blood sugar.  Popcorn has always been a staple in my snacking arsenal and I wasn't going to give it up. Not without a fight. Instead I told her point blank that I was not going to give it up and instead asked her to help me come up with a plan to avoid  possible post-snack-spikes. And she did

Carbs are not my enemy.  Food is not my enemy.  Diabetes is my enemy. My personality has always been that if I really want something, I will figure out how to do it.  My relationship with food is the same way.

I eat cereal. I eat Chinese food, and pizza, and donuts, and Tater Tots, and grapes, and so on.  The only things I don’t eat are foods containing gluten, bananas, and peppers.

 

How do I do it? I’d like to say the answer is simple, but it really isn’t.   I watch, observe, and learn. I watch and observe how my body reacts to different foods, by testing my blood sugar frequently and with the use of continuous glucose monitoring (CGM) technology.

What I've learned:

• I've learned with the help of my MiniMed530G with Enlite (insulin pump and continuous glucose monitor) that bolusing at least 20 minutes before a meal with carbs helps. A lot. 
• I've learned that when my blood sugar is over 160, it often takes a bit more time for my insulin to start working.  
• I’ve learned how helpful the dual wave bolus feature on my insulin pump can be:
• The dual wave bolus allows you to split the total amount of insulin delivering some as soon as you start it, and the rest at a time frame you've set. How much you do, and how long you set the dual wave basal is trial and error. I started with 50% up front, then 50% an hour later then tweaked it from there.  
• I've learned to pay attention to portion size also plays into this, as well as reading labels.  I've learned that by paying attention to these portion size (and ingredients) when at home in a controlled setting it's a good starting point when I'm out.

It takes time and practice and isn’t an exact science but it is possible.

• If you don’t have a CGM, it might mean more finger sticks than without CGM but it is possible.
• If you aren't on an insulin pump, or your's doesn't have a dual wave bolus option you can still do this manually - perhaps with the help of a timer so you don't forget to do the second bolus.

As always, before starting anything new you may want to check in with your health care team to determine what is the best approach for you.

Bon appetite!

This picture is my blood sugar reading 2 hours after Chinese food for dinner.  

Fundraising Dilemma

Until recently, I was one of those people who only raised funds for JDRF. In my head, I justified it as they are doing important work to find a cure for diabetes, and also fund research for other important advancements in diabetes management.

When asked why I didn't fund-raise for Camp Nejeda, the diabetes camp I attended as a kid, my flip response was "it's just camp, JDRF is doing real work."  Yeah, cringe, I really thought that despite how connected I still am to camp and all of the people I met there, and how much I believe in their mission.  

Over the last 2 years, while working closely with the Camp Nejeda Foundation team on the adults with T1D boot-camp I started to realize how much camp needs fundraising support as well.  That they do real work.  Every summer the nurses, doctors, counselors, kitchen staff, and countless others give their heart and soul to make sure the campers are safe, have fun, and learn that diabetes doesn't have to stop you from being a kid.  You can swim, play soccer, go boating, and have diabetes.   

Last year I wrote about my diabetes camp story and to this day credit Nejeda with how I deal with the disease, social settings, and  how I deal with all the psycho-social associated with living with a chronic disease.  It's so much more than "just camp." 

I recently broke it down more simply:

JDRF works on research that helps all people with diabetes - in terms of better management tools, better insulin, supporting clinical trials, and reaching for that cure.

Camp Nejeda lets kids be kids, today  What they learn now at Camp lasts them for a lifetime, and is critical in my opinion, in providing the psychological tools they'll carry with them until the cure.

So my dilemma is this -- I want to raise $900 for Camp Nejeda for their 9/25 walk, and $2000 for the JDRF walk in Boston in October.  It's not easy, but I've never backed down from a challenge and not about to do so now.

If you would like to support either cause, I'd very greatly appreciate it:
Note: Camp Nejeda is not affiliated with JDRF or ADA, so they depend even more on individual donations and support.  

Camp Nejeda: https://goo.gl/DtF2QF

JDRF:   http://www2.jdrf.org/goto/helpcurep

Access Matters

Access to medication or management tools for any disease is important.
For me, a person with Type 1 diabetes my priorities are insulin, test strips, and a mode to do both. Meter, and either insulin pump or insulin pen/syringes.  The rest are important - insulin pump, continuous glucose monitor, but the first are critical.

Today I called Express Scripts about not being ableo to refill my test strips, and while I was on hold for half an hour due to them needeing to release it from a weird queue it was in, I asked about a  co-pay discount card I received at Friends for Life by the strip manufacturer.  Since my strips are not a preferred brand, I pay a higher co-pay than the preferred brand.  The preferred brand doesn't work well for me.  Unfortunately I was told that Express Scripts doesn't honor these discounts with mail order, only at the local pharmacy.  But, they won't approve that either. So, damned if you do, damned if you don't.

Grumble.

I previously wrote about my history with items not being covered: On Health Insurance

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.