Recently, I was at a party, when a person who works in the
medical field, who I just met, disparaged “Dr. Google.” I paused for a moment, took a deep breath,
then spoke up. I explained that I do
advocacy on behalf of people with adult-onset Type 1 diabetes who are misdiagnosed
by medical doctors as having Type 2 diabetes, an altogether different disease. I explained that many if not most people with
adult-onset Type 1 diabetes are misdiagnosed, as I was. I told her that I was hospitalized in
diabetic ketoacidosis (DKA), my life was saved, and then an endocrinologist
took me off of IV insulin, the hospital paperwork indicated “Type 2 diabetes,”
and I was sent home with a prescription for Type 2 meds (glyburide). I said that for this group of people who are
misdiagnosed, Dr. Google is what will save them. If they get online and do some research, they
will come across Facebook Groups (LADA Support Groups) and TuDiabetes.org
(founded by Manny Hernandez, who was misdiagnosed), where people will assist
them with information about autoantibody testing, which is used to distinguish
between autoimmune diabetes (Type 1) and non-autoimmune diabetes (Type 2 and others). This medical community person did in fact
change her tune, and agreed that for some cases, Dr. Google really can make a
difference and in fact can be life-saving.
Sunday, December 2, 2018
Sunday, September 9, 2018
Reporting on the 2018 TCOYD ONE: The Ultimate Conference & Retreat for Adults with Type 1 Diabetes
Last year, I had such a great time at the TCOYD ONE Conference,
that I signed up for the 2018 event.
Kudos to the amazing people at Taking Control of Your Diabetes (TCOYD),
who outdid themselves again. Type 1
diabetes camp for adults? Sign me up! The conference was held at Paradise Point
Resort in San Diego—a great location. Also,
many thanks to the sponsors—as a result of conversations with Tandem and Dexcom
reps and the approval of my awesome endo, I have the Tandem tSlim + Dexcom G6
(and the Basal IQ, which is the predictive low glucose suspend) on the
way. I also was able to purchase an
excellent travel bag for all of my diabetes supplies, courtesy of Eu Go
(eugodiabetestravelcase.com). TCOYD
filmed all of the talks, and the 2018 talks have been posted online (the 2017
talks are also available).
The talks were incredible. Dr. Irl Hirsch never ceases to
amaze—this year, Dr. Hirsch spoke about optimal use of CGMs, and he also spoke
about how to use your CGM to do basal rate testing. I was blown away by the talk by Dr. Anne
Peters, who I have long admired and who advocates for those with adult-onset
Type 1 diabetes. Dr. Peters revealed
that she had autoantibody tests performed on herself, she is positive for four
of the five autoantibodies (but is not yet symptomatic), and she is the oldest
person enrolled in Type 1 Diabetes TrialNet.
Dr. Peters spoke about the use of Type 2 drugs in Type 1, and
personalized it by talking about the drugs that she is using to try to slow the
progression of Type 1 in herself (liquid metformin, for example). There was a panel discussion on Type 1
TrialNet. The amazing Kerry Sparling led
a group discussion about the good, the bad, and the ugly of Type 1
diabetes. IMO, negative
emotions/negative outlook are a huge factor in how well we can care for
ourselves—and yes it is up to us as individuals, with the support of our
diabetes team and loved ones, to do the 24/7/365 drudgery. Dr. Bruce Buckingham and Dr. Rayhan Lal, both
from Stanford, spoke about automated insulin delivery systems (closed loop
systems using a CGM + insulin pump + algorithm). Dr. Lal talked about Looping (DIY closed loop
systems and #wearenotwaiting); he has put hundreds of patients on DIY systems.
Dr. Jeremy Pettus gave a great talk about the rapid acting
insulins Fiasp and Affreza—Affreza is an inhalable insulin that is
significantly faster acting than injectable insulins. Fiasp is only slightly faster than Novolog
and Humalog.
Following last year’s conference, I reached out to Dr. Irl
Hirsch, and I was able to interview him for my blog on the topic of
misdiagnosis. This year, I ran into him
and was able to thank him—he is the most gracious, most brilliant man.
Tips and tricks:
·
Wash your hands before
performing a blood glucose test—even milk on your hands will skew the
result! Especially if you are using any
kind of closed loop system (insulin pump + algorithm + continuous glucose
monitor, wash your hands to be sure that you get a good result.
·
Pre-bolus before
meals. Humalog/Novolog are not that fast
acting—it is good to pre-bolus by 15 or 20 minutes—figure out what works for
your body.
·
Dr. Edelman was
campaigning to get more widespread use of CGMs.
CGMs are a game changer, and really improve the lives of people with
Type 1 diabetes!
I had a great time hanging with my support network, the amazing women of
the Type 1 women’s group that I attend in Oakland, California (thank you Amber,
Hanneke, and Sarah!). When I was walking
to the start of the morning activity of power walking, I met Amber V, who was
diagnosed with Type 1 in pregnancy (yes, autoimmune gestational diabetes is a
real thing, but overlooked). In a
Facebook group, I had provided Amber V with my blog on autoimmune gestational
diabetes—it was the first time she had heard of it! Amber V and I shared a big hug.
Frequently amongst people with Type 1 you hear, “There is too
much money to be made on treating those of us with Type 1 diabetes, so there
will be no cure.” I would challenge you
to listen to these extraordinary men and women (Hirsch, Buckingham, Edelman,
Peters, etc.) who are doing so much to improve our lives. Many thanks to
Steve Edelman, founder of TCOYD, and his team for putting on this extraordinary
conference.
Sunday, August 5, 2018
Traveling with Type 1 Diabetes: Melitta’s Best Tips
I love to travel! I
got the travel bug from my mother; I had the good fortune to travel with her to
many places (New Zealand, Africa, Turkey, Chile, Mexico, Canada, plus lots of
the USA) before she departed this Earth.
Traveling with Type 1 diabetes is a challenge, but by being prepared (yes,
I was a Girl Scout) it can be less challenging, and of course lots of fun. Note that I wear an insulin pump and a
continuous glucose monitor; that influences my tips.
(1) Make a packing list
I have a basic packing list on my computer, which I adapt for the needs of each trip. List ALL of your needed diabetes supplies. Like Santa: make a list and check it twice! I love a packing list! Not only do my packing lists includes what clothes, shoes, and gear I will need, they also include all of my diabetes supplies. I start with a core packing list and adapt it for the specific length and environment of each trip.
(2) Like NASA, always have a backup plan in case things go wrong. Have your backup supplies (lots!), and know that your devices may fail!
My insulin pump failed while on a remote island in the Bahamas. I always carry both long and short acting insulin, plus syringes, so I just switched from my dead pump to MDI (multiple daily injections). Some people like to carry an extra pump as backup—me, I like “old school” MDI. While traveling in Bhutan, I accidentally dropped my testing kit without knowing it. When I discovered the loss, after a moment of panic, I calmed myself by reminding myself that I had a backup bag with everything I needed. Luckily, through the efforts of some fabulous Bhutanese guides, I was reunited with my primary kit.
(3) Take your diabetes supplies in your carryon luggage—do not check it!
Luggage gets lost and things get stolen.
(4) Don’t put all of your eggs in one basket
You never know when your bags will get lost by the airlines, a purse snatcher will grab your bag, or when you will just lose something along the route. So, split your supplies into multiple bags. If you have a travel partner, have your partner carry some of your supplies. If you are traveling solo, split your supplies between several bags. Carry an extra glucose monitor, and remember spare batteries for all your devices.
(5) Get trip insurance (for some trips)
For most of my trips out of the country, and for some USA travel to remote locations, I get trip insurance. Get coverage that offers medical evacuation and connection with local English-speaking doctors. I use Travelguard—I still have never made a claim or used it, but it gives me and those with whom I am traveling peace of mind.
(6) Wear a medical alert bracelet and carry a medical alert card in your wallet
For me this is something I do every day but on vacation it is even more important. If you are unable to speak for yourself, these can be your voice in an emergency.
(7) Carry lots of hypo treatments + things to fuel exercise
I carry lots of glucose tabs to treat lows, plus dried fruit and Gu packets to fuel my exercise (I prefer to set a temp basal for exercise, but sometimes you need fuel). I also always carry glucagon—in 23+ years of diabetes, I still haven’t needed to use glucagon, but I still always carry it just in case.
(8) Be prepared to assist fellow travelers who have diabetes
When I was in Punta Cana, Dominican Republic, the sister of a woman with diabetes approached me in the resort dining room. She saw my Dexcom on the back of my arm, and let me know that her sister had forgotten her insulin, and only had a little bit left in her insulin pump. Since I carry lots of insulin, we were able to refill the woman’s pump. I now have a beautiful custom necklace, courtesy of the PWD’s grateful sister, for that simple act of helping another PWD.
(9) In areas with lots of pickpockets, carry your daily supplies in a slash-proof security bag
I like PacSafe and Travelon security bags—I wear the bag crossbody. This allows peace of mind in areas with lots of pickpockets such as Paris, or where theft is a concern.
(10) Have a note from your doctor, translated into the local language if you are traveling to a non-English speaking country
The letter should state that you have Type 1 diabetes, and include descriptions of everything you carry—insulin pump, CGM, extra insulin, syringes, glucagon kit. The letter can help you get through security checkpoints, and not just at airports, but say at border crossings.
(11) Get necessary vaccinations for where you are going in the world
(12) Consider the food and water supply
If the local water supply is not potable, use bottled water or have a way to purify your water.
(13) Carry the medications that you may need
I carry Cipro, Pepto Bismol tablets, and anti-diarrheal medication. Also, I find that I often catch a cold when traveling, so I carry the cold medications that I prefer (Sudafed and nasal spray don’t affect my BGs).
(14) If traveling by plane, consider wearing compression socks
These help with circulation, and help you avoid swelling of the ankles. Also, move around! I like to do yoga poses on the plane to help my circulation and to stay as comfortable as possible.
(15) Consider Global Entry or TSA Pre-check
I have Global Entry—it gives me TSA pre-check (easier to get through airport security) and makes it much easier to get back through US Border Control.
I have a basic packing list on my computer, which I adapt for the needs of each trip. List ALL of your needed diabetes supplies. Like Santa: make a list and check it twice! I love a packing list! Not only do my packing lists includes what clothes, shoes, and gear I will need, they also include all of my diabetes supplies. I start with a core packing list and adapt it for the specific length and environment of each trip.
(2) Like NASA, always have a backup plan in case things go wrong. Have your backup supplies (lots!), and know that your devices may fail!
My insulin pump failed while on a remote island in the Bahamas. I always carry both long and short acting insulin, plus syringes, so I just switched from my dead pump to MDI (multiple daily injections). Some people like to carry an extra pump as backup—me, I like “old school” MDI. While traveling in Bhutan, I accidentally dropped my testing kit without knowing it. When I discovered the loss, after a moment of panic, I calmed myself by reminding myself that I had a backup bag with everything I needed. Luckily, through the efforts of some fabulous Bhutanese guides, I was reunited with my primary kit.
(3) Take your diabetes supplies in your carryon luggage—do not check it!
Luggage gets lost and things get stolen.
(4) Don’t put all of your eggs in one basket
You never know when your bags will get lost by the airlines, a purse snatcher will grab your bag, or when you will just lose something along the route. So, split your supplies into multiple bags. If you have a travel partner, have your partner carry some of your supplies. If you are traveling solo, split your supplies between several bags. Carry an extra glucose monitor, and remember spare batteries for all your devices.
(5) Get trip insurance (for some trips)
For most of my trips out of the country, and for some USA travel to remote locations, I get trip insurance. Get coverage that offers medical evacuation and connection with local English-speaking doctors. I use Travelguard—I still have never made a claim or used it, but it gives me and those with whom I am traveling peace of mind.
(6) Wear a medical alert bracelet and carry a medical alert card in your wallet
For me this is something I do every day but on vacation it is even more important. If you are unable to speak for yourself, these can be your voice in an emergency.
(7) Carry lots of hypo treatments + things to fuel exercise
I carry lots of glucose tabs to treat lows, plus dried fruit and Gu packets to fuel my exercise (I prefer to set a temp basal for exercise, but sometimes you need fuel). I also always carry glucagon—in 23+ years of diabetes, I still haven’t needed to use glucagon, but I still always carry it just in case.
(8) Be prepared to assist fellow travelers who have diabetes
When I was in Punta Cana, Dominican Republic, the sister of a woman with diabetes approached me in the resort dining room. She saw my Dexcom on the back of my arm, and let me know that her sister had forgotten her insulin, and only had a little bit left in her insulin pump. Since I carry lots of insulin, we were able to refill the woman’s pump. I now have a beautiful custom necklace, courtesy of the PWD’s grateful sister, for that simple act of helping another PWD.
(9) In areas with lots of pickpockets, carry your daily supplies in a slash-proof security bag
I like PacSafe and Travelon security bags—I wear the bag crossbody. This allows peace of mind in areas with lots of pickpockets such as Paris, or where theft is a concern.
(10) Have a note from your doctor, translated into the local language if you are traveling to a non-English speaking country
The letter should state that you have Type 1 diabetes, and include descriptions of everything you carry—insulin pump, CGM, extra insulin, syringes, glucagon kit. The letter can help you get through security checkpoints, and not just at airports, but say at border crossings.
(11) Get necessary vaccinations for where you are going in the world
(12) Consider the food and water supply
If the local water supply is not potable, use bottled water or have a way to purify your water.
(13) Carry the medications that you may need
I carry Cipro, Pepto Bismol tablets, and anti-diarrheal medication. Also, I find that I often catch a cold when traveling, so I carry the cold medications that I prefer (Sudafed and nasal spray don’t affect my BGs).
(14) If traveling by plane, consider wearing compression socks
These help with circulation, and help you avoid swelling of the ankles. Also, move around! I like to do yoga poses on the plane to help my circulation and to stay as comfortable as possible.
(15) Consider Global Entry or TSA Pre-check
I have Global Entry—it gives me TSA pre-check (easier to get through airport security) and makes it much easier to get back through US Border Control.
Most importantly, travel!
See the world and expand your horizons.
Have fun, life is an adventure!
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