Sunday, June 26, 2016

Avoiding Complications

Avoiding Diabetes Complications
A few years ago the Diabetes Health magazine published an article stating that diabetics should maintain a good BG average and A1c, and avoid a roller coaster type of control. The roller coaster control involves having many highs and lows, and that would involve data widely scattered above and below the average. Blood sugars that rise and fall on the path of a roller coaster are traumatic to the body. Experiencing this trauma over and over again for a long period of time can lead to diabetes related complications, even if the A1c is good. I will demonstrate with two examples.
Patient A has test results 40, 55, 65, 100, 135, 145, and 160. The average is 100, but there are numbers that indicate unhealthy highs and lows.
Patient B has test results 72, 80, 94, 100, 106, 120 and 128. The average is again 100, but the data is more closely packed, and none of the numbers are undesirable.
Patient B is experiencing much better control, and is much less likely to have diabetes complications. The "standard deviation" (SD) is a measure indicating how closely the data is distributed above and below the blood sugar average. Patient A had much larger deviations from the average of 100. Patient B had smaller deviations, so the SD was much better. I try to keep my SD close to 20, but it is difficult to do. My A1c's have been in the 5.4-6.4 range for almost 10 years, but when I have too many highs and lows, my SD is higher and I can feel the neuropathy symptoms. I sometimes have some spots of retinopathy in both eyes if this situation persists for too long.
The purpose of this discussion is to demonstrate the fact that a very good blood sugar average can still involve diabetes complications if there is a significant number of highs and lows over a long period of time. Don't rely solely on a blood sugar average and A1c. Try your best to avoid so many highs and lows. A good average accompanied by a stable control is the best way to avoid complications. Proper dieting and well chosen exercise routines can help very much in avoiding the highs and lows.
I had A1c's no higher than 6.4 for almost 13 years, but had the beginning stages of neuropathy and retinopathy. My control had been tight, but it was necessary to make it even tighter. I stopped having so many highs and lows and after a few months had passed, the retinopathy disappeared. The neuropathy is still present in one foot, but I rarely experience any pain. If I have high blood sugar for several hours there is sometimes mild pain during the night. I have been a diabetic for 70 years, and have not had any serious complications. I want to keep it that way!!

Friday, June 24, 2016

Support From The DOC

Support From The DOC
My diabetes diagnosis was in 1945, a few days after my sixth birthday. There was very little known about diabetes back then. The only rule my parents had to follow was to not let me have sugar. I could eat anything else I wanted. There was very little change in my life except for avoiding sugar, and taking one shot of insulin each day. There was no device for testing my blood sugar, and no information about carbs, and their effect on blood sugar. It seems almost a miracle that I have now lived for 70 years with T1, and have no diabetes related complications except for some mild nerve damage. There are many other type 1 diabetics like me in the US who have lived with their diabetes for 50 years, or more. Many of them have received the 50 year medal from the Joslin Diabetes Center in Boston. A study is being done on the medalists to see if the factors can be found that have enabled them to live so long without any serious complications. I participated in the study in 2009.
Despite my having good diabetes health, there was so much I did not know about diabetes. My doctors in the early years knew very little about diabetes. In July, 2006, I watched an episode of the Dlife TV program. They mentioned that there was a Dlife website that offered support to diabetics. I joined that day. There were many diabetics of all types taking part in interesting discussions. There was so much information that was new to me, and it was easy to see this was the right place for me. How could I have gone 61 years without all the things I learned on the Dlife website? There were several other websites that were also very helpful, and I joined several of them. I shared my knowledge with my new online friends, and they shared their knowledge with me. Some of the members on Diabetes Daily convinced me to use an insulin pump. I started pumping in June, 2007. My blood sugar is much more stable now, and I have fewer highs and lows. I have not needed assistance with a hypoglycemic episode since July, 2007. I felt that the education I received from the diabetes online community (DOC) was so good for me. I helped many fellow diabetics on several diabetes websites, and that made me feel good.
I joined Facebook in December, 2010. There seemed to be an endless number of groups there that were focused on diabetes. I am currently a member of about 40 of those groups. I truly enjoy assisting the more uninformed diabetics, and their families. It is so easy to see how valuable it is to all participants in the online discussions. Many of them are getting too little advice from their doctors, but they receive many replies to their questions online. Hundreds of parents of young type 1 children were impressed by my longevity and good health. They tell me that I have given them inspiration and hope for the futures of their children. My wife and I attended the Friends For Life (FFL) type 1 conference in Orlando, FL, in 2015.It is an international conference for type 1 diabetics, but the emphasis is on the type 1 children and their families. There I was able to meet many of my online friends. I was a speaker that year, and I enjoyed speaking to my audience.
My communication with my online friends, and the research I have done, has given me experience and much knowledge about type 1 diabetes. I have written a book about my life with diabetes, and have given talks to two local diabetes support groups in my part of New York. It would be great if I had the opportunity to become a motivational speaker, and visit many areas in the US.
It is a dream of millions of diabetics to have long, healthy, and productive lives. The DOC provides the support, education, and incentive to make this possible.

Friday, June 17, 2016

Long Term Success With Type 1 Diabetes

I have been type 1 for 70 years, and I do not have any serious diabetes related complications. While participating in the Joslin medalist type 1 study in Boston, I was told that several participants freely admitted that they have not taken good care of themselves. They eat a lot of food containing sugar, and other fast acting carbs. Despite their bad eating habits, they do not have any complications after many years of type 1. All of the 1000+ participants have been type 1 for at least 50 years, and are US citizens. I was also told by the lady in charge during my participation that several participants have used tight control, but have experienced some serious complications. These are the exceptions to the rule. The majority of the participants in this study have done at least reasonably well with their control, and they do not have any serious complications.
In the Joslin Medalist Study, Dr. George King, head of the study, did discuss the "special inner protection" that so many medalists have. He said that this mysterious protection seems to protect us against serious problems with our eyes, kidneys, and our nervous systems,,,,but not our hearts. He wanted us to know that we should take every precaution to keep our hearts healthy. There is a secret group on Facebook called "The Joslin Medalists" where many members have posted about their stents, bypass surgeries, heart attacks, etc...but these same people have good eyesight and healthy kidneys.
After almost 60 years of type 1, I was diagnosed with spots of retinopathy, and neuropathy. My A1c had been in the range 5.4-6.0 for many years, but I still had these complications. My control involved too many highs and lows, a roller coaster type of control. Those highs and lows can produce an average which is quite good, so the A1c will also be good. That can give us a sense of false security. The roller coaster control is traumatic to our bodies, and complications can result, even though the A1c is good. I started pumping insulin in 2007, and my control was much more stable, with not so many highs and lows. The retinopathy disappeared, and has been gone for nine years. The neuropathy is still present, but it rarely bothers me now. Avoiding complications seems to require a good A1c, and more stability with not so many highs and lows. If I had started pumping in the 1990's I may not have had any complications at all.
I read an article a few years ago that said the life expectancy of young type 1 diabetics in the US is almost as good as for non diabetics. That is very encouraging news!!

Monday, June 13, 2016

An Endo, T1 For 80 Years

I have been type 1 for 70 years, but there are people who have been type 1 much longer than me. Here is an endocrinologist with type 1 for 80 years. A wonderful story!!

"Last month, Joslin awarded Dr. C Kenneth Gorman the Lifetime Achievement Award for living for 80 years with type 1. Dr. Gorman is one of five recipients of the 80-year medal and the only Canadian recipient thus far. In 1935, at the age of two, Dr. Gorman was diagnosed with T1D. He went on to become an endocrinologist and worked as a research fellow under Dr. Charles Best, one of the co-discovers of insulin. During his time with Dr. Best, Dr. Gorman began corresponding with Dr. Elliott Joslin and accepted a position as an N.I.H. Trainee Fellow in Diabetes at the Joslin Clinic from 1962 to 1964. Dr. Gorman's next goal is to celebrate the 100th anniversary of the discovery of Insulin in 2021. Congratulations, Dr. Gorman!

For more information on Joslin's medalist program or to apply, click here:"

Saturday, June 11, 2016

Type 1, Not Autoimmune?

I have always assumed that all T1 diabetics are autoimmune, but is that necessarily true? Have any of you diagnosed with T1 been given the GAD65 test for autoimmunity? I have not had that test done. My diabetes was diagnosed when I was recovering from chickenpox and mumps when I was 6 years old. Those diseases probably caused internal damage to my pancreas. If physical damage causes a pancreas to stop producing insulin, then why would that necessarily mean autoimmunity is present? I do not have any relatives who are/were T1, so I feel my T1 is not genetically induced. I think it is possible that I am T1, but not autoimmune. Do any of you think this is possible?
I have an endo appointment soon, and I am going to ask for a GAD65 test. I hope she will agree to my having the test.
Here is the link to the GAD65 test:

Thursday, June 9, 2016

Diabetes Burnout

There are many articles, blogs and books about diabetes burnout. It is being discussed in the Joslin Medalists Facebook group. Like some of the other medalists, I do not feel that I have experienced burnout. I was diagnosed in 1945, when I was only 6, and diabetes became my way of life. I do not remember any other way of life, and I am comfortable with living with diabetes.
The article below says that diabetes burnout does exist, and it is different for everyone. Do you, or have you experienced diabetes burnout? If so, how do you describe your burnout? What are the symptoms you have experienced? How do you cope with it?

Diabetes Advocacy

I enjoy being a Diabetes Advocate. The link below gives you the opportunity to sign up to join our team of advocates for diabetes. "Your advocacy experience, your story, makes you an effective recruiter to build our momentum for more wins that lead to better care, fair treatment, and, ultimately, a cure for diabetes."

Wednesday, June 8, 2016

My Podcast Interview

Stacey Simms has a podcast network called Diabetes-Connections. On Sept 1, 2015, she interviewed me in a podcast shown below.

If you want to listen to more of Stacey's podcast interviews, use the link below.

Wednesday, June 1, 2016

Puming Insulin in 1978

The following blog was written by a lady in Australia who started
using an insulin pump in 1978. She gave me permission to post this blog here.

(Written in 2003)
I was thinking at some ungodly hour last night how much I love the current pumps, and how different they are from 25 yrs ago, and thought I'd actually specify what pumping in 1978 involved.

First off, there were no easy plastic cannulas you inserted at home. Initially, the cannulas were similar to IV drip cannulas, and yes, they hurt. Mine were inserted into my butt... but not just put in and left, no no. The whole procedure was done at the hospital and involved betadine swabbing, a local anaesthetic, at least two medical staff, the whole shebang/catastrophe. After the site was swabbed thoroughly and the local given (why do locals sting so much??), the doctor (usually an endocrinological registrar; if you were unlucky, a resident) would thread the cannula in, using a rather large introducing needle (21g I think), then back OUT, and in again. I have no idea why this was necessary, but at the time it was deemed to be so. If these sites had problems - infections - they exploded along the whole line. I had one infection so severe that 25years later I still have a small crater on my right buttock from it being excised and drained (but thankfully can no longer remember the intense pain associated with the three direct penicillin injections straight into the site that were administered). Sites were usually replaced every 5 days, and I dreaded those days. The whole procedure took about 3hours.

As a back up, we had "butterflies" (winged infusion sets). If a cannula came out, a butterfly could be used as a stopgap until a new cannula could be inserted. Butterflies brought their own horrors, of course. While they had a much finer gauge (as small as 25G at one stage, more commonly 23G) and were far shorter, positioning them was very difficult because they were inflexible metal needles. Regardless, the trauma of the cannula insertions led me after 3mths to request the use of butterflies on a permanent basis (at the ripe old age of 13!).

Now, one problem with the butterflies was that the tubing actually absorbed insulin, so priming them was a time consuming business. First, insulin for the "day strength" syringe (presuming it was day time) had to be prepared (I generally prepared 6 days' worth of day and night syringes in advance, and labelled them so I could tell them apart, storing them in the fridge). Preparing a syringe was fiddly/fussy, but not difficult. It meant getting a 2ml syringe (or more, depending how many were being prepared), using an insulin syringe to withdraw the correct amount of insulin for the particular syringe, injecting it from the drawing up (insulin) syringe to the "pump" (2ml) syringe, then using a second 2ml syringe to add normal saline to the pump syringe to dilute the insulin adequately. The fully prepared syringe - with insulin and saline in proper proportions - could then be capped with a sterile needle and stored in the fridge. Day and night strength syringes were quite different, and varied over time. To actually prepare the butterfly meant taking the pre-prepared syringe, and rinsing the tubing of the butterfly out TWICE, before gearing it up for insertion (we also did that with the 2ml syringes, adding a small amount of insulin and flushing it through the syringe twice).

Using butterflies was "interesting". When I first started putting them in, an insertion, including swab padding and taping took me about 15 minutes. After some years I had it down to 2.5 minutes (yes, I timed it, I was a busy girl!!). Using both cannulas and butterflies meant you could only sleep on 3 of your possible 4 sides (front, back, left and right), as you invariably had a sore spot or a potentially sore spot on the fourth. If you bumped a butterfly it was wont to dislodge, which was not only extremely painful but meant, of course, that your insulin delivery was disturbed or possibly discontinued. I look back on all of this and wonder how I endured 17years of it really - but endure it I did, and gladly. Finally I was able to eat what I wanted when I wanted and I was no longer left out of more "normal" activities that had previously been denied me because of my diabetes.

Placing a butterfly involved having the following things on hand: butterfly, syringe, pump, gauze pads, tape, and alcohol swab. First, the site had to be swabbed (in later years I left this part out, as well as the priming of the tubing). The butterfly was "fed" with insulin (no checking for air bubbles back then). Then, the needle would be inserted, at anywhere from 40-70degrees. Gauze placed under the wings of the butterfly helped to prevent it pressing down and thus the actual needle pushing up through the subcutaneous tissue (ouchy!), meaning it stayed relatively stable; a piece of gauze over the wings meant that the entire dressing could be replaced at any time without (theoretically) displacing the needle. Lastly, tape would be applied liberally to strap it all down, and the syringe and pump would be reconnected.

The first pump, of course, was somewhat of an encumbrance. It was a Millhill infuser, and it was all metal. Hence, every time I flew to Sydney (my family and I were living in Canberra) it would set off the metal detector. Canberra airport in the mid to late 70s was a quiet place, however, and they came to expect me every 3mths, jetting off to Sydney for my 48hour line to be put in, where blood was taken every 30minutes night and day to try and get a profile of what my blood sugars were doing. It was all very false of course, but all they could get, since I refused to do even rudimentary tests at home (when they became available). The Millhill was about 20cm (8") long, 10cm (4") wide and 5cm (1.5") deep. It was LARGE. It was later replaced by the Graseby Infuser, which was slimmer, but still large. Both were kept (by me) in a specailly made pouch that was worn on my thigh, with straps that went up around my neck (sans boobs) and my waist (apres boobs), with an additional - optional - strap around my thigh to ensure it didn't bounce around.

The pumps did not have variable basal rates. You had a set rate and that was it - but at least it meant you were getting a steady stream of insulin 24hrs/day (all being well). The number of times I disconnected and then lost my needle, dressing and all, in the surf is uncountable. I hate to think what the finders thought of their strange flotsam and jetsam. Bolusing was also an interesting event. In theory, you could program the pump to push through X mm (yes, millimetres, on a scale, which had to be converted depending on the size of the syringe - 2ml was my standard but these pumps could take 5 and 10ml syringes as well - to ml, which then had to take account of how much insulin - diluted, remember - was in each ml) at a particular time. It was very difficult, so much so that I took to just going "OK, here's my syringe, I know it has about 0.7units per .1ml, so I need half a little mark" and manually pushing that through. If you didn't know how to carb count, you were completely lost - and even some of us who knew how to do that - in "portions" - were still lost.

It's funny, I've just written all this and it sounds archaic and nightmarish now .. but at the time it was cutting edge and it saved my life. I still have my old pump and pouch. I wonder if I'll ever discard them? Somehow, I doubt it.