Dream

I have a dream.

I’m in my 43rd year of living with Type 1 Diabetes (T1D).  

My new endo told me that I will get some kind of medal from the Joslin Institute when I reach 50.  Really.  Who cares?  They get a chip after 30 days in AA, NA, GA and SA.

17 years ago I made a “push”. I was 39 yrs old, broke, in debt up the wazoo, out of shape, not taking care of myself…..I figured if I did not make a change I wouldn’t make it to 42.  Over a 2 year period I started inquiring into several “things”, like…… writing, reading, yoga, meditation, running, acupuncture, massage, eating well, cranial sacral therapy, and more.  It was slow at first. Then stuff began happening.  I got a job, I was getting in shape, feeling better about myself.  Life changed.  I got out of debt, started making good money, got in shape, blood sugars starting coming down/better control, I was happier.  

During this time I had a three month period of time where I took off from work and really connected with my current “edge” and began to “push” against it.  I reduced insulin requirement up to 50%, at times.  I mean long period of times (week or so).   Since that time the roller coaster reached the top and started its’ descent.  What goes up is going to come down.  It’s a long story and I will spare the details, for now.  It can be summed up as this. I went from A1C’s in the 9’s, broke, in debt, depressed, feeling hopeless and helpless, not working out, addicted to things I need not be addicted to…..I went from this to In top physical shape; I could run 5 miles under 50 minutes.  I could do 2 Bikram yoga classes in one day.  My weight was ideal.  I felt strong.  I made enough money to buy a cool condo in Boca Raton, Fl within walking distance of my Bikram Yoga Studio.  It was a 5 minute drive to the beach.  I had a lot of free time.  Things were good.  

I got on the pump and I changed my attitude about testing my blood sugars.  I wanted to know.  I tested 10-15 times a day and loved the flexibility of the pump.  With the combination of getting in super physical shape and having the pump, I got my A1C’s in the low 6’s. I ate anything I wanted.  I wanted to eat good.  

I have often compared managing blood sugar as a type 1 to flying a plane.  The physical plane itself is the physical body.  I had transformed my physical body into a stealth fighter jet.  It wanted. It needed good fuel in the food I was eating.  I needed to inject insulin but the insulin seemed to be working better.  I needed less.  I was personally experiencing one of the most profound yoga principles;  “LESS IS MORE.”  I was getting this at so many levels.

My dream is to share this experience with others who are challenged by type 1 diabetes.  Whether that be the person with diabetes, a parent, a sibling, a friend, a healthcare worker (that includes you doctors). They sometimes think they are special and in a group of their own. My father was a doctor and I have met a lot of them…so I know.  

This is how I want to share it.  I want to “host” an intensive retreat like program where I demonstrate and guide others into an inquiry of what I did, how to do it and why.  Not like a boot camp or simply an educational experience.  It is an immersive training which will be based on the principles of yoga and Natural Law Principles.  I have a support “team” in place right now.  It includes a CDE, an acupuncturist and cranial sacral therapist, a Bio-feedback specialist, a massage therapist, a life coach and a few yoga teachers incluing one who is a Bikram Certified Teacher.  

Each day will consist of:

*2  yoga classes/day

*Meditation

*Walking

*1-2 hours classroom meeting discussing many topics including yoga principles and applying to diabetes management, spiritual     metaphysical “map” inquiries.

*Great     Food.   Will, of course, accommodate for vegetarian.

*Some     form of body/mind work.  Could be acupuncture, light therapy,     massage, cranial sacral therapy, bio-feedback, life coaching….and     a few more.      

*There will also be a few opportunities to do a few other things like go to the beach or an excursion to Captiva or Sanibel Island.

I visualize the retreat being in South Florida around the Fort Myers area.  I want it to happen in November of 2019.  I want to keep this initial one small (8-12 participants).  And my dream doesn’t end there……..

In a way, this is my new five year plan.  I’m turning 57 in 2 weeks. Still here.  No complications (knock on wood).  I think that what I did 17 years ago is a huge factor in why I am still here.  I’ve come to realize that it is best done in “spurts.”  Interval like. And an intensive retreat where we are focusing on where our edge is and working on expanding can be a profound “spurt.”  It’s kinda of like intuitevely knowing to do a combo bolus.  The body wants to receive it in spurts some short and some a bit longer.

I want the initial retreat participants to be those who want to not only personally experience pushing their edge but also have a desire to help others with our condition.  T1D is like a yoga pose.  It is like walking on a high wire.  And it is like flying a plane.  So, my dream is that from this initial retreat we plan a second one and then some will qualify to lead their own retreat.  

I have so much more I want to say and if you are interested in it let me know or visit the link to my blog site where I have been writing about all of this for the last 10 years.  

I will write a future post called My Dream 2.  Where I can expand on some of this.  It’s awesome for me as well because I am creating something which provides me an opportunity to do this work more and more.  I have done it with others but not people with diabetes.   I have worked with a few people who were depressed and addicted.  There is a close parallel to these conditions and diabetes.  A few of these people wrote client reviews and I posted them in my blog section as well under Client Reviews.

Bikram Yoga class today

Went to the 4pm Bikram Yoga Class yesterday.  Needed a hard workout.  It’s been a long winter.  I hadn’t been in awhile.  Decided to go at 2:45pm.  Checked bg….106. Ate a lunch about an hour ago and still had quite a bit of insulin on board -5.32units.  Took my pump off.  Drank a bottle of water.  Need to hydrate.  Put a bottle of gatorade and 2 more bottles of water in the freezer.  I was not in an ideal situation to go to class.  I know I had over bolused a bit for lunch with that last bg reading.  Decided to hop in the shower.  I find it good to take a long hot shower before a Bikram class.  Got out of the shower.  Packed my 2 towels, gatorade, water, yoga mat, extra shirt and sweat pants to change in to after.  Ok it was 3:30pm and I had been disconnected for 45 minutes.  Tested again – 96.  Still had 3.1 units on board.  I was going low and it would be risky to go into a 90 minute Bikram class like this.  Decided to drink about 5 oz of Simply Lemonade.  I would drive down to the studio (10min drive) and I would test again before getting out of the car.  At that point I would decide whether to proceed or to bail and come back home.  I really needed the workout.  But there is a part in my brain that always says DO NOT GO INTO THAT HOT BOX OF A ROOM.  I got to the studio around 3:50pm.  Checked bg – 132.  2.4 units on board.  I had been disconnected for an hour.  I decided I would be ok because I had a gatorade if I happened to go low.  Before I go on a few stats and a little history:

My basal rate: .950 units per hour.  My I:C ratio: 11  MY IFC:  40  Medtronic 670 pump.

Age: 57.  Date of diagnosis November 1976.  Been practicing yoga for 20+ years.

Went to a month long 200hr yoga teacher training program to deepen my practice in 2006.  

A lot of my work utilizes yoga principles.  They seem to be universal.

Ok.  Enough of that.  The studio is on the third floor of a 3 story building in downtown Ithaca, NY.  The weather was cool but sunny.  One way to enter the studio is via the emergency stairs on the side of the building.  Very steep.  I took that route and upon entering I was breathing hard.  Boy am I out of shape.  Got set up in the room.  Bikram is in a heated room.  Ideal temp is 110 degrees and humid.  The class was packed. Must have been 33 people lined up in 3 lines staggering to ensure a view in the mirror. When it is crowded like this it usually gets pretty hot.  

If you have never done Bikram Yoga let me describe it a bit.  As I said, room is hot. There are 26 postures most done in 2 sets with a very brief rest in between.  You need a mat, 2 towels, a water and a gatorade if you are diabetic.  I bring my fanny pack in with all my stuff because I am obsessive compulsive about leaving my pump, keys, wallet in the car or in a locker room.  I know.  The heat can be an issue for the insulin. Something to be aware of.  I disconnect from the pump most of the time.  It was easier before I got on the pump, of course.  I had a Dexcom when they first came out about 10 years ago or so.  I hated it at that time for 3 reasons.  1.  It was another infusion site in my body and after so many years of injections and pump ports I really didn’t need another one.  2.  The receiver came off during Bikram classes.  The adhesive melted.  3.)  I had more lows on the Dexcom because of my Obsessive compulsiveness.  It drove me crazy.

So, the class starts and I really wanted to pee before it started but there was so many people in a line that I decided to forego.  It got hot fast.  I weighed myself before driving down.  185.5.  I knew I was going to lose some water weight.  I need to lose about 10 lbs to get to ideal weight.  What better way?  

I have probably been through over 2500 Bikram classes in the last 20 years.  This class was in the top 10 of being the hottest.  It was brutal.  One goal of doing a Bikram class is to face the situation whether it be the pose or the heat and stay with it.  You don’t want to leave the room unless absolutely necessary.  I have probably only had to walk out of Bikram class maybe 5 times total. At least 7 people left this class for different periods of time.  There were a few poses that I went into child’s pose as a break.  

Made it through.  Felt like I was going to boot a few times but I worked it out.  It was 6:10pm and I was ready to drive home.  Checked bg -124.  Insulin on board .32.  I re-connected and I intuitively knew I should probably bolus a unit or two but decided to wait until I got home.  Basal was running normal now.  Got home.  It was now 6:30 pm. I was approaching 48 hours with my infusion site.  Good time to change out.  Love when I can take it off and take a shower and then put a new one in.  Checked bg again before doing this.  157.  Bolused 1.25 units and peeled her off.  Got in the shower.  Put a new site in, primed it and bolused another unit because I was going to eat soon anyways.  Weighed myself.  181.5.  Lost 4 lbs.  Cooked up some left over Ribeye from dinner the other night with some toast and salad with chunky blue cheese dressing.  Put a beer in the freezer.  Nothing like a cold beer after that 90 minute torture chamber experience.  Got to be careful though.  Got to make sure I drink enough water and no more than a beer or 2.  Bolused for dinner.  It’s always a guess.  There was some left over bernaise sauce that has a lot of sugar in it.  And I had been disconnected for over 3 hours earlier.  And you know how that works.  Checked two hours after eating – 227.  Oops.  2.3 units on board.  The math says I should be ok but I know different.  Oh, I forgot to mention the mayo I put on the steak too.  I had a lot of fat grams working.  Bolused 2 units.  Increased basal to +20% for 2 hours.  Checked at 11pm, s hours later and 168 with 1.87 units on board.  I should be good to go.  Slept all night without waking up.  Woke up at 6:30am  BG -101.  My favorite number.  The number for the Arch Angel Michael!

cognitive dissonance

Do you have COGNITIVE DISSONANCE?  We all have cognitive dissonance. It’s the nature of the reality we live in.  Anything arises does so with a polar opposite as well as all ‘points’ between the two. If you don’t have cognitive dissonance then you are immersed in the delusion of Maya.  What the hell does this have to do with Diabetes???

When I was 27 (In my 13th year since diagnosis), I was asked by a local hospital to be on an exploratory committee to explore the need for a “treatment/support program” that focused on the psycho-social issues surrounding the dis-ease of diabetes in children between the ages of 8-16.  A diagnosis of diabetes quickly creates an environment of chaos and emergence-y.  It’s similar to something going seriously wrong on a plane and the oxygen masks are deployed.  A “Correction” to the system must be instituted.  That correction, of course, is injectable insulin.  Hopefully, the plane is brought under “control” somehow by the pilots and a semblance of balance is restored.  But the plane will never be the same.  

As we were exploring, we came to believe, that, while the children were certainly dealing with a lot of emotional, mental and social issues, it was, in fact, the parents, who were most impacted.  We decided to turn our focus to a parents’ group.  We did a “pilot” program and a father who was obviously distressed because his eleven year old daughter was newly diagnosed, asked me……”How do you ever accept this?”

I felt his sense of hopelessness and helplessness.  He understood that the situation was serious and, I he was scared.  

I told him that the biggest desire I had was to cure the diabetes in myself.  I told him that I believed I could and that, therefore, I could never fully accept it.  I told him that I had been living and surviving with it for 13 years and, while challenging, it was doable. I will never forget this father asking me the question and the look on his face.  My father was a doctor.  He was always able to “fix” anything that went wrong with us.  He could not fix this.  

In my opinion, what must be accepted in order to get “the plane” back under enough control to keep flying is a continuous expansion of response-ability to the situation we face.  We are tasked with employing, understanding, managing and constantly monitoring a perpetual motion of the physical body that has been destroyed.  I have utilized a 5 step process …..

1. Confront head on, with integrity the reality of the situation. It’s a tough one but it is doable.  When I was diagnosed, I took one shot of long acting insulin in the morning and peed on a strip to see how much sugar I was spilling in my urine.  I was “flying blind.”  Today, we have pumps and CGM’s and much more knowledge of what is needed to stay in at a safe blood glucose “altitude” and stem off future complications.

2. Explore, Inquire and increase understanding of what needs to be accounted for and the feedback needed to continually improve results.

3. Integrate the quality of our confrontation and understanding to employ a system to manage both our blood glucose levels and our life.

4. Become a Master of this challenge and inspiration to others.  Doing this reduces self suffering and the suffering of others.  This was the Buddha’s objective; Find the cause of suffering and how to eradicate it. Diabetes has a way of creating an environment for immense suffering because it is something not wanted and appears as though it won’t go away.

5. Validate our results and share with others.  I sometimes call this 5th and final step “Celebration.”

This is a cyclical process and therefore we are constantly moving on to the “next step.”  A great Zen Master said, “The practice of Zen is like traveling along a circle.  Does not matter much where you are.  What is important is to keep moving.”

The metaphor of the plane is, obviously, to the physical, mental, emotional and spiritual body of the afflicted.  However, it is also comparable to the family unit.  In my experience, I am very aware how it has affected my siblings, my parents, my friends, my coworkers, my coaches, my team mates…etc….

When a child “gets it” the parent or parents are our co-pilots in assisting us to fly our own plane. I cannot tell you how much gratitude I have for the people around me who have supported me through this journey, which I am now into my 43rd year of.  There are times when I was not response-able and there were times when I was all over it.  There were times when I had a hard time confronting it head on and there were times when I said “bring it on.”  

Over the years I have written about my experience with diabetes.  I wrote a blog series called “Transforming Diabetes.”  My most recent blog is called “The Yellow Brick Road.” where I explore the 5 step process a bit deeper.  

I know that there is a “CURE.”  I know it because I desire it.  As long as I am here I will continue to work the process that I have discovered that has enabled me to stay here.  I will never accept that this will not change.  I believe that a deep Kabbalistic concept to be true.  That concept is that – Fulfillment is the seed of Desire.”  That implies that any desire we have, has, as its’ seed, its fulfillment.  Talk about cognitive dissonance!  

Support Group

I was at a support group meeting a few years back.  I was living in Boca Raton, Fl, at the time.  I was doing good.  On an upswing in life.  I had been attending this meeting every month for the last few years and had a “reputation” of someone to follow or learn from.  

A mother of a newly diagnosed 11 year old girl came to the the meeting.  You could see the desperation in her face.  Looking back, she was seeking validation that it was going to be ok.  When she “shared” she began talking about all the great things her daughter had done and how the diabetes had not slowed her down.  

Then I fucked up.  It was my turn to share and I needed to keep my reputation up and I was seeing the denial the mother was showing and I used a word that catapulted her from Denial to Anger.  I used the word disability.  I talked about how having T1D was a dis-ability.  I knew first hand.  I played hockey and soccer at a fairly high level throughout college.  At times, I was at a disadvantage.  Didn’t mean I couldn’t play. But….it was harder for me with diabetes than if not.

Having diabetes is a handicap.  OOOPS! I used another word that literally had her out of her seat.  I played on the golf team too.  Any of you who play golf know that everyone has a handicap.  

Ok.  I was now under full attack.  By the way, where was the daughter?  Why wasn’t she at the meeting?  Too young?  Over protected?  I don’t know…

Why I am writing about this?  It was a long time ago.  Well…..I’ve been on this Beyond Type 1 site for a few weeks posting a couple posts and reading the posts of others.  And I am awakening to the fact that it really doesn’t matter if you are right or wrong, if you are struggling or you are unicorn whisperer, what matters most is finding a way to validate where you are at right now.  To make it ok because this is a long trek…

The mother didn’t want to be pushed that night to see the reality of her daughter’s dis-ease.  She wanted to be supported.  At the time I thought that enlightening her to the truth of the matter was support.  This is not always the case.  Sometimes you just need to be listened to and understood.  

For me, the reality is that this condition has been a real battle.  It has mostly got in my way and altered my perception of life.  I’m 57 years old and I didn’t plan on being here this long.  Now what?  Well…..If nothing else….today I would like to think that instead of triggering that mom with a reality that she did not need to address at the time…I would have validated her for being there and being an excellent “co-pilot” in her daughters “flight.”   

If it wasn’t for my mom I wouldn’t have made it this far………

The Path……

I’m tired.  I know….no one wants hear that from someone else.  It’s ok on this site because there is an “upfront agreement” that it’s appropriate to ‘vent’ or express hardship because we all share a similar challenge that few others can even begin to relate to.  I’m in my 43rd year since becoming aware that I “had” T1D.  I’m 56 years of age fast approaching 57.  . . .  Boy, could I tell you some stories……But that’s not the point of this post.  What is the point?  

I don’t have any complications other than the naturally prevalent and evolving Obsessive Compulsive Disorder.  A few years ago I told my doctor that I was feeling increased anxiety and the blues.  He suggested I sit down and chat with someone.  I did.  After three sessions I got my diagnosis.  Now….I completed one year of graduate school in psychology so I was somewhat cognizant of the many possible psychiatric disorders that have been invented including the 10 personality disorders.  Yes, it was 1995 when I learned all about this stuff and, therefore, I was not completely up to date.  And the field of psychology has been, is and will probably continue to be in a state of constant “flux.”  Therefore, I was surprised to find out that I was diagnosed with a new personality disorder called “Adjustment Disorder.”  My first reaction was …. DUH.  Then I laughed.  I said to my “counselor:…”Of course, half sarcastically, it makes perfect sense!  How does one really adjust to T1D?  Because, to be honest, it’s a clusterfuck; an impossible task.  Yet, I am still here.

The therapist went on…..It is like “Cognitive Dissonance.”  I said, “Of course it is.” Then I said….”What do you suggest I do?”  All of this……The diabetes, the adjustment disorder, the cognitive dissonance, the left vs. the right, good and evil, Light and Dark, YIN and YANG…..is the duality of our lives.  

I am tired of this interplay between my physical body, and my maladjusted mind and injected insulin.  This dissonance.  This adjustment disorder.  This dysfunction.  This DIS-EASE.  Results in such UN-EASE at times.  It’s Exhausting.

What’s the point?  Is it just survival?  Because, at times, that is the way it is……Crawling to the fridge at 3am with a blood sugar of 28….downing a pint of lemonade and eating a bag of chips with french onion dip…disconnecting my pump because just the thought of more insulin dripping in is deeply alarming….passing out as the blood sugar begins to elevate….waking up at 7am with a mouth so dry I can’t talk….Headache. feel like I ran into a brick wall…check bg…412…..get out the syringes…pump it up!

You can do it Michael, says my family, friends and supporters.  Most don’t even know the battle, of course….and those that do …….know that I can do it…at times.  At times..I am just tired.  

What do I do now?  It does feel like I am in the season of “End Times.”  Kinda coincides with all that’s happening in our world.  Things are about to change.  It doesn’t look good or maybe it does?  Because you can’t have anything in this life without its polar opposite.

Here is my point……There has to be a blessing to this curse.  This sucks.  There must be a reason.  I know through my yoga practice and other studies of a TRUTH that keeps me going even though I am tired.  I know that “This too shall pass.”  I’ve been through a lot with diabetes.  Been low and been high.  It is more difficult for us to find the middle path than with someone with a normal physical body.  Or maybe not!  I believe that the blessing of diabetes is in the lesson it teaches us about the arising of the polar opposites…of the duality….of the interplay between yin and yang and the battle between Light and Dark.  

The Buddha would put it this way….”It is equanimity and awareness.  Like the wings of a bird.  Or the two wheels of a cart.  When practiced together they lead to liberation from suffering.  If either is weak or lacking, it is impossible to progress along the path.” 

Buckminster Fuller says….”Total Accountability and Total Feedback Constitute the minimum and only perpetual motion system.”

Kripalu yoga instructs.. ..”First Proper Alignment …Second..Find and explore your edge.”

While my physical body and mind grow weary….my heart and soul are beginning to awaken to the “hope” that there is more to this than surviving.  I won’t get religious.  But allow me to inject a spiritual perspective to inquire into if so inspired.  If easily triggered by this topic please stop reading here.

The Kabbalists……And btw, Kabbalah is not a religion.  It is more like a spiritual map or decoding program of the “spiritual world.  Trigger alert!!  Jesus was a Kabbalist.  Anyway, they would say that the purpose of life comes down to an understanding of The Creation Story itself and the “Why” behind it.  And, without expounding on those things at this time……We are here because of the need for, In Hebrew everyone…… TIKUNE.  TIKUNE, defined, means “Fixing” or “Rectification.”  What needs to be fixed?  What needs to be rectified?  The answer is our VESSEL TO RECEIVE THE LIGHT OF FULFILLMENT;  THE LIGHT OF THE CREATOR.  Why does it need to be fixed?  Well…that’s the questions isn’t it?  Kinda like Jeopardy.  

Again, I am not writing this to promote a faith or a dogmatic system of understanding our existence……There are many “maps” of the territory.  I have referenced several in this post already….Yoga, The Buddha, Chinese Medicine, Kabbalah.  Bucky Fuller …… But for a moment suspend your disbelief and consider Diabetes…….

We are missing the “key” that opens the “door” to the cells (vessels) of our body that permits glucose (energy, light) to flow. ….. It is said that the opponent always attacks through the immune system.   It must.  Why was our immune system comprised?  

Ok.  I will wrap up for now…..I feel a little better.  Thanks.