Tag Archives: Type 1 Diabetes

Being a Type 1 Diabetic in the 1970’s

Trouble brewing…

Being diagnosed with Type 1 Diabetes in the 1970’s was very different than it is today.  They had insulin (beef and pork derived), glass syringes, urine tests (blood glucose home testing had not been developed) and a list of foods you could and could not eat.  That was about it.  Looking back now, it really seems we were in the dark ages in terms of how we manage it now.

I remember Labor Day Weekend in 1970 like it was yesterday. We were new to California, transplants from the East Coast.   Mom and Dad, six kids and  a dog living in a small rental house while waiting to move into our new home which was under construction.  I was ten, about to turn 11 and looking forward to moving into our new house and starting sixth grade at the new school three blocks away.  But life had other plans.  We’d had a busy summer.  My Dad was in a new job and my Mom was home managing all six of us kids.  My little brother was six, then me, three older sisters and my big brother who had just gotten our of the Army.  Everyday was packed with summer activities – swim lessons, library, trips back and forth to the new house to carry over boxes and supplies.  On weekends we’d go to the beach, the Sierras, or the State Fair.

It was wonderful.  Until about August.  Suddenly I was thirsty – all the time.  I was active and it was hot.  Back then there was no internet and most of our time was spent playing outside.  My being thirsty didn’t really raise a red flag with my Mom.  She just thought we needed more to drink and so she’d mix up another pitcher of Kool-Aid.  I downed glasses of the stuff which meant I had to go to the bathroom a lot.  Again, no one really noticed.  With six kids, someone was always in the bathroom.  Then towards the end of August I got sick.  So did one of my brothers and one of my sisters so my Mom chalked it up to a summer flu.  It ran it’s course for my brother and sister but not for me.  My stomach began to hurt and and I felt achy.  I was still thirsty and preferred something to drink over anything to eat. I was also losing weight.

Going into Labor Day weekend I woke up one morning vomiting.  I would just get over a bout, have something to drink and then feel sick all over again.  My parents growing increasingly  concerned, decided to take me to the Doctor.  Back then, it was a big deal to go to the Doctor.  You had to be pretty sick in my family to warrant a trip like that.  My parents must have suspected something was very wrong and it couldn’t wait through the weekend.  The Doctor’s office was closed and the only thing open on weekends would be an emergency room.  My Mom, worried over my fever and vomiting, constant thirst  and now, noticed weight loss- packed me into the car and my Dad (retired military) drove us to the nearby Air Force base.  They had an ER and he knew it would be open.

Diagnosis…

At the ER, my symptoms somehow fast tracked me to the front of the line.  I think a child continuously vomiting will do that.  The next few hours were a blur.  I was in agony by now.  Constant vomiting, stomach cramps, so very, very thirsty.   We wouldn’t know it for a few more hours but I was in Diabetic Ketoacidosis.  Looking back  I realized now how fortunate I was to have a Dad who was able to access a military hospital.  Doctors there see everything.  It didn’t take long for my symptoms to register with them.  Blood tests were ordered, IV started.  Within hours my labs came back with a reading somewhere in the 1200’s.  normal is closer to 80 mg/dl.  I remember needle sticks, voices, concerned faces and then going to a hospital ward.  If I had been more aware I’m sure I would have been pretty upset but  I just wanted to go to sleep.  I was lapsing into a comatose state.  I remember lying in a bed, with bright lights above and Doctos and nurses surrounding it.  I remember being so groggy and a nurse slapping my face telling me I must stay awake and not to fall asleep.  More vomiting.  More needle pricks and then nothing.

I awoke in the morning to a surreal scene.  A lab technician was pricking my finger for blood.  I looked up and saw a glass bottle hanging above the bed with a tube snaking down into my arm.  I felt so outside of my body.  A nurse came in  and began to clean me up.  I was covered in sweat, vomit and blood.  I was ten and I should have been freaked out but it didn’t seem real.  I knew I was in a hospital, I remembered my Dad taking me into the ER the day before and laying on a gurney but everything was fuzzy after that.  Now I was waking up to this – strangers in my room, procedures being done and suddenly it hit me and I was scared.  Tears started rolling down my check.  “Where are my parents?’ I remember sobbing.  The nurse was very kind and continued cleaning me up.  She assured me they were outside the room and would be in after talking to the Doctor.  She changed me into a clean gown and then changed the bed and propped me up with some pillows.

I was still kind of out of it but I had a new concern.  I was starving!  I asked the nurse if I could have anything to eat and I remember she smiled and went out of the room.  A moment later she came in with a big tray.  There was jello and chicken broth and toast and tea.  It wasn’t a feast but I was famished and suddenly, anything looked good.  I wouldn’t know till later that the IV in my arm was not only giving my much needed fluids but an insulin drip as well.  I was feeling better because my blood sugar was coming down from the incredible high of the day before.  I dug into the dishes on the tray and it was soon gone.

I heard new voices in the hall and suddenly I knew my parents were there.  My Mom and Dad in true military style had been banished from the peds room I was in until visiting hours were started for the day.  This was 1970 and parents simply were not allowed to stay with their child for any reason outside of visiting hours.  To this day I do not know if they stayed overnight at the hospital the previous night.  I never asked and now they are long gone so I will never know.  But they were here now and that’s all that mattered that morning.  They hugged me so tight.  I did learn later that it was not known if I was going to make it the night before.  I think everyone was a little in shock that not only did I make it but I was sitting up devouring the hospital breakfast tray.

Several Doctors came in with my parents and came over to my bed.  They explained what was happening to me and why I was in a hospital room and then they said words I didn’t understand at the time but which I’ll never forger.  “You have diabetus mellitus”, they said carefully.  “Your pancreas does not make insulin anymore.  You need insulin to live.  You will have to take insulin shots every day for the rest of your life”.

A Different Life…

My life that morning took a drastic turn.  Yesterday I was a normal girl – this morning I had diabetes.  I couldn’t take it all in at the time.  I remember the Doctors pulling my parents aside and talking to them about all the things I could and could not do.  My parents never knew but I heard everything the Doctors said.  I heard I might go blind, I heard I might lose a limb, I heard about shortened life expectancy but all I really focused on was that I would have to take shots every day.  For a 10 year old kid, it seemed there could be nothing worse.

I am a little envious of newly diagnosed diabetics today.  Diabetes is managed with pumps and CGM’s and blood glucose meters. All foods can be eaten in moderation as long as carbs are accounted for.  The prognosis is better now for a life with fewer complications as long as Diabetes is controlled and managed.

It was different in 1970.  There were no BG meters for diabetics to use.  We tested our urine for glucose!  It was an ‘after the fact’ way to test something.  Back then you took a sample of your own urine in a little cup then you took 5 drops of it and put it in a test tube.  To that you would add 10 drops of water, then add a clinitest tablet to the vial and watch the chemical reaction as the tablet sizzled in the test tube.  After a minute the mixture would turn a color in the tube and you could guestimate what the glucose level in your urine was.  A blue color meant no sugar in the urine, green meant a trace amount, yellow a moderated amount and orange, a maximum amount.  I don’t know if if I was ever told what amounts of glucose corresponded to the the colors.  I do know that it was very good to have a blue or green color in the test tube.  Yellow and and orange were bad.  Not that they were really that helpful because urine lagged behind blood glucose.  High levels of sugar in the urine didn’t necessarily mean high blood glucose levels and vice versa.  But in 1970, that was all we had and the doses of insulin I would take would be based on those readings.

The first few days, the nurses gave me the insulin shots I needed each day.  They were mixes of long and short acting beef/pork insulin and they had glass syringes and huge needles.  I hated shots.  All kids did.  I thought it was awful to have them several times a day.  But it got worse.  After a couple of days, a nurse walked in with a tray with two vials and a syringe and told me from then on I would be doing my own shots!  Did I mention I was ten?  I burst into tears.  No way, was I going to do that!  But these were military nurses, I should have known better.  “Fine”, she told me.  “When you take your shot, you can have your breakfast.  We’ll hold it at the nurses station.”.  I stared at the syringes and vials.  The nurse softened a little and actually put her arm around me.  She told me that she knew this would be hard but it was something I would have to do the rest of my life.  I would have to do start sometime and ten was a good age to learn.

I watched her draw up a syringe and demonstrate how to give the shot in my thigh.  I could smell the breakfast trays going up and down the hallway.  I was so hungry.  She put the syringe in my hand and made a fist around it.  She had me pinch up my skin with the other hand.  She guided my fist with the syringe and plunged it into my thigh.  Together we pushed the plunger and we were done.  She was happy but I was a mess.  “Every day”, I asked. “Every day”, she said.

Back then, you could be hospitalized a long time when you were diagnosed.  Because I had been in Ketoacidosis, I stayed in the hospital for two weeks till I was stable enough to go home.  It was a pretty intense experience with a lot of teaching about urine testing, insulin shots and what foods I could and could not eat.  Food was counted as “Exchanges” and you were given a diet plan to follow.  My parents came daily, more often, my Mom – and that helped to have that support.  Visiting hours were limited and I was so homesick each night when they went home.  At the end of two weeks, it was decided I could finally go back home and begin my new life with Diabetes.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Retinal Tear and Vitrectomy recovery

A little background on me…

I’m a Type 1 Diabetic.  I was diagnosed with it when I was 10, back when they called it Juvenile Diabetes because it primarily happened in childhood.  Now it’s just called Type 1 or T1D.  I’ve been T1D for forty-five years now.  I’ve been on an Insulin pump for the last 20 years and started a Continuous Glucose Monitor in the past year.

I’ve always been followed by an Endocrinologist for my Diabetes and the usual Dr.’s and Specialists that come with it.  About 10 years ago in 2005, I was at my Opthomologist for my regular annual visit and he said he saw something of concern in my eyes.  Alarmed, I asked what he saw and he explained he thought he was seeing the beginnings of Diabetic Retinopathy and wanted me to start seeing a specialized Opthamologist.  At that time, there was no one in that specialty in our Valley and he referred me to a colleague down in the next valley below us.  I made an appointment right away and for the next 10 years I was followed by the new specialist as he monitored my Retinopathy.

As a T1D we are at risk for microvascular complications.  The blood vessels in the eye are part of that and Retinopathy meant when the tiny vessels in my eye became blocked, my eye would generate new vessels to carry blood through the eye.  Unfortunately these new vessels are fragile and break easily.   Then the eye makes new vessels to replace those.  This process is known as reinopathy.  My opthamologist I was now seeing in the valley began monitoring me every four months and tracked the new vessel formation.  When the vessels affected my vision he would zap them with a laser to stop the growth and hopefully prevent them from continuing.

Fast forward to six months ago, a cataract in my right eye had reached the point that it was hard to drive – I couldn’t see freeway offramp signs clearly and night driving was becoming a glare of headlights.  My opthamologist referred me to his associate to assess it.  I was told a tiny risk of having a cataract removed was that the affected eye could have other problems down the road.  I didn’t really feel like I had a choice.  My driving/distance vision was interfering with my work since I had to drive long distances.  I had the surgery in December of 2015.

About a month following the surgery I noticed I had a flash in my peripheral vision.  Alarmed, I called the surgeon and he had me come in the following day.  After doing a thorough exam he explained that vitreous gel in my eye was tugging on the retina. Since the eye doesn’t really see but instead sends the images you see to your brain to be read –   each tug sent a message down the optic nerve to my brain which is in turn, was “seen” as a flash in my vision.

There was no danger at the moment.  He said the vitreous shrinks as we get older.  Yuck – I’m only in my fifties, I thought to myself.   Anyway , as it shrinks it pulls away from the retina lying on the back wall of your eye.  Usually it pulls away cleanly and people don’t really notice it.  But in some people (like me) it pulls in some places and each pull causes a flash in the vision.  But just to be sure, he referred me back to my Opthamologist in the same practice who was already monitoring my retinopathy.  Another thing to monitor I thought.  My regular opthamologist saw me the following day and concluded the same thing.  Come back in three weeks he told me, so we can keep a close eye on things.  Great.

I went back regularly for the next few months.  I had to.  The flashing lights drove me crazy.  About once every hour in my right peripheral vision it would be like a car was passing me.  Soft white light approaching, it would go across my vision and then be gone.  Unnerving to say the least. Yes, I knew what it was – retinal tugging -but now I could also Gooogle the hell out of it.  Bad thing to do.  I learned so much but also scared the pants off myself.  Basically I learned that the vitreous would tug on the retina as it shrunk, causing the flashes of light.  The flashes could go on as long as their was vitreous attached.  Some sights said six months to a year.  I asked my opthamologist about it but he was pretty noncommittal.  I realize that’s because each patient is different but a timeline would have been helpful.  My doctor was doing watchful waiting as he called it but for me, it was just driving me crazy.

With these types of eye things I realize you are kind of on your own.  The Doctors can only tell you so much because they can’t really predict what’s going to happen to each and every eye they examine.  They can give you guidelines but that’s about all.  Finally about three months into the watchful waiting, I had had enough.  The flashes of light had not slowed down.  They still came regularly about every hour or so.  Each time I’d wonder, is this the last one.  In the back of my mind was what I’d learned Googling, that the tugging could cause a hole or tear in the retina.  Spots, floaters, a veil or curtain across your vision – that would be my only sign that the retina had a tear and that would be an eye emergency.

So in April, I came to realize I needed more answers.  After another frustrating appointment where my Doctor did a thorough eye exam and then studied all the latest images of my eye, he said everything was quiet.  I wanted to explode.  I’m having flashes every hour I reminded him.  I’m worried that this will will tear when I’m away from home, at work or even on a trip.  How long will this go on?  No answers.  I mentioned things I had learned from my internet searches.  A vitrecttomy, retinal repair.  Oh you don’t want to have those he told me.  No, I certainly didn’t but this watchful waiting was taking it’s toll.  At least I wanted a guideline of what he was looking for and what his plan was to address it.  I was so frustrated.  He had been following me for 10 years and now I felt like he didn’t know or want to let me know what the plan was.  This was my vision we were talking about!

I came home that day and developed a new  plan.  I was already part of UCLA for my diabetes care.  I was being followed by an Endocrinologist through their Diabetes program and I was pretty happy.  Dr. Ahn was following my pump therapy and had convinced me to start Continuous Glucose Monitoring to bring my A1C into tighter control.  We were doing that and I could see the results in my numbers.  It made sense if UCLA was able to do this for my diabetes that they must have something they could do for eyes as well.  I went online and learned that they did.  They had something called the Jules Stein Eye Institute.  I called them that very day.  After running my insurance I was told I could make an appointment. As luck would have it, they had an opening in two weeks with one of their opthomologists.  I had just seen my Dr., so this new appt. would coincide with what would have been my next follow up.  I actually felt relieved.  Someone had once told me years ago, that to get the best care for my diabetes I must go to the Big House.  When I looked puzzled, he explained that the Big House is any hospital affiliated with a teaching institution.  It would be the place where clinical trials and new research was being conducted. Doctors there would be at the cutting edge of treatment and patients could benefit from knowing that they were getting the latest care.   In LA, UCLA would certainly qualify as  a Big House.  I chose them for my Diabetes Care.  Now it made sense to choose them for my eye care.