“A rose by any other name…” DiabetesDude

“A rose by any other name…”

Shakespeare’s Juliet Capulet expressed that saying when trying to show that Romeo, regardless of his family’s name and rival to her own family, would still be Romeo to her. So what does this have to do with diabetes? Bear with me and it will become clear.

It seems as of late there have been more independent blood glucose monitor companies popping up in the marketplace. Competition is always good. Test strips have always been a cash cow for the manufacturer. Strip prices range from $9.00 to $87.50* for 50 strips. You can see the spread in the American Diabetes Associations 2018 Consumer Guide where they profile 80 meters currently on the market. If you are looking for a new meter or system then check out the guide. As i used to say to my disease management clients when they ask which is the best? The answer was always an unbiased “The one your insurance pays the most towards the cost of testing.” Sad, but for most PWD’s, the cold truth.

A couple of months ago I was paying $35 in co-pay for my OneTouch strips. OneTouch was the only meter my insurance company covered AND they limited the total number of strips I could get in a month. While browsing the pharmacy at my local Walmart I stumbled upon the ReLion Premier Blu meter. I could get 100 strips for $17.88! When I used the last OneTouch strip I switched to the Premier Blu and saved $17.00. I think it was more of an “FU” to the insurance company but regardless, it felt good to have a say in which meter I used.

Last year I started seeing online advertisements for a new testing solution, The One Drop. A slick, futuristic looking meter and leather holster for the meter, strips and lancing device. Best of all, it included unlimited test strips. You heard that right. Unlimited test strips! Test to your heart’s desire! OneDrop had developed a monthly subscription based program. Genius! Let the competition begin. Slowly, I began to see people posting on Instagram about their new meter. Social media was alive with PWD’s celebrating this new revolution in testing freedom. No more would insurance companies set caps on how many strips we should use in a month.

Then in early 2018 I started seeing an ad on Instagram for the Dario meter. See, I said the competition would start. The Dario was completely different from the OneDrop, or any meter for that fact. Back in the 80’s Exactech developed a slim, pen-like glucose meter. It was really cool and when you put it in your shirt pocket it looked just like another pen in your pocket. Problem was you still needed to carry the individually foil wrapped strips and lancing device separately. Later Abbott developed the Precision pen. It had the same flaw.

Back to Dario. Their design team truly did a 360 view of the aesthetic, function and form of their product. This meter, et al, is completely self contained. It is the “Optimus Prime” of the new generation of glucose meters. And if that wasn’t the bee’s knees, the actual meter component plugs into your smart-phone’s 3.5mm headphone jack. And communicates with their logging app. (At the moment, their product only works on Apple iPhones and select Samsung Androids.) Keep checking their site for development of additional Android model compatibility.

Fear not my fellow Android devotees, Center Health came to the party a short while ago. They brought the “Nano”, not to be confused with Accu-Chek’s ‘Nano’, to the party. This device is similar to the Dario in that it plugs into the headphone jack to test your glucose soample and then interface with the Center app to log the result along with carbs quick and long acting insulins, exercise and mood.

It is not self contained like the Dario so you still need to carry the accessories in a separate case. At this writing there is no way to export results to share with your endo. Ali, one of the founders, said they are working on that feature for the near future. The graphing display is easy to read and can easily be interpreted by your doc scrolling through the results on your phone’s screen. The Nano is also a subscription plan. Cost varies based on how many strips you use. I opted for the unlimited plan.

There is a Dark Horse at the table from iHealth Labs – the “Align”. This meter is closer in design to the Nano than the Dario, but still does the job. The step up for the Align is you can export the data.

The meter itself is only $16.95 and comes with 4 different color bands to personalize the simple white design. The strips are $12.50 for 50.

Lastly, the most recent entry is an industry giant, Accu-chek Guide. This is a stand alone meter that interfaces wirelessly with the “mySugr” Pro app. In addition to the mySugr app you also receive access to a Certified Diabetes Educator when you need them, and unlimited test strips.

One cool feature is that the mySugr app reports back to Accu-Chek and alerts them to when you need to have more strips delivered. You never have to remember to order strips or be without because you ordered them late. This is a subscription program and will cost you $39.99/month.

How would Ms. Capulet describe this freshman class of boutique meters? Bottom line is they all have one function – test your glucose so you can manage your diabetes. It is refreshing to see that there are more options available now to tweak and customize your testing experience and technology is finally starting to become affordable that these new entries can make their product as equally attractive in cost as design. I think that Ms. Capulet would stand her ground and say “A rose by another other name would still smell as sweet.”

*The Accu-chek Nano is the most expensive strip in the 2018 Consumer Guide.

Disclaimer: I do not own the copyright on the images used here in and are only for editorial display. I am not affiliated with any of the companies discussed in this blog nor do I receive any compensation from any of the companies.

A usual, please like, follow and share my posts. If you liked my post please leave me a message and let me know. Didn’t like it? Leave me a message and let me know that too. Either way thanks for getting this far on the journey!

DiabetesDude

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A Real Pain in the Arse!

(This entry may be considered a TMI post so if you are easily bothered by the discussion of bodily functions then I suggest you wait until the next entry. Otherwise, “Lead on MacDuff!”)

Complications.

From the minute you are told the news that you have developed diabetes you learn about the myriad of complications that come along with this condition: retinopathy, neuropathy, gastroparesis, nephropathy, heart disease, ketoacidosis, hyperglycemia, hypoglycemia, to name the most common ones. There is one that occurs that really isn’t considered a complication but in my opinion, should be.  The one I am referring to is side effects of medication used to treat diabetes.  We all know that anti-diabetes medications carry the risk of low-blood sugar (hypoglycemia). That is all well and good as I would expect that to be the case. But there are other medications used to manage diabetes that aren’t anti-diabetes medications. Namely, the medication class of “gliflozins” or SGLT-2 Inhibitors. This class includes,

  • Invokana (canaglifloziin),
  • Farxiga (dapagliflozin),
  • Jardiance (empagliflozin) and
  • Steglatro (ertugliflozin).

These medications interfere with the re-absorption of glucose through the kidney and thus it allows for the excess glucose to be removed in the urine. This lowers the glucose in the blood. These medications are usually prescribed for management of Type 2 diabetes but may be prescribed for the management of Type 1 diabetes.  The most common side effect, and the one that usually precipitates the patient being taken off the medication is a genital yeast infection.  Now this makes sense because there is glucose being removed from the bladder via urine. Any residual urine can feed the natural yeast found on the body and before you know it you have a yeast infection that is most uncomfortable, not to mention irritating. Stopping the medication and treating the infection will resolve the problem.

There is another side-effect that they don’t really discuss and that is dehydration.  In order for the medication to get rid of the excess glucose it has to pull fluid from the body to flush the glucose out. I don’t know the statistics on this but can only tell you my personal experience.  When I was initially prescribed Invokana by my endocrinologist, it was a miracle drug! My A1C was 9%. I was willing and eager to try whatever would work. Boy did it work! Not only was my next A1C down to 7% but most of the fluid in my legs and feet was gone.  The down side though, was I was thirsty all the time.  The cardinal rule is if you are thirsty you are already dehydrated.  I was drinking all I could drink in a day.  Lets fast forward to the new year. Insurance decides it will not cover Invokana and I had to switch to Jardiance. (I hate the games they play with medication coverage. I was put on Invokana because they would not pay for Jardiance. This “Coverage2Control” needs to expand beyond the choice of insulin pump and CGM. It needs to include ALL medications and therapies related to the management of diabetes.) Fine. Remember that side effect of the genital rash? Well I was taking stock in the anti-fungal medication manufacturers. In addition, my blood sugars were not as good as when I had been on Invokana. I persevered until my next appointment with the Endo. Needless to say the Jardiance was discontinued and the infection resolved as it should, with medication.  I was given a new script for Invokana. I knew it would require a Prior Authorization, also known as a PA, in the insurance Pharmacy Benefit Management (PBM) world. For the time being I was without my beloved Invokana.

Two months roll by and the prior authorization has still not been resolved. But now I have a new problem. Both of my legs are swollen to the point that they are weeping fluid and they hurt to even touch. I do have PVD or Peripheral Vascular Disease.  I saw my PCP on a Saturday morning urgent visit. He decided that I probably had cellulitis in my legs since they were also warm. I discussed that the Endo had me on Invokana and how much better my diabetes was on it, but I was out of it because of the PA. My PCP decided to put me on an antibiotic and an extended course of prednisone. He got me a bag of Invokana of both 100mg and 300mg bottles. He said most of his patients have stopped it because it dries them out too much. I was very aware of that. So I asked him “Since you are putting me on prednisone should I take the 300mg Invokana until the prednisone is finished?”  He thought for a second then said,”Why not? It may work.” Off I went to get my scripts filled and then back home to rest my legs.

I am here to tell you that the 300mg Invokana did indeed keep my blood sugars in check. However, the increased dose also dried the hell out of my system. All the excess fluid in my body was leaving through my bladder. What that means though, is I had very little fluid for my bowels. That is not where you want to skimp on fluid.  Needless to say, I was now constipated! If you have never been constipated then count yourself blessed and go have another glass of water!  Constipation, in and of itself, is not a bad thing. It is a warning sign from your body that you need to drink more. A LOT MORE! I was already drinking as much as I could and I was eating adequate fiber. I added Benefiber to my drink bottles for extra fiber. No luck. Fortunately, although my stool was painful to evacuate, I was still evacuating. However, because of the straining I created a thrombosed hemorrhoid. Ladies, if you have been pregnant then chances are you understand the discomfort. I have had hemorrhoids before so I knew what I was experiencing. However, no amount of fluid or fiber resolved this issue and eventually the pain associated with having a bowel movement was excruciating to the point that I nearly passed out on several occasions.

Something had to be done. Most people who know me also know that I do not go to the doctor unless something is really wrong. I had reached that point. Fortunately I did not need a referral to see a specialist. I was on the phone Thursday morning. The earliest they could give me was the following Monday. I took it!

So there I am in the exam room.  The doctor walks in, introduces himself and says “So why are you here?” “Well, I believe I have a hemorrhoid.” “Sounds like you have a real pain in the ass! What makes you believe that?” “Well when I go to the bathroom it hurts.” “Does it hurt to touch?”  “Yes, very much.”  “Well then you have a hemorrhoid.” “Great. But it hurts on the inside too.” “OK. Well then let’s take a look.

I won’t go through the details but he confirmed that I indeed did have a hemorrhoid but the better part of the pain was because I had an anal fissure as well. In case you didn’t click the link, an anal fissure is a tear in the mucous membrane lining the rectum. So every time you have a movement the tissue stretches open again. Having a bowel movement is a whole new experience in pain. Also, in case you didn’t realize it, when you pas gas your anus open to release the gas. A whole other experience in pain!

Healing is a slow process. 1 step forward and 2 steps back. But at least there is progress forward.

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     Let’s bring this back full circle.  I was talking about complications of diabetes. The side-effects of the treatments should be a category all their own. Despite that they do not have a direct impact on the diabetes, per se, they impact the patient’s quality of life. I will not stop taking the Invokana because it is the only thing in nearly 40 years that has had such a positive impact on my blood sugars and for that I am willing to live on Miralax and 2 gallons of water water a day.


If you are on Invokana or any of the other SGLT-2 Inhibitors and have similar experiences I would like to hear how you handled it. Did you modify your lifestyle or just stop taking it?

     As always, if you liked this post leave me a message – better yet, subscribe so you know when the next one hits the net. If you didn’t like it – leave me a message and tell me. Subscribe so you can hate on the next post or maybe I will change your mind. Nonetheless, thanks for reading. Don’t forget to share this post.

Father Knows Best…?

Next Sunday is Father’s Day here in the United States.  I no longer have the opportunity to spend this day with my father. What I do have though, are memories of time spent with him.  I can easily remember the times that were good. It seems that after he passed away my brain compartmentalized any bad memories. My father and I had our moments both good and bad. So, let me tell you about my father’s involvement in my care and management of diabetes.

When I was diagnosed my father didn’t really participate in the daily trials and tribulations of this new routine in our household. I think he felt that since my mother was in the medical field, and my maternal  grandmother being a retired nurse, that he only needed to stay employed so that we had health insurance. That was his role, in the beginning.  I do remember overhearing a conversation between him and my mother that upon telling my paternal grandmother that I was diagnosed with diabetes her response was “Oh, well he will out grow it.” I wonder when that is going to happen? It has been almost 40 years! My grandmother eventually died of pancreatic cancer. Ironic, huh?

My father wasn’t an athletic type so I don’t think we ever threw a ball around or did any other kind of sport that fathers and sons participated in.  That was OK with me though. I really wasn’t an athletic child either. However, my father’s idea of exercise was yard work.  He was obsessed with mowing the lawn, raking the lawn, pruning bushes, washing windows and anything else you could do outside on a clear day. I hated yard work! But that was his contribution to the EDI formula I came home from the hospital with. In case you aren’t familiar with that acronym:

Exercise + Diet + Insulin = Controlled Blood Sugar

Eventually, the research and development teams in the diabetes scientific community made self blood glucose monitoring available to the consumer. Or at least to the consumer who could afford it. I was fortunate. My father worked for a small business that did well and my father was compensated equally well. In addition, his boss’ wife was also a T1D. At that time we were called juvenile onset diabetic. This is important because what ever his wife had he made sure that my father obtained it for me. A new self blood glucose testing meter arrived into my life.

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The Glucoscan II from LifeScan

It wasn’t perfect but it sure beat having to test urine every time you ate. Again, this was the extent of my father’s participation. He was the provider. I don’t think he ever gave me an injection or tested my blood. “Here’s your meter. Now go have fun…”

Another advantage of my father’s boss’ wife having T1D was I also went to one of the premiere Diabetologists in the Baltimore area. Why? Because that’s where his wife went. So, appointments were scheduled and on the given day my father would schlep me to the doctors office, before school. All my appointments with the doctor were fasting. There we were in the waiting room with all the other T1D patients. In addition to all having type one diabetes, we all were sitting there with our breakfasts in brown bags so we could eat as soon as the appointment was over. My father never went in to the exam room, instead he would wait in the waiting area for me to come out.  The doctor would have a brief conversation with him. Little did the doctor know that my father didn’t understand a thing he said. I learned early that I had to pay attention to what was being said both in and out of the exam room so I could report back to my mother, the Chief Medical Officer, in the house. But, my father took the time out of his 60+ hour work week to take me to the doctor and then back to school.

It pretty much went on like that. My mother ran the medical side and my father was the quartermaster and accounting department.

Now, I am a teenager. I go to school in the city, which is a 45 minute school bus ride. The only time my father ever drove me to school was after I had my diabetes appointment. That actually worked out well for him because he didn’t need to double back when I was in middle school. Life, again, went on as usual. Like I said earlier, I wasn’t an athletic kid so sports weren’t my thing. But, I came from a musical performance family. I could sing. Drama club here I come! This was going to be a new experience because up until this point in time, I was usually home by 4PM and had food at my disposal should I have a hypo. Now I was in the auditorium until 6PM with no access to food. Fortunately, the CMO was also the catering manager and always packed me extra food for snack and hypo. The deal I had with my parents was I could do drama but I had to find my own way home. Only on occasion, did my father have to pick me up from rehearsal. Things worked out pretty well. I do not recall any major issues and I always found a ride home with the exception of probably 2 or 3 times.

While I was rehearsing for “Man of La Mancha”, my maternal grandmother was planning a trip to Europe to see the special anniversary production of The Oberammergau Passion Play, in Oberammergau, Germany. When my 14th birthday rolled around her gift to me was to accompany her on this 15 day trip. I was so excited. I could hardly wait for the school year to end.

The school year came to an end. Two weeks before we were scheduled to leave my grandmother took ill and was diagnosed with colon cancer.  She was not going to be able to go on the trip. In steps my father. He would take her place. This was a once in a lifetime experience and he wanted me to experience it.  Off he went to Washington, DC to stand in line to get an expedited passport.

Remember, my father had no real experience with diabetes and he and I were going to be on a tour in a foreign country for 15 days. It was sink or swim. So with passports in hand and a bag of extra medical supplies, a letter from my doctor explaining the supplies and supply of Lifesavers in my carry on – we left for Geneva with the rest of our tour group.

My father learned how to ask for drinks without sugar, also how to say “I need sugar my son is diabetic”, and how to order diet Coke®. Diet Coke® was available in Europe but not in the United States yet. It was great to find a restaurant with it. Otherwise, I learned to drink tea without sweetener. Fortunately, this tour was heavy on walking all over hither and yon so I never really had any issues with low blood sugar because all the carb heavy foods we ate were walked off – and sometimes they were walked off as I was eating them! The tour had a few “free days” included where there were no tours scheduled and we could do as we pleased. One of those days was in Rome. While the rest of the group headed off on a private tour, we declined and spent the day walking around Rome. He was stationed in Europe while he was in the Air Force and had taken a trip to Rome on leave. so as we walked he would tell me stories about his time in Rome. Walking around Rome with him was one of the highlights of the trip.

AirForce1

We made it through the 15 days and returned to the US without incident. (Well, we had a minor incident in the Geneva airport…but that is a story for another time.) My father always made sure I had my meter and lifesavers and he trusted that I would let him know if I was getting low. (My grandmother had her surgery and recovered without incident. She enjoyed seeing all the photos we took, 35 rolls, and hearing about the Passion Play that she had longed to see since seeing it in the orphanage, as a child.)

Again, things returned to the status quo at our house. I went back to managing my diabetes independently, with guidance from my Endo, my mother continued to put food on the table at prescribed hours and my father continued to make sure that I had everything I needed to manage my condition. My father would buy me wholesale quantities of Smucker’s sugar-free jelly pods like they have in restaurants. Single serve containers. This was his contribution to making life better for me.

When I went off to school the cargo I hauled to Winchester, VA included a wholesale case of Trident Gum, Cheese Crackers with Peanut Butter and a few other boxes of things he thought I may need. I never chewed the gum. I would give it away to people who would come to the room to visit. My father’s intentions were always good.

And that is how things went thereafter. My father never had a direct role in caring for me but without the role he played my management and my life experience with diabetes would have been a whole lot different

After the 15 days in Europe, our relationship changed. Although I was always my “mother’s son” after spending that time together we really bonded and my father became my best friend. That is not to say we never had a row or difference of opinions – because we had a lot of those, but in the end it always came back to him and me in Europe, together.

I always had my father’s back regardless of what was happening with him. Life was not always good to him but I did what I could to lessen those burdens. We would meet for lunch a lot. It was like being back in Europe. Him and me, eating together and talking. I gave my father a good bit of counsel during those lunches and I learned to listen to what he was experiencing in life. Perhaps later I will tell you more about my father and his trials.

My parents eventually moved to Florida, as all good senior citizens do when they reach a certain age. As families do, we had a row, or more specifically, my mother and I had a row which resulted in me not talking to her for several months. Eventually, my father stopped talking my calls because he didn’t want to be in the middle because my mother would always ask if it was me. So, he just didn’t answer the phone – the down side of caller ID.  Then, on my way home from work, which is when I usually talked with my father, I got a call from my mother. My father has cancer of the bladder. The doctor said it is in situ at the moment and they were going to do Botox treatments in the next week and things should be OK. That ended the row and I went into nurse mode looking up all I could on his therapy and the prognosis. Therapy was usually successful and the prognosis was good. Long story short – the in situ carcinoma had quickly grown and was now invading the bladder, prostate and urethra. The only option was to remove the bladder, prostate and urethra and created an ileal conduit diversion cystotomy – in lay terms, he was going to pee in a bag from now on.

Picture 002
Me and my father after he recovered from his surgery and chemotherapy and was cancer-free.

I wouldn’t see my father again after this visit. Despite being cancer-free my father continued to have pain in his abdomen and was not enjoying the quality of life he had been expecting. He was taking pain meds to control the pain in his belly. The best the doctors could say was it was idiopathic.  They scheduled him for an MRI with contrast to take one last look and see if there was anything they ere missing. Something got snafu’d in the scheduling and he went to the hospital for the procedure and was turned away to come back the next day. I firmly believe that my father had “survivor’s guilt“. He had prepared himself to die from the cancer, and now here he was cancer-free. I spoke to him on the phone that night. Sometimes I had to be firm with my father and give it to him straight. He didn’t feel well, and was probably developing a cold, and he was upset over the snafu.  I told him, quite firmly, “You will get through this.” He then said to me “I can’t talk to you any more.” and handed the phone to my mother.  We finished the conversation and said good night. About 11 AM the next day I received a call from my mother. All she could say was “Your father is dead.” I told her I would be there as soon as I could get a flight. I then called my brother and we made arrangements to meet in Tampa.  I believe that my father overdosed on his meds that night because he was just tire of living.  When I hung up from my brother I was no long calm and collected. I don’t know where it came from but it was primal, raw emotion and it was erupting from deep down inside. By the time my brother and I had arrived the cremation service had already come and collected my father. Since he was under a doctor’s care there was no autopsy. I can tell you that I wasn’t much better at his memorial service. I never realized just how much I loved my father and what an important part he played in my life, until he was gone.

Here are few more pics of my father:

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My father was Dewey the clown.
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This was the standard uniform for my father – a jump suit in many colors.
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I took my parents to Fulton’s Crab House in Downtown Disney.
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My father in 1968. I know it was 1968 because that red haired baby is me.

One Tough Motha…!

(This post was written on Mother’s Day 2018, but WordPress was having issues and I couldn’t get it to post. My apologies for not getting it up on time.)

This post goes out to all the Mothas’ out there in the DOC (Diabetes Online Community). Whether they are PWDs themselves, or Mothers of children with diabetes.

Being a mother is a tough job all on it’s own then throw in a chronic condition that needs monitoring and tweaking 24/7 and Mom has just taken on another full-time job! My hat goes off to you and I stand and salute you as well.

When I was diagnosed my mother was studying to be a medical assistant.  I was her study partner. I was almost 11 when I was diagnosed. I would go to school bandying words like sternocleidomastoid, sphygmomanometer and the likes. I had access to her school books and took it upon myself to read every entry in her books that pertained to diabetes. Actually, back then, there wasn’t a lot of information beyond the basics. So not only was my mother a full-time wife and mother to two children, my brother was 19 and in college, but she was also a full-time student and now the mother of a child with Type 1 diabetes.

Growing up I do not remember my mother being overtly worried about my diabetes. That isn’t saying that she wasn’t. I think I got my perspective on my condition from how she handled it. It was now my life.  I was educated well through my inpatient education and summer camp. She trusted that I knew when I was in “trouble”. She never panicked. She always took things in stride. “This too shall pass”. We moved on. She always wanted to know what my results were and how I was feeling, etc, but it was always conversational and never probing or invasive. This was my condition and she was only a bystander. Only on occasion did I have her give me my insulin – in the beginning I wasn’t comfortable injecting in my butt… just couldn’t maneuver it. Lastly, I refused to inject in my abdomen. It was a game of chicken peck. My belly was her territory, if only for a year.

As a camp nurse, we did midnight rounds on every camper. I honestly cannot say if my mother ever checked my glucose while I was asleep.  I know that it never happened in the first 2 years because meters did not exist for the consumer. Again, my hat goes off to those mothers who set their alarms for the 2 AM test.

Back then it was stressed that mealtimes be consistent so as to maintain a predictable schedule and keep the insulin on schedule as well. That was my mother’s responsibility. Like clock work, breakfast was always 6:30 AM during the week and 8 AM on Saturday and Sunday. Portions were measured out according to the official American Diabetes Association Dietary Exchange List. We always had fruit with dinner, usually dessert – I learned to like pear halves in pear juice without sugar. Lunches were always pretty predictable – PB& Estee sugar-free jelly (Polaner All Fruit had not been created yet.), tuna fish or ham sandwich (with lettuce), piece of fruit and a pre-measured amount of chips. If it was a bag lunch then there was always a pack or two of peanut butter and cheese crackers for snack – back then when you took NPH you needed to feed the insulin during the day. My mother was a rock star at keeping it all together and making sure I was fed on schedule – whether I wanted to eat or not. All while working a full-time job now in a busy OB-GYN office, being a wife to my father who worked a stressful job that kept at work more than 40 hours a week and keeping up the house.

My mother never let diabetes be a crutch.  There was nothing I could not do (especially if I didn’t want to) – short of flying a plane, driving a big rigs, being in law enforcement or the military. Diabetes was just something that enveloped me but didn’t define me – it was just, Me. She always treated my diabetes as normal. The diet wasn’t anything special – it was plenty of calories, we already drank TAB and used Sweet-N-Low/saccharine, ate non-sugar cereals like Cheerios and Corn Flakes. the only change that we really made was using the exchange list and portion size. It was a healthy diet that my mother made everyone eat.  I don’t think my brother or my father suffered any from it.

I would like to say that my mother was in my corner when things got rocky socially. I know she would have been but I never experienced the discrimination and bullying that the youth and young adults of today are experiencing. I never hid my diabetes. I was always open about it. That is not to say that I preached it, but I didn’t hide. I know had I had any issues my mother would have been there fighting hard and loud to remedy the situation.

My mother passed away a couple of years ago. I miss her everyday. I know that she took the burden of making sure everything was right for me so that I could get up in the morning and have as normal a day as the other kids on the bus. I am truly sorry that I never took the opportunity to ask her about how she felt when I was diagnosed and what stress it placed on her.

So here is your take-away: If you don’t know how your mother feels because she has never told you, ask her. Start a conversation. You may learn something whether you are 12 or 52. Then give her a big hug and a kiss and tell her you love her because you never know when the day will come that you will not be able to do that again.

Next month you will learn about my father’s involvement with my diagnosis and care.

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Until next time – Be safe and do good!

Peace+

Tim (the DiabetesDude)

The State of Diabetes

The French author, Jean-Baptiste Alphonse Karr is credited with saying:

 plus ça change, plus c’est la même chose”

which when translated means “the more things change the more they stay the same”.  This phrase lends itself very well to describing the state of diabetes, research, treatment and prevention.  Last week was my 39th Diaversary. Today, as I write this post, I am 50 years and 13 hours old.  My world changed 6 days before my 11th birthday. For most intents and purposes, my perspective has mostly been about having diabetes, day in and day out. Like the shampoo bottles say “Lather. Rinse. Repeat.”

When I was diagnosed things were a lot simpler than they are now.  Please allow me to hit the highlights below:

Available Insulin in 1979
Short Acting Intermediate Acting Long Acting
 Regular – Beef  NPH – Beef  Lente – Beef
 Regular – Pork  NPH – Pork  Lente – Pork
 Regular – Beef/Pork  NPH – Beef/Pork  Lente – Beef/Pork

Recognize any of these? They don’t exist any longer. You can still find their cousin the rDNA biosynthetic human based insulins like Humulin or Novolin. The options were slim and there were only two major manufacturers in the game, Eli Lilly and NovoNordisk.

My parents had top of the line insurance and at that time I wasn’t concerned with the cost of the insulin. I know that even in the scope of things, the insulin was not astronomical in price.  I used “R” and “N” combined. I don’t think I used more than a bottle of each in a month. I remember, as a teen going to the pharmacy and getting my insulin, and the whole thing cost less than $20.

Iletinn2
Eli Lilly Pork insulin, NPH

Let’s fast forward to today. My Humalog Kwik pen , 30 day supply, retails for $2,086.09. My Tujeo is $916.59 for thirty days.  My  co-pay is $40 for each. I haven’t purchased needles or pen tip in several years because I inherited over 500 tips a couple of years ago, and I re-use them until they can’t be used. (Don’t shake your head. You know what I am saying.) If insulin was the ONLY medication I used, and I did not test, my monthly expenditure would be $3002.68.  I have been unemployed and had to pay out of pocket before getting assistance.

Back to 1979.  I believe that I was sent home from the hospital with a U-100, 1cc 25G 5/8″ disposable insulin syringe. There was one BIG manufacturer of insulin syringes, Becton-Dickinson (BD).  They had the insulin syringe market wrapped up. Terumo and Monoject were in the race but were happy to have the hospital syringe market.  BD had a quality syringe.  I remember having to inject at a 45° to make sure the insulin was delivered into the subcutaneous layer and not muscle. Now the needles are 30-31 Guage and so short they are referred to as ‘shorts’ or ‘nano’. No longer do you need to inject at 45°. Perpendicular all day long!

monoject-insulin-syringe-with-needle-rigid-pack-a29
Monoject Syringe and needle with rigid pack.

Part of my luggage, coming home from the hospital, included the ever popular Clinitest home chemistry set and it’s little brother the Acetest Ketone Test Kit:

testing_supplies
Clinitest Urine GLucose Test Kit and the Acetest Ketone Urine Test Kit

 

My doctor also wanted to know the volume every time I urinated. So, I also had a graduated pitcher, in the bathroom, along with my marble notebook, to document it all.  Going to the bathroom took 10 minutes sometimes! This was part and parcel for me for several years.

Eventually, The home self-blood glucose meter (SBGM) became “affordable”. I remember my parents saying that my meter was roughly $300. That is the equivalent of $770 today.  I do not think that insurance covered it at the time. I may be wrong. What did I know? I was a teenager.  What I do remember growing up was that deciding on which meter to use was never a question of coverage.  I picked a meter system and insurance paid for it.  Fast forward to today.  I know in my plan, I have the choice of any of the OneTouch meters. Period.  And even then they restrict the number of test strips I can use in a month. When I was a telephonic disease management nurse my patients used to ask me “What is the best meter I should get?”  My answer was always the same, “Let’s look and see what your plan will cover. That will be the best one for you.” A little bit of trivia for you: The “Accu-Chek” meter, by Roche, is the clinical name for requesting a blood sugar value, whether from a vein or a fingertip. “Get an Accu-Chek on Mrs. Jones.” Regardless of the meter being used. The same as when you are making a photocopy you say you are making a Xerox despite the machine being another brand.

There is been a petition and campaign circulating called “Coverage2Control”. The JDRF started the campaign which targets these three factors:

“1) keeping out-of-pocket costs for insulin and diabetes management tools predictable and reasonable, 2) giving people the freedom to choose the insulin pump that’s right for them; and 3) covering all life-saving technology, including artificial pancreas systems.”

You can read the entire message from JDRF here.

We are still taking insulin.  Now it costs a whole heck of a lot more!

We are still testing. Now the supplies cost a whole heck of a lot more!

We have a lot of products available on the market to help manage our condition. Unfortunately, the insurance industry prevents us from being able to have the choice to use the products that will work best for us, not just the products that have the highest profit margin for the insurance company. Again, to do your best it costs a whole heck of a lot more!

The more things change. The more they stay the same!

You get the picture!

 

Stay safe. Do good!

Peace+

Tim, aka The DiabetesDude

 

What do these things have in common?

Can you tell me what the common denominator is in the four items listed below:

  1. Your Amazon Prime membership
  2. A membership to the local gym
  3. A subscription to your favorite magazine
  4. Renewed funding for the Special Diabetes Program-Type 1

Got your answer?

I hope that you said all these things require that you renew them, after consideration.  Do you really use your Prime membership enough to justify the $99/year?  Do you really go to the gym frequently enough to justify the monthly fee?  How many of those magazines are still sitting in a pile, never having been read? Lastly, Have all the cases of Type 1 diabetes been cured and no more people will ever suffer from it again?

I really think that this is a no-brainer. Maybe I am wrong?  In 2015 Congress reauthorized the funding for the Special Diabetes Program for Indians (SDPI), which includes the Special Diabetes Program-Type 1, for 2 years. The quote below is from the American Diabetes Association Website, Diabetes.org:

“The American Diabetes Association has long been a leader and partner in efforts to increase the federal commitment to cure and prevent diabetes and to address the diabetes epidemic in disproportionately impacted populations. Since 1997, a key component of these efforts has been the Special Diabetes Program for Indians (SDPI) at the Indian Health Service (IHS) and the Special Statutory Funding Program for Type 1 Diabetes Research (SDP-type1) at the National Institutes of Health (NIH). These two programs represent a significant contribution from the federal government to combat, prevent and cure diabetes. Both of these vital programs require periodic Congressional re-authorization.”

The Bill (S.747) (H.R. 2545) to reauthorize the program for 2 more years was introduced to Congress on March 28, 2017. The 2015 Bill would expire on September 30, 2017.  The funding was extended to December 31, 2017. Congress had to think about it before giving it a thumbs up for 2 more years. Now, there are two thoughts that run through my mind:

  1. Congress being the omniscient legislators that they are, know something that we don’t. Perhaps they know that a cure is finally sitting in a research lab somewhere that needs until New Year’s Ever of 2017 to gestate and on January 1, 2018 there will be no more need for funding because the cure and preventative measures will roll out to the world, finally ridding the globe of this insidious disease.  I mean, every newly diagnosed PWD has been told “In 10 years we will have a cure for you and you will never have to worry about it again!”
  2. The other thought is that not one member in the Senate or the House of Representatives either has diabetes or has a relative with diabetes, so they really are not impacted, directly or indirectly, by the effects of this disease, including emotional, psychological, physical and let’s not forget financial.  It is damn expensive to be able to afford to stay alive!

Congress approves and earmarks millions and billions of dollars a year for programs, studies and grants that are unnecessary and sometimes outright ridiculous.  You can do the research on your own – I found too many examples to include,  None of which included a study or program that involved saving the world population from a deadly disease – at this point it could be any disease, not just diabetes. Not ONE!  But congress funded a production of Hamlet, in a field, in New York. The characters were all played by DOGS! What?!?!?! (I had to throw this one in because it was just so out there.)

Get your act together Congress!  You were elected by the people of your state, to represent them and create and pass legislation that will benefit, protect and hopefully enhance their lives. We have to start with the basic needs. Until everyone across this place we call the United States of America has enough food to eat, a safe place to sleep, a way to earn an adequate income and last but not least, affordable access to health care to allow them to maintain their ability to live and breathe. Until then, forget about the non-essential requests that come across your desk. Renewing the Special Diabetes Program for Indians & the Special Diabetes Program – Type 1 should not be an option. It should exist in perpetuity until there is both a way to prevent it AND cure those who already suffer from it!

As a constituent, human being, PWD or a loved one of a PWD, here is how YOU can help:

Tell your elected representative(s) in Congress to support the SDP on January 19th, 2018.   Then share it with your friends and family, Instagram, Twitter, FaceBook, anyway you can get this out there.  Remind your representative in Washington that they are elected and may be replaced by someone who SUPPORTS the SDP!

 

Thanks for stopping by. I hope you got something out of this rant. If you did let me know in the comments. Follow me because I have plenty more to come. Tell someone you know to stop by. Maybe they will like it too.  I you didn’t like it – leave me a comment. I am always open to other ideas.

Stay safe. Do good!

Peace+

Tim aka “The DiabetesDude”

Counselor’s Last Stand

Welcome back!  My last few entries have been a little heavy so I decided to lighten it up a little bit.  I hope you enjoy this installment!

I have held many non-traditional positions in my 29 years as a Registered Nurse but none have been as fun as being a camp nurse at a residential camp for children with diabetes.  I spent 2 summers at camp.  My first summer was shortly after I graduated nursing school.  I had been a camper at Camp Glyndon, in Reisterstown, Maryland the year after I was diagnosed.  It was the life experience that had the most impact on my life as a diabetic, even to this day.  I had been to summer camp before but that was prior to developing diabetes.  I had a good time. How could you not? It was located on the Chesapeake Bay on the Eastern Shore of Maryland. But Glyndon was different. All the kids had diabetes. Many of the staff, as well, were diabetics themselves.  A hypo was not a catastrophe or something that induced panic and hand wringing among the adults.  You had a hypo – as is magical, someone appeared with a fanny pack of antidotes – a meter, Lorna Doones and Glutose. While you were being tested and treated life went on around you.  No crowds of onlookers like a 10 car collision had just occurred on the highway. gathered around gawking at the kid with the pale face and sweat pouring down his head. Nope! Non of that.  Just you and your personal “St. Bernard” taking care of business. Swimming, kickball, archery, tennis, arts and crafts continued. With any luck in 10 minutes you were back in the fray.  Like I said, camp was the experience that had the most influence on how I lived the rest of my life as a PWD. So, after I became a Registered Nurse, I felt it was only right to return to camp and join the care team.  More about that summer and my first summer as a camper later.

This installment takes place many years later.  I was in between jobs, it was Spring and Glyndon was hiring for the Summer.  I applied and was hired.  By this time I had become a CDE.  The DON and I were the only CDE qualified nurses on staff. Now, because Glyndon is located outside of Baltimore and associated with Lifebridge-Sinai Hospital the camp was also a learning environment for Resident doctors who were working on their Fellowships in Endocrinology.  They would come and spend a week or two on staff learning about intensive insulin therapy, pump protocols and everything else involved with both the clinical and psycho-social aspects of living with diabetes as an adolescent in an immersive 24/7 environment.

Normally, the visiting residents bunked in the Doctor’s Cabin and the nurses bunked in the Nurse’s Cabin.  I was the only residential nurse that summer.  All the other nurses lived off campus. I had the Nurse’s Cabin all to myself for most of the Summer. The exception was the last session of camp when one of the Fellows decided he would bunk with me. Cool.  I didn’t have to stay in the 4 room cabin by myself.

Now, if you have ever been to camp you know that there are is A LOT of mischief that occurs that is usually perpetrated by the counselors. Pranks are played on other counselors, staff and sometimes the campers.  I was never the target.  That was about to change.  Word got back to me, through the grapevine, that the counselors were planning an ambush on the Nurse’s cabin that night. Because we were on call 24 hours we had to keep our front door unlocked so a counselor could get us in the event of a nocturnal hypo or other emergency.  That was just an open invitation.  I don’t like pranks in any shape or form. I especially don’t like things that interfere with me sleeping. This was definitely going to interfere with me sleeping.

That day, the Fellow and I had the morning/day shift. So, when the shift was over, after filling him in on the threat, I disappeared into town. Upon my return I was bearing two large super soaker water guns. These were the ones that held 2 liters of water.  I stashed our weapons and went to the dining hall.  I quickly located a bottle of red food coloring. The nice thing about the kitchen was everything was in institutional size. So I procured a small bottle of red food coloring and returned to the bunk.  Operation Counselor’s Last Stand was in play.

For the next hour we prepped the bunk.  The backside of the bunk abutted a tree line.  The counselors had disclosed, earlier in the season, that they would sneak in the bunk by coming through the windows in the back. (If you know me then you know that I hear everything and remember all of it because you never know when you may need that information. Case in point.) First step was to make sure that there was no access to the bunk via the back windows.  I like to play fair, most of the time, So instead of securing the windows we left them alone. What we did do was secure the room door so that it would not open from the inside. A trapped counselor was as good as no counselor. The rest would have to wait until lights out.

After lights out we returned to our bunk.  I had brought some “party poppers” with me. You never know when you might need them.  These were like the Snap & Pop things that you throw onto a hard surface and they “explode” – these, however, had strings on each end to pull them to activate. I had about 100 of them. We went to work.  We locked the far door, forcing them to use the near door.  To that door we secured one string to the door and the other string to the door frame. All 100!  Next we mixed the food coloring into the bottles of the super soakers.  We had learned form our mole that the counselors were planning to ambush us by coming to the bunk and telling us that there was an emergency in one of the cabins.  When we emerged from the bunk they would be there with water guns to assault us. As they say, “best laid plans of mice and men” or this case, counselors.

The time had come. One of the other toys I had packed for the Summer was a night vision scope. Hey, we were in the woods, I want to see whatever I can at night.  I was in my room in the front of the cabin. The lights were off and it appeared as if we had retired for the night. IN my pitch back room, I peered through my window with my night vision scope – out into the darkness.  Like creatures of the night, the counselors appeared and gathered about 20 feet away.  It was not uncommon for previous counselors to come back and visit.  As it turns out, the ring leader was one of those visitors.  He had a reputation for being a master prankster and he thought it would be fun to get one over on the Nurse and Fellow. They were all gathered around their General.  Then orders had been given and one lone counselor heads to the far door, prepared to announce the need for a medico in her bunk. Remember, the far door was locked. At this point, the Fellow and I were hiding outside our rooms, guns pumped and ready to spray.  Off to the near door she went. She turned the knob, pushed the door open and prepared to walk in. Surprise one worked like a charm, or in this case, an explosion. All 100 poppers erupted almost in unison.  As soon as the noise ceased, the troops outside realize that their General had underestimated the enemy.  The order to charge was given, literally!

They only had access through one door.  It was like shooting fish in a barrel.  They were not expecting us to be in the living room.  The plan was that we were to be asleep in our rooms. As we had anticipated, we heard the doors to the back rooms trying to be opened. Foiled!  As the counselors, and their General, herded into the living room, we erupted our guns with red colored sprays. They were taken by surprise. As quickly as they entered they ran to the other door…opened it and escaped to regroup.  We quickly made sure the doors both were locked then turned the lights on and assessed the situation.  Round one to the medicos. We checked the rooms we had secured. No enemy. But to our surprise, one of the counselors was hiding in the Fellow’s room.  He was quickly dispatched after a thorough soaking and staining.  He was ejected and we locked the door again. Lights out!

They were still out there. The General was trying to form a new plan.  They never thought that they would need a plan B. With the lights out they could not see us inside. I watched them through the night vision. I went and grabbed my camera’s flash gun. Turned it on and waited for the ready light.  In the meantime, I turned the boom box on, full volume, blasting Yello’s “Oh Yeah” on repeat.  You know Oh Yeah. The song that is played in Ferris Beuller’s Day off when the parking attendant take the car for a ride.

I watched them planning and scheming. Then they moved.  They crept up to the cabin and tried to peak through the windows.  I let them look. They couldn’t see anything. Then I took the flash gun, pressed it against the window’s glass and fired the flash. Once, twice, three times. Screams erupted from the counselors. Foiled, again!  This went on for several minutes. Finally, accepting defeat, everyone returned to their bunks and there was Peace at last.

The next morning, the Fellow and I arrived early to breakfast. Then the walk of shame began.  One by one, the counselors involved in the Counselor’s Last Stand, filed into the dining hall.  Each one stained with red food coloring.  If you have ever been stained with it you know it take days to get off your skin.  The medicos had won.  By the way, the mole was the DON.

I hope you enjoyed this little ditty.  If so then please share it with others or leave a comment and please subscribe to my blog.  If you hate it – the leave me a comment and tell me why. Then subscribe so you can see if you hate the next one.  I may surprise you.

Until next time –

Peace+

DiabetesDude

Thankful, You Say?

thanksgiving header

Yesterday was Thanksgiving Day in the United States.  A day we gather with family and/or friends for a traditional, or maybe not so traditional, meal and we share with these loved ones the things in our lives that for which we give thanks. Then all the adults quickly depart the table and head out to the pre-Black Friday sales.

So what does all this have to do with diabetes? As I blogged in the last post, November is Diabetes Awareness Month. Floating around your favorite social media site, if you are a PWD, you have probably seen the daily “Happy Diabetes Challenge” many folks are playing along and posting their answers. Perhaps you are one of them. The daily challenge for Day 23 is, you guessed it, “What are you thankful for?”  PWD’s all over the world have posted some pretty heartwarming posts of the things that make them thankful this month of Diabetes Awareness.  Being thankful for things can lift your spirits and change your perspective of your situation.

happydiabeticchallenge2018
Happy Diabetic Challenge 2018 Source unknown

I know that every night, before I go to sleep, I take inventory of my day and my activities.  Like most folks, my days are not always filled with obvious things for which I should be thankful. Case in point, while the sweet potatoes were nestled in their brown sugar bath, caramelizing to a soft and sweet finish, the sweet aroma so familiar to Thanksgiving meals, became acrid. I asked my wife how long they had been in the oven? She replied that they should be ready in a few more minutes.  Then she smelled it too.  We both went to the kitchen. She opened the oven door and in the dish, where we should have been seeing a nice orange potato with a glistening caramel glaze was a surface of black charcoal!  The oven was radiating out the obvious cause of the charcoal.  The broiler was on and the oven door was closed. (For those of you not into kitchen appliances, the oven door must remain open when using the broiler.)  Long story short – due to no fault of my wife’s, the oven’s computer controller board had malfunctioned.  The oven was now non-functioning. (This is not the first time we haven’t had an oven or cook top but that is a story for another blog.) We salvaged the potatoes under the charred top and prepared a new glaze when we arrived to our dinner destination.  So I am sure you are asking yourself, “How can you be thankful for your oven breaking on Thanksgiving?”  Well, I am thankful that it happened while we were home and were able to intervene and prevent the food from catching on fire and causing damage to our house.

But, despite all the positive vibes folks are posting, I have also seen folks posting how much they hate this disease and how it has changed their lives, they didn’t ask for it, it is expensive, etc.  You know the downside.  Most of the posts I encounter are from the “young ‘uns” who have had their diagnosis for less than 5 years.  I would never wish that anyone be diagnosed with diabetes, especially Type 1. It is a devastating and life changing condition. But, if I could change when I was to be diagnosed it wouldn’t have been in 1979!  Believe it or not, NOW is the time to be diagnosed and treated. NOW is the time to have hope that there will be a cure soon.  I think that part of the angst that is displayed by these folks is their generation.  YES, diabetes will change your life but how you respond and use that change is entirely up to you.  One of the things that I did to control this change in course was to focus my nursing on Diabetes and patient education in my professional life.  I knew I could relate to both a newly diagnosed patient as well as the long term PWD. I kept myself educated and informed so I could pass along this knowledge.

You may not be a medical professional or even associated with the healthcare field.  That’s OK. Be loud and proud about your diabetes.  Be thankful that you are alive in 2017.  That you have cutting edge technology in your test kit.  Ifyou are so wired up, you have space age technology feeding you life sustaining medication by the DROP and the other device is constantly monitoring your blood sugar.  In 1979, a newly diagnosed PWD was sent home with a mini chemistry set:

Clinitest Urine Test Kit

10 drops of urine into the tube. Wait for the chemical reaction and the urine will turn a color that you compared on the chart.  The range of results was 0 – 1200mg/dl – sort of. To get the most “accurate” result, ideally, you should urinate to empty your bladder and then in 30 minutes go again to get a “fresh” sample. First, you are measuring urine. Urine is not fresh. It has been in your bladder for a bit. Secondly, it didn’t really tell you what was happening right now and it didn’t really correlate to the numbers. Oh, did I mention that the chemical reaction produced created a HOT bottom to the test tube.  I promise you would only touch it once.

Imagine making plans to go out with friends for dinner.  You have to test before dinner.  This is why diabetics when to the rest room in the 70’s! Oh and you had to bring your own cup to piss in.  It was just easier to set up shop on the counter in the rest room.

Be thankful for the breakthroughs in science that have superior treatments for the ravishing complications that come with diabetes.  We can still go blind but not at the rate we used to.  We still have amputations but wound care has improved and saving the limb is a lot more realistic these days.  We still have kidney failure but modern pharmacology is able to slow its progression. There are still complications that have not received the attention of the others but that is because Diabetes is still very much a mystery. But everyday researchers are learning more and more.

Having a chronic illness can bring about depression, especially diabetes. Below is the Patient Health Questionnaire developed by Pfizer Pharmaceuticals and is used in clinical practices all over the world to asses a patient’s potential for experiencing depression.  If you beleive youmay be depressed please print this page, answer the questions and take it to your health care provider:

PHQ-4

Interestingly enough research has been done recently that found that living with diabetes may be stressful to an individual but not enough to cause clinical depression.  Nonetheless, the effect of this environment is still the same on our body.  Researchers have labelled this “Diabetes Distress” and have developed a screening form for patients to use, similar to the PHQ above, but specific to diabetes and the care it requires.

You can find the Diabetes Distress screening tool here.  (This is a PDF file that will open in a new window.)

With all that being said my friends, I wish you all prosperity, and as good health as you can manage to achieve!  Take a new look at your diagnosis as well as your situation and try to find the good things that have occurred because of the dark clouds.  (Even dark clouds mean sunny skies are on their way!)

If you have gotten this far please subscribe to my blog.  If what I have said resonates with you, good or bad, please leave a comment below.

 

Peace+

DiabetesDude

World Diabetes Day 2017

From NaturalBlaze.com

In case you didn’t know it, November 14th is designated by the United Nations as World Diabetes Awareness Day.  In the United States the American Diabetes Association designates November as Diabetes Awareness as well. Their Mission is to “prevent and cure diabetes and to improve the lives of all people affected by diabetes.”  All day I have been thinking about this.  The more I thought about it, the angrier I got.  I would like to believe in my heart of hearts that awareness campaigns are as successful as the promoters would like us to believe.

The American Diabetes Association, The Juvenile Diabetes Research Fund and the International Diabetes Federation are huge organizations who are doing great things in respect to furthering the much needed research to understand this most complex of disorders with an ultimate goal of learning how to prevent the onset AND how to reverse the malfunctioning organ that has all of us in chains to its whims. This condition has reached pandemic proportions. Pandemic means widespread over a country or the world. And here we sit in the pews, in our choir robes while the evangelists from the churches of ADA/JDRF and IDF stand at the pulpit and preach for the need to make the world aware of this terrible demon that is afflicting 1.5 million newly diagnosed Americans a year, as of 2015 according to the ADA. In 2017 the Center for Disease Control published that there are over 100 million Americans with some type of diabetes.  We are a tremendous choir so much so that even the Mormon Tabernacle Choir would shudder at our numbers. The problem is these very same evangelists are not out there in tent revival style homecomings preaching the word of awareness to the unbaptized.  The preaching does not commence until that poor, wretched soul is diagnosed. And then the first sermon they receive is that of the diligent, tireless researchers who are on the cusp of a cure right now. In ten years time this demon will be exorcised never to darken another metabolism.  I have had diabetes sine 1979.  When 1989 rolled around I was chomping at the bit to get in line to be blessed by the healers that had harnessed the ability to make me whole once again!

For the last 2 weeks, as I watch television or listen to the radio I am confounded by the number of advertisements for breast cancer awareness* campaigns. And then I sit there and get angry.  I understand that advertising takes money. Money that could be used to further research, but the big three proselytizers have budgets that have line items for research AND marketing.  If you want to increase the awareness of the need for people to recognize the symptoms of pre-diabetes and to give credence to the devastating effects of “having a little sugar” there needs to be a more public, in your face, exposure like breast cancer awareness. Especially in the month of NOVEMBER, for God’s sake!  There is a cartoon circulating on social media with Santa Claus and Tom Turkey having a conversation and Ole’ Tom is letting St. Nick have it because no sooner than Halloween turned in to All Saint’s Day the stores had already deployed their Christmas decorations and wares.

Cartoon: December, Fat Boy! This month is for MY Holiday! Now hop on that sleigh and WAIT your TURN!

Look at the image in the header of this post. Can you name all the awareness conditions that each ribbon represents?  Even within the diabetes community we can’t agree on whether it should be Red (ADA) or Wedgewood Blue (IDF)/(JDRF). The Rainbow of Ribbons has gotten out of hand.  I am not saying we shouldn’t support the causes that matter to us or have impacted our lives but now we need an app on our phone that when you point the camera at a ribbon it will identify all the causes associated with that color.  After that you will be on your own as to how to narrow it down or perhaps, like reporting roadwork or radar on Waze, you could report a sighting in the wild after confronting the awareness advocate and have identified and classified that particular ribbon’s species and family.

jdrf-t1dfootprint

You may have seen these appearing in your social media feeds or perhaps you have one yourself.  This is the official badge of the Choir of Sweet Melodies. Some may look a little different.\, but the identity of the enrobed is the same: we all have a condition called diabetes.  And as the evangelists spread the good word the members of the congregation, dressed in their robes, eagerly and swiftly, post their new #T1DLooksLikeMe profile images, IGram stories and FBook posts for all their friends/family/followers to see.  I will concede, that in this modern world of anonymous and random “friends”, these posts may be enlightening to these “strange” friends. I am not really sure that the impact will be as expected. But, like it is said “If one person is reached then I have done my job.”  Hmmmm. 1:1,500,000, I should go get a MegaMillions lottery ticket. The jackpot this week is $82,000,000.00. Even 1% would buy some serious advertising.

So how do the members of choir go forth with the message and expose the heathens with healthy pancreases or perhaps failing pancreases to the importance of what is still not being publicly recognized as a serious, life altering and at time life threatening condition?  We need to stop talking just within our social circle.  Our friends and families know we have diabetes.  If they don’t, well they should and this is the time to sit them down and give them the basics.  People need to know what we encounter on a daily basis. In my 35+ years I have never shied away from testing or taking insulin in public. As a teen, if I went to the bathroom to inject it was because I needed to politely get access to a site and not because it was wrong to inject at the table.  Doing these things in plain sight are conversation starters.  I have had multiple occasions when strangers have seen me testing or giving insulin and have approached me and started a conversation. Secondly, acquire some type of medical alert jewelry.  It may save your life one day and it may also be an invitation to start a conversation.  It doesn’t have to be anything fancy or expensive. It just has to be…on your wrist, your shoe, or around your neck.

Bottom line folks, we need to pour out of the Chapel of the Unquenchable Thirst and start knocking on doors and introducing ourselves:

“Hello, I am Elder DiabetesDude. Have you heard the news? Diabetes is on the rise and we want to make sure that you are saved from this horrible affliction.  I only have 7 simple questions whose answers could save your life.”

“You’ve got a few minutes? Great!

Are over 40? Do you have any relatives afflicted with the demon called diabetes? Do you have high blood pressure? (If your neighbor is a woman – were you ever diagnosed with gestational diabetes?) Are you physically active? I only have one more question, brother/sister. You don’t have to tell me but would you please point to your weight category?

“Awesome. I am going to leave this assessment with you. Based on our score, as determined by the American Diabetes Association, you should discuss the results with your primary healthcare provider.”

Am I mocking certain church groups? If you think I am then you are probably right. But ask yourself this “Why do I know who DiabetesDude is mocking?” I’ll tell you. Because these folks get out there and make a presence in PUBLIC. We may not appreciate their tactics but I tell you this I sure as heck respect their dedication to spreading the word – whatever that may be.

Lastly, please don’t flame me because I appeared to downplay the seriousness of breast cancer.  That is not the case at all. I support breast cancer research as well as support for those who have been impacted by this equally devastating disease.

Peace+

DiabetesDude

 

 

 

A Day that will live on in Infamy…

Well perhaps not infamy, but it will be a milestone in my journey with diabetes.  As promised in the last post this post will be about my visit with the endocrinologist after being completely dumbfounded and discouraged by my primary care provider.

I couldn’t see the new doctor until a month later so it was up to me to do the best I could with what I had.  The PCP wanted me to stop ALL carbohydrate intake, if I wasn’t going to stop all food except on weekends.  After I left the PCP I went to breakfast at Bob Evans.  They have very good omelets.  They also have scrumptious banana bread!  I don’t do things half-assed. As much as I really wanted the banana bread I stuck to my guns.  3 egg omelet with diced ham and cheddar cheese. There. No carbohydrates.  Of course now I had a different conundrum.  No carbohydrates meant no variable to adjust insulin dosage.  Where’s your logic now PCP?????After a little thought I figured it out.  Breakfast arrived.  It wasn’t as much as I usually got but it was enough and it was quite tasty.

The next 30 days were challenging.  There were days that were just as they should have been.  However, there were more days with 200-300 fastings, correction doses to get it under 150 only to repeat the rollercoaster again when I woke up.  It was clear that my body was pumping out its own glucose!  AS I had been told by the PCP that I was taking dangerous amounts of insulin, I had started to reduce the basal amount by 10% every three days.  I had been taking 100units at bed and had worked it down to 88units of Lantus (glargine i-100).

Not only was I feeling like crap because my blood sugar was consistently elevated with intermittent ketosis, but the hyperglycemia was impacting my productivity at work.  I couldn’t concentrate, my vision, already impacted by diabetes, was blurry – I stare at 3 monitors for 8 hours plus a small print reference manual.  Not to mention frequent trips to the bathroom.

Finally the appointment day had arrived.  The last time I had been in this office I had been talked down to by the Nurse Practitioner, questioned if I was really a Type 1 and because she would not help me put my socks back on – refused to look at my feet which she had asked to see.  She told me next time not to wear socks so she could look at them.  So to say I was a little anxious would be a safe bet.

I was called back and the usual things occured – height, weight (315lbs), medication lists, a finger stick for an A1C in the office and a download of my meter readings.  Next step – see the endo.  It was like waiting for the Great Oz to appear from behind the curtain.  A knock upon the door and it was show time…do or die.

Introductions were made.  Then straight on to the heart of the matter. “Why are you here today?”  I replied, “Because my PCP says I am taking too much insulin and I should eliminate all carbohydrates from my diet.”  The obvious next question was “How much insulin are you taking?”  “I am taking 48units Novolog before meals and 88units Lantus before bed.”  He then proceeded to review the numbers from my meter.  He was making notes on the paper, he pulled out his phone and punched numbers into the calculator. Then he stopped and looked at me. “Well, the problem is you are not taking enough insulin.  You should be taking as much basal insulin as your combined bolus doses. But first we need to get your basal amount increased.”  Again the calculator was employed, more notes written.  “OK. Let’s start here and go up every three days until your fasting is under 180.  As far as the carbohydrates, you need carbohydrates in your diet.  You can reduce them but do not eliminate them. Any questions?” “Yes. What is my A1C?” “8.3%.”

With that I left the office with a renewed confidence in managing my diabetes. I had finally found a provider who bought into the team approach, listened to what I had to say and what my goals were and together we develop a dynamic plan.  I also had new prescriptions for “massive amounts” of insulin to take to the pharmacy.

So what is the take away from this post?  You need to find a provider who is going to work with you without dictating your care.  We are the ones who must “suffer” this condition and unfortunately there is not a one size fits all for treating and managing this condition.  Lastly, the new endocrinologist confirmed that I most certainly was a Type 1 AND I was markedly insulin resistant.

****Update****

Went back for my second follow up.  I am currently taking 35units U-200 bolus and 87units U-300 basal.  I have been on Invokana (canagliflozin) off label for 3 months.  Drum roll……….. my A1C—-> 6.4%.  In my 38 years of being diabetic I have rarely seen it at 7% let alone under 7%.  Maybe this day will live on in infamy, for me at least!

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Until the next time, when I will discuss and review some technology tools out there for us sugar testers.  Remember, be good and if you can’t be good at least be as good as you can.

Peace+  Tim the DiabetesDude

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Here is a book that you may find useful in your quest to make sense of this rollercoaster ride. I have no relationship with the author or the publisher other than receiving a commission through AMazon if you like it enough to buy it.

Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin–Completely Revised and Updated