How Much Patience Must A Patient Have?

This is not a tongue-twister.  It is a temporal lobe twister. 

Recently, I entered an endocrinological perfect storm. The experience left me wondering whether it is time for me to raise my medical expectations. 

When I moved to Florida from California, I had to find a new endocrinologist to manage my diabetes and thyroid issues.  I looked for a doctor close to my new home but found only one.  The online reviews for this doctor were not stellar, to say the least.  In fact, he sounded downright mean… or, at least, curt.  For reasons I am not going to bother to explain here, I have a hard time going to see doctors in the best of circumstances. I was certainly not anxious to see the endocrinologist whose reviews made him sound like the medical version of Simon Legree.  I widened my search and ended up selecting a doctor in Orlando, which is about 40 miles from where I live.  I know that is a bit far to travel but the doctor’s name was Dr. Steady (not his real name, but a synonym of it).  For anyone who has diabetes, the quest to keep blood sugar levels stable is the holy grail.  How could I not select someone called Dr. Steady?  

Dr. Steady also had excellent reviews.  My visits to the office for the past five years have been efficient, relatively painless experiences. Dr. Steady always concluded a visit by telling me I was too healthy to be there.  I only go a few times a year, so the commute was not that big a deal. In fact, it was kind of pleasant taking a trip to the “big city” every few months.  I felt very sophisticated and precious.  

Fast forward to a few weeks ago.  I realized I was running out of my blood sugar stabilization medication.  Now, in my world, I would always have at least 30 days’ worth of drugs on hand so as not to worry about running short.  However, insurance companies tend not to think that way.  They only let me get a new supply when I am down to 10 days or less of the old prescription.  I think they figure I could die in the interim and they would have wasted the money paying for medication that I would never take.  Still, 10 days really should be long enough to get a prescription refilled. 

I called the pharmacy to order the refill and they indicated they would need to contact the doctor to get an authorization for the prescription renewal.  I had an appointment scheduled, but not until a few weeks after I would run out of pills.  I waited two days, then called the pharmacy.  They told me that they had not heard from the doctor’s office.  I called the doctor’s office, who told me that they had submitted the authorization.  They said they would send it again.  The next morning, I called the pharmacy again and they said that they had not heard from the doctor’s office but would resubmit the request.  The next day, I called the pharmacy again.  Again, they told me they had not heard from the doctor’s office.  I called the doctor’s office.  At that point, I was completely out of medication.  The doctor’s office swore to me that they were submitting the authorization while I was on the phone.  

Apparently, the problem stemmed from the fact that the doctor’s electronic prescription service only works within Orlando.  Since I was needing the prescription authorized in my town, which is apparently in an international zip code as far as the doctor’s office is concerned, the electronic system did not work.  Never mind that the doctor’s office has been handling my prescriptions for over five years.  For some reason, despite my numerous, increasingly more desperate pleas for drugs, someone just kept pushing the computer button.  What is the definition of insanity?  Doing the same thing over and over again and expecting different results?  I do not like to cast aspersions, but I think an insane person must have been trying to authorize my prescription.  

Six days into this process of medical musical chairs, I completely ran out of medication.  I was going cold turkey.  Although my blood sugar levels were certainly higher than they normally are, I was able to keep them reasonable by exercise and consuming only about 1100 calories a day.  This was not a mood-enhancing system, I assure you.  I also felt like crap all the time.  I felt exhausted, headache-y, and weak.  I had this strange sensation that there were two incredible forces pushing from both within and outside my body, in conflict with one another.  I felt like I was going to spontaneously crumble, as if hit by The Invisible Ray (for those of you who have not seen this old Karloff/Lugosi movie, you might want to check it out.) I am surprised I remained conscious.  The only hopeful sign was that I was able to keep my blood sugar level beneath a dangerous range.  As the days crept by, one broken promise after another, I did almost surrender.  It really seemed a lot easier to die than to continue the fight for Janumet. 

At one point a couple of years ago, Dr. Steady suggested the possibility that I might be able to go off the medication because I was doing so well.  I was excited because Janumet is expensive.  When he made no mention of going off the medication at my next visit, I asked him about it. He explained that he had thought better of the idea because I was doing so well on it.  He said that, if I went off the medication and my blood sugar got out of whack, it would be much harder to get it back in whack.  At the time, I was disappointed.  Now, I see the wisdom of that decision.  I think we have all learned now that going off the medication is not a good option for me. 

Finally, on Monday (ten days after I originally called in the prescription) afternoon, I confirmed with the pharmacy that they received the authorization.  They told me they would fill it the next day.  On Tuesday, I called and found out that the pharmacy had none of the drug I needed, so they had to order it.  I could expect the prescription to be ready around eleven on Wednesday. 

On Wednesday morning, my blood sugar elevated into the danger zone.  I was able to work it down with exercise and famine, but it was concerning.  I did not hear from the pharmacy on Wednesday, so I went in to see them at around 3.  At that point, my next stop was going to be the emergency room.  I was back in the “safe” zone on the blood sugar, but I still felt horrible and I was no longer able to keep hope alive.

You guessed it. The drug did not arrive in the pharmacy’s order.  The pharmacy tech, to her credit, knew desperation when she saw it.  She got on the phone and found me a 30-day supply at another pharmacy about 15 miles down the road.  I got back in the car and headed to the other pharmacy, fully expecting there to be yet another problem.  Happily, they did sell me my drugs and I downed one immediately.  I am still re-whacking my blood sugar levels several days later, but all evidence seems to point to recovery with no lasting consequences.

No lasting consequences to me, that is.  For the endocrinologist, not so much.  You remember that local endocrinologist that sounded mean in his reviews?  It turns out that a friend of mine has been seeing him for several months and really likes him.  I decided to fire the Orlando doctor and risk possible curtness.

I called his office to make an appointment yesterday.  The office is closed all week.  Heavy sigh.  I am in the medical twilight zone. 

Just to quell any alarm this blog may generate, please know that I wrote in a few weeks ago.  I am now safely back on my drugs and managing my blood sugar well. 

As we age, health concerns seem to loom much larger than they did in our younger years.  What tips and tricks do you employ to keep as healthy as possible in your “more than ready for prime time” years?  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com

Have a healthy day!

Terri/Dorry

Food For Thought

When I was diagnosed with diabetes in 2001, I made drastic changes to my eating habits.  I vigilantly read labels and minimized the number of carbohydrate grams I allowed to pass my lips.  It was an exhausting process.  In the beginning, it felt like everything was off limits and I was always hungry.  I have memories of bursting into tears in the freezer aisle of the grocery store when I learned that sugar-free fudge pops did, in fact, contain a few grams of carbohydrates.  It seemed like the last straw, if I couldn’t even eat sugar-free food.  I soon learned how to balance what I ate and work within a reasonable diet.  It still wasn’t easy, but I found I could manage my disease to prevent long-term damage without starving to death.  Between diet, exercise, and oral medication, I stabilized my blood sugar levels and lost about 70 pounds over about a year and a half.

After losing this weight, I was not able to roust my still-overweight body off that plateau. It was discouraging.  Also, life happened.  I got a new job.  The time I spent working and commuting every day increased significantly.  Since time is a finite quantity, I had to find the extra time I needed for the job somewhere.  I basically supplemented my job-related time by decreasing my sleeping time.  Somehow, sleep seemed discretionary to my addled brain.  The stress in my life increased.  I found myself eating too much of the wrong foods and exercising less and less.  I still did a pretty good job of controlling my blood sugar levels, but regained about half the weight I lost.

When I was working, meals were catch-as-catch-can affairs.  I rarely had time to stop and breathe and think, much less eat properly.  Typically, I would just push and push over the course of a day, going from one task to another conference call to someone waiting to talk to me until I was about to drop.  When people with diabetes don’t eat or eat foods that contain lots of carbohydrates and minimal protein, blood sugar levels make their displeasure known.  My blood sugar often protested my neglect by plummeting.  There is a physical sensation when this happens.  It feels a lot like panic. One feels a compulsion to eat everything and anything in sight to keep from losing consciousness.  I am not sure if I actually would have fainted in those moments, but my body certainly felt as if I would.  When this happened, I would stuff any food available into my mouth until I could feel the sugar coursing through my veins, which dissipated the panic.

When I retired, I did want to improve my health-related habits.  I did begin exercising more and more.  I ate better, partly because I just had more time and access to better food.  When I am home, it is easier to go to the refrigerator and fix myself a healthy, appealing meal.  Also, I found I wasn’t craving garbage food as much. Maybe the correlation between the need for comfort and for food decreased.  When you are working like a madwoman and can feel the unpleasant sensation of adrenaline forcing itself through your body on its way to exploding out of your brain on a regular basis, it kind of makes sense to grab the quickest, easiest, most immediate distraction you can.  Donuts and French fries might be bad long-term choices, but they are pretty effective immediate distractions.  Once I slowed the pace of my life, I needed that distraction less.  I also had more intervention time to remind myself that whatever food I was tempted to eat rarely tasted as good as I thought it would.  At any rate, between the increased exercise and the better food choices, I lost almost all the weight I regained.

It is nice that I’ve lost this weight.  I feel great.  On the other hand, I’m back to the point where I originally started going off track.  I’ve plateaued and am getting discouraged.  I do believe that most of my progress since I retired has been due to the increased exercise.   I have the sneaky feeling that, to lose any more weight and continue to keep my blood sugar levels under control, I’m going to have to take more drastic dietary measures than just slightly decreasing my consumption of high-fat and high-carbohydrate foods.

It is a struggle because I don’t want to feel deprived.  I remember the feeling of deprivation I used to have when I first diagnosed. The feeling resembled despair.  I felt hollow and foggy most of the time.  I could put up with it, as long as I was seeing tangible results.  As long as I lost weight, I could keep plugging along.  Once I hit the point where the sacrifice resulted in nothing more than the status quo, I couldn’t seem to continue. It is also difficult because I eat like a four-year-old.  I’ve always been an incredibly picky eater.  Chances are, if a four-year-old won’t eat it, neither will I.  That kind of limits my options as to what I will eat.  Chicken fingers, french fries, spaghetti and meatballs, and ice cream typically don’t constitute a healthy diet.

I suspect that part of my problem is that I have some pretty odd beliefs about food.  I know that I have to challenge these beliefs in order to feel satisfied with a healthier diet.    Here are some of the weird beliefs that lurk in my brain:

  • I believe that when I have an opportunity to eat something yummy, I should eat it because I may never get the chance again. Never mind that there is a McDonald’s on every street corner and french fries practically grow on trees.
  • I believe the term “ambrosia salad” is an oxymoron. Ambrosia was the food of the gods.  I just can’t conceive that the gods were eating any kind of salad. Ice cream sundaes, maybe, but not salads.   I mean, salads are fine, but they don’t have the panache necessary to nourish the gods.  Or me, for that matter.
  • I believe that anything I eat at Disney World doesn’t count. Two words.  Pixie dust.  Need I say more?
  • I believe bread is a health food. A mental health food.  I firmly believe that, if I go long enough without bread, I will suffer a psychotic break.
  • I believe peanut butter is an entrée. Oddly enough, my endocrinologist is fine with me consuming peanut butter for dinner. Apparently, organic peanut butter is an excellent source of protein. The problem is that, because it has fairly high fat content, it isn’t a good idea to eat three ounces of it, the way one would eat three ounces of chicken or fish or beef.
  • I believe I must eat gingerbread on at least four separate occasions in November and December or Christmas will not come.

I know that these notions may seem comical. Some part of my brain actually does believe them, however.  More importantly, I think that portion of my brain likes believing them and doesn’t want to give them up.  I’m ashamed to admit it, but I’m not sure I want food that is completely devoid of whimsy, fun, and sensuality.

People tell me that it is possible to retain some element of joyfulness in one’s diet while still eating sensibly and losing weight.  I’m not sure if I believe that or not.  Yes, at times in my journey, I have managed to find some semblance of balance.  On the other hand, I always seem to end up back where I am now- overweight and plateaued.  It probably isn’t realistic to think that I am ever going to be the poster child for healthy eating.  And maybe that is okay.  Maybe the goal should just be incremental improvement or even just maintaining the status quo, which is actually not too bad.

Maybe the problem isn’t all those comical food-related notions I have.  Maybe the problem is the other belief I hide in the dingiest corner of my brain.  I believe that my eating habits and weight are shameful.  I know that positive messages (like “bread is a health food”) are more likely to motivate action than negative ones (like “you should be ashamed of yourself for eating that”).  Perhaps, if I could just find a way to be kind to myself about myself all the time, I could banish that negative message that I work so hard to shove into a corner.  If I could just create more positive messages that reinforce the changes I want to make instead of reinforcing the not-so-healthy habits I already have, I might have better luck.

What do you think?  Why do so many of us have such complicated relationships with food?  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com. 

Have a healthy day!

Terri 🙂