POTS

     My guess is you have never heard of POTS.  No, I'm not talking about the herb you put in brownies or smoke.  The POTS I'm referring to makes you feel lousy.  I had never heard of it until my beautiful, young daughter-in-law, Paige, was diagnosed with it almost three years ago.  It rocked her world!   And, the worlds of those of us who love her.

  So what is this malady?  POTS is the acronym for postural orthostatic tachycardia syndrome.   It is hard to diagnose or manage.  In the U.S. alone, it is estimated to affect more than 500,000 people and millions world-wide. POTS can strike any age, gender or race, but it is most often seen in women between the ages of 15 and 50. Men and boys can develop it as well, but approximately 80% of patients are female.  Technically speaking, it falls under the broad category of a dysautonomia autonomic disorder. It is believed to be caused by many phenomena, including pregnancy, trauma, and can be genetic. There are many confusing facets of this autonomic disorder which are way over my head.   My watered down interpretation is that having an autonomic disorder means your brain and your heart are not communicating effectively.  This makes me visualize the scene in the movie, "The Jerk." Steve Martin's character tried to clap his hands together but he could never make contact. 

     There is no known cure for POTS.  Sometimes symptoms can diminish with age. Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities can be significantly limited.  Statistics show that approximately 25% of POTS patients are disabled and unable to work. Fortunately, Paige is not in that group, but much to her chagrin, she does miss work a few days per month due to POTS.   Here's the rub:  most people who suffer from it look normal and healthy.  That is why it is so hard to diagnose and is often misdiagnosed.

     Here are some of the symptoms of POTS:  headache; fatigue; sleep disorder; weakness; hyperventilation; low grade fever, tremors; sweating; anxiety/palpitation; dizziness/vertigo; and pre‐syncope/syncope (fainting).  Paige's experiences with POTS included every one of these symptoms.  

      In a way, she was lucky.  When it became overwhelming, she did not have to wait years to find out what the heck was going on or be told in the meantime it was all psychosomatic. After a major episode of hyperventilating and nearly fainting at work one day, she was sent to the emergency room and ultimately hospitalized.  Her family already had a connection with a local cardiologist, Dr. Farhat Khairallah, who specialized in dysautonomia because her father, after fainting while driving,  had been diagnosed earlier with a similar form.  Dr. Khairallah was immediately called in.  He put her through many tests, including a tilt test.  This is a test many doctors would not even consider.  During this test, blood pressure and heart rate are measured.  The patient starts out horizontal on a table and is slowly raised to a 70% vertical position.  One of the criteria for a POTS diagnosis is a heart rate increase of 30 beats per minute (bpm) or more, or over 120  bpm, within the first 10 minutes of standing.  Paige's heart rate fluctuations were right in line.  She realized after her diagnosis and learning more about this syndrome, she had been feeling symptoms for years, dating back to her teens, but it had worsened over time. 

     She explained, " My doctor believes I have been experiencing POTS symptoms since my teens.  As a teen, I started having dizziness and fatigue anytime I would get up from a sitting position,  I thought everyone experienced this so I was not concerned.  My heart began racing so much in college I had a series of tests done, including wearing a heart monitor.  I've always had trouble keeping my hands and feet warm.  I even had chilblains (blistering caused by inflammation of small blood vessels) removed from my toes when I lived in Colorado in the 1990s. I was diagnosed as having Meniere's disease in my ears about 2006.   In 2009, I had painful vasospasms when I was nursing our youngest.  Consequently, I had to stop nursing him after six months.   I had a low grade fever and felt awful for almost a year before my episode at work."

      So what happened after Paige was diagnosed?   Dehydration is known to be a big problem with many heart and autonomic malfunctions so one of the recommendations to counteract the symptoms were to a drink at least 90 ounces of water every day.  Dietary restrictions, strangely enough, included increasing salt intake.  Some researchers suggest increasing vitamin B-12 if blood tests show there is a deficiency because it improves the nervous system.  She was never told that was her problem.  Dr. Khairallah put her on Fludrocortisone to increase her salt retention, Midodrine which causes vasoconstriction, increases blood pressure which allows more blood to return to the upper parts of the body.  He also gave her Adderall to increase vasoconstriction and blood pressure.  In addition, Paige followed up with a doctor 200 miles away who specialized in POTS and, by the way, could relate on a personal level because he had POTS. She was advised to avoid caffeine (except when she needed an energy jolt to function) and alcohol. She was cautioned not to lean over or stand up too quickly because the blood would have a tendency to pool in her extremities and cause the dizziness.  The most consistent research indicates a regular exercise program is the one thing that has the most positive effect on managing POTS. Paige was encouraged to keep her strength by exercising, i.e. walking or riding a stationary recumbent bike.  Another suggestion was to maintain a realistic schedule, otherwise be prepared to suffer from fatigue when she overbooked herself.  

     The water consumption was not a problem.  Paige incorporated an increase in the number of ounces she drank immediately.  Increasing salt was easy.   However, as a working mother of three, who experienced fatigue, dizziness, anxiety, and occasional low grade fever, trying to follow any consistent exercise routine or avoiding a hectic schedule has been nearly impossible.  Although her symptoms are still sporadic, i.e. she has good days/weeks and not so good days/weeks, Paige manages to push through much of the time. 

     Her goal from the onset has been to try to maintain as much normalcy for herself and her family as possible.  Sometimes she feels really good and is full of vim and vigor.  She did cart wheels with her nine year old daughter at Thanksgiving for heaven's sake!!!  Alas, the following week she could barely make it through a day of work much less deal with children, homework, soccer practice, etc.     She dropped the medication after several months because they did not seem to help.  Currently, her approach to managing POTS is acupuncture, taking a daily multi-vitamin and salt tablet, with an occasional B-12 vitamin.  She plans to incorporate a stationary recumbent bike regimen in 2015. 

     I am often amazed at how much she is able to do under the circumstances.  The good news is that she has a supportive husband, family and friends who kick in when she is going through a rough patch.  Not everyone who has POTS has a support group.  For those that don't, there are lots of support groups available, online and otherwise.  If you are interested in learning more or getting help for yourself or a loved one, check out these websites:  http://www.dysautonomiainternational.org; http://potsplace.com; http://dysautomia-support.meetup.com.  

   
 

Anyone Needled You Lately?

      Do your children ever needle you?  Well, to be honest, my son Craig needles me on a regular basis.  Don't get me wrong, I know his intentions are good. You see, he is an acupuncturist.  In his youth, he was quite good in all kinds of sports so I thought he would probably pursue a career in  athletics like coaching or something similar.  Little did I know, his life focus as an adult would become helping people get well, stay healthy, and active as long as possible by integrating traditional Chinese medicine with Western philosophies.

      Truth be known, I was supportive but a bit skeptical when he first decided to venture into the realm of  Chinese medicine by enrolling at the Atlantic University of Traditional Chinese Medicine in Asheville, NC. However, he was already a certified massage therapist so I guess it was only natural for him to pursue additional training in finding ways to direct the body's natural blood flow and energy (Qi) to achieve optimal results.  In Eastern medicine this is done through acupuncture, herbal remedies, and positive lifestyle changes.

     Okay, I'll admit it.  I was good with the massages he was already doing for me (who wouldn't be?).  I was fine with herbal remedies.  Heck, I had been drinking herb tea for years.  Positive lifestyle changes, i.e. healthy diet, exercise---you got it! BUT, I was scared of the needle thing. Yes they're tiny little things but...


Yes, this is Craig placing
the itty bitty needles in my knee.

      One day I had a stinking sinus headache.  I mentioned it to Craig and he offered acupuncture as a better alternative to all the over the counter remedies.  I bucked up, let him treat me, and 45 minutes later my headache was completely gone.   After the initial small pricks, I didn't even feel the needles while I was relaxing on the table.  Amazing! 

     That was over seven years ago when he first established his Tallahassee Chinese Medicine practice. He made a believer out of me.  The skeptic in me shut up.  Since then I have received acupuncture and herbal treatments several times per year for other ailments including insomnia, plantar fasciitis, colds, arthritis in my knees, and other leg pain.

  Craig expanded this year.  Another acupuncturist, Rachel Kelley, has joined his clinic.  In addition, he includes a "community acupuncture" concept as a part of his services.  This concept allows the patient to make the choice of receiving private or the same individualized treatment in a group environment for a reduced amount.  The patients actually determine what they will pay on a sliding scale.  This provides an affordable option for people to receive acupuncture treatment.  Quite innovative, don't you think?

     As for me, Craig can keep on needling me.  I believe we'll both benefit in the long run.

    

    

Tell Your children...

       Back in the 1960s, a group named "The Animals" did a song entitled "House of the Rising Sun."   Other groups have done it since but their version was very popular for a number of years.  A line from the song has been on my mind a lot lately.  It goes, "Oh mother, tell your children not to do what I have done."     

        I have been a sun "worshiper" for most of my life.  I used to lather on baby oil and lay out in the sun on a lounge chair for hours just so I could get a premier tan.  When in my twenties I first became interested in writing, I can vividly remember setting my typewriter (this was before computers) up on a table on my patio.  I put on my swim suit, wrote to my heart's content, and absorbed the sun.  Now, I garden, do yard chores, and walk for exercise so I am still out in the sun almost daily.  I started using sunscreen a couple of decades ago even though I really didn't like how it made my skin feel and the way beach sand stuck to it.

       About a year or so ago, I developed a small spot on the crease of my nose.  No big deal...treat with peroxide, antibiotic ointment...you know the drill.  It seemed to crust over, get better and, just when I thought it was gone, it would come back - bleed, scab, crust - over and over again.  During my annual checkup last December, my doctor thought it was basil cell cancer and did a biopsy.  According to the nurse who called me, the biopsy came back negative but there were atypical cells. She said the recommendation was to either use Efudex, a prescription cream that targets precancerous lesions,  or go to a dermatologist.  I figured using Efudex for a couple of weeks was easier so I chose that path.  Besides, Ron had done Efudex multiple times in the last several years and it seemed to work.

       A few weeks later, the lesion came back, and the same pattern of crusting, scabbing, and bleeding resumed.  By late Spring, I was tired of dealing with it  and a bit perplexed.  It also didn't look too cool and makeup didn't cover it.  Finally,  I called my doctor's office and asked them to send me a copy of the December biopsy report.  I guess I should have done this initially because when I got the report, I discovered the recommendation on the report was to have additional biopsies to examine deeper levels.  Either I went brain dead when she said the word "negative" or the nurse never told me the report said this when she called with the results back in January.  At any rate, I became proactive at this point and set up an appointment with a dermatologist.

       Another biopsy was done and it came back positive basal cell carcinoma.  Fortunately, if you have to have skin cancer, this is a "good kind" because it is slow growing, usually not as wide spread, and does not cause as much tissue damage. The dermatologist recommended MOHS Micrographic Surgery which is suppose to provide the highest cure rate (up to 99%) for basal and squamous cell carcinomas.  The goal is to only remove as much tissue as is absolutely necessary.  This is accomplished by first removing tissue at the biopsy and peripheral areas.  The surgeon sends it to the lab where it each section is microscopically examined for evidence of remaining cancer.  This step takes about 30 minutes.  In the meantime, you hang out and wait.   If there is more cancer, the surgeon takes another slice and the same procedure occurs. Potentially, these steps can be repeated several times and it can take all day.

Day After Surgery


        For me, it only took one cut to get rid of those nasty cells.  Yahoo!  Next a plastic surgeon closed it up by pulling some skin from above the area over the hole.  Ron had me back home in about two hours.  Although, they gave me pain pills, I only ended up taking a few Extra Strength Tylenol in the first 24 hours.  The healing process has been relatively quick.  The body has the amazing ability to send the troops to a wound and immediately go about the task of repairing.

One Week After Surgery

      
       After the whole thing was over, the dermatologist completely checked me over for any other suspicious areas.  There were none.  The last thing he said to me as he left the room was, "This was probably from sun damage twenty-five years ago.  Wear sunscreen."

        Like the song says, "Tell your children..."  They probably won't heed the warning but tell them anyway.






    

Making Memories

       Even though we traveled a lot this summer, we were still able to spend some time with our three grandchildren, Cole, 11, Anna Jewell, 9, and Nathan, 5 years old, hopefully making some happy memories.  Memory...now that's a fascinating and perplexing topic.  What, if anything, will the children remember about this summer 5, 10, 20 or 30 years from now?

       Each summer, when we are in town, we do "Philly and Ronnie Camp" a couple of days a week.  It gives us a chance to spend time with the kids and it gives their mommy, Paige, a break.  This year we had them the entire last week before school because Paige had to go back to work earlier then normal for teacher planning.   For their last summer hurrah, we decided to rent a beach house. In addition to the children, we took our two dogs, Molly and Annie. We spent time on the beach, paddled a paddle boat, played games one rainy morning, walked/chased the dogs, and basically hung out.  It was a lot of fun and we had the opportunity to enjoy many special moments with each child. 

       Now don't get me wrong, every minute was not a Hallmark moment.  In reality, it often resembled a mixture of episodes from the Little Rascals, Dennis the Menace, iCarly, and the Ninja Turtles with a few rounds of World-wide Wrestling thrown in.  They really loved the loft feature of the house. After all, it provided great sport.  One or two of them would sneak upstairs when no one was paying attention and throw pillows and other objects over the loft wall to see who they could hit.  We soon put a stop (at least when we were looking) to this game to avoid injury to people and property.   They took our authority in stride and moved on to something else...body slamming one another.  As you might imagine, this activity could never turn out well, especially with their difference in height and weight.  Another attraction at the house was the outdoor shower.  It was great for washing all the beach sand off and keeping it out of the house.  Who knew that it would inspire exhibitionism with the younger two?  After showering, they ran around the lower and upper decks butt naked, laughing and squealing with me hollering "put your clothes on!  The neighbors can see you!"  These are just a few examples of what I like to refer to as "teaching" opportunities.

       But...there were other opportunities, like the lightning flashing through the glass doors in the wee hours of the morning on our first night in the house.  None one else seemed to notice it but Nathan and me.  About 4 a.m., I felt his touch and looked up to see him standing next to where I was sleeping.  He said, "Philly, it's lightning, I'm scared."  I pulled him up beside me and we cuddled the rest of the night.  He soon went back to sleep.  I never did, but I was very aware that just being able to comfort him was a blessing.

       Another time, Anna Jewell privately confided in me that she was worried about how the upcoming school year would go. She shared her specific concerns.  I felt privileged to hear them and have the chance to reassure her it would all work out.  Plus, she gave me multiple hugs and kisses after the "talk."

       Cole was  on the cusp of starting middle school, had very little use for the annoyances of his younger siblings, at least on the surface.   Yet, we watched him play endlessly in the surf with Anna Jewell and Nathan, holding hands, protecting them from the undertow.    He also was fascinated by the magic of the annual "Super Moon" when the moon is brightest and closest to earth.   He watched as it changed positions and shone brightly through the glass doors on the deck.  Although by the last night it was beginning to wane, Cole woke me to stand out on the upper deck to bask in the awesomeness with him. Yes, he did lose some sleep, but he was truly happy to experience this phenomena.

       The question is.  What will the children remember about summer 2014 in 5, 10, 20 or 30 years?  For that matter, what will Ron and I?

    

   

    




      





   

Somebody Talk Me Out of This!

     A few years ago I was introduced to the Camino de Santiago trail in Spain.  We were visiting Ron's sister, June, and her hubby, Chuck, in Raleigh, North Carolina.  It was a rainy day.  Ron and Chuck went to Bass Pro to kill time.  June and I watched the movie The Way with Martin Sheen and his son, Emilio Estevez.  This was the first time I had ever heard about this spiritual trek to visit the burial of Saint James.  It was very, very inspiring.   At the end of the movie, June and I vowed to do the trail some day.  I even printed out the 500 mile trail map and put it on my refrigerator.  After about a year, I threw the map away, thinking it was just a fantasy.  

     Recently, my inspiration has been renewed.   A local sixty year old couple is half way through the trail now.  Gregg writes a blog about their daily experience, including candid descriptions of the scenery, the people from all over the world they meet, the hostels they sleep in,  and their  aches, pains, and blisters from walking 15-20 miles per day.  They've been on the trail for about five weeks.

   A week or so ago, Ron and I went to see the documentary entitled, "Walking the Camino" at a small local theater. This film tracked six "pilgrims" from around the world who risked blisters and exhaustion to do the 500 mile hike. The ages ranged from a young woman who pushed her 3 year-old son in a stroller to a couple of 70 and 80 years young men.  A retired army officer who had completed the trek was at the theater to introduce the screening.  Once again I am encouraged to take on this humongous challenge!

Photo from Walking the Camino documentary

     So what is this trail about?  It is a Christian pilgrimage to visit the burial location of Saint James, one of Jesus' apostles. There are two stories that tell how his body got there.  One of the legends holds his remains were carried by boat from Jerusalem to northern Spain where he was buried on what is now the city of  Santiago de Compostela, Spain.  Traditionally, the Way of Saint James began at one's home and ended at the pilgrimage site with the goal to feel the spiritual influence. The main routes were highly traveled during the Middle Ages. Today, thousands of "pilgrims"  set out to make their way to Santiago de Compostela.  The majority are hikers who walk the route for non-religious reasons: travel, sport, or simply the challenge of weeks of walking in a foreign land. No matter the driving force, many ultimately consider the experience a spiritual adventure of self reflection and renewal.

Cathedral of Santiago de Compostela

      I want to think I can do this---maybe next June when the weather is accommodating.  I have ordered two books.  One is entitled, A Pilgrim's Guide to the Camino de Santiago: St. Jean • Roncesvalles • Santiago (Camino Guides),’'which includes maps and more detailed information about preparation, costs, the daily itinerary, etc., and is written by someone who has done it.  I also ordered A Million Steps by Kurt Koontz who documents his experiences and how it affected him physically and emotionally.

      Ron is supportive of this crazy idea and says he will meet me at the end with a bottle of wine to celebrate my completion.  My son, Craig, is considering meeting me some where a long the way to walk with me (and provide acupuncture treatments).  A friend says she might do a hundred miles with me. 

      To be honest, I'm a little intimidated. I don't have the answers to my fears yet. I vacillate daily from "you can do it!" to "are you crazy!" 

      I am an ambivert which means I like to be around people but also am quite comfortable with solitude.  Will I adjust to sleeping in hostels with complete strangers---men and women---from all over the world?  Past hikers indicate, in addition to the awesome spiritual and scenic experience, meeting so many different "pilgrims" is a highlight of the adventure.

      I guess the biggest concern is my endurance.    Can I meet the physical challenges of walking 15-20 miles per day from one hostel to another for 40 or so days?  After all, I will be nearly 68 by the time I begin. I've also had occasional bouts of arthritis in my legs and knees in the past few years.  This always gets better with acupuncture, drinking tart cherry juice, and physical therapy.  Although, I have not received my books yet to guide me, common sense tells me I have to increase my walking now.  Consequently, in the last five days, I've gone from my normal average 2-3 miles of walking, 3-4 times per week to 5-6 miles every day.  Each day, for the first four days, my legs ached.  At the end of the day I was really tired.   For some reason, walking was not as strenuous today and my legs feel better.  Is my body beginning to adapt or did the hour long yoga class before I started walking make the difference?  Time will tell.  I plan to gradually increase the distance every week or so.

       Maybe I'll feel more confident by Christmas.  This should give me ample time to make travel arrangements.  Unless of course, somebody talks me out of it before then.