Endurance

Perturbed, frustrated, aggravated, irritated, upset, disturbed, annoyed, bothered, discouraged, disheartened, dispirited, downcast, dejected…  I need a bigger thesaurus.

When I left rheumy #1 for rheumy #2, I was clear about what I wanted:

  • a doctor with whom I had good rapport
  • a doctor in private practice, not owned by a hospital
  • a doctor who saw patients without shuffling them aside to a PA

For a few years things were going well.  Unfortunately, about a year ago my doctor’s practice sold out.

Once they were owned by a hospital, things changed.  First thing to go was the excellent front office staff.  They were moved elsewhere within the system and replaced by lemon-suckers who just seem to be going through the motions.  Next my doctor’s MA (who always managed to process prescription refills within one day) disappeared; it now takes five days to approve refills and there’s a different MA every time I’m there.

To add insult to injury, the hospital brought in PAs.  Instead of seeing my private MD, I now see a hospital-employed PA.  The PA might be a nice person, might be competent after learning to do joint exams without causing pain, might be a lot of things. What the PA is not is the doctor with whom I established a relationship.  I feel betrayed.

Now the office is calling to move my appointment.  It seems that the hospital system has decided to open another clinic at another one of their hospitals.  My choice is to drive an extra 30 minutes or move my appointment to a different day.

I want out, but there doesn’t seem to be any point in finding a new doctor right now, since whoever I find could eventually sell out, leaving me right back in the same position.  Instead, I will show up for appointments as rarely as possible so that my prescription refills will be approved.  My youngest child is twelve; in six years he’ll head to college, and four years after that he should graduate.  That means I just have to deal with this ten more years before we can retire and move away.  If I can get away with follow-up visits every six months, that means I only have to go in twenty more times.  By then, I expect the medical profession to have undergone significant changes, and finding a new rheumy will likely be a completely different situation than it is now.

Twenty might sound like a lot, but I remember how many appointments I had the first few years after I was diagnosed. Twenty is nothing.  Although I was unhappy about things when I started this post, I actually feel better now.  I can endure twenty visits.

Sun Sensitivity

SunWarningAvoiding sun exposure — a requirement with certain prescriptions — presents a problem sometimes.  Since I normally burn in 15-20 minutes and am afraid to find out what a medicine that makes me more photosensitive would do, I usually use lots of sunscreen and stay out of the sun.  Sunscreen use is important, but not a cure-all for photosensitivity.  When outdoors, it’s important to find (or create) shade.

This past spring and summer I found avoiding the sun especially challenging since my boys played baseball. Outdoors. Every. Day.  High school baseball began in March and ran through mid-May, while community league for my younger son began in April with games in May and June, followed by five weeks of all-stars tournaments, culminating in July’s playoffs.  August saw even more time out in the sun after invitations to turn out for fall ball.  To avoid some serious photosensitivity rashes/blisters, watching my kids play baseball has required some creativity.

I present to you (drum roll…)

The Baseball Chair

Baseball Chair

Unlike commercial portable chairs, my awning extends out to the sides, in front, and behind for extra shade.  It has a flap to block evening sun from the back, as well as flaps that can hang down on the sides when needed.

I can’t tell you the number of parents who approached me and asked about my chair – where I got it, where they could find plans, if I’d make one for them, if they could snap photos and try to make their own…

If you want to make your own chair to watch kids’ sports outdoors without breaking out in hives, this is easy to build.  It has to be for me to make it.  As to cost, I can’t say since I used materials I had on hand:  old PVC pipe and decorator fabric that is now hopelessly out of style.  The base and uprights are made from Schedule 40 so it’s nice and strong, as is the back bar of the awning.  The sides and front of the awning are of the lighter-weight Class 200 PVC.

Notice the handy pockets added to the sides. These are especially nice for holding pencils, the scorebook, snacks, etc.  I want to add a cup holder to one of the uprights, and am looking for a battery-operated fan — that would have been really nice during some of those extra-hot games.

Covered Baseball ChairSince I live in western Washington where we are noted for our liquid sunshine, I made a rain fly for the chair, too.  That aspect of the chair still needs some fine-tuning, but I can attest to the fact that it kept me and the scorebook dry during a few games that were eventually cancelled a few innings later than they should have been.

Parts list:

  • (8) 90-degree elbows
  • (4) 45-degree elbows
  • (4) T’s for the awning
  • (2) T’s for each side you want to hang a pocket on
  • (2) long bolts (must be longer than 2x pipe diameter)
  • (6) washers
  • (2) acorn nuts (rounded caps to completely cover the ends of the bolts)
  • PVC pipe – exact lengths depend on how tall you are, so I won’t give dimensions
  • canvas or strong fabric – you’ll get much better shade if you use a double-layer
  • clear plastic, optional

A few tips I discovered:  regulations change frequently, and plumbers end up with pipe in the warehouse that they can’t use.  Sometimes they’re willing to give it away if you catch them on the right day and ask nicely.  This is not true of the big box stores where you buy materials for do-it-yourself projects.  If you must purchase connectors (T’s and elbows), they’re less expensive in packs of 10.  Some PVC will not stand up to sun exposure, so it’s important to use the right type.

Should We Worry About Ebola in the West?

In 1976, in a small village near the Ebola River in Zaire, an unusual disease was identified.  Symptoms initially were similar to the flu:  sudden fever, muscle pain, headache, weakness, and sore throat.  Later symptoms included nausea, vomiting, and diarrhea.  Some patients also experienced bleeding.  It was a horrible disease, and 280 of the 318 victims died.  The disease was named Ebola.

That same year, the identical symptoms showed up in Sudan, killing 151 of the 284 people infected.  Scientists discovered that these two outbreaks were caused by two different species of Ebolavirus.

Ebola TaxonomySince then, three other species have been identified.  The Ebolavirus identified in Reston, Virginia appears to be asymptomatic in humans.  Not so with the species discovered in the Tai Forest of the Ivory Coast.  The Ebolavirus discovered in Bundibugyo, Uganda, like the species discovered in Zaire and Sudan, can be fatal.

 

However, those who claim that Ebola Virus Disease (EVD)1 is 30%-90% deadly are playing fast and loose with the numbers.  Obviously there is a huge difference between 30% and 90%, and it behooves us to be more precise and truthful.  The mortality rate varies greatly depending on the species of Ebolavirus.  According to WHO, prior to this year, 78% of people infected with Ebolavirus-Zaire died, while none of the people infected with the Ebolavirus-Tai Forest or Ebolavirus-Reston died.  The mortality rate for those who contract Ebolavirus-Sudan is about 54%, and 32% for those infected with Ebolavirus-Bundibugyo.

Ebola Mortality

Doctors have been working on a vaccine, but none have yet been approved.  There is also progress being made on an experimental drug that might be used for treatment in the future. Meanwhile, doctors have discovered that supportive measures can make a big difference in patient outcomes.  As seen from this year’s statistics, providing IV fluids and oxygen, maintaining electrolyte balance and blood pressure, and treating complicating infections leads to many more survivors.  Despite the horror of the recent outbreak of Ebolavirus in areas of Africa that have never before known to be afflicted, the statistics look better than they have in the past.

EbolaMortalityYTD

Known natural reservoirs (hosts) of Ebolavirus are fruit bats.  They spread the disease, it is believed, through saliva and feces.  In particular, the bats eat part of a piece of fruit but leave the rest.  Wild animals (most notably primates such as monkeys) then eat the leftover fruit and thus contract the disease.  People, then, come in contact with infected animals and themselves become infected.  In Africa, eating “bush meat” is a risk factor for Ebolavirus, as is direct contact with infected animals or people.  Outbreaks have also occurred among those who attended funerals of victims (do not touch the deceased).  Symptoms begin within 2-21 days (usually 8-10) of exposure.

Unlike some other viruses, Ebola does not appear to be airborne.  Direct contact is required.  Family members who care for a sick loved one are the most likely victims. Healthcare workers are also at risk if they do not wear protective clothing.  Those who do not come in contact with an infected person or animal will not be infected.

Recently an American with Ebola was transported back to the United States for treatment, and there has been an outcry.  People have heard that Ebola is deadly; it’s even been classified as a possible weapon in germ warfare.  Therefore, these frightened people conclude, nobody with a known case of Ebola should receive state-of-the-art treatment in the U.S.

Their logic escapes me.  We permit free travel.  Any tourist or businessman could contract Ebola while in Africa and return home before symptoms begin.  Once symptoms occur, that person would expose family members and medical personnel.  Any number of people could become ill before an accurate diagnosis is made.  This is not hypothetical.  Consider Patrick Sawyer.  Mr. Sawyer visited Liberia and was on his way home, but stopped off in Nigeria where he fell ill and infected others before he died.  It is just by chance that he became sick while in Nigeria instead of on the airplane or after arriving home.  In another case, less-publicized, we consider a man currently in a New York hospital.  He became ill after returning home from a visit to Africa, and is in isolation.  Anyone can become infected while travelling and take the new disease home to unsuspecting family and friends.

Dr. Brantly and Mrs. Writebol, on the other hand, are not bringing a disease home and passing it along to anyone.  They were transported in a special airplane for the purpose of not spreading the disease.    After landing, Dr. Brantly was then moved to the hospital in a special vehicle designed to prevent contamination of others.  Finally, at the hospital he is carefully quarantined so that nobody else will become ill.  Mrs. Writebol is currently in transit, but the same precautions are planned.  The United States is far less likely to succumb to an Ebola outbreak introduced by Dr. Brantly or Mrs. Writebol than from miscellaneous travelers who return home unaware that they’ve brought along a new virus as a souvenir.

This is not idle speculation.  In 1994, a scientist contracted Ebola while performing an autopsy on a monkey.  That patient was treated in Switzerland, yet there was no outbreak in Switzerland.  The fact is that medical personnel in first world countries take precautions that aren’t as easy to take in many parts of Africa.  It is unlikely to become a problem outside the African continent.

Two years ago there was an Ebola outbreak in Uganda. At the time, CNN raise the question, “Could the Ebola outbreak spread to the U.S.?”  The answer then was that it’s possible but unlikely.  Today the answer is the same.  Ebolavirus is spread through direct contact, making it much more difficult to spread than influenza or the common cold.  People must directly touch an infected person’s skin, clothes, linens, or body fluids to contract the disease.  Use some common sense.  Don’t pick up fruit off the forest floor and eat it.  Don’t play with monkeys (dead or alive).  Don’t eat bush meat.  And, if you absolutely must touch other people’s body fluids, employ a protective barrier.

Ebola In Africa

Edit to add: the virus responsible for the outbreak in West Africa is 97% similar to the Zaire strain, but due to the differences is being called a sixth strain: Guinea.  It appears that the first victim was a two-year-old in the forests of Guinea, and that the disease was then spread by a travelling health-care worker.  High mortality rates in Guinea were due to initial lack of recognition of the disease.

________

1 formerly called Ebola Hemorrhagic Fever (EHF)
2 Zaire’s name changed to Democratic Republic of the Congo; it’s the same country

Resources: