Travelling

Travel is exhausting.  Having RA certainly doesn’t make things any easier.  What’s the best way to transport meds?  What if prescriptions need to be refilled during the trip?  Is it possible to spend twelve-hour days in the car without every joint gelling?  To have the best trip possible, it’s good to plan ahead.

My oldest child is now a college freshman, and to make the transition easier on everyone, our whole family made the trip to help big brother settle into his dorm.  Our first day we travelled south to Portland, OR, and across to Boise, ID.  The second day we drove to Denver.  Our third day wasn’t quite as long because we didn’t leave Denver until after lunch, but we still travelled through Oklahoma to northern Texas.  The fourth day we completed the first leg of our journey and delivered our son to his school, two-thirds of the way across the country.  We spent a few days there, and are now half-way home.  Aside from everyone being tired of long car trips day after day, it has gone well.

Refills

Your pharmacist will not love you if you stop by the pharmacy on your way out-of-town and ask for early refills on everything.  I talked with my pharmacist a month in advance to find out what special requirements they had for getting meds early.  My pharmacy wanted a week’s notice.  That week gave the pharmacy time to contact my insurance company to get a vacation override.  I picked up all my refills two days before we left town (allowing a small cushion in case something went wrong).  Your pharmacy might be different, so talk to the pharmacy staff and make sure you get all your refills before it’s time to leave.

Transporting Meds

When travelling out-of-country, it’s a good idea to keep all prescriptions in their original bottles with the original labels.  Since I was not leaving the country, I filled all my pill boxes and left the bottles at home.  The biologic required special handling, though.

Biologics need to be refrigerated, but it’s not necessary to buy one of those refrigerators that plug into the car’s lighter-socket.   $2,700 worth of medicine is worth some TLC.  I placed my pre-filled syringes into the little insulated travel-bag from Humira, along with the bag’s ice pack.  I then placed that entire bag into the insulated travel-bag from Enbrel, along with its ice pack.  That bag then went into our large ice chest.  I don’t think the medicine would have stayed cold enough in only one bag.  Everywhere we’ve travelled, the weather was in the 90’s, and most nights all of the ice packs were melted.  Fortunately, the medicine was still cold.

On my first trip travelling with Enbrel, one of the hotel refrigerators got too cold and froze my medicine, so this time I took extra precautions.  Every night, I left the medicine in the smallest insulated bag (unzipped about one inch) and placed it into a refrigerator.  The insulation protected the medicine from freezing.  If you don’t have access to multiple insulated bags, my pharmacist suggested wrapping the medicine in a towel before placing it into the hotel refrigerator.

No Gelling

Gelling is the phenomenon that describes stiff joints after inactivity due to synovial fluid that doesn’t stay where it belongs.  The key to preventing gelling (if your meds aren’t doing that for you), is to keep moving.  Move the hands, move the ankles and knees.  Move the shoulders and hips and any other joints that are likely to otherwise stiffen.

Flexing the hands periodically can help if you’re driving.  I like to knit while travelling (in the passenger seat).  This keeps my hands, wrists, and elbows moving, and gives me something to show for all that time sitting in the car.

Ankles should be moved, too.  If you write the alphabet with each foot, that will nicely flex your ankles and prevent stiffness (and strengthen the ankles if you put weights on your feet).  I find that simply by changing position so that I can move my feet around, I also move my knees.

A good shoulder roll and upper-arm stretch takes very little time, and is quite helpful in preventing stiffness.

The final thing that I do to keep from getting too stiff is to stop and walk around at least every two hours.  The best way to get the driver to make frequent stops at rest areas is to make sure everyone drinks plenty of fluids – easy enough when the weather is hot, but a bit trickier during the winter.

Many hotels now have a fitness center, so I’ve found it very easy to exercise at the end of a long day, which is another way to make travelling with RA a little easier.

Do you have special things you do to make travel easier?

Are You Sick and Tired of Being Sick and Tired?

There was an old annoying radio commercial with the line, “Are you sick and tired of being sick and tired?”  Obviously it wasn’t a good commercial since I don’t remember what product it was selling, but I remember that line.

I am tired.  Tired of needing to see so many doctors.  Tired of taking pills.  Tired of needles and shots.  Tired of all that money spent at the pharmacy.  Tired of EOBs.  Tired of it all.

Last spring, due to my family’s needs, I rescheduled two doctor’s appointments, and it was wonderful!  I was surprised at how liberating it felt to not go to the doctor.  Instead, I felt almost normal – out living my life as if I were in ignorant bliss of autoimmune diseases and the terrible impact they can have on individuals and families.  Not  seeing any doctors felt like a vacation.

That vacation was so wonderful that I quit my job as “patient” and vacationed some more.  No visits to the pharmacy.  No pills.  No shots.  No perusing of EOBs when they arrived.  I just lived normally, and it was great.

I wonder if maintaining an intense focus on one’s medical condition is good.  Having your life revolve around doctor’s appointments, trips to the pharmacy, physical therapy, weekly shots, numerous daily pills, keeping track of what the insurance company is doing, and staying on top of tons of medical bills is exhausting.

The problem with quitting is that I now have a stack of old EOBs to wade through.  I have a pile of prescription receipts to file.  There’s a cupboard full of pill bottles that should have been emptied but weren’t, and some fancy pill-reminder-boxes that have stayed empty far too long.  Quitting might not have been a good idea.

Worst of all is that I knew better.  I knew that those meds have a purpose, but I loved the freedom of not thinking about RA and its treatment all the time.  Those meds don’t work from the cupboard; I have to actually swallow the pills and inject the injectable meds if they’re to do their jobs.  Oops.

So now, I’m looking for balance.  I can’t ignore everything, but I don’t want to obsess over RA, either.  Neither extreme is healthy.  I’ll see if I can find a good balance.

NOT

Continued from Chronic & HYSBYW

Chronic pancreatitis.  Serious.  Poor prognosis.  For three distressing weeks I dealt with that diagnosis as I waited and waited for yet another doctor’s office to schedule an appointment.

Aggravated at waiting forever to hear back from the physician to whom I’d been referred, I wrangled a different referral elsewhere.  In an effort to be thorough, I picked up disks with all my imaging studies to take to the new doctor.

Before delivering those disks, I popped them into my computer.  Not only do the disks contain images, they also contain the radiologist’s reports.  At the very top of one is a note that a correction to the report was discussed with the doctor’s PA.  The correction?  One word was omitted from the original report.  It should have read that there is NOT necrosis…

Capital letters.  NOT necrosis.  Not chronic.

This correction was dated two weeks before the doctor delivered the bad news.  He somehow didn’t see the corrected report and didn’t see the PA’s notes in my file.  He was too busy typing on his computer to look at me.  Apparently he was also too busy to look at all the reports, since the report on the second CT was even clearer.

And I’m wondering. When would I have learned this if I hadn’t looked at those computer disks and opened the radiologist’s reports?  What was that doctor thinking?  I am so angry that I spent three weeks stressed about this because he didn’t read the reports and so gave me the wrong diagnosis.  I understand that mistakes happen sometimes, but this guy just glanced at the initial report and never bothered to read it, never bothered to read the corrected report, and never bothered to so much as glance at scan number two.

While I am dismayed that the wrong diagnosis was delivered, I am relieved to know that I’m not dealing with another chronic condition.  Acute is such a nice word.

I saw a second gastroenterologist in a different hospital system.  No accusations of being a lush there.  Quite the opposite.  They read the radiology reports and told me that my case is very normal:  70% of cases of pancreatitis are women with gallstones.  That’s not the only contrast in the care they provided.  The first GI didn’t even read the reports; this second guy looked at the CT images and tracked down a radiologist for help interpreting them.

The second doctor, who I saw initially the day after I phoned for an appointment last week, is working on fitting me in to get the procedures done next week.  Next week!  Not next month or the month after.  Next week.  As a bonus, I don’t have to drive clear to Seattle.

NOT chronic.