Dr. Google

You don’t have to read medblogs for long to learn that doctors do not appreciate it when patients research symptoms on the internet, then show up for an appointment with printouts.  Irritating the person who’s supposed to be helping us isn’t a good idea, so it makes sense to not take printouts to appointments.

That doesn’t mean patients can’t read reliable websites (Up-to-Date and Mayo Clinic are good places to start).  It just means that we ought not tell the doctor how to do his/her job.  It goes over much better if we don’t provide a diagnosis; patients provide symptoms and let the doctor come up with a diagnosis.  At least that’s what the medblogs say.

But what if the doctor’s diagnosis is wrong?

I’ve written before about the red sores that my rheumatologist and family physician thought might be psoriasis, but my dermatologist diagnosed as nummular dermatitis.  Those &#%$ spots show up if I miss one of my cimzia/mtx injections, and take a couple months to go away — unless I dig into my stash of prednisone, in which case they are gone in a couple weeks.  It’s obviously something related to the RA, but what?

Well, recently I googled another symptom (completely unrelated, I thought) that has plagued me for well over a year.  I find it bothersome, but not something I’d dream of making an appointment about. It certainly would never come up in the course of conversation at the doctor’s office.  However, in reading the differential diagnosis for that symptom, up popped vasculitis.  Really?  Others with RA have mentioned vasculitis, but I didn’t know much about it, so started reading.  The articles include photographs of red sores, mainly on the legs, that look very much like what my dermatologist said is something completely different. Reading about vasculitis is frightening, so I hope that’s not what this is.  But I need to know.

At my next appointment, I think I will ask if it’s possible that those red blotches all over my skin could be vasculitis instead of nummular dermatitis. The trick is finding out without annoying my doctors.

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.