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.

Medrol Dosepak

Medrol (methylprednisolone) is a glucocorticoid similar to prednisone.  Available in 2mg, 4mg, 8mg, 16mg, and 32mg tablets, this steroid can be used to treat bursitis, rheumatoid arthritis, juvenile idiopathic arthritis, ankylosing spondylitis, psoriasis, psoriatic arthritis, and a variety of other conditions.

A fast-taper methylprednisolone dosepak contains 4mg pills conveniently arranged for easy dosing:  6 pills the first day, 5 pills the second day, and so on, decreasing one pill per day.

medrol pack

At my pharmacy, the cash price for these twenty-one pills is $33 ($1.57 per pill); the cost is obviously in the packaging. The cash price for a bottle of seventy 5mg prednisone pills is only $10 (14 cents per pill).  4mg Medrol equals approximately 5mg prednisone, so this is a fair comparison.

Of course, buying a bottle of pills would require you to be able to count to six so you get the right number of pills the first day. It would also require keeping track of which day you’re on. That’s easier said than done, because any condition that would call for that dose of steroid probably puts clear-thinking on hold.  Nonetheless, a simple piece of paper kept on the kitchen counter with the pill bottle would suffice.  Another option would be to put a portion of the money saved toward a pill box (if you don’t already own one).  If you don’t want a bunch of prednisone left for future tapers, you’d still save money buying prednisone instead of Medrol, and just throw the unused medicine in the trash.

Cost is not the only drawback I find.  It amazes me that something marketed for people who might be having difficulty using their hands is so incredibly difficult to open.  Be aware that if you use this medicine, you might need assistance getting at your pills.

If your doctor ever recommends a Medrol dosepak for a quick steroid taper, it might be worth discussing a more economical and easy to use medicine.

Tamiflu

Did you know that Tamiflu isn’t just used to treat confirmed influenza?  If you’ve been exposed, Tamiflu can be taken to prevent the flu (or at least minimize symptoms) after you’ve been exposed.

016As a person on multiple immunosuppressant drugs, flu season is not my favorite time of year.  I get my influenza vaccine hoping to stay healthy, but the shot is only about 60% effective, and the world is full of people who don’t understand how irresponsible it is to contribute to the spread of preventable disease.  $35 to greatly reduce my chances of dying from the influenza seems like a bargain.

A few days ago I was exposed to what was a few hours later confirmed to be influenza A.  This, I determined, was a situation worthy of skipping both my biologic and mtx.  My doctor determined that it was also worthy of a round of tamiflu.  With known exposure, tamiflu can be used to prevent the flu — or at the very least, make the case less severe than it would otherwise have been.  I had not known that Tamiflu could be used prophylactically.

If you are exposed to a confirmed case of the flu, there’s no need to spend any time worrying about whether or not you’ll get sick.  Talk to your doctor.

_______
How Flu Spreads
Tamiflu