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.

A Day in the Life – Now

Contrasting what my life is like now, compared to when I was diagnosed, the difference is striking. Please read Part 1 first.

Things aren’t perfect now, but they’re so much better than back when RA first made its appearance.

In the mornings I wake and can stand up without crying out in pain. Jumping into the shower, washing, dressing, and all the rest are so much easier than back then.  It’s not perfect, and sometimes my shoulders make showering and dressing take a little extra time, but I no longer need to sit down in the shower, and it doesn’t take twenty minutes just to get up in the morning.

Note that I didn’t say “get out of bed in the morning.”  That’s because, due to my back, I’m sleeping in a recliner instead of my bed.  This situation needs to change, but in the grand scheme of things, it’s minor.  I’m in a house, not under a bridge or in a car.  My back has improved some, and eventually I’ll return to sleeping in my bed.

Once I’m dressed, I’ll quickly check Facebook, but have too much to do to spend much time on the computer.  Heading downstairs, I realize that my knees don’t hurt like they used to.  Those little things are so easy to take for granted.

Quickly I grab a bite to eat, then check my in-box.  That’s where my kids stack all their schoolwork for me to check.  When I’m lucky, everything is checked and back on the appropriate shelves before the kids wake up.

I’d like to say that I exercise every morning, and I did for a while, but once the garden is in the ground, formal “exercise” fades away until fall when I no longer am doing work outside.  I fully intend to resume my exercise routine after the garden has been harvested and preserved.  For now, there’s a kitchen full of either clean dishes to put away or dirty dishes to wash, and a mountain of clothes in the laundry room.  There are animals to feed, eggs to gather, children to tend, and it seems there aren’t enough hours in the day.

The kids need to get their schoolwork done by lunchtime. Science experiments can take place in the early afternoon after lunch.  Here is where I really notice a difference. Before I got my diagnosis and effective treatment, my day was mostly done by noon. I was exhausted and couldn’t do anything else.  Now, things are different.

For most of the school  year we leave the house at 1:45 because my son plays sports and needs to be dropped at the high school for practice, then I must return at 4:00 to pick him up — except on game days, when timing is different and the whole family piles into the car so we can watch the team play. We attend all home games as well as away games that are within an hour of our house.

To some people, that might sound perfectly normal.  Six years ago it would not have been possible.  Now I can do things in the afternoon and evening without sleeping the next two days away.  I can do more than three things in a day, and don’t have to run all errands before lunchtime.

If you want more examples, consider last month (when I had zero posts). June’s schedule was different than the main school year, partly because the public schools were dismissed, and partly because sports coaches are crazy.  To tell the truth, it wouldn’t have been possible if my RA wasn’t mostly well controlled.

I am now a chauffer.  Three days a week, my son has driver’s ed from 10:00 until noon, and it’s a forty-five minute drive to get there. Then there’s summer basketball, with games played Monday and Wednesday nights, and team practice Tuesday and Thursday nights, plus travel to tournaments on the weekends. This child also has a lawn care job for which he needs transportation.

My other son is playing on a select basketball team and all-stars baseball team, which means he has weekly practices for both teams, and has weekend tournaments in far-flung cities. This requires driving. Lots of driving.  Fortunately I have two daughters who are wonderful young ladies. They agreed to help with transportation.

Before RA I never would have agreed to letting our sons have so many activities.  Now I view things differently.  This is not forever.  Since they are able to do these things now, they should take advantage of the opportunities because they might not be there in the future.  Both boys are learning how to judge what’s realistic, and this is a good age to learn not to overcommit themselves.  This has been a fantastic experience for them.

Busy? Absolutely!  And there is no way I could possibly have done it six years ago.  I am so fortunate that my doctor believes in treating RA aggressively so that I can have a life, and blessed beyond belief that I am one of those who respond well to treatment.