Keeping Busy Despite RA

RA meds work!  True, they don’t cure the disease, but they’re designed to slow down progression and make it possible to have a life.  I’d have to say that my life is a testament to how well my meds are working.

rheumatoid arthritis best blogs badgeA big thank-you to Health Line for honoring my blog while I was busy proving that RA meds can be effective, and congratulations to my fellow-bloggers also named.

 Before diagnosis, I remember having to limit myself to three errands a day. Two was even better.  Best was to stay home and not do anything.  Everything hurt, and I was just too exhausted to do anything.  Nothing could be done before 8 a.m., and I had to be back home by noon because my energy for the day was gone by then.

In contrast, now I’m able to go out and do things  — many things.  For example, between them, my two boys have had ten baseball games and two track meets in the past week.  After schoolwork in the mornings, we leave the house around 1:30 (way past noon), drop one son off for practice, drop the other off for his practice, stop at the store if needed, go home and make/pack dinner, then go back to pick up boys from afternoon practice (or watch & cheer if it’s a game/meet day). On baseball game days (most days, it seems), drive to evening games, some of which are an hour away, and cheer some more.  Thanks to RA meds, I can do more than three things in one day, and can be gone from the house past noon.  Honestly, my entire family’s life would be very different without biologics, because that’s what it took to get me to this point.

That doesn’t mean that I’m pain-free, or that there aren’t rough days, but things are manageable.

High school basketball begins in early November, as do practices and tournaments for my younger son’s select basketball team. Middle school basketball begins the first week in February, so the select team ends their season (thankfully we stop – some teams go year-round).  Then high school basketball ends a week later.  High schoolers have a week off before baseball turnouts, then games start the first week of March. Youth league baseball practices also start practicing in mid-February, so kids are doing both basketball and baseball.  Basketball season is over at the end of March, then track begins in April (right after school), as do youth baseball games (in the evenings and on weekends). The high school baseball season ends the first week of May, then American Legion teams start the next day. Unless the high school team makes playoffs, in which case kids are playing on two teams. Track ends the first week of June, but high school’s summer basketball program starts, so we’re still juggling three teams.  Baseball runs into July, but this year the coaches are trying to ensure that people have a break, so we’ll get most of a month off between the end of summer ball and the start of fall ball.  Fall baseball practices for both boys begin in August, with games running through October.  Then it starts all over again.

SportsCalendar

Sports weren’t like this when I was a kid (back when dinosaurs roamed the earth). Sports had distinct seasons, and coaches didn’t make kids feel like they couldn’t make the regular season team if they didn’t also participate in extended stuff.  The best I can do is juggle, try to teach about having some balance, and support my kids in pursuing their dreams.

But I can!  The way I felt before starting on a biologic, there is no way my sons would be able to play sports because I wouldn’t be able to transport them.  I can only imagine what family life must have been like for RA patients before biologics came out.

Plus, we still have cows, horses, alpacas, and ducks to feed.  Meals need to be cooked, laundry needs to be washed, and it’s nice to vacuum the floor every now and again.

My two sports-minded sons aren’t the only kids in this family.

  • My oldest just completed his junior year of college. He is currently in Greece.  A group of students have spent the past year studying Greek history (3 history credits), as well as physical setting of the Bible (3 Biblical Literature credits), and are now travelling in Greece to see the places they’ve been learning about.  Once he returns, he has an internship set up (same place he worked last summer).
  • My older daughter is a college sophomore, and is taking time for some real-world experience before finishing her degree.  She is fundraising, and leaves soon for a six-month trip that begins with 12-weeks of training, followed by hands-on medical missions work.  They’ll start out at a clinic in Kolkata, then head either to southeast Asia, Africa, or Nepal (depending on needs at the time).  In addition to earning money for her trip, she’s doing all the pre-trip things one needs to do like get travel vaccines, find a good-quality backpack she can live out of while she’s gone, learn about the places she’ll be going, renew her passport, apply for visas…
  • My younger daughter is nearly done with her high school work and took two dual-credit courses this year.  She just registered for classes at her first-choice college, so is doing all the college prep activities that 18 year olds do.

Life is busy!  I am so thankful that I have been able to keep up with my kids’ activities!

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.

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.