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!

In the Kitchen

Wouldn’t it be nice to have hands that worked without aching?  Unfortunately, meds to treat autoimmune arthritis only slow the disease; they don’t halt progression or provide a cure.  In the kitchen, achy hands make meal prep a challenge.

CanOpenerAlthough I try to cook with fresh ingredients, sometimes it is necessary to open cans.  My preferred method of opening a can has been to hand the can and opener to someone and raise my eyebrows in a silent plea for help.  Unfortunately, my kids are growing up and either playing sports or heading to college, which throws a wrench in my can-opening options.  Everyone in the house recognized the problem, so my kids did some research in an attempt to find me the best electric can opener on the market.  I have great kids!  They gave me a Hamilton Beach 76606Z for Christmas, which means I’ve had it long enough to know that it is a very good can opener.  I can now open cans even if there’s nobody else in the house and my hands and wrists prevent use of a traditional-style can opener.

MandolineThe other kitchen acquisition that has helped tremendously is a good-quality mandoline.  Note the “good quality” modifier. I used to have an inexpensive model, and cutting things with it was an exercise in frustration.  The one I replaced it with is fabulous.  I first saw it demonstrated at a fair, then did some research before buying.  The price on Amazon has come down in the past year and beats the fair price by a good bit.  This mandoline will slice tomatoes, pickles, mushrooms, potatoes, and probably anything else you might want to slice (except avocados — it gets jammed on the pit when slicing so effortlessly you don’t realize you’re already that far into the fruit).  I like the fact that the slice thickness is determined by a fixed bed.  You choose the thickness you want and easily insert the appropriate cutting bed. My old mandoline had a knob that I turned to adjust the cut-depth and it had a tendency to slip while in use.  With this setup, there is nothing that can slip and inadvertently change the slice-size.  I also like the V-blade, because it will slice soft things like tomatoes just as perfectly as it slices firm foods like potatoes.  I also like that it’s mostly stainless steel instead of plastic. The Borner V6 comes with a holder that can be mounted on the kitchen wall.  Since there’s no space on my walls to mount anything, I just leave it sitting on the counter beside my KA.

My favorite cooking tool is a crockpot.  Any kind, every kind.  Start oatmeal at bedtime and it’s ready in the morning when you get up.  Start supper in the morning, and it will be ready to eat when you get home in the evening.  Everyone should own at least one crockpot (IMHO).

If your budget is like mine, you can’t afford a personal chef. A few good kitchen tools will make a world of difference.

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Disclaimer:  while I’m not opposed to people sending me gadgets or money, that didn’t happen here.  I bought my mandoline and crockpots, and my kids bought my can opener.

Types of Psoriatic Arthritis

There are different types of psoriatic arthritis.  Classification varies, depending on the source:

  • Asymmetric Oligoarticular PsA affects fewer than four joints, and (unlike RA) does not affect the same joint on both sides of the body.  This type of PsA is generally considered mild due to the small number of joints affected.  “Mild” is a comparative word that does not necessarily take into account the impact of the disease on a person’s life.  Approximately 70% of people with psoriatic arthritis have this type.
  • Symmetric Polyarticular PsA affects four or more joints, and (like RA) can affect the same joint on both sides of the body.  This type of PsA is more severe since more joints are involved.  Approximately 25% of people with psoriatic arthritis have this type.
  • DIP Predominant affects mainly the distal interphalangeal joints of the fingers and toes.  Inflammation of the DIPs is a clue that the autoimmune disease involved is PsA instead of RA.  Approximately 5% of people with psoriatic arthritis have this type.
  • Arthritis Mutilans, aka chronic absorptive arthritis, affects fewer than 5% of PsA and RA patients.  This type is severe and causes deformity.
  • Enthesitis is inflammation of the tendon/ligament insertion sites (where tendons/ligaments attach to bone). Over time, fibrosis or calcification can occur.
  • Spondylitis includes inflammation of the cervical spine (neck) and sacral spine (lower back), as well as hands, feet, hips, knees, elbows, and other joints as in RA and symmetric PsA.
  • Dactylitis affects fingers and toes, and indicates swelling of the entire digit.  This is in contrast to RA, wherein joints will swell, but not entire fingers/toes.

ClASsification criteria for Psoriatic ARthritis (CASPAR) requires inflammatory articular disease, but not necessarily visible swelling or symmetry.  Spine pain, enthesitis, or tendonitis are sufficient.  If that criteria is met, then at least three points from the following five categories qualify a person for a diagnosis of psoriatic arthritis:

  1. Psoriasis — either
    1. current psoriatic skin or scalp disease diagnosed by a rheumatologist or dermatologist (2 points), or
    2. personal history of psoriasis (1 point), or
    3. 1st degree (parent, child, sibling) or 2nd degree (grandparent, grandchild, aunt, uncle, nieces, nephews, half-siblings) blood relative with psoriasis (1 point)
  2. Psoriatic nails (1 point)
  3. Negative RF blood test (1 point)
  4. Dactylitis (swollen “sausage” fingers/toes)– current or history (1 point)
  5. New bone formation near joints visible on x-ray (1 point)