Life Goes On

First, a big thank you to the people at Healthline for their kind words, and including ∞ itis in their list of Best Rheumatoid Arthritis Blogs of 2014.  Thanks also to those readers who continue to follow despite my sporadic posting of late.

To those who emailed and asked how I’m doing, well… I’ve been better, but I’m on still on the top side of the grass. Our family has now met our annual $1,500 deductible on two family members.

My shoulders have been bothering me for quite some time (even worse than usual), and then my back joined in. For a while my back was so bad that the muscles would spasm any time I moved. The first time was quite scary, and I wondered if I was having a heart attack. Fortunately, that was not the case.  The pain, however, made getting into and out of bed impossible, so since December I’ve been sleeping in a recliner.  With flexeril and rest the muscles finally stopped spasming, but I still have not been able to sleep in my bed.

Based on my discussion with my rheumatologist’s PA (which is a whole ‘nother rant), I thought the treatment was going to be a referral for PT and a quick steroid taper; then the MD came in and decided that all we needed was spine x-rays. I swear that doctor has ordered more x-rays than I ever thought I’d see in a lifetime.

It doesn’t seem to be asking too much to feel well enough to live my life with some semblance of normalcy. Rheumatologists tend to focus on different things than I do. She’s wondering if what I have is PsA instead of RA (which I have thought from very early on), and recommended a biopsy of my rash.  When I reminded her that the dermatologist said a biopsy isn’t necessary because it’s definitely nummular dermatitis, not psoriasis, she suggested a second opinion.  However, it will not affect my treatment one way or the other; it’s just to satisfy her academic curiosity.

Umm… No.  All procedures have risks.  If she wants to foot the bill to satisfy her curiosity, then we could discuss the risks involved, but I’m not going to take on additional risk and expense when it won’t make any difference in my treatment.

This means that I left the rheumatologists office still feeling crummy, with orders to be irradiated again, and quite frustrated about this entire situation.  My family physician saw me a week later, injected one of my shoulders with kenalog, ordered an x-ray (!) of said shoulder, and wrote a referral to PT.  Interestingly enough, the shoulder injection made my back feel better.  The physical therapist suspects that the back pain is due to compensating for my shoulder issues.

Thanks to PPACA, my insurance is so fussy about PT that there have been numerous complaints filed with the insurance commissioner. I can only have five or six visits, then have to have a new evaluation and wait for them to decide whether or not to approve another handful of visits.  This means that every time a person starts to make progress, they then go two weeks without PT, negating all benefit of the previous visits.

It’s all quite frustrating.  In the past, three or four weeks of PT were all that was needed for me to feel much better — at least enough that I could be released to do exercises on my own at home.  Now, my shoulders hurt worse, and in more places, and the biceps have both started hurting, too (which the PT says it because the biceps are doing work that the rotator cuff muscles should be doing). I’ve even started having trouble with one of my elbows, which makes the PT wonder if something is torn. I really don’t need the expense of an MRI on top of everything else!

Apparently, the fact that I’ve been doing some gardening despite “claiming” that my shoulders hurt is an issue for the insurance company.  It’s not like I’m swimming or rock climbing! I’m making sure that my family will have food to eat!

Despite RA, I still have a life. My two sons still at home played basketball this winter, followed by baseball this spring. Now the high school is gearing up for summer basketball and the baseball coach wants the kids to play $500 summer ball which conflicts with $150 basketball. My younger son is also playing on a year-round select basketball team.  If you think that means I have been driving from one sporting event to the next and wondering if I need to get a job to pay for all this, you’d be right.  Due to these sports, somehow I also ended up in the high school booster club.  Last season there were some decisions made with which I disagreed, so now I’m juggling meetings on top of everything else, trying to have a say in what happens.

And life goes on. I’m still figuring out how to cope, how to do things with the least expenditure of energy (so that I’ll have energy left for fun things like watching my kids’ sports teams), and how to have a full, un-whiney life with RA.

RA and Your Mouth

Imagine a beautiful weekend morning.  The weather is sunny and warm, and with no commitments to go anywhere until after noon, you can stay home and tackle all those outdoor projects that you’ve been wanting to do.  You might change the oil in the car, mow the lawn, weed the garden, or prune the hedge.  After a few hours, your tummy starts growling and you head inside for lunch.

Do you head straight for the refrigerator?  I hope not!  Most of us would wash our hands before touching food.  Even though we’re busy and it takes extra time, we know how important it is to clean our hands first.

Just as it’s important to clean our hands before eating, it’s important to clean our teeth after eating.  The fact that we’re busy is irrelevant.  If we have time to eat, we have time to brush our teeth afterward.  It’s especially important if you have RA.

There have been many studies published about a possible link between RA and gum disease.  The results are by no means conclusive.  Some studies suggest that people with gum disease have a greater likelihood of developing RA.  Other say that those with RA are more likely to develop gum disease.  Peridontists reject the idea that there is a link, claiming selection bias and other errors in the studies that suggest a link between the two.  One alternate-med site goes so far as to claim that RA is caused by dental infection, particularly dental work (root canals, fillings, etc.) that got infected but was never treated.  I would scoff, except that the timeline between my first crown and the onset of my RA symptoms makes me wonder.  It would certainly explain why some people respond so well to antibiotic therapy.

Regardless of how you view the evidence, the consensus seems to be that there are at least two factors involved:

  • RA is a systemic disease, and the immune malfunction that causes joints and organs to be inflamed also causes gum inflammation.
  • People with RA are sometimes in too much pain to properly clean their teeth, which can quickly lead to/worsen gum disease.

People with RA need to be particularly vigilant about dental care.  We need to take three important steps.

Floss at least twice a day.  If swollen, painful hands can’t grasp dental floss or a holder, consider a waterpik.  If flossing hurts and causes your gums to bleed, it is especially important to floss.  Two weeks of careful flossing should eliminate bleeding gums (which does not imply that it’s okay to stop flossing!) — if not, dentists recommend a checkup.

Brush after eating. Every time.  No excuses.  If you have time to eat, you have time to brush.  Brushing right before bedtime is also recommended — especially if you’ve snacked after supper.

When uncontrolled RA makes the toothbrush difficult to hold, it’s possible to pad the handle of a “normal” toothbrush to make it easier to grasp:

  • Slip a bicycle hand grip over the toothbrush handle
  • Stab a hole in a tennis ball, then put it on the end of the toothbrush
  • Shove the toothbrush handle into a wrist- or thumb brace

Another good option is an electric toothbrush; they have larger handles and also brush more effectively.  If you’re no more willing to spend $130 for a toothbrush than I am, there are other options than the pricey model recommended by dentists.  The toothpaste aisle in the grocery store now carries a variety of battery-powered toothbrushes.  Most of them oscillate (not what my dentist recommends), but I found one for $30 that has a rotating head and does not hurt the mouth.

toothbrushesAs you can see from this picture, the handle of this electric toothbrush is significantly larger than the handle of a standard toothbrush.  It is very easy to hold.

Finally, use mouthwash every night.  There are many different kinds.  Some dentists recommend an antibacterial mouthwash.  Also, some dentists recommend that the mouthwash also contain flouride, calcium, and phosphate to help repair tooth enamel.

Sometimes we’re tired and sore, but following these three simple steps is important.  We’d all like to have pearly-white teeth.  There is a bonus.  Many people discover that keeping their teeth scrupulously clean leads to an improvement in RA symptoms.

____________

Protect Your Dental Health From Symptoms of Rheumatoid Arthritis

Associations between Periodontitis and Systemic Inflammatory Diseases: Response to Treatment.

Don’t Let Disability Keep the Dentist Away

Inter-relationship Between Rheumatoid Arthritis and Periodontitis

Periodontal Systemic Associations: Review of the Evidence

I Can. Can You?

“How do you have the energy to do all that?!  I’d be exhausted!”  That’s a comment I’ve heard quite a bit these past few weeks.  Truth be told, I am exhausted.  I’m also mighty happy to be accomplishing things.

Instead of avoiding taxing activities, I try to find the most efficient (and least expensive) way to get them done.  Yes, I get tired.  No, I can’t work a full-time job and then spend seven hours in the evening canning fruit like I did twenty years ago, but I can still manage to put enough by that we have food to eat without wondering how to pronounce all the chemicals on an ingredient label.

My tips for how I manage canning season with RA would just as easily apply to other situations:

Know Your Limitations
In preserving foods, the hardest part, for me, is picking.  There’s much more fruit than I’m physically able to pick – especially when the fruit is overhead and my rotator cuffs don’t want to do their job.  When I pick, I pick from the lower branches, and leave the upper branches for people who are a) taller, b) tree-climbers, or c) comfortable picking from ladders.  I know my limitations.

It can be difficult admitting that we have limitations.  We’d like to think we’re invincible.  RA teaches us otherwise.  Work with what you have.  Whether it’s canning or anything else, knowing our limitations is important.

Work Smart
One of my favorite quotes, by R.G. LeTourneau, is “Work smart, not hard.”

I look for ways to work smart.  When heavily laden branches are relieved of their burden, the boughs rise – usually several feet.   If I started picking apples closest to the ground, and worked my way upward, the branches would quickly spring up out of my reach, limiting how many apples I’d be able to pick.  Instead, I start picking as high as I can reach.  As the empty branches move upward, the lower apples are still within reach.  I’m able to pick much more by grabbing those upper apples before they move too high.

That’s true with the rest of life, too.  Hard isn’t required.  Focus on working smart.

Accept Help
Sometimes we want to prove we’re capable of doing things on our own, but it’s okay to accept help.  People want to help.  After canning twelve lug of peaches, knowing I’d be starting on apples next, I posted about it on Facebook.  The responses included:

If we put one more person in the kitchen for peaches, we’d be tripping over one another.  Apples are a different story.  Apples are tons more work than peaches, and I need help. I have to set aside my pride and ask – or accept help when it’s offered.  People really do want to help.

I’ve been thinking about this.  My children have no qualms about inviting friends over to help them pick apples.  The apples need to be picked, and it’s fun to do things with friends, so they invite friends over.  Everyone has a lot of fun. One weekend my daughters and their friend had been picking apples for about an hour when I heard a knock at the door.  It was the friend’s parents.  They’d heard we had apples to pick and wanted to help.

Whether it’s canning season, or grocery shopping, or working in an office, accept help!

Develop Efficient Processes
Know what you need to do, then figure out the best way to do it.  Apples and peaches, rhubarb and cherries, as well as beans, corn, and pumpkin are all very different foods; they need different processes.  It can be hard to break away from the habit of doing things the way we’ve always done them, but it’s a good idea to step back, analyze what’s truly needed, then eliminate all the extra (unneeded) steps to fine-tune your workflow.  Make everything as efficient as possible.

Always ask if there’s a better way to do things.  For example, every recipe I’ve ever seen for applesauce involves putting cut-up apples into a pot on the stove-top, adding apple juice/cider, then cooking carefully to avoid scorching the food.  My shoulders don’t like all that stirring.  My feet do not like standing at the stove long enough to cook apples down into sauce.  I’m guessing yours don’t, either.  There’s no need!  It’s significantly easier to make applesauce a different way.

It doesn’t apply only to canning applesauce.  I’ve found ways to streamline many different tasks.  Never settle for doing things the way others have always done them.  Aim for efficiency.

Life with rheumatoid arthritis can be tricky.  To make things easier, it’s a good idea sometimes to pause, analyze situations, know your limitations, accept help, develop efficient processes, and work smart.