Just Arthritis – NOT

Before a diagnosis of RA, it’s common for friends to know you haven’t been feeling well.  If they’re good friends, after you’ve been to the doctor they inquire about the results.  For some inexplicable reason, when we say, “The doctor diagnosed rheumatoid arthritis,” listeners only hear four of those five words.  “Rheumatoid” seems to be inaudible when spoken.

Fortunately, we don’t have to remain stuck with the frustration that occurs when people hear “arthritis” without comprehending “rheumatoid” and respond, “Oh, I have that in my neck/knee/little finger.”  Usually, I don’t think my health is anyone’s business, but good friends are an exception.  If I know someone well enough to tell them that I have RA, then I know them well enough to explain why RA is not “just arthritis.”

When people respond as if I’m discussing osteoarthritis, I’ve had very good luck smiling and saying, “Oh, you’re thinking of OA.  There are nearly 100 different types of arthritis.  I have RA.”

It’s quite simple to quickly explain that OA is what people have when a joint wears out due to overuse, but RA is completely different.  RA occurs when the immune system goes postal and starts attacking multiple joints and organs, too.

I remember a few years ago my riding instructor shrugging off my stiffness, saying that we all feel stiff sometimes.  I waited a day, then sent email to explain the situation:

“Three years ago I was diagnosed with a disease that means my immune system is overactive.  It doesn’t distinguish between my body and foreign invaders.  The immune system is supposed to attack germs so that we don’t get sick.  My immune system does that, but it also attacks the synovial fluid surrounding my joints, the enthesis (where tendons attach), my skin, and pretty much anything else it feels like attacking without giving me any say in the matter…

While RA can cause OA, RA is not “just arthritis.”  There is a huge difference, and I’ve had tremendous response when giving people a brief explanation of the distinction between the two.

Painless Gardening

The person who originally landscaped my yard chose flowers and bushes based on what they looked like in the nursery, without any consideration given to how much work they take to maintain or what they contribute.  Before RA I hated weeding the garden; it’s worse now that my hands ache for days after pulling weeds. Low-maintenance/high-yield plants would be ideal.

For instance, my low-maintenance lavender hedge is green all year and bears beautiful flowers in the summer.  Weeds aren’t a problem because I mulch heavily.  Instead of hand-pruning all the flower stalks, I take the weed-eater to them – either in autumn or spring, depending on the weather and when I get around to it.  I know some gardeners are appalled that I take a weed-eater to my lavender, but it’s quick and easy, and my plants are flourishing.  The weed eater can be wrapped with foam to make gripping it easier.

Some plants do well with a groundcover beneath – sort of a living mulch to keep down the weeds.  I recently put in a hedge of evergreen huckleberries, and underplanted the bushes with lingonberries.  Everything is heavily mulched to keep in the moisture and keep down the weeds until the lingonberries spread.

Mulch is your friend.  It holds moisture in the ground, which means less work watering.  It inhibits weeds, which means less work weeding.  It’s free!  Grass clippings make great mulch (provided your grass hasn’t gone to seed).

My high-maintenance landscaping?  With the help of a few friends, I’ve ripped most of it out and am happily learning about useful plants to take their place. My plant wish-list has gotten much longer than the space I’m looking to fill or my budget will allow, which means I’ll put in only some things this year, then spend the summer preparing new beds for the future. In addition to my aforementioned huckleberries, I’ve planted blueberry bushes and peach trees, and have some artichokes in the greenhouse to be planted out in mid-May.

It’s fun changing the landscaping in my yard to plants that will be easier to maintain.  If you’re inclined to take on a similar project, a few things have been helpful.  GoogleMaps let me zoom in on my house, which allowed me to get a perfectly-to-scale picture.  I was able to print it and use the picture as my “sketch” for writing in measurements and deciding on locations for the plants I want to put in.  Another thing I discovered is that local nurseries charge less than mail-order nurseries and generally carry plants that will grow well in your area.  That said, mail-order nurseries are a great source for varieties not stocked by the local nursery.

More tips:

• Coat your hands with vaseline before donning your gardening gloves. They’ll be softer and easier to clean when you’re done.
• Invasive plants like mint can be contained in pots.
• If you want to grow herbs, make a plan as to where you’d like to grow them, but only add 2-3 per year so you get time to learn how to use them without being overwhelmed.
• Herbs make good landscaping plants, and can cut down on your grocery bill. Sage and thyme are evergreens that are very easy to grow.  Stick them in the ground and ignore them until you need a few leaves.
• Don’t be a slave to the zone maps.  Microclimates can let plants do well in areas that the experts say they shouldn’t.  For example, rosemary is labeled a tender evergreen, but mine is in outdoors in the ground and at six foot tall has survived weather down in the teens, simply by being in a slightly protected location.
• Moisture-loving plants will do better by a swimming pool than will plants that like well-drained soil.
• Lay a board on grass to kill it before establishing a new bed.  Keep it well-weeded for a year (or two) before putting in new plants.
• Raised beds can be built 2-3 feet tall, which makes it possible to sit in a chair while tending plants.
• Some of the garden planning software has a 30-day free trial period.  It’s nice to try before you buy (or determine you don’t want to buy).

Happy gardening!

What Can Rheumatologists Learn?

My youngest son’s best friend was diagnosed last week with type 1 diabetes.  I am amazed at the education and support the family is getting.  This won’t be a post about diabetes, though.  I’ve been thinking about the difference between how newly diagnosed diabetes patients are treated and how newly diagnosed RA patients are treated.

It’s pretty common for a primary care doctor to diagnose RA and write a referral to a rheumatologist.  Depending on the part of the country, there’s a 2-3 month wait until the rheumy has a new-patient appointment open (so much for early, aggressive treatment).  On the other hand, a kid diagnosed with diabetes is seen by a specialist within a few hours.  Obviously there’s a need for a new diabetic to be seen promptly, so doctors arrange their schedules accordingly.  Why can’t rheumatologists keep a few new-patient appointments open so that people can be seen and treated in a timely manner?

In theory, RA patients can benefit from physical therapists, occupational therapists, psychologists, podiatrists, and neurologists, but only learn about some of those options from online support groups, not from their doctors.  What a difference with diabetes!  At the hospital, a whole team of people introduced themselves, did some teaching, and explained how that particular specialty could be of assistance.  The family saw an endocrinologist, a psychologist, a diabetes educator, a nutritionist, and a slew of others, too.

The diabetes educators wanted to talk to our friends’ entire family, and gave them a notebook to store all their handouts.  Our friends were given a little book to use for looking up the carb count on just about any food they might think of, and taught how to use it.  They were taught about diabetes and what they need to do to control it, then given a terrific book explaining all that information again so that the teaching gets reinforced.  On the other hand, RA patients receive… nothing.  Families are told… nothing.

Disease control is another area where there’s a huge discrepancy.  Diabetes patients are under control when they leave the hospital.  RA patients take 3-12 months, if they’re lucky, to get under control.

After my son’s friend left the hospital, he had a follow-up appointment at the clinic two days later.  The appointment was 3 hours long and provided additional education.  After an RA patient finally gets in to see a rheumatologist, follow-up is a 20 minute appointment in three months.

How easy is it for RA patients to contact their doctor with a question?  The endocrinologist seeing my son’s friend provided his business card with clinic and cell number on it, and emphasized that there is 24 hour support available; they’re to call any time they have a question.  The doctor explained clearly that after hours, there are nurses who stay up all night just to answer phone calls, and it is okay to call in the middle of the night.  There’s no need to wait for the office to open; just call.

Now, I understand that DKA is an emergency in need of immediate treatment; RA isn’t an emergency.  That doesn’t mean that RA patients don’t need and want information and some support to figure out how to deal with our new normal.  There are medicines that can help, and it is unconscionable to hand RA patients a prescription for something that might help in 3-6 months and tell us we’ll just have to suffer in the meantime.

I suspect there’s a lot that rheumatologists could learn from pediatric endocrinologists.  I also suspect that, in the long run, insurance companies would save money by funding education and prompt treatment.  What’s it going to take to make it happen?