Alternative therapies

For every failure, there’s an alternative course of action. You just have to find it. When you come to a roadblock, take a detour.
–Mary Kay Ash

I won’t deny that I’m a believer in modern medicine.  If there’s a drug out there that might make my pain lessen or stop the course of my disease, I’m going to give it a try, or at least ask my doctor why I haven’t had it yet.  I do a lot of research on things that might help before my appointments and I’ve learned to bring my sources with me when I go in (I’m currently seeing the PA, not the doctor, as I’m considered medically stable.  The PA is…sweet, but not as well-read as I’d like him to be.  He’s constantly amazed at my sources.  I’m glad to know that the doctor is usually out in the hallway & that the PA will run out and check on things with him frequently.)

That being said, I don’t think that modern Western medicine is the end-all-be-all of my arsenal.  I’ve wandered the gamut, trying all sorts of different things, some of which I no longer remember. Here are my experiences with them:

Massage:

By this point, with the exception of anyone that has gotten their massage license in the last year or so, I’ve had a massage with just about everyone in town that advertises in the phone book (and many that don’t).  I’ve had Swedish massage (light, circular motions, with scented oil which was terrific), which was nice, but not particularly helpful.  The Shiatsu massage (light finger pulses on certain meridians of the body) I tried was quite nice, but didn’t do as much as I’d hoped for.   I also had pregnancy massages (until I and my therapist were pregnant at the same time) and they were lovely in that “wow, a table with a cutout for my belly!” sort of way.  🙂 I had one session with a reflexologist (parts of your feet align with parts of your body), but other than my feet being happy at the end, I saw no improvement elsewhere.  I’ve had deep tissue massage (just what it sounds like), which was really quite painful during and for a couple days after, but after the pain wore off, seemed to have been more effective that the others. I’ve also had some sports type massage therapy that focused on certain areas, like helping with my knees or hands.  That was actually the best.  I had to get a prescription and see an occupational therapist for that series, but oh, it was helpful.  I’m not sure where yoga falls into my categories, but I do a little bit of that daily, some days regular and some days more modified, depending on the day and the pain and the poses.

Occupational therapy:

I am accident prone.  Really, really accident prone.  I like to blame it on the RA, but the truth is that I have always been the type to fall off stationary objects, tear a ligament just by walking,  and to sprain my thumb carrying in the groceries.  I’ve had a lot of occupational therapy.  I’ve done all the stretching, weird repetitive motions, bizarre things involving me, a giant ball, and a wall, things where I’m strapped into weird machines, electric stimulation, heated wheat kernals flowing around me.  All sorts of things.  Over and over.  I have a cupboard full of weird braces for very specific injuries.  (I recently had to move them all to a bigger cupboard.  My husband seemed amused.)

Chiropractors:

I saw a chiropractor/naturopath for about a year and he would recommend things.  He had these weird ways of telling me if my drugs were working for me, involving tapping me various places while holding my medicine in his other hand.  I have a pamphlet that tells me how each vertebrae that is out of alignment affects other random parts of the body, like my cheeks and gallbladder.  It’s interesting.  He put me on a sugar control diet, where I couldn’t eat any complex carbohydrates and certain vegetables were out as well.  That was interesting.  He also put me on barley grass (yech), something to boost my adrenal glands, acidopholous, and a plant based enzyme to aid in the digestion of protein (I have notes, can you tell?).  Anyway, I stopped going after a year because I had to go in 2-3 times a week and at $30 each treatment, plus supplements, it was too expensive to maintain.  (My insurance wouldn’t cover it then, but says they would now, but I’m no longer interested in frequent doctor visits.)

Supplements & teas & ointments:

There are a thousand and one kinds of supplements and teas and ointments out there.  I haven’t tried them all.  In fact, I tend to go into my health food store about once a month and just ask what’s new and what they’d recommend.  (They know me there; they all seem to go to my church, oddly enough) I don’t have notes on all I’ve tried, but here’s a sample of what didn’t work for me: glucosomine/chondroitin, green tea extract, ginger extract, colloidal silver, arnica, probiotics, borage oil, capsaicin cream (it burns, precious!), evening primrose oil, various essential oils blowing through a diffuser or heated over a tealight or rubbed on parts of me, and “arthritis” teas.

Things that I’ve kept in my daily plan: Omega -3 with DHA, honey lemon ginseng (green) tea, a chunk of crystalized ginger,  a daily multivitamin high in B12 & iron, at least 15 minutes outside every day (even when it’s  rainy) for Vitamin D, calcium, and folic acid.

Diet:

I got the book Eat Right For Your Type: Rheumatoid Arthritis and intended to implement that, but the foods I like best and are most likely to eat were all out (kidney beans and potatoes and bread all come to mind) and things I will not eat seemed to be best recommended (tomatoes, all kinds of peppers).  We also took a look at The Makers Diet, but it also went out the window as being too restrictive.  So I’ve been paying attention to the foods I eat and what makes me feel good and what doesn’t.  I kept a food diary for a while (I like sparkpeople.com for an online tracker of food, calories/fat/nutrition, and exercise) and noticed that I don’t do well with a lot of red meat in my diet (also, we don’t eat pork or shellfish, but that’s a religious consideration) or a lot of milk.  Cheese doesn’t bother me the same way that regular milk does, oddly, but I can’t drink a lot of milk or eat a lot of yogurt or my tummy will not love me.  We don’t actually, as it turns out, eat a whole lot of potatoes or kidney beans or bread.  When we eat bread or pasta, it’s the whole grain kind.  I put flaxseed in whatever I’m baking to replace some oil/butter & eggs. I love salad, so I eat a lot of that with walnuts (those were recommended in ERFYT:RA) and homemade whole wheat croutons and fat free Italian dressing (where I don’t mind the peppers).  We eat pretty healthy most days, with lots of fruit and veggies.

Things I’ll Try Next:

  • Biofeedback (I’m anxious a lot and I think it would be good to learn to relax at will)
  • acupressure (everyone says acupuncture is better, but I’m not happy about needles)



Ch-ch-ch-changes!

He who rejects change is the architect of decay.  The only human institution which rejects progress is the cemetery.

–Harold Wilson

My family frequently thinks I’m off my rocker.  They come home, look around, and find, not just a different look to the bedroom (or whatever), but to my whole outlook.  These things don’t always work out.  The changes don’t always stick (my bedroom has gone back and forth between two looks about twice a year every year for the last seven), but I can’t bear to be stuck in a rut, can’t bear to leave things alone when they could be so much better if we just tried something new.

In the past few months, I’ve noticed that regardless of my spending less time on the computer, I still was having this problem with one of my shoulders and my legs were always falling asleep after just a few minutes of sitting down at my computer desk.  I tried swapping chairs, but this only changed the amount of time it took until my legs fell asleep and did nothing for my shoulder.  I tried moving  the monitor up a little or down a little, but I still leaned my head on my left hand while I read stuff online.

Then there came the deluge of other people on my various friends lists and blogs that were starting to talk about RSI’s and CTS and spinal x-rays.  Nearly every one has found out that they just plain don’t need to be sitting in front of their computers all day long.  Unfortunately, most of them don’t have a choice in that or in changing their desk situations.

I, however, do.  So today I looked at my setup, read up a few places on how it could be more ergonomically better or better suited to my not gaining weight just sitting there, and I changed it in a few easy steps.  1) Turned my CD rack on its side so it could hold my monitor in the air (it did so in just the perfect place) 2) piled up my printer stand & my in/out box & a leftover shelf from the kids bookshelf to hold my keyboard & mouse (again, weirdly perfect) and 3) told myself that I could do anything I liked while standing there looking at stuff (run in place? dance a jig? walk? shift from foot to foot?)

Computer set up with CPU on floor, keyboard & mouse on top of printer stand & in/out tray & shelf, monitor on cd rack (turned on end) and bookshelves behind it all

My new computer desk set up

I’ve been here about an hour now.  It’s oddly freeing.  I’m not tripping over the cables trying to get into my chair.  My legs haven’t gone to sleep once.  My shoulders feel awesome and my neck doesn’t hurt either (I hadn’t realized it had been until it wasn’t).  I can quite easily just turn around and do crazy motions to Dora or shimmy with The Fresh Beat Band whenever called upon to do so.

I’ll give you and update in a few days on how it’s going, promise.  🙂

More about me…

…cause it’s all about me.  😉  Just kidding, but I thought you’d like to know a bit more about me than I put on my About Me page.

On the RA front, I was diagnosed with RA five years ago after dealing with various symptoms for the last 10 years (numbness & tingling?  check.  six trillion cases of bursitis, tendinitis, etc? check.  Jaw pain when chewing?  Check.  Mysterious chest pain neither heart related nor lung related? check.).  I’ve tried various combinations of hydroxychloroquine (Plaquenil), sulfasalazine (Azulfidine), methotextrate (Rheumatrex), etanercept (Enbrel), celecoxib (Celebrex), prednisone, and golimumab (Simponi).  I usually last about a year on one of the big drugs before having to add in something else and eventually giving up on it, as my system ends up getting immune to stuff fairly quickly.  I’m currently taking methotextrate, Celebrex, & Simponi (along with a daily woman’s multi-vitamin, omega-3 with DHA, fiber pills, and folic acid).  I spend about four months (not concurrently) of the year needing extra support, like wrist & finger & knee & ankle braces, etc, while the rest of the year I can get by with just the usual adjustments (ergonomic kitchen tools, extra stools throughout the house for legs & feet, pumped shampoos & soaps, special keyboard & mouse & pens, etc).

In regular life, I am technically called a stay at home mom (hereon referred to as SAHM).  That being said, I am a regular volunteer at my older children’s school, on the substitute list for my youngest child’s Mother’s Day Out (hereon referred to as MDO), on the steering team of my local Mothers of Preschoolers (hereon referred to as MOPS), a member of a monthly book club (no longer running it, yay!), and I help out with the kids Sabbath School every week or so (whenever they have it).  All of which is a long way of saying that I don’t actually get home a whole lot  unless we’re sick.

I have a husband, who’s an engineer in the petroleum industry, & three boy children.  The husband is awesome.  He’s like a superhero who takes care of a sick wife & the kids when the wife is sick & still manages to do great at work & try to save the environment in his spare time.  The kids are awesome, too.  The oldest is a third grader who’s obsessed with all things Star Wars and math/science.  The middle one is a kindergartener who loves everything and everyone and is constantly making presents for everybody.  The youngest is three and has hit that hysterically funny stage and will climb anything at all, no fear.

I’m also a scrapbooker, an avid reader, a jewelry designer (when I get commissions), and an aspiring novelist (these days I write YA Fantasy; I also write poetry & short fiction).  So, when I am home, I am busy there as well.  I don’t really have time to really think a whole lot about my RA.  Who really has time for a chronic disease, though?

Hello world!

For a very long time I’ve blogged about my regular daily life at another blog, but here I’m planning on writing about my life with rheumatoid arthritis.  I want to write more freely about the joys and pains and doctor’s visits and thoughts that go through my head about this crazy life I lead while dealing with a chronic illness.