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)



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It’s Wednesday, so naturally I flare

Next week there can’t be any crisis. My schedule is already full.

-Henry Kissinger

I don’t know about you, but I categorize events in my life this way: Important, Necessary, I’d like to go, and Enh.  Each has a few things permanently attached to it, but some things waver back and forth between categories.

Important includes things like our PTA Open House this week.  PTA stuff usually falls into the category of Necessary, but this event is the big opening of our new school.  Important also covers Family Dinners (with my in-laws) and certain doctor appointments (neurologist, rheumatologist).

Necessary covers things like our two monthly MOPS meetings and regular kid check-ups and weekly church.

I’d Like to Go is the stuff that usually falls by the wayside, sadly.  It’s the coffees, playdates, Ladies Club, trips to the gourmet food store, parties, etc. that I put on the calendar hopefully, but then have to cancel because I’m exhausted or in pain or have succumbed to yet another sinus infection.

Enh, of course, is that stuff that I don’t really want to do, don’t really need to do, but someone somewhere asked me and it’s important to them, so I’ll do it.  I generally end up doing these things rather than the I’d Like to Go things, somehow, usually because I’m propelled by the momentum of wanting to make someone else happy.

So this morning is MOPS and I’m in charge of hospitality, which involves setting things up, making things pretty, doing some MC’ing, and then tearing it all down again.  That is why MOPS falls in the Necessary category for this year.  I’ve missed the last two meetings due to various illnesses and today is my hospitality co-person to be sick, so of course I’ve flared and can barely walk.  Of course.  But I’m going and will sit and direct people, if necessary, perched on  a stool in the front of the room.  Woo hoo.

Pushing a car up a hill

Bless a thing and it will bless you. Curse it and it will curse you…If you bless a situation, it has no power to hurt you, and even if it is troublesome for a time, it will gradually fade out, if you sincerely bless it.
–Emmet Fox

I have this problem with superhero tendencies. I like to help people. I mean, reallyreally like to help people.

A friend calls & says they can’t make it somewhere because she’s lacking car seats? I’ll drive 40 minutes to her house, pick her & her kids up, drive back into town, do whatever they need to do, then take them back home.  Even though more than 30 minutes driving kills me.  Because she needs to go out so she won’t go crazy.  I’ve been there and I know what a blessing it is to have someone just take the time to be with me when I’m in that mood.

A teacher needs help organizing her new classroom in the new school building? I am there all day long: bending, carrying heavy things, kneeling. All those things that require pain therapy afterward.  I can be a blessing behind the scenes and also get a preview of the new school.

A committee (or two or three) needs someone to fill a hole in next years roster? I’m the secretary or the librarian or the historian or the community coach (all of those and more).  I answer the call, do the work, am happy to help.  I can be a blessing just by showing up.

Kids church school needs phone calls made and results tallied? Someone to sing with the kids? Costumes made at the last minute? That’s all stuff I do, too.  It’s not just that I’m the SAHM; they all know that I will do what it takes to make the program work.  We all do, but I have more time than the others because I do not work outside the home (hahaha).  I can bless the kids and at the same time show them how to be a blessing to others.

So when the car in front of me yesterday started spinning its wheels trying to get up and around the curved hill horseshoe where we pick up the kids every day, naturally I got out of my van to help. The woman inside was panicking and didn’t know what to do. I had her put the car in neutral while I pushed. Yes, there were other people in other cars who could have helped, but they weren’t getting out of their cars. Yes, we could have all backed up enough for her to go into neutral & back down the hill that way, but that would have required 40 cars to back up first and who would have been the one walking along asking all those cars to move (go ahead, you know the answer).

So yesterday I pushed a car up a hill. And today (and last night) I’m paying for it. But I’d do it again in a heartbeat. I like to help people now, while I’m still able. I don’t want to wait until the pain is gone (it’ll never be gone) to start. I don’t want to worry about the consequences and say no because there may be more pain afterward.  I want to do all that I can while I can. I want to be a blessing to others now.

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?