Neurologist appointment

I had a follow-up appointment with my neurologist today.  One of those super-extra-long appointments that you’re not quite expecting.  My “migraine’s” had been getting weirder of late, so I had my headache chart all filled out and made a list of the extra special weirdnesses that had occurred recently.  She studied my chart, asked quite a few more questions, and told me I’d be having more tests run and be getting a couple new medications.

 

One of the tests (done today) was just to check that I hadn’t accidentally overdone it on Vitamin D.  I was way low previously, so at my last appointment she’d told me to up my dosage on supplements, which I did, following her advice about how much.  So we’re just checking on that.  The other test will be an EEG because she’s concerned that my weirder episodes aren’t migraines after all, that they might be seizures instead.  In the end it doesn’t really matter, as the meds she’s prescribing will take care of both of those things, but seizures require twice the dosage you take for migraines.  (The other medicine is one of those migraine stoppers you take once the migraine hits – I used to take those a lot.)

 

So…I came home and started looking things up on the internet about seizures.  It was quite interesting, but I’m not getting worked up about it, especially after all that testing last summer that ended up coming up with nothing new.  I’m going to try to chill out and not worry about it.  At this point, what can I do, right?

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)



Having RA & Being a Mom

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path.”

— Agatha Christie

I had all the symptoms of RA before my first pregnancy, but no one, including me knew that this was what was wrong with me.   Our first pregnancy was such a surprise, coming two years into our five year plan.  The pregnancy itself was really easy.  I apparently went into a complete remission for the duration of the pregnancy, which lasted well into the breastfeeding stage.  The first few months after he was born were really hard. I was breastfeeding & pumping all night and day because I had very little milk (due to a breast reduction I had in college that was supposed to relieve all this pain that I was in).  I thought it was just all that a first time mom went through because we were far from home and none of my friends had babies.  Now I know different.   I spent all my time resting and watching TV until my baby was nearly a year old.

My second baby was completely planned.  We got pregnant right on schedule and I was in remission, so I was feeling pretty good, and I’d made some mom friends by then, so I knew that my hard times with the first baby were some kind of fluke.  It wouldn’t happen again, right?  Wrong.  Oh so wrong.  This time there wasn’t just the extreme exhaustion, but crushing pain to go with it.  My arms and legs felt like there was fire right there inside all my joints, including places I didn’t even know could hurt.  I couldn’t even hold my darling little boy without tears running down my face because my arms hurt so bad. My oldest child would do everything he could to help me, but he was only two and a half, so that wasn’t as much as I needed.  I ran back to the doctor and asked to start all the testing again (we’d been through all the usual MRI’s and nerve conduction tests before because I had this weird numbness and tingling all over my body in places the doctors were mystified by because “nerves don’t work that way”).  I saw a few new doctors and they all said the same thing: “You’ve got rheumatoid arthritis.”

I started all the meds the rheumatologist put me on and within a few months I felt like a completely different person.  My old energy was back.  I could do things again, like clean my house and do my laundry without it taking me a month to finish a load.  I got my sparkle back and I was able to run with my two year old and throw that precious baby into the air to make him laugh.

Of course that couldn’t last.  The meds I was on stopped working after about a year.  I had to start over and find something new.  I had to stop playing and start making excuses to my kids.  “Mommy can’t push you on the swing right now, sweetie.  I’m too tired to even walk to the swing.”  We started reading more books and playing with more puzzles again.  Once we found another medication that worked, we were back to business for a while, but that one started turning me yellow and upsetting my stomach.  I didn’t realize how sick it was making me until a mix-up at the pharmacy replaced my normal meds with some stomach-soothing medication.  I took those for about a week before all the pain came back and I realized there was something wrong.  (The pharmacy was very apologetic.)  I started yet more new drugs and got back to playing with my kids again.

Then one day I noticed that something was off.  I was feeling ten times better than usual.  I checked the calendar.  And counted days.  I was pregnant again.  On birth control and on my RA meds.  This was not good.  I went to the OB and had all the usual tests and few extras besides.  The baby looked good.  We were cautiously enthusiastic.  I mean, I like babies and bigger kids are fun, too, but what if something was wrong with this one?  I tried not to infect my husband with my worries & doubts.  The baby, however, was great.  We found out it was yet another boy at our big ultrasound  and that he was healthy and right on track.  But I wasn’t doing well.  I was in a lot of pain and I got tired really easily and I was having contractions, not Braxton Hicks, but real contractions whenever I moved around too much (farther than just walking to the bathroom).  The doctor put me on bed rest from July onward.  I took maternity leave (I was working as nursery coordinator at my church – a “part time” job that really took more than 20 hours a week) and hid from the world for three months.  My due date was approaching and I was still having contractions, but the baby was not coming.  Again with the testing and we had to be induced because the baby seemed in trouble.  I tried to have an epidural, but the medicine did not work completely.  I felt all the pain of the birthing.  The baby was born with his umbilical cord wrapped around his neck.  God provided us with a miracle that day because he was not injured or deprived of oxygen while being born.

By this point I only had two kids at home, as my oldest had started full-day kindergarten by this time (that killed me – FULL DAY – they were babies, practically!).  My middle child was three and the sweetest, most helpful boy in the world.  I got back on my meds as quickly as I could, since the pain was excruciating, with me literally writhing on the floor.  You never ever want your children to see you like that.  Never. If there could be anything worse than all that pain, this was it.

I got on Enbrel at that point.  Oh, it was a lifesaver.  I became medically stable in remission.  I could play with the kids again, take care of the house, even take the kids all out all at once to the park or the science place or the zoo.  I could walk long distances and open jars myself instead of having them loosened for me.

The thing of it is, though, that I wasn’t really thinking about the side effects.  I got to feeling so good that I started getting sloppy.  I stopped carrying hand sanitizer everywhere.  I caught a cold, which turned into an infection.  I ended up with a bad case of pneumonia.  I was the worst mom in the world for those six weeks.  My kids would ask me to do something and I’d fall asleep before they finished the question.  I let the laundry pile up and the kids had to learn how to put clothes in the washing machine & add soap & start it so their daddy could put it into the dryer when he got home.  We ate junk food pretty continuously instead of planned meals or even simple sandwiches because I just couldn’t get up off the couch.  Eventually I got better and life went back to normal, but my lungs haven’t been the same since.  Every cold turns into a sinus infection and every cough gets into my chest and turns nasty.

My middle child started kindergarten, so now it’s just me and my youngest at home.  He’s three now and the most adventurous of all my children.  He likes to jump and climb and run and hike through the woods near the park.  He’s very energetic.  We do a lot of running around, not just literally, but with all our various activities.

This last year I noticed that my Enbrel wasn’t lasting as long in between shots.  Instead of wearing off the day before my next shot was due, it would start wearing off three days in.  I was spending four days a week in pain and exhausted, which wasn’t the plan.  We’d shoehorned so much into our lives by then: cub scouts, two churches worth of kids activities, sign language classes, MOPS, PTA, etc.  It wasn’t working.  I couldn’t be everywhere and do everything.  The house was the first to go, then the laundry.  The kids stopped asking friends home.  I stopped making snacks after school.  The kids started making their own lunches in the morning, even the littlest one pitched in.

So a few months ago I stopped the Enbrel and started the Simponi.  It was working for a couple months.  I was back to my regular activity levels and the kids were back to their regular, lazy lifestyles (hehehe – they do have regular chores like cleaning their rooms, practicing their piano, & putting out clothes each night, etc).   But then everyone got sick.  It started with a stomach virus, then moved on to a cold.  My youngest and I got sinus & ear infections on top of all that.  The infections have been gone a few weeks, but I’m back to having days of pain and tiredness, which makes days like today (when I have all three home, plus an extra kid to boot) a bit more difficult.  I started myself on a prednisone taper this morning (my doctor prescribed me some in advance about six months ago, in case I needed it), hoping that’ll work.

I love my kids.  I wouldn’t trade them for the world.  Motherhood has changed me; it has made me a better, more patient, more loving person.  And without it, I wouldn’t have my pain mantra “Just keep swimming.  Just keep swimming.  Just keep swimming, swimming, swimming.  What do we do?  We swim!”  Where would I be without that?  (“Drowned,” my children tell me.  “Sharks drown if they don’t keep moving.”  See the things I learn from them?  It’s fabulous.)

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?