Stress+RA=Swelling

I subbed up at the school yesterday as the librarian.  Some days are quite quiet up there, but Tuesday’s are her big day: 6 classes back to back with a little break to eat & shelve books in the middle.  The regular teachers like to use library time as a place to park the kids while they go off and do other things, so it’s all up to the librarian to get the kids through a lesson and finding books and checking out and then time in the computer lab.  (Some teachers do stay close by, but busy.  One actually stayed and helped, which I LOVE her for.)  By the time the third period had gone through my hands were swollen up big enough that the bigger sized rings that I was wearing were too small for me.  (I need to remember to get them out of my wallet still.)

 

Anyhow, my day wasn’t over then.  Middle boy had dance class, then both the older boys had piano lessons, then we came home and did all the days chores (we’re trying out choremonster.com, by the way.  It’s a bit of a beast to set up, but the kids are LOVING it so far), the dishwasher overflowed all over the kitchen so we had to clean up that, and my husband finally came home from the meeting at the middle school that I was supposed to attend (but was too tired to).  We ate leftovers for dinner.  Yeah.

 

And today we do it all over again!  Though with less after school craziness.  So glad today is Wednesday.

Infusion day

Yay! I can tell when I’m due for an infusion now. My shoulder starts acting up. It’s like clockwork.

Today the infusion room was packed. All four chairs had people in them and one person even had a visitor with them (watching TV loudly on his phone). I pulled out some cards to write, glad that this time the nurse was able to get my left arm to behave so I could get things done. One by one, the people around me fell asleep… And they all snored! It was quite funny actually! The guy on the phone gave I on hearing his phone over it all and left. :).

I spent the rest of the day resting. Tomorrow I work at the school. Whee!!

Nothing new

Writing is a struggle against silence.

–Carlos Fuentes

Just checking in, keeping up the writing thing, cause that’s part of my ongoing goals this year.  I had a writing retreat with a longtime writing friend/partner in crime this weekend.  We traveled to an undisclosed location and holed up in a tiny studio apartment and wrote, read books on writing, and shared notes on writing related things.  Now we’re trading our WIPs (works in progress- she has one to trade, I’m still trying to get there) for reading and helping along.  🙂  It was a really good weekend.  I’m feeling all refreshed and writerly again.  I organized my writing folder, downloaded the latest version of Scrivener (writing software that my copy of was an old bug-filled beta), and wrote more yesterday.

The downside of all this travel and writing is that I’ve remembered now part of the reason I stopped in the first place: the pain.  Oh the pain.  Wrists, fingers, elbows, shoulders, back.  I’d forgotten how bad it can get.  So now I’m looking into some other ways to get my writing in.  I’ve got a memo program on my iPhone that will translate my words to text; which it’s doing better than I thought it might.  It just doesn’t have a Save function, so then I’ve got to copy and paste by hand.  I’ve just spent thirty minutes with the Speech Recognition software on my computer.  The tutorial made it seem easy, but the actuality is not so easy.  It doesn’t like blogging. 😦  Maybe I’ll just have to copy and paste a lot.  😉

I’ll let you know how it continues to go.

Physicals…

Physicals, or check-ups as I like to call them, are so delightful.  This time around they had a totally new computer system that wanted to know my height and blood oxygen levels and whether I was left or right handed.  Woo hoo.  Apparently I’m an inch taller than I think I am.  I pointed out that the last time I’d had my height measured I’d been 18 and barefoot, but the nurse did not care.  5 foot 5 is my new height. It’s in the computer so it’s official. Well, okay, then.

 

Other new things:

– More blood work.  Fasting.  Tomorrow.  Oh yay.

– I need to lose at least 20 pounds.  Me: “Yes, I know, but it’s very hard to lose weight when you spend quite a lot of time not being in any condition to exercise properly.  Isn’t there anything else we could try?” Doctor: “Since you have a heart condition….”  Me: “Wait, what?!”

-I have a heart condition.  Undescribed.  Awaiting some test results.  No big deal.  Umm….

– (back to the weight loss woes) “… you can’t have drugs to help that along.”  I can, and should: walk, do low-impact exercise, swim, etc, and eat healthy.  Which I’m already doing, but I’ll try harder.  Maybe I’ll just travel everywhere with whole grain bread and tea and carrots.  Why not?

– The doctor checked EVERYTHING, even my swallowing and listening to my throat at rest.  I have no idea what that was about; he’s never done it before and frankly at this point I couldn’t handle anything else.

– My left side is way less limber than my right side.  (Wherein I realized that my rheumatologist never does range of motion checks any more.  Hmm.)  Arm, leg, protesting.  Which is weird because it’s my less grouchy side, at least the side that generally hurts less.

 

I think that’s it.  More than enough.

 

I hate flares

Yesterday my left leg started hurting, terrible jabbing pains, up and down, first here at my hip, then at my knee, my ankle, and up again. It was almost like extended muscle spasms. I could barely walk, even just to go to the bathroom. Then whatever it was attacked my left arm, followed by my right. It was awful. I got up this morning to right leg pain and decided to go ahead with my prednisone taper. Made it through the day all right, but am not feeling well at all. 😦

Open a book…

…and write about the word or passage you open to for 15 minutes.  Ahh, freewriting, how I love thee. This is supposed to be totally unedited: expect a lot of tangents, please.

 

My computer is set up under a bookshelf, with two more off to my left close by.  There’s another two here in the room, though not close by, and one in each bedroom.  Finding a book is not going to be the problem: choosing a book will be.  I’ve decided to do the old “grab one without looking” and get one from above my head.  Here it is: “All in My Head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening headache.”   Oh how funny: It’s totally mishelved.  Health books normally live in my bedroom.  That shelf should have been a combination of writing, parenting, and books of sci-fi anthologies.  The “doesn’t fit on its proper shelf” shelf, in other words.

 

Now for the passage: it’s page 142 and she’s gone to the doctor with this unrelenting headache and this particular one has prescribed biofeedback.  She’s making cracks about how if she had something like diabetes she could sue for malpractice if she were told to just wish her illness away, but with a headache they (the doctors) thought this was perfectly reasonable.

 

I like this segment.  I feel this way a lot about the RA, in fact.  A lot of the time the doctor just says “well, you need to be less stressed.  rest more.  don’t try to do too much.”  How does that help me in any way?  Is he going to come watch my kids and clean up my house and keep up with my life for me while I’m resting?  The doctor will say “I don’t know why the hip bursitis won’t go away” and well, neither do I!  It just doesn’t.  I’ve tried PT, I’ve tried injections, I’ve tried lying down more, moving around more, meditating on the pain leaving my hip more.  Does any of it work?  Not particularly.  No.

Here’s the thing: I know I have things wrong with me, I know they are not just “all in my head.” But we are so often treated that way when we have RA.  I can’t help it if my hand flared up last week and it hurt like hell for two days just because I took a dish out of the dishwasher wrong, but then on the third day the swelling went down and it felt normal again.  I wasn’t making it up when I said that it hurt.  But with RA sometimes things do hurt just like that and then go away just as fast.  Sometimes they don’t.  My knee, for instance.  I feel down on it weirdly three years ago and it has never been the same.  I still have that area of complete numbness on one side where I know something went dreadfully wrong.  The whole leg moves differently now.  I get bursitis in the hip on that side now.  But has anyone ever scanned it to see if there’s something going on in there?  Nope.  “It healed nicely” the doctor said of the wound on top of the skin and left it at that.

 

Wow, fifteen minutes went by fast!  I had more to say, but the timer has gone off and my shoulder is telling me that typing time is over, too, so I suppose I must go.  Be good! 🙂 See you tomorrow!

 

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

My new favorite place

Life is like a blanket too short.  You pull it up and your toes rebel, you yank it down and shivers meander about your shoulder; but cheerful folks manage to draw their knees up and pass a very comfortable night.  ~Marion Howard

I did something I promised I wouldn’t do earlier this week: overworked myself into a flare.  See, I’ve been living very carefully these last couple months.  I’ve slept a bit more each night, eaten a little better, rested for an hour or more each afternoon, made sure not to schedule myself into oblivion most weeks.  I knew that I was living on this borrowed time, this near-remission that I was experiencing was like magic, and like magic it needed to be believed in just a bit harder to be achieved.  And this week I thought, enh, I feel great, this is LIFE, this isn’t magic, I can go back to regular things, do what I like.  So I moved some furniture and a room full of stuff got shifted around and around.  I ate a few too many things, didn’t spent my afternoons at rest, skipped out on a few of my glasses of water each day, ran a dozen errands one day.  Then, BAM, it hit.  Not just a little hit like I’d been having, just a few fingers or a shoulder that twinged a bit, an ankle here for a couple hours or a hip there as I did the dishes.  All of a sudden I had a spine that wouldn’t bend.

So I spent all day in a chair in my living room, feet up, e-book queued up, kid bringing me whatever he could get me.  It was nice for the first hour or so after all the pain relievers kicked in and the heating pad did its magic.  But as soon as I got up (a bathroom visit), I realized that this wasn’t my usual kind of pain.  This was more serious.  I hobbled back to my chair, got the remote controls to the TV out, and prepared to let the kid watch TV for an hour or more….

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.)

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.