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.

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Elevator Talk

Today’s prompt is about what you would tell someone in 30 seconds (or a minute, or two) about your blog.  Another prompt with a timer needed, how exciting!

 

30 seconds: My blog is about my health deficiencies, specifically about how I deal with being a chronically ill mother of three boys.

One minute: My blog is about my health: I have rheumatoid arthritis and migraines, but they aren’t exactly what you think.  One is an autoimmune condition and one is a neurological issue.  Mostly I talk about how I deal with being a chronically ill mother of three boys.

 

Two minutes: My blog deals with my life as the chronically ill mother of three boys.  I talk a lot about the misconceptions of my illnesses, how RA is not osteoarthritis and migraines aren’t just headaches.  I blog about family and the way I juggle health and wellness with the daily realities of being a mom to small, active people.  Mostly I just tell it like it is: sometimes messy, but always striving for normalcy and fun.

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?