Making things work

‘Creativity, as has been said, consists largely of rearranging what we know in order to find out what we do not know. Hence, to think creatively, we must be able to look afresh at what we normally take for granted.’
— George Kneller

I spend an absurd amount of time each week trying to make things work for me.  I didn’t realize that until I started this blog.  I’m one of those people that likes small amounts of change (the kind that I can control), so I guess it didn’t really seem so much like me fixing things as much as it seemed like I was having fun switching things around.

This week I’m working on making laundry easier. Step one: my husband poured detergent into a smaller bottle for me from the giant warehouse bottle.  Two: I pulled the top all the way off the fabric softener box so I didn’t have to open & close it all the time.

Three: I found four casters that were supposed to be attached to a movable file cart and am installing them onto my hamper so I don’t have to pick it up all the time & can instead just slide it across the house (which I had been doing, but it doesn’t slide well enough on its own).

Four: I found a video online that shows how you can fold a shirt one-handed, which works pretty well as long as you don’t mind a messy fold (I would, but have realized that the kids carry stuff willy-nilly places, so things end up messy regardless).  I’m happy with it, though, as it saves my elbows some pain.

Step five is  figuring out what to do with my closet.  When we moved in to this house, the closet was just this big empty space with one bar going all the way across.  No shoe rack, no shelving, just that bar and the 12,000 screws they used to keep it up (honestly, it was so badly done that maybe we should have considered it a deal breaker).  Anyway, we put in a closet organizing system with upper & lower racks on one side, one upper rack & a lower shoe rack on the other, as well as some shelving in the middle.  Here’s the problem: I can’t reach the upper racks any more.  Sure, I could drag in a step stool and stand on that, but as we all know: I am accident prone.  So I’m going to have to buy lots more skirt hangers & move those down with my shirts.  I’m moving Nick’s pants hangers out towards the front where I can reach them better (they’re top rack, but the front half is so much easier to reach).  Since I only wear dresses on Sabbath (when Nick is home to help), they can stay there.  🙂

Six involves more money as well, since I want to try to implement something I saw on someone else’s blog.  (Unfortunately I don’t remember where or else I’d link to it) That mom has a separate laundry basket for each of her kids and a closet that she puts it all into.  She sorts directly from the dryer into these baskets and as part of each child’s chore list, they go get their laundry each day & hang & fold it all themselves.  I was thinking of getting smaller baskets than she did and maybe having Nick install some shelves in the laundry room to accommodate them (although I could do it, but then he wouldn’t get to use his saw). I know Greg is still too small to do that all himself (and Ben can’t really reach his hanging area yet either), but if they each just did their own folding & putting away that would save me a lot of time and energy.

Quickly decided, quickly changed?

“The risk of a wrong decision is preferable to the terror of indecision.”

–Maimonides

Last week while out with a friend, we decided to peruse the best thrift store in town.  We usually just go for the book section, but I was feeling in the mood to repaint something (I’m weird, I know), so I hit the tchotchke & furniture section.  There usually isn’t any furniture I’m even vaguely interested in, but this week there was a row of office desk chairs, the kind that go up & down in various ways, and they did, in fact, go up & down in their various ways, plus it rolls.  The price was right ($14), the chair was sturdy, and the sticker on the bottom (Property of the State Attorney General) was amusing enough that the chair went home with me.  I know, I know, I said that I loved my standing-up desk arrangement, but to be completely honest, I was starting to have a lot of ankle & foot pain all the time.  As soon as I saw those chairs, I knew it was just what I needed.  So we’re about a week in to the new new arrangement, with the monitor a still a little higher than it was, and with a stool under my feet so they don’t dangle, and everything is good.

In other news, the exercising is going well.  I’ve been up at the gym four times in 6 days -one day off for Sabbath, one day off because I had a meeting during the gyms childcare hours (plus I was having that day where the pain of just existing was making me cry).  Obviously the gym is not too scary.  I’m doing 20 minutes of stretching, a circuit around the weight machines (on their lightest settings – arms one day, legs the next, chest & abs another), and 15 minutes on the elliptical.  I’ve been befriended by the regulars that go during the hour or so that I’m there, people that are somewhere in between my parents age & my grandparents age.  One man made up a song about how pretty & nice I am (he does it for everyone, but it turned out that he used to work with my husband) and one lady told me that the best way to learn the machines is to follow the trainers around while they’re training someone else.  I got introduced around to the other 8-10am regulars.  There’s a real community feeling there that I haven’t experienced other places I’ve worked out in the past.

However, this  gym does have it’s down sides.  Yesterday I went over around 12:30 and found the gate locked.  I drove around to the other side and got in, but there were a bunch of people milling around by the door.  No one had come to open up yet, even though the gym was supposed to open at noon. A few people were unperturbed, as the girl that normally opens on Sunday usually arrives late.  Nevertheless, they started  calling around to their trainers, trying to get someone up to open the doors when we discovered that the childcare door was unlocked.  We obtained trainer permission to get started while someone was driving over, which turned out to be a good thing, as I was done with my workout by the time someone did get there (and then it was 3 people at once).    As I was leaving, the yoga instructor came over and hugged me, telling me that it’s always something or other going wrong, but here there were always a few extra as well, that’s why there’s such a low membership price.  *boggle*  I talked it over with the spouse, as he’s the one that goes up when the gym first opens all the rest of the days, and he says he’s had no such problems the other days, so I think we’ll keep on with this gym regardless, and just know that we should arrive later on Sunday, maybe go when there’s a class so we know the building will be open.

All that being said, I won’t be going back to the gym today.  My husband lost his card in the wash (we think), so he took mine this morning.  I’m going to try out the running portion of the Wii Fit (which I’ve never done before) and do my yoga video, actually paying attention to what the moves are called this time, and some strength training exercises using bands (that I had done before in therapy, but forgotten about until I found instructions for them online).  I’m trying to keep up and exercise somehow most days.  I’m giving myself the Sabbath off and one other day because I have meetings (but that day is also conveniently in the middle of the week), so I’ll be working out 5 days a week.  I hope.  If I can keep it up.  I’d really like to lose at least 30 pounds by the end of the year.  That’s a reasonable goal, right?

New & different all at the same time

“There’s only one corner of the universe you can be certain of improving, and that’s your own self.“

–Aldous Huxley

I have always wanted to be a writer.  As a young girl, I had notebook upon notebook where I’d write my little stories, letters, poems, and draw little (always bad) pictures to go with them.  I’ve nearly always kept a diary of some sort, be it on paper or online.  I write because it is who I am.  I am a writer.  To date I have written around 400 poems (not including anything written before age 14), 3 first drafts of novels, and a ton of unpaid articles for various local newsletters.  But I’m not published…and that’s kind of a goal of mine.  I’d like to finish something that took longer than a few hours to throw out there.

That being the case, I’m currently taking a two year novel writing course online. The whole thing goes completely backwards to how my mind works usually, but how my mind works usually hasn’t gotten me past a few bad first drafts, so I’m willing to try something new in hopes of something fabulous happening.  It’s been hard work, writing character descriptions and motivations and world building without the convenient flow of story carrying me onward, but I work at it a little at a time and try to wrap my mind around the homework assignments.

Also in the category of trying old things a new way: I’m joining a gym with the goal of losing weight and getting in better shape.  For years and years I’ve taken a daily (or as close to it as I can manage) walk and done some at home yoga or pilates videos, but I’m not getting anywhere with them.  The doctors all say that every pound of weight I lose will take four pounds of pressure off my knees.  I think my knees (and ankles & feet) would really like that.  However, I’m really phobic about going to a gym.  Not only do I have all these health issues, but the pretty people in the gym terrify me, as do all those shiny reflective surfaces.  But the way things are going right now, I haven’t lost any weight at all; in fact, I seem to keep gaining it.  So I’m on a week’s free pass at a local gym starting today.  I’ll be going to the least scary gym I can find (several people have called and told me it’s a fine gym, but wouldn’t I rather go to this shiny place with 9 billion classes?  Umm…no) and taking a yoga class with real live people and using machines that aren’t my Wii balance board to work out on (probably just the elliptical, actually, but that’s more than I’m doing right now).  I know it’s not going to be easy and there’ll definitely be days that I can’t make it to actually work out, but at the very least, I’d like to be able to show up there & give it a try.  If I can’t work out, well, there’s always the sauna, right?

The weird things we all do

I’m the one that has to die when it’s time for me to die, so let me live my life, the way I want to.

–Jimi Hendrix

Last night I sat at my computer typing away at an email, completely unperturbed by the fact that I had on fuzzy black/pink/red striped gloves (with aspercreme on underneath, naturally).  My family thought a) that it was totally funny, and b) something I should post on Twitter.  Being me, that is exactly what I did.

This morning I got up and checked facebook (twitter crossposts there) and was surprised to see a ton of comments on that post.  I “came out” this year with my RA in public spaces (my close friends & blog readers knew about it, but my real life people, not so much).  A few people in my town like to ask questions, so I fielded ones like “what is aspercreme?” and “why the gloves?” (I have small children and they don’t need aspirin in their systems).  But the one that really got to me was “Why are you even typing if you hurt so bad?”

I didn’t answer that one.  Not there.  There are things that would take a lifetime to explain and this might be one of them.  I don’t know.  I thought I’d give it a shot here, though.

I type when I hurt so bad that tears leak out of my eyes and I’m so cranky that I can’t speak to my loved ones because it is something that I can control.  When words flow out of me like this, I am not the person limping from room to room or the person cringing because someone touched her elbow, I am just me and these are the thoughts coming out, not the pain running through me.  I type because someone asked for something from me that I could give them in a way that causes me the least amount of pain.  Words can pass between us without the pain getting in the way.

I can’t quite get this out clearly.  Yes, the typing, the actual process of holding my arms out like this with my elbows bent like this and my shoulders held just so and my feet flat on the ground and my ankles bent just so and my hips holding me upright just the right amount and my wrists moving back and forth and fingers moving to and fro, yes, that is what hurts.  But this, this communicating, that is what I live for and what I won’t give up no matter how it hurts.

We all go out and do things that aren’t comfortable for us.  One of my friends in high school didn’t like walking anywhere alone, but she manages it every day.  My mom doesn’t like making phone calls, but she manages to talk to the people who work on her house and her yard when she needs them to come out.  My middle son doesn’t like leaving me every morning, but he manages to go in to school and have a good day.  You probably have something you don’t feel comfortable doing, but you do it anyway.  Well, so do I.

We weren’t put here on earth to be comfortable and most of us aren’t in some way or other.  We all have things we’d like to have different or do differently.  Well, I can choose to sit at home and moan about my pain or I can do something else.  I’m always going to choose to do something else, even if I have to do it in a different way than I’d prefer, like wearing gloves while typing or wearing sneakers when I’d rather be barefoot (oh how I love being barefoot!) or wrapping my ankles so I can take a walk every morning or taking a huge number or drugs to stay upright rather than staying all natural.  Sometimes we just do what we have to do and get on with it.

I’ll be the one over here typing with her gloves on.

In pain…

…so no new posts right now.  Typing not only hurts, but I can’t make my brain move my fingers in the right directions at the right times.  Will post when the world makes sense again.

Avoiding kid related pain

The art of life is the art of avoiding pain; and he is the best pilot, who steers clearest of the rocks and shoals with which it is beset.

–Thomas Jefferson

This week has been Spring Break from school and at our house that means that I go from dealing with one child all day long to dealing with three.  Don’t get me wrong: I love my kids and it’s great to spend time with them.  That being said, the little one and I have our schedules and ways of doing things and having three home instead of one changes that.  Plus the weather is getting warmer and we can be out in it more.  I like to think of this week as a sample of what summer is going to bring.

Here’s what I learned this week: 1) No one is really interested in Rest Time.  At almost 9, 6, and 3, they feel they are far too big to have something called rest time.   2) For every super fun morning experience I plan for them, I need to plan an equally engaging afternoon plan or it all devolves into massive amounts of screen time (computer, Wii, iPhone, TV).  3) The more people I involve in these plans, the better.

So how do I avoid spending each and every afternoon totally wiped out (as I’ve done this week)?  That’s where all the planning comes in.  I know, it’s only March, but around here if you don’t have a plan set in stone by May 1st, you may as well kiss summer fun goodbye.

So yesterday I spent part of my dead-on-the-couch time calling around all the swim places in town to see about pricing.  Our one and only non-membership-required pool is a) on the bad side of town and b) overcrowded beyond words.  I can’t handle that.  I’m willing to give up my one day a week of MDO in the summer to have a summer pool membership.  Two of my three kids swim well and the third one does okay as long as he has floaties and a mommy who watches (and with my anxiety issues, I watch like a hawk).  The second part of this plan involves my mom friends that also have pool memberships.  I found out this week that it is far less exhausting to take three kids to the zoo or the science place or the park if I have other moms to help supervise (I knew this, really I did, but it’s so easy to forget after winter & all that sick time).  So we’re going to really make plans this summer to make sure that I’m not at the pool on my own.

Another part of my plan involves VBS (Vacation Bible School) and camps and family vacation time.  Our church doesn’t do VBS, but we live in a town where you can’t go a block without seeing a church, so I know that there are plenty.  The kids are always being asked by some friend or other to come to VBS, so this summer we’re going to take some of them up on it.    One kid is going away to church camp and one kid is going to a cub scout day camp (where I have to follow him around the entire week, but they have childcare for my other kid).  My husband is taking a week of his vacation time over the summer so we can do a family trip around Texas, exploring places we’ve never take the kids before.

The last part of my plan involves something I do every summer, which I like to call Theme Days.  I do a lot of preparation for this, but the gist of it is that for each non-camp, non-swim lesson, non-VBS, non-vacation day of summer, I plan a craft, two snacks, two activities, a few worksheets, a few interesting books, and some songs all according to a theme.  Themes that were big hits in past summers: volcano day, National Tailor’s Day, Medieval Day, etc.  You can look up summer months on my regular blog and see what all we do.  We usually discuss the day over breakfast, spend the first few hours of the day outside, come inside & do worksheets & music & reading while it’s too hot out, then go back out for another activity & some art in the late afternoon.  Last year I took a lot of ideas out my oldest sons Cub Scout book of Academics & Sports activities, so we could kill two birds with one stone.  We’ll probably do that again this year, as my middle child will be starting scouts over the summer.  The important part here is coming inside when it gets too hot.  I am really susceptible to heat exhaustion and my meds say to avoid sunlight, so we do stuff inside for a while so I don’t pass out.  These days are also really fun if you invite people over to share in them.  The other moms appreciate my planning and the kids get more excited when they can share happy fun times with their friends.

All of that is well and good and makes the summer go, but I think there’s one more thing to be aware of: not feeling guilty when you have to ditch your plans and just let the kids have a screen-filled day.    Sometimes this happens.  Sometimes it even happens twice in one week (but that’s where our love of Netflix Instant Streaming comes in).  A little TV or time planning their own games is not going to kill them.  In fact, my kids like planning their own games.  I let them browse the web, find a new-to-them game, and away they go (earlier this week it was four square, which I played nearly daily for 10 years, but never taught my kids to play).

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.)

Computer update

For everything you have missed, you have gained something else, and for everything you gain, you lose something else.
-Ralph Waldo Emerson

Earlier this week I changed my computer set-up and I promised you all an update on it: we still like it.

However, there have been a few issues with standing up computing: 1) The kids cannot use the computer without express permission and only under parental observation.  2) My husband has realized that he missed quite a bit of his favorite TV show in the last few months and he’s trying to catch up by watching them on the computer and standing in one place for an hour at a time is not that comfortable. 3) I hadn’t realized how much I relied on my computer time as “rest” time during the day. 4) Unless I wear my tennis shoes while at the computer, my feet & legs really start hurting.

Our solutions so far have been: 1) to move the kitchen stool over for the kids to sit on, although that doesn’t help as much with the screen being up too high.  Don’t know what to do about that just yet.  2) Husband also perched on something to watch his shows.  3) I’ve spent less time on the computer and instead spend my rest time reading (which is good because my book club partner needs her book back on Saturday) or playing the piano (which makes me happy!). 4) I am going out on Sunday to get better every-day-shoes.

That all being said, I have noticed an improvement in my posture in the last week.  I’ve spent less time frustrated because of tripping over the chair/cords/etc.  I’m more intentional about what I do on the internet and think more about what I’m going to post on my blogs before I get to the computer and start typing.

All in all, this has been a successful change.  🙂

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.