SuperMom, SuperFriend, SuperTired.

*Yes, I’m ignoring the prompt today.  I don’t like to clutter up my music with thoughts of RA, thanks.*

 

A couple weeks ago I realized that a friend I rarely see these days was posting a lot about not having time to finish her work projects and that her son was really lonely.  I made a few small overatures of “Hey, send that kid my way” by text message, but heard nothing back.  Then a couple days ago we ran into her son at the bagel place and he attacked hugged my son and dragged him all over the place clinging to him.  His mom wasn’t with him, but his grandmother relayed the story and later I got a FB message asking if I was at all interested in babysitting.  So yesterday I took my big kids to school & headed over to her house to see about making arrangements.

 

It boiled down to me taking her son about four hours a day, twice a week, on our non-MDO days.  He and my son get along famously, so it’s not much more than a couple overly-long playdates a week.  In exchange I get nifty art for my wall and art lessons for my boys once the holidays are over.  I think it’s an awesome trade, so I said yes.

 

As we were talking, I realized that she wasn’t looking at me.  I thought she was just doodling, but she was, in fact, trying to work and visit all at once.  So I scooped up the boys and went home.  We played for a couple hours and had lunch and the spare boy (A.) was about to be picked up when I got a call from another friend.  She was having a terrible day and needed somewhere to park her eldest while the younger two slept and she got something done.  Since the morning had gone so well (I got my kitchen 100% clean while the kids had argument-free playtime), I said “sure.”

 

So the two moms show up in my driveway at the same time (which wasn’t part of the plan).  The spare boy was devastated to have to go home now that there was a new kid to play with.  He didn’t tantrum, he just quietly balled up and cried, so I caved and kept both kids for the afternoon.  Play with three kids was different than with two.  Greg and K.  would have played house and grocery store and restaurant.  With A. there, they had weird competitions and poured water all over the construction kit.  It was…not optimal.  K. came inside for “alone time” for a while and I built her a curtain for the reading nook (an adult can see straight in from above, but kid sized people cannot – perfect).  The boys were sad that they’d made her need alone time and made rules for further play, such as “no competitions, no slamming doors, K. gets alone time because she’s a girl, and no water in the bedroom because we’ll put it places it doesn’t belong.”  Greg picked flowers from the backyard and gave them to her.  Things went well after that.  🙂  I got a couple loads of laundry done before snacktime and then we got everyone off to their own houses.

 

 

Of course the day didn’t end there.  After that I had to take all of my kids to the store to buy supplies for the box car derby.  Then come home and make dinner (it was my night).  Then drive kids to/from scouts.  And then after all that, time to work on PTA stuff.

 

What a day.  It was exhausting.  The sad thing is, other than having two extra (and super nice) kids, it wasn’t that different from a regular day.

 

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

 

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.

Another day, another post

Here’s where I admit defeat: I am not loving all the prompts.  I feel bad about that, but I don’t have a lot to say that’s on topic and other things I’d like to say instead most days.  Today’s prompt wanted me to talk about what’s right and good about the health communities I’m part of.  Well, here’s all I have to say about that: they are full of good & supportive people and I don’t get to spend as much time around them as I’d like because I have a full time job keeping up with the munchkins & their activities.

 

Speaking of the munchkins, I’ve been working overtime this week preparing for my son’s birthday party.  We sent out invitations last week shaped & photoshopped to look like Pokemon cards.  I’m thinking they’ve mostly gone astray, as I’ve only heard back from the two parents that I personally talked to about the party.  That being said, we invited 16, are prepared for about 12, and will probably have just 6 kids.  You know how it goes.  I’ve spent hours online researching Pokemon (which my kid loves & I know oddly little about outside of the fact that they are playing cards).  I’ve come up with games that can be played both inside or out (there’s rain in the forecast, but we rarely get it when they say we will) and this afternoon I’ll go buy supplies for them.  We’ve also got well child check-ups this morning, playgroup after at the park, and a new TV coming in this afternoon, so it’s shaping up to be a super busy day.  Hope I have enough spoons. Smile

 

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

happy day

I’m forgoing the prompt from wego today.  It’s my middle son’s 8th birthday today.  I love him so much!  We had special cranberry orange muffins (from a package, not homemade, that was part of the request) for breakfast and played Quirkle (his new favorite game).  I will be bringing his class homemade white cupcakes with colored frosting & mini m&m’s on top after lunch.  After school I’d planned on having one of his friends over for a while (but haven’t heard back from the mom yet).  Then we’ll have pizza for dinner and his present from grandma after.

 

This sweet, sweet boy has never known a mom without RA.  I’ve not been able to do all the active things with him that I’ve wanted to.  Sometimes he’s had to forgo fun things because I just can’t do them.  He’s such a good boy, though.  I’m very super extra blessed to have him (and his brothers, of course) in my life.

 

Happy October!

I can’t believe it’s already October!

Once the staph infection was gone, I went back to my primary care doctor for a physical.  He said I was the healthiest he’d seen me in ages and that we should go ahead and do those vaccinations he’d been holding off on for a long while.  So I got a flu shot and a TDAP.  I immediately started feeling weak and dizzy, but I HATE shots, so I didn’t say much.  I told the lady doing my blood draw that I felt weird and she let me sit for a while first and eventually I was good to go.  Three days went by and while my flu shot side (the nurse labeled them) stayed small and red, the TDAP side swelled and swelled and was very hot.  I had a fever the first couple days, then it left and a stiff neck set in.  I called my doctor’s office a couple times but my doctor was out of the office & there was a holiday weekend involved, so I finally saw the doctor about a week later.  He said I’d had a really bad reaction to the vaccination and put me on another round of steroids.  (Even now, a month later, I can still feel a marble sized lump under my skin on that site.)

Since I’m mostly doing all right lately, I’ve started a new food tracking program.  I’m using LoseIt.com to track my food and exercise (I used to use SparkPeople, but it felt so competitive and just like too much to do).  I’ve discovered a few things the past couple weeks (I tracked for a week without changing anything first, just to see what that looked like.): 1) After entering my age/weight/activity level and letting the program run its calculations, I found out that I apparently don’t eat enough, so my body’s been in starvation mode and b) once I started eating as many calories as I’m supposed to have, I started losing weight.  So far just a week of eating more (and making sure that that “more” was a healthy more, not a candy bar or soda more) and I’m down 1.7 pounds.  No extra exercise (although it counts weird things like housecleaning and music making as exercise) involved.  We’re going on vacation this next week, so eating well will be trickier, but I’ll also be moving around more, so that’ll even some things up.  Still, I’ll be trying checking out menus/nutritional values and trying to keep as close to on-track as one can while on vacation.

How’s the RA?  It’s coming and going.  When I’m being good and resting like I ought to it mostly stays pretty quiet.  When I’m running around like a crazy person (the last couple weeks: friends came to dinner, we went out to dinner, my kids birthday party, book fair at school, field trip for MDO, PTA movie night, playing a duet at church, family dinner night out), then it creeps up on me and unleashes its wrath: hot swollen ankles, knees, and hands; a painful back, shoulders, and elbows.  I’m hoping that this upcoming vacation week allows me to slow down a little and catch my breath and rest my limbs.  🙂

I know, I know….

….you’d nearly forgotten I blogged here.  I had as well.  I keep meaning to blog more, but mostly kept coming up with the same non-answers and/or depressing news, so I stopped blogging entirely.

I have been having the bad days again, though.  I put myself on a 10 day steroid taper, as per the doctors instructions for Times of Necessity.  The steroids made me glad to be alive again (and hungry as all get out.  I ate and ate and ate.  One day I got sick.  It was so not a good day, but it reminded me to be more careful.  Learning is always good, right?).

School started for the kids back in mid-August, which meant I did lots of shopping and resting and shopping some more.  Then PTA stuff started back up.  I’m homeroom parent coordinator, so I’ve spent lots of time making a database of which parent is willing to help with which activity for which grade (as well as all the contact info, which flummoxes me a bit because the school already has most of that info in a database somewhere; why must I copy it?).  I started volunteering a couple hours a week in the school library helping check in and out while the librarian teaches classes.  I also help out with shelving (I bring in my own kneeling pad & am allowed to scoot around in the wheeled chair when my knees are bad) and in the computer lab.  It’s more fun and life-affirming than you can imagine.  My husband thought it might wear me out, but it actually has been energizing me because it gives me a couple hours out of my own head.  Plus I get to talk to kids about books!  What could be better?!

Other things: I seem to be done with the sinus infections for now, despite living in the Land O’ Big Fires (seriously, if you looked at a map of Texas there’s a ring of fire around my town) and woah-allergies.  I do have a staph infection (probably mrsi, pending lab tests, according to Dr. H.) of a wound that I thought was just a blemish.  I got it the first day I used the machines at a new gym.  (They now have bleach wipes available)  More antibiotics, yay.  Just what every girl wants, right?  The good news is that the antibiotics will also save me from the pneumonia that the doctor thought it likely I might get due to the stress of the lungs from all the fires (apparently I was on The List of the Immune-deficient.  Also so much yay.)  Bad news: more yogurt eating.  I used to LOVE yogurt.  Now it’s like a more flavorful medicine.  I hate that “they’ve” made something as yummy as yogurt seem bad.  *sigh*

Other things: my insurance/pharmacy plan seems not to love my blood pressure medicine, so I’ve spent a vast amount of time on the website/and/or/phone trying to figure that out.  If I jump through all the right hoops in all the right order I can get it practically free (<4/month), but no one wants to tell you that up front.  You have to spend gobs of money and time on the phone (we don’t have a landline any more so any time on the phone=money spent) to find out anything and ususally half that time is spent on a call system that says “I’m sorry, I didn’t quite catch that.  What did you mean to say?”  which I find infuriating.  If they’d just use a person instead of a computer, they’d understand that I wanted to talk to a person in ther first place.

More other things: the temperature has finally dropped from a daily high of 105 to something more like 95. Oh what a difference 10 degrees makes in a day.  In the mornings I feel so much like a regular person.  The van is easy to drive.  My shoulders are down.  My body is stiff, but not achy.  It is such a goodness.  In the afternoon I no longer feel like deadness personified, but merely hot & sweaty.  I can make the kids a snack myself, rather than telll them what to get out.  Love, love, love it!  I cannot even express how much better it feels.  Just a thousand, million times better on the good days.

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….

Not quite nothing new

Not a whole lot has been going on.  I put on hold the idea of starting an autoimmune group in my area (which already has a church-related one the next town over, it turns out), mostly because the others that were interested in it could not meet during the day and I no longer feel comfortable driving much at night.  (You have no idea how hard it was to type that sentence.  So very hard to admit.)  There were only a few interested in it in any case and I’ve been sick, sick, sick all this time, so I couldn’t have done much even if I’d felt inspired.  Which I haven’t.  I’ve been cranky and sick and not interested in anything at all, even reading, really.

We’ve had a ridiculously busy month.  The big kids started piano lessons, which they love, and I’ve been noodling along with them (their songs are all one handed right now, with little bits at the bottom for the teacher to play along with them.  All flats, natually.  Took a while for my brain to wrap around that.)  The last week in October we had something going on literally every single day.  Outings, school stuff, scout stuff, game nights, etc. I love my kids, but am so very tired.

 

My middle child turns 7 next week and I go back to the rheumatologist that same day.  I haven’t had my Humira in ages due to The Sick and I need to talk to him about that.  Hoping that day turns out really great for all of us.  🙂

Our “official” start of summer

Last week I followed y’all’s advice, gave in, and let my husband help me take the kids down to Houston for their summer camp.  Such a wise decision.  We made it down and back safely and I got to “rest” in the passenger seat the whole way.

The rest of the week was full of cub scout day camp fun.  It was my middle son’s first year at camp, which meant that he was required to have an adult chaperon with him all week – that would be me.  I went up the first day and after standing around waiting for 30 minutes, realized that a) our den leader (for camp) had failed to call any of us, not just our family, and b) our den leader was one of the seven who called the camp director the day before and said they weren’t coming.  Being the logical sort, I told them that since I was already there all week and would be following this little group around, I may as well be their den leader.  So I did.  Camp lasts from 8:30am until 2:30pm every day for five days.  It’s outdoor.  I live in Texas – that means highs in the high 90’s, low-100’s.  Fortunately God had a plan for me: two and a half days of rain.  We got 10 inches over a 36 hour period.  It was fabulous, actually.  We were either in the gym complex or in a parking garage for 1.5 days (the other day was kind of a run-and-find-cover kind of day, as the rain came and went).  The rest of the time, well, I had a mister/fan bottle, a cooling neckerchief that the mother of one of the kids brought me after I got heat stroke the first day, and a folding camp chair that I used one of our older kid helpers to tote around for me. I tried to stay in the shade and just let the other adult helpers do the really vigorous labor while I kept up with the paperwork & looked after the kids in Time Out (we had two that could not stop fighting – they spent vast amounts of time sitting beside me while their friends did archery or BB gun skills).  It turned out to be a great week and I met some fabulous parents from other packs.

We’d arranged for my eldest kid to catch a ride home from camp from another church parent, which went well.  He loved his camp, too.  He got to do lots of stuff that my little heart wouldn’t have been able to handle seeing him do (canoeing all alone & being 100 feet up on the zip line with nothing between him and the ground but a rope – have I mentioned that I’m a bit of a worrier?).  He came back without a voice, but with a renewed respectful & helpful attitude that has lasted several days already.

Anyway, we’re considering tomorrow the real start of our summer.  We have nothing big planned for the rest of it, barring one small trip to see my best friend and another to see my sister and one where just me, myself goes to Florida for a women’s leadership convention.  I’m really excited about all that empty, free time ahead of us.  Sure, we’ve got a swimming membership and a science place membership and a zoo membership, but we can do any of those things ANY TIME WE WANT and not on a schedule.  I’m so looking forward to a nice, calm summer.  🙂

temporarily at home

I did all the end of school stuff this week, followed by a trip to northern Wisconsin for my grandmother’s funeral.  While it was good to be among our extended family & their friends, it was also quite tiring.  I’m back home today, but tomorrow I have to drive a few kids down to south Texas for their week of summer church camp.  The rest of the week I’ll be chaperoning my middle son at cub scout day camp while my youngest son spends the day at their tot lot.

I am so very tired.  I cannot fathom how I’m going to get through this upcoming week.