The Dilemma

“Mommy, would you come here?” calls my son.

As I trudge into his room, as I seem to do every night after he’s been tucked into bed, I speculate.  If I were a gambler, I’d bet that a joint hurts.  Which will it be tonight?

Sure enough, when I arrive in his room, I hear him declare, “My knee hurts.”  I turn on the light, examine the joint in question, and ask the usual questions:  When did it start hurting? Do you know the cause? Does anything make it better? Does anything make it worse? Does anything else hurt?

Tonight we’re lucky. It’s only one knee.  Nothing out of the ordinary hurts, just the usual stuff.  “The usual stuff” being his ankles and a headache, plus he doesn’t feel good.  Sometimes it’s his back, often it’s both wrists or his heels.  This kid has more aches and pains than his grandmothers.

It’s not stalling tactics; he isn’t trying to stay up later.  It’s almost as if he can keep things in the background while he’s up and running around, but once he settles into bed, the pain starts screaming for attention.

Dejected, I wonder what to do.  Is there really any point in taking him to see our family physician?  I anticipate x-rays of the joint-du-joir, an expense that would yield no diagnosis of the problem.  Next, a blood draw that might or might not show any abnormalities.  Then, I expect some deliberating… is this nothing, or is this ERA… and eventually a referral to a pediatric rheumatologist.  More poking and prodding and time spent.  Eventually we’d get an NSAID prescription.  I’m inclined to skip all the expensive, time-consuming diagnostic process and just give the kid OTC children’s ibuprofen.

Sometimes doctors give a medicine to see if it will help. I can certainly do that on my own without spending a couple thousand dollars.  If the ibu works, problem solved.  If it doesn’t help, then at least that provides more data for when I eventually do take him to the doctor.

Camp Week

Volunteering in the kitchen was a bad idea.  Yes, I wanted to support there being an affordable summer camp for kids, but the week did not go well.  It was bad for my RA, it did not accomplish my desired goal, and the chef did not create good meals.

RA-wise, I consider my dragon mostly under control (recent flare aside).  Working in the kitchen put an end to that.  I had not realized that “helping” in the kitchen meant working on my feet from 7 a.m. until 8 p.m.  Standing for that long hurt my feet and knees.  All the cutting, chopping, and container-opening did a number on my hands, too. I’d awaken in pain in the middle of the night unable to close my hands into fists, then get up and open-and-close my hands until they quit hurting quite so much and would allow me to get back to sleep.  Even today, half a week after camp is done, I was up at 4:00 with swollen hands.  Helping was not supposed to cause this much pain.

My primary reason for volunteering was so that my daughter and I would be able to spend some relaxing time together before she leaves for college.  For the past two years I have not volunteered at camp because I did not want to intrude on my kids’ time away, but this year my daughter suggested that we’d be able to spend some time together if I was at camp, so I signed up.  The camp director knew I was there to spend some time with my daughter, but gave me a job with no free time. After working in the kitchen for eleven hours, I would shower and fall exhausted into bed.  One afternoon I had time off, but my daughter was photographing one of the group activities at that time so wasn’t available.

That time off — yeah.  That was because I made the chef mad and he sent two of us away.  For breakfast that day he served one piece of French toast per child.  A few kids were able to get seconds, but there were many kids who came back for more food who were yelled at.  I was shocked.  Camp is supposed to be fun; don’t yell at the kids simply because they need to eat.  It is reasonable for kids to ask for a second or third piece of French toast.  In fact, when there are still two cases of eggs (8 dozen each), three gallons of liquid egg, ten gallons of milk, and twenty-five loaves of bread, I think it’s reasonable to stand there cooking French toast until everyone has eaten as much as they want.  BUT I didn’t say anything because I wasn’t in charge.  HOWEVER when lunchtime came and the ravenous kids were told that they could only have one corndog (when there was still a full case of corndogs in the freezer), I asked the other helper to confirm that I’d heard accurately.  The assistant chef heard my question and said he wanted to cook more but the chef said no.  At that point, the camp director walked through and I said, as a parent of campers there, that it was wrong to send kids away hungry when we have food to feed them.  The director told the chef to cook the rest of the corndogs BUT the kids had already been told they couldn’t have more, so only three out of the final box were eaten.  The chef got mad at us and spent all afternoon in the kitchen cooking dinner by himself.

The chef did not provide enough food for the kids.  He claimed that those who came back for seconds wanted special privileges and to get something that the other kids didn’t have.  No, they didn’t want special privileges.  They were hungry and wanted more food; they would not have any objections to other campers also getting enough food.

I also had significant objections to his menu choices.  Corndogs? Ewww.  That might be baseball game fare for some, but it isn’t a nutritious lunch that will provide fuel for active kids running around camp all day.  In fact, the camp director did not eat most of the camp fare, but had separate meals prepared.  More than one camper noticed and found it grossly unfair that they had to eat “disgusting looking slop” but the adults got good food.  The entire menu was so bad that I meant to grab it off the bulletin board at the end of the week so that I could post here just how objectionable the entire week’s food choices were, but got sidetracked on the last day and forgot to grab the menu.

“Sidetracked” means that my youngest child threw up in his sleeping bag during the last night, so I was trying to juggle making breakfast and getting someone to help him clean up his mess.  Then my kindle disappeared during breakfast, and I was looking for it (never found it and the camp director promised to 1) make an announcement but didn’t, and 2) send out an email, but didn’t).  I was sidetracked; you’ll have to take my word for it that nobody who cares about nutrition would have approved of the camp menu.

Nutrition is important.  When I initially volunteered to help at camp, I was asked to run the snack shack.  That would have been perfect.  I’d have had lots of free time to visit with my daughter.  I talked with the person who ran the snack shack the two previous years, then went to the camp director and mentioned that I didn’t want to sell candy bars, but would like to provide nutritious snacks.  She enthusiastically exclaimed that nutritious snacks were a terrific idea.  I talked with a few kids and came up with a list of good snacks.  A week later the director changed her mind.  When I asked why, with a straight face she said, “That’s the way we’ve always done it.”  I called her on it, but she preferred to pay for candy than to have healthy food donated1.  Last year’s snack person told me that they offered granola bars, but the kids didn’t buy them.  It is my personal opinion that kids buying 75 cent items instead of $1 items shouldn’t be taken as a commentary on anything other than price.  Anyway, when I said that I was still willing to do snacks but would limit kids to one candy bar, the camp director put me in the kitchen and asked someone else to sell candy and soda pop to the kids.

Part-way through the week the snack shack ran out of snacks, and I persuaded the person who did the supply-run to buy mozzarella sticks, but those were not made available to the kids until the last day when I put the cheese packs into a bowl of ice and handed the bowl to the person in charge of snacks — who set the bowl where it was hard for kids to see, and refused to write it on the sign board so that kids would know there was string cheese available.  The irony is that those kids I’d talked to for ideas were excited that I was going to have good snacks for them, and were disappointed that they didn’t get good food in the snack shack.

At this point, I should mention that most of the kids had a good time at camp.  Yes, they  didn’t get enough food at the meals, but they were able to buy as much candy as they wanted.  They learned lots, had fun activities, and are looking forward to next year.

I now know that my RA isn’t as well controlled as I had thought, and that I will need to monitor my activity level carefully.  That really sucks.  Then again, that’s true of everything about RA.

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1One way that we keep the cost of camp down is to make a list of all the supplies that will be needed and ask for donations. In the past I’ve donated something from the list. This year, I planned to donate the snacks: fruit, jerky, fruit leather, juice boxes, string cheese…

I’ll rest after I die

Five years ago, I wasn’t sure that I’d ever have a “normal” life again.  This year, finally, I’ve been controlled enough (and learned enough coping tricks) that it’s seemed that things were getting back to normal.  Until this past week, that is.

I’ve been working like crazy, helping the older of my daughters finish her shopping for college.  Unlike most schools, the university she’s chosen has no dormitories.  Instead, there are student apartments for all.  What that means is that not only do students need towels, bed linens, and a microwave, but they also need everything else one needs for an apartment.  Vacuum cleaner, broom, blender, waffle iron…  Not only that, but the meal-plan only provides twelve meals per week, so students must do some cooking if they want the other nine meals people normally eat.  We’ve been watching the ads since January and gotten as much on sale as possible, but now it’s crunch time.  You know you’ve been spending a lot more money than normal when it trips a security flag at the credit card company.

I am exhausted!  “Pace yourself” is wonderful advice.  It just isn’t always possible.  I paced myself up until this past week.  Now I feel like I did when I was first diagnosed:  swollen feet when I get up in the mornings, stiff hands, elbows feeling like someone’s poking pins into them all day long, plantar fasciitis acting up, tendonitis in both thumbs, and fatigue so bad that I’m ready for bed by noon.  Instead of crawling back into bed, I’ve been driving all over town.

I am happy to say that we’re finally done shopping.  Unfortunately, I don’t get to rest.  Since I’d been feeling so well, I volunteered to help at a kids’ summer camp next week.  That might have been a mistake.

My duffle bag is packed.  Pills are all sorted into my pill box.  A syringe is perched atop the mtx vial.  And all I can think is that I wish I could stay home.  BUT my daughter will be at this camp, and we’ll have a chance to spend fun time together before she heads off to school.  To me, that’s worth the sacrifice.

After camp, I’ll have a couple weeks at home to… rest?  No.  It’ll be time to start harvesting the garden.  I have a few posts planned on how to make that easier on the joints.

May you have a terrific week!