Exhausted!

October 12 is nearly over.  World Arthritis Day was today – you know, that “wear blue to support OA” program that never really made any sense to me.  This year the WAD organizers invited IAAM to participate and help raise awareness of autoimmune arthritis.  That’s a good thing to do.

I did not write a WAD post, though.   I am busy.  The only reason I’m writing now is that I tucked my sons into bed, sat down to check my messages, and can’t get up.

Despite all the effort I’ve put into canning apples, there are still four big boxes of apples on my back deck. Those apples need to be peeled and sliced and turned into apple pie filling, then sealed in sterile jars so they will keep all year.  Our crop was astonishing this year, and I still have one more apple tree that needs to be picked. I’d planned to pick that last tree Saturday morning, then spend the rest of the weekend finishing up the apples before I start picking pears.

A happy monkey-wrench got tossed into my apple plans.   Dear friends are coming to visit this weekend. Yay! Oh, no! My house looks like I’ve done nothing but apples for a month!

When I can apples, my kitchen counters get cleared of their normal contents and replaced with canning supplies.  Canisters, food processor, toaster oven, blender, mixer – they all take over the dining room.  Cutting boards, paring knives, peeler/corer/slicers, huge roasting pans, and apples cover the kitchen table.  With no tables available, everyone eats on the couch during apple season.  It’s a mess, but it’s temporary.  We like the end product, so live with the chaos.

It won’t work for guests, though.  No matter how much we like these friends, I can’t have company for the weekend and no table to eat at, no kitchen to cook in.

I spent the day cleaning.  Everything returned from the dining room to my countertops.   I put my canning lids back in the pantry, took the canners back to their shelf in the garage, and put my jars in a box on the porch beside the apples.  Every time I started one job, I discovered another that needed to be done, too. The oven needed to be cleaned, then I wiped down all the cupboard doors, dusted that silly little rail up near the ceiling that nobody would design into a room if they’d ever had to clean that room, and got on my hands and knees under the kitchen table to scrub up all the bits of apple stuck to the floor (my kids are a big help, but they’re not always very tidy).  I washed all three sets of kitchen curtains, and since I was at it, washed the living room curtains, too.  Next I moved the living room furniture so that I could vacuum beneath it, washed four loads of laundry, mopped the kitchen, vacuumed the living room again, and emailed my son at college so he’d know that his bed just became a guest room for the weekend.  After dusting his room and washing all his sheets and blankets, I cleaned the dining room.  I am exhausted!

Did I get to the grocery store?  Clean the bathrooms?  Make the bed?  No.  My kids will clean the bathrooms in the morning while I prepare breakfast.  I’ll send my husband to the store while I finish cleaning the house, and our friends are going to see first-hand what happens when someone with RA overdoes it.

Sitting here, I just realized that I forgot to get meat out of the freezer. That means I will need to go back downstairs, find a pair of gloves, dig to the bottom of the freezer for a couple roasts, haul them to the kitchen, and climb the stairs again — just as soon as I talk myself into getting out of this chair.

Normally I would spend 3-4 days cleaning, and then plan nothing the day before our friends arrive so that I’d be well-rested and able to move.  I’m not rested.  Let’s hope I can move.

Is Methotrexate for RA Chemotherapy?

Dr. Irwin Lim has a new post up titled In My Hands, Methotrexate is NOT Chemotherapy.  Interesting, especially in light of all the bloggers who claim that they’re on chemo for their RA.

Methotrexate has gotten a bad rap.

Expectation effect means that people will respond to a treatment the way they expect to respond.  We’re all familiar with the term placebo effect.  The placebo effect occurs when people perceive that they feel better because they expect a treatment to work (ie improvement on sugar pills instead of a real medicine).  In contrast, a nocebo effect occurs when people perceive that they feel worse because they expect a treatment to have negative side effects (ie get worse/experience negative side effects while on sugar pills instead of real medicine).  Placebo and nocebo are both examples of people responding to treatment in a way that they expect to respond.

That’s a problem for methotrexate, because mtx has a lot of bad press.  If you visit any of the RA support pages, there’s quite a bit of discussion about how to deal with all the horrible side effects of this medication.  Anyone reading the popular RA sites is likely to go away convinced that methotrexate will make them incapacitated with nausea and vomiting.  In reality, 90% of people do not experience this side effect.

It’s important to recognize that the people spending time on those support sites are in the minority.  The vast majority of people feel fine and don’t frequent those sites because they’re too busy living their lives.

Is mtx chemo?  Methotrexate can be used for chemotherapy, and that contributes to its bad reputation.  When we hear the word “chemo” we tend to think:  nausea, vomiting, hair loss, really really sick.   That can happen in chemotherapy.  We need to be clear, though, that chemotherapy is defined as chemical (drug) treatment targeted at killing fast-growing tumor/cancer cells.  The fact that mtx can be used as a drug to kill cancer cells doesn’t mean that it is always used that way.

That’s the case with RA.  In treating RA, patients usually start out with 7.5mg once a week.  In contrast, if I were being treated for acute lymphoblastic leukemia, I’d get 5.5 mg daily, and then 25 mg twice a week once I was in remission (dose is based on body surface area).  If I were treated for lymphoma, the dose could be as high as 153 mg daily.  Even though I’m on the maximum RA mtx dose of 25 mg weekly, I’m still taking much less than I’d need on chemo.

Even though methotrexate can be used as a chemotherapy drug, when treating rheumatoid arthritis there are no cancer cells being killed.  Low-dose RA treatment doesn’t qualify as chemotherapy.

___
Read more about mtx, mtx dosing and body surface area.

Travelling

Travel is exhausting.  Having RA certainly doesn’t make things any easier.  What’s the best way to transport meds?  What if prescriptions need to be refilled during the trip?  Is it possible to spend twelve-hour days in the car without every joint gelling?  To have the best trip possible, it’s good to plan ahead.

My oldest child is now a college freshman, and to make the transition easier on everyone, our whole family made the trip to help big brother settle into his dorm.  Our first day we travelled south to Portland, OR, and across to Boise, ID.  The second day we drove to Denver.  Our third day wasn’t quite as long because we didn’t leave Denver until after lunch, but we still travelled through Oklahoma to northern Texas.  The fourth day we completed the first leg of our journey and delivered our son to his school, two-thirds of the way across the country.  We spent a few days there, and are now half-way home.  Aside from everyone being tired of long car trips day after day, it has gone well.

Refills

Your pharmacist will not love you if you stop by the pharmacy on your way out-of-town and ask for early refills on everything.  I talked with my pharmacist a month in advance to find out what special requirements they had for getting meds early.  My pharmacy wanted a week’s notice.  That week gave the pharmacy time to contact my insurance company to get a vacation override.  I picked up all my refills two days before we left town (allowing a small cushion in case something went wrong).  Your pharmacy might be different, so talk to the pharmacy staff and make sure you get all your refills before it’s time to leave.

Transporting Meds

When travelling out-of-country, it’s a good idea to keep all prescriptions in their original bottles with the original labels.  Since I was not leaving the country, I filled all my pill boxes and left the bottles at home.  The biologic required special handling, though.

Biologics need to be refrigerated, but it’s not necessary to buy one of those refrigerators that plug into the car’s lighter-socket.   $2,700 worth of medicine is worth some TLC.  I placed my pre-filled syringes into the little insulated travel-bag from Humira, along with the bag’s ice pack.  I then placed that entire bag into the insulated travel-bag from Enbrel, along with its ice pack.  That bag then went into our large ice chest.  I don’t think the medicine would have stayed cold enough in only one bag.  Everywhere we’ve travelled, the weather was in the 90′s, and most nights all of the ice packs were melted.  Fortunately, the medicine was still cold.

On my first trip travelling with Enbrel, one of the hotel refrigerators got too cold and froze my medicine, so this time I took extra precautions.  Every night, I left the medicine in the smallest insulated bag (unzipped about one inch) and placed it into a refrigerator.  The insulation protected the medicine from freezing.  If you don’t have access to multiple insulated bags, my pharmacist suggested wrapping the medicine in a towel before placing it into the hotel refrigerator.

No Gelling

Gelling is the phenomenon that describes stiff joints after inactivity due to synovial fluid that doesn’t stay where it belongs.  The key to preventing gelling (if your meds aren’t doing that for you), is to keep moving.  Move the hands, move the ankles and knees.  Move the shoulders and hips and any other joints that are likely to otherwise stiffen.

Flexing the hands periodically can help if you’re driving.  I like to knit while travelling (in the passenger seat).  This keeps my hands, wrists, and elbows moving, and gives me something to show for all that time sitting in the car.

Ankles should be moved, too.  If you write the alphabet with each foot, that will nicely flex your ankles and prevent stiffness (and strengthen the ankles if you put weights on your feet).  I find that simply by changing position so that I can move my feet around, I also move my knees.

A good shoulder roll and upper-arm stretch takes very little time, and is quite helpful in preventing stiffness.

The final thing that I do to keep from getting too stiff is to stop and walk around at least every two hours.  The best way to get the driver to make frequent stops at rest areas is to make sure everyone drinks plenty of fluids – easy enough when the weather is hot, but a bit trickier during the winter.

Many hotels now have a fitness center, so I’ve found it very easy to exercise at the end of a long day, which is another way to make travelling with RA a little easier.

Do you have special things you do to make travel easier?