Thank God for Netflix and Pinterest!

Yesterday when I woke up I felt good.  My pain was at a manageable level, I had good energy, I felt positive, and when I got on the scale for my Monday weigh in I'd lost another 3 pounds.  I pretty much attributed it to the steroid shot my Dr had given me last week.  I get the shots for my bursa in my hip usually, but they tend to have the wonderful side effect of making my skin better and giving me some relief from arthritic swelling for a few weeks as well.  Apparently I was wrong.  I woke up this morning at 4 in pain.  I read for a few hours and finally dozed back to sleep at around 8, and slept a few more hours.  Now I am in full on flare.  My hands are stiff, the bridge of joints at the base of my toes on my left foot is swollen enough I can't wear shoes, my lower back is throbbing and my right shoulder feels like someone is sticking hot pokers in the joint.  So much for my grand plans of organizing today.  It is going to be a couch, heating pad, surf the net and watch netflix day.

This part of psoriatic arthritis is one of the things that is really hard for people to grasp.  Not only will it flare up out of nowhere  but you never know where it will flare up.  People think sick people are just sick.  Meaning that they are always sick the same way.  When someone says they have arthritis people understand there are affected joints.  They expect to see gnarled and swollen joints, but they expect it to be in a specified place.  They expect you to be able to know the ways you will be limited in specific terms.  It is hard for people to grasp that at 41 some days I can walk a mile, some days I can't even put shoes on, some days I can do things that are very fine detailed work requiring fine motor movements with my hands, some days my fingers are frozen into the claw or swollen so I can't open a jar.  It's not how sick is supposed to be defined in people's mind.  People like to have parameters to fit things into their specific boxes.  Psoriatic arthritis just doesn't play well in that box.

So after a good day yesterday, it's a couch day today.  I think I'll change out my wax melting smelly thing to a new scent.  Something sweet and spicy.  Netflix here I come!

Just left of "normal".

I received a call from the specialty pharmacy that sends Humira to me.  They were checking in to see how I was progressing since I started taking Humira.  This was before the miracle big toe discovery, and at that point I really had nothing to report so they went through a series of questions.  How does my arthritis effect my daily schedule?  Does it limit dressing such as tying shoes, buttoning buttons?   This series of questions made me realize that even though I have made alterations to my life to accommodate my condition, I sometimes don't realize how much.  Some things are small changes.  They become ingrained into your daily life so much that they don't seem like accommodations as much as just the way it is.  Until someone actually points it out to you, you forget that anything was ever different.

One example is buttons.  Does my arthritis affect my ability to put clothing on because I can't button buttons?  Well actually no.  Not because I can always button buttons, because I can't.  It doesn't affect my life because I just don't do buttons anymore.  I have maybe 2 shirts in my closet that have buttons and they've been hanging untouched for about 2 years.  I buy my jeans a size too big so I don't have to deal with the button, I can just pull them up already buttoned and zipped.

This got me to thinking about how many things I've adapted in my life to accommodate my growing limitations.  I still cook and I love to cook, but I don't do any fine chopping or cutting anymore.  I don't hand whip and mix anything anymore.  I have bought a stand mixer and 2 sizes of food processors to do these things now.  Yes I realize these are appliances that many people without limitations own, but my whole purpose in purchasing them was because I needed them to continue doing something I love.  I almost always wear flip flops, sandals, or slip on shoes.  Not because I live in Texas and it's required shoe attire, but because tying shoes is nearly impossible on days my hands are swollen and stiff.    There are a lot of days when I just can't get my feet into shoes, but shoes I can slide on and off are doable for times I have to go somewhere.  Every purchase that has to do with daily living has some adjustment for my condition.  I switched from a manual transmission car I loved to an automatic. I bought a bed that is high enough that I can ease down onto my feet in the morning and isn't too high so I can sit on it without effort.  I also have learned not to be quite so OCD.  If don't have to vacuum and dust every Tuesday,  I don't need to scrub the grout on the shower every third Saturday.  I do these things when my body feels up to it, and that is OK. 

All these things are just part of my life.  I don't think about them anymore.  It's usually unconscious decisions because this is how my life is.  I once had someone ask me how I could be OK with how much my life has changed especially over the last few years.  My answer after some thinking on it was that we all have something a little left of normal.  We all make adaptions in our life for that.  We don't stop living. We adjust, adapt and overcome.  We celebrate life for it's blessings and joys, and try to not let the bad moments be the only thing we dwell on.  Life goes on and so do we.