Monthly Archives: May 2013

Gallery

Humans of New York

Okay, so I come to some things very slowly, but I usually get there. There, this time, is an awesome photography blog.  Humans of New York It’s wonderful!  And it has started me thinking (always a dangerous thing) about how … Continue reading

But it’s just arthritis… Yeah… Right…

The “just arthritis” that people talk about when they impart their wisdom on those of us who have courage enough to admit to having RA (or one of the other ‘flavors’ of autoimmune arthritis) is usually osteoarthritis.

The comments are usually something along the lines of…

If you would just lose weight you would probably feel better
Exercise helps everything
Have you tried Gluten Free
Oh, yeah, I have that too in my left knee.  I hate when it rains.
Oh, my grandma had that, but she was fine if she took a couple aspirin
You’ll be fine.  It might hurt but no one ever died from having a little arthritis.

I’m never really sure how to feel about the comments, because I am an odd person who tries hard to believe that most people are well meaning when they make these kinds of comments.  I try to not think they are being deliberately mean or uncaring.  I try to understand that they probably don’t understand.

What bothers me most are the people who, when you try to explain to them that I’m not just fat and lazy, I’ve been tested for gluten sensitivity (and every freaking other thing under the sun) and I’m actually finished three half marathons since my diagnosis.

I know that, after my half marathons,  my body gets a little ticked at me from the stress I put it through.  My joints swell, and I get what feels almost like the flu for two days.  I know people mean well by telling me what is probably wrong with me (and I completely understand that there are SO many things that can be wrong with me), but I know my body.  And I know my doctor.  And I know my test results.

I have shoes in three different sizes.  So I can be decently comfortable no matter how fluffy my feet joints are.  I have wool socks so I can make my feet warm no matter what the weather…. ones for my regular shoes and ones for my Hobbit Feet shoes.

My fingers hurt… in the joints and in the knuckle bumps (hello… knuckle bumps).

My toes hurt.

My ankles hurt and my knees hurt

Not all the time, but usually bilaterally, and when I flare, they swell to nearly twice their normal size.

I have to take infusions every month.  Infusions don’t do anything for “just arthritis  and I certainly wouldn’t spend $2500 a month for something that wasn’t going to be working at all anyway.  And it does (for which I’m very happy).

My hair is thin (I can hold it in an entire hairstyle with one bobbypin) because I’m on chemo drugs and I will be forever.  Chemo drugs do nothing for osteoarthritis.  When I tried by wean off of my chemo drugs, my body got so pissed at me I had to go back to the old dose and add in some extra meds.

I know that I can’t touch elevator buttons, pop cans from a machine, or doorknobs without thinking.

I have to hum happy birthday twice when I wash my hands after I use the bathroom.

I have to carry Clorox wipes with me.

I have to THINK about whether I can deal with buttons and jeans today or if I need to resort to elastic pants and pull over shirts (usually sweats and a t-shirt).

My primary care physician doesn’t even actually bother with diagnosis any more.  If I call with a problem that I’ve had before (and I’ve had many) she just calls in whatever it is I had last if it worked.  I’ve been her patient for nine years.  My record was three inches thick by the time they went full digital.

I think, though, that the bumps are the scariest.  “Just Arthritis” doesn’t come with fancy nodules that grow on your knuckles.  I have them.  I don’t yet have enough joint damage that my fingers lock in any one position or that twist and turn back on themselves.  I can still see the hands of my great great great (something like that) aunt that we used to visit who wasn’t as lucky as I am.

I fight every day to maintain where I am and to scratch a few inches back to where I used to be.

It isn’t the worst think that could happen to me.  I understand that.  But it certainly isn’t “JUST” anything, let alone Just Arthritis.

Gallery

But You’re Too Young

Have you ever heard this?  From family members?  From doctors?  From well-meaning coworkers?  It doesn’t necessarily have to be about RA (or autoimmune disorders in general) but can really be about just about anything.  In my case it is about … Continue reading