When People Ask if the Cold Bothers my RA

So, I live in the great white (sometimes white… often for four or so months of the year there is at least the chance of white, and the resulting cold) northeast-ish.

Okay, I live in Ohio.  It’s not like I live in the wilds of Canada or in Alaska but I live in the north east where there is usually the chance for cold starting in late October and running through at least late February.

Yes, I knew it when I moved back north.

Yes, it was deliberate.

Yes, as I sit here in early August dreading my walk to work this morning and dreading more my walk to the car this afternoon after work, I long for the crisp autumn days and the smell of apples and drying leaves.

No, cold does not make my RA angry.  If I let my hands get too too cold they are very uncomfortable but, duh, that’s kind of a no brainer.  Everyone’s hands kind of ache if they are too too cold.  Cold makes my Raynauds a little bitchy so I carry hand warmers in cold weather in case I need them.  I buy them in bulk at <insert discount department store or super center here>.

I was told, when we started discussing Aspergers with the shrinks in Texas that if you have met one aspie you have met one aspie.  Aspies tend to have similar traits and experiences but it isn’t cookie cutter.  The same can be said for RA.

This is RA for me.  This is my reality and my experience.  August (hot humid weather) makes my RA a bit more on the bitchy side.  It makes my hands get floofy and it makes my fingers and toes ache.  It makes my jaws swell and leaves me with a headache that reaches from half way down my back between my shoulders, up my neck and stops at the bridge of my nose.

I have a jar of Tiger Balm in every backpack, purse and fanny pack I have.  I plunge my hands into cold water and revel in the relief.

This is my RA experience.  This is not to say it is yours. It is not to say it is anyone else’s.  I guess that has been playing in the back of my brain a lot lately.  The differences in how RA manifests, how it reacts to treatment, how it behaves in the body.

Guilty admission… I have gone looking longingly at the Facebook post of a friend after she was told that she can probably count herself as being in remission with RA.  I have to admit I’ve never understood why they call it remission, but that is a doctor thing.  I’m so happy for her that she is with less pain.  I pray that it stays asleep for a long long time for her.

I’ve been talking to someone I used to work with in Texas off and on about her experience with RA.  She has decided that the pain and swelling are just going to be her constant companions.  She is hoping that one of the newer drugs can help her but all of the biologics they have tried with her have not helped at all or if at all not for long.

And here I am, stuck in the middle again.  The biologics work for me.  I’m hitting three weeks between as of today again (looking forward to having to work from home next Wednesday because of my infusion).  I’ve signed up for December’s Santa Hustle and I’m looking forward to walking that half marathon.  I fully believe that, if we don’t have a foot of snow to ‘run’ through it will be a better race than the Presque Isle half a couple weeks ago.  Warm and humid do me in.  My fingers are all still parallel.  My aches are still mostly tolerable.  I’m exhausted by the end of the week, sometimes by the end of the day, but I try hard to remember to save spoons whenever I can.

No, cold does not irritate my RA.  Being looked at and groused at because I know my limits and I need to make alterations (“but you do half marathons”) when I need to irritates me way more than the weather ever irritates my RA.

So, yeah

Don’t let people pigeon hole you. Don’t take shit from anyone and be gentle with yourself.

Love and Light
April
August 3, 2016