OK, Just This Once

There's a reason I stopped writing in my other blog "Day to Day with R.A."  Honestly, for me, walking around preaching at people about my arthritis just isn't for me.  I know that many other people with arthritis have done a lot of good by sharing their stories on blogs and encouraging each other.  For some reason I just can't seem to build a comfort level with it.  I did try, I really did.

I'm not saying I want to hide it either.  It's just part of me, like my poetry, my hair, my hazel eyes, the way I swear when I feel any strong emotions, or my music obsession.  It's not what defines me, it's just one part.

So, if you ask me, I'll tell you about it.  But I don't run around wearing it on my sleeve.  I just enjoy living my life, and walking through the crazy roller coaster of everyday life.

People say a lot of well-meaning things to me about my arthritis.  I especially enjoy the one where I can cure it with apple cider vinegar.  I had to smile on that one.

The thing is, I've been dealing with this for over 20 years.  And your helpful advice is OK - you really are trying to help so it's all good.  But, have an open mind.  If you really are interested in helping me, please let me speak also; allow me to tell you the rules.  Because there ARE rules.

Those of us who have been running (or limping, or shuffling) around with this for years usually have done a decent amount of homework.  I saw an interview with Motley Crue the other day.  Mick Mars was asked about his Ankylosing Spndylitis.  As severe as Mick's form of Arthritis is, he described it as "an inconvenience".  I've used that phrase a few times over the years myself, actually.  Mick also knew what gene was involved in A.S. and had read about some of the recent research that was done.

That's a great example of what I'm talking about.  You see, most of us really DO know the score.  We've talked to our rheumatologist, we've seen umpteen specialists, we've done the homework.  We know what we have, we know how it works, and we know what we can and can't do.  Can't sucks but there ARE "can'ts".  We do what we can until we can't.  We don't want your pity, because pity sucks and makes us feel small.  We would like your help sometimes, and we should ask for it if we need it.  The very coolest of friends are the ones who get used to the score and sort of just do some of those things without us having to ask.  You're fucking amazing and we love you for that.

For me, here are "the rules."  These are just for me.

(1) Move it or lose it - you can get yourself in trouble with Rheumatoid Arthritis if you OVERDO it because you can hurt your joints.  You can also get in trouble if you UNDERDO it.  If you stop moving something long enough ,you will stop moving it. Period.  So, by all means, move your ass.

(2) Medication - less is more.  There are medications you will have to take, whether you are happy about this or not.  Usually they have side-effects. Arthritis is an auto-immune disease, meaning your body is attacking itself.  You can't "fix it" easily.  Talk with your doctor and find out what works for you, then take the smallest/least dosage that gets you the results you and your doc are looking for.  Ask a ton of questions.  You're going to be on medication for the rest of your life so don't go crazy taking a ton of everything.  Be selective and stay well-informed.

(3) Healthy Habits - get enough rest/eat right/find other ways to manage your disease.  I find meditation helps quite a bit. Do things that make you happy, things you're passionate about.  Being happy is great medication, it's free and there are no side-effects.

Some days, you'd never know I have R.A. if you didn't look directly at a couple of my fingers.  Other days, it's more obvious, in the way I move.  So, by all means, offer your advice, I'm open - maybe you know about something I haven't heard.  But please, keep your EARS open too.  Thanks for listening.