Rheumatoid Arthritis and me......

Part of the reason I started a blog was so that I could talk about how RA has messed with my life.  For those in the know that's Rheumatoid Arthritis,  although I only heard it referred to as such a few months ago by a new colleague who used that term.  Her brother had passed away a year before as a result of complications.  Oops, she realised too late what she had said and then fell over her own tongue as she tried to backtrack.  "It's Ok" I said, " I know the prognosis and I know that the RA won't kill me but the side effects of the treatments will".  A momentary curtain of relief crossed her face before she again realised that this conversation, our first heart to heart, was not going well.  I mean, what a way to start what would very quickly develop from a professional peer relationship to a friendship.  I thought it was funny.

So anyway, I start a blog and hey presto the last thing I want to talk about is RA.  Over the past weeks I have talked about a lot of things and have sneakily insterted the word arthritis in a few times.  It was as though I was trying to desensitise you so that when I did say it it would have no impact.

A few days ago, however, I was talking with my Kimmy about how I should really start looking for a support group or something.  She vehemently agreed.  Then I backed off and said I would start with something online.  But, I just can't imagine myself being supportive in the sense that I am not a touchy feely sorta gal.  I am more likely to start giving people hard advice and reality bites.  So, that idea goes on the pending pile.

As my days have ticked over I have sat here periodically trying to talk myself into it.  I typed into the search box to see if there were any blogs out in Oz land on RA.  Too hard to sift through all the trash.  And those I did look at were all about treatments etc.  If one more person asks me if I have tried natural therapies I am going to kill.  I mean really.  Does anyone really think that I would go through life in an agony of agony and NOT try everything I could think of or anything anyone else could think of?  Even a well meaning friend who gave me his grandmother's recipe involving gin (and since Mr J is nearly 70 he is advocating a treatment from the 19th century) was seriously thanked and his remedy duly prepared and tested.  So, have I tried everything...YES.  Am I ignoring anything? I don't think so !!!!!

Just because I have RA doesn't mean I am an idiot.  And just because there are alternative medicines out there certainly doesn't mean I am going to ignore conventional meds.  So far those are the only ones that have made a difference to me.

Now all I want is to be able to talk about RA and how it has gate-crashed my life without eveyone going all mushy. I want the empathy, of course I do, but I want to be able to discuss it without feeling like I am whining.  I want to be able to say gosh darnit my hands hurt today, or my feet are sore or my knees are swollen.  I want to be able to tell people that I cannot make a proper grip today so please dont ask me to open your bottle for you.  I need to tell people not to shake my hand too hard coz it hurts.  My GP doesn't get why, when she pokes me in the hip to give me my iron shot, she is hurting me coz my whole flipping body is sore.

I don't want pity - I just want people to step out of my way as I gingerly make my way through the human tides at the mall instead of expecting me to step around them.  Can't they see I am limping for *bleeps* sake?

101 ways to help a person with RA.

1. Don't squeeze our hands too hard when shaking hands - that look on my face is not normal....
2. Don't hug too tightly around the ribcage - its a hint when I scream so let go.
3. Dont ask if we are in pain because we are - 24/7 and no it won't get better unless you shut up about it.....sorry, was having a moment.
4. Don't say 'can you come here a minute'.  We'd rather not - it hurts. Can you please come to us?
5. Don't ask us how we are, watch. It will be obvious within seconds of us entering the room whether we are good today or not. I like to make an entry by adding 'Don't ask!' if I am not feeling well or a 'Don't ask' even if I am.
6. Don't make us stand and wait for you - it hurts my knees and then I get cranky - ok crankier !!
7. Don't expect us to push the shopping trolley. It will deliberately aim for YOUR ankles - no really I had nothing to do with it - my hands can't control it - are you OK?  Maybe it would be better it you pushed it eh?
8. Don't assume anything - if we can we will, if we can't we won't (unless you are dealing with pig-headed me who will do it anyway and then cry herself to sleep - stubborn old hag that I am)
9. Expect us to be moody at times - living with constant pain is a drag. That's my excuse and I am sticking with it.
10. Give us a hug (refer #2)
11. Start the day with a 'how are you feeling today'? I will respond 'crap'
12. Continue the day with a 'what can I do for you today'? I will respond 'nothing'.
13. Follow through with 'what do you feel like doing today'?  I will respond with 'I don't care".
14. Accept whatever answer you get to #11, #12 and #13 and act accordingly.
15. Give us empathy and support rather than pity and that 'caring' look with your brows drawn and head tilted that screams 'your poor dear' and which infuriates me to the point that I want to scratch your eyes out - but then I am an ornery one.
16. Expect some of us to be pig-headed and try to act as if there is nothing wrong at all  - just get the broom and dust pan ready, there will be a clean up required in aisle 1 at some point. Yesterday I dropped the cat food bowl - stinky fishy muck everywhere.  Well I didn't drop it, it fell - of its own volition and right out of my hand...it literally jumped to the floor  by itself and yes I was holding it properly and no I didn't grab the wrong end so there!
17. Please don't turn off taps too tightly - I don't like making dinner with muddy hands either.
18. Please don't screw jar lids back on too tightly or you will be having maple syrup on your toast instead of jam - which would suit my hubby just fine but still....
19. Please put my hot coffee cup down on the table instead of into my hand - unless you like mopping the floors a lot....
20. Please don't take everything I say literally if the day has started with the words 'crap', 'nothing' and 'I don't care'. In fact, maybe it would be best if you just stay out of the way altogether, but make my coffee and toast first.

...well that's a start - any suggestions from out there in the blogoverse????