Gift of RA

Why is it, during the week I have all kinds of ideas for this blog; but when I sit down to write it, my mind is a blank.  After such a long silence, I thought I would have all kinds of things to say.  One thing I do remember thinking was how much my questions have changed.   I think I did a post about questions a while ago – asking what is the gift and blessing in this situation rather than wailing “Why does this happen to me?”.  Then again, why not me?  Do I think I should be exempt from challenging situations?  Recently I was listening to alternative talk radio and this quote came up – “The Universe is doing it for you, not to you”.

I have to then ask myself what messages have I been sending through thoughts, words and actions?  Yes, the old childhood programs are running, the difference is I am more aware of them.  I was thinking last night before I went to sleep that I have survived, overcome, came through – whatever term one wants to use – the things and situations  in my life over the past almost 70 years.Ye Gods and Little Fishes!  70 in January – how did that happen?  Must have happened when I wasn’t looking.  I don’t feel any particular age, I just am.  When I think about being 70 soon, I feel as though my time is shorter than I thought.

Lately I have been smacked in the face with the results of long-term effects of RA and meds.  It never occurred to me that I would have trouble with edema in my lower legs, then lead to wounds that need to be wrapped to heal them.  My skin has always been tender because it is pale – I sunburn very easily.  Now it is fragile and that concerns me, I run aground on things but I don’t remember when or how, I only notice I have broken the skin.  Everything takes longer to heal because of biologic and immunosuppressant – some days I feel I am between a rock and hard place.

I would have whinged and complained about it before; now I am wondering what I can learn from it and what can I do or think differently.  It is much easier to write it than it is to do.  I suspect the whinge is the first response and I have to consciously change gears to see it differently.  I also was smacked in the face with realizing that when people see me, they see the deformity of my hands.  I am looking at a different angle and know they aren’t  as they used to be.  But I don’t really noticed it.  I think I saw my hands in a mirror and realized I don’t have to say anything for someone to know I have RA – the hands tell it all.

I am grateful about how much my hands can do – I can do a lot of the things I want and need to do – at times strength and flexibility aren’t there, but I have been able to find other ways around it.  My body has made it possible to do things, go places, explore and travel.  I had also been thinking about the question of “What need does RA meet?”.  I had a thought the other day about that – I have often felt there was nothing special about me, but RA is a way to be special and different.  People have often said they don’t know I do all that I do with RA.  I will admit I haven’t been doing a whole lot lately except recover.  A friend recently said she remembers when I was always going and going.  I realize my life has been a lot more sedentary the past couple or 3 years.  Time to put on my walking shoes and walk more.

Now I need to think in terms of how am I special without RA?  Everyone is special in his or her own way, but society says there are only certain ways to be that way.  But is being famous or well-known the most important way to do it?  Suppose each of us recognized what is special about us and worked within our circles of friends, colleagues and acquaintances?   There would be all these circles that would overlap and who knows what could be accomplished.  We all want to be special and recognized, finding that specialness is not always easy – one of those “think outside the box” type situations.

Then there is the question “What keeps me from feeling special?”.   “What makes me think I am not special?”.  Is it childhood programs or feedback from peers, etc.?  Or is it Madison Avenue telling us over the years if we don’t fit the mold, we aren’t acceptable?  Now at this age I am considered old and discounted as not worth advertising to – only those 18 – 34 are important.  I don’t feel old, I don’t feel unworthy or any of that, I am at my best now than when I was in my 20’s and 30’s.  I am smarter and realize what is really important as well as finally understanding so many things that were so confusing.

I feel as if I am on the threshold of a new life, I need to be clear on what I want it to be and begin to create it.  Simple, right?

Sometime this month is when I was diagnosed with Rheumatoid Arthritis.  I don’t quite think of it as an anniversary, last year I used Mile Post 44.  I found a couple of things to use this year, as soon as iPhoto shows them, I can put them in the post.  Sometimes it takes a day or 3 for them to be visible – sometimes I feel defeated by technology, other times it works well for me.  So, I have decided to go with the flow and do this post a little later.

I never did find the sign posts in iPhoto, so I just did them again, only this time in Pictures – it might be easier to find them.

That worked so much easier – I will try it  on other photos and see how it works.

Now that I have been through all the  balderdash, it’s time to get to the meat of this post.   I haven’t really found any term for this yearly milestone that completely describes it.  I have admit to being amazed it has been 45 years since the diagnosis, seems such a long time.  I realize there has been quite a history with it, so much I can’t remember all of it.  That may be a good thing.  There are the experiences I written about in this blog; there are the volumes I have of my journal for quite a few years and my medical history.  It is harder to remember my medical history when I see a new doc and they want to know everything.  I realize now I would have been smart to copy the records I took with me each time I moved – I’d have a better history than my  memories.

As the years have gone by, I realize my questions have changed – sometimes 180.  In the beginning it was “Why me?”, “What did I do to deserve this?”; “If this is payback for a past life, I better have had one hell of a good time!”.  Because doctors are taught about drugs and surgery in med school, that is all they know.  I have had my share of drugs, 7 years looking for a drug to work, some that did nothing, others that help a little and some that really did help – for a time.  Let’s call it what it is – a victim mentality.  I was an innocent victim sideswiped by RA for no reason.  It has brought anger, resentment and hurt and I kept asking “Why?”.

I started asking “How?” after a  while – “How do I get rid of this crap?”.   I just wanted it to go away and leave me alone forever – enough already!  I have been in that negative territory for a long time, I couldn’t see any benefit to having RA, just all the pain and disadvantage.  I heard and read about “Embracing it”  which seemed counterintuitive to me, accepting it and loving it.

When I moved back to Seattle, I began to hear and read about other ways to see and think about RA.  Maybe I was so ready to fight my way out of the negativity.  When I started this blog, I started with the premise there is a gift in RA.  I wasn’t sure how that was possible but I was willing to entertain the idea.  I had to look at it and me from a different perspective.  I have found that is a difficult maneuver for me – maybe because I spent so many decades in the negative.  For the past few years my questions have changed – I will admit to having “Why” moments now and again.  Now I am concentrating on the gifts of RA.  As a matter of fact, I wrote a post about it in March 2011.  I went back to read it and found I had not really done such a good job in defining the gifts as I thought.

What I have noticed is my questions – they are different.  One is “What need is being met with RA?”.  I was reminded the other week about this – we create attitudes, ways of being, etc. to meet a need in that moment.  It works for a while but not in the long-term.  However, the program is still running because we forgot about it, yet it isn’t working any more.  I realized there is another question, “What do I believe about myself and RA?”.

Some other questions come to mind. “What will it take to create new positive and empowering thought patterns?”.  “What else is possible?”.  ‘What needs to happen to make the changes?”.  “What am I holding on to that no longer serves me?”.  “What does the Universe want me know?”.  “How much is my energy and how much is other people’s energy?”.  “What is the Universe doing for me, rather than to me?”.  “In what ways can I use my knowledge and experience to be of use and service to others?”.  “What can I learn from others, especially the ones that bug me the most?”.

So my questions have changed over the past few years.  I know some people have all the answers, I’m still working on the questions.  I know I will have more questions for the rest of my life, I want to be sure they are the questions that matter and help me create a positive, loving and empowering attitude and life.

As everyone else is, I am a work in progress.

I started this blog with the intention of looking for the gift in  having RA – like the little girl digging through the manure, convinced there is a pony in there somewhere.  I have found some gifts since I began, what I didn’t think about was gifts in the rest of my life.  I wrote yesterday about how I have been feeling and dealing with this flu/cold stuff; later I began to realize there have been some benefits to it as well.

Me during the balderdash!

Something I have noticed lately is that when I have this kind of stuff, the RA behaves itself and doesn’t give me problems.  I have not been stiff or really uncomfortable with it – probably because so much other stuff has been miserable and uncomfortable.  I’ve come to the conclusion I have my mind on the stuff rather than RA; is that secret it to it?  To keep my mind busy with other things so I am not focusing on the RA?  I’m not quite clear on how that works and how to use it consciously to distract myself.  I notice that I am not coughing for a bit – then I am coughing a lot.  Too bad I noticed it.

Later – much later!    It’s been 5 weeks of this balderdash and yesterday I finally felt more myself.  I had energy and interest in doing things – something that has been missing for a while.  Now that I am feeling better, I can look at the whole experience with more objectivity than when I was in the middle of it.  Yers, still some cough, but so much better.

I went to see my acupuncturist for 6 visits, plus took Chinese herbs and a supplement for my immune system.  It really helped with congestion in my sinuses and slowly helped with the cough.  I also found out that when I have that “coming down with something” feeling, I need to go see her to nip it in the bud.  Too bad I didn’t know that a long time ago.

I’ve had to rest more, have lie downs or naps, especially when I wasn’t sleeping well at night.  Since I wasn’t feeling all that great, many times it wasn’t a chore to have a lie down.  As I got better, I found myself running out of energy quickly, all I wanted to do is lie down and close my eyes.  Last Friday I was feeling restless and frustrated – I wanted to do things but wasn’t quite ready yet.

I didn’t see my Mom for a couple of weeks because I didn’t feel well and I didn’t want to give the balderdash to her or anyone in the house.  I have since been to see her and she has been sleepy but enjoyed chocolate and cookies.  I read to her today, though I probably messed up my voice.  She was more awake today and she seemed to enjoy the book.  We’ve been having a lot of fog, so it is more comfortable and warm to sit in the recliner with her throw over her.  I have arranged a haircut for her next Thursday, long overdue.

What other gifts have I received because of this stuff?

I’m not sure it is a gift, more an oddball observation.  I usually think in terms of a tickle in my throat before I cough – this time it was an itch.  Is there such a thing as an itchy throat?

Something to think about another time.

Me feeling so much better!