Archive for March, 2011

Is this for real?

March 20, 2011

I have been seeing a commercial for a drug for RA and to be honest, it irritates the heck out of me.  They have a picture of a woman in black and white, in a nearly bare room and she is sitting there with a hangdog look.  The picture next to it is in full color with people and activity – the tagline is The life you live, the life you want to live.  Then, because she took the drug, she gets up and walks into the second picture with different clothes and everything is in color and wonderful.

Give me a break!  How many of us sit like a bump on a log all day long for years?  Not me!  Yes, I have days when I am not moving well and it takes some doing to move my tush and get dressed and go out to an appointment.  But I have never felt my life was a drab, colorless existence – though it has had its moments.  This ad bugs me because it is implied that you can’t do or be anything unless you take this drug.  Who told this woman her life was over and she would have to stay at home for the rest of her life because she has RA?  Balderdash!!  When I did speeches for the Connecticut Chapter of the Arthritis Foundation, one message I wanted to convey was that “Yes, I have RA but my life isn’t over!”.  When I introduced myself, I would mention the activities I was doing and the last thing I said was “I’ve had RA for 20 some years”.  That usually surprised them because as many of us will tell you, we don’t always look like there is anything wrong.  That a whole other entry!

Many people with chronic illness know how important it is to be involved and have interests – we also know it isn’t going to come knocking at the door.  We have to go looking for what interests and excites us.  That doesn’t mean there aren’t days or weeks when it is so hard to gather the energy to just get dressed,  that the prospect of volunteering or helping somewhere is just too much work.  The problem with this ad is the assumption that drugs are the only way to feel better.  I notice they also talk very quickly when mentioning the side effects.  Yes, drugs help, but it it takes mind, body, Spirit and emotions all working together to really make a difference.

Often people have said to me “I don’t know how you do so much with RA”.  The answer is – simply out of necessity.  I have had times when I knew they had no idea how many times I have had a bad case of “oh-poor-me-osis” – I am the worst off person in the world and no one has it as bad as I do.   For most of the time I have had it, my husband traveled a lot, so I was home alone.  There were many times when I felt so sore, stiff and full of pain that it was hard to move around the house.  Other times I was physically doing well but I was depressed and lonely.  I would come to a point where I was so fed up with feeling low and just sitting like a bump on a log that out of desperation I went out to see what I could find to do.  I remember taking craft classes, all kinds of other classes, or I volunteered – anything not to sit at home and feel like crap.  Strangely enough, I developed new skills with my volunteering, learn all kinds of things with classes.

To make things more interesting, we moved every 2or 4 years, that meant I had to start my life over in a different place.  over the years I learned it doesn’t work to try to duplicate what was in the last place – start it all new.  I found taking classes, volunteering and joining a Newcomer’s group were really good ways for me.  Then I discovered quilting and that was something I could take with me wherever I went and there are always quilt shops, quilt classes and group plus quilters.  It was a great starting point in building a new life as I looked for volunteer opportunities, classes and Newcomer’s club.  An added benefit to the traveling y husband did was that I was invited along on some trips.  I learned to entertain myself and make provisions in case he had to go to dinner and I was at the hotel.  It meant I had a chance to check out new places – some trips I could walk well, others were just so-so.  As we moved around, we made new friends and sometimes when he had a trip, I would go on one of my own to visit old friends.  Some trips were easier to do than others, so I did what I could in the context of my joints at that moment.

The point of this is that waiting around for someone or something to make things better isn’t usually an option – I had to go out and do it myself.  If you feel you are that woman in the first black and white picture, it is up to you to create your life.  If you want some ideas or encouragement, I would love to hear from you.  Or if you have found ways that work, I would love to know about them – this way we can all help each other find what works for each of us.  I don’t have all the answers, together with comments and discussions, we can be resources for each other.

At last, the gifts!

March 6, 2011

I have been reading Byron Katie’s book “Who Would You Be Without Your Story?” and one of the things she does is turn the statement around and ask for three examples of the gift in it.  Now , I have titled this blog Gift of RA but I am not sure if in the year I have been writing it I have actually been giving any examples of the gifts in it.  I realize I have always seen RA as a negative, something that has messed up my life and made it very painful, difficult and depressing.  Since reading some of the book, I have to look back and see there have been gifts.

I have to admit, it has given me a place to hide so I have not been expected to work, to do things fully and made sure people don’t expect much from me.  Then of course, I surprise them by exceeding expectations.  Second, I have met and done a lot with the Connecticut chapter of the Arthritis Foundation as Speaker’s Bureau Coordinator and Self Help Course instructor and trainer of new instructors.  As a result, I learned I enjoy speaking in front of people  (always an agony before) and was on a cable tv show with doctors and health professionals where I held my own quite well.  It also gave me an opportunity to help others, sometimes I knew at the time, most of the time I never knew.  Third, I have always gotten positive feedback from people, how brave I am, how I do so much while dealing with RA – even had people tell me I am an inspiration and a hero to them.  Very good to hear – yet my ego voice kept chiming in with all the negative so I was not able to fully appreciate the gifts.  Too much of “If you really knew what was going inside, how much I whinge and feel sorry for myself” and all that; thank goodness I am listening to that less and less.  I have spent too much time looking at the negative and feeling negative instead of focusing on what RA has brought me and what I have learned from it.

I will admit to being cranky the last couple of weeks because my hips, thighs and now the knees are really bothering me.  I was doing fine and feeling pretty good, then it felt things were going downhill especially because my right leg now hurts at night and sleep is not as easy or restful.  So I have focused on that and being upset because I was feeling good and now it is crappy again –  in this situation it is hard to focus on the gifts and the advantages of all of this.  Reading the book has made me more aware of what is going on inside me – sometimes it is the pits to be aware, easier to be unconscious about what is happening.  It is uncomfortable to go below the surface and sometimes I don’t like it, but I know it is important and necessary.  I have come to the point where I choose to know the truth about myself – uncomfortable or not.  Before it was willing to know the truth, now I choose it.

If I think about not having RA, if by some miracle I was healed of RA, I wonder if I would actually believe it is true and also if it was down in the cellular level.  Whose voice is that?  So with something positive, the automatic response is negative.  Then I would have to ask “Who would I be without RA?” – has that been my identity all these years?  I am still working on that one.  The other question that comes up is “Can I still do this blog and be authentic without RA?”.  There is in me that childhood training of being completely honest – whether I want to or not – and I wonder what I could offer if I don’t have to deal with it any more.  In the last Ike Pono weekend I was asked why I am still holding on to RA and when I understand that, will I be able to release the need for RA and it will be gone?  What then?  I would feel a fraud and that would be very difficult for me.  Then I would have to ask myself  “Who and what would I be without RA?”.

Good Lord, where is this post going?  I started out to talk about some of the gifts of RA and here I am at a completely different subject – I am tempted to erase it and go back to the original subject.  If this isn’t helpful please let me know – I think my best course is to end this post and see where I am next time.

Am I hiding?

March 3, 2011

Last week my husband and I were in the bookstore having coffee.  Later he saw a book he wanted and asked me if I wanted a book too.   Of course I want a book!  I looked around but I keep coming back to one book when I am there and I decided there must be a message in this.  The book is Byron Katie’s “Who Would You Be Without Your Story?”.  I have looked through it several times and one of the things I noticed is how she takes a statement and is able to get down to the core of the situation.

If that weren’t enough, in the last Ike Pono weekend, I was asked “Why are you still holding on to RA?”.  A very uncomfortable moment but I realized it was more true than I was willing to admit to myself.  So the Universe is talking to me , it just seems that the subtle hints and messages weren’t getting through, so it was time for more direct communication.  So now I have to ask myself why am I still holding on, but also ask who would I be without it?

The “Who Would I be” question is easier to answer now – I would be energetic, able, light, pain free, more focused on what I want to do, more enthusiasm, do things with my husband.   So now the question “Why do I hold on to RA?”.  I know the answer is fear, though not quite sure the exact fear.  I realize having RA is familiar – though very uncomfortable and expensive – so not having it and stepping out into the world and taking a risk is scary.  I know I tell myself (and others) I have a limited amount of energy, limited physically and can’t do things the way other people do who don’t have RA.  It is a good excuse not to do things that are scary or I am unsure about, plus it means if I don’t do them, I won’t be wrong.  The more I think about it, the more I realize I am afraid that should I be RA free with energy, enthusiasm and vitality, I will get in over my head and not fulfill what I promised and let people down.  It also means I have  to step out and take risks, try new things, learn new skills – the fear is not being able to “get it”.  I don’t want to be back in the 6th grade math class with story problems not understanding and feeling lost, scared and clueless.  I do promotional marketing and because there is such a wide range of areas to focus on, I don’t know what to choose.  Essentially I am afraid to choose and find I made a wrong decision – more of that fear of being wrong.  I think that  comes from high school and being told to choose a career to prepare for college.  The unsaid intent was that whatever I choose will be for the rest of my life.  I was afraid of choosing the wrong career and then being stuck with it for the rest of my life.  No one told me that people change careers several times in a lifetime, that the choice isn’t necessarily permanent unless you want it to be.

It is not easy to write this because it is hard to admit and acknowledge how much of what is going on has been my choice.  I realize I have been hiding behind RA for a long time because I have been afraid of the world – the silent message as I was growing up was the world is a scary place.  Be sure you are safe and secure before stepping out.  I have not felt safe and secure, nor does hiding make it any better.  I have realized I don’t like to compete and with RA, people don’t really expect much from me – I have made sure of that by telling them fairly quickly I have RA.  Then when I outperform their expectations, then they are amazed and think I am amazing.  Unfortunately, I sometimes feel a bit of a fraud – I have early childhood training about speaking the truth no matter what.  Now I am grateful for the gift of integrity my parents gave all three of us, it has just taken almost 60 years to realize it.  Sometimes I would love to cut corners, it would make things easier, but that training kicks in and I can’t cut corners.

I am also grateful for the man I married almost 42 years ago.  We had been married about a year and half when I was diagnosed with RA and he has been with me through it all.  He could have said “I’m done” and walked away, but I married a wonderful man of integrity and love.  He has put up with a lot of stuff, invested in pharmaceuticals that don’t pay dividends because they went inside me and watched me in pain a lot of time.  He has done so much to help me and be there for me – he still loves me after all that stuff.  I will admit not appreciating him as much as he deserves and I told him recently that I had to apologize to him, that I truly appreciate him and all he has done, especially the last few years with my Mom.

All this prompts me to start looking objectively at how I see myself –  it been a very negative view and I now choose to see myself in the most positive light and truly begin to love myself.


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