Posts Tagged ‘Arthritis Foundation’

I Am Blown Away!!!

June 29, 2014

This is my 257th blog post – with 4 drafts – and what is more amazing are the 102 followers I now have.  That is so amazing!  I was so pleased with 25 followers and now it is 4 times that amount.   I am very grateful for all of my followers, I appreciate the comments and to know there are people who are interested in my blog.

On the slight downside, I was getting a lot more spam, but I know they just want me to approve their comment so it will show up in better stats for them.  It all gets deleted, so they have wasted all that time and energy for nothing.  Recently it has slowed down to only a few at a time – I am not interested in house appraisals and inspections in Maryland, any more than all the ones from people selling cars.  Give me a break!  I don’t write anything about any of those.

As I look back over all the posts since February 2010, I started out with mostly writing about RA; then wrote at times about Ike Pono and what I was learning about myself.  Later on I wrote about my Mom and dealing with dementia and about some things going on that have nothing to do with any of the other things.   Yet, all of it affects RA and my state of mind; how can it not?  I also have learned that it is important to find the funny side of things – if I don’t laugh about it, I go nuts.

I started thinking about all the years I have had RA, all the drugs, tests, studies, procedures I have had.  When I am in the situation, odd thoughts come to me that are a bit funny.  It isn’t as though I sat there and said to myself “What’s funny here? or what does this remind me of in the past?”.   Things just came to me.  The times I have been in the hospital, I would keep a pad with me to write down my experiences.  I wrote a journal for several years and I had requests to be put on my list to send it to them.  I realized that writing helps clear things out, help me see things a bit more clearly and there is something that compels me to write things down.

Before I came back to Seattle to live, I traveled a lot with my husband and also by myself.  I would keep my journal going and at one point, I started recording it on a cassette tape.  I found someone to type those tapes out for me – when I read the typed piece, I realized I had left out things.  I may have been a little more conscious of editing because I knew someone else would see it.  People used to tell me I had such an interesting life – reading my journals didn’t have the times of pain, depression, frustration, etc. I had at the time.  I didn’t whinge because I was tired enough of it myself, I didn’t want to write about it.  Besides, who wants to read that?

When I started this blog, one thing that was important to me was not to whinge (moan and complain) because I wanted this to be a positive blog.  I’ve read other RA blogs and they tend to talk more about how they are feeling, what isn’t working, what is – I wanted to have more ideas and solutions.  I know this kind of blogs work for some and I am glad they do.  It’s just me.  I started with the Connecticut Chapter of the Arthritis Foundation doing a support group.  When I was having problems, it was good to have other people understand.  But it felt too focused on me and how I felt, I wanted to do more with people and turn outward than continually inward.

I was asked to be the Speaker’s Bureau Coordinator and later a Self Help Course  instructor and trainer.  I really enjoyed those because I interacted with people, found confidence in speaking before people and seeing something positive happening.  I usually talked about the basic fact of Arthritis – like all things, it was personal rather than just cut and dried facts.  When there wasn’t a lot of time, my stories were the first to go.  I received so much positive feedback and it made me feel so good when someone told me I had helped them so much.  I had felt things were just negative about having RA, here was such an opposite view that surprised and pleased me.

It has not only been with the Arthritis Foundation this has happened.  I have had several people tell me I am their hero.  WOW!  I was and am just being me, yet something spoke to them.  I often wonder how many  I have helped and will never know about it – but I have decided it doesn’t matter, I’m not supposed to know.  I think we all inspire people as we go along our daily life without knowing it.  To me, that is when we are most effective.  I used to think if somebody didn’t mention it, no one noticed what was happening.  But I would remember how many times I noticed something but didn’t say anything to the person.

So, to all my followers, you are the best and I truly appreciate each and every one of you.

Milepost 43

November 30, 2013


I am not sure what I am marking, or is it just a milepost in my life?  I don’t see it as an anniversary or a celebration or anything like that; it’s simply the month I was diagnosed with RA 43 years ago.  I don’t remember the particular date, though I know it was before Thanksgiving.

We had come back from Australia in September of 1970 and found jobs as well as a place to live in about a week or so.  I was working in a nice department store in San Mateo and our apartment was in Redwood City.  As I think back to that time, it almost is as if I had read it in a book or someone told me about it.  43 years is a long time ago and a lot has happened over the years.

I am still not sure what triggered RA – was it bouncing down the concrete stairs on my butt holding an upright vacuum cleaner?  Was it lifting up the wardrobe truck to check for water damage?  Or something else I haven’t associated as a contributing factor?  Then again, it could have been my body trying to throw off the stress of Australia once I was back in my home country.  I have often wondered through the years what happened, but is that relevant now?

Then I began to see myself as a victim, an innocent bystander sideswiped by RA.  But  I now know I am not a victim even though I have spent a lot of years with a victim mentality.  It’s the “Why me?” question.  Did I do something in another lifetime and this is payback?  If so, I hope I had one hell of a good time in that other life.  Or the “What did I do to deserve this?” question.

I’ve thought about it at different times and come up with other possibilities – a preparation for the next life; this is my soul contract; there is a reason and purpose for it; this is my purpose in life; I chose to experience it in this lifetime.  I am sure there are many possibilities; what I have learned after a bit was not the “Why?”, it is the “How?” that is important.

The “How?” is the how do I deal with it?  At the time, I didn’t know I had a choice; I could go get treatment and see what I could do to help myself, or dig a hole and bury myself and not do anything.  Looks as though not knowing I had a choice was a good thing.  I think of all those times I just wanted to curl up in a ball (or as much of a ball as I physically could) and bury myself in the covers.  Then the times when I felt good I was able to do things and have a good time.

When we moved to Connecticut, I became involved with the Connecticut chapter of the Arthritis Foundation.  I started out in a support group, but found it was too “me” centered.  Yes, if I was having a difficult time, it was good to whinge and get it all out.  But I get depressed with constant whingeing, so when I was asked to be a Self Help instructor, I said yes in a shot.  Later I asked to become the Speaker’s Bureau Coordinator.  I didn’t hesitate to say yes.

I will admit both scared me a lot – I always found being up in front of people an agony.  What I learned from both of those was to be comfortable talking in front of people.  Now everything I do tends to be more personal – I can do technical but it’s not comfortable for me.  I put personal things, stories, humor as well as facts into what I do.  If time is limited, I will jettison my stories to be sure I present the important information.  I had a card with the things I needed to cover, so I made sure I followed that.  I will admit I never had a time limit, I just talked until I was finished.  Plus I always told them, any time you have a question, just let me know.

The biggest bonus was feeling I was finding something positive in RA – people would thank me for helping them, saying it made a difference to hear from someone who has it, sometimes it was helping them know and understand “it wasn’t all in their head”.   This from many older women, especially in the class.  There are all the times when I helped someone and I didn’t know it.  I often think each of helps a lot of other people without confirmation.

I loved to hear how wonderful I am, but I was also concerned.  I figured as long as I kept a balance of “feeling I was hot stuff up front” and “do I look stupid standing up here walking back and forth and waving my arms?”, then I would not get a swelled head.  Now there are people in my life who would tell me there is no danger of me getting a swelled head.  A subject for another time.

Ye Gods and Little Fishes!  I am at the end and I am so surprised.  I saw pictures in my mind as I was writing this, a bit of going down memory lane.  Interesting to think about it at this point and seeing it with a different perspective.

P.S.  You have no idea how long it took to find that photo of a mile marker 43.  I wasn’t about to let technology win this time!

A Huge Thank You!

May 1, 2013

I seem to spend more time reading and commenting on other people’s blogs than I do writing my own.  However, I have found some wonderful blogs and delightful people behind them.  I so appreciate them and the 41 Followers I have now.  WOW!  To me that is so cool and amazing.  When I comment on other blogs, I learn about other people and check them out.  I have also had people Like my posts and that is how I find them.  What a fascinating place the world of blogs has been.

When I first started, I wondered if anyone would be interested in reading about RA.  There were people who also were interested in my  Mom’s dementia, plus my every day subjects as well as metaphysical ones.  I am so pleased to have 41 Followers, I so appreciate each and every one of them, as well as all the ones who have liked by blog posts.  Some are in very interesting places and I have learned a lot about things and places I didn’t know anything about.  When there are pictures posted, it really brings it home to me.  Thank You all, it means the world to me.

It has also helped me cope with things, and when I write about dementia, I receive comments that help, support and uplift me.  As all the people who dealt with know, it is not easy and having people who have been through it say they understand, I know they do.  That helps so much as well.  There are so many lovely people out there.

I am following blogs as well, some subjects I have no knowledge or experience with it.  But although the situation is different, I have come to think over the years that there are some basic things we all share in living with and through a difficult situation.   There is something therapeutic about writing down what is happening as well as thoughts and feelings.  I find it helps clear it out for a while and I can see more objectively.  A good cry also helps as well as throwing a tantrum.  It is hard for me to throw a tantrum, I don’t have any experience because my parents were not willing to allow tantrums.  Even a good cry is harder than it used to be – for some reason I know feel there is someone standing next to me watching their watch.  It is as if there is a time limit and if I don’t get on the ball and start crying, time will be up for me.   Where this came from I have no idea, but it does put a damper on things.

Even better, publishing a post that is real, in many ways helps other people.  I’ve learned since my speaker days at the Connecticut Chapter of the Arthritis Foundation that I didn’t often know when I gave the basic facts (along with my own stories) who was being helped.  Sometimes I would have someone come up and tell me and that was always gratifying.  I often thought, it isn’t necessary to always know when I helped, otherwise I might get a swelled head ( childhood program) and my attitude would change and be all about me.  Then whatever it was that was working, wouldn’t any more.   I liked getting the feedback, I knew the more I just put it in the hands of the Universe and I just showed up and got out of the way,  the message would go to who needed it.  I do my best to go on about my business and trust I am helping others.

There are days when I want to write a post and can’t think of anything.  Other days I have several ideas and don’t have time to write any of them down.  Or if I written them down, when I go back to it, I can’t remember why I wrote it in the first place.  Usually I can’t find the list because I have “put it away safely so I wouldn’t lose it”.  There is a lot of that going around.  I remember one day I was somewhere and I thought of questions to ask myself – I was smart enough to put it in the back of my pocket calendar.  I have looked at it several times and wondered if anyone would really care.  So I have it and and I’m still undecided.

I still find myself comparing my blog to others and feel it is lacking (more childhood programs), the other blogs are better.  I am now better at catching myself when that happens, though some still slip by me.   It seems it has taken a long time for me to be aware – living in this time period there are so many more people, classes, etc. to help with all of it.  So much to learn, so much to explore.

So I want to be sure those of you who read, like and follow my blog know how much I appreciate all of you and thank you for a lovely and delightful compliment.

Feeling more human

August 14, 2011

Thanks to Debye Peters and her wonderful deep tissue massages I am much more comfortable in my shoulders -so much in stuffed feelings and balderdash has been expelled.  Now we are working on the hips – then maybe I can finally sleep comfortably.  I went through that awhile ago and thought I had it finished – news flash!  Here we go again.  However, this time I  have help understanding what is going on inside my body – that makes such a difference.

I don’t particularly want to write about how I am feeling, I’m tired of it and I want to keep my promise of no whingeing.  I remember when I first volunteered with the Connecticut Chapter of the Arthritis Foundation, I was helping to form a support group.  That was fine for awhile but I found it was focused too much on how I was feeling – I could do that all by myself.  If I was having a bad time, it was good to be with other people who understood, but I realized I wanted to  do more.  Fortunately the staff there liked how I worked and I was asked to be the Speaker’s Bureau Coordinator.  So I helped put together a Speaker’s Bureau, did speeches myself and also trained new speakers.  I enjoyed this because the focus wasn’t on me, plus I found I could help other people.  About the same time I was asked to be an Arthritis Self Help Instructor.

I went through some training for both and I will admit to being very nervous in the beginning.  Speaking in front of people had always been an agony for me – at times I wondered “How did I get myself into this?”.  Fortunately the Self Help Course started first and it was to a small group of about 10 or 12.  Those ladies were so welcoming and kind to me on the first of 6 sessions.  There was so much information to cover and I was afraid I wouldn’t have enough time for all of it.  I ended up covering in about an hour and half and had to ad lib for another hour or so.  I found myself  being less and less nervous – I think I told them it was my first class.  They were a very appreciative audience and it was a very informal setting, so that helped a lot.  AfterwardsI thanked them profusely for their patience and being my first class.  A lot of them were oder women who had not really taken care of themselves or realized what arthritis was and how it affected their bodies.

I remember one session, I didn’t want to teach because I was feeling so miserable.  But I promised and I couldn’t not show up.  What surprised me was that at the end of the class, I felt a lot better.  I told them at the end of class that I hadn’t wanted to come and I thanked them so much because I felt so much better because of them.  The classes were always filled with wonderful compassionate and delightful women – an occasional guy came but it was mostly women.  I always started out my classes saying that the only difference between them and me was I had gone through the training for teaching the class – I still had to deal with RA, pain, problems and all of that, I didn’t have it made.  I learned so much myself and I was so glad I could be of help in some way to others dealing with a form of arthritis.

When I did the speeches, I was a bit more comfortable in front of people because of the classes.  I had written out my speech so I wouldn’t forget it, then I got to a point where I had a large card with all the points that were important to cover.  I will admit my speeches were full of my own stories, so it was a more personal presentation than just the basic fact of arthritis.  I think I was often a surprise to them, though I always told the contact person I had RA.  I was in my late 30’s at the time and I suppose they expected an older woman with crutches or wheel chair.  One of the messages I wanted to put across was that just because I had RA , my life wasn’t over.  I would introduce myself as the Speaker’s Bureau Coordinator and then talk about the different things I do – church choir, deacon for awhile, mediator for the BBB, etc. and then the last thing I said was “I have had Rheumatoid Arthritis for over 20 years”.  Some people were quite surprised. I remember being at a nursing home and there was one old lady in the front row talking with her friend; in a somewhat loud voice she asked her friend “What does she know about arthritis?”.  Was she ever surprised!

Good Heavens!  I had no idea this post would end up here.  Well, just a bit more information about me, much better than whingeing.

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.


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