Posts Tagged ‘rheumatoid arthritis’

Another one of those days!

November 27, 2010

I certainly didn’t expect to have another one of “those” days quite so soon, but there is no telling what will happen from one day to the next.  I am working on seeing Life as an adventure and that isn’t always easy.  Last night was one of those “end of my rope” times – I am still not sleeping and I was really dragging.  Plus I felt a migraine coming on and it just seemed as if I couldn’t climb out of the hole of not sleeping very well for so long.  I  also was really feeling pain in my legs – I was at that point of starting to cry.  But what surprised me was how I  found myself feeling better – I got to thinking that as long as I focus on not sleeping well and being so tired – isn’t that creating what I don’t want?   It was time to change direction, so I just asked God to change my attitude to positive.  He has done that many times before – one time I remember especially.  It was 1974 and we had just moved to an apartment complex in the South Bay of Los Angeles.  A brand new apartment, bigger than the one we left in San Francisco, but I felt “I don’t like this place”.  So I asked God to change my attitude and by golly, the next time I thought about it, I was fine.

I grew up with a legacy of several generations of negativity – how amazing that given that history, my Mom and Dad definitely changed a lot of that pattern for the three of us girls.  They always made us feel loved and wanted and we did so much together as a family – Dad always said if they couldn’t take us somewhere, they didn’t want to go.  They also brought us up with integrity – some days it felt like a blessing, other days more of a curse.  How could I be a “bad girl” with all that “good girl” programming?I always wondered what it would be like to be a “bad girl”.  Mom and Dad gave us  a good grounding in many things and more and more I realize how blessed I was to grow up in this family.

The negative part was always there as well, not always spoken, more implied.  One of the negative concepts was that the world is a scary place, so be safe and secure before venturing out.  Not conducive to taking risks and stepping out of the comfort zone.  There didn’t seem to be an example of stepping out to help guide us – so I have always been scared to step out in something risky.   Except one that I ended up copying.   Now I know that going down to Australia to marry a man I hardly knew was certainly a risk, except I didn’t really see it that way.  My aunt has introduced us and if she thought there was anything shady about him, I know she would have let me know in no uncertain terms.  Plus I had my Mom’s example – she went to California to marry my Dad right after Pearl Harbor even though her family thought she was crazy.  it took me as long to go to Australia in 1969 as it took her to go from Connecticut to California in December 1941.  I realize there was an objective in that rip, he was at the end of the flight and I couldn’t wait to see him again.  There were a couple of three times when I thought to myself “What am I doing?  I don’t know this man” .  That’s when The Voice arrived, asking “Well, if you don’t go, how will you feel?”.  The answer was, I would regret it.  The Voice said “then shut up and do it!”.

I know my parents loved us, but it seemed there was always second guessing and micro-managing – any time we did something or went somewhere.  It was a constant “Don’t fall down the bank”, “Don’t trip and hurt yourself”, “Don’t cut yourself” “Don’t, Don’t, Don’t”!  That was when we went to the property they owned on Vashon Island and we checked out the fruit trees, the high bank waterfront on the Sound and the old barn with all kinds of things inside.  Ye Gods and Little Fishes!  Did she think I or my sisters were going to do things deliberately to see how much damage we could do with the least amount of effort?  Give me a break!  We did have common sense after all.

Recently I began to be more aware of the patterns of only looking at the negative.  We have a long, steep windy hill in front of us and we can get to West Seattle more easily that way.  So when I was driving my Mom down it one day, she talked about going over the edge and ending up in a heap at the bottom without any trouble.  I suddenly realized I didn’t want to buy into that any more, so I said we could just as easily go down the hill and get to where we were going  with no problem.  I had never done that before and I have started noticing things ever since then.  It does take more practice to be aware of the negative patterns – negative autopilot is easier and more familiar.  It is slowly getting easier as I practice – I am a work in progress.

One thing I have chosen to do is to set an intention of  knowing the truth about myself because I now know it isn’t all negative as I have always feared.  Yes, there are things that are uncomfortable, may make me cringe and aren’t easy to admit and embrace; but there isn’t a godawful bitch on wheels in there after all.  Inside there is an amazing woman coming into her own and she is a Kickass Warrior.

There are days!

November 21, 2010

Last night was one of those low points, I haven’t one that low for quite awhile.  I have two situations going on as well as dealing with RA – amazing how they all combine at times.  Last night I was putting off going to bed because I have not been sleeping very well the past few months because my legs hurt so much at night.  I will admit to feeling worn out and worn down at the moment, not sure what to do or not do to understand what’s happening and what I can do to help my wonderful body – my friend and healer – to create healing for my legs.  It has taken me a long time to see my body as healer, friend and beautiful – not quite there wholeheartedly but a heck of lot closer than I was.  I am uncomfortable admitting that when I am “drag my ass tired”,  I tend to be cranky and not especially objective.

I had a conversation last night that put me over the edge – I was ready to cry and the tears were coming.  But there isn’t anywhere to go to yell my lungs out, beat the pillow and generally howl with pain and frustration.  The odd thing was, I was thinking about one of the other situations that is foreign territory to me and nothing to guide me through it.  Yet I heard myself say, I can do this, whatever it requires I can do this.  I may feel like running away and not dealing with it; I may not want to do something necessary, I may not like doing it – but I can do it.  I don’t remember ever thinking that way before – I usually had that scared little kid feeling of “I can’t do this, I want my Mommy”!  By George, there is a real adult woman inside me these days and that feels amazing.  I still am not happy dealing with this situation, but I am seeing it as a capable adult woman who knows when to seek advice from those with experience.

I can’t honestly say why I was so upset last night, maybe it is just all of it coming together  because I am tired.  I know two of the situations I can leave the house for awhile and not think about it or have to do anything.  But I have to take my legs with me – ain’t that a b—-h sometimes.  I would love to leave one or more body parts at home so I could have some fun – jump, skip, climb and whoop it up.  But so far I haven’t created a way to do that, so the body goes with me on holiday, to parties, to fun things and here I am thinking it is in my way.  In my more rational moments, I realize how grateful I am to my body because she makes it possible to use all my senses to experience the world, my legs have taken me to places in the world and the US. I have always wanted to go – some were interesting but I have no desire to go back again and I am glad I was able to leave.  Without her I couldn’t read, write, quilt, laugh, hear Puccini arias or all of Beethoven, I could see or hear the ocean and waterfalls; I could smell or taste all those wonderful things from my Mom’s kitchen or appreciate her gorgeous hooked rugs.  I am so grateful that most of my body systems – respiratory, digestive, circulation, etc. all work really well, just a few problems with joints, tendons, muscles and ligaments.

Those are my rational moments.  Last  night was one of my “oh-poor-me-osis” moments when I feel very sorry for myself and think I have it worse than anyone else on the planet. (I can be a global thinker at times).  I get into that victim mentality and and wonder why I am lumbered with all this, what did I do that was so bad I deserve this?  Well, I hope I had one hell of a good time because this is the pits. Then there are those who think they are helping by pointing out someone who is worse off than I am – that just makes me cranky and feeling I have been dismissed and devalued.   As if what I deal with is not as major or important or serious as the person they have mentioned.  At this point in my life, I would like to tell them to shove it where the sun don’t shine, Thank You very much.  Unfortunately my Mother and Father brought me up to be polite and it is extremely difficult to go against early childhood training.  However, I have on rare occasions actually been able to do it.  Then I feel badly afterwards because I wasn’t the “good girl” I was brought up to be.  Rats!  Can’t even enjoy that rare moment!

Funny, this time I didn’t feel a lot of that stuff, it was more calm and the tears were just spilling over on to my cheeks; it was almost as if I was too tired to feel, much less examine exactly what was happening.  I went to bed and my husband, bless his heart, just folded me into his arms and let me cry.  Yikes!  As I write this I find my eyes filling again so I know I haven’t cried it out or resolved it yet.  And I didn’t sleep all that well last night either.  I am a work in progress and no doubt will be for the rest of my life.

Something surprising I have noticed in the 40 years of RA, whether I am in pain and really low, on a high or anywhere in between, I have an ability to see some humor in it as I describe it to myself or write it for someone else.  These things pop into my mind just at the right moment and it feels right, that it fits.  I don’t sit and think, “now what does this remind me of or what word or phrase can I use to describe this?”, it just arrives with no effort or thought.  Those can also come out not the way I meant and it means another foot in mouth moment.  So I am grateful for it and appreciate the boost it gives me.

“Do You Have Rheumatoid Arthritis?”

September 12, 2010

That was  what the ad  said that I saw on the back page of the first section of the Seattle Times about a place near Tacoma looking for people with Rheumatoid Arthritis.  They are doing natural supplements, so I called, left a message with my phone number.  The next day I had a call from Leslie and she said I needed an official diagnosis of RA and a year of lab work.  I call my rheumatologist’s office and talked to her assistant who said she would fax it over.  I gave her Leslie’s name and number so she could find out the fax number.  Then the following week I called Leslie and she made an appointment for me to see a doctor to evaluate me.  So I am not quite in yet, we will see what happens Wednesday.  The lab and the natural supplements will be paid for by them, though not sure how long the project will be – something to ask the doc.  I am happy they are natural supplements since I have had my fill of meds – though I am still taking them so I can move.  It isn’t anything harmful and I don’t think I will have to stop my meds.  Lots of questions, answers on Wednesday.

Leslie sent me an email with the registration form – Ye Gods and Little Fishes!  It’s 20 pages and it’s a good thing I decided to work on this morning.   I am up to page 11.  The thing about having had RA for 40 years is there are so many things that I don’t remember them all or when.  I moved around a lot so I have to stop and think so I can picture where it was.  Then I have to remember what doctor it was so I can remember the city.  Some of the docs were great, some were okay and some were lacking in bedside manner.  Thank goodness none of them were quacks or incompetent – when I was ready to go the next city I would ask for a recommendation from my present doc.  So I did quite well in that department.  I remember one who was lacking in bedside manner, but he knew his stuff and that was much more important.  I  have been meaning to keep copies of records I fill out so I will have it for the next time – except I haven’t.  So I am doing this one on the computer so I will print it out but also have a copy for myself.

In a way, filling out this form has helped me look back at what’s happened over the years, there may even be a point when I will see a time or incident that was a gift I just didn’t recognize at the time.  I look back at how young and inexperienced I was in November 1970 when I was first diagnosed – no idea what RA was any more than I really knew anything about the world or Life.  Well, I have definitely received an education in 40 years, I am a very different person now.  I was a young girl then, I am a woman now and stepping into my power at last.  I probably had to go through all of those events during those years to be the woman I am today – I can’t honestly say I wouldn’t change a thing;  I may need more perspective since I am a work in progress.   I remember when I went to Australia in 1969 to be married, I was 22 going on 16, though I thought I was terribly mature.  Well, a year and a half in the boondocks of New South Wales certainly helped me grow up a lot, then 40 years of RA has finished the job.

As I think about doing this project ( if I qualify and am accepted) I wonder if I have any unconscious expectations?  Consciously I am setting an intention of being open, receptive, willing and unlimited, to take it as it comes and see what happens.  Will this be something that makes a difference and helps me be more comfortable?  I know there is a lot of inside work I have to do that no pill or liquid can change – I have to change it.  What’s different about that is now I am willing to know the truth about myself because now I know there isn’t some god awful bitch on wheels living at the core of me.  There is probably a scared little girl;  plus my inner bitch, but she is also necessary as well as the loving person I am.  I have decided that the truth about myself isn’t all negative as I have always thought, there are some less than nice parts but on the whole, I am a really nice person.  Now my childhood training said that you don’t talk well of yourself because it is boasting.  So the last couple of sentence were a bit harder for me – I kept wondering if I was boasting or being arrogant.  As they say in Ike Pono, your programs keep coming up, it is how you deal with them that makes the difference.

I will keep you posted on what happens with this project.

What Happens in the Wee Hours?

July 24, 2010

I wish I knew more about my body and how it operates.  For as long as I have had RA, 3 – 6 a.m. has always been the most uncomfortable time of the 24 hours.  Though I have had times when it was miserable all 24.  What is it about that time span that makes everything much more uncomfortable to the point I can sleep because every position hurts?  Is it Circadian Rhythm in full force?  And just what is Circadian Rhythm?  I checked Google and from The National Institute of General Medical Sciences this is their definition:

Circadian rhythms are physical, mental and behavioral changes that follow a roughly 24-hour cycle, responding primarily to light and darkness in an organism’s environment.  There is even a picture.

The pictures are pretty but none of the explanations really make sense or answer my question.  Another question is why at about 6 a.m. I can go back to sleep as if nothing was wrong.  What changed and tipped the scales at 6 a.m.?  Why is it so difficult for doctors and health professionals to give me a simple answer to something?  How about words of one syllable  I can understand instead of all that medical speak.  That may explain why I feel I have had to do and learn so much of this on my own.  Would it make a difference it I had a solid answer?

The problem compounds itself when I don’t get sleep for a night or two, it gets harder to sleep and sometimes I have been so tired I can’t sleep.  I do naps in the afternoon and that helps; I don’t like to feel I am dragging around all day because I wasn’t able to sleep.  I realize that is part of resisting the whole disease situation and what you resist persists.  Still working on that dynamic because I suspect it puts a lot more stress on my body, mind and spirit – let’s face it, stress doesn’t help anything.

Where am I going with this?  It’s sounding a little too much like whingeing and that isn’t the reason for this blog.  I have begun to look more at how I see things, especially RA.  Has all the focus on how much I hurt, how difficult it is to move, how clumsy and awkward I feel makes it worse.  Hmmm, what I focus on increases, so it looks as if I have some changes to make in my thinking.   Where did I learn that thought pattern and what do I change it so there is a more positive outcome.  I go back to Eckhart Tolle and “Are you willing to accept this is what you are feeling at this moment without wanting it to be different?”  Then I “should” all over myself – I shouldn’t feel this way, I should focus on the positive, I should, I should I should.  Where is it written that there is something wrong with feeling crappy about something once in awhile?  Okay, I feel crappy about this situation at the moment – it doesn’t mean I am going to spend the rest of my life in this frame of mind.  and please don’t tell me about someone worse off, that just makes me cranky and dismissed me.  I need to see that myself, not having it constantly pointed out to me.

Interestingly enough, I have tried the Eckhart Tolle suggestion when I hurt in the middle of the night and it has helped at times.  Some days ego is in charge and it feels as if  it is too much effort to make the switch and I continue to feel sorry for myself.    Sometimes writing it all down helps – I have tried many things n the middle of the night to either make myself more comfortable or do other things to keep my mind off my pain.

Phooey!  I have been sitting here raking through my difficult times and it’s time to do something else.  I need to put my shoes on and go walk out in the sunshine for a few minutes – we don’t have sun that often here.  I am not sure I have made any progress but the writing has helped to express some of my questions and frustrations.  I wonder what other people do in the wee hours to relieve some of the pain.  I am always open to suggestions.

A Different View

April 18, 2010

I have spent most of the last 39 years seeing RA as a burden and an obstacle to being a healthy, well-rounded person.  I have been to traditional doctors and used pharmaceuticals because I didn’t really know there was any other option and viewed RA as nothing but negative.  Of course, I wasn’t open to seeing that I had a part in it, so much easier to be a victim and an innocent bystander side swiped by RA for no reason.  A few years ago I began to be more open, more willing to at least think about how I may have contributed to it – still too scary to really examine.  About 5 or 6 years ago I started meeting some people in a networking group who did alternative medicine – the “Woo Woo” stuff.  I tried something with an Overlight Metaphysician – still working on understanding that one – because I had won a free  session.  I wanted to know what was causing RA but also a little afraid of the answer – might mean I wouldn’t be able to see myself as a victim any more.  She was an amazing woman, very understanding of my fears and very gentle with me.  She told me some astounding things , that she saw my guardian angel and also 2 spirit guides.  I had no idea they were there.  She asked me the name of my guardian angel, I hadn’t a clue.  Then she said she saw the letter J – first thought was Julia.  She said Julia was a 14 foot angle; boy, did that blow my mind.  She also told me that by telling people I have RA, then they don’t expect very much from me and then I surprise them by doing a great job.  I do it so I don’t have to compete.  That is quite true, I don’t like to compete because I always have felt too many steps behind everyone else.  She gave me a lot to think about.  I wish it had been recorded because if I listened to it now, I would pick up on a lot that didn’t register at the time.

I have worked with other practitioners of Reiki, Reflexology, energy medicine, singing crystal bowls, Diksha to name a few.  I have been reading books as well, talking to others, subscribing to newsletters and essentially becoming ready to see RA and its origins in a different way.  I came across a book by Misa Hopkins called “The Root of All Healing”.  A really cool book because I feel she is talking directly to me and knows what I am thinking and feeling.  She has had some great blog entries that  really hit me – she puts into words what I am trying to say.  I found Colin Tipping’s “Radical Forgiveness” a completely new way to view forgiveness and a way of seeing situations  as a way to resolve a difficult situation.

One thing I have been starting to understand is that this whole situation and my life  is not just a random thing – there is a pattern and purpose when I finally see and understand it.  For so long the question has always been “Why me?”.  Well, when I have heard people say “Why not me?”, I begin to wonder the same about my situation.  One thing I have learned over the years is that I am helping people a lot more than I realize, it’s just that I don’t always know.  That’s not a bad thing because if I always knew when I was of use to someone, I would never be able to get my head through the door.  Plus, whatever that is working would probably no longer be there.  So often we all are of use to other people when we are unaware – I would always ask God to give me the words, actions, attitude and thoughts when I did a presentation about RA, I would just show up and get out of the way.

I have been reading about surrender, that when I can surrender to RA I will be ore at peace.  I am still working on that because surrender to me means being overwhelmed and trampled.  So I decided to look it up in the dictionary:

verb (used with object)

1.  to yield (something) to the possession or power of another; deliver up possession of on demand or under duress: to surrender the fort to the enemy; to surrender the stolen goods to the police.
2.  to give (oneself) up, as to the police.
3.  to give (oneself) up to some influence, course, emotion, etc.: He surrendered himself to a life of hardship.
4.  to give up, abandon, or relinquish (comfort, hope, etc.).
5.  to yield or resign (an office, privilege, etc.) in favor of another.
Then I found this one in Wikipedia:
To surrender in spirituality and religion means that a believer completely gives up his own will and subjects his thoughts, ideas, and deeds to the will and teachings of a higher power.
I then came across this from Let Go, Let Miracles Happen: The Art of Spiritual Surrender
by Kathy Cordova. Posted by: DailyOM:
The notion of spiritual surrender is quite different. Spiritual surrender is not about defeat; it is about acceptance, joy, and faith. Surrender is about ending the struggle in our lives and beginning our journey on a path more wonderful than we could imagine. As Marianne Williamson says in her book, A Return to Love, “Surrender means the decision to stop fighting the world, and to start loving it instead. It is a gentle libTo relax, to feel the love in yourheart and keep to that as your focus in every situa- tion—that’s the meaning of spiritual surrender.”
She has a great article and helps a little more for me to find my own definition and understanding of surrender.  I keep saying I am a work in progress as I travel on this journey.  I don’t really have a plan or itinerary with this journey – as I look back I don’t see one either.  Maybe when I get closer to the mountains it  will appear.  Yet I think there is some leading by Spirit, God, the Universe – whatever one calls that higher power – and I have been lead to people, places, things and ideas that help me come closer to the knowledge and understanding I seek.  The biggest thing I can see is that I am more open, receptive, willing and less limiting in my view.   Things no longer seem unbelievable; I have spent so much time playing small so others will feel secure, I’m ready to play big.
As I look at this entry, I realize I started out with one idea and it seems to have travelled all over the place.  Usually I write it first and then look it over before adding it to my blog; this time I felt compelled to just start writing  without the usual preliminary draft.  I hope the ramblings are of use to someone, it helps me to sort through what I am trying to understand.

Sentence or Journey?

April 4, 2010

As you know, I have been dealing with RA for 39 years – as I look back over those years, I realize there is a difference from Day 1 to today.  For so long I have felt I was  suddenly sentenced to deal with RA with no hope in sight of an end.  I would look at others dealing with a broken bone, surgery, illness, etc. and think – They have a limited length of time to deal with it, that after certain stages are accomplished it will be finished.  Knowing there is a time limit seemed to be a lot easier to work with than to feel there is no limit.  There didn’t seem to be any hope of a suspended sentence, time off for good behavior or maybe even a pardon.  Not only that, it wasn’t going to kill me, just make my life miserable for years on end.  (I apologize for whingeing when I promised this blog wouldn’t be that way).  Essentially it was a bad, long term case of “oh-poor-me-osis – I am the worst off person in the world, no one has as badly as I do.

I realize now that was Ego, my false self, being in charge and the worse it was the happier she was.  She revels in the negative, the scary, everything with fear.  The worst part was that I thought that was me and I wasn’t happy about that.  People would tell me how positive an attitude I had – I kept thinking, “You have no idea the bitch who lives inside me and whinges all the time”.  I would feel so sorry for myself, why did I have to be drag may ass tired all the time, hurt from head to toe, take all those drugs and be on the business end of a needle.  Why can’t I have energy and flexibility like everyone else and have fun and do what I want, when I want, how I want?  All I could see was what I couldn’t do, couldn’t be.  I realized I was fighting it, that RA and my body were the enemy that I didn’t have any defense against.  I often felt hopeless and helpless, while at other times I felt useless.

I don’t know when I began to think there might be a different way to look at it because there was no big “Aha” moment.  I found different books to read, some people recommended, some I found myself and some I stumbled across in looking for something else.  I read the first volume of “conversations With God” and one line in it kept bugging me because I couldn’t visualize it or clearly understand – “What you resist, persists.”  I read it 2 or 3 times, then went on to Volume 2, then Volume 3 and to a couple of other books he wrote.  I didn’t really understand it, but it was a different way at looking at life, myself and God.

When I started reading Eckhart Tolle’s “A New Earth”, the business with ego and false self took awhile to understand, even then as now, I still am working on it.  Another book I read was “Radical Forgiveness” by Colin Tipping – his view of things in one’s life was very different from what I had been thinking and feeling.  The idea that people and situations that come up in one’s life  could be a soul contract with another’s soul to resolve the situation, especially an ongoing one.  That is still a little unclear for me but I am now “willing to be willing” to explore it and understand it better rather than dismissing it out of hand.

And of course, Dr. Phil.  As much as I want to ignore some of his questions, I know they are true.  When I am in a situation and certain I am right, his question “How’s that working for you?” comes up and I have to admit it isn’t working.  He also says “You can’t change what you don’t acknowledge”.  How often have I been so not ready to see what my part is in the situation.  The one that sometimes really gets me is “You teach people how to treat you”.  I would much rather see myself as being put upon, a victim of someone being mean to me rather than acknowledging I am part of the problem.  Ego wants me to keep seeing myself as a victim, it is part of her power and hold over me.  Thanks to Eckhart Tolle, I am now a lot more aware and working on putting her out of business.

I’m not sure at the moment where the idea of a gift in RA came from or when, it has been growing slowly in my mind and doesn’t seem so weird and far fetched any more.  One of the affirmations I have been using is “I am willing to know the truth about myself”.  I have always been scared to know because I was sure it was horrible and ugly.  But as I told my sister this morning, I am beginning to see myself as a nice person.  I am working on loving myself, not in conceit or superiority, but loving, accepting, approving and trusting myself – I want to know who I truly am.

Now I realize I have been on a journey and my life experiences and the people in them were and are there because they can teach me about parts of myself and learn to know myself from the inside.  One thing about getting older is that a lot of the stuff that seemed so important really isn’t.  I am less concerned about what people think and more interested in what is true for me and trusting the Universe takes care of me.

Lies. Damn lies and whoppers

March 26, 2010

In the last few years I have been turning my attention inward instead of  just concentrating on the physical.  For the first 35 years of RA, I spent my time looking at how to get rid of the pain and inflammation, then looked at causes other than virus or biological.  It hasn’t been an easy process because I have to take responsibility for much of it.  To quote Dr. Phil:  “You can’t change what you don’t acknowledge”.  It is so much easier to see myself as a victim sideswiped by RA for no reason – time to look deeper and see what has been going on.  One thing I have learned that was a surprise, my body is my healer, not my enemy.  All this time I felt she has betrayed me and made my life so much more difficult.    At last I am beginning to understand she has been shouting at me  to make me listen – too bad I have been deaf all this time.

For so long I felt my body was not really a part of me, more like a shell covering me and strangling me.   I often thought of myself as being trapped in a rusty suit of armor, that it wasn’t the real me.  If you looked inside you would see the real me trying desperately to get out.

I noticed a different train of thought one night when I couldn’t go back to sleep around 3, I had had a migraine and taken one of my bombers that leaves me wide awake until about 6.  I am not sure why I began to think about what is going on and what my body was trying to tell me, then  it hit me, she was trying to tell me Ego is trying to take charge and do her big pity party.  The more I thought about it, the more I wondered if that was the message – by golly, a while later I noticed the headache had gone.  When it happened again, I thought in terms of  my body as my alarm when Ego is trying to take over and I needed to be reminded I am not Ego.  Once again, it meant my headache left.

Hmmm, maybe I am on to something.  This morning I was  back in that boat – I have been having fewer and fewer headaches lately – but now a different train of thought.  If my body has been warning me with headaches,  has she been trying to tell me all these years that Ego is in charge and telling lies, damn lies and real whoppers about me and I have been believing them?  Has she been trying to get my attention with joint problems and pain?  Have I been so unaware of Ego that I just thought that was me living my life?

I have been unsure of myself most of my life – I started wearing glasses in the 3rd when no one else was; I have been Reubenesque all my life – the middle sister between 2 slender ones.  Did I only tune into the negative because Ego ruled and never heard the positives?  I was teased at school about my weight and glasses, last one to be picked for a team, feeling odd man out most of the time and not really a part of a group.  Boy, did Ego lap that up!

I will let it simmer on the back burner for a bit and see what begins to emerge.  I see there is a lot more to my early history as an influence on how I see myself – Carol Tuttle’s book “Remembering Wholeness” has really helped me see what is going on.  There is definitely more going on inside me and now that I have set an intention to know the truth about myself – sometimes a scary thought – it may be easier for me to be more objective than I have been in the past.  Maybe deep down my true self is an amazing woman – dare I hope so?

A little history Part 2

March 4, 2010

Since my parents, nor his, would be able to come to the wedding, I asked my Mom to make my wedding dress – you should have seen her jaw hit the floor!  I still have that dress and my veil in a white pillowcase.  Finally it was time to leave and I stopped in San Francisco on my way to Sydney so I could see my aunt and uncle – they had introduced us.  Plus my cousin’s wife was from Hawaii and she arranged with her parents to meet me in Honolulu for a 9 hour lay over before heading on to Sydney.

I will say, on that Sunday morning I arrived in Sydney, I looked like I had slept in my clothes.  He had brought the whole family with him – his Dad’s first cousin – and all I could think was I was with him again.  Unfortunately he left the next day to give finals and then would be back a few days later.  So there I was, everyone had left for school or work and I was left with Angel who didn’t speak English and I didn’t speak Armenian or Arabic.  But we did really well making the other understood and those few days while he was gone, I finally found out about Armenians.  It didn’t really occur to me I was in a strange country, with strange people speaking a different language, eating unusual food – I only knew I was without him again.

Thursday night he came back from the small town and we prepared for the wedding Saturday afternoon.  It was a lovely sunny, Fall day and I remember being ready before anyone else – I looked out the front window thinking “This isn’t how I pictured my wedding day”.  We had about 20 people, that included us and the minister.  That evening we took a slow train 450 miles west of Sydney to go to the little town where he was teaching.

We had a very small flat, no heat or air conditioning and where everyone knew everyone else.  To be considered 1 of 2 American couples, we definitely stood out.  We were both really home sick for the States, it took us a year and a half to save the money to come back here.  I had never been that far away from home but because we only had each other to depend on, we developed a closeness we might never have had if we had stayed here.  Being in a third country made it easier because we both were dealing with a strange place rather than only one of us.

There was a lot of stress all the time we were in Australia, then stress coming back because of immigration – he had applied for and received a permanent residency visa, but I didn’t relax until we were several miles from L.A. airport.  We settled in San Francisco Bay area and about 2 months after we were back, I was putting my coat on after working 12 to 9 at a department store.  My shoulders hurt so much and that night I couldn’t get comfortable, it was as if someone was boring holes in my shoulders.  The next night the same thing happened and I knew something was wrong since I couldn’t raise my arms higher than my waist.

I went to my aunt’s doctor and was fortunate to be diagnosed right away.  He told me I had Rheumatoid Arthritis and I said “Fine” as I went along my merry way – I had no idea what it was.  In the past 38 years I have learned a lot more about it than I ever wanted to know.  I am blessed with a really great husband, I know he could have left after I was diagnosed – we said for better or for worse but didn’t expect worse after just a year and a half.  There have been husbands who have left; I can’t imagine how that would feel.


Backstory – why not me?

February 28, 2010

To know more about who I am and what qualifies me to write this blog, I thought a bit of backstory might answer a few questions.  I mentioned I have had  Rheumatoid Arthritis for 39 years – in November 2009  it was 39 years that I was diagnosed.  Whether this is a reason to celebrate is still open to question.  I was fortunate that I was diagnosed right away, in 1970 it was not always easy for women to be able to be diagnosed that soon.  I met many women who had not been taken seriously, they were told they were just depressed or   to find an interest or that they were imagining it.  Yet a man could go in to see the doc and be taken seriously right away.

Also, the usual treatment was to start with aspirin and slowly work up the pyramid to gold injections.  From what I can see, many rheumatologists now start right in with Methorexate, and more heavy duty drugs to turn off the inflammation.  I find myself looking at other ways that are non-pharmaceutical since my body has had so many drugs over the years.  So far I haven’t found anything that really makes a difference, though I have many more possibilities to explore.  When I find what works, I will be happy to share it – though with body chemistry and course of disease different for everyone, there is no one answer for everyone.

I have also learned that much of RA comes from within, that means attitude, outlook and perception.  The one thing I have learned is that it is not necessarily “Why me?”, or even “Why not me?” that is important. It is the “How do I deal with it” that is important.  Even though I tend to feel I whinge about it all the time, people often tell me how amazed they are that I have such a positive attitude.  Obviously the inside feelings don’t show on the outside.   I have come to understand that the Universe is not out to get me, instead the Universe supports me and takes care of me.  There is a gift in RA, I am l working out what it is.  If anything I have had to deal with can benefit someone else, then that is something very positive coming out of something that sometimes feels very negative.

I consider myself an expert on my own RA, not for anyone else.


Hello world!

February 25, 2010

I have been thinking about writing this blog for several weeks, several times almost sitting down and actually writing it.  Then I think it is more important to check email and take care of clients and orders before I write.  I keep thinking I need to have a big block of time so I can fully concentrate on the blog.  Well, here I am several weeks later finally putting finger to key.

You are wondering who I am, what is going on and why would you be interested in what I have to say.  All good questions – when I have a good answer I will be glad to let you know.  The short version is that I am a 63 year woman who has had Rheumatoid Arthritis for 39 years and I am looking for the root cause of it, why I have it and what can I do about it.  But recently I read somewhere that it is important to find the gift in a situation – “Yeah, right – some gift!”  But the more I thought about it, the more it began to make sense.  A friend was telling me she had broken her leg and it was the best thing that could have happened because it took her out of an abusive marriage – she knew her husband would finally kill her.  Wow!  A bit dramatic one might think, but not necessarily.  How often have you heard people say the divorce was the best thing to happen, or in my Dad’s case, being make redundant at 56.  At the time it doesn’t feel it is such a gift or  positive thing, so often it takes time and objectivity to look back and trace how that upsetting situation became really positive.

So now I am wondering, wouldn’t it be fairly obvious after 39 years that I could see the positive in RA?  Or is it that I have decided somewhere deep inside not to look, the prospect too scary for some reason?  Or is it that to gain perspective, one has to be away from the situation for a while?  Good luck with that since the RA comes with me everywhere I go, in everything I do.  So now the question is – how do I create that perspective?  Another good question without even a lousy answer.  I seem to have nothing but questions about this.

The good news is all the interesting books, people and ideas I have discovered on my quest to find the gift in RA.  This blog is about that, what I learned, am learning and also some things that never occurred to me before because there is so much I still don’t know.  I have learned it is no biggie to say I don’t know.   I now know I don’t have to have all the answers, that it is not a reflection of how smart, savvy, distinguished or with it I am.  It only means I don’t have to pretend I know it all, I am open to learning and exploring whatever comes my way.  I think of this blog as a journey of discovery and learning what works for me.  If along the way it is helpful to someone else, then it is a success.  It is not a whingeing session for me, there has been too much of that in my life and it is not particularly productive for this purpose.  Not to say I don’t have my own periods of whingeing and a bad case of oh-poor-me-osis times when I am the worst off person in the world and no one has it as badly as I do.  And please don’t tell me about someone who is worse off, that devalues and dismisses me as well as making me cranky.  I know it is meant to help, but it doesn’t.  I have many times when I read about or meet someone who is dealing with such stuff that I realize I don’t really have anything to complain about – I need to come to that conclusion myself.

I am working on gratitude – another one of those “Yeah, right!” feelings because I couldn’t think of anything about RA to be grateful about at all.  But I have finally figured out it is not so much the RA to  think about in terms of gratitude; instead I am grateful for the systems that are working well – digestive tract, bowel tract, respiratory, brain functions, circulatory – you get the picture.  True the joints, muscles and tendons have their problems, thank goodness everything else in working well.

See you next time.


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