Archive for November, 2011

A Confession

November 26, 2011

When I was a sophomore and junior in  high school, the refrain was constant -“What do you want to do? What do you want to be?  You have to prepare for college”.   Underlying that message was another one – maybe I was the only one who heard it – “You have to decide now, it’s for the rest of your life!”.  I didn’t know what I wanted to be and the thought of picking the wrong thing and being stuck with it for the rest of my life scared the pants off me.  Maybe that’s why I have never really been able to decide what I want to be when I grow up.  I went to junior college to be a teacher – I chose it just to get them off my back.  Later I was attracted to commercial art school and went for two years – I didn’t go the third year and I never worked as a commercial artist because I didn’t really believe in my creativity or talent.  There, I said it and the world hasn’t collapsed!  I do have talent and creativity, only took me 55 years to say it out loud.  Then I went to work for Boeing as a tech illustrator – the art school figured anyone working for Boeing was prostituting their art.  Then I met Eddie and I got married – I made the safe choice.  Except it wasn’t so safe because I didn’t feel secure; I worked at the beginning of our marriage in Australia and when we first got back to the States.  Then I was diagnosed with RA and working wasn’t really an option.  Plus I didn’t want to be a department store salesclerk all my life.  The confession – I realize now I was hiding behind RA so no one would expect much from me.   For some people who know me, this is no big news flash.   You are wondering what I was hiding from – it was the world.  Of course I am the only one in history ever to do this!

From the time I can remember, the message was always “The world is a scary place” from parents, the news, society, school – everywhere.  That made me afraid and very unsure of myself.  I didn’t feel I had any abilities or talents, what could I do in the world?  So all those messages in high school certainly didn’t help.  The other message was to make sure to be safe and secure before venturing out, not conducive to taking a risk.   So I was scared to  move from my safe little cocoon.  Yes, I did go by myself to Australia to get married – Mom and Dad at one end and Eddie on the other.  Most my travels and adventures have always had someone on either or both ends, I wasn’t all on my own fending for myself.  That was probably what I needed to learn to be self reliant and trust myself but I was too scared to do it.  I will say that having Eddie travel a lot helped me to be more independent because I had to take care of things while he was away.  A friend really had to point it out to me because I didn’t know it.

All these years I felt I really had to go out and find a job, except I didn’t think I was qualified to do anything nor did I have confidence in my abilities.  It was easier to do volunteer work because  volunteers are always welcome.  I could make my own hours and travel with my husband when opportunities arose.  When it came to RA, I felt myself a victim for along time; an innocent bystander sideswiped by RA for no reason.  Someone thought it was payback for another lifetime – I decided I had better have had one hell of a good time if this was payback.  I pictured myself trapped in rusty suit of armor – the outside was not me.  If you looked inside, you would see the real me trapped and not able to get out.  Great images for a victim.

The question is – am I a victim?  No, I have learned it is simply cause and effect, no blame.  It has flitted through my mind that I have done this myself, but only for an instant because it is too painful.  Also, another club to beat myself up with and make me feel even worse.  Thank goodness it wasn’t something terminal!   As I look back over my life with RA, there has been a lot of positive from it.  I made speeches and taught classes for the Connecticut Chapter of Arthritis Foundation, quite a few times I knew when I did but I have decided that I was most effect going along doing my thing and being myself.  It isn’t necessary for me to always know I helped someone, that leads to a swelled head and no longer effective.  There must be something in this I was meant to do and be, though it has been very hard to see it from this angle.

My goal now is to still be effective and help others in different ways without RA.  As always, I am a work in progress.

End of the Line

November 19, 2011

About a year ago last September I saw an ad in the newspaper for a study for people with Rheumatoid Arthritis – that would be me.  I saw the study doc and he decided I fit into it, so I began with their capsules made from hops.  After a bit he decided he wanted me to go on their medical food – it is 2 scoops of a powder in 8 ozs. of water whizzed in a blender with fruit.  I started adding some liquid Vit D and liquid Calcium to it as well as a bit of yogurt.  It was my breakfast every morning and it made it easy because I always knew what I was going to have/  There were several flavors – they were okay, not repulsive but not something I would recommend.  Then I was to do a second shake in mid afternoon, mostly just the powder and water.  Later, just before my birthday he decided to check to see if I had any gluten problem – the test showed I was gluten sensitive.  So I started on a gluten free diet along with the capsules and powder.

Another part was to write a pain diary every day – no real instructions so I had to wing it.  I used a spiral bound notebook that was 8 x 51/2, it’s a handy size and comfortable to write things in.  I decided to find some clip art figures, side, front and back views; it was only a few months ago I realized my computer could flip the side view so I then had left and right sides.  I used double sided tape, then later a glue stick to  paste each figure down.  Since the figures were fairly nude, I was able to draw on the place that was hurting – often it was the same thing many days in a row.  Now what I wrote wasn’t technical or scientific, it was simply what I felt, what I was doing and what was happening.  I made comments and sometimes my frustrations were quite obvious in the terms I used.  The first time I showed it to him, he was a little surprised – not sure what he was expecting.  I continued to write – there was one period of time early this year when I wasn’t able to write at all because of the pain and problems with my neck and shoulder.  By the time I was finished, I had 2 complete notebooks filled and bulging from the pasted figures.  When I gave them to him on my last visit, he was quite surprised.  Whether it has scientific value is questionable, but it may be entertaining for him to read.

There was no one else on the study who had had it for 40 years as I have, there were different lengths and probably gave him a good selection to study.    I would go to see him every 4 to 6 weeks after I was established on the capsules and powder.  One frustrating thing was the set of questions to answer every time I went in – my answers really didn’t ft the questions.  If I were doing it from a patient point of view, it would look a lot different – but no one asked my opinion, probably just as well.  They said it would take about 15 minutes to fill then out – took me half an hour.  I had to go to the research center early so I could do the forms before seeing the doc – that last few times they gave them to me to fill out before I came the next time.  Still a pain to fill out but I didn’t have to go so early.

He would occasionally do blood tests and at one point decided I needed fish oil.  So I was given a bottle of their fish oil to take every day.  One day I mentioned I was having a hard time finding something gluten free when I was out somewhere, I didn’t really want a big lunch, just something to help the hungries.    So he gave me some gluten free bars I can carry n my purse that fill me up while I am out and I don’t get a headache because I didn’t have anything to eat.  Often I would leave the center with one or two large bags of products that must have cost at least $250.  All I had to pay for was my gas and the toll on the bridge.  I don’t know how much the whole thing cost, I’m just glad it wasn’t on my nickel.

I’m sure he found me a bit  frustrating at times – the week after I started the study I fell and really hurt my knee.  Later I had some difficulty with the coated product and I think there was something else.  So my study wasn’t all that smooth.  I did lose 13 pounds but then gained back 2 – not bad, I would rather lose than gain.  For a while I wasn’t having hot flashes any more, when I went off the powder and capsules, I now have them again but rather mild.  There was no dramatic change, but I am moving a whole lot better than I was a year ago.  He decided to have me go off everything and see what kind of a difference there was – not much of anything.  So last Friday was my last visit for this particular project.   He did say he would contact me if something else came up that he thinks I would be a candidate for, so maybe it isn’t a complete washout after all.

I will miss seeing all of them at the center, everyone was friendly and fun to be with – though Dr. Bob took a while to loosen up and relax a bit.  So it is all over, it was kind of fun, interesting and if in any way I was of help for the study, that is great.  I am glad I did and look forward to seeing what happens in the future.

Just For Me

November 15, 2011

I decided today was just for me, so I went to the spa – was there just as they opened at 9.  It has not been easy the past week and I needed something to take care of myself – some major self care.  I went by myself which was fine, it was my day and I figured if I met someone and talked to them, great.   It is interesting to go there, it is no clothes, women only.  At first the idea of not wearing clothes in front of other people is a little uncomfortable – something in me says I should have a slender body.  Well, news flash, I don’t.   But then, no one else does either and very shortly it is a nonissue.  I will admit to being fascinated by the tattoos some women have – from a small one to some major art work on a large area of their body.  But essentially we are all the same, just arranged with varying degrees of amounts in places.  It reminds me of swimming in a way, I never looked in the mirror and just concentrated on what I want to do.  What I found was me spending the first couple of hours thinking “This is just for me, I don’t have to think about anyone or anything else”, etc.  After a bit I began to relax and concentrated on centering and grounding myself.

I started in the 97 degree pool; I sat in front of one of the jets and it began to reverberate inside my chest,  a rather odd, though not unpleasant sensation.  Then I went to the 104 degree whirlpool for awhile.  As I was sitting in the whirlpool, I suddenly thought of my sister Ellen’s paintings of tiled rooms they were absolutely gorgeous with blues, greens and all kinds of combinations of both. I am not sure they were like Roman baths, but if I remember correctly, they were like this spa.  As I looked at the women moving around, I suddenly thought of them as Ruben’s women.  He painted women in the 1800’s who were fair skinned and well upholstered – like me.  After a certain point I get really hot, so then I go over to the 60 degreepool. It is really cold as I put both feet in, but then it isn’t too bad – I have worked up to standing wait deep for a few minutes..  One woman told me that the old Korean ladies go back and forth between the hot and cold pools – that is what keeps them moving comfortably.  Next time I work up to my chest – one day I even stay for 5 minutes!  I decided to try the steam room – wow! was that hot, especially on my face.  I wasn’t there very long, I could feel the sweat pouring down my face and I could taste the salt.  I had a rinsing shower, then headed for the tea room.

I brought a book with me and had paid the extra $5 for unlimited tea.  The tea room is small with lovely music playing softly.  I love their jasmine tea, doesn’t need sugar or anything.  I was the only one there, so I enjoyed a quiet hour with tea, my book and my own company.  After that I did some more hot and cold pools, then I went into have lunch.  They have gluten free things, though I couldn’t drink the barley tea they serve.  I asked if I could bring my tea cup in filled with jasmine tea – no cups and saucers but I could take one of her cups and have jasmine tea.  I don’t know how to pronounce my lunch but it was delicious – brown rice, all kinds of vegetables, chicken and a fried egg on top. It came in a hot iron bowl and the rice at the bottom had a bit of crust on the bottom.  It looked like quite a large bowl, I was surprised to find myself finishing it.  I worked with chopsticks for awhile but my hand got tired so I used the spoon for the rest.  I also read with lunch and quite enjoyed myself.

I had one more go at the pools – I would go use the rooms but every one of them – charcoal, salt, etc. -all require you to sit or lie on the floor – not something I can do easily.  Yes, I can fall down with no problem,but getting up is quite another story.  That’s all right, I had quite a nice time  with me, myself and I.  I was really feeling mellow by then – when I came in the morning I wanted to stay all day and not go home – but I found by 2,  I was ready to come back.   Fortunately the traffic was light and it all worked out quite well.  I definitely will be going back again and again.  Not bad day for $40 – of course if I do the body wrap, the scrub, massage, body waxing and the moisturizing it would be a whole heck of a lot more.

What Are Boundaries?

November 13, 2011

The past few months I have been working on understanding boundaries, how that looks and feels for me.  I have spent my life feeling as if I have no boundaries, that somehow I am not eligible or worthy enough to make them and enforce them.  It seems everyone else has them and quickly lets one know when one or more have been crossed.

I checked out Wikipedia and found this:

Personal boundaries are guidelines, rules or limits that a person creates to identify for him- or herself what are reasonable, safe and permissible ways for other people to behave around him or her and how he or she will respond when someone steps outside those limits.

‘Personal boundaries define you as an individual. They are statements of what you will or won’t do, what you like and don’t like…how close someone can get to you’.

There are four types –

  • Soft – A person with soft boundaries merges with other people’s boundaries. Someone with a soft boundary is easily manipulated (I looked that one up and found it most interesting!  Would make a good post for another time.)
  • Spongy – A person with spongy boundaries is like a combination of having soft and rigid boundaries. They permit less emotional contagion than soft boundaries but more than rigid. People with spongy boundaries are unsure of what to let in and what to keep out.
  • Rigid – A person with rigid boundaries is closed or walled off so nobody can get close to him/her either physically or emotionally. This is often the case if someone has been physically, emotionally, psychologically or sexually abused. Rigid boundaries can be selective which depend on time, place or circumstances and are usually based on a bad previous experience in a similar situation.
  • Flexible – This is the ideal. Similar to selective rigid boundaries but the person has more control. The person decides what to let in and what to keep out, is resistant to emotional contagion and manipulation and is difficult to exploit.
     HMMMM.  I can see I am in the soft category – not a pretty picture is it?  At this point I don’t think I am completely soft, maybe working toward spongey or just soft/spongey and working my way to flexible.  I would much rather skip rigid, reminds me too much of the recent occurrences of the term inflexible.  That is another story.
The more I think about it, I do have certain boundaries instilled by my parents – integrity, honesty, respect for other people and their property, doing what I say I will do, being on time (bad case of train fever) not deliberately hurting people (I know only too well how that feels!) and of course, always following the rules.  I was brought up to be a good girl – it has stood me in good stead a lot of times, but it has also has made it difficult to be creative and free.  Yet, I have also been creative in spite of it, usually I have to really work at letting go of “how it is supposed to be or look”.    I had no guidelines for writing my pain diary – what was I supposed to do?  Well, I found clip art figures of front, back, left side and right side and pasted those in for each day – then drew on them where it hurt.  Then I wrote out what the day was like and how I felt – not scientific, more narrative with personal comments.  I showed it to the doc after few weeks – looking for approval I had “done it right”.  It may not be scientific, it is certainly my journey and my feelings.
I just realized that not having boundaries works side by side with giving away my power.  If I don’t value myself, decide what I will or will not allow people to do and be so anxious for approval/validation as well as have everyone like me. it isn’t any wonder I don’t know boundaries.  I have begun to have much more confidence in myself – many people tell me I come across as very confident – which means I see myself as worthy of boundaries and respect.  I am working through the confusion to have a clearer picture of how boundaries feel  and how they look for me.  I have noticed often over the years that when I have a picture in my mind of something, it finally makes sense to me.  If I described that picture, it wouldn’t make sense to anyone else.   That picture brings up my “I know that I know” – others may call it an AHA moment, it’s simply when I finally “get it”.  I suspect there are some more pieces that need to be put into place, like putting a jigsaw puzzle together without a picture.  A challenge but definitely doable.
I may not have the complete answer yet, but I am definitely making good progress toward my goal.  let’s face it, I am a work in progress all around.

I Want to be Musetta!

November 7, 2011

I was listening to my CD in the car “Puccini Without Words”.  I love his music, it is so beautiful it hurts.  As I was riding along in the sunshine, I suddenly realized how much fun Musetta always had, whereas Mimi had a periods of strom and drang. Ever since my parents gave me a 2 record set (yes, it was that long ago) of Puccini’s “La Boheme” ( The Bohemians).  I played that record set until it had deep grooves worn into it.

The story is set in Paris in the period around 1830.    There is a poet, musician and artist living in a garret, all with no money.  They decide to go out and Rudolfo stays behind to finish his work. It essentially focuses on the love between the flower maker called Mimì and the poet Rodolfo. They almost immediately fall in love with each other, and he takes Mimi down to meet his friends.  Musetta, formerly Marcello’s sweetheart, arrives with her rich (and aging) government minister admirer, Alcindoro, to whom she speaks as she might to a lapdog. It is clear she has tired of him. To the delight of the Parisians and the embarrassment of her patron, she sings a risqué song (Musetta’s waltz: Quando me’n vo’ – “When I go along”), hoping to reclaim Marcello’s attention. Soon Marcello is burning with jealousy. To be rid of Alcindoro for a bit, Musetta pretends to be suffering from a tight shoe and sends him with it to the shoemaker to be fixed. During the melee that follows, Musetta and Marcello fall into each other’s arms and reconcile.

Rodolfo later wants to leave Mimì because of her flirtatious behavior – the shy flower maker certainly had blossomed.  However, Mimì also happens to be mortally ill, and Rodolfo also feels guilt, since their life together likely had worsened her health even further. They reunite for a brief moment at the end before Mimì dies.

I always wanted to be Mimi and fall in love at first meeting  It does become a little heavy and unfortunately she dies – not quite an ending I want.  I knew all the words to the arias, except for Musetta’s Waltz, not really sure why because it is quite lovely.  She has a small part but each time I hear her music, it is lighthearted and gay – she has such fun and she is the one who decides where she goes, what she does and who she sees.  After all, when she came across Marcello again, she knew she had the power to attract  him again, no matter how much he denied he was interested.  She had no compunction about dumping Alcindoro and later  fought with Marcello when he started being controlling again – all the reasons they split the last time.  She is a bit of a bad girl  in a fun way.

I have been feeling my bad girl trying to get out – I have never acknowledged her before – I was raised too much of a good girl to even think there could be a bad girl who wanted to come out and play.  I realize a lot of my life has been looking for approval and permission to do something, make sure I am “right” because I didn’t trust my own instincts.  I gave my power away since I can remember – I didn’t know I had power or that I could use it because I didn’t think I was worthy, that I had a right to my power.  There is Musetta, doing what she wants and what works for her, not caring about other people’s opinion.  I wonder why I never really paid that much attention to her all this time while I have been enjoying the music.

I’ll be honest, I don’t know where to take this post – it may just be a short post and let it go at that.  Usually I start with something and the next thing I know, it is 800 or 900 words later and I have a blog post.  Well, there is no ironclad rule that my posts have to be a certain length, they just begin and end when I am finished.  It is interesting because I feel as if I have spent my life living by other people’s rules; to suddenly think in terms of my own rules or no rules at all is a fairly foreign concept to me.  Those rules were safety and deciding whether it is no rules or my own is new territory.  However, I am more and more ready to navigate that territory and see what I find.


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