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Posts Tagged ‘rheumatoid arthritis’

Is It Pain?

January 27, 2013

Interesting day Friday. I went up with my other half at o dark 30 because my friend Char was having a birthday lunch in Edmonds and it seemed silly to take two cars up the same direction. I stayed at the Future of Flight until about 9:30 – I found my little terrace upstairs by the entrance to the Stratodeck – almost said hollow deck. It is warm and plenty of light plus fairly quiet. I read my book because my hands, wrist and shoulders have been very uncomfortable because I have spent a lot of time on the computer working on my blogs. I have giftofra.com and now I made a new one called catlessinseattle.com – one is about finding the gift in Rheumatoid Arthritis and the other is about cats. I planned to write about my two cats Muffet and Tiger, about my Mom’s cat Josephine and also about a friend’s cat Subaru.

It was probably a good day to up north so I wouldn’t be writing on my blog or using the computer very much. I went to three stores and walked quite a bit – oh were my knees, ankles and feet sore and uncomfortable. I was glad to sit in the car for a while. I was really stiff when I got to the restaurant, but I had a different thought about it. I had been listening to Dr. Pat and she had some people on who are doing a 5 day workshop – running the bars and then other things for the other 4 days. I would love to go, unfortunately it is a bit spendy .

One of the people talking was Ricky Williams, a well-known football player who talked about when he was playing. He would be in pain in practice as well as playing, so he was taking pain killers a lot of the time. What he finally realized was that he labeled it pain, locking in the idea that it is pain. It was the idea that “I have pain, what can I do to get rid of it” thinking. Then he changed is thinking to “What is my body telling me it needs?”. Pain is your unwillingness to listen to your body. Words are powerful and thinking in terms of intensity of change which you asked it to do, your body is stretching, changing and elongating to create what you asked it to do.

So I thought about that as I was driving to Edmonds to meet Char and Joyce. I had to concentrate because I have spent the last 42 years thinking “Pain, how do I get rid of it” and certainly feeling a victim and many cases of oh-poor-me-osis. Now I realize I have implanted in my mind. Takes some getting used to, so now I realize I have not been listening to my body at all. I will admit I was very uncomfortable all day and evening, sometimes a new way of thinking takes some time.

I had gone up with Eddie and I was glad he was driving, I think I slept most of the way home.

I had a lovely time with Char and Joyce – though I still let Char know she is a year older than I am. Actually, for 13 days we are same age. That’s only because I went to school a year earlier that every one else when we moved to Seattle. Mom and Dad say that I made so much fuss when I saw Ellen go on the bus to school to see where she went, they finally allowed me to go to. Everyone in my graduating class was a year older. But I would have missed out in knowing Char in 9th grade. Who knows how my life would have gone if I had been in school with people my own age.

Yesterday I was amazed at how well I felt – not much discomfort, though walking through a couple of stores did make my legs hurt a bit. I will admit to taking an extra prednisone when we had dinner, plus some Advil before bed. I had wondered how I would be today because usually the second day is the worst. A little stiff but otherwise doing rather well.

Since I didn’t visit Mom on Friday afternoon, I went yesterday while Eddie was doing the laundry. She was doing pretty well, she said Elizabeth called earlier. When I was talking to Judy, she said she calls everyone Elizabeth. Interesting because that is my legal name. Yet on Tuesday she wanted to introduce me to Judy and said I was her cousin Betty. I have finally realized correcting her just agitates her and it really doesn’t matter. So for a bit I was Betty.

Tags:Health, Muffet, rheumatoid arthritis, Ricky Williams, Seattle, Thought
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RA Consequences of the Move

October 21, 2012

When I wrote the post yesterday, it was mainly about the move, Mom and the aftermath. I can’t believe I forgot to mention that I was miserable because my right side was so painful in the neck and shoulder. It was as bad as last year after I spent so much time on the computer doing quotes for a client. I didn’t do much in the way of lifting or doing things, though I suppose not wearing my collar while I worked on the inventory lists on the computer might have done it. At times it was like an icepick in my shoulder, I couldn’t move any way that wasn’t uncomfortable – even the hot tub at the spa didn’t really do it. My knees were also very unhappy – they have been uncomfortable for awhile – could it be The Preparation from my Tai Chi lesson? I was really hurting when I was taking stuff to the garage to put in the car.

So not only have I been exhausted, I have been in pain as well – let’s face it, that doesn’t help with energy. Stress causes difficulty and flare ups; that means the body is using all her energy to fight the RA and flare up. Not much energy left for anything else. I have done the things I have to, some things for myself – like Olympus Spa – and on Monday I went to see Dr. Cheryl, my chiropractor. She was able to take most of the icepick out of my shoulder, so I was more comfortable. I saw Debye for my massage and learned I have some emotions stuck in my abdomen. People have told me there is a lot of emotion connected with this move and the whole situation – so far I haven’t really identified it. At the moment I am not ready to go there – though I was in the bathroom a few days ago and had a knowing there is more emotion below the surface than just the feelings of frustration, resentment, anger, etc, from the past few months and years.

I went to see Mom on Tuesday, she was sleepy and not quite with it, so I wonder if this has tired her out a lot as well. I saw her again on Friday and she was more alert and with it. However, both times she asked why she is there and if she has to stay. I told her it was her home now and she is safe as well as taken care of by the caregivers and Didi. I have no answer for her other than that – I know I can put myself on a guilt trip and although I am not boarding that bus, I felt a foot or two on the step. I know it has only been a week and a half, it does upset me to have her ask. She keeps asking about her parents, if I have seen them. Then she asks if they are dead – it seems as if it is the first time she heard it. I tell her they are watching over her and preparing a place for her, they are waiting for her. Then she wants to know how she can get there – all I can tell her is I don’t know, no one has come back to tell us how it all works. I don’t know if that helps or not. I am wondering if my visits are making harder or not. Apparently she was asking about me and she was glad to see me. She says it is a nightmare there, but they are good to her – how accurate are her perceptions? I need to ask Didi what works for her about visits.

I know this is stress for me, not good for the body, mind or spirit. Several people have told me I have done a wonderful job taking care of Mom as long as I have. Here is that negative take coming up – I didn’t do it to the absolute nth degree, I have be irritable and have yelled at her – not patient enough. I have to stop and tell myself taking care of her has come to affect my health and my marriage, I have to protect myself or I will be back in rehab (if I am lucky!) For so much of my life I have felt responsible for the world, of making other people happy at the expense of myself. Now I am learning to switch gears to take care of myself first so I will have overflow for others. Are they childhood messages or the ways a middle child operates? Probably some of both – my older sister Ellen would tell me “Ditch it, girl!” in no uncertain terms.

As a result of the shoulder and neck pain, I haven’t been able to really use the computer or pen to write about all of it – it really bugs me because it is one of the ways I can release and clear out a lot of stuff I don’t want to hold on to any more. I also have projects I want to work on and there is my business that has languished for two years so that there isn’t much of it left. I wonder how it will feel to be finally rested and have energy – it is been so long. Certainly it is easier to do things with a lot of energy – I just cleaned the new bathroom, had to rest, now it is time to do the floor. Imagine doing it all at once and not having trouble bending and reaching, plus have the strength and elbow grease for those places that really need it. I am looking forward to that!

Tags:Energy, guilt, Health, Mother, pain, rheumatoid arthritis
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Dementia and RA

September 16, 2012

I have been wondering over the past few weeks and months as my Mom has been slowly going deeper into dementia – how much has taking care of her and dealing with the stress and frustration impacted the RA and my body. What differences will I notice once she is established in a good adult family home? I know it means there are still things to take care of, to keep watch over, etc. Will there be less stress, less pain and less difficulty moving? One thing I think will be better is that I will finally be able to rest and have some energy again. I have been feeling bone weary for quite awhile and no way to really sleep well at night to re-energize. I’m not sure how long it will take to really rest, but not having the day to day difficulties and frustrations will certainly help. Also knowing she won’t be walking around and suddenly come into our room and wake us up out of a sound sleep will help a lot. A few months back we were sound asleep and suddenly she came in at 2 a.m. flashing a flashlight in our eyes. She kept asking “How do I get off this boat!”. That came out of left field and I am happy to say she hasn’t done it again. It may take some time but I won’t be wondering if she has fallen in the middle of the night or during the day so I have to call those very friendly fellows from the Fire Department to get her up on her feet again. And it will be so nice not to have to suddenly cancel my life because she needs something.

I have had neck and shoulder problem since March of last year – at times it is better and other times it really hurts. I tend to say it is computer and too much mother – there may be more truth in that than I realize or would want to admit. I know my Mom can’t help what dementia is doing to her; I have probably not handled as well as I could have – it has been a learning experience for both of us – I wonder how much has registered with her. I am not going to second guess myself and beat myself up because I wasn’t perfect – I did the best I could with the knowledge I had at the time. It is constantly new territory, sometimes I do well and other times I have allowed emotions to rule; doesn’t come out that well when that happens.

I suspect I am tight in my muscles, tendons and ligaments as well as in the joints or how I hold myself. I feel as if I have spent my life “bracing for the onslaught” – though I can’t honestly remember when I first felt that. So I have probably held myself tightly most of my life, definitely not conducive to relaxing and being at ease. Lately I have noticed I get a bad pain in my left hip – I can tell it is from Mom and I have allowed her to control my choices. Also, the left is the feminine side – go figure! She has been a major, controlling figure all my life and it isn’t easy to change gears at this time of life. But By George, I am doing it! My Dad would say “By The Lord Harry!”. I was very pleased and flattered that Debye tells me how she admires me for doing this work at 65 – too many people have given up by then and think themselves too old. I decided when I turned 60 that the last third of my life was going to be the best – I knew it meant changes and as uncomfortable as it has been at times through Ike Pone, massage with Debye and the other things I have done and learned, it has been worth it. I have this need to understand and “Know that I know” who I truly am and love, accept, approve and trust myself completely. I am getting there but I expect it to be a life long journey – I am a work in progress.

I will admit I feel I have been doing this with Mom for so long that I don’t remember what life has been before coming here 10 years ago. Any more than I can remember age 23 and younger when I didn’t have RA. It feels as if I have always had it; the difference is that I am not seeing myself as victim any more – an innocent by standing minding her own business and sideswiped by RA. Strangely enough, I am learning that it may not have been something that started in this lifetime, that it has been from a past lifetime. In my massage with Debye and also time with Monty I have learned I was a Roman soldier in another lifetime. Thursday Debye had a picture of his leg hurt – I could picture it myself. Yes, I know it sounds woo-woo and goofball to some, but in some ways it makes sense to me. As that soldier, I imposed my will on others and there has to be an energy balance for that – karmic balance. I am still learning, but in many ways a lot of what I am learning gives me different angles on having RA. I am determined to understand what happened and is happening as a way of creating a healing. Call me crazy if you want.

Tags:dementia, rheumatoid arthritis, Stress
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Rehab and RA

May 4, 2012

I had quite an experience while in rehab for 8 weeks – unfortunately when I was in the hospital under the influence of pain killers and who knows what else, it took a while to realize I had missed some very important information. The surgeon apparently told me he was stopping my Methothrexate so the wound would heal faster – I don’t remember hearing that. I had not had it for a week when the fall happened and then about 2 weeks later I woke up one morning with the most miserable flare up I have had in a long time. When it finally penetrated that I hadn’t had metho for 3 weeks, I kept asking questions and let them know I was pissed off. Finally I got the message and realized I didn’t remember anything about it. So not only was I constantly telling the therapists that I was worried about not messing up my shoulders and hands, then I was dealing with a flare up. Now I will commend the therapists for working with me to prevent as much problem with those parts while I was learning to walk with toe touch. I could only put my toe on my right leg down to balance but not put weight on it.

I know there were many times when I did put a little too much wieght, it isn’t easy not to do it. The weight had to upperbody strength and I will confess I didn’t have much at the time. I was given exercises for all parts of my legs, for my arms and anything else they could think of that could be done in a wheel chair. I was having such a hard time with the toe touch walking in a regular walker, I was determined to master it if it killed me. It was probably getting on to almost 5 weeks before I started get the hang of it – I knew that because I didn’t hear the therapist checking weight bearing, reminding me of toe touch, saying good step more often and of course, less reminding me of “spaghetti leg”. What bugged me was the comment that once I learn how to do it, I won’t have to do it any more – I kept wondering why I was doing it at all if I wasn’t going to need it. It simply meant that when the surgeon gave me weight bearing status then I could walk with both legs and not deal with toe touch.

I was so appreciative of one of the occupational therapists, Carol, for giving me hot packs for my hurting shoulders and hot paraffin for my hands to elp relieve some of the pain. They were all very caring and concerned about me – as they are of all their charges – but were also rather hard assed about things I could do I wasn’t sure I could. I remember when I first stood up – I was scared of so much and Tony was there to keep me going and was very encouraging. I slowly began to walk a few steps and of course there were always exercises for muscles, tendons and such. I was so proud of myself the day I went around the circuit at one go – 60 feet. I was really winded when I was finished, plus I had to stop and rest twice. What I found was that each time it was easier and I could go a little farther. I walked around one of the halls next to the gym for quite a few feet – it felt as if I was doing it without a net. They always made sure I had a gate belt on so that they could catch me if I got in trouble; that gave me a secure feeling. I was able to do 130 feet by the time I saw the surgeon the second time – 6 weeks after surgery. He gave me weight bearing as tolerated status, so things got more intense and instead of being in a wheelchair all the time, I used my wheely walker. They decided I could be independent and walk anywhere, plus go to meals. That felt so good, to be able to do things on my own again.

As for the methotrexate, I finally started it again about the 3rd week I was there but it took 4 or 5 weeks for it to kick in again. It seemed to take forever to feel halfway comfortable again, plus my hands developed blisters and new nodules from wheeling myself around. When I first was able to wheel myself, my personal goal was to wheel myself from my room to the dining room. My room was at the other end of the hall and it looked a long way to go. But I worked at it and finally accomplished my goal. Now I will admit when I was having a bad morning because of the flare up, I accepted a push because it was hardest in the morning – it was better in the afternoon and evening. I learned how to turn and few other things, so by week 6 I was going a bit faster than in the beginning.

I will admit to feeling really tired and lousy most of the time, no energy or interest in anything. I was bone weary as well as mentally and emotionally exhausted when I went in, so the surgery and ehab was just more piled on. I have been home a little over a week – well, a few days and now I have been at a hotel for almost a week while the bathroom is being remodelled. Still tired but I was pleased to find on Monday I felt like reading a book again. I wasn’t interested in doing anything for those long 8 weeks, so reading felt so good. It has been along journey and I am curious to see the changes and effects it has had on me – maybe in the coming months.

Tags:flare up, occupational and physical therapists, rehab, rheumatoid arthritis, Weight-bearing
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Not Just My Body

December 25, 2011

I have spent most of the last 41 years thinking about RA in terms of just my body – that is how most of the doctors I worked with viewed it. It gave me a victim mentality, that it wasn’t my fault because I was an innocent bystander being sideswiped by it for no reason. Therefore, I had no responsibility except to get treatment. It never occurred to me it was the Universe trying to get my attention. News Flash!!!

I had a note from the Universe the other day that was really cool:

Young souls use pain to learn how things are.

Mature souls use pain to learn how else things might be.

And old souls, Lee, use pain to learn how else they might be.

T-s-s-s-s-s-s,

The Universe

Of course, Lee, pain is only a choice, among many, for such learning. It just happens to be very popular.

It is only in recent years through personal development have I realized that it is mind, body and spirit. Over the years it has been bits and bobs here and there, then last year I had it full in the face with Ike Pono. This year has really been an eye opener since I have been working with Debye and deep tissue massage. I went to see her to help with the shoulder and neck pain from way too much computer and also waiting too long to see what could be done to relieve it. I finally “got it” that I was holding on to RA; at one of the last Ike Pono weekends Bruce asked me why I has still holding on to RA. It must have been simmering on the back burner for several months because in one session Debye told me I was sending mixed messages about it. That meant I had to look at what was going on inside of me – I realized my identity was all wrapped up in RA and I didn’t know anything about myself without it.

What I learned so forcefully was that I was stuffing down so many feeling of anger, resentment, fear, hurt and who knows what else – all somewhere in my body because I hadn’t expressed it. The first session was just physical massage and boy, was that uncomfortable. The second session I was so surprised to find myself crying – I remember saying out loud “I can’t take it any more!”. Ever since then my sessions have been like that, I find myself crying without really knowing why but I have been expressing and releasing all that junk. It has helped me learn more about myself and who I truly am. My goal for so long is to love all of myself deeply, completely and unconditionally. I am a lot farther along than I was a few months ago. All the things, the people, the techniques, everything I have done and learned has helped me over the years to come to this point.

For so long I have just wanted to get rid of the pain so I could move comfortably and do what I want. To me that is a cure, but there is the likelihood of it coming back because I didn’t get to the root of it. But healing is understanding what brought it on in the first place, then coming to terms with it and releasing it so it doesn’t come back. I thought it was just in my physical body and once that was gone, I was fine. Now I have come to understand there is so much more than the physical. I’ve had several people see something in a past life that was not resolved and has been carried over into this life. Not everyone goes along with the idea of past lives – I am very open to it though I have not really had any glimpses of my own past lives. It is very human to think this is the only life there is, on this planet in this time; that all this is just goofball, airy fairy, touchy feely woo woo stuff. I have read and heard quite often that if something comes up 2 or 3 times- PAY ATTENTION!

After spending most of my life with a limited view of things, I am now open and receptive to all kinds of possibilities because limitation is too confining and I don’t feel I have anywhere I fit in the regular world. I only know what is true for me and in no way would I ever try to convert or convince anyone of my view – in answer to Dr. Phil “It’s working pretty well for me”. Looking at myself as a whole person with feelings, beliefs, attitudes, pains, deformities, physical limitations – the whole gamut of my life so far, all of it has had an effect on my body. Is this a choice I made before I arrived here as a way to experience pain or to punish myself in some way for a past life? I can’t say for sure at this moment but it does made things more understandable. This past year especially has been uncomfortable, a revelation, satisfying, enlightening and instructive. Going within can be uncomfortable and upsetting but the end result is definitely worth it. I am learning to love myself and find out I am an amazing woman, not the loser I have felt I was for so many years.

Tags:identity, pain, Physical body, Reincarnation, rheumatoid arthritis
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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.

Tags:Fish oil, Gluten-free diet, Medical food, rheumatoid arthritis
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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.

Tags:Arthritis Foundation, Health, pain, rheumatoid arthritis
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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.

Tags:pain, rheumatoid arthritis, solutions, Volunteering
Posted in Questions | 5 Comments »

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.

Tags:Arthritis Foundation, Gift, identity, rheumatoid arthritis
Posted in Musings | Leave a Comment »

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.

Tags:Byron Katie, Fear, Health, rheumatoid arthritis
Posted in Questions | Leave a Comment »

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