Patience

patiencePatience is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without becoming annoyed or upset; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties.

It is also used to refer to the character trait of being steadfast.

http://en.wikipedia.org/wiki/Patience

When it comes to living with rheumatoid arthritis, Rheumatoid Arthritis Guy continues to learn many lessons. Some of these lessons have been learned more than once. One of these lessons that has served me well many times in the past, and which often seems to come and go – hand in hand with my pain and flares – has been the lesson of patience.

I have written about patience before. In fact, it is one of My 5 Favorite Things About Living With RA. Today, I will once again write about patience – and I have no doubt that I will address this issue many more times, down the road.

People around me – from casual acquaintances to strangers

Living day in and day out with rheumatoid arthritis, it is sometimes easy to forget that everyone around me does not know all of the details, big and small, about rheumatoid arthritis. In a way this sort of make sense. If someone tells me that they have Behcet’s Disease or Hashimoto’s Disease, chances are that I will have the same blank look on my face that I often see when I tell people that I have rheumatoid arthritis. I might even put my foot in my mouth and inadvertently say something offensive. While I am the type who would take note and do some research as soon as I got on a computer, I have to remind myself that not everyone operates in the same manner. This is yet one more reason to continue doing everything I can to raise awareness of this disease with which we live. Sure, I’d love to have a day where everyone has a good understanding of what RA is – and I have no doubt that RA and other autoimmune diseases are currently undergoing an important awareness movement of their own – but this is not going to happen by itself, and it’s not going to happen overnight. Patience.

People around me – from close friends to family members

Yesterday, I was reminded once again of the importance of honest and open communications with the people who are close to me in my life. I made the following claim: “I think that since I am handling this current flare just a little bit better, that people around me think that my rheumatoid arthritis is getting better.” I was asked: “Have you asked them?” The answer to that question was no. Once again, I was assuming that the people around me should be able to understand what I might be going through at any given moment, without me telling them as much. If I want them to know, it’s my responsibility to tell them. Sure, there are different signs and cues that they can pick up on…just this past week I’ve been told by more than one person that during my worst moments the pain is visible on my face. But they deserve a type of communication beyond my facial expressions, so that they in turn can better know how to reach out and provide me support during these difficult periods. Patience.

Me – my body

Experience has shown me that my body enters into a flare relatively quickly, and that my body requires a much longer period of time to gradually exit a flare. Ask me to diagram any one of the numerous flares I have had, and the shape would basically be the same. Even though I am only a few days into this current flare, today I once again found myself hoping that things will get better in a day or two. I know this is not how it works. I know the scale that I need to use to measure improvement needs to be zoomed in, and what might have seemed like baby steps last week have this week become great strides forward. I add new treatments and medications to my regular care and expect to see drastic results in days. There is one part of this equation that need to be adjusted – maybe it will be better to think in terms of weeks, and not days. This has often worked for me in the past. Patience.

Me – my mind

Things upstairs are once again getting a little foggy. Simple calculations become difficult, and mental notes are often forgotten. During just the last half year all of the following things have happen to me as a result of brain fog: I lost my passport somewhere between baggage claim and the taxi, I lost my money clip by leaving it in the back of a taxi, I turned in my tax forms with a completely wrong set of figures, and so on, and so on. Just yesterday, as I was leaving a taxi, I glanced into the back seat and saw my wallet sitting there, ready to drive away. I thought I had put it into my backpack, but I hadn’t. So while the brain fog is still there, at least I am now doing what I need to in order to try to make things a little better. Double check. Triple check. Write things down. Ask someone else to review things for me. Patience.

Me – my spirit

I admit it. Spirituality is currently the biggest gap in my holistic approach to treating my rheumatoid arthritis. I have a lot of work to do in this area. But, at least, I have admitted as much to myself. Patience.

I start today with a new found sense of patience.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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September Is Canada’s Arthritis Awareness Month

Canadians with arthritis think physical activity could be harmful, poll finds

Canadians with arthritis are urged to get moving during Arthritis Awareness Month

September 1, 2009 (Toronto, ON) – Almost two-thirds of Canadians struggling with arthritis believe that physical activity poses the risk of aggravating their symptoms, according to a recent poll commissioned by The Arthritis Society. This percentage was considerably higher than the general population who responded at 46 per cent, as indicated by the Ipsos Reid survey.

“As long as this misperception persists, many Canadians with arthritis will be reluctant to include physical activity as part of their treatment program,” says Steven McNair, President and CEO of The Arthritis Society. “We are using Arthritis Awareness Month in September to spread the message that active living can be sustained by most people with arthritis and is vital to their long-term health.”

Arthritis, among the leading causes of disability in Canada, affects nearly 4.5 million people of every age and ethnic background. Arthritis can be caused by joint inflammation or joint degeneration. People with arthritis often find that their ability to perform daily tasks is limited due to the effects of the disease and often become less active in an attempt to keep their joints as comfortable as possible. In fact, inactivity can lead to a loss of strength, reduced flexibility and more pain. While there is currently no cure for arthritis, exercise plays an important role in treating the disease and minimizing damage to the joints.

“The benefits of physical activity for people with arthritis are remarkable,” notes Dr. Joanne Homik, Chair of The Arthritis Society’s Medical Advisory Committee. “Exercise protects joints by strengthening the muscles around them. Strong muscles and tissues support those joints that have been weakened and damaged by arthritis. A properly designed program of physical activity reduces joint pain and fatigue, improves mobility and overall fitness, and alleviates depression. I tell people with arthritis that, ultimately, when they stay physically active, they can have a more productive, enjoyable life.”

Read More: www.arthritis.ca/toolbox/media%20centre/news/releases%202009/092009/default.asp?s=1.

Physical Activity & ArthritisPhysical Activity & Arthritis
To help Canadians with arthritis make active living part of their daily routine, The Arthritis Society has just published a new Physical Activity & Arthritis booklet.

This free resource, available in print and online, includes valuable tips and a detailed list of physical activities and exercises that are recommended for people with arthritis and joint pain.

Before starting any new exercise program, always check with your health-care provider to ensure you are physically ready.

The Arthritis SocietyThe mission of The Arthritis Society is to search for the underlying causes and subsequent cures for arthritis, and to promote the best possible care and treatment for people with arthritis. Our vision is “A World without Arthritis”.

Founded in 1948, The Arthritis Society is Canada’s leading charitable organization devoted solely to funding and promoting arthritis research, programs and patient care.

The Arthritis Society is the primary provider of information and education for people living with arthritis in Canada. Canadians can contact the Arthritis Information Line at 1.800.321.1433 or visit The Arthritis Society’s website at www.arthritis.ca to get the vital information they need about their disease.

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Voices Of RA: The Mom

RA Guy mom shirt

Rheumatoid Arthritis Guy as a kid, proudly wearing a gift from his mom.

I am at the half-way point of my month-long visit with my son, RA Guy.

My husband and I live in a different continent than our son so the only methods of keeping in touch with him are through phone calls and/or emails.  Although, I must say that since he moved here about 7 years ago we’ve been fortunate in that we’ve managed to see one another on numerous occasions during each passing year – he’s either visited us at our home in Texas or we’ve met in the San Francisco area, we were together at our daughter’s wedding in Missouri, we visited him here a few years ago, and once we even met up in Paris, France for a vacation.  I was so glad when he started his blog because it offered me a way of daily keeping informed of his rheumatoid arthritis.

This summer the day-to-day postings of my son detailed the chronic, daily RA problems he was experiencing and my heart ached for him.  This had been occurring since November – it had been months.  I cried as I read his postings that detailed his worst flares.  It was during one of these days that I was on my computer reading my son’s posting for that day that my husband walked into the office area of our home and I turned to him and told him that I thought I needed to come visit our son…right away he responded, “Go ahead and go if you feel that you need to go.”  So I made plans to come visit him as soon as possible, although my husband and I have plans of coming for several weeks later in the year and spending Christmas with him and his husband.  Maybe there wasn’t anything that I could do to take away his suffering and his pain…but at least I could come and just spend time with him to support him through his daily struggles with RA.  When I called to tell him my plans I told him I didn’t want to come do any “tourist” stuff – I just wanted to come spend time with him, sit with him, cook for him or just do whatever there was that I could do for him to help him through his daily struggles with RA.

As a parent I wish it was within my power to control my children’s sufferings, yet that is not always the case.  As a parent I will do almost anything to help any one of my children, yet there are times when there is nothing more that we can do…as is the case with a chronic illness.  It was during these times that my only remaining resort has been praying for him.  I believe prayers to be very powerful.  My husband and I have a daily habit of praying for all of our children and grandchildren.

Four years ago when I turned 60 our children surprised me by all showing up at my home on my birthday and also planning a surprise birthday party for me that weekend.  Quite a feat since 4 of our 5 adult children all live far away from our home – 2 out of state and 1 out of the country.  That was the very first time that I saw my RA Guy son standing on two crutches and it was quite a shock! – he was only 32 years old at the time.  Less than a year later I had flown to San Francisco to go spend time with him (before he left the country again) while he was there for a brief period of time following his sister’s wedding in Missouri.  At the wedding I’d been happy to see that he was now using a walking cane instead of the crutches – an improvement, I thought…signs to me that he was doing better.  One day, he and his partner and I were walking  in the Mission district of San Francisco, doing some shopping and browsing, when all of a sudden my RA Guy son stopped and could not go another step – he was in a great deal of pain and couldn’t walk further.  I stayed with him while his partner went and got our car and picked us up.  My first experience of how RA flares could suddenly appear!

Two years later, in February 2008, three of our adult children came home for a visit to see their grandmother who had been quite ill – our RA Guy son was one of them.  He stayed on longer than his two sisters and we enjoyed his extended visit very much.  He was going through a relatively good period with his RA at the time.  We visited relatives and he and I went out shopping together for things he was taking back to his home.  During that week my husband celebrated a birthday and our RA Guy son shopped for and prepared all by himself a lavish breakfast for his father.  Our son has always enjoyed cooking and would make a great chef.  One year later, in March 2009, our RA Guy son once again came to visit us – this visit, however, was very different from the year before.  He required a great deal of bed rest, sleeping most days until noon.  He had flares-ups in his ankles and hands.  We couldn’t plan on going out to visit relatives or do any shopping because we never knew how he was going to be feeling, whether he’d be physically up to it or not.  This time he didn’t do any cooking…something we knew he loved to do.  The changes that his RA was having on him were clearly visible.

Shortly after returning to his home following his last visit with us in Texas, our son started this blog and has been documenting his life with RA.  I have always been very proud of my son – ever since he was a little boy up until now to the man he’s grown up to become.  I know that all parents believe their child to be “special” and I’m no exception, except that I had affirmation of this fact from a psychologist at the University of Texas in Austin who tested our son when he was only four years old.  I’ll never forget the day she called me into her office to give me the test results  and told me that he was a “special” child – that his IQ was very, very high and that “someday he would do great things”.  Yes, my son has RA, but that doesn’t change who he is.  I continue to be very proud of him and what he’s accomplished in his life.  I have read the responses he receives on his blog and I know that he is touching many lives with it.

I’m a believer that sometimes things happen in our lives and we don’t know or understand why – yet I believe that there is a reason for why things happen…good or bad.   Out of the worse things that can happen one can look for and find some good in it.

These past two weeks that I have spent visiting my son have been very special to me.  I have always enjoyed my visits with him.  I’ve been able to go with him to his physical therapist appointments and this afternoon I am joining him at his psychologist’s appointment.  We’ve had the opportunity to do some light yoga exercises together once.  I sat by him and cried with him one evening during one of his most difficult flare ups since I’ve been here.  It isn’t easy (in fact it’s very difficult) to see ones son suffering in pain, still I wouldn’t have it any other way than to be here with him during part of this difficult period for him.  At this point it’s all I can do – just to be here with him to offer whatever support my being here brings him.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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