Acceptance and Support

I have liked the phrase "unconditional positive regard" for years but have never done any research about the concept.  It sounded like an aspirational goal that would be a good practice for life and work.

When I started to look it turns out to be a therapy term that was described as having "seeped out" of being used for therapy and into common usage.  It was a way to describe the attitude a therapist should have (ideally) when doing talk therapy.

                                      Freud's Couch from sunilification.net

David G. Myers says the following in his Psychology: Eighth Edition in Modules:

"People also nurture our growth by being accepting—by offering us what Rogers called unconditional positive regard. This is an attitude of grace, an attitude that values us even knowing our failings. It is a profound relief to drop our pretenses, confess our worst feelings, and discover that we are still accepted. In a good marriage, a close family, or an intimate friendship, we are free to be spontaneous without fearing the loss of others' esteem."  (source:Wikipedia)

I think there is no better place to experience the positive results of this attitude of valuing than Twitter.  Maybe I have been lucky but I seldom run across negativity and meanness there.  Other social media may be less positive. Based on things I have heard and because of laziness I avoid Facebook.  I've heard it described as Twitter with homework.

                                        wallblog.co.uk

One of the criticisms of unconditional positive regard is that it is impossible to do in real life where even our own kids are hard to accept all of the time.  But there is no reason to avoid trying to achieve this level of acceptance of others.

                                    Our kids...    cakesdecor.com

It may be easier to do online than in real life.  When people are mean right in front of you they are harder to ignore than when you can just hit delete or skip over a tweet that offends you.  

It's great to see so much generosity and encouragement that cuts across all levels especially in Health Care Social Media (HCSM). What a great and friendly way to learn and to improve your health literacy.

                                www.symplur.com

One of the tweets that got a lot of retweets was my resolution to comment on blogs and interact more. That proves to me that a lot of people already want to be supportive and helpful.  I suspect it is finding time to lead our own lives that is the limiting factor.  

It's not easy.  Sometimes it's hard to find words.  And of course by saying something negative about Facebook above I have already gone against my aspirational goal.  Maybe it was bad habits from the office - often the main sport is complaining. 

    Schemers from Downton Abbey

You can do so much good by supporting and encouraging, and then there's the pair above! Conniving and setting a bad example every season!

A Big Hand For Our Supporters

Many of us are lucky enough to have others in our lives who we could not live without and who help us far beyond the call of duty. It's not quite Downton Abbey treatment but only because our households are short staffed compared to Downton.  It's a lot of work to successfully deal with chronic illness and it's tough to do it alone.

Help in the house

I was struck by Eric and Kim's blog in December about the course of her RA and the level of involvement that Eric has as the well partner. He is a strong advocate for her best care, and a real believer that things can improve if they take the right steps. That makes all of the difference in the world.

There are other online friends I have made over the years and through looking back to our conversations day by day I have an appreciation of how much their husbands do as well.  It really does take a toll on the spouses and it affects so many areas of your relationship even while it is done with love. 

Honestly some days I feel like the queen in the parlor, eating my bread and honey while my husband does all of the work. It's not so much what you can do that bothers you - it's what you feel that you should do.

Eating her bread and honey

And then there are the drawbacks of relinquishing our independence when we must.  In my friend June's words "The way that my John acts, he enables me and causes me to feel like I can't or shouldn't do anything.  I tell him he is making an invalid out of me, even though I do need and appreciate his help. He does smother me sometimes with his good intentions.  I have told him that he needs to let me do what I can do." 

"One of my friends commented on how he took such good care of me and was so protective.  I am one lucky woman!"  (And many of us are happy to agree)

It's great when things work out like that.  Some couples make it look so easy.

We go together like

I asked June if John wanted to comment and here's what she said: "We were eating dinner last night and I asked John if he would write something for your Blog about being a Spouse of a wife with Rheumatoid Arthritis.

He asked me "How do you spell - Living in Pure Hell" -  Then he started laughing.  He said it really wasn't so bad.  I said "what about all the doctor's visits, hospital stays, helping me with splints,  bandages, housework and pushing me around in a wheelchair sometimes".  He said he liked to read so it wasn't so bad waiting and he really liked to push the wheelchair."

No, not really.

"This paper about women with RA and their healthy spouses sums up worries of the spouse.  "Husbands were most affected by their own perceived vulnerability to disease and coping inefficacy."  So in addition to all they do, there is the worry about being able to continue to do it.

And here is a paper about social supports and how they help both spouses in chronic illness: "The effects of chronic illness on the spouse. Social resources as stress buffers".

                                 genderandhealth

The Rheumatologists' Secret Weapon

I am an enthusiastic supporter of the profession of Occupational Therapy (OT).  The services they provide patients to help us develop coping strategies and to aid in the empowerment we need to manage our own health problems is impressive.  They are the secret weapon used by many rheumatologists; if your doctor does not recommend that you see an OT, double check with him or her. If the doctor feels it is uneccessary you can find them on your own or possibly through The Arthritis Society in Canada.

When I was first diagnosed with RA thirty years ago I met an OT at the hospital and learned the Principles of Joint Protection.  One of the most important 'rules' is that you always use a larger stronger joint to perform an activity when possible.  So it is better to push yourself up from  chair using your forearms rather than your hands or fingers. You need to preserve the small easily damaged joints.

                                       www.arcinteriors.com

Often the first thing people think of with OT and inflammatory arthritis are the items that can be used to help with daily activities. There are household items like key turners and kitchen items. My favourite of all time is the right angled knife. 

It makes cutting so much easier on my hand and wrists. I also preserve my finger joints when I write by using pens with a large barrel or made larger as you see in this picture:  

There are so many ways that an occupational therapist can help you to carry on with doing the things that are important to your life and your job.  They usually start with an assessment and make a treatment plan for you - perhaps including special exercises, or modifications of the ways you do things.

Here's an example of a life-changing OT experience from my friend Julia who was suffering every time she had to use her washroom.  Her knees were causing so much pain that it would sometimes take her 30 minutes to get off of the toilet and carry on with her activities.  One visit from an OT and a raised toilet seat solved her biggest problem. She actually says "Now I love my toilet!"  How many people have you ever heard say that?

                                      www.ojmedical.com

So my advice would be that if certain activities are becoming difficult or if you are having a lot of pain in a specific area you should get a referral to consult an occupational therapist.  They can help with any joints but especially if your hands or wrists are affected by Rheumatoid or Osteoarthritis.

Below are two signs that there may be an OT in the vicinity.

The electric frying pan and the heat gun may be specific to rheumatology OT's but I am willing to bet you'll go a long way before you find an OT who sees patients and has no wheelie bag.

There are many types of splints and supports that an OT can make, or help you to find for your hands and fingers.  Here are pictures of two types that have helped me.

                      Resting splints can help with wrist pain and maintain good hand and finger positioning.

Silver ring splints can keep your fingers in a more functional position.

You can also have your work area assessed to see if you are working ergonomically.  

I am concentrating here on only one area where OTs can specialize. They also play a large role in helping anyone learn better ways to live and deal with a large range of problems from autism to stroke to mental health. 

There is more information about splints in this post. from the past. I'd like to take this chance to thank the OTs who have helped me through the years.  

More Reading
From the American College of Rheumatology about OTs

Ten Tips to Feel In Control With Chronic Illness

It's easier to cope with chronic illness if you feel that you have some control over your life and your health.  When everything seems to be spinning away from you, life is harder to manage.  

Here are my first and best ideas to help with this.  More suggestions are welcome -  please leave your ideas in the comments.  Everyone loves to hear tips.

Lifesavers

With chronic illness you are forced to be your own health manager so it is up to you to gather information to help you make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you. Yes, there is always the hope of having them return but in the meantime try to find the management style you are most comfortable with.

1. Participatory
2. Director
3. Teamwork - recommended    

                 I'm in charge here

The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It's harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts. 
Yahoo has a more old-school type of healthcare support group e.g. RA-Support and ra-factor are two of thousands.  People get to know one another well over the years.  Then there are "boards" like Sjogrens World or Rheumamisfits, where a consistent group of people can offer all kinds of experience and advice. 

On Twitter it is easy to become part of the #rheum, #chronic or #spoonie community. Also blogs like The Seated View and RAWarrior and numerous others can be sources of support and information. As you become comfortable with a group they can often act as your cheerleaders for encouragement and of course you can cheer them on too.

                                       

Support Group

Number 2 on the list is educate yourself.  Start small and learn the vocabulary of your specific problem. Then start learning more details. It makes a lot of difference if you know what the options are likely to be before you are faced with them. That helps you to stay in the front seat, even when you are not the driver.

#3  Start now to collect tips about good doctors, clinics, possible treatments and other types of health care professionals who may be able to help you, if not now, maybe in a few years. When you need them it's much easier if you keep track as you go along. 

#4 This one is purely practical. Try to build up a small surplus of your most essential medications.  Every time you forget to take one put it in your "extra" vial.  You never know what can happen - hurricane, earthquake, pharmacy fire.  You don't want to be desperate because you are running out of medication. It's another way to have  control.

                                   Drugstore Fire gainesvilletimes.com

#5 I suggest you journal or blog. There's a post about that here so if it attracts you as an idea you can see the reasoning and read a paper about what it can do for you.                                      

#6  It's good to feel that you always have a possible "move" that you can still make or plan that can improve the way things are going for you.  Whether I'm waiting to see how a new treatment works before going on to the next, or just still have pain treatment possibility that I don't always use or need, I feel much more in control if I have a strategy that may help if things get worse. 

For instance in the pain area I have a TENS machine as well as alternative pain pills that I don't use very often. This means that I can often treat my own pain safely and go to the doctor less often. Also I don't feel backed into a corner. That can make people feel desperate.

No, going to the vet is out of the question

                                   
#7  It's worth being open to trying different ideas. In my case, though I feel that medication is in general working for me I would consider trying massage, acupuncture, change of diet, specific exercise and so on.  There is little I rule out completely except things with no proof at all or that sound to good to be true. I've also learned it's a bad sign when people on social media try too hard to get you to use their wonderful remedy.


#8 It's good to feel that you can control and improve at something - anything.  For instance there are many brain exercises free on line.  One is Beat the Chimp.  Getting through the sudoku or crosswords every day is another example of control as is any creative and fulfilling experience you engage in, including crafts and puzzles.                           

#9 You can take a leaf out of Neil Pasricha's book and start your own Book of Awesome.  There are many things in people's lives that can lead to small moments of joy.  Open up a folder on your desktop and find a happy picture every day to put in it, if you can't find things any other way.
                                       

Thinking of summer

#10  Pets can keep you going when nothing else helps.  They need you.

                                   Dolly in her Liberace Coat


I read a scientific paper called Dispositional optimism and coping with Pain that discusses how your conviction about having control helps you to to deal with stressful experiences.  Here is a quote from it: 
"When analyzing the course of psychological processes of coping with pain, attention should be drawn to the factors which may support an individual in their efforts to reduce sensations or get control over stressful experiences. One of such factors is an individual's conviction about having control over what happens in life or about the ability to influence and change the course of events"
(bolding by me)

I found this paper when putting this post together, so here is the scientific basis to my conviction that control will help with chronic disease.  All the best to you in your own efforts

Too Many Decisions

It was a week for blog-reading. I find it a great way to find out how other people cope. One of them, called I Can't Decide by Chronic Rants struck a chord with me and reminded me of another article I saw in the summer called Life, Interrupted.  In Suleika's blog from Life, Interrupted, and also in what Chronic Rants says the sheer number of decisions and effort that goes into decisions is a serious problem. There are so many choices to make and so many consequences to them that you can just get worn out.

                               www.yourgoldwatch.blogspot.ca

For both of them decisions about health care and future possibilities are almost overwhelming.  In Suleika's case, though struck with a life-threatening illness, she is still covered by her parent's health insurance because of the Affordable Care Act.  However the number of bills and complexities of insurance coverage are so difficult to handle that her mom has had to quit her full time job so she can handle the financial and insurance details, while Suleika concentrates on getting better, at least for the next two years.

For Chronic Rants the situation sounds even more confusing with numerous choices and possibilities and no easy route to solid information and the best decision. Having to spend that amount of time and energy just to maintain the basics of treatment leaves you unable to get better.

Their situation reminds me of my search for a diagnosis early in my disease. The symptoms were overwhelming, and at the same time I had kids, a job and family. Trying to juggle all of the responsibilities kept me from making the best health choices.

This is a problem that we all wish that we could  help to solve and highlights an issue all too common with chronic disease. 

                                       webkaye.wordpress.com

This problem is known as "decision fatigue".  There are studies about it that show that the more problems we have to worry about and make decisions about in a day, the harder it is to make good decisions or any decision at all.  

I have taken some information about this from a political article in Bloomberg by Ezra Klein where he quotes from a book called “Poor Economics,” by Abhijit Banerjee and Esther Duflo.

So while you are struggling with all of the issues of chronic disease give yourself some sympathy for the burden of all of the work you have to do just to stay afloat. When you realize that some of the best coping mechanisms with chronic illness are money and a good education it gets pretty discouraging, and that may account for the scorn some well-off politicians use when they blame poor people for making bad choices. 

                                      www beadingdaily.com


Dealing with all of these decisions is like making sense out of a complex puzzle over and over every day. It takes a lot of energy just to do the basics, and it's vital to our well-being.

When it comes to finding a way to get help with health decisions getting expert advice is vital.  How to find the experts is yet another problem.

In theory a set routine ought to be helpful if only in lessening the sheer number of choices you make every day.

If there were an easy solution to this we would all be better off. Please leave ideas in the comment section.

Strange Cures for RA

Some days you would think that cures for arthritis abound and those of us who have it have no excuse for not recovering. Some of this cure advice, like the importance of diet and exercise, would certainly be a benefit to anyone, but generally much of it is just old wives tales.  

Exercise is in fact something people with RA take to heart. To use RA Warrior's results from a survey of comments, more people with RA exercise than among the general public, so why are we not more healthy?  Is this the culprit below?

  

                                        IL-17 contributes to inflammatory diseases Photo: Professor Kingston Mills

Have you heard that gin-soaked raisins will cure you of rheumatoid Arthritis (RA)? I can just imagine a little gang of gin-soaked raisins chasing after the cytokines in the IL-17 family trying to have some effect on them.  Even with cute sneakers it's just not going to happen.

                                  NowhereWithMe.com

I have developed a huge resistance to most ideas that don't make sense or are too good to be true in their promises of immediate relief.  There are no ideas in this post except for diet and exercise that have any truth in them if you ask me.

My dad suggested I should drink apple cider vinegar every day. My brother gave me a copper bracelet with dragons on it. It was the copper that is said to be a remedy.

                                  Yourgoldwatch.blogspot.ca

Here's another copper cure we can look at.  And the price is right!! Good thing we all saved some Canadian pennies.

A good friend went to a Chinese druggist and bought special pills to help me. I even tried them but did not notice the difference, though I liked the way they looked.

                                  These are really black balls. The pills were like this.

Let's not forget the magnets either, or the potato juice therapy that some people call a biological treatment.

                                    tensionnot.com

This is only scratching the surface on bizarre cures. You could look at snake venom or bee venom cures, or bury your lower body in sand. Or how about olive oil and kerosene mixed and applied to your joints before a shower?  None of these ideas has any real proof or a clinical trial.  I think doing a trial on these would diminish your professional reputation.   

Though I did see that a scientific paper has been published in the National Review of Rheumatology with this title: Autoimmunity: Will Worms Cure Rheumatoid Arthritis? Do you think it is suspicious that the abstract is absent?

                                        dothegreenthing.com

Insensitive Remarks Slip Out

My online friend Patty was out shopping one day.  She is so troubled by her hands she does not even like to eat in restaurants anymore.  She accidentally dropped a pill in a store and wanted to pick it up so no child would be at risk, and as she tried a little girl said "Mommy why does that lady have witches' fingers?"

                                        realenglishkindergarten.com

I have two of those unforgettable comments in my memory.  Last week at the hairdresser I mentioned to someone I was talking to that I had RA.  When she looked at my hands she said "Oh, how awful"  This was obviously not meant unkindly because she proceeded to give me the name of  a rheumatologist I should see. It just came out all wrong.

Another time, in talking about exercise with a health care professional, she asked me why I would want to exercise for upper body strength with hands like mine.  The minute she said it she regretted it - too bad we can't delete conversations.  Many times I wished I could.

In truth people are trying to help with these ideas and just don't know enough about what to do that is effective. Raising awareness about RA may help us in the long run.

The worst thing I heard was from a friend in the midwest. The members of her church felt that it was a  deficiency in her faith that led to her disease being unremitting - and this from the group where traditionally support and comfort for the sick is thought to be ingrained.

I've found I just need to accept the comments people make for what the people mean to say, not the words that come out.   And no excuse for the happy baby, I just love that smile.

  

The Most Exciting Time in the History of RA

The treatment of inflammatory arthritis has changed dramatically over the past 15 years and the talk I am blogging about is a great introduction to anyone with a new diagnosis.  

I was there at this presentation and have recommended it to many people since.  It's a good way to get a basic understanding of inflammatory disease and the treatments.  The mechanisms of action of the various treatments are well described. 

Dr Edward Keystone is a dynamic speaker and also Director of The Rebecca MacDonald Centre for Arthritis and Autoimmune Disease  - a center devoted to research into genomics, therapeutics, and outcomes in autoimmune inflammatory joint disease and osteoarthritis. It is part of  Mount Sinai Hospital in Toronto.

Dr. Keystone gave a talk in 2010 that is still relevant, even though many more drugs have been introduced in the years since then. The title of the talk was The Most Exciting Time Ever in the History of Rheumatoid Arthritis and used to be found on the site of The Arthritis Society. 

                                   And it's even better now

It's a long talk and he starts speaking 10 minutes in after the intros.  He describes what RA is and makes the scientific information about biologic drugs very understandable. It would really help someone faced with a treatment decision or a new diagnosis of inflammatory arthritis.

Here are some of the points that he made:

If the joints are swollen they will sustain damage

Aggressive early treatment is important

RA feels like a fire in the joints.   (In this post you can see I described the rheumatologist as a fireman)

RA is a medical emergency.

Tight control is the best strategy. Adjust therapy frequently to reach the target, which is now remission.

You start with methotrexate ...

                                Fun Wow Methotrexate injection time

This talk is one of my favourite resources.  Dr Keystone's enthusiasm is infectious.

I had hand surgery just before I wrote this blog post.  I needed the surgery because of early damage that happened before I was diasgnosed and had good treatment.

There were no fun pictures to see under hand surgery. (they were informative but not for everyone) This is not too bad though.

I was going to blog about wrist fusion but I am not sure how many people are interested in something that is done less often now.  At the moment I am taking the ostrich stance on it.  It's easier to stay calm that way.

I did not know ostriches really did this.


** Here is another excellent resource for a patient facing a treatment decision.  It's a blog post by Dr. 
Shashank Akerkar called Time, tide & inflammation waits for nobody...
He followed that up with another that is very informative History of Rheumatoid Arthritis that shows the pace of progress in treatment.

So, the doctors weigh in, and seem to agree on the best course of action. It worked for me - with good treatment I worked until I retired. Honestly, it was no picnic but it was a goal that meant a lot to me.