Arthroplasty of the MCP Joints (New Knuckles)

If you had rheumatoid arthritis (RA) diagnosed in the 80's, or if your RA has been very aggressive, you might know the meaning of the title. Otherwise it sounds like medical jargon that you need to go home and google. As an involved patient I always want to know what medical language means.

The story starts with a surgeon who must have been tired of describing procedures to patients. He put up a hand to stop my questions at the first visit, when he laid out a plan that ultimately involved straightening my fingers. 

However when he said this process would take 3 operations that was the end of the road.  With a full time job I could not afford the time to have that much surgery. His plan was to fuse both wrists and then straighten the fingers - I found out on my own that this is the best way to proceed. His explanation of his reasoning was not 'patient-friendly.'

Once I retired I was able to take the time to start with surgeries. The results of operation #1 were very successful, so after a year I went back to have a second wrist fusion. With both wrists immobilized and with the new found ability to turn my hand palm up, I was ready for the grand finale and just in time, because my fingers were getting worse and using them was getting more difficult. 

How much worse? This much

But - when I went back to the surgeon, he said "Too bad you didn't have this done when I suggested it because I'm retiring." Not the most sympathetic doctor, but also not the only one in the city.

Now it's done and I have new knuckles. Despite telling Debby's story of success with this I had doubts, especially when a trusted friend told me that doctors in her city were no longer willing to do this procedure.

However, with a US friend who has RA finding that three of her fingers were so badly displaced that she has lost hand function I carried on.

This is a picture of what I believe my knuckles look like on X-ray now. I don't have an x-ray of my own since the doctor did not do one. Now I have an implant in all 4 of my knuckles (MCP joints).

Silastic implants

You might wonder whether the operation was a success.

It was done ten weeks ago. I started in a cast, then graduated to various splints. Every week the Occupational Therapist would adjust both the night splint and the one I wore during the day. 

The day splint became smaller as I was able to gradually start moving my joints more and to start on a gradually increasing exercise program. I felt that the splinting and the exercise program were as important to the operation's success as the surgery.  

Now I am able to write again and to type faster. The occupational therapist who is still helping me advised me to wear a small splint to keep my fingers straight during the day, and a splint from fingertips to forearm at night. In retrospect I think that the surgery was only half of the procedure - occupational therapy and dynamic splinting was vital for the final success.

Here's the finished product - my hand today! Better than before.

It's a perfect example of the teamwork between professionals that is required for the best results to patients.

Perfection  is impossible, but I expect to be able to use my hand for a lot more years now, and better long-term function was the main reason I had the surgery.

HCSMCA in Vancouver

The #hcsmca symposium felt like a family reunion, or a live in person tweetchat, from walking in the door of the room in the morning, right until I left for home.

Feels as though we've known one another for a long time

The atmosphere in the (un)conference room was excited and exciting. Robyn Sussel was an excellent moderator and starting with a prayer for the day from Syexwaliya of the Squamish Nation was an inspiring beginning.

Pat Rich talked to us about only building what you can maintain, and quoted @Berci. "I want every medical professional and empowered patient worldwide to feel connected to many others... when they have questions or just need a good word or support.  Social media has the potential to become this bridge between people"

Colleen Young talked about the strong sense of belonging and the give and take in social media - the way the Twitter welcome wagon is ready for anyone. And one of the biggest achievements of social media is that it helps people to take a step back - it breaks down silos, is a fountain of plain language, and creates circles of trust and real conversations. We need that trust to be able to share

So we all came to Vancouver to do more of that, and to try to make a road map to see HCSMCA into the future.

Larry Chu asked us how we use technology to break through silos and achieve mutual trust and inclusivity.

Lee Aase gave us sharing and learning from the Mayo Clinic and talked about how having a group of co-belligerants helps break through the blocks such as patient privacy.  

His point about healthcare shifting and emphasizing respect over power was chosen as one of the top 10 ideas of the day. Larry Chu added to that with "How might we improve healthcare if we focus on respect instead of power?"

Another idea from Lee Aase "Don't let perfect be the enemy of good." and a top idea from Colin Hung "Change the world locally." That one is worthy of a  shirt.

More advice from Colleen Young "Model the behaviour that you want to see and spend time on the people who do model it."

Then with these two memorable statements -

"Take one bite out of the elephant at a time." Robyn Sussel

"The Law of Two Feet - You can move to another group at any time."

- we were ready for 12 challenges in 50 minutes.

I picked Challenge #7: Using social media to advocate for policy change
Deb Maskens submitted it and led the group. It was a real learning experience for me.

We talked about engaging with policy makers, strategic positioning of advocacy, mutually beneficial partnerships, moving from slacktivism to interactivism, the qualitative shift in how people are engaging now.

Incremental change is a key as we ask why research, evidence and common sense do not carry the day. Question: What is respectful political advocacy?
One obstacle noted is that when patient groups meet with the opposition party they lose credibility with the government.

Another important barrier is the structural exclusion of advocates from decision making.

Our group of Canadians using social media, who have a passion for changing the healthcare system, had a very rich discussion about changing the system - in fact we decided to start using a new hashtag (I just checked and we will be the first) #HCsystemChange. 

We sent ourselves a postcard from the future, and since this very useful conference also gave us the ability to keep in touch with one another, we will be working on making some progress.

All of the challenges had ideas that were usable. I think the largest challenge we are faced with is making use of what we learned, and keeping in touch with our community. The value of community was obvious at the Unconference, and I think we all learned how effective it is to have the whole team working on solutions.

Personally #hcsmca has made a large difference to my life and seeing virtual community change to real life community in BC was a powerful experience.

Meanwhile I look forward to the next Road Trip!!

Andre Picard with delegates from #hcsmca

More ideas:

Proceed until apprehended. Pick a back-burner idea and go for it on Monday.

Involve patients.

Use technology to support patients.

Don't let perfect be the enemy of good.

How do we listen to and use stories and then turn the stories to action?

Intimacy, Sexuality and Sjogren's Syndrome. Sjogren's National Conference 2015

In comments and feedback to the Sjogren's Society of Canada members have indicated a wish to hear more about a topic that is usually kept in the closet - intimacy. In 2015 we had a great speaker who gave us useful information about intimacy and sexuality.

Many of us have brought this issue up during doctor visits and have found that many health care providers seem to be uncomfortable with this topic and do not offer much advice. 

Since this is so crucial to maintaining our relationships, we were happy to hear Iris Zink, a Rheumatology Nurse Practitioner and President of the Rheumatology Nurses Society, speak on the topic of "Intimacy, Sexuality and Sjogren's Syndrome." Her advice sounded excellent for people with any chronic disease.

Normally she lectures to audiences of health care professionals across the United States. In her role at the Beals Institute she is known as "the sex lady" and I think we may have been her first audience of patients.

I elect Iris Zink as our most memorable and original speaker ever. 

When I first noticed her in the room on the morning of the Conference I wondered about her red and silver boots but I had no idea that underneath her ordinary white jacket she was wearing a Wonder Woman cape.

  Note the pointer in Iris's right hand

Her no-nonsense talk was straightforward and clear - we can't keep treating Intimacy and sexuality as the elephant in the room. Embarrassment on the part of the patient and healthcare provider results in no discussion.

Elephant in the room

It was too bad her audience wasn't bigger. She got her message across in a very compelling way - so much so that if Iris wrote a book I would give copies away as a public service. Her lecture was helpful for patient and provider communication, as well as for patients and their spouses.

She told us that 66% of patients with hip and back Osteoarthritis, 62% with Rheumatoid Arthritis and 71% with Fibromyalgia have difficulties with sexual problems. 

She stressed that we should accept what we've got, and told us the brain is 90% of sex, the skin only 10%. Her presentation went over well with the mixed audience. 

The main issue is how we start the conversation and how we communicate with each other. For instance: Complete this sentence - "I miss ............." when you and your partner discuss intimacy. Talk, touch and practice. She defined sex as the ultimate union of the body and the mind.

Don't forget your Kegel exercises, men too. She suggested doing Kegels 30 minutes before sex to increase the blood flow to that part of the body. 

Her talk was optimistic and empowering. Most of the people in the room were smiling at the uninhibited style and the anecdotes and cartoons that drew us in. 

We were even given homework to do with our partners:
1. Talk to one another
2. Spend 30 minutes touching each other without intercourse or orgasm
3. If you are interested in steamy sex talk you have to practice.
4. Know your body and what makes you aroused
5. Date!!! Make it a priority!

All who wanted came home with catalogs so that we could have a look at some of the possible intimacy enhancing products.

References:

Iris Zink wrote an article called "A Rheumatologic Perspective on Intimacy and Chronic Illness" for The Rheumatologist - an official publication of the American College of Rheumatology (ACR).

A study by Bitzer and Platano that Iris referenced concluded that "sexual problems are frequent in many clinical conditions, but are not yet a routine part of diagnostic workup and therapeutic planning." She mentioned that 40% of ObGyns don't ask about sexual function.

The Real Rheumatoid Disease: You Mean It's Permanent?

Usually the pain and worry of rheumatoid disease (RD) is not a topic on my blog. In a change from positive strategies and ways to cope with chronic illness I'm going to talk about the worries that arise as we age with RD, based on my point of view as well as a few friends.

You can become discouraged with chronic disease. Even when you are doing everything right, enjoying life and being productive in ways that are important to you, you wake up every morning and RD is still there. That's why the groundhog is our symbol. 

Since this year's topic for RD Awareness Day on February 2 is The Real Rheumatoid Disease, here are some concerns expressed by women who have been dealing with it for a long time.

RD just never stops - it's as determined and persistent as the people who  live with it are. The day never comes when we can relax and feel on top of our health.

Polly's view

I think of Polly as my RA twin. We were diagnosed at the same age and have a lot in common. Here are some comments from her:

"Who knows when they're first diagnosed that Rheumatoid Disease (RD) is more than stiffness, an 'old persons disease' or claw-like fingers?" 

She says that people think you get RD when you're old, but it’s not always true. You get RD when you're young and you're in shock. I was upset lately when a doctor said to me "We don't see hands like yours anymore." 

A doctor told her, "Well you know you're 65 and you're going to get something..."  She told him that she's "had something" for half her life. Her plan is to switch doctors and find one less dismissive. Sometimes she gets tired of fighting it all.

Julie is a bit older

Julie says try being in your 70's!! She always has good advice, and is pleased that most of her doctors haven't given up on her and keep trying to help.

She feels that her long-time Internist is the most apprehensive at the same time as she appreciates his help. He's the person who has seen her going down-hill and sees all the records from other physicians.

I like her definition of old:
"I don't consider people in their 60's elderly. 
I have read that 65 to 75 is "Young" old
75 to 85 is "Old"
and 85+ is "Very" old."

She agrees with Polly that other diseases or conditions piggyback on the inflammation of the RA or the medications that we have taken.

Polly

Polly thinks we're not rewarding to our doctors anymore because as RD damage and effects start to pile up there isn’t much that can be done.  
  

Ally has complications

Ally worries about the healthcare system making life harder for those who have chronic or terminal illnesses. (She's making a statement here about COPD and Emphysema.) 

"It is just the opposite of good medicine for the patient, to increase stress, discomfort. Waiting for test results that take forever to be processed is not good medicine. They live out of a book and we live out of our bodies." 

She also sympathizes with doctors who have protocols on how many patients they must see in a day. She thinks that their constant running does not equate to good medicine

Jane

I just had my first lung scan.

"It's terrible when the doc is aware of a problem like crackles in your lungs but doesn't tell you !!! I am so tired of fighting for things now. I really feel like just giving in."

Back to me

We're no longer young and when we were diagnosed either the treatments were less effective or we could not tolerate them. It's good news that treatments are so much better, but there are still people around who can look back at "the old days" and who are worried about aging with RD. That's a topic where you don't see enough research. Clinical trials are notorious  for not including people over the age of 65, and also excluding those who have more than one health problem.

With the emphasis now on evidence based medicine that exclusion of the older age group is bound to create some doubts about the best treatment in the future.

In fact there have been studies showing that RD is treated less aggressively in older patients.

Bad as they may be, my bones are better than his bones

Custom apparel by Cathy Beattie

This post is part of a blog carnival with RAWarrior, Kelly Young. There are 13 contributors.

The Twitter hashtag for RD Awareness Day is #TheRealRD

Pain: What About Patient Centered Care?

This week I had a hand operation that involved the rearrangement of bones and tendons. In case you have not read much about orthopedic surgery it often involves power tools, and may cause you to feel pain after the procedure is over and the nerve block wears off.

In the past I have accepted the usual prescriptions for percocet and Tylenol 3, but this time I refused them since they make me sick to my stomach. Nothing like surgery and throwing up to make you feel really bad.

The plan for another type of pain relief did not work very well at all. I was given a prescription for a different type of pain pill and told to take 1 or 2 every 3 hours. How patient friendly is that? How could you manage to sleep?

perfect pain killer?

If these pills were so ineffective that they would only help with the pain for three hours that just doesn't seem good enough. What kind of patient friendly dosage schedule means you take pills every 3 hours? I phoned the surgeon about this and he did not even understand the point I was trying to make.

Let's just imagine we were talking to a Doctor like Victor Montori, who has sympathy for what is now known as the burden of disease. I wonder if he might think of a better way?

Burden of disease is crushing

I was about to delete this blog post until I ran it by a few friends. 

This is what Lucy thought: 

"I don't know what it is with pain medication but I think they think we are all addicts. When I had my knee replaced I had to fight for more pain medication in the hospital and then when I went home they gave me barely enough to last two weeks. Thank goodness my doctor agreed to give me more. Another patient at Physio had hardly been given anything by his hospital and couldn't do his therapy. It was really awful - he didn't have a GP to go to for help. 

I always meant to talk to my surgeon about this and I will in future as I think it is something they need to look at."

And Joanne agreed to an extent:

"I agree with you on the pain pills and with Lucy's comments. The drugs they give us going out of the hospital are completely inadequate both in dosage and in # of pills. I got too little after my hip surgery. Only enough for 3-5 days. I don't know the equivalence but after the hip experience, I asked my GP for a prescription in advance of hand surgery and had plenty of pills. Even that didn't get rid of the pain entirely. 

The fact that my pills had acetaminophen in them was also an issue because it would have taken me above my daily limit. If I have any more surgeries, I will request drugs in advance from my GP. From 3 surgeries, it doesn't seem to me that the hospitals will bend on this issue. I hope your pain begins to subside soon."

Whatever happened to patient centered care? Is it any wonder that patients don't always follow instructions?!

When you obviously have pain, beyond a shadow of a doubt, you can't even get adequate pain relief. That adds even more weight to the previous post about the difficulty of getting pain relief with chronic pain.