Five Tips For Dealing With Chronic Disease

1. RA helped me to develop a sense of optimism

When my health changed for the worse I became depressed about pain and fatigue, and was even more stressed and unhappy when I got a diagnosis of Rheumatoid Arthritis (RA).  I remember clearly that it was summer, and I was told to stay out of the sun because of my medication.

For some reason, my mind went back to my mother - she used to enter contests at one point when we were kids. I thought I'd try this home made solution! I started to enter and once I got started it was great to be looking forward to exciting calls, messages and letters. Gradually that positive feeling occurred more often.

I wish I could uncover the secret of being this happy

2. You need to be able to find things out and put things together.

When you suddenly find yourself with a health problem you have barely heard of, it is worth learning at least the basics about the illness and treatments. In the case of RA the process of getting effective care was too slow for me. If I had known more about the medications I would not have had to weigh the options and start a new treatment months later when I saw the doctor again. Being ready would have helped me to feel better sooner. Knowledge affects your outcomes.

Picture taken at Paul B. Helliwell Patient & Family Library at Toronto Western Hospital. You need to have your organs together

3. You need help

Hopefully not this level of help

Your primary care doctor is the person you see most often. Do the best you can to find someone who will work with you. With a chronic disease you can learn a lot and get help from other types of health professionals too.

With RA I really value the help of the rest of the team I have put together over the years - an Orthotist to make the orthotics that keep me from limping, an Occupational Therapist to tell me how to save my joints and find devices and ways to make life easier and a Physiotherapist to oversee the physical areas that the rheumatologist never seems to mention.  In fact my physio cheered me on for years as I struggled with disatisfaction. It really helps when someone keeps saying "You're doing great."

4. You have to be persistent to get good treatment

I always hope for a great treatment that will work fast - like a bolt of lightning

Good treatment is not likely to find you. You have to search it out. If your first  doctor is wonderful, fine, but RA lasts a lifetime, so it's best to find a specialist you can trust, and also one who has up-to-date knowledge of treatments. Even if you want more conservative treatment at least the best doctors know which of the milder drugs are most likely to improve your health.

An example of persistence. My Doctor has to fill out this many forms to get people on a biologic drug.

5. You need support

They are holding each other up

Your family and friends (some of them anyway) will be good sources of help and support for you during your ups and downs with RA, but I'd say there's no substitute for a support group. At first I was unable to find an in-person group; now I have discovered one through volunteering for arthritis related causes.

My support group of choice is online. I've been in the same one for 15 years and we have grown very close. When you're worried and don't want to make your friends and family even more anxious the best people to talk to are others who have been through it before. They are invaluable to help you get through tough times.

On Twitter you can find people with RA using #rheum as a hashtag, or you can go beyond just talking to others who match your illness and try to make help others and change things that are wrong or less than perfect in health care. Helping others is one of the best ways for people with chronic disease to start going beyond their illness. Do you know the real secret of the self management courses you see?  It's in just deciding to take it - that's a first step.

Once you join they teach you how to set goals that will work for you. Even if you decide not to set a goal some weeks it still does you good because you are deciding what you want to do, not your disease. So there is my theory of self-management!

I've Never Met a Couch Potato with RA

Recently at a session of an Arthritis Society course called "Living With Rheumatoid Arthritis" I heard an amazing statement. The physiotherapist who led the session said that in 20 years of seeing RA patients she hadn't ever met a Couch Potato with RA and went on to say that many of us with rheumatoid disease are type A personalities.

Couch potato and an 'A' type RA hero

She was saying that the beliefs we grew up with, such as "if you feel sick don't give in to it" and "you can do anything you set your mind to" may need to be changed when you develop a chronic illness. Feelings that make you "soldier on" and "push yourself through the pain" may help you get ahead when you're healthy but once you are ill, you need to listen to your body and take good care of yourself so that your health does not get worse.

This extra care for yourself can make you feel guilty and lazy when your body calls for rest. This is when you call on your communications skills and ask for help and understanding. The course leader also suggested a strategy for coping with worry. You save it up all week and worry from 7:00 pm to 8:00 pm every Wednesday night.

It's not easy to worry for an hour straight.

Another strategy for dealing with what you've lost is to do an assessment of your skills with the idea of finding which are transferable to the new self that you will have to create. The self which you reinvent based on your new reality can be very different from the old, but the bedrock is the same.

Here's a link to a book "Positive Coping With Health Conditions" which you can read online as HTML or download as a 42MB PDF. It helps you to learn more about living better. It's a long journey with changes and losses along your road. Remember, stress management is a life skill that you can learn.

One of the adjustments you can make is to put yourself in the center of your life.  Another is giving yourself permission to be good to yourself. Guilt and worry make that hard, but remember our course leader. "I never met a couch potato with RA."

To read more from #RDBlogWeek...

*pictures copyright amckinnon

Self Management: Join The Team

When writing about patient engagement it so often sounds like there are many people out there supporting this effort. In reality there are brief encounters with doctors and their staff members involved in patient care. The rest of the "support" community" such as lab workers and many of the technicians who conduct tests, are so jaded and overworked that often I just feel 'processed'. They are also far more protective of my data than is logical, even telling me that it is illegal to give me info about myself ever because it belongs to the doctor.

I've been fortunate to have allied health professionals who are very encouraging and full of good advice. I owe a lot to physiotherapists, occupational therapists and orthotists.

Sometimes I wonder if it's possible to have a chronic disease and still be considered a member of the "worried well."

                                            Worried and well?

I found this PhD thesis "Capturing daily fluctuations, flare and self-management in Rheumatoid Arthritis: The patient perspective." written by Caroline Flurey.  It has been published as a book and is well worth reading.

There were interesting insights into the way patients look at their lives. One is the finding of "four different experiences of daily life with RA: 

1. Feeling Good
2. Taking Active Control
3. Keeping RA in its Place, and 
4. Struggling Through." (Mostly male)

The other was this description of flares"
"Two different flare-types have been identified: "Inflammatory Flare" (defined by pain and inflammation) and "Avalanche Flare (defined by the cascading effect of inflammatory symptoms, emotions and life events)." She has great insights and the paper also is a good resource to identify past research relating to daily patient struggles with Rheumatoid Disease.

                                        solar flare from nasa.gov

Speaking of struggles here's a look at what my friend Patty says about things that make her indignant:

"I got copies of all the tests and reports that the specialist is sending to my primary doctor.  Well, on the notes under General Appearance the hepatologist noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of RA can make you look sick. I'm sure I will mention this to him when I have my appointment.  I mean, there is another way of saying this, isn't there?"

                                        You don't look at all well

And here is her experience with feet:

"I know a lot of rheumatoid arthritis patients have a high tolerance level for pain. My foot Dr told me that RA'ers really can handle foot surgery. "You can tell who deals with pain everyday"  he said "normal people whine a lot about it". Guess we don't whine as much because we're used to it. Have you tried New Balance shoes? They're a godsend.  My podiatrist recommends them with my orthotics."

                                        Bare feet difficult with RA

Feet were the problem that led to my diagnosis of RA. The pain was too much to deal with for the long term so I chose surgery. Now I have had my forefoot (bones near the toes) reconstructed.

Though doctors don't go out of their way to use this term anymore , forefoot reconstruction  is considered "salvage surgery".  The heads of my metatarsal bones have been removed so I don't get the “walking on marbles” feeling anymore.

                                                              Try walking on these

With good orthotics and an ankle brace my gait looks pretty normal and my feet are comfortable.

  
Even having the above operation does not stop RA It can progress through the foot. It progresses to the midfoot and then to hindfoot. At the hindfoot it can seem that you have pain in the ankle but it is really lower down in the small bones below and in front of the ankle. They can be fused to prevent pain, or they may also fuse on their own.

It's well worth the struggle to gain knowledge and become comfortable with the correct terms to describe your symptoms. It helps you to join your care team.

Better Results With Team Treatment

When I was first diagnosed with RA I was lucky to be presented with a first class care team.  That happened in 1982 when starting a a stronger and more effective drug with worrisome side effects was far less common than now.  These days, when specialist doctors are so busy, you usually have to find the other team members on your own.

In the 80's many doctors still used the old treatment pyramid.

                                       Encyclopedia Britannica

The bottom step of the pyramid (behind the camels) consisted of Aspirin and you had to go through all of the less useful drugs to get to the top and graduate to an immune suppressant drug or DMARD like gold or methotrexate.  This meant that by the time you were prescribed an effective drug, you already had joint damage. This approach is now obsolete.

Now with (ideal situation) early aggressive treatment most of the people I see in rheumatology clinic waiting rooms look quite healthy.

                                       thecanadianencyclopedia.com

Maybe not as healthy as the Canadian women's winning hockey team shown above but now, when I am at a rheumatology appointment I look around and wonder if the people I see are patients or healthy friends who are waiting for patients.

Back to the First Class Care Team

In 1982 when you started on a "dangerous" drug for a serious illness like RA you were often admitted  to a hospital, as much for the education as for the monitoring, and that is where I met the team of health care professionals who have done so much to keep me going, even as they changed over the years. Future posts will go into more detail on the various types of help I received.

The physiotherapist stressed exercise and also introduced me to paraffin wax baths for the hands. She acted like a cheerleader some of the time and helped with hope and optimism.  The occupational therapist told me about resting splints and wrist braces to help with the pain, and introduced me to devices for help turning keys and knobs and opening doors, and also for help in the kitchen.  

A right angled knife is my #1 kitchen device

The pharmacist talked to me about the new drug regimen and precautions to take. I was sent to a foot clinic where I got orthotics to help with my sore feet.  Without orthotics I limp, so I always wear shoes. I met a social worker for advice on how to proceed with work and life.   

Later I realized that a nutritionist would be a big help also and she solved a problem that I had even before I developed RA.

                                               indulgy.com
It's wise to find an excellent dentist and a dental hygienist you can trust. Having a long term consistent relationship means they will spot changes you might not be aware of, and they'll spot signs of Sjogren's Syndrome early. In fact there is a suspected link between rheumatoid arthritis and periodontal disease.


You're the one who owns the chronic illness, so you'll want to be on the lookout for good professionals to help you deal with it.  If that is not affordable there are websites where you can get specific advice and tips that are general.  I'd suggest using the advice and tips you can get from the self management courses to find resources. The official sites of the organizations that deal with problems you have are also learning areas. I'm thinking of The Arthritis Society ,the National Institute of Health ,the Sjogren's Syndrome Foundation and the Sjogrens Society of Canada to name only a few possibilities.

They're not all like Dr. Kildare

Of course your doctor will have a starring role on the team and may have good suggestions for other health professionals and resources that will be useful to you.  You can't just leave it all in his hands though - you need to be as proactive as you can manage to be and work on educating yourself about your health.
                               
You have to be the captain (or co-captain) of the team and also assemble them, with help and advice. It's great to count some family and friends as team members, but watch out for the negative ones, or those who say you should just get out more to feel better. 

I would also like to mention the support of online groups and forums as well as Twitter as a potential big help. If you pick the right support group you may make friends for life, and they know exactly what you're talking about when you are having trouble dealing with symptoms.

                            Friends hanging out near the hospital

It Used To Be Different

I have had RA for 30 years now.  It took me a year and a half to get a diagnosis and that was the worst period in my life.

First and worst was the sore feet.  At the time I worked in a bank and assumed that being on my feet all day was the problem - that and having 2 very active boys at home.  My feet got more and more sore as time passed.  I felt like the Little Mermaid when I got out of bed in the morning - as though I were walking on knives like she did to become human. When the symptoms were at their worst I crawled to the bathroom.

                                                    From NRAS.org.uk

At the same time my hands and wrists were sore, hot and swollen.  Eventually I wore elastic bandages (like you use for sprained ankle) on my wrists at night in the hope of some easing of the pain.  And I have talked before about the "miracle" weight loss and total exhaustion. A systemic illness like RA causes weight loss - how could I have thought it was the switch to Diet Coke?

When you feel that bad it is hard to think of solutions and harder yet to act on them. I tried 2 different doctors who were unable to help.  Finally, at the end of my rope, I went to the foot clinic at my local hospital.  The orthopedic surgeon on duty had residents helping him at the clinic.  They came first and had a variety of theories but when the Dr came for a look he listened and told them this: "Send the lady for a blood test."

And there it was.  The answer to the puzzle and a quick referral to a rheumatologist.  The new specialist was on vacation so the anxiety level rose but eventually I saw him.  He pulled out the famous treatment pyramid and explained that since I had 25 active joints and a very high ESR as he could see from the blood test we would start near the top with an aggressive treatment (for that time).  That meant gold injections.

And here is a difference between then and now.  Rheumatology actually had hospital beds allocated to it and I was admitted to the hospital for 3 or 4 days for blood tests and monitoring of the treatment.  

The centerpiece of this stay though was the education component.  I talked to the pharmacist and the nutritionist and was fully exposed to the occupational therapy and physiotherapy options available. 

I was given exercises for hands and body by the physiotherapist and occupational therapist and learned joint preservation techniques. We tried out a paraffin wax bath for the hands. It feels wonderful for a while after you have it but unfortunately the effects don't last. 

Model of foot sitting on orthotics

I was given a life saving prescription for orthotics and ideas for utensils to make cooking easier. And  how could I forget my trusty splints - they have been invaluable to me for all these years.

Resting splint to wear at night

This was all a big help in trying to restructure my life after I went home again.  It was reassuring to have a plan - still very depressing of course - but so necessary in the time before internet.  

It felt like there was a ready made team that would help me and that helped to make me feel less isolated and unsupported.

Strength and Power with RA

It's been 30 years since I was diagnosed with RA.  The onset was classic in its symptoms but my GP at the time thought all I needed was aspirin.  He said take 12 a day and come back in 3-4 months.  I thought the weight loss that was occurring was due to switching from Pepsi to Diet Coke, and the sore feet were from standing at work.

The result after diagnosis was a long battle with illness and no exercise.  How could anyone expect me to be active?  It was all I could do to keep going. 

I saw a physiotherapist from The Arthritis Society sometimes and she recommended one exercise that stuck with me.  That is the exercise where you act as though someone is trying to stick a knife in your bellybutton.  You draw it in your muscles and tense them while you hold them tight for as long as possible and if you can, try to pull the muscles up toward your chin. 

Well anyone can do that lying in bed so I did it for a few months regularly.  Sometime later I was enrolled in a clinical trial which required frequent visits and doctor exams.  One day I was examined by a new rheumatologist.  In feeling my abs she said I had good muscle tone!!

That was a turning point - it amazed me that so little work could have such an appreciable effect.  The trial did not work out - but I was enthusiastic about exercise all of a sudden and started to work on Pilates in a modified form called Arthro-Pilates which is taught by a Lori Weisbrod. She has inflammatory arthritis herself. Her site is http://www.arthro-pilates.com/  It felt a lot safer to be taking lessons from a person who knew my limitations and is an amazing example.

Lori Weisbrod

Now I have more muscle and strength and maybe I could go farther. After all if a 95 year old can be a yoga master and if someone who starts at age 56 can become a sculpted bodybuilder in her 70s I am sure I can develop more strength and power too - I'm not even a senior yet.