Remembering

Today we attended a Memorial Day program in our community.  It was very nice and a Vietnam veteran gave a touching speech that was very moving.  I kept hearing a word that just stuck in my mind – remembrance.  I couldn’t help but think of remembering in my life – specifically remembering what my life was like before RA. 

I remember those ‘good ol’ days.’  I participated in competitive sports and fitness all my life.  I can remember the first time my Dad took a baseball and hit grounders to me to practice.  I was about 7 years old.  I had a brand new glove and my brother and I were taking turns catching the grounders.  Unfortunately, on my first turn the ball found a rock on the ground and took an unexpected bounce – right into my throat.  I coughed a little and looked at my Dad, who immediately said ‘pick up some dirt and rub on it, you’ll be fine.’  And that I did, toughing it out as best I could. 

I could do my own home repairs, mow the lawn, garden, run a business, volunteer – well, I could do anything I set my mind to do.  That is, until that infamous year – four years ago when I just wasn’t feeling up to par.  Little did I know what was ahead.  

I remember what it was like not having to go to the doctor every few months.  I remember when the lab tech could hit the vein on the first try.  I remember when I didn’t see a doctor for years at a time.  I remember when I had lots of energy, I could play sports, I could burn the candle at both ends.  I remember when I could take my camera and hike all day. 

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I also remember when it all changed – forever. 

A chronic disease is defined by remembering the previous life, but it also demands the commitment of determination, perseverance and acceptance.  

This journey has not been easy.  There are days I long for what my life used to be, but, it is no more.  I was reminded of the verse in Luke – “no one, after putting his hand to the plow and looking back, is fit for the kingdom of God.”  There is no looking back – only moving forward.  

A new day, each day.  Perhaps a new challenge.  Perhaps a new victory.  Maybe a few moments of remembrance, but no looking back.  My hand is on the plow.  And if I take a hard and unexpected hit, I’ll just pick up some dirt and rub on it – right, Dad!

Donna

 

Branding Rheumatology ?

I was looking at Twitter yesterday and saw a post that caught my attention.  I linked to a blog by a rheumatologist where he referenced rheumatology as a “poor brand.”  Having spent most of my working life in marketing, I found his comments interesting.  Yet, his closing question was the most intriguing.

He asked how to “enhance our brand”?

I never thought of rheumatology as a brand, but it is.  When you consider a consumer product (food, shoes, bedding, etc.), it’s easy to think of a thousand ways you can enhance the brand.  Yet, a medical specialty presents different challenges.

I learned soon after my diagnosis that most people do not have a clue what rheumatoid disease is.  When I mentioned I had RA, their replies were consistently “my knee gets stiff too”.  Even a personal trainer replied that age catches up with all of us.  Seriously?

When I first got sick I visited a clinic close to home.  The doctor had never seen me before, but I think he had a strong suspicion what was wrong.  After I got the diagnosis, I scheduled with my regular doctor who was across town because he had a 30 year history with me.  He kept holding my wrist and was quite shocked at how hot it felt. He commented several times about how hot it was.  I guess he didn’t realize I already knew how hot my wrist was.

A year later I was simply trying to put the puzzle together and asked this doctor about my dad.  As time had passed I could see myself in memories of my dad – unexplained illness and fatigue, how he walked, excessive stiffness and swelling and many other symptoms.  My doctor told me emphatically my dad did not have RA.  How did he know?  If he had never seen or felt of a wrist in flare, how would he know with someone else? Would he have asked the right questions or ordered the appropriate labs?  While my doctor did not tell me anything about the disease, he did schedule me with a rheumatologist and he found an explanation via a medical website and emailed it to me.

If rheumatology is a brand, the first step to strengthing this brand is education.  Yet, this education should not be limited to the medical community alone.  It should be a combination of education starting with the ‘first consultants’ in medical care – internists, general practitioners, even hospitalists and emergency physicians.  The education should continue with the general public.  Arthritis should not be routinely paired with aging, nor with a golfer and a specific drug.  Last, the education must also include the rheumatologist because while they are the experts in diagnosing and treating rheumatoid diseases, they should also understand that the patient holds critical information they should seek out and consider during each visit.  The patient should also understand the importance of the health assessment questionnaire as their input into the evaluation process – and – open communication between patient and rheumatologist will strengthen the partnership to ensure the best care possible.

In branding you must first identify perceptions – how do others understand rheumatology.  I believe we are seriously lacking in this area.  You must also identify the value of rheumatology to others.  This point is dependent on the internists and general practioners as they must understand the symptoms and recommend the specialist.  Then you roll up your sleeves and start working on reaching your audience through a website, educational programs, communication plans, developing white papers for reference and creating marketing/advertising essential to get the message across. You also establish strong relationships within the medical community and with patients, advocates and the public. It should be a partnership on all levels.

Rheumatoid diseases are complex and while there have been many advances in treatments, if the information does not get to the right people the patient has lost.  Hopefully, everyone in this community can work together, form strong partnerships and  make rheumatology a stronger brand.

Donna

* Special thanks to Dr. Irwin Lim whose blogs on “Simple Tasks & Bent Forks” and “Does it Matter that Rheumatology is a Poor Brand” inspired my topic today.  http://bjcconnectedcare.com/2013/05/simple-tasks-bent-forks/

 

Private or Public

There is something peaceful about being a private person.  It’s like sitting beside a lake that no one knows about.  You can enjoy the peace of the moment without intrusion or interruption.  The question then becomes what do we gain by being private.  

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When I was first diagnosed, I was completely lost, concerned and afraid to tell anyone.  After a few weeks on prednisone, I felt better and that allowed me to be in full denial, which is where I stayed for a long time.  Even though my life was changed dramatically, I was still unable to deal with the permanancy of what had happened.  

I will never forget the first rheumatologist I visited.  He said “you need to lose that deer in the headlights look you have right now and get back to your life.”  Huh?  He had just confirmed I have a chronic disease and he wants me to do what?  Then he handed me a legal document to sign stating I understood the risk of take the medicine he was prescribing for me.  Warm and fuzzy feeling – no!

For some time there were only a few people who knew of my diagnosis.  About a year later there were a few times I thought I would be brave and share. However I found the response was generally the same – “yeah, I’ve got some stiffness in my knee, too.”  

I volunteered at an Arthritis Walk recently.  It felt good.  It felt good because there were people there just like me.  They understood.  We shared an unspoken bond.    One lady told me that her 2 year old son had just been diagnosed a few months earlier.  We were having heavy rains the day of the walk and she told me she left him at home because the rain would make he feel terrible.  Then she said, I don’t know how you’re doing this, with the rain, I know you must feel really bad.  

I was surprised by her comment.  Finally, someone understood.  

Did you initially tell others about your diagnosis or did you decide not to tell?  Why?  Do you think people understand this disease?  

Donna

 

Rainy Days, what they teach us

I participated in the local Arthritis Walk today.  We’ve been planning for this day for several months.  I’ve participated in the Walk for four years.  After my diagnosis it was something I needed to do – for myself.  That first Walk was memorable.  I suppose the adrenalin was running strong that day.  I finished the Walk.  We left the site and I felt great.  We stopped to get lunch and when I exited the car I could barely move my legs.  Lesson learned!

I was excited about the Walk this year.  I had joined the planning committee and was thrilled to participate in the process.  Then Friday the weather reports changed – 5 inches of rain predicted for the next few days.  This morning we had to rise early to get to the site for final prep.  It was raining, heavy rains, and it continued to rain steady most of the morning — but what a blessing.

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As the time approached for the start of the event, I was blessed to see the many people who came to support the Walk, even in the rain, mud puddles and cool temps.  They huddled under tents, played games with the children, talked about advocacy, enjoyed some snacks and talked with sponsors.  Some walked for themselves, some for family members and other for friends.

I had the opportunity to talk to a lady whose son was diagnosed at 14 months.  She said he was at home because the rain caused so much pain for him.  She said she felt for me, being there in the rain.  As she walked away I thought about her comment.

Rainy days can be painful, but today, an especially rainy day, taught me something special.  RA is very much like the weather.  I have no control over the weather.  Sometimes it’s good and sometimes bad.  It doesn’t always do what I want it to.  Sometimes it messes up my plans.  Sometimes it just causes me to curl up on the sofa with a warm blanket and a soft pillow.  I can’t change the weather and I can’t change my RA, but I can learn to deal with it.  I’m not alone in this battle, there are many others who share my same fears and pains and somehow that makes a difference.

Yes, it was a rainy day, but such a blessing.

Donna

 

A Valuable Resource for Those with RA

In the past few months I have found a tremendous resource on the web.  The blog is called RA Warrior and is written by Kelly Young.  I think Kelly is a modern day hero.  When she was searching for answers about RA/RD, she was unable to find any.  As a result, she built what has become the largest website about RA, a disease that has impacted her life.  Since I have been following Kelly’s blog, it is obvious that her personal vision is for others, including researchers and physicians, to better understand this disease from the perspective of the patient.  

Kelly more recently founded the Rheumatoid Patient Foundation because those with RA had no voice. 

RPF issued their first white paper – “Unmasking Rheumatoid Disease: The Patient Experience of Rheumatoid Arthritis.”  I encourage everyone who either has RA or has a family member with RA to read this paper.  

RPF’s white paper is the result of a survey of people who live with RA – yes, people who actually live with the impact of this disease.  The paper looks at patient experiences and reports some information that differs from conventional beliefs about this disease.  

Hope you will take a look at this important paper and the RPF website.  Perhaps you will even consider supporting the Foundation and their work on behalf of those with RA. 

I am very impressed with Kelly’s vision for this foundation, the work she has already done and the goals established that will benefit all people who live with RA.  

Donna