Background/Purpose: In Mach 2020, I was diagnosed with relapsing polychondritis (“RP”), a multisystem, rheumatologic disease characterized by inflammation of cartilaginous structures including the ear, nose, joints, and airways.  The cause of RP is unknown and there is no cure.

After my diagnosis, my family members contacted the RP Foundation to learn about this rare, debilitating disease.  The RP Foundation was a tremendous resource and provided educational material and contact information for RP experts at the National Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS) at the National Institutes of Health (NIH). The RP Foundation also introduced me to an online RP support group.

Intervention:

To share perspective and learn how to better manage my disease, I joined the support group.  I learned the importance of lending hope to my peers and borrowing it from them, when needed.  I am also learning new activities that provide a sense of well-being without requiring physical activity and robust breathing.  One new hobby that I find personally rewarding is writing.  I wrote the poem below:

Only in my dreams
Can I do the things I used to do
To take long walks in the woods
Go for bike rides with my love

Only in my dreams
Is my soul set free
To roam where it wants
To take the grandkids putt-putt
Or play yard games with them
On nice summer days

Only in my dreams
Can I work in my yard
Fiddle with landscaping
To putz in my man cave
Without gasping for air

Only in my dreams
Can I enjoy doing all the things
That made me “ME”
I guess you would say
You see I’m not a sitter or idle person

I will continue to fight and battle
That is what I know,
That’s what I was taught
But excuse me
If I turn to be early tonight
Because I can be me
Only in my dreams.

Maintenance:

Recently, I was in the hospital fighting for my life after being infected with COVID-19. Thanks to my wife and family, a talented and dedicated medical team, the members of the RP Foundation, and the support group, my spirits were lifted, and I mustered the strength to fight my way back home.  My family and team made a positive difference in my recovery.

I have been a life-long fan of professional hockey and was overjoyed when the local team won four Stanley Cup championships.  While I was recently in the hospital, my peers posted videos with inspiring messages from professional hockey athletes. These athletes encouraged me (specifically) to keep fighting RP and the coronavirus.  This support was fantastic, especially because hockey is an important part of our family.

For generations, hockey has provided great times together at ice rinks during tournament weekends with my children and grandchildren. One of the most difficult and frustrating things about RP is that I have had to stop attending family hockey games. My absence has been difficult for my family too. (One of my sons and one of my grandchildren are goalies on hockey teams.)

Quality of Life:

The expertise of my medical team and the kindness of my wife, family, RP Foundation, and the RP support group helped me survive and has inspired me to help others.  I will be forever grateful for the care and support that I received.  I am also committed to advancing RP research. As one of my fantastic doctor says, “Where there is research, there is hope.” She is correct!

Dan & Debbie Smith and family

Relapsing Polychondrtis Foundation logo

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/only-in-my-dreams-can-i-do-the-things-i-used-to-do-where-there-is-research-there-is-hope/