Turtlemom and RA Warrior at ACR October 2013
Kelly Young, RAWarrior, is holding a Blog Carnival! The topic is “What difference do you think it would make if it Rheumatoid Disease were recognized for what it is by everyone – the general public, media and marketers, pharmaceutical companies, U.S. National Institutes of Health, the Centers for Disease Control and Prevention, the American College of Rheumatology, all healthcare professionals, your neighbors and your family…?”
In a dream:
Before meeting my husband for lunch and then my afternoon cardiology appointment, I decide to take a “walk” downtown, browsing the shops, in a “World Aware of RD.”
I start at the County Courthouse on the square. All the flights of stairs into the building are newly surmounted on each side by gently inclining ramps. The elevator inside has been revamped to hold 2 wheelchairs at a time. The floors are smooth, and the crevices between the rooms upstairs have been filled and smoothed over.
After visiting the handicap-accessible restrooms on the second floor, I ride down the elevator and exit via the door on Pike St. The walkway curves gently around through the grounds under the oak and willow trees to the exit on S. Clayton St. The sidewalks have had their old tiles reset so the sidewalk is now smooth. There are cutaways at each of the intersections, and one in the center of the block for accessing the shops along that side of the Courthouse. I cross, carefully, in the middle of the block. People stop, smile, and wave as I scooter across the street as fast as I can!
In Red Hats for Us, a little girl, accompanying her grandmother, says, “Granny! Why is that lady riding a scooter in here?” Her Granny winks at me, and says, “Laura, that’s Mrs. Riggs. She has Rheumatoid Disease. She can’t walk far or long at a time, and she has problems holding things in her hands. She lost her voice because the disease affected her voice box. When you go over to shake her hand, shake her wrist so you won’t hurt her hand. Go on, now.” Laura comes over to shake my wrist. I smile and say, “Hello, Laura, I’m delighted to meet you.” She smiles and I smile at her.
Later, I meet my husband at McCray’s Tavern on the Square. The Maitre’d opens the door and holds it for me. He smiles at me as I come in. He shows me to a table that can accommodate my scooter or a wheelchair. I turn the seat of my scooter so I can face the table to eat.
After lunch, we go to our van. It is parked in a handicapped slot near the front door. The curb is cut away with a gentle slope onto the accessibility lane between van spots. I can get off my scooter at my door. My side is equipped with a handle to help me get in, but my hands won’t let me use it today. Instead, I use a Handybar that I can rest my forearm on instead of using my hands. My daughter has added some padding so my forearm bones don’t get bruised.
We drive down into Atlanta. Each intersection within the city limits has been re-done with cutaway curbs, well designed ramps, and wide pedestrian (and wheelchair and scooter) lanes. The crossing lanes are wide and have been smoothed to reduce the risk of tripping or tipping.
When I get out of the car at the doctor’s office building, I get on my scooter and approach the door. I touch my cane tip against the automatic door opener panel, and the door slides into the wall, preventing me from being smashed by a heavy, medical building door. I enter the building, and signal for the elevator. When it arrives, I drive into the elevator. A woman there asks me why I’m riding a scooter. I tell her Rheumatoid Disease and prepare to explain. But she’s ‘way ahead of me! She says, “Oh, my aunt has that. She has heart complications and is visiting the cardiologist today because the covering of her heart is affected.” [Oh, my! Someone who knows and understands! Oh, Wait! This is MY fantasy – of COURSE she knows and understands!] We chat as the elevator slowly ascends. We exit at the same floor, and go into the same office. There is no “door” per se – just a doorway opening. I don’t have to struggle with anything. My husband arrives about 5 minutes later. I’ve signed in, and am chatting some more with my elevator “pal.”
I can tell my husband is worried – about me. I take his hand and squeeze it gently. Finally, they call my name, and we both wheel in on our scooters. The cardiologist (also my husband’s cardiologist) reviews my records from the rheumatologist, then carefully listens to my chest and orders an EKG, a chest X-ray, and an echocardiogram. If these are normal, I may not need additional tests. If not, I may need a cardiac CT and a cardiac MRI. They talk a few minutes, then the physician leaves and I go to the room for the EKG. Next will be the chest X-ray and the echocardiogram, but they must be done over at the hospital tomorrow, so we leave.
The next day I am so tired, stiff and sore, but I must go get the chest X-ray and echocardiogram. Another 30 miles each way – a 60 mile trip. They get me in and out in a record 2 1/2 hours! I wish I could say we stopped for lunch at Ted’s Montana Grill, but that is ‘WAY too rich for our pocketbook! Instead, we lunch at a nice little restaurant in Peachtree Battle Shopping Center. Tomorrow probably won’t be so great, especially after these two days of overdoing. I think about the day before. It was as if, suddenly, everyone I encountered understood. Hands, feet, heart, incapacity, yet they did not look at me: confused, disbelieving, irritated, pretending I was not there, or clueless. What a difference from years gone by!
I check with my doctor’s office by phone about the RPF clinical trial they applied for me to be on. I’ve been accepted! I start in 2 weeks! I’ll have to write a thank-you note to RPF! What a difference Rheumatoid Awareness makes!
I’m feeling happier than I ever believed I could!
Unfortunately, however, at this point I woke up! Let’s make the world I described above happen! Please visit the RPF website and learn about Rheumatoid Disease. Then become a member. The Rheumatoid Patient Foundation is a 501( c)3 organization; it deserves your support.
Remember … February 2 is Rheumatoid Awareness Day
for more information …
Rheumatoid Patient Foundation. … Rheumatoid Awareness Day.