Professional Rheumatoid Arthritis Patient, part 2: Fired! | Rheumatoid Arthritis Warrior

Professional Rheumatoid Arthritis Patient, part 2: Fired!

Here is another chapter in my life as a professional patient.

trial glasssesThe other day I set out on one of my regular pilgrimage days. There are several of these days every month. This time our first medical appointment was the ophthalmologist. My son and I made it to the car by 8:30. It is hard to move first thing in the morning.

When we arrived, there was the typical new patient pack to fill out for my son. (I was an established patient.) I used own my own pen because it is light enough for me to hold. As I filled out the first 2 blanks, I was tickled with myself: My handwriting looked familiar. It looked like my own handwriting. I said, “Hey my hand must be doing okay today. I haven’t seen that handwriting for a while.” It made me smile.

That lasted less than a minute. My fingers got tired and started to slack off. That lasted the next minute. Then, my fingers hurt too much to write. So, I scrawled as little as possible as quickly as possible. I got my son to fill out part and turn it in for me.

Soon we were off to the back for lots of tests with funny contraptions. What is that thing we looked in to view a hot air balloon? The girl said she could see how I see and measure my prescription automatically.

I got to wear a trial pair of custom-made specs. Like the look? I told her they were lovely, but I couldn’t buy them because they were just too heavy. Too much stress on my neck.

They are really nice at that office, but after 2 1/2 hours, we were eager to leave. On the road again… a list of blood tests and a much overdue TB test.

However, I can never resist the pit stops that are “right on the way anyway,” like the Sam’s club which had finally opened in our county. Usually, we go to Sam’s an hour away from home. Who could resist a Sam’s club “on the way”? I do buy milk and eggs and juice for 7, after all.

At Sam’s, my son does most of the lifting. However, it is not easy to be idle. Stubbornly, I lift a gallon of milk and shout out to him to catch it as it falls. He’s seen that before, so he’s fast on his feet. Nice save, son!

My hip, my knees, and my elbows are not enough. My feet are screaming by now. I keep telling my son, we have GOT to hurry and get out of here! It has gotten to the point where I am wondering how I’ll make it to the car.
Yummy rotisserie chicken samples remind us it’s lunchtime. Mmmm.

Like a cherry on top

Checkout. Membership card. Double-take. “Is this YOU?”
“Yes,” I say.
“Nice picture. Pretty hair. Doesn’t look like you.”I pretend I did not hear, “Hmm?”
“The hair was very pretty. You don’t look like that anymore.”

I pretend I am not hurt. “It is raining. I put my hair up to keep it dry.”

I lean on my son as I shuffle and drag my feet to the car. We are trying to fit the milks into the cooler when we realize: EGGS! I fall into my seat as he unloads the rest.

Heroically, the young man goes back inside with my cute-hair card and some cash to pick up a couple cartons of eggs. I pull off my sneakers and moan loudly since no one can hear me. I relish the comfortable seat of my Suburban.

The door-keeper was not sympathetic to a teenage boy running back in without his mom. Oh, well. On with the shoes. Slow drag to the door. Door-keeper smiles, “We can let you use the wheelchair.” “Thanks, but I’ll manage.”

“Go ahead really, you shouldn’t feel bad. Your problem is only temporary. It’s not like you’ll need it for long.”
“Huh?” I breathed. “No,” I smiled. I wonder whether I should say more. “This will probably get worse, not better.”
I got straight into a checkout line while he ran off for the eggs.

One more thing is right on the way to the lab and home. Friend just out of the hospital. We’ll stop for only a moment since I have food in the car.

The doorknob is hard. It’s locked. Knocking is painful. The step up is hard. Several minutes of standing to make small talk. I look for something to lean upon. God, help me. My elbow, my feet, my knees are killing me. I breathe very deeply and shift my weight. My hip!

Finally, struggling to the car. Shoes off. How will I ever make it home?

Fifteen minutes. Home at last. I gather up as much as possible: papers, books, shoes, cup, purse, keys… “Momma stop! You don’t have to carry all that.”

“I know, but I can’t come back to take any more,” I protest, staggering into the house. Collapse upon the sofa. Absolute exhaustion. Finally at rest, I become conscious of how many places I hurt. Every joint is sore.

Breathe relief to be finished. “I’m sorry, hunny. We never got lunch! It is 2 o’clock.”

But, I am wrong; I did not finish! I realize I never made it to the lab!
I guess I am not a very good professional patient anymore. Hey, do you think I could get fired?

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Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

9 thoughts on “Professional Rheumatoid Arthritis Patient, part 2: Fired!

  • July 31, 2009 at 11:01 am
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    I had never thought of myself that way … professional patient. I like that. I spent 2.5 hours with my rheumatologist yesterday getting xrays, bloodwork and setting up a start day for new medicine. I have to go back for a TB test next week. After that I went home and had to crawl around on the floor of my shop taking a steering link off of my riding nower. I drove 80 miles north to my dad's house and cut and welded a new piece on the link (I don't have a welder) then on the way back stopped and took my daughter out to dinner last night. It was 10 pm when I arrived home and I was hurting so badly, I could barely walk from the truck to the house. All in a days work for a professional patient. Oh by the way, you're beautiful. Never let what anyone says cause you to think otherwise.

    Reply
  • August 2, 2009 at 7:43 am
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    I think all of us can relate to your day. I guess that is why I just stay home.

    You have a great family to help you. Bravo to them.

    Reply
  • August 2, 2009 at 8:08 am
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    I stay home most of the time too.
    Yes, I could not do it without my kids! Kinda scared about when they grow up and are gone. :/

    Reply
  • August 2, 2009 at 5:19 pm
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    My kids are 30 and 32 years old and they are still nearby, checking in every day with me, asking how I'm feeling and seeing if I need anything. Not to worry! 🙂

    Reply
  • August 2, 2009 at 6:24 pm
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    LOVE LOVE LOVE the glasses! They are definately you! Aren't kids a blessing? I feel bad tho because it's way too early for them to be taking care of me. They shouldn't have to worry about that until I'm old and crusty. I'm only 39. I still have a loooooooooong way to go…..I hope. The perception of beauty is different for everone. If that cashier new you in the context that I know you, there is no way he would think that you aren't beautiful inside and out! Angie

    Reply
  • March 31, 2010 at 4:38 pm
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    Boy, Thanks for shring with us, Kelly. I can relate to so much of what you’ve written about your day. I was diagnosed with RA in 2007. I feel so fortunate that I had 55 active, healthy, wonderful years pre- RA to raise my 3 children, be a K-2 teacher 10 years and do all the mom activities without a thought of the pain and disability that goes with my daily life now with severe RA. I just wish I could feel better to be a better grandma to my 6 little sweetheart girls all under 5. I wish I could just jump in the car and go visit and help their mommies and play and do things with them. I keep on trying meds, unsuccessfully so far and feeling crappy with side effects, trying to keep hopeful that there is a med that will help, if not at least hold off or slow my progressive disease. I’m trying to be patient with my newest med, Actemra-one week since my first infusion -I have to keep optimistic and hold on to hope that I will see some measurable improvement amidst the side effects (not as bad as with the others), fevers, fatigue, pain and immobility. Here’s to all you professional RA patients-I wish you all better days ahead. All we can do is do the best we can and thank goodness for those people in our lives that we love so much and show us love. Bless them everyone.

    Reply
  • June 29, 2010 at 9:06 am
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    Awww, it hurts me to read your post, remembering. I know it seems endless and discouraging, but maybe you’ll get lucky and find just the right cocktail of meds that will really help you, as I have. Either that, or with age, it sort of burned itself out! I’ll never know, because I don’t plan to go off the meds to find out. Yes, I have deformities that are troublesome and somewhat limiting, but to go from not being able to lift a cup or sign my name to being able to write and type, to get up and down from chairs, and rarely have flares? Heaven! I wish the same for you–keep your eye on the prize!

    Reply
    • June 29, 2010 at 9:14 am
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      Oh my! I can’t imagine. Thank you for the encouraging word!

      Reply
  • February 20, 2011 at 5:56 pm
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    Hi Kelly,

    ‘Pace yourself’ is what I’ve learned through experience. This is a marathon, not a sprint. I don’t have tasks that I can ‘do on the way’, I have single function trips if I have any and my aim is to get through that and only that.

    If I go to the supermarket, I don’t do any other errands along the way. I know I’ll be exhausted by the time I’m finished, so i don’t plan on doing much else for the day.

    My week is planned around one major task per day if any at all!

    Keeping in mind that these days, my arthritis doesn’t seem to be as angry as yours (although there are days!), and I don’t take anything but pain meds so i don’t have too many side effects to deal with.(just deformities)

    After over a decade of active RA, I’ve learned to allow myself to recognize practical limitations, and pace myself accordingly, otherwise I spend all my time recovering from overdoing it! I’ve found that letting go of what isn’t absolutely necessary and focusing on what is also helps. No more ironing for me and my husband also knows that he cannot ask ‘while you’re out could you pick up…?’

    Hope you find the right mix of meds and pace.

    Cheers

    Tracey

    Reply

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