Professional Rheumatoid Arthritis Patient: RA Warrior on the Road

A Window into the Life of a Professional Patient

professional patient road asphaltTuesday morning I watched my clock tick up to the alarm time of 6 a.m. I hated to get out of bed early. It is my comfortable place. In years past, I eagerly shot up at that hour regularly to garden. But no longer.

These days, I don’t want to move because I will find out where it hurts. So I try to absorb the fluffiness of the feathers into myself. I want to save up the comfort and take it with me.

Tuesday, I dragged myself to the kitchen sink to wash my hair. It takes about an hour for me to wash and blow-dry, so I only do it 2 – 3 times per month. But I feel like a princess. Compared to when I remember I doing it every 6 months!

I was out the door at 7:39. Victory – only 5 minutes behind!

Uh-oh. Big problem. I forgot breakfast. No food, no Advil. I forgot my banana. My daughter brought me a Pop-Tart, just in case. Sometimes, it’s like she’s the mom. Too much sugar I tell her; only if I get desperate.

I have my first appointment of the day at 8 a.m. The physical therapist and I discuss a variety of topics and I try to tell her about my new blog. She’s trying to understand what Rheumatoid Arthritis is. I appreciate her effort.

My second appointment has been moved up to 9:45. So, I do the math and figure out there is time for a quick BOGO egg biscuit at McDonald’s. I force myself to eat it so that I can finally take my Advil and vitamins. (It’s just too hot and tasty, you know?)

We shoot down I-95. I’m early to the endocrinologist: just the usual, in and out. Weight, vitals, and meds list. Pulse high from coffee. She laughs about it.

No mention of RA. Is the nurse even curious why I can’t walk right? Weird. I know it’s all in my chart.

The next appointment is at 10:50: the good internist. Once again: weight, vitals, and meds list. Pulse much lower already. We laugh about the coffee again. New blood orders.

There are still errands to run and chores at home, but a load is lifted. I feel free as a bird. I won’t have another day like this one for at least a couple of weeks.

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Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

2 thoughts on “Professional Rheumatoid Arthritis Patient: RA Warrior on the Road

  • June 11, 2009 at 10:23 am
    Permalink

    Hi Kelly. Isn't it amazing how dense our heath care workers can be? I have one who I've seen 3 times in the past 4 weeks and he sees less than 10 patients. he acted like he has never seen me before. It's amazing. And then he argued with me about if the middle joints on my fingers were swollen or not. He insisted that they weren't. I haven't been able to wear my rings in almost a month because I can't get them over my joints. To me that's inflammed. his response, "Oh yeah I guess they are then." My response was nearly, "DUH!!!" but I held my tongue.

    Can I ask, have you ever tried an elimination diet? I have found success with eliminating dairy completely. I know that it was successfull because I haven't been on any medication for a month and a half and my sed rate went dwon with eliminating dairy. I've also started to eliminate gluten. It's harder tho. A lot of stuff has gluten hidden in it. It might be something worth exploring. I know several people with auto-immune diseases who have done this elimination diet with great success. If it's something you are interested in, mayeb I can help. It does take sacrifice and work but I have found that no amount of pain is worth the taste of cheese or icecream or graham crackers and milk, etc. Ya know that phrase "A momnet on the lips, a lifetime on the hips"? I look at it this way….."A momnet on the lips, a lifetime of pain, swelling, and misery."

    Reply
  • June 12, 2009 at 12:55 pm
    Permalink

    Who trains these guys?

    I'll be following your new regimen with interest.

    Reply

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    Welcome to RA Warrior!

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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