A rheumatoid arthritis patient describes her day to day life and struggles of coping with the illness in an online journal.
I am 31 years old woman with Rheumatoid Arthritis. The disease came on literally overnight 4 years ago when I was 27 years old. I was diagnosed with many different illnesses before it was labelled R.A. I am taking methotrexate, humira injections, steroids and painkillers. It’s been the hardest 4 years of my life though things seem to have turned a corner and I have met a wonderfully supportive partner. For a long time I have tried to fight it and had many different therapies to treat it…
By Elvira G. Aletta, Ph.D.
Somewhere I read that properly diagnosing a chronic illness can take from two to three years. Many of you wait even longer. In the meantime, while the doctors scratch their heads, we’re expected to be happy we’re alive. And that’s if they don’t write us off with “It’s psychological.”
Over the past year, Rheumatoid Arthritis Guy has taught eight different college courses. The largest class had 32 students and the smallest class had 2 students. Each class had, on average, 7 students.
Preparing each one of these courses required quite a bit of work. Not only did I have to come up with a completely new syllabus (I teach my classes in English, and all of these classes were previously taught in Spanish), but I also had to find the appropriate reading materials and then do the usual tasks of preparing lectures, writing exams, reviewing projects, and calculating grades.
What struck me most about this experience was how much I had to learn – and relearn. Sure, I was familiar with many of the subjects, and have quite a bit of professional experience in the areas in which I teach, but knowing something and teaching something can, at times, be further apart that I could have previously imagined.
And thinking about this philosophically, we never really get to completely know all there is to know about something. We just continue to learn more about it, over and over, with each instance adding more insight or raising more questions that had not been considered before.
Which brings me to my rheumatoid arthritis. I get amazed sometimes. I feel like I continue to get to know my illness better and better – which I do. But at the same time, it feels like each new flare and each new symptom is a completely new experience, unlike any previous one – which it is.
And talk about relearning!
I have to once again learn to cope with my hair falling out. (At the moment I’m cool with my shaved head, but a week ago seeing my hair everywhere was driving me nuts.)
I have to once again learn about the importance of taking constant breaks and giving my body time to rest during the day and during the week, especially after my marathon work schedule earlier this month.
I have to continue to learn how to look at my hands during times of distress, when they are pulled way out of shape due to extreme inflammation. (Most recently, this past Friday evening. I just sat there and stared, even though it was quite difficult for the reality of my physical situation to actually register in my mind.)
And I have to continue to learn to pick myself back up time after time, after if feels like someone (the troll under my bed) came out and whacked my entire body with a sledgehammer while I was sleeping. (This afternoon. But I’ve learned that just as quickly as things worsen, they also get better. Two hours later was able to do yoga without a problem.)
Most importantly, I’m learning that when it comes to rheumatoid arthritis, the learning never ends.
And I’m okay with this.
(Oh – in two days I am starting a new class. For the first time this year, I will be teaching a course that I have previously taught. The syllabus is ready. The reading materials have been chosen. The tests are written. I have no doubt, however, that there will still be much that I have to relearn.)
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy.
A little under two weeks ago, my hair once again started falling out. I still remember the exact moment when I noticed this current round of hair loss. I was in a private tutoring class, and had just put some blank paper on the table in front of me, when there they were – strands of hair everywhere.
My initial reaction was one of minor annoyance. “Here we go again…” I just brushed the hair away from my note paper, and continued on with my lesson.
Over the next few days, while I wasn’t necessarily denying that my hair was falling out, I wasn’t necessarily paying too much attention to it either. I was just moving on with my busy schedule. My biggest concern, at the time, was squeezing in some time for a haircut. As soon as the first opportunity arose, I went to my hairdresser and asked for my usual cut. On second thought, make it a little shorter than usual, I said.
I walked out of there a happy camper. Excellent, I thought. With my short hair, my hair loss is going to be so much less noticeable.
I was wrong.
Over the past week, I could see my (short) hair everywhere. In the bathtub. In the sink. On my clothes. On my laptop’s keyboard. On the table. On my papers. Now don’t get me wrong, I’m not talking about massive quantities…but definitely enough to notice.
And the more I saw my hair falling out, the more it bothered me. My feelings of minor annoyance started turning into major annoyance. I tried putting a brave face on the situation. I’ve been through this before, after all, so what’s the big deal about going through it again?
Apparently, it’s a bigger deal than I’ve allowed myself to accept up until now.
So today, with a little encouragement from my partner and my sister, I once again returned to my hairdresser. This time, I asked for everything to be shaven off.
(Many times during my adult life I have shaved my head by choice, and have always received compliments from friends and strangers alike…so I couldn’t really understand my reluctance over the past few days of getting my head shaved once again. I guess it comes down to the fact that in those cases my hair style – or lack thereof – was voluntary. This time, I didn’t seem to have much say in the manner.)
So, Rheumatoid Arthritis Guy is a little more aerodynamic at the moment. This evening, when I was out, I felt a gentle breeze brush over my bald head. It actually felt sort of nice. I think I’ll be okay with this (lack of) hair thing. Am I still annoyed? A little…but at least I won’t have to deal with constant reminders of my falling hair.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Real people living with chronic conditions take control of their lives while empowering others
New York, New York, October 18, 2010 – HealthiNation announced today the launch of its latest series, True Champions, now premiering online and on Video-On-Demand November 1. The latest addition to HealthiNation’s expanding library of education and lifestyle video programming debuts with a focus on rheumatoid arthritis, a condition that affects 1.3 million adults.
“We want to give a powerful voice to people who are true champions for their cause,” said Raj Amin, CEO, HealthiNation. “Video is such an effective medium to tell stories and make emotional connections – a critical and missing part of many health messages today.”
True Champions features dynamic individuals who are either living with or caring for people who have various chronic conditions. These individuals are true champions because they do not define themselves or their loved ones by their disease. Instead, they are reaching out to help others who are battling similar conditions. HealthiNation’s True Champions inspire and educate others by sharing their personal experiences and successful coping strategies, as well as by actively participating in awareness-building activities.
The first five episodes of HealthiNation’s True Champions series each run 2-4 minutes in length and feature Melinda Winner who has rheumatoid arthritis and is an accomplished cookbook author, public speaker and arthritis advocate. Throughout these episodes, Melinda shares her candid and empowering perspective. Melinda has several forms of arthritis but strives every day to live her life to its fullest, and in particular, to help as many people with arthritis as possible do what they love despite their pain. Melinda has her own web site, www.cookingwitharthritis.com where she helps those living with arthritis help regain their independence in the kitchen.
The True Champions series complements HealthiNation’s education programming, which includes videos covering more than 100 condition areas.
HealthiNation is the premier health media brand that develops, produces and distributes digital programming that educates and inspires people to make healthier choices. Our award-winning video programs are developed by leading physicians and television producers, covering medical education as well as lifestyle tips, personal stories and entertaining original series–all with the mission of helping people take actions for their health. Programs can be seen through distribution partnerships with leading cable companies and internet properties that reach over 40 million unique users online and more than 32 million digital TV homes. HealthiNation is headquartered in New York City, and its investors include Intel Capital and MK Capital. For more information, visit www.healthination.com
- Accepting Chronic Pain: Is it Necessary?March 27, 2015 - 9:09 am
- Harvard Gazette: A Journey Into IllnessJanuary 12, 2015 - 4:19 pm
- Health.com: 11 Famous People With RAOctober 1, 2014 - 9:50 am
- Arthritis Broadcast Network: Spotlight On Arthritis SuperheroesSeptember 10, 2014 - 7:34 pm
- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am