Posted by: Catherine Lugg | April 16, 2013

Towards a Better Normal–Part 1.

I’ve really been doing a lousy job of maintaining this blog. Additionally, my scholarly writing has been taking a big hit as of late. Over the last few months, while the switch to Enbrel has helped, I had a major failure trying to taper Prednisone (aka “Satan’s tic tacs”) that made me as sick as I was prior to starting treatment for rheumatoid arthritis. For example, in March, I was falling asleep while driving–always a very bad sign. The ensuing weeks of being sick as a little yellow dog has forced me to sit down and make some hard realizations and decisions.

1. I have gone from having early stage Rheumatoid Arthritis (RA)  to severe and aggressive RA in a fairly short amount of time. To wit: Over the Christmas holiday, a nephew who is a baby medical student helpfully pointed out all of the joint damage in my hands. He had just had the rheumatology unit and was more than eager to share ALL that he had learned (like an over-eager puppy–*SIGH!*). And last year, my podiatrist promised me that I would keep a “functional foot.” As my toes now move towards becoming joint origami, I now have a much better understanding of what that promise actually entails.1

2. While feeling horrible during this March and April, I decided to look at the long-term outcomes for folks with RA, and have had some hard “come to science,” as opposed to “come to Jesus,” moments. RA does eventually kill, reducing your life-span of 3-15 years on average,  but first you get to have nifty neato joint replacements and, if you’re really unlucky, cardiac-vascular events (heart attack, stroke, etc.). Stroke is what eventually killed my Grandma who had RA (at age 80), though she started having mini-strokes about 3 years before she passed. Last year, I joked with colleagues that I was saying “no” to professional opportunities because “they weren’t worth a hip replacement.” Unfortunately, today that looks like a more benign outcome. Also, the disability data are dismal. Of everyone who is diagnosed today with RA, 30% will be on permanent disability in 4 years. That percentage goes to 60% in 10 years. So, time is not on my side with an incurable and progressive disease. I need to do all that I can to avoid becoming very ill and to delay becoming permanently disabled and unable to work.

3. Last year, my orthopedist wisely banned all professional travel–permanently. At the time, I was utterly appalled since the research conventions, where one presents their research for critique, is the expectation for professors. But, she was and is correct. I’m really too sick, and will always be too sick, to ever participate again. To be blunt, the conventions are not worth a hip replacement–much less a stroke. Fortunately, I’m blessed with smart and ambitious doctoral students. So, I am increasingly co-authoring with them and they will go to the conventions and present.

4. Clearly, the days of researching and writing for hours on end during the academic year are, well, at an end. I can teach and I can coach dissertations, but if I have anything extra to do on that specific day (like complicated business meetings, medical appointments, LOTS of reading, writing, etc.), I will crash the next day. Consequently, the “wages of sin” include bone crushing fatigue and pain after enduring the 3 AM joint flare from hell–it feels like my bones have been set on fire. If I have too many of these “crashes” in a row, I will become dreadfully ill (think of the worst combination of flu, bone-crushing pain, mononucleosis, and a hangover–for weeks on end). My summers are now reserved for writing when I can, since I’m clearly too sick to write during the academic year.

5. Yet, what has really helped me think things through has been the example set by the best teacher I will ever have, Nathen E. Jones (“Doc” Jones, for those in the know). But that story is for my next blog post. Stay tuned!

Notes

1. Lots of surgery–WHEE!!!

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Responses

  1. I stand next to you my friend. Well spoken, we are partners in RA crime! Hang in there! I wish I could say better days are ahead. But at least you are not alone!

  2. Extremely brave post Cath. Those of us with this disease know what a struggle coming to this stage of acceptance is,and how difficult it can be to accept our new reality when it feels so much like admitting defeat. Thank you for sharing your experiences openly, hopefully in doing so you will continue to spread awareness, which in turn can only bring understanding and support for those of us who hope to share your “better normal”.

  3. Cath, the description of the results of ‘pushing’ are is perfect for those without RA to comprehend what folks w/RA experience.

  4. Hang in there, Cathy. I can’t imagine what it must have been like to come to this kind of realization. I hope that others who find this post will understand what the devastating effects of this disease are, as I just did.

  5. Thanks for a wonderful blog post Catherine. I’m so sorry that the RA is interfering with your career and crushing some ambitions. I’m in a similar situation in that I’ve had to go part time and am severely limited in what I can do at work these days. Thank goodness for the (UK) Equality Act or I’m sure I’d be out of a job completely by now. Keep fighting and keep writing. As you say, we must keep working towards a better normal…..love as ever from Naomi.


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