Living with Sjogrens, Rheumatoid Arthritis, and General Aging

Every day it’s something new … Today, I am not able to hold my tea cup and saucer in my right hand … and I’m right-handed.  Today I walked up the three steps to my front door with both feet on each step before moving up … as my neighbor stared quizzically … Today I finally told my two sons about my diagnosis, because I’m worried about losing their respect, and because I need their help.

With Sjogren’s Syndrome and Rheumatoid Arthritis, there are good days and bad… On good days, I don’t notice the pain so much, I don’t obsess over it, or think about all the things I cannot do that day… I don’t wonder if my kids will think of me as lazy, or if my friends have forgotten me because I haven’t been around as much … I’ve been in bed or on the couch … gaining weight and feeling bad.

ImageOn bad days, I ache.  A couple of days ago, I noticed hardened bumps on the joints of my index fingers that make my hands look like the stereotypical picture of a wicked witch (pardons from all my Wicca friends and real witches.)  I happened to notice when I took a picture of my nail polish on one frivolous-feeling day and uploaded it to a Facebook site with lots of sister girlfriends on it…I had to do a double-take when I checked my status!  Could those be my hands or are those the hands of a strange, elderly woman who’s worked too hard and scrubbed too many dishes in her life?

I was diagnosed with Sjogren’s Syndrome (Chronic Pain) and Degenerative Joint Disease (Rheumatoid Arthritis) in early 2013… and thank goodness, actually … My body had been falling apart and I couldn’t figure out why.  My blood pressure and cholesterol had been on the rise since 2008, when I started teaching full time at a small college… The job that I had so enjoyed as an adjunct professor, had become unbearable, bullying, and at times, violent and the stress was becoming unmanageable through traditional methods … My life has been about struggle, so I chalked it up to just another … but this college, this place was strange … I had never encountered such resistance to progression … such vitriol towards any and all things new or different … it was ugly and it was racial.  But I’d dealt with this before in many parts of my life.  This is not new… why now?  Why is my body responding so negatively now?  My doctor started me on a regimen of pills… I was abhorred!  Pills?  So I refused to take them for six months… then I saw her again, and my blood pressure was very, very high.  She warned me that this is serious and I left her office and filled the prescriptions.

The weight began to pile on … I hardly noticed, until one day I did.  I had ballooned to 242 pounds.  I can’t believe I just typed that.  Two hundred forty two pounds.  When I finally couldn’t take the weight gain any more, and stopping the medication was a no-go, my doctor helped me out.  In 2011-12, I lost 42 pounds, and I hadn’t felt, or looked, that good, for a long time…Image

I used the Spark People program, and it really worked for me… I needed the support and camaraderie the site provides…  So it seemed to reason that losing weight was supposed to help my body feel better, not worse.

But my journey into weight loss is accompanied by a constantly financially-burdened life … In spite of extraordinary intelligence (I’m not bragging, I’ve really just learned to come to terms with it), hard work, incredible opportunities, and the will to do better, I have not accomplished anywhere near my potential, and feel constantly disappointed in that fact.  Coupled with these new physical challenges, it overwhelming at times, and I feel a lump rise in my throat, chest tightens, shoulders rise …

This disease requires me to change the essence of the way I see myself, and as I’m learning, the way others see me as well… I am not accustomed to playing what medical sociologists refer to as the “sick role” … I graduated with honors from Stanford University with two degrees in five years, all while diagnosed with a brain tumor, working two jobs, and completing the requirements for my commission in the U.S. Air Force!  Image

Surely, I can make it to and from the kitchen while holding a full tea cup and a saucer?  But no, I cannot always do that.  I am learning how to live with Sjogren’s, because it isn’t going to learn to adjust to my previous lifestyle.  Opening doors with doorknobs, a no-go.  Running from one end of the neighborhood to the other (which I had finally accomplished during the weight-loss period of my journey) a no-go.  Zumba for one hour a day, four days a week… a no-go.  Simply washing all the parts of my body with only my right hand … nope, not any more…

That brings me to my last point for today’s first blog … I have never told a soul … I have anxiety … high stress (which is now accompanied by high blood pressure — just add a few more pills to my ever-tightening pill box!) … and I’ve been prescribed an anti-anxiety pill… True confessions? Yes, because I can hardly believe I’ve typed these words … I am not the one to be sick! (Today was the first day I spoke it out loud: “I am sick.”)  A mental disorder like anxiety?  I have always been high energy, high accomplishing, high fun, highly motivated, high achieving me.  Last semester, I actually had to take time off of my job (gasp!!!) to sit down and relax at home… This makes no sense to me.  I cannot compute.  Leave work early?  I’m that employee who always has an abundance of sick leave hours to donate to whomever is ill and out of hours … I’m the person who rarely takes vacation days (how can anyone ever afford to do that when there’s so much to be done at work?!)  There’s always another essay to grade, another assignment to create, another video to review, another blog to write…But my body was telling me another story: Blood Pressure 180/130 … Time to stop.  Time to slow down.  Time to accept.

This blog is about that journey to stop, slow down, and accept.  I’m a new grandmother, and I want to be healthy for that beautiful baby boy…

I want to document my struggle, because it’s in the documenting, that I come to terms with my own pain and disappointment, my fears for the future, and my successes as I master the challenges headed my way.

I don’t know if anyone’s reading along, but if so, I hope you will join me, and I hope you will find comfort and understanding in my journey.  I would be so happy if you shared your stories as well, and I wish us happiness and acceptance, but above all, health!

Yours in peace and understanding,

Kimbo

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