Same Journey, New Direction by Jean Marie Keenan-Johnston

Yet again I’ve found myself blogging less often than I like.  I’d be proud of myself one Sunday that I was able to post, and then two or more weeks later, I’d find myself kicking myself because I missed another chance to write.  Some weeks it would hit me incredibly hard…blogging is true therapy for me.  I love how good it feels to share my thoughts, especially those golden moments when others tell me something I wrote helped them with their own worries or difficulties!  So when I’m unable to manage blogging for ANY length of time, a part of me feels even more lost than life’s circumstances can possibly make me feel.

Lately I’ve been feeling SO stressed and so sick that sadly those feelings of missing blogging don’t always come.  My mother was hospitalized in August, and that time in the hospital as well as after she was discharged created a lot of extra work for me.  I don’t drive distances very well and my disability makes my own household responsibilities challenging some days and impossible many others.  But I’m the only child who doesn’t work and she was alone…she needed me.  So when I was able to get the girls and me out, I drove the half hour to her house did my best to give her whatever assistance I could.  Being with her would often lead to a day or more of recovery, and I wasn’t getting any of my own chores done.  The more that was put on my plate, the more impossible it all felt.  Yet Life seemed to keep adding more on…dance classes started up again, Hubby returned to teaching his students, and Autumn was drawing closer and closer.  As my mother’s recovery continued, I was relieved, both for her well-being and my own.  But as that challenge lessened, Life wasn’t taking much else away.  And so as my pain and fatigue grew stronger and stronger, and as I slept less and less, I was certain it was just my ineffective attempts at handling the stresses of life.

Until my most recent appointment with my rheumatologist.  That’s the day when my life took a new unexpected direction…

It’s strange how life can give you just what you need at the moment you need it even after feeling for so long like you weren’t getting any of the help or answers you’ve been seeking for so long, feeling like you’ve been forgotten and abandoned.  I wasn’t due to see my doctor until December, but after feeling so lousy this summer, I decided seven years with fibromyalgia didn’t mean I should just wait this out and see what happens.  It just so happened I had paperwork I required of her that was due the following month, so I felt rather urgent about getting an appointment.  Within only a matter of a few minutes, I was pushed into a place of greater stress and panic when the receptionist told me my doctor was going out for surgery in only a matter of days, she had no chance of completing my paperwork, and I’d have to wait until my December appointment to be seen. Abandoned by the universe AGAIN.  Why couldn’t I catch a break?  Why did paperwork and an appointment have to become something so difficult to attain?  Mind you, I’m not this dejected pessimist I’m painting for you all of the time.  I actually work really hard to be quite the opposite as much as possible.  I’m in my third year of remission from breast cancer and I do everything within my power to live life grateful for that second chance I’ve been given. But I’m human.  I have ups and downs just like everyone else, especially when I’m still exhausted from family emergencies and fibro flares.  When I’m feeling my lowest of low, I try think through to see what I can do in that moment to help myself feel better.  

So I did just that…I made whatever pleas I could to the office manager, packed my children into my car and drove us to the mall next door to let the children wander around the Disney store while I regrouped within my thoughts and tried to figure out how to work around the new hand I was just dealt.  We couldn’t have been there more than ten minutes when my cell rang.  “Can you come in tomorrow?”  Are you kidding me?  YES!  And that’s when it started…the universe stepped back up to the plate and put me in the place the next day where I needed to be.  The rest of my story lies with what my own body contributed.  

I’ve complained of joint pain and swelling for years.  It’s one of the more disabling symptoms that began after I delivered my oldest child, and it’s been frightening when it continues to worsen as years pass.  I’ve seen what arthritis can do, the debilitating pain it causes and how it can disfigure hands.  But every time I mentioned it to my doctors, I would be told the inflammation just wasn’t there.  They didn’t doubt me.  It was just chalked up to fibromyalgia like all my other symptoms.  Even after I was diagnosed with fibromyalgia, I never gave up looking for other possible causes to my symptoms that could be treated better than I was faring treating fibro.  I wasn’t willing to accept that THAT was all I had in store for me…a history of failed medication attempts and inadequate treatment of the symptoms that were taking more and more of my life away from me.  But repeated yearly bloodwork was about as productive as having the doctor exam the joints in my hands and feet..nothing tangible showed up that would offer any ideas.  This time was different.  It was as if the stars were all aligned.  At first it didn’t feel that way…we talked for quite some time about all the same symptoms, all the same daily difficulties, the only differences being what’s gotten worse – needing a cane at times, the near misses with falling, having a much harder time waking up the mornings after I’ve been able to sleep and the additional nights when sleep eludes me.  

Swelling, redness and warmth -three words that have taken over my future as far as my health is concerned.  Upon seeing two swollen hands and feeling a warm elbow, my doctor looked me in the eye and said the words that deep down I knew I would one day here…”We’ve found something, and we now need to go in a new direction.” A new diagnosis – rheumatoid arthritis.  For the first time since my joint pain began, my joints were swollen enough to be a visible clue for the doctor.  But more importantly, they were warm to the touch, a sign of inflammation that never timed correctly with my appointments.  Apparently I am one of the lucky ones who has rheumatoid arthritis that does NOT show up on bloodwork.  Some would think I was a bit crazy linking any positive feelings with this kind of news, but my doctor knows me so well she said it before me…here was my validation I sought for over seven years!  Anyone with fibromyalgia knows how tough invisible diseases are, but we have it even tougher because there are still so many doubters, including physicians, who don’t believe it exists.  There are others who say it’s all in our heads, a result of psychological problems.  Testing is lacking, so it’s difficult to substantiate disability for insurance companies and employers, making it an even tougher blow.  In those few seconds, in only a few words, a small amount of that heartache was taken away from me…even if my bloodwork continued to fail me, I had positive signs of what was going on  that couldn’t be argued.  And maybe now we could be more successful with treatment!  Maybe now I could get some of my life back!

It took a bit of time for that elation to fade a bit and for the fear of a changed future to set in.  Rheumatoid arthritis brings with it a whole new set of concerns that don’t come with fibromyalgia.  Treatment is slow to make improvements, and I now have a whole new condition to research so I can be well enough educated to label important changes that could signal a cancer recurrence.  I’m scared about losing even more use of my hands, and of course the thought of more pain is something I’m trying to ignore.  I don’t give up independence easily, but I wouldn’t be honest with myself or others if I didn’t admit to all the thoughts about what I need help with to deal with my responsibilities better and exactly how we’re supposed to line all that up.  As a mom, my thoughts usually shoot right to my children – how is this going to limit their lives even more than it already does?  But for now, all of that can wait.  Right now I have my eyes set on what important for the short term – the coming weeks trying to get us ready for another possibly difficult winter with a chronic pain condition, changing the clothes with the change of seasons, trying to finally learn how to meal plan when you can’t plan your week very well already, and trying to have as much fun as possible with my awesome girls before we can’t get out as much.  I may be moving in a new direction when it comes to my health, but the journey that parallels managing my health is managing motherhood.  And that road is surrounded by light and love, smiles and giggles, and hopefully many happy, fun times in the weeks ahead!