Saturday, October 29, 2011

"Ain't no place for sissies"...

I know I've mentioned this before, but one of my mother's favorite adages was a quote from Bette Davis {of all people}: Old age ain't no place for sissies.

Old age or not, living with chronic illness "ain't no place for sissies".  My mother knew that, very well. She lived with RA for decades longer than I have. What I need to remember is that the course auto-immune diseases take is as unique and individual as those of us who are afflicted.

I wish mother were still alive so I could tell her how I now understand why she grimaced if one of the children accidentally hit her hand and when we lifted her in and out of her wheelchair. She seldom complained, but I remember a season when dad had to dress her, and how much she loved the lounge chair he bought her years later - the one with vibrations and heat controls where I knew I could find her every morning.

Negligent to maintain this RA journal, many of the details between my last post and this one have escaped me. That's not necessarily a bad thing. I don't like to dwell on the details. Acknowledge them and then move on is what I think.

So where am I today? Better than I was in July, not as good as a year ago. For now, I seem to be on a "one step forward and two steps back" track. Today is typical. I've been up since 4 am with excruciating pain in both wrists. A situation now complicated by a return of elevated liver enzymes that limits me to only one prescription pain medication, even though XS Tylenol or aspirin works just as well, if not better. 

I'm still on leflunonomide (Avara) for now, but I don't think it's effective. As I continue to wean off prednisone (I'm currently alternating 5mg and 7.5mg daily), my cough, facial rash, extreme fatigue and severe joint pains are returning. 

I had a large infected cyst on my neck left open to drain for a week before having it removed entirely. The surgeon was concerned about my ability to heal while on prednisone, but she was pleased with how well I not only healed, but avoided infection. So was I.

I'm scheduled for a repeat C-T scan of my lungs, pulmonary function tests, and a sonogram of my thyroid in early December, as well as regularly scheduled blood work, followed by an appointment with the pulmonologist and then my rheumatologist to see where we go from here. I might try to see my primary physician in November just to keep a closer eye on my liver enzymes. I'm not convinced that tylenol is the culprit.

After the first of the year and we evaluate where I am with the RA, I hope to see the orthopedic surgeon. I need to know if the biggest problem with my knees is RA or OA. If it's OA, then I'll probably need surgery if I'm otherwise strong enough. 

If you are one of the handful of friends who follow my RA journey, please know that I don't dwell on any of this. Life's too short to be self-absorbed. There's too much loving and living to do. Let's just link our hearts and arms as we journey together toward home. 

No comments:

Post a Comment