Thursday, January 31, 2013


I'm having an 'ow' moment. And if my friends in my online autoimmune support group offer indication, they are all having 'ow' moments, too.

Those of us with LupusFibromyalgiaRheumatoid Arthritis, or any of the other hundreds of diseases and disorders that cause one's body to attack itself, we are all in this boat together. Living with these painful reminders of ourselves becomes rote. Most of us don't even feel the pain any longer unless we are reminded by a bump of the elbow, a twist of the wrist, or a simple kneel.

But then there are the days or weeks or months where the pain just doesn't seem to let up. Colder weather certainly affects us plus stress and overdoing anything. It's really hard to be a Type A personality with an autoimmune disorder!

My friends in the online group each have their own story, some that break my heart. Yet we all come together to support one another and offer guidance, advice, or simple and virtual {{gentle hugs}} to feel community - that knowledge that we are not alone in our pain.

As I plan a trip South where I will drive 12 hours over two days, I start to panic a bit. I put together my kit of essentials - car seat pillow, neck support pillow for sleeping, heating pad, BenGay or BioFreeze, special foods for my gastroparesis, ibuprofen and, of course, all my prescribed medications to last the up to two weeks I will be away. I also visited my local library to get two long books on CD. Listening to a book while driving keeps my anxiety level down and makes the trip more tolerable and even enjoyable. I do like my alone time.

I stay at the same hotel every time I make the trip so the management staff know me. I bring my dog, Shadow, and he provides comfort (and lap warmth in the car sometimes) but also forces me to walk which is a tremendous help to 'oil' my joints and something I haven't been able to do in the frigid cold in New York of late. Like the Tin Man in the Wizard of Oz, I see myself crying out: "Oil can. Oil can."

And then it's 'ahhhhhhh.' I've reached my destination - a condo near Myrtle Beach, South Carolina. Shadow practically leaps out of the car when I roll down the window to smell that we are there, in my wonderful world of warmth and exercise and oceanic beauty. This trip I am hoping to finally meet Dr. Dalal Akoury, the holistic practitioner who cared so tenderly for my dear friend and colleague, Susan Murphy Milano when she battled Stage IV cancer last year and whose book Holding My Hand Through Hell is a must read for anyone who went through childhood trauma of any kind. Susan's experience is all the proof I need that childhood maltreatment can lead to adult physical illness, a thesis my own memoir supports.

On this trip, I go alone and know that I have many friends there who can come to my aid, if needed. That, in  itself, is a great comfort. Laughing and joking with them when we go out for fun is great medicine, too. I just ask them not to hug me too hard when I arrive. When I depart, they can hug me as hard as they want because I suddenly feel 'cured,' free of most of the pain that I've banished while down South. The drive home is easier, too.

It's no accident that my husband and I purchased a condo within walking distance to a hospital. I've taken myself there at least once to get a bolus of steroids or pain medication. In years to come, they'll all get to know me, too, just like the ER staff at my local community hospital in New York. I've learned to manage myself and my disease and my pain.

For those of us with chronic illness, a trip like this is huge. My similarly-afflicted friends will understand and, perhaps, those who read this will understand that most pain is invisible - that we don't mean to isolate ourselves, be cranky, or cry. Sometimes it's just the pain - that damn pain. Bon voyage!

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