Medical Crossroads

We had an indian summer, and mid-way through November thousands of leaves are still clinging to the trees.

I feel restless. Longing for something unknown.

Thanksgiving is this week, and I am striving to be grateful and to forget myself. And I am grateful. Grateful to be alive. Grateful for the progress I have made.

Like the title of my blog, I seem to be at a crossroads … again. Ambiguous and undefined.

I love my family. They are first. My children and my husband are my world.

I love my work. I am trying to figure out where it fits in.

My medical mystery …. well … My medical mystery is ongoing and burns like a fire under everything I do. And while my recent trek to Chapel Hill yielded some answers, it produced even more questions.

The Official Diagnosis

We’ve established that many of my issues are genetic and “constitutional” (meaning, they are part of me and will never go away). Now begins the adventure of living with a host of invisible disorders, where I “look fine” but often feel as though I will collapse in pain or exhaustion at any given moment.

We were right about hEDS. Ehlers-Danlos Syndrome is a collagen disorder. Basically it means that the collagen, which is like the glue that holds the body together, is damaged or missing in several systems throughout my body. I have hyper mobility type, which means my joints and connective tissues are especially affected and painful.

I also have Sjogren’s Syndrome, which often accompanies EDS. This is an autoimmune disorder where the body attacks healthy mucous membranes. It is usually characterized by dry mouth and dry eyes and extreme fatigue. Venus Williams has Sjogren’s and is a great champion for our disease and a fabulous example of someone who has been able to manage it and overcome the often crippling exhaustion that accompanies it.

There are more notes. More parts to the diagnosis: possibly POTS, Mast Cell Activation Disorder, and a few other pieces. More questions. There will be more doctors to see. More appointments and therapy. The journey has only just begun. But those are the highlights.

Mountains to Climb

We all have trials. You have them too. I know you do.

But for me, this time is different. This time I know I will never reach the top of the mountain. It will always be there. There is no cure, and it will never go away. So what do I do?

I have to take things a day at a time. Sometimes an hour or a minute. Just one moment at a time.

My wise doctor advised me to live my life in a manner that is “hopeful” and “reasonably flexible.” Good advice for everyone, I think.

I once heard someone say …

“There is a reason why the rear-view mirror is so small and the windshield is so big.”

I have to look forward, not back. Tomorrow is a new day.

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3 thoughts on “Medical Crossroads

  1. Melody,

    I wish you had something that came with a cure. I have not the cornucopia of conditions that you are carrying, but I have enough that I, too, shall never hit a mountaintop, and even though I have known this for some time, I can not make peace with it. To me, acceptance feels too much like giving up.

    I’m not recommending you follow my example. Your approach is, I think, the more beneficial one. And I continue to hope for new cures for us all.

    Ruth

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  2. Sorry for your pain! A day at a time and enjoy the few minutes, hopefully hours of relief. My daughter has Lupus and RA….it’s really hard as a parent to watch her in such pain. She meditates and sometimes gives into the pain and rests from the strain of constant fighting pain. It’s a vicious circle…..most medications have such awful side effects it’s scary to think of what their doing to the body!…..I certainly understand the not knowing how you will be feeling hour by hour or what will my body let me do today. Wishing you the very best…..hopefully you will have good days..,treasure them and remember them! Miss you and really glad you have your children and husband.

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