Ebb & Flow

There is a natural ebb and flow to this disease.

I know this intellectually and I celebrate the ebbing.

Days with no fatigue.

No autoimmune issues.

No b-symptoms.

But then WHAM, the dragon hits again.

On the good days, I nearly forget that CLL is lurking.

The recent three weeks have been difficult with all the associated issues that a disregulated autoimmune system bring:

fatigue,

gastroenteritis,

migratory dermatitis,

persistent, painful mouth sores.

Tomorrow I see Dr. Bengston at Dartmouth Hitchcock Medical Center. Copies of the excel spread sheet that I use to document autoimmune and b-symptoms was mailed a week ago along with a list of questions for discussion at our meeting. I also proposed that we look at returning to the high dose immunosuppressants used last year for AIHA. One side benefit of that treatment was a knocking back of the autoimmune sequella for about about eight months.

Like The Lillies in The Fields

I love June.

The cool mornings,

the warmth of the noon-day sun

comforting breezes

the riotous color of spring gardens. . .

Our little side garden is just popping now.

Today our very first poppy appeared, tall, blood red and beautiful

surrounded by 3 foot Asiatics that will be next to unfurl their petals.

The little garden is hardy:

it survived the unseasonal winter warmth

and late cold of May that was followed by lots of hard rain.

It survived

persevered to thrive:

first, the daffodils

grape hyacynth and tulips

now poppies and lillies.

I want to be more like the flowers in my garden.

Withstanding the unexpected

Celebrating days of strength and energy.

I want to learn to accept the days of fatigue and fever

mouth sores skin eruptions intestinal pain

when I haven't the energy to work, to play, to cook or to eat.