Freedom of a different sort

Fourth of July will be over by the time you read this, save for a few

neighbors obsessed with fireworks. But the Fourth of July is now my

yearly reminder of a new freedom for me: freedom from pain.

Three years ago I was diagnosed with Rheumatoid Arthritis, an

extremely painful and potentially crippling blood disorder. After a

series of “sports injuries” resulting in an emergency visit to Hoag

ER and a sobbing two hours with the most pain I have experienced

since childbirth, the hospital blood work showed I had RA.

After attempting to work with one doctor who did not offer much

time, patience or sympathy, I heard about Dr. Christine Thai from a

friend.

This petite rheumatologist sat down and took her time to listen.

She offered me some hope and said “I am in your corner.” She was so

kind I started crying, and together we have fought this thing.

Some low dose chemo shots worked for awhile, and then I again

started to have random and painful flare-ups in my joints . The scary

thing about RA is you don’t know when the pain will attack or even

where. The pain is severe and you’re always on guard. Your life

starts to revolve around it and your world gets small.

Every morning I would check my ankles (always swollen and

inflamed) and my wrists (usually sore). My toes were so inflamed I

could only wear Mephisto-type sandals. I could not wear high heels to

my school’s graduation, and so appeared in a lovely dress with

Birkenstocks.

I had nights of one shoulder flaring up and then a hip, or a knee.

I’d wake in the mornings with blue ice bags scattered around the bed;

a testimony to my sleepless nights.

I did have people who understood. My friend Dave, who also suffers

from chronic pain, would listen to my fears and we’d sit in his hot

tub together and realize that everyone has something to bear in life.

I had unlimited long distance and called my two best girlfriends in

Montana and Minnesota relentlessly. They had medical issues as well,

and friendship helped us get through these things. My daughter

listened patiently from Los Angeles, would drop by and take me on

forced marches through the Castaways even when my toes hurt. She knew

exercise shored me up.

A student of mine, who named herself Dr. Pammy, had been diagnosed

with RA at age 15 months. We became a mini-support group and checked

each other’s pain levels daily.

I swam when I could do nothing else and my hair turned into green

plastic.

Dr. Thai sat me down at the two-year mark and said: “Susan, you

are not responding to the shots. You keep having flare-ups.”

“I know what you’re going to say, and I don’t want to go on the

biologicals,” I said. “I don’t even like getting my blood drawn and

it’s a two hour IV infusion.”

Dr. Thai stood up, all 4 feet 10 of her, and said: “Susan, you are

a young fifty six. You still exercise and you are very active. I have

seen patients regain their lives with this treatment.”

“No,” I said.

“I am worried about your feet and ankles getting damaged. You are

not the type to lie around and watch TV”.

I thought about those swollen ankles and toes. “How much does it

cost?”

Dr. Thai said, “It’s incredibly expensive, but your insurance will

pick up a lot of it.”

And so, bringing a blanket and pillow and Dave for support, I had

my first two-hour infusion July 1, 2004.

The next day I realized I was not limping. I called Dr. Thai. “It

must be a placebo effect,” I told her.

“No, some patients respond right away.”

“I don’t believe this. It won’t last,” I assured her.

I was moving from a second-story condo at the time, since I could

not manage the steps any more. When I picked up boxes Dave and his

son told me to watch my wrists.

“They don’t hurt any more,” I said. I moved to a one-story condo,

and by the time I was moved in I could ironically negotiate stairs

again.

Today, July 1, I celebrate one year of being pain-free. I jog,

lift weights and do a wussy attempt at kickboxing at 24 Hour Fitness.

I do it just because I can.

I try to stay in the day, knowing things don’t last forever. I

wore my first pair of heels to my last graduation and retired to

travel and see the world while I’m feeling good.

My co-payment for all this treatment is $1000 a year. I can’t even

express how grateful I am to have insurance. Each individual infusion

is several thousand dollars. Without insurance I would be watching my

joints suffer progressive deterioration and know that eventually I

would be unable to walk.

My heart goes out to those without insurance. Having worked at a

continuation school, I know that poverty and hard times happen for a

lot of reasons. Not having insurance often occurs because folks are

not willing to become indigent and prefer to work. The working poor

are the ones who often cannot get insured.

I wish for insurance for all people. No one should have to go

through an incredibly painful disease without access to treatment.

I am grateful for my own Independence Day, and freedom from pain.

* SUE CLARK is a resident of Costa Mesa and a therapist in Newport

Beach.