Painfully Aware (#11 in my 30 in 30 series)

pain

I know a thing or two about Pain.  Pain and I go way back – back to when I was a freshman in High School.  I actually have difficulty remembering what life was like without having to deal with pain and discomfort on a daily basis.  I’m not complaining – just explaining.  I’ve actually learned a lot from my Pain and believe it has made me strong, even as it makes me weak at times.  When I was 13 years old I was diagnosed with Juvenile Rheumatoid Arthritis (JRA).  It was scary, painful, and frustrating.  I would go to bed in pain and wake up in pain.  I felt like a 98 year old woman, hobbling down my high school’s hallway with a cane.  My peers didn’t understand – arthritis was for old folks, they would say with a snicker.  High school is tough enough, but add excruciating pain, visits to the Rheumatologist (where I was always the youngest one in the waiting room), ever-changing pain meds, and an un-cool limp, and it’s nearly impossible.  Fortunately, I survived high school and eventually my JRA went into remission in my mid-twenties.  I learned much about depression, isolation, strength, resilience, and hope during that time.  I also learned one of the most important lessons in my life so far – the separation of mind and body. Since my pain was a daily visitor, I figured I had two options – let my unwanted guest ruin my day (and, in the long run, ruin my life) or learn to accept my guest but not let it dictate how I felt emotionally.  Sure, my physical state was out of my control, but I was the one who chose how I felt and thought about it and myself.  I was eventually able to exist in what seemed like two opposing states – I could be in extreme pain but still have a smile on my face and have a decent day.  I couldn’t let myself be in as much emotional pain as my physical pain, because it would have ruined me.  I believe this lesson has subsequently helped me get through breast cancer and is now helping me deal with Lupus.  My physical being does not rule my emotional being – although sometimes it tries very hard to.

*To learn more about Juvenile Rheumatoid Arthritis, please visit  http://www.webmd.com/rheumatoid-arthritis/understanding-juvenile-rheumatoid-arthritis-basics

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The Write Stuff : 30 in 30

Writing has done many things for me – it helped me cope with a difficult childhood illness, helped me earn my degrees, helped me put on paper the feelings I could not speak out loud, and it helped get me through cancer treatment.  It helps me now deal with Systemic Lupus and the prospect of my cancer returning.  It gives me, and hopefully those who read my musings, hope for the future and a way to make some sense out of the senseless things that happen.  There was a time when I guarded my writing like an overprotective parent, for fear that people would see the “real me” and run away in horror.  But, when I finally did take the risk of showing my work to others, they didn’t run – it actually brought us closer.  Little by little, I shared more of my writings with others and secretly dreamed of being a “Writer” with a capital W.  But, it wasn’t until I was diagnosed with and survived breast cancer that I was comfortable sharing my most personal insights with perfect strangers. I kept a notebook during and after treatment; writing about my thoughts and fears, as well as the surprisingly funny and good times, helped me deal with a terrifying situation.  So, I decided to share my writing with a larger audience, and started this blog.  My intentions were to have an outlet for my feelings/experiences and, hopefully, provide comfort, humor, and support to others.

Now, I’m taking another step on my writing journey and working towards becoming a Certified Journal Facilitator.  My long-term goal is to be able to teach others how to use writing as a means of expression and healing.  My short-term goal is to become more disciplined about my writing and incorporate it into my daily routine.  So, I’ve decided that I will challenge myself to write and post something every day for the next 30 days.  I would like to invite others reading this to suggest topics for me to write about, as well.  Let’s see if I’ve got the “write stuff” – wish me luck!

P.S.  I’m counting this post as #1 – only 29 more to go!

Feeling Good is a Full-Time Job

I’ve always had health issues. Let’s just say my immune system and I have never been on the best of terms.  At the age of 13, a swollen, painful ankle turned into a surprising diagnosis of Juvenile Rheumatoid Arthritis.  I had been an athlete up until then, with dreams of possibly getting a college scholarship in softball or maybe basketball.  That all vanished.  I struggled for years with chronic pain and depression.  All through high school and my college years, I had to find ways to deal with the pain, fatigue, and bewilderment of my peers, who thought I was joking when I told them I had arthritis. The Juvenile Rheumatoid Arthritis eventually went into remission, but I have had chronic pain ever since. When I was in my early 40’s, I finally got a diagnosis of Systemic Lupus, after having weird symptoms and worsening pain for years. Lupus is sometimes called “the cruel mystery”, because it can take years to diagnose and often people are given incorrect diagnoses along the way. I was told I had fibromyalgia, rosacea, bursitis, tendonitis, osteoarthritis, and it’s all in my head-itis. I was relieved when I finally got the correct diagnosis and was put on meds that would slow the progression of the disease and decrease the pain. When I found a lump in my breast a few years later, I thought certainly I had been through enough medically and it couldn’t possibly be cancer. Boy, was I wrong. I got through that, thanks in part to some of the lessons I learned earlier in my life about separating my emotional from my physical well-being. Now, I’m 46 years old, post-menopausal (thanks to some bad ovaries and chemotherapy), still have Lupus, and am a cancer survivor. I’m tired from the minute I wake up to the time I go to bed. Feeling good has turned into a full-time job for me. I have to make sure I’m taking my meds (whose side effects include pain and fatigue – oh, joy!), eating right, exercising, and following up with my various doctors. I make a special protein drink every morning with fresh fruit and almond milk, try to stretch each morning, and attempt to get to the gym each week to keep active and decrease the risk of cancer recurrence. I have to have labwork done every few months to monitor my meds and to make sure the Lupus isn’t progressing and the cancer isn’t back. I take supplements and have stopped buying foods that are processed or have too many ingredients I can’t pronounce. I try, I really do, to drink water throughout the day to stay hydrated and healthy. I have an actual full-time job, as well as two small children and a partner. I guess my immune system and I will never be friends, but I’m hoping, with all the work I’m doing, we can at least be on speaking terms.

Pain

Deep in the night

I lie awake

Praying for sleep to

overcome me

But I know my Pain

will not allow it

It is the Controller now

It takes over my body

It takes over my mind

Until I can’t remember

when It started

Or when I was

without

It

Progression

Pain

intense, continual

frightening, maddening, depressing, crushing

pills, needles, doctors, prayers

easier, bearable

Relief

Untitled – from 1990

*When I was 13 years old, I was diagnosed with Juvenile Rheumatoid Arthritis. I have lived with chronic pain, in one form or another, ever since. i actually think it helped prepare me to deal with my diagnosis of Breast Cancer and the emotional and physical pain that have come with it. The following poem was written in 1990, approximately 10 years after being diagnosed with JRA. I am now Cancer free and outgrew my Juvenile Rheumatoid Arthritis, but am still living with chronic pain from Lupus.

 

I used to think the Pain

Would never

Go away

It was an unwanted

Part of me

Part of my bones

Part of my soul

I used to wish

That I would die

Not to stop living

But to stop hurting

My fragile world would

Threaten to fall

Apart

Each time I heard

“You’ll just have to learn  

To live with it”

But the amazing thing is that

I have –

And now

When the pain comes

It’s still a part of me

But it doesn’t control or

Define me

My soul wants to

Live now

And my world isn’t as

Threatening

As it

Used to

Be. 

(1990)

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