My Pain Has Purpose

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Years ago I decided my pain must have a purpose. And, I’ve made it my mission to use it to the benefit of others rather than allowing it to use me up. Two days ago, a writer at Bustle solicited stories about chronic pain. I opted to share mine. This article, published online today is the result:

Bustle article

#chronicpain #chronicillness #igg4 #invisibleillness #spoonies

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Live Today, Rest Tomorrow

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Remission doesn’t stop the pain from the prior damage from my autoimmune disease from occasionally threatening my Independence. Saturday, I could barely move. Swelling in the vertebrae in the top of my spine near the end of my neck made it difficult to move, threatening my planned birthday trip with my “stepson.” Every movement sent an electrical shock through my spine and across my shoulders. My limbs tingled and my head was throbbed. But, I refused to let my condition stop me. I swallowed pain meds every four hours, iced, took a nap and I rose for our drive to Pennsylvania nearly three hours off schedule. But, I was present.

I couldn’t do any of the rides at Kalahari the first day. However, I could float in an inner tube beside my family. Then, I watched from a chair as they climbed stairs to go on ride after ride. I was embarrassed and depressed that I was sidelined. So, just before we decided to head to our room for the night I dragged my badly battered body up five flights of stairs to a raft ride. The whole way I wished there was an elevator or some other way for a disabled person like me to get to the top of the stairs but I made it. We laughed, we screamed and we made a new memory; that was worth the pain that kept me up until nearly five in the morning.

It will take me days to recover from just walking, climbing, swimming and doing basic things with my loved ones. I am frail. But, I am also fierce and unflinching. I determined not to fail myself or my family. And, my faith tells me I won’t. So, tomorrow I rest and today I live.

#chronicpain #noexcuses #spoonie #chronicillness #invisibleillness #autoimmunedisease #backpain #disability #kahlahari #poconos

No Day But Today

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Author Napolean Hill says “A goal is a dream with a deadline.” I believe that’s true. Instead of saying someday I will, I’ve decided to set goals to reach for the next 90 days. Why? The alternative would allow my fear of relapse to keep me from moving my life forward. And, it would enable the fact that I have an autoimmune disease (igg4-rd)to limit my future. No way!

1. Set a publication date for my book, Chronic (formerly named Healed) in March (Autoimmune awareness month). I’ve submitted to publishers and gotten notes that ‘memoirs by people who aren’t famous don’t sell. Even one copy is a victory to me. I will release it so that all people who live with an autoimmune disease, relapsing disease or chronic illness/pain will know that it is possible cope with a medical ailment that cannot be cured.
2. Register for a course to complete another degree I started a long time ago (pave the way for a new career as a teacher/professor or whatever I chose). I’m certain not to old to learn. I read and share newly acquired knowledge every day at my present job.
3. Plan a trip that’s more tha a week long with my family (time is precious and want to spend it with those I love.)
4. Begin the adoption application process (I’ve always wanted to be a mom and this maybe the only way for me to do so)
5. I’ll stand on my own two feet and take a long walk without the assistance of a cane for the first time in two years. January 15th is the end of my chosen 90 day period. All of my restorative procedure will be complete.

When I finished my list the lyrics to one of my favorite songs from the musical, “Rent,” popped into my head:

“There’s only now, there’s only here
Give in to love or live in fear
No other path, No other way
No day but today”


There is no way I can justify not accomplishing my goals. I prayed for this respite for decades. I had procedures, saw doctors, and took pills to get to this point. I fought for the chance to succeed, to thrive, to live my dreams. And, I will. No Excuses.


#spoonies #disability #invisibleillness #autoimmunedisease #igg4 #aarda #chronicillness #chronicpain #noexcuses #rent #NapoleanHill #stephenhawking

No Nonsense. No Excuses. No Limits

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“What do I want to do now?” I asked myself as I clutched my doctors letter saying I’m presently not showing any acute or severe symptoms. I’m not cured of my autoimmune disease, igg4-rd, but the lack of new organ or lymph node inflammation or new aches or pains means I am in good health for me.

I don’t know what to do; that’s all I kept thinking as the days passed. Then, an old college friend reached out to me and suggested I make a to do list for the next three weeks, three months and three years.

It took me nearly a week to finish my first to do list.

1. Start to repair the damage done by my conditions: get knee and hip injections, finish radiofrequency and nerve blocks for lumbar and cervical regions of the spine. (Give myself the ability to walk without pain or numbness.)
2. Apply for Princeton journalism fellowship (see of teaching is my next career move)
3. Go on vacation with my mini family (take my “stepson” to Kalahari for his bday and have great quality time with my fiancé)
4. Finish editing my new memoir about coping with chronic illness (share what I’ve learned about how faith, gratitude, testimony, music, prayer, love and mantras can heal the soul and make illness livable)
5. Address adverse work conditions (try to work out arrangement at work to reduce my stress and anxiety to reduce my risk of relapse and improve my mental health)

I took action on my list right away. I drafted an email to my boss, booked a mini getaway, hired an independent editor for my book, and scheduled my procedures at the Hospital For Special Surgery.

As I left for the first procedure, I stared in the bathroom mirror at work and repeated, “No Nonsense, No Excuses. No nonsense will deter me from making it through my list or anything else. There are no excuses for not exhibiting the strength and potential others see in me.”

#spoonie #disability #invisibleillness #autoimmunedisease #igg4 #chronicillness #chronicpain #noexcuses #nononsense