Finding my Joy with CRPS

I am looking for joy despite the pain and limitations of CRPS. I love being a brand strategist in my own business, Integrated Marketing Strategies, alongside my mum. I find sanity through God and with my horse, MoongloTexas, my beautiful GSD Teddy and my friends. I volunteer with Proverbs 31 Ministries Online Bible Studies where I am a Small Group Leader and Quality Service Team Leader.

My baby Texas (and namesake of this blog), an American Quarter Horse, born in 2005 brings me more joy and happiness than I thought was possible. He was an unintended purchase, one of those moments I look back on and am grateful I followed my heart. I went looking for a 6 year old fully trained horse and bought a 6 month old foal instead. Texas is my life lesson, he lives in the moment. Tomorrow’s worries belong to tomorrow and yesterday is in the past. He gives his love freely and unconditionally and is happy just to be around me. I aim to be that serene, playful and joyful. He gives me my reason to fight, to live, to get out of bed. He gives me my hope. The other three precious souls who make my world all the better for them are Aurelius, Texas’ half brother and the darlingest and cutest little horse, Teddy, my German Shepherd clown and Bessie, Ted’s sister and the pup with the wiggliest bum!

It would be hugely remiss of me not to credit my sanity and happiness to my mum. Through everything, every drama or excitement, big decision and low moment, she’s believing in me and praying with me. Being raised in a Christian home meant I always believed I was close to God but in developing an illness that changed my world and my outlook, I realised God is “my rock, my refuge… My fortress”. It is to Him I run in the darkest moments and Him I thank in my happiest ones.

I love my friends and am fortunate to have the best friends a girl could wish for, they are my family I chose for myself. I love music and play piano (well) and guitar (poorly). I love art and design. I love reading and am constantly searching for new reads. I love movies and concerts and when I get the chance, plays. I am obsessed with good coffee, beautiful clothes, gorgeous shoes and fun jewellery.

Born 1987, I have lived in a number of cities in South Africa before settling in Pietermaritzburg (PMB) in 1995 with my family. I was schooled at The Wykeham Collegiate and completed a BBA degree in Marketing and Psychology through UNISA. I had the privilege to grow up in an entrepreneurial home where my mum ran her own marketing consultancy, Integrated Marketing Strategies. What free time I had after school and in holidays was spent working in the business and I am now a full time consultant and co-member. Marketing has always been a passion as is psychology. The two disciplines complement each other and I regularly use my psychology principles in the workplace.

My CPRS journey:

My journey with Complex Regional Pain Syndrome started in 2008. I experienced incredible pain in my wrist and it was interfering with my ability to use my right arm. I went to the GP who asked my to see an orthopaedic surgeon who diagnosed ganglions. I was operated on to remove them only to have the pain increase post-op. I was referred to a hand specialist in Johannesburg, who after a number of tests, scans and shots of cortisone, operated on me removing 3cm of inflammation and prescribed 6 months of rest and rehab. I was on a cocktail of potent anti-inflammatories and pain killers, none of which made an iota of difference. My occupational therapist and physiotherapist worked tirelessly to regain my movement and try and relieve my pain.

2 years in I was in excruciating pain. I spent most days in bed or on the couch crying and was physically a wreck. I had managed to complete my degree by doing my exams orally as I could no longer write. I couldn’t do any of my hobbies aside from spending time with Texie, because my horse is so amazing and doesn’t need a rope or saddle to respond. I did my best to work but it was a disaster. By divine intervention, an associate referred us to a neurologist who took the time to understand my pain and booked me into hospital for two days of extensive testing. On the evening of the second night, Dr Mohomed came in. He is a specialist physician / rheumatologist and he diagnosed me with Complex Regional Pain Syndrome (CRPS) formerly known as RSDS.

“Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain

When I came into the care of Dr Y Mohomed, the relief was astonishing! Just to know what was wrong, that I wasn’t dying or crazy and someone in the medical world believed and understood me was an answer to prayer! Since 2010, I have been balancing my meds and overall health programme.

Enjoying my hobbies has become critical. I love my horse and spending time in the field with him as well as with my cat at home. Grooming both of them calms me and does great rehab on my hands. They don’t need me to speak, they just know what I’m feeling and my horse in particular adjusts his behavior to compensate for my arm and my pain. He guards the arm for me and takes responsibility for me when I’m riding ensuring I don’t fall off. Reading, movies and audible books are such great distractions and when I’m having a good day, knitting, cross stitch, piano and drawing all form part of my rehab.

Work wise, I have been limited to 4 hours a day, I regularly exceed this but over time my clients, driven predominately by my mum (and co-member / boss), have adjusted to extending my deadlines, having meetings at my house and tailoring how we work around my condition. I was so fortunate as to get a mini iPad in January 2013 and it has rocked my world. I can do SO much more work SO much easier.

Regular prayer, bible reading and soul searching have got me through the really tough times along with amazing friends and family. Having a support system that understands my needs and adjusts to my condition has been invaluable! I keep in touch with their lives through social media and instant messaging on days where talking or leaving the house is too much.

I find reading medical journals, magazines, blogs, websites and twitter feeds helps me feel active and part of a broader community. It keeps me in touch with progress is being made and not as alone with the problem. Sometimes others with the same problem phrase it differently to me, cast a new light on it or just allow me to empathise with them.

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