I Wish I Would Have Known! #HAWMC

Well here we are thirty days later and its time for a strong finish to the month long Health Activist Writer’s Month Challenge! So today I’ve been asked to write a post that answers the question “what do you wish you had known at the beginning of your patient journey that would have made it easier and less scary”? The answer is quite simply I wish I had known more about CRPS and everything that comes with it! In the following post I’ll attempt to answer that question in detail. Its been a journey filled with surprises and many challenges and had I been armed with information it may have made it easier to transition to where I am today without so much fear.

When I was first diagnosed I remember that first year as my CRPS developed and all the fear and uncertainty that surrounded my future. My CRPS started after a surgery on my left arm, long story short I started getting swelling and discoloration in my left arm. I remeber my journey towards diagnosis when all of this began like it was yesterday. The swelling wasn’t going away and I was being sent to various doctors to try and figure out what was wrong. I remember my wife calling me at work only hours before I was suppose to get on a plane for a business trip, to tell me not to fly as I could have a blood clot! As we found out later it really had nothing to do with a blood clot at all. It was the start of many days ahead filled with fear and questions that nobody could answer.

The first few years before and after diagnosis were scary because nobody could tell me what was going on with my body. Knowing who to see and how to get to them would have made the process so much easier for me. However even after diagnosis nobody really knew how to treat a person with CRPS, let alone give me any information about the disease itself and what to expect moving forward. When I had questions about CRPS it seemed as though the usual answer was ”I don’t know” or “we don’t know enough about it”. If I had been armed with the knowledge that I know now about CRPS and how to try and best treat those symptoms, then it would have taken a lot of that initial fear that I felt away.

Lets face it! Its scary when you don’t know what’s going on with your body! Add in chronic pain and desperation and it makes for a real volatile mix! I spent so much time guessing and worrying about what was wrong with me. Not to mention not knowing what it was going to mean for my future. If only my GP who I was with at the time known something more about chronic pain and CRPS! The least he should of known was who to get in touch with in order to diagnose and treat me. I’m not angry with that physician because he truly didn’t know. It was however frustrating because I had no direction from anybody or anyone to turn to in my time of need.

If it wasn’t for the support of those around me like family and friends it would have been twice as hard to get through those first few years. So in my opinion its really important in those first stages of being diagnosed that the patient has support and information about what to expect and who they can turn to!

 

About Ross

My name is Ross and I want to welcome you to my site. I'm married to an amazing woman who is my best friend, and my soul mate all rolled up into one! I am the father of two very special girls who we adopted from China & Ethiopia. Together we make up one very multicultural family! In 2006 my life was turned upside down when I was diagnosed with CRPS/RSD. It was the start of a journey I never could have expected, and one that I couldn't fight without God. CRPS is a chronic pain disease and it started in my left hand. I lost mobility of my hand and started to experience pain unlike I ever could have imagined. Not to long after my left ankle became affected. I spent the better half of about a year not knowing what was going on in my body and traveling from doctor to doctor to find a diagnosis. As time went by I started learning more about CRPS and all its symptoms that it brings with it! As I started to learn more about CRPS I felt the growing need to share the information I was learning with others and to raise more awareness. As well I want this to be a place where we can connect and support one another. So I would encourage you to contact me if you want.
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2 Responses to I Wish I Would Have Known! #HAWMC

  1. devon says:

    I can’t imagine and I really admire your positive outlook!

  2. Chris H says:

    So… has there been a lot more information put ‘out there’ now about CRPS for people, who like you, know nothing about it when they first experience symptoms? I hope so. It must have been very scary for you in the beginning.

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