I am amazed by the tone in the stories of patients and survivors who have had or continue to battle serious illnesses and conditions.  I am inspired by their courage and by their determination to create a life with whatever they have been given.  They have chosen to turn these obstacles into building blocks for something good rather than to be isolated from the world by them.  Surely not an easy feat, it is the difference between languishing or thriving.

I crossed paths with Katie Passey, a young lady in her early 20′s who has had CRPS for about 10 years.  I have a pretty good idea of what this agonizing disease can do to you, as my husband got it 4 years ago.  I wondered how she handles the illness and how it has affected her life. Through the magic of Twitter, I asked her if I could include part of her blog here, and very graciously, she agreed.

In the passages below, Katie tells us why she blogs.  She also tells us, in unspoken words, that her spirit and determination to live a fruitful life are far stronger than this ravaging disease! This may sum up her outlook pretty accurately:

Pain is inevitable, but suffering is NOT!

 

Thank you, Katie, for sharing your story and your message of hope!  Please visit her blog for more stories!

CRPS and Me 

 

Why am I writing this blog?

by Katie Passey

Thursday, 1 September 2011

Re-published with permission

 

I have many reasons for writing this blog; one of them is so I can spread awareness of this painful condition. It’s very hard to know exactly how many people have CRPS in the world because it is extremely hard to diagnose and is often misdiagnosed – but it is estimated that 1 in 2000 people worldwide have a case of CRPS. I strongly believe that raising awareness for CRPS could lead to more research on the condition and inform other people about the condition. CRPS can be brought on by a minor injury which could heal and then develop many years later or could develop straight away; if more people knew about CRPS maybe it wouldn’t go undiagnosed and ignored as much as it is today.

The other reason is so I can try to come to terms with my CRPS as it is a painful experience which affects my life a lot and has no guarantee of where I will be in the future. No one exactly knows what the future holds for them but I know that mine is even more of a mystery as my pain may or may never go away – and this thought creates an endless list of worries. But I think by writing this blog I can keep myself and others optimistic, as it is a waste of time focusing on the negatives in life when you should be thinking of the things you can do and live them to the full – there is help and support everywhere for everything. My aim in life is to enjoy every second no matter what may happen. Despite my CRPS I have learnt how to play the saxophone, up to Grade 6 at the moment, and the Guitar and I have been in endless amounts of show’s including operas, musicals and straight plays, which I have played main parts too. It is the thought that I can still get through all that which makes me keep reaching out and trying as hard as I can to live life to the full. I hope I can inspire others to not give up either, as you only live once.

 

 

My Anecdote

by Katie Passey

Monday, 5 September 2011

Re-published with permission

 

In the Autumn of 2004, when I was 10 years old, I managed to over throw a real Javelin at my athletics club, SJAC. I started to feel shooting/rushing pains up my right arm that was nothing I had ever felt before; it also turned a mottled blue colour and went very, very cold. I was sent to the doctor who told me that it was fine and there was nothing to worry about – [Except], it wasn’t fine and the pain would re-occur maybe two, three times a year if I knocked it. I went back to the doctors many times but they still did not know what was wrong with me; they just sent me off to various physiotherapists – who all had their own theory of why my arm was hurting. So after 5 years of suffering alone, with the pain becoming more frequent and intense, I decided I was fed up and wanted to get something done about it!

As soon as I met my new consultant he sent me straight off to endure 2 MRI scans, 2 nerve conduction tests, an x ray, an isotope bone scan, another 3 sessions of physio and acupuncture – and after 2 years of all that they decided that all of the tests were . . . inconclusive. (These images are my actual scans) It was at this stage, nearly 2 years ago, that the only conclusion was to be sent to a specialist where I was finally diagnosed with stage 2 CRPS (Complex Regional Pain Syndrome) in my right arm. Some may be reading this and thinking it sounds awful, but to suffer for nearly 7 years without knowing the reason for the pain and to then to find out what is causing it, that I’m not alone and that I can be given help, was really a dream come true.

The moral of my story is: don’t settle for a quick assessment – pursue it till the end – Don’t leave it for 7 years, like I did, thinking it would get better on its own.
What is your story?