Tuesday, March 3, 2009

Celebrating The "Women Of HOPE" -- Journey # 1

~~Belle's Journey~~

Once an overachiever and living a crazy life with my hubby, barely slowing to enjoy all of what God had given me within seconds that life came to a screeching halt when I was injured at work. 7 + years ago, I crushed the Sural nerve in my ankle and developed CRPS symptoms within 10 days. This began my new journey in life of dealing with the many symptoms of CRPS and chronic pain.

I wasn't officially diagnosed with CRPS until 3 months after my injury and never received the correct treatments until two years after my diagnosis. Finally I was given the okay to start seeing a podiatry pain management doctor who specialized in CRPS and chronic pain. At this point in time, I could barely walk and was very close to being in a wheelchair and I had the classic signs of CRPS which included: sensitivity to anything that touched my leg/foot/ankle; pulsating and throbbing pains; sharp pains; either fire engine red to deep bluish/purple coloring from left knee to ankle/foot; freezing cold on that leg; only comfortable laying on couch with leg propped and the list goes on. My doctor started right away in trying to reduce my pain with pain procedures, physical therapy and different meds. To date I have had 9 Pulsing Radio-Frequency Nerve Lesioning procedures with conscious sedation. This doctor moved from my area and boy have I missed his excellent care, and concern for me as person first and second someone with CRPS.

Since my original diagnosis and after a few more tests I've also been diagnosed with Sural Mono-Neurology. Along with all of this and because of the aggressive rehabilitation that I have done I also have a bone-spur in my heel of the affected foot.

Today I continue with PT 3x's a week, and know that this will be a part of my life from here on. I use a TENS unit (never on the affected nerve) and I have done Mirror Therapy as well through my physical therapist recommendation. I have whole body massages minus the affected nerve area to help ease the muscle tension and tightness that I get along my entire sympathetic nerve track along my spine. My left eye is now affected with dryness and blurriness that comes and goes depending on my pain levels. I also am very much into the naturalistic way of helping to heal & promote health within my body so I also see a naturalistic doctor along with my pain management doctor.

In the past, I have also had good results from Quantum Bio-Feedback, Chiropractic treatments, Cranial-Sacral, Reiki and Bowen work and now find that I don't need those therapies anymore and find myself using the bio-feedback techniques often.

For the first 9 months of 2008 I pretty much was without a pain management doctor, long story short-- I was told by his office that I needed to be patient and wait my turn for my pain procedure that I was paying for out of pocket as I have an HMO and thus fight for all my pain care. After 3 months of "waiting patiently" I decided it was time to find another doctor as it was apparent that this office and doctor had abandoned me. So I went on the search of a new doctor and I found him. What an amazing pain management doctor he is. He cares about me as a person first and someone who deals with CRPS secondly. He specializes in CRPS and is up to date on the latest for our syndrome. He believes in Comprehensive Interventional Pain Medicine and is starting from square one for me in what procedures he is doing. I don't mind him starting from square one to get his own baseline, in fact I so appreciate this! He wants to see how much involvement I have in my sympathetic nervous system and to get it calmed down. Three months ago, I had a Lidocaine IV and Bolus and have had incredible pain reduction. As of now, I see him on an as needed basis and if I need to talk with him he is only a phone call away for me.

Since my procedure I have been able to decrease my anti-seizure medication and was started on a med that is used for Restless Leg Syndrome. He changed my pain medication for me and has also given me a muscle relaxant that is timed-release. My pain levels have dropped dramatically and can't to stay in the tolerable range.

For me, learning and sharing about CRPS/RSD will never end. I so enjoy all the little things in life and find pleasure in everything now.
To help spread the word and to support others, I started my own yahoo Christian support group at
http://health. groups.yahoo. com/group/ hope-4crpsrsd/

"I may live with CRPS, but IT hasn't taken ME!"
"I live with
HOPE and will forever more!!"

"Without Faith nothing is Possible... With it, nothing is Impossible"
Author unknown

3 comments:

Unknown said...

Thank you so much Belle for sharing your story with us ALL!!!!

You are a remarkable individual and I am glad I have had the honor of being your friend!!

Many Blessings,
Coach Marla

Coach said...

Hi Belle,
I've enjoyed chatting with you on Coach Marla's talk radio show! Your experience touched my heart and I wish you and all the Women of Hope the very, very best always.
Love, Coach A.

Handcrafted Awareness Jewelry said...

Thank you both for your kind comments, really means a lot to me. God is by my side and thus I am able to move forward in a "positive" way.

Thanks Marla for your friendship. You give a lot to many of us.

Hugz, Belle