I BELIEVE IN YOU!
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I BELIEVE IN YOU!
https://encrypted-tbn3.gstatic.com/i...6f2Tw21rAf4u-i
http://ts3.mm.bing.net/th?id=H.49727...58774&pid=15.1Thought this would make you smile... I am so glad to hear day one went well, rest little one and don't ever forget that we are here cheering for you and sincerely care and thinking of you and wish we could be there to hold your hand. We are behind you one by one with positive thoughts, prayers, virtual hugs, vitual hands holding yours and all tucked into your big beautiful heart and cheering in the background and here to read and listen and share tears and laughter with you. Be strong little one and we are thinking of you fondly as always.......
My prayers are with you, Loocie.
I'm here for you.
Sending big Viking hugs your way.
thinking of you always loocie *hugs*
Good morning Loocie. Thought I would drop by with some flowers and wish you a wonderful day :sweet:
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My prayers continue for you, and I send you HUGE hugs! :)
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Neurofibromatosis, my goodness what a tongue twister! A disease, a disorder and something I had never heard of until 2000. I was turning 42 that year and was finally getting some answers to why I had been living with jarring, jolting, electrifying, non stop pain. I had been living with this pain as my constant companion for so long that it almost defined me. Walking was such an effort, as the pain was in my right calf and foot, but I had no choice but to keep on going.
When a MRI revealed I had a potato sized tumour in my right posterior tibial nerve, I was dumfounded. In February of 2000, I had the tumour removed at St. Michael’s Hospital in Toronto. Finally relief, and I thought that was it and my life could continue. Not so fast though. It was malignant.
I was referred to the Peripheral Nerve Clinic at Mt. Sinai Hospital where I was told the tumour would most likely grow back. The word amputation was mentioned to me for the first time. I sobbed with fear and the realization of certainty that I had no control over this. Low and a couple of beholds later, I was back to square one with this “thing”. In just two short years, I found myself facing the loss of my right leg below the knee. So, in June 2002 the surgery to amputate my leg took place. Living without a leg was a whole new world. I was very depressed, frightened and had to grapple with coming to the acceptance that this was my life now.
How dare NF-1 intrude into my life and mess it up. Soon I was fitted with prosthesis and I was on a path of independence learning to walk on my new leg. It has been nearly 12 years now and functioning with my “leg” is just part of my day to day life.
Fast forward into 2012, it was May and a whole new mess of problems. I had been having more pain in my left hip this time. My walking became painful. CT Scans, MRI’s and more doctor’s appointments then I can recall. This time, once again I was facing a very complicated surgery due to a MPNST in the area of my left iliac & pelvis. I was in for more surgery and a 9 week stay in hospital and rehab. It was a painful time for me, physically and mentally.
I spent several months in a wheelchair, then taking small steps with a walker, then bigger steps and eventually crutches. I underwent 33 radiation treatments that were completed in December 2012. I had hoped that was the end of it..... BUT……….
I am now living with the recurrence of this in both lungs – the metastasis of my MPNST…..so my story continues….
One of the reasons I am here & laying this all on the line, is because it is my sincere hope that something good comes from my experiences with this disorder. If I had have known I had NF, things could be very different for me right now. Maybe I can get people googling to learn a little bit more about NF....because.....Just imagine having a medical condition that many doctors have never heard of: one so diverse and unpredictable, that no one can tell you which symptoms you will have, and when? This is a way of life for those with neurofibromatosis. Often misdiagnosed, or not diagnosed until complications arise, people with this disease also face very limited treatment options....
Neurofibromatosis (NF) is three distinct disorders: NF-1, NF-2 and Schwannomatosis. NF causes tumours to grow on nerves throughout the body. It can lead to blindness, bone abnormalities, deafness, disfigurement, loss of limbs, learning disabilities, and excruciating, disabling pain. Sometimes, it can lead to cancer. NF-1 affects one in every 3000 people, and is more common than Cystic Fibrosis, Duchenne Muscular Dystrophy and Huntington’s disease combined.
THERE IS NO CURE.
Thank you for taking the time to read this post & thank you too for your support. It helps me in so many ways.
xxx
Sending you happy and healing thoughts Loocie. Thank you for sharing your story.
Your strength , courage and selflessness in sharing your story...so brave, so caring........
Loocie we walk with you and beside you and are here for you as you choose and need.....
giving you all we have, with all our love.
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Thank you for your post and taking us through what you have experienced Loocie. Many of us are in awe of how you have handled your journey with this disease since you were first diagnosed. Unfair does not even begin to describe the reaction I had to reading it all. Awareness and knowing what the symptoms are can most definitely help others, thanks for posting the details.
Group love for you, Loocie!
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Thinking of you every step of the way.... xoxo :love:
Dear Loocie...
Your Words may not bring a Cure, but they bring Awareness.
Awareness can be Followed by Knowledge.
Knowledge, in the Right Hands, can bring Wisdom.
I may not be "Wise", but I can Seek Knowledge.
THANK You for Taking my Hand and Leading me to the Unknown!!!! :sweet:
Together, we shall All March Forward with our Hearts Held High.
This reminded me of you Loocie. Thanks for sharing your story.
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen." -Elizabeth Kubler Ross
Loocie, thank you for sharing your story & bringing to light this awful disease. while i may not know the pain you're in, i have a better understanding of what you are going thru. i pray for you & am sending you positive vibes to help you beat "it". you are truly strong & brave.
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My thoughts and prayers are always with you my dear friend!! Big hugs sent your way :hug: Keep smiling and NEVER EVER give up because YOU WILL beat this!!! :flowers: xo
Today is much better than yesterday. I'm still sorting out getting into this groove. I went out with one of my nuttiest friends to pick up a few grocery items. We both got a case of the giggles and actually made other people laugh along with us. Laughter eases tension....who knew that a simple trip to the grocery store could be so much fun?
I will have more to tell you soon.
* just a footnote regarding Neurofibromatosis. It is very rare that we see malignancies less then 7%. I wonder how come it had to darken my doorstep? It is a very diverse disorder that effects everyone so differently. Talking about this is a huge step out of my comfort zone, but if more of us don't speak out, we will never be heard.
Thanks for tagging along.
