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The Facial Pain Research Foundation

Salutes Our Thousands of Volunteers

 

The Facial Pain Research Foundation is fortunate to have had thousands of Volunteers assist in the raising of funds for its Research Projects to cure Trigeminal Neuralgia and related neuropathic pain.  The following article written by Karla Gudgeon in the UK is a wonderful example of someone in pain “fighting” to help others to end the pain.  We truly appreciate all of the Volunteers and their efforts on behalf of the FPRF.

Michael Pasternak, FPRF Founding Trustee

 

A Holiday Message from Karla Gudgeon

Hello again from England!  Some of you have probably heard of me from past articles. My name is Karla, nicknamed Athena and I have had TN for nearly a decade, since I was 18. It's been an awful year in many ways, not least because I seem to be getting TN on my other side now as well, something I have dreaded. But do not fear - this is a positive article. The theme of this article is that you may not reach your dreams the way you intend; life may not go as planned, but sometimes things work out anyway in ways you could never have imagined.  

As some of you know I run Child of Athena Crafts, selling wooden pyrography items, cards, and official FPRF merchandise, with all the profits going to the FPRF - feel free to check out my page on Facebook and see what I do! I also collect loose change and do other fundraising activities. Well I have just calculated the fundraising totals for 2018 and I was astonished to find out that they came to at least £2000 ($2500) when everything was taken into account. £510 of this was from a sponsored challenge, the rest is from my merchandise, loose change and other activities. I also sell items down at a local Garden Centre. Some of the money paid for the materials to send a large shipment of cards and merchandise to Florida, where hopefully it will be turned into even more funds and awareness! 

Firstly then, an update on the sponsored challenge - some of you will already know that two years ago I decided to undertake ten sponsored challenges, on horseback, set by my instructor to be at a difficult but attainable level. Horse riding is a great love for me, but is very difficult for me as the pain from my TN makes me pass out unconscious about 30-50 times a day, or whenever an attack is triggered, you know like by doing exercise or being out in the cold! I also have Ehlers Danlos which makes me dislocate and sprain joints all of the time. The challenges included cantering a full circuit on both reins, turning on the forehand, and a selection of agility and control based exercises. One challenge (reversing) did have to be exchanged as I simply couldn't do it without dislocating several joints due to my Ehlers Danlos. We exchanged this for a full spiral in trot on both reins followed by a circle in trot with no stirrups, on both reins. Eventually though Amos and I completed our ten challenges - I collected the money, he would rather have 510 carrots. He's a wonderful pony though - every time I pass out he just stands patiently and won't leave until I'm back around - even if I'm still on the floor, as long as I'm conscious!

Secondly the merchandise - I have moved away from cards and more into pyrography this year, and am improving all the time, learning new techniques. I still make cards, and the merchandise as well of course, but pyrography is my main love. Please pop over to Child of Athena Crafts on Facebook to see what I make, or check out my items on Conscious Crafties website (https://www.consciouscrafties.com/crafties/child-of-athena-crafts/). More items are being listed gradually. My Mum, who had to give up work to care for me also makes dreamcatchers, a remnant from my childhood nightmares which she has recently got back doing.

Finally, and nothing illustrates my point about dreams coming true better than this. Over the year I have been asked to play Princess Belle at various charity and community events. Over the year this has evolved somewhat - although I do not get paid for this I love doing it as a way to give something back to the community and make some children (from all walks of life, of different ages, some very ill) so happy. To me that is true magic, and a truly humbling thought to know you can make such a difference to a child, just by being there and talking to them. Now to tell a story - twenty two years ago a little six year old girl visited Disney Land in Florida. I was allowed to choose one dress - I chose Belle, my favorite princess as she was so like me. She didn't fit in, wanted adventure and loved her books. Now ironically that same holiday I damaged my ankle and had to be carried around or use a wheelchair - little did we know that it was a sign of things to come. Now fast forward a few years and I dreamed of having a few years off after uni and being a princess there for real... that wasn't to be due to my health of course. Ironically though, by being ill, I've ended up accidentally falling into doing something very similar! Either way I attained a dream, just not necessarily in the way I expected. Its a lot of effort, and I have to take very high morphine to make sure I absolutely never pass out when in character but the smiles on the children's faces make all the pain and effort worth it.  

So with that in mind, TN has taken my freedom, my masters and phD, my driving license and in places my dignity. But it will not take my dreams, because even if you can't attain them the way you expect, with a little modification they can still come true! 

So thank you to Michael and all the FPRF for that most precious gift of all - hope. 

Merry Christmas and a Happy New Year

Your TN Princess, Athena. 

 

 

   
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