Editor’s Note: Karla Gudgeon is a young woman on a mission….a mission to bring normalcy to the chaotic world of pain atypical trigeminal neuralgia has thrust her into, not just to survive the disabling pain, but to thrive despite it, and while thriving, to use her exceedingly artistic soul and talents toward raising funds for finding a cure for the disease that tests her daily. Her gorgeously crafted greeting cards are now available in Great Britain and will soon be coming to a web site near you…and the proceeds of her sales to The Facial Pain Research Foundation’s research projects for a cure of trigeminal neuralgia and other facial pain neuropathic disorders. Karla is remarkable and we find ourselves extremely lucky to have made her acquaintance. Read what makes this extraordinary woman tick. Learn how she’s…
MAKING THE BEST OF IT
By Karla Gudgeon….in her own words
My name is Karla Gudgeon, though my friends call me Athena. I am 22 and have had atypical and typical trigeminal (TN) neuralgia for nearly five years now. I also have recently been diagnosed with muscular pain on the left hand side (due to eating and using my jaw lopsided for so long) and allodynia, or hypersensitivity. The latter means that even a tear or a brush of wind on the affected area can trigger immense pain. I am a student at Lancaster University in England - this means the world to me as - for the first two years after I gained the TN I couldn't do much and had to defer my university place. Many of my hobbies were very active - archery, sword fighting and dancing, to name a few, which obviously became more painful and less feasible to do when the pain level was high.
After six months of moping around I discovered something I could do - card making. This hobby really took my mind off the pain and allowed me to do something worthwhile. I work for another charity called the World Owl Trust in Cumbria, England as a volunteer and I started selling the cards to raise money for them. This quickly escalated into a bit of a cottage industry making not just cards but notelets, bookmarks, magnets, coasters, pens and lots of other merchandise. Over time this has raised thousands of pounds for the charity and made me feel that I wasn't letting trigeminal neuralgia ruin my life - in other words I could still do something worthwhile.
I used to do regular craft fairs where I would have a stall selling all my merchandise and raising awareness. The vintage themed fairs were especially fun! After two years I managed to get back to university and have thoroughly enjoyed it, although I must admit the pain has made things extremely difficult. My friends have been wonderful though, recording lectures I could not attend and helping me get around campus in my wheelchair when needed (I also have the medical condition Ehlers Danlos Type 3, or hypermobility syndrome.) They have been remarkably adaptable at coping when the pain level is so high it sends me unconscious -- a distinctly irritating and debilitating survival mechanism which has caused a fair few separate injuries, not to mention the loss of my driving license.
My TN is unusual in that it seemed to be caused by trauma, not the usual blood vessel being too near the nerve. When I was 18 I had an operation called a lower jaw osteotomy, which aimed to bring my lower jaw forward so my teeth could meet up and I could bite properly (I really struggled to eat before.) I was assured that no-one had ever regretted the operation and there was a one in a million chance of other side effects besides numbness to the lips.
Unfortunately I turned out to be that one in a million - well someone has to be I guess. Either way, possibly due to the Ehlers Danlos, the left hand side of my jaw failed to heal properly and to this day bleeds and bruises sporadically, which, as you can guess, annoys the neuralgia no end. My neuralgia centers quite low down on my face, in the centre of my cheek and radiates out in a sort of star shaped pattern when the lightning bolt pains come. I'm sure many of you know exactly what I mean! The atypical pain is constant, 24/7, and usually takes the form of a very sharp ache.
When I discovered the charity The Facial Pain Research Foundation (FPRF) I decided to combine my hobby and my problems. I will be making cards and other merchandise for the Foundation to sell and raise funds that will hopefully help us conquer this terrible condition. Another TN sufferer, Jordan Riggs has kindly allowed me to use some of her beautiful photographs for new designs and I have managed to receive permission from an excellent storm photographer to make lightning themed merchandise (very appropriate I'm sure you will agree!) I hope to sell some of these products online by the end of the summer via ebay and/or etsy - look out for them - all profits will go to the FPRF.
On another positive note, against all odds, I have now finished my degree! I am now going to have a year off to recover as the degree has left me pretty exhausted. I also may have to have some sort of operation to control the TN pain. I am currently undergoing physio to help the muscular aspect and the allodynia. It’s painful in the short term but will hopefully help in the long run. Then I will see what I am left with! I am also very much looking forward to my graduation (and all the parties that go with it) in the nearer future!
Good luck all of you and best wishes always.