FIGHT FOR A CURE Featured Warrior: Kim Wonacott Hartley by Cristina Marie
Kim is a 41 year old Trigeminal Neuralgia patient from the state of Ohio.
She is a divorced mother of several children including: her three sons that she gave birth to. They are now ages 22,17 and 15. Her two youngest sons have Autism, ADHD and one has a mood disorder. Kimberly also has 5 step children from a previous 10 year relationship and is still very close to two of her stepdaughters. One of them has blessed her with two amazing grandchildren. She also has a 20 year old foster daughter. Kim is a part time Home Health Care Aide.
Kim describes her pain as 24/7. Her face feels like she is holding a 9 volt battery to her tongue. "That feeling never goes away. It is constant", she says.The shocks she gets shoot up and down her face. 90% of the day. Her lips, nose, tongue and teeth feel swollen. "No matter how many times I look in the mirror they appear to look normal", she stated. Kim also gets the ice pick sensations in both of her ears. Many times her ears feel like there is hot lava pouring out of them. Kim explains that she feels the razor blade symptoms cutting into her gums which at times makes it difficult for her to eat. "My nose constantly feels like I have to blow it. I occasionally feel like someone is taking sharp daggers and digging them into the back of my head or down my face. I have lost some of my eyesight and at times get the dagger feeling behind and through them." She continues to describe her pain: "Most days it feels like I have a metal Helmet sitting on my head. I also get the bugs sensation of ants crawling on my face. I want to scratch but if I do I know that it will trigger other pain; making the attack worse. I have the feeling of a vice gripping my face and is being cranked tighter and tighter. I think the worse experienced symptom is the feeling that a blow torch is being held to my face. During really bad attacks it endues vomiting and severe shaking." Kim says that her children know that their secrets are safe with her because nobody could possibly torture her for answers more than she has been tortured by her symptoms of TN.
Kim has yet to receive any form of remission from Trigeminal Neuralgia. She has had continuous pain since day one almost two years ago. She was very fortunate to receive her diagnosis of Trigeminal Neuralgia from her family doctor. She also has seen two Neuro doctors. At this time, no theory or explanation have been given as to what may have caused her diagnosis. She is in the category of patients that may never know what caused TN. It is suspected that Kim may also have Occipital Neuralgia as well as Geniculate Neuralgia. She is hoping that she will find out a more definitive diagnosis when she goes to the Cleveland Clinic next month. Kim also admits that she has suffered with anxiety and depression since the very young age of 9. She has since been diagnosed with PTSD (Post-Traumatic stress disorder). Prior to having Trigeminal Neuralgia, Kim had suffered from severe back issues. A few years ago she had an Anterior Cervical Decompression and Fusion surgery on her back. It was shortly after this procedure that Kim started to experience the symptoms of TN.
She is not currently taking any medications. The brain fog has been too extreme and the medications were not very successful in reducing her pain levels. She has previously been on a high dose of Gabapentin but the pain remained. Amitriptyline helped her but made it too difficult to get up for work in the mornings causing her to consistently be late for work. "I swear Trileptal helped with my migraines but actually enhanced my TN symptoms." She has also tried Topiramate, Cymbalta and Cloridine with negative side effects.
Kim has had two nerve blocks. One on each side of her face in an attempt to ease up or alleviate her pain symptoms. She said the only difference she noticed was that the nerve blocks reduced the ice pick feeling in her ears for about two weeks. She has also tried Botox but the benefits from this treatment were also short lived as well and stole her smile for weeks!
When I asked Kim how her personal life has been affected she explained, "I don't know if there are enough words to answer that question! I certainly do not get to do all of the things with my kids that I would like. I am unable to work full time. I do try my best to make up for it on my low pain days. I don't get to travel as much as I used to. I, as well as other TN Warriors have lost some dear friends due to our illness and the things we have to endure because of it; not a day goes by that I do not think of them."
Kim is an administrator for the group, "I Give Permission to Use My Photo for TN Awareness. This is an online group that uses TN patient photos to make mems, posters, flyers, etc. in an attempt to raise more awareness and show the many faces of Trigeminal Neuralgia. Russ Baird, a fellow TN Warrior said when questioned, "Kim is someone I've never heard complaining, no matter how much pain she is in. She is one of our biggest awareness promoters that I know." Kim started writing a book last year that she is hopeful will be published sometime next year. "I mainly work on the book at night which is usually when my pain attacks are at their worst. It is a good distraction from the pain; although I have noticed my eyes are now also being affected. I am now getting eye and lip twitches when my pain levels are high. I have a tendency to shake uncontrollably as well."
Her children and boyfriend, Brian, whom she refers to as her soul mate are very supportive. She says, "The TN family is my major support system. I could not make it through this hell on earth without them!" I asked a fellow TN warrior, Rebecca D Thorpe, "When you hear the name Kim Wonacott Hartley what is the first thing that you think of?" Rebecca replied, "I hope you don't expect a simple answer to this question. Kim has the kindest heart of any person that I have ever met. She is true to the core. When it comes to Kim, who you see is who you get. She does not hide behind anyone or anything. Kim faces everything head on with great willpower and determination. She will give all she has to help anyone in need. If I ever won the lottery she is one of the first people that I would give money to because I know full well that she would give it away too!"
Kim says that if someone were to ask how they could help her she would tell them what she always does, "Give me the winning lottery ticket!" In all seriousness though, she says the best help anyone can give is to assist her in helping to spread awareness. "I do not want sympathy," she says, "I want and need your help in raising awareness for Trigeminal Neuralgia so we can find a cure! No one else should have to suffer from this debilitating pain." Kim has been to Cleveland Clinic twice for Trigeminal Neuralgia Awareness Day, which is held on October 7th, to watch the Terminal Tower light up teal as a show of support for TN patients and their Fight For A Cure. "Last year I was fortunate enough to attend and participate in The annual Race To Save Face. This event will be held again this year on July 8th in Dover, Ohio. Kim has also traveled to other states just to meet other Trigeminal Neuralgia Warriors.
I recently met Kim and her boyfriend at The Facial Pain Conference that was hosted in Pittsburgh, Pennsylvania on April 23rd. My meeting Kim was nothing less than what I had expected since befriending her almost 2 years ago online. I myself was in the hospital for a lengthy stay with Bacterial Pneumonia that also triggered my Facial Pain. It was an honor and a privilege to finally meet the woman who has not only inspired me but receives credit and my gratitude for getting me involved with support groups and connecting me with other TN patients.
Kim is well known in the TN Community for two major things: her BBG (Big Boobie Grab) statement has caught like wildfire! She uses this statement in place of hugs for two reasons: one, it makes people laugh and smile; secondly, many people can not be physically touched at all during attacks for various reasons. The other thing Kim is known for probably not just in the TN family but by others as well is that she runs a Cat Rescue center out of her home. She currently has 34 fur babies. A vet comes to the house and she also has three emergency Vet centers that she takes the cats to when they are in need of emergency care. Kim primarily takes care of the cats herself but does receive help when she needs to be out of town from family, friends and volunteers. She recently was informed that her Vet who comes to the house will be retiring due to chronic pain himself. She is heartbroken as they are very close when it comes to her mission of rescuing these cats. Most of the cats that Kim takes in are disabled. Some have daily physical therapy. Some have severe nerve damage or chronic colds from living in hoarders homes. She does have some that are adoptable. Kim has adopted out over 450 cats to date as well as a few dogs. The cats that Kim takes in are usually feral or dying in the streets. She has helped a few surrendered cats but mostly takes in the ones that would otherwise be euthanized.
Her favorite saying is, "I have Trigeminal Neuralgia. It does not have me." It is her favorite because it reminds her to not let TN rule her life. "It is what I have not who I am." she says, "I refuse to allow it to rule my life. My kids need me as much as I need them. I would like for them to see a positive mother who never stops fighting. Tears and stress make me cry more and that triggers more flareups and I am sure you can agree that we deal with enough flare ups! We need to pay attention to what triggers our attacks so we can be more vigilant in our attempt to be prepared for it."
Kim's advice for newly diagnosed patients is to not believe everything you read or hear out there! "Make sure that your doctors hear you and that they are fighting for you; not against you. Please do not just jump into surgical options with just any doctor. Do your research. Talk to others. Get involved in the support groups and educate yourself. Do not ever stop fighting!"
I asked Kim, "what if anything has she gained from this journey". She replied, "I have gained some amazing friends. I certainly have learned how strong I really am. Through watching me suffer, my son who is Autistic has gained empathy which is something I never thought I would see or experience." Kim hopes to see more answers in the near future for all Neuralgia patients. Helpful treatments that don't make patients feel worse or suffer adverse side effects. Most of all she echoes our message as a TN community to find a cure!
Thank you Kim for sharing your story with us as we continue to Fight For a Cure! If you would like to learn more about Trigeminal Neuralgia, other facial pain disorders or how you can help, please contact The Facial Research Foundation on Facebook or at www.facingfacialpain.org
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