Jenna's Battle! Everday That There IS A Battle, I OverCome It With A Positive Attitude and My Smile!

Hi my name is Jenna and I was born with Conradi Hunermann Syndrome. It is a rare severe genetic bone disease. It is debilitating and degenerative. My bone joints wear out and the one they can replace, they will and the ones they can't, then they won't be able. This is an uncureable condition and it effects all of my bone joints. I was born with Scoliosis and my spine was fused from the top and at the bottom when I was born. I also have Torsia of the Hip. I also have Carpal Tunel Syndrome, Arthritis, a severe and uncureable bladder conditon called Interstitial Cystitis, which also cause pain. I have GERD, a Reflex Disorder. I am also prone to Skin cancer. I was diagnosed with OsteoArthritis and Fibromyalgia. I have gone through 20 going on more operations all on my joints. I have Osteoperosis and I have lost 30 percent of my bone mass. I have a very painful nerve disease, Trigemnial Neuralgia. I was just recently diagnosed with Burcitis and tendinitis in the hip, groin and leg on the left side, and I know have it on the right ankle bone. It is very very painful and harder for me to walk. I Suffer in Chronic pain 24/7. I take lots of pain meds for my pain and other conditions. The meds aren't helping that well now because of the severity of the pain. I get very bad headaches. I am very dertermined to beat this disease, and overcome every battle that I come across in life! I am driven to be Positive and to be healthy! I Can and Will Beat This Battle! I Will also Win This Fight! I need lots of operations just to fix up my teeth, because my doctor left arch bars on my teeth for two years, due to an operation on my jaw that I had. He should have used braces, but because he chose arch bars instead, all my teeth are now gone and need to be replaced. I couldn't brush my teeth, because the arch bars were implanted right in my gums. I had a very serious jaw operation in NC, last May. Here were the risk of the operations: Parlayziation, which I curently am facing with my lip, lose of blood, and I was told that I may not survive, and if they had to revive me they would. But I pulled through, and I am still here fighting. Everyday that I am still here is the greatest day of my life! Meaning everyday is a great day! Even if I have challenges, frustration, and struggles. I went to Chaple Hill, North Carolina for a full joint replacement/implants, on both jaws. I had the operation on May 19th 2004. I am now currently on the road to recovery. My doctor here in Vancouver used my rib bones and put them in my jaw, which was a big mistake and risk because of my condition. I have severe pain in my head. The cause of the nerve disease is from a severed nerve from the operation in North Carolina. ~Live, love, laugh, and learn to appreciate life to the fullest~I have all my friends and Family backing up and supporting me in my fight. I have made lots of new and special friends that have helped me keep positive. My Bestfriend Jared who used to be a pro hockey player, has Supported me big time, and he is always there for me and my family. Jared used to play in NHL for the LA Kings, and he sent my dad an I to LA in 2003. Every where we went we were picked up by Limo's. Jared sent us to Disney Land for a day, and then the next we went to Enchino California where the LA Kings practiced. We went in there dressing room, and the stick room. I also went into the Lakers gym and press room. That night, Jared, my dad and I went to Staples Center. Before the game, I got to go in the players box and had my picture taken with Alexander Frolov. I was also mentioned up on the big screen with my picture up there. I thought it was so cool! Then we went to have dinner at the restaurant at the arena. After the game, my dad and I got to in the back and meet some of my favorite players. I met Dustin Brown, Lucky Luc (Luc Robitille) Derek Armstrong, Ian Lappierlle and of course Alexander Frolov. Then Jared surprised me, with a big basket of clothes from Jennifer Lopez! To top it all off, when we had to go to North Carolina for my operation, the Kings players and the Kings foundation raised 6 thousand dollars, U.S. for our expensis. They will always be our hero's! I love hockey as you can tell. I have many friends who play in the NHL, and WHL. I keep in touch with many of them through MSN Messanger, and email. Some of My friends in the NHL are: Shane Doan, captain of the Phoenix Cyotes. Ryan Smyth, now of the Colorado Avalanche. Mark Recchi of The Atlanta Thrasers, Jarome Iginla, of the Calgary Flames, Tyson Nash. Trevor Linden of the Vancouver Canucks. I got to meet Trevor and he gave us his cell number and when I went to Vancouver for treatment he gave my dad and I tickets. Then I got the Markus Naslund suit in 2004, and his bestfriend Gerry was in there too. Gerry and Markus arranged for my Canucks Trevor Linden jersey to be signed by the whole team. I love the Canucks, Flames, and Penguins. I also like to follow the Cyotes, Wild, and Avalanche. I like the Montreal Canadians and Ottowa Senators. I love baseball in the Summer time, and I like the Boston Red Sox, and Anehiem Angels. I like angels, dolphins, Penguins, butterfly's, cats and dogs. For fun I love to color, draw, easy arts and crafts, emailing, and reading. I love computer games, internet, and the computer. I like Board games, and Puzzles. I enjoy playing with my Playstation 2, Game Cube and Nintendo DS. My favourite colors are pink and purple, and I love music. Especially Country Music. I also love anything and everything to do with Space, I am very interested in the planets and learning about space. I also love anything to do with glow in the Dark, but mostly glow in the dark Planets and Space things. My fav. TV Shows are: Deal OR No Deal, NHL Centre Ice, Hockey Night in Canada, 7th Heaven, One Tree Hill, Grace Anatomy, ER,Extreme Makeover Home Edition, Dancing With The Stars, American Idol, Canadian Idol, Montel Williams Show, Maury Show, DR. Phil, and Oprah,My favourite Movies: Open Season, Cars, Curious George, Over The Hedge, Terry (about Terry Fox), Mozart and The Whale, Talladega Nights, Click, High School Musical, and Flushed Away. Most of all I love to Smile!!!!! Please leave a message in my guest book, as I love to read all the great comments, and I also love to know who visited my page. I love making new friends, and emailing others and sending email cards to them. My MSN Messanger email is: hockeys_mylife@hotmail.com Here is a Poem that I would like to share with you. My Auntie Shelli wrote it for me, and gave it to me at one of my fundraisers. It was in a frame too, and it is being published in the states.
For Jenna:
You Smile Though Your In Pain, You Encourage Others To Be Strong Even Without Knowing, You Help Them Sing life's Song. You Show Us How To Reach For That Star, The One That Shines Through You That Everlasting Glow Of Love, Compassion That's so True Your Struggles Don't Go Unrewarded, For God Must Have A Plan I Know You Are The Chosen One, To Help Us Understand Life Is Never Perfect, It Will Take Only What We Give There Is So Much For Us To Learn, So Much For Us To Live. I Pray Each That You Might Know, A Day That Holds No Pain If I was God, I'd Make That Wish, Not That I've Heard You Complain You Are My Inspiration, My Courage, My Ray Of Light Your Proof That Life's Worth Living, And You've Put Up Quite The Fight And So My Dear Jenna, In This Poem I am trying to Convey How Very Proud I am Of You, And Love You More Than Words Can Say By Shelli McHugh(My Auntie)
I love to recieve mail, and it always helps put a Smile on my face. Here is my Mailing Address If anyone wants to send happy mail,cards or letters. I love having penpals to write to, as well. Jenna Fowler
183 Waddington Drive
Kamloops BC.Canada
I wanted to share a quote From one of my Canadian Hero's and friend that I recently met. ~ Life Is The Ultimate Adventure: Why not live it as amazingly as you can. It all starts with believing, and believing starts with the right attitude.

Journal

Thursday, January 17, 2008 2:31 PM CST

Hi I am still keeping this site, but I just wanted to let you know that I won't be updating this site anymore. I made myself a new page on Caringbridge, cause I like the newer page better. I will be updating that site as much as I can.
www.caringbridge.org/visit/champ291

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Hospital Information:

Patient Room: At home in my own room!

UNC Hospital
Manning Drive
Chapel Hill North Carolina
919-401-0610

Links:

E-mail Author: fighter_smiley@yahoo.ca

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.