Hello all my TN friends!! My training has brought just about every possible hurdle to overcome!! I tore some cartilage in my knee and have been rehabing it. Last week I got a severe muscle spasm in my calf muscle. And it has been incredible sore. I fight the weather and the daily TN pain. The side effects of the meds are tough to beat. My mouth is so dry. I carry a mouth refresher with me. I am a fighter and I am more than determined to beat the odds!! People with chronic pain are not supposed to run!! But, I am doing it!! I sure could use your words of encouragement. The race is less than 3 weeks from today. I can’t take donations directly but, I will try to upload the address where you foul send donations to research. Your word of encouragement from this site means so much to me!!
Go Girl !!! Good Luck xxx
I'm impressed! You have a good goal to strive for, Good Luck
You have amazing determination! How many miles are you going to run at the event?
Scott,
What do you think about doing something like Lisa is doig, but in the Wenatchee valley? Sorry, I won’t run, but walking would be great, and adding dogs (on leashes) and family members would be fun. People could run if they choose, or ride bikes, etc. I use a clear bubble umbrella on days with wind, or when it’s cool outside as a means of providing warmth and protection for my face. We could end the race downtown Wenatchee at Cafe Mela or someplace like that. I imagine it would be a walk for awareness. I wonder how guys dress to protect their faces from wind. I have no problem dressing a scarf around my head and face or holding a clear bubble umbrella when I walk, but it does look odd.
You go girl! Where can we read details of the race you are doing?
A lot of you have asked if you could support me in this race. I am not collecting my own sponsors but, I will include the information for donations.
Here is the information for the RACE TO SAVE FACE!!
choose featured event: 5 MILE RACE TO SAVE FACE
( there will be a 5 mile race, a 2 mile walk, and a 1 mile kids fun run)
DONATIONS TO HELP FIND A CURE:
make checks payable to:
RACE TO SAVE FACE
1293 Independence Circle SE
New Philadelphia,Ohio 44663
Thank you for all of your words of encouragement, I am running for…
I am so sorry I am not good with the computer. The website is:
www.rsracingsystems.com
I am running for all of us!! We all need HOPE that one day there will be a cure!!
I am so sorry I am not good with the computer. The website is:
Hi Lisa,
Isn’t running like you are doing causing you considerable pain? Does the pain go away, and are you becomng able to bridge over the pain by pushing your capability? This is very important information for the rest of us who, like me, are afraid to push too far for fear we will increase our pain. I loved running all my adult life until this TN hit. Physical exercise is something I must undertake with extreme caution, or risk bringing on really BAD pain. Running for the cause is fantastic, but please, please take very good care of yourself while you are undertaking this huge effort. By the way, thank you for taking action for those of us who are unable to do so at this time. What you are doing is amazing!
hi, i used to jog 8-10 miles a day but cannot "thump"head/face. so i walk 8-10 miles a day. be careful running unless you are as light as a feather on your feet. i've been yrs w this tn stuff and truly at end of the ropes. the walking is like prayer to me when i can. so notafraid, if i could run, i would and to benefit a cause for tn. have done many cancer walks, runs many many in past.
Notafraid said:
Hi Lisa,
Isn't running like you are doing causing you considerable pain? Does the pain go away, and are you becomng able to bridge over the pain by pushing your capability? This is very important information for the rest of us who, like me, are afraid to push too far for fear we will increase our pain. I loved running all my adult life until this TN hit. Physical exercise is something I must undertake with extreme caution, or risk bringing on really BAD pain. Running for the cause is fantastic, but please, please take very good care of yourself while you are undertaking this huge effort. By the way, thank you for taking action for those of us who are unable to do so at this time. What you are doing is amazing!
Greetings Notafraid,
I think it would be a good thing, but I wonder how much support or participants we could get since Wenatchee and surrounding area is not very big in population like Spokane or the Seattle area. I don't know where Cafe Mela, is it on the Ave? When the wind was bothering me I pulled down a stocking cap and have a coat with a big collar that I could pull up and just had my eyes exposed. Not pretty or 100% effective but got me by.
Scott
Notafraid said:
Scott,
What do you think about doing something like Lisa is doig, but in the Wenatchee valley? Sorry, I won't run, but walking would be great, and adding dogs (on leashes) and family members would be fun. People could run if they choose, or ride bikes, etc. I use a clear bubble umbrella on days with wind, or when it's cool outside as a means of providing warmth and protection for my face. We could end the race downtown Wenatchee at Cafe Mela or someplace like that. I imagine it would be a walk for awareness. I wonder how guys dress to protect their faces from wind. I have no problem dressing a scarf around my head and face or holding a clear bubble umbrella when I walk, but it does look odd.
Scott,
You are probably right. Wenatchee is small. Maybe in due time…
Wow, if I ever see a person walking down the sidewalk with all but his eyes covered, maybe it will be you. At least women can use colorful scarfs to keep things fun. I guess guys can do the same thing!
Laurel
Hi Notafraid, love the name by the way!! This race has been a huge challenge for me. I have gone from being bedridden for 3 months, to shopping in a wheelchair to walking and now running. I have days where the wind and cold really get to me and I looked like an Eskimo running until the warm weather hit. I have taken my training slow and have worked up to the level I am now. I believe I have the best pain control I have ever had. I don’t know if the rush of running releases natural pain relief or if it is all in believing it does. I love it and look forward to my time out on the trail. I have pushed myself to a limit I thought I would never see again in this lifetime. I am 40 years old and am running better than I did in highschool. I have to say as long as I wear the appropriate gear for the weather I do fine and it doesn’t cause me more pain. I have my days just like all of us here do when the pain is so bad I’d like to give up. I stay in bed and rest and get through it. I have more good days than bad and I know the bad day won’t last. TN has made me a stronger and more determined person. I am a nurse and it has given me a level of compassion I never had. I am running this race to prove only to myself that I can beat the pain and that I will beat the odds!! People with TN can’t run, it just isn’t true!! Thanks for all your support. I dig deep inside sometimes to find my own strength and to hear words of encouragement from my TN friends really helps!! Praying for a good day for all of you!!
Hi Lisa,
What meds are you currently on? Have you had the mvd surgery? How long have you had TN?
I was diagnosed with TN in 2008. I have type 2. I had an unsuccessful MVD in Sept of 2010. And after that tried many different types of blocks, acupuntuncture, massage, upper cervical chiropractor, and then had a peripheral nerve stimulator placed in Nov of 2011. I take pretty high doses of meds I think. Trileptal 1800mg/day, baclofen 40mg/day, amytripyline 20mg/day, cymbalta 60mg/day. The side effects are not to bad for me. I get drowsy sometimes and the dry mouth thing is aweful. Like I said I have my share of bad days but, the good outweigh the bad now!! I am hopeful for a cure in my lifetime. I don’t know the cause of my TN other than the artery and vein that were supposedly bridged off the nerve with the MVD. When I realized the MVD was not successful had to be my lowest point in my life. But, with an awesome husband and strong faith I made it through. I have learned that living with TN takes a very balanced life with more rest than other people may need. I hope someday my journey with TN could help someone else!!
Laural,
Maybe someone can come up with an idea that can effectively get the message out to small towns/cities, ers, doctors, hospitals etc. There is always hope. Thankfully the wind does not bother me as much now.
Lisa26,
I am happy you can run and wish you all the best on the race and training. I can not run or exert myself to much as it can bring on an attack. The more I exert the more my face gets numb and if I keep going an attack could follow. When my attacks were at their peek and exerted to much the only thing that would eventually calm it down (not all the time) would be to sit in a recliner in a dark room. Hopefully those days are gone forever.
Scott
Notafraid said:
Scott,
You are probably right. Wenatchee is small. Maybe in due time...
Wow, if I ever see a person walking down the sidewalk with all but his eyes covered, maybe it will be you. At least women can use colorful scarfs to keep things fun. I guess guys can do the same thing!
Laurel
You are a nurse and still work? How do you do that with the need to take so much time off for pain and restoration? I love that you are doing this race and hope we all find ways to stand up for more research too. Hang in there. What you are doing is so important. You can do it!
Lisa,
Just wanted to let you know that your run for the cause race had some demonstable results! Because of what you are doing, yesterday and today I ran. I cannot be afraid to take the chance of greater health just because the past has conditioned me to avoid taking certain risks. Thank you for all of your hard work and determination and for giving me the courage to bridge over a fear I didn’t recognize.
.
I never know when my TN pain is going to strike me with tsunami force from day to day, so I take each day in stride. It’s hard to accept this way of living from day to day (I feel so inadequate). It’s quite impossible to count on me to do something whether trivial or more involved, because pain may disable my participation. This is hardest to accept when it comes to being involved with my grandchildren. But anyway, this morning I ran. Thank you for getting out there and being our “Joan of Arc”. RUN FOR THE CAUSE!