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This blog will provide brief descriptions of some of the events I have participated in.
8/03/2010: The ND NMSS ride went very well over the weekend. I was glad to be able to participate a little with the MS Ride. Thanks everyone for your encouragement and support, it is greatly appreciated! I am still chugging along on the pain study, we will be increasing the dosage next week, so I really may be living in a fog. The hope is that will be the right dosage and I will start seeing some positive results.
7/17/2010: Amanda turns 21 next week, I can not believe it. Amanda has accepted a full time position with Choice Financial in Fargo, good news is it comes with benefits. We are so very proud of her
I am currently in LA for my video shoot, I should be able to share the details in September. Quite the experience for a small town girl from North Dakota. I have completed the first 6 weeks of my pain study, no positive results and the side effects have left me very fatigued with a sore throat. We will see how the next 6 weeks goes.
7/07/2010: Happy Summer everyone. June had a few bumps in the road for me in regards to health insurance, social security disability and negative side effects to an MS study I am in. On the good side I am going to LA for a video shoot more details to come.
5/29/2010: Well it has been awhile so I am due for an update. No real changes with my recovery, the damage from the surgery remains. The end of February and beginning of March I was really struggling with my pain, fatigue, depression and anxiety. I kept setting myself up that the next thing would work and cure my pain. When that did not happen, I would become very down. I now have accepted that the pain is part of me. Although today might be a really bad day, tomorrow could be better. So I try to not let the really bad days bring me down.
I have accepted I am no longer defined by my 8 to 5 job, but I don't want to be defined by my MS or pain, rather I want to be defined by my smile, strength and determination to help others. To continue to do the things I still can and find joy in each day. I am back to running and biking a little. They are not pain free, but nothing is. I do find that the endorphins release from exercise is good for my pain receptors, my stress and helps with my sleep. I have always felt so free when I run, my dog accompanies me on our walks and runs, her excitement and joy when we are out there makes me so happy.
I am "Participating" in some MS events over the summer, I know that I won't be able to do all the miles, but am so happy to put in a few. The MN MS Bike Ride is June 12rh & 13th, I am captaining Clay Walker's Band Against MS team, we are working hard to get our team to 25 or 30 riders, we currently are halfway there. So if you want to join our team, please let me know & I will hook you up.
Amanda graduated from College May 15th and recently moved back home. Her job is 3/4's time right now, she does not want to commit to an apartment lease until she is full time. I am enjoying her being home, even though she accumulated a lot of stuff in a few years and our house is feeling cluttered and cramped
2/18/2010: Recovery from the surgery has been slow. We realize that although I received a reduction in pain in my eye and face, I am now experiencing new pains around my mouth and jaw. I tried a new medication which ended up poisoning my system. My blood levels are finally starting to return back to normal. I have found that wearing a mouth guard on both my top and bottom teeth helps with the pain. I am working on relaxation techniques to help me through the pain.
01/19/2010: The surgery a couple of weeks ago went very well. Dr. Gwinn and his staff were amazing, I was able to stay awake for the surgery, which helped my recovery process. I have numbness from my ear to my mouth and down my throat, we are unsure how much of this will remain. It makes it difficult for eating and slurs my speech a little. I also have some internal pain and swelling, that we hope will continue to improve over the next couple of weeks. The constant facial pain I was experiencing is gone, I do have eye pain that remains, but certainly has been reduced. Tomorrow I meet with my nuerologist and will visit about medication reductions. It is unlikely I will be able to return back to my career as they don't think I will be able to achieve full utilization of my eye for focusing and reading without pain and blurred vision. So my new line is I am retired from my career and now am a part-time speaker. Let me know if you would like me to speak in your area!!!
12/21/09: Sorry, I have not updated for months. I have been experiencing severe difficulties with Atypical Trigeminal Neuralgia, which is another condition I have developed due to my MS. In the past 7 months I have been challenged physically, emotionally, mentally & spiritually. I have had moments of complete despair unable to find any relief for the pain, that has been taking over my life. My love for my family & friends, faith in God, Zest for life and will not quit attitude have pushed me through. Thankfully by the grace of God I met Dr. Bowen at the ND Annual MS meeting in mid October, who felt I was a candidate for surgery in Seattle. After much research and with the encouragement from my Dr. Garnaas my neurologist, I made the decision to take a risk and improve the quality of my life. Thankfully Heather my best friend of 25 plus years lives in Seattle and provided a loving home for me to stay at for a few weeks. Her along with her husband Dan and beautiful daughters Zoe and Laila have given me an abudnance of hugs and kisses. Tomorrow I will undergo the procedure with Heather and my loving husband Alan by my side. It is difficult to be away from my precious Amanda for Christmas. But we ALL know this could be the best Christmas present ever!!! God has a plan for me, and my work is not done. I am ready to get back on track. I have 36 more states to visit for my 50 state mission. I want to take this opportunity to thank my family and friends for all their love and support, the prayers and comforting words have helped me through some dark moments this past few months.
Update July 23, 2009 - The last few weeks have been filled with doctor appointments, tests and lots of time spent resting on my couch. My neurologist put me on a medication to help me relax more, hoping that would simmer the nerves down. Both of my eyes reacted to the meds and became dry and irratated. This created a few restless and sleepless nights for me. I am now taking eye drops and hope things will improve quickly. I am now wearing a patch on the left eye as much as possible to allow that to rest. My MRI shows no new lesions, and slight changes in my prior lesions. So that is good, in that my MS does not appear to be going to secondary progressive. All the blood work has come back good, so it shows no underlying diseases or causes for my weakened immune system and low white blood cell count. I have been journaling what further strains my eye and creates increased nerve pain. It is believed that I have chronic eye strain and a rare form of Trigeminal Neuralgia that is only affecting my V1 nerves. My list of things I can't do unfortunately continues to grow, I pray that will improve with time. It appeared I would not be able to participate in the ND MS ride, however Chris & Brenda Potter came up with a plan. Chris will be my eyes as I ride on the back of his tandem for the ride this weekend. This will enable me to wear the eye patch and protective sunglasses, I will only be required to peddle and I can even ride with no hands:-) Although this is not recommended for an MS patients with balance issues.
Leave of Absence June 30, 2009 - Today I had to make a very difficult and humbling decision. On June 28 I was able to stop my steroid eye drops, my antibiotics and the oral steroid medication. On Monday June 29 I crashed, I started the day with an Opthamology appointment, worked for a few hours and than went to the Ear, Nose and Throat Specialist. It was determined that I did not have a sinus infection and that my pain and issues were from Trigeminal Neuralgia. I had to face the fact that without more steroids I was unable to perform most daily tasks, let alone my job. So a leave of absence was necessary for me to see if the rest would simmer the nerves down and improve my vision.
CO Bike Tour (June 2009) - Although I was on antibiotics and steroids, I was able to participate in the CO ride. I had been unable to ride much do to the eye issues and pain I was experiencing on the left side of my face. The doctors thought I had a bad sinus infection and I was noting slight improvement, so I decided to give it a try. The weekend weather was perfect, my team the rawhinies were amazing, and the scenery was breathtaking. I think the steroids were giving me a little extra energy. I met a lot of amazing riders on the route, I rode with a Cliff who had been a student at UND for awhile. I rode with the Biogen Team for part of day 2, Mark, Mary, Craig & John were great. I met and rode with Jen for awhile, turns out she is the nanny to someone Lori who works for Biogen. I got my picture taken with the CO govenor. My speech went well and was well received at the Saturday night party. I enjoyed seeing a cute 7 year old riding tandem with her dad on a custom bike. I was grateful for the hospitatlity of my host Cindy (Ci Ci) whom was not doing well on my visit, we have since learned she has a tumor in her leg my prayers are with you Ci Ci. I appreciated the bike donation from Bike n Hike, they were fabulous and hooked me up with a great ride. My CO Hero Award goes to Julie Brubaker who is one of the inspirations for Team Rawhinie, she completed the whole ride. I also was amazed by Jennifer one of the Team Captains for the Rawhinies, she is truly and inspiration and doing a great job in the fight against MS, it looks like their team may hit $200,000 for donations in 2009. AMAZING, what a honor to be part of this team!!!
MN MS Bike Tour (June 2009) - I had to cancel my plans to participate in the MN ride; it was a sad decision as I was looking forward to riding with Karn & Marcy on Team Jiffy Lube. However, since the middle of May I have been having pressure with my left eye and blurry vision. I had broken my glasses and had to wear my old ones for a short period of time, so I attributed my blurred vision and eye strain to this. However, upon returning from NE the pain and intensity worsened and I knew it was time to find out what was going on. Unfortunately that has not proven to be an easy task. The optometrist thought it was Iritis, the ophthalmologist said I was at risk for developing acute angle closure glaucoma and recommended surgery right away. So I had Iridotomy's done on both eyes a week apart. Unfortunately that was not the reason for the eye pain or blurred vision; it was now causing pain on the whole left side of my face. I thought perhaps it was a sinus infection so I went into primary doctor and he checked everything over and did CT scan, he noted inflammation in my left sinus area but did not think that was causing my issues. I had my annual appointment with my neurologist, she said my MS appeared to be doing well and she did not think my issues were MS related. Visited again with Ophthalmologist, he said Iridotomy surgeries went well and he thought it might be sinus related. So the neuro and ophthalmologist visited and thought a trip to Mayo to a Neuro Ophthalmologist might be necessary to get to the route of the problem, while the appointment is being scheduled it was decided to try a heavy dose of medications for sinusitis, just to see what happens. I am hoping to make it to the CO MS Bike, I for sure want to speak at the banquet, however I might not be able to ride. My recent eye issues is a harsh reminder how MS or your weakened immune system fromt he medications, can quickly put your life in turmoil. It also makes me appreciate, how fortunate I have been.
North Central States Chapter MS Retreat (June 2009) - Since I was unable to participate in the MN MS Bike Tour, I volunteered for a few hours with the NCSC MS Retreat in Fargo. Biogen sponsored the event and I was on hand to pass out some goodies, help wherever I could and answer questions by MS patients also living with the disease. The almost 30 women in attedance were from all over MN, ND and SD. It was a weekend of pampering for them. Thanks Biogen for sponsoring this, and enabling this women to feel special.
Lia Sophia Fundraiser - Teresa Thornton (May 2009) - Thank you everyone who ordered jewelry and to Teresa for donating her commission to the NMSS, we raised $275. Awesome:-) If any of you are interested in hosting a Lia Sophia party or purchasing jewelry please keep Teresa in mind. www.liasophia.com
Honored as a NMSS Community Leader (May 2009) - I was surprised when I was contacted by the corporate office of the NMSS and learned that I had been chosen as a Community Leader by the NMSS. I was humbled by the award, and want to stress I am not doing anything special, just what I think I should be doing. http://www.nationalmssociety.org/online-community/personal-stories/leaders-and-activists/index.aspx
Biogen Idec - Speaking Event in Minneapolis, MN (May 2009)- Thanks Mom for coming with me. We had a really good turnout. Since I was staying overnight I did not have to restrict my time afterwards visiting with MS patients. Mom & I enjoyed visiting my niece and her babies the following morning and shopping at an outlet mall enroute to NE.
Fargo Marathon 2009 - 2 person Relay Sheri4MS (May 2009) - 2 people, 2 loops of 13.1 miles, 2 times the fun! Thanks to the speed of my relay partner, Jerry Wendell Duab my massage therapist who improved his time by over 6 minutes.
I was allowed the opportunity to meet many of my friends and training partners at the head to head sections of the course during the first 5 miles of my 13.1 mile loop. After a crazy couple of weeks, I found the run to be relaxing in the cool 40 degree tempertures. Imagine my surprise when at mile 8, I realized I was on pace for a PR. I was feeling great and decided this would be the day I would finish under a 2:10, NO Regrets!!! When my Garmin hit 13.1 miles my time was 2:09:33. At the finish my Garmin read 13.42 miles and I was just over 2:11 for my official time. The relay exchange accounted for the little extra distance, or was it all the detours to fellow runners and fans to give hi-fives and hugs
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Biogen Idec - Speaking Event in Eau Claire, WI (May 2009) - I was so happy that Alan was able to accompany on the drive to WI, it was a beautiful day and a good way for us to spend time together. It also presented the first opportunity that Alan has actually heard me speak. Due to the nice weather outside, the crowd was smaller than expected. Dr. Robert Jacoby the presenting doctor did a wonderful job with his humorous and informative approach to MS, he did a wonderful job of answering questions and providing some very valuable information to all of us, especially for me with the management of spasticity. My presentation was well received, I enjoyed visiting with the participants afterwards and am excited to speak again in Minneapolis and Nebraska at the end of the month.
ND MS Walk (April 2009) - I was honored to push my MS Hero Susie Simmers at the ND MS Walk. Susie truly inspires me to be a better person and help others. Her beautiful spirit amazes me. I am saddened by the fact that there is not much I can do to help her or ease her pain. Susie reminds me how strong and destructive MS can be, and how WE must continue fighting for the answers for a cure, not for ourselves but for our children and grandchildren.
Colgate Mother/Daugther Banquet (April 2009) - My Mom Maureen, mother-in-law Delores and daughter Amanda attended this event with me. It was the first time for them to hear me speak. I was really nervous, but once I started speaking and felt the connection with the audience, my nerves were calmed. I truly feel so blessed and thankful that I am able to STAND and share my message of hope with others. I feel this is God's plan.
TX BP150 (April 2009) - I found out that Karn & Monique were also going to be traveling to from ND for the TX ride and they so graciously allowed me to join them. We were nervous leaving the floods of ND, wondering if the crest would once again rise in our absence. Unfortunately the floods followed us. Upon arriving in TX we were greeted with 11 inches of rain, hail and high winds. I worked the afternoon at the Expo as thousands of riders found out that Day 1 had to be cancelled. The NMSS was scrambling, as well as riders trying to figure out the logistics of if there would be a Day 2 and how one would get to Day 2. My ability to work under pressure earned me the official Co-captain status for Team BAMS. The cancellation of Day 1 provided an opportunity for the strangers of Team BAMS to bond as friends, what a wonderful group of people. Day 2 did go on, the heat, hills and winds made us thankful we only had to ride 1 day. Fred my TX Hero gave a new meaning to getting a little help from your friends. He literally pushed me up a couple of those big hills. I could have lived without the fire ant attack and the orange construction cone collision.
Las Vegas Conference (March 2009) - I was thrilled that it worked for me to attend this conference while I was in Vegas. The speakers were wonderful and the information was very good. I was saddened to learn that a 10 month old baby had actually been diagnosed with MS in Canada recently, I found it difficult to even begin to imagine the fears this family faced. During the conference I was able to share how excercise has helped my MS, and how doctors and nurses could explore this possibility with their patients.
MS Tour of Champions Florida (February 2009) - Alan & I enjoyed a few days in Florida with other MS Top Fundraisers from around the US. This is where I shared my desire to do an MS event in all 50 states. My idea was greeted with enthusiasm and invitations to join other bike and walk teams around the US. No turning back now. It was great to meet so many people that share the same passion as I do with the Fight against MS.
TN Jack & Back Bike Tour (October 2008) - I was asked by Clay Walker's charity to be a member of their bike team and participate in this ride. Tom Ward from IL had rode on our bike team in ND and he was the only person I knew doing this ride. So here I was a thousand miles from home on unfamiliar terrain, sporting new clip pedals getting ready to ride my 2nd MS Bike Tour. Thankfully my step-mom Sylvia and good family friends Don & Cathy had traveled with me from GA for the event, and my mom Maureen and brother Randy had drove down from ND. With their support and encouragement I was able to shake out the nerves. Day 1 was difficult mastering all the hills. I met many friends along the course and shared my story, always being greeting with tremendous support. Tommy Baggot was riding for his 18 year old daughter Hanna who had been recently diagnosed. We hit it off and he became my side kick seeing me to the end. He earned my Hero Award. The ride ended in a dry county and I almost got arrested handing Curt Walsh a beer at the finish, oops. Day 2 was much easier going the opposit direction and enjoying some downhills.
MS Advocate Conference (September 2008) - This past year I became an advocate speaker for Biogen, Idec. The company that produces 2 out of the 5 drug therapies avaialble for MS. I was privelaged to be able to attend the MS Advocate Conference with other advocates from around the US. It was wonderful meeting so many people that are living well with MS. It gave me a feeling that my desire to live each day to the fullest was the norm, not the exception. It empowered me to be stronger and push harder for those that can't.
Great River Relay (August 2008) - Running has enriched my lives with many friends, some of which have formed the running group Women High On Running. I have ran many miles with these ladies over the past few years. They have shared the stories of this crazy 30 hour relay where no one sleeps, you eat lots of sugar and you take a couple turns of hitting the pavement. Sounds like an opportunity not to pass up, right? Well I got pulled into the excitement and signed on the dotted line. It was a trip spending 30 hours straight with 23 other woman, whereas we sported hot pink and earned all the spirit and decorating awards. I had a lot of fun, but certainly was tired and ready for my bed. I was able to share with my friends that how tired they were all feeling was the best way I could explain MS fatigue, it just seems like there is not enough sleep to help you catch up.
Band Against MS Hero Winner 2008 - This award recognizes outstanding individuals living with or contributing to the cure for MS. These are everyday people who have made a difference in the lives around them.
ND MS Bike Tour (July 2008) - I had the fortune of hooking up with Team Road Rash on the first training ride, whereas I met along of great cyclists that helped me to learn the skills of riding. Every week I would go to IPC rides and make a new friend. It did not take me long to fall in love with this activity. During the 2 day ride in July of 2008, I found many moments where I felt so blessed for the love and support of the fellow riders and the tears would sting my eyes. I managed to ride 175 miles in 2 days with a lot of help from my friends. Jayson B. won my hero award, but Chris, Brenda, Son, Yvette, Gwen & Leslie were not too far behind. Again, crossing the finish line the tears rolled as I found myself once again overwhelmed by what I had just accomplished.
Fargo Marathon 2008 4 Person Relay (May 2008) - This is one of the hilights of all my events. My bargain with God in 2001 was to give me 6 active years with Amanda. What a complete JOY to have Amanda run the first leg of this race and hand off the baton to me. It took a couple of minutes for me to see the road, as the tears kept rolling that first mile. Than at the last couple of blocks Amanda, Amy, Suzy & I met up and ran into the Fargo Dome together
Chicago Marathon (October 2007) - 40,000 runners and 100+ temperatures made it a Hot day in the City. Today I did think I was crazy for being a runner. I was glad that I have learned to listen to my body, the warning signs came early in the race and I heeded them. I walked more than I ran, but in the end it was the same miles and I still finished under the 6 1/2 hour cut off time. I was thankful for Benita who stayed at my side for the whole race and for sharing this journey with Benita, Kim & Diane.
Spicer Triathlon (August 2007) - So I thought I should try my hand at a tri, forget that I am not a very good swimmer. So on a windy summer morning I found myself scared to death preparing to swim with hundreds of others. The water was cold, choppy and dark I made it about 1/3 of the way before I felt like I was going to drown. Due to the conditions life jackets were thrown out to the swimmers. My brother Larry was there to cheer me on briefly, I could see the fear and confusion in his eyes as he watched me swim. Finally I hit shore and made my way to the transition area only to get stuck while trying to put my shirt on. I desperately sought out help, ya know this is a race to some. Finally I was dressed properly and on my way, finishing 15 minutes ahead of the time I thought it would take.
2006 MS Achiever of the Year - It was an honor and a privelage to receive this award. with the help of family and friends we are making a difference for others.
Fargo Marathon (May 2006) - Today I accomplished something I never dreamed I would do healthy let alone as someone with MS. My family and friends were a big reason why I was able to accomplish this. Their love and support at every mile meant so much to me. Today the glass was more than half full, it was overflowing. I would name all of you, but I fear I would miss someone.
