In Honor....

On Sunday, in our meeting with the Youth, we planned to Hike Ensign Peak in Salt Lake City. I knew immediately, that I wasn't going to want to sit out and watch them drive off to this activity without me. I made up my mind, then and there, that I was going on this Hike. I have wondered all week how I was going to do it, if I COULD do it, and lastly......how I was going to ask permission from my hubby! (He is the new "Father" of my health!) It's probably a really good thing he is so concerned about it, because I'm at the point where I'm kind of sick of it all, and just want to do what I want to do. So, he helps keep me in check. I did feel like a little kid asking to go play with her friends though! I promised myself I would stop if I was feeling like I couldn't make it. I promised I'd go slow, and rest often. I knew it wasn't a real strenuous hike though, I had done it before. Ironic thing is, just as I had determined I wasn't going to miss out on one more thing because of all of this, I found out in a phone conversation with my Sis.-in-law this afternoon, that today was "National MS Day!" Sweet, that really locked me into the deal! I was doing something I wanted to do today, and I was doing it for all of us out there with this disease. I have been so afraid to exercise or to go too fast at anything. That has been frustrating. I made arrangements for one of my YW and one of the other leaders to go 25 mins. ahead of the rest of the group with me, so I wouldn't hold anyone up, and could be at the top waiting when they got there. That would give me the time to stop whenever I needed and for however long, without feeling any pressure to go faster than I should. End of the story is.....I made it! It took me close to 30 mins., but that was with a 10 min. break 3/4 way up to get off my feet and rest. Very humbling to be this young and not be able to make such a simple hike. The youth did it in 12 mins. Oh well, moral of the story is.....I did it, and Dang it...It felt good! It was a lift to my spirits to be there with them and to see that beautiful view! Happy MS Day!
Hmmm, is that an oxymoron?

To say, or Not to Say?

I found myself in an odd predicament the other day when I opened my email. There sat an email from one of my dear friends Debbie. Debbie and I met in High School and were instant friends. She's one of those people that everyone loved! We served together in Student Body office and then went on to be "Roomies" at Utah State. Deb is the glue that keeps all us "Roomies" together. She emails every few months to check in and see how we are all doing, and often plans reunions. Last week, her "catch-me-up" email came in. "How are you all doing?" "What are you all up to?" One by one the updates came in. They were all so upbeat. One was on the Beach in Miami, one just ran a marathon, another had a beautiful new baby boy, and the other was getting her Master's Degree to start a new Therapy business. When it came to writing my update, I have to admit.....I wrote it 3 times. Each time, I ended up shutting the computer down and not sending anything. Finally, 3 days ago, I decided that regardless.....my new life was my update. That was what I had been doing for the last 5 months. They were my friends. They deserved to know. The thought came to my mind that if we planned a reunion for the summer, there was a possibility, that I just might show up not quite looking the same. Then how awkward would it be! So, I sat down, and gave them my update, as pathetic as it was. I wasn't on the Beach, I wasn't in school, or training for marathons. I was testing for, and being diagnosed with MS. My reasoning in this post, is because of their responses to my update. How blessed I am that through this trial, I have had amazing amounts of support. These 5 sweet friends of mine, have each replied with incredible words of love and encouragement. I am so grateful for wonderful family, friends and neighbors for all of the outpouring of love we have received. I have been treated to manicures and lunch, flowers, phone calls, meals, letters in the mail, several hugs, long talks and babysitters. I have received the blessings that come through many prayers and fasting. I have truly been buoyed up by all of your support. I am grateful today for all of you who have graced my life with your friendship. I could never make it though all of this without each of you. Thank you for taking the time to make me feel so loved.(This poor soul, took my number off my check at a gas station. I went out with him once and then made him dress up like Santa and surprise my Roomies for Christmas. He didn't call much after that!)

Strength in Numbers

A funny thing happened a few days after my initial diagnosis. I sat down to open my Facebook account, just like any other day. As I started reading everyone's posts about their goings-on......I notice I had an in-box message. I was so surprised when I opened it, to find my long lost High School buddy, A.S. We hadn't talked in years. She had found my family blog from my profile and just happened to read my post about my test results. She immediately sent me a message. She let me know I wasn't alone. I had her by my side. When my eyes read the words that she too, was in my same boat, part of me cheered with joy that I had someone truly "in my corner!" But the compassionate side of me wanted to cry, that yet another young mom had this horrible disease. We set up a time to meet for ice cream to talk things out. I have to admit, that part of me couldn't wait to meet up with her and hear how life has been since MS became her companion. But there was a part of me that wanted to run and hide. Would I be more scared after talking with her? Would it make me more sad? The answer to both, when all was said and done, is definitely not. It was incredible to sit with her. She is amazing! She is a new hero of mine. A.S. has been living with MS for almost 2 years now. To see her sitting there, looking as beautiful as ever, and happy even, was good for my soul. She shot things straight to me though. She has had her face droop. She is numb on the whole right side of her body. She has had experiences trying to reach the button on her car radio but feeling like someone was pushing down on her arm so she couldn't reach it. Her mouth has gone numb before. But the fact of the matter is, she works as a speech therapist. She continues to Mother. She is an amazing wife. Life has gone on for her. The thing that was most comforting in meeting with her, was the fact that, right now in my life and circle of friends and family.....she is the only one who truly gets what my numbness feels like. She gets what being diagnosed does to your spirits. She understands my fears. She sees Dr. H and loves him too, even though we both think he is a titch weird, (but that's kinda what Neurologists are! I know, I have worked for 3!). She understands that there are good days and bad days. Never once did she tell me, "It could be worse," or "At least it's just MS", or "So and so has had it 30 yrs. and is just barely in a wheelchair." Yes, I have had all of those said to me. I even had someone go into complete detail about someone they knew with MS and within just a few weeks was in a wheelchair and on a bag for their bowels. (My other friend Wendy and I are in the process of collecting phrases we have both heard for certain trials and are going to make a book titled "What not to say!" It has the potential to be a best seller!) A.S. and her family came over for dinner on Saturday night. It was nice to have our husbands together and talk about the changes that come with all of this. I am grateful to have her as a sounding board and especially grateful to I know if my speech ever goes....she will be there for me with that as well! A.S. will you charge me a copay? I believe in every trial there is a silver lining. A conversation I had at church yesterday helped me to realize that even more. We never know why we are asked to go through things in this life. Through this, I have come closer to my Heavenly Father, I have felt the love of friends and family, and now, I have reconnected with a dear friend. A.S. thank you for having the courage to contact me. I hope we can help each other along this new journey we are both on.

Full Circle

Just when I felt like things were getting better, the numbness attacked again to remind me that those lesions are still there, waiting in the wings. This whole thing is just bizarre to me. I really was about 96% healed. I felt really good. I'm sure that's the reason I'm where I am today. Because I felt good, I cleaned my kitchen out. I went all over this weekend for Mother's Day. I cut out bags for the Pioneer Trek. That's where the frustration lies. I didn't do that much, but yet, somehow I have over-done it and am now numb again from the chest down. It was hard to sleep last night. My legs ache. They feel tight. Last night I couldn't keep my spirits up. I was sad. My sweet hubby took over and made dinner, cleaned up the house, and helped get the kids ready for bed - letting me just lay on the couch. I felt sorry for myself. I hate that feeling! Three days ago, I said I wouldn't let this win, and last night I felt like I opened the door and let it take over! Tons of fear crept in - does this mean it REALLY is MS? Not sure. Do I call the Doc.? Not sure. I'm afraid of what he'll say. There's not much he can do to help me anyway - it is what it is. Boy, this is a downer post. But, it is also the reason I set this up - to document each step of this journey. None-the-less, I got up and showered, took the boys to school and now I'm going to do my hair and head to the Dentist. Life goes on - numb or not!

Hello Dr. H. - It's So Nice to Meet You!

I have been amazed lately. Usually I am an open book. Usually I run and tell my family everything I heard at the Dr.'s office. That has not been the case going through all of this. After each visit, there is so much to process. So much to think about. So much to figure out. So much to sink in. I have literally come home from each of my appointments a little numb. There is definitely shell-shock with this whole thing. It has taken me sometimes til 7 o'clock in the evening to even call my Dad and fill him in. The first Neurologist I went to was one I used to work for. I felt that he would give me the best care since we knew each other. However, that was not the case. I like him as a person, but as a Dr., I did not love his bedside manner or the way he ran things medically. Never did he show me or review any of my test results. He walked in to the appointment, sat down, told me what the results were and gave me the next set of instructions to follow. The feeling Trav and I always had, was if we didn't do what he suggested, then we were somewhat stupid and would have a hard time with all of this. I feel it was a blessing he wasn't on my insurance and that it became monetarily important for us to go to another Neurologist with this being a long term thing. Otherwise, we never would have met Dr. H., and never would have been given the hope and new insight he gave. I loved meeting with him. He spent over an hour with us, talking everything out. He even got his laptop and for the first time ever, showed us my MRI's and what everything looked like. Finally there was proof that I really did have lesions on my spinal chord. He explained everything in full detail. (When I asked him if my brain was cute, he answered "Definitely!"

I knew then, we would get along quite nicely!)

(I couldn't get the angle quite right to show all 3,
but those are the lesions.)

He listened to my whole story from the very beginning. Dr. H. did his own Neurological exam on me. After we went over all of that, he turned to us and said, "I'm not 100% convinced you have MS!" What? Dr. V. said it was time for the daily shots. Dr. V. said no more babies. Dr. V. said if Dr. H. didn't agree with his findings, it was time to find another Doc. Dr. H. told us that if it weren't for the 2 major red flags I have, he would rule out MS all together. He said my brain was perfect, my blood work was perfect. I passed the neurological exam with flying colors. I was healing from my numbness really, really well. But, the fact of the matter is......I have 3 lesions on my spinal chord, and I have O-bands in my spinal fluid. If it wasn't for those two things, he would wipe my slate clean. He said that the number of O-bands I have are EXTREMELY high - I have 9. That is not good. That is a huge indicator that MS is a big possibility. However, he gave us some insight that there are other things out there that can present themselves as MS. The one he is leaning towards for me is something he calls A.D.E.M. (This is where I sound really smart when I say this out loud, so I like to say it often!!) Acute Disseminated Encephalomyelitis. This is basically an autoimmune disease as well, that presents itself like MS in the fact that it is also a demyelinating process. It attacks the myelin sheath that covers the nerves. It can be caused by a simple cold, or a vaccine - by the infection spreading into the spinal chord. As we talked about my history, he thought to bring this up because I had the H1N1 shot in November. After about 2 weeks, I developed a horrible sinus infection that spread to my lungs. I was on antibiotics for 10 days. As soon as I finished, it came back full force til the middle of February. Those were some major points of interest to him regarding this A.D.E.M. The only problem is, there is no way to know for sure if it's MS vs. the other for quite a while. We need to watch and see if I have any more attacks. Follow-up MRI's need to be done in a few months to see how my lesions are doing or if there are more lesions coming on. If I continue to be free of lesions and attacks, then he will lean more to the A.D.E.M. If more lesions and attacks are present, then he will be able to fully rule that out and say it is MS. Because of the lesions and high number of O-bands, he is keeping me at the possible MS diagnosis. He says those two things are evidence I am heading there. He gave us great hope though in telling us that it is his opinion that I should not let this disease run my life. If I have hopes and dreams, achieve them. Don't wait around for this disease to take them from me. When we asked what his opinion was for another baby, he said to go for it! I cried. He was saying everything we have been wanting to hear. He brought back all of the hope that had been taken away when the "Death Sentence" was first given. Before, dreams were being taken away. Now....we were told to not only live our lives, but to love life. He explained that the two things leading scientists closer to a cure for MS were Stem Cells and Women's Estrogen. He explained that that is proof enough that pregnancy can be a help in the fight against MS. He said that having a low immune system and higher levels of estrogen helps keep MS attacks away. Studies are showing that many women feel their best with MS during pregnancy. The only concern is that afterward, the chance of MS attacks are 40% higher. So, the way we left the appointment is: go ahead and try for a baby. If I'm not expecting by July, MRI's of my brain and full spinal chord will be done again to see where I'm at. If I am expecting - Great! The MRI's will be done a few weeks after delivery. Dr. H said he does not jump at the chance to put people on the shots. The side effects of depression, flu-like symptoms and injection site infections are sometimes worse than the actual attack. He feels like they are very helpful to people in fighting MS, but he will wait for me for a while to see where I am headed. He was amazing and a complete answer to prayer. The positive outlook he had on this was all I needed to lift my spirits a little. I will say though, I was very heartbroken when he wouldn't pass me off to go on the Pioneer Trek this summer with my YW. I was really looking forward to that. He told me to get serious about what is going on inside my body. The problem is, I have been feeling better, so in my mind.....I am fine and can conquer anything I want. He explained that the lesions on my spinal chord are exacerbated by heat. If I get over heated, or over-exert they can get larger and cause more damage. I asked if I could just stay back with the food committee and cook, and he said that it was serious enough, that just being outdoors in the heat could cause problems if I couldn't get somewhere to cool my body temp. down. He looked me straight in the face and told me it was serious enough it could cause paralysis. The point was driven home and I have realized my new limitations. This is all new territory for us. I have good days and bad days. For the most part, I am happy and trying to just take care of my family. It has been nice the last week or so since the appointment, to not think so much about myself anymore, or to worry so much about this. It has been all-consuming that's for sure. But, I have felt all along like Dr. H does......I will not let this take my life from me. To the best of my abilities, I won't let it win.