Utah Chapter - National MS Awareness Week

This week is National MS Awareness week. I opened my Facebook account last week to find a message from the National MS Facebook site asking me to find a way during the week to bring MS awareness to the attention of others. "Perfect", I thought. "That's why I have my little blog." So, here I am promoting awareness for MS. I read through the online booklet they sent me that was loaded with new research and activities that will be taking place all week throughout the Salt Lake area. I was excited to see they mentioned and gave credit to the awesome Scout who held the MS fair to inform kids about MS that I took my own children to. He definitely deserved credit and praise for that. I might even make my kids copy him in some form or another for their Eagle Projects. At the bottom of the article, it asked for each person with MS to share their story and then it had a little MS=, where they want MS patients to share what MS='s to them. I've thought about it and a whole lot of words = MS to me. Some are not so nice, others are! Ha Ha! But really, I've thought about that and I'm not sure what it ='s for me. Fear, anxiety, frustration, loss of ability and feeling, testing, Dr. Appointments, embarrassment at times, etc. But it also ='s testimony builder, greater compassion for others, strength I didn't know I had, knowledge, friendships renewed, new friendships formed, closer family relations, many acts of service rendered in my behalf, gratitude for good health......etc.

The other night I was at the Temple and saw a younger woman walking with the assistance of a walker. Her husband was right close behind helping carry her things. I found myself feeling so much love for this woman. I almost mustered up enough courage to tell her husband I would help her through the women's locker room. Just as I started toward her, another person stepped in and helped her the rest of the way. I thought about her all night. Did she have MS? Everything about the way she appeared told me she did. I don't have any idea if that's true, obviously, but I wanted to reach out to her and wished I hadn't waited so long. I think that's probably the greatest thing I have learned throughout this whole ordeal. I have such a greater love and compassion for those who are physically disabled. I recognize how wonderful it is to have a healthy body. I took that for granted before.

There is so much going on in the world of MS studies for a cure. I read the other day they are looking into bone marrow now, thinking that each person's bone marrow may carry things that could possibly be used to help fight MS. There is research going on that is finding ways to keep people from developing MS in the first place. Medicine is far better than it was in helping patients even just 12 years ago when I was working with MS patients. I only pray that a cure will be found within the next few years to help my young friends and I live mostly normal lives. I'm grateful to those taking the time to find a cure and to those who donate to the cause.

I was hoping to set up a team for the MS walk, but seeing as I am expecting and have MS, I am doubly tired and just want to hibernate. I will be all over that next year though, so watch out!I'm just rambling on now. But wanted to do my part in posting for the National MS Awareness Week. Here's to all my friends who suffer from this disease and to all those throughout the world who are part of this MS family. Thank you for your examples to me of courage, strength and Faith. May we all one day, live in a world free of MS!!!!!

You Are My Sunshine.....

Over the last couple of weeks, I have learned some information that I thought was important enough to share with all of you. I had my check up with Dr. H. 2 weeks ago. During that appointment, I asked him again what the odds are of me passing MS on to my children, or to any future children. He reiterated again, that the chances are very slim. His Father has MS, yet none of his siblings do, at this point. Dr. H. said that he gives his own children Vitamin D. He actually gives them extra. I had never heard before that Vitamin D is a good barrier and protector against developing MS. I have thought about it, and have considered doing the same thing for my kids. This morning, as I loaded on to Facebook, there was a message from the National MS Society stating the same thing. A study done in Australia is proving that Vitamin D and frequent exposure to the Sun has a huge impact on helping people to not develop MS. Just thought I'd pass that information along. I for one would like to do everything I can, to help keep my family from ever having to experience this disease. Hope that helps!

"Yesterday is but Today's Memory - Tomorrow is Today's Dream"

Last night I had a very surreal moment that one would have sworn was deja vu! Watching my nephew, I was told he needed me downstairs where we keep all of the toys. Finding him sad, and crying for mom, I picked him up without hesitation, carried him up the stairs and sat down in the study with him on my lap. No sooner had we sat down, than the deja vu feeling came. There I was, with my same little nephew, in my same high heels, on the exact same week where just one year before, he and I had fallen down the stairs. You may recall that within a month or so of that incident, testing began on my body to check for MS. It was a very strange feeling as I sat there and played all of that out in my mind again. Apparently I haven't learned my lesson as far as carrying children on stairs while wearing heels, but this time we walked UP instead of down and I did hold on to the railing with one hand!

After they left, I shared that experience with Trav. We both kind of sat in silence, and then he too brought up the fact that I hadn't learned my lesson, but both amazed that it has now been a year since all of this started to appear. We talked about all that took place during those first few months - Dr. Visits almost weekly, MRI's, Blood Work, Spinal Taps, Physical Exams, dreaded waiting on results, Priesthood blessings, ward fasts, many days and nights on our knees, trips to the temple, etc.

Going to bed with that on my mind, triggered the dream I ended up having, I assume. In my dream I was visiting teaching. One of the Sisters in the group asked me to share my experience this last year and what I had learned from it so far. Rather than talking about high heel safety, I found myself testifying to everyone in the room that more than anything, I learned that my Heavenly Father truly knows me by name. He loves me. He knows my heartache. He knows my struggles. He knows this hasn't been easy, but He also knows that this will make me stronger and has helped me grow closer to Him. I have learned I am never alone. There is always a friend, family member or neighbor asking how I am doing. There is always someone going through some kind of trial or another that needs my compassion as well. I remember getting choked up as I was sharing all of my feelings with them, so much so, that it woke me up. I laid there under the covers this morning playing that dream out in my mind. I realized how blessed I really have been this year. When all is said and done, I have truly learned all of that. This dream felt like a tender mercy from my Father in Heaven that all is well. All will be well. No, it hasn't been an easy year. A diagnosis of MS and a miscarriage in one year are definitely grounds for feeling sorry for myself a time or two, but when all is said and done, the blessings far out weigh the problems.As I looked at all of the Christmas Cards we received hanging on our doorway, I realized that every single one of the friends in those cards have been extremely supportive in one way or another this year. What a blessing you have all been in our lives. I count myself lucky to know each of you. As you visit and comment on this blog, you leave wonderful words of encouragement and are true examples to me of all that is good. Trav and I are so appreciative of all the love and support we have received. I don't feel deserving of it at all. I have been amazed at all of the new friends I have made, or old friends I have been able to reacquaint with from this little blog. I'm glad the inspiration came to start it, it too has been a blessing in my life this year. To vent, to share, to journal, and to inform has been very helpful.

I usually don't like change. I'm not so good at dealing with it. However, the last 2 years, as we have celebrated a New Year, I have to be honest and say I have welcomed it. This year with all my might, I am praying 2011 will bring with it some major happiness, good health for us all, and if the Lord sees fit, the opportunity to once again wear some maternity clothes......this time for a full 9 months.

Happy New Year to you all. May the Lord bless you always for having a major impact on my life.

Marion's Way or the Highway!

Just got back from a wonderful trip to Pennsylvania. Flew out for a week to attend the 40th Wedding Anniversary Celebration for a dear couple who are like family to me. While I was there, we visited and stayed with more of their family in Willamsport. One night as we were all talking in the kitchen, the back door opened and in walked Marion. She let herself in, introductions were made and next thing I knew, we were all piled in her car headed up the street to see her little cottage at the top of a rolling hill - because she said we should! On the way there, she confessed to stopping by their barn earlier in the week and taking all of the eggs their hens had laid. I'm not sure why, but I immediately loved this lady. She was so intriguing to me. Talk about the perfect epitome of the bossy, butinski neighbor! Awesome! And besides that, she truly did have the most adorable cottage in the most beautiful setting ever. From the doorstep you could turn in every direction and overlook rolling hills, barns, fields, wood fences and thousands of trees. When we walked in I was so mad I didn't have my camera. From an old barn, she created the most cozy little home. Antique dishes, furniture, chairs, dolls, statues, toys....etc. you name it were the decor for this place. A kitchen, dining area and family room were the main floor. Up a little flight of wooden stairs was a loft with two little bedrooms. She showed us all of the things she made with her own hands.....her doll house was to die for! It wasn't until we went to her basement where she creates some of these treasures, that I realized why I just might love her so much! As we got talking, it came out that she had MS. She was diagnosed in her early 30's as well. I asked her what life had been like for her and it was so inspiring to listen to her. She had a period where she lost her eyesight, and has had some of the numbness issues as well. The burning question for me at that point was....... "Do you take the shots?" Her reply was a definite "No!" She had decided they weren't for her. With her bossy little attitude she explained to us how she just pretended that she didn't really have MS and just went on with life. She chose not to worry about it or think about it too much. She just lived her life and did whatever she wanted. She had gone years without having any exacerbations and was doing great. Marion stays busy and is always on the go. I loved talking to her and hearing about her life with MS - She was a true inspiration. I love meeting people who appear to be doing well. It gives me hope. As we walked out to leave, I over heard her telling CaMarie how to run her barn, take care of her animals and live her life! And.....since I already decided I wanna be just like her with MS when I'm older, don't be surprised if I become a 'lil bossy too! After all, Marion is, and you'd never know she has MS!

Momma saw the Dr. and the Dr. Said......

Time to get on the shots.

I went in for my follow-up appointment today with Dr. H. I have a love hate relationship with that guy! Love him cause he gave me a whole new outlook on life with MS vs. the outlook my first Doc. gave - along with the fact that he listens and he cares, but hate him cause a visit with him only means one thing......I have MS. I went in to that appointment today feeling the best I have felt since this whole thing started 11 months ago. 11 MONTHS! How is it possible it's almost been a year since this journey started? I know I have stated at different points over the last few months that I have felt the best I have felt in a long time, but the truth is, each time I feel a little better, it IS better than the time before. However, this time around I would say I am pretty much back to my normal self again. Knock on wood. Since the first part of January, I have been numb from the chest down. I can now say, I am numb from the very tip of my toes to the very, very tip of my toes. And that my friends, is an amazing place to be at this point. I have to really rub and search for numbness around my waist and legs. Whereas before, I could feel the numbness just moving around in my clothes.

So, that is the reason I went in to my appointment with Dr. H. today very confident he would tell me, "this just can't possibly be MS." I've been telling myself that for weeks now. That's the problem with the ups and downs. When you're up.....you're really up and think you don't have it! When you're down,....well that's when it stinks. I used to think about it on a daily basis when the numbness was stronger. Feeling so good lately, I haven't given it much thought. I guess that's why my appointment today had me crying on the phone afterwards to my sweet friend Heidi, (thank you Heidi), and the rest of the drive home. Oh yeah, and to Trav later on in the kitchen as we discussed the appointment today. (I'm kindof a baby!)

Even though I feel SO good, Dr. H. still feels very strongly it is time for me to get on the shots. Because I had another new lesion show up on my c-spine on the MRI's from July, that is enough of an alarm to him that I definitely have the potential to have some serious things happen in my spinal cord that we could have a better chance at fighting if I get started on the therapy. He wants to send me in for another set of MRI's hoping to convince me that it's time.We are not against the shots. We just want a baby. To us, Shots and trying for a baby do not mix. He says Copaxone is a class C when it comes to pregnancy and meds. Studies show that there have not been any defects or harm done to a developing baby, but he is not aware of what that means in regards to fertility and miscarriage. His suggestion is to start Copaxone now, and get off of it as soon as I find out I'm expecting. Coming off of 2 miscarriages, the possibility of risk to fertility or a pregnancy is just not worth it to me. Dr. H. was very understanding of this when I shared my concern. I may be totally over-cautious about it, but I just can't help it. After talking a little bit more about the pros, cons and side effects, I was able to openly admit to him that along with pregnancy concerns, bottom line is.......I'm afraid to pull the trigger. Saying yes to the shots makes the realization of this whole thing all the more definite. And then......I cried. (I'm a huge baby when it comes to this, did I mention that already?) And, again, Dr. H. was very understanding. He knows. He gets it. He told me he is there to support me, in whatever our decision is, not to talk us into anything.

Trav would like to do the MRI's to see how things look and to see if there have been any new changes. I do and don't. I'm torn. I don't know which way to go. Dr. H. left us with an appointment to come back in Jan. If we choose to do the MRI he will schedule it. (Heck, we kinda want to just cause this set would all be paid for by the insurance. We've reached our out of pocket maximum!) If we choose to start Copaxone, we make the call and he will start the injection training, figure out our insurance coverage, and help us find financial assistance for whatever won't be covered of the insane amount it costs yearly to do these daily shots.

I have used "Our and we" through this whole post. Trav has been there for me through all of this. He drops whatever he is doing to be with me at every appointment. He asks questions. He shares his concerns. We then talk it out together and fight this thing as a team. Dr. H. reiterated today the power of positive thinking. I think as we joke while we are there, he feels that I am doing so well because we have tried to remain as positive as possible. I have Trav to thank for that. Without his love and support, this would be so much harder to go through.

After much thought now at the end of the day, Faith is our choice of therapy for now. We have a lot of praying to do to get the answers needed to know which path we should continue on. I want to know that whatever we choose to do, that it's the Lord's will.

As we get closer to Thanksgiving, I have to say even though there have been many tears, hard days, lots of fear, tough appointments and tests, I am extremely grateful and recognize how lucky I am to feel as good as I do. I have become so grateful for the little things. I ride a bike and understand it is a blessing my legs can do that. I play the piano and love every second I can feel the keys under my fingertips. I sing a song or talk to a friend and I have a voice. I get an eye exam and other than a little normal poor vision, I can still see. I have MS, yet I am still me and I still have all the gifts Heavenly Father gave me. I couldn't be any more grateful for that. I know the answers will come, I've just gotta gear up enough strength to face whatever they may be.

It's Autumn Time, It's Autumn Time......

And while that means it's my favorite time of year for many reasons, its also means I have to put away my trusty flip flops. I have never been a huge fan of flip flops til this year! I've always had a little problem with my feet and showing them off to the world in a pair of flip flops has never seemed exciting to me. However, when your feet are numb.....they truly become a gift from Heaven! I have lived in flip flops since the snow melted early this spring. Those tiny straps across the top of my foot are the only thing that rubs against it making the numbness bearable. I didn't realize just how much I have loved them til my little boy was playing in the Semi-Finals of Football last Saturday in cold temps! I put on a pair of socks, zipped up my boots and headed to the game. Man, is it going to be a long winter! I'm not loving having to wear shoes and socks again. I ran into this video on another MS blog and LOVED it! It is so far out there weird, but so is everything about MS and what it does! It describes in the strangest way, what it's like to have to put those socks on and feel the pins and needles!! Enjoy! (Click on the video to see full width)

Scouts Are: Honest, Trustworthy....and Inspired!

When we were going through our miscarriage a few weeks ago, we struggled to know how to tell the kids. Because they didn't even know we were expecting yet, we wondered if we should even fill them in on all that was happening. One night, Tyler found me in our front room crying. Putting his arm around me and with a look of concern on his face he quietly asked, "Mom, is MS eating your body?" My heart dropped. Here he was concerned that MS was just slowly killing me. I realized at that point, that we hadn't told our kids enough about MS and what it does. I also realized they deserved to know and understand why Mom was such a basket case those few days. Travis was gone at a church meeting, so I had to go at this one alone. I called them all around me and explained as briefly as I could about the miscarriage and then a little bit more about MS. Problem is, it's complicated. Since we don't know how I got it, or anyone gets it for that matter, it's hard for them to understand. I answered other questions that came the best I could, but then worried if I had told too much, or if I had told too little, adding to the confusion.

You can imagine my excitement then, when a couple of weeks ago, Anna, my long time friend and now partner in crime in living with MS, sent me a message. She told me about a Scout in Kaysville that was doing his Eagle Project all centered around MS. His Mom was diagnosed 5 years ago, and he always felt like there wasn't enough out there to explain to kids about it. So, when it came time to do his project, he and his Mom put together some incredible things and pulled off an amazing MS Kids Fair - all for Kids whose parents or other family members have MS.

We had to wake the kids up early Saturday morning, which they weren't too thrilled about. When I told them where we were going, they were actually very agreeable and got ready to go. As I was doing my hair, Ty was in my shower. "Mom, can boys get MS?" "Yes Ty, there are many men throughout the world with MS." "Oh, so, should I stay away from you then?" I immediately looked at Trav and said, "This is such a good Eagle Project. I'm so glad we're going!" We then took that question and hopefully helped Ty understand I'm not contagious.The MS Fair was Awesome! Trav got sick on the way there, and we had to take him home. Boy did he miss out. A nurse from an MS clinic in Salt Lake came and talked to the kids. She taught them the basics of MS by getting on their level. She asked if any of them had scars. Garrett showed some of his. She then went on to explain that his scars are visible. MS scars are not. The literal meaning of Multiple Sclerosis is Many Scars. She told how lesions attack the myelin covering of our nerves and cause the damage. The kids got a chance to tell about the people they know with MS and what some of the problems are they suffer with because of it. We were then taken into the gym to an obstacle course they had set up. Each one got a chance to try it as themselves. Then, they put on a pair of glasses that distort your vision, and a weight around their ankles and go through it again. It was an eye opener to see them struggle by adding those two things. Anna and I both commented on how it was to watch our kids gain an understanding of what life is like for us at times. They had prizes, an MS awareness bracelet making station, and an MS memory game to do. A cartoon video was shown from the view of a spaceship traveling the central nervous system and teaching us what it all looks like when MS is present.I loved this little sign the Girl Scouts made so much,
that I added it to my sidebar!
Made me and Anna smile!

I thought this was one of the most worth while Eagle Projects I have heard of in a long time. It was such a blessing for me to be able to take my children and have them spend a few hours learning about MS and have some of their questions answered. They had a great time! When we got home and made lunch, Ty offered the prayer. He thanked Heavenly Father for the opportunity they had to learn about what Mom is dealing with and how they can help her. I think we will have to make this a future Eagle Project of our own. Thank you Anna for thinking of us, and thank you Little Scout - you definitely deserve the honor of the Eagle Rank!