Orange You Glad?!!!

Oh this poor little blog.  I have to admit.....I was kind of surprised to see it still exists!  Ha, ha!  I guess that is a great sign that all is well on the MS home front for me right now. I feel really blessed to experience awesome health.  When you go through bouts of not so good health, you quickly learn to enjoy the days of good, don't ya?!!

I had a very surreal experience the other day as I was waiting for my eye appointment at Sam's Club.  Yes, I go to Sam's for my eye Dr. and.....so far, so good!  Anyhow, there I was waiting, pulling faces at my baby and checking the clock, when a Sam's Club manager came over to speak with the girl running the Optical Center.  "For the whole month of Feb. we will be participating in a fundraiser that is super dear to my heart, so I'm wanting our club to raise the most money towards this cause over any other club in the Nation. Are you willing to give a certain amount of your paycheck towards MS?" The girl looked up to see the form the manager had.  I looked up as well.  How weird to sit there as an MS patient  - wondering if the girl would be willing to help towards something that would eventually affect me.  Without hesitation, she signed the form and said she would love to help!  As the manager started to walk away, I touched her arm and said, "As an MS patient myself, I'm grateful to all of you for your help!"   She then told me that her sister has MS and so she is going to try her hardest to raise the most money a club has ever raised!  So, for the whole month of Feb. all you MS'ers, or those of you with loved ones dealing with this daily, get out to Sam's Club and buy oranges to your hearts content!  For every dollar raised, Sam's Club will match the donation to present to the National MS Society!  Thank you Sam's Club!

If Only.....

We could bottle this.....

Every Person out there struggling with MS would be cured!

We just had our little miracle baby.  The entire pregnancy I felt extremely good.  It was as though I didn't have MS.  I LOVED it!!  Every ounce of numbness I had prior to expecting, went away.  Completely.  I would recommend pregnancy to any woman with MS.  It really is the cure all......

I just wish it could have stayed that way.  It appears I still do have MS, dang it!  Within just a week or two after delivery, numbness reared its ugly head again.  Socks no longer feel good due to the numbness on the bottom of my feet coming back.  The inside portion of my legs are experiencing some numbness as well.  It used to be that when I put my chin to my chest, a zinging sensation would run up my spine.  Now it is just when I turn at my waist or move my legs a certain way that the zinging comes in to play.

I cannot complain.  It isn't horrible.  Totally tolerable, actually.  I was just so confident that I was in total remission and that I wouldn't have any more issues.

Talking to my hubby the other night about it all.....we are both completely amazed that in our day and age there isn't a cure.  Especially knowing what we know about pregnant women with MS feeling 100 % or close to it during the whole pregnancy. It just seems that there should be a way to bottle whatever it is during pregnancy that makes it go away.  If I wasn't getting older, and if it wasn't so hard for us to keep a pregnancy, I'd opt to have a bunch more kids!

 Thanks to my new little buddy for being just what the doctor ordered the last 9 mos for my physical self, and just what I ordered forever for my emotional self.  You have healed me in so many ways!

From the Mouth of Babes....

We celebrated my Grandparents 60th Wedding Anniversary the other day at a luncheon of family and friends. My 4 yr. old daughter loved it. She ran all over the place talking to people and eating all kinds of yummy food. At one point, I ran in to her, as I was heading back to sit at our table and she said, "Oh, Hi Mom! I just told that whole table over there about you!" I looked in the direction she was pointing and realized it was a table of my Grandparents friends that I had never met in my life. I smiled and said, "Oh really, what did you tell them?" Her reply has come to mind a few times since then, and makes me laugh when I think about it. "Oh, I just told them that you fell down the stairs with your nephew and now you have MS." Really Sis? That's what you decided to tell them about me? That's pretty funny! If only I had been a fly on the wall to hear the whole conversation and witness their response. Now, that's not something you hear every day!

Learning from Others.....

I opened my email this afternoon to find a link to a video clip from the Today show this morning from my sweet Sister-in-law. I watched it and have to admit, it was through tears. I know this is video overload in the last couple of posts, but this is the whole reason I set up this blog was to share and learn from all of us in this MS world. I LOVED this clip and hope it will bring some hope and encouragement to others as well. I have been contacted lately and have come to the knowledge that a few more people I grew up with have been diagnosed with, or are in the process of being tested for MS. I'm amazed at how prevalent this crazy disease is becoming. Of course, it's like when you start looking for a new car, all you see on the road is THAT car.......but I am blown away at the amount of people I have heard of in the year and 1/2 since my diagnosis. On a totally different note, before I share the clip, I wanted to share what I learned on Facebook yesterday from the National MS Society in regards to heat.......otherwise known as "Summer Weather!" We have finally hit the high numbered temps. Our city's Heritage Day Parade is this Saturday and I've already thought about how I'm going to stay cool out there on the pavement with the sun on my back. Last year we bought a huge umbrella, and it's kind of a joke, so with being pregnant and having to hide from the heat all together with football and other activities coming up, I'm in search of a new kind of shading tent. I thought it was interesting though, when a neurologist was interviewed by the MS Society. She gave tips on staying cool while not having to miss out on summer activities such as: Taking a cold shower just before leaving to be in the heat - apparently that keeps body temps lower for up to 2 hrs. Also, taking a thermos full of ice chips - with ice chips in your mouth, core body temps stay 2-3 degrees lower while in the heat, drinking lots of cold water, staying shaded and lastly - wearing a neck cooler while outside. I seriously think I'll try the ice chips and see how that helps. I enjoy walking around and taking pictures at my kids football games way too much to sit down under shade the entire game. Plus, they can't hear me screaming my undying support from under there! Hope that helps those of you needing to stay cool this summer! Enjoy the video.....thanks again Ally!

Visit msnbc.com for breaking news, world news, and news about the economy

"You Can't Underestimate Happiness" - Clay Walker

I have been asked a lot lately how I am doing. I know I have been horrible at keeping up this little blog the last few months. But the truth is, I haven't had anything going on in the MS portion of my life to really report or share that would be interesting enough for those who stop by here. I truly feel as though I don't have MS right now, so I have taken that and run with it! I joined the National MS site on Facebook last year. I came across a video they posted one day that followed a lady with MS and her quest for a baby. It was so interesting and helpful to me at the time, so I was trying to find it again on Youtube the other day to watch again how life was after delivery for her. I'm starting to have some thoughts about that now that I am almost 7 mos. The chances of having a relapse are higher after delivery, so I'm trying to prep myself for what may lie ahead. As I was searching for that video, I came upon another put out by the MS society of an interview with Clay Walker. I had heard he has MS, but had forgotten. I clicked on it, and loved it. It talks about every single emotion I have had over the last year or so since diagnosis.....and it's funny.....cause it explains exactly where I am right now in respect to my feelings. After watching, I have decided again, to not worry about post delivery at this point. I'm not going to search things out about it. What happens after our baby comes, happens. It's out of my control either way. So, as Clay Walker states, "You can't underestimate happiness." I am going to enjoy the happy, basically MS free times right now, and let the chips fall where they may in a couple of months......while crossing my fingers extremely tight, of course!

D-Day

One Year Down.....

One year ago today I received the news that my spinal fluid was positive and that the lesions on my Spinal cord reacted to the dye - which meant, a diagnosis of Multiple Sclerosis. At that point, there were so many questions, so many things to think about, and so much fear.

I have to say, a year out now, I have a little more hope, a little more knowledge and a whole lot of gratitude that I'm a year into all of this and for the most part, am perfectly healthy and happy. I'm not sure why MS affects people so differently, one from another. You'd think it would come and do it's damage, and everyone would be attacked the same way. But, some of us have it in our brains - some of us don't. Some of us have it in our spines - some of us don't. Some don't have any lesions anywhere noticeable to machines or lab work - but have more symptoms than anyone else might have. That's what makes it a very complex disease that can have massive affects on some, and very little on others.

I have been told that because of the extremely high number of O-Bands I have in my spinal fluid, and the amount of lesions on my spinal cord in such a small area, that life should be very different for me right now, than it is.

I can't help but thank my Heavenly Father for blessing me and my family for the past year. I have had some struggles, I have been numb, and have had to miss out on some things because of this, but I also recognize that not once, has MS stopped me from moving or being a Mom for the last 365 days. To me, that is a huge blessing. I know that the possibility of me feeling this well through my whole life is very slim, but for now.....I am so grateful for the health I have had since the diagnosis was made.

My outlook on this is a little better right now. I do think it is because I haven't really been very focused on MS the last 5-6 months. I noticed when I thought about it constantly, or worried, I was worse off than just living life, staying positive, and putting the time spent on those thoughts towards something else.

I have been so grateful for the people I have been able to reconnect with over the last year while going through this. Anna and Jenny, you are huge examples to me and I'm so glad we've had each other to support and relate to.

It has been so neat to get emails from others who have happened to stumble upon this little blog and ask questions or Dr. advice, or just to offer support.

Yes, a year out.....Life is good. Life is great.
I only pray it might stay that way for as long as possible.

Talk About a Miracle.....

This last week in church, our Sacrament Meeting talks were all centered around Miracles. Each speaker shared times in their lives when they had experienced a miracle of some form or another. I have thought about that the last few days.

Ya know how we all have those little quirks that we do, that no one would know we do? For example, I fold my ears in when they are cold, til they warm up. I have the perfect way I do it too. My husband has tried folding them in and can NEVER do it right, the bottom half of my ear always pops out when he does it. I have done this ever since I was little, and I'm assuming this weird quirk/habit started because I had tubes 3 times and always had ear pain. Can't believe I just shared that.....but I did, and I have a point.....I promise this is going somewhere!

As I was sitting here, perusing the internet, I realized, while doing another little one of my quirks.......that the numbness I have had for SO long, is completely gone!! When the heels of my feet are cold, (I must have a thing with making sure every ounce of my body stays warm....I'm seeing a pattern here!), I put that heel in between each of my toes on my other foot, til it warms up. Almost from the very first symptoms of numbness, I have been numb on both feet between my Big toe and my second. So, basically a full year now, I have had numbness between my toes. I assumed that was the permanent damage remaining from the first few lesions that attacked my spinal cord, and never expected to get that feeling back again.

How are my quirks proving to be little miracles in my life? I was told by my Neurologist that pregnancy is like the miracle drug for MS. He said that many MS patients feel the best they have ever felt while expecting. Don't get me wrong, I have been super sick, but I have realized just how good I feel MS wise lately and am so amazed!

What a miracle it is, that as Mother's we sacrifice our bodies, so to speak, to carry these special little beings. But for me now, it is not a sacrifice. What once was considered a huge, dangerous beast wreaking havoc on my body and left me questioning each day I woke up....."What will shut down, or go numb today?" is no match compared to the miracle growing inside me. My little one has not only brought major happiness to a family who has so longed to have another baby after a couple of losses, but it is my little cure. How incredible is that? I can't wait til our baby is here to hold, love, kiss, smother and to thank profusely for helping me to feel so good, and to help my body heal from the damage that has been done.

The only difference between being pregnant with and without MS for me so far has been the tired factor. I was always super tired during the first few months with my previous babies, but this time around......if given the chance, I could sleep all day. Everything I have read and stories I have watched of other MS patients told me to expect that. I just didn't think I would crave sleep as much as I have craved food! I also have some issues with realizing when I need to use the restroom. Rather than having a feeling, I just get pressure. (Aren't you glad I shared?I have promised to be open and honest in hopes of helping someone else going through this!)

I hear there is a higher chance of having a relapse after delivery, so I am preparing myself for the worst, that way I can be pleasantly surprised if that is not the case when this is all over. I haven't made it any secret that my first Neuro. told me to stop having a family and to start taking the MS meds. But, for anyone questioning having a baby after an MS diagnosis, I would give the same advice Dr. H, my Neurologist now, gave me. Don't let MS rule your life. Live your dreams, and if having a baby is part of those dreams......go for it!! I'm so glad I listened to that advice, because it gave me hope that life can be and IS still great, and can be all you ever hoped for, regardless if you have MS or not. It really has been so good for me so far, and I'm so happy we listened to him, our hearts and the Lord and moved forward with our dream of having another child.

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!

This little Blog of Mine......

.....has suffered lately, I know. Truth is, there isn't much to report. I have mentioned before what a huge rollercoaster ride it has been with this whole thing. Some days you're up, some days you're down. Sometimes, you don't know how long the span will be till you go back Up, or you go back Down. Funny thing is, today I was driving home from my Grandma's house and got to thinking how good I have felt lately. When I was expecting, even the short while that it was, I felt SO good. I actually felt, and have continued to feel since, the bottom of my feet touch the floor. Crazy how we take that feeling for granted. Pregnancy really is the miracle drug for this thing we call MS. If only I could bottle that up. Just think of the bazillion people in the world I could make extremely happy! Sometimes I feel like I'm holding the flower and instead of saying, "He loves me. He loves me not." I'm saying, "I have MS. I have not. I have MS. I have NOT!!" Today was one of those days. I found myself thinking, "How can I feel this good, and still have MS?" But, you never want those thoughts to linger too long, cause as soon as you think that, BAM! The roller coaster dips back down full speed and you find yourself numb from the waist down again. Either way, I'm thanking my lucky stars for feeling this good, for this long. That hasn't happened in quite a while. So just for today, I'm gonna pretend that the last petal ended on....."I HAVE NOT!"

Unlocking the Door to Heaven......

Sitting at the piano a few months ago, after the first diagnosis of MS had been given, thoughts of all we had been through in the last couple of years came to mind. I realized that through it all, blessings and comfort had been a part of it as well, lifting our spirits and seeing us through. I had learned so much about facing trials and relying on our Heavenly Father. Before I knew it, those thoughts formed words to a song and within just a few minutes, I had it written down. At the risk of looking like a total dork, I'm sharing this today.

There's a quiet peace that comes when I'm in need of comforting. A quiet peace that's felt when I'm on my knees in prayer. And I believe it comes from Thee, to strengthen and endure. And I believe, that's what peace is for.

There's an overwhelming love that comes, when I feel all alone. An overwhelming love that comes when I feel I can't go on. And I believe it comes from Thee to strengthen and endure. And I believe, that's what Love is for.

Father, I have felt Thee near me through my darkest hours on Earth. And I have felt Thee near me, when I'm questioning my worth. Father, I know that you're near me every step of every day. And I know that you will be there for whatever comes my way. Father, help me, to feel Thee now.

There's a joy that can't be felt unless we feel a little ache. But there is one who came and gave His life, for our pain to take. And I believe that He was sent, to help me find my way..... back to that Heavenly home from where I came. (Then back to the chorus)

So, at the time those words came, I didn't think much of it. It was fun to sit down to play and sing to myself and an empty room. However, this last week, those words took on a whole new meaning. After almost 2 years since our last loss, of trying for another little one, we finally found out we were expecting. We were thrilled! In the back of my mind however, I was scared. After a loss, it's hard to believe that it will ever truly happen again. I tried as hard as I could not to think about anything going wrong. I started looking for maternity clothes on line. Started looking at the baby isle when I'd go grocery shopping. I couldn't wait. We got in to my OB within a few days of finding out, so that we could make sure everything was ok MS wise, and baby wise. We were also needing to see him for the referral to see a Para-natalogist. My Doc. did an ultrasound last Monday and everything seemed to be headed in the right direction. Not much to see at almost 5 weeks, but what was there, was right on track. Our excitement quickly turned to fear the next day, when I started having some cramping followed by other things. I knew it wasn't good. I prayed and Trav gave me a blessing. Later, I called the Dr. and they said to just rest and try to relax. Some of these things were completely normal, but time would tell. By the next morning, things were really bad, so they got us right in. Another ultrasound confirmed that I was in the process of miscarrying this baby, and that there was a possibility it could be tubal. There was nothing they could do. During our last miscarriage and through all of the MS stuff, I truly felt close to my Father in Heaven. I have stood many times and testified that I know He lives, I know He knows and loves me personally. This time around, I have to admit, I had thoughts in my mind such as, "Why doesn't Heavenly Father love me right now?" "What am I doing wrong?" etc. I really struggled with some anger and frustration those first couple of days. One night, while Trav was out on Elder's Quorum visits, I sat back down at the piano. Without much thought, I began playing my song. This time, as I sang those words, I had a very peaceful feeling come over me. I realized that I was singing my Testimony and that that song had come at that time a few months ago, to bring comfort during this time now.

As conference came I hoped to hear words that would comfort and heal me. Funny thing is, the talks about trial or the Holy Ghost weren't the ones that had the effect. The one that hit home the hardest to me was President Monson's talk yesterday about a having heart full of Gratitude. He said something that hit me so hard, I hurried and wrote it down. He stated, "When we encounter challenges and problems in our lives, it's often difficult to focus on our blessings. However, if we dig deep enough, we will realize just how much we have been given......To live with Gratitude is to touch heaven....... When we give thanks, we unlock the door to Heaven. This in turn helps us feel our Heavenly Father's Love." I had hardened my heart in the last week by focusing on everything negative in my life, rather than focusing on the blessings Heavenly Father has given me. I can only hope He will forgive me and understand my heart.

I am Eternally grateful for my sweet husband, who also tried to help me see all of our blessings this last week. I never hear him complain any time we are dealing with a setback. He is the perfect example to me. I'm so grateful again, that he was there with me, to hold my hand and let me cry. I love him with all my heart and thank the Lord every day he's in my life.

My heart is full of gratitude today, but the list is longer than this already extremely long post. I'm so thankful the Lord saw fit to answer my prayer through our dear prophet and his great council to be mindful of the blessings we have. I only pray that as I try to do so, the doors to Heaven will be opened for me to feel my Heavenly Father's love as I try my hardest to learn from this trial and keep moving on. I truly have felt him there during my darkest hours, and I know that through prayer, He will be there for us through this.

Here Comes the Rain Again...

Usually when I wake up, my legs are pretty numb. Once I get up and start moving, it eases a little. The last few mornings I have noticed that as soon as I stand up out of bed, I have the craziest sensation that cool water is running down my legs. The funny thing is, I think it feels kindof awesome! Does that make me weird? (Cause it sure feels weird admitting it). Who knew MS could have some perks?! I guess I like it because it feels like it is releasing pressure from the numbness. Picture rubbing mentholatum on something chapped. That is the same relief I feel when this takes place. Not sure what's happening on the inside when it does, but I'm sure glad it is......weird or not!

Today From the Back Seat.....

Julia: "Oh No Mom! Shoot, I'm feelin' some numbness!"
Mom: "You are, where?"
Julia: "Just every where. I'm really numb!"

......and then my 3 yr. old giggled, and so did I.

Later, I prayed she never truly will.

"The Best Tunes are Played on the Oldest Fiddle"

I sure hope that's true! Because I feel like an old Fiddle lately! Have you ever watched Biggest Loser? You know when they take the people to the Hollywood Doc. that runs all the tests and tells them how old their body is vs. their real age because of their health? I'm afraid that if they start running tests like that for MS patients, my test would prove I should have a few grandkids and a plot purchased by now! All I did, besides my regular Mom duties this last week was go to Park City a couple of times, 2 football games and out to dinner with Trav's co-workers. By Sunday morning, I could hardly feel my legs. I walked like an old lady through the halls of church...... I was not sporting my cute Sunday Heels very well at all! Today, the television has babysat my little girl while I sit here with my legs propped up hoping to relieve some of the numbness. Sometimes I feel like such a slacker because I don't hardly do anything, yet, what little I do makes me look and feel like this:
On the bright side, it has been really nice to chill with my little Sis while listening to the rain outside our window. We'll have the glass-half-full kinda attitude today and be glad for the chance to relax. And maybe, I'll get a head start on knitting some cute sweaters for my grandkids!

"The Only Thing We Have to Fear is....."

....Fear Itself." Franklin D. Roosevelt

Lately I have let fear walk into my life and take over.
Today, I decided to knock it off it's pedal stool.

And....something as simple as a bike ride helped me do that.
I have been told conflicting things
during Neurology appointments.
On one hand, I have been told that
exercise does wonders with MS.
On the other, I have been told not to
over-exert and if I start to feel my
body temperature go up, or I start to break a sweat,
I need to stop.
Dang.....isn't that what exercise is for?

"You need to get serious with what's going on inside your body. You have lesions on your spinal chord. When over-exerting or raising your body temperature, you're just giving those lesions everything they need to cause more damage. It's serious enough it could cause paralysis."
- Dr. H
So, with all that info in the back of my mind, I had just decided that I couldn't exercise until the weather changed, or maybe it was just easier not to do it at all.

When Heidi called yesterday and said that the temperatures were dropping a little in the mornings and asked if I wanted to hook up the bike stroller and join her for a ride to the park, my first reaction was to say no. However, I said yes, and asked Trav to get everything hooked up for me.

Off we went, and even though my feet were a little numb to begin with and made it difficult to feel the pedal on my right side, it felt good to be out when the sun was up and getting some fresh air and exercise. We had a great time feeding the ducks and riding around.
So silly the little things I used to take for granted, now seem like major milestones.
Been home a couple hours now and so far so good.

"A mind focused on doubt and fear
cannot focus on the journey to victory."
- Mike Jones