"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

Getting Down and Personal.....

Funny how on this little blog I never hesitate to post when I'm happy, or when I feel good, or when something comical takes place because of this disease. But, for some reason, when it comes to posting the hard things, or the more personal issues I face with this, I second guess making a post. I talk myself into it, then out of it, into it, then out of it. I guess I never want to appear like I'm whining, complaining or being a baby about the whole thing. I know first hand, that there are definitely a lot of things harder in this life than living with MS. However, the whole reason I felt inspired to start this blog was to share everything about just that......living with MS. When I was first diagnosed back in March, I came right home and searched the web over hoping to find someone to relate to, rather than just info about Multiple Sclerosis. I wanted to see people. Pictures. Faces. I guess I was hoping to see that they were fine and living a normal life, as much as possible. I wanted to read their stories. How they found out they had it. What shots they were taking. If they had children with the disease. I wanted to know what life was like for them since the diagnosis. I searched, only to come up short. There are hundreds of sites that will give you all the info you can digest about MS. But, very few had real stories. So, with that in mind, I will share with you the latest in my journey, in hopes that it finds its way to someone else searching for the same help.

I am so glad I published the last post about finally feeling close to 100% healthy again, and being grateful for it. Because, I am quickly realizing those days are far and few in between. Yes, I look ok, nothing real physically noticeable. But on most given days, something is going on inside that is not visible. Since my last post, I have had a couple of days with tingling sensations in my arms. I had a horrible migraine accompanied with nausea on Saturday night. I was in Kaysville at the time and couldn't even drive myself home. I ended up on my sweet Dad's sofa for 2 hours before I could get up and get home. It knocked me out. Is this MS related? Not sure. National MS website says the possibility of it is very high. Usually a sign that the body has over done it and needs to rest. So, I took Sunday off. Stayed in bed most the day. My little Tyler was worried about me. Trav said he came in crying while I was at my dad's wondering if I was ok. Sunday after church, he climbed up in bed with me and handed me a card. He had gone off, all to himself without any prodding from anyone else and wrote me the cutest little card. Truly heartfelt. It made my day. I'm sure my kids have many questions, but don't quite know how to ask. It's hard to know how much to share with them as well. They know I have MS and they also know and feel that it has changed the dynamics of our home a little.

He thinks I'm the best Mom in the world.
That made my heart smile.

Now, for the more Personal issue. The last couple of days, I have felt sure that I was coming down with a bladder infection. We women know exactly what they feel like and the symptoms that come with it. So, without going into further detail, I have been experiencing these symptoms and decided I should call my O.B. to get checked before it got worse. Before I did though, I called my MS confidant Anna and asked her if she has had many of these, and if our Dr. H. had anything to say about them in relation to our MS. She gave me some insight, but still thought I should call my Doc. too. (Thank you Anna for being there for me!) Long story short, I went in to my other hero Dr. H. (Whom, aside from my Heavenly Father and my husband, I give huge credit to for the fact that we even have children. But that's another post for another day and place!), gave the sample and waited. The nurse quietly turned around to Dr. H. and whispered, "Should I send it in for a culture? It came back negative for infection." Dr. H. then came over to me and asked what my symptoms were. As I described them he said they did match that of an infection, but that my results were negative. We then discussed how this could be part of the MS and that the connections aren't being made to completely release everything. There......that's about as personal as it gets! TMI, I'm sure. Anyway, feeling pretty silly for wasting everyone's time I got up to leave. He told me if it got worse I could call him, but he recommended calling Dr. H. my Neurologist. I loaded Julia and I into the car, got down the road and sobbed the rest of the way home. I was truly hoping to go there, find that I had an infection, grab the prescription and get on the road to recovery. Instead, I walked off with the realization that this is really happening. MS is in there reeking havoc all over the place and there's not much I can really do to stop it. There isn't a quick fix for this one. Heavenly Father was mindful of me today, and answered my prayer through my dear friend Heidi, who showed up with lunch for me and my little Sis. (And no, I'm not always praying that someone will show up with Chocolate Covered Cinnamon Bears or lunch! :) Just comfort!) Thank you Heidi, you cheered me up. That in the long run was better than any medication. I am feeling a little better tonight, so hopefully that is a good sign.

Hardest part of all of this is the unknown and figuring out how to listen to my body. I'm hoping within a couple of years, I'll have a good system down and can keep from experiencing some of these little things, just by being a pro. and knowing this new little partner of mine better. These early stages are the pits some days. Good night.....here's hoping for a better tomorrow!

If You're Happy and You Know It......

.......Write a Post! Just had to document that on August 7, 2010, I felt the best I have felt in the last 8 months! Not sure how many days there will be like this, so I thought I'd make sure that I showed some gratitude! I don't have any numbness today in my right foot, and down to only little patches of numbness on my left. Still a little numbness around my mid section and back, but even that is the best it has been! I have forgotten what it feels like to feel 100%. I'd say I'm about 96% right now! Very Grateful! I think I'll celebrate by going to Smith's on a Saturday night to buy groceries for the celebration of my Father's Birth tomorrow at my home! It's a good day! Julia's song is my Theme today! Sing it Sista!

(Please forgive the spotted mirror and
the bottle of bubble bath on the floor,
apparently someone didn't finish their job!)

Perspective

I have been asked a lot lately, how I am doing. Truth is, the last couple of days, I have felt pretty good, emotionally and physically. The initial sting when first getting the news, is never easy. Life feels like a heavy weight on those days. I think I have been riding the wave of denial for a few months now. When I was first told MS back in March, I was shocked, but somewhat unbelieving. In the back of my mind, I truly felt like this couldn't really be happening to me, and that down the road, we'd find out it was all a mis-diagnosis. So, when Dr. H. gave us a glimmer of hope with the whole ADEM thing, it just made sense that's what it would be. Until the numbness after my fall, I had never had any symptoms. Having ADEM would seem the most logical where I had had the H1N1 shot in late November and was sick from then til Feb. with a horrible cold. To hear the news on Wednesday that I had more lesions, and more areas of concern with change, was devastating. Hard pill to swallow. No one wants to hear that they have a chronic disease that may alter their life on a daily basis. The unknown of MS is the most frightening thing. One day I could be me, and the next, someone I don't recognize. However, I had a conversation via texting with one of my dear friends the afternoon I had found out. Ironically, I was at the mall finding me a new outfit to make myself feel better! (Why do we do that? Not sure, but for some crazy reason, it did help!) Anyway, she sent me a text telling me how sorry she was that I had to go through this and that she felt bad for feeling sorry for herself for the trials she has had......feeling that hearing about mine, made hers seem irrelevant. Funny thing is, I have felt silly for complaining to her about mine, because hers seem far worse than having a little numbness and a diagnosis of MS. We kept texting back and forth, all the while I was in the dressing room of Aeropostale trying to fit into teenage-sized T-shirts! (That WASN'T making me feel better!) I kept thinking over and over about this friend of mine and all that she has had to endure - losing 6 pregnancies, family trials, financial frustrations, etc. I realized how much I admire and look up to her and how much I have learned from her example through it all. I am blown away at all she has had to go through. I don't think I could have endured what she has had to endure, and I definitely know, I could not have endured it as well as she has. As I left the mall and rounded the corner of the street, I came upon a UTA bus that was parked at one of it's stops. I witnessed the bus driver, lifting a man in a wheelchair into the bus. As I looked closer, I saw the man had lost both of his legs from the knee down. My heart ached for that man. Here I was, feeling so sorry for myself because I had just been handed a life with Multiple Sclerosis. The thing is, while that's hard, at that point in time, I had both my legs. I was walking the mall. I could drive myself back home. This man had to have assistance just to get on the bus for a ride somewhere. It was all put into perspective for me, right then and there. I drove home thinking of my friends who have lost children. Friends who have beat cancer. Friends who have lost a spouse. Friends who have children with disabilities. If all trials were set on a table, I think I would still choose my own. Regardless of our situations, none of us are exempt from trial. That is why we are here - to learn and grow and to prove ourselves worthy of our Father's Home on high. I had lost sight of that for the last little bit. I was grateful for the reminder that day, that very day that the news came in. Heavenly Father knows me, loves me, and is there for me, no matter what I am asked to over come. I can do this thing. I can host this disease. I can beat it. I know I can, with the help of my Heavenly Father and with the help of all of you who love and support me. Don't get me wrong, tomorrow I could be mad and scared again. But that's life, isn't it? We have ups and downs along the way. I am headed for many I am sure. But for now, while everyone is asking how I am doing......my perspective is.....I am ok. This is ok. All will be well.