"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

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.

The Wait is Over.....

.....And apparently, so is the hope of ADEM. Dr. H. called me a little while ago. Looking at my scans, he told me that it didn't appear to be so good. One of my lesions in the T-Spine had started to diminish, which would be a really awesome sign.....but the fact that I have another new lesion, that is rather big, is not. He feels that after reviewing the written reports and studying the MRI scans, my results and symptoms are more consistent with MS now. When I asked if that meant we were ruling out ADEM completely, he said, "No, nothing can really be ruled out completely. However, you are clinically doing better, and haven't had any more bouts of sickness or any new vaccinations, but you do have a new lesion. ADEM can come and go as well, but usually is accompanied by sickness/vaccinations. Since neither of those have taken place, it leads me to a more clinical diagnosis of MS." He did mention that my Brain is still free and clear of any lesions, which is wonderful at this point. The MS is contained in my spinal chord for now. I am grateful for that, I really am. Dr. H. is highly recommending we start the shots, but is also very supportive of our opinions and decisions at this time as well. He knows our desire for another baby. He supports that too. He still feels it could be as good for me as the shots for now. He told me to talk things over with Trav and decide if we want to start medicating me while trying for a baby. I can stay on the shots (if I take Copaxone) while pregnant, if I choose. Or, I can just wait til after a baby and then start the shots. Dr. H. offered to meet with me sooner than Nov. if we wanted to discuss more in detail with him now. He told me he was sorry to have to deliver that news, and was hoping for a better outcome for me. Of course, the tears started coming and so, I ended the conversation rather quickly. So much to process. So much to think over. I feel like I'm hearing this diagnosis for the first time again. Why is this so hard for me to deal with? I wish I could say I was handling it with grace, and taking it like a champ. But all I want to do is hide in my own little corner and cry. Maybe scream. Maybe even hit something. After 7 months of the if's, and's, why's and all the testing.....I'm tired and overwhelmed by the responsibility of carrying around this disease. I just looked up information about Copaxone. The side effects go on for a couple of pages. That in and of itself scares me, not to mention it can cost up to $24-37,000/yr. I don't feel comfy taking Tylenol when trying for, or expecting a baby, let alone a daily interferon shot. Sometimes, I wonder if we ought to give up the hope of another baby and that maybe this whole MS thing is our answer that it's best not to keep trying, seeing as it's been a year and a half since the loss of our baby. But I can't get rid of this feeling that it will happen, and I definitely can't deny the feeling I had as my Bishop and husband gave me a blessing. So, for now I will pray for the peace and comfort needed to move forward, and wait for my sweet hubby to get home. If anything, talking to him always makes me feel better. Besides, my amazing neighbor just showed up with some Chocolate Covered Cinnamon bears. Thank Heavens for those that listen to inspiration. You know who you are, and I thank you so much for following a prompting to come and visit me.....regardless of what you witnessed when you walked through the door! And, a huge shout out to my buddy Paige. Again, she helped me in the process of getting my results today.....love having her as my Neurology Body Guard! Thank you to all of you who have called, texted, etc. to check up on me. I know you have a lot better things you could be doing with your time than worrying about me and my issues, so I thank you from the bottom of my heart for your kindness, love and support. It means the world to me to know you care. I know this too shall pass with time, but in the words of Ingrid Michaelson, "I just wanna be ok today!"

Up and Down, and Up and Down, and Back again!

Just played "Eye of the Tiger" in my mind to gear myself up to call Dr. H's office. I don't know why I get so stinking scared to call. I hate to be the "Buggy" patient. But, on the same hand, they tell me to hurry up and get these MRI's done....which I do, and then no one ever calls to give the results.....so shouldn't I have the right to be a little "Buggy?" Maybe so, but none-the-less, I hate calling. The nurse checked to see the status of Dr. H. reading my results. I have told myself all along that either way, I have thought I was headed down the path of MS.....so the most that could happen would be to actually get good news that I wasn't. I've been trying to tell myself it's no big deal what we hear back. So, how come I am crying then, after getting off the phone with his office? I guess it's because I was secretly hoping when she got back on the phone she would say, "Looks great, the change is consistent with ADEM.....he will just see you back in November for a follow up." Instead, she said, "Looks like he really needs to see the discs from last time and this time so he can see for himself the change, and apparently there are new concerns in the C-Spine." I didn't love that answer. I kinda just want it all to go away. No more tests, no more results, no more waiting to hear! At this point, there is no other choice than to go shower and deliver my discs to the Doc.

P.S. Every bone in my body is screaming at me to try and be a little positive.....so, to leave on a good note......I truly do feel good lately. Down to just a few pockets of numbness on the bottom of my feet, and around my waist. Still have the creepy electrical feeling if I bump my thighs, but other than that.....I feel great. There definitely are blessings to be counted.

Patience Is A Virtue

Still just waiting. Never heard back from Dr. H. this week and he is not in the office on Friday's, so.....guess Monday is our new date of Hope! Thanks for checking in! Hopefully we will know more next week.

Made it to the Desk of Dr. H....

Just a quick update. I have been overwhelmed by the phone calls and messages wondering if I have any results. Thank you all for your love and support. At this time.....we are still just waiting. I received a disc with my images on them. From what we could tell, there wasn't anything different. However, on Saturday, I went and picked up my written report from Radiology. As we read it, there are areas of concern on my brain, but they were there last time and haven't changed from then til now. They didn't react to the dye, which is all positive as far as we are concerned. The final impression at the bottom of the report said that it was a stable MRI of the brain. So, that was very exciting and encouraging to us. We are wondering if the areas of concern on my brain have anything to do with the Concussion/Amnesia I had when I was 13. I'll have to bring that up with Dr. H. The C-Spine MRI looked ok to us too. Between all of the medical jargon it is hard to fully understand if I'm ok or not, but as far as our medical knowledge is taking us.....my neck appeared ok as well, minus a couple areas that sound like they are watching. The part that makes us a little nervous is the T-Spine MRI. That is where my current little lesion buddies reside. This latest test shows that my lesions are larger in size now, and reacted to the dye more this time around, and as far as we can tell, there are 2 more areas of concern there as well. Now, we just need Dr. H. to call and tell us if this is all consistent with ADEM or if it is more consistent with MS. Trav faxed my results to him yesterday. We didn't hear anything back, so I called today and left a message asking if they received my results and if Dr. H. had had time to look them over yet. The secretary called me later this afternoon and said that my results were now on his desk waiting for him to read and call me. Going to bed now, hoping that when I wake up.....answers will come in the form of a phone call from my favorite Neurologist! Thank you again for the love and concern. We truly appreciate it.

And the Results Are......

......Hurry up and wait!! I had the MRI tests today.....all 2 1/2 hours of them! That was pretty long to be in that thing! Glad that's over. I do have to say though.....I rock it in that thing! They kept telling me how good I was for being in there that long. I asked for a sucker.....don't have those. Asked for a sticker.....don't even have any of those! Dang....what am I paying them the big bucks for? Today no one wanted to share any info with me. Not sure if that is a sign that things don't look good, or if I'm totally reading into it. My little friend that assisted me.....who snuck me the info last time about my brain being clear, assisted me again today. There was another guy in there with her though, so maybe that is the reason she didn't share anything today. I don't know. However, they said my results would be read today and would get to my Dr. by next week. So, I called Dr. H's office on my way home and.....of course, he is not in the office on Friday. There is nothing worse than having your results held ransom! I hate that! I tried calling later this afternoon to Radiology to see if I could come pick up my written results, and they said it hadn't been read yet. I was hoping to know by whether or not they came and did the contrast, but either way, they had to put the dye in me in order to compare the lesions from last time. So, that wasn't any indicator. They told me to call back tomorrow and there might be a possibility of getting the results.....so we shall see. I have the scans on a disc, but I have no idea if there are lesions or not. Trav and I can't tell! Now, we wait. Thank you to all who have called and checked in on us. We are so appreciative! Keeping our fingers crossed, our arms folded and our knees bent!

Yay or Nay?.....That is the Question!!

Yesterday was my check-up with Dr. H. Trav and I left feeling pretty optimistic about things, but at the same time....a bit anxious. We discussed with him some of the symptoms I have had since the last time we met. After talking about each in detail, Dr. H. seemed very encouraged that the symptoms I have had, are all part of the demyelinating process I have experienced already, rather than anything new occurring. That was really good news for us, seeing as I have felt better in the last week, as far as my numbness is concerned, than I have in a really long time. Dr. H. examined me for a few minutes, checking my reflexes and shining bright lights into my eyes. After my examination, we talked about the fact that we don't have any baby news to report right now......and because we haven't had any luck in that department, it's time for me to go back in for more MRI tests. He was very direct and to the point from this time on in the appointment. He is still keeping the hope of ADEM (Acute Disseminating Encephalomyelitis) alive. He gave me the orders for a C-Spine, T-Spine and Brain MRI and asked that I get them done as soon as possible. Once the results are in, he will compare them to my previous ones 3 months ago. If there is no sign of change, (or if my lesions look like they have improved at all), then he will lean more towards ADEM, and we'll pray things continue to get better and go that direction. If there are any new lesions or signs of change in the existing ones, then ADEM can be ruled out completely, and a clinical diagnosis of MS will be more likely. We set up my return appointment with him the first week in Nov, unless things don't look good with the MRI, then I will see him sooner. We feel very fortunate that the symptoms I have had appear to be related to all that has already gone on. However, I am very anxious now for the MRI's. We stopped by Tanner Clinic on our way home and scheduled them for this Friday morning at 9. I will be in the machine for close to 2 hours while they run all three tests. I know the system a little better now, which is cause for a little more anxiety. I know that if at any point they come in and pull me out of the machine to administer the contrast dye, that things will not be in my favor. That will make for a very long two hours! But, I'm glad they could get me in so soon. Friday is our day.....we should know if this is a definite diagnosis or if I'm lucky enough to maybe escape this thing for the time being. I have kept a constant prayer in my heart since the appointment was made.

From the Mouth of Babes...

So, I'm upstairs folding the laundry, minding my own business....when the doorbell rings. Next thing I know the kids are running to see who it is. As I start to walk down the stairs to see for myself, I hear Tyler talking to his friend Sam. "Let me ask my Mom if I can play." As soon as Sam sees me, he says, "Hi, you might not want me to play here, I have a cold!" Before I could respond, Tyler looked at Sam while pointing at me and said, "Oh, don't worry, She has MS." Sam looked at Ty with a weird look on his face and asked, "What the heck is that?" To which Ty replied, "Oh, it's just a sickness in your back! Come on in, I can play!" They both ran off to the trampoline while I stood in the entry way laughing, trying to comprehend what just happened at my door way!! It was as though Ty thinks it can't get any worse than MS, so not matter what anyone else has.....come on in and play......just enter at your own risk! Pretty Funny stuff!

Come on....Just Twitch Already!!

Oh my goodness! Last night and all morning I have had a funny feeling in my right leg. I could swear it was going to twitch, and then nothing......again and again! It seems like it would just be easier to deal with a full twitch, rather than a half one!! I'm hoping it will just finally do it and end all this madness.....and take with it the strange sensation I'm feeling all over. Something is off today, not quite sure why or what! Dr. H......July 12th cant seem to come fast enough. We need to talk!

There are some perks to the job of carrying around this Disease however.....like having an excuse to buy a gigantic beach umbrella for the Syracuse Heritage Parade! I swear, the temp. dropped 20 degrees under that thing! If I didn't know any better, I'd say Trav enjoyed the "Perks" as much as I did! Happy Summer everyone! If you need me....I'll be home snuggled up to my A.C.!

Under the Covers!!

Who would have thought a little danger lingers there? The newest discovery in this whole process is a crazy one! I love, love, love wrapping up under my covers. I could stay wrapped up all night. However, over the last week or so, I have noticed that my legs become really numb half way through the night. I have wondered if it was the way I was laying or something. Since the beginning of this whole ordeal, in the back of my mind when Dr.'s or people would talk about the effects of heat with MS, I have to admit, I would secretly roll my eyes and think they were a titch off, mentally! :) I didn't understand or fully comprehend how much heat can cause problems. But the last couple of nights, as I would feel my legs get worse, I noticed if I pulled some of the covers off and laid outside of the sheets, my legs would change and become less numb. I guess in the long run, I was the one off, mentally!!! They were right. Heat really does make the situation worse. I have noticed in the shower as well, if the water is too warm, my feet can barely feel the floor of the shower by the time I am finished! Another love that might have to take a back seat......a hot bath or shower! No worries.....I'll still do the daily cleaning......just on the cooler side! :) So much for the 4th of July Parade in my sweater! (Don't believe me? Call my Sis.-in-law Ally.....it's her favorite story to tell!)

Hate is a strong word.....

Sometimes I feel like posting on this blog makes me sound like such a whiner! But....today, I don't care! Today, right now....this very moment....I HATE this disease. Today, it took something from me, and for that, I am angry. As I type, my sweet Young Women and all my dedicated leaders are on a bus, headed for the plains of Wyoming without me. I stood there, with a mind and heart physically able and ready to make the Trek, but a body (and a Dr.), denying me the opportunity. It is absolutely killing me to miss out on this. I hugged each of them as they loaded the bus, and couldn't keep the tears from coming. I cried the whole way home! Heck, I'm still wiping my cheeks. I know my life could be worse. I know that. But for today, and right now.....it is not so easy. Trek on my sweet girls! I'm there with you in Spirit, every step of the way!

Humor in ALL things!

So, I have the awesome blessing of serving in the YW's program. A few months ago, we started taking small groups of the girls for ice cream dates. We went on one this morning to get Frosty's at Wendy's. We had been sitting around the table talking and eating, when one of the girls sitting next to me accidentally dropped her napkin on the floor. We looked around under both our chairs and when we couldn't find it, I told her not to worry about it. We'd get it when we got up. All of the sudden, she busted out laughing and said, "It's in your shoe!" I looked down and sure enough....it was between my foot and my flip flop!! My foot was so numb, I couldn't feel it! We laughed at that one! If she hadn't said something, I would have walked right out there with it that way! At least I can provide some entertainment through all this! Pretty funny, if I do say so myself! Life is good!

Second Guessing

I am probably the worst patient in the world. Actually, on second thought.....I just might be the best!! I don't want to call the Dr., but probably should! I'm thinking maybe he ought to thank me that I haven't bugged him for every little thing! Since I'm not bugging him, I thought I'd better document the latest in case he needs to know when I go in to see him in July.

After I hiked Ensign Peak, I was very numb. I went home wondering if I really should have done it. It was so good for my spirits though, that I didn't really care. However, the next morning I woke up feeling better than I had in a couple weeks since all the numbness came back. We went on our family trip to see my Brother and his Fam in Oregon. I did pretty well there. Even walked quite a ways on the beach without too much problem. Had to walk arm-in-arm with my Bro. coming back from one of the waterfalls, but all in all.....I felt pretty good while we were gone.

It all started the morning after we got home. I tried to wake up and help the kids get off to school, but as soon as I rolled over, I was so dizzy. I couldn't do anything but lay there as still as I possibly could. With just me and my thoughts, I started to worry. "Does this mean it has made it to my brain?" Who knows. I second guess every little thing now. It may just be that I went on a busy weekend trip and drove forever the night before eating a lot of junk. I was dizzy most of the morning. I had to lay on the couch after getting myself downstairs to help feed Julia. The dizziness went away by mid-afternoon and all was well again. Til last night.

I went to bed feeling like my legs were on fire. It was the craziest sensation I have felt, aside from the numbness. I kept rubbing my thighs and knees, thinking that would help. Just made it worse. So, I curled up in a ball and went to bed.

This is such a strange, strange thing.....from one minute to the next. I pray this is all just part of these 3 lesions......not a whole bunch of new ones. Dr. H.....see you in July!

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.