MS & I

Tuesday, December 31, 2013

bad news...yet good

As most of you know Jeff and I moved to Richfield (tiny town in the middle of nowhere) for a job transfer for Jeff. Believe it or not Gunnison (an even smaller city about 30min away from Richfield) has a SWAT team. Jeff is an officer on that team (you gotta get your start somewhere right?) Well as we tried to get settled in to this new life something disrupted us. Can you guess what it is? Yup, good MS decided to show it ugly face once again. 

While being pregnant I felt AMAZING, I mean MS did not even exist to me. My doctor did warn me that I could relapse 2-3 months after giving birth. I felt so good at the time I thought that it would never happen to me. Boy was I wrong!

 I spent 3 days in the hospital receiving treatment. Soon I was back on my monthly treatment Tysabri. but it turns out its going to be a long road before I feel "normal" again.

Due to my health conditions Jeff spoke to his Sergeant and he is now being relocated to the Draper SWAT team. So that I can be closer to medical treatment and to family members for help.

So the bad news... MS has returned with vengeance. Yet the good news... we are moving back to SLC!

Saturday, December 7, 2013

Myths and Misconceptions

I wanted to share this post by the I thought this was great information to share for those who don't understand this complex disease.

      although there is no cure for MS. there are effective treatments to battle the disease. I am currently  on A TON of oral medication that I take morning and night and then my main medication is Tysabri. Once a month I go to LDS hospital for a 2 hour infusion of the drug.
my daily dose of oral meds

     Research has shown that people with MS have healthy children and function well as parents and that children of parent with MS are happy and well adjusted. Pregnancy and childbirth do not make MS worse. 
while being pregnant I have never felt so dang good! No I never got sick, and never had to take any of my medication and felt that I walked better than ever.
the best day of my life. My great feeling of pregnancy health left when Sawyer was about 3 months old

      Although 7 out of 10 people with MS only have a mild-to-moderate disability and remain ambulatory. At some point they may require a walking aid. Such as a cane to help with balance, but the idea that everyone with MS is destined to be wheelchair-bound is false. I on the other hand seem to work backwards in a way. When I was released from the hospital after being diagnosed I was in a wheelchair and then graduated to a walker and then to a cane and now to nothing at all.

     None of today's disease-modifying treatment are 100% effective. Most will experience fewer exacerbations which may not be as severe, but relapses will still happen.

I did have a huge relapse when Sawyer was about 3 months old. I am now back on all of my medication and will get my first infusion of Tysabri this month. Because this relapsed was pretty bad my doctor sent me to the hospital for 3 days of steroid treatments.

     The fact is that the lifetime of a person with MS is just about as long as the lifespan of a person without the disease. Most people with MS die from the same health conditions that are the most common causes of death in people without MS.

Thursday, October 3, 2013

I haven't been "posting" anything about our little lady's condition because honestly I was a bit embarrassed. I was afraid that people would think that because of my MS I may have dropped her or something. That is not the case!

On the Day Sawyer was born, right away Jeff noticed there was something different about her left foot. After having a few different doctors look at it we took her to an orthopedic specialist at Primary Children's Hospital. At just a few days old we got the news that our little lady had a clubbed foot. 
before seeing the specialist the doctors were unsure if she would even need treatment and were hopeful that baby girl would grow out of it

Right when the orthopedic specialist saw her foot she began to put Sawyers first cast on. This was such a hard thing to go through even though it was something as silly as a cast, but in that moment I realized just how much I loved her and that if I could I would switch places with her in a heart beat.
We would find out that she would be needing 5 different cast over the next 5 weeks


We got to see her foot for the first time since getting her first cast. We were so pleased to see just how much process she had made!


Before getting her fifth cast on they had to cut her achilles tendon to fully "straighten" her foot out. We were not allowed in the room while they did the procedure. From what I heared she handled it very well...that night was a different story as the numbness wore off she started to feel the pain.

Today she got her final cast off! We were so excited for her to be "free" from the cast but we were soon to find out that her foot is so tender that the specialty shoes can cause a lot of pain for her.
it's been a long day for all of us and can only hope and pray that Sawyer will be able to adjust. 

She is so lucky to have her daddy to calm her down and that she is able to fall asleep while dealing with this change that she can't understand.

Sawyer will be wearing the brace for the next 3 months for 23 hours a day. After the 3 months she will then wear the brace every night until she is 3 years old.
We are so happy (yet sad) that we are able to get this taken care of at such a young age. The good news is that this will not stop her from crawling and walking when the time comes. And she will not even remember this ordeal when she gets older!

We are so proud of her and she has been an example of strength to us in so many ways.

Friday, September 20, 2013

Baby Girl...

and baby girl is here!! Yes it is true what people say about having a baby, this is the most profound perfect love that I have ever felt.
16 hours of labor is just so fun
Jeff was so excited to meet his little girl

Jeff got to deliver this baby girl!
baby girl came out a purple and blue due to the cord being around her neck

Jeff got her to "pink up" and she was then ready to meet her momma

we are so in love with our Sawyer LaRue she has brought so much joy into our lives and we are excited to see what the future holds for us! 

Sunday, April 28, 2013

something to live by...

I love this story so much, I just had to share it. I find so much truth in it. 

There were once two prisoners who shared a cell.

They were both serving long sentences and were unlikely to ever be released.

Every morning, the warden would check on their cell and he was always amazed by what he saw.

One of the prisoners, Bob, was perpetually miserable and dragged himself to his feet.

The other, Ricky, always had a smile on his face in the morning and he jumped out of bed with enthusiasm.

This puzzled the staff and many of the other prisoners for many months as they could understand why Bob was so unhappy, but not why Ricky was so positive about life.

One day, the local priest was visiting the prison and he too noticed the difference in attitude between the two men.

He asked Bob about his demeanour and he promptly responded, “How would you feel if you were trapped in this place with no chance of release?”

The priest thought that this was a reasonable response, so he went to Ricky to ask him about how he maintained his positive attitude.

Ricky responded, “You’re a priest, right?”

“Yes, I am.”

“And that means you have some sort of confidentiality thing that means you can’t tell anyone anything that I tell you.”

“Yes, that’s right.”

“Well,” began Ricky, pulling his chair closer to the clergyman, “I’ve been planning an escape ever since I got here.  I haven’t got it all worked out yet and it may take me a long time to accomplish, but every time I start to feel sorry for myself and my situation, I remember that I can choose to accept my fate or do something about it.  Everyone here seems to just accept their fate, but I refuse to.  I understand that I may seem crazy and I may never be able to achieve my goal of getting out, but while I have breath, I have hope and while I have hope, there’s always something that I can do to help make my situation better.”

The priest smiled and looked at the inmate with new respect.

And he went home with the understanding that many of the people he met on the outside were more trapped than Ricky.

I wrote this story as a reminder that no matter what your situation is, you have a choice.

If you don’t like how you’re living, you can feel miserable or you can do something about it.

You have a choice.

You have hope.

You can do it.

Monday, April 8, 2013

MS Backwards...

Well I like to think that the meaning of MS backwards would stand for something like SUPER MOM. Cheesy I know, but that’s what I am hoping for. Yes Jeff and I are expecting this August. I am now 21 weeks along and all though I wasn’t too happy about this to begin with this little girl is starting to grow on me… literally. Yes it is a GIRL. I can already tell that I have my work cut out for me. Jeff has been over the moon since this announcement and cannot wait to be the daddy of a princess.
Since in my mind MS backwards stands for Super Mom you might be wondering how my MS has been doing since this little girl entered my life/body. I can sum it up in one word… wonderful. When we found out that we were pregnant the first thing was to notify my MS doc of the good yet scary news. The first thing that I was told to do was to go off all of my MS medication immediately. That was in December, since then my MS has been totally under control, no complaints here.  It is a certain blessing that I am able to carry a healthy baby and that this baby is making me healthier at the same time.
I have been extremely lucky in the fact that I have not had to deal with morning sickness. I think I felt worse not being pregnant than I do now.  All of my doctor’s appointments are going great and the baby is healthy. I did go to my first MS appointment since being pregnant and I am doing fabulous!
I am so excited to meet this baby girl and only hope and pray that my health stays on a steady course so that I am able to raise her and be a super mom. 
WOW I am going to be a mom...