Thursday, July 10, 2014

Not My Plan, but Yours

I just finished my 17th infusion and had my follow up appointment with my neurologist.  I had it all planned out.  I knew that I wanted to switch therapies no later than August 1 in order to have at least 4 1/2 months on a new therapy before I got a MRI.  After all my out-of-pocket was met with my insurance and I need to make sure I get that last MRI that's free to me.  I knew that 4 1/2 months would be an ok amount of time to see if the new therapy was working (no new lesions).  And, I was really hopeful to be on an oral therapy because 2 more have come out since Gilenya.  Wow, step back and look at how many times I said 'I'.  The Lord reminded me that I don't know best.  

The Lord created us with these amazing minds and wants us to be creative.  Dr. Lincoln told us (Casey went with me) about research that has been going on in the last year about the risks of developing PML while on Tysabri.  Remember from my last posts, if you have this JC virus then the chances of you getting this rare brain infection are greater than those that don't have it.  Also, if you do have the virus then your chances increase the longer you take it, especially when getting into the 18-24 month mark.  So what someone decided to research is, what if you have only a little bit of the virus in your system? Are the risks the same as those who have a lot of the virus?  What they found out is that the risks aren't the same!  How amazing is that?  I was blown away by what these researchers have come up with and all within this last year.  

Game plan.  Dr. Lincoln suggested that I do blood work to test how much of the virus is in my system.  If the results came back with a low amount, then I would continue through my 24th infusion before switching.  If the results came back with a high amount, then I would start Copaxone, an injection 3 times per week.  Yep, no pills.  He said the pills work differently than the injections.  The main thing is that the pills suppress your immune system so you still run a risk of developing PML even though you are off Tysabri!  Unfortunately, this has happened to some people.  Dr. Lincoln told me the blood work would take 2 weeks to come back.  So, I gave blood and walked away from my appointment with a much different plan of action than what I had in my head.  The Lord is working on me in trusting Him and not thinking that I've got this MS thing under control by myself.  

The result are in.  Yep, I have a high level of the virus and the nurse is in full swing of getting all the paperwork done for Copaxone.  That definitely was not what I wanted to hear.  I don't want to stop a therapy that has made me "normal" and feeling the best that I have in the last 11 years.  I have some concerns if this new therapy will be able to control my MS like Tysabri has.  I don't want to have another relapse.  I don't....  There it is again. I.  

Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him and He will make straight your paths. Proverbs 3:5-6

The Lord is still working on me to trust and believe in Him.  His grace is enough for me.  As I go through this next season,  I will remember how He has been with me through all the rough times and good times with MS.  

Thursday, June 26, 2014

Kale Smoothie

I'm not one to mix my food. In fact, everything on my plate has it's own spot and I don't like my food to touch. Yes, go ahead and make fun of me...everyone does! However, I love this kale smoothie! It's so refreshing and so good!

1/2 cup ice
1/2 cup water
1 1/2 cups vanilla Greek yogurt
2 tbsp honey
2 cups kale, chopped (stems removed)
2 cups frozen fruit (I use strawberries, mango, pineapple)

Add the ingredients in a blender, in the order listed. Blend until all the kale is in little pieces (barely seen).

I hope you enjoy it!

Friday, May 30, 2014

Time Flies By...

I've finished my 15th infusion of Tysabri!  I also had my last MRI about a month ago and I had NO new lesions AGAIN!  Wow, it's amazing to be able to say that!  The Lord is so good!  I'm still doing well with no prescription medicines and taking tons of vitamins!  In about 3 weeks, I have an appointment with my neurologist to discuss switching to a new medicine.  (I'm nearing that 18-month mark where the chances greatly increase for developing PML.)  We will see how that goes.  I really hope that he recommends one of the oral medicines because I dread going back on shots!  However, I will do whatever I have to do to keep my body healthy. This last year, since I've been feeling great, I have really been able to be the mom that I want to be.  I still remember those days when I was constantly on the couch while my two babies played together wishing I could find the energy to play with them.  Brooke is almost 5 now and Tyler 4.  They are growing way too fast and I don't have time for MS to keep me from enjoying my kids!

Tuesday, February 11, 2014

Pieces of Art

I'm so proud of my husband, Casey Hensley. He is a man who has made the choice to surrender his life to The Lord Jesus Christ and live for Him.  He was given the talent of music (singing, playing, directing, etc) and uses that to glorify the Lord. He recent released his first full album - Pieces of Art. The title track is a unique way of describing who we are in that we were formed by our Maker and in everything He is continuing to make us into a beautiful piece of art.  He uses the example of me having multiple sclerosis and that some might view that as being a broken artwork, but the Lord made if for good. It was no mistake.

Another song on the album is Lost No More.  It's Casey's testimony that he was once lost in this world, but has been found. Others might just be wandering in this world not knowing that they are lost, just living day to day, but there is hope in the One that made you! Money can't fix it, time won't heal it. Those are some of my favorite lines because that's what the world tells you and it's not true! It's in your weakness that you will find grace and be lost no more!

Fly is a song that Casey started writing when I was pregnant with our first child. He continued working on it when I was pregnant with our next child and finally finished it last year.  Fly is a lullaby with a beautiful melody that will touch your heart. The kids love hearing it and sometimes ask him to sing it so they will fall asleep.

There are more songs on the album and I love them all.  I hope you will check them out and see for yourself!

Casey Hensley - Pieces of Art

Sunday, February 2, 2014

MS150 Sponsor - Memorial Hermann

A couple of months ago I received an email from my neurologist.  (Note - I think it's pretty cool that my doctor is accessible not just at my appointments!). He told me that this year Memorial Hermann is sponsoring the BP MS150 and they are wanting some "patient success stories" to post on their website.  My neurologist was asked if he would recommend any of his patients and he thought of me! How neat is that?  So, I was interviewed about my life with MS and here is how it came out...I absolutely love the title!

Strong Will, Strong Faith - Stephanie's Story

In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith-more precious than gold that perishes though it is tested by fire-may be found to result in praise and glory and honor at the revelation of Jesus Christ.
1 Peter 1:6-7

Wednesday, January 29, 2014

An Amazing Story

I recently read a book, Kisses from Katie, that a friend of mine got me for Christmas.  It's about a high school girl that wanted to go on a mission trip.  After she did, her life was changed.  The Lord had put a great desire in her heart to go back for good to take care of the people of Uganda in their physical needs and more importantly, their spiritual needs. On a recent trip with my husband to Nashville, I got to see the area where she grew up.  The houses there aren't just big, they are huge! She talks a little about growing up in a wealthy family and I can definitely see that.  The most amazing thing about it is that she traded all the comforts of her life to live on a little cot just above the dirt floor with a mosquito net covering her bed.  The book details the events of her every day life.  It is incredible on what has changed in the villages of Uganda from one really young girl obeying her calling.  The book, her story, was such an encouragement to me in that whatever God calls you to do He will give you the ability to carry it out...in a big way!

Matthew 28:19-20

I highly suggest reading the book!!!

Thursday, January 16, 2014

Patience

Patience. What does that mean? If you asked my two kids they would say it means "waiting nicely".  That is what we have thought them.  But, how can they really know what patience looks like if I don't display it myself? I am often reminded that I can't just tell them, but in order for them to fully understand, they have to see me model it.

Yesterday, I went in for my Tysabri infusion.  The waiting room was packed and the line stretched to the door.  I arrived early (shocking, I know).  I continued to sit and sit and then sit even longer.  People continued to flood in making it impossible for the lady working the front desk to get anything else done.  I was then reminded, wait nicely.  So, after 40 minutes of waiting my name was called.  You would have thought I won something by how quickly I got up!

They took my vitals and sent me back to the chemo room.  This is where I get a lot of strange looks because everyone in there, for the most part, are getting chemo treatments and they are thinking "what is she doing here".  (I've been asked by several patients what kind of cancer I have knowing this is the chemo room.  One lady asked where I got my wig because it looked so real. :) )  Anyway, I sat down in a chair and soon after an elder lady sat next to me.  I got out stuff that I was going to work on for the next two hours waiting for the nurse to plug me up.  Wilma, the lady that sat next to me, started to make small talk.  For the next hour I learned that she is 86, has colon cancer, has 10 children and a gazillion grand and great grandchildren and so much more about her entire life.  Her husband died 24 years ago and some of her kids help take care of her while she lives in an apartment by herself.  I could go on and on to tell you about her.  When her IV was finished her daughter-in-law came to help her move into her wheelchair.  She held out her hand, not to shake mine, but for one of those hand squeezes.  I told her it was nice talking to her and her face was lit up.  I thought the moment was over, but as I tried to pull my hand away she just kept holding on.  It made me realize something.  Today wasn't about me getting my treatment, but about me giving an old lady some joy and just listening to her.  It started in the waiting room.  If I didn't "wait nicely" and got all frustrated that it was taking so long then I wouldn't have felt like talking and maybe not had the chance to sit by Wilma.  So, patience is waiting nicely, but also about not missing out on an opportunity to bless someone else.

May the God of endurance and encouragement grant you to live in such harmony with one another, in accord with Christ Jesus, that together you may with one voice glorify the God and Father of our Lord Jesus Christ.
 Romans 15:5-6

Thursday, January 2, 2014

Our Engagement Story

Every one loves a love story so I'll share mine...

July 1, 2008 I had just left work.  I was sitting in my car when my doctor called to give me the results from my MRI that I had a few days prior.  He told me I had 8 new lesions and some were active.  I was heartbroken.  It was the worst report I had up to that point and I knew it was my fault.  I struggled so much with not wanting to take my shots that I missed some.  Every week when it came time to take my medicine, I would tell myself that I really shouldn't take it because I had to wake up early the next morning and I didn't want to feel bad from the side effects.  Each week it was always something and I continued to fight myself.  I did take it, but only about 80% of the time was it on the day that I was supposed to take it.  For example, if Friday's were my shot day and I didn't take it until Sunday, then the next week when it got to Sunday I would make up another excuse and push it back til Tuesday.  So on and so on.  I knew that the inconsistency was a large reason for the number of lesions that had shown up on my report.

So, there I was sitting in my car crying when I got off the phone with my doctor.  I drove myself home and called Casey.  I didn't tell him anything, but that I needed to talk to him.  Later that night I drove over to his house and sat on the end of his bed.  I started trying to tell him about the conversation that I had with my doctor, but my words would barely come out. My tears were pouring down my cheeks as he held me trying to calm me down.  I eventually was able to get most of it out.  His response was everything I needed to hear; everything I wanted to hear.  He said things like, "I will always take care of you no matter where MS leads you" and "I love you".  In an effort to get me to finally smile he said, "even if you end up in a wheelchair I will push you around and make you do wheelies".  With that I was able to stop all my crying and I gave him a big hug.  He then told me to wait while he went to get me a tissue (I had mascara everywhere!).  A second later he came back and knelt down by my side.  He held out his hand, not with a tissue, but with a ring!  He asked me if I would marry him!  I was one of those girls who forgot to say "yes".  I was just so overwhelmed!

He later told me that he had been waiting for the perfect time and place to do that.  I know that night, in that moment, was the perfect way for us to become engaged.  He has definitely fulfilled his promises that he made to me that night and I know that he always will....

I love you, Casey, to the moon and back...

Friday, December 27, 2013

Rejoice!

Ok, so I've really let this whole blog thing go. I'm a numbers kind of a girl and not so great with writing.  However, I got the itch tonight to go back and read all my posts and felt it was time to write another. (I'm not promising when the next one will come!)

I think I left off when I was about to switch therapies again.  I've got some amazing news! It's really working!!! I feel great and my MRIs back me up!  In March 2013, I started Tysabri.  It's a once a month infusion that takes 2 hours.  It's not as easy as taking a pill, but I don't have to stick myself with a needle! It was not an easy decision to start this medicine. Casey and I prayed a lot before I began this treatment.  A little bit of background on this medicine and you will understand why.  Testing positive for something called the JC virus and taking this treatment increases your risk significantly of developing a rare, and fatal, brain infection.  So, yeah, I tested positive for that virus. My neurologist had lengthy conversations about what our next step would be since my previous treatment wasn't working so well and we agreed that this was the right thing to do.  To monitor not only my MS, but the development of this brain infection, I do a MRI every 3 months, instead of every 6 months or a year. So far I've been on Tysabri for 9 months. I absolutely feel normal! And not just my MS normal that I use to think was normal, but seriously normal! I don't even get so tired any more! Before I tell you about my last 3 MRI results, I need to say that for 9 years and 8 months of having MS, every single MRI came back with lesions.  Some were 2-3, 8, or 29, but ALWAYS something. (I really have to emphasize this point to make you understand my next statement.). So, the 3 MRIs that I've had since I've started Tysabri (one in June, September, and December) have all come back with NO NEW LESIONS!!!! Praise The Lord for He is good!!!

You know what, I think I'll just end there.  I can't write anything better than that!!!

(Please excuse all the exclamation marks throughout this post. However, they were necessary.)

Oh give thanks to the LORD, for he is good, for his steadfast love endures forever! Psalm 107:1

Wednesday, January 30, 2013

One day you develop a headache. Which medicine do you use? Tylenol? Excedrin? BC? Do you feel like one particular kind works better with different types of headaches? Well, just like pain relievers, there are now several treatment options available for MS. After my diagnosis, I immediately started Avonex. I don't remember a discussion on this with my doctor concerning my choices and even if I was given an option I was so overwhelmed at everything that I wouldn't have been able to choose. I continued for 8 years using this treatment (with the exception of my 2 pregnancies). After Gilenya came out, I immediately wanted to switch so I didn't have to take shots anymore. So after being on that for a year and getting the worst MRI report that I've had I then again had to change treatments. The difference this time was that I had to make a switch because my body didn't respond to the medicine not because I wanted a different way to take my medicine.

So when I have a headache, I usually reach for Excedrin. But, if that doesn't work I eventually try something else and the pain subsides. The difficult part of MS treatments is that if one doesn't work then yes, you can try another one, but in the time that you are waiting to see if it's going to help, damage could be happening.

For the last 7 months I've been using Rebif. Unfortunately, I've still been experiencing some flare ups. With that and the data from my last MRI, it is time, again, to switch treatments. It's really weird for me since I've never had to keep changing different treatments. However, I'm confident that one will work. It's just a matter of not giving up. So, Tysabri, here I come!

Rejoice in The Lord always and He will give you peace that will surpass all understanding. There's no pill out there that can do that for you !