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 !

Sunday, November 4, 2012

Music by My Husband!

A few months ago my husband, Casey, was given the opportunity to go to Nashville and record an album! He worked with 2 wonderful producers, Jay Speight and Tyrus Morgan. To prepare for the trip Casey, Jay and Tyrus held Skype meetings where they were able to write 2 out of the 3 songs; Merciful God and Trust in You. The third song, Before the Throne, is a powerful hymn with an updated feel. The cello part is played by Matt Butler of New Song!

So much time, effort and thought was put into these lyrics in hopes that it may bring others into a time of worship. I couldn't be any prouder of my husband! We serve a mighty God who gives us an abundance of mercy if we put our trust in Him! Check out these songs by clicking on this link: www.caseyhensley.net

Thursday, October 25, 2012

Just another update!

Yep, time certainly does go by fast and I'm sorry it has taken me so long to get back to my blog. The last several months have been filled some exciting moments so I guess I will rewind some. I did start on Rebif (an injection 3 times a week) at the beginning of August and I'm very thankful that the side effects have been much more manageable than I anticipated. Also, several months before I found out that I would have to stop my other medication (a simple little pill), Casey forced me to face my fears of shots by making me give him his allergy shots. What a blessing that turned out to be! Thanks honey! I've continued to have a few minor relapses, nothing disabling just bothersome. For those of you who have heard my story or know me personally, I coasted through my first 6 years of being diagnosed with only one relapse. The next 2 years followed with some major relapses followed by getting almost back to normal. So, I haven't experienced a period of time before where I keep having these small, but constant waves of MS issues for this length of time. At times I wonder what the future will hold with all the damage that has been done, but then I remind myself that it's not for me to worry about! I was fearfully and wonderfully made. My Creator didn't make a mistake when He gave me MS and "my flesh may fail, but my God, You never will." (Give Me Faith - what a powerful song.)

Another awesome thing that happened about 2 months ago is I retired from my job! Ok, so I'm a little young to retire, but I don't like to say I quit! :) Now, I have the best job ever which is being a full time mom! I absolutely love being with my kids and watching them grow up although its happening way too fast! Tyler turned 2, and Brooke recently turned 3!!!! I just love my babies so much!

The beginning of this month Casey and I had the opportunity to go to Greece on a mission trip. I think that is going to need its own post because there is just so much to say about it. We were truly blessed to be able to go while both set of grandparents were excited to keep the kids while we were gone.

So there, I think I've caught up! I will try not to wait so long to write again, especially about Greece. I hope you all have a wonderful and blessed day!

Monday, July 2, 2012

An Update!!!!!

I know it's been a long time since I've posted something. I actually wrote a post at the end of May with an update about being on Gilenya for a year, but I hit the wrong button when posting it and it all disappeared! I've decided not to use that program again! Anyway, this past May marked my one year anniversary of using Gilenya. I felt great and was confident that the results of my yearly MRI would back that up. However, that didn't happen. My doctor's nurse called me to break the news. The MRI showed 29 new lesions with some being active. (breathe) I know everyone reading this is saying the same thing I did and my husband and my doctor and my family....what happened??? All I can say is MS is weird. No one knows what happened. I even struggle writing this because I don't know what to say. I went through a lot of different emotions. I had spent the last couple of months encouraging others to find a treatment that worked for them just like I thought I had. I felt as though I failed although I did my part in taking the medicine. Quickly I felt as though I lost so much. No more talks. No more travel. I know it sounds silly, but no more taking a simple pill.

Give me patience to deal with my blessings.

A couple weeks before all of this I had a minor relapse. Short version - half of my tongue went numb and my taste buds were affected. Nothing tasted good, but I had a 3 day steroid treatment and recovered. Then... I had another relapse that I'm still dealing with now. I was writing some notes down late the other night in my big, girly handwriting when all of the sudden I couldn't write anymore. I could still somewhat grip the pen, but I couldn't move my hand to write. I've also been having pain and a tingling feeling in my arm. My doctor prescribed another dose of steroids (5 days). I definitely have a love-hate relationship with those things. I like that they get me better faster, but I don't like the way they make me feel. I'm hungry!!! :)

So, what treatment now? My doctor suggested starting Tysabri, but after my blood work came back positive for the JC virus, we crossed it off the list. He then suggested Rebif. I feel much more comfortable with that although it means taking shots again! And, 3 times a week! Yikes! I'm not sure when I will be starting it, but it should be real soon.

God has always been there in all those good times while having MS, so does all this mean He isn't anymore? No! He is always there and He will not give me more than I can handle.

fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand. Isaiah 41:10