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

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!

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

Happy Mother's Day!

To all the mothers out there...Happy Mother's Day! I absolutely love being a mom! Brooke and Tyler are such great kids and them being so close in age has actually been a blessing. It's so neat to overhear them playing together. Brooke loves being a great big sister to Tyler, teaching him to say new words or how to do something. Tyler loves watching and learning from Brooke too. At times they can get on each other's nerve, but overall they act like best friends! What a blessing that is as a mother!

I'm loving watching them grow up and see their personalities come out. However, they are growing up too fast! Like Brooke says, "I get bigger, bigger, but I always be your baby!"

Gilenya Event - Dallas and Houston

Dallas

Last week I went to Dallas to participate at a Gilenya event at Pappasito’s!  To be honest, I was pretty excited about the food!  Anyway, there was a large party room set up, but only 3 guests showed up.  I had so much fun though!  I really enjoyed getting to know these people.  One lady that was there had been through it all – doctors, MS treatments, other prescriptions, relapses, etc.  She was a very intelligent woman with a crass attitude that kept us laughing.  She did most of the talking (with the exemption of the health care professional) and as the night progressed her vulnerability started showing.  She had this tough exterior, but she was searching for answers.  So many doctors were, in her opinion, just throwing medicine at her, but nothing was helping.  She was in constant pain and confined to getting around with the help of a walker and friends.  She told us about how she felt she had a pretty good first half of her life, but the second half was going downhill.  Please be in prayer for her with me that she give all of her pain to the ultimate healer – our Lord Jesus Christ.

Houston

Each event seems to be so different, yet I learn so much and walk away with such great memories.  A couple days ago, I walked into a room already filled with people with more trying to make their way in.  I was greeted by, of course, great Novartis reps.  Side note – I actually asked one Novartis rep at a previous meeting if they go through training on how to be so nice and caring to the people at the events. All that I’ve met have been that way.  J   I was so excited to see two of the same ladies that I had met at a previous event in Houston!  (Shout out to them cause I know at least one is going to read this!)  Then, I saw my doctor’s nurse walk in and it was her first time to be the speaker for the Gilenya program!  And then, I started looking around the room and saw some patients that I had met before, as well!  WOW, all of that was just so awesome!   I wish I could express how much fun I had, but you would get sick of me saying “and then.” I have a big smile on my face just writing this! 

 Well, another event in the memory bank and ready for the next one!

Gilenya Talk - Tulsa MS Walk

So, I wasn’t sure if I was going to make it to Tulsa for the MS Walk.  That Friday it was storming pretty bad here in Houston and United had to delay my flight over and over.  Almost an hour and a half after the original scheduled departure, I finally boarded the plane and I was on my way.  As soon as I landed, I hurried to find my driver because I was so ready to get to my hotel and relax!  The car ride wasn’t that long and I talked to my husband on the phone the whole way, not paying too much attention to start a conversation with my driver.  As soon as we got to the hotel, I got off the phone and thanked my driver.  He said he was sorry that we weren’t able to talk and as we were standing next to the car he asked me why I came to Tulsa.  I then went on to explain that I go to different events to speak about my experience with MS and taking Gilenya.  He then asked me a question that, to be honest, I wasn’t expecting.  “Do you know Jesus Christ as your Lord and Savior?”  I responded by saying “Yes!” and telling him that’s been my source of strength dealing with MS. We talked more about it for a few minutes and then he asked if he could pray for me.  So, right there he held out his hands and prayed for me.  Wow, I think it is so great that he uses opportunities to witness to all the people that he drives around.  What a lesson to be learned…

The next morning got off to a rough start.  I went downstairs to get a cup of hot chocolate from Starbucks (my favorite) and ended up dropping the whole cup as I tried to get back into my room!  Good news is that I was still wearing my casual clothes and not the ones I planned on wearing to the event.  Things got better especially since it was such a beautiful day!  There was a pretty good turnout for the MS Walk.  I really enjoyed standing at the booth and getting to talk to people who came over.  It’s always great to talk to others that have MS or know someone close to them who has it.  You instantly have a bond with these people and I love being able to be an encouragement to others.  One elderly lady walked up and started telling us how her daughter has MS and every year she makes 30-40 bands to hand out that go around your neck and keep you cool.  It’s just her way of helping others.  I also met the “one” that everyone talks about who had to get off Gilenya because her blood pressure would not come down.  She didn’t go into too much detail about her MS and I’m sure it’s because she has had to tell so many other people.  She has been on all the meds and nothing is really helping control her MS.  I’ll be praying for her.  Although many people came to the Gilenya booth, only 5 ended up staying for the presentation.  I totally understand since they came to do the walk and that’s great.  I enjoyed talking to those 5 people just as much as having little conversations with all the other people from the day.  Another successful event done and ready for the next one in Dallas!

Gilenya Event - San Antonio

Last week I was able to participate in another event in San Antonio.  We had a great turn out – about 20 people.  Again, I learned more from listening to Dr. Bass and the Novartis reps were so wonderful.  I so appreciate everyone that works so hard to put these events together and those there at the events.  I’ve found that they all love their jobs and have such enthusiasm for helping people who have MS. 

I will say that some of these events have been challenging for me, though.  I have had my ups and downs, but Jesus Christ has been my strength through it all.  For the most part, every time I’ve been down I have recovered to my old self…almost.  However, sometimes I feel guilty for talking about my supportive husband, my family who helps me even when I don't ask, and regaining the ability to walk again.  I'm so thankful for all those things, but meeting others with MS at these events has opened my eyes to what they have dealt with and some have not had that same experience.  My heart hurts for those people.  However, I’m excited to keep doing these events and encourage people to be strong!  I look forward to meeting more people and hope I run into those I’ve already met again someday!

MS Walk - Fort Worth

Today, Saturday, March 31 I had the chance to go to the MS Walk in Fort Worth with Casey at my side. I was really excited to be participating in another meeting about Gilenya, as well as witness thousands of people walking to raise money for MS. I was a little disappointed that we only had 3 people show up to the first talk, but those 3 were some of my favorite from all the talks I've done so far. After I told my story, one lady stood up and gave me a hug. That gesture meant even more to me knowing how hard it was for her to get up out of her chair and take a few steps without the help of her walker.

During the second talk I was a little worn out and I wish I would have done better communicating my story. However, afterward I was again able to talk to a few of the attendees. Hopefully, I was able to inspire them to talk to their doctor about switching therapies since they were struggling just like I was with my injections. Gilenya has certainly worked so well for me and I want it to do the same for others. As the data shows from the clinical trials, Gilenya has shown better results compared to Avonex and placebo. I know that this person, and others, who "accidentally" miss taking their shots and struggle with them so much. During those missed days of treatment my MS was still active and I ultimately suffered the consequences. Now, being On Gilenya, I don't have to worry about "shot day"! (Mia-if you are reading this I pray that you had the strength to do your shot tonight and hope that the side effects aren't so bad this time.)

My third talk down! San Antonio here I (and Casey and the kids) come!

MS walk - Ft.Worth Texas

Gilenya Talks - Iowa and Houston

The beginning of this month I had the opportunity to go to Des Moines, Iowa for my first Gilenya talk. I didn't know what to expect, but I was greeted by some great people who came to discuss Gilenya. Half of the attendees had MS and most of those people were already on Gilenya. I listened to the presentation and actually learned stuff myself! I wasn't thinking about how I was a patient too!  Afterwards, I was able to share my story with MS for the first time since my training in Atlanta. I thought it went well! Some of the people came up to me afterward and I enjoyed talking one on one with them. First one down!

This past weekend I had my second Gilenya talk, this time in Houston. I was so excited that my husband and parents were able to attend! I talk about my ups and downs and they have been there through it all.  Being able to "show them off" was such a joy to me. 

This time there were more than double the number of people than my first talk. The Novartis reps were so great, as well as the doctor. I really enjoyed working with them and hope to see them in the future. Like usual, meeting other people with MS is exciting for me since we have something in common. After meeting some people and them telling me they have MS, I actually responded "cool!". Thankfully, those people knew what I meant by that. Having MS is really not cool, but it's what has been given to me and I lean on Jesus Christ to deal with it. 

Headed to Fort Worth this weekend to do two talks at the National MS Society sponsored MS Walk!!!

Newpaper Article - 2006

This article was about my first MS150 back in 2006.

Atlanta...

What an awesome weekend! I came to Atlanta to learn how to share my story with MS, but I'm leaving with so much more. I spent the weekend with 11 other people with very different stories of being diagnosed and now living with MS. All I've ever known is my own story so to hear these other wonderful people was absolutely amazing. Some dealt with symptoms of MS long before they were diagnosed because they either didn't have time to stop their busy lives and get to a doctor or they blamed their symptoms on other things. Each one of us shared our story. In fact, we did it so much we could probably recite each others! Actually, that's not entirely true. Every time I told my story a little different. All of it was still true, but sometimes as I was talking, another part of my life would just come out of my mouth. For example, one time I just went off from my talking points to tell about my first MS150 experience. The adrenalin rush of turning the corner to the finish line, seeing people lining the streets shouting for you, as I wore a jersey that read, "I have MS. This is why I ride". What an amazing feeling of joy. Somehow all the pain from riding so far is gone and the sense of accomplishment fills you. The time I included that part, my speech went from just over ten minutes to fifteen!!! Oops! Sorry y'all!

This opportunity gave each of us a chance to relive everything we've been through. We each had a place in our story where we had a significant turning point. To hear those gave a sense of empowerment that we weren't going to let MS control us, but that we were going to control it.

Thank you to all my new friends from this weekend for sharing your story with me. Thank you to all of you who work everyday to put these kind of events together. We are all apart if the Gilenya family! (thanks Christina! I stole your line!)

Almost here...

It's Friday night and I can't believe in a week I will be in Atlanta! I've had a couple phone conversations and email correspondence to get me prepared for the speaker training. With every step I'm getting more and more excited! I'm so thankful for this amazing opportunity to learn how to effectively share my story and encourage others.

Another opportunity that I've been given is to speak at the Southern Baptist of Texas Convention in Austin the weekend after my Atlanta trip! My husband, Casey, has been involved with the SBTC for a little while, teaching music at various retreats. One day, his boss asked him if I would be interested teaching. Casey told me this and although I was nervous I said yes! How awesome is it that I've been asked to speak at the same conference?! I'll tell you....it's awesome!

I'm so blessed and can't wait for these new adventures! God, use me...

New Opportunities Are Knocking!

> Several months ago, soon after I started Gilenya, a nurse for my neurologist told me that there was a program for patients to possibly speak at events to discuss MS and being on Gilenya. I left my appointment thinking how cool it would be to do that. I thought about how it would go giving a speech all the way home. I was so excited! Well, fast forward a couple more months and I received a invitation in the mail from Gilenya to "share my story." I had an hour long phone interview and explained how my life has been for the last 8 years of having MS. It went so well! It's amazing to remember those hard times that I've had and how putting my faith in God has gotten me through a those times. Well, they contacted me 2 days later to ask me to go to Atlanta for speech training! They want me to speak at live events! So, next month I will attend this training to prepare me telling my story to other patients and anyone else that wants to listen. I'm super pumped and grateful for this exciting new adventure!!