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

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 !

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!