Jesus can help you with the Faux Pas of life with MS

We all have disappointments or crash and burns, faux pas, lemons, calamities or whatever you call them because they are part of life. They can be an overwhelming and extremely challenging if you are living with a chronic disease like MS. We endure enough of a roller coaster ride living with this disease and not knowing each day when we wake up what we're gonna get. :(

How many of us with MS have tried the latest and greatest DMD's (disease modifying drugs) with the promise that they will really do the trick and slow down the monster MS, only to have an exacerbation shortly after? How about when you learn that the drug ( for me it was Avonex) that I took faithfully for years, has been found to do really do nothing to slow down the progression of my disease? Not that I was convinced it ever did.  link

But, then what? Just part of all the ups and downs of living with MS, right? But how can you deal with it?

And what about the mess with the wonder drug Tysabri? Oh, I remember the high hopes that were pinned on that newest of drugs in 2004. I bought into the hype, hook, line and sinker. I proceeded with caution, got all the necessary tests, signed all the papers and had my first infusion of Tysabri in spring of 2005 with absolutely astounding results. I felt better than I had in at least 5 years. I thought God has given me the cure I had been praying for! It was remarkable and it lasted 3 weeks, and I was ready for my next infusion, but there was a problem. It seems Tysabri had caused some deaths from a virus called PML and Biogen, the manufacturer, pulled it from the market. Time to crash and burn again. I was devastated. My dreams of feeling better and having a normal life were pulled right from underneath me. What the heck was God doing? This can't be right, can it?

Then the drug returned to market in 2006 and I tried to go on it again. I was tested for the antibodies to make sure I wasn't allergic and I wasn't. Off to the infusion center I happily went and they began the hour long infusion. Little did I know that even though I tested negative to being allergic, I lit up like a Christmas tree that day and I indeed was allergic and again my hopes of being living a more normal life with Tysabri were banished. It seems I'm written up in the medical journals for that one because NOBODY in the world has tested negative for antibodies with that drug and then been allergic. Go figure??

I have to say I was beginning to wonder what God was up to. Lord, I thought what the heck is going on? What are you trying to tell me? Any I doomed to never feel any better than I'm feeling right now. I knew that MS was a progressive disease, so maybe this was it for me, I was spiraling down and not headed back up.

I absolutely refused to believe that. I was trusting the Lord and He was going to come through for me. I absolutely knew this to be the truth. This verse came to mind many times during these waiting times. Isaiah 40:31 "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."

                            ©Dan Smith

I needed to trust in God and I did, but I admit I was getting discouraged. Here's another verse I turned to often from James 1:2-4: "Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing." Great joy from not getting what I wanted? Don't know about that one, but I persevered regardless.

I went back to my neurologist and then we began trying me on Rebif, another DMD, which didn't work: I got too sick, and then Copaxone, another DMD, which I remained on until I had another bad attack in the spring of 2009, so that wasn't working either. After that bad attack my neurologist put me on Avonex and Copaxone combination therapy. That was a real joy, let me tell you. It felt like I had run the gamut with the DMD's because I pretty much had.

I was so ready for something new, anything new and I continued to wait on the Lord and to pray. Then, while playing around on a new media site my son told me about called Facebook, I came across a page called CCSVI in Multiple Sclerosis. What was this? I wanted to know and I began investigating. I spent 3 months learning about CCSVI (Chronic Cerebrospinal Venous Insufficiency), and I felt as if the doors of Heaven were opening up for me again!

God had heard my many prayers and He was finding a new, different way to help me. It wasn't my way, it was His way. I really felt the Lord was telling me, "Don't worry about losing Tysabri, Nicki, I've got something better in mind for you and He absolutely did! I felt emboldened and empowered and excited about the future for the first time in a long, long time. Thank you Jesus

When I approached the idea of CCSVI with my neurologist shortly thereafter, he immediately thought it was another nutty thing I had found on the internet. When the doc, who I had been seeing for 12 years flat out told me "No, I do not want you pursuing CCSVI. That's just crazy. It could kill you!" Boy, that made me mad. How dare he tell me what I could and couldn't do. I dug in my heals.

Of course, thank the Lord, I had the perseverance to go right ahead and pursue the heck out of it, without his approval. I proceeded to learn everything I could about CCSVI over the course of the next 3 months and even found that it was being performed near me and they had done 3 of them to date! After much prayer and research I was ready for something that I knew was going to change my life forever. Turns out I did have CCSVI, a vascular condition, and that when I was operated on,  it to help clear up some of my MS symptoms. In many ways, CCSVI was the miracle I had been praying for and I still feel that way today.

I had my first treatment 8/19/2010 and it was without a doubt the BEST thing I have ever done to help my MS. Did it take all of my symptoms away? No. I had done my research. I went into the procedure with my eyes wide open, but in the back of my mind, I thought, could this be the cure I've been praying for so long? CCSVI it did take away some of my worst MS symptoms: my absolutely debilitating fatigue, balance issues and cog fog, but I wasn't dancing down the isles. My walking was better, but definitely not cured.

Almost 2 1/2 years later and 3 CCSVI treatments behind me I acknowledge now that the procedure is truly just another treatment for MS, although a highly effective one, and I am still living with the MonSter each day. Am I disappointed? Well, I wouldn't be human if I said I wasn't a little disappointed, but I also am thankful. Thankful to the Lord that CCSVI was discovered by Dr. Zamboni. Thankful that he pursued the vascular connection because he had a wife who was also suffering from MS. Totally a God-Thing as I like to call them~

The Bible tells us to be thankful and I believe that is the only way to handle disappointment. " Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:4-7

Not only did I have more healing from CCSVI  for my MS than any DMD I ever took, it also opened up a whole new world for me. I became involved with the CCSVI Alliance and am on their Patient Advisory Board, helping to teach others about this remarkable procedure that is changing so many lives for the better. That is something I could have never anticipated. I have made new friends all over the world, and even got to meet Dr. Zamboni himself and many of the doctors who are at the forefront of this new medical discovery. 

                                             Dr, Zamboni and I in Orlando last February at the ISNVD.

As usual, God always provides more than we could ever imagine if we trust and obey. Romans 8:28 is one of my favorite verses of all time: " And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

If you believe that verse, like I do, you realize that no matter what happens to you, it's all part of God's perfect plan for you and for the Universe. He is the one in control, not us. Trust and Obey, that's the only way to have peace in your life. If you do that, which is not always easy, you can handle anything that life throws at you, guaranteed! Take His Hand, He's waiting for you now and He will help you handle any Faux Pas that come your way ~~

My verses for today are above in red.

My prayer for today:

Dear Heavenly Father:

Disappointments are hard for everyone, but they can really be hard for those of us living with MS. Lord, help us to look to you when it seems that life is kicking us in the stomach because we don't know the master plan, but you do! Help us to trust and obey in all circumstances and leave the consequences to you. 

In Jesus Name I pray,
Amen

Each new day is a gift~

I was online a few days ago talking with a new MS friend who was discouraged. I asked her if she had had the CCSVI treatment? That opened up other questions from another new friend who asked me this pointed question about CCSVI~ How much of your life do you have back after the treatment?

That really made me start thinking about my life, or lack of it, (as some think), these days. After I had the first CCSVI surgery on August 19, 2010, my husband and I were elated. I felt better and was able to do simple things that I hadn't been able to do it a long time, like lift my right leg and put it into the car. I had more energy than I had felt in literally years. Placebo? My neurologist thought so, but I'm still feeling some of the positive effects of the procedure and it's been over 2 years now. I tried pretty much all the DMD drugs and still say that having my veins cleaned out was the best thing I ever did for my MS, hands down.

Fast forward 2 years. So, do I have some of my life back? This summer has been especially hard because I've had to endure alot of orthopedic problems and that has hit me hard. But I'm almost through them, and after my knee is done next week, I should be good to go after some PT.

But your life is always comparable to others, right? I have a friend down the street who is a paraplegic. He's hasn't gotten out of bed for almost 30 years. He gets up now and then and is able to get out, strapped into his chair, when he's up to it, but basically his life is laying in that bed, yet he's made a life for himself and has the most positive attitude I think I've seen. Life is what you make it, right?

As for me, I still can't drive, because of lack of feeling in my legs and hands. That means I'm a prisoner in my house most of the time. Sure, I get out now and then, I have friends that will come and collect me and take me places and my husband is always there taking me out to dinner, to the doctor, to church.

But I'm not able to just pick up like I used to do and get in the car and go anywhere I want to. There's no doubt about the fact that I miss those days. But you do get used to your "new normals" as I've heard it called. I'm definitely in the new normal stage of my life right now. I've learned why seniors try so hard to hang on to their drivers licenses when they get older. A car means independence, at least in this society we live in.

"Having my life back" to me would mean being like I was when I was still working 12 years ago, still active, working 40 hours or more a week, taking the stairs two at a time, going for walks during the lunch break, able to handle a full load at work and home, plus all the duties of a wife and mother of young sons. Still able to travel for work and leisure when needed with no problem. But, 12 years later, even without MS would I still be able to do most of those things? Probably, and if not all, most likely some?

Who knows, and does it even matter at this point? I've accepted my new life, and things are moving along, more slowly now, but they are moving.

The invention of social media like Facebook, Twitter, Linked In, and Pinterest have made a huge difference in the life of those who are homebound. I spend much of my posting, researching and spreading the news about issues that are important to me. I read, I write my blog, I "putse" around the house, I love to take pictures and organize them, I help out folding laundry, or doing the dishes, or whatever I can, I listen to music, I swim at least once, sometimes twice a day, I also use my Wii for exercise, I play with my two doggies and take Mollie for walks in my chair, I keep up with friends on the phone and I watch TV, mostly at night with my hubby.

                                                               Me with doggies Mollie and Buck this morning~

I am still living with secondary progressive MS and CCSVI. I have aches and pains everyday, all day. I have numbness all day, but I decide NOT to spend my time focusing on the bad. In looking around at how my life "used" to be compared to how it is now I realized that if I sat and thought about it I would definitely be depressed each day and not even want to get out of bed. But, that's not how I look at life. I look at the good in life. I am grateful each day when God opens my eyes. I realize I am here for a reason. I acknowledge that my life belong to Him, not to me, and I am here for His pleasure.

" For we are God’s handiwork, 

created in Christ Jesus to do good works, 

which God prepared in advance for us to do."

Ephesians 2: 10

When I acknowledged that fact, which I did many years ago, life takes on a whole new meaning and purpose. My days are spent trying to bring Glory to Him, through my words and actions. I wake up joyful and thankful for all He gives me. I take each new day with a mind to teach others about His truth and love. Whether it be helping others in love by teaching other MS patients learn how to improve their lives through CCSVI, or tweeting verses to encourage others, posting a picture with inspirational words, or spreading the word about my convictions about this election and voting for the candidate that most closely lines up with biblical values. To me, these are all things that help others and glorify Him.

I try vigilantly each day to speak His truth to the a hurting world. They are so many people confused, desperate and hurting; you never know how a word of encouragement may change that day for them. Many don't have the reassurance that I feel each day, they don't have that peace, and they can only get it from one place: Jesus Christ. "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:4-7.

                                                                         Prince of Peace© Greg Olsen 

I want my friends, my cyber friends and in person friends to see Jesus in me.I want them to see the peace that I have because of Him. I remember years ago when I went to see a neuro psychologist as part of an mental evaluation ordered by my neurologist, she said to me" You have this glow about you, this peace and calmness, it's quite evident. Are you a Christian?" I said as a matter of fact I am. Enough said. She knew where the peace came from because she knew Jesus too.

                                           It's true, if you profess to be a Christian. Some people will never enter

                                                      a church, they may only see Jesus' love by watching you!

So I ask you, do you have that peace in your life? Can you say that no matter what happens to you, you'll be at peace with the way things turn out. It's not easy by any stretch of the imagination, and can certainly be a tall order, especially in your own strength, but if you trust in the Lord, it's totally doable. He can give you that inner peace that only comes from Him. It will never come from anything that the world provides. You can chase your dreams and even fulfill them, but if you don't have Jesus, you will still have a longing that can't be satisfied by anything on earth. Turn to Him and He will show you what life is really about!

My verse for today is above in red.

My prayer for today:

Dearest Lord:

Thank you for my life. Thank you for the privilege of waking up each morning to serve you. Help me to treat others as you would have me and for my motives always to be to bring glory to you in everything I do. Thank you for the many blessings you give me and my family each day. Help me Lord to be able to reach out to others in Your Holy Name.

In Jesus name I pray,

Amen

Jesus, our comforter~~

If you are a fairly regular reader of my blog, you've probably been wondering where I've been for the past few months. I know I haven't written too often and I'm sorry about that, but there's a reason.

This whole year has been a tough one for me. It started out last December, losing my beloved Mom, then shortly followed up by my sweet Dad's passing only 2 months later. We closed up our home in the beautiful mountains of NC and put it up for sale, and starting and following through the summer, I've had orthopedic issues with my feet, back and now both knees. I'm heading in for arthroscopic knee surgery in a little over a week, hoping that will get me moving again.

Me and my multiple sclerosis have had a tough time dealing with the Florida heat probably because I'm just not used to it. This is the first summer I've spent the entire summer months down here, I'm used to spending a good deal of my summer months in the cool mountain air of NC. Physically it was tough to be in this heat, but emotionally it was wonderful because my husband and I re-connected after spending way too much time apart these past few years. Everything is a trade off, right?

I've also had some family challenges too. Add all that up and you can see that things have been a bit off kilter here at the Watts House for a while. When I take time to think back on what I've been through and my family has been through this year, it's no wonder I'm worn out.

But here's the thing: we all go through tough times! Every one of us faces challenges in our lives, it how we bare under the weight of those challenges that will make the difference in our lives. I'm sure we've all felt like we've carried the weight of the world on our shoulders from one time or another.

I have to admit, I've had real times of depression these past months, which isn't like me. It seems like when you roll from one crisis to another it can really take the wind out of your sails. I've found it's hard to regroup when you are done with one thing, and right behind it, there is another issue ready to take over and stay there for a long period of time. I've learned from my years of living with MS and the challenges of dealing with the ups and downs of a chronic disease, that the only place I can ever find solace is in the arms of the great comforter, Jesus, my savior. Matthew 11:28-30 says "“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

                                                  There is peace and comfort in the loving arms of Jesus Christ. 

What a wonderful promise that is from God's Holy Word. Oh, why do we not look to Him first when things go awry in our lives? Why do we think we can ever handle our troubles in our own strength? We simply are not equipped to do it. That is NOT the way God made us. He wants us to draw close to Him. He's waiting with open arms to comfort us in our times of need. But, how many of us turn away and run to other things to help us deal with the crisis' in our life: drugs, alcohol, food, TV, sports,  shopping, and all kinds of other idolatry. We will do anything but go to the one who can and will help us! Why are we so stubborn? It's our human condition I guess..... it's called sin. We foolishly think we have a better idea, we have a better way and we've got it all figured out. WRONG! 

I'm just as stubborn as you are, I've just learned from years of experience that He is the only answer to any of my problems. Simple as that. Trials are just a part of life. We all have them and we ALL go through them. James 1:2-4 tells us about suffering: "Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing."

It's hard to think of trials as perfecting your faith, but that is exactly what they do if you will learn from them and grow in your faith from them. Your faith will grow through your suffering, and you can shine for Jesus and bring Him glory through your suffering. How do you do that? By taking the trial and leaning on God through prayer and reading His word during that time. Spend time with your Creator, seek His Face and He will lighten your load. Look for your answers not from yourself, but from the one who can really help. 1 Peter 1:7 says "These have come so that your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed."

The Comforter © Greg Olsen ~~

 I've felt like this young lady many times this year because I have been confined to bed because of

physical problems, yet I knew that Jesus was right there with me. He truly is the comforter for us all!

As you get through the trial through your complete devotion to God, praise Him and share with others how He delivered you from your pain and suffering. It's a win~win situation for both of you.Why not give it a try? You get the comfort, He gets the Glory! He will never let you down. He will always be by your side, no matter what. Jesus is the friend that never goes away. Your friends, your spouse, your parents, your children. even your grandchildren ~~ they will all let you down at one time or another because they are human beings, but the Creator of the Universe promises to never leave your side, EVER. Deuteronomy 3l: 8 tells us "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."

Believe that and your comfort will come full circle in the loving arms of Jesus Christ. 

My verses for today are above in red.

My prayer for today:

Dearest Heavenly Father:

We don't know the ways of Providence. We don't know why we go through the trials of life or what purpose they serve for us, but you do. Help us Lord, to always turn to you when we face difficulties in our lives. Help us to seek your face and not to lean on our own understanding because we don't know what's best for us, YOU DO!

Forgive me Lord for times this past year when I haven't turned to you, when I've tried to figure it out on my own. Thank you that I can come to you in all circumstances and for all things. Thank you for your unending love.

In Jesus Name I pray,

Amen