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."
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
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 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 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
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
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