Friday, May 25, 2018

The Language of Love

Last weekend, the world watched as American actress Meghan Markle married Prince Harry in a spectacle of immense grandeur. It was every girls dream, right? You get whisked away and marry your Prince Charming. It really was quite something to behold. Of course the Royal Family did it up right, and spared no expense in giving Harry and his bride to be every thing their hearts desired. I'm sure it was a dream some true for both of them.

              Prince Harry and his beautiful bride Meghan, May 19, 2018

Yes, it was a fairy tale wedding, but now it's over and the hard part comes, living up to those precious vows they took before millions.

Well. as we approach our 40th Wedding Anniversary tomorrow, May 26, 1978-2018, let me tell you a little about my life and my real life Prince Charming. He is an extraordinarily loyal and faithful man who has lived up to every vow he took all those years ago, even in the midst of extreme pressure, turmoil, sickness and heartache. 

                                                                Steve and I on our wedding day, May 26th, 1978

When you get married you never know what lies ahead and you never know if the person you marry will have the gumption to stay true to their vows. You pray they do, but you just really never know, especially in the world we live in right now. The world is a messy place and Satan is all around, just temping you to go the wrong way and make a wrong, unGodly decision.The Bible is clear in 
1 Peter 15:8 " Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour." 

So you enter into a new marriage with love and adoration. You could clearly see it in the faces of Meghan and Harry last weekend as they took their vows. It's so sweet to watch. But will it really last?

In those first years, I think all newly married couples are often overwhelmed with the love and devotion they feel for the person they just joined their lives with.

Everything is usually rosy in those early years, You can' get enough of each other both physically, mentally and emotionally. Often, children are born or adopted and they become another bond between the two of you. You get so much joy watching them grow and learning about the world. Your lives settle into a routine and you just go about things, enjoying the special moments and memories you are creating.  Everything is moving along as planned. You have such a wonderful life, it's hard to believe anything could ever disrupt it.

And then, just like that BAM!!!! One trip to the doctor can turn your world totally upside down. All "your" plans are suddenly thrown out the window and you find out very quickly who is really in charge of your life, and believe me, it ain't you! God is the one with the plan, only He knows the course of our lives.

That happened to me back in January 1998. After a month of every test known to man, and a brain biopsy (they thought I had brain cancer) I was finally diagnosed with a chronic debilitating illness, Multiple Sclerosis, that would change the course of my life and the life of my entire family. Looking back, I was overjoyed to learn I had MS because at one point I thought I had metastasized brain cancer.  I thought MS would be a cake walk. Shows you how much I knew. I had no idea of the challenges that would lie ahead.

I've often wondered why God allowed MS to take over my body. And yes, there have been days when I have even mistakenly thought God allowed this to happen to punish me somehow. But in retrospect, I repented of those thoughts, because I know a loving God wouldn't do that. We all have our cross to bear, that's just life. MS is just my cross.

Through the last 20 years since my diagnosis, thankfully, the Lord has used me to help others through my suffering. And really, after all, Jesus suffered tremendously during his time here on earth, why should any of us be spared?  Romans 5:3-5 reminds us "More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

Now, honestly, I gotta say, many days it's pretty hard to rejoice in my sufferings, but I do try to endure knowing that the Lord is producing strong character in me, and hopefully I am using it for His Glory. Everything the Lord does has a purpose and I know that. And I am confident that one day, I will know the full story of why I was chosen to carry this burden called Multiple Sclerosis. 

I knew nothing about MS or the impact it would have on me or my family when I was diagnosed over 20 years ago. Living with MS hasn't been easy for any of us. It is a progressive, debilitating, insidious disease that mows down everything in it's path. I can see why it has been nicknamed the MonSter. And for me, truth be told, it manifested itself in me becoming a complete control freak. Sad to say, but that is exactly what happened. Looking back, I'm not sure why I became that way, maybe it was because I felt other parts of my body and life were out of my control, and I needed to be in control of something. I wanted to take over the everything: our lives, the kids, my husband and everything else I could get my hands on. I know now that was a profound mistake. Our family is still reeling from my destructive behavior and the devastating effects of it. I will always regret my many mistakes. I thank the Lord we have a forgiving God and I married a forgiving husband. I wouldn't be standing here today without either of them.

But here's the amazing thing. When the pressure got turned up, when the teenager years hit and the house was in constant turmoil, even in the midst of my craziness, it would have been easy for my husband to walk away from all of us, to say, you deal with them and their rebellion, you deal with your illness. You want control of everything..... you've got it baby. I'm sick of it all. I'm out of here.

But, miraculously, and thankfully for me, he didn't. He put his head down and dug deep. He never gave up on them or on me. He has been an unbelievably faithful husband, father, lover, and best friend. 

Believe me, I know I gave him many reasons to walk away, but he never did. He stayed true to his vows. Thank God, he took them very seriously, and through the Grace of God, and with the prayers of many over the years, we are still together 40 years later. Now that is totally a God-Thing! 

That is the real language of love, to have the guts to be able to stay and fight when you want to throw your hands up and walk away. Getting married is the easy part, staying married through all the ups and downs that life throws at you, that is the hard part.

I am blessed to say we were able to stay in the game. It wasn't easy by any stretch of the imagination, but thank the Lord we were able to stay true to the vow that says "What God has brought together, let no man put asunder."

 Thank you Lord for my wonderful, loving, faithful, strong, funny, endearing husband. I thank you that he had the strength to stay with me through sickness and in health, and through all the turmoil of our lives. He is truly a gift from you. I only pray we can enjoy many, many more happy and less turbulent years together. 

Happy 40th Anniversary darling, I love you to the moon and back!

My verse from today is above in red.

My prayer for today:

Heavenly Father, 

Thank you, thank you for my wonderful, loving husband. I am so blessed that you put him in my path all those years ago. Thank you that he had the gumption to stay true to his vows. I am truly blessed.


Friday, March 30, 2018

It's not about the bunny....

Today I've been thinking about Easter and what is truly means to humanity. Easter, that wonderful time of year when spring occurs and flowers are blooming everywhere has nothing to do with a Easter Lilies, or bunnies or dyed Easter eggs or candy baskets or egg hunts, no matter what the secular world wants you to believe.

Easter has to do with one man, Jesus Christ, dying a brutal death of a cross for the sins of the world. He died, was buried and miraculously rose from the dead on the third day. And there in my friends, lies our hope. If we believe in Jesus, repent of our sins and and turn our lives over to him, we get a free pass into heaven. After we die, we can be sitting at the feet of Jesus. How glorious a thought is that?

God himself became flesh and bones so he could endure the pain and torture for all of us. He took the sins and burdens of mankind upon himself on that Cross and he did it willingly. He knew what his purpose was. It was so brutal and I'm sure he didn't want to do it, but he really never wavered. In the Garden of Gethsemane he prayed " “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” Matthew 26:39.

Garden at Gethesame where Jesus spent many hours in agonizing prayer prior to his Crucifixion
 (photos courtesy of my friend Mary Byerman)

So, why would God send his one and only son Jesus to this earth to die as an atonement for us and our sins? Because God loves us and God is Holy. Holy God cannot exist with sinful man. After the fall of man in the Garden of Eden, a price had to be paid to reconcile us back to our Holy God and that sacrifice was Jesus Christ dying on that Cross. He was made a sacrificial lamb to atone for our sins. His death was foretold in the Book of Isaiah "He was oppressed and afflicted, yet he did not open his mouth; he was led like a lamb to the slaughter, and as a sheep before its shearers is silent, so he did not open his mouth." Isaiah 53:7

                                                              Jesus died for you and me. 

In deeper reflection today I've been thinking about suffering in general. Why does the Lord allow suffering? You may suffer emotionally, mentally, or physically, or you may suffer through a terribly hard time in some period of your life. It's hard to know anyone who hasn't suffered at one time or another throughout the course of their lives. But often people suffer and then it's over for a while.

But for me and my suffering, it has just increased as time has gone by. Being an MS patient with a chronic debilitating, progressive disease, I can tell you that I have my daily challenges with suffering and it has increased as the disease has progressed. MS is definitely not a disease for the faint of heart.

I often wonder why God allowed this disease to overtake me? I was a healthy, vibrant, happy working woman, wife and mother of two young boys when I was stricken. Understandingly, I was searching for answers. I remember clearly my very wise Godly pastor at the time, Brent, telling me  "Nicki, God didn't bring this sickness on upon you, but if you let Him, he can use you through this illness to touch others and bring Glory to Him." Such a wise man! 

And I have tried to do just that. I have to admit as the years have gone by and my mobility has been severely challenged, it has been increasingly difficult. Not being able to drive for about 6 years now, being homebound is very challenging, but now with the invention of email, Facebook, Instagram and Twitter, you can reach people around the world you may not have been able to otherwise. Thank you Lord!!

Honestly I have to tell you that I often wonder why I'm still here. I've had many of my MS friends who have passed on, but still I remain. I am just trusting in God's plan, knowing that He knows what he's doing and he must have more work for me to do. I'll just keep plugging along, praising my Lord at every opportunity.

On really bad days, of which there have been quite a few of late, I just keep my eyes extra focused on the Lord. He is my strength. Any suffering I may endure pales in comparison to the suffering my Savior did on that Cross. One verse I cling to that helps me a lot is from James 1:12 " Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." So, I just keep on persevering, trusting in Him.

So my friends, Easter is definitely not about the bunny! It's about one man, Jesus Christ, who came here, lived a blameless life and died at the age of 33 from a brutal senseless death. And He did it for us. He came so that we may have what he has, Eternal life with God. 

He died such a horrible death on Good Friday, but oh friends, what a glory awaits on Resurrection Day! Happy Easter Everyone!

My verses for today are above in red.

My prayer for today:

Heavenly Father,

Thank you for your son, Thank you for his sacrifice, Where would we be if not for Jesus? He is our hope and light in this world. I pray that everyone that reads this blog might be touched and turn their lives over to you. Help open their eyes Lord to see Jesus for who he is and what he did for us.

Amen and Amen

Monday, March 12, 2018

Gone but never forgotten.....

This past week the world lost a woman I truly admired, Barbara Garcia. I owe her a lot, as do hundreds of other MS patients in the Tampa Bay area who were searching and searching for a way to improve their daily challenge of living with debilitating symptoms of Multiple Sclerosis.

Barbara with her beloved husband, Robert

Enter CCSVI, Chronic CerebroSpinal Venous Insufficiency. A venous angioplasty procedure discovered by Dr. Paulo Zamboni,whose own wife was suffering with MS. Dr. Zamboni believed that MS was not an auto-immune disease, but instead a problem with blood flow as it was first described when it was discovered in 1868 by French neurologist  Jean-Martin Charcot.

                                                                       Dr. Paulo Zamboni

Dr. Zamboni's discovery, after years of research, CCSVI, was first performed in the U.S. at Stanford University by Dr. Michael Dake. He was approached by a woman, Joan Beal, who was looking to help her own husband suffering with MS. Joan had done her research and she sought and located Dr. Dake

Dr. Dake agreed and did the procedure with some pretty remarkable results. Shortly thereafter Joan began a Facebook Page CCSVI in MS and the word began to spread around the world. Everyone began asking questions about what this new procedure was, how they could get it, and would and could it really help them too? There was HOPE in the MS world, something that is in short supply in the lives of people living with MS.

The social media giant Facebook was back in it's infancy back then, having only been around a few years, but when you have any news of something that can help people who live with this debilitating disease, news travels fast and let me tell you, it began spreading like wildfire.

I was learning about CCSVI on Facebook through Joan and began talking to people, new friends I met on Facebook. Meanwhile my friend Barb was hot on the trail too. She began searching doctors in the Tampa area that could perform this for her. I remember her telling me that she opened the phone book under interventional radiologists, said a prayer and her hand landed on Arslan. So, she contacted Dr. Bulent Arslan, an accomplished interventional radiologist practicing at Moffitt Cancer Center. She approached him and pleaded her case.

Dr. Arslan did his homework and decided to help Barb and in July 2010 she became the first person in the Tampa Bay area to have the CCSVI venous angioplasty procedure done. Others soon followed. I was patient #4 and others from around the country began flocking to him to try improve their lives. There were other interventional radiologists who began to get involved in the area too. It seemed to us MS patients, that this group of doctors seemed to be the most compassionate of professionals. They actually listened to you and empathized with your problems, something that is sometimes in short supply in the neurological community, at least from my perspective.

CCSVI was a hot topic in the MS community, at least in the tech savy MS community. You certainly weren't going to learn of this from your neurologist. They began to see the interventional radiologists as a bunch of cowboys lassoing their MS patients up and stealing them away. After all, MS is an auto-immune disease, as medical science redirected the disease in the 1950's. right? But for me, and for alot of others, MS seemed to be more of a vascular disease. I for one always had terrible circulation and bad varicose veins, so it made sense that proper blood flow was part of the problem.

And after I did months of research myself and learned about Dr. Arslan, when first CCSVI procedure was done in August 2010, I saw some pretty dramatic results as well. Gone were the bone-crushing, my head in a vice headaches that had plagued me for years. My fatigue level was dramatically reduced,. I used to have to lay down every few hours, but now I was able to have a life, being up and alert for 7-8 hrs at a time. My cognitive function was also dramatically improved. And also gone were those terrible burning ears which had also plagued for so many years. I felt exhilarated to say the least, something I hadn't felt in many, many years.

When Dr. Arslan told me that my jugular veins, the main drainage from my brain were both 70% blocked it made sense. While CCSVI never claimed to be a cure for MS, getting my blood flowing properly out of my brain certainly helped many of my worst MS symptoms.

I knew I had to do something to tell others about this remarkable procedure so I reached out to the CCSVI Alliance, a newly formed organization, whose main purpose was to educate others about CCSVI and it's relation to MS.

I began working with others in the Alliance, Joan Beal being one of the founders, along with Michelle Brown, the first one to have it done in NY and Sharon Richardson, another one of Dr. Dake's early patients.

With Dr. Arslan's full encouragesment, we decided to have an educational seminar and the first ever CCSVI Walk to spread the word. Barbara Garcia was one of our speakers at the well attended seminar telling others about her astounding results and how she was enjoying walking unaided for the first time in years.She said one of her biggest joys was being able to hold her granddaughter on her hip just like a normal healthy grandma. She was also able to travel overseas and enjoy her life like never before. What a blessings that was for her.

In conjunction with the educational seminar we held a fundraising walk called the CCSVI Walk n' Roll. It was held at Lettuce Lake Park in Tampa, with hundred of participants and interested parties. We were able to raise a ton of money for the CCSVI Alliance, which I was very happy about. Here are a couple of wonderful pics from the walk.

CCSVI Walk n'Roll, March 5, 2011 Tampa, Fl.
Me with Dr. Bulent Arslan and Barbara Garcia
CCSVI Walk, left to right, 
Susie Ulrey, Janet Grieco, me, Michelle Sciuto, Michelle Brown & Marsha Mays 

Latest Frontiers in hemodynamics,imaging and
treatment of obstructive venous disease by Dr. Paulo Zamboni

Several organizations were born from CCSVI., the ISNVD (International Society for NeuroVascular Diseases) was the most important. It is still very active today. There is still so much to learn about the vascular connection to multiple sclerosis. Actually, Dr. Zamboni has a new book out because he continues to learn more about MS and the venous/vascular system.

Many of us MS/CCSVIers were blessed to be able to attend one of the ISNVD conventions that was held in Orlando FlL back in 2012. I met new friends from around the country that had CCSVI done. We were a growing community and remain pretty close knit through social media. Even though now we are scattered across the country and even around the world, if and when new information becomes available, we all pass it along to help keep ourselves and other MS'ers informed.

Barb, Dr. Arslan and I at the ISNVD 2012

                                          Barb was so happy to meet Dr. Marion Simka from Poland.

Barbara with Dr. Zamboni at ISNVD 2012
The CCSVI craze has now passed. The neurological community fought hard against this simple vascular procedure that helped so many MS sufferers and sadly, in many ways they won this battle, but the research continues. Thousands of people all over the world had the procedure done, many with long lasting positive effects. Unfortunately, many had their MS symptoms return when their veins closed back up, but for those brief months or maybe years, they were free and were able to live life as an able-bodied person. They were able to experience life as a normal person, maybe if only for a brief while, but for me and for many others, it was worth everything.

So our sweet Barb has left this earth, and is now residing in heaven where she is no longer shackled by the MS that racked her earthly body for most of her life. I'm so saddened for her family, I know it is a tremendous loss. She was only 55 years old. She leaves behind a loving husband, her mother and two daughters and grandchildren. I'm also sorry for those of us who love her and were able to share this CCSVI experience with her. We'll miss being in touch with her. She was a fun gal.

A recent picture of Barb with her family

Yes, I am sad, BUT, and this is a big BUT, I am absolutely THRILLED for my friend. She is now dancing in heaven in front of Jesus, her Savior. For the Bible is very clear. In 2 Corinthians 5: it says "We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord."

Barb is now with Jesus! She is no longer in pain or in a wheelchair. All her body parts work perfectly again! She is brand new! I also know she is having the time of her life. Honestly, I have to admit, I'm a little jealous. But I know my time will come to meet my redeemer. Until then, I will carry on spreading the Word of God and trying to help those who are hurting in this world, because I know there are so many.

So farewell my very sweet friend. You may be gone from this earth, but you will never be forgotten.

My verse for today is above in red.

My prayer for today:

Dearest Heavenly Father,

Thank you for the life of my sweet friend, your servant Barbara Garcia. She was such a kind soul and her pioneering spirit helped so many suffering with MS. Thank you for her boldness to forge on and learn about CCSVI so she could share it with the world. Thank you for Dr. Zamboni and his discovery and for Dr. Arslan and so many other doctors who were willing to step out of the box to try something new to help those suffering. I will be forever grateful.