Saturday, May 14, 2011

Getting ready for CCSVI, round 2 - prayers needed!

So, it's a rainy Saturday afternoon/evening. Great time to write in my blog, don't you think? I just got up from laying down on my icepack for a headache. I lived on those ice packs to control my MS head pain for 13 years. They were the only thing that got me through the excruciating pain that felt like my head was in a vice all day long.

When I had my original CCSVI procedure last August, one of the first improvements was my head pain miraculously went away. I mean miracle time, it didn't lessen friends---it was GONE. That in itself was a profound miracle, and anyone who knows me can attest to that because my head pain put me down for the count, many, many times. But I also had other improvements from the first procedure. My extreme fatigue that so totally crippled me, was now also absent. I would have taken just those two improvements, but there were more. My right leg, which I hadn't been able to lift in about 3 years was now mobile again, and I also saw huge improvements in my cognitive function.

In many ways, I was reborn after my first angioplasty surgery! I felt so good, and was so energized, much more so than I had been in years, that I initiated and took on the task of working in tandem with the CCSVI Alliance in a big educational and Inaugural Walk-n-Roll weekend in Tampa, March 4th and 5th.

It was a monumental assignment, but I dug in my heals, and along with Michelle Brown of the Alliance, we pulled together a phenomenal event educational seminar and auction at Moffitt Cancer Center and Inaugural Walk-n-Roll at beautiful Lettuce Lake Park. The weekend was a smashing success. We had many MS patients who attended. They were intrigued and captivated by the CCSVI patients who spoke along with the 4 doctors, 2 IRs and 2 neurologists, who came to educate and share their knowledge of what CCSVI in MS means. It was a wonderful 2 days of everything CCSVI, and many people learned and were excited about telling others about what CCSVI can do to help others with MS. Mission Accomplished. Whew-----Relax Nicki.

It's been over 2 months since our event. Now, in hindsight, I admit that I probably should have taken those 5 months I poured myself (days and many nights) into organizing for others to learn about the benefits of this simple procedure and instead dedicated myself entirely to helping myself. But that's just me. That's just the way I am.

When I feel good, I like to do things for other people, that's just how God made me. And I felt SO GOOD after that August 19th surgery, I wanted to help the world learn about CCSVI and I was determined to do it. So I threw myself into making that weekend the absolute best that it could be, and I'm proud and happy to say that it was.

(I did devote myself to 3 months of physical therapy, after my first surgery, and it did help me tremendously, but admittedly I slacked off of it, after the holidays and as we rolled into the final phases of planning and pulling our event together, I was just too busy to work on "me." Not a good idea Nick - oh well what was I gonna do - I had commitments.)
 
Fast forward 9 months one day to May 20th, 2011. After conferring with Dr. Arslan over this past month about my growing list of symptoms that seem to have re-appeared, we have decided to go in for round 2 and I am ready. My headaches have returned, quite annoyingly. One thing I haven't had return is my fatigue - I am still going pretty strong, so that is a real blessing. My cognitive function could use alittle help of late and my walking is a bit off, although I can still lift my right leg so that is good. Just a little tune-up, that's what I need!

I've had 2 dopplar ultrasounds of my jugular veins in these past 9 months and they have shown the blood is still flowing correctly, but until Dr. A. gets in there and looks around he really won't know what's going on. So onward we go into the CCSVI frontier.

A few people have been surprised that I have to have this done again, thinking it was a one time procedure. Unfortunately, that is not the case. A few others are surprised that I am proceeding in without a battery of tests. The tests are just diagnostic and don't show much anyway. They aren't really necessary, especially if you've had it done before. I've had all the tests. I know I have CCSVI, now, let's go fix it!


I totally trust God Almighty and my talented and compassionate interventional radiologist, Dr. Arslan. They both know what they are doing and I couldn't be in better hands.


So, this coming Friday at 1 pm, if you get a minute, just please say a little prayer for me. Please pray for God's blessings on my surgery and for me to have the dramatic improvements I had the first time and even more so. That's what I'm praying for. I'm claiming another miracle, and I know that God will give me whatever He deems appropriate, just like last time.

Just like in Jesus time, the Lord is still performing miracles everyday, and I am wanting to claim miracle #2!

My verse is about Jesus healing in Matthew 4:23

"Jesus went throughout Galilee, teaching in their synagogues, preaching the good news of the Kingdom, and healing every disease and sickness among the people."

My prayer for today:

Dearest Heavenly Father, Almighty God:

It's me again, coming to seek your blessings and healing upon me, one more time. Please guide Dr. Arslan through my surgery and help him to see what he needs to see, and fix what he needs to fix. Give him your wisdom. Watch over my nurses and techs and help them to be the best they can be.

Watch over my husband, as once again, he sees me through another health challenge. Give me the strength and stamina to use this procedure and re-energize my focus and my energy on getting well.

In Jesus Name I pray,
Amen and Amen



                                           Dr. Arslan and me, October 5th, 2010.






Wednesday, May 11, 2011

Live like you're dying, because you are...

There is a great song by Tim McGraw called "Live like you're dying." http://www.youtube.com/watch?v=XiOcW_YR1G8

I was reminded about it because it was posted last night by a facebook MS friend of mine, Renee McFerrin Brooks. And I thought, do I live like that? I want to.

Then I thought about the fragility of life. These past few weeks, when all the remembrances of 9/11 came up through Bin Laden's death, I started thinking about the almost 3,000 innocent Americans who woke up one morning, not knowing that it was their last day on earth.

We're all just a heartbeat away from eternity, as my dear friend Ron Watts likes to say. None of us knows if our current breath will be our last. So, in the light of that, I began to think about the choices I make each day about how to live my brief time here on planet Earth!

Do I feel cursed because I have to live with MS, or do I feel blessed? Do I wake up each day with a smile or a growl?  I had the CCSVI procedure back in August and my MS symptoms were vastly improved by it. But, I still have MS and have to deal with all the ramifications that living with a chronic progressive disease implies. It's not going away. The damage from years of MS flare-ups, full blown attacks and all the numerous drugs have taken their toll. True, I do feel better, but I still have to deal with MS every minute of every day and lately some of the symptoms are coming back, so now, what do I do?What if I go back to the way I was before I had my CCSVI procedure. Can I be happy again having to live life like that again?

I wouldn't be honest if I said there weren't days when I didn't want to get up. Days when I haven't slept well because of pain, or things that were weighing heavily on my mind. But we all have those days, right? We just do it, we open our eyes and go. Some of the things that help me, are to say to God each day, "Thank you for opening my eyes up this morning, Lord. Help me to live this day for you. Help me to help others."

By and large, I've always been a pretty positive girl and I think my friends and family would concur with that.
I always try to look at the good in every situation and in every person, and overlook the bad. We are all on this journey together and we are all in different stages of growth and maturity. Where you are may not be where your husband is, or your parents are, or your kids, or your friends. But isn't that what's great about life? We all are right where God wants us to be and he wants us to help each other along the way.

For me, I think that my Creator wants me to live each day he gives with a thankful heart, so that is what I always strive to do. He wants me to be thankful for the many blessings that he has given me, in spite of my MS. Is it easy to live like that? Heck no it isn't, but it's the choice I make each day to try and encourage and help others along their way.  I try to pull myself out of my problems and think of others and their concerns.

It is my contention that God allows situations to happen to us, through us and around us for our spiritual growth. I also believe he wants people to see him, through us, but we have to slow down long enough to listen to him and let him lead us in and through those circumstances.

I've heard this statement at numerous bible studies over the years, "we are the hands and feet of Jesus Christ on this earth and that we may be the only " Jesus" that some people will ever know."

That is really a very powerful statement and quite something to try and live up to, don't you think? Trying to be like Jesus through our actions and words, is not an easy task by any means, especially for me. I'm a sinner and I'm human and I will never be anything like him, but still, that is what I try to do each day. I try to emulate the good in Jesus. I try to live like my next breath may drawn standing in front of God Almighty, because I don't know when that will be-- none of us do.

I want to be helpful, encouraging, appreciative, thankful and hopeful in the worse of conditions. I want to be the calm one in the middle of the storms of life. I want my friends and family to reach out to me in their times of need. I don't ever want to be judgmental of them or the messes they may have gotten themselves into because Jesus never was. Remember a few years ago when those popular bracelets were on a lot of people's wrists - WWJD? (What Would Jesus Do) Well, that how I try to live! I want people I know to look at me and say, "there's something different about her, what is it?" She tries to do what Jesus would have done!

I want to live my life with no regrets, and live each day as it if were my last, because you never know....it may be. 

My verse for today is from Ephesians 5:19-20

"Sing and make music in your heart to the Lord, always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ."

My prayer for today:

Dearest Heavenly Father:

Help me to be more like Jesus. Help me to try not be judgmental of others and their circumstances. Help me to reach out in love to others in Jesus name in every situation. Help me to live each day like it was my last, bringing glory to you along the way. Thank you for all my many blessings and please Lord, forgive me for all my sins.

In Jesus name I pray,
Amen