Wednesday, March 21, 2012

When the MS MonSter comes calling ~ Do u Answer?

The past few weeks have been difficult and very emotional for me. My husband and I drove up to TN to be with my family and spread my Dad's ashes, only a few short months after we carried out the same exercise for my beloved Mom.

After 3 emotional days, off we went, dogs in tow, traveling to North Carolina to ready our mountain home to put it on the market after 6 years of ownership. We love the place, but it's just not reasonable for us to keep it because of the expense and mainly because of the logistics of where it's located. If it were 3 hours away, I know we'd find a way to make it work, but it's a good 11 hr drive. Too far, too long, too much at this point in our lives.

We bought the place to get me and my MS out of this Florida heat and for that, it has been a lifesaver. But, when we bought it, I was in much better shape than I am now. I was still walking with a cane, I was still driving and although I had severe cognitive problems and fatigue, I could still function in many areas.That was 6 years ago, and 6 years can make a big difference in the life of someone with a chronic and progressive disease like MS. So, sadly, I need to say goodbye to the mountain life I love so much.

View from the deck of our mountain home. 

                                                   That's our house up there surrounded by the fall foliage!

The next 9 days were spent spring cleaning and throwing out things. You know how when you get started with something, you just keep going and before you know it, it's taken over every minute of every day? That's how it was in NC. We got a lot accomplished that needed to be done, and felt a great sense of relief that it was finished, but we turned around, looked at each other and realized that our planned "relaxing week" had been MIA.

Then, back in the car, for another 12 hour trip home. I'm just beginning to come around and it's been 72 hours. I've spent the last 3 days in bed, barely able to navigate. My MS was telling me "don't forget about me, I'm still here and you have to deal with me."

"Yeah, Yeah, Yeah, I hear ya. I really don't want to listen to you, but you are forcing me to. But here's the thing, MS, - my God is bigger than you are. He is mightier than you are! You will NOT defeat me. That is a promise. I might be down, but I'm not broken--because I'm not relying on myself, I'm relying on my God!"

In hindsight, I needed the time to rest and recuperate after losing my parents. Their passing was only 69 days apart, and my near total collapse over the past few weeks after the event belied my emotions. I'm generally a very strong woman, but even I have to admit that dealing with their loss, all the travel, emotions,and working our butts off wasn't exactly the smartest thing to do. But sometimes you just have to do what you have to do, right?

The trip was exhausting for me and my husband. We've come to the conclusion that flying is the only way to go from now on if the two of us have to go together. Unfortunately, my MS has gotten to the point that it's just not reasonable to go any other way. Even flying is difficult for me, because of the walking that is required at the airport.I have a scooter, but right now, I only use it to take our little Mollie for walks. Can full time scooter use be far off? Yikes, I won't want to think about it, but my MS reality is beginning to stare me in the face.

Kinda like my MS/CCSVI friend Barb Garcia. She was the first person to have the CCSVI procedure done in June 2010 by Dr. Arslan. She had remarkable improvements, and just recently had her 4th CCSVI. But she, like me, has backslidden of late and is having trouble walking, and she had some other complications from her last surgery. She recently had a chair lift put on her stairs because after 24 years of living with MS, it was finally necessary. She was feeling defeated, but knows the reality of living with MS has finally set in, despite CCSVI. I told her to hang in there, hopefully, she will be climbing those stairs again soon, and I believe that with all my heart.

So many of you who know me are probably wondering how CCSVI and my results from it are fitting into my current state of mind, and why I might seem to be acting defeated by MS for the first time in many years?

First, don't worry, I'm not. I will never give up the fight against this disease that has taken over my body, piece by piece for the past 23 years.

I'm very appreciative of Dr. Zamboni and his discovery of CCSVI and I totally believe that the connection between CCSVI and many diseases will be confirmed in the coming days, months, and years. The wonderful and devoted physicians who make up the ISNVD (International Society of NeuroVascular Diseases) are committed to finding the answers. I was privileged to be able to meet many of them at their 2nd Annual Conference in Orlando last month.

These docs are unbelievably dedicated to finding the connection between CCSVI and MS, Alzheimers, Parkinsons, ALS and other neurological diseases. Their devotion is something I have never seen before in the medical community and I am so proud of all of them. I believe that many thousands of hurting and suffering patients will be helped by their efforts and for that, all of us should be so thankful.

CCSVI has helped me and it has relieved my chronic fatigue which totally debilitated me for many years. It has helped my balance and improved my cognitive abilities. But sadly, my walking is worse than ever. I will get back into PT soon and be in the pool within days and that should help, but for now, it's pretty bad. My head pain is back with a vengeance. My neuropathic pain remains and is continuing to worsen, but I am on the Wahls diet "Minding your Mitochondria" and am determined to build up my sensory nerves back to where they were 14 years ago when I was officially diagnosed with MS. That in hopes of improving my neuropathic pain.

But right now, I am reminded that CCSVI isn't a cure for MS, only a treatment. But for me, it has been a highly effective treatment, and for that I am praising God Almighty! I am also continuing to be totally resolute in my efforts to teach others with MS about CCSVI. I firmly believe if I had had this procedure done 10 years ago when I was on the other side of this disease, things might look totally different for me right now. I want to pass the good news of CCSVI along to others suffering with MS and other diseases.. There is new hope on the  horizon and it's here to stay. It's something called CCSVI and it's not going away. Sit up and pay attention neurologists, you've finally got some competition~

So, Yes, I still believe that CCSVI is a miracle from the Lord on High. A gift He sent down through one brilliant man and loving husband. A caring doctor named Paulo Zamboni.

Right now, I want to take the time to recuperate and rest. I will thank my Lord and Savior that I am still up and moving. I will count my blessings, not my troubles. I will look up, not in, for there is where my true help comes from. I will recite Psalm 121 today and everyday:

One thing I loved about my days on our mountain was feeling closer to God. It's easy when you are 4,000 ft above the ground among the clouds. I really enjoyed listening to my spiritual music and reading my bible while on the deck gazing out at his beautiful creation. Those days I will treasure forever~

                                          One of my favorite places, watching the sunrise on our mountain.

Psalm 121

A song of ascents.

 1 I lift up my eyes to the mountains—
   where does my help come from?
2 My help comes from the LORD,
   the Maker of heaven and earth.
 3 He will not let your foot slip—
   he who watches over you will not slumber;
4 indeed, he who watches over Israel
   will neither slumber nor sleep.
 5 The LORD watches over you—
   the LORD is your shade at your right hand;
6 the sun will not harm you by day,
   nor the moon by night.
 7 The LORD will keep you from all harm—
   he will watch over your life;
8 the LORD will watch over your coming and going
   both now and forevermore.

May the Lord watch over your comings and goings each day!

My verses for today are above in red. 

My prayer for today:

Dear Lord,

Thank you for the life of my parents. Thank you for what they have meant to our family over the years. Thank you for their Godly instruction.

Lord, I am weakened right now and I need you more than ever. I feel worn out and overwhelmed by many things. But I know, Lord, that YOU are my refuge and my strength. Help me to totally lean on your strength to get me through these difficult days. Encourage me Lord to move forward with my  life to do Your work so that I may bring Glory to you each and every day.

In Jesus Name I pray,
Amen and Amen

1 comment:

  1. No one can know about the actual thoughts of any person or Prohet, unless one has had a chance of personal interaction.
    We all tell these things based on our perception, our faith, our love or respect.
    It is something like a 'Poetry' written by some one but explained by others.


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