Saturday, July 9, 2011

Really. Another pill, Lord? Life on LDN

Yesterday I started taking Low Dose Naltrexone (LDN) for help with my MS. For those of you who know nothing about it, join the club. I'm just beginning to learn about this new arsenal in my medicine cabinet for MS. It's a compound and naltrexone is used to help heron addicts recover. Low dose naltrexone is used for all kinds of auto immune diseases, and is used to treat cancer patients, HIV patients, and anyone with a nervous system disorder (MS falls into that category). The one great thing is it's not an injectible! Yippee for that!

Honestly, I thought my days of taking any new drugs for my MS were over since I had my first CCSVI procedure last August and then my 2nd one 2 months ago. But I was wrong. Seems like even with the blood flowing correctly in my body (probably for the first time in years) it's still not enough to stop the monster (MS) from rearing it's ugly head :(  Oh well. Here we go again. I'm up for it, bring it on Lord. I can take the heat.

Too much MS damage has already been done, I heard from my local Asheville neurologist, Dr. Armstrong. I knew he was right, but I still didn't want to hear what he was saying. It was like trying to swallow a bitter horse pill, and I just couldn't get it down without choking. "How about a course of steroids, " he suggested? OMG I turned that one down flat. Me and steroids have a long, nasty history. Really don't want to go there if I don't have to. OK, let's try the LDN.

But this can't be happening to me, can it? Aren't I supposed to be the "CCSVI posterchild" as my husband jokingly called me in the jubulient months after my first CCSVI procedure last August. I was conquering the world. I felt better than I had in years.

I was organizing a seminar and the first ever CCSVI Walk-n-Roll with the CCSVI Alliance. I was working hard to pull off a educational and fundraising weekend in March. Collaborating with my buddy Michelle Brown of the Alliance, we were really working round the clock and loving every minute of it. I hadn't been able to do that for years, since my retirement in 1990. It was exhilarating and so much fun. We were staying up and working late a lot of nights, via email and text. I was having a hard time believing I wasn't crashing and burning, but I wasn't. At least not yet.

I had begun to have a few returning MS symptoms in Feb and March, but was way to busy to think about it. I had mentioned it to Dr. Arslan, my Interventional Radiologist and we were in a waiting mode for CCSVI #2. I continued to go downhill and we decided to do #2 on May 20th. I had in fact, restenosed 50% and 60% percent in my jugulars.

I'm cleaned out now, but still not feeling as well as I was after the first CCSVI. What do I do now, I thought?

Up here in NC at our beautiful home in the mountains, I decided to go see Dr. Armstrong, my 3rd neurologist (yes, I have three!). He's a doctor I really admire and one who is open to all kinds of treatments for taming MS, including CCSVI. I'm his first and only patient to date to have it done, and he is tracking everything that happens with me. He was clearly disappointed that I was having problems, and agreed that trying LDN sounded like a good course to take - so here we are.

I took my first pill last night, and honestly I don't feel anything. I've read from posts on Facebook and emails I've received that it's a great drug and seems to do wonders for most people that take it. I'm still in a wait and see mode. I'm sure I have to get more of it into my system. But for now, everything is fine and I am thankful that I handled the first dose with no problem. I look forward to this drug being an A+ for me. That is my prayer, that God will use this drug to bring me back around, just as CCSVI did. I know the outcome is in His Hands, as always.

I'm resting, reading, and starting PT in a week.It's supposed to be cool up here, but it's warmer than it has been in years, that's probably part of my problem. But for now, I am going to look up, be positive and be thankful that I have another drug that may help me. That is an immense blessing and I haven't forgotten any of the blessings that He gives me everyday.

And, I have to admit, that even though I feel like screaming to the heavens "Why, Why, Why"? do I have to start taking yet another pill for MS, instead.... I am singing and Praising the Lord that I, in fact, am able to have access to another pill that might bring me MS relief.

Meanwhile, I'm in the "waiting on the Lord" mode again. I guess He wants me at the foot of the cross again, where I am most humble. OK, Nicki, quit your whining and get on with it :)

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

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

My prayer for today:

Lord, here I am. Yet again, asking for your healing upon my body. I'm worn out Lord. These past 6 months have been exhilarating and exhausting. I need you to refresh my soul and body, every inch of me. I know that YOU are my healer. Not the procedures, not the medicines, YOU. Have me take this time up here in these beautiful mountains to refresh my soul and spirit and rest my body. Lord, you take over everything, and bring me into accordance with your will for my life.

In Jesus Name I pray,

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