Been Running Fast and Free....

Where have I been? I must have been trying to forget about MS. Can't do that, though...go figure.

I'm okay. I am feeling good. I am trying to beat the feeling of MS by eating better and exercising. We're having a Biggest Loser Competition at work and, not expecting to win, I joined up. Really, I am not heavy, but I saw it as incentive to get on an exercise plan and firm up the middle. You see, I have this incline bench, kinda like the one that Chuck Norris pedals, but different. So, I hauled it out of my "Everything Room" and dusted it off. I knew if I left it in there, I wouldn't keep using it regularly. So, I plopped right in the middle of my living room and there it sits and calls to me every time I walk by. "Hello, Paul! Don't trip over me... why don't you stop and knock off a few curls, big boy!" it calls to me. Here it is almost midnight, and I'm sitting here sweating, typing, telling stories about my talking incline bench right after a workout.

Well, my strategy is working. I have been going at it for a good 8 weeks now. Now, I'll give you the straight scoop about my weight. Nothing to be ashamed about. Before I started, I weighed myself and I was 217 lbs. Now, this is before the Biggest Loser Competition started. I wasn't happy with that weight, so somehow I subconsciously lost 5 lbs before we started! So, I put myself at a pretty good disadvantage right at the start, because I only have so much weight I can lose. Did, I say I wasn't really serious about winning? To summarize, Week 1, I was 212.2. That's my official starting weight. This is Week 8 and I'm 205. That is a modest loss, certainly not award winning. But, if I could have held my 217 lb weight for Week 1, then we would be talking. The good news is I like it! I like the feeling of losing some stuff around the middle and I like the feeling that I am stronger at the same time. And, keep in mind, I'm 6'-3", so I'm almost getting hunky, if that is possible for me!

Okay, I'm alive, I'm okay, and I'm not as bad on the eyes as I used to be. I think I'll keep this up. I have lot's of reasons why, which I will write more about in the near future, now that I have found my blog again....wink!

Cheer Up, MS Has Me on My Birthday...

When I was told that I had MS...let's see who told me, I think it was my parents who told me, or the nurse...kind of foggy on that. I wasn't really expecting it. I was expecting news of a different sort. It could have been the doctor. Yes, it was probably the doctor. Or my parents. I guess it will remain a mystery.

Why can I not remember? Because I was in the hospital for a brain biopsy and being in a drug induced haze while losing a part of my gray matter might have had an effect on my memory? The doctors looked at my MRI and thought brain cancer. I had no fewer than three neurologists from three different institutions look at my MRI and they all said the same thing. You need a biopsy. None of them ever suggested MS and getting a spinal tap done. I call it a spinal tap. Neurologists like to call it a lumbar puncture...probably because of the negative connotation of saying - spinal tap, as if calling it a lumbar puncture is supposed to sound so innocuous and make you feel at ease about it. But, eventually I went through that procedure, too, and believe me, it is not pleasant, so spinal tap, it is.

So, back to the brain biopsy. I can always recount the details of my spinal tap some other day. The day of my brain biopsy was the first time someone suggested MS. It wasn't cancer. Yippee! It was only MS! So, instead of six months of rapidly declining health followed by certain death, I had an indeterminate amount of time to contemplate how it would all end as my health slowly but surely declined at a rate slightly quicker than old age.

So, today I write. Am I cheering you up any?

Today is my birthday and I will spend it by myself. I have no loved one in my life. I have a dog, who appreciates that I feed her and pet her and keep her warm at night. That is not wasted on me. But, I will go though this day and no one will give me a hug. A phone call will have to suffice.

Having MS has held me back. I am lacking the self-confidence to start a relationship with anyone. Not knowing if sometime in the next year I will become wheelchair bound is a hindrance to me. There are other reasons, too, but MS is such a convenient excuse for me. If I don't want to do something, anything, its the MS. I don't treat people badly, don't get me wrong. MS just makes it is just so easy to take the out.

So here I am, by myself. Me and my blog. Talking to talk. Writing to write. I suppose I could put on my happy face and tell you how nice the sun is this morning. But, I would by lying and what is the sense in writing in a blog if you aren't telling the truth? I could say its the MS and I wouldn't be fibbing at all, but surely that isn't everything. I'm feeling alone today. Its just me and my MS coming to you. I am such a liar!

Aren't you glad you stopped by?

Say Happy Birthday, Paul.....

Update on the Link Between CCSVI and Multiple Sclerosis

Tears are coming to my eyes as a write this. I don't know if it is the softening of my mental faculties due to MS, my own fragile emotions or a combination of all of the above; but, I just came from the National Multiple Sclerosis Society website and I am happy to report that someone has heard us! SOMEONE HAS HEARD US! And now, so much hope comes with it to all the people in the world diagnosed with MS!

February 9, 2010 - UPDATE: National MS Society leaders met with Dr. Zamboni today in advance of his invited lecture at New York University’s MS Center of Excellence. In meetings and during today’s presentation, Dr. Zamboni suggested that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that it is still not proven whether CCSVI is a cause of MS or possibly a product of MS. Dr. Zamboni also noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgery.

The Society shares in the public urgency to expeditiously advance any lead that has the potential of stopping, repairing or preventing MS.

Is there anything fun about changing health plans? NO!

Okay, let's cut right to the chase. I will leave out the names to protect the guilty. In December of last year, I received a notice from the insurance company that runs my company health plan. I received that notice BEFORE they notified my company! Seems they wanted to stop doing business in the state of Texas, which in itself is pretty astounding because Texas is probably weathering this international economic storm as well as any state. So, the powers that be at my company scrambled to find a replacement insurance health plan and they did quite well and come January 1, I was on a new health plan. I opted for the savings health plan, which has me donating each month toward a balance which is used toward my deductible when I require health services or a prescription. Sound familiar? Okay. So, in December we had an orientation meeting with the insurer and I discovered that Betaseron is not one of the prescription pharmaceuticals covered on the "approved list." So, I brought that up to the rep after the meeting and I was told not to worry, that she would look into it. About three weeks later, I still hadn't heard, so I make the call. She calls back a couple days later and guess what? Betaseron is approved and all I have to do is contact the mail order pharmacy to get the paperwork done. Let me give you the brief and almost unbelievable rundown on Betaseron. Betaseron is free! Normally it is no more than $50 per month, but effective last September, due to the economy, BetaPlus declared that Betaseron would be NO COST! As I just described it, would you say you understand what I am saying? Do I need to say anymore than that? Betaseron is no cost. That's right. You got it. Well, it wasn't so easy for the insurance company to understand. At first, I received a call from my doctor office and they said the the insurance company had denied the prescription for Betaseron. I say that's impossible because I did all the footwork up front. Well, a phone call to my insurance company rep was the next step. She said, no, you weren't denied. That's impossible. I give everyone each other's phone numbers; the insurance company, the pharmacy, the doctors office, and BetaPlus and I tell them to figure it out and call me when it is. Two weeks later, my insurance company rep calls and says, "I have good news, You are cleared for takeoff. And, the cost is $2,500 deductible and $50 per month!" I said, "No. Betaseron is no cost to me." She said, "No, your plan says $2,500/$50." So, I get my HR assistant involved and she says, "They're right. I can't help you." I said, "I know what's right and that isn't it. Thanks anyways." So the head HR person comes to my office. I give her the story and she says she understands that Betaseron is supposed to be no cost and she will try to help. I thanked her, because I was busy at work and didn't have time. By the end of the week, she emailed me with the message that she made no headway but she is working on it. After a couple sleepless nights on the weekend I figured out what I had to do. It was obvious to me that the insurance company was not hearing the message that BetaPlus said that Betaseron is no cost. I had to do something to kick the insurance company into gear. I had to hurt the insurance company where it hurt the most. Monday morning I called the insurance company rep and told her that in one hour I would be canceling my participation in the company health plan and I would contract for the Betaseron with BetaPlus myself, because as I had been telling her, with insurance or without insurance, the cost of Betaseron is $0. Well, that was the last thing she wanted to hear, because you know, the insurance business is not a money losing business. My company pays a lot every month for me to be a member of that health plan. I pay a little, but the lion's share is paid by my company. Within 30 minutes, my insurance company rep called with the news. "I don't know how it happened, but BetaPlus has agreed to pay for the deductible and your monthly cost is $0!" I just thanked her, but I hung up the phone knowing that they had never called BetaPlus until just now. Can I blame them? I don't. I realize that the people who work at the insurance company have processed many thousands, maybe millions of clients and they had no perception of anyone getting their prescription filled for $0. They had probably fielded so many calls from people thinking that the plan they signed up for wasn't supposed to work like that and they had no idea it would cost that much. There answer was always the same. "That's the plan you signed up for." A prescription for $0? That was totally out of the box thinking for them. So, they didn't even try until they were forced to, by my threat to cancel them. So, yes, I laughed after it was all said and done, but it was not a laugh that indicated that this was fun. It was a laugh that I was right and because I was persistent, it all turned out the way I had been telling everyone. They just weren't listening.

Is MS really MS?

I am not so sure anymore. Since I was diagnosed, I have looked into it. No matter how hard I try, I have never been able to trust doctors completely and realizing from the beginning that they really didn't know what caused MS, doubt set in upon me on the medication that was being prescribed. Recently, my doubt has grown even more. Perhaps I am the last MS diagnosed person to find out about Dr Zamboni and his findings. Perhaps not. Anyways, from how I understand it, MS is merely a symptom of something that isn't really a immune condition at all. What we are all subject to is a vascular condition where the blood flow from your brain and spine is constricted due to narrower than normal veins. That causes iron to collect there and allows the blood-brain barrier to be permeated and that is what causes the brain and spine lesions. Yes, maybe your legs feel numbness, but do they also feel heavy? Is your stamina down? Does it all make sense to you? It does to me. I want to know what is being done in this country to get this going? Dr Zamboni has pioneered a procedure similar to angioplasty where he expands the diameter of the veins. He has had incredible success. However, his success has been in Italy. I would like to know if there are doctors in this country who are going to Italy to learn what Dr Zamboni is doing.