Life Can Be Hard

Another year. And, this is my first post in many years. Yeah! I have something to say. I'm not the same person I was last time I posted. MS hasn't been cured, true. So, there is that. I am no longer Relapse/Remitting. I am officially Secondary Progressive. I have graduated to the next level. No applause, please. It is reality only. Just the fact that I am here, is merely proof that I am back here, for this moment in time. Similar to so many others. I once asked, "why do so many MS Bloggers blog so proficiently and then just disappear." Then I became one of them. I can answer that question, at least in my case. Life. That is the answer for me. Life. Where did I go? Life. Why did I go? Life. Where will I be going? Life. Maybe a better question is, haha!, why did I blog before? Why wasn't I out doing Life? Okay, so that's the affair of things. Life changes. Life happens. Staring at my PC screen feels like me yelling at the world to notice me. Maybe what I needed was to step away from the PC screen, go out, and notice the world. I have been doing that. I want to do it more. I am pausing from Life to type this. Maybe this is a small part of Life. Maybe.

The Gravity of Volunteering for MS

I am tired of having MS and not doing enough to help others who also have MS. I hope I never stop feeling that way. It should only motivate me to do more. What have I done? What will I do? There is so much I can do.


In the last year, I donated my body to science. I took part in a CCSVI study at the University of Texas Neurology Department here in Houston. I still don't know the results. I need to find out if they have been released. But, I believe the early/unofficial report I heard was that there is not a link between CCSVI and MS. I had this feeling that is where that idea was going. But, let's all wait for the official results before we all run off with that conclusion.


I participated in my first Walk MS! I started a team. I received lots of encouragement from friends, family and coworkers, but alas, I failed to get anyone to join my team, Team At Peace. I did raise $650 towards MS that the National MS Society is happy to have and to spend as they see fit. I walked in Walk MS at The Woodlands. I have talked by email with the lead organizer of this event, and I am lobbying to be part of the organization committee next year. I have already submitted a couple ideas on how to make the event more rewarding for participants. We'll see if they like what I say. I'll have more news on that later, especially if my offer to help is received warmly.


So, I have that going.


I can't remember if I mentioned this. We all have our personal issues, I know. A little over a year ago, I was diagnosed with prostate cancer. I'm just over 50 and relatively healthy otherwise,... what? Yeh, I have this MS thing, sure. Anyways, long story short, I opted to have surgery as opposed to radiation treatment, chemotherapy, or doing nothing. There are side effects to surgery, just like there would be with any of the other options. But, here I am a year later and still able to sit up and take sustenance. So, with the conglomeration of all that has happened to me, I suppose that has contributed to me feeling like I want to give back, give away, give out,... just give. I mean, we're all mortal, right? We can't take it with us. We have to leave it all behind when we go. Why not work towards that now, while I'm still here. I feel the need to do that and that need seems to be growing. It's timing, I guess. It's time to feel humble and realize that I'm not the only one on this planet Earth that is being held down by gravity.


Okay, so what's the plan. I actually offered to start another Walk MS in my own part of town. The reply was that there wasn't enough available bandwidth for another Walk MS. Plus, people from my part of town had no problem traveling to the other parts of town to do their walk. Okay. We can put my efforts into the other Walk MS. I thought about riding a bike in the MS 150 from Houston to Austin, but I honestly am not sure if I could make it. I was a stud at one time in my life, but that was another guy and it seems like a lifetime ago. I will let that idea go.


I thought about having a MS Texas Hold'em Poker Tournament. I like to play and I know there are a lot of other people that like to play, and a lot of them will even pay to play. So, the possibilities are there for a MS Hold'em Tournament! I recently was one of the organizers of a tournament for the United Way that raised over $40,000. I know how to do it. I think I can do it. I think I will talk to the organizers of the Walk MS in the Houston area and see what they think. I have incentive!


Okay, until later!

I'm sorry that this post and my previous post appear to not use paragraphs. That is not my doing. I have sent a message to Google to get an answer.

A Workout For Someone With MS

For some it's rolling out of bed and then rolling to the kitchen in the morning. I'm lucky. I can do most things that people without MS can do. Sure, balance is an issue at times. My dog can attest to that. Long distance running is not on the menu. I am somewhere below that. Somewhere between housework and weight training and between the two, I don't prefer housework.

I've been slowed down lately with a heel problem and tendinitis in my elbow. The heel pain, after two months, is finally starting to subside. The elbow, ugh! Lately, it has been tough to open a bag of potato chips, it is so sore! My elbow, I can't rest. I have to use it. I have to eat those chips...

Anyways, when things calm down, and I trust they will... I will be getting back into my workout routine. I have an incline workout bench. You know, similar to the ones they sell on TV. Anyways, I love it. It allows me to use my body weight as the movable object. The angle of the bench changes the force it takes to move me. I can do it at home. I don't have to travel to the workout facility. I don't have to go into the dirty locker rooms at the workout facility. I am not working out on equipment that has seen the sweaty backs of thousands before me. My dog can jump up on my stomach and ride with me through my reps! She does! She really does! Jumping rope has become a feature of my workout. So simple, but so good for your cardio!

Coordination. Endurance.

Two years ago we had an employee Olympics. We had a relay and I chose to do the jump rope portion. I failed and was unable to complete the task. Someone literally jumped in to do it for me so our team could continue. I was embarrassed. Well, now I know that I could do it and with flying colors. So, now I am waiting to heal so I can get back into the working out that I love to do. I love it because I can see and feel the results. There is nothing better than being able to see and feel improvement, and to know that you earned it!

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.