Wow.. it is hard to believe that a week ago today I celebrating by eating steak and lobster in New York State. Of course the reason for celebrating was the fact that I was actually eating the steak and lobster and not trying to force another Ensure into me. For me, drinking an Ensure is no different than trying to gag down that glow-in-the-dark shit they give you for x-rays.
So how does it happen? How does one go from the hobbling dead to eating steak and lobster?
I am still trying to figure that out. It never could have happened without the help of amazing friends, family and even strangers that I will never know nor be able to repay. My family and I can never thank them enough. But just to say I had help and leave it as that is the ultimate in understatements. My trying to stay alive was a logistical nightmare that I would never have survived on my own. My problems were never just about trying to raise funds.
So, before we go any further... 1 year ago I wrote that CCSVI was not a cure but was a key. I stand by that.
Now for the parts of the story you didn't get. Fundraising efforts were started long before a location was found in hopes that they would never be needed. We did hope that our Health Minister Maureen MacDonald would have done the right thing, but instead it became obvious it would be in her best interest if I was dead. A person with a rapid progression cannot prove if the progression can be stopped if they are dead. But, instead of letting herself be known as the heartless person she is, she ignored my requests for a compassionate intervention as well as ignored any request to speak with me. The stress took it's toll.
I was down and I was out and I was ready to give up, but of course friends and family don't let you do that. I was literally doing everything I could to stay out of that wheelchair as I knew that if I landed there, it would have been the end. With no hope from my own government I had to concede to travelling. Having a need for Cannabis makes it very hard to just go off to foreign countries. As you scoff at the word 'need' in reference to Cannabis, that will be explained later.
And the nightmare begins. The ideal location of course would be with Dr. Siskin in Albany, NY. (No offense.. I am sure other Dr.'s are great... but having fatal form of MS with one chance.. I want the one with the most practice.) The problem with NY is they have this problem understanding that Cannabis is actually a medicine and shouldn't be a cash cow for organized crime like the DEA. Of course, I could just show up, and buy some crap off the street paying way more than it's worth, but then it would have to be processed. Any other state and this would not be a problem as I think I probably know someone in every legal state that makes a similar recipe.
So we tried to get an appointment fitted in somewhere in a legal state on a rush basis. Then it happened, a combined effort on about 20 different fronts from both doctors and patients resulted in a Clinic having staff that are compassionate book four serious patients for a Saturday. OK, it cost us an extra $1000 to pay that staff's extra day of compassion, but we figure it makes a great Xmas bonus and it is still more compassionate than our country. Everyone does a happy dance because instead of months to wait we have only have a few weeks.
The only real issue, it is with Dr. Siskin's clinic in Albany, NY. The dream suddenly took a turn for the worse. Until a friend came through. And this friend had a friend who had a friend who knew what I needed. And if I am ever questioned... I believe that list has about 4000 names of friends of friends to go through. So needless to say, the "Tooth Fairy" met me on arrival which allowed the nightmare to again be a dream and we will just leave it as that.
So, knowing that I was pushing myself and the fact that I had realized what happens to almost every other patient about two weeks before the procedure, I went for downtime. A relapse would have killed me and the stress was there. It was time to hide and I hid pretty well. I did a great job of avoiding the stress. Then, two days before we are to secretly fly out to NY, I get an email from Maureen herself. I took the email as an attack to cause more stress to my already compromised system. Then I smoked a joint and had a nap thinking how pissed she would be in a few days. No stress means no stress. That email is a blog in itself and is coming soon.
We arrived in Albany last Friday night. Had a quick meeting. Then checked into our hotel. It was nothing special but was ideal for an interview. About an hour or so later the room was full of cameras and people. We shot interview footage until about midnight. I may have said some not nice things about our Health Minister, that will hopefully make it into the movie. Because I am such a nice guy.
Saturday was procedure day! I was pumped. I had a few hours sleep. I was medicated. And I was curious. I went in with no expectations. I was curious. I wanted to know if I was right first and foremost. I also wanted to know if there would be changes I would notice. I figured it would be pretty easy since I only have about a million different symptoms. Plus, I had my little brother with me, worse case scenario he could carry me. It was a half mile and we walked. It was slow, painful, and extremely tiring. But I made it. Barely.
On the way in we grabbed a prescription waiting for me at the drugstore, then did the paperwork and hesitantly handed over an exorbitant amount of money up front. I would never even give a dealer that much money up front. So off to the procedure. I had to change into a dress but got a really cool pair of socks that will now be hung up on my wall. Got to pop a couple Valium from the prescription then laid back and waited.
Now, one thing I did not do was medicate before I went for the procedure. I did this on purpose to see how good this whole CCSVI hype was. That may have been an unseen mistake as I did not realize that I would be perfectly flat as long as I was. That makes a bad back very bad, but the Valium kept them laughing. All the staff were great and we were having a ball. But, they were still having much more fun than I was. The catheter is placed inside the groin, the feeling is very similar to that of a vasectomy. Speaking from experience.
Now it is my understanding that you can not feel the catheter as it is being moved through your body. Or should I say I WAS under that impression. I now know this to be false. In fact, they didn't believe me until I started telling them when they were stopped or going around turns. This actually just feels like pressure. But, if you can feel that, then you will feel the next part. They then inflated the vein 500 times it's diameter. Probably not, but then again. I kinda of lost count of how many times. I do know at one point they were wiping sweat off me and there was a lot of apologizing. I am still waiting for the official reports to be mailed, but I count 5 areas of stenosis on the images they gave me.
After the procedure is not much fun. You have to still lay flat on your back. And by this time they know you enough that they just smack your head back down every time you lift it. I have dents now. So for an hour you lay and stare at the ceiling wondering if anything is different. Especially since you don't feel any different than you did before the treatment. Then it comes time. Now of course because you are medicated they make sure they help you to your feet in case you may be dizzy. I figured what better way to test it.
I asked the tech to let go of my arm and for the first time in 4 years I never moved wobbled or even teetered, with my eyes closed. So I stood on one foot, then the other with my eyes open and closed and said "Okay, I'm fixed we can go home now." I had balance and I had energy. I also thought I had strength that I now know was nothing more than adrenaline. After I got dressed we headed out. We got tired of waiting for a cab at an empty building so we walked back to the hotel. It was great. Less than a couple hours out of surgery and I am walking better and faster than I have in years. We grabbed a coffee and a donut on the way back for the next test.
I found out quickly that while the pain stopping me from eating and drinking was not gone it had lessened greatly. Then I also realized that I had also missed some medicine. It worked. We went to dinner and I ate. I also did not eat all the food in the picture. I also did not drink all of the beer. But I did eat and drink and it was great. We spent the rest of the time walking. Pretty much everywhere like the mall all day Sunday.
Monday morning I still got up at 5 which is 4 in NY time so I lazed until we walked back to the clinic for the follow up ultrasound. All went great. So great we walked back by way of a giant Target store. Then back to the hotel to pack and get ready to leave. The flights were on time, it just sucked coming home so late at night in such bad weather. Friends and family met us there with cookies but because the weather was so bad we never got a chance to really visit or even say hi in some cases. (Sorry Crystal's dad.) So we all braved our way home in the storm. I am not even sure what time it was when Yvonne dropped us off at the car in Truro, but I crawled into bed at about 3.
I think the flu hit sometime late Tuesday afternoon or early evening. I do know by 11 Chrissy was ready to call 911. Since then, I have been recovering from the flu. Now that that is over I can start recovering from the CCSVI. Then I can start recovering from the MS. The recovery process will just take time and a lot of work.
I already know what it is going to take for recovery and I had started the recovery process over a year ago.
To put it as simply as possible. Dr. Zamboni's theory states that blood trapped in the brain causes iron deposits left behind causing the immune system to attack. The CCSVI procedure uses balloon angioplasty or in worst case stents to correct deformities in the Jugular and or Azygos veins. The increased blood flow allows proper drainage from the brain thereby stopping the progression. Or does it?
More than one doctor will admit that I am only alive because Cannabis is a vasodiltor. Meaning it allows for more blood flow through the veins. The CCSVI procedure should then correct that blood flow for me to no longer need to use Cannabis. Or so one might think.
The catheter used feels like it is about four feet long. It's diameter is slightly smaller than the actual vein to allow it to travel. When the vein comes to a branch that is a smaller diameter, it has no choice but to be bypassed. This means that the only stenosed veins that can be treated are the bigger ones.
I have always maintained that people will still have MS after the procedure and they will still have symptoms and may even progress in disability over time. They will also need follow up care. I didn't say this because I just pulled it out of the air one day. I say this by watching others and using common sense.
If one has an easily seen stenosis in a large vein such as the Jugular or the Azygos, it only stands to reason that smaller veins will also be stenosed. If these smaller vein cavities can not be reached by way of catheter, they will continue to cause progression and symptoms. My greatest concern of having the procedure was the effects of a vasodiltor such as Cannabis being used with stents. This apprehension was in not knowing the mechanics of the plant. Luckily, I had a doctor with the same concern who was able to do some checking for me. Most vasodiltors work by weakening the vein wall, while Cannabis does nothing to the actual vein. Cannabis relaxes the muscle surrounding the vein allowing for proper blood flow making it probably the safest vasodiltor. And that is why your eyes get red when you smoke a joint.
As I have stated before, Cannabis was not approved for MS in Canada because patients said it worked, it is here because they proved it. At the time, no one knew how or why it worked, just that it worked. I wanted to know why. As well, since the US Department of Health patented Cannabinoids as an anti-oxidant as well as a neuroprotectant, it only makes sense to use the medicine they suggest for someone with a neurological disorder brought on by a problem with oxidized blood in the brain.
Until technology advances to be able to correct the deformities that will be in the smaller veins, people will continue to have MS.
I will stand behind Dr. Zamboni's theory as a needed start to treating Multiple Sclerosis by correcting the major areas of concern. And until I can be proven wrong (not likely), I will stand behind my theory that the ingestion of whole plant Cannabis will be needed to correct the smaller areas of concern allowing for a much better quality of life. But better yet, this combined treatment will offer life instead of misery followed by death.
Thank you all that helped keep me alive this far. Now it's up to me to keep it going.