Monday, June 14, 2010

WHAT A WHIRLWIND!!

It’s been about 2 months since my last blog, but what a busy time it’s been! I suppose I’ll begin with a medical update. I’m very displeased with my condition; I’ve seen a decline in the past month that is frightening. It is just so much harder to move around, I’m slower and more uncoordinated than I’ve ever been while not in the midst of an attack. I’m still getting around it’s just more difficult and tiring. The good news is that the right side of my body is feeling much better in terms of the tingling and sense of touch! My biggest problem is still physical mobility and this is worsening, it’s very scary at times or on certain days. This just reinforces the fact that the disease is active and causing damage right now!

I would have been liberated by now had Dr. Sclafani continued with his treatment and this fact gets me so angry. I’ve learned a ton in the last month about the various forces attempting to undermine CCSVI and the things that are going on sicken me. The CCSVI Facebook site is a phenomenal source of information but like everything else you must investigate claims and not accept everything that’s posted as fact but it is a super tool for disseminating information. People have been asked not to mention or talk about any doctors performing the liberation procedure because there are TROLLS that comb the site trying to find doctors to report and get shut down. Things are beyond conspiracy theory now and have evolved into flat out discrimination against people with MS! Our provincial health authorities have essentially banned anything that has MS attached to it. My doctor could send me to have my jugulars tested if there was a vascular issue but as soon as the lab sees MS, they are not allowed to test. No shit! Technicians are not being trained on CCSVI procedures anyway so it’s kind of a mute point. Bottom line is that I and everyone else are being abandoned by our medical system and government! I’m hoping to try and sue the government or file a complaint with the human rights tribunal for what I see as unethical, immoral and discriminatory treatment against people suffering the devastating effects of multiple sclerosis. I won’t accomplish this feat on my own but with others who are organizing to protest. I belong to CCSVI Calgary and there are protest groups like this organizing all over the country. You have probably seen some of this in the news, if we can continue with the pressure and solidarity I know we’ll make a difference. Hopefully we can bring about change to our twisted system and find some justice!

Because I’m so worried about what has been happening to me, I wasn’t giving up on getting treated. After learning that New York was postponed I began my search again. Mexico still wasn’t ready and still isn’t, and other facilities like Poland had very lengthy waiting lists. I was able to reach Dr. Tariq Sinan by email after learning that he was performing the procedure. To my surprise he was very prompt at getting back to me and actually opted to phone me! He says that more information can be discussed in a five minute conversation than over twenty or thirty emails going back and forth. Dr. Sinan is the doctor primarily responsible for the Kuwaiti Health Authority agreeing to test and treat all Kuwait citizens with MS. Dr. Sinan decided to treat foreign patients outside Kuwait since the government only allows citizens to take part. About once a month Dr. Sinan brings three other doctors with him to either Bahrain or Egypt to liberate 6 to 8 patients. Dr. Sinan is an interventional radiologist and he works with another radiologist, and I believe a neurologist and thoracic surgeon. At any rate he has a serious team of experience and competency to work with. After I checked him out and was satisfied that he was the real deal, on April 26th I emailed him back to be included on his treatment list. I was very pleased to learn that the cost will be less than I was going to pay in New York!

Amazingly he replied right away to say he had one spot left for the May 26th trip. This would not have given me enough time to prepare but he also said he was planning another date for June 3rd. He told me that I didn’t have to pay for the treatment until it was done so I figured why not sign up. The catch was that he wouldn’t be able to confirm the date until May 15th! That would give no time to prepare but I went ahead anyway. As the date got closer it became more infeasible for me and it wasn’t until May 19th that he confirmed the next available date was June 23rd. I began making plans for that date but in a follow up email he said I should not have booked anything until June 10th when he could confirm that the materials were available! That would give me less than 2 weeks to organize getting half way around the world!! I avoided blogging about this trip until I was sure everything was confirmed, I’ve had enough disappointment with delays and cancellations and I didn’t want anything to jinx me this time. So come June 10th I finally got confirmation and away I went booking flights and getting visa applications in. JUST CRAZY…but one week from today I’ll be on my way to Egypt! June 23rd will be a day for testing and my procedure is booked for June 24th at 6 PM!! What a journey to finally getting a liberation confirmed and an even larger journey to come as I make my way to Alexandria, Egypt.

That was just part of the craziness that has happened in my life since my last blog. Unfortunately the most significant event was the passing of my father on May 11th. This has been an extremely trying and difficult time but my family was all together and there for one another. It was tough under the circumstances to deal with a possible trip to the other side of the world to be liberated however the timing all worked out. I know my dad would want me to have this treatment above anything else and I know he’ll be smiling down on me from heaven on the 24th.

Another chaotic event was moving!! Yes as of the end of May I moved to a new house and I love it! I still live with the same roommate; we just changed houses and towns. I now live only 12 km from my children instead of 75 km and a 45 minute drive! This fact alone makes me so much happier with the bonus that I’m now in a bungalow! No more stairs to struggle up and down several times a day, now only when I’m doing laundry. We now live on an acreage, I mean hundreds of acres! There are very few houses on the entire property so we don’t really have a neighbour. We do have access to an amazing yard and the land owner has Shetland ponies, horses, about 75 head of cattle, a couple of donkeys and 12 peacocks that roam around free. There is a fishing hole that he stocks with trout that doubles as an ice rink in the winter. I’m so fortunate to have such a beautiful place that is totally awesome for our children.

One of the happiest events that occurred was that I finally met a woman that I'm attracted to that is happy to love me for who I am, MS included. I have waited and prayed for this for such a long time. Even though I’ve only classified her as my girlfriend for about a month, everything has been so smooth and we seem to be very compatible together. I guess I’ll find out soon enough because I’m bringing her to Egypt as my caregiver. Well more as my girlfriend but everyone freaked out when I said that I’d travel on my own for this treatment so a “caregiver” was required. I know I’ll be very glad and thankful to have someone along to help out, but I still would have gone as stubborn and determined as I am. To travel that far and not see any of this amazing country would be a crime so we will be away for 2 weeks! I’ll probably be free to go from my treatment on the 26th and then we’ll tour around before spending a few days in our stopover, Frankfurt. It will be quite the journey. Unfortunately things have changed a little from my original liberation journey in New York, the offer to cover my travel expenses is now off the table but I’ll be okay, somehow the Lord will work it all out.

One more amazing event that happened this last month, I finally finished writing my book! It’s been just over two years since I started it and I’ve been on and off of it several times but it is now complete. Well kind of, I’ll have to read over it a few times and make some changes I’m sure but hopefully I’ll have lots of energy when I return and will be able to finish it up fast. Then I’ll give it to a friend of mine for editing, and then… Hopefully someone will want to publish it! Maybe I’ll sell some online copies; maybe this will make up for the shortfall on my trip or fund another stem cell transplant in the future. Who knows but at least I finished it, one accomplishment I feel good about!

So all in all a pretty crazy time, especially for me whose life is usually so docile and slow! I won’t bring my laptop with me so no blogs while I’m gone but I am bringing my video cam and if I can figure it out maybe I’ll attempt a You Tube posting. Talk to you all again after LIBERATION!
LC

1 comment:

Loobie said...

Lee,
I'm so glad to read this blog. Man I'd been worried that you were 'off the grid' as it were. It sure sounds like you've been busy! Best of luck my friend and give 'em hell in Egypt. Great, great news.