So it’s been five months almost to the day that I had my angioplasty procedure, we’ve definitely had the transition from summer to winter! It’s been so cold that I’m really longing for the hot temperatures of Egypt! My status is holding pretty steady, mobility and balance are as difficult as ever but I have energy and I’m feeling pretty good. Still going to the gym, what has typically been twice a week anyway, it gets much more difficult once winter hits! Not just the cold but the snow and ice as well, getting my scooter in and out of my van is some times a real challenge. Walking through snow is very hard considering I don’t lift my feet too high when I walk. I should invent a slipper sweeper; the floors in my house would always be clean because I tend to drag my feet when getting around my house. Spasticity in my legs is still an issue and this gets worse when I’m really cold and last night was -30 Celsius but -40 with the wind chill…SERIOUSLY COLD! I don’ t know what that felt like because I didn’t venture outside of my house and who wants to battle that kind of extreme conditions especially when you have to contend with my speed which is slower than slow. Going to the gym on those days is not on the schedule but I have been able to maintain twice a week which is quite a feat. Apparently the weather will be giving me a break later this week; at least that’s what “they” say.
Today was only -27 so nice enough for me to get out; actually it’s not so bad when it’s clear and not windy. I had my ultrasound appointment this morning so I had to go out regardless. It was a good news/bad news scenario, my left jugular was open and appeared good but my right was completely occluded. It was tough to find the vein but the doctor’s opinion was that it was collapsed, definitely not open. So hmmm, what does that mean? I have lost some of the benefits that I felt, my eyes bother me again and my body buzz has returned somewhat but I don’t feel like I’ve progressed and that’s good, subjective but good. Now what??? Dr. Steed was unaware that I had already had angioplasty and started off our conversation with his opinion that people should wait before rushing out of the country to have the procedure. He was mostly concerned about stents and after more than 20 years in the field his opinion is worthy. It seems many people are coming back with stents and he doesn’t feel that they are being properly informed about all of the risks. His concern is not over stents slipping but he doesn’t believe we have the proper stents or experience with veins specifically rather than arteries. He was pleased that I didn’t receive a stent but I really didn’t have much information for him. It was my right side that almost needed a stent until Dr. Sinan basically forced the valve to stay open so I don’t understand why my right jugular is now closed. The fact of the matter is that I don’t think anyone knows the answer to that. Who knows about my azygos vein because you can’t see it with the ultrasound. It will take a few days to get the CD of my scan and the report but when I receive it I’ll begin to make some enquiries and contact Dr. Sinan in Kuwait for his opinion. For now at least I know some blood is flowing from my brain so I think I’ll remain positive and wait for more information to come from the many studies that are going on around the world. It will take long enough for me to pay off the first procedure let alone taking off to have it done again. It is much easier to have it done these days but I think I’m best off to wait and see how things go, but I will start researching again and get back in tune with the CCSVI world.
I will soon be on my third month of Tysabri so hopefully that will also help keep progression at bay. It’s really the situation as always, carry on and remain happy, thankful and hopeful. I am seeing positive results from the gym so as long as I can, I’ll continue working out. I’ve always kept a muscular upper body but I can see leg muscles now, they really are getting bigger and stronger. You know what “they” say, “use it or lose it!” I’ve just changed my workout routine around with my trainer. I’m still working on a lot of core strengthening and exercises focused on balance. It all seems a little weird to me because I’m used to working out with more weight and focus on particular muscle groups. My trainer says that my upper body is very strong so I’m working on other muscles to prevent the stronger muscle groups like my shoulders from stepping in to dominate. Rather than focusing on building my biceps or other individual muscle groups I’m doing much more general type of exercises that seem to spread more of the strength building. It doesn’t seem like I’m accomplishing as much but interestingly the results show a different outcome. Doing an exercise that works 3 or 4 muscles is actually showing results even though it doesn’t seem as intense and focused. Many exercises don’t even involve the use of gym equipment and weights so it seems odd but my body is responding none the less. When the day comes that my brain and body can communicate effectively again, I’ll be ready to go rather than letting myself waste away! I just pray to God that I remain healthy enough and live long enough to truly experience that day. We have to keep the hope alive and believe that the day will come!
As I said, in the meantime I’ll just continue to carry on as best I can and as long as I can. Hopefully this will be for an indefinite amount of time but I still have to live and treat this disease day by day. The real secret is in maintaining my smile and faith and I can’ t see that changing anytime soon.