So, I've been trying to put my thoughts together to write in my blog for about 6 months now, but it just wasn't happening. It wasn't happening because my brain was in cog mode, I couldn't put two thoughts together. I knew what I wanted to say, but my brain couldn't connect the dots.
Those of you that have MS like I do, completely understand. Those of you who don't have it, consider your aging and forgetful brain amplified by about 100. The thoughts are in there, but you just can't make an intelligent and thoughtful sentence, much less write your thoughts down for others to comprehend.
That all changed last Friday morning, went I had my 5th CCSVI venous angioplasty procedure in Chicago. I had my first one in August of 2010 in Tampa with my compassionate and caring interventional radiologist Dr. Bulent Arlsan. This is a man that knew nothing about CCSVI, but jumped right in and never looked back. He was willing to learn about something new and changed lives in the process.
That first procedure changed my life forever. The "auto-immune" disease MS, which is what my neurologist told me it was, which had been so brutal to me over the years, had a reprieve for the first time since 1998 when I was diagnosed. I could breathe for the first time in a while. It felt great.
I learned about CCSVI over the internet, particularly Facebook and a wonderful network of caring and compassionate MS friends and spouses lead by a tenacious and caring woman who husband was stricken by the disease, Joan Beal. Joan was convinced that there was more to MS that it being an auto-immune disease and did her homework, which thankfully led her to vascular surgeon, Dr. Paulo Zamboni, and his quest to help his ailing wife who was also stricken with this disease.
Long story short, CCSVI (Chronic CerebroSpinal Venous Insuffiency) was discovered and thousands and thousands of people all over the world with MS have benefitted from this simple, life changing out-patient surgery. Totally a God-Thing if you ask me, especially because I know Dr. Zamboni is a praying man and was asking God for the answer to help his ailing wife and boy did the Lord deliver!
CCSVI has been a real lifesaver for me. Suddenly my debilitating fatigue which had so crippled my life since my diagnosis was lifted. I could think again and I didn't have to lay down every 3 hours for a nap. I actually had a life again, as simplistic as that may sound to you. I jumped right in a began working closely with the CCSVI Alliance and those members who wanted to get the word out to the world. We had the first CCSVI Alliance Walk in Roll and Educational Seminar at Moffitt Cancer Center in the Spring of 2011 and were able to raise awareness and lots of money. That got us going.
Part of Arslan's Army, our team for the CCSVI Alliance Walk N Roll, Spring 2011
Over the course of the last 5 years, the CCSVI Alliance continues to grow and learn and has helped further research and educate MS patients and their families all over the world. www.ccsvi.org. Then the ISNVD (International Society of NeuroVascular Diseases) was also formed www.isnvd.org. to further research into the vascular components of diseases like MS, ALS and Alzhemiers. We are just on the cusp of learning so many things, and I thank God for Dr. Paulo Zamboni, and people like Joan Beal and Dr. David Hubbard, a neurologist and his wife Arlene, whose son was diagnosed with MS. They jumped on board early on and have spent the last 5 years of their life working to further educated others about the vascular component of MS. http://www.hubbardfoundation.org/
I have been blessed to be involved with many of the key players who sometimes risked their careers to step out of the box and look at this disease from a different angle. Unfortunately, most of the neurological community around the world still have their head in the sand when it comes to MS. They have claimed this disease, and believe it is theirs alone. After all, MS is quite a cash cow. A lifetime of visits to the neurologists, along with yearly tests, drugs and visits to the hospital for IV steroid treatments. I say shame on them for them not wanting to look at ANYTHING that might help their ailing patients. But it is what it is.
When I began having head crushing like my head is in a vice headaches about two months ago, I knew what it was and I knew where I had to go. I wanted to go to the doctor who knew me completely and one that I totally trusted. My wonderful and caring husband Steve and I flew up to Chicago to Rush University (where Dr. A. relocated to in January of 2012). This was my second time in Chicago and fifth time overall. I wouldn't trade any of them. The instant relief I have gotten when Dr. A. opens up my jugular veins has been totally worth it. I can live again for as long as the relief lasts. I'll just pray to the Lord that it lasts as long as possible this time. I have a lot of things I want to do for the Lord and for my family and my sweet Granddaughter Grace who is growing up way too fast! Please Jesus, keep me healthy so I can serve you!
Dr. A and me the day before my procedure last week, 11/12/15
Rush University Hospital in Chicago
So I have to say a big thank you to Dr. A. and his wonderful and caring staff, many of whom remembered me from 2013. They made this whole experience smooth as silk. They were all totally professional and compassionate. It's amazing how so many in the medical field have the gift of mercy. It shows when they do their jobs, it shows in the way they handle their patients. It shows when they handle all the little details to make everything go smoothly for you, like Susanne helping get us into the Bowman Apartments right on the Rush Campus. Lower rates and we didn't have to go outside! Another thing that was totally ordered by God because it was freezing out there!
Our view of Chicago from our apartments on the Rush complex.
One more thing from this trip that was straight from the Lord. When we wanted to come home early because I was feeling so much better, I called United Airlines. Normally they charge $75.00 per person to change a fare if it's within 24 hours of the return flight. The wonderful and caring customer service representative told us that we could go home early free of charge because it was because of medical reasons. I knew that was straight from the Lord. Thank you Jesus for opening up that way!
When I look back at the journey I've had over the last 5 years with MS and CCSVI, I know that God was a big part of it. Any and all healing I have had has come because He directed me to the right doctor and He opened the doors open wide for me. No one else gets the credit, because He did it all! To Him be all the Praise and Glory!
When you have Jesus in your life, He takes care of everything for you. He opens the doors, you just have to walk through them. He directs your path, if you let Him lead. He takes care of every little detail if you allow Him to do that. His Word tells us that everything works together for those who love Him. All He wants in return is Thanks and Praise. Pretty simple, right? Give it a try, He won't let you down. No matter what's going on in your life, Jesus can change everything if you let him.
My verse for today:
Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
Those of you that have MS like I do, completely understand. Those of you who don't have it, consider your aging and forgetful brain amplified by about 100. The thoughts are in there, but you just can't make an intelligent and thoughtful sentence, much less write your thoughts down for others to comprehend.
That all changed last Friday morning, went I had my 5th CCSVI venous angioplasty procedure in Chicago. I had my first one in August of 2010 in Tampa with my compassionate and caring interventional radiologist Dr. Bulent Arlsan. This is a man that knew nothing about CCSVI, but jumped right in and never looked back. He was willing to learn about something new and changed lives in the process.
Me and Dr. A a month after my first procedure in August 2010. We began working closely to coordinate the first Educational Seminar and Walk N Roll in Tampa to bring more awareness to CCSVI. |
I learned about CCSVI over the internet, particularly Facebook and a wonderful network of caring and compassionate MS friends and spouses lead by a tenacious and caring woman who husband was stricken by the disease, Joan Beal. Joan was convinced that there was more to MS that it being an auto-immune disease and did her homework, which thankfully led her to vascular surgeon, Dr. Paulo Zamboni, and his quest to help his ailing wife who was also stricken with this disease.
Long story short, CCSVI (Chronic CerebroSpinal Venous Insuffiency) was discovered and thousands and thousands of people all over the world with MS have benefitted from this simple, life changing out-patient surgery. Totally a God-Thing if you ask me, especially because I know Dr. Zamboni is a praying man and was asking God for the answer to help his ailing wife and boy did the Lord deliver!
CCSVI has been a real lifesaver for me. Suddenly my debilitating fatigue which had so crippled my life since my diagnosis was lifted. I could think again and I didn't have to lay down every 3 hours for a nap. I actually had a life again, as simplistic as that may sound to you. I jumped right in a began working closely with the CCSVI Alliance and those members who wanted to get the word out to the world. We had the first CCSVI Alliance Walk in Roll and Educational Seminar at Moffitt Cancer Center in the Spring of 2011 and were able to raise awareness and lots of money. That got us going.
Part of Arslan's Army, our team for the CCSVI Alliance Walk N Roll, Spring 2011
Over the course of the last 5 years, the CCSVI Alliance continues to grow and learn and has helped further research and educate MS patients and their families all over the world. www.ccsvi.org. Then the ISNVD (International Society of NeuroVascular Diseases) was also formed www.isnvd.org. to further research into the vascular components of diseases like MS, ALS and Alzhemiers. We are just on the cusp of learning so many things, and I thank God for Dr. Paulo Zamboni, and people like Joan Beal and Dr. David Hubbard, a neurologist and his wife Arlene, whose son was diagnosed with MS. They jumped on board early on and have spent the last 5 years of their life working to further educated others about the vascular component of MS. http://www.hubbardfoundation.org/
I have been blessed to be involved with many of the key players who sometimes risked their careers to step out of the box and look at this disease from a different angle. Unfortunately, most of the neurological community around the world still have their head in the sand when it comes to MS. They have claimed this disease, and believe it is theirs alone. After all, MS is quite a cash cow. A lifetime of visits to the neurologists, along with yearly tests, drugs and visits to the hospital for IV steroid treatments. I say shame on them for them not wanting to look at ANYTHING that might help their ailing patients. But it is what it is.
When I began having head crushing like my head is in a vice headaches about two months ago, I knew what it was and I knew where I had to go. I wanted to go to the doctor who knew me completely and one that I totally trusted. My wonderful and caring husband Steve and I flew up to Chicago to Rush University (where Dr. A. relocated to in January of 2012). This was my second time in Chicago and fifth time overall. I wouldn't trade any of them. The instant relief I have gotten when Dr. A. opens up my jugular veins has been totally worth it. I can live again for as long as the relief lasts. I'll just pray to the Lord that it lasts as long as possible this time. I have a lot of things I want to do for the Lord and for my family and my sweet Granddaughter Grace who is growing up way too fast! Please Jesus, keep me healthy so I can serve you!
Dr. A and me the day before my procedure last week, 11/12/15
Rush University Hospital in Chicago
So I have to say a big thank you to Dr. A. and his wonderful and caring staff, many of whom remembered me from 2013. They made this whole experience smooth as silk. They were all totally professional and compassionate. It's amazing how so many in the medical field have the gift of mercy. It shows when they do their jobs, it shows in the way they handle their patients. It shows when they handle all the little details to make everything go smoothly for you, like Susanne helping get us into the Bowman Apartments right on the Rush Campus. Lower rates and we didn't have to go outside! Another thing that was totally ordered by God because it was freezing out there!
Our view of Chicago from our apartments on the Rush complex.
One more thing from this trip that was straight from the Lord. When we wanted to come home early because I was feeling so much better, I called United Airlines. Normally they charge $75.00 per person to change a fare if it's within 24 hours of the return flight. The wonderful and caring customer service representative told us that we could go home early free of charge because it was because of medical reasons. I knew that was straight from the Lord. Thank you Jesus for opening up that way!
When I look back at the journey I've had over the last 5 years with MS and CCSVI, I know that God was a big part of it. Any and all healing I have had has come because He directed me to the right doctor and He opened the doors open wide for me. No one else gets the credit, because He did it all! To Him be all the Praise and Glory!
When you have Jesus in your life, He takes care of everything for you. He opens the doors, you just have to walk through them. He directs your path, if you let Him lead. He takes care of every little detail if you allow Him to do that. His Word tells us that everything works together for those who love Him. All He wants in return is Thanks and Praise. Pretty simple, right? Give it a try, He won't let you down. No matter what's going on in your life, Jesus can change everything if you let him.
My verse for today:
Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."