Saturday, July 7, 2012
Conquering the Mountain
Saturday, October 15, 2011
Six Months
Times flies when you feel good!! It is hard to believe it has been six months already. I am holding steady with no fatigue, no pain or stiffness in my leg muscles, and my vision is clearer, without that haze that seemed to be there forever in my right eye. I am working mornings and enjoying being back in the classroom. I have one student who is quite challenging that is causing me some stress but other than that I am enjoying work. I still have energy to do things after work and even into the evening. I am sleeping well and waking rested. How or why CCVSI works may never be understood but for me it was more than worth it. I am waiting for my friend to go the end of the month and I am praying that it will work as well for her. It has improve the quality of my life and given me the ability to forget I have MS. It is no longer the grey cloud over my head. I still do worry at times that it won't last but it does not consume my thoughts. If things do seem to go downhill I will go again to Albany.
I am very proud to be from Saskatchewan, as they have taken the lead and are paying for 90 MS patients to go to Albany for treatment. They feel that Albany is leading the research and they want to join in and help those who suffer. The Saskatchewan government is not standing by, they are jumping in with both feet. Yeah!!! Now if only the rest of the country could figure that out.
Take Care!!!
I am very proud to be from Saskatchewan, as they have taken the lead and are paying for 90 MS patients to go to Albany for treatment. They feel that Albany is leading the research and they want to join in and help those who suffer. The Saskatchewan government is not standing by, they are jumping in with both feet. Yeah!!! Now if only the rest of the country could figure that out.
Take Care!!!
Monday, July 18, 2011
Three Months
It has been three months since my CCSVI procedure so here is an update.
I had to go back on the Baclofen. It was a little disappointing that I could not go off the medication but it helps control the spasms in my legs which have not gone away. I was however able to go back on with a lower dosage of medication.
We just got back from a trip to visit our parents in Saskatchewan. My daughter and I were playing a game of chase in which I was the Big Bad Wolf. I started to run and I ran so fast I had trouble stopping. I use to be on the track team in Junior High, no one could beat me. I was so fast in the 100m that I held the junior girls record for many years, maybe I still have the record, I don't know. It felt so good to run and feel that speed again. You don't know how free it felt to run and feel like a young girl again that no one could catch. Life is good.
I also had a moment of realization that your life does effect others. We went to a 50th Anniversary party and I saw so many people that I had not seen for so very long. People who remembered me from Junior High, my first year as a teacher, a time when I was well and MS was not a big part of me. Of course, being from a small town everyone knows everything about everyone. People told me that they have thought of me and always wonder how I am doing, if I am well, if I can work. I had the thrill of telling people about CCSVI and how it has turned back the clock for me. It was so nice to know that people remember that girl I once was but that they can still see her inside of me and that she has not faded away or been lost to MS.
CCSVI has brought back my energy and erased my pain letting me be who I am. Life is good.
I had to go back on the Baclofen. It was a little disappointing that I could not go off the medication but it helps control the spasms in my legs which have not gone away. I was however able to go back on with a lower dosage of medication.
We just got back from a trip to visit our parents in Saskatchewan. My daughter and I were playing a game of chase in which I was the Big Bad Wolf. I started to run and I ran so fast I had trouble stopping. I use to be on the track team in Junior High, no one could beat me. I was so fast in the 100m that I held the junior girls record for many years, maybe I still have the record, I don't know. It felt so good to run and feel that speed again. You don't know how free it felt to run and feel like a young girl again that no one could catch. Life is good.
I also had a moment of realization that your life does effect others. We went to a 50th Anniversary party and I saw so many people that I had not seen for so very long. People who remembered me from Junior High, my first year as a teacher, a time when I was well and MS was not a big part of me. Of course, being from a small town everyone knows everything about everyone. People told me that they have thought of me and always wonder how I am doing, if I am well, if I can work. I had the thrill of telling people about CCSVI and how it has turned back the clock for me. It was so nice to know that people remember that girl I once was but that they can still see her inside of me and that she has not faded away or been lost to MS.
CCSVI has brought back my energy and erased my pain letting me be who I am. Life is good.
Wednesday, June 22, 2011
CCSVI and Neurologists
I'm sure a pig sprouted wings and flew today. My neurologist at the MS clinic was more than happy to talk about my CCSVI treatment and was thrilled with the improvement in my symptoms. He was interested in my experience and we talked at length about MS research that is going on and the direction of research and medication. It was an actual conversation, not one sided. He actually said he was my advocate. Now that is an advocate with the MS drugs. In two weeks I will be off the Baclofen. I am waiting for the oral medications now approved in Canada to be approved by Alberta Blue Cross. When that happens, I can finally stop the needles.
A survey will be coming out to MS patients in Alberta in a few months, collecting data about MS. The survey will cover family history, geographical location, and info about CCSVI, if you have been treated and the results of that treatment. The information is long over due in being collected as a wide research of all MS patients. With so many new theories, they are looking at a lot of data to collect on everything.
My MRI showed one new lesion, a small one. That has been the only change int he last six and a half years.
I will see my own doctor next week to discuss further my health and treatment.
A survey will be coming out to MS patients in Alberta in a few months, collecting data about MS. The survey will cover family history, geographical location, and info about CCSVI, if you have been treated and the results of that treatment. The information is long over due in being collected as a wide research of all MS patients. With so many new theories, they are looking at a lot of data to collect on everything.
My MRI showed one new lesion, a small one. That has been the only change int he last six and a half years.
I will see my own doctor next week to discuss further my health and treatment.
Tuesday, June 21, 2011
Tomorrow
I will see my neurologist at the MS Clinic tomorrow for the first time since I had my CCSVI treatment. I'm not sure how to handle the response I'm sure to receive. Have suggested to my atheist husband that when the neurologist belittles my dramatic results that I should say that if it is not the CCSVI it must be the power of prayer. He is sure the doctor won't buy that either.
I have been lessening the medication I take for the spascity in my legs with no return of symptoms. I'm sure the doctor will find some other reason, like remission after a two year relapse. I'm sure there will be a good story to tell tomorrow.
I have been lessening the medication I take for the spascity in my legs with no return of symptoms. I'm sure the doctor will find some other reason, like remission after a two year relapse. I'm sure there will be a good story to tell tomorrow.
Friday, May 27, 2011
Waiting for the other shoe to drop...
Things have been going well. I have had a few things scare me lately. News of someone who had CCSVI and was doing well and now some symptoms have returned after a few months. I know, I need to let that one go. I had trouble with my hand yesterday. It took a lot of focus to sign my initials repeatedly in the Grade 3's agendas. But later sitting at my desk I could write fine. I had a day a week or so ago where I was just so tired. When I got up from resting my nerves sent impulses up and down my arms and legs and I had to lay back down. Then I was fine. Just uncertain as to what it all means. They know so very little about CCSVI and MS in general. One day at a time, I guess.
Sunday, May 8, 2011
Sleeping Again
I am up to seven hours of sleep a night. So far it has been good sound sleep for four nights. The six hours was hard to get up from but seven seems to be good. Maybe in a few days I'll try to bump it up to eight hours and see how that goes.
Have been reading and watching news about MS and CCSVI. It is so disheartening. I don't know what to do to open the eyes of the powers that be. I watched a new report with the Alberta Health Minister stating that they have 6-7 million to put into CCSVI when it is proven safe and ethical. Really?!?!?!? What is not safe about angioplasty? It is preformed here everyday. Ethical??? Is it not ethical to treat people who are suffering and help relieve that suffering?? I feel like I'm banging my head against a wall and screaming at the top of my lungs and no one is listening.
Frustration runs high when you know and have felt firsthand the power of healing and others don't believe. Living proof is not enough.
Sorry for the rant! My fellow blogger Marc, a.k.a. the Wheelchair Kamikaze, stirs up my frustration when I read his blog and he shares the corrupt world of big Pharmacy. Read his blog but I warn you, you will be enraged and frustrated too!!
Have been reading and watching news about MS and CCSVI. It is so disheartening. I don't know what to do to open the eyes of the powers that be. I watched a new report with the Alberta Health Minister stating that they have 6-7 million to put into CCSVI when it is proven safe and ethical. Really?!?!?!? What is not safe about angioplasty? It is preformed here everyday. Ethical??? Is it not ethical to treat people who are suffering and help relieve that suffering?? I feel like I'm banging my head against a wall and screaming at the top of my lungs and no one is listening.
Frustration runs high when you know and have felt firsthand the power of healing and others don't believe. Living proof is not enough.
Sorry for the rant! My fellow blogger Marc, a.k.a. the Wheelchair Kamikaze, stirs up my frustration when I read his blog and he shares the corrupt world of big Pharmacy. Read his blog but I warn you, you will be enraged and frustrated too!!
Thursday, May 5, 2011
Community Care Physicians
I chose to go to Albany, New York because of Community Care Physicians reputation and their experience with Interventional Radiology. Albany was not as far to travel as those who go to Europe and the American medical standards are the best and are what Canada's medical standards are based on.
You can check out their website by clicking here.
I got bumped up the list by requesting a Saturday appointment. There was additional costs but it moved me up the wait list by six months.
The care I received was second to none. My mom was with me and she is a retired nurse. She was impressed with the staff and facility.That says a lot as she has high standards for health care especially for the care of her daughter.
You can check out their website by clicking here.
I got bumped up the list by requesting a Saturday appointment. There was additional costs but it moved me up the wait list by six months.
The care I received was second to none. My mom was with me and she is a retired nurse. She was impressed with the staff and facility.That says a lot as she has high standards for health care especially for the care of her daughter.
Wednesday, May 4, 2011
Sleep Issues
I have been having trouble getting a restful sleep for over a week. Some nights I feel like I am awake the whole night.
I saw my doctor yesterday. She suggested that I no longer need to sleep the 9-10 hours I use to just to function. My body is needing to find a new rhythm. So until I start having a better, restful sleep I need to deprive myself of sleep. So the plan is I will only allow myself six hours for sleeping. I will have to stick to this until those six hours become consistently six hours of restful sleep and then I can increase the amount of sleep until I find equilibrium. It makes sense to me. This new body that CCSVI has given me is nothing like the old one. It moves so much easier and has energy to do things through out the day. So it makes sense that it doesn't need as much sleep. So I will find a new rhythm and I hope it is soon because I need some sleep.
Sweet Dreams!!!
I saw my doctor yesterday. She suggested that I no longer need to sleep the 9-10 hours I use to just to function. My body is needing to find a new rhythm. So until I start having a better, restful sleep I need to deprive myself of sleep. So the plan is I will only allow myself six hours for sleeping. I will have to stick to this until those six hours become consistently six hours of restful sleep and then I can increase the amount of sleep until I find equilibrium. It makes sense to me. This new body that CCSVI has given me is nothing like the old one. It moves so much easier and has energy to do things through out the day. So it makes sense that it doesn't need as much sleep. So I will find a new rhythm and I hope it is soon because I need some sleep.
Sweet Dreams!!!
Monday, April 25, 2011
Two Weeks
It has been two weeks now. Some of the old aches and pains have returned in my legs. My calves are still tight but some exercises are relieving the pain in the feet. My right leg aches when I drive. Again, I am doing some exercises to help alleviate the tightness in the muscles. The pain in my hips has not returned. My fatigue is no longer interfering with my daily life. I wake rested and ready for the day. I do take the time to sit and relax but I'm having the energy to bake cookie and cinnamon buns, something I only thought about before. The numbness is mostly gone. My feet fall asleep but I can wake them up. Life is much easier.
Thursday, April 21, 2011
No, I'm Not Cured
People assume that this treatment has cured me. It has made my life easier but it has not cured me. I am still having muscle spasms in my calves. My right leg hurts when I drive my car. Walking is easier and less painful but still there is some pains. Vaun has some stretches for me to work on to help with the stiffness in the muscles, especially in the right leg and hip.
Overall, I'm feeling great. My fatigue is much better. That extra trip up the stairs to retrieve that forgotten something is not so hard. For the most part the pain is not a major factor.
My body and me need to learn to work together, slowly to build up my strength and mobility. I need to remember, just because I can doesn't mean I should. I am not the energizer bunny.
Overall, I'm feeling great. My fatigue is much better. That extra trip up the stairs to retrieve that forgotten something is not so hard. For the most part the pain is not a major factor.
My body and me need to learn to work together, slowly to build up my strength and mobility. I need to remember, just because I can doesn't mean I should. I am not the energizer bunny.
Sunday, April 17, 2011
The small things
I finally felt it all sink in and feel normal again. It has been beyond overwhelming what has happened. I now realize that is it real and not just a dream.
I'm starting to notice the little differences now. I was writing and my hand didn't hurt. Usually, I can only write for a short time and my hand will ache but yesterday I noticed that I had been writing for several minutes and my hand was fine.
Teagan and I were watching the robins in the back yard and I thought of the song "Rockin' Robin". Well I found it on youtube and Teagan and I danced. We played the song twice and danced the whole time. This would have never been possible before. I haven't been able to dance that long for years. My legs felt good and not one pain. We of course put on another song and danced some more.
I am warm. I have always been cold and now I am warm. Warm feet, warm hands and that extra layer is just too much. Now, I know it is not the nice warm spring weather making me toasty, as it is still snowing here and the temperatures are hovering near zero.
I went to bed last night not exhausted and I slept through the whole night. Again, not my usual.
There are other things that I haven't noticed yet, I'm sure. I use to wish that I could be in a healthy body for just five minutes to see what it felt like. Well now I know, it is wonderfully amazing.
If anything, my new wish is that when you read this that you feel blessed in all that you are able to do and that you never once focus on what you can't do. Enjoy!!
I'm starting to notice the little differences now. I was writing and my hand didn't hurt. Usually, I can only write for a short time and my hand will ache but yesterday I noticed that I had been writing for several minutes and my hand was fine.
Teagan and I were watching the robins in the back yard and I thought of the song "Rockin' Robin". Well I found it on youtube and Teagan and I danced. We played the song twice and danced the whole time. This would have never been possible before. I haven't been able to dance that long for years. My legs felt good and not one pain. We of course put on another song and danced some more.
I am warm. I have always been cold and now I am warm. Warm feet, warm hands and that extra layer is just too much. Now, I know it is not the nice warm spring weather making me toasty, as it is still snowing here and the temperatures are hovering near zero.
I went to bed last night not exhausted and I slept through the whole night. Again, not my usual.
There are other things that I haven't noticed yet, I'm sure. I use to wish that I could be in a healthy body for just five minutes to see what it felt like. Well now I know, it is wonderfully amazing.
If anything, my new wish is that when you read this that you feel blessed in all that you are able to do and that you never once focus on what you can't do. Enjoy!!
Thursday, April 14, 2011
April 12th
April 12th
I woke up with Teagan’s arms wrapped around me. It was so good to be home. We snuggled in bed and then I got up with no pain. It is still a strange feeling to get up and have the pain gone. I don’t miss it but it was just there forever it seems.
I only had six hours of sleep but I wasn’t really tired. Adrenaline rush had me flying high. When I walked Teagan to school she began to skip and I joined in. We skipped down the sidewalk with Teagan smiling and saying “Mommy you are doing it, you can do it!” She was so excited. Then we came to a puddle and I jumped over it. She was thrilled again that I could jump over a puddle. Such simple things but I’ve been unable to do them for so long she couldn’t remember a mommy who was able to move these ways. And then we ran. My legs felt so free. They moved easily and there was not pain when they touched the ground. Then we slowed down and let Grandpa catch up to us. It was a moment so ordinary but yet so miraculous that I could move this way.
When I got back to the house, Mom and I headed to my doctors office. I was thrilled to be seeing her today. There was so much change in such a short time and she could measure the difference and record it. I had see Dr. Blench on April 1st so that she could record the pre-treatment state of my MS. Here is what she found.
On April 1st – My right foot has been numb for two years, spasticity in both calves, pain in right thigh. That added up to pain when walking and not being able to walk great distances. Even standing in the shower was too long and painful. I woke up every morning with pain in my hips and legs that was excruciating. The pain would ease when I walked around for while.
Balance – I could stand on my right foot for about 25 seconds and left 20 seconds. Balance was not too bad.
Most of the right side of my body had numbness, from head to toe.
Speech – trouble finding my words, halting speech.
Fatigue – always tired, never felt rested. I was sleeping at least 10 hours a night.
On April 12th – Spasticity has eased in the calf muscles. Pain in the legs is gone. Wake up and lie in bed with no pain in hips or legs, none!!
Balance – Can easily stand on either foot for minutes.
Feeling has returned to the right side of my body except for part of the right foot, it is slowly returning though.
Speech –Vaun noticed that it is no longer halting but free flowing.
Fatigue – I am tired from my trip to Albany but it is different than the overwhelming fatigue from before. Will know more in time when I’ve returned to my daily life longer. I do wake in the morning after 8 –9 hours of sleep and feel ready to get up.
My hands and feet have always been cold, I always have worn socks to bed but now I don’t need to. My feet and hands are warm again.
Another thing I noticed was the test where you put one hand in the other palm and turn it face up face down as fast as you can. Before I really had to concentrate to perform this task and now I can do it while carrying on a conversation. It is a simple thing but I feel the difference.
My mom told Dr. Blench how I had wore her out at the mall on Sunday and how that was unusual for me to be able to walk to much. My doctor was amazed at how much I had improved over such a short time. She will book an ultrasound for three months from now to see if there is any narrowing in the veins. She is excited to follow my progress and further document the changes. I am no longer taking the medication for my bladder and the neurologist at the MS clinic had prescribed two new medications that I will not even begin taking. One was for fatigue and the other for pain. After I have my MRI in June Dr. Blench will look at taking away another prescription for the spasticity in my legs. She is also going to look at the pictures from the procedure and then try to wait patiently for the report from Albany.
As for me, I will take it one day at a time. Vaun is going to put together some exercises to improve my mobility. I have the energy now to follow an exercise program and some motivation. I look forward to many more pain free days and gain some strength and stamina.
I woke up with Teagan’s arms wrapped around me. It was so good to be home. We snuggled in bed and then I got up with no pain. It is still a strange feeling to get up and have the pain gone. I don’t miss it but it was just there forever it seems.
I only had six hours of sleep but I wasn’t really tired. Adrenaline rush had me flying high. When I walked Teagan to school she began to skip and I joined in. We skipped down the sidewalk with Teagan smiling and saying “Mommy you are doing it, you can do it!” She was so excited. Then we came to a puddle and I jumped over it. She was thrilled again that I could jump over a puddle. Such simple things but I’ve been unable to do them for so long she couldn’t remember a mommy who was able to move these ways. And then we ran. My legs felt so free. They moved easily and there was not pain when they touched the ground. Then we slowed down and let Grandpa catch up to us. It was a moment so ordinary but yet so miraculous that I could move this way.
When I got back to the house, Mom and I headed to my doctors office. I was thrilled to be seeing her today. There was so much change in such a short time and she could measure the difference and record it. I had see Dr. Blench on April 1st so that she could record the pre-treatment state of my MS. Here is what she found.
On April 1st – My right foot has been numb for two years, spasticity in both calves, pain in right thigh. That added up to pain when walking and not being able to walk great distances. Even standing in the shower was too long and painful. I woke up every morning with pain in my hips and legs that was excruciating. The pain would ease when I walked around for while.
Balance – I could stand on my right foot for about 25 seconds and left 20 seconds. Balance was not too bad.
Most of the right side of my body had numbness, from head to toe.
Speech – trouble finding my words, halting speech.
Fatigue – always tired, never felt rested. I was sleeping at least 10 hours a night.
On April 12th – Spasticity has eased in the calf muscles. Pain in the legs is gone. Wake up and lie in bed with no pain in hips or legs, none!!
Balance – Can easily stand on either foot for minutes.
Feeling has returned to the right side of my body except for part of the right foot, it is slowly returning though.
Speech –Vaun noticed that it is no longer halting but free flowing.
Fatigue – I am tired from my trip to Albany but it is different than the overwhelming fatigue from before. Will know more in time when I’ve returned to my daily life longer. I do wake in the morning after 8 –9 hours of sleep and feel ready to get up.
My hands and feet have always been cold, I always have worn socks to bed but now I don’t need to. My feet and hands are warm again.
Another thing I noticed was the test where you put one hand in the other palm and turn it face up face down as fast as you can. Before I really had to concentrate to perform this task and now I can do it while carrying on a conversation. It is a simple thing but I feel the difference.
My mom told Dr. Blench how I had wore her out at the mall on Sunday and how that was unusual for me to be able to walk to much. My doctor was amazed at how much I had improved over such a short time. She will book an ultrasound for three months from now to see if there is any narrowing in the veins. She is excited to follow my progress and further document the changes. I am no longer taking the medication for my bladder and the neurologist at the MS clinic had prescribed two new medications that I will not even begin taking. One was for fatigue and the other for pain. After I have my MRI in June Dr. Blench will look at taking away another prescription for the spasticity in my legs. She is also going to look at the pictures from the procedure and then try to wait patiently for the report from Albany.
As for me, I will take it one day at a time. Vaun is going to put together some exercises to improve my mobility. I have the energy now to follow an exercise program and some motivation. I look forward to many more pain free days and gain some strength and stamina.
April 11th
Monday, April 11th
We were up at 7:20 am (EST) to get ready, eat breakfast and get to the clinic for my post procedure scan. At breakfast we met a lady and her son from Saskatoon. She was scheduled for her procedure that morning. I started to cry when I told them the pain in my legs was gone. I gave her a quick overview of the procedure and told her how wonderful the nurses are. Then I wished her luck.
When we arrived at the clinic, people were standing outside and I mean a lot of people. When the shuttle driver asked someone by the door to the clinic they told him the fire alarm had gone off and the building had to be evacuated. So we stood outside in the parking lot for five minutes. Watched the Latham fire department pull up, enter the building and two minutes later give the all clear. Exciting!!
I got my scan and was told to wait to see if the doctor needed to see me. The technician came back after ten minutes and said the scan was good so no need to see the doctor. I will get a report in two weeks with the official results of the procedure. When we left we saw the people from Saskatoon again.
When we were waiting for the shuttle to go back to the hotel we met up with Barb and Judy. Bard said the only thing she has noticed is the fatigue around her eyes is gone. Judy has a daughter in Calgary and she will call me next time she comes for a visit to see how things are going.
We took our time packing. We had a late checkout time of 1 pm. Mom went out for a walk and to take a picture of the daffodils in bloom. At 1:00 we checked out and went down to the restaurant for lunch. We took our time but still had too much time to wait.
The hotel shuttle took us to the airport at 3 pm. Our flight was to leave at 4:50 pm. We shopped for some souvenirs and had a hard time to find anything that had Albany on it. Most things said New York, but everyone things of the city and not the state.
When our plane arrived we started to giggle. It was so small. We had to go through an extra security screening before getting on the plane. I wasn’t sure why we had to do this until I got on the plane. The plane had 9 rows of seats with two seats in each row. Yes, that is eighteen seats. The co-pilot welcomed us on board and then showed all fourteen passages how to open the emergency exits. Then she hopped in to the cockpit and we were off. Luckily it was a short flight to Toronto, 1.5 hours. The flight was very bumpy and very loud.
We made it Toronto, got through customs and to our gate when they bumped the flight back because the plane had a flat tire. What a day. We got into Calgary around midnight. Dad picked us up at the airport. I woke Vaun up when I got home. Then I crawled into bed. It had been a very long day, 20 hours to be exact and I was glad to be home.
We were up at 7:20 am (EST) to get ready, eat breakfast and get to the clinic for my post procedure scan. At breakfast we met a lady and her son from Saskatoon. She was scheduled for her procedure that morning. I started to cry when I told them the pain in my legs was gone. I gave her a quick overview of the procedure and told her how wonderful the nurses are. Then I wished her luck.
When we arrived at the clinic, people were standing outside and I mean a lot of people. When the shuttle driver asked someone by the door to the clinic they told him the fire alarm had gone off and the building had to be evacuated. So we stood outside in the parking lot for five minutes. Watched the Latham fire department pull up, enter the building and two minutes later give the all clear. Exciting!!
I got my scan and was told to wait to see if the doctor needed to see me. The technician came back after ten minutes and said the scan was good so no need to see the doctor. I will get a report in two weeks with the official results of the procedure. When we left we saw the people from Saskatoon again.
When we were waiting for the shuttle to go back to the hotel we met up with Barb and Judy. Bard said the only thing she has noticed is the fatigue around her eyes is gone. Judy has a daughter in Calgary and she will call me next time she comes for a visit to see how things are going.
We took our time packing. We had a late checkout time of 1 pm. Mom went out for a walk and to take a picture of the daffodils in bloom. At 1:00 we checked out and went down to the restaurant for lunch. We took our time but still had too much time to wait.
The hotel shuttle took us to the airport at 3 pm. Our flight was to leave at 4:50 pm. We shopped for some souvenirs and had a hard time to find anything that had Albany on it. Most things said New York, but everyone things of the city and not the state.
When our plane arrived we started to giggle. It was so small. We had to go through an extra security screening before getting on the plane. I wasn’t sure why we had to do this until I got on the plane. The plane had 9 rows of seats with two seats in each row. Yes, that is eighteen seats. The co-pilot welcomed us on board and then showed all fourteen passages how to open the emergency exits. Then she hopped in to the cockpit and we were off. Luckily it was a short flight to Toronto, 1.5 hours. The flight was very bumpy and very loud.
We made it Toronto, got through customs and to our gate when they bumped the flight back because the plane had a flat tire. What a day. We got into Calgary around midnight. Dad picked us up at the airport. I woke Vaun up when I got home. Then I crawled into bed. It had been a very long day, 20 hours to be exact and I was glad to be home.
April 10th
Sunday, April 10th
I woke up early and lay in bed. Something was different; there was no pain in my hips and legs. I lay there moving my legs around, still no pain. I got up and when my feet hit the floor there was that familiar feeling in my feet of pain but it was not the intense pain it had been. But my legs, there was no pain. When I walked it felt like my legs were floating underneath me. It was a strange feeling to walk and not feel pain. I crawled back into bed and tried to fall back to sleep.
When mom woke up, I jumped out of bed and told her that the pain was gone. I was so excited, what else would change. We got ready and went down for breakfast. I couldn’t wait to Skype with Vaun, dad and Teagan. We went back to the room and sure enough the first time I checked Vaun was on Skype. He got Teagan on their right away and I told her that I had good news, my legs didn’t hurt. She had a big smile and gave Vaun a high five. Things were changing so fast. I couldn’t wait to get home to them.
There was nothing to do, so we got a taxi and went to the other mall. We shopped, had lunch went to a movie, shopped a little more and then ate supper. Mom had trouble keeping up with me at the mall. She got tired out and I just kept going. She couldn't believe how my legs didn't get tired.
We headed back to the hotel and tried to stay awake.
I woke up early and lay in bed. Something was different; there was no pain in my hips and legs. I lay there moving my legs around, still no pain. I got up and when my feet hit the floor there was that familiar feeling in my feet of pain but it was not the intense pain it had been. But my legs, there was no pain. When I walked it felt like my legs were floating underneath me. It was a strange feeling to walk and not feel pain. I crawled back into bed and tried to fall back to sleep.
When mom woke up, I jumped out of bed and told her that the pain was gone. I was so excited, what else would change. We got ready and went down for breakfast. I couldn’t wait to Skype with Vaun, dad and Teagan. We went back to the room and sure enough the first time I checked Vaun was on Skype. He got Teagan on their right away and I told her that I had good news, my legs didn’t hurt. She had a big smile and gave Vaun a high five. Things were changing so fast. I couldn’t wait to get home to them.
There was nothing to do, so we got a taxi and went to the other mall. We shopped, had lunch went to a movie, shopped a little more and then ate supper. Mom had trouble keeping up with me at the mall. She got tired out and I just kept going. She couldn't believe how my legs didn't get tired.
We headed back to the hotel and tried to stay awake.
April 9th
Saturday, April 9th
I was watching the clock at 3:41 am and the next thing I knew mom was waking me up. The hotel hired a cab for us as they had no staff that early to drive the shuttle. We got to the clinic at 6:55 am. We waited for the nurses and doctor to arrive. I was the first patient of the day, which made my mom happy because the nurses and doctor were fresh. They started an IV on me and took a blood sample to check for something. Before I signed the consent I discussed with the nurse about taking the Valium that was prescribed to me. I have a history of adverse drug reactions, sleeping pills that kept me awake, cold medicine that made me hallucinate, etc. The nurse asked how I felt about not taking the Valium. I was worried more about the Valium so I decided not to take it. I was calm, relaxed and ready to go. My mom on the other hand was a different story. She was anxious, pacing and very emotional. I was glad she had to wait outside the procedure room.
Dr. Englander came to talk with me. I asked her about the scan the day before. She said it was Dr. Zamboni’s protocol to do the ultrasound on the neck but she found my scan only had 1 of the 5 parameters for CCSVI and would have been labeled a normal scan. Dr. Englander said that the x-ray they would do with the dye directly in the veins was more accurate. Confused, I thought that maybe I don’t have CCSVI but hoping that I did. Having CCSVI is something you want to have when you have MS because they can treat it.
It was time. I walked into the room and hopped up onto the table. I had two nurses with me, Patty was at my head monitoring my blood pressure and pulse and Laura who was actually prepping me for the procedure. Laura gave me a shot of Novocain in my right groin, used an ultrasound to find the vein, made the incision and inserted the catheter. This all happened before I even heard the doctor’s voice. Patty was there for me. She talked to me, stroked my hair and monitored my vitals. Laura, Dr. Englander (they all called her Merideth) and the lab technician barely spoke to me. They carried on a conversation, which made me very relaxed as to how routine this procedure was to them.
When Patty said they are inserting the dye now, I felt pressure in my right ear and the room began to spin. I thought I would either pass out or throw up, neither of which would be very good when you have to lie perfectly still. I told Patty and she told Merideth. Everything stopped for a moment for me but they kept moving. Patty put an alcohol wipe under my nose to ease the nausea and told me to keep my eyes open. She kept talking to me and asking questions and telling me what was going on. All I could see was the x-ray machine over my neck and head and glimpses of the ceiling.
The first narrowed vein they found came quickly and Patty told me that Merideth asked for a balloon and that it would soon inflate. She said that I would feel some pressure but what I felt was pain. Patty said it wouldn’t last long and it didn’t, about a minute. I was torn between, I hope they don’t have to do that again and hoping they find all the narrowed veins and fix them. The next balloon was on the left side. It didn’t hurt as much, maybe because I knew it was going to be pain and not pressure and was ready for it. I heard a clicking in my left ear. I didn’t realize that the catheter was up that high in my head, but it was. The last vein that was ballooned was in my chest. Patty said I would feel the pressure in my back. That was the worst pain. I thought of Teagan and focused on her face and smile. My girl got me through that minute of pain, she is better than Valium. Then it was over and the doctor left and Patty talked with me as Laura removed the equipment from inside me. They put a dressing over the incision and then transferred me to a stretcher. When they wheeled me out to where mom was I couldn’t see her as I had to lie perfectly still but I heard her crying. I told to stop it, it was over. The nurses told her how well I did and my mom told them how strong I was. I wondered if I got a sticker that said I didn’t take the Valium.
I laid there for an hour while another nurse, unknown name, checked my vitals and brought me warm blankets. The other nurses and the doctor were already getting the next patient into the procedure room. Mom told me to close my eyes and rest but I didn’t listen, I wanted to have my eyes open. I laid there and then I felt my lungs fill so completely with air. I have never taken such a deep breath before. I closed my eyes and rested.
After an hour of lying still, they took my IV out and had me sit up. All was good so they let me get dressed and get ready to go. When we were leaving we stopped to see Barb from Halifax who was getting ready for her treatment. I gave her a quick overview of what the procedure was like. Then we went out of the clinic and I phoned Vaun. He couldn’t believe it was all over. I gave him a quick overview and then talked to my dad.
We went back to the hotel and ordered room service for lunch. Then I had a long nap. When I woke up mom was talking about going out for supper. I just couldn’t do it. My neck was sore, I had a headache and I was so tired. So we ordered in pizza and salad. We watched a movie on T.V. and then we went to bed. It had been a long day.
I was watching the clock at 3:41 am and the next thing I knew mom was waking me up. The hotel hired a cab for us as they had no staff that early to drive the shuttle. We got to the clinic at 6:55 am. We waited for the nurses and doctor to arrive. I was the first patient of the day, which made my mom happy because the nurses and doctor were fresh. They started an IV on me and took a blood sample to check for something. Before I signed the consent I discussed with the nurse about taking the Valium that was prescribed to me. I have a history of adverse drug reactions, sleeping pills that kept me awake, cold medicine that made me hallucinate, etc. The nurse asked how I felt about not taking the Valium. I was worried more about the Valium so I decided not to take it. I was calm, relaxed and ready to go. My mom on the other hand was a different story. She was anxious, pacing and very emotional. I was glad she had to wait outside the procedure room.
Dr. Englander came to talk with me. I asked her about the scan the day before. She said it was Dr. Zamboni’s protocol to do the ultrasound on the neck but she found my scan only had 1 of the 5 parameters for CCSVI and would have been labeled a normal scan. Dr. Englander said that the x-ray they would do with the dye directly in the veins was more accurate. Confused, I thought that maybe I don’t have CCSVI but hoping that I did. Having CCSVI is something you want to have when you have MS because they can treat it.
It was time. I walked into the room and hopped up onto the table. I had two nurses with me, Patty was at my head monitoring my blood pressure and pulse and Laura who was actually prepping me for the procedure. Laura gave me a shot of Novocain in my right groin, used an ultrasound to find the vein, made the incision and inserted the catheter. This all happened before I even heard the doctor’s voice. Patty was there for me. She talked to me, stroked my hair and monitored my vitals. Laura, Dr. Englander (they all called her Merideth) and the lab technician barely spoke to me. They carried on a conversation, which made me very relaxed as to how routine this procedure was to them.
When Patty said they are inserting the dye now, I felt pressure in my right ear and the room began to spin. I thought I would either pass out or throw up, neither of which would be very good when you have to lie perfectly still. I told Patty and she told Merideth. Everything stopped for a moment for me but they kept moving. Patty put an alcohol wipe under my nose to ease the nausea and told me to keep my eyes open. She kept talking to me and asking questions and telling me what was going on. All I could see was the x-ray machine over my neck and head and glimpses of the ceiling.
The first narrowed vein they found came quickly and Patty told me that Merideth asked for a balloon and that it would soon inflate. She said that I would feel some pressure but what I felt was pain. Patty said it wouldn’t last long and it didn’t, about a minute. I was torn between, I hope they don’t have to do that again and hoping they find all the narrowed veins and fix them. The next balloon was on the left side. It didn’t hurt as much, maybe because I knew it was going to be pain and not pressure and was ready for it. I heard a clicking in my left ear. I didn’t realize that the catheter was up that high in my head, but it was. The last vein that was ballooned was in my chest. Patty said I would feel the pressure in my back. That was the worst pain. I thought of Teagan and focused on her face and smile. My girl got me through that minute of pain, she is better than Valium. Then it was over and the doctor left and Patty talked with me as Laura removed the equipment from inside me. They put a dressing over the incision and then transferred me to a stretcher. When they wheeled me out to where mom was I couldn’t see her as I had to lie perfectly still but I heard her crying. I told to stop it, it was over. The nurses told her how well I did and my mom told them how strong I was. I wondered if I got a sticker that said I didn’t take the Valium.
I laid there for an hour while another nurse, unknown name, checked my vitals and brought me warm blankets. The other nurses and the doctor were already getting the next patient into the procedure room. Mom told me to close my eyes and rest but I didn’t listen, I wanted to have my eyes open. I laid there and then I felt my lungs fill so completely with air. I have never taken such a deep breath before. I closed my eyes and rested.
After an hour of lying still, they took my IV out and had me sit up. All was good so they let me get dressed and get ready to go. When we were leaving we stopped to see Barb from Halifax who was getting ready for her treatment. I gave her a quick overview of what the procedure was like. Then we went out of the clinic and I phoned Vaun. He couldn’t believe it was all over. I gave him a quick overview and then talked to my dad.
We went back to the hotel and ordered room service for lunch. Then I had a long nap. When I woke up mom was talking about going out for supper. I just couldn’t do it. My neck was sore, I had a headache and I was so tired. So we ordered in pizza and salad. We watched a movie on T.V. and then we went to bed. It had been a long day.
April 8th
Friday, April 8th
We had to get up early for the hotel breakfast. Our waitress asked why we were in Albany. Again she said so many people come for treatment and so many of them have such positive results.
After breakfast we took a taxi to one of the two malls. We shopped and had lunch then headed back to the hotel. At 2:30 the hotel shuttle drove us to the Capital Region Health Park. While we waited for my ultrasound we started talking with some people in the waiting room. We met Barb and her sister Judy from Halifax. Barb was in a wheelchair and had a cane. When I went in for my scan mom visited with Judy who is also a nurse. Barb’s treatment would be the next morning too.
After the scan I was told the doctor was busy and that tomorrow the doctor will talk to me before the procedure. I was disappointed that I came all this way and I would still have to wait to hear if I even had CCSVI. Barb had the same thing told to her. We visited for a while and then we went back to our hotel.
Mom and I got ready to go out for a nice supper.
We went to the restaurant in our hotel. Mom ordered a bottle of wine when they told her she could take it back to the room. We had a very nice meal then tried to get settled enough to sleep. The next morning we had to be at the clinic at 7 am (EST) which is 5 am (MST). We set the alarm for 5:30 am.
New outfits from the mall shopping.
Barb and Judy at the clinic.
We had to get up early for the hotel breakfast. Our waitress asked why we were in Albany. Again she said so many people come for treatment and so many of them have such positive results.
After breakfast we took a taxi to one of the two malls. We shopped and had lunch then headed back to the hotel. At 2:30 the hotel shuttle drove us to the Capital Region Health Park. While we waited for my ultrasound we started talking with some people in the waiting room. We met Barb and her sister Judy from Halifax. Barb was in a wheelchair and had a cane. When I went in for my scan mom visited with Judy who is also a nurse. Barb’s treatment would be the next morning too.
After the scan I was told the doctor was busy and that tomorrow the doctor will talk to me before the procedure. I was disappointed that I came all this way and I would still have to wait to hear if I even had CCSVI. Barb had the same thing told to her. We visited for a while and then we went back to our hotel.
Mom and I got ready to go out for a nice supper.
We went to the restaurant in our hotel. Mom ordered a bottle of wine when they told her she could take it back to the room. We had a very nice meal then tried to get settled enough to sleep. The next morning we had to be at the clinic at 7 am (EST) which is 5 am (MST). We set the alarm for 5:30 am.
New outfits from the mall shopping.
Barb and Judy at the clinic.
Our Hotel
We stayed at the Century House, Clarion Hotel recommended by the Community Care Physicians patient portal. We choose this hotel because they provided free transportation to and from the airport and also to and from the medical clinic and a hot breakfast was included every morning. The hotel was quiet, clean and everyone was so friendly. The restaurant had delicious food and the service was great. There was also a nature trail behind the hotel.
April 7th
Thursday, April 7th
My mom and I left for Albany, New York. There are no direct flights from Calgary to Albany, so we flew to Minneapolis and then on to Albany. We left Calgary at 2:10 pm (MST) and arrived at 10:30 pm (EST). We expected the hotel shuttle to pick us up but after a long wait we called and they had no one to come get us. It turns out that the hotel wrote down the pickup time as am not pm. We grabbed a taxi and the hotel paid for the ride. The taxi driver asked us what brings us to Albany. All I had to say was “I’m here for a medical treatment.” “CCSVI” he said. He has taken a lot of people for treatment, mostly Canadians.
When we got to the hotel we talked to Vaun and Dad on Skype and then got settled in.
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