One Year, What a Difference

Hard to believe it has only been a year. So much has changed in my and many MSers lives. We have had the fortune of Avis Favaro reporting on Dr. Zamboni's theory. I have to say the show W5 has totally changed my life. First it helped to make my MS make sense finally. My symptoms were really vascular and I knew I needed this surgery before any more damage occured. I had a hard couple of months trying to figure out where to have the procedure done but the Internet came in and I too must give it credit for helping to save my life too. Once I made the decision and went to Poland I have not looked back. It is close enough to 7 months now that I can say it was 7 months ago.
I am so glad that many of my special MS friends have received the procedure. As with anything in life there are those that have success and there will be some that don't have the results. My heart goes out to those that did not have the success with the surgery. I just really wanted everyone to get better and of course it didn't happen that way. We all deserve the chance for this surgery and our doctors and country have turned their backs on us. No one is more to blame for this than the MS Society of Canada. They have been the most at fault for telling doctors and the government to make sure this surgery does not happen. I find instead of bad mouthing them I spread the word to donate elsewhere. When charities phone for donations from me I explain that I had to spend 14 000 dollars for my own illness that the Society that signed up to help me has blocked. I say to call the MS Society and express that they would like to know why the MS Society has turned its back on the very people it is supposed to help. Of course they wouldn't but it made me feel a little better. My charity had to stay at home as that was a lot of money.
I just want to say that this has been one great year and I have everything to be thankful for. Now we need to spend our energies into making sure there can at the very least be follow-up care for us in Canada.

Finally an Update

Hi Strangers,

What's been happening since my last post? I have been on the phone a lot helping those wanting to go to get CCSVI treatment. June was quite busy on the phone and wrapping up my daughters' piano and singing lessons. On July 2nd I travelled to Toronto to meet with the founding members of the group Angioplasty For All. This group is going to challenge the Charter of Rights Section 15. There is a lawyer that they are hiring and hopefully they will win the case, if one province wins then the rest will follow. This is huge and they will be looking for your help. Instead of donating to the MS Society sending money to Angioplasty For All will do more help for an MS patient than the Society will. If you would like information on how to send to our newly formed corporation please message me and I will send you the information vhoenecke@hotmail.com. I did not get a chance to see much of Toronto but enjoyed the company of MS friends. I was so fortunate to meet the husband of Barb Farrell and so many others.

July 18 was camping with my family for 2 weeks, this is where I noticed how much better I am. I was able to actually camp. In the past I would lay in bed most of the time in the air conditioned trailer while my family spent time at the beach or tubing with the Sea doo. My husband Jim bought a boat because he really wanted me to be able to join in on the activities with the girls. I was able to be up all day and spend time out in the hot sun, before I would get disabled in the heat. I Was in the boat for 3 hours at a time having a lot of fun, no more sleeping all the time for me. We spent the 2 weeks at Jackfish Lake north of Northbattleford. What a lot of fun we had together. It was no longer a chore for me to go camping. We returned on August 1st and Jim went to be busy on his farm, not sure where this month has gone but we seem to be busy. On the 7th we travelled to Yorkton to attend my cousin's 40th birthday. While there I noticed another difference, when visiting with my cousins before I was not able to spend the evening time with them, I would have to go to bed. I was able to stay up past 1 am., something unheard of in the last 5 years. I could basically do nothing before, now I was able to interact with my family. I don't think I am getting any better just that I am noticing more things as I do them. On our way home from Yorkton we went a bit out of our way to stop in Wadena to visit a lady named Elsie in a special care home. Her granddaughter really wants her to have the surgery but I don't think that Elsie can make a trip too far. This is the reason we need this done here and we need it now. Don't wait 5 years for those doctors to run this trial into the ground. They don't want a vascular condition to be anything to do with MS. Neurologists have the biggest egos of any doctors and they will not allow MS to go to the vascular surgeons. This is a turf war that will likely not end in our favour. There are however too many people like me coming back with great results. I hope that these doctors fighting with the Zamboni theory will someday themselves get MS or have a loved one with MS. Let's see if they would like to wait the 10 years for science to say whether the proven procedure of angioplasty would be good for MS patients. What the heck kind of morons do they think we are? Please do not insult my intelligence by saying this effect I am having post surgery is a placebo effect. I don't think that I wanted to be in bed most of the day before suffering from fatigue and pain, I am sure I wanted to be up living with my family.

August 12th I ventured to Saskatoon to have an appointment with a neuro physiotherapist. This appointment lasted an hour and she was quite thrilled at meeting someone that has had the surgery. I only wish she would have seen me before and been able to compare the before and after results. I noticed that my hamstring muscle on the right side has a ton more movement. At my previous physio I could hardly move my leg up but she was able to move it to 70 degrees off the table. I told her that was a huge difference. We were able to discover what MS has wrecked in my body. I pretty much have no muscles in my right side from my knee up to my chest. Hopefully after she has completed my assessment I will be able to have a routine that will help to rebuild that side of my body. I can't expect to get back to "normal" but I would like to be as strong as I possibly can. I will recommend those people coming back after surgery to get into see a physiotherapist that will help to rebuild their lost muscles. My MS symptoms have stopped getting worse so now my body has a change to get better. No more progression of disease gives my body a chance to recover.

I will be going back to work part time as my doctor does not think that I should jump into full time work. After having vascular surgery it is important to build up strength something that I will be able to do with my therapist. My goal is to return to work full time in the 2011/2012 school year. That is something that I never thought would happen, before my surgery I wasn't going to be going back to work at all. I was going to apply for permanent disablility but now I am working towards full time. I am changing my mindset for what I thought was going to happen in my life. Home care and nursing homes are not part of my plan anymore. There is a God and he gave me a miracle.

Val

Too Busy to Post!

Hi Everyone,

It's been a while but the news is still good. I am feeling stronger everyday. Today I am in Regina, Sk. I arrived last night to support a CCSVI Saskatchewan meet and greet. I get there after a difficult time leaving my home. My article went into the Crossroads newspaper on Friday (21st) and I have been getting a ton of calls from people wanting liberation. I really enjoy helping people and I can only hope that more people will be able to feel as well as I do now. Teal came to Regina with me which makes the trip a lot more fun. We arrived just in time at the mall for things to get underway with CCSVI Saskatchewan. Silly me wasn't expecting cameras there but I was interviewed, not looking my best I might add. This morning (very early) we had to go to CBC to be interviewed with Ted on the morning edition. I got Teal out of bed at 6 and we went to Tims to get her a muffin and me some coffee. At CBC the interview was short but impressive. I will put some sites here where you can go. I went here to download the podcast of my radio interview www.cbc.ca/podcasting/pastpodcasts.html?36ref36 . Iwas also on the late night news and the site for this is www.cbc.ca/video/#/News/Local_News/Saskatchewan/ID=1504572560 . Hope all is well with everyone. I have enjoyed meeting so many new MS friends. I have a bond with all. In sickness we bond and in wellness we conquer.

Val

What has changed?

1) I have no pain. The right side of my body from the back of my head down to my feet suffered severe pain.

2) No pressure in my neck. That had been my major complaint to my neurologist was incredible pressure in my neck. Up to and post diagnosis in January 2009 I would tell my neurologist that I did not have headaches but I had incredible pressure in my neck starting at the base of my skull in the back of my head and wrapping around the front. I told her this three times and in my June 2009 appointment she got very angry with me telling me that those symptoms had nothing to do with MS and to quit telling her about them. Looking back afterwatching W5 I figure she knew about the theory and thought I did too and was fishing for her ideas. I did not know anything until W5 aired.

3) I feel the right side of my body. I can type much better now that I can feel my right hand. It always felt like I was manipulating someone else's hand to type. My mistakes are getting less and less but I do notice that my right hand is going faster now which sometimes makes me have errors.

4) I can swallow properly and I do not feel a lump in my throat on the right side.

5) My bladder eliminates properly.

6) I do not have drop foot. I used to have to make a conscious effort to make sure my right leg was lifted enough so I did not trip. Many times I would fall going up the stairs because my foot was not lifted enough.

7) I have no fatigue, actually I have tons of energy. Last year I started to take a stimmulant called Modafinil which is prescribed for people with narcolepsy. Before taking this drug I would begin sleeping in the early afternoon and often not be able to get up until the next morning. I have not taken the drug since the day before my treatment. When I arrived home Tuesday night (4th) I had been awake for 24 hours which is unheard of with people suffering from MS.

8) I have colour in my face. I used to look grey and I wore a lot of makeup which you really couldn't tell. A lot of people in town have said to me oh, I see you are wearing makeup. When I tell them I always wore makeup actually more than I am now they are shocked. CTV news Saskatchewan interviewed me the day after I came home (Wed) and after watching the news that evening my husband said, "You might think I am crazy but your eyes have more colour. You look like you are wearing coloured contacts". He then said that he looks back now and said my eyes were green when we got married but had changed over the years to a grey colour. That is probably the most Wow moment I have had and there have been many since I have returned.

9) I am happy. Many times we with MS are branded as depressed but I never thought that I was. I knew that I was terribly sick and that may make a person seem depressed. I have to be honest that I haven't been this happy for 20-30 years. I am in shock everyday at how well I feel.

10) I lost about 10 pounds of fluid. There was definitely something causing fluid build up in my body. It took nothing to lose weight and size. I really think that was the pressure I felt all over my body.

Hope that explains how I am feeling and I think that each day I am discovering something new that's better. Some of these things I had no idea had anything to do with my MS before. I live in wonder everyday and I am so happy I just wish everyone with MS could feel like this. I never dreamed it would be this good before I went, my goals were realistic what I wanted was the stop to progression of the disease, less fatigue and less pain. What I got was unthinkable for me. I am in shock still.

Here is for Avis

Hi all,
I sent a letter to Avis Favaro of CTV W5 today. A good friend of mine Michelle Walsh suggested I share it with you.

Hello Ms Favaro,

I am Val Hoenecke and I was recently liberated in Poland (April 28, 2010). It all started with a show I watched in November, little did I know then that in 5 short months my MS symptoms would be gone. When I was diagnosed I thought I was done for and there was no hope. I watched my dad die a horrible death from this disease and I was living in hope that it wouldn't hit me that bad until my children were grown. I watched you on W5 with Dr. Zamboni and looking back now I can't believe this journey. I have hope, I feel amazing, I forget what it is like to be sick. Everyday I discover new and amazing things.

I wanted you to know that many people ask me how I arrived where I am today. I say that there are a few things that saved my life:
1) W5 and Avis Favaro for bringing this story to Canada
2)Dr. Zamboni for having the courage to think outside the box.
3)The Internet
4)Poland Euromedic
5)My dad and the angels that gave me the strength and courage to do what I did.

I have been saying your name for months now in my thanks and I wanted you to know the impact you have made on me. If I had the power to make you a patron Saint I would. I name you in my prayers and I have nothing but good to say about you to anyone that will listen to me.

God Bless you Avis Favaro, you are my hero.

Val Hoenecke

I'm Home

What a great feeling to walk into your house and have your family waiting for you. This time was so much more special because I felt like I had a chance a being here for quite some time and being able to enjoy my life. After another trans-Atlantic flight I made it home on May 4th at 9 pm. Jim picked me up at the airport and brought me straight home to Tavia, Teal, Mom, and Emma of course. I had been awake for a good 24 hours by this time but I stayed up a little longer to show everyone my souveniers. May 5th brought a new day in Canada and a phone call from CTV news. They said they would be leaving right away and coming to interview me and I said "really?' I have to admit I was still pretty jetlagged but I struggled through anyways. After Mike Ciona left I was worried what they would put on the segment but did they ever do a good job. I asked for a copy so I could put it on Facebook and my Blog.

I thought I would use this blog to let everyone know what my family is noticing upon my return. The first night I was so tired making it difficult to tell anything. Jim noticed right away that the fluid build up on my body was gone. He thought my face was a lot thinner, this couldn't be because of a diet because I ate like a pig in Poland. Everyone noticed I wasn't so tired. Last night Jim said that my colour is much better and that he thinks my eyes have more colour in them. My mom agreed realizing that she had noticed something different there too. Jim said that I probably have had dull colour (grey) for a lot of years, possibly 20 or more. The small things that will be changing in the next while are really big for me. I always noticed the progression of my disease and now I am so happy to be able to notice improvements. It is almost sureal for me, I feel like I will wake up and all of this was a dream. I wished for improvements or at the very least no more progression of my disease. I never would have wished for what I have received so far, I thought it would be impossible. What have I learned from my experience:

1. Prayer works
2. Dream Big
3. Family is everything
4. You can buy health
5. Believe in yourself

I have nothing but good to say about the country of Poland and their health care system. I don't have much good to say about ours. I have to say that there are good people in the system though. Dr. Ernst has been very supportive of me throughout my MS journey. I will do everything in my power to get the tides to change and the people with MS treated here. I now know my purpose in life. Before I thought I was destined for suffering, now I am a crusader.

Last Day

I must pay a special thanks to Warren for coming to Poland with me. It was so good having a seasoned traveller along on this tough journey. He was able to meet and fall in love with a beautiful country. We have some great memories of our trip and we hope the volcano just holds the plume for 1 more day. Will let you know when we arrive in Canada. Until then, thanks for following and I hope to see many of you soon.

Happy and Sad

Not sad about very much only that I am leaving tomorrow. Weird but I am also happy that I am leaving Poland tomorrow. At 2 am Saskatchewan time I will board my plane for Frankfurt, I can only hope I then make the connection to Calgary, then Saskatoon. If I don't make it I will probably have to cool my heels in Frankfurt. I have heard great stories from my brother Warren this trip about the European countries. From what I saw of Germany they enjoy order. They also enjoy power when they are accepting your passport. Warren was ready to have a cigarette and we waited for ever in a line, it seemed they enjoyed making us wait and watch out if someone of colour was at the wicket. Warren said that in Hell the cops are Germans, the cooks British, and the Italians run the train system. We had a good laugh at that.

I miss my family very much but I also love this city of Krakow very much. I have never seen anyplace so clean. They even have Disney beat. The food is amazing, we haven't had a bad meal yet and I must say that tonight's supper was the best. We went to this little Italian place in the old town. You could see right into the kitchen with an old pizza oven. There was one cook and he was fantastic. I had Lasagne and Warren had Caniloni. Wow, both meals were great. It was the real deal. I always trust places where I can watch the cook in the kitchen, there is a level of trust. We walked a ton today and Warren is very tired. I am not too bad even though I have not taken my stimmulant since the day before my surgery April 27th. I stormed the Wawel Castle today, what an amazing place. We could not do the tour of the castle but we saw the cathedral where all the kings were burried. It was very interesting, we rented headphones and they acted as a tour guide would but you could hear them. I think the president must be burried in the castle part. We learned a lot of Polish history then went back to the hotel for a rest. We hopped the tram again and went down for our wonderful supper. I will have to pack but I find it so much easier packing from a hotel room vs home because you don't have to think you just have to take everything.

Seeing my family will be very exciting for me. I don't think my kids have ever known me well. I am not saying I am cured but I will say I have no MS symptoms. If you did an MRI of my brain tomorrow there would still be lesions there but I won't guarntee they will be there next year. I owe a debt of gratitude to many people for making it easy for me to hop a plane across the Atlantic. To Jim for encouraging and financing the trip. For Tavia and Teal for being excited for me. To my mom for coming and helping at our place. To Cliff for visiting and breaking up my absense. To Kent Carlson for taking my position at work alowing me the confidence to leave. For the Long family for looking after my little Emma which took a great deal of stress off my family. To Kim Wisse for helping Teal at the recital. To all the people that made it easy on my family during my absense. I owe you all a deep gratitude and it may not seem like much to you but it is really big to me. God bless you all and thanks so much. Will see you soon. The new but actually old me. The way I was before my MS symptoms got out of control.

It's Going to Get Ugly!

Here is a great article by Dr. Ashton Embry explaining why it is going to get ugly with regards to this treatment becoming available. http://http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.direct-ms.org%2Fmagazines%2FTreatment%2520now%252004%252010.pdf&h=8e9c3
He does a great job explaining both sides and it boils down to the MS Society and Neurologists having everything to lose having us treated and we MSers have everything to gain by getting treatment. Who will win in the end? Hopefully us but it will get ugly. The MS Society and Neuros first of all do not realize the power of the Internet and the intelligence of many MSers. We are not the idiots they think we are. Upon my return I will look into educating the people of Canada and doing something with regards to the MS Society to bring them down. I am only one small person in Canada but I carry a big stick. I have family and friends aflicted with this terrible disease and it needs to stop.

If you are a tax payer and concerned it will cost too much for this treatment we must look at the math. Each year the tax payers of Saskatchewan pay 14 000 dollars towards my Copaxone, there is a different drug (LDN) which is a fraction of the price and not offered by the neuros. Why? They get kick backs from the drug companies for prescribing the MS drugs. The taxpayers also pay for my neuro appointments, I am sure they are not cheap. If I was to go down hill there will be the cost of home care and eventually I would be a young woman in a nursing home possibly on life support. What would the cost of that be? You the taxpayers are getting ripped off badly. There is a huge market for us to be ill and they (Neuros, MS Society) will do everything in their power to keep is that way. Now that I don't feel the devastating symptoms of MS I am very angry. You tax payers should be just as angry. I will ask that you no longer give the MS Society any funds and I will be doing anything possible to get those funds you have already given in the name of MS out of there. I will be looking into what I and my MSers can do legally as they are no longer representing what they say they do. The CEO of the MS Society in Canada makes over 450 000 dollars a year as well as benefits. If they have an anual meeting it would be held at a place like the Banff Springs hotel. It is time my friends to stop this nonsense and I will do anything in my power to do so.

Now for a positive note, I am going to tour Krakow today. It is a major national holiday to do with their constitution. Euromedic sent me a message stating that today is a holiday and gave me the wiki information on it. All of the trams and businesses have the Polish(Polsky) flag out and it is really a big deal. I cannot wait to go into the Wawel (pronounced Vavel) castle and cathedral. Unbelievable churches and cathedrals here, I can see why communism did not work here these people are very religious. I am very excited to be home but I could use another few days here. Glad I added the extra days for after the procedure when I feel well. It is hard to believe but I am forgetting what it felt like to have MS symptoms. I never thought it would be possible to forget. I also agree with the statement that you don't know how sick you are until you feel better. I am living proof that this procedure is what needs to be done and I am not a quiet reserved person that will let this go. If you have MS or know someone that does please get treatment. I can't say this statement enough.

How to Save Money in Poland

Travel during a national-holiday weekend is a way to save money. May 1 and 3 are both national holidays. With Sunday being between those dates there has been little open here. I did manage to find some things but it wasn't easy. What a great day we had in Krakow, Poland. Found on my MS Forum some great advice that I thought I would share with you on who to call if you have trouble. My GP wrote me a letter of referral and I will use that to claim my trip with Revenue Canada. I will be looking for a vascular surgeon when I return to Canada. Hope they aren't jerks like most neurologists.

Today we began our day like the others with a total pig out breakfast. We decided to travel like the locals do and head on a tram. For 2.50 Zloty you can ride a tram. We went to a massive mall like the West Ed and decided that it would be like North America so we went to Old town. What a great place. There was a cathedral there called St. Mary's, we had a hard time keeping our mouths open when we went inside. The building didn't look like much from the outside but holy cow on the inside it was crazy. We decided there was enought gold in their to solve all of Haiti's problems. There were so many alters that a person didn't know where to turn. We toure around that area for a bit then came back the the hotel for a rest. We set off towards Wawel Casle later on and they have a ton of churches/cathedrals in a 2 block radius. We didn't go in all of them as we are saving some time for tomorrow. There was also a monument for "Katyn", the murder of the 22 000 military elite by the Russians in the 30s. I wanted to see if the cathedral and castle would be open tomorrow. What amazed me is I climbed a huge ramp/stairs going up to the cathedral and castle. This cathedral was where Pope John Paul II was the archbishop. We are going to this castle tomorrow. I was so impressed MS wise that I could climb this huge set of stairs. I left Warren at the bottom and boogied on up. Before I had the liberation I wouldn't have been able to do that, only in my dreams. After Wawel we went for supper at a quaint Russian restaurant. The food was great and it was so nicely decorated. I am back in my room now just after 8, I am getting things organized for my trip back home on Tuesday. I am going to mail some of my clothes back to myself because my bag will be too heavy. Good thing I couldn't buy too many sourveniers as I have no room. Hope all is well with everyone, it is sure great here. What a beautiful country and people. Poland is my new favourite place. With all of the churches here and saints it is no wonder that I experienced a miracle in Poland. I had forgotten my camera and duckie today so I will go back tomorrow to take some pics. Will keep you posted and hope all is well with everyone.

Krakow

Hi again, we arrived in Krakow today to spend three nights here before flying back to Canada. We decided to take the train instead of getting a driver to bring us to Krakow. I decided that we would stay at the same hotel chain the Qubus as we did in Katowice. This hotel is very luxurious and nice. I seem to be more tired today probably because we travelled. I have to keep in mind that I just had vascular surgery 3 days ago. I am still off my modafinil and look forward to going back to Canada and going off Copaxone. I will start a different drug LDN which is generic and hardly costs a thing. The savings on these drugs alone will be over 300/month. It won't take long to pay for my trip to Poland. Maybe this is the reason everyone is fighting getting us liberated, there are billions to be made off of us. The taxpayers of Saskatchewan alone pay 14 000 dollars a year for my Copaxone prescription. I am sure it would be cheaper for us MSers to be liberated at home and taken off these silly drugs that do nothing or kill us. I can't wait to watch the W5 program when I get home they always do such a good job keeping us informed. I need to do some touristy type shopping the next two days and do some touring. I look forward to getting home to my family and friends. Can't wait for that wonderful jet lag feeling. TTYL

Friday

Today started out like all the days with an amazing breakfast at the buffet. Things I noticed this morning was I could type a lot better as the feeling in my right hand is there. I make fewer errors now and am able to go a lot faster. It always felt like I was moving someone else's hand when I typed. I began to realize that I wasn't feeling very well. I seem to have a cold that is in both my head and chest. I went to the mall for a short while then came back to the hotel to rest. I spent the afternoon resting then went for supper with the people liberated on Wednesday and Thursday. Raj, Tony, Myself, Mary (Holland), Ted (New Brunswick) Two other women from the Netherlands (not great with names). We went to Toscana which is in the mall attached to our hotel. The meal was lovely and the company even better.

I realized yesterday that my old habbit of drinking coffee in the evening has to stop. I couldn't get to sleep before 2 am and then I got up a little after 5 feeling "slept out". I went the whole day again without my stimmulant which is amazing for me. I am still awake at 10:30 pm and feel very alert. I am sure I will be able to sleep by midnight tonight as I did not intake any caffeinne this evening.

Tomorrow we will get a ride to Krakow (about 80 km away) and spend 3 days at the Qubus Hotel in Krakow Poland. On Tuesday we travel, leaving Poland at 10 am and arrive in Saskatoon at 7 pm. That will be 3 am Poland time. The trip here was long but I hope the one home does not have delays. Look forward to seeing everyone when i return and will try to keep posting updates as to my progress. I am doing amazingly well for someone that just had vascular surgery 2 days ago. Good night all and will talk to you again from Krakow Poland.

An Energetic Day

Here is the image that I have copied from my MRV. It is kind of confusing but the left side is my right jugular vein, you can see the dark line through the vein. This area caused the reflux of "dirty" blood going back up to my brain. As soon as the doctors ballooned my vein there was no more reflux. They showe me this right on the table. It is good to see that I have a heart, some days I did wonder. LOL

I was very careful today to make sure that I did not do very much. It is just after 11pm the day after my liberation procedure. I arrived at the hotel just after 8 am and had breakfast. I ate at the wonderful buffet and then went up to my room for a while. My brother came with me to the pharmacy which is very close to the hotel. I purchased the Fraxiaprine (blood thinner) that I will take for seven days. This drug is given by injection and will keep me from having a fatal thrombosis. The rest of the day I just kicked around the hotel. I did not take my daily stimmulant today and you would never know it. I have a ton of energy (that isn't fake) and do not feel the need to rest. Warren and I have made a lot of friends here that are sharing the same journey that we are. Raj is here with his wife and young daughter. Raj lives in Hong Kong and is in a wheel chair. He is a young man in his early thirties. As soon as I could get out of bed and go talk to him yesterday I asked how he felt, he said it's like someone turned the lights on. He feels amazing and what is really weird is that he developed a bladder infection. He told me that when he would get an infection before his liberation he would be very bad, maybe even in the hospital. Today he said with the infection he feels better than he did before he had the procedure. We are all so shocked with how great we feel. I am excited to see what happens in the future, just one day has shown me so many changes with how I feel. I will share my day with you.

First of all I have to say that I had my first warm shower this afternoon and felt really well after. For those of you that are unaware, if I had a warm/hot shower I would be disabled (have trouble getting out of the shower). I felt great with no problems lifting my leg out today. While doing the little walking that I did today I noticed I was walking kinda funny. I was putting more energy into lifting my right leg than I needed to, this made me walk funny because it was being lifted so high. It will take a while for me to get used to not needing to lift my right leg so strongly. I also noticed that I am better at typing. I was unable to feel my right hand before the procedure and I really have a lot better sensation. I noticed I could feel my hand right after the treatment on the table. While typing this morning I looked up into the mirror, I saw that my cheeks were kind of rosy. I was worried that I was getting a fever so I touched my face which was cool. After doing that I realized with my vein trouble the colouring of my cheeks had been off, they were just normal now. Another big change is when I swallow now there doesn't feel like there is a big lump in my throat. I can also see, smell, and taste better. I didn't realize that these senses were as bad before. It is kind of the feeling when you are sick and get better, you didn't realize how sick you were.

This evening we went up to the sky bar for coffee and a visit with Raj and his wife. It was so much fun to be able to visit and not feel like you needed to go to bed. Raj said he was able to sit up at the table instead of leaning back on the booth. We are both so happy that I don't think we will get over this feeling. What seems so small to the people that have all of these functions normally is really huge for us MSers. I will now live each day appreciating the small stuff and helping those with MS.

Poland is a beautiful country filled with beautiful (inside and out) people. The women could all be models and the men are very fit. I would recommend anyone come to Poland the dollar (Zloty) here is not very strong against our Canadian dollar. We get 3 Zloty for 1 CDN. I will be able to do a lot more tomorrow and we will go do some touring of this area. On Saturday we will leave for Krakow and tour there for 3 days. Our life is good, we are enjoying our time here but our focus is still on resting. I have to admit it is hard to rest when you feel really energized. Take care all and look forward to seeiing you when I return.

Miracle in Poland

I was involved in a miracle last night and I am still in shock this morning. My brother witnessed this miracle and I am so thankful that I was not alone. I am sure no one would believe what I have to tell. I was at Euromedic Clinic in Katowice, Poland. I arrived approximately 8:30 am with my two friends Raj and Tony. We were all scheduled for angioplasty. When I arrived in the waiting room it was like I was in a dream. I saw pictures of this place on Facebook. I filled in quite a few forms then was taken to a room where I changed and was tended to by two very efficient and beautiful nurses. Shortly after this my hero Dr. Simka came and did a doppler of my neck. Everyone that was there was worried whether they had a problem or not. I was very confident going to Poland that they would find a problem in my neck, I often pointed to the exact spot. Tony and Raj were relieved to find out that they too had something wrong in their veins. I was in my room for a while and I was having a great deal of trouble staying awake. I hadn't taken my upper (Modafinil) that morning. This pill helps me to be awake without being addicting or give a drug hangover. By evening I am able to sleep. Not taking the pill made my wait very difficult as I couldn't stay awake. I am not sure of the order but I went into the theatre last at about 5:15 pm local time. I hopped up on the table and the nurses were trying to get me to move my head up more towards the top. Of course my Polish isn't very good so I was not understanding very well. They put a surgical wash on me and oxygen catheter in my nose. I was given something in my IV that was either dye or a relaxant. I never felt anything when they said you may feel a burning or pressure but I did not. When they were done about 20 minutes later they showed me what they did on the screen in the OR. The doctor was very down-to-Earth, not like our North American doctors (arogant). He showed me that me vein had reflux (blood going back into the brain) in my right Jugular. Of course this was the exact spot I have been pointing to the last 6 months when the Zamboni theory came out. Go figure, a patient actually knows their own body. As soon as I was done my operation the beautiful anesthitist talked to me and she could tell that I was much better. They wheeled me back to my room and I slid into my bed. I was ready to do cart wheels down the hall. Not allowed, I had to lay still for 5 hours. My brother Warren came in and he was shocked at how I was doing. I told him how great I felt, Warren said that he was more stoned after his angioplasty for arterial blockage. He then told me that I seemed more dopey before the procedure. For once in my life I did what I was told and stayed in bed. About 2 or 3 in the am a nurse let me out and I went to the washroom. I was unable to go back to sleep because I had this crazy energy that I haven't felt for years. I had my daughter's IPod so I put it on and started listening to tunes. I couldn't sit still so I got up and danced in my room at about 4 in the am. I am sure the Polish roommates that I had thought I was crazy. They were both a little more tired because they had stents put in and there MS was more advanced than mine. I may not look like I had MS but I sure felt like I did. Now that feeling is but a distant memory and one that I will gladly forget. Sorry for the lengthiness but i am so excited. I would like to thank all the people that put me in their prayers, that was very instrumental in my having this success. This is in memory of my dad, Peter Stefanuk 1932-2000. He helped me get here and is my best MS friend. Bless you all, I believe in miracles.

Today is the day

Here I am at my computer with nothing but excitement building. I had a great sleep last night, not too long but rested. I will be used to the time change just when I need to return back to Canadian time. Spent time with tests (MRV, eye test) yesterday. Warren and I went to a huge mall and couldn't believe how many stores there were there. My adapter purchased at "The Source" in Lloydminister SK was the wrong one, couldn't believe it when I got here. We went to the mall looking for an alarm for Warren (no clocks in rooms here) and an adapter for me. We were directed to a store called Saturn and took us a while to find it. The Saturn chain is very large, something like a future store. Poland has come out of the Communist era quite nicely. It is neet to see a huge mall (City Centre) in the midst of old Communist structures. The people are nice and helpful here of course they laugh at my 'weirdness'.
The ability to talk to anyone is a trait that I have proudly learned from my dad. When I was a young teenager I would be embarrassed at how he would talk to people he didn't know. I do this same thing which I know makes my own children shake their heads in embarrassment. I must admit that the ability to engage in conversation with anyone is a trait I proudly take from my dad.
I know that my dad is with me on my journey here. I feel such a calmness and that I am doing the right thing. All of the signs have pointed me in this direction. I have such faith in the people doing the procedure and my ablility to heal. All that has happened in my life is for a reason and I use each new experience as education. No matter what happens today (whether I feel better or not) I have no regrets! I have learned who really cares about me as well. True friends show themselves when you need them. All the best to my friends and family and fellow MSers. What a beautiful world.

The Last Supper

Hi all, we went to have the MRV tonight at a hospital that is quite far from the Qubus hotel. There was just Tony from the UK and I going this evening. This test is done in an MRI but it is of the veins. I really don't like MRIs, I have had two previous to this evening. I must be honest that I close my eyes when they start to push me in. I was given ear plugs that were very good but it is still very load in the machine. This test was not a typical MRI as you had to do some breathing. The tech asks you to breathe in, out then push. This must be to make the veins pop for the pictures. You have to hold your breath for 15 seconds and I was very thankful that I had quit smoking years ago. It is 11:30 pm now and I am going to have a good sleep tonight. I made sure to not rest today so I could get on the Poland time zone. My brother Warren seems to be enjoying his time here as well. We both love the country and the people. Don't let anyone tell you that Poland is a third-world country. It is a beautiful place full of wonderful people. We got back to the hotel and had another wonderful meal at the restaurant here. I called this post the last supper because I won't be eating tomorrow. Don't think I will waiste away though lots in storrage. Every day I am thankful for my stubborness and my family's support (Mom, Jim, Tavia, Teal and Warren) for helping me get here. For all of my friends and family that pray for me and offer encouragment. I am one of the luckiest people in the world and what makes that great is that I know it.

Found a computer

I cannot say enough good things about the people that work at the Qubus Hotel in Katowice. One of the front dest guys came to a Kiosk with me to be a translator. I will for sure have to leave him a good tip. The money here is the Polish Zloty. It cost me 38 dollars CDN to purchase 100 Zloty. Warren (my brother) and I had a gourmet meal last night for 98 Z for both. In Saskatchewan that would be like eating at John's Prime Steak House in Saskatoon. Very high end restarant. Looked at the mall connected to my hotel. A bottle of designer perfume is 100 Z which is not really that much at home. Can't wait to feel well and be able to tour around more post liberation treatment. I am having a great time learning a new country and making a lot of friends. I really feel a connection with my MS friends here. What a bond we all have. In speaking with my driver he said the most people they have here are from Holland. Today I drove with Inga as she was going to her procedure at the hospital. She was from Holland and is in a wheel chair with total paralysis on her right side. How fortunate am I to have this opportunity before I got to this stage. Every night I make sure that I give thanks for all that I have. To even have something positive to look forward to regarding my help is huge. I am so very thankful for the Polish people and how they have welcomed us into there country. Talk to you later. Don't forget I am still incredible jet lagged and I have MS brain fog. A lot of my posts are probably the ramblings of a crazy lady.

Testing Day

Met some MS friends today. Tony and Raj. Have a real connection with them. So glad to be here. I need to get on this time zone as my travelling day was gruelling. 28 hours long many countries and no sleep. Having trouble with my adapter because the people at the source in Lloydminster are really dumb. Don't have a lot of time on my computer left. I had my eye test looking for Optic neuritis today. Mine wasn't too bad but there is some there. Later an MRI(MRV) of my veins then tomorrow all day at hosp getting doppler and liberation treatment. Miss my family and friends at home very much but I have made a great connection with people here. Next time you see me at home I hope I am better. God Bless you all.

I'm Here

Tons of hours of travel and no sleep for 24 hours is not the best thing for an MS patient but here I am in Katowice Poland. The hotel is nice and the people are great. Can't believe that I am still able to stand. We arrived in Frankfurt an hour later than we should have due to a delay in Calgary. Did not make our connecting flight then the gong show began. They put us on a flight to Vienna Aus. with a different airline then Vienna to Krakow then a 40 min drive to Katowice. We had a wonderful supper then we are both in our rooms going to sleep probably til tomorrow morning. My feet are terribly swollen and I must rest. I am too excited to realize why I am here. Will need to be in lobby for 9 am as I have an eye test in the afternoon I have an MRV which is an MRI of the veins. Wednesday I have a doppler ultrasound and after that I have the procedure. I am so tired but really happy to be here. I thought this day would never come.

Getting Ready

Of course not having a lot of time to get ready may be a good thing for me as I don't have a lot of time to panic. I have so much to do and no time to do it. I feel like I am in a dream and I don't think I will realize this is happening until I get there. I am currently in Swift Current Saskatchewan at a dance competition with my youngest daughter. It is actually helping me to not panic because I am far removed from home. My mom is coming to my messy house on Monday to help look after the girls so Jim can farm. I hope it isn't too much for her to be there. Ten days is a long time to expect someone to be at your place when you aren't there. I will arrive home late Saturday night after a gruelling day and long drive home. It will be then that I will start to pack for my trip to Poland. The only problem is that I leave very early in the morning to be in Saskatoon for my plane. I guess if I don't sleep Saturday night I will be able to sleep on the plane from Calgary to Frankfurt 9 hours or so. Can't wait to get to Europe amid the drama of the volcano in Iceland. I just have such a good feeling that I will get to Poland and that they will find the problem in my veins. I am so truly thankful that I have this opportunity and I have the support of my family. I am also very thankful that my brother is coming along.

How it started.

I am very lucky to have family that supports my journey for wellness. My husband Jim has been wonderful since I became ill. I feel so bad that my illness has caused so much stress in our lives. If it wasn't for Jim I don't think I would have been able to make it. I understand that suicide is big with MS patients and I know Jim is a big reason that I am still here.

August 28, 2008 I went to emergency at RUH in Saskatoon with what my GP said was stroke-like symptoms. He assured me that he didn't think it was a stroke but knew something was up. Jim had just started a very late harvest and I called saying I had to leave for Saskatoon. Of course more stress making pressure for him to get out from under the combine, shower, drive to Rosetown then drive me to Saskatoon wondering what is wrong.

Immediately I was taken into emergency (no waiting room for me) I saw a neurologist resident then the chief resident came in followed by the head neurologist. I had about 30 tubes of blood taken and sent for a CT scan. Coming out of the scan the chief resident told me they saw white spots in the brain these could be old strokes or MS legions. I immediately turned to Jim and said Oh #*@!, it's MS. What took us so long to figure out it was MS? My dad died from this terrible disease. Not over yet need to officially rule out stroke so more trips to the city to go through the stroke clinic. Once stroke ruled out I finally had an MRI in December to get a better look at my brain. Hope was dashed in January when my official MS diagnosis came. Jim and I both in the neurologists office and she asked me if I had headaches, she asked this same thing at the stroke clinic and I had said no. To that question about headaches I said no but I have incredible pressure on my neck (right side) and it feels like a 200 pound man is sitting on my neck. She told me that this had nothing to do with neurology and to tell her something she can deal with. Later in June I gave her the same symptoms and she freaked on me, of course these were never recorded and I look back now thinking she must have known about the Zamboni theory then and thought I was fishing or something.

November 2009, not feeling too well and sleeping late 6:50 I get a call from my friend that woke me up. She said watch Canada AM there is something big about MS, something to do with the veins in the neck. I watched the blurb and then couldn't wait to see the full program on W5. Told Jim this is it because that has been my biggest complaint was my neck and the the theory made sense to me. I felt vascular problems in my neck and down my arm. Immediately on Monday I thought where could I go to get this done? I thought the Mayo Clinic in Rochester Minn, Phoned and they said they would have nothing to do with a vascular problem if I had MS and would not be able to go there. I couldn't believe my ears. Looked at the W5 website and started e-mailing. Joined Facebook CCSVI and TIMS (this is ms) What a lot of work I did.

A ton of new friends later I had a huge network at my fingertips. I had e-mailed Dr. Simka in Poland and didn't hear anything. I wanted my brother Warren to look into going to China but that was too difficult. People were getting dates in Poland and I wasn't hearing anything back from them. I learned on tims that Bulgaria was beginning so I immediately e-mailed. Then I thought I should email Poland and complain that people that e-mailed after me are getting dates. Shortly after Bulgaria said i had June 2010 and then I got one from Poland saying October 2010. Now what? I emailed Poland said that I would take 2010 and told Bulgaria I would go there but summer would be better. I told Poland if they had any cancellations I would take them. I kinda wanted to go to Poland because they had done more procedures there and Bulgaria was just beginning in April. On the 8th of April I got an email from Euromedic that I could get there on the 26th and have the procedure on the 28th. WHAT? My wishes came true! After talking to Jim he said for sure go and then there is more stress on him. Seeding is coming.

Not only Jim has helped me but so has my mom. Just having surgery in January she is coming to help watch my daughters while I am gone and Jim seeds. Next Blog will be about my getting ready.