Friday, April 30, 2010


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.

Thursday, April 29, 2010

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.

Tuesday, April 27, 2010

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.

Monday, April 26, 2010

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.

Friday, April 23, 2010

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.