Today is my 2 week birthday :) I think jet lag is pretty much behind me. I slept in big time this morning, and I really slept!! We had our 1, 3, & 6 year old grandsons here for the afternoon. We walked to the store (slowly) for slushies. I had a blanket with me to sit on so we took a little break on the way back.
One thing I really noticed, is when I used to wear out, I had to lay flat every 1/2 hour at least, just flat because my back and neck would be hurting so much. Now just sitting down for a few minutes does the trick!
I am going to keep up with posts the best I can, but I'm seriously going to take it easy and just 'go with the flow' for the next couple of weeks. I have to learn to listen to entirely different messages from my body, and give my body time to heal.
Guy wanted to take me to pick out a new golf driver, then mentioned maybe that's not a good exercise for me just yet, because of the surgery and the stent. I think he may be on to something so I'm going to try some yoga and palades. I did buy a wii fit (my grandsons think I'm their hero now) so I'll try that by starting slowly. I never realized how atrophied some of my major muscles had become.
Oh, and I also noticed my posture is much better, more each day. My shoulders used to roll forward and Guy felt I was in danger of developing a dowager's hump, but for the first time in many years, I don't have to consciously and purposely force my back straighter and shoulders back.
Friday, June 25, 2010
Thursday, June 24, 2010
follow up care
I had heard rumors that follow up care was going to be an issue for those of us who went abroad for treatment but, I honestly couldn't believe it.
I went to my dr. yesterday, he wasn't too impressed that I had treatment in Poland, but he did write my my rx for blood thinners and requests for my follow up doplar on my left jugular, and for my thyroid (they found a cyst in poland). His nurse tried for 20 min. to book my appointments with the imaging lab and gave up in frustration. She was talking to me at the same time and telling me what she was being told... "we do not scan jugular veins!" I said nonsense, they do this for dialasys patients and others all the time.
she finally gave up in frustration, gave me the forms and the number to call them myself. I drove home infuriated and disgusted that I had to fight one more battle. Believe me I was NOT impressed. I called the number, and when I started to get the same nonsense I interrupted the woman on the line.
"this is NOT for dx, it's a post surgery follow up!" Then I got my appointments.....phew!! All the time things were running through my head such as if you don't give me an appointment I want the reason in writing, is this grounds for a law suit....all those fighting things.
the test will be 2 weeks later than I was supposed to have it, but at least I have it for now. I hope that chatting with the radiologist will spread more information to that area of professionals, and get them to honestly look at what we're fighting for.
I went for a thyroid blood test before I saw the dr. and the lab tech that drew my blood was so supportive. She's looking out of country for treatment for something else. What has this country come to that we have to flee to europe and all over the world to get the care we paid taxes for all these years?
I want to take a moment to also encourage and thank those who come to our political meetings, who are very advanced and not in good health. Your bravery is exceptional! I understand how hard it must be to watch others regaining functions when you can't have the treatment yet. But believe me, your efforts are so very important, and make a HUGE statement in the fight for liberation. I can't thank you enough!
I went to my dr. yesterday, he wasn't too impressed that I had treatment in Poland, but he did write my my rx for blood thinners and requests for my follow up doplar on my left jugular, and for my thyroid (they found a cyst in poland). His nurse tried for 20 min. to book my appointments with the imaging lab and gave up in frustration. She was talking to me at the same time and telling me what she was being told... "we do not scan jugular veins!" I said nonsense, they do this for dialasys patients and others all the time.
she finally gave up in frustration, gave me the forms and the number to call them myself. I drove home infuriated and disgusted that I had to fight one more battle. Believe me I was NOT impressed. I called the number, and when I started to get the same nonsense I interrupted the woman on the line.
"this is NOT for dx, it's a post surgery follow up!" Then I got my appointments.....phew!! All the time things were running through my head such as if you don't give me an appointment I want the reason in writing, is this grounds for a law suit....all those fighting things.
the test will be 2 weeks later than I was supposed to have it, but at least I have it for now. I hope that chatting with the radiologist will spread more information to that area of professionals, and get them to honestly look at what we're fighting for.
I went for a thyroid blood test before I saw the dr. and the lab tech that drew my blood was so supportive. She's looking out of country for treatment for something else. What has this country come to that we have to flee to europe and all over the world to get the care we paid taxes for all these years?
I want to take a moment to also encourage and thank those who come to our political meetings, who are very advanced and not in good health. Your bravery is exceptional! I understand how hard it must be to watch others regaining functions when you can't have the treatment yet. But believe me, your efforts are so very important, and make a HUGE statement in the fight for liberation. I can't thank you enough!
Tuesday, June 22, 2010
11 days post liberation
Hello everyone,
I wasn't sure what to write at this point, but thought I should make a better effort to start somewhere. We went to Poland, everyone there was amazing from Kate and Chris to Dr. Kostecki. Poland is a beautiful country and the people are honest, hard working, hospitable and caring. The hospital was spotless and the nurses came immediately if they were called.
The procedure was effortless honestly. I was afraid that because I had gone deaf in my left ear, it would hurt when it was ballooned, but no, it was....as one friend put it....more comfortable than most dentist appointments. My doplar showed only a small stenosis on the left, but a faulty valve that seriously obstructed blood flow. They tried to balloon it but it wouldn't stay open, so I opted for a stent. I didn't feel any immediate effects as I had hoped I would. I felt less disappointed in the progress and more worried that I had let all my supportive friends and family down. Not to worry.
The next morning I was chatting with a friend back at the hotel, out on the patio. We had a water, chatted, had a coffee and chatted some more. About an hour and 1/2 later Mary looked at me and said, "you know, usually by know you've hobbled off to the bathroom about 3 times!" Wow, I hadn't even noticed. My first real improvement! I was always aware of how much that ruled my life, living from washroom to washroom. Planning shopping trips around their locations and how much energy I would have to make it there and back before it was too late. Now that I'm not experiencing so much bladder urgency I have to say, it's a wonderful, freeing feeling!
Then I noticed that my right hand (both hands have been hopelessly numb for over 5 years now) felt less numb and I have better fine motor skills with it. Slowly over the next few days my hearing improved quite a bit (still not perfect) and the room stopped spinning when I got up or rolled over in bed. Hubby swears that my color is 'much pinker' and that my eyes are shinging more. My leg only drags a bit when I've over done it and I'm over tired. Believe it or not, I actually wore heals to church and then to a meeting with our minority leader MP! I wore them to the meeting as a statement as to what a difference even the little pleasures in life mean to us, and how effective the procedure can be.
I believe the MP we met with is honestly sympathetic and outraged that we are having to leave Canada for such a promising and simple procedure. I went through the procedure rather pragmatically, not expecting too much, just hoping to stop progression. Seriously, the improvements I have had can't be 'placebo'! so what....i don't want to pee all the time so I don't? I wish, it never worked for me before!
I had read where others said they weren't used to feeling tired instead of fatigued. I get it now....tired, hard to recognise. I even yawn, I haven't done that in a long time. We spent time with our grand children the other day and I actually felt TIRED! Not that mind numbing, room spinning, every cell in the body hurting fatigue, but tired!
I will keep fighting for the procedure to be available for everyone with MS. No more friends should be left to suffer hopelessly, or worse yet, die. This is a serious violation of human rights and one that needs to be stopped. Follow up care is now a concern. I hope I won't have a problem with the one month doplar to check on stent placement and blood flow, but I guess I won't know until I try.
I'll up date again when I have more news. I had such a magical time in Krakow and wanted to write about that too. If I go back for a 3 month check up, I'm taking an extra suitcase to bring back shoes!! Jet lag is the worst thing I've had to deal with physically. Breaking the trip up more if possible is advisable. I found the 9 plus hour flight tough mostly because I started to have a panic attack that I wasn't moving as much as I should and would develop blood clots. Thank goodness for Guy calming me down and keeping me sane. Oh did I mention, he spent his 55th b day taking care of me in the hospital, then going back to the hotel to phone and write to everyone that I was ok.
Look out world, here we come!
I wasn't sure what to write at this point, but thought I should make a better effort to start somewhere. We went to Poland, everyone there was amazing from Kate and Chris to Dr. Kostecki. Poland is a beautiful country and the people are honest, hard working, hospitable and caring. The hospital was spotless and the nurses came immediately if they were called.
The procedure was effortless honestly. I was afraid that because I had gone deaf in my left ear, it would hurt when it was ballooned, but no, it was....as one friend put it....more comfortable than most dentist appointments. My doplar showed only a small stenosis on the left, but a faulty valve that seriously obstructed blood flow. They tried to balloon it but it wouldn't stay open, so I opted for a stent. I didn't feel any immediate effects as I had hoped I would. I felt less disappointed in the progress and more worried that I had let all my supportive friends and family down. Not to worry.
The next morning I was chatting with a friend back at the hotel, out on the patio. We had a water, chatted, had a coffee and chatted some more. About an hour and 1/2 later Mary looked at me and said, "you know, usually by know you've hobbled off to the bathroom about 3 times!" Wow, I hadn't even noticed. My first real improvement! I was always aware of how much that ruled my life, living from washroom to washroom. Planning shopping trips around their locations and how much energy I would have to make it there and back before it was too late. Now that I'm not experiencing so much bladder urgency I have to say, it's a wonderful, freeing feeling!
Then I noticed that my right hand (both hands have been hopelessly numb for over 5 years now) felt less numb and I have better fine motor skills with it. Slowly over the next few days my hearing improved quite a bit (still not perfect) and the room stopped spinning when I got up or rolled over in bed. Hubby swears that my color is 'much pinker' and that my eyes are shinging more. My leg only drags a bit when I've over done it and I'm over tired. Believe it or not, I actually wore heals to church and then to a meeting with our minority leader MP! I wore them to the meeting as a statement as to what a difference even the little pleasures in life mean to us, and how effective the procedure can be.
I believe the MP we met with is honestly sympathetic and outraged that we are having to leave Canada for such a promising and simple procedure. I went through the procedure rather pragmatically, not expecting too much, just hoping to stop progression. Seriously, the improvements I have had can't be 'placebo'! so what....i don't want to pee all the time so I don't? I wish, it never worked for me before!
I had read where others said they weren't used to feeling tired instead of fatigued. I get it now....tired, hard to recognise. I even yawn, I haven't done that in a long time. We spent time with our grand children the other day and I actually felt TIRED! Not that mind numbing, room spinning, every cell in the body hurting fatigue, but tired!
I will keep fighting for the procedure to be available for everyone with MS. No more friends should be left to suffer hopelessly, or worse yet, die. This is a serious violation of human rights and one that needs to be stopped. Follow up care is now a concern. I hope I won't have a problem with the one month doplar to check on stent placement and blood flow, but I guess I won't know until I try.
I'll up date again when I have more news. I had such a magical time in Krakow and wanted to write about that too. If I go back for a 3 month check up, I'm taking an extra suitcase to bring back shoes!! Jet lag is the worst thing I've had to deal with physically. Breaking the trip up more if possible is advisable. I found the 9 plus hour flight tough mostly because I started to have a panic attack that I wasn't moving as much as I should and would develop blood clots. Thank goodness for Guy calming me down and keeping me sane. Oh did I mention, he spent his 55th b day taking care of me in the hospital, then going back to the hotel to phone and write to everyone that I was ok.
Look out world, here we come!
Saturday, June 12, 2010
First Day Liberated
Not sure how well I'll do up dating, but I can always refine things later. I had a rough night in the hospital mostly because we weren't allowed to sit up or even lay on our sides for 12 hours. ewwww bed pans are not fun! The entire procedure took less than an hour and wasn't at all painful. I had the left Jugular ballooned but it wouldn't stay open, so I went for the stent. It was blocked (in their words ....) very very very bad. The right had good enough flow and they couldn't get into my azygos vein to balloon but because the wire went in they felt it had flow as well.
Let's see, I did notice my bad leg is now my good leg. My friend Mary pointed out that I visited for quite some time this morning and even had coffee without having to run to the bathroom! hmmmmm may be able to actually shop without extra clothes weighing me down and running from bathroom to bathroom, that would be impressive. my right hand is stronger, but still some numbness. I had one heck of a nap this afternoon for an hour, I still need to catch up on rest.
There is a wedding in the hotel tonight so the restaurant is closed to us. It's so very hot outside but I guess we'll have to find someplace to eat so I'll get to see how my heat coping is now. I have a slight improvement in my deaf ear so far, but I'm hoping the hearing will return as I rest.
We met Bill and Sue from BC, Mary from Ireland, and Lynn and John from Scotland as well as a wonderful couple from Bulgaria who were just here for a one month check up. There is quite a bond between we liberati.
We have to move rooms due to a wedding going on outside our window so i'll fix this blog as soon as I get a chance, possibly tonight. I'll add whatever I can figure out is new as I learn it and as I catch up on rest. Guy promised our grandsons a 'brand new memmere' so I guess I better get at the healing part eh?
Let's see, I did notice my bad leg is now my good leg. My friend Mary pointed out that I visited for quite some time this morning and even had coffee without having to run to the bathroom! hmmmmm may be able to actually shop without extra clothes weighing me down and running from bathroom to bathroom, that would be impressive. my right hand is stronger, but still some numbness. I had one heck of a nap this afternoon for an hour, I still need to catch up on rest.
There is a wedding in the hotel tonight so the restaurant is closed to us. It's so very hot outside but I guess we'll have to find someplace to eat so I'll get to see how my heat coping is now. I have a slight improvement in my deaf ear so far, but I'm hoping the hearing will return as I rest.
We met Bill and Sue from BC, Mary from Ireland, and Lynn and John from Scotland as well as a wonderful couple from Bulgaria who were just here for a one month check up. There is quite a bond between we liberati.
We have to move rooms due to a wedding going on outside our window so i'll fix this blog as soon as I get a chance, possibly tonight. I'll add whatever I can figure out is new as I learn it and as I catch up on rest. Guy promised our grandsons a 'brand new memmere' so I guess I better get at the healing part eh?
Thursday, June 10, 2010
Liberation Day!
Well today's the day! I finally slept through the entire night, so I'm hoping I'm strong enough to fly through the procedure. I met up with 4 others, and one more from Bulgaria who was here for a check up. Very fun group, very supportive. It's wonderful to be surrounded by people who are going through all the same things, all the same questions, all the same worries.
Dr. K is a very nice, compassionate man. We've had our doplars and our MRI's now, today is the big day that we go for a venogram and procedure. I'm worried about the venogram since I had a slight reaction to contrast 15 years ago when I had a CAT scan. I think I may ask about just going straight for the procedure.
The doplar showed that I have a slight stenosis on the left side (which is why my right leg is the worst) but it also has a pressure of 100 when it should be at least 500. The right side also has a pressure gradient of only 120 so I asked if it could be a membrane or valve issue. He said yes, so that would be an easy fix. I don't know what showed up for my Azygos vein since I couldn't open the MRI file on the disk I was given.
During a neuro consult, I was asked what I hoped to see the most from this procedure. I told him my wish list was: first....fatigue gone, second....hearing in my left ear, Third....feeling in my hands, and the rest would all be just a wonderful bonus.
I called my mom last night (her day) and I was so tired I could tell she was worried. I emailed all my children and sent hugs to all the grand babies, I miss them all so much. I woke up with a renewed sense of hope and faith that things will work out today, jet lag can be so horrible on your frame of mind.
i have to eat and then go on starvation for the rest of the day, so off I go. I will blog as soon as I can. The heat and fatigue were such serious issues for me the past 6 days, but I'm getting a handle on it all. Love to everyone...blog to you soon!
Dr. K is a very nice, compassionate man. We've had our doplars and our MRI's now, today is the big day that we go for a venogram and procedure. I'm worried about the venogram since I had a slight reaction to contrast 15 years ago when I had a CAT scan. I think I may ask about just going straight for the procedure.
The doplar showed that I have a slight stenosis on the left side (which is why my right leg is the worst) but it also has a pressure of 100 when it should be at least 500. The right side also has a pressure gradient of only 120 so I asked if it could be a membrane or valve issue. He said yes, so that would be an easy fix. I don't know what showed up for my Azygos vein since I couldn't open the MRI file on the disk I was given.
During a neuro consult, I was asked what I hoped to see the most from this procedure. I told him my wish list was: first....fatigue gone, second....hearing in my left ear, Third....feeling in my hands, and the rest would all be just a wonderful bonus.
I called my mom last night (her day) and I was so tired I could tell she was worried. I emailed all my children and sent hugs to all the grand babies, I miss them all so much. I woke up with a renewed sense of hope and faith that things will work out today, jet lag can be so horrible on your frame of mind.
i have to eat and then go on starvation for the rest of the day, so off I go. I will blog as soon as I can. The heat and fatigue were such serious issues for me the past 6 days, but I'm getting a handle on it all. Love to everyone...blog to you soon!
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