It doubles my resolve to do everything in MY power to stay well, and reinforces my choice to stay away from the drugs. It also pleases me to know I'm doing my tiny little bit to not line their overstuffed pockets any more than they are already. It galls me that one day I might end up desperate enough to say yes to them. I'm not saying it would be weak of me if I choose the drugs in the future, for example,if I was in pain I'd probably take any damn thing to make it stop. But I'll not dwell on that. I'm not in pain.
x
Thursday 26 January 2012
stay off of the gravy train
I just read that the MS gravy train is worth over $8 billion a year to the pharmaceutical industry! 8 billion dollars to make a bunch of people more comfortable, but not better! I really don't see them coming up with an effective cure any time in the near future!!
Monday 23 January 2012
happy anniversary! :/
it has now been a full year since my current relapse began. It is also my son's 16th birthday (that's how it is so easy for me to remember the exact date my relapse started!)
I'm completely at peace with my MS now. No more dark ad scary nights wondering what will become of me. It's like this - we all get old and sick and immobile at some point in our lives. My life is no more or less predictable than it was before my MS became apparent. So I'm not going to waste time and energy any more on what might be, or indeed, what might have been...
What it has done is to force me to rethink things about myself, and to relearn certain ways of living my life (still an ongoing process). It has helped me to see the value of the "right now". I'm not sure I'm much less of a time waster yet, but I think I am better than I was. I certainly do not take for granted what mobility I have right now. I really appreciate it when my legs are co-operating, and often it's quite funny when they are not! The fact that I have not been left with any really uncomfortable symptoms is a real blessing, I know it could easily have been the case, quite randomly, that I coul have been left with nerve damage that would cause permanent pain. That, I think, would be very difficult to maintain a positive outlook with.
So I'm now looking at what symptoms I still have as likely to be permanent (though there might still be improvement over the next 6 months)...this is what I'e been told to expect.
Oh, and I had my appointment with the MS nurse a few days ago and told her I didn't intend to start on the drugs. She completely had my number! She said she didn't think I would go for it, and was completely respectful and supportive of my decision. I was really grateful for that. I know the decision I have arrived at is the right one for me. It was like a weight lifting off me when I finally committed to the decision.
Had a lovely meal this evening for aforementioned son's birthday. We went to a tapas bar, and I could eat enough from the menu not to go hungry...hooray for Mediterranean restaurants who insist on using extra virgin olive oil! :D
x
I'm completely at peace with my MS now. No more dark ad scary nights wondering what will become of me. It's like this - we all get old and sick and immobile at some point in our lives. My life is no more or less predictable than it was before my MS became apparent. So I'm not going to waste time and energy any more on what might be, or indeed, what might have been...
What it has done is to force me to rethink things about myself, and to relearn certain ways of living my life (still an ongoing process). It has helped me to see the value of the "right now". I'm not sure I'm much less of a time waster yet, but I think I am better than I was. I certainly do not take for granted what mobility I have right now. I really appreciate it when my legs are co-operating, and often it's quite funny when they are not! The fact that I have not been left with any really uncomfortable symptoms is a real blessing, I know it could easily have been the case, quite randomly, that I coul have been left with nerve damage that would cause permanent pain. That, I think, would be very difficult to maintain a positive outlook with.
So I'm now looking at what symptoms I still have as likely to be permanent (though there might still be improvement over the next 6 months)...this is what I'e been told to expect.
Oh, and I had my appointment with the MS nurse a few days ago and told her I didn't intend to start on the drugs. She completely had my number! She said she didn't think I would go for it, and was completely respectful and supportive of my decision. I was really grateful for that. I know the decision I have arrived at is the right one for me. It was like a weight lifting off me when I finally committed to the decision.
Had a lovely meal this evening for aforementioned son's birthday. We went to a tapas bar, and I could eat enough from the menu not to go hungry...hooray for Mediterranean restaurants who insist on using extra virgin olive oil! :D
x
Saturday 14 January 2012
just say no!
ok, I have made my decision about whether to embark upon a course of pharmaceutical drugs to modify the course of my MS. I'm off to see the MS nurse on Friday to tell her....
......and the winner is
.......I am NOT going to take them, at least not for now, and maybe not ever.
The reasons are many and various, and arriving at this decision has taken a whole lot of research, soul searching and agonising. I really considered the drug thing. I read all the pamphlets, I researched often primary sources to really make an informed decision. I even had decided to have a blood test for Tysabri (the monthly 3 hour trek for a blood infusion), and had agreed to start a course of Copaxone (the least offensive/effective in their armoury).
....But then I allowed gut instinct to change my mind. I'm not ready to start on this course of meds, but if I don't start now I will fall out of the stringent N.I.C.E criteria, and no longer be eligible for the meds on the NHS.
So my reasoning was to give the meds a go whilst I can. But I was feeling really unhappy about it, it just didn't feel right for me. Then I read a forum about the MS drugs and people's experiences, and there was good and bad stuff said about them in probably equal amounts, but seeing the pros ad cons argued out was enough for me to have an overwhelming certainty of what I wanted to do.
To be honest, although the nurses and doc were keen to reassure me it was my choice, I felt under pressure to start on these meds now, even though I didn't want to. I think that it a really negative reason for doing something I really have misgivings about.
I am prepared to accept the consequences of my decision, but hey, if it is my Wyrd to end up in a wheelchair then so shall it be whatever I do, and believe me I am doing everything I believe will actually help me cure myself - not just quieten the symptoms....so in doing this, I am throwing myself into dedicating my lifestyle to getting well, and staying well.
So far so good though - about 1 1/2 stone lighter than I was, and feeling really healthy (not counting the MS!). Even if I don't manage to change enough to eat myself well, it's doing me so much good.....now I have to get more on it with the exercising..it's lapsed a little over the winter months, but I'm ready to go...just waiting for my tattoo to properly heal before I jump into a swimming pool (grubby little things lurk in pools dont ya know!)
so now I need to find a pic of my tattoo (mine is the smaller of the two feet!)
x
......and the winner is
.......I am NOT going to take them, at least not for now, and maybe not ever.
The reasons are many and various, and arriving at this decision has taken a whole lot of research, soul searching and agonising. I really considered the drug thing. I read all the pamphlets, I researched often primary sources to really make an informed decision. I even had decided to have a blood test for Tysabri (the monthly 3 hour trek for a blood infusion), and had agreed to start a course of Copaxone (the least offensive/effective in their armoury).
....But then I allowed gut instinct to change my mind. I'm not ready to start on this course of meds, but if I don't start now I will fall out of the stringent N.I.C.E criteria, and no longer be eligible for the meds on the NHS.
So my reasoning was to give the meds a go whilst I can. But I was feeling really unhappy about it, it just didn't feel right for me. Then I read a forum about the MS drugs and people's experiences, and there was good and bad stuff said about them in probably equal amounts, but seeing the pros ad cons argued out was enough for me to have an overwhelming certainty of what I wanted to do.
To be honest, although the nurses and doc were keen to reassure me it was my choice, I felt under pressure to start on these meds now, even though I didn't want to. I think that it a really negative reason for doing something I really have misgivings about.
I am prepared to accept the consequences of my decision, but hey, if it is my Wyrd to end up in a wheelchair then so shall it be whatever I do, and believe me I am doing everything I believe will actually help me cure myself - not just quieten the symptoms....so in doing this, I am throwing myself into dedicating my lifestyle to getting well, and staying well.
So far so good though - about 1 1/2 stone lighter than I was, and feeling really healthy (not counting the MS!). Even if I don't manage to change enough to eat myself well, it's doing me so much good.....now I have to get more on it with the exercising..it's lapsed a little over the winter months, but I'm ready to go...just waiting for my tattoo to properly heal before I jump into a swimming pool (grubby little things lurk in pools dont ya know!)
so now I need to find a pic of my tattoo (mine is the smaller of the two feet!)
x
raisin hell!
they sneak oil into raisins and they don't even tell you about it.....aaaaaargh!
I usually buy raisins from my health food shop. The ingredients are listed (in order of highest quantity first).. "raisins". Nothing else. This is a good thing, fat-free, sweet and nutritious, what's not to like about raisins?
Well, hidden oil content, as it turns out! Often it's palm oil too (forbidden fruits for me)...
I was in the local supermarket, getting some supermarkety things. We'd run out of raisins, so rather than getting them from the health food shop, I grabbed a packet off the shelf. Because I was in "supermarket mode" at the time, I flipped over the packet and read the ingredients..."raisins, vegetable oil"! Glad that I'd bothered to check, I put the packet back and looked at another type - same thing, then another...all of the packets of raisins, sultanas and currants had oil listed as an ingredient, sometimes specifying it as palm oil!
I asked at the health food shop and they couldn't even tell me about the raisins they were selling (gave me the "nutter alert - let's just smile sweetly at her" look).
This has really got me ruffled, it has implications for many foods I can still have! - such as my beloved Spiced Apple Crimble cake!
So far, I've trawled the iternet, and all I can find, in terms of suppliers, is in USA (there's a surprise!)I also found a recipe for making your own raisins in a dehydrator (which I don't own).
This is very depressing...and it's so far the biggest challenge to my resolve to stick to my diet in a kosher way. It's much harder to avoid raisins than resist something delicious like chocolate! All the "healthy" stuff you can buy, all the sugar free desserts!
x
I usually buy raisins from my health food shop. The ingredients are listed (in order of highest quantity first).. "raisins". Nothing else. This is a good thing, fat-free, sweet and nutritious, what's not to like about raisins?
Well, hidden oil content, as it turns out! Often it's palm oil too (forbidden fruits for me)...
I was in the local supermarket, getting some supermarkety things. We'd run out of raisins, so rather than getting them from the health food shop, I grabbed a packet off the shelf. Because I was in "supermarket mode" at the time, I flipped over the packet and read the ingredients..."raisins, vegetable oil"! Glad that I'd bothered to check, I put the packet back and looked at another type - same thing, then another...all of the packets of raisins, sultanas and currants had oil listed as an ingredient, sometimes specifying it as palm oil!
I asked at the health food shop and they couldn't even tell me about the raisins they were selling (gave me the "nutter alert - let's just smile sweetly at her" look).
This has really got me ruffled, it has implications for many foods I can still have! - such as my beloved Spiced Apple Crimble cake!
So far, I've trawled the iternet, and all I can find, in terms of suppliers, is in USA (there's a surprise!)I also found a recipe for making your own raisins in a dehydrator (which I don't own).
This is very depressing...and it's so far the biggest challenge to my resolve to stick to my diet in a kosher way. It's much harder to avoid raisins than resist something delicious like chocolate! All the "healthy" stuff you can buy, all the sugar free desserts!
x
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