Just over 3 months ago I deleted one of my blogs, 'Limbo Land' which has now finally disappeared forever. There are remnants of it left. It was on a couple of blog lists which did make me uneasy and it was just becoming very depressing with what I was I what posting on it.
The limbo referred to where I am with a MS diagnosis. Still in the same place, but I've just passed another medical and had a long talk with the doctor about how I am getting on. This one was extremely important for me as failing would have changed everything.
The doctor said I had a good handle on what could happen.
When I was back in the reception settling up, he made a point of coming through wishing me all the best and shaking my hand. That has never happened before and left me feeling really good. Even better than just passing the medical which I was stressed about.
'Limbo Land' has gone into the void of The Net, and to everyone who left comments on it. Thank you, they helped more than you could all know.
Showing posts with label ms. Show all posts
Showing posts with label ms. Show all posts
Friday, 13 August 2010
Thursday, 15 July 2010
A Doctors View
http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/
I saw the above on the Carnival Of MS Bloggers site which I follow.
The link takes you to the oringinal site. It's a letter to patients with a chronic disease which I think is well worth a read. I've been in the position of seeing a couple of doctors and them telling me that they can't give me an answer which is very disconcerting and actually very scary.
I saw the above on the Carnival Of MS Bloggers site which I follow.
The link takes you to the oringinal site. It's a letter to patients with a chronic disease which I think is well worth a read. I've been in the position of seeing a couple of doctors and them telling me that they can't give me an answer which is very disconcerting and actually very scary.
Thursday, 11 February 2010
Maybe......?
I saw the news report about the possible link between CCSVI and MS today on BBC news and then found the Sky news report on You Tube via the MS Society website. The definition of CCSVI is from Wikipedia.
Maybe this could be a breakthrough and a widening of the said veins could be an effective treatment for MS.
YouTube - BREAKING NEWS: MS Society comments on CCSVI announcement live on Sky News
Chronic cerebro-spinal venous insufficiency (CCSVI) is a recently proposed syndrome in which the cervical and thorac veins are not able to remove efficiently the blood from the central nervous system (CNS).
It is hypothesized to be due to stenosis of the jugular and azygos veins. Such a vascular picture has been described by Paolo Zamboni in 2008, who also reported an association of CCSVI with multiple sclerosis (MS). In a later double blinded study, a significative correlation was found between MS and CCSVI[1].
Maybe this could be a breakthrough and a widening of the said veins could be an effective treatment for MS.
YouTube - BREAKING NEWS: MS Society comments on CCSVI announcement live on Sky News
Chronic cerebro-spinal venous insufficiency (CCSVI) is a recently proposed syndrome in which the cervical and thorac veins are not able to remove efficiently the blood from the central nervous system (CNS).
It is hypothesized to be due to stenosis of the jugular and azygos veins. Such a vascular picture has been described by Paolo Zamboni in 2008, who also reported an association of CCSVI with multiple sclerosis (MS). In a later double blinded study, a significative correlation was found between MS and CCSVI[1].
Saturday, 16 January 2010
April
People born in April most at risk of MS - Times Online
I found the link above on the MS Society site. I wasn't born in April, but last year it was that month the Optic Neuritis hit me. April is a month I dread. It seems to have been a bad month for me over the years.
The link below is the post I put up when my eye stated playing up last April and happened not long after a incident that could be described as transphobic.
Shadows of a Dream: 04/18/09
Hopefully this April won't be so interesting.
I found the link above on the MS Society site. I wasn't born in April, but last year it was that month the Optic Neuritis hit me. April is a month I dread. It seems to have been a bad month for me over the years.
The link below is the post I put up when my eye stated playing up last April and happened not long after a incident that could be described as transphobic.
Shadows of a Dream: 04/18/09
Hopefully this April won't be so interesting.
Monday, 7 December 2009
MS and TG
I've been unsure whether to write this. A while ago this blog was listed on a MS blog community. I must admit I nearly asked for it to be removed..I've read quite a few posts on other MS blogs and never commented on any. I finally did on one with some trepidation if they came back to these blogs.
I got a comment back-
' Never be afraid or ashamed to be who you are.'
I must admit I was surprised at the comment, but then again I thought why surprised. The majority of people don't see it as an issue if I'm transgender. I know there are some that do. I've come across some when I've been out.
In the end it's me that has the hang up and that comes down to fear.
This blog is about 2 aspects that make up my life, but not the whole. If I comment on a MS blog it would have nothing to do with being TG. If someone then wants to see who I am they can look back here.
The hope is gender identity becomes a non issue for everyone including myself, but probably not in my lifetime, and we can just get on with living where ever we are on the spectrum.
I must say what I've got from the MS blog community has been nothing but positive
Thank You
Karen
I got a comment back-
' Never be afraid or ashamed to be who you are.'
I must admit I was surprised at the comment, but then again I thought why surprised. The majority of people don't see it as an issue if I'm transgender. I know there are some that do. I've come across some when I've been out.
In the end it's me that has the hang up and that comes down to fear.
This blog is about 2 aspects that make up my life, but not the whole. If I comment on a MS blog it would have nothing to do with being TG. If someone then wants to see who I am they can look back here.
The hope is gender identity becomes a non issue for everyone including myself, but probably not in my lifetime, and we can just get on with living where ever we are on the spectrum.
I must say what I've got from the MS blog community has been nothing but positive
Thank You
Karen
Wednesday, 18 November 2009
Tattoo
Tattoo - Jordin Sparks
I found this, just click above . The song Tattoo is by Jordin Sparks who won American Idol in 2007 if my information is correct.
I can see what the person who put together the video means about this song. Not one I would usually listen to, but there you go.
The images go really well with the lyrics it's well worth a look.
I found this, just click above . The song Tattoo is by Jordin Sparks who won American Idol in 2007 if my information is correct.
I can see what the person who put together the video means about this song. Not one I would usually listen to, but there you go.
The images go really well with the lyrics it's well worth a look.
Tuesday, 15 September 2009
The End of the Beginning
The last few days have been a bit of a rollercoaster. I guess the problem is I had to much time to think and then started spending to much time on the net. One minute I have ms then the diagnosis can't be confirmed. You would think I would be happy, but it is strange to be told there is a chance I haven't but probably will develop it at some stage. There are no support groups for that. So what now? The last 5 years plus have been a real learning curve which have encompassed the lowest points in my life and some real highs. I've met fantastic people in the process.
I've got one thing to do in a couple of hours which for me should mark the end of the beginning of how my life will proceed from now on. Well it feels like I am entering the next stage. I may not know how my body is going to react, but that has helped me in other ways to get my act together.
Enjoy life and go for it.
Love
Karen xx
I've got one thing to do in a couple of hours which for me should mark the end of the beginning of how my life will proceed from now on. Well it feels like I am entering the next stage. I may not know how my body is going to react, but that has helped me in other ways to get my act together.
Enjoy life and go for it.
Love
Karen xx
Friday, 11 September 2009
Hormones and the Brain
Multiple Sclerosis Resource Centre Hormones And MS Research
Been looking at a few sites and I came across this. It does make me wonder if I have a low testostrone level.
This article is an interesting read on how hormones may affect the brain.
It's very scary for me reading this with how it affects men.
I guess it may be another avenue that could lead to an effective treatment some time in the future.'
EDIT
I know things are not right, my sex drive has been vitually non exsistant for a few years and with possible enviromental factors and other possible factors maybe a combination came together and I am really unlucky, but then again only time will tell,
If I was a dog I'd probably be put down.
Been looking at a few sites and I came across this. It does make me wonder if I have a low testostrone level.
This article is an interesting read on how hormones may affect the brain.
It's very scary for me reading this with how it affects men.
I guess it may be another avenue that could lead to an effective treatment some time in the future.'
EDIT
I know things are not right, my sex drive has been vitually non exsistant for a few years and with possible enviromental factors and other possible factors maybe a combination came together and I am really unlucky, but then again only time will tell,
If I was a dog I'd probably be put down.
Monday, 31 August 2009
No Connection
I wrote whats below after I came back from a great time out in Newcastle and then following seeing the neurologist. It's me rambling about what I was told and me getting very nervous and probably very silly. I wasn't going to post this, but then thought why not? I might as well get it out of my system even if I do look a bit stupid trying to connect things that have no connection.
Karen 09/09/09
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I don't know what it is, but I guess most people feel uneasy in hospitals. I've had to visit one a few times this year. My last visit ended up with more questions than answers. I've got at least one more appointment to check up on my eye. During my last visit I was asked more questions to update my medical history. It was tempting to get out one thing about myself, but I thought what would be the point it has no relevence. It was unnerving when told that Optic Neuritis mainly affects women in their 20's. I was then told very quickly it does affect men, but is less common especially for someone my age. The ms diagnosis is on hold as I've only had one attack and the abnormalities on the MRI can't be confirmed as due to ms. At least they decided not to do the lumbar punture. Now I just watch and wait.
I looked on the net about ms and optic neuritis for some of the statistics and the odds of me being finally diagnosed with ms. On different sites they do vary, but all agree they are more common among women. Optic neuritis is a classic sympton of ms, but can be caused by something else, but then again no one knows what causes ms. Another thing I have been told I have a greater than 50% chance of developing ms, but in what form no one knows. This has been borne out by what I've looked at elsewhere.
My life seems so far to have had a series of unanswered questions. In the end I guess that is true for a lot of people. There is no point trying to connect unknowns that have never been connected in any shape or form. I did look at some intersex sites which told me nothing.The fact is men and women get optic neuritis and ms, being transgender has no bearing on it and me trying to connect them is a waste of time.
There are some questions I would like to ask, but would the answers improve things for me and anyway they probably wouldn't be answers just opinions.
I won't give up looking to see if there is anything that makes sense, but really life is a mystery to be explored and enjoyed where possible.
Karen 09/09/09
-------------------------------------------------------------------------------------------------
I don't know what it is, but I guess most people feel uneasy in hospitals. I've had to visit one a few times this year. My last visit ended up with more questions than answers. I've got at least one more appointment to check up on my eye. During my last visit I was asked more questions to update my medical history. It was tempting to get out one thing about myself, but I thought what would be the point it has no relevence. It was unnerving when told that Optic Neuritis mainly affects women in their 20's. I was then told very quickly it does affect men, but is less common especially for someone my age. The ms diagnosis is on hold as I've only had one attack and the abnormalities on the MRI can't be confirmed as due to ms. At least they decided not to do the lumbar punture. Now I just watch and wait.
I looked on the net about ms and optic neuritis for some of the statistics and the odds of me being finally diagnosed with ms. On different sites they do vary, but all agree they are more common among women. Optic neuritis is a classic sympton of ms, but can be caused by something else, but then again no one knows what causes ms. Another thing I have been told I have a greater than 50% chance of developing ms, but in what form no one knows. This has been borne out by what I've looked at elsewhere.
My life seems so far to have had a series of unanswered questions. In the end I guess that is true for a lot of people. There is no point trying to connect unknowns that have never been connected in any shape or form. I did look at some intersex sites which told me nothing.The fact is men and women get optic neuritis and ms, being transgender has no bearing on it and me trying to connect them is a waste of time.
There are some questions I would like to ask, but would the answers improve things for me and anyway they probably wouldn't be answers just opinions.
I won't give up looking to see if there is anything that makes sense, but really life is a mystery to be explored and enjoyed where possible.
Thursday, 6 August 2009
Stay Silent
What do you say or do when a workmate points out that he did a similar job far quicker than you and has a big cheesy grin on his face when telling you this.
No boss has complained or has a problem with me or anyone else has that I know off.
I find it amusing and will admit really annoying to put it mildly that this idiot gets his rocks off trying to put others down. I know there are plenty like him which is really sad. I won't make excuses, but I am beginning to see a whole different side to some people and some off it is not very nice.
When it comes to me I'll stay silent and just get on with things. May be I'm just a bit over sensitive at the moment, but there are people that I want as little to do with as possible
No boss has complained or has a problem with me or anyone else has that I know off.
I find it amusing and will admit really annoying to put it mildly that this idiot gets his rocks off trying to put others down. I know there are plenty like him which is really sad. I won't make excuses, but I am beginning to see a whole different side to some people and some off it is not very nice.
When it comes to me I'll stay silent and just get on with things. May be I'm just a bit over sensitive at the moment, but there are people that I want as little to do with as possible
Sunday, 14 June 2009
Lucky
3 pictures of Canal Street. This is how the world looked recently when I closed my left eye.
The first one is normal. The second is when it was at it's worst. The third how it looks now.
Hopefully it will get back to the first, but that could take a year or maybe it will stay like the third.
I feel very lucky that both eyes weren't attacked and that it is healing.
I have read of people losing sight in both eyes which must be frightening. One was bad enough. Repeated relapses can eventually wreck your sight. This is known as Optic Neuritis. A very scary side of MS.
For me I am using this blog to face up to what can happen. It's been over a couple of months now and I feel very lucky. It's changed my view on some things and I am looking at changing some bad habits.
There are people out there are a lot worse than me. I feel I've got a chance to have a good life with what is left of it. Staying positive is a must and giving it my best shot.
Take care all
xx
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