Aa
well I decided, this is home
Tried the rest, now have come back to the best, again. Off I went to talk to fellow Brits and realized I just was not as connected as I am here. I feel like I'm with family here. I wandered off to talk about healthcare issues in our country, and then realized it didn't matter. It's not where I'm from or where you are from that makes this place my safe haven, it's the people here. You understand me whether you know all my details or not. And you get what I'm about, I hope, that if I'm angry its not about you, if I say something strange it is just my quirky sense of humour, and if I dive into hoplessness and self pity I just need a few kind words to bring me back.
I need to start picking up posts, answering stuff. My battles go on, but so it is with all of us. And we could all so easily fall into our own worlds and not reach out. But people here do not do that, it seems the more you have on your plate, the more compassion you send out. This is a jewel of a forum, and I am privileged and often humbled by so many of you.
What is this maybe the third time or so I tried wandering off? Just couldn't do it. You are all too important to me.
My tail is wagging and I've wiped my muddy feet before coming back. Catching up on some other things, then will look at a few posts and answer if I can soon.
May even tell you about the letter from my neurologist some time. Fortunately his secretary's answerphone was full, stymying my initial grumpy response. On second reading though the letter was almost comical. He has altered the whole of the history of our relationship to make him look good for taking me back. I'll let him have his moment. He clearly is still seeing me as a neurology case, knowing that to miss a diagnosis would not be good for him, but he just doesn't know how to handle seeing me again. I need to tread carefully with him. My GP may not refer me if he dismisses me, he does not overide the opinions of consultants. It's strange how now all my focus is on the brain findings, clearly the CNS is struggling over something, or was. I wish I could show you the scans here, but don't even know how to do that. Not very good at that sort of thing.
Am on riddiculously strong antibiotics. My doctor gave me double the dose usually prescribed. All I said was my ears felt a bit funny and I had a temperature, but apparently there was infection behind the eardrum. I kept falling over, worse than usual, just suddenly crashing to the ground or shop shleves or furniture without any warning, cane and all, suppose the balance mechanism has gone. Noticed on the leaflet these antibiotics are also used to treat Lymes, so who knows, they may mop up that too if it's there. Have a week's worth. Apparently they are so strong they can cause liver failure, and I'm taking double dose, along with all my other meds. Must have been a good reason why the doctor prescribed this, I thought it was a pretty minor problem. Temperature has gone down though and ear feels less strange, just my balance is riddiculous.
Time to start giving back. Just watching Desperate Housewives, the only programme I watch online, don't have a television, then need to catch up on work. Have hardly been there so they may be looking at that if I don't start turning up, then will catch up with the forum.
All my battles? No success still but am in for round two, with strategies. Just need to trust in life. It always eventually works out. Like my finding this great forum just months before getting a scary MRI.
Need to put a halt on my rambling. EVERYONE is complaining I go on too long in my emails, telephone messages etc. Just like to write.
Whoever suggested I write short stories - you're on. You know a publisher? Can churn them out en mass. Whether they'd be any good or not....
love to my forum family
wish x
I need to start picking up posts, answering stuff. My battles go on, but so it is with all of us. And we could all so easily fall into our own worlds and not reach out. But people here do not do that, it seems the more you have on your plate, the more compassion you send out. This is a jewel of a forum, and I am privileged and often humbled by so many of you.
What is this maybe the third time or so I tried wandering off? Just couldn't do it. You are all too important to me.
My tail is wagging and I've wiped my muddy feet before coming back. Catching up on some other things, then will look at a few posts and answer if I can soon.
May even tell you about the letter from my neurologist some time. Fortunately his secretary's answerphone was full, stymying my initial grumpy response. On second reading though the letter was almost comical. He has altered the whole of the history of our relationship to make him look good for taking me back. I'll let him have his moment. He clearly is still seeing me as a neurology case, knowing that to miss a diagnosis would not be good for him, but he just doesn't know how to handle seeing me again. I need to tread carefully with him. My GP may not refer me if he dismisses me, he does not overide the opinions of consultants. It's strange how now all my focus is on the brain findings, clearly the CNS is struggling over something, or was. I wish I could show you the scans here, but don't even know how to do that. Not very good at that sort of thing.
Am on riddiculously strong antibiotics. My doctor gave me double the dose usually prescribed. All I said was my ears felt a bit funny and I had a temperature, but apparently there was infection behind the eardrum. I kept falling over, worse than usual, just suddenly crashing to the ground or shop shleves or furniture without any warning, cane and all, suppose the balance mechanism has gone. Noticed on the leaflet these antibiotics are also used to treat Lymes, so who knows, they may mop up that too if it's there. Have a week's worth. Apparently they are so strong they can cause liver failure, and I'm taking double dose, along with all my other meds. Must have been a good reason why the doctor prescribed this, I thought it was a pretty minor problem. Temperature has gone down though and ear feels less strange, just my balance is riddiculous.
Time to start giving back. Just watching Desperate Housewives, the only programme I watch online, don't have a television, then need to catch up on work. Have hardly been there so they may be looking at that if I don't start turning up, then will catch up with the forum.
All my battles? No success still but am in for round two, with strategies. Just need to trust in life. It always eventually works out. Like my finding this great forum just months before getting a scary MRI.
Need to put a halt on my rambling. EVERYONE is complaining I go on too long in my emails, telephone messages etc. Just like to write.
Whoever suggested I write short stories - you're on. You know a publisher? Can churn them out en mass. Whether they'd be any good or not....
love to my forum family
wish x
Hi Wish,
Surprised to see you up so late being a work night .....
Can you just pretend to play nice for a while with this neuro so you can get the information and referral you need? I know you have issues with him, as well you bloody well should but you unfortunately need him. And you and he both know it!!!
You are right, just carrying those anger management books on the train doesn't work to infiltrate your brain - you actually have to open them and read!
I don't think we get Little Britain on BBC America, but I do watch You Are What you Eat and Clean House- both are disgustingly addictive shows. Those shows make me feel slim and a domestic goddess compared to some of their subjects. Funny what people will agree to for their few moments of fame on television. Perhaps you could pilot a new show for BBC, something about searching for intelligent life among the medical profession in the UK or some game show where the patient is the contestant and you get three dx's to choose from.... or you get the drift. I love BBC - sometimes informative, always entertaining if not challenging.
Have a good start to your week and we'll chat soon I hope. Lulu
Surprised to see you up so late being a work night .....
Can you just pretend to play nice for a while with this neuro so you can get the information and referral you need? I know you have issues with him, as well you bloody well should but you unfortunately need him. And you and he both know it!!!
You are right, just carrying those anger management books on the train doesn't work to infiltrate your brain - you actually have to open them and read!
I don't think we get Little Britain on BBC America, but I do watch You Are What you Eat and Clean House- both are disgustingly addictive shows. Those shows make me feel slim and a domestic goddess compared to some of their subjects. Funny what people will agree to for their few moments of fame on television. Perhaps you could pilot a new show for BBC, something about searching for intelligent life among the medical profession in the UK or some game show where the patient is the contestant and you get three dx's to choose from.... or you get the drift. I love BBC - sometimes informative, always entertaining if not challenging.
Have a good start to your week and we'll chat soon I hope. Lulu
Tried three times to post, each time it disappeared!
I remember saying lots of happy thank yous and trying to answer Quix's question, but the computer said no (Do you get the comedy 'Little Britain' in the States?)
Anway, just to repeat, lots of happy thank yous and no I still haven't got on with my work. Next on the list after posting.
Quix re question about the MRIs following the neurologist's amission of white matter lesions on the brain but not giving me any more information. I got the scans, and was left to peer helplessly at them myself, with my half gluteus knowledge of brain physiology from being a psychologist a million years ago, working on a neurology ward for the elderly more recently, and googling images of normal brains and those with various conditions. In my research I did manage to drop my enormous Anatomy and Physiology textbook on my foot, not quite as heavy as Grays Anatomy, but heavy enough to send me into a stream of colourful non medical explitives relating to my little toe.
Looked only at the really obvious white areas. Largest ones are at the back of my cerebrum, the top, and around the vagus nerve area (hiccups?). Also lesions obvious at the insertion of the spinal cord into the brain on the right, and around the top vertebrae. The ventricles between the two hemispheres seemed to have some lesions attached, blurring at the edges. The ones on the cerebrum were more defined in shape, either rounded or the extra bright one at the back almost triangular. Those deeper in the brain were more blurred around the edges, and the one near what looked like the vagus nerve area was the largest, not obvious until I messed around with the images for a bit. The cerebrum, apart from these large lesions, is dotted with quite a few very small ones too, but the large ones are at the edge, nearest the skull bone. Does this layman(woman) reading mean anything to you?
Each time I look I find more, or find out one that looked small is actually quite big when the images further into the brain are looked at. How this can be in any way average is beyond me. I have to remember that this neurologist generally only sees brain scans of very very sick people, and in comparison of course my brain looked good, but it is in no way a normal brain, even for an elderly person.
CNS damage was not a thought until now, because of my deadened rather than hyper-reflexes, and joint problems being the first sympotms. I remember reading somewhere you talking about how joint pain can be from nerve damage, as more pressure is put on them.
I know who I want to see, and am not good at playing the right part to appease my neurologist. I couldn't help myself, I had to respond to some of his comments in his letter. I was polite, but if he is painting a picture of me as some crazed patient to put his own part in this to rights I cannot go along with this. I keep asking him to just let the past be and made it clear that if he starts telling other consultants bad things about me I will not see them. I gave him the chance to let me go, but instead he is inexplicably now holding on to me.
There must be a reason. Despite the unforgivable crime of having a patient who seems to be attempting to diagnose herself, and with arguments he cannot deny (arrogant, me?), he knows that if he misses this diagnosis it will not bode well for him. Locked in an inescapable relationship both sides. Unless I say the word and discharge myself. But not convinced that is a good move just yet. If I was a doctor I would hate to have me as a patient. He must know there is a problem with the scans, why else would he put himself through agreeing to see me again?
I need to read those anger management books a whole load faster, or even better start reading them.
You all are heroes here for putting up with me.
Will get back to work, and maybe check in later, although have an early start tomorrow. These antibiotics just make me want to sleep all day. So STRONG. Cleaning out my system of every bug going, and have a week of this stuff.
luv ya all
wish
I remember saying lots of happy thank yous and trying to answer Quix's question, but the computer said no (Do you get the comedy 'Little Britain' in the States?)
Anway, just to repeat, lots of happy thank yous and no I still haven't got on with my work. Next on the list after posting.
Quix re question about the MRIs following the neurologist's amission of white matter lesions on the brain but not giving me any more information. I got the scans, and was left to peer helplessly at them myself, with my half gluteus knowledge of brain physiology from being a psychologist a million years ago, working on a neurology ward for the elderly more recently, and googling images of normal brains and those with various conditions. In my research I did manage to drop my enormous Anatomy and Physiology textbook on my foot, not quite as heavy as Grays Anatomy, but heavy enough to send me into a stream of colourful non medical explitives relating to my little toe.
Looked only at the really obvious white areas. Largest ones are at the back of my cerebrum, the top, and around the vagus nerve area (hiccups?). Also lesions obvious at the insertion of the spinal cord into the brain on the right, and around the top vertebrae. The ventricles between the two hemispheres seemed to have some lesions attached, blurring at the edges. The ones on the cerebrum were more defined in shape, either rounded or the extra bright one at the back almost triangular. Those deeper in the brain were more blurred around the edges, and the one near what looked like the vagus nerve area was the largest, not obvious until I messed around with the images for a bit. The cerebrum, apart from these large lesions, is dotted with quite a few very small ones too, but the large ones are at the edge, nearest the skull bone. Does this layman(woman) reading mean anything to you?
Each time I look I find more, or find out one that looked small is actually quite big when the images further into the brain are looked at. How this can be in any way average is beyond me. I have to remember that this neurologist generally only sees brain scans of very very sick people, and in comparison of course my brain looked good, but it is in no way a normal brain, even for an elderly person.
CNS damage was not a thought until now, because of my deadened rather than hyper-reflexes, and joint problems being the first sympotms. I remember reading somewhere you talking about how joint pain can be from nerve damage, as more pressure is put on them.
I know who I want to see, and am not good at playing the right part to appease my neurologist. I couldn't help myself, I had to respond to some of his comments in his letter. I was polite, but if he is painting a picture of me as some crazed patient to put his own part in this to rights I cannot go along with this. I keep asking him to just let the past be and made it clear that if he starts telling other consultants bad things about me I will not see them. I gave him the chance to let me go, but instead he is inexplicably now holding on to me.
There must be a reason. Despite the unforgivable crime of having a patient who seems to be attempting to diagnose herself, and with arguments he cannot deny (arrogant, me?), he knows that if he misses this diagnosis it will not bode well for him. Locked in an inescapable relationship both sides. Unless I say the word and discharge myself. But not convinced that is a good move just yet. If I was a doctor I would hate to have me as a patient. He must know there is a problem with the scans, why else would he put himself through agreeing to see me again?
I need to read those anger management books a whole load faster, or even better start reading them.
You all are heroes here for putting up with me.
Will get back to work, and maybe check in later, although have an early start tomorrow. These antibiotics just make me want to sleep all day. So STRONG. Cleaning out my system of every bug going, and have a week of this stuff.
luv ya all
wish
Dear Wish,
I told you those Brits were too proper for you and you'ld be back... I am so glad you came back sooner rather than later. Your post tonight left me all smiles, and you can't begin to know how much I needed that smile. Your mission for today is successfully accomplished!
My best to you dear, we'll see you around,
Lulu
I told you those Brits were too proper for you and you'ld be back... I am so glad you came back sooner rather than later. Your post tonight left me all smiles, and you can't begin to know how much I needed that smile. Your mission for today is successfully accomplished!
My best to you dear, we'll see you around,
Lulu
See??? You can go anywhere you want for information, but home is where the heart and friends and understanding is. We''ll always welcome you back and no one s annoyed at trying out new places.
I worry about your CNS' struggles, too. What did that last MRI show?
Quix
I worry about your CNS' struggles, too. What did that last MRI show?
Quix
It was me!!! I said write stories. Yes, just do it. To me writing is like painting. You slap something down to cover the white and then refine, revise, add details. Use color (full) language. Use humor and inference. Relate to the lonely state of being a human being. You must consider the viewer (reader) and don't give them everything. They must have a chance to relate fueled by their own past experiences. Worry about publishing later.
So glad you are back.
No complaints here,
Hugs,
Mary Kay
So glad you are back.
No complaints here,
Hugs,
Mary Kay
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