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Calling Lost Sapphire

Oh no....... I''ve been wondering about you but I haven''t been on PS as much as I used to be. It''s really a shame that the worst things happen to such nice people. I''m so sorry.
 
Hi everybody.

Yes, I''ve been mostly lurking. Don''t have a lot to say these days, I guess! I''m hyper sensitive that anything I post might sound like whining
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Things are ok. I''m medicated fairly well and tolerating it pretty good, so far. We''ll do a check in a month to see if I can stay on these meds. The problem is they kind of lose their effectiveness about every 10 days, so we have to bump up the dosage. Sooner or later I''ll be maxed out.

Christmas was good. Almost pain free (woo hoo!). I''m just taking one day at a time and trying to focus on the good days.

Thank you all for your kindness. I really, REALLY appreciate it!

LS
 
So good to hear from you and to hear that things are manageable. I certainly hope it continues for you!
 
LS sounds like you have a reason to whine if you want. I don''t often post down in these parts so its the first I''m seeing of your issue.

above all, you have a very positive attitude which will see you through all this. My mom is also like that (she has lupus)


personally I would have taken gailey up on the getting high part...lol




-A
 
hi losty :)

i read some of the threads on PS the other day for the first time in a long time, and came across this one. so i asked ali and andrey to reactivate my account so i could post.

and now, of course, it occurs to me that i have nothing specifically worthwhile to say... :S

the truth is that what i''d really like to do is sit with you with a cup of tea and just ''be'' - because, no matter what you''re going through right now, i just know that people (like me!) still enjoy your company, are still blessed spending time with you, still benefit from having you in their day to day lives.

so i''m sending you prayers and hugs and all the warmth that can be mustered in this new york winter, and asking that you keep us up to date with how you''re feeling and what the drs say.

you inspire me, lady; don''t you forget it!

xo
 
You aren''t a loser-you''re a fighter. Medicine changes every 10 minutes these days. Hang in there!
 
You aren''t whining; we are here for you. I always enjoy your post LostSapphire. Sending you a giant hug and lots of prayers.
 
Sending you a huge hug.
 
*little bump so losty sees this*
 
Hi LS!
Thinking of you
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xoxoxoxo
 
Hi LS! I hope that something can be done to alleviate your pain! Thinking of you!!!
 
Date: 1/10/2010 7:21:35 PM
Author: whitby_2773
hi losty :)

i read some of the threads on PS the other day for the first time in a long time, and came across this one. so i asked ali and andrey to reactivate my account so i could post.

and now, of course, it occurs to me that i have nothing specifically worthwhile to say... :S

the truth is that what i''d really like to do is sit with you with a cup of tea and just ''be'' - because, no matter what you''re going through right now, i just know that people (like me!) still enjoy your company, are still blessed spending time with you, still benefit from having you in their day to day lives.

so i''m sending you prayers and hugs and all the warmth that can be mustered in this new york winter, and asking that you keep us up to date with how you''re feeling and what the drs say.

you inspire me, lady; don''t you forget it!

xo
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"Losty" - I like that!

Yah know, nobody says it quite as well as Whitby does, no wonder she makes a living at it.

I just want to say, you inspire me too, as I am sure you do countless other folks on here - heck and that''s just your mangling skills. Gawd I wish we lived closer together. I''d come over and mangle for you on your bad days and if you were really good, I might just let you mangle Mr Gailey''s smalls on your good days.

Much love Losty
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Date: 1/19/2010 3:27:02 PM
Author: Gailey
'Losty' - I like that!

Yah know, nobody says it quite as well as Whitby does, no wonder she makes a living at it.

I just want to say, you inspire me too, as I am sure you do countless other folks on here - heck and that's just your mangling skills. Gawd I wish we lived closer together. I'd come over and mangle for you on your bad days and if you were really good, I might just let you mangle Mr Gailey's smalls on your good days.

Much love Losty
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Thanks Gailey.

I'm having a hard time these days. The meds have stopped working (as we expected) so the specialists are contorting themselves to come up with something. The problem is, the nerve damage on my brain stem is permanent. So I'm adjusting to that. In a funny way, I'm doing ok psychologically because knowing something "is what it is" makes it easier than hoping for relief from some new drug....

But it really hurts. I almost posted a 'call out' last night for someone to keep me company. Went to bed instead!

In regards to the offer to 'mangle Mr. Gailey's smalls'..I wonder how many people even know what that means? (I do! so no thanks!) but you made me giggle!

LS
 
Date: 1/19/2010 4:50:02 PM
Author: LostSapphire
Date: 1/19/2010 3:27:02 PM

Author: Gailey

''Losty'' - I like that!


Yah know, nobody says it quite as well as Whitby does, no wonder she makes a living at it.


I just want to say, you inspire me too, as I am sure you do countless other folks on here - heck and that''s just your mangling skills. Gawd I wish we lived closer together. I''d come over and mangle for you on your bad days and if you were really good, I might just let you mangle Mr Gailey''s smalls on your good days.


Much love Losty
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Click to expand...

Thanks Gailey.


I''m having a hard time these days. The meds have stopped working (as we expected) so the specialists are contorting themselves to come up with something. The problem is, the nerve damage on my brain stem is permanent. So I''m adjusting to that. In a funny way, I''m doing ok psychologically because knowing something ''is what it is'' makes it easier than hoping for relief from some new drug....


But it really hurts. I almost posted a ''call out'' last night for someone to keep me company. Went to bed instead!


In regards to the offer to ''mangle Mr. Gailey''s smalls''..I wonder how many people even know what that means? (I do! so no thanks!) but you made me giggle!


LS
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losty -

in 5 days time, i''ll be home in australia and my daytime is your night. and i''m not a big sleeper anyway.

all that to say, if you need somebody to kill the night hours with - i''m your girl. throw up a thread in hangout and, if i''m on PS at all, i''ll be there pronto.

we all have times where we need to be supported by our friends - and true friends want to do it, too. so just yell - or - as we say in australia - gimme a hoy! as in "hoy - WHIT! need a hand here..."

be my pleasure, losty :)

xo
 
I have no idea how I missed all this. I feel terrible now that I have researched back to see what happened so that I am up to speed. I usually don''t go into threads where a certain pser is being "looked for". For some reason I did tonite and went through thread after thread. I am so sorry that I was not there for you. I know that you got a lot of support from everyone, I just wish that I had been there.
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You are such a lovely person and I feel for you deeply and I know that this is not an ideal situation. I would listen to you whine as often as you want. I would rather you do it here and have us here to help you through as best as we can than to lay awake alone in pain with no one.
 
Date: 1/19/2010 4:50:02 PM
Author: LostSapphire

Date: 1/19/2010 3:27:02 PM
Author: Gailey
''Losty'' - I like that!

Yah know, nobody says it quite as well as Whitby does, no wonder she makes a living at it.

I just want to say, you inspire me too, as I am sure you do countless other folks on here - heck and that''s just your mangling skills. Gawd I wish we lived closer together. I''d come over and mangle for you on your bad days and if you were really good, I might just let you mangle Mr Gailey''s smalls on your good days.

Much love Losty
35.gif
Click to expand...
Thanks Gailey.

I''m having a hard time these days. The meds have stopped working (as we expected) so the specialists are contorting themselves to come up with something. The problem is, the nerve damage on my brain stem is permanent. So I''m adjusting to that. In a funny way, I''m doing ok psychologically because knowing something ''is what it is'' makes it easier than hoping for relief from some new drug....

But it really hurts. I almost posted a ''call out'' last night for someone to keep me company. Went to bed instead!

In regards to the offer to ''mangle Mr. Gailey''s smalls''..I wonder how many people even know what that means? (I do! so no thanks!) but you made me giggle!

LS
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Honey, I am rarely asleep early and I spend my life on my laptop. I`m going to subscribe to this thread, so that I will know very quickly if you need to rant or just chat. I only wish I could do more for you.

I`m sure there is something quite perverse in sending out cryptic messages on a public forum, but so long as I made you smile, that`s all that counts.

I`m sure the answer to this question is yes, but have you exhausted all fonts of wisdom on this condition? The Mayo for example? Remind me what it`s called again.

Much love
XX
 
I''m so sorry that this is happening to you LS. You are one of my favorite posters and I did a search for you tonight after realizing I haven''t seen any posts by you. I''m not sure what to say except that I am thinking of you and I really hope for relief for you.
 
Date: 1/19/2010 8:40:31 PM
Author: Gailey
Honey, I am rarely asleep early and I spend my life on my laptop. I`m going to subscribe to this thread, so that I will know very quickly if you need to rant or just chat. I only wish I could do more for you.

I`m sure there is something quite perverse in sending out cryptic messages on a public forum, but so long as I made you smile, that`s all that counts.

I`m sure the answer to this question is yes, but have you exhausted all fonts of wisdom on this condition? The Mayo for example? Remind me what it`s called again.

Much love
XX
Click to expand...

That''s good to know, Gailey. Sometimes I just need somebody out there, or even, one of Gecko''s puppy pics to help me through the night.

Before the surgery (microvascular decompression, MVD for short), I had Atypical Trigeminal Neuralgia and a type of facial neuralgia.

What they''re saying now, post op, is it is Anaesthesia Dolorosa. Link: http://facial-neuralgia.org/conditions/ad.html (it''s pretty depressing, sorry...)

Anyways, in some ways I''m actually adjusting better now that I know that there really isn''t any kind of fix for this. Just (if we can get them) intermittent periods of relief from some meds. I continue to work full time so I can''t take the full dose of meds needed to really kill the monster. The neurosurgeons said "we can give you relief from that ma''am....would you please hand over your drivers licence?" Work gives me a great distraction from the monster, and, I can leave if I need to, whenever. Nice to have $$ too, I like shopping!

Anyhow, it''s 9:30 p.m. and I have a 6 a.m. appt with the neurologist (yeah, what an amazing, brilliant man, who runs clinics at 6 a.m.! can you believe that? Only in Canada, eh?).

nighty night. thanks for listening.
emlove.gif


LS
 
And hugs to all of you who have posted.
emlove.gif
I really, really appreciate your comments and perspective.

But yanno, I'm still "vertical", it's not something that will kill me (maybe just my spirit some days), and there are always people with worse things. We all have gunk to deal with....so many of us here are 'walking wounded' in some way or other.

I think what I'm having the hardest time with, is the fact that I have a hole in my head and it didn't work!
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ok, whine over! love you all lots. thanks.

LS

ETA: Practicing my 'attitude of gratitude': a sweet DH, a wonderful large extended family, 3 furkids (Cairn Terrorists) an amazing job and we got all the outdoor XMAS lights in before we're snowed in for the winter here in Canuck-land. So how bad can things really be, huh?
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Losty (you''re stuck with that now you know!)

I know I made a throw-away comment a while back about getting high, but I was sort of half serious. You may well be a candidate for some type of medical cannabis relief. I know nothing about it (cos I''m a lot more prim than I generally let on), except to say that I know it exists. Might be worth trying to find out about it.

Anyhow, you trot off to bed and I shall read up on your condition a bit more and legal medical cannabis.

Sleep well.

XX
 
Date: 1/19/2010 9:38:52 PM
Author: LostSapphire
And hugs to all of you who have posted.
emlove.gif
I really, really appreciate your comments and perspective.

But yanno, I''m still ''vertical'', it''s not something that will kill me (maybe just my spirit some days), and there are always people with worse things. We all have gunk to deal with....so many of us here are ''walking wounded'' in some way or other.

I think what I''m having the hardest time with, is the fact that I have a hole in my head and it didn''t work!
29.gif


ok, whine over! love you all lots. thanks.

LS

ETA: Practicing my ''attitude of gratitude'': a sweet DH, a wonderful large extended family, 3 furkids (Cairn Terrorists) an amazing job and we got all the outdoor XMAS lights in before we''re snowed in for the winter here in Canuck-land. So how bad can things really be, huh?
1.gif
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Ahem, not to mention the best ironing implement on this side of the 49th parallel!!
 
Date: 1/19/2010 9:38:52 PM
Author: LostSapphire
And hugs to all of you who have posted.
emlove.gif
I really, really appreciate your comments and perspective.


But yanno, I''m still ''vertical'', it''s not something that will kill me (maybe just my spirit some days), and there are always people with worse things. We all have gunk to deal with....so many of us here are ''walking wounded'' in some way or other.


I think what I''m having the hardest time with, is the fact that I have a hole in my head and it didn''t work!
29.gif



ok, whine over! love you all lots. thanks.


LS


ETA: Practicing my ''attitude of gratitude'': a sweet DH, a wonderful large extended family, 3 furkids (Cairn Terrorists) an amazing job and we got all the outdoor XMAS lights in before we''re snowed in for the winter here in Canuck-land. So how bad can things really be, huh?
1.gif
Click to expand...


and can i also mention - the kickingest sapphire ring on PriceScope?? you''re too humble to mention it, i know - but - heck, lady! *i''ll* say it!!
 
Saw the Canadian "guru" Doc of Neuropharmacology today. (He's my neurologist but really, he is THE guy). He said "well my dear, your condition is truly fascinating, but I must admit that it is now beyond my expertise."
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That being said, he and my neurosurgeon are working on a plan with a facial neuralgia pain specialist. Their aim is to come up with a new medication cocktail to maybe calm things down for another few months.

Not much optimism on their parts, unless I'm willing to be opiated to a stupor.

...so I'm off to mangle something...maybe Mr Losty's smalls.

thanks for listening.

LS
 
Lost Sapphire,

I don''t think I''ve posted in your other threads about this, but your story really moves me. I hope at some point in time you can find some true relief from the pain, and I''m sorry your most recent surgery didn''t help. I was rereading one of your past threads pre surgery, and you talk about excruciating pain, almost to the point of unbearable. Are you still experiencing pain of this level, or did the surgery help a little bit with this level of pain? Just trying to see if you are experiencing any relief from the pain. By the way, I''m not a doctor or anything like that, just interested in medicine. And if you don''t feel like answering my questions that''s more than fine. I don''t want to pry too much, just hoping there may have been some slight benefit to you getting surgery done. And I have to tell you, I''m sure I wouldn''t be as brave as you have been coping with everything. I''m rather a wimp when it comes to pain. I hope your doctors can come up with something to relieve the pain you experience.
 
Date: 1/20/2010 9:11:49 PM
Author: coda72
Lost Sapphire,

I don''t think I''ve posted in your other threads about this, but your story really moves me. I hope at some point in time you can find some true relief from the pain, and I''m sorry your most recent surgery didn''t help. I was rereading one of your past threads pre surgery, and you talk about excruciating pain, almost to the point of unbearable. Are you still experiencing pain of this level, or did the surgery help a little bit with this level of pain? Just trying to see if you are experiencing any relief from the pain. By the way, I''m not a doctor or anything like that, just interested in medicine. And if you don''t feel like answering my questions that''s more than fine. I don''t want to pry too much, just hoping there may have been some slight benefit to you getting surgery done. And I have to tell you, I''m sure I wouldn''t be as brave as you have been coping with everything. I''m rather a wimp when it comes to pain. I hope your doctors can come up with something to relieve the pain you experience.
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Hi Coda
No, I don''t mind your asking. It''s getting close to where it was before the surgery. The meds really work, for a while. But I''m maxed out on the most effective one (for me). Even then, after 8-10 days at each dosage level, I get breakthrough pain. I am now at almost 3 weeks at this level, can''t go any higher, and the pain is getting quite severe.

LS
 
LS...lots of hugs and prayers for you.
 
And I''m happy to chat any time. I''m in a different time zone and 13 hours ahead of Eastern time.
 
Hey Losty

I started doing some digging (pardon the pun!). I have a question for you. When you decided on the MVD surgery, what was your feeling about a Rhizotomy? Is this a possibility following MVD or does having MVD preclude a Rhizotomy?

In the link you sent yesterday I noticed that accupunture and tens were mentioned under the relief section. Have you tried either?

If you''ve hashed over all of this before and are sick of it, just tell me to "put a sock in it". I won''t mind! I just want to try and understand a bit more about your condition. Knowledge is power - right?
 
I don't know if this blog will help you Losty, but it is certainly an interesting concept.

Update: Here is an addition to the original blog. It's still from November 2008, but I read the comments and the last comment from the writer was on December 1st 2009 and is still positive.

Further update: It seems the couple involved in pioneering this therapy live in upstate New York on the Canadian border, which must be within spitting distance of you. another linky
 
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