LostSapphire: sending out love, dust, prayers and support to you!!!

[LaurenThePartier]

((((((((((((((hugs)))))))))))))) LS - I''m wishing you the best of luck, dear.

 

[LostSapphire]

What''s the emotie for scared?

LS

 

[iheartscience]

Date: 11/27/2008 9:24:22 PM
Author: LostSapphire
What's the emotie for scared?

LS

I'm just seeing this thread now-I hope you're feeling okay but from the sound of this post it doesn't seem like it...

I'm not familiar with your condition but I'm going to have a look at the links you posted. I'm sending tons of dust your way-I hope they can find the problem soon so you will feel better!

As for the scared emotie, I would go with this one, myself:

But I don't want you to have to use it!

ETA that I read the links now and I think I've seen a show about this on Discovery Health. All I can say is ouch...that link said it's the most painful condition you can have. Tons of pain-free dust heading your way!

 

[Blackpaw]

Oh LS im so sorry you''re scared and in pain, i hope this is resolved for the better as soon as possible. My thoughts are with you....

Hey its thanksgiving in the states at the moment ive gathered? I''ll keep my thanksgivings in check til you''re better

 

[gwendolyn]

Date: 11/27/2008 9:24:22 PM
Author: LostSapphire
What''s the emotie for scared?


LS

Aww, honey.

*hugs* Hopefully things will continue to improve. Keep thinking positively--one day at a time!

 

[bee*]

I hope that the tests all go well for you LS. I''ll keep absolutely every crossed for you and continued hugs are being sent.

 

[katebar]

((((((((((Hugs))))))))))))))))) Dear LS sending you the most positive of positive vibes. hang in there girls and when ever you are ready we are here to for you to visit, discuss anything be it bling or other stuff
Kate in Australia

 

[jcarlylew82]

LS- i''m glad for the semi good news. We''ll take what we can, right? i hope your future appointments turn out positive as well.

 

[HollyS]

LS, my heart goes out to you. After reading the descriptions, etc. from the sites you posted, I realize that you have got to be in excruciating pain. I''m so sorry that you are enduring this, and will keep you in my prayers for the pain, and for the very best treatment option.

 

[diamondringlover]

LS you are in my thoughts and prayers

 

[Clairitek]

Thanks for updating us LS. I''ve been thinking about you. I hope you get your appts set up and the figure things out really fast.

 

[LostSapphire]

Date: 11/28/2008 7:33:17 AM
Author: jcarlylew82
LS- i''m glad for the semi good news. We''ll take what we can, right? i hope your future appointments turn out positive as well.

Hello ladies.

my thought for today is: what she said. I''ll take what I can get. So far, 2 of 3 locations have no tumor. FAB.

I find that my fears, anger and sadness get worse with the pain. And it''s always worse at night, so I apologize for these nightly pity-parties.

No word yet re: next appt. They are very heavily booked until XMAS so the faieries are trying to find a little slot for me somewhere in there. Fingers crossed.

LS

 

[ladypirate]

LS, sending prayers and dust that they are able to find a spot for you before the holidays. *Hugs*

 

[Pandora II]

Sorry to hear about your situation LS. I had a lot of investigations for a possible acoustic neuroma a few years ago - turned out to be something completely different causing the symptoms, but was quite scary at the time (although I now know that a) I have a brain and b) it is 100% healthy looking which is a bonus!)

I was in hospital on a chronic pain programme for a few weeks with a girl with TN. It's a horrible condition and I really hope they resolve it for you.

I feel for you so much on the Tegretol - I took it for a year for my bipolar and had an awful time with the side effects. To the point I refused any meds for nearly 4 years afterwards.

I now take Lamictal which is my wonder drug - I only need 100mg a day (v 1600mg Tegretol), I have ZERO side effects on it and, best of all it works wonders on the nerve pain I have in my legs (I have spinal stenosis and 2 herniated discs that are inoperable at present).

I believe Lamictal has done quite well in tests for trigeminal neuralgia - might be worth seeing if you could switch drugs. Gabapentin is also supposed to be good - although I never thought much of it as far as nerve pain is concerned.

Hope you get some good news soon.

ETA: There is a risk of Steven-Johnson's syndrome with the Lamictal, but the chances of getting it are hugely reduced if you titrate up slowly (I do 25mg increments every 2/3 weeks - I got a lot of pain relief on 25mg alone) so don't let it put you off. I'm taking it still and I'm 4 months pg - it's by far the safest AED on the market.

 

[gwendolyn]

Date: 11/28/2008 7:55:10 PM
Author: ladypirate
LS, sending prayers and dust that they are able to find a spot for you before the holidays. *Hugs*

Ditto, I will keep thinking of you and hoping they can find some time for you soon. Thanks for checking in, and please don''t feel badly for posting less than cheery comments--we''re here to hear the hard stuff that''s bothering you and getting you down, so we can try to help you feel more positively! *hugs*

 

[coatimundi_org]

((((HUGS)))) LS
just now seeing this thread.
Hope you are well today, dear.
You are in my thoughts.

 

[jcarlylew]

Date: 11/29/2008 2:13:48 PM
Author: gwendolyn

Date: 11/28/2008 7:55:10 PM
Author: ladypirate
LS, sending prayers and dust that they are able to find a spot for you before the holidays. *Hugs*

Ditto, I will keep thinking of you and hoping they can find some time for you soon. Thanks for checking in, and please don''t feel badly for posting less than cheery comments--we''re here to hear the hard stuff that''s bothering you and getting you down, so we can try to help you feel more positively! *hugs*

Is thirtto a word?

I hope you find an appointment spot real soon!

And do not think for one moment that sharing your pains and fears is a pity party! You have a family here, and we''re here to help you talk it out!

 

[LostSapphire]

Date: 11/29/2008 11:51:39 AM
Author: Pandora II
Sorry to hear about your situation LS. I had a lot of investigations for a possible acoustic neuroma a few years ago - turned out to be something completely different causing the symptoms, but was quite scary at the time (although I now know that a) I have a brain and b) it is 100% healthy looking which is a bonus!)

I was in hospital on a chronic pain programme for a few weeks with a girl with TN. It's a horrible condition and I really hope they resolve it for you.

I feel for you so much on the Tegretol - I took it for a year for my bipolar and had an awful time with the side effects. To the point I refused any meds for nearly 4 years afterwards.

I now take Lamictal which is my wonder drug - I only need 100mg a day (v 1600mg Tegretol), I have ZERO side effects on it and, best of all it works wonders on the nerve pain I have in my legs (I have spinal stenosis and 2 herniated discs that are inoperable at present).

I believe Lamictal has done quite well in tests for trigeminal neuralgia - might be worth seeing if you could switch drugs. Gabapentin is also supposed to be good - although I never thought much of it as far as nerve pain is concerned.

Hope you get some good news soon.

ETA: There is a risk of Steven-Johnson's syndrome with the Lamictal, but the chances of getting it are hugely reduced if you titrate up slowly (I do 25mg increments every 2/3 weeks - I got a lot of pain relief on 25mg alone) so don't let it put you off. I'm taking it still and I'm 4 months pg - it's by far the safest AED on the market.

Thank you Pandora, for taking the time to post what you did. I am so sorry to hear of the pain you have in your legs. Hopefully, one day the herniated discs can be dealt with surgically....is there a possibility of having that fixed after your baby is delivered?

The first tumor I had 15 years ago WAS an acoustic neuroma. You're right, pretty scary, but at least one gets confirmation that one has a brain. And I know because I've seen it!

The Trigeminal Neuroma is considered secondary to something else. We've ruled out the AN on the left side of my brain (1st one was on the right), and a tumor on the balance nerve. So they're trying to find it on the trigeminal nerve, and are having some difficulty.

There is the possibility of surgery to block the nerve completely. It is almost the same as the surgery I had for the AN, except instead of removing a tumor, they put in a gortex pad to block the nerve endings.

The pain is absolutely debilitating. The neurosurgeons are concerned that at 800mg of Tegratol, my side affects are already problematic: the biggest one is my difficulty in 'finding words' lately. I feel so STUPID. Also, the pain breaks through anyways, but it is at least within somewhat tolerable limits if I lay down and get my heart rate slowed up. I am still working but after 4 weeks on the tegratol I am finding more and more errors in my work. So this is not an option for a long term fix. My family doctor wants to try something different but the neurosurgeon wants me to stay on the tegratol for a while. And considering he's one of the best in the country, I'm deferring to his opinion.

So we hang in there and put up XMAS lights to keep my brain occupied...that, and online shopping.....

LS

 

[iluvcarats]

Oh LS, I just saw this!

I am sending good thoughts and prayers and sprinkling dust. HUGS

 

[LostSapphire]

Date: 11/29/2008 2:13:48 PM
Author: gwendolyn

I will keep thinking of you and hoping they can find some time for you soon. Thanks for checking in, and please don't feel badly for posting less than cheery comments--we're here to hear the hard stuff that's bothering you and getting you down, so we can try to help you feel more positively! *hugs*

Hello Gwendolyn and all of the rest of you, for being angels..

Thank you and everyone else for posting such wonderful thoughts.

When the pain gets bad in the evenings and into the night, I read your posts and it helps.

I truly believe that there is a Chorus of Angels looking out for me and they will bring me through to a positive outcome.

I've had a brain tumor before, so I have an idea of what's in store once they make a hole in your head. It's just that I don't know how many miracles one person gets in their lifetime.

Thank you all for your positive thoughts, prayers, affirmations and good vibes. They are helping.

In the meantime, I wait for the next step, which is to see the neurosurgeon in charge of the facial nerve division....maybe I can get me a face lift while I'm at it?

LS

 

[LostSapphire]

P.S. Gwendolyn:

I''m feeling that this thread is too depressing to be in the Ladies in Waiting thread. If you think so too feel free to ask the Mods to move it to maybe, hangout?
LS

 

[Deelight]

LS I don''t really have anything in terms of help or advice to offer just wanted to post and let you know I am still sending my support and prayers your way.

 

[prettylnpink419]

LS my thoughts and prayers are with you and your family right now. I know how scary this all can be. Just remember that miracles happen every day and I know from personal experience that it is possible to have more than 1 in a lifetime. Obviously my experiences are the same as yours but when I was in 4th grade, my mom, sister, and I were in a bad car accident. As a result of a back injury my mom suffered, during scans, etc they found out she had thyroid cancer, and the worst degree of it possible. After 2 surguries she has been in remission for over 15 years now. To me, that was a miracle, she never would have known about it if it wasn''t for that accident. 2nd, in 2004 my apartment burnt down. I left for a quick run to the grocery store at 4:45 and by 5:16 there was nothing left to our apartment. We lost EVERYTHING, including my roommates dog, and my cat. I only lived there for 13 days, no renter''s insurance, etc. Where is the miracle in that? My dog, Maisie. She is definitely the love of my life. She is a miniature long hair dachshund. He was only about 4 months at the time and when I was leaving she ran over to the door and made her sad puppy dog face saying, "Please take me". So I did. Who takes a dog to the grocery store? I''m definitely not that type of person, but for whatever reason, I took her that day. She was the miracle that got me and my roommate through the next several months of hell. We faced a 1 million dollar law suit b/c they said a candle on our balcony reignited itself over 4 hours after it had been put out so they blamed the whole thing on us. If it wasn''t for Maisie, it would have been very hard to get out of bed in the morning. As a result of the fire, I learned that many of my good friends were not friends at all and many strangers became great friends. Another reason I believe in miracles is because of my grandmother. I was very close with her and she passed away when I was a senior in high school. I was once told that lady bugs are a sign of someone you loved that passed away watching over you. So since she passed, every time I''ve ever been sad, scared, lonely, etc...I ALWAYS see a lady bug. The day of the fire as I was rushing home from the grocery store after I got the call, there were 4 lady bugs on my steering wheel. When my high school boyfriend broke up with me and I was devastated, there were 2 lady bugs flying around my bedroom...in January!

I know I kind of went on a tangent but the moral of the story is...never stop believing in miracles, not matter how many you''ve had! And the rest of us will keep praying with you too!

 

[LostSapphire]

Date: 11/30/2008 9:01:18 PM
Author: prettylnpink419

I know I kind of went on a tangent but the moral of the story is...never stop believing in miracles, not matter how many you've had! And the rest of us will keep praying with you too!

That's just what this girlie needs tonight, prettyInpink419! Thank you.

LS

 

[LostSapphire]

Gwendolyn Sweetie: I hope you don''t mind but I messaged Admin and suggested they move this thread to Hangout, perhaps. I just think LIW should be a happy, anticipatory place. And I am 23 years AWAY FROM being a LIW!

Just sitting here with an icepack on my face trying to get through the night. Some days the pain is tolerable. Other days I feel like clawing my face off. My jaw feels like I need 6 root canals...kind of like this guy:

No word yet on the next appt with the neurosurgeon. Soon please!
LS

 

[princesss]

Date: 11/30/2008 8:20:30 PM
Author: LostSapphire
It''s just that I don''t know how many miracles one person gets in their lifetime.

LS

I know the answer to this one.

Lots.

LS, we get many miracles in our lifetime, big ones and little ones. Maybe I''m inclined to see miracles in things that others don''t, but I believe once you''ve experienced one, you''re opened up to more because you know they''re out there and you''re willing to accept them.

At 17 I was diagnosed with a heart condition that is found most frequently in 50+ year old men on autopsy. It was a miracle I even noticed the symptoms, and I will swear to this day that my math teacher saved my life. After about 5 years of treatment, I have been told that if I take care of myself, I could be symptom free in 10 years. Truly a miracle. Now, at 22, I''ve been seeing a pulmonologist due to trouble breathing, and found out that the answer to my troubles could be as simple as losing the weight I gained in school. And if it''s not that simple, I have a doctor willing to accept that his theory was wrong, and who will go after the problem and examine every nook and cranny of my heart and lungs until we have an answer. Simple enough, but to me, it''s a miracle. I''ll have my life back.

Miracles happen, and lots of them can happen in your life. Really and truly.

 

[LostSapphire]

Date: 12/2/2008 9:40:28 PM
Author: princesss

Date: 11/30/2008 8:20:30 PM
Author: LostSapphire
It's just that I don't know how many miracles one person gets in their lifetime.

LS

I know the answer to this one.

Lots.

LS, we get many miracles in our lifetime, big ones and little ones. Maybe I'm inclined to see miracles in things that others don't, but I believe once you've experienced one, you're opened up to more because you know they're out there and you're willing to accept them.

At 17 I was diagnosed with a heart condition that is found most frequently in 50+ year old men on autopsy. It was a miracle I even noticed the symptoms, and I will swear to this day that my math teacher saved my life. After about 5 years of treatment, I have been told that if I take care of myself, I could be symptom free in 10 years. Truly a miracle. Now, at 22, I've been seeing a pulmonologist due to trouble breathing, and found out that the answer to my troubles could be as simple as losing the weight I gained in school. And if it's not that simple, I have a doctor willing to accept that his theory was wrong, and who will go after the problem and examine every nook and cranny of my heart and lungs until we have an answer. Simple enough, but to me, it's a miracle. I'll have my life back.

Miracles happen, and lots of them can happen in your life. Really and truly.

Thank you Princess.

I am so pleased for you, that you have been diagnosed appropriately (so far!) and that you are on the receiving end of miracles. And I agree, that once a person is open to them, they just show up. "expect a miracle" has been my mantra for 25 years now.

It's just getting a little tiresome to ask: "ok God, do ya have one more in your bag of tricks for me?".

Iit currently takes a forklift to retrieve my medical file from storage at the Dr.'s office. Chapter and verse of the many medical issues would bore you all to death. I'm just starting to think that I'm running out of miracles............like cats who have 9 lives: what happens at 10??

Sorry, I get like this when the pain is unbearable. Today has been hard to take. So I went out and bought a bunch of XMAS lights and am trying to feel better.

<<<< this is my face, gettin' a bit of a palsy right now on one side.

Maybe it's a sinus infection! (just trying to find the humour in this mess! it's NOT)

Thank you all for listening. I appreciate having a place to whine.............

LS

 

[LtlFirecracker]

I am sorry that you are going through this, I agree with you...I hate the word tumor too. My heart breaks every day for people who are dealing with what you are dealing with.

There is no such thing as too many miracles for one person.

 

[gwendolyn]

Date: 12/2/2008 9:20:47 PM
Author: LostSapphire
Gwendolyn Sweetie: I hope you don''t mind but I messaged Admin and suggested they move this thread to Hangout, perhaps. I just think LIW should be a happy, anticipatory place. And I am 23 years AWAY FROM being a LIW!


Just sitting here with an icepack on my face trying to get through the night. Some days the pain is tolerable. Other days I feel like clawing my face off. My jaw feels like I need 6 root canals...kind of like this guy:

No word yet on the next appt with the neurosurgeon. Soon please!

LS

Oh honey, of course I don''t mind!! This thread was created for you, so whatever works for you, works for me! *hugs* I hope you hear from your neurosurgeon soon, sweetpea, and that you can get a break from the pain soon too.

 

[allycat0303]

Lost Sapphire:

I''m thinking of you. Hope you get some good news soon! Keep us updated. And in the mean time, continue being as strong and postive as you ALWAYS are. We''re all here rooting for you.