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

[LostSapphire]

The monster is well and fully awake, since yesterday he's been asserting himself rather nastily.....

along with a few more symptoms that have me a bit concerned....

10 days to the news....

Kittens always help! thanks.
LS

 

[AmberGretchen]

So sorry to hear of this return in symptoms

Still keeping fingers (and paws) crossed for good news - my ragdoll wannabe kitty would like to say he hopes you feel better soon:

 

[diamondseeker2006]

LS, this seems like an emergency to me! I honestly do not understand how they can make you wait another week and a half. If it gets worse, can you go to a hospital emergency room????

 

[coatimundi_org]

more ((((hugs)))) to you!

 

[LostSapphire]

Date: 1/4/2009 4:22:27 PM
Author: diamondseeker2006
LS, this seems like an emergency to me! I honestly do not understand how they can make you wait another week and a half. If it gets worse, can you go to a hospital emergency room????

Diamondseeker:

Thank you for your concern. I'm not falling apart, really (at least, not ALL the time!

I am actually thrilled to have an appt on the 14th. This doc is THE GUY for this problem and am his first patient in his first clinic of 2009 ( he is away this week). Besides that, my original neurosurg specifically wants me to see him as they are co-consulting on the case.

I'd rather wait than get some doc who doesn't understand what's going on. This diagnosis is complicated at best, and not easily understood by many in the medical field....even my family doc kind of throws up her hands and flat-out tells me that she's never had a patient with this....geez, nothing to instill a little confidence in a patient.

In the meantime, however, I have an appt on Tuesday morning with the neurologist to discuss the medication. Keep in mind that this is nerve pain originating from my brain stem: I have buckets of Percocet and Oxy-Contin here and might as well pitch them out the window as they don't touch the pain at all.

The medication they use for this takes a couple of weeks to really 'kick in'. If I chose to, I could go onto a morphine pump or something. But that involves a total change in lifestyle for me: ie: no more work (which I LOVE) and being a bit zombie-like. That isn't an option I'm prepared to exercise yet. Part of my pain strategies is to use distraction. for instance: work, shopping (when I can) etc....so to really kill the pain also takes away something that gives me a reason to get out of bed in the morning.

One of my fears is that I let the pain "win" and turn into a hermit. So I am trying to retain some functionality. So that means not being medicated too heavily...I'd also probably lose my sense of humour!

So no worries...I'll just keep enjoying the puppy and kitten pics and the wonderful warm hugs from you all here.

LS

 

[Skippy123]

hugs to you sugar and strong prayers.

 

[geckodani]

You keep amazing me, LS, with your resiliancy! ((HUGS)) and prayers to you!

 

[Kaleigh]

LS,
You have such strength, you amaze me. You have such a way about you, something I really admire. I wish you all the best on Tuesday. Sending big prayers your way, and some hugs too.

 

[marcy]

Lost Sapphire, you are amazing that you can retain a sense of humor through this. I am glad the 14th is getting closer all the time. Hugs to you.

 

[LostSapphire]

Your prayers are working: the Neurosurgeons'' office just called to say they have a cancellation on Wednesday this week!

LS

 

[geckodani]

Hoping they can give you some good news! Or at least news!

 

[~*Alexis*~]

thats great news!!!!

I think things will turn out better in 2009 for you!!!

 

[pjean]

Well then, we''ll keep praying! Both for scientists to get a handle on neurogenic pain so that other people have better treatment options, and that they can find some existing drug or cocktail that will help you at least a little.

Fingers crossed for Wednesday and for the 14th.

 

[risingsun]

 

[Catmom]

OH LS, that is fantastic news that you can get in THIS WEEK!!!!! Stay strong and remember we are here for you when you need us!

 

[LostSapphire]

Date: 1/5/2009 12:09:47 PM
Author: Catmom
OH LS, that is fantastic news that you can get in THIS WEEK!!!!! Stay strong and remember we are here for you when you need us!

Scared sh*tless now that it''s so close....and I''ve already had ONE brain surgery...

LS

 

[pjean]

Date: 1/5/2009 1:49:52 PM
Author: LostSapphire

Date: 1/5/2009 12:09:47 PM

Scared sh*tless now that it''s so close....and I''ve already had ONE brain surgery...

LS

Totally understandable. PS dust for you, tons and tons!

But at least you''ll know, you know?

 

[Linda W]

LS: Sending you a great big hug. I can imagine how scared you are. We are here for you. !!!!!!!!!!!!!!! I am so glad you can get in this week.

 

[AmberGretchen]

So glad they got you in this week!!! YAYAY

Your strength is truly inspiring - I will keep sending healing thoughts and prayers your way, and will keep my fingers crossed extra-hard for good news on Wednesday.

 

[Catmom]

Date: 1/5/2009 1:49:52 PM
Author: LostSapphire

Date: 1/5/2009 12:09:47 PM
Author: Catmom
OH LS, that is fantastic news that you can get in THIS WEEK!!!!! Stay strong and remember we are here for you when you need us!

Scared sh*tless now that it''s so close....and I''ve already had ONE brain surgery...

LS

I understand exactly where you are coming from. If my heart hasn''t healed by April [and at last check it hadn''t] then I am looking at a second heart surgery. All we can do is stay strong and have faith that everything will be okay. The good news is that hopefully by Wednesday you will know what you are dealing with and can make decisions from there. Stay positive and know that there is a tremendous amount of PS dust coming your way. Plus lots of big hugs!

 

[diamondseeker2006]

Date: 1/5/2009 8:27:39 AM
Author: LostSapphire
Your prayers are working: the Neurosurgeons'' office just called to say they have a cancellation on Wednesday this week!

LS

That actually brought tears to my eyes! Thank God, literally.

 

[LostSapphire]

Date: 1/5/2009 3:19:57 PM
Author: Catmom
I understand exactly where you are coming from. If my heart hasn''t healed by April [and at last check it hadn''t] then I am looking at a second heart surgery. All we can do is stay strong and have faith that everything will be okay. The good news is that hopefully by Wednesday you will know what you are dealing with and can make decisions from there. Stay positive and know that there is a tremendous amount of PS dust coming your way. Plus lots of big hugs!

Maybe with the positive energy being created here, it will ''rub off'' on you too? It''s hard to be scared, isn''t it? I''m sorry to hear about your heart problems. What was the 1st surgery for?

LS

 

[Catmom]

Date: 1/5/2009 9:36:40 PM
Author: LostSapphire

Date: 1/5/2009 3:19:57 PM
Author: Catmom
I understand exactly where you are coming from. If my heart hasn''t healed by April [and at last check it hadn''t] then I am looking at a second heart surgery. All we can do is stay strong and have faith that everything will be okay. The good news is that hopefully by Wednesday you will know what you are dealing with and can make decisions from there. Stay positive and know that there is a tremendous amount of PS dust coming your way. Plus lots of big hugs!

Maybe with the positive energy being created here, it will ''rub off'' on you too? It''s hard to be scared, isn''t it? I''m sorry to hear about your heart problems. What was the 1st surgery for?

LS

I had a mini-stroke last February and after a lot of testing they found I had a hole and floppy wall between the atrial chambers of my heart. It allowed unfitered blood to go to the brain, and if you have any kind of clots can cause a stroke. Last April I had a device inserted in my heart to shore up the wall and close the hole. I had some complications that I''ve finally recovered from but at last check in October the hole was still open. If it doesn''t close after a year then either a second device will have to be inserted on top of the other device or I''ll have to have open heart surgery to take out the old device and build up the wall and close the hole. Apparently the instance of stroke is 4x as much if the hole doesn''t close on it''s own so something will definitely have to be done. I do understand about not wanting a second surgery. Let''s hope that dust rubs off on us both!

 

[LostSapphire]

Date: 1/5/2009 11:16:29 PM
Author: Catmom
I had a mini-stroke last February and after a lot of testing they found I had a hole and floppy wall between the atrial chambers of my heart. It allowed unfitered blood to go to the brain, and if you have any kind of clots can cause a stroke. Last April I had a device inserted in my heart to shore up the wall and close the hole. I had some complications that I''ve finally recovered from but at last check in October the hole was still open. If it doesn''t close after a year then either a second device will have to be inserted on top of the other device or I''ll have to have open heart surgery to take out the old device and build up the wall and close the hole. Apparently the instance of stroke is 4x as much if the hole doesn''t close on it''s own so something will definitely have to be done. I do understand about not wanting a second surgery. Let''s hope that dust rubs off on us both!

It must be very difficult to live on a day-to-day basis wondering if it''s working or not. I would find that very stressful and difficult to handle.....like living on the ''edge'' of a surgery all the time. So much easier IMO to just know they FIXED IT!

Here''s hoping to lots of active growth and a positive report in april!
LS

 

[Lorelei]

Sending out hugs and prayers to you both LS and M

LS- that is fantastic news that the cancellation has got you an appt now!

 

[Ellen]

Date: 1/6/2009 6:01:15 AM
Author: Lorelei
Sending out hugs and prayers to you both LS and M

LS- that is fantastic news that the cancellation has got you an appt now!

Yes.

 

[Catmom]

Date: 1/6/2009 5:55:21 AM
Author: LostSapphire

Date: 1/5/2009 11:16:29 PM
Author: Catmom
I had a mini-stroke last February and after a lot of testing they found I had a hole and floppy wall between the atrial chambers of my heart. It allowed unfitered blood to go to the brain, and if you have any kind of clots can cause a stroke. Last April I had a device inserted in my heart to shore up the wall and close the hole. I had some complications that I''ve finally recovered from but at last check in October the hole was still open. If it doesn''t close after a year then either a second device will have to be inserted on top of the other device or I''ll have to have open heart surgery to take out the old device and build up the wall and close the hole. Apparently the instance of stroke is 4x as much if the hole doesn''t close on it''s own so something will definitely have to be done. I do understand about not wanting a second surgery. Let''s hope that dust rubs off on us both!

It must be very difficult to live on a day-to-day basis wondering if it''s working or not. I would find that very stressful and difficult to handle.....like living on the ''edge'' of a surgery all the time. So much easier IMO to just know they FIXED IT!

Here''s hoping to lots of active growth and a positive report in april!
LS

It''s the "am I going to have another stroke today" thoughts that can get you down. It can be stressful but I take my meds like a good little girl and I tell my heart every morning.............grow damn scar tissue, GROW!

Then I try and not think about it any more. I am lucky that the pain is gone and I don''t have to deal with that like you do. Please know that my thoughts will certainly be with you tomorrow! I hope you will be able to get to a pain free state quickly and that horrible monster gets kicked to the curb quickly!

 

[Linda W]

Date: 1/5/2009 11:16:29 PM
Author: Catmom

Date: 1/5/2009 9:36:40 PM

Author: LostSapphire

Date: 1/5/2009 3:19:57 PM

Author: Catmom

I understand exactly where you are coming from. If my heart hasn''t healed by April [and at last check it hadn''t] then I am looking at a second heart surgery. All we can do is stay strong and have faith that everything will be okay. The good news is that hopefully by Wednesday you will know what you are dealing with and can make decisions from there. Stay positive and know that there is a tremendous amount of PS dust coming your way. Plus lots of big hugs!

Maybe with the positive energy being created here, it will ''rub off'' on you too? It''s hard to be scared, isn''t it? I''m sorry to hear about your heart problems. What was the 1st surgery for?


LS

I had a mini-stroke last February and after a lot of testing they found I had a hole and floppy wall between the atrial chambers of my heart. It allowed unfitered blood to go to the brain, and if you have any kind of clots can cause a stroke. Last April I had a device inserted in my heart to shore up the wall and close the hole. I had some complications that I''ve finally recovered from but at last check in October the hole was still open. If it doesn''t close after a year then either a second device will have to be inserted on top of the other device or I''ll have to have open heart surgery to take out the old device and build up the wall and close the hole. Apparently the instance of stroke is 4x as much if the hole doesn''t close on it''s own so something will definitely have to be done. I do understand about not wanting a second surgery. Let''s hope that dust rubs off on us both!

I am sending tons of fairy dust and love to both of you dear ladies. Also, a great big hug too

 

[LostSapphire]

Hi everybody.

So the Monster is really awake today.

It''s about a 15 on a scale of 1 to 10. And the ice pick has just started whacking away at my teeth. whacka whacka whacka
Maybe that''s good, because tomorrow I see the neurosurgeon. Probably would be good to have such a vivid memory of what this thing is capable of....rather than being drugged to oblivion and in La La land, unable to tell him what it''s like.

So here goes nuthin folks. Will check back in with you all tomorrow with a report.

Thanks again for the prayers, kindness, puppies, kittens and baby pics.

Nighty night.

LS

 

[LostSapphire]

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