12-18 month support

[[Sk...]]

MIchael, my break was yesterday and it is over.

 

It was really nice, we went for a ride out of town, to check out a potential house to live in. We are trying to find a place that would accomodate my mom as well. Anyway, I get the impression that wd likes taking trips by car !!

When we were coming south, I was in a wave and as  soon as we started our trip, the wave stopped ! Could it be as simple as that ? Probably not, probably just a coincidence.

 

But you know yesterday, I did other forbidden things. LIke the sun, usually heat and sun give me sun strokes and make my wave worse. Yesterday, I got by, all in all, and mr SKy got a sunstroke ! That's how hot it was !

 

HOw undelicate for me to talk about sun and heat when you are in the worst winter ever !

 

Anyway, now it's business as usual. SIck thoughts too, so tired of those. Do you think your perception of reality is better ? 

[[Sk...]]

And I had an ice cream. It was too sweet, my teeth were cringing, I am not used to overly sweet  things anymore. So I did not really  like it, but I liked what it stood for, you know ?

It was sunny, the birds were singing, the girl at the store was super friendly. So that was what I was really getting. Anyway, maybe it was not tasty , but it did not make me sick either, which is great. 

We even had a picnic in the park, the birds were singing there too,  and dogs were playing on the grass and dog owners were lazying in the sun. One dog came to beg us for our food, mr Sky gave some to him, whole weat pizza  made by Mr Sky and the dog went " Uggh, gross !"  and left it, of course.

 

Unfortunately, mr SKy felt sick when we got back, too much sun  for him, I guess.

 

 

[[No...]]

Sky ... good to hear you got out and around yesterday ...

 

My "perception of reality getting better" ... hmmm ...

 

I think I know what you are asking ... so the response would be "yes" ...

 

What comes to mind for me when you ask is ... I am getting moments of happiness again ... and their strength and duration is increasing ... it has been a long, long time for me since I have felt any sustained happiness ...

 

And it does not feel like happiness due to anything right now ... rather a general kind of feeling ... "I am happy" ... it still comes and goes, fades in and out ... but it is there ... another part of this recovery for me ...

 

 

 

 

[[Sk...]]

Sky ... good to hear you got out and around yesterday ...

 

My "perception of reality getting better" ... hmmm ...

 

I think I know what you are asking ... so the response would be "yes" ...

 

What comes to mind for me when you ask is ... I am getting moments of happiness again ... and their strength and duration is increasing ... it has been a long, long time for me since I have felt any sustained happiness ...

 

And it does not feel like happiness due to anything right now ... rather a general kind of feeling ... "I am happy" ... it still comes and goes, fades in and out ... but it is there ... another part of this recovery for me ...

 

What I really meant, is do you thing you are assessing events correctly ? I too have a lot of moments of serenity, even bliss, but they come with moments of doom and imminent catastrophe. Like with my mum, I am suspending judgement of events concerning her. Before my Ct, I was comfortable around her now I worry and see death  around every  corner. Maybe it is, maybe it isn't, I hope to get better in that sense.

 

I have quit worrying about my own health, at least not all the time and I project those same fears on her and mr Sky. So that is why I think my thinking is still flawed.

 

Oh well, we are getting through this. Slowly. 

[[No...]]

Sky ... yes ... my thinking and perception still has many flaws ... I see what you are asking ...

 

My "connections" with those around me are still not well focused a lot of the time ... my thoughts are still messy ... and I can say they are getting better ... and since I am still healing this "un-clarity" will likely continue for a while yet ...

 

My sense is we are all "okay" ... and things are still messy sometimes ...

[[No...]]

Getting drowsy ... time to try for some more sleep ...

[[Ko...]]

Just wanted to say hello to everyone. I'm not up to posting much, but I'm keeping up with all of you.

Most of us are really suffering now and I think surprised that we are so far out. We need each other's support more than ever now. Yes, I know your real. 

 

Glad to hear Nova found a knowledgeable and caring doctor. Dioes make it easier when seeking help.

 

I mentioned the Coleman Institute and Flumazenil infusions a couple of weeks ago. I am going to try it.  I'm leaving for Seattle on Easter Sunday. I will go to the medical clinic on Monday to begin 4 hrs of Flumazenil infusion. I will do that for 7 days straight. Flumazenil is supposed to remove all Benzos and relieve all side effects. This is experimental and they have given me no guarantees. It has worked for some, but not for others. I'm hoping that it will wake up my Gabba neurotransmitters or jumpstart them into complete recovery. 

My mother is going with me and I'm staying at a nearby hotel. The procedure cost $3600 which I think is reasonable if I come out with no side effects. I've been sick for so long I'm not sure what it will feel like to be well.

Anyhow, I'll try to keep you posted while I'm going through the procedure. 

 

Korbe

 

 

 

[[Co...]]

Hi Korbe, we will be following you with hopes of success for you. You will be in my state. I am on the other side of the mountains. Seattle is beautiful in the spring. Nice that your mother is going with you.

....I truly am hoping the very best outcome for you. coop

[[mr...]]

I wish you well, Korbe I know that there are some that may disagree with your decision, but I have always been a firm believer that it is only ourselves that can make decisions for ourselves - so in that, I completely support you

 

Do keep us posted on how you're doing; you will be in my thoughts I'm sure Take care buddy,

 

Mrs.

[[Co...]]

Well friends, I am 99% sure that I am in the grips of a full out Meniers Disease bout. Motion sickness with any body movement nausea and anxiety. The cardinal sx . Full crackling ears.  Only thing to do is stay flat as much as possible...I haven't had an attack for a long time so guess I am down for a few days. No use to take the dramamine or anything else it just burns itself out eventually. This is exactly how I was prescribed ativan except the initial bout was violent dizziness and panic. Subsequent bouts have been more like bad flu with motion sickness if you so much as turn your head. On the up side my actual w/d wave seems better. Depression is better...d/r is better believe it or not health fears are better.. My daughter will come and baby me and that will help. Like w/d , the only thing to do with Meniers is to get through it...so I might be on frequently passing time ..

.....I hope everyone is waking up to a very good Easter Weekend...love to every one of you, my friends.  .coop

[[Sk...]]

Just wanted to say hello to everyone. I'm not up to posting much, but I'm keeping up with all of you.

Most of us are really suffering now and I think surprised that we are so far out. We need each other's support more than ever now. Yes, I know your real. 

 

Glad to hear Nova found a knowledgeable and caring doctor. Dioes make it easier when seeking help.

 

I mentioned the Coleman Institute and Flumazenil infusions a couple of weeks ago. I am going to try it.  I'm leaving for Seattle on Easter Sunday. I will go to the medical clinic on Monday to begin 4 hrs of Flumazenil infusion. I will do that for 7 days straight. Flumazenil is supposed to remove all Benzos and relieve all side effects. This is experimental and they have given me no guarantees. It has worked for some, but not for others. I'm hoping that it will wake up my Gabba neurotransmitters or jumpstart them into complete recovery. 

My mother is going with me and I'm staying at a nearby hotel. The procedure cost $3600 which I think is reasonable if I come out with no side effects. I've been sick for so long I'm not sure what it will feel like to be well.

Anyhow, I'll try to keep you posted while I'm going through the procedure. 

 

Korbe

 

KOrbe, I wish you the best, I hope you will keep us posted. You are so brave, I would not dare. Take care, I hope it goes well.

[[No...]]

Coop ... take care ... glad you have someone there to be with you ... and I hear you know how to do this ... 

[[No...]]

Korbe ... take care ... I hope you find what you need ...

 

Be Well ...

[[No...]]

Hi ... woke up this morning is lousy land after some relief yesterday evening ... and I am in a lousy mood ... feel like I want to wreck something ...

 

And it is just a mood for me ... it will pass...

 

This morning's loaf of bread got kneaded within an inch of it's life ... didn't help me but the bread enjoyed it ...

 

Hope we all have a quiet weekend ... 

[[Fr...]]

Green and Nova - it's nice to hear you're seeing breaks and improvement. 

Coop - I'm sorry you're going through so much right now and I wish you breaks real soon.

Mrs - glad to hear you're doing so well.

Korbe - I hope the flumazenil works for you.  Keep us posted.

 

As for me, I am still in a tough place.  I get brief breaks but am mostly sick.  I don't look here much anymore because the collective suffering affects me.  I just try to cope and survive this.  My sxs rotate between extreme pain, bladder issues, sleep issues, a feeling like my neck is closing in, extreme neck pain and stiffness and mental issues can be bad, then lift and go to pain issues.  Life is not good for me.

 

I hang on to hope and keep trying.

[[dr...]]

Hi all...lots on the thread. 

 

Coop-at least you know what it is. Stay flat and in good spirits. This will pass

 

Korbe-please keep us posted and good luck.  I believe the worst case scenario will be that it's just temporary. 

 

Lisa-totally get it and I need breaks too.  We all suffer too much.

[[No...]]

Hi Lisa ... some days I get discouraged with the relentlessness of this process ... and like you all I can do is keep plodding ahead ...

 

"I hang on to hope and keep trying." ... seems we can't ask anymore of ourselves ...

 

Be Well ...

[[Co...]]

Nova...those are bound to be great cinnamon rolls . Pound away. You need to write a cookbook...Cooking Your Way Through W/D....I really hope your day opens up to a better place.

...Yep, I know how to do Meniers...it's a chronic ear condition and for me part of the RA spectrum. I don't get very many bouts of it. It's a very self respecting illness, it makes you miserable for a little while and then packs it's bags and leaves. In other ways I am feeling a lot better.

....Where's Miley to sing to you I Came In Like A Wrecking Ball.. ..carry on Nova with the cooking with attitude....coop

[[Co...]]

Lisa, I am really sorry to hear that those nice days you were enjoying some days back have faded. It's so hard to watch good days dissolve. They will come back Lisa. ...Yep, sometimes are thread has group waves going on. We all take breaks away from it too. We also get group windows and hear of everyone's triumphs and then we all benefit from the encouragement.

  ...sending you thoughts for sunbreaks and better days...love to you.....coop

[[Gr...]]

Green ... good to hear you are getting a break ... I am with you on the chocolate ... whatever soothes in the moment ...

 

[[Gr...]]

MIchael, my break was yesterday and it is over.

 

It was really nice, we went for a ride out of town, to check out a potential house to live in. We are trying to find a place that would accomodate my mom as well. Anyway, I get the impression that wd likes taking trips by car !!

When we were coming south, I was in a wave and as  soon as we started our trip, the wave stopped ! Could it be as simple as that ? Probably not, probably just a coincidence.

 

But you know yesterday, I did other forbidden things. LIke the sun, usually heat and sun give me sun strokes and make my wave worse. Yesterday, I got by, all in all, and mr SKy got a sunstroke ! That's how hot it was !

 

HOw undelicate for me to talk about sun and heat when you are in the worst winter ever !

 

Anyway, now it's business as usual. SIck thoughts too, so tired of those. Do you think your perception of reality is better ?

 

sunny Italy sounds so nice.  Is your move imminent?  You sold the house, I guess?

 

Like dogs, withdrawal loves a ride in the car, looking out the window, best form of distraction.

[[Gr...]]

Sky ... good to hear you got out and around yesterday ...

 

My "perception of reality getting better" ... hmmm ...

 

I think I know what you are asking ... so the response would be "yes" ...

 

What comes to mind for me when you ask is ... I am getting moments of happiness again ... and their strength and duration is increasing ... it has been a long, long time for me since I have felt any sustained happiness ...

 

And it does not feel like happiness due to anything right now ... rather a general kind of feeling ... "I am happy" ... it still comes and goes, fades in and out ... but it is there ... another part of this recovery for me ...

 

What I really meant, is do you thing you are assessing events correctly ? I too have a lot of moments of serenity, even bliss, but they come with moments of doom and imminent catastrophe. Like with my mum, I am suspending judgement of events concerning her. Before my Ct, I was comfortable around her now I worry and see death  around every  corner. Maybe it is, maybe it isn't, I hope to get better in that sense.

 

I have quit worrying about my own health, at least not all the time and I project those same fears on her and mr Sky. So that is why I think my thinking is still flawed.

 

Oh well, we are getting through this. Slowly. 

 

Sky, the fears for loved ones, I believe, are withdrawal.  whenever my younger son left the house, I was sure he would be killed in an accident.  that was last year.

 

recently, this week, he took three days off from work.  I went from rapidly thinking he was fired from his job.  to wondering what possessed him not to go to work.  I immediately thought he was on drugs.  went to obsessive worrying.  then spoke to him, got a good look at him, and clearly he wasn't on drugs.  then, unbelievably, I went to wondering, because he's 20, going on 21, that's the age for young males of onset of schizophrenia.  I read that some place.

 

Today he got up and went to work. 

 

Now, after all that grief, my rational thinking is  that he's 20, immature, like a lot of his peers (meaning less mature than I was at his age)  I think he doesn't take his job as seriously as he should because he's never been fired, and lives at home and doesn't worry about it as much as someone who has a mortgage.  In short, he's an immature 20 year old, and I had him in the throes of a drug habit, or in the alternative severely mentally ill. 

 

Now I'm pretty crazy, but not that crazy.  It's withdrawal.  that is definitely not me.  not that crazy.

[[Gr...]]

Well friends, I am 99% sure that I am in the grips of a full out Meniers Disease bout. Motion sickness with any body movement nausea and anxiety. The cardinal sx . Full crackling ears.  Only thing to do is stay flat as much as possible...I haven't had an attack for a long time so guess I am down for a few days. No use to take the dramamine or anything else it just burns itself out eventually. This is exactly how I was prescribed ativan except the initial bout was violent dizziness and panic. Subsequent bouts have been more like bad flu with motion sickness if you so much as turn your head. On the up side my actual w/d wave seems better. Depression is better...d/r is better believe it or not health fears are better.. My daughter will come and baby me and that will help. Like w/d , the only thing to do with Meniers is to get through it...so I might be on frequently passing time ..

.....I hope everyone is waking up to a very good Easter Weekend...love to every one of you, my friends.  .coop

 

Love to you, too, Coop.  Feel better.  Aren't there medications for that?  other than benzos?  I knew a woman who had a script for vertigo.  hope you're up and around soon.  enjoy the easter holiday.

[[Gr...]]

Just wanted to say hello to everyone. I'm not up to posting much, but I'm keeping up with all of you.

Most of us are really suffering now and I think surprised that we are so far out. We need each other's support more than ever now. Yes, I know your real. 

 

Glad to hear Nova found a knowledgeable and caring doctor. Dioes make it easier when seeking help.

 

I mentioned the Coleman Institute and Flumazenil infusions a couple of weeks ago. I am going to try it.  I'm leaving for Seattle on Easter Sunday. I will go to the medical clinic on Monday to begin 4 hrs of Flumazenil infusion. I will do that for 7 days straight. Flumazenil is supposed to remove all Benzos and relieve all side effects. This is experimental and they have given me no guarantees. It has worked for some, but not for others. I'm hoping that it will wake up my Gabba neurotransmitters or jumpstart them into complete recovery. 

My mother is going with me and I'm staying at a nearby hotel. The procedure cost $3600 which I think is reasonable if I come out with no side effects. I've been sick for so long I'm not sure what it will feel like to be well.

Anyhow, I'll try to keep you posted while I'm going through the procedure. 

 

Korbe

 

Korbe, the very best of luck to you.  Please come back and let us know how it works out.  Even if it doesn't help everyone, clearly it's helping someone, or else they couldn't offer it.  so hopefully you will be someone who is helped.  Good luck.

[[Gr...]]

Green and Nova - it's nice to hear you're seeing breaks and improvement. 

Coop - I'm sorry you're going through so much right now and I wish you breaks real soon.

Mrs - glad to hear you're doing so well.

Korbe - I hope the flumazenil works for you.  Keep us posted.

 

As for me, I am still in a tough place.  I get brief breaks but am mostly sick.  I don't look here much anymore because the collective suffering affects me.  I just try to cope and survive this.  My sxs rotate between extreme pain, bladder issues, sleep issues, a feeling like my neck is closing in, extreme neck pain and stiffness and mental issues can be bad, then lift and go to pain issues.  Life is not good for me.

 

I hang on to hope and keep trying.

 

Hang on, Lisa.  Even when it's hard, what choice do we have, really?  how did the conversation with Britain go?  Were they helpful?