12-18 month support

[[Sk...]]

Hello, buddies.

 

Beulah, you sound so good.  Your good days and bad days are night and day.  I can actually hear them.  And Nova, they're getting very stingy with the good days!

 

I read everybody's stuff.  I'm going to make a quick post and try to get out for a walk, which has not been happening for some reason, in spite of my best intentions.  this is def a game change from whatever I was dealing with before.  As always, it feels like 1 step fwd and 2 back, they say waves and windows; it always feels like chutes and ladders to me. (FJ)

 

My insomnia has cemented into a new sleeping pattern, operative word is sleep, I am sleeping, and I wasn't before.  I think Korbe and I are on the same page with this. Sleep is def not happening until morning has started. that's 8 o'clock a.m. today, until 2 p.m.  and now I'm not so physically fatigued as I am reluctant to "go out there."  it's such a strong aversion to going out, I'd say it was agoraphobia back for a visit, but it's not fear based, because when I have to go, I can go, just not that much.  Maybe it's like the fear of driving, like Beulah described,  because there are times I go out and I feel so bad I have to come limping home (Nova).  (like my citations? )

anyway, it feels like healing, although it's def impacting the very simple life and routine I had eked out.  The healing is I'm sleeping deeply, soundly, and dreaming. I wake up refreshed.  this is huge, I can't ignore this.  (but during late night and early a.m. hours I'm still getting uncomfortable akathisia and revving from cortisol)  then it stops and I'm able to sleep, 8 a.m. And the downside is, this is like working nights, I couldn't show up for anything before 3 p.m. without destroying my day, and I'm not willing to do that

so my story is I work nights, can't do anything early in the day, and I'm settling down to wait this out.

 

I'm so pissed off at big pharma that I'm going to heal so I can be an activist with Korbe, writing letters.  I really want to set cars on fire,  but I think I'm too old for that, lol

 

Have a better day, everyone.  I really need to try to get out today.

 

I use to have this a lot in tolerance.

 

Then I read something about our senses being hypervigilant at night, out of fear of the unknown and relaxing during the day, because we tend to feel more secure and protected, what with more background noises and all.

 

I would fall asleep at dawn, when everybody was waking up, the noises sort of lulled me to sleep.

 

WHere am I  going with this ?

 

I don't know, it's just like this thread is abot assembling pieces from a puzzle, wd.

 

Each buddy brings in a piece, we don't know if and how they are connected, we just bring them to the table and slowly are making sense of all this that we are living.

 

Not making too much sense today, I am in a bad wave.

 

Imagine, yesterday I even thought, in a moment of madness clearly, I thought I was almost healed !

 

Anyway, the brain of course was the first to go and I don't know if I am thinking straight, sure does not feel like it ! 

 

Btw, what is Coop up to ? Is she ok ?

[[dr...]]

meditation helped me have a brief respite.  while getting changed at the gym my leg felt heavy...this is an old symptom returning and I don't know why it gets my fear up each time.  It NEVER stopped working once before. Doing my CBT worksheet and boy is my health anxiety off the charts.  Every feeling I get in my body equals imminent death.  This too shall pass.

[[Gr...]]

Green-when does it get easier?

 

My whole morning was and still is chemical anxiety.  Crawling out of my skin and my brain is weird.  These are the days where I retreat home and pull the covers over my head.  Nothing seems to help or change it.  For some reason it always seems to start letting up in early afternoon and I hope today is no different.

 

I decided no retreat yet and am at the gym and will meditate for a bit.  I've had lots of thoughts that this is the real me now(the voice is strong)but then I get hissing in my ear and I've never had that before tapering.  I did take 5mg of propronolol as the racing heart is an added bonus I can do without. 

 

Take care all.

 

Drew, it def gets easier and it's def not you.  I'm back to hearing water running, I guess that's a variation on hissing, and I never had it either. 

 

It gets better, it gets easier, and remember, intense symptoms always, I can say always, result in healing, a window, and better function.  wait for it. 

there must be a lot of healing in the second year, much more than we would think.  If you weren't getting these symptoms, you wouldn't be healing.  I believe that with all my heart now.

I disagree with baylissa on the exercise.  I think if you can tolerate it, do it.  just listen to your body. I think it's extremely important to hang onto as much of our lives as possible.  you will instinctively know if it's hurting you.  hang in there.  these are tough months.  you are going to be getting some breaks.

[[Gr...]]

Drew, I'm asking the same questions. All the fears, worries that this will never get better. This is normally my better part of the day (evening), the head pressure is on full throttle and lots of other symptoms. I'm 16 months tomorrow and cant believe this even with all the reassurance. Feel brain dead.

 

Remember, Drew and Marj, that months 16, 17 are taking you straight into 18, where you're going to start to see major improvements, where healing is really going to accelerate.  Everybody says that, all the ppl who healed, me, Coop, Jenny.  So hang on, wait for it. Hope you guys get some better days soon.

[[Gr...]]

Hello, buddies.

 

Beulah, you sound so good.  Your good days and bad days are night and day.  I can actually hear them.  And Nova, they're getting very stingy with the good days!

 

I read everybody's stuff.  I'm going to make a quick post and try to get out for a walk, which has not been happening for some reason, in spite of my best intentions.  this is def a game change from whatever I was dealing with before.  As always, it feels like 1 step fwd and 2 back, they say waves and windows; it always feels like chutes and ladders to me. (FJ)

 

My insomnia has cemented into a new sleeping pattern, operative word is sleep, I am sleeping, and I wasn't before.  I think Korbe and I are on the same page with this. Sleep is def not happening until morning has started. that's 8 o'clock a.m. today, until 2 p.m.  and now I'm not so physically fatigued as I am reluctant to "go out there."  it's such a strong aversion to going out, I'd say it was agoraphobia back for a visit, but it's not fear based, because when I have to go, I can go, just not that much.  Maybe it's like the fear of driving, like Beulah described,  because there are times I go out and I feel so bad I have to come limping home (Nova).  (like my citations? )

anyway, it feels like healing, although it's def impacting the very simple life and routine I had eked out.  The healing is I'm sleeping deeply, soundly, and dreaming. I wake up refreshed.  this is huge, I can't ignore this.  (but during late night and early a.m. hours I'm still getting uncomfortable akathisia and revving from cortisol)  then it stops and I'm able to sleep, 8 a.m. And the downside is, this is like working nights, I couldn't show up for anything before 3 p.m. without destroying my day, and I'm not willing to do that

so my story is I work nights, can't do anything early in the day, and I'm settling down to wait this out.

 

I'm so pissed off at big pharma that I'm going to heal so I can be an activist with Korbe, writing letters.  I really want to set cars on fire,  but I think I'm too old for that, lol

 

Have a better day, everyone.  I really need to try to get out today.

 

I use to have this a lot in tolerance.

 

Then I read something about our senses being hypervigilant at night, out of fear of the unknown and relaxing during the day, because we tend to feel more secure and protected, what with more background noises and all.

 

I would fall asleep at dawn, when everybody was waking up, the noises sort of lulled me to sleep.

 

WHere am I  going with this ?

 

I don't know, it's just like this thread is abot assembling pieces from a puzzle, wd.

 

Each buddy brings in a piece, we don't know if and how they are connected, we just bring them to the table and slowly are making sense of all this that we are living.

 

Not making too much sense today, I am in a bad wave.

 

Imagine, yesterday I even thought, in a moment of madness clearly, I thought I was almost healed !

 

Anyway, the brain of course was the first to go and I don't know if I am thinking straight, sure does not feel like it ! 

 

Btw, what is Coop up to ? Is she ok ?

 

Sky, if Coop isn't here, she's having some good days, I think.  The fact you even considered you might be healed is I think very good news, indeed.  You have not had many good days, really no days without symptoms. 

 

The sleep thing, the fact I'm sleeping so well and soundly when I do fall asleep, that's real healing for me.  My sleep has been light, hover sleep, peppered with wakeups all night -- this is the closest thing to real sleep since this mess started. so I'm not going to fight it, I'm going to try to be patient and see where it goes.

 

I think I'm starting to feel a little pressure as the end of the second year approaches.  where are you on that?

[[...]]

Drew, I'm asking the same questions. All the fears, worries that this will never get better. This is normally my better part of the day (evening), the head pressure is on full throttle and lots of other symptoms. I'm 16 months tomorrow and cant believe this even with all the reassurance. Feel brain dead.

 

Remember, Drew and Marj, that months 16, 17 are taking you straight into 18, where you're going to start to see major improvements, where healing is really going to accelerate.  Everybody says that, all the ppl who healed, me, Coop, Jenny.  So hang on, wait for it. Hope you guys get some better days soon.

 

Thanks so much Green, Got home from work and done absolutely nothing. I'm usually better if I push myself a little, just couldn't. Distracted by trawling ebay. Think I'm going to write this one off and go to bed. Hope you have a good day and thanks again for your comfort 

[[Sk...]]

Hello, buddies.

 

Beulah, you sound so good.  Your good days and bad days are night and day.  I can actually hear them.  And Nova, they're getting very stingy with the good days!

 

I read everybody's stuff.  I'm going to make a quick post and try to get out for a walk, which has not been happening for some reason, in spite of my best intentions.  this is def a game change from whatever I was dealing with before.  As always, it feels like 1 step fwd and 2 back, they say waves and windows; it always feels like chutes and ladders to me. (FJ)

 

My insomnia has cemented into a new sleeping pattern, operative word is sleep, I am sleeping, and I wasn't before.  I think Korbe and I are on the same page with this. Sleep is def not happening until morning has started. that's 8 o'clock a.m. today, until 2 p.m.  and now I'm not so physically fatigued as I am reluctant to "go out there."  it's such a strong aversion to going out, I'd say it was agoraphobia back for a visit, but it's not fear based, because when I have to go, I can go, just not that much.  Maybe it's like the fear of driving, like Beulah described,  because there are times I go out and I feel so bad I have to come limping home (Nova).  (like my citations? )

anyway, it feels like healing, although it's def impacting the very simple life and routine I had eked out.  The healing is I'm sleeping deeply, soundly, and dreaming. I wake up refreshed.  this is huge, I can't ignore this.  (but during late night and early a.m. hours I'm still getting uncomfortable akathisia and revving from cortisol)  then it stops and I'm able to sleep, 8 a.m. And the downside is, this is like working nights, I couldn't show up for anything before 3 p.m. without destroying my day, and I'm not willing to do that

so my story is I work nights, can't do anything early in the day, and I'm settling down to wait this out.

 

I'm so pissed off at big pharma that I'm going to heal so I can be an activist with Korbe, writing letters.  I really want to set cars on fire,  but I think I'm too old for that, lol

 

Have a better day, everyone.  I really need to try to get out today.

 

I use to have this a lot in tolerance.

 

Then I read something about our senses being hypervigilant at night, out of fear of the unknown and relaxing during the day, because we tend to feel more secure and protected, what with more background noises and all.

 

I would fall asleep at dawn, when everybody was waking up, the noises sort of lulled me to sleep.

 

WHere am I  going with this ?

 

I don't know, it's just like this thread is abot assembling pieces from a puzzle, wd.

 

Each buddy brings in a piece, we don't know if and how they are connected, we just bring them to the table and slowly are making sense of all this that we are living.

 

Not making too much sense today, I am in a bad wave.

 

Imagine, yesterday I even thought, in a moment of madness clearly, I thought I was almost healed !

 

Anyway, the brain of course was the first to go and I don't know if I am thinking straight, sure does not feel like it ! 

 

Btw, what is Coop up to ? Is she ok ?

 

Sky, if Coop isn't here, she's having some good days, I think.  The fact you even considered you might be healed is I think very good news, indeed.  You have not had many good days, really no days without symptoms. 

 

The sleep thing, the fact I'm sleeping so well and soundly when I do fall asleep, that's real healing for me.  My sleep has been light, hover sleep, peppered with wakeups all night -- this is the closest thing to real sleep since this mess started. so I'm not going to fight it, I'm going to try to be patient and see where it goes.

 

I think I'm starting to feel a little pressure as the end of the second year approaches.  where are you on that?

 

I wouldn't know about that.

 

THe anxiety I had in the last two days, the ones in which I thought I had almost healed, was unlike anything I have had before. And then the hyperventilation was awful.

 

Sue, I was just having wishful thinking, thinking this  is as good as it gets.

 

THis is not as good as it gets, it is just a lot of improvement compared to Easter, when I was last  here.

 

But today has been unreal, so bad I can hardly believe it.

 

Sorry to hear everybody is feeling so bad today.

 

I hope you all get better days, and in the meantime keep on healing.

[[dr...]]

Yes green..thanks...I just arrived home and my headache is coming on. Fits the pattern on those really bad chemical anxiety days. Tomorrow will be cog fog with very little anxiety if this stays true. 

 

Marj...my sister in suffering...be well. 

 

 

I'm just amazed and not in a good way how long this process takes.  Day in and day out I just feel like crap. I know many of you are in the same boat. We are incredible people to do this every day. Healing does seem a fantasy right now but I have to believe everyone ahead of me. I babble...

[[Gr...]]

Hello, buddies.

 

Beulah, you sound so good.  Your good days and bad days are night and day.  I can actually hear them.  And Nova, they're getting very stingy with the good days!

 

I read everybody's stuff.  I'm going to make a quick post and try to get out for a walk, which has not been happening for some reason, in spite of my best intentions.  this is def a game change from whatever I was dealing with before.  As always, it feels like 1 step fwd and 2 back, they say waves and windows; it always feels like chutes and ladders to me. (FJ)

 

My insomnia has cemented into a new sleeping pattern, operative word is sleep, I am sleeping, and I wasn't before.  I think Korbe and I are on the same page with this. Sleep is def not happening until morning has started. that's 8 o'clock a.m. today, until 2 p.m.  and now I'm not so physically fatigued as I am reluctant to "go out there."  it's such a strong aversion to going out, I'd say it was agoraphobia back for a visit, but it's not fear based, because when I have to go, I can go, just not that much.  Maybe it's like the fear of driving, like Beulah described,  because there are times I go out and I feel so bad I have to come limping home (Nova).  (like my citations? )

anyway, it feels like healing, although it's def impacting the very simple life and routine I had eked out.  The healing is I'm sleeping deeply, soundly, and dreaming. I wake up refreshed.  this is huge, I can't ignore this.  (but during late night and early a.m. hours I'm still getting uncomfortable akathisia and revving from cortisol)  then it stops and I'm able to sleep, 8 a.m. And the downside is, this is like working nights, I couldn't show up for anything before 3 p.m. without destroying my day, and I'm not willing to do that

so my story is I work nights, can't do anything early in the day, and I'm settling down to wait this out.

 

I'm so pissed off at big pharma that I'm going to heal so I can be an activist with Korbe, writing letters.  I really want to set cars on fire,  but I think I'm too old for that, lol

 

Have a better day, everyone.  I really need to try to get out today.

 

I use to have this a lot in tolerance.

 

Then I read something about our senses being hypervigilant at night, out of fear of the unknown and relaxing during the day, because we tend to feel more secure and protected, what with more background noises and all.

 

I would fall asleep at dawn, when everybody was waking up, the noises sort of lulled me to sleep.

 

WHere am I  going with this ?

 

I don't know, it's just like this thread is abot assembling pieces from a puzzle, wd.

 

Each buddy brings in a piece, we don't know if and how they are connected, we just bring them to the table and slowly are making sense of all this that we are living.

 

Not making too much sense today, I am in a bad wave.

 

Imagine, yesterday I even thought, in a moment of madness clearly, I thought I was almost healed !

 

Anyway, the brain of course was the first to go and I don't know if I am thinking straight, sure does not feel like it ! 

 

Btw, what is Coop up to ? Is she ok ?

 

Sky, if Coop isn't here, she's having some good days, I think.  The fact you even considered you might be healed is I think very good news, indeed.  You have not had many good days, really no days without symptoms. 

 

The sleep thing, the fact I'm sleeping so well and soundly when I do fall asleep, that's real healing for me.  My sleep has been light, hover sleep, peppered with wakeups all night -- this is the closest thing to real sleep since this mess started. so I'm not going to fight it, I'm going to try to be patient and see where it goes.

 

I think I'm starting to feel a little pressure as the end of the second year approaches.  where are you on that?

 

I wouldn't know about that.

 

THe anxiety I had in the last two days, the ones in which I thought I had almost healed, was unlike anything I have had before. And then the hyperventilation was awful.

 

Sue, I was just having wishful thinking, thinking this  is as good as it gets.

 

THis is not as good as it gets, it is just a lot of improvement compared to Easter, when I was last  here.

 

But today has been unreal, so bad I can hardly believe it.

 

Sorry to hear everybody is feeling so bad today.

 

I hope you all get better days, and in the meantime keep on healing.

 

Sky, yes, some pretty tough days, but bad in a different way than the old waves, I think.  Actually, it's so bad I think something is happening, healing, I think.  I will PM you.

[[No...]]

Good Evening, or Morning, or Afternoon, wherever we are ...

 

I chose to shut down very early last night ... very tired after several days of un-restfull sleep ... five solid hours of sleep ...

 

Meandering back to some things from a while ago ... especially how I (and perhaps some of you) struggle each day to make some sense out of my experience of this process ... and how this struggle to make sense keeps shape-shafting almost daily ... that even the "frame of meaning" I try to place over my experience constantly jiggles and bounces about ...

 

How I struggle each day with my efforts to find pattern and meaning within this process ... and try to put word to this effort ... to find my place in the story ... some stable ground to stand on ...

 

And I often return to the images of the "labyrinth" and the "maze" ... and my need to daily renew my trust in the process ...

 

The healing labyrinth that I have entered ... that meanders and curves round and round ... that does have a beginning and a resolution in the fullness of time ... or the maze that seemingly goes no where, with no vistas ... no hope ... and my constant need to trust that I am in this labyrinth and not a maze ...

 

And whether we can feel it or not in this moment, we are held in this healing labyrinth ... being sustained and cared for while we move towards our resolution ... whether we are moving along the path, or resting on one of the benches along the way, we are safe and cared for ... Time, compassion and this community of pilgrims affirms for us that we are not lost ... this journey of healing is not endless ...

 

Be Well ...

 

 

 

 

 

 

 

 

[[No...]]

Hi Drew and Green ... I see your lights on ... hope things are quiet for you both ...

 

Meandering through the wee hours here after some good sleep ... 

[[dr...]]

I was just reading before bed.  My day was a doozy but it's in the books now sir.  Glad you got some good rest as I hope to follow your example.  Nite

[[No...]]

Now, Good Morning ...

 

Got some more sleep ... meandering is tiring work ...

 

Off to the hospital for half a day ... my wife is having the cataract thingie done on one eye this morning/noon ...

 

Yesterday is indeed in the books ... today is here ... hope we all enjoy is some ... 

[[be...]]

Now, Good Morning ...

 

Got some more sleep ... meandering is tiring work ...

 

Off to the hospital for half a day ... my wife is having the cataract thingie done on one eye this morning/noon ...

 

Yesterday is indeed in the books ... today is here ... hope we all enjoy is some ... 

 

Morning Nova,

 

You will be wife sitting today, hope everything goes smoothly.

 

Yes, yesterday is gone and another day of healing under our belts. Have the best day you can.

[[Co...]]

Nova, sorry your wife has to have surgery..  I will be thinking of you today....thank you for the thoughts on labyrinth...comforting..  coop

[[Co...]]

Good morning 12-18 ( and beyond) buddies....I have been off again for a bit and have not read back on the pages yet this morning....I wish I could say that I have been off because an Effortless Mind window has swept me away into the land of happy normal living ... . frustratingly.. .that is not the case. I have been in a wave and not wanting to add misery and discouragement to the communal healing. ...But here I am this morning with wavy updates because it really does help to bring it to the thread, whine and complain , touch base with friends and then try to let it go and accept and surrender to the process.  My belly pain continues ..  and my scans are a week out. In spite of going on the low otc prilosec things continue to not really improve consistently. Seems to have almost an every other day pattern. Yesterday was painful. Eating is a blind risk, even mashed potatoes can hurt.. hot packs to my upper belly and lavender Epsome salts hot baths help tempirarily. My sleep is iffy, though not as bad as some others. I am generally asleep by 11, but awake for the day by 4/430. I had a nice little nap yesterday that ended in a toxic wakeup, that crazy few moments of disorientation and fear....and a terrible upper belly cramp that had me in intense pain ( for only a minute) ... .and of course....gripping health fear..  blah blah blah.  The belly stuff has been going on since mid May , still without relief or a clear diagnosis.  I am just worn down and discouraged. I am trying to remember that I have had some days in that 3 month block that were Effortless Mind days and some very good normal days as well. I got through my daughter's wedding in probably the best 2 days of my entire w/d..  what an alignment with the moin, stars and sun that was..  I am so thankful still for that every day.  ....I am having a bout of intrusive looping thoughts,of death/dying.. .much like I had in acute, not constant but they drag on me..  I know that they are simply w/d and they will pass. I know the belly stuff will probably show nothing serious on the scans and will eventually get better or a correct treatment will emerge... but I am not living in that 'knowing', I am being pulled into the undertow of fear and discouragement..  trying to just go with it as my zen is missing and can not be found anywhere..  This is why I have been off..  what a lot of cry cry cry .  Hate to add misery to the communal narrative. .  I will come back this afternoon with hopefully with a better take and encouragement.  Onward..  going to try to go out at least for a little while this afternoon with my daughter after she is done at classes and work.  I feel better if I am at least up and puttering around . ...

.....I am thinking of every one on this thread and truly wishing everyone some relief, encouragement, sunbreaks and healing.  .......... coop

[[Co...]]

Brulah, so glad to see you here this morning. How are you ? .. O hope you are feeling the healing again. Is the Tropical Healing Abbey accepting residents today?  I would like to sign in for the day?.  Did the rain and wind stop?... Did your hubby come back home ( lol).....Beulah , you are such a dear person .... I am wishing you big sunbreaks and kitchen and garden happiness today....coop

[[Co...]]

I was just reading before bed.  My day was a doozy but it's in the books now sir.  Glad you got some good rest as I hope to follow your example.  Nite

 

......Drew,,sorry your day was a 'doozy'....You have truly had some rough going for the past month. Jenny, Green and myself had a few months of solid tough days between months 17-,20, 21..  and then experienced a solid sense of healing even with sx. All of us report a lessening in the intensity of sx and a falling away of some sx leaving just a few stubborn lingering sx.....Keep your eye on month 18/19.  That seems to be a real turning point.  I hope you have an much better day today.  You so deserve it.  .coop

[[be...]]

Brulah, so glad to see you here this morning. How are you ? .. O hope you are feeling the healing again. Is the Tropical Healing Abbey accepting residents today?  I would like to sign in for the day?.  Did the rain and wind stop?... Did your hubby come back home ( lol).....Beulah , you are such a dear person .... I am wishing you big sunbreaks and kitchen and garden happiness today....coop

 

Coop, so sorry to see of the big pot of soup you're in. Yes, the Abbey is open and I will be sending for you asap..be ready for some lavender tea and some chit chat.

 

Unfortunately I'm still in the wave but the acuteness of it is gone. Been a while since I've had a week long wave.Yes, my husband is home and says he will never leave me alone again because he was worried sick. My daughter said no more alone time till I heal.

I hate having to put my family through this. Sometimes I think it would be best if I just left till I'm healed..but they would worry so much. No easy answers here and I get so tired of faking it.

 

Coop, my heart is breaking for you that you can't eat and the belly pain. Are you able to drink kefir?

I drank kefir for an entire year and the belly pain eased up..but not sure if the kefir had anything to do with it..but every time I drank it my GI would calm.

I still get the gut pain here and there but nothing like it was. My upper belly is still tight..it feels like tight muscles..like I'm wearing a girdle.

 

Coop, I could sit here all day and tell you it will get better and healing is around the corner..but you've heard it all before and that's not what you need right now.

A good rant about how much we are all suffering this far out is sometimes more comforting for us.

Don't you give a second thought about coming here to reach out for compassion and understanding...we are all in this together and we know the feeling of urgency in this process.

 

I don't know what else to say other than...please know we are here for you and we love you...we understand.  Hope  your day out will bring relief and comfort. Many hugs.

[[Co...]]

Brulah, so glad to see you here this morning. How are you ? .. O hope you are feeling the healing again. Is the Tropical Healing Abbey accepting residents today?  I would like to sign in for the day?.  Did the rain and wind stop?... Did your hubby come back home ( lol).....Beulah , you are such a dear person .... I am wishing you big sunbreaks and kitchen and garden happiness today....coop

 

Coop, so sorry to see of the big pot of soup you're in. Yes, the Abbey is open and I will be sending for you asap..be ready for some lavender tea and some chit chat.

 

Unfortunately I'm still in the wave but the acuteness of it is gone. Been a while since I've had a week long wave.Yes, my husband is home and says he will never leave me alone again because he was worried sick. My daughter said no more alone time till I heal.

I hate having to put my family through this. Sometimes I think it would be best if I just left till I'm healed..but they would worry so much. No easy answers here and I get so tired of faking it.

 

Coop, my heart is breaking for you that you can't eat and the belly pain. Are you able to drink kefir?

I drank kefir for an entire year and the belly pain eased up..but not sure if the kefir had anything to do with it..but every time I drank it my GI would calm.

I still get the gut pain here and there but nothing like it was. My upper belly is still tight..it feels like tight muscles..like I'm wearing a girdle.

 

Coop, I could sit here all day and tell you it will get better and healing is around the corner..but you've heard it all before and that's not what you need right now.

A good rant about how much we are all suffering this far out is sometimes more comforting for us.

Don't you give a second thought about coming here to reach out for compassion and understanding...we are all in this together and we know the feeling of urgency in this process.

 

I don't know what else to say other than...please know we are here for you and we love you...we understand.  Hope  your day out will bring relief and comfort. Many hugs.

 

......Beulah. .  Thanks so much..  I will be right over for tea and sympathy at the Abbey..  I just love it that your family loves you so much. .  We try so hard to keep things under the radar to shield our families. .  I often feel guilty about not being 'more' of a mom and nonnie to my children and grandchildren, but when I talk to my daughter she says normally she doesn't notice my sx unless I am having a really bad day. I think we often see ourselves as much more ' burdensome' than we actually are. It just stuns me when I realize how many people and 'bystanders' this drug knocks down . There are some incredible patient spouses and family members indirectly on this thread. ...Please remind yourself that you would do exactly the same for them.....because it is so obvious to me that you would go to the ends of the earth for your family. ...I am so glad to hear that your week long wave is starting to roll out. That is hard to take this far out.  What would we ever do without you here Beulah, you are a well of encouragement and compassion ...

......I have not tried the kefir, but I am going to get some and give it a tey. Believe it or not, prune juice ( that I have been taking instead of medical remedies for slow motility and the results . ..or lack there of  of a gut that won't work), seems to soothe my belly pain....don't know why. ...The gi doctor said to start low low on the prilosec because the problem could be lack of acid instead of too much and they can cause similar sx..    I love it that he wants to get as much clinical information before he starts recommending stuff right and left....He is also r/o gallbladder ( no no no).    I will feel better to finally get the scans done and maybe get a definitive something or ....nothing...

.......Thank you for your words....yes, we hear.....and say all the supportive , encouraging compassionate words over and over....and still we can't hear them enough because in a bad wave we are absolutely unable to connect with knowing it will pass.   

  .....I so hope this is your last wave..  You more than deserve to be released from this and enjoy your loving family every day.....Sending love right back to you...  coop

[[be...]]

Coop, just to let you know..if you like vanilla, not all stores have it ..but the vanilla kefir is my fave.

It's so hard to reach a happy balance in out bellies..to much acid..not enough...when we have so much going on with other symptoms also.

I also had to go the prune juice route for a while..now it goes the other way...sometimes back and fourth.

 

I know you'll be bringing your dog with you to the Abbey, so I'm putting down extra blankets because it's raining, he will might also want some good doggie snacks. I will run to the store and set out a smorgasbord for us all, surely their will be something we can eat without tummy trouble.

 

See you in a bit..oh..might wanna check if others wanna come along...got plenty of blankets and tea.

 

[[dr...]]

Coop-I used to drink the goat milk kefir and had no issues at all.  Not sure if they have it up by you but you are in a earthy crunchy/granola state like me.

[[Fi...]]

Let me put my vote in for kefir.  My stomach feels fine.  I only started drinking it when I saw somebody else on BB recommend it.  I guess everyone's different, though.  I got my mom to try it and she said it gave her such outrageous gas she won't be drinking it anymore!

[[dr...]]

i think I can be my own worst enemy according to my therapist.  Me too on that opinion.  I have a scrip for 40mg a day of propranolol to prevent the migraines and I am afraid to take it after my benzo disaster.  It can also help with the anxiety with my meetings.  I am afraid of bad side effects and I am afraid of using it as a crutch. 

Maybe my line of thinking should be that I can take it for a while to just break the cycle of migraines and taper off.  I don't know.  I jsut took a 10mg pill and I am nervous as hell. 

 

Thoughts my friends?  FG, I know you took it.  I jsut find these headaches debilitaitng but meds scare the hell out of me.       

[[Fi...]]

Drew-  I'm assuming you mean me, FJ, when you say FG?  Yeah, I took propranolol for 25 years as a migraine preventative and it really changed my life.  Ha ha, our joke was that it improved my personality because I wasn't so uptight.  My migraines came on with relief after a stressful situation, so the idea was to keep from getting so whipped up in the first place.  I was used to getting up in front of people doing theatre and giving book talks, so never had incapacitating stage fright, but while on prop. I was fully aware of the calming benefit I was getting.  When I started taking it my kids were little and about every two weeks I would lose four days in a row to intense suffering from a migraine.  I hated having to make my husband pick up all the pieces while I just stayed in a dark room in PAIN for days on end.  The propranolol helped immensely.  I felt fatigued when I started it but adjusted to that.  I think the only side effect I felt was that over the years, I felt it was harder to keep the weight off, because my heart would never go over 100 no matter how hard I exercised.

 

Then they came out with Imitrex which worked when I'd get a headache better than the old stuff.  So I went along like that for years.  Imitrex was stupidly expensive, but it worked.  Flash ahead to my whole crisis following surgery.  I wanted off the propranolol because I wanted to get thinner, not fatter.  A gym buddy--not my high priced neurologist--had suggested magnesium and boy, that stuff works for me.  As soon as I started taking it I cut my Imitrex doses to a third of what I'd been taking.  I figured that with my life calmer, no little kids underfoot etc., maybe I could see a way to go off the propranolol.  Twice previously I'd tried to go off but didn't understand that one week did not constitute a proper taper.  I felt like I was on speed.  Just couldn't hack it.  This time I took longer to go off.

 

I'm amazed that now I feel so calm even though I'm not on the stuff.  Maybe the magnesium is really helping?  Anyway, I wanted to be on as little as possible and have a shot at getting to my proper weight.

 

All that said, I would not, in your case, FEAR propranolol.  If it helped keep you steady while you suffer through the effects with benzo withdrawal, it might be truly helpful.  I remember my doc remarking, when I said I wanted off of it, that it was actually something prescribed to HELP with withdrawal.  I'm glad to be off of everything now, but looking back, I wonder if I'd have done better if I'd stayed on it until I was completely through with the effects of both the opioids and the benzos. 

 

I did not have trouble going off of it except that looking back at my charts, I realize that my terrible sinus headache of eight months duration started when I went off and this was probably due to the combined effects of hyperalgesia from opioids and the fact that the prop. had been keeping my blood pressure in check. Blood pressure spikes were giving me a headache. 

 

So, yeah, now that you've got me thinking about this, I think I can say that maybe I was too eager to get off of everything quickly and might have had less suffering if I'd stayed on it.

 

I don't think prop. is something to fear like opioids, more benzos or even unrestricted use of over the counter drugs.  Given your posts and the horrible rollercoaster anxiety you suffer, it might be a really good choice.