12-18 month support

[[Co...]]

Ok.  The garlic ice cream was not a go..lol. ...I swear it is not at all  garlicky or overwhelming in a smoothy...but I have to say. I love garlic.  Well, maybe Nova will find a way to hide some in the pizza......coop

[[be...]]

Hey Coop, how you doing? Hope you feel some better today.

 

I'm being nagged by the beast with groin pain and the stupid fake asthma.

 

Nova is making us a yummy pizza for a card party and maybe you could bring some smoothies.

 

Sky thinks he is sneaking off to bed early.

Green, you in?

[[Co...]]

Interesting posts on foods. I was noticing dome weirdness after drinking EmergenC , but thought it was just my wild and crazy health imaginings. ...but now you have made me wonder. Everything else I eat with pretty much no effects....when I can eat.

. ...Well, we all sound like a mixed bag of sx today. I miss my old life so much...I know we all do. My belief in this certainly wanes sometimes. I am tempted to do some medical testing just for reassurance, but know it will actually agrivate my health fear. I have forgotten how to 'accept and swim with the undertow instead of against it. 

  ...You are all heroes to me. I know of no other illness that changes sx every other day, fluctuates between better and perceived impending emergency and a maybe now maybe 3 years from now end date. ...I actually had a little window yesterday, but in Feb I was having day long and a string of 5 days of windows. I don't track them.any more.  Each day is just what it is.  Beulah I am holding on to your posts ..every day....okay.. on to that pizza.....coop

[[Co...]]

Beulah...maybe I could bring some nice imported citrus beers...oh, I forgot...this is not my normal life yet...sigh ...Well, how about some Pelligrino....or some organic sodas. or a very nice jug of Chianti. ..oops, there I go again...

....Sorry you are battling groin pain. Beulah, when you did this before did you get your whole life back again? ...I admire you and Green so much for going another round with this misery.

...I had a little window yesterday. I felt like my old happy busy self again...not a health fear anywhere. Now I have a new sx of feeling like a cooked noodle when my anxiety hits...completely no stamina...then, when the anxiety lifts I get some oomph back...My ears are crackling again and my tinnitus returned.  ...Another 6 months seems undoable, but then I think of all of you marching on, and Nova carrying on and I don't want to be left behind so onward ....with pizza.  and no beer.. ..looking for my zen....coop

[[Co...]]

Nova, interesting that you mention feeling improved in the mornings for a few hours and then the yuk settles in. That's exactly how my sx have been . I get up..and get a lot done for a few hours and then the d/r, dizziness and anxiety hit. 

.....What's on the list for pizza toppings ..shrimp? ...sun dried tomatoes?...garlic?...lol.....carry on Nova.  ...coop

[[Co...]]

Sky...I will save you some party favors...You give me so much courage...you are so steadfast in kepping on keeping on in the face of the same sx over and over.. I am hoping tomorrow is one of your no vibrations day...Sleep well buddie Sky...coop

[[be...]]

Yes yes and yes..coop..I got my whole life back. I went back to work and everything. I really got it all back. I keep thinking of how much better I was then compared to now....I have to stop doing that.

I had so many good waves in my second year off and it just got better and better.

I didn't have much physical pain in my first..but the panic attacks and heart symptoms were over the top.

I pretty much lived in the ER in my first ....swearing I was going to die if they didn't calm my heart.

A couple of times they admitted me because I kept passing out...my blood pressure was all over the map. My first withdrawal was fast and hard...this one is slow and harder.

 

We will all heal...try not to worry about that. It's the hanging on day after day waiting for the healing.

coop, their is not a doubt in my mind about the healing...just about how long it will take.

[[be...]]

Green- I was just looking at your sig line because coop said this is your second time around..but I didn't see it in your sig.....may be my benzo brain...I don't know.

[[Ha...]]

Coop and all,

 

Anyone get a vibrating head when u lay down?? That's also a nighy thing for me then heart palps if I eat after 6... its been worse in month 16. Miserable. I do and have had good weeks.

 

Happy

[[be...]]

Hey Happy, my head vibrated along with my legs every night in bed for about a year..and then it just stopped...never had it again.

[[Mi...]]

I really wish we all lived in the same town.  I think it would be fascinating to meet all of you folks in one room at the same time.  The comfort we would all feel would be through the roof.  100% complete acceptance.  Nobody would judge, nobody would worry about being judged, and nobody would have to "act" to get through our interactions comfortably.  In a sense there would be a social freedom that I'm sure none of us have felt during this process.  I haven't had the privilege of speaking to anyone in person who is in the same state as myself/us.  I think for me, that has made this journey so much more difficult.  Feeling alone, misunderstood, and embarrassed to repeat to "normal" people, that you don't feel well (again) has tried to crush my confidence and spirit so many times.  So yeah, just something that crossed my mind today.  Wish you were all in my livingroom for a day!

 

I'm sorry a lot of you are still having problems with certain foods or medicines.  I can eat whatever I want including some sugar and 1 cup of coffee.  I do however run into problems when I eat big meals.  That revs me up.  Also I have been getting benzo belly again lately.  Feeling really full and tight in my abdomen even before I've had any food that day. 

 

Regarding medicines I did something really stupid last week.  Methylprednisone!!!!  I had a bad reaction to steroids a few years ago but for some reason I decided to take a course of them for the torn tendon in my elbow last week.  I took them throughout the day without a problem, then at night I took the final two pills of that day and freaked out about 20 minutes later as I was trying to sleep.  I didn't sleep one minute that night, panic attack from 11pm until 5am, felt like a couldn't breathe, skin was itching all over, caffeinated brain, completely amped up and scared.  No more oral steroids for me!

 

Dr. Google is indeed awful.  I fell into that trap so many times in the past.  I try not to ever look up health questions if possible.  Look at it this way. I'm not going to take the time and create a profile on a sinus site (for example) and brag about how well my septum surgery went, would be pointless.  However, if I had a problem with that same surgery and wanted to find others who had problems as well, bang, I could find those people quickly.  What that leaves us with when we search online, is a bunch of horror stories from the tiny group of people that had a bad experience.  The minority all of a sudden seems like the majority, then our brains get tricked by the power of suggestion that something else is wrong with us.  That's my take on the nefarious Dr. Google.

 

I don't know where I'm going with this post, I have been going through a rough period of waves, 10 days of bronchitis, (now strep throat) since Easter, in a major mental slump just trying to ride out this month 19 bullsheet.  Praying for healing, praying for a couple days of 80% just to regain some sanity.  It's school vacation week and all I've been feeling is head pressure, sickness, and fatigue.  No matter what I'm going to take little Mike to see that new Monkey Kingdom movie tomorrow.  Disney nature movies are always great. 

[[Co...]]

Mike,...what a sweet dad you are...taking your little guy to a movie even though you are miserable...Truly beautiful people in this group. We have all wished for the same healing commune that you are wishing for...we are all wishing for it too. Beulah envisions an Island Healing Commune. ...Me too.  a place to ' just be..and heal'...to support and receive support. No ' therapeutic group fascilitator'.  Just us accepting and trusting one another. No "daily schedule of therapies".  Just trusting our own process. Having tea in the middle of the night with whoever else shows up in the kitchen at 3am, watching a movie keeping up social banter...because we understand the need for silence or the need to save ourselves from anxiety triggered by merely speaking...A chef who cooks healthy wonderful food for all of us without questioning why we can't eat yogurt or bananas.  Well.. on and on. Where can I sign up.

  ..My heart is with you . I can hear the soul deep weariness in your post. Me too.. month 17, 18, 19....it just seems too long. I envision Washinton's troops trudging through snow without boots....only rags wrapped around thier feet.  Well, there yo go...an uplifting rah rah rah...lol

  ....If it's any consolation, my head pressure, d/r, anxiety and stamina is all worse starting with the third week of March. ..

  ..This is truly a time of one day at a time...time. ..I do believe it will get better again...love to you Mike...we are right there with you. Everyone here understands exactly what you are enduring.  coop

[[Co...]]

*watching a movie NOT keeping up social banter*

[[dr...]]

Look at it this way. I'm not going to take the time and create a profile on a sinus site (for example) and brag about how well my septum surgery went, would be pointless.  However, if I had a problem with that same surgery and wanted to find others who had problems as well, bang, I could find those people quickly.  What that leaves us with when we search online, is a bunch of horror stories from the tiny group of people that had a bad experience.  The minority all of a sudden seems like the majority, then our brains get tricked by the power of suggestion that something else is wrong with us.  That's my take on the nefarious Dr. Google.

 

 

Mike-what you wrote above us what any outsider thinks of this site

[[Gr...]]

Green ... believe it or not, bananas are on my no fly list lately ... I mean, how in hell can a banana rev you up? ... and they do ... seems I cannot eat any "raw" fruit ... been that way for a while ... and the same with veggies, nothing raw except tomatoes and cucumbers ...

 

Whoever wrote this script must be on something ... 

 

No big walks today ... I am so sweet I might melt out there ... 

 

Some people swear by the raw food diet.  this is so individual, even down to the food.  I guess we really learned how to listen to our bodies

[[Gr...]]

Hey Coop, how you doing? Hope you feel some better today.

 

I'm being nagged by the beast with groin pain and the stupid fake asthma.

 

Nova is making us a yummy pizza for a card party and maybe you could bring some smoothies.

 

Sky thinks he is sneaking off to bed early.

Green, you in?

 

I'm in!

 

Groin pain?  does anyone get pain where the ovaries or Fall. tubes should be?  both sides.  feels like there's cysts, even though I'm past that?

[[Gr...]]

Green- I was just looking at your sig line because coop said this is your second time around..but I didn't see it in your sig.....may be my benzo brain...I don't know.

 

It's not in my signature line.  Yes, I did try getting off, back in 2009.  I was benzo clueless, I had no idea.  I gave up at about nine months, went back on them.  That time was very hard, I thought then, but child's play compared to this time. 

 

This time I retired, threw my pills away, and did my own fast taper.  I had no clue, no understanding of what was happening.  I thought if I didn't have to go to work it should be okay, and I figured the worst would be over in 21 days.  like what the doctors tell us, lol.  I believed that.  Looking back, with the clarity I have now, I should have been in a hospital.  But my thinking was too impaired to make rational decisions.  and I knew, somehow, that in the condition I was in I would be poly drugged, possibly a psych ward.  I was afraid I was crazy, I was afraid to go to an ER. so I just stuck it out waiting for it to get better.  and of course it seemed, unbelievably to be getting worse.  I jumped Nov. 15.  I think I was online searching by Christmas, when there was no improvement.  I remember you from the early days.

[[Gr...]]

I really wish we all lived in the same town.  I think it would be fascinating to meet all of you folks in one room at the same time.  The comfort we would all feel would be through the roof.  100% complete acceptance.  Nobody would judge, nobody would worry about being judged, and nobody would have to "act" to get through our interactions comfortably.  In a sense there would be a social freedom that I'm sure none of us have felt during this process.  I haven't had the privilege of speaking to anyone in person who is in the same state as myself/us.  I think for me, that has made this journey so much more difficult.  Feeling alone, misunderstood, and embarrassed to repeat to "normal" people, that you don't feel well (again) has tried to crush my confidence and spirit so many times.  So yeah, just something that crossed my mind today.  Wish you were all in my livingroom for a day!

 

I'm sorry a lot of you are still having problems with certain foods or medicines.  I can eat whatever I want including some sugar and 1 cup of coffee.  I do however run into problems when I eat big meals.  That revs me up.  Also I have been getting benzo belly again lately.  Feeling really full and tight in my abdomen even before I've had any food that day. 

 

Regarding medicines I did something really stupid last week.  Methylprednisone!!!!  I had a bad reaction to steroids a few years ago but for some reason I decided to take a course of them for the torn tendon in my elbow last week.  I took them throughout the day without a problem, then at night I took the final two pills of that day and freaked out about 20 minutes later as I was trying to sleep.  I didn't sleep one minute that night, panic attack from 11pm until 5am, felt like a couldn't breathe, skin was itching all over, caffeinated brain, completely amped up and scared.  No more oral steroids for me!

 

Dr. Google is indeed awful.  I fell into that trap so many times in the past.  I try not to ever look up health questions if possible.  Look at it this way. I'm not going to take the time and create a profile on a sinus site (for example) and brag about how well my septum surgery went, would be pointless.  However, if I had a problem with that same surgery and wanted to find others who had problems as well, bang, I could find those people quickly.  What that leaves us with when we search online, is a bunch of horror stories from the tiny group of people that had a bad experience.  The minority all of a sudden seems like the majority, then our brains get tricked by the power of suggestion that something else is wrong with us.  That's my take on the nefarious Dr. Google.

 

I don't know where I'm going with this post, I have been going through a rough period of waves, 10 days of bronchitis, (now strep throat) since Easter, in a major mental slump just trying to ride out this month 19 bullsheet.  Praying for healing, praying for a couple days of 80% just to regain some sanity.  It's school vacation week and all I've been feeling is head pressure, sickness, and fatigue.  No matter what I'm going to take little Mike to see that new Monkey Kingdom movie tomorrow.  Disney nature movies are always great.

 

Mike, I totally get that, wanting all of us to be in a room together.  This has been one of the loneliest journeys, I guess because no one knows, no one can understand, not even doctors, no one!  and in waves I struggle terribly with the isolation

 

Sorry to hear you're suffering.  We're all in the same wave boat, I guess.  It's been very, very hard, month 17, right into 18.  hoping you get some breaks.  Remember, Healinghope went directly from the misery of a wave into healing.  She had a bad wave, said screw it and went on a trip to NYC, and that was it, she's done.

 

Feel better.  Sounds like you have a lot going on besides the wave, the bronchitis, the elbow.  feel better.

[[Fi...]]

Green--yes, I've had that pain that feels like it's your ovary.  Had it last Friday.  I've had it a handful of other times during the course of this.  It can last a day or two, then goes away.  I just write it off to withdrawal and wait.

 

Also this morning I felt a wooziness that hasn't really been one of my symptoms, but it sounded just like what you were describing.

 

Sure hope these are tailing off symptoms.  I would not be happy to be hit with a horrible wave of fresh symptoms at 20 months, but I guess anything's possible in this stupid Shit Show.

[[No...]]

Mike ... I hear where you are ... the loneliness and isolation is a difficult part of this process ... some days it almost feels like a "punishment" for doing what I am doing ...

 

And keeping a "focus" is an almost daily struggle ... and we do this, day after day ... knowing we will get there eventually ...

 

When I reached that post-acute plateau last August and had a 10 day break or respite or window or whatever, I knew that I had "broken through" the dependence and had reached a place where I did not feel I needed the drug anymore, knew in my bones that the drug would never be a "solution" or even a "possibility" ... and now these last 8 months of "enduring" that often feels like it is endless ...

 

For those of us in this "time warp" of healing, this daily sense of meandering through this process of healing, this "dark night of healing" ... we hang onto the stories of those that have come before ... and we endure with the unconditional acceptance and reassurance of others on the same path ... and the daily kindness we show ourselves ... and others ...

 

And we goof up, we eat that banana, or use that adjunct med, or get tangled up in another medical process ... and we get angry ... and then we just let it be and smile ... 

 

We watch another bunch of shows, or go for a walk, or go to a movie or show ... we make a plan, and can sometimes see it through and sometimes not ...

 

And I remember something I used to post way back when ... we are giving ourselves a gift ... the gift to be in the world as we are ... with all our foibles and quirks and laughter ... and most of all ... feeling our ability to love and connect ... perhaps that is the thread we are following ... the need to love and be loved ... to be in the place where our days are a blessing to ourselves and those we connect with ...

 

And we are here, "practicing" ... putting in a little more time ... until we wave "bon voyage" and move on ...

 

[[No...]]

Good Morning ... had a bumpy night ... never did really settle down ... might have been the garlic ice cream ... 

 

Sitting here listening to the ear pressure shifts and the mini zaps ... and the rollicking benzo belly ...

 

With all this rain may be a good day for a morning nap ...

 

Be Well ...

[[Sk...]]

Garlic ice cream for dessert? Ha ha

 

Mr Sky was looking for an excuse to put more garlic in my food ! 

[[Sk...]]

Interesting posts on foods. I was noticing dome weirdness after drinking EmergenC , but thought it was just my wild and crazy health imaginings. ...but now you have made me wonder. Everything else I eat with pretty much no effects....when I can eat.

. ...Well, we all sound like a mixed bag of sx today. I miss my old life so much...I know we all do. My belief in this certainly wanes sometimes. I am tempted to do some medical testing just for reassurance, but know it will actually agrivate my health fear. I have forgotten how to 'accept and swim with the undertow instead of against it. 

  ...You are all heroes to me. I know of no other illness that changes sx every other day, fluctuates between better and perceived impending emergency and a maybe now maybe 3 years from now end date. ...I actually had a little window yesterday, but in Feb I was having day long and a string of 5 days of windows. I don't track them.any more.  Each day is just what it is.  Beulah I am holding on to your posts ..every day....okay.. on to that pizza.....coop

 

 

Coop, sorry you are missing your life so much.

 

I can't say I do. I don't like this one, but some days I do, but the one I had before, was spinning out of control ruled in every little thing by benzos.

 

Today is a nice day. No vibrations, just some mild anxiety. Hope it stays this way.

 

I took my brisk walk before breakfast. I love how walking in the cook morning air helps put some order in my    mind. And then, I get home, have breakfast and start on my routine of lessons, BB and Spanish.

 

Going back to catch up on  the thread, speak later. 

[[Sk...]]

Nova, interesting that you mention feeling improved in the mornings for a few hours and then the yuk settles in. That's exactly how my sx have been . I get up..and get a lot done for a few hours and then the d/r, dizziness and anxiety hit. 

.....What's on the list for pizza toppings ..shrimp? ...sun dried tomatoes?...garlic?...lol.....carry on Nova.  ...coop

 

Yes,t mornings are the best for me too . Before, it was even more so and it would be my only moment of respite, now there is more of a balance.

[[Sk...]]

Dr. Google is indeed awful.  I fell into that trap so many times in the past.  I try not to ever look up health questions if possible.  Look at it this way. I'm not going to take the time and create a profile on a sinus site (for example) and brag about how well my septum surgery went, would be pointless.  However, if I had a problem with that same surgery and wanted to find others who had problems as well, bang, I could find those people quickly.  What that leaves us with when we search online, is a bunch of horror stories from the tiny group of people that had a bad experience.  The minority all of a sudden seems like the majority, then our brains get tricked by the power of suggestion that something else is wrong with us.  That's my take on the nefarious Dr. Google.

 

Mike, I know what you mean.

 

When I used Dr Google in wd, I always put my symptom and Benzo wd in it. That was all I wanted to know, if whatever I was feeling, was in common with other people in wd. Then, I gave that up too, because the answer became obvious.

 

If something was too scary, I would get Mr Sky to do the research, so I would not get upset.

 

Consulting http://www.benzosupport.org/benzopedia.htmhelped a lot too. I must be one of the few people who got relief and comfort from Google apparently!  We are all so different !