12-18 month support

[[Si...]]

Sig, the bilateral mastectomy especially were a picnic compared to this...truly. My cancer was diagnosed at stage 0, thanks to mammography and an excellent radiologist. I chose the surgery due to family history and not wanting to go the chemotherapy route. It was an easy surgery. It is all external....no openings g up the body. .recovery was pretty eady....and when it was done.. it was done. I really don't worry about cancer recurrence. My benzo brain tortures me with sx related health fears. 

....Yes, a technology that can diagnose anything....and then treat it virtually...wouldnt that be great.

......Sig, your sleep is going to come back.. You have come so far...just keep it going....coop

 

Thank Coop, glad to hear you caught it early. My mom had stage 2 BC, but she's all clear now.

 

I slept for one hour this morning. Feel terrible of course. My wife is trying to cheer me up, but I'm having a hard time being happy. Hopefully I won't have to deal with this insomnia much longer.

[[Gr...]]

Marj...so sorry ...I know that beat down down feeling so well. Crying is a good thing...Are you raising 2 kids alone and working?....

.....I am right there with you today. I had 2 pretty good days.  and got up this morning back in benzo land. I am happy to hear that your sleep was better....We will take any i.prove mentioned that comes along. ....Marj...more better days are coming our way. We have to allow ourselves to feel what we feel , go gentle with our poor beat up spirits and keep putting one foot in front of the other. 24 months is a little ways out yet and a lot of healing can happen in the next 4-8 months...as Green reminded us from the beginning, " no one gets left behind". 

. ..Marj, I am thinking of you and hoping your day picks up for the better.  coop...

 

Hi there Coop, yes I am raising my kids by myself and they are great kids (17 and 15). Their Dad is in their lives, however I am the one that 'deals' with everything. There are plenty of others who have done it, so can I It pains me so much that I am not the lively independent Mum I have always been. I do what I can but have not cleaned my house much for ages. I know that is not really too important right now, it's just that I used to be a real multi tasker. Energy does not allow for all that at present. I'm going to potter in the garden for a bit, water plants, hang washing, stuff that doesn't take much 'doing'. then the dreaded shopping; if I go a bit later armed with a list it's quiet and it's usually a big sigh of relief when its done.

I do hope your day does get better for you, having 2 good days is such a good sign, just a big let down when awfulness returns. it's horrible what we are having to go through. We do though, even on those days when we think we can't take this anymore. Our need for survival, our spirit is stronger than this withdrawal. I have done a lot of crying recently, the tears come so easily which is a good thing.

Can't wait for the laughter to return though, so sick of feeling miserable and having to fake. Oh well, nothing can make this go away.......just time and patience (the patience runs very thin mostly) 

 

Marj, my house hasn't really been cleaned in ages either.  I mostly keep up with bath and kitchen, but that's it.  and while I was never the life of the party, sitting on my couch with the TV clicker for a good part of the day I can tell you with certainty is not me!  Don't worry, this is not you, you will get yourself and your life back.

[[...]]

JRod.  You have been through it...I never worried about heart problems....ever.. ..until w/d....to er twice in acute....absolutely sure that I was within seconds of death. ...That phone app sounds very reassuring...Being the hypochondriac that I am now, I dream of an Apple Watch that tracks everything.. then you can just go to the doctor and s/he can just read your watch.. .no mri.  no ct.  no scopes...

  ..You were really brave to have a cath. I also get yearly ultrasounds on my caratoids.. I have c. arteries that slightly loop on themselves...it's not dangerous but sometimes people who have this have a blood flow that briefly flows the wrong way in the loop....that happens to people who have a more pronounced 'loop' than I do.  .. I don't think I would ever get through a cath.. The phone app is a much better idea.

....JRod....I am so sorry that you are tortured by health fear. I think it is my worst sx..

  ...Do you have any tricks for living with health fear that you would like to pass on..  ? ....coop

 

Hey coop, back in 08 when I had the cath it was to positively determine any blockage. All the chest-pains and dizziness was due to inter dose WD and had no idea until 2013.

 

Even today when these sxs chime in,we know how convincing they can be.

Coop as far as tools for dealing with the potpourri of mainly mental sxs (the cycling anx/dep/morning dreads)  my typical day;

Walk the dog

Gym

Shower then work. (I'm in a profession where I'm not locked in an office and when not traveling I have lots of free time) but I dislike attending meetings and worry about it days before.

I fill my days with things to do no matter how horrible I feel. For me and my mental stuff, it's best not to be at home.

 

I also have a support team of very dear friends I frequently communicate with some that have been through this. Also have a great pdoc and a therapist. Pdoc actually told me me when I started seeing him over a year ago "this could take 1-2 years to settle". I didn't believe it at the time. I see him once a month and can call him any time when things get ugly. He encourages me to continue.For decades he has helped people get through this nightmare.

 

My therapist is very encouraging as well I see him twice a month and call him when I need too.

 

Recently I've been been seeing a psychologist for mindfulness but finding that difficult.

 

Coop I try and keep a circle of good people that I can talk to and alternate them as to not burn any of them out.

 

If I have idle time I  catastrophize by thinking this will never end.

 

Hang in there we never know when but it's coming.

 

 

[[Gr...]]

Good morning Nova....thank you for the lovely post. I love Mary Oliver...

...I woke up with the same thoughts...I don't want to do this anymore...I woke up to nausea, anxiety, motion sickness and the faux asthma/cough...I had 2 decent days last week and now the wave is back full throttle.

....Nova, you are right.  Going forward is the only available option...I am kind of back to one hour at a time...but that's one hour closer..

.....thinking of you Nova and wishing you a little bounce today.....coop

 

Coop, I'm with you, I had two halfway decent days earlier in the week, and now it's mostly symptom management.  I did make it to a show last night, but, folks, that's it for the day!  But I did get that intense chest pressure, where if you don't know better you're thinking heart attack?  and various other sx, I can't even keep track of them, I give up and and start ignoring them after a while, except the worst ones.

 

Have to go to a bridal shower today.  I am really dreading it terribly.  Have to go now.  Feel better, all

[[Co...]]

JRod....you just wrote the manual for how to get through this!.. What wonderful strategies and support. How fortunate for you that you have such a benzo wise pdoc...and therapist...please clone them and send them to each one of us. I love it that you "rotate" your support friends so as not to burn them out. I think that is so important....our friends and family are collateral damage in this mess. ...I try to stay very busy too, but I have some agoraphobia still so I am busy busy in my house.  Taking my dog out 3/4 times a day has been a huge source of ' getting out of my head'....I have to take him out no matter how I feel...

....Really great tips JRod....thanks...you are going to make it through this friend....keep posting to us when you feel like it...I have a feeling that we are going to be hearing  very encouraging things from you....Wishing you big windows....that go on for days....coop

[[Co...]]

Sig....so glad to hear that your mom is ok... ♡

[[No...]]

Coop ... large head pressure today ... and the throat stuff again and the cough ... not a miserable day ... just lousy ...

 

Hope things settle out for you ... 

[[Co...]]

Green, ...I think it's more important that you go do something you love than cleaning your house. When I go do something  with my daughter I feel that I have experienced something outside of w/d , even if I can't be really present for it.

....yep, "managing sx"....me too...watching Benny and Joon...one of my favorite movies...and it was filmed in my city.  about 100 years ago...I used to live in the building that he swings off window to window. 

....Yours and JRod's openess about chest tightness and the false sense of 'something is wrong' has helped me so much today with not focusing on the back, chest and neck bands.  My anxiety was about a 9 from 6am -10am. ...now it's about a 6/7..  just hanging on but the faux cough and 'can't breathe' feeling is better but the anxiety just cascades . I did have about an hour relief. Hoping for more

  ..* I didn't live in the psych hospital*...lol...those scenes were shot in 2 different buildings.  But I did a college internship in the psych hospital.  Terrible.  ...well, my little bit of trivia for the day...

....Well, onward with managing sx...in stinkin' month 18....coop

[[Co...]]

Nova, Damn!....where the heck do these old/new sx come from so far out.  So sorry you are dealing with those scary sx.. I want to be as zen as you are. You write inspiration and post beautiful poetry while suffering....I live on the edge of panic, take 2 hours to work up enough  courage to take the dog out and spend another 3 hours obssessively straightening, tidying and washing things.  I was so much better 6 weeks ago. If it wasn't for this thread and knowing that I am not the only one in this rickety old row boat. ...I am having a lot of head pressure too...and tinnitus. I never had more than a whisper of tinnitus until now....month freaking 18....Month 20 better be so much better for all of us because we have more than endured and earned it.  carry on my zen friend....I hope your day eases...coop

[[Co...]]

Nova.  How are you doing? ...just thinking of you.....I am fighting off my third anxiety attack for this day..  wondering how your cough/breathing is going?...Mine is giving g me panic.  It does get better if I am quiet and resting... going outside revs it up...or benzo is trying to convince me that going outside makes it worse.  Guess I am going to spend the rest of the day guilt on the bed...hope you are getting relief. ...I read on another thread that Altoid  peppermints will help the 'can't get a deep breath' feeling....I haven't tried it yet ...coop

[[Si...]]

Sig....so glad to hear that your mom is ok... ♡

 

Thanks! Me too! She's a great lady.

[[No...]]

Coop ... doing okay ... lousy not miserable ... that anxiety stuff sucks ... I haven't had any today, knock on wood ...

 

Watching a hockey game revved up my breathing stuff ... stress I guess ... so I tried some chamomile tea and got to finish the hockey game ... Canada won the world title this year ... 

 

Hope your evening settles down ...

 

I seem to have surfaced from that morning stuff I slipped into ... really had a hard case of "why am I doing this?" ... and the "what else can I do?" ... didn't realize how much it was weighing on me ...

 

Hope things turn around for all of us soon ... 

 

 

[[Co...]]

Hi Nova...yes, the " why am I doing this" nags on me a lot lately. After that rescue dose in my doctor's office...and how much it didn't help....and how much it revved up my sx for weeks ( still I think ), I know for me there just isn't another answer...I have thought about hydroxzine for anxiety attacks, but not there yet...

....I re-read that article again on the anxiety board regarding faux shortness of breath....esophogitis and acid reflux can cause all the sx we 'breathers' are struggling with...including cough and horseness...also anxiety and panic can cause the same....really interesting article......have a good night Nova...coop

[[No...]]

Thanks for the info Coop ... shutting down for the night ... hope you have a quiet evening ... 

[[Co...]]

Rest easy Nova....

[[Co...]]

Beulah.  You kill me.  You endured a heart cath, but can't do the mammo?....You are braver than brave to have a heart cath.  I would die right then and there. .. I am just kidding you.  believe me, I know all too well the dark night ( and morning and afternoon and evening ) of health fears...I can't go to the dentist... I keep trying to make myself go....but like you, I just cant...

.....I hope you are feeling better....coop

[[Gr...]]

Green, ...I think it's more important that you go do something you love than cleaning your house. When I go do something  with my daughter I feel that I have experienced something outside of w/d , even if I can't be really present for it.

....yep, "managing sx"....me too...watching Benny and Joon...one of my favorite movies...and it was filmed in my city.  about 100 years ago...I used to live in the building that he swings off window to window. 

....Yours and JRod's openess about chest tightness and the false sense of 'something is wrong' has helped me so much today with not focusing on the back, chest and neck bands.  My anxiety was about a 9 from 6am -10am. ...now it's about a 6/7..  just hanging on but the faux cough and 'can't breathe' feeling is better but the anxiety just cascades . I did have about an hour relief. Hoping for more

  ..* I didn't live in the psych hospital*...lol...those scenes were shot in 2 different buildings.  But I did a college internship in the psych hospital.  Terrible.  ...well, my little bit of trivia for the day...

....Well, onward with managing sx...in stinkin' month 18....coop

 

Coop, the chest tightness, and actual pressure, is ridiculous.  any normie person would run screaming to the emergency room.  We've all developed a tolerance for very, very alarming symptoms.  Last two days it's been intense.  Hoping we all get a break soon.

 

 

[[Gr...]]

Coop, Nova,

 

sorry you're both suffering today 

 

I had a bridal shower today.  I really didn't want to go, I had terrible anxiety and dread.  But it was my boys' babysitter, all grown up.  She's a lovely girl, was like a daughter to me, and my boys adored her, still do.  I had to push myself out the door, it was so early, 12:00, that was the problem, I'm so much better later in the day.  but I made it, even felt somewhat better when I got there.  I found my quiet corner and it went fine.

 

You know, Nova and Coop, I'm thinking the same thing, why am I doing this?  A simple thing like a bridal shower brunch, I'm in my 19th month, and it's a challenge?  I had to buy a wig because I had too much anxiety to get my hair done.  I know I sound like I do a lot with my shows, but there's still so much I don't do.  Getting my hair done, getting the outfit.  I had a bad week and couldn't pull myself together.  So my friend helped me buy a wig and I found an outfit in the back of my closet.  This is crazy.  Look how we're living.

 

Okay, little rant.  But I made it, it was nice, I saw people I haven't seen in a while, and I think it went well.  I know I'm much more like myself, I've had people telling me that, so I know there's a lot of healing going on, because people notice me returning to me.

 

That's good and I'm so grateful, but as Coop and I observed, it's hard to feel happy about this when I feel like crap.  Or lousy, as Nova puts it.

 

Have a good night, all.

[[...]]

Hey green

Glad you got out today. It's encouraging when people you know notice improvements and some of the old us popping up here and there.

 

Hope the dial keeps turning upward.

 

 

 

 

[[Gr...]]

Hey green

Glad you got out today. It's encouraging when people you know notice improvements and some of the old us popping up here and there.

 

Hope the dial keeps turning upward.

 

Hey, Jrod

 

Good to see you.  Yes, this is the weirdest time.  Feeling improvements and still so stuck.  I know healing is happening, it just takes so long.

 

Hope you're doing better these days.  How is the sleep going?  any improvement?

[[...]]

Hey green

Glad you got out today. It's encouraging when people you know notice improvements and some of the old us popping up here and there.

 

Hope the dial keeps turning upward.

 

Hey, Jrod

 

Good to see you.  Yes, this is the weirdest time.  Feeling improvements and still so stuck.  I know healing is happening, it just takes so long.

 

Hope you're doing better these days.  How is the sleep going?  any improvement?

 

Sleeps better average 5-6 hrs. Know the stuck feeling very well. Your one month ahead of me in this journey, although  the mental stuff is still a nightmare.

 

 

[[Co...]]

Hi Green,...Glad to hear the bridal shower went well...yep, I need a decent hair cut so badly....I have just been trimming along on it for months.  You can imagine what a great look that is...Three days ago I was feeling good enough to think about going in for a cut...and I went shopping with my daughter for some summer things...the day after ..back in acute. .Months 13/14/15 were so much better...It just knocks me back that things that I used to do without thinking are now major accpmplishments...having vented that....I am committed to month 24..5 more months for me...I am reserving all giving up u til then, but I will be doing plenty of whining, crying ,  complaining , venting and stomping around until the 2 year mark..  I am trying...really trying to go with, it is what it is u til it isnt...I found myself thinking about getting a script for vistaril for bad anxiety...but now I am rethinking that. Before ativan I never needed anything  to go to Mass...or the grocery store,or my grandsons' classrooms.. or my own kitchen first thing in the morning...I think I am trying to do this because I want to be that person again....I don't ever again want to need a drug to go to the grocery. But I was just thinking about this the other day. I have a friend who has fibro. ...and COPD...and she smokes...she is on methadone, valium and oxysomething....this girl is 65...Happy as a lark...runs all over the place doing whatever she wants...but...her judgement is whacked, she can't figure out her smart phone, her kids are scared to death to let her drive...she doesn't see any of that ...she is just as happy as can be...no anxiety..no fear.....but she isn't close to the person she used to be...and I don't think she ever will be again....well that was a long rambling thing...If I can not be that person who needs ativan to live life...I can go another 5 months...it just seems like it won't end..

.....well, here's to wigs a diy haircuts for a little longer....coop

[[Ko...]]

Hi to all my 12 18 months buddies.

Just read all your posts. Wow we are really suffering in a terrible wave that seems to not want to end.  I'm right there with you wondering what the hell, I should be better by now.

 

On my trip to Seattle for the Flumazenil treatments I learned I could fly without flipping out, so I decided to fly to Salt Lake City to visit my family. I haven't seen my dad or brothers and sisters for over 3 years. My mom came to Califirnia to see me.  The flying part was fine, even brought my little dog. But, since I arrived, I was hit with more terrible Benzi Belly pain, burning legs & sleepless nights.

My mom says to just do what I feel I can. I'm usually good for a couple of hours in the afternoon until the pain get bad. I've got 10 days and that should give me enough time to visit with everyone. Just taking it slow and easy. At least seeing my family makes me happy even though I feel like hell. It's a good distraction too.

 

Hope all of you get some happy times and some relief from this awful wave.

[[be...]]

Beulah.  You kill me.  You endured a heart cath, but can't do the mammo?....You are braver than brave to have a heart cath.  I would die right then and there. .. I am just kidding you.  believe me, I know all too well the dark night ( and morning and afternoon and evening ) of health fears...I can't go to the dentist... I keep trying to make myself go....but like you, I just cant...

.....I hope you are feeling better....coop

 

Coop, I know..it's so strange. I just knew something was wrong with my heart and I had to have the Cath. I don't fear the dentist..I had a filling last year and all went well.

I think I might have a meltdown before July because of the worry over getting my drivers license renewed...that worries me because I'm afraid I won't be able to pass the eye exam. I still have some vision problems..floaters and some small stuff.

I have no control over what I'm fearful of..but I do have control over choosing to act on the fears.

 

Some strange stuff we go through...all in a day's work of healing.

[[dr...]]

good morning all...I see a lot of suffering from glancing at the posts but please forgive me if I don't comment as I am easily affected by the suffering right now.  I will be travelling in the months most of you are getting hit and I don't want a self fulfilling prophecy.  I am doing okay....my record run of migraine free days came to a close at 33 days so that is damn good(trying to put a positive spin on it).  I felt some sinus stuff and like a head rush feeling even if I wasn't moving my head around on Thursday.  Come Saturday I woke up with sore neck, bad tummy in afternoon, and then the worst was the head  stuff.  I got hit around 7pm with intrusive dark thoughts and fear.  tried meditating but just was sweating and fearful.  I could also feel like a shift in my brain.  Luckily that period passed in an hour and I was just left with the cog fog which is very bothersome.  Didn't get the headache yet or visual aura but it is all related.  Don't know if I should call it a migraine but whatever it is it is very similar in the phases and what my body does.

 

Other than that negative, until this returned I didn't realize how clear my mind had been for the last month.    As we all know as soon as this shit hits we feel like we are stuck forever.  The main thing I am working on with my therapist is not to be worried about the future of these things.  I have no confidence to make plans and I have a three week wedding and honeymoon in December.  It's in NZ and Fiji and I am worrying about how I'll feel even though it's six months away   I did make plans to go see a baseball game tomorrow night and I am considering a business trip to Seattle next month.  Last time I went on a business trip I ended up in the ER.  This time I know I am completely healthy in heart and brain so I am considering going as sort of exposure therapy.  Oh the damage this experience does to us.

 

Hope everyone is doing okay...I am plodding along....plod...plod...plod....