12-18 month support

[[Gr...]]

You guys touch on a lot.  I have been just lurking on this post.  Mothers, well I will say a bit about mine.  She is 81.  In feb of 2014 she had a debilitating stroke.  She has been in the nursing home since then.  She is in New York state, I live in Florida.  I was well on my way of getting off psych pharmaceuticals when her stroke happened.  I went to assess the situation in March of 2014, help with her care, etc.  I went back at the end of May 2014 when she asked that both her children to be there so she could discuss "what would happen".  After this I jumped off of benzos and became pretty much non functional ~ could not go back to NY until I could handle it.  Which I finally did go back the first two weeks of August.

 

In May of 2014 I offered for her to come to Florida to live in my home and take care of her there.  She refused, does not want to live in Florida.  Several other people also urged her to go live with/near me, still refused.  This visit I did not make the offer, she is way to frail to travel down the street, much less Florida.  She has had another stroke sometime in the recent past and had a leg amputated due to poor circulation.  Her request for me now is to drop my life here in Florida, move to NY and take care of her in her house. 

 

We had a good relationship until my father died.  She remarried after that and at one point said she loved her second husband more that she loved her first husband (my father) and her children.  Wow, how do you deal with that one?

 

This trip to NY state I put her house on the RE market and am pondering what to do with her car.  Will probably buy it from her since it is not a protected asset.

 

So, me just telling a portion of the details of this whole situation makes me realize no wonder I feel like benzo flu with an energy drain. 

 

Thanks for lending an "ear" so I can muddle through this.  But on a bright note coop my BP is doing much better, no more waking up with a panic attack!

 

Sweet Pea, modern medicine is keeping people alive past the time they should be.  My ex hub is in a nursing home. He suffered a massive stroke that should have killed him.  and in an earlier time in medical technology, it would have.  it has crossed my mind that these old people are 'income' for the medical industry.  they are kept alive, for what purpose I don't know.  I surely would not want to be living in the condition my ex hus s in.  I really don't see any quality of life.  My hope is I die in my sleep before something like that happens to me.

As for him coming home, he wanted to come home, but the level of round the clock nursing he required made it impossible.

 

Just saying I understand what you're going through.  And they get selfish and demanding like children when they're so sick and so old. she's in the right place, where she can be taken care of properly.

[[Gr...]]

Good Morning ... well ... still sticky and humid and non-refreshing ... and ... those experiencing the forest fires and smoke have it a lot rougher ...

 

Finished 22 months yesterday ... had forgot about it and didn't even think about it until this morning when I looked at the calendar ...

 

No head pressure and benzo belly for two days ... guess that was the weekend bonus ... 

 

Tried for a walk this morning but still felt it too "heavy" to be walking around outside ... probably just me, but why struggle when I can sit around and think about food ... 

 

Have a good Monday Folks ... 

 

http://i1028.photobucket.com/albums/y342/schmidt1995/Sweet%20Designs/variety006.jpg

 

[move]HAPPY MONTH 22, NOVA!!![/move]

[[Gr...]]

Hello everyone,

 

Firstly sorry to hear about these fires. I tend not to watch the news so was not aware of this until I read it on here. Coop, I hope your son stays safe. Nova it's good to hear you had no head pressure and benzo belly for a couple of days. 22 months is behind you now, so fete accompli and good riddance  I I'm glad you checked in Drew as tbh I was a bit worried you hadn't touched base for a while. Going on holiday is massive, I could not do it in reality at the moment. Sometimes I think I could when I get a bit of a break, but nah, not even worth planning yet.

 

I had my dinner guests over and after I worked through ridiculous fatigue and fog, it ended up being a lovely evening and I even laughed 

My 2 even said how nice it was to see me laugh again. My friend is totally aware of what I'm going through and very understanding. She also works as a Child Therapist and offers me much encouragement.

Yesterday of course was straight back to wd (now there's a suprise). I had anger issues too which I hate with a passion, it's just an additional lump of excrement to the whole  s show!!  and today is the 1st day of a week's leave from work. Major anxiety came to the dentist with me this morning and accompanied me round town as I bought my son's school uniform. I was so spaced out the whole time, however I even bought myself a new moisturizer.

When I'd finished my errands I phoned Bristol TP for some grounding as the same old fears and thoughts about 'this is just me' and 'I'm on the verge of insanity' were threatening to throw me to the wolves.

Ok, I spoke to Ian Singleton and he said that he would not expect anything else from me at this stage. what I was going through was 'totally normal'. I would without doubt get better. Everyone he speaks to has exactly the same fears, mostly the same symptoms and 95% of people's recovery is between 18 and 24 months or this is when great improvement is felt. I totally believe him he has been dealing with this at least 25 years. I know this is nothing new, however I need to hear it over and over and I'm sure many do too. He also acknowledges it is the worst experience anyone has to through.

I'm going for my walk now as I've rested and I can feel those self critical/angry thoughts surfacing 

 

 

 

 

Marj,  very nice post

and let me add, even though I'm grumbling about not taking a cycling trip!  Ian is right, there is amazing healing going on 18-24.  I'm in the middle of it right now.  I went from not sleeping and feeling like you do, to sleeping a lot, and I don't have that desperation wondering how i'm going to make it for the next ten minutes.  I can feel it passing, I swear. 

 

Hang on, this ends, we really do heal.

[[Co...]]

I guess when I imagine my mother at 88 I see a woman older, losing pieces of her life, maybe not being able to be supportive or understanding. I guess I see an elderly woman needing my supoort..  especially as I heal and have more to give. I haven't written a success story yet, but I know that I am better enough to help where I can. ....I do have to say, my mom didn't get any passes. She was suffering lung cancer and the debilitating treatments for it. She looked 95 not 63. 

.    I don't want to discourage any conversations about getting through this with family members. It takes its toll and I am now taking advantage of feeling better to repair those relationships. Lots of people couldn't 'be there for me'.  .We have said it so many times, " how can anyone understand this unless they have been through it". I am just trying to take the track of, ' now that I am better I want to be strengthening my family relationships'..  We have all been disappointed in our relationships with this....for me..  time to move on and make them better.  Just my opinion .... coop

 

Coop, I'm so glad I opened the thread and read this post first.  On this topic.  I know a woman in the community going through Ambien and AD withdrawal.  She's having a horrid time of it.  Recently she had to go to the ER for a complication related to bariatric surgery, emergency surgery.  The recovery has been terrible for her, exacerbated by PAWS.

 

She was in the hospital 12 days.  I was up to visit a couple of times, including waiting while she was in surgery, which took its toll because I'm so wobbly myself.  Her elderly mother and father took public transportation quite a distance to be there for her.  Her partner was there every day.  So people were showing up for her.

 

She complained to me on the phone that "nobody had been there for her and she felt abandoned."

 

Her comment made me realize that nobody can really be there for us.  I remember feeling abandoned in tolerance, that nobody was there for me.  people were there, in the beginning at least.  I think we have to consider withdrawal as a significant, debilitating for some, illness that goes on a long time.  Some of us don't want to be alone, some of us prefer to be alone, but either way, there's nothing anyone can do to comfort us.  My point, I think, is, this journey is lonely, terrifying, physically and mentally distressing.  Even if people are 'there,' they can't make it go away, they can't make us feel better.  and that's a terrible burden to put on anybody.  I found myself on the other side of the sick bed, if you will.  I found myself faced with her pain, her irritability, and the feeling that I wasn't doing enough.  (And this is not a selfish woman, when she's normal, not suffering)

So I find myself softening on my stance that I was 'abandoned.'  After all, what could people have done for me?  Were my young sons supposed to put on hair shirts and suffer with me for two years?  should people stop living because we are sick?  When I found myself in the position of caregiver, I could see how exhausting a sick person can be, how draining it can be.

 

What I did was remind her that people had come to see her, that people were there for her, and that this withdrawal is a very lonely journey.  But most important was what I learned about myself, my own feelings of resentment and abandonment.  And so, like you, Coop, I am attempting to rekindle the relationships I consider of value, that I don't want to lose.

 

.....So true Green.  ....There is just no way anybody can understand this unless they have been through it, and even at that we all heal differently and have different sx. ...18 month, 2 years, 30 months....that is such a long long time for the people who love us to miss the people we once were, let alone be subjected to the pain and mood swings we go through....to watch us put our lives on hold, missing holidays and burthdays. There are so many silent heroes on this thread....the spouses who stand by thier w/ding wife/husband. .    I often wonder if I could do it. ..That's why I think this thread and everyone here has been so important to me..  I have never felt alone in this so I tried not to expect my family to get any of this. .  If not for this support group I don't know where I would be....well, actually I do.  I would have reinstated. It was hard on my family when I didn't go to birthdays and barely spoke a word at Christmas, practically chasing everyone out before they opened thier gifts. ...It was such a departure of what they have known all thier lives...my absence and inability to ' be there' for them was disappointing and confusing....they couldn't have possibly begun to understand this or figure out what to do....2 years is a very long time to be expected to have 'compassion on tap'....

.....My daughter has been very supportive and gets it as much as any ' normal'  can, but I tread very lightly and try to keep it as normal as possible... I really do bring all my crying and complaining here....Thank god for this thread....well, that was quite the rant. I just feel so bad for our families.  They didn't sign up for this any more than we did.    ...coop

[[Fi...]]

I guess when I imagine my mother at 88 I see a woman older, losing pieces of her life, maybe not being able to be supportive or understanding. I guess I see an elderly woman needing my supoort..  especially as I heal and have more to give. I haven't written a success story yet, but I know that I am better enough to help where I can. ....I do have to say, my mom didn't get any passes. She was suffering lung cancer and the debilitating treatments for it. She looked 95 not 63. 

.    I don't want to discourage any conversations about getting through this with family members. It takes its toll and I am now taking advantage of feeling better to repair those relationships. Lots of people couldn't 'be there for me'.  .We have said it so many times, " how can anyone understand this unless they have been through it". I am just trying to take the track of, ' now that I am better I want to be strengthening my family relationships'..  We have all been disappointed in our relationships with this....for me..  time to move on and make them better.  Just my opinion .... coop

 

Coop, I'm so glad I opened the thread and read this post first.  On this topic.  I know a woman in the community going through Ambien and AD withdrawal.  She's having a horrid time of it.  Recently she had to go to the ER for a complication related to bariatric surgery, emergency surgery.  The recovery has been terrible for her, exacerbated by PAWS.

 

She was in the hospital 12 days.  I was up to visit a couple of times, including waiting while she was in surgery, which took its toll because I'm so wobbly myself.  Her elderly mother and father took public transportation quite a distance to be there for her.  Her partner was there every day.  So people were showing up for her.

 

She complained to me on the phone that "nobody had been there for her and she felt abandoned."

 

Her comment made me realize that nobody can really be there for us.  I remember feeling abandoned in tolerance, that nobody was there for me.  people were there, in the beginning at least.  I think we have to consider withdrawal as a significant, debilitating for some, illness that goes on a long time.  Some of us don't want to be alone, some of us prefer to be alone, but either way, there's nothing anyone can do to comfort us.  My point, I think, is, this journey is lonely, terrifying, physically and mentally distressing.  Even if people are 'there,' they can't make it go away, they can't make us feel better.  and that's a terrible burden to put on anybody.  I found myself on the other side of the sick bed, if you will.  I found myself faced with her pain, her irritability, and the feeling that I wasn't doing enough.  (And this is not a selfish woman, when she's normal, not suffering)

So I find myself softening on my stance that I was 'abandoned.'  After all, what could people have done for me?  Were my young sons supposed to put on hair shirts and suffer with me for two years?  should people stop living because we are sick?  When I found myself in the position of caregiver, I could see how exhausting a sick person can be, how draining it can be.

 

What I did was remind her that people had come to see her, that people were there for her, and that this withdrawal is a very lonely journey.  But most important was what I learned about myself, my own feelings of resentment and abandonment.  And so, like you, Coop, I am attempting to rekindle the relationships I consider of value, that I don't want to lose.

 

Very well written post, Green.  You definitely sound like somebody's who's healing.  I think this is what happens with us--when we feel well, the forgiveness just comes naturally.  (Probably why people don't want to bother finding somebody to sue.)

 

I do feel, personally, though, that mine was not a case of there being nothing that could help so it's fine the people who completely disengaged.  I was lucky enough to have a handful of people hanging onto me, just staying in touch, really caring how I was doing,  and just that was a huge help.  My youngest son, for example, really stepped up in the second year, making a point of phoning me every other day, just to check in.  He had nothing magic to say but I let him know that I didn't expect him to heal me.  I just liked hearing about what was going on in his life.  I made a point of talking as little as possible about MY crap.  It was a pretty simple therapy really, and one anybody else who cared could have employed.  In the end, though, we all really are alone in this.  Even with my husband saying all the right things he'd learned to say, in my darkest hours it was like his words couldn't even get through to me.

 

So, yeah, point taken--we really do have to haul ourselves through this on our own.

 

In the end, it's behind us, and we have better things to do than tote up the ways we felt neglected, because we're too busy getting back to living our lives and re-engaging with those wno now need our help.  And now we are people with increased empathy for others and what they may be going through that we can't even see.

 

I'm so glad to hear you sounding so together!

 

By the way, my mother's surgery may very well be postponed because of this fall she took Saturday, so all the drama of how we will all deal with it is back in air.  One day at a time--tomorrow I drive her to the wound clinic.

[[No...]]

Green ... thank you for the "cake" ... mostly downhill, yes ... a bit of uphill still left to cover ... 

[[Si...]]

I forgot to say congrats on 22 months Nova!

[[Te...]]

Hi everyone..

 

I went to a rheumatologist today due to high inflammatory markings in salivary biopsy.....for burning mouth....

Possible sjogrens...

Anyway....wants me to try predisone ....low dose for one week to see if it helps relieve problems....to pinpoint issue....

Has anyone taking predisone ....or a steroid ....and do o.k?

Just nervous.....don't know what to do...

Love any thoughts or suggestions..

TM

[[Co...]]

Hi Texas....I have RA...Sojgrens is a stand alone rhuematological autoimmune ...or it can be a sx of RA. I have had a few prednisone therapies at low dose. I tolerated it well and got good relief of severe flares. It just depends on your individual sx, some people have no side effects, others can not tolerate it. The good thing about prednisone is that (1), it can be very effective and (2), if you do get side effects they subside quickly after you discontinue the dose...like subside within a few hours. It's not at all like benzos or pain meds that stay in your system . ...I had some mild to moderate side effects.....some restless sleep, little appetite and some moderately wierd dreams... having said that, I thought it was worth it because the relief was so profound. ...I am glad that you are seeing a rhuematologist. IMO it is worth a trial . It is not something that you want to use long term or frequently, and doctors don't prescribe it in that manner....at least mine doesnt. I have had 3 therapies of it ( 10 days each )  in 15 years.....good luck.. .So sorry you are suffering like you are. I hope you get some relief..  coop

[[Co...]]

*individual system*... tolerance depends on your individual system.....sorry about that. 

[[Fi...]]

Texas--I took ten days of prednisone and went completely manic.  It was actually kind of fun!  I didn't leave the house or talk on the phone or email anybody because I knew I sounded crazed.  Instead I just stayed in my office and wrote--well--like a maniac.  I even wrote at night since I couldn't sleep.  The sleep I did get was thanks to Xanax.  My reaction was rare.  A lot of people just get angry.  But when my doctor heard what had happened she put in my file that I was never to be given it again.  She said they had one guy who went manic and never quite came back.  I also put on five pounds in ten days because for most people it ramps up the appetite.  It's powerful stuff. 

[[Te...]]

Coop....have you taken any steroids since you stopped benzo's?

 

Was told it effects the  GABA .....I don't need anymore symptoms.....that's why I'm worried....

 

He's only suggeting a week....super low....he wants to see if it helps so he can get a better idea...

 

My salivary gland biopsy came back extremely high in inflammatory cells...stating grade 2 for sjogrens...but my blood test normal bur guess this can happen

 

I cry everyday due to burning mouth ...my mouth is so bad....I just don't get it....this all started way before I stopped benzo....

Ever since a root canal tooth broke....my health has gone down hill.....stopping benzo has just made my symptoms worse...

 

Hugs!  TM

[[Co...]]

Texas, I had a 3 day course while in acute..  with no worse sx than the acute was already giving me. I have 3 friends who also have RA, they have all had prednisone for severe flares. Not one of them has had detrimental side effects. The relief can be profound and I would not be overly concerned on a low dose. I have never ever  heard of " mania that the person never comes back from".  I think you will get a more balanced opinion if you post your question on the 'Other Medications' board.  Only you can decide. And there is no reason for any of us on this thread to scare the living daylights out of you. It could bring you goid relief and help your doctor diagnosis your burning mouth. Burning  sensation in mouth eyes and throat are red flag sx for Sojgrens. which has other sx .

      It is easily discontinued if you have side effects. I am sensitive to everything and I tolerated it well and it helped me immensely.  . IMO.....not everything is w/d, we do get sick with other conditions, have injuries, need surgeries etc. I understand the trepidation of considering other drugs after benzos, but we also have to take care of ourselves.  Low dose prednisone in my personal experience was safe, tolerable and really helped me. If I needed it again I would take it. 

  I would post it on the Other Medications board....talk to your pharmacist they will generally tell it to you straight and have in depth understanding of the drug. They would be a goid resource to ask about " going manic and never coming back"

  ..Maybe someone else from this thread will chime in.

...sorry you are going through this Texas.  ...coop

[[Fi...]]

Coop--she asked if we'd had experiences.  I did and so I answered.  I thought we all agreed here that knowledge is power.  Not, apparently, as usual, when the knowledge comes from me!

 

For the record, TV journalist Jane Pauley went manic on Prednisone and slipped into manic depression.  She wrote all about it in her memoir "Skywriting." 

 

I did point out that my reaction was one of the rare ones, but it's the thing that made me think perhaps my brain wiring was a bit sensitive.  Since that seems to be the case with a lot of us here, I think it's good to be forewarned, I'm sure you'd have to agree.

[[Co...]]

Texas, yes...it is very common for autoimmune disorders to have some clinical positive indicators and some ambiguous lab results. Autoimmune is not always easily diagnosed . If your biopsy indicates stage 2 Sojgrens and you are crying from a burning mouth IMO .  you are doing the right thing in trying to find out if there is another cause. Challis, one of our moderators always advises that pain that doesn't go away or at least comes and goes should be evaluated. I agree with that. If it is a w/d sx then you have the reassurance that it is not serious or permanent, if there is a problem it can be addressed and treated.  I am so sorry your burning mouth is giving you so much pain.  Getting a diagnosis does not mean that you have to take any and all medications that your doctor might prescribe, but it does give you starting point to discern that it quite possibly is not w/d and you can start from there deciding how much treatment you want or don't want and to get a second opinion and consider other treatment options like pt, accupuncture, naturepath etc . . but it makes sense ( to me) to try to figure out what is what.  ....

[[Co...]]

FJ, no, actually and truthfully I do not agree. Telling someone that your doctor told you of a pt who ' went manic and didn't come back'  is ( imo).. not helpful.  It's sensationalism at someone else's expense. .....maybe you and I can respectfully agree to disagree. ...coop

[[Fi...]]

Coop, we definitely do not agree on what's helpful.  When I tried to reassure Drew about Propranolol after my 25 years on it, you thought best to send him Googling and looking for scare stories.  To me this seems like you want to argue with anything I offer, whether I'm reassuring OR scary. 

 

It doesn't matter because I will now be going off this thread.  I'm done!  I won't read it and I won't post.  You have finally successfully scolded me away.  It bothers me to think of  everybody always reading your run-to-the-doctor take on everything without any opposing advice, but I just don't have the time or energy to keep reminding people of the opposing viewpoint that has seen me through to recovery with a minimum of doctor bills, tests and stress.

 

There is no wisdom for me on this thread, nobody further out in healing with similar life experiences to deal with that can share stories to help me.  I'm well now and need to devote my time to re-entry.  I would offer to share stories of life on the well side as HealingHope has so kindly dropped in to do from time to time, but the triumvirate here has made it fairly clear that since I could never quite play by your rules, my healing is more a cause for resentment than celebration. 

 

I wish speedy healing for all of you who post regularly and also for the lurkers who follow these debates. Benzo withdrawal is surely the worst thing any of us will ever go through, but we will all heal in the end.

 

 

[[mr...]]

Different perspectives, & differing opinions...

Different backgrounds and different mindsets...

Different environments and different upbringings...

 

While in settings that house a large variety of backgrounds, opinions, & experiences, I've often heard it described as follows: taking a "grocery store" approach to everything you hear & read...one might be coming in looking for eggs and milk...and another might need bread and apples...so when we walk by and see the apples, we leave them just "be" and move along to our eggs & milk...and leave on the shelf the things we do not find on our 'grocery list'...and who knows, perhaps someday we may need some bread and apples...so its nice to know which isle to find them for now...

 

Holy smokes, I reread what I just wrote, and it feels reminisce of something my dear Nova may write...praise God if some of that wisdom has rubbed off onto me, brother...

 

FJ & Coop ~ love to you both. I've gained many a 'grocery item' from you both as the time has passed growing healthy together on this thread. And I've 'left some items on the shelf' as well. I am hopeful to continue to be able to do so in the future as well. Peace to the both of you tonight,

 

Mrs.

[[No...]]

Hi Mrs ... I see we shop at the same store ... 

 

Good to hear from you ... hope you are doing well ... 

[[No...]]

Good Morning ... my "visitors" are back ... the belly stuff and head pressure returned last evening ... woke up this morning jittery and nervous ... and the heavy congestion is back as well ...

 

Had a cheerful couple of days ... and they will return ...

 

Have a good Tuesday everyone ... 

[[No...]]

TM ... I hear you are in a very hard place with trying to determine what may be best for you at this time ... and when we are suffering an effect of illness making a decision as to treatment can be difficult and actually contribute to our anxiety and suffering ...

 

Know that whatever you decide to do will be supported here ... the goal of this thread has always been to provide reassurance from personal experience and to support whatever each of us decides to do ...

 

This is a long road each of us are travelling ... kindness and compassion will see us through to our healing ... 

[[No...]]

Hi ...

 

A teaching offered to me a long time ago ... and one that took me quite a while to "let in" and practice was connected to my desire to support and reassure others ... after giving support or reassurance I was told the difficult task of being "unattached to the outcome" was a necessary lesson for me to learn and to practice ...

 

In essence, this teaching was to give my support or reassurance and then to let it go ... allow it to become whatever it would bloom into ...

 

For me, a difficult lesson to be learned in the practice of compassion ...

 

In this universe we inhabit ... love is never lost or wasted ... and even though sometimes we may not see the flower it becomes, know that the flower will bloom somewhere ...

 

[[Co...]]

Mrs....thank you for the grocery shopping tips.  Good advice. Nice to see you... How are you doing?... You sound positive....as always....and you always leave a little positive when you come by... .thank you.....coop

[[Co...]]

Nova, visitors....hope thier stay is short... So glad you had a couple of days without the head pressure...even a couple of days gives us a chance to catch our breath and go another round. ..any rain in your weather report?  Hope you can get out for a ramble soon.....Do your jitters wear off after you have been up for awhile? ....Wishing you some sunbreaks....and rain.....coop

[[Co...]]

Hi ...

 

A teaching offered to me a long time ago ... and one that took me quite a while to "let in" and practice was connected to my desire to support and reassure others ... after giving support or reassurance I was told the difficult task of being "unattached to the outcome" was a necessary lesson for me to learn and to practice ...

 

In essence, this teaching was to give my support or reassurance and then to let it go ... allow it to become whatever it would bloom into ...

 

For me, a difficult lesson to be learned in the practice of compassion ...

 

In this universe we inhabit ... love is never lost or wasted ... and even though sometimes we may not see the flower it becomes, know that the flower will bloom somewhere ...

 

 

..........As usual .....spot on sensitive advice... If I have ever come across to anyone as pushing anyone in one direction. I so apologize. ....I agree with Nova, we can only share our own experience and thoughts and leave people as free of influence as possible.  I hope I have always expressed that our only goal is to be free of benzos.....how we do it ....and whatever path we take to do it is individual. Compassion and support, giving and taking has always been the core of this group. .....Thank you Nova for the diplomatic and healing post.....coop