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UGH it's already Sunday? Time for next cut... WAAAAAAA!


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Dear Buddies,

UGH. Again, even though I have only been part of this group for a month or so, I have tapered off of 2 mg of Klonopin (currently on 1.5 mg of Valium) and 80 mg of Opana (to 20 mg of Opana) over the last 20 months or so. (also completely off of Baclofen) I did it by myself, I kept careful logs of how I felt and figured out that when I lowered my opiate dose I was going through Klonopin withdrawal. I didn't know the how's and the why's of it, but I knew how I felt. Eventually I read the Ashton manual which validated that it was difficult to get off of Benzos and also made me decide to C/O to Valium for what I stupidly thought would be an easy taper. My point is that it may seem like I am new but I have been at this a LONG TIME.

 

I AM SO SICK OF BEING SICK like this  :(. I really am lucky that I don't have such crippling anxiety and depression (I certainly have heightened emotions for sure) but my physical symptoms are overwhelming and constant-- if I hold, or don't hold -- it doesn't matter. I can function at a very high level being sick and this has pretty much wiped me out. I am home most days, wearing some variation of sweats, cardigan sweaters, and a camisole. I feel like I have the worst case of the flu EVERY MINUTE OF MY LIFE!

 

I am at 1.5 mg of Valium. I basically went from 8 mg to 7 mg then to 6.5, 6, 5.5, 5, 4, 3, 2, and then 1.5 since May with different degrees of holding. Based on all I read I have decided to drop my dose by .5 these last three weeks and even though the end is in sight, I am so sick to death of this. Because at the end of the day, I will still have a lot of healing left to do.

 

I was diagnosed with Interstitial Cystitis 20 years ago and then Fibromylagia and then Chronic Fatigue Syndrome and the Reiter's Disease, and then Rheumatoid Arthritis. I have been on a benzo for about 12 years and wonder really how much of the illness was inter-dose withdrawal. Four years ago I hurt my neck really bad, I recovered with a long haul of PT only to hurt it again and had a bi-level cervical fusion -- because of the delay in surgery I have permanent nerve damage in my right index finger. I was always having back issues and it began to worsen when I was in PT for my neck. I eventually was in so much pain I couldn't even put weight on my right leg-- after an MRI showed herniated discs I did steriods, epidurals, and finally a series of surgical nerve blocks. Eventually through a ct-scan and x-rays I found out I had two broken bones, disintegrated facet joints at 2 levels, scar tissue on my spinal cord that had to be removed, in addition to two herniated discs. I also have cervical stenosis so there was no room for the nerves to retreat. The Dr. said it would be the most painful surgical recovery ever and he was right. It took me months and months to do better and still, I felt sick all the time. They then pointed to the fact that I was on a benzo/opiate (oops) combination and I have been struggling to reduce them ever since. Then last year I was in PT for 6 months bc both of my rotator cuffs were torn as a result of my cervical issues (calcium drips caused tears).

 

I try very hard to stay optimistic. I have always been a half-glass full kind of girl ;) I have many, many blessings. I am financially able to meet my needs, own my own home, I have 3 gorgeous, funny, smart kids, and I am happily separated from my husband  :thumbsup:. I have the support of a very understanding Nurse Practitioner who helps me stay on track, I have health insurance, I am well-educated (although I had to leave my career due to health issues). So, I KNOW that I have a better situation than many and should not complain.

 

With that said I have been sick all of my adult life. I try to face it gracefully. But tonight, as I face another dose drop and I feel sick for like the 100th week in a row, I am feeling beyond blue.

 

What if all this was for naught? Like that I really do have all these health problems and that at the end of the day it won't matter that I have gone through all of this.

 

What if I don't get better?

 

In the still of the night, when I can't sleep, this is my fear: that this is how the rest of my life will play out. And that I won't act with grace and I will become bitter and feel sorry for myself.

 

I hate dose drop days.  :'(

 

Love, :smitten:

Chrysanthemum :crazy:

 

 

 

 

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Hi Chrysanthemum, I too, lay awake at night and think the worse. Last night I couldn't clear my mind. I got back up and watched tv until I felt better. I send you strength and support. You are fighting the good fight. The only way out is through. I think you will be much better soon. You are almost done. I am sure that your kids appreciate your efforts. Mine do.

Good Karma to you.

Bear

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Wow,  you have certainly experienced much pain through this as well as other health issues.  I too am in a place where I have many things to be grateful for.  A supportive husband, daughter, family and friends...a home I love...and great health aside from w/d.  But this w/d too has taken a toll.  I suffered from MANY physical s/x throughout my taper.  I had some big problems w/ anxiety and panic attacks but only mild depression thankfully.  

 

I can say that you will get better.  I am only 3 months off of benzos and in ALL honesty I am in an extremely rough wave right now - BUT before this wave I saw many improvements with both the physical and mental s/x.  And I know that after this wave there should be some bigger and better improvements.  I have felt the same way, and feared things would never get better...and even today feeling as rough as I do I start to question things and worry more.  But then I remember how I felt last week...things were good!  Yes, I had physical and mental s/x still, but at times they were almost gone and when they did surface it was totally manageable.  

 

I am so happy you have the support from the nurse.  That is great!  

 

You also write beautifully.  I find writing very therapeutic and have kept journals throughout all of this.

 

All I can say is I know all of those feelings to some degree and I can say that tonight I am  :'(  with you.  But we do heal and once you are off of the benzos I believe you will begin to see some great improvement in many areas.

 

Thinking of you...all the best,

Schatje

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Hi Chrys

I am really sorry for what you have been going thru for so very long.  As you get to the end of your vallium taper I would encourage you to consider smaller cuts and your last cut about 10 days or more long because the half-life of vallium is about 8 days.  My doc thinks some of my physical problems are related to the benzos also.  but you are right no one can say for sure in advance so I just tell myself I want off the benzos either way because they are from hell and then there's the question of tolerance.  Hang in there we at BB (Benzo Buddies) are here for you.

 

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Hi Chrysanthemum, I too, lay awake at night and think the worse. Last night I couldn't clear my mind. I got back up and watched tv until I felt better. I send you strength and support. You are fighting the good fight. The only way out is through. I think you will be much better soon. You are almost done. I am sure that your kids appreciate your efforts. Mine do.

Good Karma to you.

Bear

Good Karma, right back at ya, Bear!! Your support means a lot to me. I hope I will get much better soon! The very fact that after 10 years of blurry vision I now have perfect distance vision is enough of an improvement to realise many others may surface as well. My kids do support my efforts-- sometimes my daughter has trouble with me not being able to fall asleep while she is out late-- "I'm fine, why worry?" is rational-- I tell her I understand that at a cognitive level, but it is not a rational fear. I CANNOT HELP IT. It makes for some long nights at times bc she is in college and wants to be out with friends. I love when they all 3 are home and I can turn off the light and sleep a bit better.

 

At the end of the day, the only way out is through for sure. This is actually the saying under my photo on this group so we think alike. I wish you a peaceful night. I try on nights like tonight to just accept that I won't sleep much and try and at least rest quietly. I have been reading a book called BROKEN OPEN that talks about how our darkest days lead us to a better understanding of our deepest selves. Let that be true for all of us!

 

Happy Healing!

LOVE, :smitten:

Chrysanthemum :crazy:

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Wow,  you have certainly experienced much pain through this as well as other health issues.  I too am in a place where I have many things to be grateful for.  A supportive husband, daughter, family and friends...a home I love...and great health aside from w/d.  But this w/d too has taken a toll.  I suffered from MANY physical s/x throughout my taper.  I had some big problems w/ anxiety and panic attacks but only mild depression thankfully.  

 

I can say that you will get better.  I am only 3 months off of benzos and in ALL honesty I am in an extremely rough wave right now - BUT before this wave I saw many improvements with both the physical and mental s/x.  And I know that after this wave there should be some bigger and better improvements.  I have felt the same way, and feared things would never get better...and even today feeling as rough as I do I start to question things and worry more.  But then I remember how I felt last week...things were good!  Yes, I had physical and mental s/x still, but at times they were almost gone and when they did surface it was totally manageable.  

 

I am so happy you have the support from the nurse.  That is great!  

 

You also write beautifully.  I find writing very therapeutic and have kept journals throughout all of this.

 

All I can say is I know all of those feelings to some degree and I can say that tonight I am  :'(  with you.  But we do heal and once you are off of the benzos I believe you will begin to see some great improvement in many areas.

 

Thinking of you...all the best,

Schatje

Thank you for your encouragement. I cannot wait for a WINDOW!!!!! This summer I took a break from tapering. I didn't really feel good but I didn't feel super sick all the time either. One night my son and I went for a walk around midnight-- I am a bit of a night owl and I love to walk at night. It felt so good-- two years ago at that time I had to relearn to walk and it took me months so it is still such a thrill for me. I had worked up to walking two miles, slowly but still... We had a nice slow walk and came home and went for a swim in our pool. I felt fantastic. I felt free and strong and so confident that things would improve. The next day is seemed like a dream but I am hopeful that that was a glimpse into my future.

 

I am incredibly fortunate that I have support from the NP. She can prescribe meds and I have seen her for counseling for the last 4 years to help me maintain focus on my health and still be a present and caring mother. She knows me very well and we have traveled this drug tapering road together. She agrees that my situation is compounded by the fact that I am on needed opiates for my back. It makes the withdrawal symptoms even worse! She now shares my concern for people who take Benzo and can in turn educate the medical community on the difficulty of getting off these drugs. She has always let me guide my own withdrawal schedule. My heart breaks for those people who are cut off by the same uncaring and ignorant Dr's who prescribed them in the first place. She has read the Ashton manual and it has changed her perspective on helping her patients come off of benzo's so that is a good thing.

 

When you calmly tell me I will get well: I BELIEVE YOU.

 

~(I pray so hard that I will)~

 

Many blessings to you and yours.

 

Love, :smitten:

Chrysanthemum :crazy:

 

 

 

 

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Hi Chrysanthemum, good on you for having a blast of its not fair, life sucks, and letting us know just how much you are really sick of it. You've had to be brave and stoic for a really long time, through some serious ordeals.  I liked seeing the waaaaaa!  This is the perfect place for expressing it.  Hope it helps.  

 

xx

 

poppins

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chrysanthemum

 

Have you considered slowing down? You have come down very fast over the last 1.5 month from 5 mg - 1.5 mg.

 

Remember that we can get blinded by the sight of the finish line, I have made that mistake a couple of times. It might not apply to you, but if you still feel very bad after your next cut, you might get some relief by slowing down a bit.

 

Wish you great health :)

 

 

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Hi Chrys

I am really sorry for what you have been going thru for so very long.  As you get to the end of your vallium taper I would encourage you to consider smaller cuts and your last cut about 10 days or more long because the half-life of vallium is about 8 days.  My doc thinks some of my physical problems are related to the benzos also.  but you are right no one can say for sure in advance so I just tell myself I want off the benzos either way because they are from hell and then there's the question of tolerance.  Hang in there we at BB (Benzo Buddies) are here for you.

 

Thank you for writing. What do you do if you take these drugs for epilepsy? Are there other drugs to take instead?

 

I do know that the half-life is about 8 days. I have been sticking with a 7 day taper for now-- the thing is I can know the arc of my week that way. Like Monday I feel this way, Tuesday I expect this... Friday and Saturday are the worst, etc. It gives me some control over the unpredictability of it. Does that make sense?

Psychologically this has taken its toll. I need to be done. I was doing a 1 mg a week taper and slowed it to .5 mg a week taper. I can't go slower than that. At least that is my plan today!

 

It is nice to have people on my side. Who would've have ever predicted this difficulty? Not me, that's for sure.

 

Happy Healing!

LOVE, :smitten:

Chrysanthemum :crazy:

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Hi Chrysanthemum, good on you for having a blast of its not fair, life sucks, and letting us know just how much you are really sick of it. You've had to be brave and stoic for a really long time, through some serious ordeals.  I liked seeing the waaaaaa!  This is the perfect place for expressing it.  Hope it helps.  

 

xx

 

poppins

HAHAHA! I try to keep my WAAAAAA's to a minimum but if I can't do it here, where else?! I really am sick of it and you are very right-- I have been very brave ;) Unfortunately I too am experiencing the waves of past emotions surfacing and I keep reliving my days in the hospital after my surgery and my at home rehab program. It was HELLISH~ I don't honestly know how I survived the immense pain and disability. I fought my way back every day only to be slammed with this drug issue-- who knew drug dependency was such an issue? I work very very hard to keep my emotions on an even keel, to be present, to be grateful and ever aware of my blessings. BUT, I am not a saint, that's for sure ;D and tonight I feel lonely, overwhelmed and sick to death of the whole thing. It is like so close to the end but it seems like it is unreachable.

 

It does help for me to vent. I can feel the anxiety swishing around my stomache. But, it is Sunday and it is the day to drop my dose so that's what I will do. Only two more Sundays to go and that my friend is a miracle!!

LOVE, :smitten:

Chrysanthemum :crazy:

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chrysanthemum

 

Have you considered slowing down? You have come down very fast over the last 1.5 month from 5 mg - 1.5 mg.

 

Remember that we can get blinded by the sight of the finish line, I have made that mistake a couple of times. It might not apply to you, but if you still feel very bad after your next cut, you might get some relief by slowing down a bit.

 

Wish you great health :)

 

 

Sure, I consider slowing down all the time. I consider going cold turkey. I think of hurling myself off a bridge :D! (jk, of course) I think about EVERY ASPECT OF ALL OF THIS EVERY SECOND OF THE DAY  :idiot:.

Because of the fact that I am having a toxic reaction to the mix of opiates and benzo my pain Dr wanted me off the benzo ASAP. The mix causes sleep apnea and fatigue and a host of other things I don't like to think about! That ASAP has taken me 20 months~so I have to weigh one against the other! When I was at 5 mg of Valium and thought about doing the .5 mg cut every 3 weeks like I had been doing prior to taking a bit of a break in the summer, I realised it would take me 8 months to be finished. I was despondent. Seriously. I had already been doing it for 18 months, I have been in a health crisis for well over 3 years and I psychologically need to see an end to this. Also, I don't feel that good anyway going slower. For me it is hell any way you look at it.

SO~ I did slow down to .5 mg weekly based on the stories I read here. And I plan on finishing at .5 mg weekly and not just jumping off at 1 mg next week. I already did adjust my plan to this. If I am way too sick next week I will hold for a bit. I am neither martyr nor saint. Just a tired, tired woman who has been trudging up this mountain for a VERY, VERY long time and needs to reach the summit.

 

LOVE, :smitten:

Chrysanthemum :crazy:

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Although you may have to stop mixing your metaphors, I ain't climbing no mountain, just roll down for the celebratory part  :yippee:

 

*GASP* surely I did not mix a metaphor! How so?!

 

Am looking forward to the celebration :balloon:

 

LOVE, :smitten:

C :crazy:

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oh er, that was me with the metaphor mix.  As you were.... sharpen that icepick, boil up the billy and take a look at that final summit.
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oh er, that was me with the metaphor mix.  As you were.... sharpen that icepick, boil up the billy and take a look at that final summit.

HAHAHA!

I can deal with drug withdrawal but, mixing my metaphors~ not so much!!

:smitten:.

~C~ :crazy:

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Hello Chrysanthemum,

 

I'm choosing to speak to you here, because I'd like to suggest something, instead of getting wrapped up in the latest misunderstandings.  Have you considered starting a blog in Buddie Blogs?  I think that would be a great place for you to hang out for awhile.  You could give us a little of your history, then others could drop by to welcome you there.  If you had a blog, I could ask you why you chose the name chrysanthemum, do you grow flowers, do you have a beautiful garden you tend to, or will again when you're feeling better?  Sometimes it's helpful just to have a place to hang out to talk about things you're doing, or feeling, or what's coming up in your life you might need some encouragement for.

 

I hope you'll give it some thought, here is the link in case you'd like to take a look at the neighborhood before you move in.  :)  http://www.benzobuddies.org/forum/index.php?board=88.0

 

Pam

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Hello Chrysanthemum,

 

I'm choosing to speak to you here, because I'd like to suggest something, instead of getting wrapped up in the latest misunderstandings.  Have you considered starting a blog in Buddie Blogs?  I think that would be a great place for you to hang out for awhile.  You could give us a little of your history, then others could drop by to welcome you there.  If you had a blog, I could ask you why you chose the name chrysanthemum, do you grow flowers, do you have a beautiful garden you tend to, or will again when you're feeling better?  Sometimes it's helpful just to have a place to hang out to talk about things you're doing, or feeling, or what's coming up in your life you might need some encouragement for.

 

I hope you'll give it some thought, here is the link in case you'd like to take a look at the neighborhood before you move in.  :)  http://www.benzobuddies.org/forum/index.php?board=88.0

 

Pam

Thank you for understanding me and being the person I understood you to be. Yes, I will consider it. I need to take a break. I am an emotional wreck. I feel settled now that I have heard from you and I am going to sign off and rest. I usually have just physical symptoms and mild depression/anxiety and now I see I have much more anxiety and now sadness. I know I can turn it around though. Thank you for reaching out to me, seriously. I hate misunderstandings and I haven't been able to settle down to heal and now I think I can.

:smitten: :smitten: :smitten: :smitten: :smitten: :smitten:

Chrysanthemum

 

I chose the name Chrysanthemum based on a children's story of the same name. SHE LOVES HER NAME until something happens where she begins to doubt it. A kind teacher steps in and admires it and she begins to appreciate her true self once again.

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