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Eastcoast's Trip


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It has taken me a long time to do this, but Im ready. My story is long, and may scare some of you, but it's also a message of hope. I am not FULLY healed yet, but compared to how I was when I was active here - boy oh boy, Im CURED.

 

My story begins years ago. When I was a child, I had trouble going to sleep. 32 years ago I graduated from Nursing school and began working as an RN in an inner city hospital in Washington DC. Back then, only narcotics were locked up and "counted." Many nurses and doctors helped themselves to pills, and so did I. I began taking various benzos. They helped immensely....I could fall asleep easily. This quickly became a habit, although I did not "feel addicted."

 

In Nursing school, we were told that benzo withdrawal could last up to 4 weeks and the danger was seizures. Never once did I hear that this is far, far from the truth. So, I continued to take my benzos almost every night.

 

During those many years, I gradually became depressed. And over time, other things happened but I did not see it at all.

 

In 2003 things started to fall apart. My health started going bad. Id had major surgery (for obesity) and was rapidly developing osteoporosis (which is not unusual). I also began falling. I would just go down.

 

In 2006 I fell and had extreme neck and shoulder pain. Saw a surgeon, had a laminectomy, recovered. He and my medical doctor knew I was on benzos but didn't make the connection between the fall and the neck injury. I had started going to a psychiatrist for depression, and now was legally on a benzo: Klonapin. PLUS Ambien. Both in large doses. Plus two antidepressants, although over time these were changed, doses adjusted. I also drank a lot of beer, most nights, and had for years.

I began falling more and more often. At the end, I was falling every day.

 

I should explain to you that the dates of various injuries and surgeries is still unclear to me. One thing that was happening over time was my memory got bad.

 

Other things were going bad, too. I stopped reading books, many years ago. I couldn't remember plots or characters, so why bother?

My social life wasn't good; I had social anxiety, plus was in a sort of "hibernation", thanks to benzos. I gradually became unengaged with life.

 

My health really began to get awful. I fell, and severely fractured my right femur (the big bone in your upper leg.) It splintered into bits. I passed out from the pain. At the hospital I was told I might lose the leg, but a decent surgeon with war experience somehow patched it together. It took me several months to recover, walk again. I began having serious chronic pain, and began taking oral narcotics on top of all the other medications. I think at one point, my med list had 14 drugs on it. My medical doctor was now concerned, but if he said anything, I don't recall, and would have brushed him off anyway.

 

I just did not get it.

 

Fell again, and opened up the healing wound on my leg. I was so out of it, I did not go to the hospital for over a week. Ended up staying there 10 days for IV antibiotics.

 

And one of those antibiotics was a flouroquinolone.......I went into extreme anxiety. My doctor had not ordered my Klonapin or Ambien, and the antibiotic threw me into acute withdrawal. But no one "got it" and nor did I. I begged the nurses to call my doctor but it took days. Then, they called in a psychiatrist, who thought I was just "an anxious lady." But he ordered a single dose of Klonapin (after trying to put me on an anti-psychotic." That single dose set me straight until I got home and could take my prescriptions. 

 

A couple months later I fell again, and broke my right hip. Surgery repaired it, and once again I was put on a flouroquinolone, and went into withdrawal. Same thing happened, but this time no psychiatrist was called in. My medical doctor was now extremely concerned, and reported me to the drivers license bureau for being an unsafe driver. I stopped driving....for about a year. A friend drove me everywhere, and also began to take care of me and my cats.

 

I was using a rolling walker to walk....all the time. I still had severe pain, and the pain doctor suggested an implanted pain pump. I agreed, and I still have it. I stopped taking oral narcotics. But my mind was still fuzzy, my memory shot, I was slurring my words and forgetful.

 

In June of 2012, I needed refills for all four psych meds. I called my psychiatrist, and was told he was closing his practice and they couldn't see me. I had seen this man for 12 years.

I got a referral to another psychiatrist but couldn't see her for over a month. I ran out of Klonapin, and had only two weeks of Ambien left. I went to a walk in clinic and a sympathetic (but suspicious) doctor gave me a script for just enough to get me to the new doctors appointment.

What I did not know was that my medical doctor had spoken to my old psychiatrist about my benzos, and then called the new one.

 

I went for my appointment. It was a nightmare. I was told I had to sign into the local drug rehab "or else." I had worked as an RN at that facility, so sure didn't want to go, but I thought I had no choice. And I didn't! I was going into withdrawal, and figured a rehab would be able to help me.

 

Not so.

 

At the rehab I quickly went into acute withdrawal. I could barely see. I was having serious trouble walking even with the walker. I was having severe twitches of various muscles, especially my legs. I got this weird sharp pain in my abdomen. I had a headache, dry mouth. Couldn't eat or drink.

I was not given anything for my symptoms, nor did anyone ask me what I was feeling. I knew they could give Clonidine for my blood pressure (a beta blocker which has anti-anxiety effects-) but they said my BP wasn't high enough. 150/90 IS high enough.....I knew their protocol.

I was harassed to go to "groups", which consisted of everyone sitting around filling out little forms entitled things like "My mood of the day is...." with little faces you could circle to indicate your mood.

The unit I was on was the same one I used to be the Assistant Nurse Manager of....the Baker Act unit. In other words, the pone unit that would take anyone, whether young and severely psychotic, or elderly and demented. There was no room on the Drug/Alcohol Unit.

So - I knew many of the staff, which was humiliating. Also some of the patients.

By the third day I was hallucinating, and became severely paranoid. I believed with all my heart that "their" plan was to have me permanently committed. So I certainly didn't share what I was seeing, thinking, feeling or experiencing!

It was supposed to be an 8 day "rehab." (The unit was trying to follow the Drug Unit protocol-). But on the 5th day the social worker told me my insurance was refusing to pay. I was sent home the next day.....to my relief.

 

When I got home I was still hallucinating, and was sure "they" were going to show up to take me back there. I wrote out instructions of what to tell "them" to my friend who stayed with me.

 

My acute withdrawal lasted about 3.5 weeks. Nothing cleared up quickly...it has always been a gradual, painstakingly slow process.

 

The hallucinations stopped after (I think!) about a week. But I still had physical stuff: abdominal pain, nausea, diarrhea. Muscle twitches and cramping. My skin became ultra-sensitive, everything irritated or itched. My own hair felt itchy and "weird."

 

On Day 14 of this, I had a day when I "woke up". It was a profound feeling of awakening....and I "saw" how horrible my life had gotten. I see now that I was sereing everything with an exaggerated sense of negativity but I think I needed to do this. I saw how my health had gone bad, how my mind was failing. How I could no longer work. That I was dependant. I looked around my house and saw how filthy it was.

 

Believe it or not, cleaning my house was the very beginning of my recovery! I scrubbed and cleaned and scrubbed and cleaned. I wasn't to smart about it - used bleach on certain fabrics and items which ruined them....but hey, everything was CLEAN.

 

I began to develop a weird fear of insects, especially ants. I live in Florida: bugs are common here. And I had enormous gardens outside, which attract ants and other bugs. So, there were plenty inside the house.

 

But Fear became my worst and longest-lasting symptom. I was afraid of EVERYHING. It was beyond words, really. I felt so fearful I was tip-toeing around my house, with my butt muscles all tight.

 

I had several full-blown panic attacks, plus even worse night terrors. I thought I was going to die.

 

I knew I needed help, but because Id worked in the Psych field, I knew there wasn't much around, and I was still paranoid about being committed.

I began tentatively searching the internet for help with benzos. My firstb "hit", unfortunately, was a site labelled "BenzoBuddies." But it wasn't the real site, it was the site of a cazy man who HATES BB! I was terrified of this site, and gave up trying to find real help for quite a while.Every other group I found was no longer active.

 

But finally, I ventured back onto the net, and found the real BenzoBuddies.....and THEN I began, slowly, to understand what I was going through, get support and truly begin to get better.

 

I cannot thank this site enough. In fact, as I sit here typing, my eyes are filling weith tears. Im holding back sobs. I remember the deep relief I felt in learning that I had not gone crazy: this was withdrawal. I read what the Mods wrote about having faith that it will eventually get better and I trusted. Magrita and River Wolf were my heros: both offered me compassion and knowledge. I began making friends on BB, and am still close to several.

 

This is all so difficult to talk about. Im am sure I am forgetting things, but that's okay, I will add them when I remember. What is important is that I get this started.

 

Now, before I go any further, I want to tell you the good parts:

 

I am not the same person as the one who began this long journey. My health has gotten so much better. I no longer use the walker, nor even a cane. Sure, I still have osteoporosis, but I am NOT falling anymore. I fainted and fell twice during withdrawal (and broke a rib) but not since. My other health has improved: I no longer have IBS. The vast majority of physical symptoms have left, leaving a little tinnitus left. I have normal "old lady" aches and pain (I am 64 now). I am not severely depressed. I don't have social anxiety anymore, except mildly on occasion. I no longer feel that weird Terror.....oh, once in a while, it shows up but doesn't last long at all, and now I know what it is and am not worried.

What is left?

Well, I have severe insomnia. If I sleep 4 hours its a great night, Most nights, its 3 hours. I still am super-sensitive about dirt, grime, and am meticulous about cleaning. Bordering on obsessive but NOT a "weird" obsession. I am just very clean in how I try to live.  Sometimes, my skin is still too sensitive but again, I know what that's from and ignore it. Im still not very social, but maybe that's just how I am.

I read again! I love reading! I remember plots and characters now without trouble.

I have gotten back into my arts and crafts stuff, when I have the money for supplies.

I have developed new interests. I feed the neighborhood squirrels and birds and get such a kick out watching all that life going on outside.

I sold my house and moved into a rental apartment in a small town 20 miles North of my old place. I hated it at first (it was filthy when I moved in!) but Im getting to like it now.

 

One thing bad that happened during my withdrawal was losing four of my five cats. Some of you know about this....it was awful. First one, then another. And I was in no shape to handle it, so I stuffed it all inside and still deal with it.  A couple months ago, I adopted a new cat, Oreo. He was a declawed kitty someone abandoned. I was feeding him. But when I saw he was declawed, I brought him inside. And he's a doll. He and little Miss Peggy don't get along yet but they divided up the Territory, and co-exist with each other.

 

Time to take a break from this epic.

 

I love you all, and want you to know something......I know for a fact that I had one of the worst withdrawals known on this site. In fact, its hard to put it all into words you will understand. But it was simply awful, horrible, frightening, unbelievable. Yet - I have largely recovered! And if Eastcoast can get better...............YOU CAN.

 

eastcoast62 (Annie)

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You're a fighter! You made it and thank you for coming on board and sharing with us. We need more success stories and I am soooooo happy for you. Sorry that you lost 4 of your 5 cats :-( but you made it through that too.

 

Many blessings and may the healing continue!  :smitten:

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Hi eastcoast, Hi Annie, :thumbsup:

i remember you ever so well, the ants, the cleaning and the sad episode with your cats. i was new to the Forum but remember one post where you mentioned having a chat with someone,

who just stopped taking their benzo without any hassle and you said.......

''i wanted to slap her '', made me laugh so much even though i was very ill.

 

wow, you have been through a lot, what an amazing story. so happy that you have

recovered again, enjoy your new Life and thank you for coming back, take care.

claudia. :smitten:

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[9f...]

Thanks for coming back EC and sharing your awesome story.

 

I can feel your enthusiasm for life in your words. So happy for you.

 

Love mandala  :smitten:

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but remember one post where you mentioned having a chat with someone,

who just stopped taking their benzo without any hassle and you said.......

''i wanted to slap her '', made me laugh so much even though i was very ill.

 

 

I had a friend the other week that after (1) week she was in the clear of her W/D symptoms...when I told her everything I was going through she said, "Oh maybe it's something else because all I went through was blah blah blah..."

 

I wanted to slap the mess out of her...and she is also healed from Lyme so I have distanced myself...all I need now is encouragement.

 

Glad I have this site....folks are so understanding :-)

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but remember one post where you mentioned having a chat with someone,

who just stopped taking their benzo without any hassle and you said.......

''i wanted to slap her '', made me laugh so much even though i was very ill.

 

 

I had a friend the other week that after (1) week she was in the clear of her W/D symptoms...when I told her everything I was going through she said, "Oh maybe it's something else because all I went through was blah blah blah..."

 

I wanted to slap the mess out of her...and she is also healed from Lyme so I have distanced myself...all I need now is encouragement.

 

Glad I have this site....folks are so understanding :-)

 

odd isn't it ? some people get hit so hard and others don't.

but don't worry LM, we will make it as well, i bet ya on it.  :)

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Thanks for sharing your story annie.  I know you helped me a lot when I was worried so much about my withdrawals and I hope I was able to help you out a little as well.  But all in all, YOU did all the work and got better, and you should be proud of yourself for coming out on the other side of such an ordeal.

 

Hope you're well.  :)

 

-Marty

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Morreweg it is strange indeed...then when I told her that a lot of my symptoms (7 of 10) really hit the fan once I got off this nasty drug she asked me again if it is just W/D or something else....

 

Yes she asked me again...sigh.

 

But we will get there...I'm pretty much done with Lyme and a couple of my medical practioners think a few of the reamining symptoms I have left are due to W/D and I agree with them 100%.

 

We will make it!!!!!!  :smitten:

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East coast! Yeah your back! You were one of the first to embrace me when I joined well over a year ago. You were always so available and kind. I am so glad you are seeing major progress, it is time for you! I too remember your fear of bugs and the terror you lived with, so very glad it is better.

 

Will you share more of your symptoms and healing timeline with us? I can't remember, did you have DR? Mine is constant and deep. No improvements for me yet at almost 14 months.

 

 

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Hi Annie :hug:

 

This is wonderful to read, what an inspiration you are. Thank you for coming back and posting your story, it will help so many of our members.

 

It was a pleasure to have met you (virtually). You were such a great support to others while dealing with your own withdrawal.

 

Wishing you the very best for the future, be happy my friend!

 

Magrita :smitten:

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Welcome back, Annie!  I'm glad you're doing so much better now, and that you found such a sweet little kitty.  My two cats, both rescues, are such a big part of my life, and they're both sweeties, for once. :angel:  I've had others in recent years who weren't. >:D

 

Your story is inspirational, especially to those of us over 60 who think we might be "too old" to go through this process.

 

:smitten:

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[a0...]

Wonderful news Annie and so good to see you here again.  :thumbsup:

I'm still plodding ever onwards and look to news like this to keep me going. I've often thought of you and wondered how you've been getting on. You were such good support for all of us here.

 

My love to you and know you will soon be free of any of those niggling remaining symptoms  :smitten:

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Oh Annie, (((((Annie)))))) :smitten:

 

You are healed...I am sure more healing will still take place....but you are well enough to come back and share your success with us.

 

I am very happy for you.

 

If you can heal, we can all heal.

 

Much love and continued healing,

Causing

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THANK YOU, EVERYONE.......SO MUCH! You guys made my day. Had to go to the dentist, waited a long time and then was told they gave me the wrong appointment time. JEEZ. I was fuming, so really needed a smile. I am dental phobic, and this dentist's office knows it.

 

 

More  on symptoms.

 

Forgot a major one, and its a weird one. During my acute WD, I literally heard a group of men singing, the same phrase over and over, rather musically, too. For some reason, I called them "The Singing Priests". The tune changed and I didn't hear anyone singing in my head, but I kept hearing a musical phrase repeated over and over. Its called "looping music," and actually its a common neurological symptom, not necessarily in withdrawal. But it drove me crazy. Now heres the strange part - I still "hear" it, only not in my ears. It loops over and over inside my mind, goes away when Im busy with something (like right now.) It changes key and tone according to my mood. It doesn't scare me now, especially since I don't actually HEAR it.

 

The sensitive skin is also a common symptom, but in any kind of withdrawal (even alcohol). I even got my long hair cut off in a stupid pixie because my hair itches my shoulders! It was cute but I hated it right from the get go and am still growing it out, months later.

The pixie made me look exactly like Jamie Lee Curtis, which isn't a compliment, to me. But people would come up to me and tell me how much we look alike.

 

I don't know if this was due to benzos, aging or what, but my hair began to go from very curly to almost straight during the later years on Klonapin. Its still mostly straight.

 

My vision was off, during withdrawal. Things often looked blurry, unreal. Some of that was DP/DR, I suppose. I had both for months. This feeling of unreality and being somehow "different" from other people....removed. Everything looked strange, ugly. They started to lift at about 9 months.

 

A word to all of you:

Don't start comparing yourself to others here! Its a terribly dangerous trap. When all you have is the written word to go by, its all too easy to misunderstand. And, frankly, it IS hard to describe this stuff accurately, isn't it? So, if you start comparing symptoms, time lines and stuff like that, its easy to start wondering if YOU are the one little person who wont heal, the one who is different, the one who really has gone insane.

And you will heal.  YOU WILL.

Its often said here that TIME IS THE ONLY HEALER. I believe this with all my heart! There is no supplement, diet or exercise which will make this go faster, and you can waste a lot of money on that crap. Yes, a decent diet and excerise are good, as they are under normal conditions. But they do not make withdrawal easier or go faster. I tried every possible supplement and none did a thing. And they cost me a lot of money, which I simply do not have.

It is my opinion that psych meds in general are dangerous and cause problems. Nor  (IMHO) do they fix the problems they are supposed to fix! And most have a withdrawal, to boot.

 

With all I've been through - multiple surgeries, losses, health problems......benzo withdrawal was, by far, the worst thing I've gone through. And what makes it harder is that our friends, families, physicians, employers, etc., don't have a clue what we're going through!

So, its like we go through this basically all alone.....like the Boy in the Bubble. Thank God for BenzoBuddies existence! For most of us, this place is our ONLY validation.

 

Losing the four cats was awful. But my pets were always such a comfort to me. They made me smile during some rough days. There were other days when they drove me even crazier, but that is so classic in withdrawal - irritation with loved ones.

 

There were many days when all I could do was sit on the sofa, existing minute-to-minute. Doing deep breathing (which really helped) and trying to get my mind off symptoms.

 

One thing  I thought was withdrawal may not have been! I had itching, burning gums for months....and I STILL DO! But I found out this is a possible symptom of anemia, which I have (another side effect of having a gastric bypass.B12 shots only help a little.)

 

Time to go feed the squirrels and birds. I have several nursing Mama squirrels, and one who is badly injured. Also a ton of baby bluejays and red-bellied woodpeckers. And doves!

 

eastcoast (Annie)

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Thank you so much Eastcoast for writing up your long struggle & sharing it here.

It means so much to hear from those who have been there - & to hear that we will all get well.

Many blessing to you.

May you enjoy your well earned freedom & kitty companions!

 

margaretisabel

 

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I am reaching some sort of end point with this not sleeping stuff. I am calling my insurance and hopefully can get a sleep study done. Perhaps I DO have sleep apnea. Im grinding my teeth again, too....something I had stopped after acute WD. Something is wrong, and maybe Ive been blaming the benzos for something entirely else. Its hard to tell, and so confusing. But I am getting two or three hours a night, if Im lucky. I feel crappy today, too, something ELSE I thought had gotten better. But I am NOT GIVING UP! One good nights sleep would make the difference, I just know. I have always avoided sleep studies, because if I don't sleep at home, how am I going to sleep in a weird clinic, with wires taped to my head?!?

 

Whatever......Im not alone in this sort of thing, I know. And so many are so much worse than I am now.

 

Several nights ago I was petting Peggy, and suddenly began crying. I realized it was pent up sorrow about the other cats, especially my Wilson who I still sorely miss. His funny little white face, his deafness, his way of waking me up by smacking me in the face. He was so special and dear to me. I am going to stop talking about this for now, makes me feel too sad again. I had no choice he had a tumour and was dying before my eyes.

 

I still wonder why ants became such a focus for me. How weird is that? I still hate them, and this is such a warm state, we have zillions of the little bastards. Not too fond of any insect, really. Creepy crawlies! But Im not as freaky as I used to be, for sure.

 

I wish there was more and better research on damage to gaba receptors and its permanence. I have such multiple whammies - alcohol and pills. Gosh. Its amazing Im alive, really. I used to think nothing of taking a Restoril, plus a valium, plus a Halcion, all at once. But daggone, I slept well.

 

And with me, its hard to separate whats a result of the gastric bypass and whats a result of the drugs. Bypasses take a toll on the whole body. Yes, I am thin now. And I wouldn't go back to being obese. My life would have definitely been shorter if Id stayed that way. But it may be shorter because of the surgery. Who knows?

 

Ah. One thing I know is that while on benzos, I wasn't eating any less than I am now, but I continued to lose weight. When I went into the rehab, I weighed 89 lbs and I am 5'4". I did not see how skinny I was. The social worker there (who was a sadistic jerk-) publicly tried to shame me by calling across the room, "You 89 pound drug addict, wont come to group." My paranoia did not imagine this - my roomate was a woman I had worked with at a nursing home: we were buddies. And she confirmed that yes, he did say this. I could not eat. I was too nauseous, my abdomen was very tight and painful. I weigh 120 now, and its been stable for months.

 

My hallucinations (during acute) were all about the nurses at the rehab. Women I had worked with in previous jobs. All except one....a woman I thought was hiding behind a table fan in my room at home...sent to spy on me, in case they committed me. I had never worked with her, and she was nice, in my hallucinating mind. I was so paranoid those days, I would go from window to door, checking to see if "They" were outside! I was making "Rounds," you see. Nurses do that.

 

I got so much accomplished last summer, and its a miracle. Sold my house and moved to a new little city 20 miles North. Can you imagine.....here I was, with this bizarre fear of dirt, and the day I moved into my new place, it was filthy??? I thought I had moved to hell. I am STILL cleaning up here. It galled me to put my furniture into dirty rooms, but I had no choice. And the place was crawling with bugs! OIY VEY!!!

 

What a long strange trip its been.

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Annie!!!!

 

Welcome back to BB.  You, your body, your mind and your nervous system has endured so much over the years.  But you still had the strength and determination to make yourself better and you did!!!  Your story will be an inspiration to everyone here who has had to live through so many trials both physically and mentally. Thank you for sharing your story and believe me, things will get better and better.

 

pianogirl  :smitten:

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eastcoast. thank you for your story as Iam feeling so much fear and sadness off the charts.. I am so in awe of your experience and grit...To start fresh again, move..find joy in nature...

I hope I can be like you one day..

 

Thanks again so much for your hopeful story.

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Hi Eastcoast,

 

Wow... Thank you for writing your so well deserved Success Story....  That's what you are dear girl, a "Success Story"!!  Congratulations  EC....  A beautiful, wonderful life to you and your two kitties.  Of course your heart has sadness with your other kitties having to leave...  They finished their journey EC, as they knew you recovered and had a new life waiting for you.  Guess what??  They're all fine, they're on the other side and know one day you will join them, when your journey is completed.  Of course, your new journey has just begun!!

 

Congratulations to you!  I'm so sorry you had to endure so much for so long. Though... you made it!!  Blessings always,

 

Pattylu  :smitten: :smitten:

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Eastcoast62

You are an inspiration of hope. Thank you for writing your success story, I'm so happy that you are enjoying life again. Thank you for your support throughout my recovery too!

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