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Mentoring - those who are well (or better) reassuring those who struggle.


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Hi everyone,

 

One of the things I loved during my taper is when an old timer would come back and give a few words of encouragement. I also loved hearing that someone had healed from some weird symptom that I currently had. There were times I thought I would not heal. There were times I thought I was unique and different and worse than anyone. There were times I thought I had used the wrong method somewhere along the line and had done my system permanent damage.

 

I think these feelings of uniqueness are common. So let's start this little thread and see if the people who have gotten better with come by and say how they are. This is a sort of reaching back of the hands from those who have gone before to those who are now in the thick of it.

 

I posted a comment on my progress log a few days ago, meant mostly for encouragement, but not many people read it, so I will put parts of it here. I hope people will join me. It's a wonderful feeling to offer encouragement. It's a wonderful feeling to receive encouragement.  :thumbsup:

 

:smitten:

Flip

 

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I'm moving some of my last progress log post here for encouragement....

 

30 months after taper...

 

I no longer count days and only note it in months because it shows up as a monthly repeating event on my calendar. Sometimes I feel hesitant to come here and write. So many people continue to suffer and it feels like a I dishonor them by saying I feel well. It is not my intention. Still, telling the truth remains my unshakable intention.

 

I have been in a place of near magic lately. Somewhere I read an account of someone having a spiritual experience and he called it a thin place as in the space between being human and being spiritual is gossamer thin. I remember a couple of years ago when I entered therapy Dr. BB asked me what my goals were and I said I wanted to love life before I died. Well, I do. Love life. It's the oddest thing. It has practically no connection to events or things. It is about people and relationships and how I feel in the world. I feel an ease inside my skin that I think I have not felt since pre-adolescence. Things feel right and on purpose.

 

Today I walked my neighborhood mile twice just because it felt so great to do it. It felt great physically, mentally and emotionally.  I feel  healthy and flexible and alive. Yesterday I was stuck in traffic and I didn't care. I felt interested in the mechanics of it and completely removed from the inconvenience. I feel patient and present. I do not remember being any happier in my life.

 

Maybe life brings us all to our knees in order to heal us. My knee bending episode happened to be benzo illness. At least one of them. Without it, I'm not sure I would have stopped my headlong dash that was largely unconscious in its direction. I was living life happily most of the time, but it was missing a level of awareness that I now have. Maybe age itself would have brought that awareness, but I doubt it.

 

The big things that are different for me are that I have come to expect and accept loss as a normal part of life, including my own decline and death; I feel safe in the world for the first time ever; I feel like I am not alone, and I feel like there is purpose in things that happen. I feel like the world is bright for me according to my perception at the time, and lately I have been given these gifts of seeing those thin places and feeling so hopeful.

 

Sometimes the tinnitus is very faint. Sometimes it is a low whine. Sometimes it's a hiss. It's only on the right side. That's where I often get a headache, right in that space between my ear and my eye. It's there right now, the hiss and the headache. These things keep me grounded and I do not resent them. They remind me. They remind me of where I used to be and I feel such profound gratitude that I want to whisper so as not to disturb fate and draw attention to myself.

 

I am at the oasis. I wish I could come back and bring water to all of you who are still traveling. I wish I could come back and walk a few miles for you, carry you, even. I wish I could walk along side you and murmur low words of hope and encouragement that it does get so much better, that the colors are brighter and the air is sweeter and sometimes even this 60 year old body wants to skip or run or dance or throw itself on its backside in the grass and find shapes in the clouds and giggle with awe. There is ease ahead. There is rest.

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Thank you for starting this thread and for your words. I am in the thick of it and would love to have this thread keep going.
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It is a lovely idea to encourage other folk  who are struggling.  All I can say is there is always hope whatever happens in life.  I was an academically bright young woman but socially shy and somewhat introverted. Developed myoclonic epilepsy in my 20s and was prescribed nitrazepam in 1975. I immediately went as high as a kite, working by day, partying by night (in a holiday camp), lost a lot of weight, then tried to commit suicide.  No connection was ever made with the nitrazepam.

 

Extremely depressed and unable to work for 10 years.  Many suicide attempts.  Disastrous marriage.  No children. On A/Ds for 35 years. Managed to claw my way back.  Divorce. University degree.  Career in research in UK NHS. Health poor throughout.

 

Early retirement at age 58 due to ill health.  GP decides I should come off nitrazepam. :tickedoff: :tickedoff: Not a happy bunny at all.  >:(  Decided to try it. Symptom free 3 month taper, then 6 months worse depression and constant sexual arousal.  Not funny. >:(  Met a widower via the internet. ;D:laugh:  Lovely man.

 

Then the physical symptoms set in.  >:( >:(  Bedridden for 19 months.  Nerve pain, head pressure, brain squeezes worst symptoms by far.  BUT

 

No depression and no epilepsy after 40 years.

 

Still in bed.  Sluggish brain still prevents me from functioning physically and cognitively.  :'(  Sleep pattern has recently normalised after 2 years of chaos.

 

Life is much better now and I know will continue to get better.

 

Even in bed, I am me again.  It has taken 40 years but oh my word it has been worth it.

 

Hugs

 

LF  :smitten:

 

 

 

 

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Flip...what an excellent idea. We so desperately in need of seeing and hearing healing...in process. I am at the beginning of month 18 and in probably the worst wave since acute.  Unbelievable. I hang with the 12-18 month group and several of us are experiencing the same late wave from blue hell. We are all hanging on but completely worn out.

....We can not hear it enough...healing is circular ...we are sick and better and sick and better.  And eventually we land on better.

....So glad you are starting this thread. Yours was the first story I read all those months ago. I thought I would be done by now...It is huge encouragement to see you so well and healed..  thank you Flip.....cooperten

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LF, you are too funny.  :laugh: Your story is pretty amazing! I am so happy you have no depression and no epilepsy. Think of all the people who still are being treated for vague things that are probably attributable to benzos. It's a heart breaker.

 

I also was hyper sexual for a time early in my withdrawal. Thankfully I am married so didn't go hunting down widowers.  :D. I'm also back to normal except menopausal so things are different.

 

And yes, I think you are so right that there IS hope, whatever happens in life. Where there is life, there is hope.

 

Coop - that cyclical thing is hard to remember. I literally make cards to carry around with me that remind me I don't always understand the whole journey.

 

My psychiatrist once told me that I was in a tunnel, like a bend in the tunnel and I couldn't see light. She could look over the top and see that I had moved and was doing better, even though I couldn't see it. I keep that image in my head even now when my days are not magic. There are fewer and fewer days that aren't just wonderful, though. Honestly, I feel better than any of my in real life friends who don't have the benzo issue.

 

Hang on!

 

 

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LF, Coop and Flip...you are all amazing. I relate to all of your incredible stories.

 

Also, I was always highly intelligent, funny, talented, and gregarious. Now I don't recognize myself. As for sexual...yeah...used to be highly. Now have no sex drive at all!!! I miss it. Are you still shagging the widower LF? I hope that was funny...if it is a serious issue I apologize.

I posted a story of sheer sadness today. Anger. I am in the thick of the darn thing.

 

Flip...I long to feel as you do. I ruminate about all of my loss and sorrow daily. I long for life to be sweet. I want some of that joy you feel. Even a tenth of it! It sounds divine. Maybe at age 55, and having Bern on benzos since age 16 tocope with tragedy and PTSD will heal someday. I long to find meaning in my suffering and to find a reason to live. I am glad to hear your words. All of you. I have suffered in this life for 44 years.

 

Glad you are all here. THANK YOU

 

Marian

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Fliprain ... thank you for starting this thread ...

 

I am still waiting patiently and some days not so patiently ...  :smitten:

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Mozart, I'm sure you've had intense therapy, so I don't want to insult you by saying its a great idea,especially for PTSD issues. I do want to mention a particular method that I think can be very useful; it's called EMDR  therapy - eye movement and desensitatization reprogramming therapy. Great things are being done with this for old trauma. People are getting their lives back. I hope you will look into it.  :smitten:

 

Hi Nova Scotia

 

We will wait with you. You aren't alone.  :smitten:

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Hey, I'll be getting a reputation round here!!

 

Sorry, folks, but a few months after meeting the widower who lives 200 miles away, I became extremely ill and was numb from the waist down for a year.  Definitely not funny.  That has gone but sexual feelings/functioning still have not come back.  I am very disappointed!  :(  Widower and I are in touch every day though.  He is very kind and supportive considering we only met a few times. 

 

Glad you have a husband, Fliprain!!  :thumbsup:

 

Mozart - I think suffering makes us more understanding of others and allows us to help others.  That is the only meaning I have found.  You will be that funny, talented, gregarious, intelligent, sexy woman again.  :thumbsup:  She has just taken a break, but she will be back.

 

Hi Nova!  ;D  Hi Cooperten!  :laugh:

 

Hugs

 

LF  :smitten:

 

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Sorry to interrupt this senior meeting  :D

 

(Just kidding)  :P

 

Great thread!

 

After some weeks of good mood and feeling healing was near, I sort of relapsed and depressed again a little. I´m in one of those "will I ever heal?" days. Thanks for the encouragement.  :'(

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LF, no, definitely not funny. I  already deeply respect your attitude. You certainly are not wasting time on feeling sorry for yourself, despite still being in bed with this. I'm curious as to what your thought process is. This is the stuff that truly helps people. Tell us what you do to remain positive.  8)

 

Laudante, no such thing as an interruption here.  :hug:

 

We will endure with you as you wait out this trough. The crest will come again. It will.

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Thank you!

 

I had a very stressing and painful surgery one week ago and all that stress, pain killers, antibiotics triggered this new wave.

 

I´ve always wondered how you make that hug emoticon!  :o

 

 

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Thank you!

 

I had a very stressing and painful surgery one week ago and all that stress, pain killers, antibiotics triggered this new wave.

 

I´ve always wondered how you make that hug emoticon! :o

 

Just click 'quote' and copy it…  :smitten:

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Here's the main EMDR link, Challis.

 

http://www.emdr.com/client-stories/61-my-story--sexual-abuse-sexual-addiction-recovery-and-hope.html

 

It has been amazingly effective for PTSD in military trauma, accident, horrific loss, sexual trauma, even that hard-to-reach childhood sexual trauma. Let me be clear by saying it is a therapeutic technique and it does not replace therapy. These things still need to be processed. What it does is takes the punch out of the emotion of it once it is out in the open.

 

You, maybe more than all of us put together understand loss and horror, Challis. You are a pillar of resiliency. I hope you will feel moved to tell us your story here, but if you can't, then I understand.

:smitten:

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Hi Flip

I followed your progress while I was tapering and found it very helpful. I'm fine now. Thank you for all you do.

Bart

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Here's the main EMDR link, Challis.

 

http://www.emdr.com/client-stories/61-my-story--sexual-abuse-sexual-addiction-recovery-and-hope.html

 

It has been amazingly effective for PTSD in military trauma, accident, horrific loss, sexual trauma, even that hard-to-reach childhood sexual trauma. Let me be clear by saying it is a therapeutic technique and it does not replace therapy. These things still need to be processed. What it does is takes the punch out of the emotion of it once it is out in the open.

 

You, maybe more than all of us put together understand loss and horror, Challis. You are a pillar of resiliency. I hope you will feel moved to tell us your story here, but if you can't, then I understand.

:smitten:

 

 

 

Sure, Flippy.  Just the thought has the faucets going…too close to Mother's Day.  Let me just repost my blog entry about it instead:

 

I was prescribed Temazepam (generic for Restoril) at age 30 and it worked for the insomnia that started in my late twenties. 

 

Fast forward twenty years to age 50 (still taking Temazepam) when I saw my doctor for job stress and was prescribed .25 Xanax as needed.  I didn't question the doctor's recommendation, and still remember the instant relief taking just half a tablet...a miracle. 

 

As the years went by, the dose crept up slowly as I became tolerant.  I still didn't question it.  My sleep problems were diagnosed in a sleep study as RLS (restless legs syndrome) and I was prescribed the correct medication, so I went off the Temazepam. 

 

Enter marital problems, separation, divorce, court, attorney letters and bills (just seeing an envelope with his letterhead was stressful), mediation and a custody battle...as ugly as it gets.  Up went the Xanax dose again.  I didn't question it.

 

Extreme drama came next.  5:30 p.m. October 25, 2003.  I got a phone message that my 77 year old mother had been hurt in a home invasion robbery in the house my parents raised us, a safe and affluent neighborhood where no one locked their doors.  She'd been taken by ambulance to Stanford Hospital with injuries. I made the 200 mile drive to Stanford by 10 p.m.  I didn't recognize my mother.  She'd been beaten and choked.  Every single bone in her face was broken, her neck was broken, her ribs were broken, bleeding from mouth, nose, eyes and ears.  When I finally went home that night to her house, my family's home for 50 years, it was to find a large pool of her blood in the middle of her white living room carpet where they left her.  The police had tossed a throw rug over it.

 

I took indefinite leave of absence from my teaching job and stayed with her in ICU as much as the nurses would allow.  She became unresponsive within days.  I had to make decisions about support.  Breathing tube, then a feeding tube, drilling holes to relieve pressure in her head, watching the nurses tie her hands to the bed to keep from pulling them out, bedsores.  She was extremely agitated, especially in the wee hours of the night.  She had regularly used benzodiazepine sleeping pills.  They were already giving her Ativan and said that would cover any issues related to the use of sleeping medication.  I hope it did, but looking back, I wonder.

 

During this time, my ex-husband tried again to get custody of our daughter, though I had arranged for someone to stay with her in our home and that's where she preferred to be.  My mother's physician upped my Xanax and added Lexapro.  I found my mother's sleeping pills in her bathroom cabinet and took those until they were gone. 

 

After five weeks in a coma she developed pneumonia.  I made the decision to end life support per her written instructions.  I held her hand until her breathing stopped.

 

During her hospital stay, there was an ongoing police investigation.  TV, newspaper and radio interviews, rewards posted for information...and finally three arrests made two days after her death.  Three murder trials in the next two years required my testimony because I'd found DNA evidence in her bedroom. 

 

I cried more tears in a few years than most people cry in a lifetime.

 

I went off the Lexapro after awhile...it was rough.  I don't think I knew to taper off.  Xanax became my lifeline to sanity.  I was careful to keep some with me at all times.  I knew when my prescription needed filling and was at the pharmacy the day it was to be refilled.  I bought a fake Chapstick on eBay that hid a few days' worth of Xanax because I didn't want to keep a bottle in my purse.  I was afraid to lose even one.  I gasped if one went down the sink.  I counted them to make sure I'd make it until the next refill and breathed a sign of relief when I picked up each new refill in its orange plastic container. My physician refilled without question and without seeing me.  When I saw him for some other issue once, he said, "Xanax isn't my favorite drug.  Do you want to try something else?"  I said no because I thought it was working just fine for me and he never mentioned it again.  Anxiety and sorrow were constant companions and only Xanax kept me functioning. 

 

I retired in 2010, still on Xanax.  I worried that I was forever changed.  I couldn't think clearly and problem solving was noticeably more difficult. A lifelong reader, I had lost the ability to follow a plot.  I had bizarre dreams that didn't coincide with the events that actually happened.  I woke up every morning drenched in sweat and extremely anxious.  They were the first clue I had that the Xanax might actually be causing the problems I was still having. 

 

In 2011, a late refill prompted a meltdown at the pharmacy.  Tired of being controlled by my prescription, I decided to try to take control.  Looking back, that was a pivotal moment in my recovery.

 

I started experimenting with the Xanax to see if it was causing the problems I had.  I couldn't tell for sure,  so I began to cut my dose in August 2011.

 

Fast forward again...cutting my dose, holding, cutting, holding, quit at .25 in February 2012 on the advice of a drug counselor.  I had typical "too fast taper" w/d...BP spikes, tremor, headaches, incredible anxiety, startling at light and noise, racing heart.  I reinstated and as I taper now at a slow pace, I am feeling much better.  I am reading avidly again.  I am not anxious anymore.  I don't have bizarre dreams anymore.  My withdrawal symptoms are tolerable.

 

I will get there.  And I'll be fine.

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Hello my dear friend Flip - I've heard your call, and here I am to lend support.

 

I have just passed my 4th year anniversary of c/t from Valium/diazepam. Like you I have my old pal tinnitus hanging around with frequent "pressure" headaches that I've never had before the last 5 months or so. I have had a few hours here and there when the tinnitus shuts of completely, just like a faucet. Those are great moments!

 

There will always be a debate about which is better, a fast or slow taper, but one thing we all seem to agree upon is that c/t withdrawal is brutal and dangerous, and is not recommended for anyone. That being said, some of us who do go this route feel that we had or have no other choice. I have come through everything that the freak show of c/t w/d can offer and here I am, fully functional and present in my life!

 

Of course, support from wonderful people like you made ALL the difference in the world for me. Those nights when the sizzling buzzing running up and down my CNS, you were there to listen and let me know that I wasn't alone.  No matter what your own strugges were (and they were mighty), you have been the back bone of support here for hundreds of buddies.

 

There is another "debate" here about which is worse, physical or mental, and for me, the two are the same thing.  All the emotional, mental sxs torture was yet another personification of the very physical act of w/d itself, followed by the ongoing healing aspect, which again, is all linked to physical, chemical changes going on within our bodies.  It always makes me kind of sad when I see people debating such things, as I see it as a waste of time.  Our CNS and our brain are located in our physical bodies, and our entire body is working so hard to right itself, to heal.  To everyone who may come this way looking for words of wisdome, my contribution here is to repeat what I've often said:

 

Nothing can make this process better, easier or faster. There is no magic supplement or drug that will make your own body do its repairs more efficiently or less painful.  Your body needs to do what it needs to do to re-wire all the suppressed neurological responses that have been temporarily damaged by benzos.  There are things that can make recovery worse such as eating or drinking ingredients that rev up your system. This is something that you will find out for yourself. I was able to have small amounts of caffeine all the way through, some people cannot. I could not take any supplements whatsoever for about a year, and then I still had to be cautious about omega-3 for a little while longer.

 

Now some people will disagree and say, but I take velarian  and it helps me sleep; well, good! No one can tell you that your own personal experience is wrong. I just get sad seeing so many people desperate to find some kind of medication or supplement that will get rid of their sxs, or help them sleep and it can cost a lot of money and lead to disappointment after disappointment in their quests.  As for insomnia - I think that this is the number one fear of buddies, that they will never sleep again, even though they are assured over and over again that they will sleep normally again, maybe better than before benzos, after their bodies have healed enough and normal sleep responses are able to return.  YOU WILL SLEEP AGAIN, I PROMISE YOU!! As Flip knows, I spent well more than a year without normal sleep. In fact, I would often have days at a time with no sleep at all! I never panicked about it though; older buddies had written that sleep does return, and this made sense to me, so I waited for it.

 

One underrated feature here on BB is the search function.  When I first joined up, it was because I was able to quietly able to find out on my own what the heck was going on with me.  I would rapidly experience one freak symptom after the other, look it up on the search function, and realize, "a-ha! this is "normal" in bezo w/d!!!" There is a rich history right here on this wonderful forum where hundreds, no thousands, of people who have come before us have left their indelible words of wisdom, faith and trust for us all to read and use.  I wish more new buddies would utilize this great resource! Sometimes it's hard to get a prompt response in active posts; it may be a certain day or time of day when particular buddies are just not around. I've seen to many buddies take little to no response as a personal insult when they should never!  Just do a search and you will most likely find many, many great posts that have been written just for your situation.

 

I have been working at the same job now for nearly 2-1/2 years. When I was first here, I had just lost my job of over a decade, and I wasn't sure that I would ever be able to work again. My benzo paranoia had convinced that no one would hire me, and my dp/dr convinced me that I could never handle it even if I could get a job.  Buddies were always here to support and guide me for each excruciating job interview, and they were here celebrating with me when I finally got my full time job.  It wasn't easy in the beginning, and I feel that I only regained my full intellectual capacity within the last few months.  I have been able to completely restructure employer's work place, and he has been generous in compensations for it.  I don't know if I'll ever be as financially rewarded as I once was, but since the Great Recession, a lot of things have changed.  Which leads me to this one thing: Not everything is benzos or benzo withdrawal. 

 

Because of w/d I was able to rebuild my life in ways that are much better suited to my own spirit. I look at this whole entire thing as a chance to learn and grow within myself,and therefore, I will always call my w/d experience a gift. Every single horrifying moment and subsequent victory over those tortures; A Gift.

 

All my best wishes and hopes for every single buddie who may come this way. Hang on, your best is yet to come!

 

M.  ;D

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Wow! I am going to follow this thread, what a wonderful idea, Flip, your post about your life now is so beautiful that made me cry, thank you for sharing it!

Clona  :)

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Flip I have been with a trauma therapist for years who does EMDR and has YET TO DO IT ON ME!!! I want it. I asked him why he hasn't.  He said I was in crisis and not ready. He said we had done SOME before but I don't recall that. Yes...I have done everything else you can imagine. I know one thing...we have to go INTERNALLY for help. Juice fasting, smoothies, acupuncture, breathing, Exercise (not there yet. Used to be) meditating. These are all the things that help most. I am sick and tired of years of shrinks, meds

hospitals and therapists from which I have only gotten worse. I am tired of turning to an industry that has harmed me/us because of not knowing what else to do. Well....it is time to do the internal work. It is the only thing.

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Thanks for this thread! I'm 15 months off and in hell, I need all the hope I can get right now, I was able to do much more at 5 months off than I am now. Thanks for sticking around to help those suffering, we need more like you!!
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Bart, you have a lot to offer this thread. You, more than anyone I know, used your inner guidance and intuition to taper at a rate most thought was too slow. And look at you now...almost no symptoms during your tape and "fine" now. I'm so glad. So glad for you!  :clap:

 

Challis, I know your story and I still almost can't read it without shutting down in some way. I would be so interested in your sharing with us what it was you drew on to get out of bed day after day. What things did you think about to have hope of getting a deep breath again. What was your self talk like? There is such incredible wisdom and potential to help the rest of us with your insights. I'm glad you are here.  :smitten:

 

Miss M! its been a while. I am not surprised you're excelling at work. I DO remember those long nights. There were wee hours where BB would be like a ghost town and you and I would have lovely, insightful conversations. Im glad those days are gone, but I do honor them; they had their own particular value. Keep contributing, M. You can give people hope.  :smitten:

 

Clona - yes, please have hope. I remember once reading a post from someone who said colors were brighter one day when he opened the refrigerator and he had a sense of well-being. I was both jealous of him and desparately wanted what he had. The first day that happened to me, I thought of him and fully understood what he meant. I dearly hope I get to witness your first day of well-being. we will celebrate!!

 

Mozart, Im glad you seem to have great inner guidance and I hope soon your therapist will try EMDR. There are only so many tears to cry and then it is time to live the rest of our lives with as much awe as we can find.  :smitten:

 

OneDay, yes, you are welcome and Im sorry youre having a rough go of it lately. I wont usually be here this much, since my life is now pretty busy. It is my prayer that many others will weigh in and that this will become a mini-lifeline for a long time to come.

:smitten:

 

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I am truly blessed to have you all. We have such heartbreaking stories plus stories of triumph. So grateful for this thread.
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