Its worth the read.
My dear Benzo Buddies,
I am waiting for Connie at the Mercy Center to return to her office on March 18th to confirm a date for the summit. I assume we are looking at sometime in the summer. I will let you know as soon as I find out.
One of our blog readers is in the hospital. Please pray for Pam. It’s frustrating because the doctors are telling her she isn’t in benzo withdrawal. I did my best to educate a nurse on staff and I am calling her doctor this morning to attempt an educational phone call. I can’t tell you how deeply disturbing it is to watch the medical community practice such bad medicine due to ignorance. I drove home last night with a heavy heart. How do we reach the doctors who are prescribing these poisons and get them to stop? How do we educate the doctors who are having to deal with those coming off? It feels like a gargantuan task. But it needs to be done if others are to avoid the nightmare of benzo dependency and withdrawal.
The hospital my friend is in is the same one I stayed in for a week when Dr. Glatt, the “addiction specialist” yanked me off my 18 year use of Klonopin cold turkey. It is a wonderful feeling to know I have healed from that horrific insult to my brain.
I do have good news to share. My non-profit, Innova Gardens, is coming together. I may have a garden site soon. We will be of service to people who are recovering from trauma, loss, illness, alcohol or addiction through love, listening, education and therapeutic gardening. I am over the moon to be able to do work that nourishes my soul.
My own personal healing garden is breaking out in color. I will upload pictures and a video soon.
As soon we get dates for the summit, I want to appoint a few people, (Adam, Ruth, Michelle, etc…) to help me with details. Perhaps we can form a Summit Committee? I am so busy I don’t want to miss any details. I feel recovered enough to have a wonderful life these days, but my memory is still dicey. :)
Remember to please add Pam to your prayers. Thank you.
The athletes have left Sochi. The town returns to its normal rhythms.
But the 2014 Olympics aren’t over. Every person in benzo withdrawal is an Olympian. We are in training for the best life ever. I know that may sound a bit odd, but coping with benzo withdrawal gives you an opportunity to grow into a strong, compassionate person who knows who they are and what is important to them.
A woman in withdrawal recently emailed me (I believe it was Jenn. If that is the wrong name I hope she will reply here or email me so I can correct!) that she looked at this phase of her life as a time of training…. training to become her best, Her strongest. I loved her attitude and wanted to share it with you all.
I was so sick for so long that it was hard to see my life as anything remotely positive. Every day was a struggle to survive. I didn’t feel I was in training for anything good. But looking back I see that I was. And you are too, you just may not be able to see it or feel it.
Right now you are learning how to cope with one of the most challenging obstacles life could throw at you. You are learning what really matters the most to you. How to take care of yourself. How to let go of the things that you used to worry about, used to judge yourself and others by. If you are like so many of us who are recovered or mostly recovered, you are gaining compassion and a deeper ability to love yourself and others. (Or once healed, you can stay stuck in anger about withdrawal, which would be very sad and a waste of each precious day.)
I am grateful for benzo withdrawal. It was an opportunity to become a better me. Of course it would have been nice to have learned these lessons another way, but I am not sure there was another way for me. I was a pig-headed, stubborn, self-centered, feel-sorry-for-me person. I needed a BIG wake up call. I got one! I still have many of my old character defects, but I am more aware of them and can keep them under control. Just like I can keep my anxiety under control (or how to cope when I can’t.) I learned, after so many years struggling with anxiety created by down regulated GABA receptors., how to go about my day in a way that lessened the chances of my CNS cranking into overdrive.
I am still learning and growing from this benzo withdrawal experience. Everyday is a gift. Everyday is another opportunity to learn to love more. To be kinder. To reach out my hand to another living thing and offer help. Every day is a day to sit in wonder and look up at the heavens and say, Thank you God. Thank you.
If you are worried that you will never heal, please try to put that worry aside. You will heal. You can’t stop your body from healing. It knows what to do, trust it.
If you are worried you will never put back the pieces of your life, please put that worry aside. You will. (If you need help, I am happy to help you.)
Once the mental fog, terror, anxiety, pain, burning, tingling, fatigue etc lifts, you will find your mind is razor-sharp! You will be ready to tackle life again. And you will. In ways that might surprise and delight you.
You are in training right now to become the best you ever. God is right there with you, his arms and his heart wide open, cheering you on. Go! Go! Go!
I’m rooting for you too! We all deserve a gold medal for our stamina, courage, and blind faith. We get that medal, not as a gold circle to wear around our necks, but as a fantastic life full of what really counts.
Go team! Go!
Hello all of my benzo buddies,
I spoke to Connie at Mercy Center in Burlingame yesterday. They can host the benzo summit and provide rooms and food plus a conference room. The cost would be 130 per person a day. That’s a good deal when you include the food! Or, we can have the conference room for 60$ a day per person. Hotels in the area/plus food would be well over 130 per person I assume.
Mercy Center is an amazing place. The day I swallowed my last benzo dose and stepped out onto the high wire of a cold turkey, I walked the labyrinth there and and prayed and prayed and prayed. I heard God say, “Trust the process.” Now, two and half years later as withdrawal loses the last grips on me, I am so glad I stayed the course.
Over the past two years I have walked the labyrinth and attended Taize services the first Friday of every month at Mercy Center. I also saw a spiritual director there as well.
I can’t think of a more serene, spiritual environment to hold our First Annual Benzo Recovery Summit. I am looking at dates in the summer. We may be able to get a break on costs during their slower months if we wait till early winter.
If you think you would attend, please send me an email or comment here.
The summit will just be for us, not for doctors. I will hold that part of the summit elsewhere.
Thanks for letting me know if you are able and willing to attend. If someone wants to post this on other benzo sites, please feel free.
Hope everyone is holding on.
On a personal note: I had an amazing birthday. My benzo buddy Pam from Southern Ca. flew up and stayed with me. It was heaven. What a wonderful gift. The friends you make in benzo withdrawal are the real deal. What a wonderful benzo family we have here.
Keep the faith everyone. We do get better. Stay hopeful and positive. When you start to feel like a victim, do your best to pull yourself up and out of that place. There is nothing but unhappiness and misery in victimhood. :(
The normal outcome for withdrawal is recovery. We will all get there, in our own time. May God watch over you all.
I turn 56 in an hour.
I am hopeful that 56 will be an amazing year. There is no reason why it should not be. I am writing a new book, tieing up the loose ends to get my non-profit off the ground, and getting my recovery coaching and conulting company up and running. I also have the Benzo withdrawal summit to work on as well. A few years ago I didn’t think that I would ever work again. I didn’t think I would ever feel anything other than terror, anxiety, or pitch black depression.
All of that has lifted.
What I have left is the body stuff. It has been pretty bad the past two days. But hopefully, I will continue to get better. I have learned how to cope with it better. But it is a pain in the ass, to be honest. Actually, it’s a pain in my joints, neck, lower back, back of head, jaw, tongue, fingers, hip bones, muscles… I still have crushing fatigue too. This morning I felt like death for hours. Sitting in my garden helps, as does reaching out and helping others.
I still can’t believe that benzo withdrawal happened to me. It seems so surreal to look back on the early months first off. I was a completely different person. I was sick in every way a person can be sick. I am deeply grateful that I am past those very dark and brutal days. Very grateful indeed.
I celebrated tonight with my four children and friends. We went to a Shabu Shabu restaurant. Quite fun! One of my sons texted me when I got home, that he thought I looked the best I have looked in years and that it was good to hear me laugh. I was laughing tonight. With gusto.
After dinner we all walked to an ice cream store called Cream. They hand make ice cream sandwiches on wonderful different kids of cookies. (Very california!) I suddenly realized I was talking to my daughter in our special “baby” voice that she and I used to use when we were playful and loving. I stood behind her and put my arms around her and held her tight. For a moment, she was no longer 26, she was 6. I felt the deep love I have for her well up inside of me. I knew right then, standing in that ice cream store, that I had turned a huge corner in my recovery from benzo withdrawal.
We walked back to the car, laughing, eating our ice cream sandwiches. I hugged all of my children goodbye and drove home knowing that good things are afoot. I’ve paid my dues to the benzo beast. It’s time to be happy, joyous and free.
Maybe my body symptoms will drop off this year. That would be nice. But if they don’t and this is my life forever, I accept that. With the love I felt tonight for my children, I can face anything.
If you are sick in benzo withdrawal and wondering if you will ever be your old self again, or feel happiness, joy, creativity… the emotions that make life worth living, the answer is yes, you will. I was as sick as anyone can be in withdrawal. And I am here to tell you, it gets better. It gets way better.
Welcome 56! Let’s go do some good in the world!
Thanks to the people who called in. Appreciate your time, effort and energy. Thanks to all who wanted to call but were unable. I am grateful we have such a kind and caring “benzo family.”
I had every intention of recording the call but forgot to do so. I am sorry. Benzo brain is still a real phenomenon for me. Here is a recap of the call:
There were five people on the call with me. The callers were from Oregon, New York, San Diego, Pennsylvania and Holland (!). I didn’t ask if I could announce their names here, so I won’t reveal identities.
We heard people’s personal accounts of their benzo trauma and we listened to ideas about how to best get the word out to doctors and the public about the dangers of benzos.
The five callers agreed to share information with each other, and they agreed to each set up a time I can contact them to be held accountable as I go forward. I will be calling venues tomorrow to find the cost of a gathering space. I will also be asking local hotels for discount rates for people who are traveling to the summit.
We discussed the format of the summit, although it is still taking shape and form.
If you want to get involved, please send me an email. I will be holding another conference call in the future as we move forward.
One thing we all agree on is that the laws need to change around the prescribing of these drugs. All of us want to protect others from having to walk in our footsteps. It may take time, but hopefully we can get the FDA to regulate these drugs.
It was very nice to listen to others who are in the trenches. I hope the call wasn’t too triggering for anyone. We did discuss that possibility at the beginning of the call and urged anyone who felt too revved up to hang up. We didn’t have that happen, however.
Benzo Summit, Summer of ’14, To Infinity And Beyond!!
I realize that Don and I are beyond the place of intense suffering from withdrawal symptoms. We now blog more about the new lives we have: the gratitude and the hope we feel. That leaves some of you who are still struggling with withdrawal symptoms, without a “voice” for where you currently are in your healing.
I’ll revisit my symptoms.
When I was tapering, I became bedridden. I was too weak to stand up for very long. Taking a shower was next to impossible. I don’t have a tub, so I stank most of the time from lack of hygiene and benzo withdrawal sweating. Brushing my teeth hurt my arms too much so I often had a foul mouth. I practically shaved my head so I wouldn’t have to worry about my hair. I was too weak to prepare food. Some days I went without eating. I bought a walker that had a seat, and I used it when I managed to find the strength to go out into public. Prior to that, I used a cane, but that was not enough help as I deteriorated more and more as my dose got smaller and smaller. The weakness and fatigue were overwhelming and frightening.
During my taper and then after my cold turkey, I suffered with these symptoms (in no particular order): burning skin, formication, muscle spasms, muscle twitching, tinnitus, back of head pain, brain fizzing in skull, brain rolling around in skull, head pressure, behind my eye pain, mouth-teeth-jaw pain, burning tongue, burning spine, full body tingles that felt like bee stings, restless legs, aching, burning muscles, constipation, benzo belly, bladder problems, food sensitivities, sounds made me feel terror, anxiety, depersonalization, derealization, obsessive thoughts, mood swings, memories from life events, depression, panic, racing thoughts, racing heart, hot flashes, insomnia, tight chest, heart pain, skipped beats, trouble breathing, ear pain, neck, back and shoulder pain, bicep pain, buttocks felt like they were being pushed in and rotated with cut glass inside of them, body jerks, paranoia, hallucinations both visual and audible which resolved after a month or so after my cold turkey, trouble walking, feeling as if I was being pulled down, flashing lights in my peripheral vision, ocular migraines, feeling as if I was moving up and down when sitting or lying down, organic fear, organic terror, profuse sweating, cysts on knuckles, painful blisters on my thigh, severe joint pain, feeling unable to connect with reality or people, sobbing, dizzy, memory problems, unable to think straight, confused, exercise intolerance, all of my emotions felt too big, smells and sunlight overwhelming, Alice in wonderland syndrome, metallic taste, song in my head, looping thoughts, fear of going insane, …. and more.
I was an utter and complete mess. I prayed for death every day. Now of course, I am so grateful I didn’t die. I still have some physical symptoms, but they are manageable. I know in time, they will fade away. Bliss Johns told me that the tinnitus may never leave, but that is ok. I can live with it. That’s a small price to pay to regain my life.
Most of my troubling psychological symptoms are gone too. What is left is barely felt, and it isn’t a bother. I know it will be gone as well very soon.
If you are still suffering symptoms, please know that the usual outcome for benzo withdrawal syndrome is recovery. Your central nervous system will heal. In time.
I had many, many, days feeling utterly hopeless. I was certain that I was doomed to live in the hell of withdrawal forever. I think the hopelessness was my worst symptom.
I coped by gardening. I created a wonderful flower garden in my front yard that my whole community enjoys. I have veggies planted on the side of the house. I spent full days out in the sun, feeling crazy as a coot, but kept my hands and my mind busy and focused.
I also coped by letting go. I surrendered my life over to God as I understand God. Now mind you, I was pissed off with God a lot, (most of the time!) and let God know it. I’ve called God every curse word in the book. Thankfully, God loves me enough to overlook my anger. God knows the anger was really fear. Deep horrific fear. Fear of living, fear of dying. Fear of everything. When I let go, and let God, I still suffered, but I felt carried. I knew God was doing for me what I could not do for myself. I am deeply grateful. If you can let go of your expectations about your recovery and trust the process and trust God as you believe in God, I assure you, things will be more manageable. You may still suffer, but it will not be as intense.
I’ve come so far in my recovery. Life is wide open with possibilities now. I am so grateful. I wake every morning and ask God what s/he would like me to do for the day. I do my best to follow the guidance I am given.
If you are feeling hopeless, please know that many of us felt the same way and now we have fresh, new lives brimming with hope. We have our health back too. Even with the few remaining symptoms I have, I feel better than I did when I was in severe tolerance withdrawal waves. And I know I am only going to get better.
I know the symptoms can be almost unbearable. Find ways to distract. Find ways to comfort yourself. Accept that you are in benzo withdrawal and you are healing. Don’t look past today. Stay right here, right now. This moment is the only place where you can access God. You can’t access God in the past or in the future because neither exit right now. Be fully present in this moment.
Life is a series of ups and downs. We’ve all been down in withdrawal. Up is the only place to go! And we will all get there. One day at a time.
Before I walked off the cliff called benzo withdrawal, I was a leading authority on teen girls. I had written four books and had a wonderful coaching career.
True, I was sick in tolerance withdrawal, but I was unaware there was a singular cause to the myriad of health problems I suffered. (Now I understand that my years of ill-health were the direct result of following my doctor’s orders and swallowing a benzo every day.)
Without going into the gory, gory, gory details of my taper and cold turkey off of clonazepam, I will simply say that benzo withdrawal was hell. I was terribly mentally and physically ill. For a very long time.
(I keep promising that one day I will write my story in intimate detail, but not yet. It’s too soon. It’s still too fresh.)
Believe it or not, I am grateful I have had to walk through this valley of the shadow of death. I needed this immense lesson in how to surrender so that I became willing to turn my will and my life over to God.
I wake up every morning and commit my life, for the next 24 hours, over to God as I understand God. During the day, I pause when troubled and ask for help and guidance. For the past few months, I have been asking God what shall I do with my life, now that I am closer to healed.
I feel very led to work with people in recovery from substance abuse and benzo withdrawal, of course. I want to help them get their lives back on track. The more I focus on this path, the more it opens up for me.
I have started a recovery coaching/consulting company to help people in recovery from substance abuse and help people in benzo withdrawal. My friend and colleague, Dr. David Rusen, a psychopharmacologist, is benzo-wise and has agreed to come out of semi-retirement to help benzo patients. (Thank you David!) I am looking forward to seeing where this all goes with David on board.
If you had asked me a few years ago what I would be doing for work when recovered, I would not have said working with people in recovery. Nor would I have thought that therapeutic gardening would be a part of my toolkit, but it most definitely is!
My life has changed 180 degrees for the better. I am a much better person than I was before I started my journey into recovery from alcohol and benzos. God humbled me and I now humble myself before God. I am grateful and I am deeply fulfilled with my new work and my new life. My happiness is something that is now organic in my heart and not dependant on outside events. I am, as they say in AA, happy, joyous and free.
BTW, I understand that in withdrawal it is often very hard to feel that God is present. For me, the mere thought of God sent total terror down my spine. It took over 2 years before I was able to ponder God without a mental freak out. I was often angry at God and I wondered if s/he had grown tired of me. If you are in that stage of benzo withdrawal where you can’t feel God’s love or the thought of God terrifies you, know that those feelings will fade away.
Please keep holding on. Everyday your receptors heal a tiny bit more. Don’t quit before your miracle. I am here to tell you that life keeps getting better and better and better. God is working in my life in mysterious ways. All I can say is “Thank you God. Thank you.”
I am planning a conference call for Sunday for anyone who wants to discuss the benzo summit I want to hold his summer. Please email me and I will give you the time/call in number. If you do not have my email, please reply to this post.
I am very excited to be putting this together.
I am still sick with body sx, but the mental continues to lift, return, lift. But every time it returns it is less bothersome.
I am hopeful that one day my body will heal.
I spent the morning writing a new book, then went to the beach with a girl friend. We had a fabulous lunch then poked around in gardening and cooking stores. I had a blast. I can honestly say that I felt more continuous joy without intrusive thoughts today. First time in over three years I’ve felt this happy.
It is a shame that I (all of us!) had to suffer for so long because of a prescribed medication I took as directed. But I am grateful that every month seems to bring better days.
I intend to help doctors become educated, and help others stuck in this horrific nightmare.
Look forward to sharing my ideas and to hear yours.