Meet Emma


Emma is a three year old black Lab mix. A dog training friend of mine is going to train her to be a service dog for me, so I can have more access to normal life. She is sweet, calm, dedicated, quiet and submissive. I have fallen in love with her. She is already a help with most of my sx. She is a good distraction for sure!

I am now forced to walk, which is a bit of a challenge when my dizziness kicks in.  I feel more confident walking with her than I do walking alone, though. I imagine the exercise is good for me, even when my muscles are hurting.

Mornings are the hardest still. It is wonderful to wake up to her sweet face and calm demeanor. Instead of ruminating over how bad I feel, I get up and feed her, and then off we go for our first walk of the day.

I could not have adopted a dog until now. I was way too sick. I am grateful that I am getting better. I have a ways to go, but one day I will cross the finish line and this will be a distant memory. I am hopeful that in another two years I can say I am back to normal. Time will tell. I am learning to let go, and let God. Learning to surrender and accept that life as I used to know it, is gone. I have a good life now, even if I am sick. I am happy that I am well enough to take care of a dog. Who knows what I will be able to do once my brain regains more receptors? Time will tell.

Thanks for meeting Emma. I am thrilled to have her in my life. I hope with her help, I will be able to travel a bit further beyond the small boundaries I live in now.

I hope everyone is hanging in there, and passing the time well. I carry you all in my heart.

emma

Energy and Stress Reduction Exercises

Two of my children are battling lyme disease. I think I have it too and that it is the reason my wd is so hard. Who knows?  I am researching lyme treatments that may help with benzo wd. I ran across these two easy exercises on Perry Field’s website, thetickslayer.com. I am doing them now to hopefully boost my energy and help me reduce stress. Let me know if you try them and how they make you feel.

A lesson From Caesar Milan

I am back in a wave. Wait, was I ever out of it? Who knows…

I stayed in bed all yesterday afternoon. Too weak, tingly, burning, pain, etc to do anything else. I watched hours of The Dog Whisperer on youtube because it reminds me to stay calm/assertive. I imagine my sx are like an unruly dog, doing its best to take control of my house/life. Not going to happen if I can help it. So I am yanking on its leash, putting my hand in its face and making that sssssshhhhhht! sound Caesar makes.

I refuse to let fear take over. And it could, so easily. Fear of never getting better. Fear of giving up. Fear of losing what little of normal life I have left. But fear is what makes dogs get aggressive and out of control. If I allow myself to become afraid, I know my sx are gonna beat up on me even more. I have to be a strong pack leader and be the boss.

That doesn’t mean pushing myself to do more than I can do, but it means accepting without catastrophizing and making myself worse. It means pushing against the limits a little to see where they really are. I know my mindset is key to recovery.

For today, I will not worry about tomorrow, I won’t worry about the things I can’t control. I will pray the serenity prayer as often as I need to: God, please grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. Today. I will be strong. I will be brave. I won’t let wd define me. I will do my best to reach out and be of service to others so that I am not wallowing in self-pity.

Today, I will do my best to be the pack leader. To show wd that I am not going to cower and let it take over. I will not allow it to become a vicious, snarling beast.

Today, I accept that I am still recovering. I am grateful I am benzo free. I am grateful for my friends and family, the roof over my head, the food in my belly. I am grateful for my garden and my sweet cat Sam.  It’s ok that I am in bed again today taking care of myself. The world won’t come to an end if I rest. I won’t worry about people judging me, or thinking that “it’s all in my head,” or that “I need to be back on medication,”…. whatever. I will stay in my truth.

Today I have everything I need: food, water, shelter, and love. Today, I give thanks for my recovery, no matter how slow it feels.

I won’t look back and cry over that I have lost. I won’t look forward and worry about what will happen next. I will stay right here, in the present moment, and know that everything is OK, because it is.

Co-bloggers?

I am far from healed. Actually, I am rethinking the word “healed.” I don’t believe we “heal” but I do think we get better. Matt’s recent setback, Colin’s permanent limp, Reggie Peart’s story…makes me think that we may always have something to remind us of this part of our journey here on Earth. Frankly I don’t believe I will ever stop tingling all over. If I do, that will be awesome. If not, I am learning to live with it.

As I continue to “get better” (even though I am in a wave at the moment) I focus on getting back to work. I have a lot of catching up to do as well as a lot of reinventing. I will still blog here, of course, but my energy will be primarily focused on earning a living once again.

Would anyone like to help me blog here? Eventually, I hope this site will be turned over to someone who wants to take it on, and then as they heal, to pass it on… and on…

I am NOT closing the site. You have been so generous with your donations I was able to pay for the site to be running for another two years. *Thank you!*

I am simply exploring how we might make better use of the site as my energy goes towards other venues. I think having more bloggers may be a good thing. What do ya’ll think?

FYI, I still talk to a few people via phone and I email everyone who reaches out. That will not change.

Please let me know what you all think and if anyone wants to help me blog, let me know.

I pray for you all every day.

Keep the faith.

Jenn

 

Closing in on 28 months out.

A few Sunday’s ago I would have been able to write that I think WD is getting farther away in my rear view mirror. But of course my taste of a bit of normalcy was  short lived. Some of my sx came back. And now, they are all back. Fuck.

I painted a canvas yesterday. A few hours into it, I began to tingle head to toe. My back muscles went into spasms. I got dizzy, weak… you know the drill. I ditched my Saturday night plans and crawled into bed. I prayed that when I woke the next day, it would be better.

Nope. Worse.

I am 3 day’s shy of 28 months out, and horribly benzo sick today. *Sigh* I tingle all over. Like tiny bee stings. My buttocks feel as if they are being crushed inward, and burnt at the same time. So many of my bones hurt I don’t want to walk. When I am sitting still, it feels as if I am on a boat and very wobbly, as if I could tip over any second. I have patches of burning skin all over. My head is full of pressure and a tight band is around my forehead. My ears are full and stuffy. My vision is blurry, watery. When cars drive by it is as if they come in frames, not a fluid motion.  My tongue tingles and burns. My eyes are dry, red and sore. My left chest wall aches, and feels if it it is being squeezed. My thigh muscles ache. My feet twitch. I am weak from just sitting up. I feel drained of all energy. I have nausea and a tight but bloated belly. Someone must have left a tea kettle on the back burner in my brain because my ears hissssssssss all the time.  My toes feel as if they are being zapped with electricity. The bottoms of my feet burn and tingle. My upper back is tight and tingly and on fire, but yet I am freezing. The back of my head hurts yet is ice-cold. My brain feel fizzy.

I am so weary of this journey to recover my health.

On the day’s when most of these sx are gone, I am hopeful. When they return with a vengeance, hope is harder to hold onto.

So, that’s my update. Back in the thick of it. It feels as if I am as sick as I was a year ago. For all of the healing I have done, it only takes one bad wave to set me way, way, way back to where it feels as if none has taken place.

I keep swimming. What else is there to do?

Matt Samet Talks About His Setback

Matt Samet, the author of Death Grip, the gripping book that recounts his experience in benzo withdrawal wrote an intense piece about his recent setback 7 years post benzos.

Matt points to bad self-care, as the cause of the setback, something we can all avoid.

I appreciate Matt’s honesty in coming forward about his decline back into withdrawal symptoms.

We all need to take good care of ourselves. Our CNS may always be a bit fragile having been so harmed by benzos.

Go here to read Matt’s story. 

If you are early in withdrawal, you may want to think twice before reading if you think it might upset you.

This last wave of sx really knocked me off my feet. Literally. I spent more hours in bed or curled on the couch than I did walking or gardening. I was sinking fast into despair, fueled by “what if thinking.” “What if I never get well.” “What if I am always in pain?” “What if I can’t work fulltime ever again?” “What if I never find a partner to love?” “What if my family gets tired of me being sick?” “What if my friends stop coming by?” You get the idea.. what if …. [insert something negative]… happens.

I’m going to do my best to switch over to “how thinking.” How can I help myself recover?” “How can I manage my pain level every day?” How can I bring in money without taxing myself too much while I am healing?” “How can I dismantle all the barriers I have to love?” How can I minimize the chance of my family getting compassion fatigue?” How can I reach out to my friends so that they want to come over?”  You get the idea.

I am slowly pulling out of the wave. I still have a laundry list of sx, but I was able to walk a few blocks today without feeling like I am having a stroke or otherwise dying. I am grateful.

I am also going to Pray, Visualize, and Actualize.

I am going to pray for my body to heal. My God is a big God. I trust God can heal me. Then I am going to visualize me working in an Innovation Garden at Yahoo, Google or Apple. Next, I will actualize that dream. I am going to think of HOW I show the high-tech firms the power of an innovation garden.

Thanks all for letting me sit on the pity pot last post. I had my pity party, now time to do my best to shift back into gratitude. I have four amazing children. I have a fabulous garden that brings me great joy. Both of my parents are still alive and helping me. I have dozens of friends who love me. They bring me food, plants to put in the garden, and even give me my contact lenses so I don’t have to buy them! I have the best cat on the planet. :)  My legs work even if they are weak. My arms and hands work. I can see. Hear. Taste. Smell. I am grateful that I can write again. (I was sooo worried I had lost that ability!) I can work a computer again. I can drive short distances. It’s not the life I was accustomed to, nor is the life I had dreamed about. But it is my life. I am grateful for what I DO have.

Ok, gotta scoot. I am off to my art studio (another thing to be grateful for!) to paint then off to drive to Half Moon Bay to interview for the chance to be accepted into the Master Gardeners class come January. I hope I get in!

Love you all so much. Thank you for walking through the shadow of the valley of death with me. Keep walking. One day, we will ALL be on the other side of this illness.

Jenn

 

 

 

WORN

Thank you Pam for sending this to me. Thanks for walking beside me all these years. I still curl up in the blanket you made for me. I love you so much. Thank you for being a friend.

Jenn

Dear Mother Of God

Guess I’ll have to pray to her, as God doesn’t seem to be listening these days. I mean really. I keep praying for healing but… the wave just keeps gets bigger and bigger. I’ve been mostly bedbound the past few days. I have a lot of sx I had in the very beginning and I have to say it is more than a little upsetting. The mental crap is better, for sure, but the body stuff is agony.

I won’t list all my sx here, as that’s just too depressing. Let’s just say that 27 months off is proving to be a bitch. I was having more good hours than bad, and thought rather smugly, that the worst was over. Never get smug in wd, that’s what I am learning now.

I read so many emails or comments from people saying they find hope here in the blog. That was my original intention. Spread hope. But today hope is hard to come by. I’ve already had a crying meltdown on the phone with my daughter. I. Just. Don’t. Want. To. Do. This. Shit. Anymore. Period. I am tired of the burning, pain, tingling, weakness, dizziness, broken sleep, nerve pain, fatigue, head pressure, memory loss, chest pain, spine pain/burning, joint pain, bone pain, stomach issues, itching skin, itching ear canals, vision disturbance, feeling like my body is being crushed, freezing, hot flashes, formication, DP and DR, feeling like I am moving when I am sitting still, twitching…..Ok, so I listed my sx… or at least some of them.

I read stories on recovery_road.org and get scared that I STIll have years ahead of me. I used to comfort myself early off, telling myself that it would only take 2 years AT THE MOST, to heal. Two years. Two years. Two years. That was my mantra. I blew past 2 years a few months ago. Now what do I tell myself? Three? Four? Five? Fifteen?

I am losing hope that we ever do heal. Sorry. But that’s the truth. I see people years ahead of me having setbacks. It isn’t reassuring. I wish we knew what was causing these sx. Why is we have many of the same sx that people with Lymes disease, MS, lupis, CFS and fibromyalgia have? What in the world is going on inside of our brains?

A friend in withdrawal just came over. Misery loves company. I am grateful for my wd friends. No one else on the planet understands this torture.

Hang in there everyone. I will too. It’s getting old, this journey. Very. Very. Very. Old.

*Sigh.*

 

 

Take Me Out To The Ball Game

Sunday I decided to go with a friend to the ballpark and watch the Giants last home game of the season. We waited a half hour for a train to go from the peninsula to the “the city.” It was a two block walk to the stadium and a hike to get to our nosebleed seats. Once seated, I was clear to me I had over estimated how much my CNS could handle.

It’s hard to do even the most normal of tasks when your bones hurt, muscles hurt, head is full of pressure and woozy and you feel like you have mono/flu/MS/CFS/fibromyalgia all at the same time. We only stayed for about 45 minutes thankfully. I came home and sprawled across the bed, totally exhausted. At 27 months out, I sure thought I would be more healed by now.

I remember reading a post on the old benzo withdrawal site that is now defunct about a woman who attended the zoo. She had a chunk of time off her benzo under her belt, and I thought that she must have emotional issues other than withdrawal, as she was so overwhelmed with being out in public. HA! This was before I was off the drug and felt pretty smug that getting free wouldn’t be “a big deal.” Now I know the truth.

What I am feeling now when out in places such as a noisy ballpark, or a rattling train with standing room only, isn’t anything I have experienced prior to being on the benzo I took. The sensations are clearly withdrawal induced. Hopefully as my brain heals more, these sensations will go away. That’s the hope at least.

I am concerned that the healing is taking so long. A part of me wonders if the intense stress of the cold turkey (after 18 years on the drug) gave me a form of MS? I don’t know why I still tingle all over every day. No breaks on that sx yet. Or why I am so fatigued to walk two city blocks. Or why my skin still burns, muscles still ache and go into tight knots, or why my bones throb and feel as if someone has poured acid into the marrow. It’s quite hard to realize that even after 27 months of healing, going to the ballpark was too much.

At least I can garden. For that I am deeply grateful. It is medicine for my brain and body. I am able to think clearly again and be creative. My other blogs are doing well and I am moving forward with my businesses. I am pleased about that. But I sure wish I could do more. One of the hard things about healing from the damage done by benzos is how limited our lives are. It’s the same day after day, day after day. The monotony of waiting to heal gets old very quickly.

I don’t mean to sound whiny. But deep inside, I am getting whiny. I want my life back. I want to be able to go wherever I want to go without wondering how sick I will feel. I think most of all, I want the reassurance that we actually do heal. That this crap goes away. And I would really like to know when. 30 months? 36? 42? 48?

The good news? The Giants won, 6.-7 in a tied game that went down to the wire. San Diego had hit a grand slam early in the game but we battled back and grabbed the victory. I suppose that is what we are all doing in this fight for our health. We are battling back against a benzo that looked like it was going to win, but ultimately, it will not.

Keep swinging.