Moment By Moment

Hello There!

I wrote this post on March 4th of this year. Just after I wrote it my computer crashed and died. The following month I had surgery to implant an Spinal Chord Stimulator for my arms. That went really well! I replaced my computer and then I got an amazing opportunity about 11 weeks ago. I had the new DRG stimulator from St. Jude’s installed and things are going very well. I will soon put together a post explaining the whole process with links to videos and contacts for those interested. The bottom line is this may well be the biggest breakthrough in the history of this illness. There truly is hope and I look forward to sharing the whole story with you soon. The video above is me introducing myself, discussing a little of what this blog post is about and sharing my new song. Meanwhile until I’m able to get the post ready regarding the DRG I’m finally posting the article I wrote back in March. Hope you enjoy!

Today I had my monthly medication appointment with my doctor’s office. I am so blessed I live in Boulder county where they have a wonderful volunteer service, Boulder County Care Connect, that helps me get to my out of town appointments. The driver was someone I’d ridden with before and we were having a nice chat all the way there and back. He shared something “negative” that had happened to him first thing this morning. He was looking to hear what I thought of it and how I might put my own spin on his moment. It was a moment for him where he was having a negative experience. However from his mood I could tell he didn’t let it ruin his day … it was just a moment. That got me to thinking about how intense some moments can be for those of us dealing with CRPS.

While at the doctor I had to fill out a form that asks a lot of questions about my current and recent pain levels. There is a sheet that’s always attached that lists the numbers 0 – 10 and explains what each number means. For example if my pain is an 8 out of 10 that means it’s utterly horrible. This level of pain is compared to child birth and severe migraines. Often a person living most of their time at an 8 will become depressed or suicidal. A 10 on the pain scale means the pain is unspeakable or more than you can imagine. With CRPS the patient will sometimes experience a moment of pain that is a 10 on that scale. That’s usually when we pass out from the pain and I’ve definitely been there a time or two. The McGill Pain Index considers the level of pain caused by this illness to be considerably worse than chronic back pain, having a digit severed, unprepared childbirth or non terminal cancer. At these high levels of pain my rational mind doesn’t work well, or at all sometimes. My logic is shot, reason is out the window and I easily become desperate for pain relief from this place. But since my logic isn’t working finding that relief can be a real challenge. As I’ve mentioned I have a tool box full of tools I can use in any given moment. However at this level of pain many of those tools stop working. Sometimes it seems they all stop working for a moment. When my tools stop working it can sometimes leave me grasping at straws for a solution.

So what do I do when I’m in this place? I love myself through it any way I can. Sometimes that means totally giving up and surrendering to the moment. I recognize nothing is working right now and I stop trying to fix it. I do whatever I can to find my way to acceptance. I do whatever I can and tell myself whatever I need to hear to find peace with the moment. That could mean I become an expert for a few days at distracting myself from the pain. For me if I can play my guitar that will work almost every time. But at this level of pain often I am unable play the guitar and if I do it’s not for more than a few minutes. This is a great time to ask for help. I start by asking my spirit to align me with the help I need. Word for word I might cuss a little and say with fierce meaning, I NEED HELP! Or maybe, “Please dear soul help me love myself through this, help me find a way to deal with this moment. It feels like more than I can bear.” The next and very important step is I find ways of distracting my mind. Given the opportunity my mind will spin for solutions. From this place of desperation I’ve learned I don’t always choose gentle solutions. Maybe with a good movie or TV show I can distract my mind and allow the emotion of the moment to pass. If I’m unable to play my guitar maybe I can at least sing along with one of my CDs. Sometimes having a conversation with someone I love can help. Other times I feel not to share that level of pain with anyone and I feel I cannot reach out. In a moment like that I wonder what someone else can do for me anyway. I don’t want pity and anyone who loves me will feel bad if they know I am in this much pain. If there is really nothing they can do for me I prefer to not share that with them. It may seem silly but it doesn’t feel fair to share that with them sometimes. It is important I can tell the difference between the moments I can love myself through and a moment I might want to reach out or call someone and at least say crap this sucks! The emotion that comes from feeling helpless can be completely overwhelming. I‘ve learned to love myself through that feeling of despair. If I need to take action or find a solution it‘s best done when I‘m not feeling desperate. If a distraction doesn’t work I take a nap if I can. Medication, breathing exercises, meditation, etc. There are times there is no way I could focus on meditating but just soft music in the background can calm my nerves. A bath can be really helpful sometimes even relaxing me enough I can get some rest. Rest or sleep for any length of time can make such a huge difference. Anything I can do that is loving to get through what seems unbearable is a good choice. I remind myself if I’m breathing I must be able to bear what is happening. While I’m waiting for help to arrive it’s up to me to love myself through whatever I’m feeling in the moment. What’s important and helps me really get through is when I can remind myself how temporary that moment of pain or emotion can be. I know when the pain levels are high it is easy to feel all the painful moments just run into each other becoming one never ending moment of pain. But when I take a deep breath I know the feeling of desperation and overwhelming emotion will pass. Sometimes actually taking a deep breath takes a little while. But I intend myself that direction and somehow I end up there. Sooner or later the unbearable moment will pass. The more I can feel what is happening is temporary the more I can accept the moment I’m in. Equally true: just because I’m having this moment does not mean it will continue. Yes some moments seem to last a really long time. For example it took six years to heal the open wounds on my feet. But they did heal! Six years is a long time and more than once I was sure that was how I would die. I did not die. Came close once or twice but I’m still here and the wounds healed more than six years ago now. Back then it seemed like I’d had the wounds forever and I would never know my feet without them again. Now when I look back it feels like a moment. I keep reminding myself this is temporary then off to my loving distraction. Any distraction that is helpful or loving works. Sometimes the moment last for days and I keep loving myself, keep distracting and keep reminding myself this will pass. What does not serve me is to get lost in my mind trying to figure out how to make this stop or how to make it go away. My experience has shown me that when I try and “fix” the situation from a pain level of 8 or above it is actually just a waste of my time and will likely end in frustration, possibly even landing me in a place I feel worse than I did before. Again my logic doesn’t work here so my answers are not very integrated from this place of great pain. No matter what my desperate mind may tell me to do in a blinding moment of pain I am still in charge. If I pass out the moment will pass as well. Even if this pain kills me and it probably won’t the moment passes and my spirit is free. No matter what this seemingly unbearable moment of pain is a temporary place! I take another deep breath and I remember help is on the way. No matter how long it takes to get here it is coming and it’s on the way. The moment I asked help was on the way. By asking for help I also create a path for the solution or way for relief to find me where I am. Even when I can’t reach out once I ask for help that help will find me it is only a matter of time. Now I go to loving myself through whatever I’m feeling. In truth when I am remembering the moment is temporary I’m usually ok. It’s when it hurts so bad and I start spinning with the pain in my mind that the moment seems permanent and then I’m really screwed because I can’t find my way out when I believe it won’t ever shift. So interesting how that Law of Attraction works. My beliefs can truly shape my reality! I prefer to believe all those moments of pain are temporary and fleeting. I also prefer to believe the moment of love and joy are only a breath away and really awful moments of pain can be followed up by incredible moments of joy.

There are some pain cycles that require a constant “loving myself through it,” as well as maintaining the consciousness that all the moments are temporary. Remember even the ones that run together will eventually shift. After 10 years in the wheel chair, it all felt very permanent. But I got back on my feet, I’m walking today, even dancing on occasion! Sooner or later if I can love myself through the other moments a moment of relief will come. A solution that will help to gentle up my experience will find its way to me every single time!! It is up to me to remember this and continually remind the part of me that is in so much pain. When the relief or the solution shows up now is a wonderful time for gratitude and I say to my heart and soul, “More of this!! Yes more of this please!”

I love to remember there is always a part of me that is not damaged by this experience. There is a spark of the divine that does not get lost in my pain. I can always choose to connect with that part of myself. It may not be immediate every single time but my intention to make that connection will always lead me there. I just have to be willing to love myself until I can feel that part of myself. If you’re reading this I’d like to encourage you to love yourself through whatever pain you are facing today. If you can, remember it’s only a moment, not your whole life. There is so much more here for us than just the pain. Early in self-love I created a “House of Love,” deep within my heart a very sacred space just for me and my soul. In this space of love I breathe that undamaged part of me in.  I breathe in the love that I am. I have a shelf of love in the house of love. I put everything on that shelf that is bothering me. This shelf is a place where all of my concerns can rest in the love of my spirit until a solution or resolution presents itself. What I notice is when I put something on the shelf either it disappears because when the moment is over the problem is gone or it sits in love and waits for the perfect moment to present a solution to me. If my mind is really hooked on whatever I’m placing on the shelf I use the distraction process. If it is a long term issue like CRPS or something else that may take a minute to resolve then whenever the issue surfaces in my mind I imagine that issue fell off the shelf. I pick it up and place it back on the shelf to be loved some more until I’m ready to deal with it. I may have to place it on the shelf many times before it feels resolved. But all energy seeks resolution and the moment I ask to resolve an issue the  whole universe wants to answer. If I’ll listen to my heart it will guide directly to the answer I seek. Loving myself is the best way to clear the communication channel between me and my heart and soul. There is nothing more for me to do but take my pain to The House Of Love. I lay down on cotton candy, rainbow clouds and just breathe the love that I am in. I breathe, allowing that love to comfort me and ease my pain. Sometimes the “House of Love Visualization Exercise” can be so powerful for me. It can seem at times as if the pain has become us so to speak but that feeling too is temporary. I am not my pain, it is only part of the experience I‘m having. I remember I am so much more than this pain! It also helps to have compassion for myself. Whatever emotion surfaces from the pain is also temporary. Loving me will always allow any emotion to shift!

One more thing I’d like to share before I go, when I take time to honor myself for my courage and to honor the pain itself. Often just that alone will gentle up the moment considerably. For whatever reason my soul, the universe, source or whatever has brought this moment to me. I believe spirit or life gives me the experience for the element of love and wisdom it will create. That is what my soul takes with me when I leave this place. It is truly the only thing I believe matters! It is the love we experience here that makes this life so very precious! Sometimes a moment comes just so I can learn to love myself more. Always this brings me closer to me and as I love myself it brings me more into trust with life and what life is offering and allows me to share my love with the world. I also believe there is deep honor for me from spirit for having the experience whether I do it gracefully or not. But taking a moment to honor me for my willingness to have the experience, then a moment to honor the pain for the wisdom it brings to me as well can totally shift the way I feel. It can even shift the pain sometimes and always at least it shifts my perspective of the pain and that changes everything. When I honor myself in this way I am able to get out of resistance and back into a place of allowing. Everything in my life has purpose. Every single thing that is here is serving me in some way or it would not be here. I know that is hard to swallow when you are in a moment of horrible pain. But I can choose to hate this pain and whatever allowed it and that will get me absolutely the opposite result of what I’m looking for. That type of focus will intensify the pain and make me even more miserable. What I want is relief in my moment of great pain. What I want are tools to help me keep from getting into this much pain. That is so much more important than whatever silly details my mind wants to attach to what’s happening. Everything that comes to me serves me including the pain. When I can allow what is today I am able to find a gentler way tomorrow. Fighting against it is like trying to swim upstream or walk across the bottom of the ocean floor. In truth as I continue loving myself instead of being on the bottom of the ocean, drudging through the sand it feels more like I am flowing with the river. I keep loving me no matter what and it just continues to get gentler as I go!

From open wounds and the wheel chair to healed wounds, walking, dancing and loving life! I’ve even had a successful trial of the stimulator on my arms recently! Years ago the stimulator failed on my legs but this trial made it possible for me to play my guitar every day! Talk about gentler!! I’m scheduled to have it implanted this next week. I believe that “Gentler As I Go” will just continue to be true as I love myself more each day!

I just put up the new YouTube video above where I introduce myself and chat for 10 minutes about temporary moments before I sing “A Moment In Time.” In this video if you’d like to fast forward to the music go to the last six minutes or so of the video. I look forward to sharing all about the DRG stimulator experience as soon as possible. As always I do what I can and trust the rest will work itself out. Hope you enjoy the music!

Thank you so much for taking the time to read this. I wish all of us a gentler day tomorrow with relief, love and joy at the center of our experience! Much love and peace to each of you on your journey!


Posted in Chronic Pain, CRPS/RSDS, Self Love | Tagged , , , , , , , , , , , , , , , | 2 Comments

It’s All About Loving Myself … No Matter What!!!

Hello my friends!

It’s been quite a while since I felt to put out a new post. So much has happened since I was last here. All in all I’m doing well. I’ve had a couple of surgeries that have made my daily experience a little gentler, including a gall bladder removal that has made a huge difference with my stomach! As usual the cold winter brought time for warming by the fire, resting and taking it very easy.

I have found having a tool box full of different tools to help myself during rough times is a wonderful thing. I do whatever I have to in order to love myself through the “bad” pain days and enjoy every moment I can whether it is a good day for my pain level or a rough one. The journey has become all about loving myself … no matter what!! I’ll share a little of how that came to be in this post.

The Ketamine infusion gave me about a solid year of relief from most of the pain. After a year the infusion began to wear off and soon severe pain returned. Over the next 6 months the pain slowly crept back to where it had been before the infusion. I knew I would not repeat the infusion due to a side effect around bipolar issues. While the pain relief from the Ketamine was AWESOME, I had no desire to go back on psych meds or deal with post Ketamine hallucinations. This side effect is not common from what I understand and may only occur in people who have been diagnosed with Bipolar disorder. We didn’t know this the first time around. I hallucinated for over a month following the infusion  and it took a good year or so to bring my moods back into balance. I am not in favor of using a treatment that helps the pain but throws another part of me completely out of balance. As a result I’ve decided not to seek further Ketamine treatment.

Several months after the pain resurfaced the nausea came back as well. This was followed by a period of weight loss and severe pain in my gut, as well as some of my organs, not to mention the arms, hands, legs and feet. It got pretty intense for a while. I had two significant surgeries that have corrected problems unrelated to CRPS, which have helped tremendously in bringing  a gentler experience for me.

When the pain hit full force again I found myself a bit lost as the worst of the winter 2012 approached. Even though it had only been a couple of years since I felt this level of pain, I had sort of forgotten how bad it could get. Normally I am a very calm person … I am not easily angered. But one day as I awoke again in so much pain, reeling from nausea, gagging and vomiting most of the morning, I found myself furious. I was so angry with my soul, God or whatever force out there that was allowing so much pain in my body. I don’t ever consider quitting but I was so mad that I was being asked to tolerate such a level of pain. I felt my pain was beyond reason and something outside of me was forcing me to endure it. I cursed God. I cursed every inspirational person I had been listening to. Ultimately I cursed my own soul for choosing this experience for me. I screamed “F#@#@ You for keeping me on your little yo yo: Up and down for your entertainment!! It’s not fair!!! Screw YOU!!!” Truly this was one of the worst moments I had faced in a very long time. It was dark and I felt very alone.

I spent about 24 hours just plain pissed off! I could not think of one thing that made feel better about my situation and the pain just seemed to grow. After awhile the anger began to ease and a deep sadness set in. What was I to do? I curled up on the couch and put a Sci-Fi show on my TV to try and distract myself. I laid there holding myself. I tried to find some part of my body that wasn’t in pain to focus on. No luck there as even my hair felt like it hurt.

Lately my journey had led me to believe loving myself was the answer for all that ailed me. I had been trying to love myself and in this moment I wondered how could I possibly ever really do that. If my soul chose this illness for me, how would I ever find a way to love that part of me?? How would I ever trust a part of me that would choose to bring me so much pain. As I laid there holding myself I had no answers for me. I had no positive words of encouragement and no hope of the pain passing any time soon. The pain had been getting worse and worse for months now. I was literally at the end of my rope, yet I knew as bad as this was the moment would pass. As I laid there and cried I made a promise to myself that would change the very foundation of everything in my life. I promised myself if nothing ever changed, if the pain never went away, if every day following was just like this one, I would do my best to love myself anyway. I would be the one who would be there for me when all else failed. If everything and everyone fails or abandons me, I will be there for me. I promised myself I would love me … no matter what!! Feeling some comfort in that I just held myself and cried until I finally fell asleep.

In the days and weeks that followed I searched my heart to understand what I meant when I made this promise. In my early 20’s I met a woman who told me I would never be truly free until I learned to love myself. Over the years I have tried to do that. But honestly I didn’t feel like I was very good at it. I didn’t feel I even knew how to love myself at this point in my life but I decided I was gonna give it my all. It seemed there was nothing else left to do. While I didn’t have a lot of examples of how to love myself, I did have plenty of examples of how not to love me. I started with what I knew. I would ask myself in each situation, “What’s the most loving thing I can do right now.” The more I “tried” to love myself, the more I came to understand about myself and about what love is to me.

One of the things I really noticed early on was how much negative self talk was taking place in my head. Of course the “old” natural reaction to noticing this was to start judging myself for the negativity, or to get caught up trying to turn every thought into a positive one. In order to love myself I found the best way to deal with these moments was to tell myself, “I could be gentler.” Arguing with myself, or trying to convince wounded parts of me that everything was okay would leave me feeling empty and exhausted. For me the best way to deal with my inner critic was to notice her and then get on with the business of loving myself anyway. I did not need to train my brain or convince these parts of me that they were wrong about their judgement. I began to notice when I would love myself anyway they got quieter. Eventually my self talk just began to change, it got gentler. It’s one of the great benefits of self love. It turns out so much of what I wanted to change about myself just naturally happened as I began truly loving myself. There is no force or effort required when I’m truly loving myself. If things feel forced it’s time for a deep breath. I can allow with grace and ease if I will do this.

A few months into my self love journey, I wrote a song called “Love Is The Answer.” This was a turning point in my life and in my music. I felt like it was the first time I didn’t write a song by myself. I felt deeply that my soul had participated in the creation. I began to realize my spirit communicates with me often through a song. In this song I talk about how love is the answer for each and every part of me. Today I love and accept myself exactly where I am. No part of me is ever turned away. In my heart there is a place where any and all parts of me are welcome and safe. I realize I don’t need to be perfect or better in order to allow this love. It turns out I have a soul that loves me unconditionally. I can feel this and allow it in my life today. If I will love myself through whatever comes, my spirit meets me here where I am. It is so amazing to have a moment where I connect with that part of myself and know I am heard, loved and even held when I need it. There is part of me that is not stuck in time, a part of me that is not wounded or damaged by this human experience. It’s the part of me that is a spark of God. This part of  me, my spirit, my own soul loves me deeply and unconditionally. This part of me does not judge me for my experience, instead it honors me. This part of me holds the love and wisdom of every experience I’ve ever had and will share that with me, whenever I am willing to allow. It turns out there is no separation between me and my spirit. That is just an illusion I experienced when I was pinched off from my spirit by the pain of my past. Today even in a moment of deep pain I can feel I am not alone and I never will be again!

Today when something intense comes my way, whether it is emotional or physical, I know I can love myself through it. I have learned not to take action when my emotions are high. I have learned how loving myself through a tough moment brings integration. Old wounded pieces of  me finding their way home as a result of my kindness and gentleness towards myself. It turns out I had parts of me that would sabotage my creations in the past. From their wounded state the creations were not always pretty. These pieces or aspects of me wounded in the past and not caught up to my current level of love or wisdom. I can notice when this is happening today and love myself through it. I love myself through whatever pain or emotions that surface. Once the moment passes and the integration takes place I am able to access the wisdom of that part of me. The rest of the wound just seems to fall away. I am no longer haunted by the pain of my past. I am no longer afraid of the pain I might face tomorrow. I am no longer alone!

A most valuable point of wisdom fell in when I came to understand how temporary my emotions are. I came to understand that a moment of pain is just that, a moment. Admittedly I’ve had those moments that seemed they would never end. But they always do. Sooner or later the pain passes, or eases and relief or joy creeps in. It’s inevitable my emotions change, as does the moment. Today I can love myself through the moment of pain and fully embrace the moments of relief or joy.

I have dreamed a day could come that I would hold a vibration in my body that would not support the level of pain I’ve experienced to date. While I still fully believe that potential exists, it is not my goal. Perhaps, like everything else it will happen naturally as a result of loving myself. It just doesn’t matter anymore. I will say this, my experience is getting gentler all the time! Today I make my choices based on what will be the most loving, gentle choice for me. I don’t choose based on some other person’s opinion of what’s right for me. I don’t choose based on my inner critic’s opinion. I don’t choose based on the past, or fear of the future. I always take it to my heart and choose based on that opinion.

I’ve also learned to notice the difference between my heart and my head. When I ask a question and the answer I get is long winded or in any way negative, judgmental or critical I know it is not my heart or spirit answering. My heart speaks gently and lovingly. My heart is wise and can say so much with just one or a few words. Always my spirit is clear and speaks with clarity from my heart. I know when I ask for help from this place all energies in the universe that are here for me become available. I know when I ask for help I will receive it, if I will allow it.

I came up with so many ways to “love myself through it” when things are tough. From my “house of love” exercise, to breathing exercises and all the way through to the loving distractions when nothing else is working. I am hoping to share some of this through my music and some Youtube presentations that I’ll be working on making available some time later this summer. My You Tube channel is Kimguitar42. I will post the link to my first video in this series here on wordpress when it’s ready.

Until then I wish all so much love and peace on your journey! I wish you all Self love and acceptance! I encourage each of you to do one thing to show yourself a little love today. Then just notice how that makes you feel. Maybe you’ll even try it again tomorrow??

Love and peace to you all … Kimberly

Posted in Chronic Pain, CRPS/RSDS, Self Love | Tagged , , , , , , | 4 Comments

2016 Circus O’Lection

Check out my latest songs2016 Circus O’Lection by Kimberly Wolfe

For most of the people that know me and the fact that I have CRPS or Complex Regional Pain Syndrome (previously known as RSDS – Reflex Sympathetic Dystrophy Syndrome) you’re aware that a huge part of my life is spent in pain management. I rarely have time or energy to worry about what’s going on politically. In the years since I’ve had this illness it hasn’t seemed to make a difference one way or the other to me if a Democrat or a Republican won the election. Living and coping with CRPS has taken up the majority of my focus.

Lately, even with all that’s been going on with me personally, I have noticed the circus that seems to be happening around the upcoming election. We all have our own personal opinions about what our perfect world or Utopia might look like. For a poor person who has never had an opportunity for education or employment that created true abundance, opportunities for their own business or their own home might be of most importance to them. For the businessman who wants to keep his company making money and the stock price rising to a better price his concern will be around business practices and taxes perhaps. A single mother with three teenage children could be concerned about after school programs and education beyond High School. For a disabled person like me, Social Security or health benefits might be of great concern. For someone with a chronic illness the majority of their money might go to managing their medical expenses, and for them reasonable Insurance costs or better prescription coverage might be a priority. To offer free healthcare, now that would catch my attention! A girl can dream! Basically I could go on and on each one of us has issues that are important to us and with a country this diverse and this size there are a lot of different opinions about what it would take to make this country GREAT! Whether you agree America was great once before or not, what could we do to make America great today is a question I’d like to ask. I’m not looking to get back to some place in the past where maybe a few of us remember once being happy nor to a place where some relative might have once been happy with the way things were. I want to find a new place where more of us than ever before get those opportunities to find their joy and experience fulfillment! I want to live in a country that celebrates our freedom, our differences and our commonalities!

So in response to the question “How can we make America great today?” I have this to say: we are going to disagree politically on many different points.  Every person will answer that question in a different way. We may disagree with our neighbors and business associates. We may disagree with our partners, with our husbands, wives, daughters, sisters and friends. In a time of intense energies, high emotion and fast-paced changes I believe it’s very important to pay attention to when and how we choose to act or react. Personally in my own life when I take action from fear I’m not usually happy with the outcome. Tensions are rising and it is becoming easier and easier for people to stand opposing each other, tossing insults while trying to convince each other that their opinion is the right one. In one’s righteousness it can be very easy to point your finger at the other person and say, “You are wrong!” It can be easy to dismiss another person’s opinion without taking a moment to even hear where they’re coming from. Here’s what I’ve learned from my own experience: most of the people who have these hard fast opinions and feel they are the only ones with an opinion that matters are unlikely to change their position regardless of what you or I might say. Those who are really angry about their position or their point may not to be able hear what others have to say at all.  Personally, I do not feel the need to change anyone’s opinion. I think everybody is welcome to their own opinion and each of us is welcome to express that opinion when it comes time to vote.

With that said, there’s definitely concern over how we can continue to get together and talk about what’s going on without becoming more violent and continuing to hurt each other. Will any of our issues get resolved if we don’t stop fighting with each other? Many of these political disagreements are happening between people who actually care about or love each other. In this kind of intensity it can be difficult to continue sharing our love with each other instead of sharing our frustration. How can we have discussions that will actually lead to the kind of change we really want deep within our hearts. Some would say we need to change at any cost. Some would say the change they want must happen now or all is lost! I created one or two changes that way in my own life, and let me tell you the results weren’t pretty! I would ask is there any chance we could be gentler? Is there any chance we could take a deep breath and use our wisdom to bring about the gentlest possible outcome? I would like to believe we are grown-up enough that we can disagree even on hot political issues and not have to destroy each other because of it. Is our only choice to agree or hate each other? I would like to believe there’s another option that we could disagree and still treat each other with respect, even kindness. How can this country hold debates and rallies in the time ahead if in order to have one of those rallies we have to have police in riot gear available to protect the people attending the rallies? And if those police are not safe will we need to bring in the military? That’s not a rally I’m interested in attending!

So all this chaos and intensity inspired a brilliant vision of what the next circus, I mean debate or rally, could look like … When you first arrive it would look like a circus. Inviting to one and all! In one tent they would be holding debates for those who want to talk it out. If you really enjoy expressing your opinion verbally but have no interest in physical confrontation or actually fighting with another person, this would be a lovely tent for you to spend some time in before the big rally at the end of the night. If you are interested in physical confrontation this is not the tent for you! But hang in there, not to worry, because at this circus there’s something for everyone!

In another tent they would have information available to help people who are coming to the rally understand what each of the candidates stood for and what their plans for the next four years would be if they were elected president. This tent would only be for gathering information and for providing an opportunity for those who will be voting to ask a question of each of the candidates. Lots of pamphlets and handouts expressing each of the candidates position on the issues, as well as boxes for each of the candidates that you can put your questions in. Maybe there could be some pretty music piped through the speakers while you read through the information. The questions will be addressed later on and give each of the voters a chance to let the candidates know what’s really important to them. Of course there should be food and drink for everyone, it is a circus after all. Snacks always make me happier! We could even have a tent for music and dancing although that does sound a bit Cumbia for a Clinton / Trump rally! Personally I love music and I think it has its appropriate place in almost any venue. We should definitely have a tent with some entertainment for those who just want a little distraction before the big rally at the end of the night.

Most importantly, and the game changer: on each corner of this event there would be a boxing ring available for those who are so frustrated and angry that they just have to get it out in a physical way. We don’t need police in riot gear we just need a boxing ring and a referee to allow even these people to express themselves. Give them a place to express themselves in a safe manner! Of course you would have to sign a release and be given boxing gloves, but then they could get in the ring and go to town with someone of the opposite position who feels like getting physical too. It would be very interesting to see how many of these battles ended in friendship.

At the end of the night the rally could be one just of Celebration. All of the information about the candidates’ positions was available at the information tent. All of the debates were held in the debate tent. Everybody else got their aggressions out in the ring or by cheering on their favorite opponent. Each candidate would take about 10 or 15 minutes to tell us what they love about America and what has inspired them to be our leader. Then they would each answer 20 or so of the questions from their box. All the rest of the questions would be answered on each of the candidate’s website within a reasonable period of time, where they would also provide us once again with their position on all of the issues and what they plan to do for us over the next four years. This is a job interview after all! The end of the night rally is primarily to celebrate that we are the United States of America, where we proudly embrace our commonalities and our differences!  It is our differences that make us unique. These differences add depth, character and richness to who we are as a culture. It is this beautiful diversity and our incredible spirit that can allow us to be not just great, but extraordinary! We have seen it in times of great tragedy where a community or our entire country comes together in compassion and love for those who have suffered. We have seen during these kind of difficult times that we are capable of coming up with incredible solutions for very difficult circumstances. We have seen how people from very different backgrounds and belief systems can come together and work for a common cause in celebration of life and freedom! We could all celebrate the fact that we live in a country where every four years we get to choose a different leader if we want to. That is one way we can hold the leader accountable for their promises. I want to live in a world where I can be as abundant as I’d like to be. I want to live in a world where I can be safe and where I can have opportunities to have fun and experience love. I’m betting just about everybody else at this rally would feel the same way! This is where we could create the biggest change we’ve ever seen; if we just tried to find the areas where we have common ground we might notice we have more in common than we thought. And with the areas where we still had differences and wanted a particular someone to represent us in the next 4 years, that’s where we can express our opinions by placing our vote. I think we should give trophies to all those who won their boxing matches. What a vision: Clinton and Trump supporters shaking hands after having one of the best boxing matches anyone’s ever seen? Too much?

There would be absolutely no need for attacking each other or for the candidates to go and dig around or make things up about the opposite candidate so that you elect them instead of letting that other awful person in. If instead the focus was shifted to the candidates job is to tell us who they are to tell us what they’re willing to do for us and what they stand for and what they represent. That’s it! Mudslinging would actually be considered bad form since there was an independent board that was qualified to certify a candidate before they could actually be nominated! This independent board would certify not based on party, beliefs, religion, political positions or past voting records. Certification is simply based on a guideline if you will that we lay out or qualifications that we laid out for the president of the United States. If the candidate meets those qualifications and passes a general background check, they qualify to be the president. In our normal world for a person to go around making some of the claims that a candidate will make during presidential campaign the person doing that might be setting themselves up for a serious lawsuit for defamation of character. I believe it’s almost pathetic that our political process has boiled down to the way a candidate convinces us they are right for the job is by seeing how many nasty things can they can say about the other person that’s running so that you will be terrified of electing the other person! I want to know what you’re going to do for me in order to cast my vote. It’s ridiculous that you’re going to convince me to vote for you by making me afraid of the other person! I would not mind seeing us do away with political parties altogether. I’m not sure that it serves us at all to continue this separation of America, one group of Americans fighting against the other group of Americans. Why not just have one party of Americans and anybody can apply to enter the race during the year before the election if they can pass the committee’s investigation. This could be the time when all the candidates who are interested in applying throw their hat in the ring and start letting us know what they would do for us if choose them and what their qualifications are. I’d like it to be much more like a job interview! Distracting me by telling me how awful the other person is that’s not for one minute tell me what you are going to do for me. I would love to be finished with the old three ring circus where everyone’s fighting. They’re yelling so much I can’t really make sense out of what they’re saying. I’m not sure they even know what they’re really angry about. Now the fight is getting out of hand and there is no referee!

We live in a world where we have the ability to create an environment of “virtual reality.” With a job as important and vital as the President of the United States I do not understand why we don’t begin to take advantage of this kind of technology? What if everyone who wanted to put themselves in the running for the job of President of the United States the year before the primaries or any voting would even come into play each of these people would be required to go through a course/workshop. Only those who completed the course could actually run for president when the time came. It would make a cool reality show so that those of us who will be voting later get a chance to see how our potential president might react in certain scenarios. I would propose that in this course each of the candidates would be put through a certain number of tests, even some pretend real life situations where they would be asked to make decisions that a real president would have to make. Even on Star Trek they require a person pass the “Captain’s Test” before they’ll give them command of a ship. I’d love to see a “President’s Test” as a reality show. Reality show or not if a person cannot pass a basic course on presidential responsibilities how can we possibly consider them for the position? How awesome would it be to see how a candidate would respond to a potential crisis before giving them the keys to the Oval Office? It’s the most important job in the country! We have the technology to create an election process that allows us to truly choose the best person for the job.

Even if you who are reading this found all of the rest was just silly, can you see the brilliance of how awesome it would be to see boxing rings out in front of these political events over the next little bit? People are frustrated and many are angry. Each of them has their own reasons for their position and for why they feel the change they want is necessary. If only insults and punches are thrown back and forth we will never get to the substance, the good stuff underneath the emotion, because in my own life it is only once the emotion has moved that I have the clarity of what will really bring me joy. When my emotion is running high that’s usually when I’m the least connected to what I really want. How awesome would it be if the really angry folks could duke it out right in front of every event in the boxing rings, while others cheer them on fiercely! By the time this part of the festivities was over the crowd might actually be in a good mood. Of course for any of this to work the presidential candidates themselves would have to want the events to be peaceful and without violence. They must be willing encourage their supporters to take advantage of the many opportunities that are there to help them safely express their opinions!

We live in a time of great change. Change is upon us whether we are ready or not! Will the changes be gentle? Will we love ourselves through our pain and allow our emotions to move before we react or will we share our pain with others and create more of it? Will we take a deep breath and allow a truly positive solution or will we panic and in our fear need to blow the whole thing up? The universe has a way of pushing us forward sometimes even when we think we’re not ready. Can we make a conscious choice to take that deep breath and do this in the gentlest possible way or do we need the universe to create a tragedy for us so that we can remember we are all in this together and find that compassion that makes us so special and unique as human beings??

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Ketamine Infusion is a Viable Treatment for CRPS

Hello my friends!

I hope this day finds you are having a most excellent day, and your pain is very low. Personally I am very excited about what we are getting ready to discuss, and thrilled with the beauty of the day!

As some of you may know, as recently as December, 2010 I almost starved to death. My daily nausea and vomiting reached an all time high, and I couldn’t keep anything down. Water was becoming difficult, as my throat was closing each time I tried to drink.

I managed to get hydrated at the hospital, and with the help of EMDR I began to eat a little more each day. The nausea, which has been constant 24 hours a day for two and a half years remained, and I was still vomiting on a regular basis. My weight dangerously low, and my ability to nourish myself sufficiently was being hindered by my condition.

My research had shown many people were receiving great relief from Ketamine infusions. I found a doctor in Colorado who was performing the procedure, and scheduled it as soon as I could.

On January 5, 2011 I went into the hospital for my infusion. I was kept for five days in the ICU, while being constantly infused with Ketamine.

The side effects were not too bad at all for me. I did hallucinate, and have some delusions. But the hallucinations and delusions were funny. I knew to expect this, so I just laughed my way through it. While I was being infused I had no pain from my CRPS. I had no pain in my feet, legs or organs. I also had no nausea or vomiting.

Once released from the hospital the pain in my feet returned. However it was not as bad as before. It has been more than seven months since my infusion, and the effects of the procedure are still working.

Today, I have no nausea or vomiting. I cannot begin to tell you the relief that brings me. The pain in my organs is so much better. I would estimate a 75% improvement in this area. My feet and legs are about 25% improved. My hands still have about the same amount of pain.

This is an incredible improvement to where I was in January. I have heard a second infusion is often even more successful, and am considering another infusion next year.

As for insurance issues I faced. I had a medicare replacement plan through blue cross at first. They denied the procedure calling it experimental. I talked with my insurance agent and decided to switch back to Medicare. Medicare covered the procedure without issue.

For anyone who is considering Ketamine infusion as an option, I highly recommend it. One note of warning for anyone suffering from a mental illness, such as bipolar disorder:

The hallucination and delusional period can continue even after the infusion is over. If you decide to have this procedure and suffer from mental illness, please have your psychiatrist and family keep a good eye on you for about six to eight weeks. Know that the temporary side effect will likely be well worth it. For those of us who are challenged with this disease pain relief is priceless. Many are suffering, and at the end of their rope. I am here to tell you there is hope.

In the fourteen years I have had this disease, I have had countless procedures, and several surgeries. This was the least invasive and the most effective thing I have done in all of that time.

I would also like to talk more about EMDR, which has been a terrific tool for me, and may represent a possible way to remission. However, I will do another post soon on that subject by itself.

Overall, I believe Ketamine infusion to potentially be a huge success in treating this disease. I welcome your questions and comments, so please feel free to contact me.

Thank you for taking the time to read this post, and I wish you all a pain free day.

Much love and peace to each of you on this journey,

Posted in Chronic Pain, CRPS/RSDS | 29 Comments

Is There a Connection Between CRPS and PTSD?

Hello my friends …

Anyone seen the moon lately … such beauty … and the stars too! Was that just for me, or did some of you see and feel that too?? I am counting my blessings tonight …. my pups … my family … my friends … and a journey that never gets boring!

Before I begin this latest discussion … for anyone interested, this is the link to my latest song … from a moment of great pain, a moment of deep love!

Tonight … I ponder the question of PTSD: Its similarity, and possible relationship to CRPS. I hope my thoughts are expressed, well enough to inspire some conversation on this issue. As always, I welcome your thoughts and comments.

For those of you who do not know, long before my fall, long before CRPS … I have lived most of my life with severe PTSD from my childhood, compounded by every heartbreak and emotional trauma, since. Recently, I had an incident that led me to return to counseling. I knew I was suffering from PTSD again. The details of why are much less important to this discussion, then the result … My  PTSD was triggered, and I wanted to deal with it,  before it caused more damage. I know too well the price of burying my pain.

So, I am sitting with my new psychologist, discussing my disease, and the challenge before me. It was only our second visit. I found this woman to be very compassionate, and I was happy to be processing some of the pain. I tried to describe my disease to her. I started explaining how the sympathetic nervous system gets stuck on. I explained it was as though the injury were occurring over and over again, each time getting worse.

What she said to me, in response to my description, may well lead to me finding a way to put my CRPS into remission? I have much research to do, and my progress is dictated by my daily experience. She began to describe PTSD to me in a way I had never heard it explained. She told me about the autonomic nervous system … and told me a story about the “fight or flight” state the sympathetic nervous system goes into when we are in danger, or traumatized emotionally.

She said, “When the bull is chasing you, and you are running and need to jump the fence to survive, one you would not normally be able to jump, your sympathetic nervous system turns on. In this state the sympathetic system releases adrenalin and other chemicals into your body, allowing you to jump the fence. Once you are over the fence, and no longer in danger … the parasympathetic system has the job of calming you down. More chemicals are released, and you calm, relax and realize you are safe.” These responses are automatic … the two parts of your autonomic system working together to keep you safe.

She went on to explain what happens when one is in a state of PTSD, post traumatic stress disorder …. If you grew up with a father who beat you every day, or two, at some point you would begin to expect it. You would be prepared, at all times, for the beating to begin. Your “fight or flight” state turning on each time you are abused, until finally it stays on, all the time. You stay ready, just in case today is the day. When this happens, the parasympathetic system stops doing its job. You don’t calm down, once the trauma is over. Instead you stay ever ready, every nerve and cell seeming to be alert, and waiting for the trauma to come.

After this counseling session, my mind was buzzing. I knew I had just been given a huge piece to the puzzle. Just weeks before this, I had been having lunch with a most compassionate doctor, who helped keep my feet attached, while I had open wounds on them for six years. She told me of her husband’s theory … He thought it might be necessary for someone to be in a traumatic emotional state, when they were injured, in order to develop CRPS/RSDS. I had spent a bit of time thinking about theory, and was very curious, already.

I thought back to the original time of my injury. Before I fell down the stairs, what was going on in my life? It did not take long to recall the depression I was in, at that time. I had been ill, and taken a leave of absence from work. My bipolar medication had become toxic, and was no longer an option for me. I was changing medications, and dealing with a “memory” from my childhood. I was in a definite state of PTSD, the day I fell!

Now, whether or not this “fight or flight” state is required to develop this disease … that is for further research, and less important to this discussion. What I wish to point out is the state of the nervous system, in both cases.


The wikipedia defininition PTSD is:

Posttraumatic stress disorder (also known as post-traumatic stress disorder or PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma.[1][2][3] This event may involve the threat of death to oneself or to someone else, or to one’s own or someone else’s physical, sexual, or psychological integrity,[1] overwhelming the individual’s ability to cope. As an effect of psychological trauma, PTSD is less frequent and more enduring than the more commonly seen acute stress response.


As many of us are aware, you can develop this condition by experiencing a major trauma, such as almost dying in an earthquake … or there is the example of a child who was yelled at, and hated every day of their childhood. This child will, more often than not, grow up to be an adult who is stuck in the “fight or flight” state. The nervous system overreacting to each little emotional stimuli. In the last example, someone slightly raising their voice might trigger this person’s PTSD. The ability to function “normally” seeming to be out of their reach.

This dysfunction is not the fault of the soul existing within this person! But instead, in my opinion, the “abnormality” is a function of the machine the soul is inhabiting. The sympathetic nervous system stuck on, and the parasympathetic system failing to do its job. My machine is malfunctioning, but there is nothing wrong with my spirit. Who I am is completely intact.

I truly believe the soul is whole and complete. This machine is temporary, and if I am able to connect with my spirit, more acurately see my spirit, while in the machine … I can effect the machine. I am always connected, as my counselor reminded me. But as a function of the machine, there are times when my “vision” is cloudy, and I am unable to see, or feel the connection. When I can see my spirit, feel it … truly connect to it, I have no idea what I am capable of … only, maybe, everything?

Think about it, the most powerful computer, hooked up to the spirit … which is in its perfect state … complete and whole! I could heal this incurable disease, and it would look, to some, like I had performed some magic trick. But the power of the brain, combined with the power of the spirit, makes us most powerful beings. I have yet to tap my abilities, I am just a baby … watch me grow!

A  person with PTSD, relives their particular nightmare over and over again. Each time something happens that reminds them of the original injury, the old injury is triggered, added to the tally, and the pain multiplied. Each emotional injury compounds the condition. Many become completely debilitated by PTSD. Perhaps at age 18 the abused child just has some anxiety, and small difficulties in their relationships. Without releasing and healing the original trauma, at 30 this person might have difficult holding a job, or maybe they can’t even leave their house for fear of the anxiety crushing and killing them. Now, instead of a beating being required to bring on the feeling of horrible trauma, it only takes a look, or unkind word to trigger the same reaction in the body, and or emotions. Eventually, untreated this person may become very ill, or suicidal. The imbalance now consuming their life, and certainly limiting their quality of life.

If I tried, I couldn’t describe my physical condition any better, than the above description of PTSD. My original injury is triggered, by temperature, a touch, a feeling, a sudden rush of blood to that area … anything could be the trigger. Once triggered, now every sensation is more difficult to handle. As this happens over and over, again … my body is reacting stronger with each invasion. I become over sensitized to every little trigger. I become less tolerant each time I re-experience the trauma. Trauma compacting on trauma. Without treatment, in a physical sense I believe progression can, and often will lead to autonomic system failure, of some sort. This discussion, of a possible fourth stage of this illness is for a later date.

For now, lets focus on the similarities between the physical state of the autonomic nervous system with CRPS, and the emotional state of the autonomic nervous system with PTSD. If I am right about this connection, this could be amazing news for those of us suffering with the physical manifestation of this nervous system condition, CRPS.

The good news … they can treat PTSD. When the sympathetic system is turned on, so many chemicals are rushing through your system. Adrenalin, cortisol, and many other chemicals. Since the parasympathetic system is not creating the other chemicals you need to balance, they can prescribe something to help you bring your chemicals back where they should be.

Often PTSD is treated with medication to bring the chemicals back into balance, and psychotherapy to retrain the brain. By that I mean to convince the brain the trauma is not happening today … to recognize to past is the past, to let go of whatever expectation we had of what our future should have become, and learn to live in the present moment. Often, this type of treatment is successful in putting PTSD into remission. The patient stops reliving the trauma over and over, they heal. They move past the trauma, and begin living in the present. Get beat, or raped again … it is likely to return. But … if you can effect it once, you can do it again.

There are other techniques for treating PTSD, such as Rapid Eye Movement therapy, for example. I just checked out a sight where they are researching a technique called REAMP … Rapid Eye Movement Acupressure. This site does a great job of explaining the physical connection in the autonomic nervous system, with PTSD … if you wish to check it out, this is the link:

I believe CRPS may be the same as PTSD, a physical manifestation of the same condition? I keep reliving the trauma of falling down the stairs … over and over again. Each time, it hurts a little more. Soon it begins effecting more than just my foot, the original injured part of the body. Slowly, it spreads through the nervous system.

Sometimes it spreads through another injury, such as surgery on my stomach. Each time I relive the surgery, it gets more difficult to recover. Sometimes maybe it moves due to a minor irritation … perhaps even sometimes the irritation is so minor we don’t notice at the time. Remember, with PTSD, you can develop the condition from a series of more minor traumas, or something major.

In my case, I am convinced my CRPS is a physical manifestation of my PTSD. Which leads me to this conclusion … They can treat PTSD … I can learn to treat CRPS. It may take a lot of retraining the brain to allow and engage the parasympathetic system to kick in. It may require massages every day, it may require learning more, or trying new techniques, such as hypnosis, or REAMP? I can learn everything that effects my parasympathetic system, and begin affecting the pain and the cycles, intentionally.

An example of how I can intentionally effect both systems, is through my breath. Breathing effects both the parasympathetic and the sympathetic system. When I am able, I can use my breath … breathe intentionally … in deep and slow … hold three seconds, out slow … pause three seconds. Now … repeat. When I can do this … it blows me away but my pain decreases. This is very difficult to maintain when the pain is increasing, and the chemicals are making it nearly impossible to think straight.A function of the machine, I’m afraid.

What if, I could train myself to breathe this way all the time. What if I practiced so much, breathing this way became normal, and automatic for me. Then when the pain came, kicking the parasympathetic system in would happen automatically. Shallow breathing has been a technique of mine for so many years, it may take just a bit to retrain the brain. However, knowing this is possible is one more reason to hope.

There are probably a million things that will effect the parasympathetic system like this. I believe you can trigger it, and cause the relaxing, healing chemicals to release in the brain, and directly effect your pain. I have done this through massage, meditation, driving in the mountains, laughter, dancing, listening to beautiful music, walking through mother nature, sharing a moment of love with a stranger, friend or family member, playing my guitar, staring at the moon and the stars, doing Reiki on myself, getting a hug, cuddling with my pups … There are so many things I could mention, that I have noticed make a difference. I noticed a drop in my pain, I felt a chemical release in my brain. I felt my body relax just a bit, and so did the pain.

Most of these tools I found through my own experiments, and curiosity. Many of my experiments inspired by creative thoughts, and knowledge shared with others. The fact is … we can effect the parasympathetic system, which in effect … has an affect on the sympathetic system. I believe we can re-train our autonomic nervous system to begin responding “normally,” again.

I want to do much more research on the similarities between these two disorders. One is definitely treatable, which makes me very curious that the other may be just as treatable. Understanding is all we are lacking. The more of us who are willing to share our experiences, the better chance we have of finding a true solution.

I have another theory …. most of us today, are walking around in a state of PTSD, on one level or another. We live in such a chaotic time. Each day, we experience trauma on some level. Someone yells at you, cuts you  off on the road. Someone steals from you, or cheats you. Someone’s sister just died. Someone’s mother unable to function, dying in pain. Someone’s child kidnapped, raped or tortured. Our neighbor’s house burned down, and they lost everything. Our spouse just lost their job, after 33 years of service … how will they make their next house payment. Someone’s homeless, and unable to provide food for their children. Someone’s child just told their parent, they hate them and never want to see them again, or the other way around. Someone’s just been diagnosed with stage 4 cancer. Someone’s child, or spouse just murdered. Someone’s husband or wife, just walked off, and left their spouse to support and raise their three children. Someone’s entire family died in a flood, now they feel completely alone. Someone flew a plane into the twin towers. Someone shot up the cafeteria, at the local highschool. Someone’s son just gave his life … for what … oil, war, politics … we’re not sure, but he’s gone … and the grief in insurmountable.

All of this, and so much more, we face every day. This is the world we live in. It is difficult to process the chaos as it happens. Many of us … myself, specifically, just keep adding trauma to trauma. Never stopping to release the trauma as it happens, and holding every memory and reaction in  my cells. I believe this is the energy that makes me so sick, and out of balance. I can learn to release the “negative” energy, instead of holding it in my cells. I actually prefer to see it as excess, unneeded energy, as opposed to good or bad.

I even believe I can convince my cells to release the energy of the past they are holding. I can train my parasympathetic system to start engaging again. I can heal, and find remission. Okay … so it’s a theory. I will find out, as I am experimenting every single day. I will let you know how it goes.

My latest visual consists of …. pulling the energy up from the earth, and down from the sun … through my body … the energy colliding and exploding in my heart … surrounding me in a purple, healing bubble of love. Next … I call on the power of my anscestors … all who have come before me, who have chosen to walk in love. I call on the power of every spirit from every direction … North, South, East and West … every spirit choosing to walk in love … I ask them to join me in this healing. I speak to the cells of my body … “Mind, body and spirit of my heart (my kidneys, my abdomen, my lungs, my feet, my legs … whatever I am working on, at the time.) … I love you! I am so sorry for the pain you have endured! I am sorry for every time I neglected you, or added to your pain. I will not leave you alone! We can heal ourselves! Release the past … Choose life … choose love … choose to heal, and join me in the venture of love … do it now … do a good job … vibrate faster!” I then focus on a visual of rainbow lights swirling around my heart … every cell doused in the purple flame of Reiki, doused in LOVE.

I imagine these rainbow lights gathering all of the excess energy left behind, by the trauma, transforming this energy into love and light. These rainbow lights travel around my body, transforming and collecting all of the excess, unneeded energy. Then I imagine these rainbow lights leaving me … flowing back through the universe to the person I believed caused me harm, or the person I believe I caused harm to.

To the cells … trauma is trauma. Doesn’t matter if I remember the incident correctly or not. It is likely I do not, as my memories are so tainted by my perspective, and previous experiences. My cells are holding what happened, as well as what my mind believes happened. I must release this energy from my mind, my body and my heart. It no longer belongs, and no longer serves me. The details are not nearly as important as I once believed. I must release … no matter how much it hurt, or how unacceptable I thought the event was. I need to release what I believe, as well as what cells know. The price for holding the trauma in my cells, it just too high. I needed to be alert, and ever ready, at one time in my life. But today, this is not helpful. I believe I may even be able to train this brain to relax in the midst of chaos. But … that is an experiment for later.

I am hopeful, this post will inspire further conversation. This is a very complex train of thought … but there may very well be some little gems here that will help us solve the big equation we are faced with. How do we live with the pain, how do we heal? What causes such imbalance, and how can we correct it? Life is a journey, a process, and a puzzle. Let’s work together for healing, love and peace!

For those living every day with intolerable pain … I am so sorry your journey is so difficult. You are not alone! You are at your core … in your spirit … whole and complete! Connect to that … fill your heart with joy and love … and who knows what is possible in this machine we call our body?

Love and peace to each of you on this journey!!!

Posted in Chronic Pain, CRPS/RSDS | 12 Comments

Is Medical Marijuana Really Medicine?

Hello my friends! I was just reading one of the comments, and have decided to address the issue of medical marijuana as actual medicine. I would like to begin by sharing how I found out for myself this could truly be used for pain medication.

When my brother came to live with me two and a half years ago, I was prescribed 520 mg of methadone and 32 mg of dilaudid, each day. I would get an infection in the open wounds on my feet at least every four to six weeks.  During these “pain cycles,” I would take all of the medication that had been prescribed to me. Too often, it was not enough. I would get in so much pain, I would have difficulty breathing. I would feel like I was going to lose my mind if the pain increased any further. Of course, it always got worse! My brother was with me on this particular day. I was crying in my wheel chair. There was nothing else I could think to do. I had gotten my medical marijuana prescription many years ago, and had been smoking for relief since. I would load my pipe and smoke it until I felt a little high in my head. It helped relax me, and helped me cope with the pain. On this day, I had already taken my dose of methadone and dilaudid. I had smoked my pipe, and I am sitting there crying, tears rolling down my face, when my brother hands me a joint. He says, “Smoke the whole thing!” I took a couple of hits, got relaxed and stopped smoking. He tapped me on the shoulder and said, “No, I said smoke the WHOLE thing!!!” When I got a little over two-thirds of the way through, a funny thing happened …… I stopped crying, started breathing. even laughed at a joke my brother made … and by some miracle felt actual pain relief. After years of smoking my pipe and receiving minimal relief, I began to think this might be true pain medicine. It worked when 520 mg of methadone didn’t!

After this experience, I tried smoking a joint instead of taking a dose of my dilaudid. I realized it was possible, I could take a lot less of the opiate medication, if I increased my cannibas intake. The problem I faced was how expensive it is. I believe for those of us in this much pain who use marijuana as our medication, the only feasible way to provide what we need may be to grow it ourselves. This is at least until the insurance companies, and doctors start seeing it as medication.

Frequently when I would go to the dispensary to purchase medication, I would try one of their new edibles. I was very blessed to find a large dispensary in Santa Rosa, CA that had delicious food with cannibas in it. The edibles always helped with my pain, however with their prices, I could not afford, at the time to use the edibles as part of my daily routine.

When I purchased medicine at the dispensary I would keep track of the type of medicine I used and what it helped with. Every time I bought a new strain I would write down the results in a book. I found some strains were really good for nausea, while others were helpful with muscle pain. Some increased my appetite, while others helped me sleep. I found there was almost always one that would help with whatever symptom I was having, not the least of which was help with my anxiety and pain.

On one trip to the dispensary, I purchased a new balm they were selling. I took it home, and when the nerve in my right foot turned on, and would not shut off, I rubbed balm all over the area where the nerve was hurting. I was shocked, and amazed 15 minutes later when the nerve relaxed and stopped hurting completely!! I now knew, for the first time in nearly twelve years, I could actually get nerve pain relief. I had tried other prescription creams, pills and endless procedures prescribed by my doctor. Nothing had ever relieved the nerve pain, when it turned on like this. I was thrilled, and more determined than ever that I would take as little opiate medication as possible.

As I increased my cannibas intake, and began using the balm regularly I was more than pleased with the results. Every drop I made in the opiate medication made me feel like I was coming back to life. I felt like I was becoming smarter. I began to get some of my focus back, which made it possible to actually start managing my pain. I cannot describe what it’s like to be in so much pain, you are willing to do ANYTHING for just a little relief. Even if relief only lasts an hour, that is one hour I can breathe, think and feel something other than my pain. The problem, for me, with using opiates as a tool for my pain, they make it impossible for me to manage and cope with the pain, when the pill wears off … which is almost always before I can safely take more! Once I realized this, I knew I would drop the opiate medication as much as I possibly could. In truth, I was in so much pain, I did not believe it was possible I would ever be able to live without the opiate medication. I just thought I would see how low I could go.

About a year ago, I started baking with the oil and butter, infused with cannibas. I used to bake a lot, before my illness. I love to bake. I had not baked in over seven years. I had some friends who were growing on their own prescriptions, and I began to learn what I could, in order to start growing myself. I got a hold of some leaves, made some butter and began baking. At first, I didn’t like much of the food I cooked with the butter. It just didn’t taste all that great. I found it difficult to eat enough of the sweets to relieve my pain, significantly.

In January, of this year, I was given a considerable amount of olive oil, infused with cannibas. I started baking with the oil. I found a recipe for seven layer bars in my grandmother’s cook book. To my surprise they were absolutely delicious! I started trying other recipes. I began using the edibles every day. Honestly, at the time, I had no clue how much they were helping.

In April just after I cut my opiate medication in half, I went on vacation to visit my sister. I had been using the edibles regularly for four months. I ran out of what I had a couple of days after I got to my sister’s. An unusual cold spell, for this time of year, hit hard when I arrived. I realized I had met my pain, once again. The pain in my legs had been mostly manageable since the wounds had closed.

When my feet and legs get cold … things can get bad, if I do not find a way to warm my legs. At first, it feels like I am walking in ice buckets. As time goes on, the nerves in my feet turn on. If I don’t find a way to get warm, they will eventually go numb. But the nerve pain will continue. So … I run out of edibles. I knew they were helping, just didn’t know how much. My pain began to grow … and I knew I had to find a way to address it, or end up in a terrible pain cycle. I was blessed beyond measure when a dear friend, gave me a bag of leaves, so I could make oil to cook with. As soon as I began using the edibles again, my pain became bearable, once again. I was amazed … I knew part of the trick for managing my pain on little or no opiates would be using the edibles on a regular basis.

As I returned home, from this vacation, I entered another pain cycle. I did not know at the time my disease had progressed to my upper body. I believed the pain in my abdomen, which felt like impending death, to be caused by withdrawal. I had been aggressively tapering for about five months. I became convinced the only way to stop the pain was to detox completely.

If I am completely honest with you, and myself, I am not sure what I would have chosen if I had known the new pain was the disease, not withdrawal. Which is one reason I am glad I did not know. When I made the decision to completely eliminate my opiate medication, I was deep in a pain cycle. I was depressed. I was afraid I would die if I continued to taper. I was on 30 mg of oxycodone a day, at the time. I tried to find a treatment or detox center that would help me. No one would treat me without putting me on another opiate. As in the day when methadone was found to help heroin addicts, they have found a new drug to help those addicted to the average opiate. The latest craze in drug treatment programs is a subutex/suboxone regiment. They take you off the drug you are addicted to, as they put you on the new one. I did some research. What I found scared me. It turns out many patients described the withdrawal and detox from this new medication as being much worse than the drug they were originally addicted to. Today methadone addiction is a serious problem for many. I was concerned this might eventually be the case for this new treatment. I did not believe this new drug regiment would work for me. My big problem was my dependency on the opiates, as well as the consequence to my body for taking them so regularly.

I then tried to get help from my pain specialist. I was shocked at his unwillingness to help me rid myself of the drug he so freely prescribed, that I believed was causing my pain. Out of desperation, I turned to my family. I cannot begin to tell you what great pride and appreciation I have for them, and their willingness to help me through this.

Detoxing from the opiates was a difficult process. I was convinced the new pain in my abdomen, chest and organs was a result of withdrawal. This drove me to detox completely, after nearly twelve years of using opiates as my main tool for pain control. What a journey this was! During my detox, I experienced the highest high, and the lowest low. I got a few medications from my primary care to help with the worst of the withdrawal symptoms. I got several herbs to boost my energy, and help with the pain. I drank tea, and ate scrambled eggs, and chocolate protein shakes with cannibas oil in them. Most helpful, were the baths. I would put three tablespoons of oil in a very warm bath. I would soak my entire body for at least twenty minutes, two or three times a day, if necessary. I was amazed at my ability to deal with the pain this way. I knew without a doubt. during my detox … marijuana IS medicine.

Many who are trying to use medical marijuana for pain relief, do not know how to use it effectively as medicine. It was only through trial and error I came to the following conclusion: Ingesting the cannibas in my food is like taking an extended release medication such as methadone, ms contin or oxycontin. Smoking it, for me, is like taking an instant release medication such as vicodin, dilaudid, or oxycodone. The balms, tinctures and baths are part of my pain management regiment. I believe with further study we will find even more helpful ways to use this medication effectively.

For anyone reading this who is on a considerable amount of opiate medication, it is likely way too much to consider eliminating them at this time. For me, when I truly started using marijuana for my medication, I just added it to my tool chest. Most of us suffering with this extreme level of chronic pain need every tool we can find, as our pain is chronic. Our pain is persistent, and finds its way through every blockade we build against it. It is resilient, and seemingly so very strong. For me … my resolve to manage it is stronger!

I highly recommend anyone considering this path get themselves a prescription. The law is changing, as are the attitudes towards cannibas. As more of us use this tool, and educate those who love us, and don’t wish to see us suffer, I believe the law and the attitude of society will continue to change for the better. I met a woman on the train, while on vacation. We were chatting, and I shared a little of my story with her. She looked at me and told me she had never met anyone who actually used marijuana for medicine. She had only known those who used it to get “high.” She for the first time believed it was medicine, and offered to vote for its legalization when it hit the ballot. I believe if we will share our stories, people will learn, and have compassion. I believe most of what people are afraid of with marijuana is a result of bad information, and a lack of education. Because it is such a taboo subject, and mostly practiced in hiding, we have not learned the true nature and ability of this medicine. Also … part of the “attitude” of society, in my opinion, comes from the fact that most people smoke marijuana when using it for their pain. Many just cannot get past the fact that it has been used in this way as a “recreational” drug by so many, for so long. I can tell you without a doubt, you do not have to smoke it to get relief from it. Use it in your food, rub the balm anywhere you have pain.Take a bath in the oil. There are also tinctures and pills made from cannibas concentrate, that are very helpful. All of these are effective pain management tools. It is not a requirement to smoke it. That is a personal preference for some.

For a few, even after hearing my story, it will be difficult to see marijuana as medicine. We have been told for quite some time it is no different from any other street drug. If that is the case for you … I would challenge you to ask yourself why you still believe it is not medicine? If you would be willing to take a pain pill prescribed by your primary care doctor, what is the actual difference between taking that pill and eating some food with cannibas in it?? For starters, the pill likely takes your ability to think straight from you. If you take too many pills, it will kill you. If you have been taking the pills for a long time, and just stop taking them, it could kill you. The pills likely cause other problems in your body … such as constipation, itching, mental cloudiness, fatigue, nausea, vomiting, and so much more. The pill might give you some relief, but mostly it will numb the brain so you don’t care that it still hurts. At least, this was my experience. When the pill wears off, you will likely have to wait a bit, while suffering in pain, before it is safe to take more.

Now let’s examine what happens if you use medical marijuana instead of a pain pill. If you eat something with cannibas in it, you could get tired or hungry, depending on your tolerance and the type of medication you used to make the oil or butter. If you take too much of it, you will pass out, get some sleep and likely feel much better when you wake up. There is not one case documented where someone has died from an overdose of marijuana. If you don’t take enough of it, or skip a dose, or even stop taking it cold turkey … you will likely get a headache, and probably be irritable. If the effect wears off, you can take more, without deadly consequences. I challenge you to consider … could it be … medical marijuana is actually medicine? Can we learn to be use in effective ways to treat our pain?

I am not a doctor, and I do not have statistics to back up what I am saying, yet. That is one reason for the non-profit charity I am starting. I do intend to do the research and provide the statistics. For now … these are my opinions. Take what works for you, and leave the rest. While I do not have an MD behind my name, I have my experience … which is great. I ask you to open your heart, and your mind. Consider what you would be willing to do for your parent, spouse or child was suffering every day with debilitating pain? Would you consider it medicine then? Would you not hand your sister a joint and say, “Smoke the whole thing?”

I am working closely with others who are researching the medicinal benefits of medicinal marijuana on chronic pain. I believe we continue to find ways to use this to treat our pain. I believe those who wish to can live a life without opiates, and still get relief from their pain. I would invite others to begin a dialogue

Posted in Chronic Pain, CRPS/RSDS, Medical Marijuana | 6 Comments

A Day in the Life of CRPS ….

I have spent much of my time, the last few years, focusing on the beauty that surrounds me. Much of what I write is full of the beauty I see, and the feelings of love and joy that are inspired by such beauty. Some of you may read what I write and decide I cannot possibly know what your pain is like. It is likely you are correct, as no one can truly understand your experience. However, before you decide I could not possibly understand … please allow me to share a day from my most recent pain cycle ………………

It was the fourth day of the latest pain cycle. I had barely begun to get over the infection that followed the last cycle, when this pain cycle began. When I awoke that morning, my left calf and foot were in a complete cramp … not a muscle cramp …  more like a nerve cramp. I began to stretch my foot and try to rub it out. As I recovered from this, I got out of bed. Within moments, a wave of nausea came over me, that almost brought to my knees. I immediately took some nausea medication, made myself a cup of Won Ton broth, and smoked some medical marijuana.

Before the nausea had a chance to subside, my gut began to hurt. Right in the center is started aching … then within moments that turned to deep rotting feeling. I began to do massage on myself where the scar tissue, that is filling my gut, is trying to grow. I was hoping to relieve some of the deep pain.

At this time, my feet were not too bad. The nerves in my right foot were on … as they often are. But for some reason, since the wounds that remained for six years have healed, the pain in my feet mostly seems bearable today. Admittedly, that could change this winter, as the cold weather has been my enemy. So … as I said the nerves in my feet are on, but its okay. By mid day … my thighs began to feel like a band of creatures were crawling through my blood. This feeling drives me right out of my mind. I needed to exercise … to walk or dance. I needed to get my legs moving, so this restlessness would stop. I needed to do that, before it turned into horrible pain. But exercise,  on this day, seemed an impossible task, to me. My energy had been completely gone for a couple of days. I had nothing left. I could barely lift my feet off the ground, much less go for a walk, or do what I knew would relieve the stress.

I decided to take a hot shower, after which I rubbed a cannibas balm all over … on my neck, my gut, my entire abdominal area, my lower back, my legs and feet. This provided some relief … enough that I could breath again, for a short while.

Within about an hour, or so, I began to have the pain in my gut again. I massaged myself, took tinctures with cannibas, and other herbs in it … I smoked and tried to distract myself with tv. Somehow I got through another couple of hours before everything went to a whole new level.

First a sharp pain in the area of my left kidney … It felt like someone stabbed me with a knife. However, the knife was no ordinary knife … it had just been removed from the fire it had been sitting in for hours. It was red hot like coal. It felt like that same someone then broke off the tip and left the burning metal inside of me. This pain in my abdomen and organs is relatively new, compared to the pain in my legs. I am not yet used to it. I also detoxed completely from my opiate medication, nearly twelve weeks ago. While it was indeed a good decision, and I wouldn’t change it … the opiates were providing some pain relief. In truth … I am not able to manage this disease with opiates any longer. They make my nausea so much worse, and completely inhibit my ability to focus, and therefore manage my pain. Acceptance has been my challenge for many years. I remember … after the first couple of years in the chair, I had a period of time where I realized, if I did not learn to accept my situation, no matter how painful, I would lose my mind. I am still trying to find a way to accept this new pain.

On this day … the reality of this disease was smacking me in the face … reminding me, once again, of my mortality. I began, once again, to wonder if this would be how I would die. Would this disease finally consume me? Would I lose this fight?

By the early evening I began to feel confusion in my brain … I know I am not dying at this moment, but my body feels like it is, and I cannot make sense of it. The chemicals that are released during this cycle, as well as the ones that should be released and aren’t … lead to complete imbalance in my system. Now I am becoming depressed. I cannot help it … I know if I do not find a way to manage this … it will kill me. I begin having this conversation with myself, “I have already faced my death … more than once, with this disease. I cannot understand why my body has chosen to respond this way. I know life is hard, but this seems unreasonable to me. Surely if I feel this much pain, it should be followed by the relief of my spirit being set free. Surely, this is death … I should die, and find peace … and sweet relief from this pain? Instead, I am brought to the brink of death. Just when I am certain I am about to be set free, released from this pain, once and for all … I am given reprieve, for a moment or two … and then brought right back to that edge. I have been told I will not be given more than I can bear. It’s not true … I cannot bear this. Oh, god, if this doesn’t stop I will lose my mind. Maybe I should pray for death … ask for this to be over … to finally have true relief … not for a moment, but for eternity … never to have to feel this again …. oh, that would be so very sweet. But I cannot pray for death … I want to live. I have so much work to do. There are people I can help. Surely, there is a reason for this part of my journey, too?”

About this time … I felt the knife penetrate the right kidney. It wasn’t long before it seemed someone was stabbing me first in the left kidney, then the right, then my left ovary, then my right … oh, no … now it’s my bladder. I start having the conversation, again … “No way … this can’t be happening! It’s in my organs, this can’t be good. The nerves are on in nearly my whole body. How do I possibly survive this? I have never wanted to live more in my life than I do today. But, god … do I even have a choice? Will this disease swallow me whole? Will it take everything? There must be a way to heal?? Heal my heart, heal my body??? Oh, God please ….. I am lost ….. I do not know how I can do this.”

Desperation began to seep in, as the depression deepened. I decided I had to find a way to stop the pain from getting worse. So … I rubbed the cannibas balm all over, and got into a warm bath. It was very late by now, and I was concerned about being able to sleep. Sometimes sleep is the only way to reset the pain switch. I can start over the next day, and occasionally, the next day is so much better, than the one before. Insomnia, and pain often make it difficult to reset the switch. I was hoping the bath would relax the nerves enough to allow me to sleep. Tomorrow would be another day, and I would try again … if only I could get some sleep.

After about twenty minutes, I began to feel glorious relief … just enough to make me feel capable of going into bed, and getting some rest. As I tried to get myself out of the tub, I realized my stomach muscles were almost too sore for me to pull myself out. I almost did not get myself out. I had a very terrifying moment. I realized I needed more help than I wanted to admit, when I am in a pain cycle. I wondered how long before I could no longer care for myself, during these times. Once again, I wondered would this disease rob me of everything I want so dearly in this life. Funny enough … I had the realization the entire time … the chemicals in my brain were out of balance … and things seemed much worse than they were. This was a chemical depression. Nothing new was happening. No matter how much I tell myself, during these depressions, that it is chemical … it will pass … there is nothing terribly wrong … it will correct itself soon, I am not dying today ……. I cannot seem to make my brain buy into this theory, as my body FEELS like it is dying. This is a very similar experience to the last pain cycle … and the ones before that. Yes … this could cause my death some day, if I do not manage it. However, I was not going to die on this day … it just felt like it.

After my bath, I was so grateful for the reprieve. I went to bed, asking, praying and hoping for some relief the next day. I fell asleep, asking my cells to heal themselves … telling them to choose love and release the past. I told them how sorry I was for their pain and suffering … it is more than they should have to bear. I apologized for any neglect or pain I inflicted on them. I also told to them they could heal themselves … we could do this together … we could choose ife … we could choose love. I asked them to do it now … to do a good job and vibrate faster. I imagined the purple flame of Reiki enveloping me in a bubble. I called on the spirits of my ancestors … my grandparents, relatives and friends who have passed on … and I believe help guide me in my life. I imagined them surrounding me … all doing Reiki on me. I imagined the purple bubble that surrounded me was growing stronger. I called on the power of all directions … North, South, East and West … I imagined Reiki coming to me from all corners of the earth. I called upon the power of the elements … I imagined the fire was cleaning out everything that did not belong. I imagined the air blowing the ashes away. I imagined the water washing me clean. I imagined myself grounded to the center of the earth … the power of mother earth flowing through me, increasing the strength of my purple bubble, even more. I imagined my spirit filling with this healing energy. I imagined my heart healing, and my body following.  I asked for help … I asked my heart to heal! I fell asleep knowing tomorrow … I would wake up and do it all again! This is my journey …..


This is just one day. I spend two or three weeks at a time in a pain cycle. By the time I am half way in, I feel like I am losing my mind. This is one of the most difficult things I can imagine having to deal with. I believe I feel more pain than some … but the trick … the gift, if you will …….. I feel more joy than most too. When I get pain relief … when I have week where I am functional … where I feel human and alive … this is the most amazing feeling. I cannot describe how alive I feel … how much joy penetrates my heart … how much love penetrates my soul. I cannot tell you how much beauty I am able to see and feel during these reprieves.

I believe there is hope … I believe I can heal. The brain is the most powerful computer that exists. I can affect my experience … I can heal! I am finding out more about this disease, and myself … every day! I am convinced this is happening in my body because of an imbalance in my heart. I believe I can heal my heart … and my body will follow. My first goal is to find a way to treat and manage this disease … to truly manage the pain. My ultimate goal … is to heal my heart … reset the switch in my brain … and send this thing back into the black hole of the universe, from whence it came! I know … it is a lot to ask of my body, of my heart and my spirit. But, heck … I just got out of a wheel chair, and healed wounds that were open and infected for six years … why not??

I hope, if you are reading this, that you hear my joy … not just my pain. I only write this way about the pain, so you will know … I get it,this life is so hard! For some of us the pain never seems to go away … it becomes part of our reality. If this is true for you … I am so sorry for your pain! I believe we can heal ourselves. I also believe, in spite of your pain … you can feel the most amazing joy! I believe love can heal …. love can bring balance. When your life turns upside down … when the pain threatens to drown you …. know there is one life line … love! Seek it … feel it … and accept it. If you can … your journey will be a worthwhile one, regardless of the condition of the body. This is my deepest belief, and desire ……,….. I wish you love … I wish you peace!

Posted in CRPS/RSDS | 2 Comments