In life we are blessed, for better or worse with family. And then there is chosen family. Those amazing people in our lives that start out as friends, quickly move to best friends and eventually become family. The people that we would not ever want to live with out. Today I want to talk about one of my oldest and dearest friends who is my chosen sister. Sharene. We met almost 30 years ago at a tiny little neighborhood park in Hollywood and have been thick as thieves ever since. Even when we lost touch for a little bit we would eventually find each other and it would be like no time had passed. Sharene is my grounding. Even at the height of my crazy years which lasted way past my teens she has been there to keep me from going too crazy. And when I didn’t listen so well, and had to learn the hard way, she has loved me and been there for me anyway. She has picked me up off the floor more times than I can count. Her influence has not always been saintly. But even in corrupting me she has protected me. She gave me my first drink but never let me have too much. She exposed me to the joys of cutting class from time to time but always encouraged me to do my best. We stayed out late, but she made sure we were always safe. We learned about boys and love and sex but were never too far apart. We smoked and laughed together on my living room floor and I always knew we were OK because she was right there with me. We have seen each other through two kids a piece and all of the ups and downs and tears of fear and joy that come with it. We are Godmother to each others children and love them all with all of our crazy Mama Bear hearts.

Sharene is the most amazing bad ass warrior women I have ever had the honor of knowing. She has lived through, nay, fiercely fought through, abuse, drama, heartache and pain that no normal human would have been able to endure. She has kicked cancer’s ass with extreme prejudice. Been dealt the worst aftermath and side effects of cancer treatment I have ever heard of and continues to fight like the beautiful strong goddess that she is. She has been there to lend and ear and give advice even when she felt horrible. She has never pushed me away or told me not now. She always tells it like she sees it. No sugar coating or telling me what I wanna hear and for that I am eternally grateful. I love this women so much. I could never do enough to repay her for all of her love, tough or otherwise. There are not enough words to say thank you for all that she has done for me. Including taking me and my boys, and all our pets in when we found ourselves with out a home for a little while.

We have not always seen totally eye to eye. And we defiantly have different tastes in just about everything except David Bowie but that is what has made our friendship so wonderful. We give each other different perspectives. We teach each other new things. We celebrate our diversity. We love each other unconditionally.

I look up to her. I cherish her. Even though we don’t see each other as much as I would like, as we both tend to be house bound with our respective health issues. She is in my heart and on my mind every day.

She is beauty.

She is strength.

She is Joy.

She is Goddess, Princess, and Queen.

She is a rock star!

She is my Sister forever.

Very often we hear the phrase “Give yourself permission to fail”. Well I think that’s great but what I have learned is that what I need is permission to try again. I have learned that for me, it very often takes many tries get something right, or to make a change. Not only because my memory is so bad that sometimes I don’t remember what I have done. But also because if I dont or cant do something right the first time I give up. I am learning that just because I fail once this does not mean it cant be done or its a bad idea. I just means I may have to try again…and again…and again. Hopefully making adjustments along the way so I am not just defining insanity. Having Fibromyalsia has taught me that what is impossible today may not be tomorrow. And it has also taught me that what I used to be able to do, I may not be able to the same way anymore.

It’s easy to give up. To just say, I already tried that and never do it again. Or see how someone else does something and think, if I cant do it like they do it, I cant do it at all. Someone once told me about this thing called adaptive skills. Great concept. One problem. There is no one, hard and fast manual on how to adapt. And adapting is not just about all of a sudden being totally comfortable with doing something different. Maybe some people can do that, but that is defiantly not me. I figured out with the help of an amazing therapist, that the first step, is letting go of what used to be…what I used to be able to do. That, in and of itself is not easy at all. While I was still wallowing in my past there was no way I can even try to figure out any other way to do anything. Once I figured out that I needed to stop looking back, the problem became, now I have to figure out how to do things and who I am now. Its not just, “ ok I’m gonna do it this way now”. Its basically learning how to do something all over again. Moreover I am becoming a different person with a completely different way of thinking and problem solving. So its kinda nuts to think that its gonna go all perfect the first time.

All of that doesn’t even begin to cover the fear. So much fear. Having to change how you do the most fundamental of things can really play havoc with your self worth. What if I don’t do it right? What if I embarrass myself? What are people going to think of me? Are they going to judge me? It’s terrifying!

I talk myself out of things again and again. No matter how good my idea might be. No matter how much I need to do something. Fear will stop me in my tracks and make me rethink everything. I will talk myself out of even the things I want to do the most. I will sit paralyzed for hours afraid to even confront that thing that I need or want to do. What if I do it wrong? What if by doing it wrong I hurt someone I love? But then by not doing it am I hurting someone. Which I think about long before I worry about what this is doing to me.

All of those things pile up squarely on my shoulders. All of which, I put there.

Overwhelmed, weighed down, paralyzed, terrified. The only way out is a path I have to travel alone. Ok maybe not completely alone. I have this amazing therapist that most of the time just feels like this really cool friend that listens to me bitch and tells me its ok to feel the way I do. It’s funny how my friends and family can tell me all day long that I am doing ok and it takes a perfect stranger to make me believe it, but with out those friends and family non of this would mean anything.

So, permission to fail, permission to try again, believing those friends and family that they are strong enough to take it if I accidentally hurt them. All boils down to one thing for me.

Most people would say that it’s courage. And yes that is what other people call it. But like everything else what other people see isn’t exactly right for me. The word for me is something more like… Fuck it. Yup. Fuck it.

I have to invoke the rebellion with in me. The defiant, Stubborn, women that can just say Fuck it. Imma do it anyway. I kinda gotta get mad. Get mad at me in the most positive way possible. Does that make sense? Probably not completely. Which means its perfect for me.

Fuck it. I am going to stumble and fall. I am going to look like I have no idea what I am doing from time to time and some times I wont. But I will learn from it and I will get better the next time I try. So Fuck it.

Sometimes I am going to break down and cry and want to give up and I am going to wallow for a while. Fuck it

I am going to forget stuff. I am going to forget why it didn’t work the first time and I am going to do the same thing again. I have people that love me in my life that will be there for me to gently remind me and help me find another way or just cheer me on. So Fuck it.

I still want to live. I still want to see my friends and go places It is going to be a little more difficult to do some things because my body doesn’t work the way it used to. Fuck it.

Each time I say Fuck it I am going to get stronger and do more and be happier in the body I have now.

And anytime anyone wants to say Fuck it with me I will be more than happy to shout it to the world with you.

I am what I am. Right her right now. I am not what I used to be. I am not my mistakes. I am not my disabilities. I am the ever changing, ever evolving me. And I am going to try and try again as many times as I need to.

Fuck it.

 

The first two people I would like to talk about are the two closest people to me in the whole world. My partner Joe and my oldest son Jason. These two amazing men make my life better every day. The list of ways they help me is miles long.

Joe has stuck with me through 6 years of the roller-coaster that is my life. With patience and tolerance that can only be described as saintly, this man has fed me in bed more times than I can count. He has indulged late night cravings, run unending errands, ferried kids to school and band events all over creation, indulged me in all sorts of crazy ideas, jumped on board with my life long dream, insisted that I take my meds and eat well, rubbed and massaged sore muscles so much it has permanently effected his hands. He has cried with me, held me, made sure I fell asleep, Cried with relief when I do finally sleep. He has defended me, and educated others about my condition. I cannot say enough about all of the amazing ways that Joe makes my life better and easier.

On our third date, I sat him down and set all the cards on the table for him. I told him all about my health conditions and what it means to be with me. He did not flinch. He has never seen my conditions as me. He sees me when I cant. No matter how sick I am, how messy my hair or how much weight I gain he loves me and thinks I am beautiful. And to top it all of, he has this amazing family that has accepted me and has gone out of their way to help me as well. In ways I have not even been able to process completely yet. I am so blessed and thankful to have him in my life. I don’t tell him enough. I hope that this will help him know how much I love and appreciate him.

The next person I need to honor is my oldest son Jason. Jason had a rough start to life. Born with a defect in his heart, he underwent open heart surgery at 6 weeks old. He was partially deaf until he was 4 years old when a brilliant homeopathic doctor found the problem and cured it when no other doctor could. Because of these set backs so early on he struggled with speech for many years to come. And Goddess knows I was not the best Mom. He grew up with Mom being in bed sick a lot. Having to do things for himself much earlier than a child should have to. He struggled with many things and through it all he has always had the sweetest, softest, most loving disposition I have ever seen in a child.

Now that he is grown up, and has a good job he could have easily left the nest and distanced himself from me but my dear sweet child has done the exact opposite.

He is here, at home, making his family and me a priority. I can not say enough about this sweet young man who I am honored to call son. He calls me every day from work to say hi and check up on me. He has kicked in money for food. He has taken Joe and I out to movies when we didn’t have the money to go, many times. He comes into my room when I am stuck in bed and talks to me and hangs out with me. He has brought me food in bed just as much as Joe has. We have shows on TV that we only watch when we are together, which he will come home from a hard day at work and still take the time to watch with me. He cooks and helps clean. Listens when I cry and when I complain. Through heartache and trials of his own he has been there for me. He has never been embarrassed of me. He has never pushed me away when I wanted to be there for him. He takes me out to eat just because and has used his money for things often when I have given him my card to pay. He fills my van up with gas, loads my wheelchair onto the van. The list goes on and on. I am so proud of him and so blessed to have him in my life. I want the world to know how special and wonderful he is so this is my way of shouting it from the rooftops.

 

I post a lot about how hard fibro is. From articles to comics to memes. It’s all over the internet, how often people with fibro and other “invisible conditions ” are miss understood and judged unfairly. I do this because it needs to be done.
But…what I don’t see a lot of is talk about the amazing support people we DO have in our lives. I feel like those people need to be celebrated much more. We need to write articles and draw comics and shout to the world about the people that are there for us every day in all sorts of different ways. Some of them struggling through there own health issues and hard times. Don’t me wrong, I do see it. Many do make it a point to thank there support people, privately and publicly. I just feel I need to do more to honor mine. And since I am limited in so many ways I can at least use the tools I still have to do so.
My support system is huge! They are the reasons I am still here. The reasons I survive.
It would be an injustice to try to squeeze them all into one post. So I have decided to split it up to one or two at a time over the next…well however long it takes. I want all of them to know, and everyone else to know, that every day they make a huge difference in my life.
I am eternally grateful for each and every one of them.
So…from here on out that will be my mission. Please come back and read about these amazing people and feel free to share with me the stories about your support people.

Art has been used for therapy for centuries. Fine motor skills honed through painting, drawing, and sculpture. Dementia treated with music. A plethora of mental and emotional maladies made better through art, music, and dance. Art can move to tears and lift to joy. We are connected to it, it surrounds us. Even those who do not poses the drive to create appreciate it in some way.

I started my business, SecondHand Goddess at a time in my life when I needed healing and didn’t know how to find it any other way. I was trapped, scared, in pain everyday. I had not practiced any form of art in almost 5 years and it was killing me. The call became deafening. The universe stepped in and gave me what I needed to get started.

What I gained was was courage. In spite of the physical and emotional pain, it was all I could think about. All I wanted to do. The forces in my life that were keeping me down did not like what I was doing. They tried to get me to stop and I couldn’t. It was that drive, that call, that kept me going to the point that the person that was holding me back, let go of me. Completely. And even though it left me with two small children and no way to take care of myself or them, I still had my art. I still had that courage, that strength. It reminded me that I could do it. That I could survive. And I did. I was a long road to recovery. I struggled and cried and fought with all my heart. The mundane world and simple survival took all my energy for a while. But that drive to create never left me. I never turned my back on it and it never let me down.

Shortly after I gave birth to my first child I was diagnosed with Fibromyalsia. Acceptance of it was not very big in those days. Not much was known about it or how to live with it. My mother had it so I knew what it looked like. I knew how it destroyed her. Put her in bed for days. She was an artist too and I remember her struggling to get out of bed. Getting out to her studio in spite of her body fighting her. I understood very quickly that it was her art that kept her going. It was her art that gave her purpose when the fibro had taken everything else away. I have held onto that strength all my life. She used to say to me “Never let anyone break your spirit.” I did not always follow that. I allowed myself to be broken and I allowed others to be hurt because I was broken. But it was always the art that pulled me back.

A few years ago I was also diagnosed with Degenerative Disk Disease. I was told that nothing could be done until it got so bad that I would need surgery. I have lost jobs. I cannot work a normal job anymore. I am in constant pain. I cannot walk for stand for more than a minute or so. The call to create is stronger then it has ever been. As my body slowly fails I am left with pure raw desire to create. To take what was discarded and give it new life. Give it beauty. Just as I have been discarded and have found beauty in what I have become. Every set back in my life has opened a new door to creativity. Every time I embraces that drive I get stronger. I learn some new way to use the gift of creativity I have been given to keep going. A little at a time I am working towards a dream. I have found others along the way that believe in the dream as much as I do. And see the beauty in the broken. Broken does not mean ugly. Broken does not mean garbage. Broken means change, evolution, metamorphosis.

I have been broken in more ways than I can count. I am still hear and putting the pieces back together in whole new ways. My art is my therapy and my hope for the future.

So when the world breaks you, when the pain, weather physical or emotional gets to be so blinding that it feels impossible to bring anything else into focus. Remember that art can save you. Art can bring in the light or dim it when its too bright. Whether you are a creator or an appreciator it has power. Remember your favorite song. The one that makes you smile or cry or both. Watch your favorite movie. Walk out side and look at the sky and the trees and let the art of nature inspire you.

Draw, paint, crochet, sew, dance, sing! Art is everywhere if we just look. Let it be your therapy. Let it be your courage and your strength.

 

To Whom it may concern,

I am writing to you in regards to my recent visit to one of your appointed doctors. Dr Richard A. Reines M.D.. I have never in my life had such a dehumanizing experience with a physician. Some may say I am fortunate in this, which in and of itself is a sad commentary, but I digress.

I went in with the understanding that the purpose of this appointment was to have a physician deny that I am unable to work. It is a forgone conclusion that just about everyone gets denied the first time they apply for disability. What I did not expect was to be blatantly treated like nothing more than a number. To have my words twisted so perversely that it didn’t even resemble what I was trying to say was shocking to say the least. To have my questions blatantly ignored, extremely frustrating. To be asked questions and not allowed to answer seemed not just rude but extremely counterproductive. A certified, licensed physician looked right at me and told me that he knew nothing about my condition. Then I was not even be allowed to fully explain that condition.

What this all leads me to believe is that sending a person to a doctor to evaluate their condition on behalf of the social security administration is a sham…a rouse. It is there just to give justification to the inevitable first rejection. And if this is not the case then the other logical conclusion is that the social security administration does not actually know how bad people are being treated. Which is also very hard to believe.

Because it was hard for me to believe at first, I did what I thought was right. I called my case worker. I told her what I had experienced. How I felt about how I had been treated. My concerns about my fate being put into the hands of this person. The response I got was so rehearsed and uncaring that it not only did nothing to relieve my fears but it solidified my concerns. I was told that if I was concerned I could write a letter. I am not so naive as to not see that this is just a way to get rid of the complainers. Or maybe to flush out the ones that are sick enough to be willing to put in the time to complain. Well I have the time. So I decided to do a little research of my own. I needed to know if maybe it was just me or I was over reacting. Turns out it’s not just me.

So in addition to my review let me add these…

Fair and accurate diagnosis, Bedside manner, spends time with patients all one star on Vitals.com.

You are better off going to the animal hospital across the street. The office is dirty, smells and there were two roaches in the exam room. He is rude, smells, and pays no attention to what you are saying. He is nothing but a as Dr. who is paid 175 by disability to give you an unfavorable report. Seeing patients is a front.

http://www.vitals.com/doctors/Dr_Richard_Reines/reviews#ixzz4loI6U9TG

RateMDs.com

This man is nothing but a Dr. for disability,, and would not even consider him a capable veterinarian. He does not care about your health and should be investigated. He will sell your soul for 175 dollar check from disability to say you are not disabled. He was texting on his phone half of the time I was with him, and did not report one of my problems in his report. He says there is nothing wrong even though I have had neurologist at memorial hospital say different. His office is filthy and smelled, he smelled and there were roaches in his exam room. If you are really concerned for your health find another doctor. There is an animal hospital across the street, you are better of there. I am in the process of reporting him maybe if others did the same the would shut this fraud and his dirty office down.

Horrible experience. I’m finding a new doctor. The office is dirty and disorganized, and the wait time is outrageous. Especially in this economy, when patients take time away from work to see the doctor, you would think they would at least try to run on schedule. Dr. Reines is rude. He scowls, tosses a urine cup at you, and is unapologetic about the wait. I don’t know why anyone would see this doctor again if there is any other choice.

-RateMds.com

I personally interviewed three other people who wish to remain anonymous that say they had  similar experiences. Although I know that this does not add a whole lot to the credibility of my complaint it does make me feel a little better that I am not the only one.

So this begs the question, as I stated before…Why? Why would people still be sent to a person like this? Why are people not being listened to? Is this simply adding legitimacy to the first rejecting? Is this SSI truly not knowing how people are being treated? Or are we just simply being discredited and ignored. And to what end? Why send people to a Dr that is not going to actually be able to give a real diagnosis? Why waist the time and money? Why not do it right the first time? Or is it really all just a rouse. Just a way to flush out the fakers. Couldn’t a real, honest and caring physician do the same thing with better accuracy and with out having to do it over again? Wouldn’t defense against appeals hold more weight if the physician was not constantly being brought into question?

I submit that people are more likely to fake or exaggerate when faced with someone that is obviously just in it for the paycheck. That those like myself that truly do need help are having to wait longer because of all the subterfuge. The tax payer money is being wasted paying those that do not care just to get to those that do.

I am not sure if this is going to even be read. And if it is read I am not confident that it will be taken seriously. But I feel like I have to at least try. I still believe that the social security administration as a whole is trying to do a good thing, and that they do in fact help may people. So I am hoping that some of that good will shine through.

There was one big question that Dr. Reines asked me that I was no allowed to answer. I am told and I am sure that you can see by this letter that I can be a bit long winded. So I would like to take this opportunity to answer that question as simply and concisely as I can.

Why can you no longer work?

I am in pain all the time.

I am tired all the time.

I never know from one day to another how bad I am going to feel.

Employers will only put up with you not feeling well so long before they let you go.

I have lost 4 jobs due to my condition.

I have about 5 pages of details if your interested but that is hardly the focus here.

Thank you for giving me the opportunity to express my concerns. I sincerely hope that this might make a difference that can benefit all involved.

This site is about me learning about. being me. Part of being me is learning to live with a chronic illness. Not to mention a few other fun miladies.  This is one of the hardest things I have ever had to do in my life. I have given birth twice. I have made the decision to not give birth once. I have had to start over from nothing. I had said good bye to loved ones on their last day on earth. I have kissed my 6 week old baby’s chest for last time without a scar as he was taken off to have open heart surgery.  But all of those things are…..in the past. But chronic illness is never in the past. It’s more like it makes you leave part of what you are in the past.

I was a dancer. I was a sword fighter. (yes really) I was physical. I was strong. I was a leader.  I was, I was I was.  I got diagnosed with Fibromyalsia shortly after my first son was born and then just recently with Degenerative Disk Disease and bi lateral sciatica. The DDD and sciatica could be fixed. One day. Maybe. But the Fibro is forever. Chronic they call it. A nice way of saying, live with it.  So the question becomes, How.  How do you live with something that is taking your life away? The easy answer is, you adapt. And that is the hardest thing I have ever had to do.  Maybe it’s just me. Maybe other people don’t struggle as much as I do. But this isn’t about them. This is about my journey in figuring out exactly how to “deal with it”.

I am doing all the things they tell you your supposed to do. Take it one day at a time. Get therapy. Make sure you have a support structure.  Learn adaptive skills. But to really live with it day by day is another matter. Sometimes I feel like the more work I do the worse it gets. The fact of the matter is, growth hurts.  Not just ow hurt. Screaming, crying, ripping,  heart wrenching, pain. The kind of pain that makes you cry for mercy and loose consciousness. Physically and mentally debilitating pain. Drowning in sorrow, anxiety, and fear every day. And every day trying to see through all that pain, to the growth. That growth is fragile. Little tiny sprouts in a stampede of giant beasts.  That little sprout is fed by the blood sweat and tears that come with all that hard work. I do believe that in the long run it is all worth it, but it doesn’t make the illness go away. It’s chronic. So no matter what you do, no matter how hard you work or don’t work its still there. This dark cloud hovering over everything. Every thing I do, I have to think about if I am going to have enough energy, what I might have to do the next day that I am going to need energy for.  Am I even going to physically be able to do it since i can’t walk or stand for more than a minute.

Then there is the anxiety and fear of thinking people are going to treat me weird or judge me. I am going to have to start using a wheel chair soon. What are people going to think? Are they going to think that because I can walk a little that i should not use a wheel chair. I struggle with my weight. Are people going to think i am only in a wheel chair because I am fat?  On and on the cycle goes. I am going to learn to break it….someday. Hey having the chair means I can go to Disney.

So I struggle. I cry. I reach out. I sleep…a lot. I go to therapy. My therapist is amazing by the way. He says I have come a long way.  I kinda gotta take his word for it right now.  I lean heavily on my Partner. And I keep trying.  And I write this blog. Why? So maybe some of you out there keep trying too.

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