Tuesday, November 22, 2011

Humbled and Honored

Another Blogger has honored me today. This is one of the blogs I follow, as Roy is a very cool guy and gives the world wonderful insights and delightful slices of his life every day. I just wish I was as good a blogger as he is.

So, those who follow me are urged to check out Roy's Blog. Yes, he has honored me today, but I think you will find interesting tidbits there most days!
Peace and Blessings,

Monday, November 21, 2011

'Tis the Season

Does it seem as if all of a sudden every where you turn you are encountering rude behavior? If so, believe me you are not the only one. I think it is just a stressful time of year. We have entered the 'holiday' season. Since time began, humans have had celebrations during the winter season, and for good reason. When the winter is upon us, we sometimes need to be reminded that it will not always be dark and the light will return.

So here we are, just a few days from Thanksgiving, and we are already starting to see people running around getting stressed out and being rude and unkind to each other. It is not easy to remain calm when someone is rude, but if we are to reclaim civility and peace for our society, we have to start by reclaiming it in our own lives.

The holidays are hard for us sometimes, in that the reality often doesn't match up with our expectations. We want so much to create either the holidays of our memory or the holidays of Norman Rockwell's imagination. For those of us who don't have halcyon memories to draw on, we think we will make up for it by making sure our loved ones do. For those of us with great memories we compete with trying to accomplish all of those things in a different time. And so we are worn out, frazzled, frustrated.

I think the first place to start to reclaim some peace and tranquility at this time of year is to acknowledge that the Norman Rockwell holiday was a figment of Rockwell's imagination. I love Rockwell's work, but honestly those illustrations were just that- illustrations. Yes, I am sure that there are families and celebrations that look like that, but I am also sure that there are families that don't. So I think we have to allow ourselves to relax and to create what works for us. No more 'keeping up with the Joneses'!

Now my maiden name was Jones, so I have always found the thought of 'keeping up with the Joneses' absurd. Believe me, we weren't worth keeping up with. Holiday dinners at our house were fraught with difficulty.When all of the siblings and their families got together there were bound to be arguments, fights, and just general mayhem. I don't remember a time when everyone was speaking to each other, there was always some point of contention somewhere. One of the memories I laugh at was the year Thanksgiving dinner was at the home of one of my brothers instead of my parents. That brothers wife did not care for me (her loss) and she very cleverly made that known! I happen to have food allergies,in particular coconut and walnuts. On that table there was not one dish that did not include coconut or walnuts. NOT ONE! From the salads to the stuffing to the gravy, some form of coconut or walnut had been included in every recipe. Then she whined because I excused myself from the table without eating anything. My brother yelled at me that I was disrespecting his wife, and as I left the room my family started arguing. Just another family gathering at the Joneses!

So, as we start the countdown to the end of the year, my advice is to relax. All you can do is all you can do. Perhaps it is time to simplify anyway. As we encounter rude people who are stressing out, smile, perhaps say a little prayer that they will be blessed, and remain calm. That guy that just cut you off on the freeway, ask God to bless his life and keep him safe. That cranky neighbor, ask God to pour out blessing on her. That frazzled cashier, thank her for working hard and wish her a blessed day. Whatever you do, do not repay rudeness with rudeness. You only make yourself unhappy when you do that, and the truth is rude people are unhappy people, no need to add to their numbers.

Perhaps remind yourself of the first few lines of the prose poem Desiderata (Latin for desired things)

"Go placidly amid the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit..."

Who knows, perhaps we can reclaim good manners and civility in our time, and if not we can certainly reclaim it for our life!

Friday, November 18, 2011

Anger is on my mind!!

I don't often talk about current events or news. I try desperately to not talk about politics or religion. I have friends from across all spectrum from left to right, and fortunately we respect each other enough to agree to disagree. But I am going to make an exception today. Because there is a story in the news that has caused me, and others like me pain.

The child rape case involving Penn State is an horrific thing. When I read the first story in the newspaper I was immediately saddened and sent prayers for the young people who had been so betrayed. Then there were the stories about the fallout, an venerable old man losing his job, and then the riots. That is when I started having trouble sleeping.

See, like an estimated 1 in 4 girls and 1 in 6 boys in this country I am a survivor of sexual abuse, child rape.Now, I am 57 years old, and have had much therapy over the years, and truthfully think of myself as having healed from the memories of being raped as a vulnerable 4 year old.But, as I read the paper, and the rapes of a 10 year old child were described in much more graphic terms than I had expected, it seems to have triggered a bit of PTSD, Post Traumatic Stress Syndrome. I was actually surprised at how deeply the newspaper story had affected me.

Maybe it's not just me, maybe there are others out there that are also feeling the pain, and the anger. Honestly, how could this be happening in this day and age. How can we still be a society that allows our children to be raped? I know that 50+ years ago things were not spoken, but I have seen in my lifetime increased awareness, increased information, or so I thought. Apparently we haven't progressed as much as we think we have.

I am not even sure why I started this post, maybe I just want to say to all of us that it is past time for us to speak up, stand up, and make this world safer for our children. I can honestly say I have called Children Services and reported things in the past and will not hesitate to do so again.When I was working, I have intervened in situations where I saw children unsafe, and would do so again. Had I witnessed the rape of that child in a shower,the police would have shown up as  they would have had to pry my hands from around the perpetrators neck.

Maybe I just started this post just remind myself that we need to make ourselves available to to protect our children, all of our children. As a child I knew that what happened to me was wrong.Then when I became a mother I knew that I would die to protect my child. I will never forget the moment my son was put in my arms for the very first time. I knew, in that moment, that love existed, and that every child deserves the best we have to give.I have always made sure I listened to him, and I fouhgt for him when I had to, I would do the same for any child, anywhere.

In the words of Albert Einstein...
The world is a dangerous place to live; not because of the people who are evil, but because of the people who don't do anything about it.

Thanks for listening.


Thursday, November 3, 2011

November is RSD/CRPS Awareness Month

Awareness months seem commonplace these days, and so it can be easy to ignore them. Then of course, something hits home with you in a personal way, and you feel the need to be part of the awareness. As the parent of a young man with autism, I have written about autism awareness. This month, I am writing as a person with RSD.

What is RSD/CRPS you ask? Well, according to the National Organization of Rare Disorders "Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome(CRPS), is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome."

Now, this post is not to seek sympathy, but to increase awareness. So many live with what are sometimes called invisible diseases. It can be difficult for those who love us to come to terms with the fact that we are in pain. My late husband hated my pain more than me. He felt completely helpless, not an easy thing for a loving spouse to feel. The first few years-I experienced my first symptoms in 2001 on our honeymoon-I felt a lot of guilt. Yes, guilt. It isn't easy knowing that family times and plans depend on how Mom is feeling that day.

It took a year before I found the doctors I rely on. Rare disorders are like that. Most doctors have limited knowledge of the disorder and even less knowledge of how to deal with it. I was misdiagnosed by several doctors. Really unfortunate because if diagnosed early there is a chance to stop the progression. I was progressed into phase 3 of 4 before I found the right doctors.Still, I was not finished with unknowing medical professionals. After I found my wonderful neurologist, who not only knew what was wrong with me, but knew how to help me, I had to change my primary care  physician. The one I had been using quite simply looked at the diagnosis from the neurologist and told me there was no such thing as RSD and that I was imagining it.

Now RSD has been in the medical literature for 150 years. The name has changed through the years, in fact the name has changed since I developed it in 2001, but it has been written about since the Civil War. So, you can imagine how disheartening it was for a physician I trusted to look me in the eye and tell me I was imagining the most excruciating pain known to exist. He simply refused to continue treating me if I persisted in seeing my neurologist for treatment of the RSD. For me, this is underscores why  we need to have an RSD/CRPS awareness month.Even doctors need to be educated.

Twenty five years ago when I first started seeking answers for what was different about my son, it became obvious that educating people was going to be part of the equation. I had never met anyone dealing with autism, and so I found myself researching and studying so that I could educate family, friends, even the doctors and educators we were dealing with. Fast forward,and I am find the same need to educate when it comes to RSD. Luckily, we now have more avenues open to research, share information and connect with others doing the same thing. All too often when you are dealing with something you can feel isolated, as if you are the only person in the world who has to go through what you are going through. In this day of social networks and awareness months it is so good to know that there are others out there who understand.

While no two people have exactly the same experiences, it is always helpful to know that you are not alone. This disorder is not easy to live with. There is no cure, and as horrific as enduring the physical pain can be, the psychological and spiritual pain can be even worse. It is not easy being in pain, being treated badly by the medical establishment,misunderstood by friends and family, needing large doses of narcotics just to get through the day. It will wear you out. It isn't even easy to describe the pain you are feeling.OK, imagine that someone has set your nervous system on fire, is applying a cattle prod and attempting to shred the flesh from your bones with a giant meat fork, all at the same time. I told you it was hard to describe the pain that an RSD patient endures. NOW multiply what you imagine that might feel like by about 10,000.You might be getting an idea of the severity of the pain. Honestly, that is the best picture I can give you. Now imagine that the pain that is constant at about a 6-7 out of 10 can be spiked up to about a 12 out of 10 (I am not exaggerating) simply because the fabric of the skirt you are wearing was touched by a puff of wind. The pain colors every moment of your life. Every breath you take. Am I enjoying a sunset on my deck? What if the wind comes up, what if the fabric in this skirt is scratchy, what if I simply breathe deep and the pain flares? You have to think about these things,and learn to deal with them.

Of course, RSD is not the only disease/disorder that involves chronic pain, there are way too many. It just happens to be one of the diseases I have (it is the only one I talk a lot about, I won't bore you with the other 4). There are an estimated 5 million people worldwide suffering from RSD.The reason I talk about RSD is so that other people can be encouraged to talk about what they are dealing with. It is my small way of saying that you can learn to manage your pain, and perhaps even to manage to have a life in spite of it.

You can learn to manage the pain with medication, good doctors, and with the meditation and breathing that you use for so many things.For me Faith is so important in learning to manage something like this.Some days you might be stuck in poor pitiful me mode, but Creator will not leave you there. Most High will whisper to you that your next blog post should talk about the pain. So Spirit will nudge you to share your stories, share about the pain that is so integral to what is going on in your life.Share that I really do believe I have the choice to pray for healing, the choice to deal with the disease should healing not come. Life is all about choice. I choose faith in my Creator to overcome even the most painful disease known to man. What choices do you have today?