The Kindness of Strangers

And God  
said "Let there be heat..."


Well,not exactly God,it was actually Wendy  from the gas company...but I cried anyway.


A little back story...

We're poor.We juggle and struggle with keeping the  bills paid,and this summer they turned the gas off,major annoyance, but the air conditioning was more important,so we heated water on the stove and struggled on.

And then the electric company got crazy...but that's another story..suffice it to say we couldn't manage the money to get the gas turned back on.

And the calendar pages kept turning,and the season changing.We were getting to the time of year when heat is important,and still we struggled.

I have made myself sick stressing about it.If I don't pay the electric bill and eat ramen,I can still only come up wit about two thirds of the money to get it turned back on.

Then on Monday I got a notification that some had used the PayPal button on my blog...and it was the final third of the amount.

Now,someone I had never met had us on their heart,and it was the amount that made it possible to turn the gas back on.

The  appointment was made.As the week went on it ho

got colder every day.

The appointment window was 12-2,and by the time the lovely Wendy got here it ,1:50,I was stressed to the max. True story...just as she got here IT STARTED SNOWING!!

Thirty minutes later,the lovely Wendy said "Let there be heat..." And there was,and I cried.

One problem down!!

Of course,nothing is easy,and naturally something else went wrong this week.The 5 year old Chromebook laptop finally died yesterday.The electric bill didn't get paid,the grocery budget no longer exists.

But those are miracles for another day. As my son would say,remind the universe we have PayPal.

But for today,we continue to be blessed by the kindness of strangers and We Have Heat!!

Peace and Blessings,
EB

Into The Darkness

I hate to whine,but I am not a fan of winter. The time change this past weekend has thrown me off.Now 5:00 in the afternoon feels like the middle of the night. 

 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 couple of weeks 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.

Do yourself  a favor. Relax,enjoy. Do someone else a favor. Visit someone who doesn't get visitors very often.There are a lot of folks who are struggling--believe me, I know. As much as financial help is necessary--and appreciated--human contact is also a struggle.

This time of year is a natural time for remembering, the winter season is a time for reflection and renewal. Today, with the solstice upon us, we are reminded that there is a reason why most cultures, from our prehistoric ancestors until the present time have holy days and ceremonies at this time of year. The nights are long, and life has slowed down as the earth sleeps and rests for the growing that will come. We as human beings have always seemed to be more spiritual at this time of year. We have time to reflect, and time to share the stories of our lives and the lives of those who have come before us.We have time to be social, and so we honor this season with ritual, tradition, and ceremony.We have time to tell our stories.

As you go through this season, no matter your traditions, I hope that you will find time to share someone's stories. Take a few minutes to connect with a friend who is grieving, or an older relative, and just give them to opportunity to remember.If they cry, all that is needed is your hand on theirs. If they laugh, your laughter will naturally come to mingle.It may be the greatest gift they receive this year.
Peaceand Blessings,

EB


P.S. I dislike doing this but there is a paypal button over there,just in case. I told a friend once who was embarassed about asking forhelp that if wedon'tmakeour needs known how does anyone ever know wehaveneeds.The William and I are struggling,and just as embarassed I am pointing out the button.We are continually blessed.

 

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 I did. 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. 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.Some days you might be stuck in poor pitiful me mode, and that is OK.Life is hard and pain just multiplies the hard some days.

BUT, you are not alone.Even people who can't imagine the pain can sharetheir energies with  you...but you have to share your story so they will know you need them.

Peace and Blessings,

EB


p.s. I dislike doing this but there is a paypal button over there, just in case. I told a friend who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs.Right now our needs include getting the gas turned back on. So, just as embarrassed, I am pointing out the button. Blessings.