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.

Thirty 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 car repair,utilities,groceries and medical suppies. So, just as embarrassed, I am pointing out the button. Blessings.

Steps taken, baby steps, but steps...

So, after I got brave and blogged about where I have descended to in life, several things have happened--many more need to, but that is part of the story.This will be long, but for me putting things down and out there is a step--and don't we say on social media when we talk about life sometimes that "this may be bloggy"?

FIRST, I am still working on not feeling the shame and fear, and it is just hard. The positive words and actions of encouragement from so many online friends has been the only thing keeping me taking even baby steps, and I can not express how very very important you all are to me.


When you come to the place where you can admit that you have become pretty much non functional, you see how much you have let slip, and it is all overwhelming. You are operating from the bottom of a deep hole, and just starting seems impossible. You tend to feel paralyzed by it all into remaining  in inaction--even though you are not stupid enough to think inaction is acceptable. AND of all my fears and anxieties--feeling stupid is one of the things that is most uncomfortable to me.

SO, after I blogged my distress signal, I actually did make some phone calls.

I ended up with the numbers for 4 crisis lines, and called all 4.Let me say ONE was extremely helpful, one was generally helpful, and two of them, when I got off the phone I wanted to smack the person I had been talking to.


I found that the County Mental Health Center has changed the way it does things and I will be welcome to use their services, after some obstacles have been cleared.This is big, since I was denied service there while we were in the midst of my sons worst health issues. Long story, but it really is the most convenient place for me.

But there are major obstacles.

First, I lost my drivers license--not they took it away from me, I just must have dropped it somewhere, and you have to have valid ID to be helped. SO, this was a step I managed to take--I steeled my nerves and went to THE DMV!!

Now,it also seems my license had expired on my birthday last month, and I have also managed to lose my birth certificate. BUT, being old has its perks--you do not NEED a copy of your birth certificate at the DMV if you are 65 or older--and my last birthday put me in that category. Who knew getting old wasn't all bad?

So,things actually went really easily at the DMV--and how many times will you ever hear someone say that so far the DMV experience has been the most positive part of the story? 

I renewed my driver's license, I have a lovely temporary copy-BUT the Mental Health Center doesn't accept temporary and the new license takes 2-4 weeks to arrive. OK , setback, but what are you going to do? I have made calls, and taken at least one proactive step,  so it is half a victory.

The next obstacle is getting enough money to take care of the expired tags on my car. Because of the generosity of strangers I am halfway there.

I was also able to pay the gas bill, so they won't turn that off--we still have hot water.

The electric bill is in arrears, along with the car that is the next project.

So, I am not out of the woods, I am however taking teeny tiny little steps towards the meadow (ok, was that a really bad metaphor?)

I just need to keep moving, as slow and tortured as it is, and I am doing my best.

So, I guess all of this is just to say thanks for the support--please keep it coming, and I think using my blog to be accountable will be something I can do as a step.

Thank you all.

EB

Why I stopped looking at Facebook and other things

I am depressed. Seriously depressed, and I need to find the strength to start calling and getting help.

I stopped looking at and posting on  facebook without really realizing that is what I was doling.

Last fall, I blogged about someone who had been harassing me online, and that it had affected me more than it should have.Turned out it was someone that I didn't know,but then  a couple of times I posted on facebook about problems in our lives--and our lives are problematic, and someone I did know made comments.

So I stopped posting.

Part of the problem is that it is all too easy to retreat into isolation in this day and age.Too easy to not have real life face to face interaction with people, and so there is no one to tell you that they are worried about you as you become detached from life.

 So, here I am deeply depressed, and not really knowing how I let it go on this long--but then that is the thing about depression.

So, send me some good thoughts. I am working up the strength to start making phone calls and finding help--again.

It is not easy.

There is embarrassment and shame, and fear. SO MUCH FEAR.

Life is just hard, we are always struggling financially with no let up, and as blessed as we are we also live in fear. Is this the day they turn the gas off? Is this the week I can't afford groceries? Damn, my car tags are expired again.

The stress and shame has worn me out, and I need all of the encouragement I can get to find my way back to the world. 


So prayers, mojo,good thoughts please. I miss being a real person, and I feel so unreal right now.


Peace, I really need some.

EB


P.S. I dislike doing this but there is a paypal button over there just in case.My son and I are struggling, it is embarrassing and fearful to point it out. 

  

Where were you at 22?

In honor of my late husband,today is his birthday,  please tell your young ones your stories as they make their way into the world. 





My husband was killed by a drunk driver.

Quick, what picture did your mind flash when you read the words 'drunk driver'?

In our case the words 'drunk driver' mean a 22 year old girl. A lovely young woman with her entire life before her. Recently graduated from college, with honors. From all reports, she was a goal oriented, studious college student.She is very close to her family, she goes to church on Sunday. After her May graduation she went to work, as an accountant and moved into her own apartment.

After she got off work Friday night, she reportedly went out with some friends. Young people, enjoying themselves on a Friday night. Laughing, talking, drinking. Then she got into her car to drive home. Her blood alcohol level was around .118, well over the legal limit. In her intoxicated state she drove up a freeway off ramp, past the signs that said WRONG WAY and drove northbound in the southbound lanes for a couple of miles at freeway speeds until she hit my husband's car head on, killing him instantly I am told.

This is on my mind because my friends and I have children in this age group. Children that are stretching their wings. I remember reading somewhere about how a butterfly struggles to exit the cocoon. If we were to help the butterfly, the butterfly would not be able to fly and would die. It seems that the struggle to break free creates the strength necessary to fly. Those of us with growing children know the truth in this. We watch as our children struggle with the silken constraints, and we want so much to help them, but the most we can do is hope that we have taught them right from wrong, and that life is always about choice, and every choice has consequences. We watch our children stretch their wings, and hope they know that there is nothing they can do that will make us stop loving them. We hope they know that when we see them struggle, we will do our best to make sure they learn how to fly.

My husband and I were always very open with our son about our youthful struggles with drugs and alcohol. We felt that since genetics may play a role in addiction, we had a responsibility to tell him our stories. He knows about our 12 step programs, and why we attend. He knows that we celebrate 2 birthdays a year. In fact, he has been quite proud of our milestones over the years. He will tell you that we choose not to use alcohol at our house. He will tell you that we choose not to use illegal drugs at our house. He will tell you these things with pride in his voice, because he knows that in life there is always a choice, and every choice has consequences.

Being a parent is a hard job. We watch our children stretch their wings with such pride and fear. What if we see them struggling, when do we help, how do we help. Have we talked to them about the embarrassing stuff? Kids will groan when the subject turns to sex, drugs, alcohol. They will roll their eyes, but we must tell them anyway.

Do your children know your stories? Do they know that you were their age once, and that you made choices and lived with the consequences of those choices. Sometimes the consequences are benign. You are 22 years old and you choose to celebrate the end of the work week by going out with friends and laughing and talking and having a good time. Since you are choosing to have a drink, you have chosen whose turn it is to be the designated driver.

Sometimes the consequences are tragic, and you have too much too drink and you choose to drive drunk, and you drive up the off ramp past the WRONG WAY signs and you kill a man, and nothing is ever the same again.

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 once who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs.The William and I are struggling,and just as embarrassed I am pointing out the button.We are continually blessed.

Father's Day Memories

Even though my father was very stern and reserved with me, I do still have some very good memories of him.

This one starts out hard, but ends up with a great line...
I had to pretty much run away from home to go to college. My father forbid me going, and I ended up living at home a couple of years until I turned 18 and could leave on my own.My mother understood it was something I had to do, and I think that is because she couldn't afford to go to college when she graduated from high school in 1930. So, I turn 18, and I am on my way to the bus station to head to college. The last thing I hear my father say to my mother is that "Nothing good will come of this, she'll go off and come back pregnant." He had such faith in me! So of I went to college, majored in theatre, ended up working in theatre and radio, won awards in both careers. My father saw me on stage one time, and heard me on the radio once. A few years later, when their health was failing, Papa had congestive heart failure, emphysema,and Alzheimer's. Hard to believe, this was a man who retired from a roofing company at 65, and went back to work at the roofing company at 67, and the young guys couldn't keep up with him. He fell off a roof when he was 73, around Halloween. He broke his hip and had surgery to implant screws and a rod the first of November. Doctors said he would take 8 months to a year to walk again. On January 1st, we were watching the news and there was a fire at the company where he had worked for 50 years. He said "They're going to need everyone and went back to work on January 2nd. He worked for several more years, until the Alzheimer's got bad enough that he couldn't work anymore.But I digress...when his health was getting worse and he and mother couldn't manage on their own anymore, I left my career in radio and back to California to take care of them. I did not know at that time that I was pregnant. After I had been there a couple of months it became obvious I should see a doctor, and I was shocked to learn that I was expecting. Remember what my father said when I left for college? Well here it was decades later,I was an award winning actress, designer,and broadcast news director, afraid to tell my father that I was pregnant because I was his old maid daughter. So, I call my little sister (two years younger than me) who was a married mother of two. My sister tells my mother, and my mother goes in to tell my father while I sit on the porch. It is late summer, and the windows are open and I can hear my mother telling my father what the doctor had said and the next thing I hear is my father's voice..."I told you if we let her go off to college this would happen, she came home pregnant."

Did you notice that I was his old maid daughter? This is one of my favorite stories. I was working at a theatre on my 25th birthday. We didn't have a phone back in the costume shop, so if there was a call someone would have to come get us. So it is the afternoon of my 25th birthday, here comes the office girl who says "You have a phone call, it's you're father." My father? My father never calls. He always has my mother call, even his favorite sister. He will talk on the phone  but he never makes the call. Assuming the worst, that something is wrong with Mother I run to the office to answer. I pick up the phone and say hello. My father says hello, and I ask him if everything is OK. Is something wrong with mother? Here is the rest of the conversation...

"No, your mother is fine, I wanted to talk to you."

"Is everything OK?"

"Do you know what today is?" 

"Yes, sir, it's my birthday."

"Do you know how old you are?"

"Yes, sir, I am 25."

"What did you do last night?"

"We had a show, I worked."

"What are you doing tonight?"

"We have a  show Papa, I am working."

"Did you get married since the last time we talked to you?"

"No, sir, you know I didn't."

"Are you sure? Do you have plans to get married tonight?"

"Yes, sir.I am sure.No, sir, no plans to get married.""

"Do you know what it means when a  girl turns 25 and she's not married?"

"No, sir, I don't."

"It means you are an old maid.If you turn 25 and you're not married you are an old maid. there has never been an old maid in my family.I'll be the first one to have an old maid daughter.Do you know what happens when you turn 35 and you're not married?"

[By this time I am laughing]
 "No, sir, I don't know."

"If you turn 35 and you're not married,and it doesn't look like you're going to be,at 35 you become the little old lady who lives on the corner."

[I am really laughing now]
"Papa, I am 6'1" and weigh over 300 pounds, I hardly think I will be a LITTLE old lady."

"It doesn't matter, at 35 you become the little old lady who lives on the corner. I won't be able to hold my head in my family."

And then he hung up. I am not sure to this day whether he was serious, but once again I did not disappoint my father. I was 47 when I married. I wish he had still been alive to come!

Here's the last one I will share today. I only talked back to my father twice in my life. The first time was when I was 13, and it was the last time he whooped me with the leather strap. It had to do with me sassing my mom, and that was NOT allowed. The second time, I was 22. It was the night before my sister's wedding. For reasons that don't really matter anymore, my father had decided he was not going to the wedding. My sister was hurt. Some in the family thought he didn't want to get dressed up. He wore bib overalls every day of his life. I only saw him dressed up in slacks and jacket one time. But my sister didn't care if he came in his overalls, she just wanted him to come. One of our older brothers would be walking her down the aisle because of my father's stubborn stand.So, since we are all busy getting ready for the wedding, it is decided that we would go pick up some take-out food. I ask my father to go with me, and he does. While waiting I get my nerve up and I say to him "I am going to say this and you can whip me if you want, but you are going to that wedding." "No, I'm not," he answers. "Yes, old man," I say, "you are going to that wedding if I have to knock you out and take you there myself." Nothing more was said, the food came and we took it home. We all went to the wedding the next day, and left him at home. We got dressed, and the music started.As the maid of honor I start down the aisle just before my sister, and there in the last pew, sitting on the aisle, was an old man in bib overalls. I looked him in the eye and smiled. He did not smile back. My sister, who had not cried yet that day started crying when she saw him. So, later as I drove him and mother home from the reception,a reception where he had a great time and maybe got a little tipsy, he said to me "you were right, but don't you ever talk to me that way again."  I never spoke back to him again.

The morning he died, his mind was amazingly clear. I had him up and bathed and dressed in his beloved overalls. he was playing with my son, who was about a year old. Papa told my son he loved him, then looked at me and said "He's going to grow up to be a fine young man, I wish I was going to be around to see it."

I treasure those words, and I miss my father, and I wish he were here to see that his words are true. My son is an amazing young man, and I tell him the stories of my father.

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 once who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs.The William and I are struggling,and just as embarrassed I am pointing out the button.We are continually blessed.

Mother's Day

Mother's Day is not an easy day for all of us. Some of us are struggling,physically,financially,spiritually. 

Some of us are alone,missing Moms, or kids,or just wishing life was easier even one damn day.

In years gone by,my guys were not the best shoppers. So, I would get really sweet Mother's Day gifts like a San Francisco 49'ers ink pen-we live in Kansas City and my guys were die hard Chiefs fans. So, we began a new tradition. I would go shopping for my annuals and soil, and my guys would provide the muscle for me to spend the day planting flowers. Then rather than go out to a crowded restaurant, William would bake a Di Giorno pizza and serve dinner. It became a wonderful tradition. I loved it so much.I miss it so much. Amazing how traditions are formed,and how important they become in our lives.

HAPPY MOTHER'S DAY. You either are a child of a  mother or  a mother or are truly blessed to be both of those things. You may be a friend or an auntie or a neighbor who smiles, but you deserve to feel the love and respect and admiration that comes from those words.

Some Mothers may not hear those words out loud. OH, I could remind my son to say them, but it would sound forced.So, I choose to not remind him. I choose to allow myself to feel true gratitude for the gifts I have received this morning. Brother sun peeked out for a minute--and it has been raining all week, so that was a gift.

 When the eternal teenager gets up, he will read me the funnies.We will talk about last nights hockey game (his beloved team did not win) and I will treasure the times we are able to have a spontaneous conversation no matter how short or long every single moment of my life. I choose not to feel left out because I do not receive gifts or hear the words. I choose to know and believe that they are there.

I will share vicariously in the joy of others as they post pictures of their families.Being able to share the gifts and blessings of others is definitely a choice, and I have to choose to feel gifted instead of bereft.So, blessings to all who share their gifts, and to all who can be grateful for those gifts.

Are you feeling alone today? Has someone forgot to call or write? I am so sorry. We will choose to forgive them. Recognize the gifts all around us, thank Mother Nature for the sunshine, or the rain.

 I may even wish Mother Nature a Happy Mother's Day, even though she has been annoying me to no end with the never ending days of rain this week.

 Happy Mothers Day to those who need to hear it.

There is a place in all of us that needs to know we belong. 

Happy Mother's day.

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 once who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs.The William and I are struggling,and just as embarrassed I am pointing out the button.We are continually blessed.

Dandelions and Spring things

Spring has sprung, and it's about time. It has felt like Narnia around here-and that may be part of why I was busy having a pity- party of one this morning. The bank account is empty, as I have tried to catch up  on the gas and electric, because as my son has suggested we think Mother Nature has probably invested her retirement funds in utilities and is gleeful at the huge bills we have racked up this winter.

My whining about the Narnia winter has inevitably given way to my misery as the pollenpocalypse makes me remember that ice and snow aren't really the worst things dear Old Mother Nature has to throw at me--ice and snow may keep me from getting out much,but at least I am not allergic to them.

So, here I was wallowing, stressing, kvetching to the universe that damn it, we could use some grocery money, etc.etc.etc,yada yada yada, and I hear a tapping on the patio door.

tap.tap.tap.

tap.tap.tap.

So I head to the kitchen to check it out. Open the blinds and tapping on the sliding glass door is the 2 year old neighbor. Now, this little guy is one of my favorite people in the world, and it doesn't hurt that he is totally toddler cute and funny , or that he thinks I am very cool. I love talking to him.

His sister thinks this...

Had a great conversation with the 2 year old (he lurves me)

The 5 year  old sister said "YOU speak two-year old?"

"I do"

Sister says "So does my mom, none of the rest of us ever know what he's talking about"


So, anyway, there he was tapping on the patio, so I slide the door open and he hands me a handful of 'flowers'

"Brunj you dandies" he says.

My heart thaws, and I say thank you so much, and he turns and runs off to play with his sisters.

He brunj me dandies!!

Now, many folks do there best to rid the world of dandelions. My late husband and I totally disagreed about dandelions in the lawn. He HATED them, wanted his golf course perfect lawn. Me, I like 'em.

They are a sure sign that spring is sprung, and they remind me of my father. My father, old Missouri farm boy thought people getting rid of dandelions was just plain dumb. He taught me that dandelions weren't always considered the enemy, before perfectly manicured lawns they were praised as a bounty of food,medicine and health for your garden. Gardeners used to weed out the grass to make room fro the dandelions. 

Dandelions are good for your lawn. Their roots loosen and aerate soil. The taproot pulls nutrients from deep in the soil and makes them available to other plants. Dandelions actually fertilize the grass. (I never did convince my husband of these things).

Besides, dandelions are fun. The only flower little kids can pick without getting into trouble. You just don't run out of things to do,like make little bouquets for the neighbor,hold them under your chin to tell your fortune,and once they go to seed and become puffballs they are make-a-wish magic.


Hey, they worked some magic on me this morning, lifted my mood right out of the pity party for one realm and made me smile.

I hope someone brings you dandies soon!

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 once who was embarrassed about asking for help that if we don't make our needs known how does anyone ever know we have needs.The William and I are struggling,and just as embarrassed I am pointing out the button.We are continually blessed.