Good Bye August

and quite frankly, good riddance. Don't let the door hit you on the way out.

Hello September, please realize that August was just a meanie that hung around way too long and kicked our butts and we would like you to be especially nice to make up for it.

September already? How did that happen? AND Labor Day is on the 1st this year, so not only is it already September, it is unofficially the end of summer. Good. Summer has been a bitch lately. In fact, it would not hurt my feelings if we just struck the last week of August from the calendar. It's a hard week, it's the week I buried my husband. This year it's the week a dear friend lost her mother and another dear one her mother-in-law.

It's the week I ran out of money and had to tell my son we couldn't buy groceries. But, he's a trouper, this is how part of the conversation went...

Me: It's hard the last week of the months some months. Sometimes it seems like it takes a while for the universe to provide.

Son: Did you tell the universe we have paypal?

Hey, you can get through anything when your kid makes you smile! I posted that on facebook -we call these snippets of conversation Williamisms-and I got to share with another friend who is also struggling with money issues. 

Being poor is hard work sometimes. No matter what anyone tells you (and I try to not pay attention) poor folks are not living like kings. We are managing as best we can, and we are scared to death most weeks that there will be an emergency. When something breaks, we learn to live without it. When the computer that is your lifeline to the outside world is on its last leg you hold your breath every day. When you lose 270 pounds, you just tighten the elastic and keep wearing the same old clothes. Because that is what poor people do. We just tighten our belts until there is no more space for new notches.

But, it's OK, because there are far more important things in life than things and there are always reasons to smile. My friend with money problems and I got to laugh with each other, because when I posted the Williamism, she shared her struggle. Her last week of August need. She  managed to scrounge up enough money to buy butter and toilet tissue. 

Of course, my  mind immediately smiled,and I got to laugh. Immediately wondering what recipe you could come up with for buttered toilet tissue! Then that reminded me of days working as a cashier and remembering other incongruous items that people bought together.Yes, your cashier might talk about you, but we aren't judging, we are smiling. Like the time the Mayor of our fair city came through my line one Friday afternoon and purchased a couple of bottles of wine and several packages of light bulbs. I admit I did ask what kind of party they were having at the Mayor's house.

So, even though we all struggle, there are always moments to share. The important things in life are always available. A son with a quip, a friend with a story you can smile at.

So, bring it on September. Even if we have to choose whether to buy groceries or pay bills, even if we have to lay hands on the computer and pray it keeps going, we will always be able to find something to make us smile.

"The only way to get through life is to laugh your way through it.You either have to laugh or cry. I prefer to laugh. Crying gives me a headache."~~Marjorie Pay Hinckley.

So, welcome September! I am ready, I will greet you with a laugh and a smile.Be nice, because August just needed to leave, it's not nearly as lovely as you are.

Oh, and if you have a recipe for buttered toilet tissue...

Valentines Day

Valentines Day. Such a lovely holiday, let's all celebrate love.Yada Yada Yada. (can you see how I feel about it?) But Valentines day can be a minefield for those, like me, that have mixed experiences of the day.

Oh, I hated Valentines day as a child. The Fat Lady started out as the Fat Girl, you know. Back in the dark ages when I was in elementary school 'self-esteem' wasn't a part of the psycho-babble yet. So those of us who were outcasts for whatever reason hated Valentines day. Oh, it was all so innocent. For a few days before we would spend our art class time creating a receptacle for the valentines. There was red and pink construction paper and paper doily scraps everywhere, and the Elmer's glue residue stuck to your fingers. At least that was fun, peeling the Elmer's glue from your fingers.

Then the big day arrived, and we were allotted time to deposit our valentines in the boxes. A mimeographed list of names had gone home with us,and we were free to create to our hearts content. If you were lucky your Mom would let you buy a box of school valentines, 32 to a box back then plus the bonus teachers card. So, every one went around and put their little cards in the box. Then of course we had the treats our room mothers dutifully provided and everyone looked at their valentines. As you reached in your box and took out 2 or 3 cards, after all the teacher had to give you one, and maybe you had one friend, and then some dumb boy had to tell you why you were outcast, you did your best to make sure no one else saw. But it seemed like they all knew anyway. But, you knew that if you showed any emotions they would have power over you, so no tears. You bravely told everyone that you wanted to wait and look at them at home.

Fortunately all of those classroom Valentine parties were in elementary grades, and you didn't have to repeat that particular little piece of Hell again once you reached middle school. But, Valentines day was still an empty day, void of love, and rife with bad memories.

Decades pass, and one day a tall thin man crosses a street in a small town in Missouri. He teaches you, among other things, that yes, you are able to love and to be loved. He manages to surprise you every year with a lovely expression of love on Valentines day. You give him a small plush animal for his collection. A collection that he started when you gave him his first one. A silly little collection for a big tough Marine, but a collection that is cherished by him.

Then circumstances change again. The love of your life is taken away from you by a drunk driver, and you get thrown into the long, difficult act of grieving. Every special day, every holiday is another reminder that you are alone again. That no one will make you smile, and tell you you are loved and ask you to be their valentine. Valentines day is a difficult, difficult day for those who are on the outside looking in. Those who have never had a love, and there are many, those who have lost their love and are all alone again.Valentine's Day is hard.

The other holidays are difficult, but there are ways to get through. But Valentine's Day, that is hard. Everywhere you look, from the aisles of the grocery store, to the restaurant ads in the paper, the commercials on TV you are reminded that this is a time for love and a time for lovers, and you feel all alone. It seems as if the whole world is operating two by two, that no matter which way you turn you are surrounded by couples, and you no longer have the person that made you part of a couple. Valentines day is long and lonely.

If you know someone who is alone this year on Valentines day, please reach out to them. A note, a small card, a phone call. Let them know that they are not alone in this world. Let them know that another human being cares about them. See, we all need a human touch. We may be rooted in faith,and know that there is a Creator,and that that Creator loves us. We may know that there is in us a part of the Divine, and that there is no where we can go that the Divine is not with us. But, the love of Most High, as wonderful as it is doesn't have the human touch unless we provide it. We are made in the image of the Creator, we are told,and so we must be the arms and hands and voice of love. We must be the human touch. There is someone out there in need of your voice, or a hug, or just the touch of your hand on their sleeve. So, make sure that you do something special for your sweetheart. Do not ever let a day go by, and especially on the holiday that is about love, make sure the one you love, the one who loves you, knows that you never take one moment for granted. But, please, if you have an extra moment reach out to one of the lonely ones. They will appreciate you more than you can know.

Love Is Stronger Than Death

Love is stronger than death.
So I must be content to know that
love is not affected by death-- ...
it doesn't end, it doesn't diminish,
it doesn't change.
Instead, love is immortalized
and eternalized through death.
And the possibility of that love ever
being damaged or broken
is eliminated forever.
I'll put my trust in love.

 

My Wish For Us All

My wish for us all...

The quote for today is...
Garner up pleasant thoughts in your mind, for pleasant thoughts make pleasant lives.~~John Wilkins~~

Think good things! I can't tell you how many times I have to remind myself of this. Thinking good things will keep me rooted in the now, the present, living in the moment in a way that I can remember that this moment will never come again. Recognizing that our Higher Power is here, right now moving through our everyday activities, no matter how trivial they might seem. The floors need swept, there is a chance to speak to your Higher Power as you move the broom back and forth. I love using the rhythms of life to take a moment to slip into a quick meditation. The dishes need washed, right there is a moment to be thankful for the bounty that provides food in excess. Yes, in excess. One of my favorite spiritual practices is baking bread. I have prayers that fit perfectly the rhythm of kneading dough.
Yes garner up pleasant thoughts. Garner means to gather into storage, to earn, to accumulate, to acquire by effort. So grab onto any pleasant thought that passes, store it away in your memory where you can bring it out when you need something to remind that life is good. Something to remind you of all that you are, and all that you can be. There is in every one of us the ability to give beyond reason. To care beyond hope. To love without limit. To reach, stretch, and dream, in spite of your fears. There is in each of us the ability to give beyond reason, and we do so every day when we take time to encourage and uplift each other. The ability to care beyond hope, as we come together to pray and care about the concerns of each, we expect the best outcome beyond the hope of the seen into the hope of the unseen. We love without limit. All of my friends  from around the world who found each other , loving each other through the day no matter what obstacles and challenges come our way. Reach, stretching, dreaming, knowing that there is a place where we can share those dreams and be encouraged to make them come true.Yes, acquire those pleasant thoughts, store them up, use them liberally to remember, that life indeed is good, and so are you!!

Peace and Blessings,
EB
 

How to Survive a Bad Day

So, I had a really bad day yesterday. Whined about it, fretted about it, stressed out about it to t he point that I had trouble sleeping and woke up with a headache. None of these things helped.

I am getting closer to having enough money to take care of the situation with the back taxes and expired car tags. Doing without, living frugally and the kindness of some friends has put about half the money in the bank. So I headed off to pay the rent yesterday feeling like I might get this resolved soon.

Got to the complex office and misjudged how close I was to that concrete thing they put at the front of parking spaces, caught my bumper and pulled it off on one side. So now, the car that I count on for any shred of liberty and independence is not only illegal to drive, the bumper is falling off.

Shouted on facebook asking local friends if they knew anyone who could help fix it, and no one. Worried all night, fix the car and there goes the money for the tag issue, Finally, came up with a temporary solution this morning. Duct tape the bumper and live with it! Ideal solution? Not really, but it is a solution. We don't drive many miles in a week, so it should hold for a bit.

Just waiting for the universe to send the money to take care of both issues!! Trying to distract myself I spent some time reading some things I have written in the past and wouldn't you know it, I have written about worrying a problem!!!

The quote for today is...

Letting your mind play is the best way to solve problems.~~Bill Watterson~~

Sometimes when we get a problem in our life we worry that sucker to death. We look at it, and dissect it, and second guess it. Sometimes we make elaborate plans to deal with it. Sometimes we decide to ignore it, and we have to construct wieldy ways of pretending it just isn't there. Like the elephant in the living room, we have to find ways to live around it without acknowledging it. We spend tons and tons of energy without accomplishing anything. Sometimes we just try to hard. Perhaps we need to let our mind just relax, and play for a while. This is not denying a problem, we are aware that there is a problem, we are just allowing our self a time of relaxation, so that we can come back to the problem with renewed energy. Sometimes when we allow ourselves to relax a bit, and we all know this is true, the answer comes to us, seemingly out of the blue. Perhaps, out of the blue, is just us having let go long enough that our higher power could get the message through. Sometimes when we are in crisis worry mode, we make so many plans in our own power, that the answers we have been praying for can't get through. Our Higher Power is calling us, but the line is busy, our inbox is full.

So, no matter what is going on is your life, always, always remember that taking time to relax and take care of yourself is not a selfish act. It is a necessary act for your good and the good of those you love. If I didn't spend my hours meditating and praying, my life would be much more complicated. And we all know my life is way too complicated as it is! So here is to letting go for a few minutes today. Let your mind play, let your spirit relax so that you are able to make the best choices you can from a place of renewed energy. Choose to let go for awhile, it's a good choice.

Peace and Blessings,
EB

p.s. the donate button is to the right, I hate saying that, but you never ever know.

Everyday Miracles and The Best Medicine

I've had a really stressed out crappy day. Seems like they are like that lately. Life has been really hard,and quite frankly has worn me out. The months of triple digit weather have left me feeling depleted, physically, spiritually, and financially. After catching up the electric and gas bills,buying some groceries, getting my sons prescriptions filled, I am left with 86 cents in the bank and the low fuel light is on in my car. It is the 15th of the month, how is that supposed to work?

But, in the midst of all that, I am reminded that I am indeed blessed. I was able to catch up the electric bill, which was twice what I had budgeted the last few months because of those triple digit temps, because of a small miracle. I was sitting in my meditation spot, talking to Creator, wondering how to pay the bill.Nothing came to mind, I finished my meditations. Grabbed a cup of coffee and logged on the computer. There I was reading my facebook feed and I got a message from a friend. Check my paypal account. This friend had felt like I needed to be blessed. There was the money for to catch up the electric bill. Now I use the word friend, but this is someone who I have never met in person, someone I met in a community on the computer.Amazing. Even though we are not of the same religion, we both had our faith reinforced that day. I was reminded that in the midst of my stressed out crappy life Spirit still hears me and she was reminded that in the midst of some spiritual questioning she still hears Spirit.

A few days later, in another cyber community, I asked my friends to say extra prayers for me. That's all, I didn't share the need, I just asked for prayers, because being broke this summer because of the heat and everything costing too much is just not conducive to me climbing out of the depression I have been struggling with. But, one of the needs was the gas bill. Granted, I don't need the gas for heat, but hot water is a good thing.Later that day, I got a message from another friend-this one I have met personally, but we originally met online-again the message was to check my paypal account. There was the money to pay the gas bill and get some groceries.

So, I know that Spirit is aware of me, and that I have friends who hear Spirit. Those seem really rather miraculous to me these days.Depression is a terrible disease, one that take's a lot of my energy to deal with,and I just haven't had the extra energy lately. But, even though it feels like my steps forward can be measured in centimeters, I do think I am starting to move forward a bit,and as I am often heard to say...every step you take is a step away from where you used to be. Now it may only be a centimeter away, but it is away. So, here I am, struggling,and today just throws everything it can at me. That stupid low fuel light came on when we went to the library, and then we got home and on the hottest day of the week my electricity goes out. Now my first response was to panic. I opened the front door, and the stairwell light in our building was still on. Because while I had caught up, the next bill has arrived,and my anxious mind immediately thought they had turned my electricity off. Just then, the apartment door across the hall opened,and their electricity was off too. So, the neighbor heads down to the basement of the building and it turns out it was the circuit breakers for the ground floor apartments.  So, one more crisis averted.

Of course, my panic reflex had already kicked on, and so it has been a long afternoon. My pain level went up and I got a headache. Stress will do that, its the adrenaline I think. That's when the Best Medicine showed up. My son checked out a DVD at the library,and put it in the player. It is a DVD of all of the Tom and Jerry cartoons ever made, and so for the last hour my house has been filled with the most beautiful sound in the whole world, my son's laughter. Tom and Jerry cartoons are his type of humor, and his laughter seems to come from his toes,and fill his whole body-and he is 6' 7" tall, so that is a BIG laugh. A beautiful, musical laugh that makes me smile. It's been a while since I smiled,and today, after the stress, after the worries, I have been smiling for over an hour.

So, while I still have problems,and while I still have depression, I have managed to take a step away, a step filled with smiles, and that seems to me to be the very best thing in a long time. Just a few everyday miracles and laughter, the best of medicines. Spirit seems to be hearing me, don't you think?

Struggles...we all have them

My life is a mess right now. I am in the midst of very trying times. Lost my home to foreclosure, dealing with illness-including these miserable shingles-moving, financial problems, deep dark depression, if it weren't for bad luck, etc. So I have to remind myself of some things. Our lives are lived half in light and half in dark. In Hebrew scripture God assures us in Isaiah(45: 6-7)...

I am the Lord, and there is none else: I form the light, and create darkness, I make peace, and create evil: I the Lord do all these things.

This scripture helped me to understand that those times when I am  experiencing the feelings that I compare to the dark night of the soul, those times were created for my good by Most High God. Now, how can feeling separate from my Creator be for my good? Because it is in those times that I truly have to believe that I would seek my Creator even when I am not feeling like  Most High is there. The times when my prayer life seems devoid and dried up, I can continue in my prayer life, because I know that God exists no matter how I feel. 

In the New Testament sacred literature it seems to me that the followers of Christ were the only one's who doubted. The Romans, the Sanhedrin, the enemies, they knew that here was someone who was going to change everything. But, just as Thomas became forever called doubting Thomas, the followers of the Christ had questions. They were right there with him, they heard what he was saying, they saw the miracles,and yet, we see time and again them questioning and the Christ explaining. If questioning continues even in darkness, the answers must come,though I don't have them right now. So, as darkness must turn into daybreak, waiting on the Most High God must be able to survive the darkness. Sometimes it is just the natural progression of light (activity) and darkness (rest or passive)that is normal in everything.

In Dark Night of the Soul (which is a poem and a treatise on the meaning of the poem) St John talks about the darkness as stripping away the ego. In psychoanalytic jargon the ego is that part of us, the self,serves as the organized conscious mediator between the person and reality especially by functioning both in the perception of and adaptation to reality.So John of the Cross would say that 'greater is the darkness wherein the soul journeys and the more completely is it voided of its natural operations, the greater is its security'. In other words, the more of self we are stripped of, the more secure we are in the fact that God is out there.That the planet will turn and the light will follow, and growth will have happened as the natural progression of times of activity and rest.

None of us follow the same path in our spiritual growth. Many of us experience many different traditions in our journey. We are asking questions, looking for answers. The Christ said in the Sermon on the Mount, everyone that asks receives. The word used for receive has the meaning of gaining. So those who question gain. Those who can embrace the dark as times of rest and growth can relax and know that the questions that inevitably arise in these times will be answered. So while I am struggling,I have to hang on, continuing to question.

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?

On Tough Times

Tough times come to all of us. Some tougher than others, but all of us will experience challenges and obstacles in life. Today I am reminded of something I wrote not long after my husband was killed. It is as applicable today as it was then, so I think I will share it.

The quote for the day is...
People say, "What is the sense of our small effort?" They cannot see that we must lay one brick at a time, take one step at a time.~~Dorothy Day~~

This one has applications for my life right now, and for our weight loss journeys, our spiritual growth, our every day existence. Right now, it is all I can do to put one foot in front of the other. Everything I know about life, everything I believe has come into play these last few weeks, and the next months and years as I look to build a different life than I had expected to be building. But, that life will only be built one brick at a time. That's all anything is built by. Fortunately, for me, I have most of my bricks in place. I have a good foundation of friends and family, a strong belief in my Higher Power, bolstered by years of study and practice. I am blessed by these bricks, and blessed that they are available to me. One step at a time, that is all I can do, that is all any of us can do.

On Being Poor

Yes, I know I just took a vacation, but honestly it didn't cost much, and it was necessary for our mental health. The whole trip cost just a bit more than one months mortgage,and that would not have saved my house from foreclosure.Yes, I am aware that some would question the decision I made to take a trip, but honestly the need for healing, and the spiritual benefits far outweighed any other factors and were well worth it. We would not have made the trip if we had not had free hotel rooms available and a car that gets outstanding gas mileage!

Finding a place to rent has become an exercise in frustration. I am finding that no one will take a chance on low income people. Frankly, if I had the income level that is being required I would be able to afford the mortgage payments. I have no other debt, my car is payed for, I have no credit cards, and I am very good at living frugally. All I need is a safe place for my son and I to live.

I realize that most people would choose to live in a safe neighborhood, in fact most people take living in a safe neighborhood for granted. But when your resources are low, as so many these days, finding that place that feels safe is nigh on to impossible. So once again, I am seeking a miracle. Been there done that, but this morning I am wondering if my miracle quota has reached it's limit.

Wow, just typing this is making me feel vulnerable and I am not known for feeling vulnerable. I am know for my strong positive outlook. I am known for counseling others to remain positive and in the moment. So this morning I am looking at my circumstances,and trying to ignore them as I seek a solution.

Ignoring circumstance may seem foolish, but how many times are we in a position where we have to do just that? When talking to a landlord this morning I had to give a synopsis of our challenges, and even as I spoke I assured the nice man that we weren't quite as pathetic as we sounded, but I also was not surprised that he couldn't take the chance.. Yes, we have moved from crisis to crisis in recent memory, but honestly all we need is a chance to build on our healing and go forward. OK, so my husband was unemployed for 5 months, and then killed by a drunk driver on his way home from the first day on a new job, and then I fell at work requiring surgery, then fell at home breaking my leg, then lost my job, then my neurological disease worsened, then my autistic son became seriously ill and I got behind in the mortgage and need to move because of foreclosure. I do sound like a lost cause.

But I refuse to believe that. I refuse to believe that I won't find a safe place to live,and I refuse to believe that circumstances will keep us from being safe. I just refuse. Does that make me an idealistic dreamer? Perhaps, but these days our dreams for the future are all that we have to hold on to, and we do have dreams for the future-we just don't have a place to live. That puts us in company with so many people in this country and around the world. Yes, it is a scary place to be.

But as one of my mantras has always been "fear is the mindkiller", I have to ignore the fear and move forward. The only way to move forward is by continuing to have faith that we will find that safe place, that place where we can heal and reach for our dreams. Faith doesn't always make sense, but it is necessary. Faith means believing even when circumstance tells you different. Faith means that in the words of my son "Just because you know the truth doesn't mean you don't believe."

So yes, I know the truth, we have no place to live. We have major obstacles to finding a place to live, but we have to continue believing that this circumstance is not the end of the story.We have to continue ignoring the circumstance and not let the current obstacles keep us from looking forward. I know that somewhere there is a place for us, I just haven't found it yet.

Well, as the opening to this blog says, some days I may celebrate, some days I may whine and vent. But always, I am going to share my stories. This morning I needed to whine and vent, but in doing so I have found my positive outlook hiding in my story. Time to put one foot in front of the other and act out that faith!!

Peace and Blessings,

Mount Rushmore

There are amazing places in our country. One
place we should all try to visit is the Black Hills area in South Dakota. I think I could spend weeks here and never run out of things to do. Of course,no visit would be complete without a visit to Mt. Rushmore.

The first time we visited here was on our family honeymoon trip 10 years ago. It was the most amazing trip, and we decided then and there to return for our 10th Anniversary. Well, a lot of things can happen in 10 years, and Mr. Bill was killed beofre we could make good on that decision. But, my son and I decided that we needed to follow that dream, and here we are!

One of the more memorable parts of that family honeymoon trip was our visit to Mt. Rushmore. It was memorable for so many reasons. It is a most inspiring place. The four Presidents were chosen to represent the first 150 years of our country history. When you are approaching on the road, your first glimpse of the carvings will take your breath away, and standing on the view terrace of the memorial looking up at the mountain will give you goosebumps. But, on that trip, another life changing event occurred in my life. Walking up that path I experienced the first symptoms of RSD. I was walking towards the mountain when I felt the first excruciating pain that would become a constant in my life.  I had to find a place to sit down as I waited for it to pass. I remember thinking that I had never felt anything like it before-not when I had cancer, not when I broke my back in a car wreck, not when I was in labor for 72 hours. No pain I had ever felt came close to what I felt there in the shadow of the mountain. It passed in a couple of minutes, and I chalked it up to being in the car for hours, needing more exercise, etc. I had no idea then that the pain in my right leg that day would eventually become constant and spread to the rest of my body. That day it was just a momentary nuisance.

This trip I am using a walker, and taking my time, because that momentary nuisance is now a constant presence in my body. One of the several chronic pain conditions that plague my middle aged body. But, as I have mentioned before, the pain in my body is never allowed to win, never allowed to define who I am or what I choose to do. Of course, that is not to say that it hasn't changed the way I do things. So, me and my friend PurpleWalker,were at Mt. Rushmore again yesterday, walking up that same path where I met RSD for the first time.

I chose to let my son explore on his own for a bit as I sat and relaxed in on the view terrace. Soon, a young woman came to sit near me as she caught her breath. She asked about my walker, and during the conversation she shared that she was recently diagnosed with breast cancer. We talked about attitude being the key when battling any problem. I shared some of my health history, and assured her that she was more than her disease, and that her disease could ravage her body but that it could never steal her spirit. We spent a sweet half hour sharing, and I believe it was good for both of us.

Healing comes. Healing comes in its own time and its own way.Spirit uses places and people to bring the peace that is necessary for healing to take hold. Spirit is strong here in the Black Hills, and a few cleansing tears have fallen, but the opportunity to encourage the young cancer patient was truly a moment that could only have been orchestrated by Spirit.

I have been feeling useless lately. I have felt like a failure, that I have failed my beloved husband by not being able to keep the house he was so proud of buying for us. I have felt that I am failing my son because our finances are so unstable. Choosing to make this trip was difficult, after all, my house is in foreclosure. This trip is costing roughly the equivalent of one mortgage payment. Not enough to save our house, and honestly I think we are receiving a better return on the money! Yesterday I was able to encourage a stranger. I was able to say to her that cancer is survivable, I've done it. I was able to say to her that pain does not define you in any way, and that you must believe that you can heal. You must hold on optimism and be open to the lessons that Spirit will arrange for you. I felt the healing taking place in her, but more importantly I felt healing happening in me.

I am not a failure as long as I am open to the urging of Spirit, as long as I can be where Spirit can use me. I am not useless. My diseased body is not who I am, and I may have to do things differently, but I can still manage to be where Spirit needs me to be. I am able to persevere and be available for healing. Someone else's, maybe, but my own for sure!!!!  

Detour

Lately life is like the lyrics to that old song...

Detour, there's a muddy road ahead, detour
Paid no mind to what it said
Detour, oh these bitter things I find,
Should have read

That detour sign

This week, the words really hit home as we are planning our healing road trip. There really are detours because large sections of the highway we would usually zip north on are closed due to flooding along the Missouri river. Now this flooding started months ago, and really should be clear by  now, but of course, the waters are taking their time to recede.Even after they recede, the road will need extensive repair. So, detour will be the theme of our first day on the road.

But, you know, it kind of seems a fitting way to start the trip. Life has been just one big detour after another for us.Just this morning, my son and I were checking maps and planning our route. Since we love road trips, we came to the conclusion that the worst thing that will happen is that we will see some places we have never seen before. Not an unpleasant outcome.

Last year, we inadvertently became part of a Homecoming celebration in a small southern town because of a detour. It was great fun actually, people were lining the street waiting for the parade to start, and everyone waved as we drove through. Pretty cool detour.

Now, in life, some of the detours aren't that pleasant, but as long as you keep heading forward, you manage to get through them, or around them. That is actually why we are taking this trip, one more step forward in our healing process. In my experience healing has never been a direct route to begin with. How many times have we had the flu and thought we were over it to be sick again a few hours later. Healing is a process. Not always a pleasant process. The fever that indicates our body is attempting to heal itself is often more uncomfortable than the original problem. But, it is something that has to happen, just like the inevitable detours along life's road.

Detours often make you think that you can't get there from here, but that is never true. Detours only mean you can't get there the way you originally planned. The original route has been compromised somehow, the road is underwater, or being constructed, but there is always an alternate route.Will it feel unfamiliar? Yes. Will it take you over roads you haven't previously traveled? Probably. But, as long as you follow the signs it will get you where you need to go, and once in a while you may find yourself being welcomed as part of a celebration you didn't know was taking place, along a road not to nowhere, but a road to recovery.

Just make sure you heed that detour sign!

Looking UP!

Finally, some good news. The Social Security people have decided that I am indeed disabled and eligible for benefits!! Thank you to all who have sent good thoughts, prayers, energies, and those who have helped financially. I don't know yet when or how much the benefits will be, but I am breathing a huge sigh of relief. Now to not have anymore utilities turned off between now and whenever the benefits begin!!!

More good stuff-I started writing a book in 2007. I worked on it, and figure I got about half finished before my husband was killed, and my life turned upside down. I have been working on it again. Not writing anything new, just going back over the things I wrote in the past, and changing a word or two. It feels like a huge step forward. This is from July 2007...

The quote for today... I am an indestructible fortress, I am an unassailable rock, I am a precious jewel. --Ancient Irish Prayer Ah, the Irish in me, I think that's where I get my strength. Now, I am not saying to you that I don't have days where I am nothing but a quivering mass of jello, but what I do have is an innate belief that I am indestructible. In fact, I am fond of saying, you can't kill me it's been tried.OK, so I know that is a slight exaggeration but most humor is. What I am saying is that I am strong enough to withstand what the world has to throw at me. We all are, some of us may not know it yet, and one of the things I try to do is to help people see this truth about themselves. If we believe we have the strength to take what the world is handing out, then we journey forth into the world in a much different manner. Our very presence changes. Our posture is taller, our countenance brighter. We shine like the precious jewel we are. Now where do jewels come from, with the exception of pearls, most things that we consider precious jewels come from the earth, from dirt and rock, created by great pressure.Not the most glamorous of beginnings So it would seem to me that the more the world throws at us, the more we manage to crawl our way through as more than a survivor, as a victor, the more precious jewel we become. Even pearls start out in an unglamorous place. Now as much as I enjoy an appetizer of oysters on the half shell, it isn't a pleasant thing to look at.But look at how that oyster reacted to an irritant that it couldn't get rid of, it surrounded that irritating little grain of sand, piece of debris, with beauty.And a precious jewel was created from irritation and probably a bit of pain.

Just a Big Ol' Girl

When I was growing up it wasn't a given that little girls would go to college and become anything they wanted to be.My father, in fact, forbid me to go to college. But, I couldn't remember a time when I didn't know that learning was my way out of a bad place.So, I schemed, and I worked out a way to get to college. See, my father was from a time when girls got married and had babies, he couldn't IMAGINE a world where girls didn't have a baby until they were in their 30's, or didn't get married until they were almost 50. But, I could.Other people's imaginations have nothing to do with your reality!


Sometimes I am my own worst enemy, we all can probably lay claim to that. I look at my circumstances, and I get frightened. I fail to see what others see in me, and so I occasionally need reminders that my reality is mine, and that even though things are hard right now, they won't always be this hard.


One of my issues is weight. Now I am just a 'big ol' girl'- as one of my four year old friends once described me. It's OK to be a 'big ol' girl' as long as you are working on being healthy. I am never going to be my cute little sister (oy, I can feel the email coming!) for one thing I am nearly a foot taller than her. For another, I have always been overweight, always. It is as much a part of me as my size 12 feet, my eyes that change color, and my blue fingernails-oh wait the fingernails is another story!


I do not have a major problem with my size, which I think you might have figured out from the title of my blog. I eat well, I exercise as much as I can, and I try to take care of myself. YES, I have some serious health issues, but not ONE of them was caused by my weight struggles.

I was thin one day in my life. It was June 28, 19mumble-mumble.The day I was born I weighed 5 lbs. 2 ozs, and was 23 inches long. A tall, s-k-i-n-n-y baby girl. My baby book lists my weight at my 3 week check-up as 15 lbs. APPARENTLY I got born and discovered that there are truly calories in the air just waiting for me to breath them in.

I have always been the Giant economy size in a trial sized world. Not an easy task as a child, but I got better at it as time goes by. I had to suffer through the well meaning mistakes of parents, friends, even doctors before I was able to decide things on my own. I remember being put on a diet at 6 years old. The doctor prescribed diet pills, which back in the 50's were as we all know,pure speed, methamphetamine. They didn't work, I stayed larger than the average child, but was very likely helped towards my abuse of drugs and alcohol a few years later.

Back in the 50's kids like me were an anomaly. I really was THE fat girl in my elementary school days. I was a giant compared to all of the other little girls, and there were some Moms in the neighborhood who would not allow their children to play with me. I was this freak of nature, and they were afraid that their kids would get hurt. I have forgiven them. My dad decided that vigorous exercise was not good for me, he was truly afraid that I might have a heart attack or something. Amazing the things that we didn't know then. My dad was honestly trying to protect me.

We have learned so much about nutrition and healthy eating since then. I remember seeing a Cook book from the late 1950's. In it was a chapter on dieting. It said you must never let the dieter feel full or satisfied. Honest, that is what it said. Apparently those of us with the genetic make-up to gain weight easier must be punished. Thankfully we have come far since then. Now we know that it is never about NOT eating, it is about learning to eat well, to come into a healthy relationship with food, and exercise to keep our bodies as healthy as we can.

So yesterday I went to my Weight Watchers  meeting. Now I am a long time Weight Watchers member, have lost over 150 pounds with the WW program and recommend it highly.You should feel free to look into it if you wish. I participated in the Weight Watchers 5K on Sunday, and posted here about that. So yesterday at our meeting, exercise was the topic.Actually the excuses we all use to not exercise was the topic. Towards the end of the meeting, my leader, the amazing Jenny, asked me to speak about my health challenges and why I thought participating was so important to me. Now, I am NEVER shy about speaking in public. [if you need a  motivational speaker, let me know!!] so I shared a bit. 

As the meeting ended and I  made my way to my car, several members stopped me and thanked me. They told me I was an inspiration. "Thank you," I said, "but I am just a fat lady with a walker." It is humbling to be told that your struggles inspire someone else.I have had a chance to think about what they said to me, and isn't that what a storyteller does? So, thank you, if I can inspire you to think about getting healthier along with me I am grateful.If I can help you realize that your reality is not limited by anyone else's opinion, or anyone's imagination but your own, then I am truly thankful. Life is one choice after another, and if sharing some of my choices, the good, the bad, the ugly, inspires someone else to think about the choices they are making, then I have the inspiration I need to continue sharing. I hope I can help you imagine a world where you are all you want to be.

This is me and my WW leader, the amazing Jenny at last year's WW5K walk. She truly inspires me, and I thank her for that often!!

Peace and Blessings,

The Fat Lady!

Monday, Monday..

Yesterday, my friend Susan and I loaded up my purple walker  and headed out to join over a thousand other Weight Watcher members for a 5K walk. It was a beautiful morning, a bit humid perhaps, moisture left over from a night of thunderstorms. I LOVE the air after a thunderstorm, clean and charged with all of those wonderful ions. Refreshing, energizing. We headed out early, so I could find a close in parking space. Susan's husband thought that was ridiculous seeing as we were going there to walk. But, he has no idea how I suffer, so I forgive him! I managed to walk almost a mile I think, my friend did the whole 5K. I am so proud of her!

I am proud of me too. No one expects me to participate in these things. If you know me, you know that I am only able to stand or walk for a few minutes without my pain level rising to excruciating heights. But, as I explained to someone yesterday, even though it required extra medication, and I would need to rest today, doing these things is the difference in living life on my own terms or allowing life to live me. I choose to live life to the best of my ability, planning for these days when I expend everything I have to do something out of the ordinary.Something that would be merely ordinary for someone else.

So, as I was resting yesterday afternoon with my legs up, listening to my son watch the Nascar Nationwide race, all of my problems became small as we watched the weather in our region turn severe. The death and destruction took place a couple of hours south of us. I waited to hear if my friends there were safe-they are-but so many lost their lives to the sudden chaos that is a tornado.

Tornadoes are one of the things you fear living here in the Midwest. They happen mostly in the spring and early summer. Although they can happen anytime of year. The tornadoes that I was chasing the morning I broke my back were on December 2. The tornado that touched my neighborhood last year while we were off vacationing to our heart's content was in September. Tornadoes strike fear into your heart no matter when or where you are. As well it should.

You don't see a black banner headline on the newspaper very often. It takes a major catastrophe, and the pictures of our neighbors to the south are frightening and sobering. There but for the grace of God kinds of pictures. Look, isn't that mound of rubble the restaurant where we had lunch with our friend? kind of pictures. And we shake our heads, wondering, why?

Why did so many people who were doing noting more than minding their own business, just coming home from church, or even sitting in a hospital room with their grandmother. Why did they have lose their homes, their friends or neighbors, or family members? There are no answers to the questions. Why them and not me? Why me and not them? No answers.

In the sacred Literature of the Hebrew Scriptures God says ..

I form the light and create darkness, I bring prosperity and create disaster; I, the LORD, do all these things.

So, not knowing why, we thank our Creator for creating order and chaos, and for knowing why it has to be this way. It has been told in ages past that all Power is supposed to be in balance and harmony. That there are two kinds of Power-one is the power of order, peace, serenity, contemplation, happiness and security;it's counterpart is the power of chaos,war, creativity, lust, ambition, and desire and that sometimes one Power is in ascendancy over another, until the balance is tipped.I do not know.

I think about these kinds of things constantly, but I do not know the answers. I know what I believe, I do not need anyone else to believe what I believe. All people believe things that someone else would consider crazy. So there it is, here we are, another Monday...

My Thoughts on the coming rapture...

OK, I am not a theologian, so I am not going to even worry about whether or not there is such thing as a rapture. I am not going to worry about whether or not that rapture is going to take place tomorrow. I honestly just can't think about all of that.But I saw a question on Facebook that we should all ask ourselves every day.

It doesn't matter what your religious beliefs are. Does not matter whether you have any religious beliefs. This question should concern each and every one of us, every sunrise or sunset of our lives.So here it is...

If you knew today was the last day of your life what would you do? How would you spend the last day of your life?

Recently I have been doing lots of paperwork as I apply for disability benefits. One of things I have  to do is describe what I do from the time I wake up until the time I go to bed. Wow, that is an open ended, intrusive, scary, really difficult question for me to answer. Think about it for a minute. Describe what you do from the time you wake up to the time you go to bed.My first thought was, I am not sure I want to think about it.Do I want some bureaucrat who is deciding whether I receive disability benefits or go to live in a shelter to know how I spend every moment of the day. MORE importantly...  Do I really want to know how I spend every moment of my day?

There are so many things for me to decide as I attempt to answer this question. First, what do I consider as the time I wake up and the time I go to bed. I have,among other issues, a chronic pain disorder, I do not go to bed and sleep for 8 hours. I sleep 30 minutes to 2 hours at a time, depending on my pain levels, my bladder needs, etc. When I wake up it takes me a while to get back to sleep. Am I sleeping in my bed, or my recliner, at the time? I switch from one to the other trying to get comfortable. If I am in the recliner I have a couple of pillows that I need to position, if I am in the bed I have 10-12 pillows that I use to position my body.SO, when do I get up in the morning? When do I go to bed? Already I have a problem with attempting to answer this question. Can you see why I received a cranky phone call wondering why I haven't returned to forms yet.

The issue of how I spend my day has been on my mind recently, so when I see the question on Facebook about how I might spend the day if I knew it was the last day of my life I have a frame of reference. But, as a person of faiht, I should have a frame of reference for this questioin anyway. My religious beliefs lead me to think I should be spending every day as if it were the only day I have left, and really isn't that true for all of us, no matter our beliefs?

I can state without any reservations that life can end in the blink of an eye. I know that you can be driving home from work and be killed by a drunk driver. I know from the experience of friends and relatives that life is a tenuous thing any and every day that we live it. So to me the answer to the question is that I must live every day of my life as if it were my last. I must choose to live even the most boring, mundane day as if it were all I have because it is.

So my plans for today are quite simple. I will spend time in prayer. I recently read prayer described as an act of service done for the sake of the world. When I read that it make me think about the way I choose to spend my prayer time (but I think that is the subject for a post of its own).I will spend time watching Nascar with my son. I will do a couple of loads of laundry. I will check facebook and the Weight Watcher's message boards to stay in touch with friends and family and read about causes and things of interest to me.I will work on a blog post or two. I will have breakfast, lunch, dinner, and several snacks.I will read the newspaper. I will attempt to finish the paperwork for that the disability determination specialists need. I will choose to attempt to do all of these things with a positive attitude. I will work on some issues with my Creator. Pretty much a routine day for me.

I know that every day could be my last. I hope that I am able to have another day tomorrow, but I have no way of knowing that I will. I make my choices knowing that every step I take is a step away from where I used to be, and I hope those steps are the right steps. Perhaps this is my last blog post, so I want to say thank you to those who choose to spend a few minutes of the last day of their lives reading what I am thinking about. I am humbled that you would choose to use that time reading something I write.

Oh dear, Mt. Laundry calls. Have a blessed day!

Storyteller

At this point in my life, my job has become being a storyteller. I share the stories of my life not to elicit praise, or pity, or anything, other than to share my stories just in case someone needs to hear them.My godson suggests that ..."maybe its time to embrace a new role as a storyteller...you've done it before, but this time the story will be your story. maybe the blog fills that need. or maybe you could write a memoir. just initial thoughts. seems like integrating all the parts of your life story and telling that story (realizing that there will be more chapters added to it as time goes by) might have some merit at this stage of development."


I have been considering what he wrote to me, and there were other things in the letter. But, the storyteller seems to be where I ma supposed to be. I remember the stories that my father told. Even as Alzheimer's disease took parts of his mind, he was still able to share his stories for quite a while. He might not know who we were or where he was quite a  lot of the time, but he remembered his stories until just a few months before the end of his life. I am not sure he didn't still remember them then, he just had lost the ability to communicate them.

My favorite auntie, you met her in the Lemon Drop post, was a story teller. She loved sharing her stories with us 'younguns'. She did not share some of them until we were adults, old enough to see more than one side. She answered questions, and she loved us all. So the job of storyteller is a proud one in my family, and I am enjoying thinking about which stories I should be sharing.

Integrating the parts of my life as a storyteller will be an important exercise for me. I have always thought of the different parts of my life as different lives.I will often say things like "that was from my life as an actress, or that was a hundred years ago in my life as a designer, or during my life as a news director" But the truth is they are all from this one life. This one amazing, interesting, frustrating, scary life that I have been blessed to make my way through.

Are you wondering what the photos are? Well, that is a pottery representation of a storyteller. It looks very much like Native American pottery representations of a storyteller. But this pottery sculpture was crafted by an 8 year old autistic child. She sits on a shelf with some other sculptures created by the same child. You know how you can see something every day and then one day you SEE it? That is what happened to me this morning. I was dusting her shelf and all of a sudden in my head,"that's his storyteller" literally boomed and echoed. 

So here we are, the storyteller. Notice she has multiple children sitting on her ample lap? Well, she does. I am not a very good photographer, but she is an amazing representation of a storyteller. I am blessed that this part of my life I am meant to be a storyteller, and I thank my Creator for showing that to me. Sometimes when we least expect it Creator will remind us who we are, why we are, and where we a going.

So, I will be trying to share my stories more regularly. They will be interesting or boring, but they will be my stories, or maybe my fathers stories or my auntie's stories, but they will be our stories and  Stories exist to be shared.

                                                 ###############

p.s.This is hard but I honestly feel Spirit pushing me to ask you to please notice the paypal button. I ask humbly that you consider asking Most High if you are supposed to share a blessing with us. We have several needs right now...a tank of gas, the co-pay for my doctor appointment this week...approximately 300 dollars to keep the electricity and cable on. The cable includes our internet, phone, and TV for my son. We are trusting Most High for provision during this difficult time in our life, and would just ask that you seek God's heart on whether you are meant to be part of that provision.

Mothers day

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 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. Amazing how traditions are formed,and how important they become in our lives.

HAPPY MOTHER'S DAY to all of my followers and readers. 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 shines brightly in the sky, grandmother oak tree smiles down on me as I sit on the deck next to my orange tree.An 8 foot tall reminder of the faith of a small boy. I choose to feel the love and miracle in a 3 sentence conversation with my autistic young man.Now there is a gift worth treasuring. NOT that I didn't treasure the ink pen all those years ago, in fact I still have it. But I will treasure the ability 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 not feel silly because I was touched by the Mothers Day greetings of a race car driver as he was interviewed in victory lane last night. I will feel the gifting. I will not feel silly that  I wept like a child when I was clicking through the photos that my little sister posted of her incredible beautiful daughters and grandchildren. I wept with joy at seeing her gifts, knowing that she and I are both wonderfully blessed and fortunate Mothers. I felt so close to her as I looked into the eyes of her grandchildren.

I choose to see all of these things as gifts and blessings. Because they are. Being able to share the gifts and blessings of others is definitely a choice, and I 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 and pray asking Most High to bless them. Recognise the gifts all around us, thank our Creator for the sunshine, or the rain, or the rainbows. If we are Mothers, thank you Most High, we are humbled by the gift of Motherhood. Thank you Most High for the gift of our mother. Happy Mothers Day to those who need to hear it.

There is a place in all of us that needs to know we belong. Thank you Most High that I know I belong to you. Help me to share that knowledge with all who know me, or have opportunity to see me in my daily life.Thank you that on this Mothers Day I can receive the gift of knowing that I am a child of a Creator who is Mother, Father,related to all, no matter how they believe. We are honored and humbled by the gift.We may forget to say it, but we are grateful.

Happy Mother's day, Most High. Thank you for the choices you provide every day.

A Glimpse of one part of my life...

I was sitting downstairs in what we call "The Tropical Getaway", which is in reality just the corner in the basement that my sweet husband fixed up just for me. It's where I go to meditate when the weather is wet, or winter and I can't get outside to my deck. But I digress-I was sitting down there meditating, and my mind was wandering around the issues of my becoming disabled.

I remember the exact moment I first felt the excruciating pain of RSD. RSD stands for Reflex Sympathetic Dystrophy. Also known as CRPS.Anyway, according to the National Organization for Rare Diseases:

Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, 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.


The symptoms of reflex sympathetic dystrophy syndrome typically begin with burning pain, especially in an arm, finger(s), palm of the hand(s), and/or shoulder(s). In some individuals, RSDS may occur in one or both legs or it may be localized to one knee or hip. Frequently, RSDS may be misdiagnosed as a painful nerve injury. The skin over the affected area(s) may become swollen (edema) and inflamed. Affected skin may be extremely sensitive to touch and to hot or cold temperatures (cutaneous hypersensitivity). The affected limb(s) may perspire excessively and be warm to the touch (vasomotor instability). The exact cause of RSDS is not fully understood, although it may be associated with injury to the nerves, trauma, surgery, atherosclerotic cardiovascular disease, infection, or radiation therapy.

But back to what I was thinking about! I remember the exact moment I felt that first excruciating pain. We were on our honeymoon! Our honeymoon was a family affair. Combination dream vacation for our son, and wedding trip/honeymoon. We had planned the trip for a while, it was our son's dream to visit South Dakota and Mt. Rushmore and Crazy Horse monuments. So, we saved up and planned our trip. Mr. Bill surprised me with wanting to get married while on the trip-but that's another story for another time. This story is about living with pain, unending, excruciating, disabling pain...every hour of every day for the rest of my life.So there we are at Mt Rushmore during the first week in August in 2001. Walking up the steps to the entrance of the Mt. Rushmore monument this pain, something I had never felt before, went from my lower back through my hip and down my leg to my knee. It literally stopped me in my tracks. I had to find a place to sit down and catch my breath and wipe my tears. I think back now on that moment and am surprised at what a memorable beginning -at least for me- to a strange and difficult journey.The pain only lasted about 2-3 minutes that first time. It didn't return while we were on the trip, and so I chalked it up to being overweight and out of shape.

We had an amazing incredible trip. The Black Hills are 'take your breath away' beautiful everywhere you look. You can feel the sacredness of the ground you stand on with every step you take.We cherished being able to make that trip. We got home and life goes back to normal after vacation. You go back to work. That first few days is always a chore. Especially when you have been someplace as incredible as the Black Hills. Your mind wants to be back there. So a few days after we got back I was at work, and the pain happened again. Took my breath away, tears coursing down my cheeks. Then it started happening every day, several times a day. This was something I couldn't ignore any longer. I talked to Mr. Bill about it. Told him what was going on with my body, and made my first appointment with my primary care doctor to see if he could tell me what it was and how to fix it.By January, the pain was constant, and I couldn't walk without help. So I spent the next 7 months on crutches, visiting doctor after doctor, trying to find out what was wrong with me. Of course, there was a doctor or two that just told me it was because I was morbidly obese, and if I lost weight it would go away. I had been losing weight, but it is a struggle. I usually walked every day, but since that wasn't an option anymore, losing weight had become really hard. So, that January I had also joined Weight Watchers.

Then there were the doctors who treated me as if I were just imagining things.The doctors that thought I needed to have back surgery, the doctors that put steroid injections into my lower back. NOTHING we tried gave us the answer, and the pain continued, getting worse every day.There is really no way to describe the pain of RSD. There just aren't words in the language to give you a picture of how bad this pain is. Fortunately, after going through a half a dozen doctors, I met my neurologist. Nine years later he is still the doctor that directs my care. I often refer to him as my 'beloved' neurologist. In addition to him I also see a pain management specialist.

My 'beloved' neurologist was the first doctor who told me I wasn't crazy, I wasn't imagining things, there was a name for what ailed me and we could not ever cure it, but we could manage it. That first time I met him,he was performing a nerve test ordered by a different doctor. The doctor that ordered it told my husband and me that it would show that there was nothing physically wrong with me, and then he would refer me to a pain psychologist. When the neurologist came in to perform the test, he asked me questions. He talked to me about  my body's response to the test-I wasn't sure I would live through the pain- and he told me to go home and look up RSD on the internet.

When I had recovered from the test in the next day or two, I did exactly that. Looked up information about RSD. I immediately saw that I had all of the symptoms of this terrible disease, and the information I found was really scary stuff. So, I made an appointment with the neurologist, he studied my test results from all of the previous doctors, and diagnosed me with RSD. He literally changed my life. It had a name, other people were  living with it, and I wasn't just an overweight,middle aged, hysterical female.I had a disorder of my nervous system. There were ways to manage the pain, but I would never, ever again be pain free.

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. Mr. Bill and I switched the side of the bed so that he wouldn't brush up against my bad leg.The pain colors every moment of your life. The PAIN become almost another member of the family. Can we plan a family outing? Depends on how Mom is feeling.

 Until the summer of 2009 I worked a full time, standing on my feet, walking all over the store job. It was a job that not all healthy people would have had the energy for. I loved my job. I kept working as long as I could. I gave it my all. The morning before Mr. Bill was killed, we discussed that I wasn't going to be able to do it for much longer. We discussed how to achieve my being able to cut back my hours, how to achieve financial stability while I was working less. It was something we were going to talk about and plan for. We never had that opportunity.

Since then, the disease has spread. Originally the pain was localized to the area from my hip to my knee on my right leg. Now, the pain is from my waist down, both legs. Lower back to toes. The pain is managed most days, but there are days that it simply is more than I can handle. When my son and I took our trip last fall I had to schedule a day every two days for resting and recovering. The pain complicates every single aspect 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. It was easier when it was a smaller part of my body. But, it has spread, and you work hard to manage.

So some days are better than others. Some days I just need my cane, some days I need my fancy purple walker, some days it is a good thing I have a wheelchair. It is one of those invisible diseases. I don't look sick, you can't see what I am dealing with. But it is there, unimaginable excruciating pain. Changing the skin, changing the muscles, changing your very existence. You never know what someone else might be going through.

I am sharing my stories so that someone else might be encouraged. You really can learn to mange something as awful as RSD. You can learn to deal with whatever life throws your way.You can thank your God for a good day. You can pray blessings on the cranky guy that yelled at you because he decided you didn't need that close to the door parking place. You can learn to manage the pain with medication, good doctors, and with the meditation and breathing that you use for so many things.

Faith is so important in learning to manage something like this.Some days you might be stuck in poor pitiful me mode, but Most High 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?

Feeling Surreal Today

In the last few weeks, I have learned something about myself.  Due to circumstances beyond my control, I am forced to apply for disability benefits and medicaid for my son and myself. I have put it off far too long, and now my financial problems are so drastic because I did. My son and I will in all likelihood lose our home because of my recalcitrant behavior. I find that all of the things I read and see my conservative friends post about 'entitlements' and programs to help the poor now apply to me.

The application process for disability is not easy, in fact I am still working on one of the parts of the application-3 days later. I have already had 3 phone interviews with 3 different people, and there is much more to come.

I have spoken to my therapist in the past about learning to accept the fact that I am no longer able to work. It is so difficult to admit that you are not able to provide for your child and yourself.In our culture we are so often judged and valued by what we do for a living. I was very proud of my job. I gave it 110 percent every day, and I was very good at what I did. So, now, since I no longer have the ability to stand on my feet or use my hands I feel useless. I spend time writing, and trying to figure out what it is I am supposed to do.

The day Mr. Bill was killed, we sat on the deck and had coffee together before I went to work. We discussed our hopes and dreams, plans for the future. We were aware that I would not be able to work at the store forever. So, we talked about me taking courses to do a totally different type of work.We were  so happy that morning, planning a new direction for our life. Then, on his way home from work that night, a drunk driver killed him, and my life has been spiraling out of control ever since. So here I am, no money in the bank, plowing through the paperwork for disability, hoping that there is a way to save our home, and support us through the next part of our life.

Sometimes, I wake in the morning and I am so confused. Who am I? How did I get here? One of my favorite quotes says "Shame on the body for breaking down while the spirit perseveres~John Dryden" So, do I blame my body for breaking down and taking away my ability to work? Do I blame the drunk driver that took my husband from me in the blink of an eye? Do I blame the company I worked for because they terminated me instead of working with me when I became disabled?

I think that I must move forward, accept that my body has broken down. Now I must find a way for my spirit to persevere. Now, I must swallow my pride, and apply for benefits to help support my son and me. Now I must allow the forgiveness that I so often and so easily extend to others to apply to myself.

In this age of social networking and blogging we are privvy to more information about our friends than we used to be. So, now, I can see on my fb newsfeed the religious and political thoughts of hundreds of people every day. I see my conservative friends posting things that lead me to believe that they will look down upon me as I apply for benefits. It hurts to be in this position.

It hurts to do things like adding a paypal button to your blog, hoping that someone might see it and feel led to share. It wasn't that long ago that I was sharing with others. It hurts to feel hopeless and to feel like you are failing in your role as a parent. And so you add these feelings to the other things going on in your spirit, the grief, the pain in your body, the loneliness.  You seek to allow your Higher Power to work in you and through you and for you. Then you blog it and let it go. Surreal, yes, but these days what isn't!

Walking in Faith

Mr. Bill and I were engaged for 4 years. It took us one month to meet, fall in love, and promise to spend the rest of our lives together and 4 years for us to work through the issues that needed to be worked through before we made it to the altar. Well, if a table in a coffee shop in a county courthouse can be called an altar.

Now, it would be lovely if I could say that all of the issues were his, and that I was issue free. It would be lovely, but it would be untrue, and the truth is important to me!! Mr. Bill had what we referred to as the practice wives. 3 of them. I was the 4th Mrs. Bill! Mr. Bill was the first and ONLY Mr. Esther! We were in our late 40's when we met, so we had a  lot of miles between us, relationship wise, and those miles came with lots of baggage.Baggage that had to be opened and looked at and sorted through, with the detritus left behind us.

One of the things that is most surprising to me now, is the issue of independence. I was a very independent woman when we met. I had to learn to allow someone else take care of things. I had to learn that I could depend on someone. One of my major issues is that I do not ask for help. I have never been able to ask for help. I learned in my childhood that asking for help was unwise, and that there was no one I could depend on to help me. So, I grew up knowing that people were not to be depended on, not to be trusted. By the time I met my husband I was pretty much set in my ways.

So, Mr. Bill crossed the street, and we spent the next 11 plus years learning from and with each other. I learned to trust and depend on another human being. I learned that it was OK to allow someone to know me better than I knew myself. I learned to love and to be loved.

But, I am still learning to ask for help. I always think, right up to the last minute that I will come up with a solution. So, I put off asking for help until it's too late. I just know that God has a plan, and that I will hear from my Creator, telling me how to fix it. It has always worked that way.

I have always been blessed in my life. Even when times were tough, God has always provided for us. When my son was small, it seemed that we had miracle after miracle. I love to tell the stories of God's provision.

One of my favorite stories is the one we call "The toilet tissue story" We were down to our very last roll of toilet tissue. Now that seems like a really small worry in the grand scheme of things, but to a single mom raising a special needs child, sometimes its the small things that matter. We put the last roll of toilet tissue on the holder, and I knew that I did not have the money to buy a package of toilet tissue. I would  not have the money until the first of the month, and it was the 20th. 11 days from payday. So, as I placed that last roll of toilet tissue on the holder I just gave the problem to God. Every day for 11 days, I looked at that roll of toilet tissue, and every day for 11 days, that roll of toilet tissue appeared to remain the same size. Now I know that was not possible. I knew it wasn't possible while it was happening, but it never grew smaller. Until payday, when it seemed to go from full roll to empty roll in a matter of moments. I have shared our toilet tissue miracle many,many times over the years, and people look at me funny every time I share it. All, I know is that to this single mom, that roll of toilet tissue represented God's provision in an amazing way.

Another of my favorite stories from that time in our lives is the story of the Christmas Cards. As Christmas got closer and closer, I did not have the money to purchase gifts for my son. So, once again, I gave it up to God. The other moms at the bus stop would ask and I would tell them I was waiting for God to provide.Sometimes it is hard for people to understand that. When you choose to walk in faith, it often looks unrealistic to those around you. As the days of December counted down, I knew that they thought I was crazy. But, I just kept telling them that I was not worried, God would provide for my son to get what he had asked for.

 On December 23,  I walked to the bus stop to meet my son. It was December 23rd, and I still did not know how, but I knew that God would provide.On my way to the bus stop, I picked up my mail. There were 6 envelopes in the mail box that day. I carried them with to the bus stop at the end of the street, and as the other moms and I waited for the bus to come, I opened my mail. I opened a card without a return address, and in the card was $70 dollars in cash. The card was signed, A Friend. That was all. The other moms and I were so excited, as I showed them the card, and reminded them that I knew God would provide. Then I opened the next card, in the card was $70 dollars in cash. That card was signed simply With Love. I shook as I opened the last card. In the card $70 dollars in cash, signed Santa. Of course, I was crying tears of joy, and tears of amazement, as I was able to share with the other moms God's amazing provision.

So, here we are again, waiting for God to provide. I have had to overcome my issue of not being able to ask for help, a lesson that Creator has been trying to teach me for years. Mr. Bill tried to help me learn it, but he was killed before I got it. So, I am still working it out.

They turned off our gas yesterday, so we do not have hot water or heat right now. But the choice was between the gas bill and medication for my son, and to me the choice was obvious. I am a single mom again, a widow with a special needs child. My child is no longer small, but he is still my child, and we are still waiting on God's provision. Faith is a choice, not always an easy choice, but a choice nonetheless.  So, all that's left is for me to watch and see how long the roll of toilet tissue lasts this time, because I know that in God's time our needs will be met.

I'll let you know how it turns out!