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!

Once Upon a Time...

Didn't the Royal wedding recently make you think in fairy tales?

Once Upon a time, a long long time ago, in a kingdom far far away, the royal superintendents of schools were working out how to respond to the new young kings decree that we would educate our children better and use the best and the brightest to win the race for outer space. In a far away corner of the kingdom, a group of children, only 6, were identified as a precious commodity-geniuses.All of the schools in this part of the kingdom examined their children. Tests were taken, scores were analyzed, and 6, only 6, were deemed worthy. Among these special 6 were 5 males, and surprisingly to everyone, a female. Now  they expected to find  young males,in fact they expected to find more than they found. But in the end, after all of then inspections and evaluations, they were left with 6 young persons who fit the bill, and one of them was a female whose IQ turned out to be the highest of the 6. Well, That was just not what they expected at all!

The Royal Superintendent of the county of La-La land, decreed that the 6 special children would be the first students designated as "Gifted and Talented" and these 6 special children would be examined and analyzed for the rest of their years in school. They would be precious gifts to their districts and should be treated as such.

So, they decided to see if they could find out why these 6 were so different. They sent them to the hospital at the University. They tested them, they x-rayed them, they took their blood. For 3 days they had them in the hospital looking at them upside down and backwards. They never released the results to the 6. After all they were just children.What threy didn't take the time to ask was what the dreams and aspirations of the special children were. They really didn't care, they just wanted to be able to say that there were special children in the school district.

As the years went by, and the school district tried to educate the special 6, some strange things happened. Several of the 6 turned to drugs and alcohol. It seems that being different is very difficult to deal with for a young person. Since this was the first attempt to corral the intelligence, mistakes were probably made. Hopes and dreams were not important, and they tried to make the special ones conform to what 'they' thought they ought to be. It was no easy task.

The girl was probably the most different of them all. Not only was she the smartest one, she was the only girl, and she was different in many other ways. She was tall and obese and was treated as a freak by those around her. Mothers in her neighborhood often were heard calling their children in so that they wouldn't be able to play with her. She was so big, mothers were afraid the children her age might get hurt.

Then she was called names every day. Back in the late 50's and early 60's being fat was an anomaly. She really was The fat girl in school. So she was ostracized for being fat, for being smart. She knew the sound of a common ordinary word like 'smart' being used as a curse.

But children grow up, and graduated from school. The Royal Superintendent had no more interest in the 'special' children. They were sent out into the world to fend for themselves. They are all grown up now, parents, grandparents themselves. One of them died young, the ones who drifted off into drugs and alcohol grew up at long last and stopped abusing their bodies. They learned to be who they are, nothing more, nothing less, and that is OK.

Special wasn't all it was cracked up to be. Special was scary and lonely, and everyone wants to belong to someone. So the special children became grown-ups and discovered that being themselves was the most special thing they could be. Because when you learn to love yourself, others find it easier to love you. Being loved is all the special children ever really needed anyway.

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.

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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?