A Grand Plan

I've been experiencing great discouragement lately. It really makes me angry when I feel this way. I want to be a joyful person, not a mopey, melancholy individual. In living with chronic pain, I think that this is the biggest obstacle-the day to day battle of not giving up ground and relinquishing myself to the pain. It's a physical and spiritual battle.
I had surgery last October to have a spinal cord stimulator implanted to help with pain control in my legs. I approached this with as much optimism as I could muster, wanting to send nothing but "positive vibes" to my body to accept this newest soldier I've enlisted to help send my pain into retreat. But it is just one soldier, not the knight in shining armor I was hoping for. But-I'm still glad to have it in my stockpile of ammo to fight the battle with.
But some days, it's just plain too much. It's been cold and dreary, and my body is most definitely feeling old and weary. Pardon the rhyming. Old foes of depression and negativity are standing on my stoop, and I've become exhausted trying to keep them from breaking through the front door. But as for today, I've been given a gift. Sitting by a crackling fire, watching soft snow fall, and listening to my old dog wheeze a little in his sleep. Peace and quiet, content for at least this morning.

I've been reading my way through the Psalms, drawing on the strength that David found in his journey on this earth. He went through a lot, and I love him for that. He was never afraid to tell God about his fears, doubts, pain-you name it. David laid it all out there like no other. This brother also knew how to praise God too. Even in the middle of incredible pain and anguish.
I am drawing strength this morning from Psalm 139. Verses 13-18. Well known verses that I've read many times. But this morning part of my gift was to see something with fresh vision, just what I needed for the here and now of my life.

"My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes SAW my unformed body. ALL the days ordained for me were written in your book before one of them came to be."

These past years that have had a mulititude of pain and sorrow for me were already written down. God did not just know that I would experience all these things, they were even noted ahead of time. I think it may look something like this:

"In the years 2003-??, Sandi is going to hit a rough patch. She's going to experience some difficult days, a whole bunch of them. It'll be hard for her, but I'm going to be able to really teach her a lot during this time. Set a reminder, she's really going to need us then." -God

If God ordained these days for me, then I will accept them. It's not easy every day, but he knows what's coming next. He is here with me, just as he's been all along. It's ALL a part of his Grand Plan for me, and he already knows the whole story. There is a lot of peace in that. A lot of peace.

A Christmas Story

The all too familiar buff colored enevlope made it's appearance in my mailbox this past week. I get them every few weeks or months, a reminder of painful life experiences over the past couple of years. The deaths of my parents, 10 months apart. The appearance of the envelopes catch me off guard, though one would think I would be used to them by now, even expecting them. But for some reason, I'm still surprised when they show up.

The envelopes come from Angel Heart Hospice, the people that helped take care of my parents in the last months of their lives. The letters inside contain information to help me in my grief process, and give advice on such things as getting through the holidays. The last few have remained unopened; I already know what they say. Sometimes I am just not in the mood to read the contents. Death is a part of living, everything I am feeling is "normal", I know. But let's face it, death just plain stinks. No matter how much time goes by, you'll always miss those you love who aren't here anymore.

But this post isn't about grief. It's about Christmas and family. A Christmas Story. Not THAT Christmas Story. No Red Ryder BB guns, bunny suits or licking frozen flagpoles. (If you don't know what that means, you must go rent the movie, "A Christmas Story", immediately. You've missed out big time.)

This is a Christmas story about caring enough to walk into the messiness of the lives of others. It's a story about family.

December 9, 2007 I was traveling home to OKC from Austin, Texas. I had spent the previous two days at the bedside of my dying mother. I was exhausted emotionally and physically. I was ragged and raw. She had passed away as my brother and I held her hands the day before. I had not slept in about 30 hours, and all I wanted was to get home to my husband and daughter. Unfortunately, that particular weekend a major ice storm had hit OKC. Flying from Austin to Dallas was uneventful, but I knew the weather had been a possible problem in getting all the way home. Sitting on the runway in Dallas, ticking away the minutes, I began to have a feeling of impending doom. I was trying to stay calm, hoping our flight would sneak into the OKC airport before everything came to a complete halt. It was not to be.

The pilot's voice came over the intercom saying the words I did not want to hear. Dallas was as far as I would go that night. The OKC airport was completely shut down. Nothing was flying in or out. I sat for a moment as people around me retrieved luggage from the overhead bins and began to exit the plane. The flood of tears I had been holding back came out in a rush, and I began to cry silently but hard. Once it started, I just couldn't stop. Exhaustion and grief took over and I tried to focus on what to do next. We were being given information about ticket vouchers, hotel rooms that might be available, etc. It was too much to absorb.

I finally collected my things and numbly walked off the plane and into the terminal. Feeling very lost, I tried to figure out where to go. I finally just followed the other passengers I had seen on the plane and found what looked like the line to stand in to get tickets for possible flights the next day.
I noticed that the people around me were giving me plenty of space. I was sure I looked like a woman on the edge. And I was. I was aware of Christmas music playing in the terminal, and people in a hurry everywhere, many carrying gifts wrapped in bright holiday wrapping.
I was alone in the line, people in front and back of me trying not to look at me, not notice the tears or otherwise acknowledge the hysterical woman standing in their general vicinity. Who could blame them? I didn't want to talk to anyone anyway.

I was next at the ticket counter, and I actually felt bad for the young man with the wide eyes and nervous look on his face, I'm sure trying to recall his training on handling hysterical passengers. I tried to catch my breath, and told the guy I was "really okay, I just needed to get home. My mom passed away yesterday, that's why I am upset."
Compassion filled his face and he actually handed me a box of kleenex and told me to keep it while he tried to hurry and get me my voucher. He finally finished and I wandered around numbly until found a place to sit while I sorted out my options for the night.

My cousin David and his wife Kelly came to my mind as I remembered they didn't live far from DFW airport, in Grand Prairie. I called David's sister since I had her phone number in my cell phone. She quickly gave me David and Kelly's number, and I called their house. When I explained my strandedness, David immediately got in his car to come to my rescue. I finally relaxed a little, at least knowing I had a plan and help was on the way. But still, I could not stop the flow of tears. I sat in the baggage claim area, looking out the window, pulling tissue after tissue out of the box, waiting for my cousin.
I was slightly aware of a group of people with lots of luggage and laughter coming into the area where I was sitting, discussing who was going to get cars, etc. Someone sat down in the seat right next to mine, but I never averted my gaze from the window, knowing that I looked a mess, and not wanting to see any of the wary looks I was sure were coming my direction.

A woman walked towards my area and stopped in front of whoever it was that had sat down next to me, and said "Is everything okay here?" I heard a female voice reply, "I don't know. But she's breaking my heart, I've been sitting here praying for her." I turned to see a sweet, gentle face watching me, tears silently streaming down her face. I was stunned to realize this complete stranger had been sitting right by me for several minutes now, and had not only felt compassion for me, but had been praying for me. Now I really lost it. A gentle hand rested on my shoulder as I apologized for my emotional state and told the two ladies about my mother's death the day before. The woman who had shown such empathy for me said, "I knew it. I knew something was really wrong. Do you have somewhere to go?" I explained that help was on the way, and she said "Well, we'll be your family until your cousin gets here." Wow. Family? Complete strangers willing to not only care enough to step into my distraught world, but willing to stay there and be a comfort to me for as long as I needed.

As it turns out, Darra and Darlene were sisters-in-law, just returned from a family vacation someplace warm and tropical they said. I then noticed they were in shorts and sunburned. They really became my family for the next 20 minutes or so. They sat on either side of me, asked me my name and asked me questions about my mother, and listened intently, not afraid of my tears and sorrow. They stepped into my grief with me. They prayed with me. They were my sisters for a moment in time.

I saw my cousin pull up, and as I gathered my things, Darra and Darlene gave me loving hugs, wiped my tears and said goodbye with promises of continued prayer. They waved goodbye through the window as I climbed into David's car.

When I think of their kindness, even now, I get a lump in my throat and think about what they were willing to do that night. They were in a good mood, just back from a nice vacation. How easy it would have been to look the other way. Why finish their vacation at the airport with a obviously very upset woman. They had no idea what I might say, or what reaction I might have at their stepping into my space. But they were willing to take the risk. They were willing to listen to the voice of God prodding them to get involved. I wonder if I would have done the same. I'm ashamed to say I might not have. I might have chosen another seat, looked the other way and pretended not to notice a stranger's tears.

Darra and Darlene not only comforted me that night, they changed me. When I see a person enveloped in sadness, I'm less afraid to approach, to find out what is causing them pain. Isn't that what Jesus did? Approach complete strangers with the love of God? Unafraid to get involved? It's unlikely I'll ever see Darra and Darlene again. But I will always remember how it felt to have two sisters come into my life when I needed them the most. And I hope I can be someone's sister when the moment calls for it.

Keep your eyes open for someone you might bless this holiday season. Someone who needs the touch of family. You might just be the one.

God used to be a smoker

For a period of time in my childhood, God smoked Marlboro cigarettes. I know this for a fact. And it was okay, really, really, okay. When I was growing up, it seemed that most adults around me smoked. Even church people. I remember thinking absolutely nothing about the groups of men, elders and deacons all, standing around just outside a church building entrance smoking and talking in that spot of time between Sunday School and worship. No one judged that as a vice in the late 60's and early 70's. But maybe that was true only in the south, or in east Texas, I don't know. But it was common. It was my world. Both of my parents smoked, as did my grandfathers for a time.

But God, a smoker? Bear with me.

Sometimes children develop irrational fears for periods of time and I was no exception. When I was around 9 or 10, I developed a fear that someone would break into my grandparents home and kill us all during the night. I have no idea how or what caused me to take up that scary scenario. I had stayed with my grandparents many, many times and loved being with them. When school would be out in spring, I often went to my grandparents home right away and would stay for at least several weeks if not the entire summer. My mother worked, and I loved being at my grandparents, so it was a sweet deal for all of us.
They lived in a 12 x 60 mobile home in a small east Texas community where my grandfather was also the preacher at the small church of Christ. Although the white and gold mobile home wasn't much to look at, it was in a beautiful setting, in the middle of four huge pecan trees. At night, pecans would occasionally fall on the metal roof, and rainstorms could be pretty noisy affairs too. But none of that scared me. I don't remember exactly when or why my fear started.

I would lay awake after going to bed, listening to my grandparents at the other end of the mobile home talking, brushing teeth and gargling Listerine, and I would try so hard to fall asleep before things got quiet. That hardly ever happened. My grandparents always kissed goodnight, and I would hear that little smack, then the house would fall silent. Then the dark fear would creep up, filling the bedroom. I was afraid that someone or several someones would come in the front door between my bedroom and my grandparents and do horrible things to us. Maybe even kidnap me.
It wouldn't take me long to start getting spooked, and on many occasions, I would go and stand next to my grandmother's side of the bed until she woke up. I probably scared her half to death on several occasions. She would inevitably walk me back to my room and lay down with me. Then I would be fine. What I didn't know is that my grandmother had problems of her own with insomnia and once I woke her up, she often did not go back to sleep. My grandfather eventually took me aside one day and told me in no uncertain terms to NOT DO THIS ANYMORE. He was worried about my grandmother's health, and I am sure was ready to ship me back home.
I knew he meant it, so there I was, stuck with my fears and vivid imagination in the middle of the night, trying to figure out how to cope.

Isn't that often the case with all fears? Thoughts become fears when we cannot figure out how to allay them or slay them. Growing up in a family that believed in what the Bible said, I knew that I was supposed to give my fears to God. He was big enough to handle my vivid imagination, but I could not figure out for the life of me how to just "give" my fear to Him. It's tough even today, as an adult.

So my 10 year old self lay awake many nights, waiting for the man or men to break into my grandparents home and do away with us on the spot. On some dark nights, I even made my peace with the whole thing. I was ready to die. Come and get me. I just hoped it wouldn't hurt much. Seriously, I was that afraid, and it was that real to me. Funny thing is, I don't think I ever told my grandmother just what it was I was afraid of, just that I was scared. Kids are weird.

On one of those fear-filled nights, I had lain awake until about 4:00. I wanted so badly to go wake up my grandmother, but I knew I just couldn't do that anymore. I was also mad at myself. I was 10 years old, not 3. Why was this happening? I got up and bravely peered out the window into the dark east Texas summer night, trying to convince myself to not be afraid. That was a huge step on my part. I had always imagined a face peering right back at me if I looked out the window. No faces peered back, but I did see something. A light. A soft, warm and comforting light. When you are afraid of the dark, even a small light can bring blessed relief, can't it? The neighbor's porch light was on. My grandparents' nearest neighbors were another elderly couple that lived in a big old country house that had a screened in porch on one side. It was maybe 50 yards away from my grandparents home. The couple's granddaughter was my best friend, and I even called them Memaw and Pepaw, like she did. My grandparents had other "grandparently" names, so it all worked.
I saw the lit up screened porch, then saw that Pepaw was sitting in his chair. What?? Someone other than me was awake? I was astonished. But there he was, big as life, drinking a cup of coffee, and smoking a cigarette. And Pepaw was big. Well over 6 foot, to me he looked 10 feet tall. I wondered how long this had been going on. This pre-dawn cup of joe and a smoke. Wow. He just sat there, in the quiet, looking out over the big yard between the houses. Sipping and smokin'. I came to the realization then that all of my fear had vanished. Gone, kaput, slayed. I stood there awhile just watching him, and finally crawled back into bed, and was sound asleep in about 3 minutes. It was the most amazing thing. All of those miserable nights put to sleep at my discovery of a big man keeping watch. From that night on, when I was afraid, I would relax knowing that Walter "Pepaw" Handley was keeping watch. I can still see him in my memories, sitting on an old chair, slowly drinking coffee and a wisp of smoke drifting up in the night. I eventually figured out that he went to bed at 8 o'clock every night, and liked being up before daylight. I'm sure years of country living gave him that body clock. He never knew what he did for me. His presence dashed away some of my worst childhood fears.
I'm not afraid of the dark anymore. At least not much. Okay, only on occasion. My fears now are more real than my imagination was at 10. I've had some fears in life come to pass, but most have not. In my journey of living with chronic pain, I've had to deal with many new fears. Will I have to deal with severe physical pain the rest of my life? Is it going to get worse? Many times I've approached treatments with a lot of fear and apprehension. I had surgery last week that I was pretty afraid to have, but I got through it and have some real, tangible hope for the first time in awhile.
I have had many, many, dark nights awake and afraid. God doesn't come anymore and calm me as an elderly east Texas grandpa smoking on the front porch in the middle of the night. I talk to him now instead of peering out the window at him. I tell him lots of things, and he calms me and dries my tears. He is still the Big Man keeping watch. Amen.

"He who watches over you will not slumber." Psalm 121:3

Becoming Aware of Life and Death, Pain & Suffering

The summer I turned 14, my parents along with my aunt and uncle, were involved in a horrific car crash. In a split second, they became the epicenter of a wreck that they all amazingly survived. I remember that night still. In detail. The phone call, the eeriness of the long night and the growing up I did.

At the time, we lived in Grapevine, Texas and my parents had decided to go out to eat with my mom's sister and husband that evening. I stayed home for an evening spent talking on the phone with a friend, reading and starting to feel spooked as the evening became very late and my parents had not come home. Life before cell phones. How did we do it?

Finally, sometime close to midnight, my dad called. He very calmly told me that they had been involved in a "little" accident and were at the hospital. He would soon be home, but mom would need to spend the night. Everything was okay. Nothing to worry about. Right.

When I finally heard the key in the front door, I ran down the stairs to meet my dad and get the real details. (which came slowly in the days ahead, in bits and pieces.) He was moving carefully, and looked very worn and tired. He moved toward the stairs and told me to go on to bed and he would take me to see mom the next day. She apparently injured her leg and the doctor wanted to keep her at the hospital.

I headed to my bedroom on the second floor of our house and Dad went the other direction towards their bedroom but in a couple of minutes called out to me. I entered their room to see Dad standing in front of the bathroom mirror, shirt off and tossed aside. It was then that I saw the blood. Little specks all on the inside of his shirt, in the back. Then I looked at his back and saw dozens of little tiny cuts. In his hand were a pair of tweezers. "Sandi, I need your help. I have some little pieces of glass in my back. Can you pick them out with the tweezers?"
I noticed stitches in his elbow, a result of his left arm going through the drivers side window.

I remember a sick feeling in my stomach, wanting to help, and suddenly feeling more like an adult than a child. Of course, I was the only other one in the house, so he had no one else to turn to. But still. He asked me, and I wanted to rise to the occasion. I moved into the light from the vanity, picked up the tweezers, slowly and meticulously began to remove the little pieces of glass. He winced each time I managed to grab hold of one of them and remove it. I remember the warm feel of his skin, the awareness that he was sweating a little (I was too), and clinging to the edge of the sink. The smell of gasoline, antiseptic used to clean his elbow, mixed with vague remnants of what he usually smelled like- cigarettes and Brut. (this was the 70's, after all!) While Brut and cigarettes may not sound like a fragrant delight to the senses, to me it was my dad. That was the familiar, and it wasn't distasteful to me.

I remember that night of becoming aware of my father's humaness and mortality. He was blood, flesh and bones. Capable of being hurt badly, and as I was to find out the next day, so were my mother, aunt and uncle. I was scared and fought back tears at the realization that they could have died that night. My dad had never been injured like this before, and was very rarely sick. And I do mean rarely. Until then, the most I could remember ever happening to him was getting poison ivy in the summer. He had never spent a night in the hospital, and even after this wreck, he would reach the age of 77 before he ever had to be hospitalized. He was a tough little man.

Finally, I could find no more pieces of glass to grab hold of, and we went off to bed, exhausted-the two of us. It would take months for all of the slivers to work their way out of the skin of his back.

Morning came and I heard Dad up and making coffee. We dressed to go see Mom, and I noticed how Dad seemed to move in slo-mo. He had to have been tremendously sore.
On the drive, I began to get snatches of information about what really happened, and also was informed more about Mom's injuries. Much more serious than what he let on, naturally.

They had been in our green Mercury Comet (with a white vinyl top-a very cool car) going to eat at some favorite place. It was lightly raining in Dallas that night as they drove along LBJ Freeway. Dad was driving with Mom in the front, Aunt Mary and Uncle Hugh in the back. At some point, a teenager driving a large old boat-of-a-car, was trying to enter the freeway from a curving entrance ramp. He was driving too fast, as teen boys are prone to do, and lost control. My dad didn't see the car until it became airborne during a skid, and came sailing over a small concrete divider between the ramp and the freeway. It flew through the air, heading right at the Comet carrying my parents. My dad slammed on the brakes and yelled for everyone to hold on, they were about to crash. The car hit them, and they were spun around, coming to a stop, perpendicular to oncoming traffic.
My dad looked up in time to see with horror that coming right at them was the cab of a large semi truck. Only by God's grace was it not hauling a load that night. If it had been carrying a full load, this story would have had a different ending. My dad's eyes locked with those of the driver as the truck slammed into the Comet. Dad said he would never forget the look on the truck driver's face, despairing and apologetic, I'm sure thinking he was about to kill everyone in the car.

No one died that night. Seeing the mangled Comet later in the wrecking yard, we would all walk away shaking our heads in amazement that anyone survived.

Uncle Hugh's skull was smashed on one side, requiring a large section of it to have to be removed. Incredibly at the accident scene, he talked to the EMT's, saying he was really okay and actually rode to the hospital in the front seat of the ambulance with my mom on the stretcher in the back. Dad and Aunt Mary were driven in a police car behind the ambulance. In all the months and years to come, Uncle Hugh never did remember a single detail about the wreck or the days afterward. My mom had 8 broken ribs, a punctured lung, and a crushed knee where she hit the underside of the dash. She was hospitalized for a month. Uncle Hugh recovered slowly, amazingly with no brain damage, one of several miracles of the whole event. It's here that I should point out that Dad and Aunt Mary were the only ones wearing seat belts in the car. They walked away with the least amount of injury by a longshot. Good lesson for a young girl a couple of years away from driving. I NEVER go without my seat belt.

It was a traumatic experience for all of the family, and one of those life events that causes you to learn a lot of things at a rapid rate. I realized that my parents could die, and one day they would. I learned that life can change in an instant through no fault of your own.

Our bodies are a study in opposites. Both magnificently formed by God to do amazing things, yet incredibly vulnerable to the world we live in. Nerves that show us the the beauty of the earth through sights, sounds, smells and touch that bring us indescribable joy, can also cause us to feel excruciating pain and make us miserable. Nerves are responsible for enabling us to see, feel, hear and smell a waterfall or experience the saltiness of the ocean. We can rejoice in the smell of a newborn baby, feel the cuddly warmth that only a puppy or kitten uniquely possess. We can sink into the warmth of the arms of our mate, and want to stay there forever. We can sing to the Lord, feeling the joy that tells us there is so much more than this earth and this life, and yearn for that "so much more".

Yet, nerves and the pain they transmit to our brain can make us despair of life itself. They can bring depression, hopelessness, the giving up of joy. I've been there many times these past few years. Chronic pain brings despair and removes you from of the joy side of living. I've often felt removed from those around me. Existing in some parallel universe while the life I once had continues on as before with my family and friends. It's a lonely, left out, isolated place to live. All because of the nerves that also grant us the good part of being alive.
It's a mystery to me. Both blessing and cursing. God made us this way, to experience it all.

It's a roller coaster of a ride. Hang on, love the good moments like nobody's business! I want to feel the good moments again. They will be oh so sweet. And I'll never take them for granted. A good day, moment, evening or hour is a gift to be savored. Go savor the day. I'm going to.

What you really think about

Remember the not too long ago anti-drug commercials that used an egg and a frying pan to illustrate the dangers of drugs? "This is your brain. 'c-ra-ck'. sizzle, sizzle. This is your brain on drugs." I've found that I relate to that image some days in dealing with constant pain. Coping with pain day after day messes with your head. Sometimes you think crazy thoughts. I've at times felt hopelessness, dread, paranoia, fear, self-loathing, guilt, anger, self-pity.



I've taken a break for about 9 months now from writing. In part because by the time I finish work every day, I'm too beat to do much of anything. It's been very depressing. I have thoughts I want to put down on paper, er...screen? But I'm just too tired and in a fog to tackle it.

I have however been encouraged recently by the discovery of another blogger, "Gitzen Girl". She is inspiration for me. So...I'm going to pick this up once again. And a lot of things have happened this year. So here I go...

Pain by the numbers

I used to love paint by number kits when I was a little girl. Large black and white detailed pictures with teeny tiny numbers in each space. Those little plastic pots of paint and a tiny brush. Filling in the little spaces and creating a picture of a horse, or a kitten or puppy. By High School, I had graduated to those really big posters that come in a big tube, like blueprints. No more little numbers, and they came with a big set of markers. You got to choose your own colors. I remember getting a big one of a jungle scene. Tigers and toucans, it took me forever to finish it.

When you realize that you've tumbled down the rabbit hole of chronic pain, numbers take on a whole new meaning. Pain has it's own language. Pain management people use a pain scale in which you're asked to rate your pain on a scale from 0-10. There is no way to even began to add up how many times I've been asked to do this. The first time I was asked that question, I didn't really know how to answer. Choose a number between one and ten that would tell the doctor just how bad I felt. It seemed like this was a really important answer I was being asked to give. Rank it too low, then I'm hiding how bad it really is, but give a number too high, maybe no one will believe I'm in that much pain. Irrational thinking? Maybe, but that is what goes through the mind of a chronic pain patient. For some silly reason, I always want to say, "somewhere between 6 and 7, or between 7 & 8. 6.5?, 7.5?" Those aren't the choices, but for some reason, I want to answer that way. Some nurses don't like it when you do that. They peer over their charts and say, "Well, which is it?" They don't want my fractions messing up their chart or something. Even after nearly 7 years of the dreaded chart, I still struggle with it. After all, it changes from minute to minute. It can be all over the number chart in a one hour period.
Sometimes the numbers have little faces above them.Happy face over the 0, then a progressively distressed face as the numbers go higher. I've gotten to the point that I sometimes hate those little faces. I'm tired of trying to put a number to what I feel. It's hard to communicate pain, and I know that this is just a tool to help health care folks understand what is going on with you. The numbers paint a picture of the pain. But still. Sometimes I just hate those charts.
Eleven. Eleven was the number that finally gave me a name for my pain. On the website, www.rsdhope.org , I found out that most people with RSD go to 6 doctors before they are diagnosed. My magic number was 11. Over six years, I saw 11 doctors of all kinds before my pain was named by a neurosurgeon. Reflex Sympathetic Dystrophy. It's also know as Chronic Regional Pain Syndrome. A very old term for the condition is causalgia.
I saw every kind of doctor imaginable in my journey to find some kind of diagnosis and relief for the burning pain in my legs and the stabbing pain I often felt in my back and legs. I saw surgeons, neurologists, physical medicine doctors called physiatrists, several different pain management doctors, acupuncturists, chiropractors, internists, all initally convinced they could help, then months later telling me they did not know what else to do for me. I had several tell me they felt that I was wasting my time and money by coming to back to them, sometimes suggesting yet another doctor, sometimes they told me not to come back and had no further direction to give me. Just keep taking drugs to try and control the pain. I saw some "out there" types of medical and naturalist people too. But that is another blog entry for another day.
But how good it was to see Dr. 11, who finally said, "this is RSD, sometimes called causalgia." A name, something to research, something to maybe find help for. But at least there is a name for it.
11 is a lot of doctors, but better than 20! I was also able to find online support groups, I can communicate with people who have it and truly understand. I found testimonials of others that I could show my family and say-"this is it exactly. This is how I feel." Other people with RSD really get it. they don't judge, or feel like they have to find something "positive" to say, like "it could be worse, you could have what so and so has." That's really never helpful. At all.
Numbers and a name for my pain. At times in the past 7 years, it has consumed me, depressed me, made me miserable, angry, frustrated.
But, it's also been the fire that has molded me into who I am now. God doesn't waste anything.

The journey I did not expect

6 years, 10 months, 26 days. That is how long it's been since I began my journey as a person living a life with chronic pain as my companion. It started humorously enough. A quick slip and a fall on the kitchen floor. I felt pretty stupid and embarrassed and was very glad to have been alone when it happened. No witnesses. Good.
Earlier in the day, I had been cleaning and used furniture polish on my kitchen table. As I sprayed & polished, some of it must have wafted down to the linoleum floor. Just enough that when my sock-feet hit it that evening, I did a arm waving windmill dance as I tried to keep from going down. It was like slipping on ice. I sat down hard, but felt unhurt except for my dignity.

I didn't give it another thought, really. Until a couple of weeks later. Three days after the slip on the floor, I started having this throbbing pain in my right hip. I'd never felt it before and was not sure what was going on, but thought it would go away quickly. It didn't. After about a week of dealing with the pain unsuccessfully, I finally went to my doctor. I didn't even connect the pain with the fall until after a couple of doctor visits, my doc asked me if I had fallen recently. I had totally forgotten about my kitchen slip and slide experience. As I said "No...", the image of my windmill dance replayed in my mind, changing the answer to "oh yeah...." After drugs, tests, therapy, injections, etc, etc, etc, .....I had back surgery on May 13, 2003 to fuse two of my vertebrae. All the bad stuff you've heard about back surgery- all true. When the core of your physical being gets assaulted, you are never the same again. I was always a active, love-the-outdoors kind of person. Back surgery left me weak and depressed. As I recovered, I got some strength back and the pain I had been having was gone. I was really hoping to put the whole bad time behind me and get on with life. It seemed like that would be the case. For awhile. About two months in, I was standing on my front porch one day and suddenly my legs felt like they were badly sunburned and ants were stinging them, at the same time. It was the strangest feeling. I couldn't shake it off, walk away from it, or otherwise escape it. I had no idea what was attacking my body or why it came on like that. I still remember that exact moment. It's a surreal experience. It was the moment I began the journey I did not expect.

6 years, 10 months and 26 days later, I'm still on the journey.