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!!!!  

Conversation with the Grackle

I have mentioned that I have a depression disorder. I don't talk about all that much, as I take good meds, and I have an excellent therapist.So, I honestly don't worry too much. But, as with all of us with mental health diseases, I have days when all of my coping skills come to naught. I have always called these days my BlackBird days.

BlackBird days are the days when it feels as if a huge black bird has flown into my field of vision, wings outspread, covering my eyes and my mind from seeing anything but the darkness. I knew I had the right therapist when shortly after beginning to work with her, she mentioned something she called Black Bird days!! I nearly wept with joy to know that she got it!!! She is an integral part of my healing and growth.

My BlackBird days are much fewer and farther between than they have ever been, and when I do have them it seems it is more a matter of grief than mental illness these days. Grief, is the most difficult process!! It rolls over me in the oddest times, just when I think I am healing here comes a black day!! This week was my late husband's birthday. Plus I am dealing with the feelings that my mobility issues have brought to the fore, and the weather is just middle of July, midwest UGLY!! So there I was sitting on the deck, kinda feeling sorry for myself, which I honestly try not to allow!!

It was early morning, my favorite time of day for my deck. The sun just starting to approach the horizon in beautiful cotton candy pinks and pale lemony yellows. The morning song of the birds a wonderful backdrop to meditation.Then I saw the grackle, sitting at the end of my deck. Now a grackle is part of the family of birds known as blackbirds. It is often mistaken for a crow, it is longer, and its tail is different,and its behavior is a bit different. The thing I love about watching the grackles in my yard is that they do not hop, they walk, and the adult birds are very concerned about the younger birds. Usually, though, the grackles don't get very close to my deck, they tend to stay out in the open in the yard. So I was surprised to have a grackle sitting there about 6 feet away.

Of course, I said good morning, I always speak to any of the birds or animals that visit me when I am on the deck. Most often the bird or squirrel will scamper away, unless it is one of my regular visitors. the critters who have become used to me being there. This bird was not one of my regular visitors, so I was surprised when he just looked me in the eye, and walked a bit closer.

Now, this is the part where you can decide that I imagine things, and I would not disagree with you. But, to quote Albert Einstein...Imagination is more important than knowledge.

The grackle continued to look at me, and then the grackle spoke to me. No, the grackle did not SPEAK with words, but the grackle did speak, in the not unpleasant squawk of the grackle-it is less jarring than a crow. Hmmm, I took it to be a greeting, good morning right back 'atcha' type of thing, so I continued to speak to the grackle.

I thanked brother grackle for visiting me on my deck, and I talked about the weather, and all the time the grackle was listening and vocalizing. We had some companionable silences, and then I began to tell brother grackle about my images of Black Birds. I shared that the image of the Black Bird blinding my vision has always been uncomfortable for me. While I was sharing, brother grackle turned a bit, and I saw the most amazing thing. Grackles, are not black! Oh they look black when you see them in your yard, but sitting this close, and in the morning sunshine I saw the truth. This bird was anything but black, the feathers are wonderfully iridescent in all of the colors you can imagine!Well, that made me think!

So I talked to the grackle about his feathers, and the beautiful colors, and I started to see that my mood this morning was not a part of my depression,not a part of any illness but a normal part of the grieving process. I have several things that I am grieving. Of course, the loss of my husband is the major loss, but other parts of my life are lost to me more every day. Because of the neurological diseases I no longer am able to sew, and I miss sewing. I can no longer wield a chef's knife with skill as I cook, and I miss cooking. I can no longer just decide to go for a walk, or visit a museum. Walking is more and more difficult and painful and I must decide whether I need my cane, my walker, or my wheelchair today.

But, sitting there seeing the beautiful colors of the black bird on my deck was a gift. I could see clearly that things aren't always as you originally perceive them, and just because something changes, doesn't look like you thought it should or would, doesn't mean that it doesn't look like it is supposed to! I often say perception is reality. But the really marvelous thing is that when your perception of something changes, the reality must change with it. So, instead of sitting on my deck feeling the oppression of a BlackBird day coming on, I could learn to see that not all black birds are black. Not all sadness is depression, and sometimes you just have to grieve the things that you have lost. Part of the grieving process is to to come to terms with the fact that your life will be different, and to help you move towards that new normal.

I thought about all of these things as I sat there with the grackle, and then the grackle turned and walked away. I am so glad the grackle visited me this morning, blessed me with a conversation and a lesson. Amazing that Spirit would send me a helper in the form of something I feared-a Black Bird. How often do our fears keep us from perceiving things as there are? Perception, just like life, is changeable, and those who can adapt will always be open  to the beauty that can come even in the form of a black bird who wasn't ever black to begin with!!

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.

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?