Friday, March 25, 2011

Mucky Miserableness

March 25, 2011
It's March 25th already!! Hello?....Spring....are you out there? Somewhere

It's been a long winter in the Midwest. In our area, we have had the 4th largest snow accumulation in recorded history - according to the weatherman. And this week in particular, we are sporting temperatures that are 20 degrees below the average. So, in my desire to join the lamenting facebook community, I opened my front door to take a picture of this mucky miserableness in order that I should upload it for all the world wide web to see. Thereby joining the social networking collective ego so that I might find my due comfort in all of this...well, crap.

And then I thought to myself. Man, it takes a lot of work to actually get my camera out. (words in italics should be read internally with a distinctive whinny-ness)  This would mean actually finding it, having to open the door and let in the cold, uploading the photo to my computer and eventually downloading it to this blog... or am I downloading to my computer and uploading to my blog...or to my photo editor and then downloading....   never mind. It just seemed like too much work. So then I thought to myself, "Hey! I have a picture just like this on facebook already!"

Oh, I sure did. Or do.
And then it hit me. I'll blame it on the lupus fog, this inability to remember the very lessons I aspire to live my life by. You know, the whole being present in the moment bit. Like the comment I made two days ago in the very post that precedes this one:

In all honesty, the only thing that gets me through to the next day is making the most out of this one. Finding the good in even the worst situations. I read a quote the other day in Tolle's book, A New Earth - "The primary cause of unhappiness is never the situation you are in, but your thoughts about it." When you think about it, that's really true.

But if I'm not making my ridiculousness completely evident... take a peek at the picture I posted on November 13, 2010 - the first snowfall of the year...

November 13, 2010
Hum... That's interesting.

And here's my caption:

First Snow, 11/13/10, outside the front door!

And here's the conversation that followed under said picture, on facebook:

Friend: Wow!
Me: Beautiful!
Friend: AH-mazing!
Me: It does not get any more peaceful!

I promise you, there was no photoshopping of either picture. If I'm not mistaken, the second one is just a tad bit on the dreary side. In fact, the trees look depressed! At least in the picture on top the sky is blue and the pines are reaching up as if to say, "Praise be Spring!" Yet, today, I see miserableness. In November, I saw peace.

So what's changed? I still have my family. I still live in the same beautiful home. My income has actually increased due to disability payments and the financial strain of Christmas is actually nine months away and not ONE, thank God. I still have food to eat and lots of good books to read. We actually have a new car now, one that is much more dependable and cost efficient. So what the heck?

One thing, and one thing only has changed. And that is my mind.

Indeed, Eckhart Tolle is correct. "The primary cause of unhappiness is never the situation you are in, but your thoughts about it." 

This is such a simple lesson. Why is it so hard to learn? If I could just "be" in this moment instead of spending all of my energy making up a good story for "why", then I might actually find the beauty in it. The part of Being that makes being a Human-Being so very wonderful!

Try that on for size today!

Wednesday, March 23, 2011

…but how are you doing?

Leave it to adult children to always "tell you like it is"! And having seven daughter's....well, let's say that our household is never short on opinions or advice! And believe me, I would have it no other way.

My oldest daughter and her husband recently returned from a weeks vacation in the Dominican Republic. It was a much needed reprieve from work and winter weather. When she got home, she decided to check my blog to see how I have been doing. Always my biggest fan, and always supportive, she had some advice for me. It went something like this.."You know Mom, your articles are always so inspiring and there is always such a good message. But sometimes I just like to know how you are doing."  She makes a good point.

I think that when I made the transition from Friends of Theresa to writing a blog (which has been very healing and quite a good mental exercise for my cognitive issues) I somehow latched on to the assumption that people needed to hear a little more of the positive and not so much of the painful day to day illness. I actually think this has more to do with me than you. But in reality, Friends of Theresa was developed originally for one reason, and that was so that friends and family could keep in touch with my health without having to make a phone call or a visit - or to put the onus on my husband to keep everyone informed. So, that in mind, I hope to strike up some sort of balance. Thank you, lovely daughter, for more good advice!

I struggle with a lot of different issues these days. I'm actually working with my rheumatologist over the phone this week to try and get a flare under control. A flare, for me, is basically any increase in disease "activity". Sometimes it lands me in the hospital, like last month. And sometimes it just incapacitates me. Which does not take much since I'm generally "incapacitated" in some form or another. On a normal day, fatigue and pain are tolerable. Joints are sore, but I am able to use them.  Neuropathy, although very annoying, is not painful. I am able to eat without extreme pain or nausea, but my diet is limited. I may or may not be running a fever and glands are not swollen. Thinking comes easier and my eyesight allows me to read. Headache is lingering in the background of everything. Night time is better, yet still broken. I am usually awakened by extreme dry mouth and throat or joint and muscle pain. A drink and change of position and I am back to sleep.

When flaring, like this week, everything is exacerbated. Joints and muscles make movement very difficult. Fatigue is so extreme that being up longer than 15 minutes is very difficult. I spend most of my day up and down. Throw a load of clothes in the washer - lay down. Fix myself something to eat - lay down. Work on the computer for a few minutes - lay down. Let the dogs out - lay down. You get the picture. Headaches are intractable, neuropathy is painful  - and frightening - and nothing seems logical. Thinking is a real chore and remembering is even worse. Consistent sleep is next to impossible. Everything gets canceled when I have these weeks - which are more often than not. Just eating and going to the bathroom become all consuming and painful activities. I become completely housebound.  And if I can not get things under control, then I end up in the hospital.

I'm not quite sure what my issue is this week. It seems the past few months I have been taking a gradual turn in the downward direction and it scares me a bit. Three months ago I felt like maintaining was tolerable. I don't like the new baseline I seem to be establishing these days. Living one notch up from going into the ER is not "doable" for me. We have increased the chemotherapy to a maximum level, so the only other alternative is to start going back up on the prednisone. Not the plan for tapering we had hoped for, but I'm willing to do just about anything right now to feel a little better.

I also worry about the toll it takes on my family. It's not just the physical toll either. In fact, I now have a women coming in weekly to help me. But I am more worried about the emotional toll. It's tough watching your wife or your mom suffer. As much as I try to "look" well, they know the difference. And they worry. Walking on eggshells, looking for the littlest signs that mean Mom is heading to the ER. I hear it in their voices and see it in their eyes. I wonder about all the things they are not telling me in order to not add to my burden and it saddens me to think there may be times when they don't have "Mom" to turn to. And of course, all these things seem much larger the sicker I am!

In all honesty, the only thing that gets me through to the next day is making the most out of this one. Finding the good in even the worst situations. I read a quote the other day in Tolle's book,  A New Earth - "The primary cause of unhappiness is never the situation you are in, but your thoughts about it." When you think about it, that's really true. When I am stuck in bed and can't do anything else, if I lay there and tell myself how miserable I am, or think about how I am never going to get better, or obsess about how many times I have been in this situation, or worry about never getting out of this situation...well, I can send myself right down into a tailspin so fast that even one of Dave's BEST jokes can't get me out. But... if I look out my window and think about the beauty I see out there, or look into the eyes of one of my dogs, or think about how fortunate I am to have such a beautiful home to "be" in....well, I can find the blessing in the moment. Having the choice - I choose the blessing.

These weeks are tough, no doubt about it. And this past week has been a struggle. But like I always say, it makes a world of difference knowing my friends and family are out there keeping track of me. In the meantime, I'll do better at sharing the good AND the not so good times. I guess it's just part of the deal!


Monday, March 21, 2011

The Women In The Mirror

Aleela and I running in Marshall, Minnesota

The second day of Spring! A welcome season, indeed. Especially this year. I have always prided myself in being a true Midwestern girl, loving the change of seasons and all they have to offer. Winter in general has been a time of rest for me. Less hours in the day has always meant less to do and more time hunkering down with the family watching good movies and getting to bed early. Since becoming ill, my reaction to the change of seasons has evolved significantly. For example, much of my time is spent indoors regardless of the season. Sunshine and heat can be my worst enemy and if not taken with precaution can lead very quickly to a flare. So the reprieve that winter once offered now feels even more restricting. This year in particular, I had to work very hard at keeping things in perspective and staying in the "Now".  But I'm not always successful, and sometimes that's not only OK, but maybe a little bit necessary. 

This will be my third Spring "post-diagnosis". I'm hoping to be be better prepared this year. The past two years things really crept up on me and it was not until I did a considerable amount of suffering that I finally figured things out. Much like holidays and birthdays bring suffering to those that have lost loved ones, so too, I feel loss associated with particular times of the year. The embodiment of my loss of health is epitomized by one thing - my inability to run. I started running when I was eleven years old. I knew at a very young age there was something in running that gave me space. It opened me up, cleared out the mess of life and made me feel good about myself. Until this illness, running had seen me through every struggle. Whether it was the birth of babies, back surgeries, the death of loved ones or the end of a marriage - running helped me to heal.  And springtime was my favorite time to run.

One of the best things about running for me, was the opportunity it presented to run with my family. Dave and I talk frequently about all the cities and states we have run in. It's fun to go back to certain locations and think about all the roads and paths we have traveled. Hundreds and hundreds and hundreds of miles on foot, each step carrying with it a story. Even around our own home, there is about a twenty five mile radius of endless country roads that bear the footprints of our travels. We can drive those very same roads and never experience the sights, smells and sounds that we do when on foot. It's unexplainable.

My oldest daughter Aleela is also a runner. The years immediately preceding my illness were some of our best together. There is a lot of conversation that goes on when you are on a twenty mile run together. We traversed some pretty intense terrain in order to get miles logged during marathon training. I remember one summer when Dave was unable to train with us. We had traveled to Marshall, Minnesota where she lived so that she would not have to do her "long run" alone.(we did this a lot for each other, alternating who had to travel) Dave drove us out into the country so that we could run our seventeen miles back into town with the wind at our backs. He drove slowly behind us the entire way carrying our water and food, and offering transportation if either of us couldn't make it back home. Going only about five miles per hour the heat off the engine made the thermometer rise a bit more than normal, but even at that, it registered 118 degrees Fahrenheit!

A record run!

Zumbrota, MN
Winter or summer, we never seemed to let the elements keep us from our time together. On one occasion we could not physically be together for our long run. The weather was horrible. About thirty-eight degrees, twenty-five mile per hour winds and torrential rain was the mix for the day and we both needed to log about fifteen miles. Half way through the run my cell phone rang and it was Aleela. I could barely understand her because of the howling wind and rain! That was one of the few times we agreed to give up the fight and go home. Thank goodness for husbands and cell phones!

Sometimes I long so desperately for those days that I can barely swallow the lump that fills my throat. I suppose, on the outside looking in, most would think us absolutely crazy. I wish I could describe better how much more those experiences were other than just "exercise". I think what I am realizing is that it was during those times that I began to experience what it is like to be present in the moment. And to have been in that space with the people I love most in life was a gift beyond measure.

 This past weekend I was with my daughter Emma in Kohl's. She was in need of some new summer clothes and we thought we would take advantage of one of their big sales. She's easy to shop with. It usually takes her about fifteen minutes to grab up a few items, try them on, take what fits and head to the check out. I usually wait outside the dressing room with all the other moms for the "approval viewing". This time I stood there alone. And there it hit me. Reflecting back at me in the mirror ahead, was the image of a women I am still coming to grips with today. Two and a half years of illness, hospitalizations, medications and inactivity have definitely taken their toll. Hair loss, skin changes, teeth coloring, dark eyes and prednisone weight make looking and feeling healthy a struggle to say the least. A year ago, even though I was unable to run, I would have looked at this issue as a challenge. Much like I would have done during my running days. "Well then, set some goals! Write things down, stick with plan and change my situation." If I were to have been writing this article a year ago I probably would have ended it with some sort of analogy about running. "Even though I am no longer hitting the pavement with my husband and daughter, I am still running marathons of a different sort....blah, blah, blah..." But I'm not.

The women in the mirror is indeed a different women. She's a better women. I may still struggle with the image I see (and even that is getting much better), but the women looking back at me is no longer running - TO anything or FROM anything. My life is much less about "becoming" and much more about "being". I guess you could say I'm experiencing my own change of seasons. Like we all must do at some point or another as the days of our lives pass so quickly by. And it's OK to sit and think for a bit about the paths our feet have trod along the way. But it's the very ending of those stories that make way for the new. It's the cold, barren dirt of winter that provides the life giving energies to the beauty of spring.

For in everything, there is a season. 

I love you, Aleela.

Wednesday, March 16, 2011

The Sound of Suffering

"Flowers" by Dr. Robert O. Fisch
The past couple of days have been quite a struggle for me, in a number of regards. On a physical level, I can't quite seem to shake the aftereffects of my infusion on Monday. Either that, or I'm just experiencing some sort of flare. Regardless, I've acquired quite a headache and "thinking" in general is taking more of an effort than I like. What makes this most frustrating for me is the fact that I have so many thoughts running through my head that I want desperately to piece together in some sort of message to you. This desire is so persistent, that I can not ignore it. So if this message seems disjointed or chaotic, please know the difficulty at which it comes.

On an emotional level, the past days I have been overwhelmed with highs and lows.The tragedy that ravaged the people of Japan is a horror I never thought I would see in my lifetime. Comprehending it seems impossible. So silenced was I by the magnitude of this event, I neglected to even reach out to those I knew of that had family living in the country. In fact, those I neglected are a part of my very own family. If not for the compassionate reminder of my sister-in-law, I may still be paralyzed with inaction to this day.

On Monday, after my infusion, my husband and I had the absolute privilege of attending a performance at the Ordway. I generally go straight home and to bed after IVIg because of the side effects. But this night was different. We had been invited by our daughter Casey to see a production entitled Light from the Yellow Star, Remain Humane Even in Inhumane Circumstances. The music was that of Boris Pigovat, entitled Music of Sorrow and Love and was performed by the University of St. Thomas Wind Ensemble. Also featured was the Saint Paul City Ballet and the art and commentary of Dr. Robert O. Fisch, Holocaust survivor. But what made this event most special to us was the featured soloist, my step-daughter Casey.

The evening was comprised of the writings and artwork of Dr. Robert O. Fisch, intertwined with poignantly beautiful music and the intense emotion of the St. Paul Ballet. Throughout each piece Casey's soprano voice swept throughout the theater, caressing the ears of the listener, not unlike that of Sarah Brightman in Andrew Lloyd Webber's Requiem. It was a moment I will never forget.

Casey Johnson with the UST Symphonic Wind Ensemble

The narrative, given by Dr. Fisch, was extremely moving. Despite his story of terrible suffering, his message exudes hope and optimism about life. Choosing compassion over bitterness, Dr. Fisch describes his life of service towards others, especially children. His stories and artwork both follow his progression from darkness into light. Transforming his suffering into hope.

Already, still in the midst of unfathomable tragedy, signs of compassion and hope can be seen on the faces of the Japanese people. How this is possible remains the secrete of the human spirit. Transforming our greatest sufferings into opportunities to love, are the miracles of choice. And when this happens, walls fall down, cultural lines are erased and countries are without borders.

As I sat there in the Ordway listening to Casey's voice my heart understood something. Even as the music she sang had no words, only as her hauntingly beautiful "Ahhhhs" filled the air,  was it then that I realized the importance of our voices in the midst of suffering. Even if they are but a whisper or a moan. What a loss it would be to this world if Dr.Fisch had chosen to be paralyzed by his experience. If he had been silenced by his suffering. I can not begin to compare my suffering over the past two years with the pain of the people of Japan or the Holocaust. But what I can do is learn from their courage. No matter how small our words may seem, when they are spoken from the depth of our experience they hold incredible healing, not only for ourselves, but for those that hear them.

When I think of why I write this blog to you, it's that very hope. That in our conversations with each other the lines that divide our sufferings can be erased and the common thread of compassion can weave the tapestry that is this life. Beautiful, colorful and real.



Sunday, March 13, 2011

Monday, Monday....

One of the major symptoms of my autoimmune diseases is peripheral neuropathy.Peripheral neuopathy describes damage to the peripheral nervous system. This is the communication network that transmits information from the brain and spinal cord (the Central Nervous System or CNS) to every other part of the body. They also send sensory information back to the brain and spinal cord, such as a message that your feet are cold or your finger is getting burned. Damage to the peripheral nervous system interferes with these vital connections. Much like static on a telephone line, peripheral neuropathy interrupts messages between the brain and the rest of the body.

Because every peripheral nerve has a highly specialized function in a specific part of the body, a number symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur. Regrettably, I am one of those extreme cases.

So, why did I give you this brief lesson in peripheral neuropathy? Because every other Monday I am admitted into the University of Minnesota's Infusion Specialty Clinic for six hours of Intravenous Immunoglobulin (IVIg) therapy to help control the peripheral neuropathy that is caused by my autoimmune diseases.

Specialty Infusion and Procedure Center

The Specialty Infusion and Procedure Center is a brand new department located on the second floor of the Phillips Wagensteen Building on the University of Minnesota Medical Center Campus. Prior to this new facility I received my IVIg either in the hospital or in the Masonic Cancer Center.  Both very good locations, but unfortunately not large enough for the growing populations of people needing infusion therapies.

The SIPC a beautiful, state of the art facility completely designed to meet the needs of the infusion patient. Offering both rooms with recliners and hospital beds, it is comfortable, quiet and fully staffed with nurses specialized in the administration of the many varieties of infusion therapy. This fact alone makes my bi-weekly visits much easier to tolerate. In a hospital setting nurses are presented with an almost unlimited array of patient/illness circumstances. This is even more evident when being hospitalized for autoimmune diseases - no one really knows where to "put" you. Most likely, depending on what part of one's body is being affected, that is where one ends up. For instance, if I am having trouble with my pancreas, I end up on the 7th floor in the GI department. If I am having trouble with my nervous system, I end up on the 6th floor in neurology. There is no floor for autoimmune diseases.

By having the specialty infusion center available to me, I avoid much of the suffering that comes with having nurses that are not specifically trained in IV therapy. IV's go in easier, infusion rates are better managed and overall "tricks of the trade" offer comfort and ward off potential problems. Being in a smaller more intimate setting also allows the opportunity to establish relationships with the nurses. With the risk of serious allergic reaction a very real possibility, it benefits me to have a nurse that knows my body almost better than I do.

Once "hooked up",  I receive two medications prior to receiving the therapy - benadryl and hydrocortisone. Both administered intravenously, these drugs help prevent an allergic reaction to the immunoglobulin. Since IVIG is a blood product (each lot containing the plasma from over 10,000 blood donations) the chance of reaction is always present. These pre-medications also serve another very valuable role in my IVIg experience....they put me to sleep! It's almost instantaneous. Within minutes of receiving the benedryl I am out like a light! And since this is a six hour process, that's a big perk!

 About four hours into the therapy I gradually start to wake up. This begins the "not so fun" part of the IVIg experience. Even with the administration of the pre-medications, I still experience allergic reaction to some degree. At times this can be quite minor - lower back discomfort, mild headache and low grade fever. Other times, I suffer from flu-like symptoms - body aches, fever, chills and nausea. Two times now I have had a serious reaction which has ended up with a week long stay in the hospital. These symptoms are much like those of infectious meningitis and are completely disabling.

Tomorrow is my IVIg Monday. I've been asked by family and friends if I dread when this day comes. Honestly, I really do not. There are so many people out there suffering from autoimmune diseases that do not have access to good health care. Many have doctors that refuse to give them appropriate diagnosis to receive the correct care, others have doctors that remain uneducated in the latest types of treatment. And even those with access to quality providers run into issues of insurance authorization (IVIg can cost up to $45,000 per treatment) or no insurance at all. I have been quite blessed in this regard. Not one second goes by that I am not thankful for the insurance I have, the doctors that treat me or the facilities in which I receive care.

So, unlike the song by The Mama's And The Papas, when Monday comes you won't find me "crying all of the time". Instead, the next time you think of me sitting in my recliner on the second floor of the PWB...don't feel bad. Know that I am in good hands and most likely dreaming of all the wonderful days to come!

Peace to you.

Thursday, March 10, 2011

Emma Jane

Photo by David Johnson

       Emma Jane

I love my children.  Each of them so different from the other, none lacking in any way to the next.  But, let me tell you….no two are more different than the twins, Emma Jane and Sara Jane.  For those of you old enough to remember The Odd Couple (dating myself here), Emma would be Oscar.  Always just going about her business, moving in and out of our days with interesting random facts and very dry humor.  Not much bothers Emma – or so we think.

One of the greatest gifts Lupus has given me is time. The first moments I began to realize this were the days following my “code blue” episode in the hospital almost two years ago. Time became something I paid attention to. It almost took on a three dimensional property. I felt it everywhere, yet nowhere. This all pervasive gift that no matter how hard I tried, no matter how precious, I could not hold on to it. It meant everything to me, and it meant nothing. 

Letting go of time has allowed me a place of stillness; and in this stillness, I have rediscovered my children. Hours, upon hours, upon hours, have been spent with them by my side. In hospital rooms, in bedrooms, next to my chair or sitting in the kitchen, I have been awakened to the miracle that resides within each one of them.  Some days I feel as if I am seeing them for the very first time.  I may have been a much healthier person two and a half years ago, but all the health in the world does me no good if I am missing the very thing that makes life worth living.  The people I love. 

It was during one of these moments that Emma and I were having a rather passionate discussion.  As is quite often the case in our home, we were discussing the issue of social justice; which eventually leads to topics like philosophy, politics and religion.  Yes, these can be rather deep discussions indeed! The topic de jour revolved around the concept or perception of space.  I was trying to describe the idea of interdependent origination and its affect on our actions in this world.  Simply put, cause and effect.  Taken to the smallest degree, one understands the butterfly effect.  Moreover, the responsibility we have as human beings to our world and all that is in it. 

I was trying my best to give examples of how close we are, in reality, to those that live on the other side of this globe.  I began by telling her that if someone in our immediate family was hurting we would not think twice about helping them.  I then moved out into space and spoke of her grandparents, then her friends and then the people that live in our town. I kept going until the borders reached out past the country in which we call home.  I then pointed out the dilemma this creates if we are truly all connected; if my actions really do have an impact on my friends in Africa or the glaciers in Antarctica. Just because we do not understand the consequences within our limited understanding of time, does not make it not so. Nor does it make it less important. 

I then moved on to something I thought would be easier to relate to.  The human body. Much like Jesus talks about the Body of Christ in relationship to the church, there is an obvious property of interconnectedness. Comprised of many parts, all very different, all playing different roles – yet when left alone, quite useless; and when damaged can lead to the destruction of the entire body.  At this point, I was becoming quite passionate. Lost in the enthusiasm of my feelings with regards to this subject, it took me a bit to notice the pain that had found its place within Emma. It was then that Emma spoke words that that I will never forget. 

I do not know if it was the look on her face, or the utter sadness in her voice, or the words that she spoke, that had the biggest impact on me.  Most likely, it was the collective effect of all three.  She looked directly at me, and in the quietest of voices, with a tear in her eye, she said this:

“Why can’t the world just bend down and help the wounded foot?”

I weep as I type this. The very reading of it floods my heart with emotion.  Pieces of a seemingly disconnected, chronically ill state of being, woven together in one moment.  If I had not gotten sick, my spirit would not have broke. If my spirit would not have broken, I would not have searched for a better way. If I would not have searched for a better way, I would not have found the way to peace. If I had not found peace, I would have no concept of the beauty of time. If I did not understand the impermanence of time, I would never have been in that moment. If I would have never been present in that moment, I would have never – never – heard the words so eloquent, the sound so beautiful, the message so true that flowed from the innocence and wisdom of my daughter.

But I did. 

Whether we choose to understand it or not, we are all connected in this life.  The voice I use, the food I eat, the things I buy, the time I spend, the words I write, the phone calls I make, the emails I type, the help I give, the hurt I cause… Just like the whisper of the butterfly’s delicate wings or the devastation of an earthquake, nothing is independent.  Life is a tangled web of interconnections, being constantly transformed by the choices we make. 

I guess when I found out I had lupus I was presented with choices I needed to make. I am actually thankful that I was given the opportunity.  Being present in the lives of my children is a choice I may never have understood if not for that opportunity.  To really hear them, to let go of time and space has simply melted away barriers that once took up so much energy to maintain.  I’m amazed at what came so easily from Emma’s thoughts that day.  Their impact on me personally as well as my views on social justice issues  has been great.  Written in my heart forever. 

If I had not gotten lupus…