Finding My Way Forward

“She begins as ancient bones and fleshes out her life from there”- Dr. Clarissa Pinkola Estes

The quote spoke to me as I read it sitting on a beautiful beach in Punta Cana last summer.  I didn’t realize how true to my life it would be until I had hit rock bottom just two months later.  For several years my life has been relatively stable.  Good health, a nice job, a loving husband and the usual ups and downs which come from raising a family.  I have been, in all sense of the word, fortunate.  That beautiful stability came to an abrupt and frightening end after what seemed like a simple food allergy and ensuing rash on my face.

I had had a busy summer with trips to the Dominican Republic and Mexico.  It was during my trip to Mexico that the rash showed up on my face.  I went to the doctor and thought surely this would be a simple fix.  I  worried about my complexion and scar damage.  I moved forward with life even starting half marathon training.  Unfortunately, soon the rash spread from my face to the rest of my body.  And suddenly, from night to day, my muscles became so weak I was not able to get dressed without taking multiple breaks.  Lifting my arms was excruciatingly painful.  Walking across a room felt like my quads were on fire and I was out of breath.  My heart raced.  My head throbbed.  My blood pressure sky rocketed.  What was happening??

Over the course of a month and a half I saw eight doctors including dermatologists, infectious disease doctors and my primary care physician.  They ran so many tests I did not have enough veins to offer on my arms.  Initially everything came back negative. Every common and rare disease that was tested came back normal.  Finally my doctor ran a CK test that revealed a high level of creatine in my blood, a physical proof for my muscle deterioration and weakness but not the cause.  He immediately ordered two bags of IV and I rushed to get treatment to help my kidneys process the creatine.. Still I had no answers.

Throughout all of this I was still trying to go to work.  Some days I could make it for a couple of hours. Some days almost a full day.  Just getting dressed and out of the door had me panting for breath.  Every day, my concerned co-workers hoped that I would be better.  Every day I disappointed them with my answer.  Not better, still panting, blood pressure up to 180/110 at the last doctor’s visit.  Coming home from work was excruciating.  I did my slow walk straight to the couch to close my eyes and elevate my arms on pillows. Showering took such a toll that my husband began to help me wash my hair.  Afterwards I would half lay on the bed too weak to fully climb up.  My body was so exhausted I could not move.  My entire body throbbed.  It was that feeling of impotence that would push me over the edge.  The tears would come and after a few minutes I would gather my strength to go back downstairs to sit. The nights were terrifying.  I barely had the strength to climb in to bed.  Sleeping with throbbing arms,  heavy chest, heart pounding hoping not to have a fatal heart attack or stroke in the middle of the night.

The emotional toll of not knowing was overwhelming.  I cried my way through every doctor’s appointment.  I’ve always been so strong at first I was ashamed of my tears.  Unfortunately, there was nothing left in my emotional tank and the knowledge that what I was going through was understandably difficult allowed me to stop feeling shame.  How could you not feel vulnerable you have an inexplicable rash all over your body.  Or when you wake up one day and your left arm is swollen?   Or when you find a lump on the back of your head that the doctor would not even acknowledge?  The lump was followed by a rash all over my head that began to scab and fall like snow out of my hair.  I woke up every day hoping that I would be better.  Every time I rolled myself out of bed only to find that the heavy arms and legs where still there.  I felt like I was walking under 10 feet of water.  I had to give myself a pep talk just to get through brushing my teeth.

Within the first three weeks I stopped researching online.  My husband became the chief researcher.   I couldn’t handle thinking of all of the possible horrific things that could be wrong.  I couldn’t handle another panic attack another bout of anxiety.  I felt like I was disintegrating at a cellular level.  My energy was so low I could only focus on doing the bare minimum in my life.  I mean the bare minimum. Brush your teeth,  drink water, sit up and eat, get dressed, walk to the car, take one step at a time, open a door, sit down.  Rest between each of these tasks. Catch your breath. I’ve always been such a positive person I had to get used to saying, no I’m not ok.  No, I’m not better.  No, I still don’t know what is wrong. No, the doctor doesn’t know yet.

Having never faced a medical crisis with such alarming symptoms and lack of answers left me completely unprepared to cope.  I began to look outside myself and think about all of the people in this world who face a chronic illness.  People who may or may not have the support system that I have.  My husband and mom tending to me, washing my hair, putting on lotion, taking over the daily chores.  Transportation, access to good doctors and the ability to pay the doctor’s bills.  A boss and co-workers who completely understood and supported me.  How many people struggle daily with these types of issues?  How many people feel hopeless in their situation? How strong must they be? Even before I received my final diagnosis I counted myself so very lucky for this support system.

After yet another day of excruciating pain and fatigue I  was finally too weak to drive myself home from work and ended up in the ER.  They had no answers for me that day but they did refer me to another infectious disease doctor who found the dermatologist that would finally give me my diagnosis.  The IV I got in the ER strengthened me just enough to be able to drive myself to this last doctor’s appointment.  I honestly don’t know if I could have made it any longer.  I remember driving there and feeling my heart throbbing and my neck being so painful.  I walked ever so slowly behind the nurse and could barely get myself on the doctor’s table.  I was so tired I had to lie down in between seeing the nurse, the intern and finally my doctor. Every time one of them walked  in I remember being so weak I was barely able to sit up.  She told me I had a rare autoimmune disorder called dermatomyositis.  This is when your immune system attacks your skin and your muscles.  I cried yet again when she told me the treatment would be two years with prednisone but that she had had very good results. She said I was strong and would begin to feel better within two weeks. I feared the long term risks related to prednisone.  She was so confident and understanding I knew I had to try but deep inside I was scared to death.  I walked out with a diagnosis and a prescription but it would only be the beginning of my healing.

“She begins as ancient bones and fleshes out her life from there” became my reality.  My muscles were destroyed. My psyche was depleted. My soul was weakened but I had the chance to flesh out my life once again.





























An Ode to Luna

After eight years of living with Luna I still believe that she may be the best dog of all time.  I have known many dogs, some mine, some fostered but Luna is really something to behold.  Luna is a Jack Russell-Chihuahua mix.  I know what you are thinking.  That is a combination that is bound to be annoying.  On the contrary,  Luna is not the yappy barking type although she will bark to protect.  Her name comes from the moon shaped white line of fur that cuts through her light brown face.  Most of her body, except for her face is white.  She has the cutest little under bite and short stout muscular legs.  She weighs only about sixteen pounds which does not make her a pocket dog but definitely portable.

What I love most about Luna is her spunk.  She is the old dog of the pack but she bounds, accelerates, jumps, zigs and zags as she teases the bigger dogs to play.  She is often harassed and corralled by the younger dogs but she does not let that deter her.  She will jump out to play and then quickly dash behind a bush or a chair to avoid the punishment coming towards her.  She will willingly join a game of tug of war even when her tiny body has to reach up tall just to keep up.  Luna is that perfect mother or older sister type to her fellow mates.  She is kind, loving and sometimes stern as she has assists in raising three younger siblings and several fosters.

Luna is often sleeping belly up next to me on the couch.  She is not overly needy but generally affectionate.  A funny fact about Luna is that she does not like anything to be too loud.  She will quickly jump off your lap if you start cheering for your team on tv.  She doesn’t even really like loud talking.  I don’t think she gets scared just generally annoyed.

As is often the case in life sometimes pieces come together and make sense only as we look back.  Luna was the puppy we brought home a few months after realizing that our plans to have a second child would not come to fruition.  It was a time when the sight of a child or baby would bring uncontrollable tears of emotion.  It was a time that I rarely look back on yet when I do I realize how hard, stressful and emotional it was.  And then came Luna.  Luna whose tiny pink belly brought a smile to my face.  Luna, whose timid yet brave paws learned how to climb the stairs letting out a little bark as she did each one.  Luna who became a loving companion in times of joy and sadness.  Luna, whose unconditional love healed and filled that part of my heart that had been broken.  As her sweet little face turns white with age my affection for her grows even more.  Short legs, pink belly and moon faced Luna came into my life just in time to heal me.


Change, parenting and new beginnings

Change is part of parenting.  You watch your children change from newborns, to toddlers to teens in what seems like the blink of an eye.    As a parent, you change and grow with your child. You watch, wonder and live even more fully as your child learns to ride a bike, roller skate, hit a baseball or score a soccer goal.  Birthday parties, Halloween costumes and Christmas mornings are all so much more meaningful witnessed through the eyes of a child.

Through all of those changes and life lessons you spend hours and hours thinking of what is best for your child.  You look for the best school, the best summer camp, the best tutors. You make mistakes and corrections.  And you hope that you don’t screw them up too much.  Then there comes a time when you are at the precipice of a child leaving home and you realize: “This is it”.  No more do overs. No more adjustments. No more time.  It is like turning in your final exam and you don’t yet know if you have passed the test.  You look back on a childhood provided, full of smiles, tears, good days and bad.

Everything is on the verge of transformation.  There is a blank space where the future lies.  Will he be a success? Will he be happy? Will he be safe? Will I be ok? Who am I when I am not a full time parent?  What will I do with all of this time??  The majority of my life has been devoted to a human being whose success and happiness will ultimately take him away from me.  In the end you realize your child has grown into a man that is ready to tackle the world and become a productive member of society.  It’s a bittersweet ending but also a time of new beginnings.  And more change to come.

My UFO picture

What is that green light in the sky??
What is that green light in the sky??
This picture has benn lightened.
Same picture lightened to compare with the original.

One of my Christmas gifts this year was a digital camera.  On our way back from visitng family I was shooting some night time pictures in the car.  When I got home and succesfully downloaded them to my tablet (yey!!!) I was very interested in the last picture.  I did not see anything in the sky when I took the picture and I am sure there must be some reasonable and logical explanation for my UFO.

Despite this, it is interesting to imagine  for a second that I have taken a picture of something incredible.

One of the questions I wondered about when I took up photography was: What can I capture with my camera that has not been captured, seen or shared by someone else? Yes, I believe in aliens. No I have never seen one. It is simply interesting to wonder, hope and imagine the impossible.

Live. Dream. Create. Share.