Archive for Cushing’s Disease

The Chance to Remember

 

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This week, I celebrated two events that I wasn’t, sure I would see.  My granddaughter turned two a few days ago. That seems like such a simple statement. I have quite a group of grandkids, but enjoying them has not always been easy. My youngest son graduated from high school, and it was as sweet and crazy as the other childrens were.

Why then were these events so memorable?  First, let me tell you about them.  After the ice cream and presents, I saw my older grandkids splashing in the creek trying to catch minnows, crayfish and salamanders. I didn’t give it a thought before I had grabbed two cups and headed for the creek. Because. Of my disabilities, I had to find an easy way in. My grandkids all know that I’m the nature lady- nothing makes me smile quicker than a chance to teach them a nature lesson, whether it is ” how to catch creek creatures”or “what are the different kinds of life cycles among insects?” Today, it was time for creek creature catching!   My oldest daughter loves these nature studies as much as I do and was already at the creek when I arrived. Among the happy shouts of ” I got one!” One of my grands would quietly ask me to catch one for them and let them have the cup to show off their prize.  I was in grandkids heaven as we lifted rocks and I tried o teach children the importance of patience and still waters if you want to catch your prize creatures. I am not sure a tassel of kids between 6 and nine really gets the meaning of patience.  Oh, well, having had six kids of my own, I could work around it. Soon, I was sharing cups with several little salamanders with them, the giggled and splashed and ‘dirtied’ the water as they ran to show them off to the others.

After a lot of hunting, we finally began to find some medium sized crayfish and put them in a bucket. My daughter and I explained how happy we were to see them because the ‘ nutrient rich’ water had killed off a lot of the creek life.  Yes, we had to explain that the ‘nutrients’ were fertilizers that he big houses that had been built used to make their perfect lawns , thus polluting the creeks and killing the creatures that lived there.)

As we worked to collect the creatures, I told my daughter and grands about the days when my mom took me and my friends to my grandpa’s pasture to catch creek creatures, much larger than these because the big houses had yet to overtake the farms. They were sweet memories. My mom, like me was a lover if nature. Rather than having instilled a fear of wildlife in me, she taught me to respect them.  From Black Widows to Black Snakes to water creatures and wild plants, my mom taught me to love them, catch and observe them, then let then go, so we could catch and observe them again. The memories of my mom and I, along with the privilege of sharing such a day with my daughters, sons and grandkids formed a mist in my eyes. You see, I never thought I would be able to do those things again.

Nearly ten years ago, as my 15 year old son was playing baseball, an unbelievable tragedy took him and “life” would never be the same. After a great double and a steal to third base, my lungs were sore from screaming my praises to him. The next kid struck out and soon the teams were practicing for the last half of the last inning. Suddenly someone called out, “What’s wrong with Andrew? ” I looked up to where he was practicing in the outfield and saw he begin to ru towRds me. Instinctively, I began to run to him, meeting close to the pitchers mound as he started to fall, hitting the ground in a swirl of dust. I was in shock. He had not even been sick, to my knowledge. I started screaming, ” Call 911, Call 911, and saw that the father of one of my sons team mates was calling. There was a fire station at the top of the hill and I expected an immediate response, but none came. After coaches and parents rushed up, one person ran up, said they were a nurse and looked at my unconscious son as he asked me questions. My heart, my mind was in a blur- why were there no sirens? Where were the EMT’s who could have walked there by now. Someone asked me his name and gently shook his shoulders, calling his name. No response- no siren or ambulance. I was screaming for the nurse to ‘ do something’ as the clock moved on and my son’s breathing became raspy. Between ten and twelve minutes passed before an ambulance finally came in a back gate- the opposite of the way an ambulance from the close-by fire Department would have come. The EMT’s first words were, ” bag him” ( give him oxygen).

I rode in the front of the ambulance to the hospital. I saw the attendants using a defibrillator on him. My mind was screaming, ” No, no!” I was met by a hospital cleric who lead me away as the ambulance attendants rushed my son in. After working on him for an hour a doctor came out and called our family in to a private room to tell us, ” They did everything they could.”

“You mean he’s dead?” I cried as we all sat in silent stares- our world crashing around us. I walked out the door with an apparently healthy 15 year old son and would walk, completely stunned back in that door without him.

Within a few months, I was having symptoms of what was later to be found to be a pituitary tumor, caused, mostly likely by the stress from loosening my son. This story is not about me, so I will suffice to say that neglect  nearly cost me my life just as someone giving the 911 operator the wrong directions to the ball park had cost my son his life.  By the time I had surgery to remove the tumor, I was told  that without the surgery, I would have had about three weeks to live.

Now, we come to the second part of this week just passed.  I saw my youngest child graduate from high school. He had been barely eight when his brother had died. Graduation is a crowded, long, yet joyous occasion. When the ceremony was over, my son’s girlfriend and I caught up with him and he gave me a ride back to my car when I would meet my husband and two other sons.  I was tired, in pain, yet thrilled for my son.   One more ordinary occasion that I got to witness.

It wasn’t until my son came home late that night that we talked about his graduation that he told me something that I guess I had never realized.  ” Mom, he said, as we sat on his bed, “years ago when you were so sick after we lost Andrew, I had the thought that you would not live to see me graduate. It has haunted me ever since.”

“But I did it.” I smiled as I hugged him. ” Yeah,  you did.” He smiled, holding my hand.

Tonight, as I sat in my room thinking, both of these simple events that I had enjoyed this weekend suddenly hit me. No one, most of all me, ever thought I would play in the creek with my grandkids and even my son had not believed that I would live to see him graduate.  I have suffered so much, so long, it just seemed endless. I still suffer everyday.  Somehow, this past year, I have found a way to bring joy back into my life, if even for a short time.  I told my son that it was his holding me close, willing me to live that had helped me  ” make it” this far. I thought of the song that I had heard on my Facebook page that some kids sang to their teacher who had cancer. it was called, “I’m Gonna Love you Throught It”.

That is just what my son, my kids and grandkids and my family had done for me. Through all the loss I had endured, the disability, the never- ending pain, I would feel their love and know that somehow, they still needed me.

As I found myself scratching the poision ivy on my arm tonight, I thought that even being able to work in my garden again was a blessing.  Maybe, I was still here ‘ for a reason’. The sweat running down my itchy face felt amazingly good somehow. I new life would never hold the same joy that it had when my son was alive and I was well, but I was still here, and I was determined, at last to be thankful for that!

 

 

 

 

 

 

 

 

 

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Reflections of Life’s Passages (click song at end to listen while you read)

        DSCN2720     The mirror reflects back a “me” that I no longer know.  She isn’t young, My health was decimated by the loss of a child. Even my youngest child has a car, a job and a girlfriend now.  The years since I lost my son and health have completely changed me. I have known this for a long time, but held out hope that time would at least partially repair the wounds .Allow me to explain the crisis that lead to these reflections.

I have come to a point where I do not see that happening.  I raised six children. Raising them, loving them, teaching them was not only my dream, it was my life. I home-schooled them on vacations, Saturdays and in summer. The youngest one was home-schooled full time for several years. With a large family, there is little time to worry about what “you” want or even need. I lost my best friend to cancer when we were 48-two years before I lost my son.

I worked in the children’s schools as they grew up, as an assistant, a volunteer, and a substitute.  My life was filled with ball games, dance lessons, band and activities that revolved around them. Since i was a stay-at home mom in summer, I would have up to 14 kids at my house in one day.  I admit it was hectic. I suffer from migraines and it often took everything I had to be the kid of mom I strived to be,

Even today, my kids say that I was a terrific mom, that now as parents themselves, they don’t see how I did it.  I worked my way through a university while raising two kids as a single parent.  It seems I found endless energy and patience somewhere.  I only wish I could find that place today.

When I lost my health from Cushing’s Disease, it was determined to be from the trauma of my loosing my son.  Being a mother WAS my life.  Loosing him was unthinkable, unbearable.  It was at a time when my older kids were going to school, getting married, having their first child, and I was at that age a woman faces when she realizes that “youth” is no longer with her.  My grief, my problems were not recognized by anyone but me.  I would hear, “It’s natural that you are greived over your son, that your children moving away is difficult, but you will, in time adjust.”  I didn’t believe it then, and when I had heart failure eight months after my childs death, I knew that I had been right all along. I really was sick. The heart doctor started doing tests and wrote a report to my regular doctor that month, saying that I had the classic symptoms of Cushing’s and should see an endocrinologist.  Evidently, my regular doctor never read it.  When I went to my cardiologist in January and he asked me what the endocrinologist had  said, I told him that I had never been referred to one. He was astounded. I ordered a copy of my medical records from my regular doctor, and there, right on top was the letter from my cardiologist. Apparently, it had never even been read, just stuck in my file.

The cardiologist immediately sent me to an endocrinologist and after many test, Cushing’s Disease (sometimes called Cushing’s Syndrome) was confirmed.  She told me the only way to get well was pituitary surgery, which meant going into my head through my sinuses, and into the area right below my brain, where the pituitary  gland sits.  I was terrified. Why was all his happening to me -loosing my son and then my health  as well?

When I was finally accepted at an out of state facility for pituitary surgery, I was told that the tumor was wrapping around my carotid artery and I would have probably had less than 3 weeks to live.  It had now been a year and a half since my son died.  Not long after he died, I started a slow process of gaining weigh, although I couldn’t eat and watching my long hair thinning out, I was nauseous all the time. I could hardly walk, using a cane  to steady myself. It took months after the surgery to even begin to recover.  The joyful events I should have been enjoying had been taken from me, yet I felt that no one could really comprehend what I was going through.

As I mentioned, my youngest child was only eight years old when his brother died, He was my rock. He needed me, he didn’t care if I didn’t have a lot of energy, he played with friends, with siblings, and most of all supported me.  Now, he, too has grown up. I wonder, tearfully , how much he remembers about his brother. They were so close. His brother and I were so close. When the time came for my son to get his drivers license, he was going to college in the afternoons and high school in the morning. He started dating, and, like all children growing further away from needing mom.

I continued to try to make a small garden. I had been taught the love of gardening as a child and loved sharing the study of nature, plants, insects, amphibians, reptiles and even arachnids with my children. Even  when pregnant, working and  and tired, I would find time to have a large garden. It soothed my soul. I could enjoy the bounty of anything from spring strawberries to autumn pumpkins. Now,  I was so weak, I could hardly make it to my garden. I was not able to work in it long at a time.  I watched as my beautiful garden got less and less attention.

Cushing’s affects your whole body, especially if left untreated as long as mine was. My endocrinologist described my bones as like “chicken bones”-terribly fragile. I broke my hip in a simple fall simply because I went down at an odd angle on my fragile leg. My digestive system has continued to be a problem. I feel sick when I eat, I have severs scoliosis and and in constant pain. from my neck and back to my hips. My feet are numb, my face is numb from the pituitary surgery, my hip has cramps so bad, i can only compare it to natural childbirth-without the joy of your baby at the end of the immense pain. Even though I have made some improvements in my strength, I know I will always have the symptoms of Cushings knocking at the door. For a time, It took small steps and a cane or holding on to something to navigate a room, My goal was to reach my son’s grave, on a hillside, without help.  I felt like I was climbing a mountain, but one day, I made it and it became a place of solace for me. I find letters and mementoes there from others-his many friends, even now, after eight years,a wedding invitation, a Carolina memento, a black rose. I put Victorian statuettes of a mom and son watching younger children sleigh ride, or laid a baseball there, maybe holiday rememberances. Even though I never liked baseball, he died between innings in a game he didn’t want to play, so I had “Safe at Home” carved on his black obsidian stone to help us remember that his last hit was one of the best he ever made.  Many years ago, I put a heavy chain with eight links on it around the flower pot-to symbolize that there would always be eight people in our family. I find messages from him there, I have written about them in other blogs-things only he and I would understand. Black widow spiders that we studied, dimes,(that one is secret), feathers from a bird killed by predators.

Every day is a struggle. I feel like I was cheated out of enjoying the years of my other children’s lives when they were maturing, going to college, marrying, having their own children, living, laughing, just regular things. I am having a difficult time accepting that my youngest child is not now, that youngster who helped me so much and needed me-no matter how poor my health is.  Now tthat he is older, I depend on him for other things.  He is just doing what young people do-grow up, just as my older kids were doing when their brother was so wrongly taken.  I know that, but it still hurts.  I have to find the strength to do things with him that I am often not really able to do. I have had to learn not to expect to be “mommy” after 40 years. It is more difficult than I can describe.

Looking into the mirror of my life’s struggles has affected me in many ways. I think of my friend who died at 48, after struggling with cancer for 15 years and I am thankful that I was a least here to witness the maturing of my family. I fight the anxiety and stress of not being able to do for my family what my heart longs to do. I smile when my older children sing the songs to their kids that I sang to them, or one of them remembers a book we read together. I walk in the park with them as they tell them the names of insects and flowers we studied so many years ago.

I have given up on having even the people who love me, and that I love, truly understand what I have been through and why I am less patient, more emotional, not as strong as I once was. I can only hope that one day, when they remember “me”, they remember the “me” that I was when I had all of my children, when I was young, healthy and strong. I hope that as all of us grow older and struggle to keep up with the things that made us who we are, that our children, our loved ones, realize that those thing are still there, inside of us. Our hearts have not changed, our love is just as strong, even when our bodies have failed us.  

Once in a while, I have a good day, and can almost do the things I once did. What a joy to be “me”, if only for a while.  I still listen to my Lynyrd Skynyrd and other Southern Rock music.  I still love long hair and blue jeans.  I am still me. Those who know me, please, remember that. Inside, I am strong, proud, loving. Outside, I still manage an incredible amount of accompishments, difficult, though they may be.  If the sun is covered by clouds, it is still there. I am still there. Remember that.

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