Advocates on Steps of Congress 2013
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My Life with Scleroderma

By Teresa Nadeau

I was born and raised in Montgomery, Alabama.  I am part of a large close Catholic family. My amazing parents were very devout, loving and fair.  They sent me, four brothers and my sister through 12 years of Catholic schools.  All six of us graduated from college.  I grew up happy and secure.  I attribute my first 18 years of being guided by my parents and teachers and loved by my family in giving me the strength to survive Scleroderma.

I went to the University of South Alabama. I finished college, got married, and found a great job teaching third grade in Mobile.  I had a pretty good life going on.  I looked forward to every day.  I had lots of friends. I had a lot of hobbies. And, I had a ton of energy. I loved all kinds of arts and crafts.  God had blessed me with a creative mind and good hands.  I liked to design and sew clothes, draw, sculpt with clay, paint and cook.  I had learned how to work with stained glass. I designed and made both copper and silver jewelry.  I was learning photography.  God had also blessed me with a healthy body.  I was always small but I wasn’t skinny and for my size I was very strong.  Remember, I had learned to hold my own with 4 brothers! I liked to work out at the gym just to stay fit and healthy. All of my life, I had loved to be outdoors.  In the fall and winter I loved to canoe, camp and tromp around in the woods. In the spring and summer, I was a beach girl.  I loved to fish the Mobile Delta and the Gulf of Mexico. I was even learning how to hunt and call turkeys. I was not a fabulous athlete but I could compete well enough in Frisbee, softball and tennis.  In backyard basketball, I had perfected an outside corner shot that often helped me win at the game of HORSE. These were things I loved to do and were so much a part of my life and who I was. These are some of the things Scleroderma took away from me.

It was during a summer break from teaching when I woke up one morning and both of my knees were really hurting.  From that day on, my life began changing drastically. The pain in my knees never let up and moved to all parts of my body.  By the time school started back in the Fall it hurt to walk and it was hard to get up from a chair.  After multiple doctor visits, a rheumatologist gave me the news. I had Scleroderma.

I remember the last game of tennis doubles I played with my girlfriends. Every time the ball hit my racket, pain seared through my hand. When I walked off the court I knew I would never play again. The last time I went fishing I couldn’t really grasp the rod. I laid it down in the boat. I didn’t want to cast my favorite rod and reel overboard. I jumped off the end of a pier one day and thought I would drown before I could make it back to the ladder. I had not realized how tight the skin had become under my arms and across my shoulders. I couldn’t swim anymore. My hips and thighs became too tight to walk up stairs or take big steps. 

At the end of the next school year I had to quit teaching.  Within what seemed like a short time I was no longer able to dress myself or drive a car.  I had never been a depressed type person but this was a very hard time in my life.

The disease progressed rapidly. Every day there was something new to deal with. I had to hire a caregiver.  The uncertainty and the stress were taking a toll on my marriage. The pain spread to more and more parts of my body. I developed multiple ulcers on my fingers, toes, elbows and down my back. It was not unusual to have 30-40 ulcers at a time. As the skin tightened it itched and burned. My hands were so swollen and inflamed most people thought I had been burned. As my jaw receded my teeth became loose and I had trouble eating. My esophagus became so small I could hardly swallow. My face had changed so drastically, I scared little children. Friends and people I knew didn’t recognize me. My thick wavy hair was thin and scraggly. I couldn’t brush it. I couldn’t bathe myself, dress myself or feed myself. I couldn’t get in or out of the bed without help. I got to where I was too weak to do much of anything.  I couldn’t even sign my name. I was very sick.

My biggest enemy was and still is pain.  It had gotten to the point that if someone just bumped me, it would bring tears to my eyes.   I would close my eyes and imagine Christ hanging on the cross.  I would think of the nails tearing through the tissue in His hands, and how the bones would tear away as the weight of His body stretched down toward the ground.  Nails piercing the tops of His feet must have sucked His breath away.  A gouge in his side.  Thorns in his head.  How did He do this?  Why did He do this?  He did it for me.  He did it so that I could go to heaven.  Thinking of this, concentrating on this, my pain wouldn’t feel so bad.  At least I didn’t have nails hanging my body to a cross, stretching and tearing my tissue.  I used this image often.  I still use it today.  I thought of His Mother at the foot of the cross.  Her son, her dear son, had been ridiculed by dozens and dozens of people then crucified like a low down criminal.  Her heart ached for him.  Her son had died.  I felt like part of me had died.  I was so sad.  I was embarrassed at how I looked.  My body was bent and twisted.  My hands looked like claws.  I was so skinny, just skin and bones.  My jaw was pulled back.  My teeth were crooked and they stuck out.  I lost my pretty looks.  Walking was slow and painful.  I really needed a wheelchair.  I prayed for help.  Sometimes I prayed so hard I would get light-headed. 

My family and I thought I was dying. I felt like I was dying. I spent a lot of time in the bed.  I couldn’t do much else.  I spent most of my days alone.  Everyone else was at work.  I had a lot of time to think and think I did.  I didn’t think much about actually dying. That was a little bit scary and too many ‘what if’s”, but at the same time I wasn’t afraid of dying.  I was really sick.  Scleroderma has no cure.  I was suffering.  I was scared of living.  I thought about my family and my friends.  I wondered what their lives would be like.  I thought about the graduations, births, weddings and fun outings I would miss.  I thought about heaven.  I decided heaven is going to be more awesome than I am able to even imagine.   More beautiful, more happy, more joyful.  Perfect. This excited me.  I wondered what God would say to me.  I hoped He would let me in. 

It was a bright clear day.  I had a big window in my bedroom and the room was lit up with sunshine.  I was in the bed, watching the ceiling fan go round and round and I was talking to God.  As clear as the day I got a message from God. His voice didn’t boom out across my room but I knew He was speaking to me.  I knew, at that moment, that I was not going to die. Not right then anyhow.  It was overwhelming.   I felt it grab my heart muscle.  I was excited. I was really happy!  From that day on I knew I wasn’t going to die from Scleroderma, I was going to live with Scleroderma.

Now the hard part really began.

Now that God told me I wasn’t going to die, I had to get out of my house.  For the last two years I had mostly stayed inside.  I didn’t like mirrors and I didn’t like cameras. Before leaving the house to go anywhere, I would pray to God for strength.  I would pray that Mary would wrap her cloak around me and protect me.  I developed a strong relationship with my Guardian Angel.  I gave him a name and asked that he never leave my side.  I had to build up some thick skin to go out my door.  People made fun of me right to my face.  People stared, people gawked.  Some little kids were scared. People treated me as if I were contagious or mentally slow.  I still find it amazing at what some people say to me.  I hated being in a wheelchair.   I had my feelings hurt more than once but I kept praying. “Give me strength God.  Give me strength.”   It took a while to build real confidence. Today, I’m fine.  I go where I want, when I want. If people treat me ugly, I know they are the ones with issues.  If people don’t like the way I look, then they don’t have to look at me.  If they don’t want to be around me, that’s their problem.  They can leave.  I’m a child of God and a human being on this planet.  I belong. Just like everyone else. 

Do I ever get mad at God?   I don’t get mad at God anymore.  Sometimes His sense of humor gets to me.  Things happen and I ask, “Really, Lord?”  Sometimes I get frustrated with how much He still puts on my plate but when that happens I just hand it back to Him and say, “Okay, I’ll try, but You’ve got to help.” 

Did I ever get mad at God?  Oh yeah!  Yes!!  I wondered WHY?  I had been a good person.  Why was this happening to me?  Why was God doing this?     Why would God give me so much artistic ability and then take my hands away?  God gave me good looks and a pretty face.  Now I was scrawny and freaky.  I was physically fit, now I had to have a team of caregivers. Like my Dad, I was a good storyteller.  Now I couldn’t speak clearly. God told me I was going to live but like this? What was I supposed to do now?  But every time I’d get mad and pitch a little fit with God, I would be blessed with a sense of peace.  I am not a bad person.  I didn’t do anything wrong.  I’m not being punished.  The devil is not in me. It’s not a burden God gave me to get a ticket to heaven.  Everybody has some burden.  Living with Scleroderma is just what happened to me.  It is my life.  One day I hope to go to heaven.  I know heaven will be glorious but for now, I have a happy life here.

I look at myself as Uniquely Weird.  I do not mind being just a little bit different.  I would not choose it, but, it could be worse. I still have talents I can share.  I’m still a bit feisty and I do like to have fun.  I sometimes think I have more than my share of dopamine and norepinephrine.  It’s a great blessing, really.  I’m just happy.  I know I’m blessed.   I start each morning with the simplest prayer, “This is a day the Lord has made.  Let us rejoice and be glad in it.”  Sometimes, if I’m still half asleep, I have to repeat it over and over until it is in my heart.  THIS IS A DAY THE LORD HAS MADE.  LET US REJOICE AND BE GLAD!  Yeah! Rejoice!  Be Glad! God gave us another day and this WILL be a good day.  I believe it.  You should too.  It will make life easier.  Every day is a blessing.  I know each day won’t be perfect but remember, there are no problems, only situations.  If an adverse situation comes up, I try to put it in perspective.  In the whole scope of things, how much does the situation really matter?  Is it really worth getting upset and unhappy over?  Most likely, not.  I do what I can to make it better but I always rely on God’s hand to calm me down. 

During each day I TRY to be kind and thoughtful.  I have my moments, but I do try.  We all know the Golden Rule.  “Do unto others as you would have them do unto you.”  I take this rule seriously.  God created each of us in His image and likeness.  God is in everyone. I want others to treat me nice.  Nice matters.  I try to treat others the way I need to be treated.  Believe me, being nice will make your day easier.  Forgive people who break these rules.  You don’t have to forget, but in the long run, you’ll be happier with yourself, if you forgive. Forgiveness liberates the soul.

For each task or project I take on, I try to do it well.  My Dad would say, “Do it with vim and vigor.”  Doing even the simplest task well gives me satisfaction.  A sense of satisfaction makes me happy. I try to think positive and be positive.  God created this magnificent universe out of love.  It is full of positive energy.  I try to pull in this positive energy. I remember the angels and saints.  They are positive energy.  I ask them to send me energy.  And most of all, I let the Holy Spirit be a guiding force in my life. 

These are just some of the wonderful things I’ve learned after living 57 years and having over half of these years complicated by an ugly disease. I am a lucky person.  Good things are always coming my way.  I am often amazed at how many good things happen to me.  Little things, big things, they all seem to work out well.  I have a wonderful family, sweet caregivers and great friends. I am smothered in blessings.   When I was a young woman, I certainly did not imagine my life like this.  It is NOT what I wanted. But, it is what it is. So, make God your friend. Live each day with vim and vigor. Think positive. You’ll be happy.  God is my friend.  My life is good.  

 

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