MindyWG1999
04-22-2014, 05:11 PM
Hello Everyone! Here is my WG'S story.
- February 1999.
A family trip to a cold thawing beach to locate rocks for the framing of a small rock garden for my mother. This would turn out to be the noticeable beginning of my Wegeners.
Walking along the beach with my dad Sheldon, two of my brothers and my mother Carole, searching for the perfect sized rocks. Gathering two and three at a time and placing them in the trunk of our car. After picking out only two trips worth back to the car I became fatigued and very sore. Knowing we were almost done I told my dad I just wanted to sit in the car while they finished. As I began to position myself in the backseat I realized just how cold I was. Grabbing a nearby blanket I curled up and shut my eyes. After what felt like hours I opened the car door to tell my mom that I really wasn't feeling well, I needed to go home. Quickly she rounded everyone up and off we went. I remember groaning and moaning all the way home, expressing my extreme pain. Once arriving home I had begun sobbing. I was helped out of the car and escorted to the stairs leading to my bedroom. My mother told me to head up to my room and she would be up with some flu medicine for me in just a moment. I crawled up two stairs and collapsed to my knees from the overwhelming pain in my right foot. Screaming in pain I yelled for help. My dad ran to my aid. Once he had seen I had collapsed he begun to lift me. I screamed in even more pain, so he rested me back on the stairs. Through the tears I whispered... "my foot, it's my foot." As I was telling him where the pain was I glanced down and saw that my foot was swollen at least 5 times it's normal size. By this time my mother had come around the corner and very calm and collected she told me that she was going to take me to the ER. - The rest of my life would change in that moment.
I went to the ER that afternoon and it was the last time I saw my own bedroom for almost two years. I was admitted after being seen by the ER doctor. I had xrays, cat scans, blood work... every test possible. I spent nearly three months on the pediatric floor. I was diagnosed with pneumonia, leukemia... just to name two. They had no clue what this was, not a clue!
I come from a very small town and no one had ever even heard of Wegeners before. While they kept running tests I became increasingly worse. I was temporarily and spiratically losing my sight, my hearing and my voice... I was having nose bleeds with the slightest of movements. I was coughing up large amounts of blood and peeing out blood clots the size of plums. Swelling was spreading rapidly and there was no diagnosis in sight. On May 8th 1999 a specialist from Australia was called in, as they were stumped and I didn't have much longer to live. In fact the doctors had called in councilors for my family as they were about to be told I had a very short time left and they needed to say their goodbyes.
The Doctor from Australia arrived 2 days later. This Dr. sat at the bottom of my bed for nearly 60 hours straight looking through every medical book he could find until he stood up. As he stood he looked at me, a look I'll never ever forget. He walked over to my bedside and leaned down and placed his hand on my face and smiled. On May 13th, my mother's birthday I was transfered to another hospital in the city of Halifax N.S. As per the Australian doctors orders. I was placed in the ICU and started to notice more and more family members arriving to see me. To say goodbye.
Miracle! I was diagnosed positively without a doubt with Wegeners! I was now to undergo an extreme amount of drug infusions. 150 mg of Prednisone, 200mg of Chemotherapy, 100mg of Septra, 100mg of iron... etc.
I remained in the ICU for another 3 weeks and then finally move down a floor to the pediatrics. This is where I would stay now until the day I was released in January 2001.
I've since been diagnosed with Subglottic Stenosis and extreme Osteoporosis (that of a 70 year old woman) I've had more than 65 tracheal dilatations in my 13 years with SS. However for unknown reasons I have been SS free since 2010. The only thing that changed in my life style was I started smoking cigarettes weeks before I was due to have a dilatation. I never ended up needing that dilatation or any others since. (I started smoking to help end a bad marriage... very long story... He hated smokers and was abusive so I started smoking to become repulsive to him.)
Me now-
I am now 31 years old, two beautiful kids of my own ages 7 & 9 and two amazing step kids ages 7 & 10. I am with the man of my dreams and have become the strongest person I have ever known. I've been asked many many times : If I could go back in time and choose to not have Wegeners would I?
NO! NOT A CHANCE! I would never change what I've gone through. It's made me the person I am today. I was chosen to have this disease for a reason. It's my gift. A blessing.
I will finish off with telling you all that this disease is not the monster. You are! Wegeners is weak... grab it my the throat and strangle the bastard!!!
Cheers guys. Keep strong. We've got this!
I've been blessed with only one small flare in my 15 years. I've been in my second remission now since October 2011.
Mindy - DX May 19th 1999.
Mindy♡
- February 1999.
A family trip to a cold thawing beach to locate rocks for the framing of a small rock garden for my mother. This would turn out to be the noticeable beginning of my Wegeners.
Walking along the beach with my dad Sheldon, two of my brothers and my mother Carole, searching for the perfect sized rocks. Gathering two and three at a time and placing them in the trunk of our car. After picking out only two trips worth back to the car I became fatigued and very sore. Knowing we were almost done I told my dad I just wanted to sit in the car while they finished. As I began to position myself in the backseat I realized just how cold I was. Grabbing a nearby blanket I curled up and shut my eyes. After what felt like hours I opened the car door to tell my mom that I really wasn't feeling well, I needed to go home. Quickly she rounded everyone up and off we went. I remember groaning and moaning all the way home, expressing my extreme pain. Once arriving home I had begun sobbing. I was helped out of the car and escorted to the stairs leading to my bedroom. My mother told me to head up to my room and she would be up with some flu medicine for me in just a moment. I crawled up two stairs and collapsed to my knees from the overwhelming pain in my right foot. Screaming in pain I yelled for help. My dad ran to my aid. Once he had seen I had collapsed he begun to lift me. I screamed in even more pain, so he rested me back on the stairs. Through the tears I whispered... "my foot, it's my foot." As I was telling him where the pain was I glanced down and saw that my foot was swollen at least 5 times it's normal size. By this time my mother had come around the corner and very calm and collected she told me that she was going to take me to the ER. - The rest of my life would change in that moment.
I went to the ER that afternoon and it was the last time I saw my own bedroom for almost two years. I was admitted after being seen by the ER doctor. I had xrays, cat scans, blood work... every test possible. I spent nearly three months on the pediatric floor. I was diagnosed with pneumonia, leukemia... just to name two. They had no clue what this was, not a clue!
I come from a very small town and no one had ever even heard of Wegeners before. While they kept running tests I became increasingly worse. I was temporarily and spiratically losing my sight, my hearing and my voice... I was having nose bleeds with the slightest of movements. I was coughing up large amounts of blood and peeing out blood clots the size of plums. Swelling was spreading rapidly and there was no diagnosis in sight. On May 8th 1999 a specialist from Australia was called in, as they were stumped and I didn't have much longer to live. In fact the doctors had called in councilors for my family as they were about to be told I had a very short time left and they needed to say their goodbyes.
The Doctor from Australia arrived 2 days later. This Dr. sat at the bottom of my bed for nearly 60 hours straight looking through every medical book he could find until he stood up. As he stood he looked at me, a look I'll never ever forget. He walked over to my bedside and leaned down and placed his hand on my face and smiled. On May 13th, my mother's birthday I was transfered to another hospital in the city of Halifax N.S. As per the Australian doctors orders. I was placed in the ICU and started to notice more and more family members arriving to see me. To say goodbye.
Miracle! I was diagnosed positively without a doubt with Wegeners! I was now to undergo an extreme amount of drug infusions. 150 mg of Prednisone, 200mg of Chemotherapy, 100mg of Septra, 100mg of iron... etc.
I remained in the ICU for another 3 weeks and then finally move down a floor to the pediatrics. This is where I would stay now until the day I was released in January 2001.
I've since been diagnosed with Subglottic Stenosis and extreme Osteoporosis (that of a 70 year old woman) I've had more than 65 tracheal dilatations in my 13 years with SS. However for unknown reasons I have been SS free since 2010. The only thing that changed in my life style was I started smoking cigarettes weeks before I was due to have a dilatation. I never ended up needing that dilatation or any others since. (I started smoking to help end a bad marriage... very long story... He hated smokers and was abusive so I started smoking to become repulsive to him.)
Me now-
I am now 31 years old, two beautiful kids of my own ages 7 & 9 and two amazing step kids ages 7 & 10. I am with the man of my dreams and have become the strongest person I have ever known. I've been asked many many times : If I could go back in time and choose to not have Wegeners would I?
NO! NOT A CHANCE! I would never change what I've gone through. It's made me the person I am today. I was chosen to have this disease for a reason. It's my gift. A blessing.
I will finish off with telling you all that this disease is not the monster. You are! Wegeners is weak... grab it my the throat and strangle the bastard!!!
Cheers guys. Keep strong. We've got this!
I've been blessed with only one small flare in my 15 years. I've been in my second remission now since October 2011.
Mindy - DX May 19th 1999.
Mindy♡