Minneapolismark
12-03-2010, 08:14 PM
My name is Mark Schneider and I am 52 years old. I've had symptoms of Wegener's going back all the way to preschool, but thought they were random events. This included ear infections, massive flare ups of canker sores (100 at a time), double vision, bleeding gums, bleeding sinuses, joint and muscle pain, profuse bouts of sweating, chest pain, panic attacks, loss of voice later in the day, throat constriction that made it difficult to breathe, ringing in the ears etc.
About 15 years ago I felt that something "broke" inside me metabolically and my symptoms became more pronounced. Something happened with my GI tract as well and I began to eat constantly in order to alleviate GI tract pain. Over the next ten years I gained 150 pounds. Everyday life became very difficult. I would start to work in the yard, or get ready for church, do housework etc. and after a few minutes experience restricted breathing, massive sweating, vertigo, chest pains and nausea, so I would stop working and sit down. Doctors could find no cause, so my wife decided I was a lazy liar and eventually left me. This caused a great deal of heartbreak and stress and I had my first major flareup a year or so after she left.
About eight months ago I began to experience severe joint and muscle pain. It was pretty bizarre because it would be my right knee for a few days and then my left ankle. My hands then my stomach, and so on. I had terrible facial pain, dental pain and sinus pain.
I eventually became largely paralyzed, although this too was intermittent. I remember the first time I realized that I was well and truly becoming paralyzed when my mind casually told my leg to swing into the car and the leg just sat there. I had to reach down, grab it and drag it into the car.
I knew instinctively that I was dying and so I poured myself into work as much as I could. My team was managing the technology installation in a new Children's Hospital and I felt that helping sick children was a great final legacy for my life.
Doctors were hopeless. They thought I was crazy because my symptoms were bizarre and changed constantly.
Finally I saw a rheumatologist who diagnosed me during the first interview. I was very, very near death.
I have been on disability now for a little over three months and am making great progress. I am still having severe shortness-of-breath issues along with the sweats and chest pains. Tomorrow I go in for a stress EKG with contrast to see if I can start exercising. I am weaning off Prednisone and will not be sorry to see it go from my life.
I had just started dating a beautiful, intelligent and amazing woman through eHarmony when this flare up started. I told her that she obviously didn't sign up for all this and we could just be friends. She thought about it for a few days and said she was already hooked. Since time looks different when you are borrowing it, we got married last week barefoot on a beach in Florida.
I feel like a jerk for being on disability, but that is what it is there for.
Although this all sounds like a downer, I have never been happier or more at peace than I am right now. I wasn't just a lazy slob who couldn't beat gingivitis. I am not crazy. I am not a liar. I am not weak or exaggerating. I am a man who happens to have a very serious, debilitating and incurable disease.
Now I want to get this all under control and get on with my life.
I wish there was more solid information on the following with Wegener's:
1. exercise (strength, flexibility, endurance, cardio)
2. diet (anti-inflammatory foods etc)
3. understanding which symptoms are drug complications and which are Wegener's complications
4. the role of stress management in recovery
5. how to prioritize my energy "budget" to make sure my basic life requirements are met (cleaning, shopping) and my relationships are sound. (ideas for fun things to do with kids, friends, spouses that don't require much effort or energy.)
6. Tips and tricks to manage life. I bought an iPad when I was in really bad shape so that I could message my care team, order groceries, research, read books, watch TV and movies etc while lying in bed. I was too weak to use a laptop, but the iPad was a wonderful tool.
About 15 years ago I felt that something "broke" inside me metabolically and my symptoms became more pronounced. Something happened with my GI tract as well and I began to eat constantly in order to alleviate GI tract pain. Over the next ten years I gained 150 pounds. Everyday life became very difficult. I would start to work in the yard, or get ready for church, do housework etc. and after a few minutes experience restricted breathing, massive sweating, vertigo, chest pains and nausea, so I would stop working and sit down. Doctors could find no cause, so my wife decided I was a lazy liar and eventually left me. This caused a great deal of heartbreak and stress and I had my first major flareup a year or so after she left.
About eight months ago I began to experience severe joint and muscle pain. It was pretty bizarre because it would be my right knee for a few days and then my left ankle. My hands then my stomach, and so on. I had terrible facial pain, dental pain and sinus pain.
I eventually became largely paralyzed, although this too was intermittent. I remember the first time I realized that I was well and truly becoming paralyzed when my mind casually told my leg to swing into the car and the leg just sat there. I had to reach down, grab it and drag it into the car.
I knew instinctively that I was dying and so I poured myself into work as much as I could. My team was managing the technology installation in a new Children's Hospital and I felt that helping sick children was a great final legacy for my life.
Doctors were hopeless. They thought I was crazy because my symptoms were bizarre and changed constantly.
Finally I saw a rheumatologist who diagnosed me during the first interview. I was very, very near death.
I have been on disability now for a little over three months and am making great progress. I am still having severe shortness-of-breath issues along with the sweats and chest pains. Tomorrow I go in for a stress EKG with contrast to see if I can start exercising. I am weaning off Prednisone and will not be sorry to see it go from my life.
I had just started dating a beautiful, intelligent and amazing woman through eHarmony when this flare up started. I told her that she obviously didn't sign up for all this and we could just be friends. She thought about it for a few days and said she was already hooked. Since time looks different when you are borrowing it, we got married last week barefoot on a beach in Florida.
I feel like a jerk for being on disability, but that is what it is there for.
Although this all sounds like a downer, I have never been happier or more at peace than I am right now. I wasn't just a lazy slob who couldn't beat gingivitis. I am not crazy. I am not a liar. I am not weak or exaggerating. I am a man who happens to have a very serious, debilitating and incurable disease.
Now I want to get this all under control and get on with my life.
I wish there was more solid information on the following with Wegener's:
1. exercise (strength, flexibility, endurance, cardio)
2. diet (anti-inflammatory foods etc)
3. understanding which symptoms are drug complications and which are Wegener's complications
4. the role of stress management in recovery
5. how to prioritize my energy "budget" to make sure my basic life requirements are met (cleaning, shopping) and my relationships are sound. (ideas for fun things to do with kids, friends, spouses that don't require much effort or energy.)
6. Tips and tricks to manage life. I bought an iPad when I was in really bad shape so that I could message my care team, order groceries, research, read books, watch TV and movies etc while lying in bed. I was too weak to use a laptop, but the iPad was a wonderful tool.