He had had knee surgeries and they found what they called a hemangioma when he was 19 or 20. He had a surgery to have it removed from his knee. There was no physical therapy. He was stuck in bed for months healing. He ended up having another surgery within a year or 2. This time they were repairing damage to the cartilage. That time he had physical therapy and didn't anticipate having any more problems. He was told that his knee was like the knee of a 60 year old man and would probably always cause him pain.
By the time he was 26 he was married to me and we had 4 children. His knee was causing him a lot of pain. He had another surgery on the cartilage in his knee. The hemangioma was renamed a venous malformation. It was back and we learned that it was bigger than anyone had imagined. It went up into his thigh. Removing it was not an option. So, they did alcohol injections to cauterize it and stop it from growing. It seemed to help. The doctor said the only way to stop the pain in his knee was to fuse the bones together and then he would not be able to bend his knee anymore. Antar didn't even have to think about that. He said no.
On February 16, 2000 he was 31 years old. It was our youngest child's 7th birthday. We got distracted. Antar woke up and his right leg was swollen so much that it was red and looked almost twice the size of his left leg. He never returned to work. He began a journey to diagnosis. He had a venogram at the University of Utah and we saw that there was more vein than muscle in his right leg. We were told he had Klippel Trenaunay Webber syndrome. He became the stay at home parent collecting social security. That wasn't enough to live on so I went to work.
I started at PageNet and within months I was at a brokerage company. While I was there I developed a bad cough. It would get worse when I was at work. I worked in a call center. My doctor couldn't figure it out. The stress of it made me suicidal. I ended up in a 28 day inpatient program at a mental health center. That helped. I was diagnosed with acid reflux while I was in there. That took care of my cough. But it didn't cure everything. I ended up in an outpatient program for a month in Arizona because of my anxiety. I finally got both my physical and mental health under control and was a top performer at work.
Then it was September 11, 2001. I was in Utah but that rocked the world. I didn't know what the world trade center was before that day. I thought my aunt was at the pentagon. I left work. I picked up my children. Everyone told me that I was going against what the president of the United States wanted. I told them I was doing what I needed to do. We spent the rest of the day huddled in the living room watching the coverage on TV. My aunt called me the next day and told me that she wasn't working in the pentagon. She was in a different building. But she had a lot of friends in the pentagon and she was hurting. Over the next several weeks there were bomb threats and evacuations, even in Utah. In October 2001 I was dismissed from my job along with over 600 other employees.
We moved to Henderson, Nevada so that I could find a new job. I went into insurance. We did well for a while but in 2003 we discovered that the health care in Nevada was not up to par. I was telling the doctors in the emergency room how to treat my husband. That is around the time that I first experienced numbness in my arms and chest.
We moved to Rochester, Minnesota to get better medical care for Antar. It turned out that he had been having strokes and he had venous malformations bleeding into his colon. The doctors sealed the holes in his colon and closed a hole in his heart. He stopped taking a medication that was causing strokes. He had brain damage.
Shortly after we arrived we learned that our 12 year old son was having heart rhythm issues. He had several heart procedures. One during the same month as his dad.
I found employment at another brokerage company. I was there for a little over a year before I had to go on disability myself. I had debilitating abdominal pain. That caused depression. Symptoms just started piling on.
Antar found out he didn't have Klippel Trenaunay Webber syndrome. He was being treated by a pediatric cardiologist. He was told that he had multiple venous malformations. They were everywhere in his body from the bottom of his feet to the optic nerve. The best treatment he had was blood thinners but they decided it was too dangerous and stopped. He had some external malformations removed. We learned from his family that he had one removed from his neck when he was 2. There was nothing more to do.
He tried getting a real estate license. He failed the exam by one point. But he didn't have the strength to try again.
He got a diploma in auto mechanics but was only strong enough to fix his own car and sometimes help friends.
For years there was really nothing fulfilling he could do.
I acquired high blood pressure, asthma, diabetes, and rashes in addition to my fibromyalgia, chronic fatigue and depression/anxiety.
Antar and I each went through a program at the mayo clinic to help us deal with pain. I also went through a program to help me with fibromyalgia.
I was diagnosed with pelvic floor dysfunction.
We decided to move to Arizona because my parents were getting old and Antar thought he would feel better in a warmer climate.
After we arrived in Arizona we learned that with both of us on Social Security we made too much money to get medical assistance. We could not live without healthcare.
I returned to work. I did surprisingly well. I worked in finance. We stayed there for almost 4 years. My health suffered. My liver got worse. My doctor thought it was cirrhosis. I had another abdominal surgery. I was sick a lot. I managed to work and go to school.
All of our kids got married and we started having grandchildren.
Our oldest daughter and her husband prepared a powerpoint asking us to come live in their basement in Utah. I wanted to say no but my husband thought it was a good idea. So, we went. It was a good decision. I went back to the brokerage company I had left 13 years earlier. I loved my job. I was doing well.
A few years later my health got so bad that I was forced to go back on disability. I was diagnosed with Sarcoidosis and Dysautonomia and my Asthma got so bad that it sometimes felt like pneumonia.
For 3 years I have looked for answers. I searched for that magic pill that doesn't exist. There's only one treatment that might work for me but my insurance won't pay for it. My doctor says it's because they don't understand the orphan status of my disease. I finally got there. There is nothing more the doctors can do.
Fortunately for me my husband had dealt with this years before. It hurts so bad. It is devastating. When there is no treatment it removes hope. Without hope.....it is really hard. It feels dark.
The secret is to find ways to have hope anyway. That's why I believe in spiritual coaching, intuition, crystals, oils, burning sage, spells, ceremonies... If a story makes you feel good, it's a good story. I fill my life with good stories. That is where my hope comes from.
