The Road to Diagnosis
For five years I’ve been struggling. It started with my walk becoming strange. Then I started falling. I was getting tired after little activity. I went to doctors where I was first told it was nothing, then a vitamin B deficiency, rheumatoid arthritis, fibromyalgia, and later nerve damage caused by something unknown. Things kept getting worse. Walking was becoming very hard. I was told I had to be checked for a brain tumor, multiple sclerosis, and a body structural issue. I had countless x-rays, MRIs, and EMGs where I had electric shocks run through me to test my nerves and then long needles stuck into my nerves to see how they responded. Finally a team of wonderful doctors at USF diagnosed me with Amyotrophic Lateral Sclerosis (ALS)
What’s next?
ALS is a disease with no cure. The only treatment is to treat the symptoms. My body is becoming paralyzed and when it reaches my lungs and diaphragm I will die. You’d think I’d be sad and depressed by this. I’d be lying if I said I didn’t feel that way sometimes. Mostly though, what I feel is free. I know my time is limited and I know I can’t put anything off. I’m setting goals like working as long as I still can, a bucket list that includes traveling with friends and family, and I’m going to Fight this with Everything I have. My past doctor bills have been hard to manage but I’ve done it. Now things are going to get really expensive. I can’t afford the van I need that will be accessible for my wheelchair and hand controls. I can’t afford a living space that will be accessible, I can’t afford the assisted living I’ll eventually need.
Hope
I’d be terrified of this burden except that I know God has it under control. I was assured of this when my friends demanded I open this page. One of them even set it up for me and then made me write this message to you. They said we can get help for the things you need. You are a fighter and you aren’t letting this get you down. I was raised to be a hard worker. To earn what you get and be happy with what you have. Letting this page be made was hard for me. Then I remembered a story told to me.
There was a flood and a man trapped climbed to his roof. A woman in a big SUV drove by and told the trapped man to climb down so she could drive him to safety. He declined saying, “God will save me.” After a while a boat came by and the person in it yelled, “Come jump in my boat. I’ll get you to safety.” But the man stayed on his roof saying that God would save him. The water kept rising and a helicopter came to him, tossed him a rope, and said, “Tie that around you. We’ll get you to safety.” But he still refused, knowing God would save him. He then drowned and went to heaven. He looked up into the loving face of God and asked, “Why didn’t you save me?” God replied, “Well, I sent you a car, a boat, and a helicopter!”
Lucky for me I have friends and family that support me and force me to do things like this. They care for me and they are with me for this fight. They are why you are reading this now. I hope you can help. If not please feel free to pass this along. And more than anything, please pray. This is a disease that many have and there is no cure. Pray that those going through the same ‘flood’ will have a cure soon.
For five years I’ve been struggling. It started with my walk becoming strange. Then I started falling. I was getting tired after little activity. I went to doctors where I was first told it was nothing, then a vitamin B deficiency, rheumatoid arthritis, fibromyalgia, and later nerve damage caused by something unknown. Things kept getting worse. Walking was becoming very hard. I was told I had to be checked for a brain tumor, multiple sclerosis, and a body structural issue. I had countless x-rays, MRIs, and EMGs where I had electric shocks run through me to test my nerves and then long needles stuck into my nerves to see how they responded. Finally a team of wonderful doctors at USF diagnosed me with Amyotrophic Lateral Sclerosis (ALS)
What’s next?
ALS is a disease with no cure. The only treatment is to treat the symptoms. My body is becoming paralyzed and when it reaches my lungs and diaphragm I will die. You’d think I’d be sad and depressed by this. I’d be lying if I said I didn’t feel that way sometimes. Mostly though, what I feel is free. I know my time is limited and I know I can’t put anything off. I’m setting goals like working as long as I still can, a bucket list that includes traveling with friends and family, and I’m going to Fight this with Everything I have. My past doctor bills have been hard to manage but I’ve done it. Now things are going to get really expensive. I can’t afford the van I need that will be accessible for my wheelchair and hand controls. I can’t afford a living space that will be accessible, I can’t afford the assisted living I’ll eventually need.
Hope
I’d be terrified of this burden except that I know God has it under control. I was assured of this when my friends demanded I open this page. One of them even set it up for me and then made me write this message to you. They said we can get help for the things you need. You are a fighter and you aren’t letting this get you down. I was raised to be a hard worker. To earn what you get and be happy with what you have. Letting this page be made was hard for me. Then I remembered a story told to me.
There was a flood and a man trapped climbed to his roof. A woman in a big SUV drove by and told the trapped man to climb down so she could drive him to safety. He declined saying, “God will save me.” After a while a boat came by and the person in it yelled, “Come jump in my boat. I’ll get you to safety.” But the man stayed on his roof saying that God would save him. The water kept rising and a helicopter came to him, tossed him a rope, and said, “Tie that around you. We’ll get you to safety.” But he still refused, knowing God would save him. He then drowned and went to heaven. He looked up into the loving face of God and asked, “Why didn’t you save me?” God replied, “Well, I sent you a car, a boat, and a helicopter!”
Lucky for me I have friends and family that support me and force me to do things like this. They care for me and they are with me for this fight. They are why you are reading this now. I hope you can help. If not please feel free to pass this along. And more than anything, please pray. This is a disease that many have and there is no cure. Pray that those going through the same ‘flood’ will have a cure soon.