When I was 11 years old, living with my family in Florida, I was sitting in the car and suddenly my vision was fading. Then half my tongue got numb. Next thing I knew, I was in the hospital with this massive pain inside my head. I had passed out after having a seizure. I have had them ever since.
Through my mom, who worked as a respiratory therapist supervisor until she retired a few years ago, I had access to decent care. They did a lot of testing—but didn’t have the tools to get me the right diagnosis at that point. They diagnosed me with migraines. From age 11 on I always went to the local hospital after seizures and they treated me for the pain. They knew me well there.
Caring Voice Coalition is helping me get access to treatment. Without treatment, I have seizures multiple times a week, sometimes every day, sometimes two in one day.
I knew it wasn’t just migraines. I’ve never met anybody who could be in a room with a TV on when they have migraines. I did have the pain and vomiting people with migraines have. One doctor diagnosed me with mini-strokes in my 30s. That also turned out to be wrong.
In the last few years, hospitals quit treating me for pain because of the addictiveness of pain medications. For a while they didn’t know how to treat me.
It wasn’t until a few years ago that I found a doctor who could explain what was happening. He said I have complex partial seizures (CPS). He told me the more seizures you have, the worse they’re going to get. He also prescribed me a treatment that worked. For eight months on the medication, I only had two very minor episodes.
I moved to Florida in April to be closer to my mom and help her out. In Florida I don’t have the coverage I need for the medication that works. Caring Voice Coalition (CVC) is helping me get access to treatment.
Without treatment, I have seizures multiple times a week, sometimes every day, sometimes two in one day. I’ve tried a bunch of different things to manage the seizures on my own and haven’t found anything that works. But the medication I had in Michigan, if I can get access to it, will work.
I hope I can get to the point where I can say I haven’t had a seizure in a year—and then be able to get a job. I can’t stand sitting around. I don’t say that to complain—I’m just making an observation. I am the type of person that needs to get on a ladder, put a drill in my hands, run some wire and make people happy.
Lots of people take life for granted. I don’t do that. Every day I wake up feeling blessed. I never wake up in a bad mood. But sometimes I wake and have a seizure, and that can ruin my whole day. It makes me groggy and miserable and irritable. But it also makes me thank God I’m alive.
I can’t thank CVC enough, and I don’t even have treatment yet, but just the fact that they’re going through what they’re going through for me—I’ve never had that happen before. All I can say is “thank you” in big letters. Life is too good.
What our patients have to say
I have severe pulmonary hypertension (PH) due to mixed connective tissue disease. In 2013, my son had just finished his undergraduate degree and my daughter...
I am 55 years old and for 22 years I have had orthostatic hypotension (OH) in addition to numerous other rare conditions. I have been...
When I was 11 years old, living with my family in Florida, I was sitting in the car and suddenly my vision was fading. Then...
I worked three or four blocks away from the World Trade Center during and after the 9/11 attacks. Several years later, I was having a...