- Posted February 7, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
The Invisible Handicap - Chiari Malformation
My name is Brandi Lipford. I am 39 years old. I have 2 wonderful children and a beautiful grandson. In December of 2003, I was diagnosed with a rare birth defect called Chiari Malformation. That's when my world came crashing down. At the time, I was this young entrepreneur running my own in home day care center. Business was going great. But this would be the start of my health decline. I loved what I was doing but in reality how strong could I be? I had to face the music.
Now, many ask what exactly is Chiari Malformation? Well, I would joke when I explained to people what this disease was and say that my brain is too big for my own good,lol! But in actuality, it is.
Chiari malformation, also known as an Arnold-Chiari malformation, is a congenital (present at birth) defect occurring in the back of the head where the brain and spinal cord connect. It can lie dormant for many years until physical symptoms begin to appear. Arnold Chiari Malformation or ACM, is a rare and sometimes deadly neurological disorder that effects less than 200,000 people in the United States. It is a serious condition which debilitates the body in such a way that it can eventually lead to paralyzing pain an neurological discomfort.
There are four types of Chiari malformations:
Type 1 – Occurring when the base of the skull and upper spinal area do not form properly, a type 1 Chiari malformation commonly goes unnoticed until problems arise in the adolescent or adult years of life. Therefore, many people do not know they have this disease until it is in its latter stages. I have type 1.
Me, I wasn't diagnosed until I was 29 years old. It took for me to change my pcp. After our initial visit, I spoke to her at length about how my headaches were escalating and that the medicine was not relieving any pain. So she ordered an MRI. Guess what, when that MRI came back it showed that I had complete obstruction. Meaning my skull was so full of fluid that you could not see the brain at all. That's why I wasn't getting any pain relief. My head was so full, it felt like it was about to explode!
Can I say that was a task? For many years I had complained about headaches and then being diagnosed with migraines. Taking tons of medications that never worked and never really being able to resume my quality of life. I couldn't enjoy a sunny summer day without feeling nausea or being light sensitive. I felt like a vampire at times because I would wait until the sun went down most days to do grocery shopping and other basic things. My poor kids, they always knew mommy wasn't feeling well but never knew to what extent.
The grueling surgeries and day-to-day struggles often leave ACM patients and their families devastated, both physically and financially. I knew how it affected me. I was one of the million of Americans that did not have health insurance. I was considered "pre-existing" at the time. I could no longer work and I didn't qualify for any assistance.
I had my car repossessed. Social Security denied my 2nd application. The state had denied me health insurance.I was working on fighting an eviction. Those suckers at my power company were sending me 10 Day Shut Off Notices like they were going outta style. I had gone to my church for assistance. They denied me because it had been a month since I last attended service??? So of course, my faith was being tested. I wondered quite a few times where my next meal was coming from. Depression & anxiety had settled in big time. Not to mention my health had taken it's toll on my son and his education. He was failing.
Chiari affected my hearing, my vision, the way I walked. I would suffer seizures & blackouts. My speech was slurred at times. I would be in mid thought and forget what I wanted to say. I choked on my own spit or would choke on my meals. It shortly affected my mood. I couldn't enjoy the simple things like family picnics or fireworks on the 4th of July. I became sound sensitive. So going to concerts were out of the question.
So back to the title of my story. I call this the "invisible handicap". Because on the outside, I look like your typical mid to late 30's woman. But people have no idea how or what I feel like on a daily basis. I have had 5 brain surgeries since being diagnosed in 2003. My first was in 2004. My second was in 2005. My third and fourth were in 2011 and my last was in 2012.
But you don't look sick" is a typical statement that I always hear. You don't see the pressure in my head, or see that it feels like my head is about to explode, or when trying to enjoy the social aspects of just hanging out with friends that I pay for it the next day by being bed bound. Of course, I look normal...NOT!
You've had surgery, so you're good now right? Ahh, no...my surgeries are merely a form of treatment and definitely not a cure. I wish.
So my reflections of this past decade?
* The simplest things in life such as a smile, a kiss from a loved one and hugs are priceless treasures. Enjoy the simple things.
* Troubles are only temporary. So is life. You better live it like you mean it.
* Life wasn't meant to be easy. At the end of the day, be happy that you're alive and loved by many.
Finally, after fighting through the bureaucracy at the social security level, I won my case. I have since been able to get back on my feet. Slowly but surely transitioning back into normalcy. My health is sustained. I have a VP Shunt that helps with my quality of life. I maintain regular visits with my medical team. I exercise when my body permits. I now am able to enjoy family and friends again. Life is good!
Why am I sharing this message with you? Because, I am a warrior. I still believed that there was something far greater for me. GOD had my back. Some of you probably would never expose yourselves like this. One never knows if someone else has a similar testimony. Maybe someone can learn from my experience. Maybe not. Life has not been easy for me. But I still remain positive.
So I may have Chiari Malformation but it definitely does NOT have me!