Brain on Fire....This movie is based on a true story... (Originally published this on 9/5/2018)
I watched this movie tonight and for me it was a very emotional thing. Chloe Grace Moretz did an outstanding acting job in this movie. In some scenes she knew exactly what it felt like to have odd things happening and not even a team of doctors could diagnose her. If you have ever had chronic pain that you couldn't explain and doctors couldn't explain.... Or headaches... Or odd symptoms that just didn't fit... If doctors told you that you were just imagining it or it's all in your head... Here take these pills... Oh those pills didn't work? Okay take these...
This movie is dead on those feelings for me. You eventually start to give up hope. You start to think that maybe it is all in your head. Then you slowly stop caring if you wake up in the morning. You consider stop taking all the medications and just quit. Part of your independence is lost if you have to take meds that hinder your ability to drive or make decisions. It's heartbreaking for the patient and for their families.
I am lucky because I have a wonderful loving husband who does his best to try to understand me and all my many issues and help me any way that he can. My family is there for me and even a couple of friends who are going thru something similar.
I hope that one day DNA testing will be more affordable so that it will be easier to discover hidden illnesses. There should be a safer and faster way of discovering health issues without so much guessing and theory.
For me my journey started when I was 13. I was told by a specialist that it was just growing pains. "Take some Tylenol or Advil.. It will pass." It never did. I was able to endure until 17 when I had to drop out of a pagent because I couldn't handle the dance routine. I broke out with shingles that year. At 24 I broke out with shingles again and then again at 28. My last breakout was at 40.
My all over body pain had increased exponentially after having 2 children at 31 and I had started taking alleve like candy due to all over body pain. Went to the stomach doctor due to bad acid reflux and was told that if I continued taking NSAIDs that I would have stomach ulcers. When I stopped taking Alleve my world crashed. I couldn't find the strength to get out of bed. The quantity of Alleve I had been taking masked the true level of my pain. I went to a RN complaining of major hip pain. She ordered an MRI. She referred me to an orthopedist and he told me that I had a significant tear that was causing the pain. I had not fallen... Or had a wreck... Or anything. I had 2 natural childbirths though. I once had an XRay tech tell me that I had the hips of an 80 yr old woman. Wanted to know if I had been in a car accident. I later discovered (from another doctor) that I have Osteoarthritis in both hips. I have had 3 hip surgeries.
My orthopedist kept telling me at each appointment that he thought that I had an autoimmune disease and that I needed to got to a rheumatologist. So he referred me.
It only took the doctor 10 minutes to diagnose me with Ehlers-Danlos syndrome. I had spent most of my life trying to figure out what was wrong with me and this man spends 10 minutes with me and asks me to bend certain ways and he looked at my hands and the stretchiness of my skin and diagnosed me on the spot. He had no doubt that's what I have.
When you look at me you cannot tell anything is wrong. I can still walk. I just cannot walk far. I tire very easily and my heart rate dramatically increases and I can faint if I stand too long. I was originally diagnosed with POTS but now my doctor thinks I could have been misdiagnosed. He now thinks it is IST. The difference is POTS is typically associated with a high heart rate that greatly increases upon standing. My heart rate is 105 at rest.... And Increases as I stand. I have had a higher heart rate for about 2 years now. Doctors were never concerned with it before until my rheumatologist saw a pattern. EDS patients are usually diagnosed with some type of Tachycardiaia.
I have received a lot of stares from people when I use a cane or a wheelchair. It's not fair. But it has changed how I look at others. You do not know anyone's story. You do not know what they are feeling or what their going thru. Just because someone doesn't look sick or disabled doesn't mean that they aren't. I use my wheelchair on the days that I have zero energy or when my pain level doesn't allow me to walk. Or when my Tachycardia is so bad that I am afraid that I might fall if I try to work. And it has taken me a year but I am finally okay with allowing myself to admit that there are things that I just can't do. And that's okay. I'm still alive. I am still fighting. And that's what matters.
