“This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD

Talking about past trauma isn’t easy – so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you may not see visible symptoms, a person can still be suffering on the inside.

Will you tell us about your story and what happened?

On January 11, 2012, when my husband Tim, my daughter Amanda and I left home around 5:45 PM to pick up my friend’s children for church, we had no idea how much our lives would forever be changed. Statistics show most accidents are within 2 miles of your home, but I wonder what statistics are for accidents caused by your neighbor’s teenage daughter.

I was driving and waiting to turn into the development where my friend lives, and as I looked in my rearview mirror, I noticed headlights coming closer and getting brighter. I started yelling to my husband that the car behind us isn’t slowing down. I tried to hit the gas, BANG…I remember seeing the Ford emblem on my steering wheel, then next thing I knew…I was screaming for my daughter and husband. Then my husband jumped out of the car screaming at the other driver. All the while I’m stuck in the car and nobody realized how bad my injuries really were. My husband comes back to our car saying Jessie, it’s our neighbors daughter. My heart sank.

The EMTs called for the “Jaws of Life,” but I apparently wouldn’t have that with our daughter there, so they somehow relieved pressure and got me out.

I was taken to the nearest hospital, where I was diagnosed with a concussion, neck and back injuries and sent home that same evening. Yes, same evening. The doctor instructed me to follow up with my primary within two weeks if I felt no improvements. So here’s where it’s gets interesting: went to primary within in couple days because I wasn’t improving, and I was referred to neurologist and physical therapy.

I met with neurologist, and this would be the first time I would hear the term that would haunt me forever: Post-Concussion Syndrome. I was officially diagnosed, and I feel it’s been a downward spiral since. I started PT shortly after, all the while I had perforated my colon during the collision and was never checked. It leaked for 4 weeks until it finally ruptured and I went into septic shock at home. The surgeon said if my husband wasn’t home my daughter may have come home from school to find me lifeless in the bathtub. So the PT and head injury took a backseat to the rupture. That took many months of recovery, and my husband even put a temporary bedroom in our dining room because I wasn’t able to go upstairs to bed. That was the worse pain I ever experienced in my life.

I know I’m getting a bit winded here but there’s just so much to my story, all because of a 17 year old driving while on a device…

Once I recovered from the rupture, the neurologist and therapists discovered how severe my other injuries truly were/and still are today. I’ve been diagnosed with Post-Concussion Syndrome, PTSD, vision issues, dizziness, short-term memory issues (which my last evaluation showed was severely impaired), and tremors, which we are hoping isn’t Parkinson’s. These are just a short list because I can’t remember all of them at the moment.

How has that changed you and your family’s lives?

This has changed everything! I was supposed to be going to school to be a dentist at this point. It’s sad how somebody else can control your destiny for you and completely mess you up forever. I have God awful mood swings! I’m not the person I used to be, someone who my husband could count on that he could tell me a list of things to get done in a day’s time and I’d remember to do them. He doesn’t like me to cook when I’m home alone because I forget things are cooking and walk away from them on the stove. I’m only 41 years young and trapped in the mind of a 90 year-old sometimes. This injury has put a lot of pressure on my husband to not only provide for us but to worry about me and my health. He knows my health is never going to get better, and there’s always the fear of the long-term issues with head injuries. The unknown. All because of a 17-year kid, I’m sorry to keep saying it, but sometimes I can’t believe it myself.

What are some ways you cope with your conditions?

I cope with my conditions by leaning on my husband, he makes me laugh a lot! I cry a lot. I would like to speak out more about not driving while on a device but I’m working on it. I’ve done therapy but I didn’t feel as though the therapist “got it,” if you know what I mean. I’m learning every day to cope with my condition and so are my family members. It’s harder for them since this is a harder injury to see.

What is a good day for you, what’s a bad day?

I wake up every day hoping is this the day I will be “normal” again? A good day is when I can fully function without snapping or flipping out on my loved ones, when I can actually complete a full grocery shopping trip in one trip, when I have the energy to do laundry and make beds, and when my vision issues don’t act up to the point where I can’t see.

My bad day, I feel I could dig my own grave and lay in it forever, when the ringing in my ears is so terrible (like this very minute) I have to drown it out with white noise just to sleep, when I have to take medication to sleep every night so I get brain rest otherwise, I only get 2 hours of sleep, the worst day is when I’m falling a lot and so dizzy it’s like the drunk spins but without the party.

What do you want others to understand about living with PTSD and TBI?

The one thing I would like people to understand about PTSD is it’s not something to brag about having, it’s not glamorous, this is a very serious issue. I have panic attacks, nightmares and terrible anxiety sometimes so bad I won’t leave my house because I want to avoid getting back into the car again.

I want people to understand about TBI. Think of it this way: go home, turn on every television in your home full-blast, radio same thing, have your kids play around you really loud, and have flashing lights – now get on the phone and try to pay attention. You can’t. That’s what’s it’s like to have a TBI for me. I can’t filter things out, it’s really hard to. Sometimes I just need a quiet break.

To sum it up for both, please don’t judge a book by its cover, it may be masking a bigger issue. I hide my symptoms a lot more often than I should. Just because you can’t see the injuries doesn’t mean I’m not screaming on the inside.

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2 thoughts on ““This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD”

  1. My mother nearly died in a car accident almost two years ago now, she was forced off the road by an eighteen wheeler. Before anyone makes any comments about the dangers of truck drivers, my father is an over the road truck driver, and my mother graduated at the top of her DOT certified school and they team drove before health issues forced her to discontinue driving a truck.

    Her neck was broken, arm nearly broke, ribs broken, and near fatal head trauma. They knew her injuries were literally life threatening, and yet three days later she’s home with me, disabled with Chronic PTSD myself. I didn’t handle it well, and I caught some well deserved flack for my behavior but I told everyone, “Regardless of what transpires, she’s not going to come to any harm under my watch.” If anyone had been around to watch us, I don’t even want to go there. But I meant what I said, and I don’t break promises. I made sure she ate, was hydrated, took her medications she couldn’t remember to take, slept on the floor next to the chair she was comfortable in, right next to it. No dog has ever been more faithful to it’s master. Honestly, neither of us remembers a lot of details of those first weeks. I videotaped a bit of it at one point. I won’t watch it ever again. I can’t stand to see the condition either of us was in.

    She’s still fighting to get into to see a neurologist. She’s got about the same laundry list of problems you do, and it’s difficult for her to deal with. If you knew her past history, you might be able to possibly grasp my saying she’s a damn strong woman, and in my 40+ years of life I’ve seen her fight through some hellish things, but this one, this one has drug her down like nothing in her life before ever has.

    I guess my point is you are not alone in your suffering, whatever consolation that might give. I sincerely hope that tomorrow brings you and your family a better day than today, and the next is even brighter.

  2. Hi Jess,
    After reading your story your symptoms are very very similar to my husband. He was hit on the head while working on a machine.He was taken to hospital stitched up and sent home and returned again complaining of headaches tremors tinnitus flashing lights it took 9 weeks before we got to see a neurologist and believe me he didn’t sleep for those 9 weeks. It’s comming up to 3 years since his accident and he is on lots of medication but he hasn’t had one pain free day in those 2years and 7 months.last week he was referred to a pain management specialist and they are going to start trial injections which are hugely expensive the first will cost about €1500 and there is no guarantee that it will work. We gave no health insurance and he hasn’t been able to work since his accident. He also has memory and impairment and dosnt like to be in crowded situations
    One question Jess do you suffer from internal tremors as well as the noticeable ones??

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