5 + years & every day is different
 

Hello Friends,
My name is Jenna, and I have also gone by Jace on here before I formally introduced myself. It's been 5+ years.

My crash on 11/21/12 was caused by a drugged driver. It was a multiple impact crash and I had what is called a coup contra coup (sp?). Referred to similar to shaken baby syndrome. If I hit my head it was on the headrest and window but I can't recall. My driver's airbag went off and I was wearing my seatbelt. I did not lose consciousness.

Four days after the crash, my brain started to shut down, slowing greatly. My speech became labored and slurred, my processing was very slow, and I had many textbook symptoms that many of you have experienced.

I was very frightened. I was no longer in my head and could not understand what was happening to me. That alone was enough to cause thoughts of suicide. If you haven't found a counselor, I've seen an neuropsychologist since early 2013, I highly suggest you find someone that understands the brain. My doctor was a godsend. She worked with brain injury patients for many years and she's been the number one doctor that has helped me the most the last 5+ years.

My worst lasting symptoms I still have: neuro fatigue (cognitive fatigue-there is no cure), slower and not efficient processing, short term memory issues, brain fog, difficulty with numbers, can't read books, vestibular nerve damage, balance and vertigo, visual processing issues, migraines, headaches, eye and ear pain, tinnitus, sound sensitivity, movement sensitivity, nausea, PTSD, anxiety

The TBI brought out a genetic blood clotting syndrome 2+ years after the crash and I had a stroke in the veins of my brain and a bleed on my brain. The stroke caused full body pain, and body fatigue.

Having neuro fatigue and body fatigue and body pain reduces my quality of life.

If I could be cured of these three issues my life would drastically improve. There is no cure for the very common symptom of neuro fatigue or also called cognitive fatigue.

I am a type A personality and used to have energy to last all day and into the evening. Being on top of my work as an elementary teacher, wife, mom, daughter, sister, friend and running a household fueled me.

My life went from 100 to 0 in seconds. Each day is different for me. I never know what level my energy will be, body or mind, and what my pain will be like.

For my tinnitus, we have a fan upstairs and downstairs running all the time for the white noise. It helps.

As many of us should learn, pacing is important. My will is strong and has not learned this lesson. Yes, I know it's been 5+ years but I am stubborn. I want to be an active participant of life.

I am unable to drive because of my vestibular nerve damage, visual processing, and cognitive processing.

Short term memory has not improved and has declined a bit. I have 8 or so meds I take daily in AM or PM. I have a note taped up that tells me which to take when even though I have taken them for years. I refuse to fill my house with post it notes as of yet. Yep, stubborn. If I put something in the oven or on the stove top and walk away, I forget that I was trying to cook. I still pick up hot pans without thinking and talk to myself as I do things in the kitchen. We cook together as a family.

I still get distracted easily and lose my focus and thought. More than one person talking is too much to follow and it drains my cognitive energy quickly. Numbers are not my strength as they used to be. At times, I can tolerate an audio book, but I get lost with trying to keep the details. Same with TV. Mostly I am with my family as they watch a movie but it's hard to follow and drains my cognitive fatigue.

Getting a hobby was one of the best pieces of advice I ever received. I used pictures to learn how to make jewelry, how to paint, draw, carve rocks, burn wood signs, sew, crochet, and other things. I think doing these things may account for the amount of healing I achieved my first two years. Also, being busy and having something for myself helped with the emotional destruction inside me of not being able to teach.

Not having my career continues to be a huge emotional issue for me. At 47, I can't imagine not having a career for the rest of my life. I believe greatly in always moving forward and having hope. Lately, I wonder if I have hindered myself from accepting my loss of career by holding out hope. It's a topic to discuss with my neuropsychologist. If the potential to go back to school to finish my masters and restart a career has a low probability then I should face it and find a way to accept and move on. I dream about my work 4-5 nights a week; it's been a heavy grief for me. I loved teaching except for bulletin boards and politics.

My vertigo and balance issues are manageable. I am careful but continue to practice balance. I know some triggers for my vertigo and can be prepared as much as possible. Not panicking is vital when vertigo hits.

Exercise is extremely important. I know it's a challenge for many of us. 10 minutes at time of marching in place even if you have to hold on to a chair will help keep you healthy. Try to get in 10 minutes 3x a day. Move your arms if you can. I squeeze in 10 minutes at a time when my balance, fatigue and pain agrees with me. If I go longer than 10 minutes my head starts to hurt.

The symptoms we live with caused by our TBIs are real. The emotional mess that comes along with all of them and the effects of them on our lives is just as important. I used to take cymbalta for depression but it damaged my liver greatly and I have been off it for 6 months. My anxiety is much worse, but as of yet, the depression is not back. Because of my liver it's my goal to stay as emotionally as healthy as possible.

I'd say that I am 60-70% back in my brain. +/- on somedays. I am very thankful I am not down around 20% +/- anymore.

My brain is done for now. I wish you all well and advise everyone to educate yourselves about TBIs and PCS as much as your brain can tolerate. Keep a notebook with you for all personal business and medical visits. Doctors are not Gods and some know very little about mild to moderate brain injuries and their lasting effects. Find your voice and speak up. Don't allow medical or anyone to take advantage of you. Keep looking for the right doctor to add to your team. I am still building my team and it takes time. Allow yourself bad days. Emotions are temporary. Feed your soul. Live all your good moments completely. Eat what you want in moderation but mostly focus on clean eating. Drink lots and lots of water and move your body as much as you can tolerate.

I understand,

Jenna

I'm right there with you.

My car accident was last September - a drug dealer was being chased by the police no less BUT I did my civic duty and they at least caught the guy! Though he was probably home out on bail before I was home from the hospital ;)

I too lost my 35+ year teaching career. I miss the little ones terribly! I had just finished my PHD a couple of years ago, so sadly I had not put it to complete use.

My symptoms are pretty much in line with yours as well. It don't dirve and also walk off and leave the stove on.

I just had a neuropsych evaluation a week ago so it'll be interesting to see what it says.

How did you get diagnosed with vestibular nerve damage?

Sorry to hear you are in a similar place. I genuinely hope you continue to heal and can enjoy teaching again.

I think I’m ready to let go. I went back to my school last week and although there’s still great friends of mine working there...I am nobody. Yes, I’m Mom, wife, daughter, sister, all those rolls. But what I’d made for me, that’s gone.

I love to go there and then hate myself afterwards because I’m no longer that person. In my field, I am nobody.

I’m done working on getting back there. I need to be at peace with myself. At 5 years nearly 4 months and I am no closer to acceptance. If, someday I should wake up and be healed, then fantastic. I just can’t live on the edge of my seat anymore waiting for my miracle.

How I’ll achieve acceptance, peace and a new found love for myself I’m not sure. But, I’ve turned a corner during this last month. I don’t want to just wear a smile, I want feel the joy that goes with the smile.

QUOTE=BlueSkye1962;1261358]I'm right there with you.

My car accident was last September - a drug dealer was being chased by the police no less BUT I did my civic duty and they at least caught the guy! Though he was probably home out on bail before I was home from the hospital ;)

I too lost my 35+ year teaching career. I miss the little ones terribly! I had just finished my PHD a couple of years ago, so sadly I had not put it to complete use.

My symptoms are pretty much in line with yours as well. It don't dirve and also walk off and leave the stove on.

I just had a neuropsych evaluation a week ago so it'll be interesting to see what it says.[/QUOTE]

I saw Dr. Timothy Hain in Chicago on Michigan Ave. He is also referred to as ‘The Dizzy Doc’

I have experienced a lot of the symptoms you listed. My brain injury was the result of someone rear-ending me as I sat waiting for the traffic light to change.

I felt normal for about ten days post-injury, and then all of a sudden I got an electric current run up my neck into the center of my brain, and a vibration ensued that lasted a couple seconds. Afterwards, I still felt normal. Three days later I was at work and all of a sudden the current shot up from the top of my neck into the center of my brain. Again, vibrations, but this time it lasted around seven seconds and I nearly passed out.

Ever since, my life has been changed. I went through intense dizziness, light headedness, photophobia, eyes feeling off balanced, etc. for two years. I also had my pituitary gland damaged in the accident and developed hypopituitarism for growth hormone. This was not discovered until two years post accident, and it explains a lot of why I healed so little the first two years. I didn't have enough growth hormone being secreted by the pituitary gland to allow for proficient healing.

Now, four years post-accident, I do have some normal days, but they seem to come and go. I even went a full month recently feeling normal, but I've since went back to feeling loopy. However, I'm now getting a lot more normal days than I used to. The first two years post-accident, I had maybe five or so normal days.

Throughout this I have worked, teaching students. However, I was recently asked to resign because of a comment I made, the result of my brain injury. People who have never had a brain injury do not understand. You look fine on the outside, so they assume that you don't need accommodations, or that your arguments regarding your disability are not valid.