View Single Post
Old 04-06-2018, 12:20 AM
Living_Dazed's Avatar
Living_Dazed Living_Dazed is offline
Member
 
Join Date: Jan 2013
Location: Great Lakes area
Posts: 409
10 yr Member
Living_Dazed Living_Dazed is offline
Member
Living_Dazed's Avatar
 
Join Date: Jan 2013
Location: Great Lakes area
Posts: 409
10 yr Member
Default 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
__________________

.


*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
Living_Dazed is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
davOD (04-06-2018)