"Brain Injury Is ..." Brain Injury Defined By People Who Are Living With It

Or like me, you’re accused of being
manipulative, lying, instead of just recovering from a brain injury! All by your “family”. Maddening.

haunting your loved ones is a great analogy.the only people you are sure would listen and understand you actually go the other way cause they dont believe or accept that dozens of concussions has changed your thoughts and ambitions

Yes absolutely agree! And me too, my TBI from bicycle accident was 1982 and nobody ever said brain injury to me or got me help afterward. I found about it by God leading me to see a book on the subj in a bookstore I was working in. I was diagnosed by a psychologist a few yrs ago whose brother is a neurologist and she recommended I see a neurologist. She said I have residual effects of TBI. My first appt with a Neuropsychologist will be this year, 2021! Don't give up and God bless you

progressively getting worse is the same for me.after all my research i have realized a brainscan will help my diagnosis however my doctor will not give it.after mentioning a brainscan my doctor asked me if i was smoking "synthetic marijuana"no sir i was completely k o d four times prior to grade 8.maybe thats why i rely on pot daily for 42years.i hate to say this but us head injury peeps are on our own somewhat,this gives me peace somewhat thinking that i need to fix this myself cause i tried extensively and we are absolutely misunderstood

My heart cries and prays for God to give you gentle acceptance (not giving up) and deep sense of appreciation for the person you are now, which could be your true self. What you can do, do. When you've done the best you can, know that you gave it your best and don't allow harsh critics to ridicule, condemn, bully or berate you. Inside of you may be an artist, writer, photographer, musician, singer, friend to the friendless, animal shelter volunteer, nursing home visitor. If we reach one person's soul and lift their burdens just enough for them to take a deep breath, press on, and hope for a brighter day, then we have performed a miracle in their lives. Kind words and small actions can have a profound effect on people, just when they need it most. Sending prayers..

It is alright to grieve the changes. I am the wife of a TBI survivor and I also grieve the loss of the husband I had and accept and love the ‘new’ husband I have. At time I feel guilty that I feel frustrated or wish I had my ‘old’ husband back because I know how bad he could have been and should be only grateful at how well he is doing. I think we are all connected in this journey and life has so much to offer - even grief can be good to transform the new you. Best of luck with the new you. You probably are an improvement from the old you, however it is ok to grieve the old you.

It’s so helpful others are experiencing this or have. I hope things have gotten easier for you. I’m just starting my journey of brain trauma and all kinds of crazy days. Give us strength!

Sounds like me

I know exactly how you feel, and I feel the VERY same way most of the time. I am sorry, I wish I could find a fix, either for us or for society. 

God bless you and here is to the hope that we can find enough each day to keep us on the positive side of things. (When I know most days are rough)

Something that helps me is prayers (from myself) and others so if you are a prayer I would greatly appreciate any prayers, and I will be praying for you and others with our same concerns. Another thing is an app on my phone called Lessons in Life Quotes. It has hundreds of inspiring quotes.

Here is a VERY brief background on my situation: I was an LPN for eight years and was able to go back and get my RN degree (Lifelong dream) It was HARD, I had four kids and drove 2 ½ hours one way 4-5 days a week for a year and a half. I received my Registered Nursing degree in 2010. (Next to my wedding, the birth of my kids and grandbabies -- It was the MOST amazing day of my life)

Then in 2014 (in 5 days it will be FIVE years) I had two strokes, and then a ruptured brain aneurysm which required a month in ICU on a ventilator. I had many setbacks: bacterial meningitis, vasospasms, hydrocephalus, double pneumonia. It also affected my hypothalamus which causes temperature irregulation. It could be 50 degrees Fahrenheit and I'll be sweating in a tank top and shorts. It is just another ANNOYING one of the million effects of this.

I know I have a lifetime ventriculoperitoneal shunt (VP Shunt). I have lost so much and now have been diagnosed with a rare condition called Moyamoya. My left carotid artery is 100% blocked so I have been told to watch for right-sided stroke. I was only 40 when this happened, and now 45. Most people don't survive. I do understand that.

Like you, some days I think "what is the benefit?"
That's enough negativity out of me today. Have a wonderful day and God bless.