I am a brain injury Survivor, Family/Caregiver or professional
What do you find most difficult living with a brain injury
Like many, I have just found out after almost 5 years. Reading people who are saying what I have be saying for years and am at a point where I am shocked and cannot believe all the doctors I have seen could not figure it out... oh yeah and then it turns out a doctor did 2 or 3 years ago, but somehow all the other doctors were scratching their heads...Are you kidding me? I have lost so much, have fought so long, that I do not feel I have the energy left...nobody gets it...not even the doctors who know I have it!!! It is hurry up and wait, while my life is going down faster and faster. Someone said it can take them all mornning to write an email...I SO GET IT... The computer, talking, daily life: opening mail, loading dishwasher, laundry are like REALLY??? Then add all the extra paper work from doctors, tests, more doctors, insurance, lawsuit, SSDI ARE U KIDDING???????????????? Thanks ALL!!!!!!!!!!!!!!!!
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Hello Danish D...I just went back into my page and saw this you wrote...I moved to Downtown Portland and everything has changed for me so I have not been on here lately...anyway.TBI is a complex injury to get over I mean, we are dealing with the most Intense and unique organ in the universe! We are challenged everyday with things that often times seem out of place, unusual, different than what we are used to understanding....things happen to us everyday...and we must make quick decisions to stick it out and deal with the symptoms of TBI...We have to..in order to live some sort or normal life...It is one hell of a journey! And often no-one really know what the hell we're talking about when we make comments about our TBI experiences....It so damn complex...that I can understand why! Most people cannot understand what we are talking about!!! Think about it...It's an insane reality that we must put into some sort of understandable problem that we now live with.. I must say that everyday...although I may seem the same...believe me...my brain makes gradual changes, that even the slightest changes would drive most "normal" non-TBI people immediately nuts! We got to live with who we are now...That is a fact! I hope your doing okay...Okay? Let us all be tough as a group in this TBI life-experience we are Experiencing together!!! Let's "Stand Tough!" And yeah...I do pray for all of us as a group!!! God Bless You, and All TBI Survivors!!!
Danish...I do understand the issue with your Doctor...Some Doctors are NOT emotion driven....in that they look at patients as someone looking at a roll of toilet paper.....with no emotion.....but impatience.....In their minds they imagine they are the Freud's of our time.......They don't look at people like humans...with emotions....they look at everyone as a part of their medical amazement.....These kind of Doctors are not "people emotion driven"....They just don't give a hoot.....
I would suggest to you...if possible....to get another doctor....I've had to do that myself in the past......I mean, man, if a Doctor does not perform to what I believe should be a "Patience Priority" meaning "every Patient - Is the Number One Priority" and every patient is a "Human Being"...Not just some number......if you feel that your Doctor does fill your needs, then I believe you should find out what you do to replace him....Do you have a Social Worker for Disability.....But then again...it's funny you should bring this up...my Social Worker - who is a Social Worker who is designated for Disabled/Handicapped people....has not even attempted to make any contact with me.......I mean I have "severe TBI"....I even got a notice of who she is along time ago....and she has not even called me in 3 months! So I'm gonna do some "Major" calling for her next week....I didn't this week due to my recent separation with my Fiance who moved out 8 days ago......It has been an emotional 8 days.....But, there's no way I can give up the fight Danish......"Survival" is essential for us.....We have come this far with TBI....I mean did you know that in this country, on average...50% of people taken to the Emergency ward of hospitals in the U.S. for TBI. on average 50% die? So, we've come a long way! I actually have a Doctor now that I'm considering looking for someone else......I mean, Do what "YOU think" is the right thing to do when it comes to you and our TBI. I don't know...but don't get depressed about it....Cause man, sometimes it seems like there's always "something" that can get on your nerves....Just try to find someone that you feel comfortable with....if you can.....I know is more complex than that...but you've got to "look out for YOU" If your on medicaid or something.....You have to look at the laws governing "your choices" of Doctors you choose......If you can make those choices...I mean, don't get mad or something......I mean I don't know your situation...but you do have right in considering which doctors see you, especially for TBI....It's your right......Talk with your Social Worker...See what he/she thinks.....But You just be Positive as much as you can about you and your TBI. Here's something I know.....Isn't it funny that if there we 10 non-TBI people listening to our discussion......then You and I would be "the only two people who even know what we're talking about"....I mean, we're a "Special Breed" of the new patients "of today"....I mean if I talk about balance/dizziness and TBI......"You" already know what I am talking about...right? Non-TBI people don't have any idea what the heck we're talking about! That's part of the problem also with TBI.....TBI is so complex to normal people...."We" have "hands-on" training in TBI...right? Weird, but true....You hang in there..Okay? It's always gonna be somewhat weird....living with TBI simply because it is a "complex" issue that people just don't get it man.....I can tell your a "survivor"...and you know survival is "tougher" for us.....So we got to be "tough"....cause, I mean, we were kept here on this earth....God thinks we're someone special....So you take care Danish...Pray for-ask Jesus for Strength and Patience to understand ...when you feel low or sad.......go for a walk....look around your neighborhood or Park.....see what "drives" some handicapped to continue to live...regardless of their disability.....There's many "survivors" who are disabled....who keep going "forward" and living....regardless.....okay? God Love us.....He did'nt forget us.....that's why we're still here.......God Bless....Phil E.
Anyone else from Portland, Oregon???? Exciting weather we're having. right? It rains here this time of year all the time.....I mean.....it does not "pour" but it's cloudy almost non-stop....until next Summer......But boy they have alot of Coffee Houses here also!
I know exactly what you mean Danish D. When I go to a store, sometimes I do get some stares...But I kind of let that go....because people are curious and do stare..you know? But still...sometimes if I'm feeling tired or "crappy" the stares bug me.....but I deal with it.....Now I just look at them and smile (if I can "remember" to smile).......and sometimes they smile back!!!So I think the staring is basically curious stares.....Cause I imagine I do give some strange looks sometimes.....so now I just ride my bike and smile and laugh when I want to....I mean, you know the song...."Let's give them something to talk about....talk about, talk about....I mean talk about.....heck, on yea! "Talk about TBI"....Oops, almost forgot!!! Man, what a life! Right? Anyway, Please take care of yourself.....we've made it through the tough part....I mean...the rest is up to a lot of time.....the brain heals very slowly, it's up to our handling our "crazy Symptoms"......I mean, a broken leg, "I could live with!" But a "damaged brain?" That's Crazy man!!!Bye...Take care! Phil
HI DANISH....JUST WANTED TO SAY GLAD YOU FOUND AND JOINED OUR GROUP. YOU HAVE HAD TBI FOR QUITE A LONG TIME....GLAD YOUR WITH US....DANISH....GLAD TO SEE YOU'VE MADE IT THIS FAR.....MYSELF, I DO HAVE GOOD AND THEN, BAD DAYS....I'M SURE YOU UNDERSTAND.....SOME DAYS I FEELS OK....YOU KNOW, THEN I MAY FEEL "TOTALLY SPACED OUT THE NEXT....IT'S A NEVER-ENDING EXPERIENCE. JUST WANTED TO LET YOU KNOW.....SOMETIMES I DO GIVE ADVICE, AND IT IS BASED TO TRY TO HELP SOMEONE LOOK PASSED THEIR PROBLEMS......I DO....HAVE MY OWN ISSUES DEALING WITH TBI ALSO......"NEVER A DULL MOMENT"........OH, YEA, I JUST CAN'T REMEMBER THE MOMENT!" HA! ANYWAY HOPE YOUR DOING WELL TODAY.......GOD BLESS YOU AND WELCOME, AGAIN!!!! : )
SO DANISH, JUST "HANG IT TOUGH" OKAY? DON'T LET IT KNOCK YOU DOWN....TAKE A WALK OUTSIDE....LOOK AT OTHER'S AROUND YOU....SO MANY PEOPLE HAVE GOT IT REALLY BAD......I MEAN, I SAW A YOUNG GIRL, MAYBE 25 YEARS OLD AT A STORE ONE DAY....SHE HAD NO LEGS...I MEAN THE LEG STUMPS WERE EVEN SHOWING OUTSIDE HER SHORTS......SHE HAD SOMETHING MORE VALUABLE THAN HER HANDICAPPED CONDITION...SHE HAD A "SMILE" ON HER FACE....AND WAS TALKING TO OTHER PEOPLE....JUST TRYING TO BE A PART OF SOCIETY....AS THOUGH SHE WAS OK! THAT "TOTALLY IMPRESSED ME"....I MEAN IT MADE ME LOOK AT MY OWN TBI PROBLEMS AND THE FACT THAT "WE HAVE GOT TO BE TOUGHER THAN THE TBI!!!!!!!!!"HOO-RAA!!!!(THAT'S MY 10 YEARS OF ARMY COMING OUT OF ME...SORRY ABOUT THAT! TAKE CARE AND GOD BLESS YOU.....PHIL
CONT'D - LEARNED THAT WHEN WE "D' LET OURSELVES GET MAD AT WHAT WE ARE EXPERIENCING, DUE TO TBI....THAT THE "REACTION" OF GETTING MAD, ONLY RESULTS IN MAKING OURSELVES FEELING EVEN WORST!!! I KNOW IT IS "FREAKIN" FUSTRATING TO DEAL WITH DOCTORS IN THE TBI SPECIALITY....ALOT OF REPEATING INFORMATION COMES OUR WAY....OR, THEY JUST "DON'T KNOW"....BUT, REALLY, THEY ARE DEALING WITH THE MOST "COMPLEX" INTERNAL ORGAN THAT HAS BEEN SAID BY MANY IS THE MOST "COMPLEX THING OF ANYTHING, IN THE "UNIVERSE". I MEAN, THERE'S ACTUALLY 1 BILLION OR SO, BRAIN NEURONS (CELLS) IN OUR BRAIN! I ACCEPT THE FACT THAT MUCH OF WHAT DOCTORS TELL YOU ARE BASED ON THEIR KNOWLEDGE OF TBI, WHAT THEY HAVE LEARNED AS A RESULT OF OTHERS IN WORLD WITH TBI IN THE PAST.....DOCTORS HAVE TO MAKE AN "EDUCATED GUESS" ON OUR TBI, DUE TO THE COMPLEXITIES OF TBI, AND ITS SYMPTOMS.....I CAN UNDERSTAND THAT FACT....IT IS TOUGH...I MEAN, WE'RE A SOCIETY THAT CAN TAKE "ASPIRIN" AND HELP GET RID OF A HEADACHE! IT CAN "DRAIN" US OF HOPE AT TIMES...BUT...WE "CANNOT" LET THIS CONTROL OUR EMOTIONS...NO WAY, AT ANYTIME...CAUSE THAT WILL TAKE US INTO "DEPRESSION" BY DEFEATING US.....THERE'S NO WAY!!!!SO, LET'S BE "TOUGH" THROUGH THIS TBI POOP! OKAY? TAKE CARE.....AND WELL "TOUGH THIS "WEIRDEST" INJURY OF ALL TIME"!!! : )
I KNOW WHAT EXACTLY WHAT YOU ARE SAYING...DANISH D...I KNOW IT CAN "BASICALLY" MAKE YOU "REALLY MAD", ESPECIALLY WHEN WAKING UP SOMETIMES..(LIKE ME TODAY), UNABLE TO CONCENTRATE.....TERRIBLE MEMORY....COMING BACK TO LIFE FROM A LONG 8 OR SO HOURS OF SLEEP IF REALLY UNREAL AT TIMES! IN FACT, I FEEL AS THOUGH I'M IN SOME WEIRD MOVIE WHERE EVERYTHING IS SOMEHOW DIFFERENT...HARD TO COMPREHEND...BUT, TO TELL YOU THE TRUTH, I FOUND OUT A LONG TIME AGO THAT...
August 4, 2018 at 2:30pm to February 3, 2019 at 4pm
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