bjscloset.org
Jan '06
January 2006
I celebrated my 8 year TBI Anniversary on Christmas Eve last month and for some reason I've just never gotten all upset about this whole Anniversary thing like I hear so many BI'ers do. I honestly have trouble understanding how others can keep this injury on the front burner every year no matter how long it has been. Maybe it's because I view that as never "moving on" to the next level and therefore no recovery from the injury that has changed so many lives.
When I look back through the years I have to truly say that I never experienced the "denial" part of TBI. I didn't have time to experience it I assume because I was constantly trying to find out what was wrong with me and if there was a way to correct it or at least turn it around to be more in my favor (that part never happened).
I have however moved on with my life as best I can with the deficits I now have. I have gotten my disability and had to mess with that whole system (Medicare) and I think that part is almost worse than having a disability! OUCH! I just can't imagine trying to understand all this stuff when you're 65 and retiring! What a pain! I would have done better to put $100 a month into the bank for each month that I worked. By this time I would have had over 28 thousand dollars plus interest in that account and could have used that to help me live while I was going through the disability ups and downs. WOW! Can you imagine how much that would have helped while I waited? But what can I say, it just didn't happen that way! Figures!
Now with the changes in Medicare and all the medicine programs out there you almost need a college degree to figure them all out (which can be a bit difficult with a brain injury). And what about the "fine print"? Will we ever understand that part of it either? At this point in time I'm not sure that will ever happen, and if it does, I'll probably forget it when I turn around anyway! (yes, I'm grinning)! But for the time being I've located a hopefully good program for my Part D Medicare and I can go on with the next step of my life.
Let's see.........life since my BI? Oh, if I had a dime for all of the ups and downs I wouldn't have to be on Medicare, but would I have changed anything? OF COURSE! I'm brain DAMAGED, not brain DEAD!
What would I have changed?
1) I would have made it easier to find a doctor, therapist, information and support groups.
2) I would have been easier on myself when I was so frustrated trying to find out why things just weren't working right.
3) There wouldn't have been any of this, "You've just got a bump on your head. You'll be back to work in no time!" and I would have kicked the doctor/doctors that told me this and gone out to find another one, no matter what Workmens Comp said.
4) I would have chosen a different attorney in Texas and not put up with the BS that they tried to feed me when I went through mediation.
5) I wouldn't have believed the first Neurologist (supposedly educated in BI) that told me I had "too many symptoms" and that I just needed a shrink! I would have gotten help to find a good BI doctor who didn't treat me like I was "faking it". I wonder what that doctor would say now if he knew all the facts?
6) I would have done more research into what my rights were as a disabled person and gotten an attorney to stand beside me from the very beginning.
With just these few things I could have changed many of the outcomes and I'm sure I would have saved myself a lot of stress and heartache too.
The biggest majority of BI'ers don't know anymore than a baby about our injury and since we can't learn it all overnight we must have someone that can be an advocate for us so we can get the most out of our recovery. I would have fought to find someone to help me through this transition.
One of the best things I did for myself was keep "fighting" until I won my disability (almost 6 years from my wreck), and never gave up when someone acted like I was faking or that I was a "mental case." Sure I was confused and frustrated! What did they expect from someone who had their entire life (and career) turned upsidedown in a split second leaving them hanging from a tree with no place soft to land?
BI'ers need more people to GUIDE US! Where are those people? Why aren't we warned about this from other doctors who are supposed to be our friends? Why aren't we led to the correct path where we can get counseling, therapy, support groups and much of the testing that we need to prove there is damage and find out if anything can be done to help us cope or heal?
This is just a drop in the bucket of the struggles a BI'er has at the beginning of their battle. I still to this day can't understand why there isn't more information readily available from the very beginning of our struggle at the Hospitals, or Doctors offices, or EMT's that help us. Why is it such a fight to find this information when there are many BI Associations out there in each state?
Just recently a friend of mine had two brain bleeds, and shortly after she had been in the hospital I went to see if there was some information I could give her better half. I literally had to ask some of the nurses if they had such information. They looked at each other and asked each other "where is that brochure?," and it wasn't until they searched around a bit that they found one and gave it to me so I could give it to my friend.
That should have never happened. There should have been brochures in that emergency room for those who had loved ones there with concussions and brain bleeds and strokes and heart attacks. I couldn't find it, and even to this day there is still no information there in that waiting room. Why is that? If I ever find out why, I'll be more than happy to report it, that's for sure!
Update: Charlotte passed away 5/15/2006 almost 1 year from her first brain bleed. They say it was her heart that just gave out. God Bless You Charlotte! I will miss you something fierce!
This information should be so easy to find that anyone can go to their doctor, or hospital or therapist and say, "Excuse me, but do you have any information on brain injury?" Better yet, the doctors should be tripping over themselves to give this information out to the family and even the patient. No excuses! None!
If I have my way this will be how things are, and if I have my way every doctor in town will have a list of other doctors who they can refer their patient with a head/brain injury to. No fighting with work comp, or their doctor or any therapists. It's automatic! And those doctors, therapists and nurses will know exactly where to find this information for that patient and family. End of story!
If you've found a superb doctor or therapist please send me their information so I can add them to my doctors page. This could be the best thing that you can do for another person who has had their life turned upsidedown. You don't have to be a speaker. You don't have to be a petition pusher, but you can pass on the information that you have learned from your experience to others who are so desperately seeking it.
For those who have passed that information on to others, educated your doctors, therapists, friends and family, I thank you from the bottom of my heart! You have God's Blessings I'm sure, and you have my blessings too!
Spread the word for those who need to hear it! Thanks so much!
~ barbara jean ~