bjscloset.org
Sept '09
September 1, 2009
Has it been that long already? Geez, how fast time flies, 'eh?! I was looking through and reading my own thoughts when I noticed how long it had been since I updated this page, so I decided to stop long eough to put "fingers to keyboard" and fix that problem!
I'm 11 years and 9 months shy of my 12th Anniversary post BI. I almost have been disabled as long as I drove a truck and that seems like forever! Being disabled can be more of a drag than you may think, but I'm blessed with having many hobbies that I like, and because of the overload, I need many of those days through the week just to bug out or even take a nap if I need one so it doesn't seem too bad to be stuck at home a lot.
Remember, my sleeping patterns have changed so drastically through the years that it's a "Fight and Flight" thing of it's own. One of the problems with having sleep problems is when the fatigue hits you there isn't much else you can do but stop what you're doing and lay down. I've even had what felt like heart palpatations because of the fatigue and after even a 10 minute nap things can look totally different when I get up, but things are different every day so it keeps you on your toes!
It would be great if someone would look more into the endo problems that a BI'er has (thanks for your hard work Tony), but as of yet, nobody will admit that there's a real problem, although many doctors will admit it when you talk to them in person, they just don't have any real "on paper" testing/studies to look at in reference to specifics. Isn't that a shame?!
Through the years I have learned that wear and tear on the damaged brain have done all sorts of things with my innards (I've been in Missouri too long I guess). They don't always "talk" to the correct areas (or maybe that area just doesn't listen right?), and most of the time we're just too forgetful to remember to ask a question when we see our doctor, or what I've personally found....no doctor wants to "talk" about it with me, but they'll handle everything ELSE but the BI stuff. HELLO! I didn't have these problems BEFORE the BI and I refuse to believe that they aren't related! I still have faith though that somewhere, somehow, they will all of a sudden decide that there really IS a relationship between having a BI and Endocrine problems! It's a good thing I can't hold my breath quite that long though, but I'm not giving up hope! ;-)
Since I gave my last update, I have lost my mother (November 6, 2008), who had been in a nursing home from a fall/brain bleed and multi strokes in December, 2005. There is one thing I found out 2 months before she passed, and that was that she KNEW what I was talking about all the time, she just didn't have control over her speech enough to tell me!
I look back on things now and hope to God that when it's my turn to go that it's not drug out like it was for my mom. That I'm still able to DO things with my body and my brain and my VOICE! It seems so many times that our voices are not heard. Our thoughts are not given a chance to be passed on to those who can hear, or just those who will LISTEN! I hope that some of my words have hit open ears and that some of these thoughts have been passed on to those who can be open enough to try to help themselves or someone they love.
The 23rd of June, 2009, less than 2 days after having a fairly long conversation with him on the phone, I received a call from my brother letting me know that my dad had pass also. I was in shock! Two days before (on Father's Day) when dad and I talked we were discussing the numbness in his face that his doctor had thought was from a mild stroke. I know he was scared silly from that news, so I am glad that things happened quickly for him because living with seeing his wife of almost 65 years die slowly before his eyes from a BI was as harsh a reality as one could have and still walk this earth. I will miss them both, and will continue to remember all the years I learned so much from both of them and I'll cry a tear when I need to also.
As the years passed once my mom was taken to the nursing home from her fall, I kept trying to explain to my famliy how she felt, how and what she might be thinking, and things that they needed to try to do for her to help her recover to the fullest. Most looked at me like I was crazy. Her therapist was amazed that I had recovered as well as I had for the injuries I sustained and that's when for the first time in my life I was able to give a therapist an idea of how things work from the "other side of the fence!"
I am grateful that I was able to give her some insight on "Life Through New Eyes" from a high functioning BI'er, but I know that it's just not enough, spreading the word just doesn't seem to be going fast enough or far enough reaching. It did feel good because I was able to explain things to her in easy language, something that hasn't always been easy for me to do since the BI, but the right words just came out that day and as I explained, she listened and then you could see the light come on, and that's when I knew that my information had gotten across. Ah, what a great feeling to be able to pass that on!
Living with a BI isn't the easiest thing for us to do and although many have had therapy, it still is a life long road to walk. I still believe that we need therapy off and on if not just to renew our memories, thought processes and instill those ways into our psyche. We become so used to doing things a specific way that we no longer are flexible to do them any other way, so "touching base" with a therapist once every few years I think is a great idea, just to help us "cope" with life after BI.
As the saga continues.....I pray you continue learning and passing that knowledge on to the next person.
~ barbara jean ~