file:///C:/Users/Ramona/Downloads/biawinter2013web%20(2).pdf[...]

I feel like I have succumbed to the lowest point in my life. I have, after much thought, personal conflictions, advice from those I trust, and in a true effort to beat the odds on this TBI - have added a new medication to my daily intake of meds. as recommended to me.

My goal was to get off as many meds as quickly as possible....not add more. I have never been so fatigued on a consistent basis in my life. This is just ridiculous.

I am grateful for my life...that I am thankful for every day, however, really struggling with the differences of my life before the wreck and the life I am now and how this now is the "new normal".

Finding an ability of blending of the two selves would be a good thing. All in due time I suppose. All in due time.....[...]

This link is dedicated to all my children and to children who have a parent who have experienced a TBI. This girls blogs are awesome.......and it might help you guys to share this link with your kids....

http://www.brainline.org/blogs/jannaleyde/?viewall[...]

WHAT BRAIN INJURY SURVIVORS WANT YOU TO KNOW

(and mannnnn do ALL these apply to me - holy cow and boy howdy!!!)

I need a lot more rest than I used to. I’m not being lazy. I
get physical fatigue as well as a “brain fatigue.” It is very
difficult and tiring for my brain to think, process, and
organize.Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or
“all better” on the outside. Cognition is a fragile function for
a brain injury survivor. Some days are better than others.
Pushing too hard usually leads to setbacks, sometimes to
illness.

Brain injury rehabilitation takes a very long time; it is
usually measured in years. It continues long after
formal rehabilitation has ended. Please resist expecting me to
be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. 

Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. 

Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. 

Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

*************************************************************************************


Created with the assistance of the "Amazing" Brain Injury Survivor Support Group of Framingham, MA.
Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission.

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html[...]

WORST TBI MOMENT SO FAR: July 14th, 2014 was the day of my mom's birthday. Her name is Ramona and she actually started this blog for me. 

I was so distracted and overwhelmed that day. I remember thinking I was forgetting something very important all day long but just COULDN"T REMEMBER.......and it was almost Midnight when my oldest son said " hey mom isn't this the 14th Nana's birthday"...................and all I could do was cry and feel complete and utter ANGER at my brain. Then I was mad at mom for not reminding me. It was so important. Noone ever hardly remember my mom. Since my dad died, all she has is my family and me - her daughter.......a handful of friends.....not even a birthday card................I sooooooooooooooooooooo SUCK!!!! I really am hating this forgetting thing. It's really affecting important things......especially when I need to remember something super important in the moment it needs remembered. I should have written it down.....but I thought - how could I forget.....after all.............it is for my mom.

Something I normally never would have overlooked or forgotten.....lost in the recesses of my distractions and inability to recall it to my immediate memory!!!! Still feeling guilt over that. Still feeling miserable. 

So could everyone that reads this please wish her a Happy Birthday - even though it is late because every day she is alive is a blessing to me and should be celebrated!!!![...]

...and angels gather round about to protect the true at heart....

*************************************************************************

"Over 52,000 people die from TBI in the United States each year and 275,000
are hospitalized. Many more are treated and released from hospital emergency
departments, seek care in a doctor’s offi ce, or do not seek care at all.1 Michigan
data show that each year about 12,000 Michiganders have a serious TBI - one
that leads to hospitalization and/or death.".....

"The brain is a very complex organ, and each injury is different. Therefore, the
path to recovery and rehabilitation is diffi cult to predict. The symptoms of TBI
may not be obvious at fi rst, especially when combined with serious physical
injuries. Outcomes can range from no apparent effect to severe impairment."...

Taken in part from Michigan.gov Resource Guide for Traumatic Brain Injury
http://www.michigan.gov/documents/mdch/Michigan_Resource_Guide_V3_201402_7.pdf

(It's like someone stepped inside my body and my mind and wrote this for me and about me and for my family.....so many puzzle pieces fit together - this gives me hope - because someone somewhere knows what I am....what we are..... actually going through and understands)[...]

GOOD NEWS:

Okay so it's been almost a month since I have been on here. I have had a lot going on. Some good some not so good. So we will start with the good first. I owe a HUMONGOUS thank you to The Rustic Resort for assisting me with a Fundraiser. If you want to make a donation this year to a worthy location - please consider them. They are located in Benzonia, MI and went ALL OUT to make my husband, 2 oldest kids, and my baby Austin feel welcome. They set us up with food and all kinds of remarkable and thoughtful things. I have thanked them many times privately, but want to thank the Benzonia Chamber of Commnerce, The Backwoods Band, any attendees/volunteers, and The Rustic Resort Publicly for making every attempt in helping my family with the fundraiser that The Rustic Resort sponsored. This helped us greatly during a time of unimaginable need. Thank you does not seem like enough. These are good people and if you are looking for a place to go camping or just get away.....my husband assures me this IS the place you want to visit. So look them up, drop them a letter of appreciation or positive encouragement or a donation - just for their business. They are not a nonprofit but their hearts are larger than any nonprofit you will ever encounter. Angel and Jack and all those who contributed to the effort. THANK YOU AGAIN!!!

My AutoClaim got approved. THANK GOD!!! Just about a week ago now. I have been paying bills that they don't cover (utilities and what not), they are paying medical bills (finally after 7 months) and my providers - ALL of THEM - well I can think of probably 2 -3 specfic people who don't deserve to be paid.......but the rest TOTALLY do. I can also now get prescriptions without paying for them out of pocket. This will be a great stress and financial relief for my family. This was a glorious day when I got that email and letter in the mail. I didn't know whether to cry or smile - so I did both. A weight lifted.....a boulder I could walk around....or more aptly roll around (wheelchair humor joke there) - and made me feel like a little less of a burden around the house to my family who has done so much to help me in this amazing and most difficult journey - I feel like I am actually contributing something - crazy how we work so hard not to let other's approval of us matter and this approval meant more than I can even form into words that I was thinking at the time or continue to think about. I now feel like I don't have to worry about the future or having a place to live, etc and can focus on what matters - my recovery and my family.

Also in good news my appeal from the informal hearing to a formal hearing was accepted by a real judge. This is good news to me. So I am looking forward to it. Now to find a traffic attorney who handles civil infractions that are contested and can be compassionate yet assertive with all involved. Any takers? LOL.......

I am using a Tens Unit on my R injured shoulder 3 times a day. I just got it at the end of last week and it is AMAZING. Leaves my shoulder and arm feeling exhausted but gives a bit of pain relief when having my "tens session". I have to get better about the 3 times a day thing as I forget to do it......imagine that....someone with short term memory problems forgetting something.


WEIRD NEWS:

I actually had a person tell me I didn't deserve a fundraiser and a LOT of other negative comments and negative energy. This was a person we actually helped a LOT at one point in their lives when they were at their lowest.....so this was somewhat of a "really?" moment. Wow. Didn't even know how to respond to that one.....all my thoughts would have been negative and sarcastic and totally inapropriate - so I tried to stick to the facts and not emotional reactions....not sure how well that worked.....because it takes my brain a little bit longer than usual to think of comebacks and comments like that these days....

So I have this absolutely amazing Primary Care Physician whom I love. I have been with her for a long while (way before and after the wreck) She really advocates for me and is blunt with me and I value that. I am also going to the best Brain Injury Rehab place in our City (from all I have heard anyway)...have a medical case Manager, just assigned a Social Worker by same said Brain Injury Rehab.......yet the insurance company wants me to see THEIR Dr., shrink, and Dentist.................is this normal stuff when dealing with an auto accident or benefits in general.....? How do I know THEIR Dr. even specializes in what is going on with me......?

BAD NEWS:

We are having challenges with our oldest daughter ( and that is a gutteral understatement). I think this whole situation has set me back in a lot of ways in my recovery process, and has definitely affected my kids and the family as a whole, but I have never been a quitter or one to give up on anything......so forward we go!!!.....We have been dealing with her challenges for years.....she just decided to take it to the next level, and things we have suspected all along have been boldly brought to light. She apparently didn't take us seriously when we said we love her enough to never give up on her - no matter what she says or does. Love does not mean condoning.. Well, she is getting a taste of that medicine now - learning life the hardest way possible. All we can do is hope for safe progress and positive choices. Hopefully, all those seeds planted over the years will drown the weeds she is sowing in her life right now. She is an amazing writer, artist, and talented in so many ways - it is really is a situation of tough love at this point with her and her choices - something I suck at.....especially now, because on one hand my brain needs to understand and is trying to, and on the other hand realizing that I never will and in the end it doesn't matter if we understand or not - just that she is okay - and we continue to evolve and move on. However, we have all decided it is healthier for the family to make the decisions we are making - because we will always do the best to protect our children....even if it is from themselves. Even if that means that other relatives or friends don't agree or understand all the details and minute details. If they wanted to know they would have been involved in her life all along in every way possible. This is also a stark realization we are coming to accept. That judgement runs deep with those not living in our shoes. Amazing how everyone has advice to give to raise a child, but isn't willing to get their hands dirty in the process of that advice; and that is all I will say on that on this blog from now on......I've said it - and that's that.

more blogs to come as I am in a mood to let things out.....a dark hole from whence I cometh sayeth the spider to the fly.......sometimes I feel like the fly - stuck and unable to escape from this web of seeming limitation all around me both physically and emotionally....but this too shall pass away.....however... I keep hearing "it is a PROCESS"....a "PROCESS" that I am progressing through slowly but surely.......

Brain Rest! HAH! What a joke! On an island with no sounds, lights, or responsibilities - then maybe.....but not in the real world with real life obligations and a family to raise.....it's not all about me after all.....though sometimes it needs to be because I cannot maintain the peaceful requirements that are needed for that to happen.....but again....its all a "PROCESS".....

....more to come[...]