Complaint box

Have you seen the complaint box? I really need it. I have a whole stack of complaints I want to write down and shove thru the slot in the top of the box.

Yes, I’m complaining today. Alot. A whole bunch. Guess what? I’m human and sometimes I have a pity party.  Oh well. Thats ok. I’ll get over it.

I’ll loudly profess that sometimes I hate this second chance I’ve been given and wish I would have just died that night. I’m tired of waking up with nasea. It’s been particularly bad yesterday and today. I feel like I could throw up any second. I’m tired, but for the past few nights I only shake and toss and turn till I finally fall asleep. I’m tired of stuggling to plan out my day, instead I want it to be easy like it was, before the accident. I’m exhausted by thinking thru things that only used to take half of the energy it did before. I’m so sick of every damn breath being a struggle and causing pain into my neck and what’s left of my right lung. I’m tired of my side vibrantly radiatingng pain every second of the day, never getting better but often getting worse and cramping and burning. I hate having to battle anxiety and reminding myself to just enjoy the ride. I fear the frequent headaches. I hate, really hate having to stop whatever I’m doing to take a meditative break so my brain can rest and I can get thru my day.

Things used to come easy to me. I never even thought about breathing before. I suggest you be thankful for what you have, before it’s gone. Because it sucks when it is.

Just for today, I want to be normal. I want all the bad stuff to disappear and life to go back to the way it was. But, that would be keeping my thoughts and hopes in the past. That would not be good. I need to always look forward to tomorow. Besides, what IS normal anyway, and have you ever met ANYONE who is?

I guess I won’t be winning an award for a positive, unfailing attitude today. So what. I don’t care. I’ll settle for the crying, snotty nosed, feeling sorry for myself award. I’m taking a break from positive thinking today. Life is real and lots of the time life is hard. That’s reality. I can deal with that…….right after my pity party is over. Just give me an hour our two to get my frustrations out and cry. Yes, I do happen to be crying, I’m crying so hard right now I can hardly see through my tears to type. But thats ok. Thats my life. And the beauty that comes out of all this pain is that by this afternoon, I will put that damn smile back on my face and go on. Just like we all have to, want to, need to. Because even though that little voice in the back of my mind says to give up, I never, never, never will. And if I won’t give up, then you sure as hell shouldn’t either. I don’t ever want to miss out on the beautiful things in life, the simple things that make me smile.

It’s ok to cry, it’s ok to get frustrated, it’s ok to rest for a while, it’s ok to have a pitty party too. But it’s not ok to give up, so I won’t. Ready? Here I go. I’ll wipe away those tears, put that smile back on my face and keep on going.

Fishy truck ride

I’m so excited to go on our fishing trip. I’m even looking forward to the 6 hour drive(I’m lying). I absolutely love to fish (the truth). Plus, my husband and youngest daughter are going and my dad will be there too. It’s near a place where he and I have spent alot of time. Dad with his grandparents and parents and when it was my turn, me with my grandparents. But of course, the location is a secret. Aren’t all good fishing spots a secret?

I’ve been trying to focus on the positive things about this trip for a couple of weeks. Today’s the day and I am absolutely making this into the most wonderful trip on earth and telling myself how safely we will arrive and that nothing bad will happen while we are there and we will all arrive back home safely. These are the things I say to myself to convince my fears to take a hike. Sometimes I actually yell at them. Call it crazy, psycho, neurotic, weird, whatever. I have lots of names for it. But the most important one is fear, anxiety, broken neuron pathways and PTSD. It all starts as soon as we plan a trip. This little voice in the back of my head whispers “if you get in a vehicle, you’re gonna die.”. I gently push the voice and ugly thought away. As leaving day approaches the voice gets louder. “IF YOU GET IN A VEHICLE YOU ARE GONNA DIE!” Oh Lord, here we go again. I’m not so gentle at telling it to leave. I yell back. “GET THE F#*$ OUT OF MY HEAD!” Sound a little crazy? It’s not, it’s actually strategy. Healthy, no pill, cognitive talk to get people like me thru the day. So begins the tiring battle of wrestling my PTSD and trying to just enjoy the ride.

Ever since the accident, when I get into a vehicle, or plan to get in a vehicle I have flashbacks and become terrified of getting in another car crash. Very normal for somebody who has been thru a traumatic experience of any kind. We tend to relive the experience over and over. My blinders have been removed and I know exactly what can happen to a human body and brain when you crash. I have the scars and daily struggle with a TBI as constant daily reminders. Those things will never let me forget, or be completely relaxed in a vehicle for an entire trip.

My mind says, I’m going to die, my heart says I just want to have fun and enjoy the trip. But vehicle rides, or in my case truck rides, because I don’t drive a car, and never, I repeat, never will, turn into a fun park rollercoaster ride. It’s the PTSD working overtime. Plus add in the broken neuron pathway between my eye and my brain that tells my brain the direction I’m going. When I am in motion the signal gets mixed up and it makes me feel like I’m constantly sliding to the right, out of control, even when I am going straight and often when I am completely still. I have spent hours on dizzying exercises, only to be sick all day, trying to retrain my brain and build a new neuron pathway around the broken one. I’ve logged even more hours on the positive talk. It’s been worth every minute. Because it works. Most of the time. Until I’m tired or get spooked by a car pulling in front of us or some dumb move by another driver like texting while driving,  or just that silly broken neuron pathway wanting to play tricks on me. Then I’m back to panick mode and the roller coaster feeling is right behind it.

I’m somewhat embarrassed to admit the chaos of what goes on when our family heads down the road. I should record it for U Tube and I would make millions. Then maybe we could laugh at it someday.  It goes something like this; Dan is driving on the freeway, going 75-79 mph, because I won’t let him go any faster. Me, I’m riding along just fine. Until, all of a sudden the neuron pathway screws up, I jump while at the same time completely sucking all the available oxygen out of the truck. (In my mind we are flying off the road to our doom again)Thru tears and a full-fledged anxiety/panick attack I try to catch my breath and ask Dan to “PLEEEEEEAAASSSSSSEEE slow down!” You know, to like 10 mph. Of course Dan stays calm thru out this whole explosion going on in the seat next to him and quickly rolls down a window to replenish the oxygen level to normal. (I’m lying again) Actually, he yells, “Diane! You scared the SH!$$ out of me!” Of course I did, and I know it, along with everyone else in the vehicle. Then I sheepishly say I’m sorry even though I really can’t help it. But sometimes, no matter what I do, relaxation techniques, positive talk, and sometimes earplugs and a hood over my head, it happens anyway, it’s just the way I am now. I used to cry and be ashamed at the whole scenario until I found out about the broken neuron pathway and PTSD. Finally we all understand why I do it. Now I embrace it. So now, Dan, after he composes himself  reassures me and tells me I’m ok. Katie reminds me to breathe and as soon as we can we try to laugh and keep me distracted. Anything but sedating me or drinking a couple of shots of Jack Daniels before I climb aboard. And the journey continues.

So now, along with the packing and preparations I add a heavy dose of rest and positive mental talk. I really could die at any moment. Any of us could.  But I’m going to try my best to have a whole bunch of fun before I do. I refuse to stay home too scared to leave the house. I have a lot of living to do and I am going to enjoy every minute of this second chance I’ve been given. As I climb aboard my big safe truck/roller coaster ride, I smile, take a deep breath and hang on for the ride. (or…..raise my hands into the air, close my eyes and scream till it’s over!) Wish me luck! We’re headed to where the big fish are.

Veteran’s Day

  This is a patch that goes on an Army uniform. Once on my husband’s uniform 21 years ago. It’s an 8th Infantry Division patch. He was in the 12th Engineer Battalion that helped make up the 8th Infantry Division. His best memories are of this time of service in Germany. Echo Hard was their name. I love to listen to the stories and see the look on his face as he remembers the times. The men were really close, like brothers. Reading their posts on Facebook this morning told me that they still have that special bond years later. They still keep in touch and will never forget each other.

It took me a long time to understand why a soldier would want to risk his life for low pay, possible injury and maybe death, not to mention little recognition and support after his service from his country and government. I have seen what war does to the minds and bodies of the men and women who serve, and I don’t like it at all. But thanks to my husband, who helped me, I get it. I understand. So I want to say a special thanks to all of you in “Echo Hard”. And a big thank you to all our Veteran’s today. We appreciate all you have and continue to do for us. You won’t be forgotten.

All soldiers return from service, wartime or not,  affected by their experience and/or injuries. Some you can see and some you can’t. A RAND Corporation study Invisible Wounds of War states that there are  400,000 total brain injuries sustained by soldiers serving in Iraq and  Afghanistan.  And more every day. Find out about Post Traumatic Stress Disorder and how it affects our Vets in these videos from U tube, Coming Home (Part 1) and Coming Home (Part 2).  This music video, PTSD by SGT DUNSON says alot about the realities of dealing with PTSD after a soldier returns home. Watch it, you will see. There are soooooooo many stories, I had a hard time picking a few good ones for you. So when you see a vet , thank them, and know what you cannot see.

Get involved and see how you can help. Find your Local Veteran’s Affairs Department here. Find your local State Representative and ask him about the bills in-house that are changing health care for vets. And tell them our soldiers need MORE than they are getting now. But most of all, be knowledgeable and understanding of our vets and all they go thru.

I thank God everyday for keeping my soldier whole. Love you Dan! And yes, I love you too ECHO HARD!!! Keep in touch boys. and Thank you!

Waking up from a dream

Shortly after our decision to move out-of-state, we found the perfect place to build a house. It was down in a secluded canyon, no neighbors and had a great view of the Bear River and the mountains. 5 bedrooms, 3 bathrooms, a den, living and family rooms, an outdoor kitchen with an amazing view of the river, a huge garden, a horse, two rabbits, 15 chickens, 2 lizards, 2 cats, three dogs, and an orchard later we had our dream home. Everything we had always wanted.

Our first year in the house Dan bought me a peach tree for our anniversary and planted it right outside the kitchen window so I could watch the blossoms come and go every spring, listen to the birds and hope for fruit every fall. The very next year it produced a couple handfuls of small peaches. So I made a pie for my family.  My peach tree is now taller than me. It’s big and bushy and full of peaches. It looks like it will be its best year yet.

There comes a time when you have to make decisions. Responsible decisions based on reality and some times that reality comes crashing down on your dreams. We have recently decided to sell our home. There are many reasons we are selling our home, but the ones I’m thinking about today are personal and physical. I can’t physically take care of a house this size anymore. Of course Dan helps, family helps, and friends help too, but it’s just too much. Plus having only one income, since I am unable to work and can’t start school (doc’s orders), make it a struggle to maintain the lifestyle we are in.  Add to that my developing asthma and allergies that left me sitting around with no energy more often than I liked this summer. Having only one lung that works really puts a squeeze on the breathing when you have asthma and allergies. Besides, who wants to live in a big, empty house? We have kids in college and only one at home now. We both knew this day was coming. It will relieve a lot of stress to simplify and reduce the things in our life that we can control. Then we can be as prepared for the things we can’t control as possible. We have to responsibly face the fact that my health is not the best and will only progress as life goes on. Not doomsday, just being real. We are planning for our future so the transition will be easier. But the future is coming faster than I planned.

A strong windstorm came thru the canyon this summer. My tree was really bending in the wind. Dan heard a crack and went to the kitchen window. My tree lay broken on the ground. It snapped in half! The big, bushy, peach filled top was now gone. It just couldn’t take all the pressure from the strong, blowing wind. I cried for a week over that tree.

Broken

When I finally got the courage to go and look at the damage and clean up the mess, I discovered that there were 4 small wilted branches just below the break. I grabbed a saw and smoothed up the damage. Sprayed on some pruning sealer, gave it some water and headed to the house with a hopeful heart.  For the rest of  the summer and into fall, I watched it through my kitchen window.  The tree began to slowly come back to life. And it was beginning to grow again. The birds came back too.  And maybe next year it will produce some fruit.

Growing again

Well, the “For Sale” sign is in the front yard by the road. I’m sad, but also very excited for a new adventure……..and a smaller home to clean.  Possibly by next fall, despite the economy and God willing, our house will have sold. Maybe someone will be baking a peach pie for their family.

Sometimes life is strange. It doesn’t always turn out the way we wanted. Dreams come and go. Sometimes we are broken and sometimes it seems to all go to hell. But I’ve been to hell and back again. I know the way, and if I let it, the journey will make me stronger because of it. I will continue to grow wherever I am planted. Even though life doesn’t follow the plans you made, If you stop and look around,you still end up in a really cool place after all.

Grocery Guru……..NOT!!!

I am waving the white flag. I surrender. After years of giving up the list, sometimes having Dan pry it out of my clenched fist, only to stubbornly try it again. I am finally  handing over the grocery cart, the coupons, and the list, to Dan. Again. Some part of me just does not want to give up on this one. Maybe because of the fact that if you are a woman you should be able to shop, right? And men claim we are very good at it. Well, not me. I am really bad at it.  I am actually missing the tools required to do it. I will probably try again though, soon. Lord help us……… and the budget. Good thing Dan is good at juggling.

I have wandered around stores aimlessly.  I have lost money. I have gone WAY over budget. I have brought home stuff we don’t need. I have filled a cart, only to find it full of un-needed items, wondering when I put it in the cart while trying to put it all back and overwhelmed I abandoned it at the store.  I have done everything but run away, screaming. (ok, maybe I did that once) And by the time it is all over with I have a huge, pulsing, can’t function headache! Now I have to pay for the experience. Get everything to the car. Get everything home. Get everything in the house. Put everything away. Sounds simple to you. For me it is overwhelming. It leaves me Dazed and Confused. Total overload. Total failure.

fail·ure (flyr) n.

1. The condition or fact of not achieving the desired
end or ends: the failure of an experiment.

2. One that fails: failing at one’s job.

3. The condition or fact of being insufficient or
falling short: a crop failure.

4. A cessation of proper functioning or performance:
a power failure.

5. Nonperformance of what is requested or expected;
omission: failure to report a change of
address.

6. The act or fact of failing to pass a course, test, or assignment.

7. A decline in strength or effectiveness.

8. The act or fact of becoming bankrupt or
insolvent.

Most women are good at shopping. Really good. They collect coupons. They run to multiple stores with children in tow to get the best deal. They feed huge families on small budgets. They provide their household with food and other really cool stuff. They make special occasions out of it. They go with other women and talk and have fun during the whole experience. They actually ENJOY shopping. Weird. Not me. I am a woman with out the shopping “gift”

I am currently sitting in a nice new office chair so that I can blog about this epic fail to you in comfort. One item. One little black office chair. Simple right? Run to Staples, buy office chair on sale, come home, put it together and enjoy, right? Ummmmmmm. Well, that’s not how I do it. I go to Staples. Strategies ready.  I wander around the store and find the chairs. I look for prices. No prices to be found. I have brought Katie with me. She has been instructed not to say anything so that I can concentrate on my purchase and get through this seemingly simple task. . She finally points out to me that all the chairs have tags on them. BIG tags on them. With the price. Convenient right! Why, oh why, can’t I see them until she shows me? It’s my TBI shopping curse. Damn curse. Strategies, by now are nowhere to be found. I walk around the chairs. I leave the chairs. I go back to the chairs. We pick out a chair. Katie carries it to the cashier. We pay for the chair and Katie takes it to the truck. I need a break from all this action. So I send Katie into another store for batteries (yes, I forgot to get those in Staples, even with my list right in my hand) while I take a break. Feeling refreshed I grab the flyer we got with the chair at Staples. Oh jeezzzzzz. I find a much better chair for a much better price. So when Katie returns we head back to Staples. She carries the chair in. We buy the better, on sale chair. Katie carries it out to the truck and home we go. Only to find out I am missing $30 somewhere? We never find it. It’s not at the store, it’s not in the truck, it’s not in my purse. While Katie puts together the chair, I retreat to my bed for a much-needed break and I surrender to an exhausted nap.

So here I sit in my new chair. Firmly seated in the fact that I am giving up the grocery cart one more time. Even after applying strategies from my therapist, I still can’t do it. I’m a shopping drop out. No matter how organized or simple the list. I admit defeat.  Until next time……………..

Lost & Found: What Brain Injury Survivors Want You to Know

Lost & Found: What Brain Injury Survivors Want You to Know

Barbara J. Webster, Lash & Associates

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. Everything 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.

Living Well with a Disability

Since my TBI diagnosis I have been going to a few support groups in my area. I have a strong desire to meet people like me. People that understand and know what I am going through. Somebody I can relate to. No judgement, just understanding. But I have not been a regular attendee. I am very sporadic at showing up.  Because……… that would mean I have to admit that I have a disability. Most of the time I am in denial of my different abilities, and going to these activities would mean I have to admit that I am disabled by my moderate/severe TBI and chronic pain and fatigue. You can’t see my disability, so that makes it very easy to hide. I have become a master of disguise.  So when one of my friends from my support group sent me a Facebook message wondering why I wasn’t at the “Living Well with a Disability” class, I rolled my eyes and thought to myself, “….because, I don’t belong there”. My friend went on to say that the class was really good and that I shouldn’t miss it. Damn. So, I talked to my husband about it and now that I am writing this I think I may have been the victim of a plot to actually get me to the class.  So, my husband says ” if nothing else, you should go because Serenity wants you to go. She likes you and wants you as a friend” Oh damn again! Fine, I will go, but only for Serenity.  I am very stubborn. God bless my husband for knowing how to handle that wonderful quality in me. So I went. And I will never be the same.

All the therapies, all the exercise, the diet changes, the medications, the Dr. appointments, nothing has helped me embrace who I am now more than the seven incredible people you see in the picture above.  They look like everyday average people, but they aren’t. They are the strongest group of people I have ever met in my life. They would kick your ass in a competition of inner strength. Soon, I wasn’t going for Serenity, I went for me.  I never missed a session. This is why.

Every session began with treats and small talk. Not your normal small talk.  Not ‘oh the traffic was horrible today’ or ‘I’m having such a bad hair day’ or ‘my car wouldn’t start today’.  I can almost guarantee that when you think you are having a bad day, theirs was worse. One was telling of her ordeal and red tape of trying desperately to get a seizure dog and getting denied and starting the process over again. Another was telling how hard it was to even get here, in her wheelchair, she was exhausted before class even started “But I’m here” she would say with a big smile on her face. Yet another rambled on about random things and would not stop until guided to, his injuries to the frontal lobe of his brain do not tell him he should stop talking, he spoke of the trials of getting and keeping a job.  Another cannot live with his wife due to their disabilities and talked often about living apart. My friend Serenity talked about the fact that her husband left her because of changes in her personality from her Traumatic Brain Injury and the struggles of keeping a job with a TBI. And another had to keep leaving to go outside and smoke because he couldn’t sit still and had to take breaks. You see, all of us have brain damage of some kind. So our small talk was very different from what you usually hear.  I listened to each one of them talk about getting through their days with a disability. I was amazed and took it all in.  Finally I had found people like me. Here I was feeling sorry for myself and hiding my disability every chance I got. They embraced theirs and faced it head on everyday.  Real, hard challenges. No complaints.  And they talked about it openly and with a positive attitude, just like it was an average day for them. I needed to find out how they do that, and I did.

When we eventually got settled,  our leader would go through a chapter in our book and we would discuss it together.  We went through chapters together like Goal Setting, Beating the Blues, Healthy Communication, Physical Activity, Eating Well, and Advocacy. I was fairly quiet for the first few sessions, just taking it all in, amazed by the incredibly strong people I was surrounded by every Tuesday, once a month for just a few hours.  The course was really good. Serenity was right. But what each one of us brought to the class was even better.  I soon realized how much they had to offer with their experience and wisdom. We all have a disability but what we were all able to bring to class was the good stuff. Sure the book was great, but it led to some incredible discussions on how to really deal with life when you have a disability and all the challenges that come with it, with people who go thru it everyday. When I felt comfortable I began to talk more about some of the issues I dealt with and in doing so I began to embrace the woman I am now and not hide my disability. And in return for opening up, I got a wealth of information, encouragement, love and support from each person. I have a huge amount of admiration and respect for my class mates. They are some of the strongest people I know and I was lucky enough to get to experience their strength. They always had a positive, never give up, tried and true answer for things I used to think were roadblocks. Instead of giving up, they took a deep breathe, gathered all their strength and courage and went around the problems and found another way to accomplish things. And they shared it with me. Thanks to Serenity and my husband for getting me up off my stubborn, feeling sorry for myself butt, and into class, where I most definitely belonged. Funny thing, I don’t feel sorry for myself anymore.