For Beta or for worse: September 2013

Monday, September 30, 2013

Your peace of mind plan

So for my last post in September for Brain Aneurysm Awareness Month I want to touch on another subject. Not an easy one, but necessary. This post will be long, I will take you through the most frightening night. Why? So you get a glimpse of what it feels like to be making decisions at a young age, on what could be your death bed. To make an impact and put it at the front of your mind to get papers in place.

Your Plan - Call it your peace of mind plan.

You want to know what doesn't give you piece of mind? At the young age of 26, being a single mom to a 4 year old, that is your world, and signing a handwritten Will as you are being rolled into an ambulance at one hospital because chances aren't great that you will survive that ride, but even lower if you have the surgery where you are. What doesn't help is that ambulance ride where the driver has to keep slowing or stopping because so many ignore the life-threatening sirens blaring.

As we are young and our kids are young we don't give enough thought to the what ifs. I was a healthy, active 26 year old who suddenly was in the fight of my life, not once but twice.

After spending just over a week in ICU and finally getting better, 2 days later a blood clot came loose off my chest catheter and hit the other side of my brain. It was a 1 in 1,000,000 chance. Suddenly I couldn't breathe and then the seizure started. I remember the nurse looking over at me as I pounded on my bed because I couldn't talk and her face, I remember code blue being called, I remember the crash pads, I remember the nurse trying to put an i.v. in me as I was seizing and I remember my thought process.

I talked myself through that entire seizure, I told myself that I had to calm down, try breathing in through your nose and out through your mouth, I remember asking God to calm me, I remember telling myself to calm down, slow down and try to breathe. Mostly though I remember telling myself, "Calm down, breathe, just breathe, in through your nose out through your mouth, Michael and Morgan are on their way, you can't do this to them. You can do this. Calm down, breathe, relax your body, you have to call your Mom, you can't let her bring the kids to see you like this. You can do this. Calm down, breathe, just breathe, here it comes, you are getting air, in through your nose and out through your mouth. You got this. Finally I could breath again, the seizing started to subside and I begged the nurse for a phone, which of course, she didn't want to give it to me. I said you don't understand, I have to call my Mom, she is bringing Michael and Morgan, please don't let the kids see me this way, they will be too scared, please get her on the phone. Thankfully we were able to get a hold of my Mom, I don't know what she told them, they were only 4 and 2, but what I did know is I wanted to protect them. Morgan is my niece by the way, her and Michael have been like brother and sister since she was born. They had just seen me the day before feeling better and eating with them and having fun, I could not let them see me that way.

What I also didn't know at the time was my best friend was walking down the hall with Schoop's and had been told to go away. I was so sad that she had to witness and to not know what was going on.

More that the aneurysm or the surgery, the above event is what I keep in the back of my head. It is why we have a will, it is why we have directives, it why I talk about what I want should something happen, it is why I have life insurance. I did not want to ever be face with another situation where I had to make impossible choices lying on a gurney. Talk about it with your loved ones, while the threat is not there and emotions are not high, tell your spouse, parents, sister, brother what your choices are. Mostly though, make sure that you have provided for your children, so they do not get caught up in family emotion on who is going to raise them, who is going to pay for them, etc. I knew I would never have to worry about Michael, my parents would have always taken care of him, they would have always provided for him, but at 26 I never thought I would be faced with those realities.

Papers you need: Will/Living trust, Living Will, Power of Attorney (even for your spouse), Health Care Representative, DNR if you choose, which Indiana just changed, so you have to revisit that, immunization records, allergies, medical records of prior surgeries or hospital stays, medical insurance cards, insurance policies, life, auto, home, disability or any other. Have social security cards, bank numbers, policy numbers, copies of your driver's license, passport, vehicle titles, house deed, boat or other "toys". Who will have say over you if you become disabled? The chances were high that I would have disabilities and although I know my parents would have taken care of me, we don't all have that luxury. What about your parents? Are there other siblings involved? If so, their wishes need to be spelled out, it needs to be talked about? What are their wishes, do you know what they are, is it written down? Again these are things that need to be take care of while your emotions aren't running amok.

I also have these documents electronically in case we need them, I just need access to "the cloud" and can't access them even in travel.

Okay, sorry this post is so long, but it is something that I am passionate about. Make sure your family is protected, you just don't know what will happen and when.

Being Bullied

I was bullied a lot in the 5th grade, to this day I remember the sunny day being tied up with a jump rope and left outside. I remember people picking on me for wearing dresses every day, I remember the miserable feeling of having to go to school, especially that year, but many other days too. I will say that not every day was miserable, I did have some good times in school, but not always. It just became easier to be what people thought or said than be me. I hear people say they would love to go back to the good old days of high school, I couldn't wait to never have to step foot in another classroom.

Unfortunately, it doesn't always stop as you become an adult. Gossip and talking about someone is just another part of bullying adding to that negativity, especially when you know it will get around and back to that person. Be aware of your surroundings, be aware when you are talking about someone in a dressing room, be aware when you are talking about someone and don't believe they, or someone close to them, is in earshot, or at a booth in a restaurant. Be aware of the fact that you are teaching your children that it is okay. Be aware of your words, they are worse than any stick I have ever come across. Be aware of how easy it is to use your fingers via social media, email or text and the lasting effect of those words. Be aware of what is most damaging, what is that? Is when it is someone you love,trust and respected. Once that is shattered, I don't know if you are ever the same.

I found out recently that someone apparently still has stories to tell, even as untrue as they are. Did it bother me? Yes. Is it easier for me to move past it, finally yes.

I learned over the years to stay in the background, to stay silent. Except to myself, the self talk in my head resonated their words. It has taken me years to learn that what the collective "they" have to say isn't true, it doesn't always work. Anyone who has gone through bullying, being put down or talked about by those they love has times when it creeps back to the surface, sometimes it is easy to push out of the way and other times, not so much. It's those times when it takes days, weeks, months of talking to yourself, trying to find your bearings again, trying to become whole again. It's when you dig deep, trust the Lord because he knows your hurts and he knows how to heal. Now, I work hard at making sure others don't give in, say or believe that self talk, especially with the women in my life.

Be uplifting in someone's life, stay positive and remember the old saying if you have nothing nice to say, say nothing at all has never been truer.

Bullies called him Pork Chop - Upworthy

Sunday, September 29, 2013

Be Persistent

Be persistent when it comes to your body. You know when something isn't right and let me be very bold. IT IS NOT NORMAL to feel tired, ache all the time, to not have energy, to have daily headaches for weeks on end, to have indigestion, digestive issues and feel like you keep getting hit by a truck! You deserve to feel better, your kids deserve a better parent, your siblings deserve a better sister/brother, you deserve a better life!

I was not persistent, when I mentioned my ongoing headaches to the OB I was seeing, he said "I don't know what's going on I'm not a neurologist." I felt dumb for even mentioning it, I also never went back to his office again. It was that same month that I had my brain surgery, it was 16 years ago today that I told my sister I had to go, something was very wrong. It was 16 years ago today, that I feared for the life of my child growing up without a mom. It was 16 years ago today that my life forever changed. Don't ignore your body, get the help you need. If you do not know where to turn, call, text, message or email me so I can help you.

I am blessed, I am here, I am healthy and my disabilities are minor compared to others, most people don't know or forget that I even have any. I follow a nutrition program, I do not skimp on our groceries or what we put in our bodies and I can help you.

Saturday, September 21, 2013

I am not mad, angry or bitter -I am overwhelmed, I cannot think straight and there is too much information

As I talked with a couple of people this weekend about how it feels to be a survivor and to have disabilities that aren't prevalent, that people, including family and friends, don't realize or forget that you have them, I realized that I need to continue to share this article.

If you know someone who has recovered from an brain aneurysm or traumatic brain injury please read, please remember and please be there for that person. Please read and try to understand them instead of dismissing them, thinking they are too dramatic, not paying attention or berating them.

If you are someone who is recovering from an aneurysm or traumatic brain injury please know that you are not alone. I went YEARS not understanding, feeling isolated and alone, until I found a group of people going through the same things. It was a great relief to finally know that there were people who actually understood me and would actually take the time to get to know me and how to deal with some of these unseen disabilities.

I read this last year probably and couldn't believe how well someone could capture what goes on inside my own head daily. ALL family members and close friends should read this if they have a loved one with a brain injury, whether it is from an Aneurysm or any other brain injury, it is relevant to us all.

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.