Stupid Blog Writing

I am driven to write. There is no exception even when unhappy with my words. I can not compare myself to those that have editors or proofreader’s to read their work before it is published.  I even hate freshly pressed endorsed by this platform.

Why do I write these days?  I received that lone comment that gives me pause.  Hearing from a woman dealing with two rare brain tumors brought tears to my eyes.  She seems to have a strong will and a determination in her spirit. If you are reading this, I am glad you decided to follow me.

Monkey On My Back

Stent running from my kidney all the way to you know where! Ugh

Brain injury awareness month was the last thing on my mind ( no pun intended) as I scoped through my home last week looking for an important document. I was getting mad at myself.
Many of my rooms are partially empty. There are a few reasons for this. Without blaming my autistic son too much, I am convinced he has wanted me to redo rooms for quite sometime. ( He breaks things. I guess we all need hobbies. This one is very expensive ).

Waiting on my Urologist! What Joy!

I have had a brain tumor and some form of TBI ( traumatic brain injury) and like my surroundings well controlled. My inability to find that document drove me crazy. I finally called someone who assisted me! Thank God.

Without boring my readers, I was working through authorizations , etc with my health needs. This alone can drive anyone nuts. 
Surgery again tomorrow and another overnight stay is enough to think about, but my mind has trouble staying focused at times. I do not care if I am labeled with a monkey on my back. Maybe the monkey gets the attention for a cause that may be way worse in others than my case. 

God Follower

Greatest Mom Ever (ask my sons)

Kidney Cancer Survivor

Brain Tumor Survivor

RN

Truth seeker 

Family friendly

Friend friendly

Monkey lover

Blooming

Forward thinking health is my story. Blooming at just the right timing  can depend on many factors…. My truth is no other. Walk in my shoes just one time and you will see.

“Move your foot forward. You can do this.”

The therapist evidently knew more than me..

This was in January of  2011.  My hospital physical therapist had begun working with me in the acute rehab. I was status post one week crainiotomy for a large motor cortex brain tumor.

“It will not move.” I remarked

“Yes. It will. We will get you there.”

I looked up at her admiring her being strong for me.

That almost seems a lifetime ago, yet everyday I am reminded one way or another of my past medical history.

Today that blooming effect keeps rolling along five years later. This past few months , I started working closely with physical therapy for a  left knee injury. While being assessed, it became apparent to the therapist I also had another condition called Left Neglect.

I was absolutely shocked with this. Apparently damage to the opposite side of my brain ( in my case right side of brain) caused my left sided neglect.  Surprising enough, a left-sided neglect individual may not even know anything is wrong. I sure did not.

Damage to the right side of the brain also may cause cognition issues such as  attention. This is where we need to understand paying attention involves complicated neuro circuits being fractured.

I did not realize this neglect and if I did , I would have taken steps way before now to retrain my brain to use my body in equal footing.

As a mother, I wondered how all these complicating issues were going on in my body all the while doing my mom job.  This whole issue is not just one area or disorder, but multiple in nature.  I am thankful to my sons for always accepting mom through so much.

Barriers happen. These blockades will be overcome by an attitute of continual blooming. As I look out into my backyard, I see this in action. Flowers almost blooming or already have, yet I also see precious squirrels looking to get food and jump at the chance when he can.

It all may sound crazy, but this left neglect is a real neurological condition. In  fact, I had to keep a key viewpoint alive in my head that my issues are real. I do not have but one energizing answer to my rehab. It is simple. Keep blooming. Keep smiling. And yes. Keep moving!

Brain Trippin’

Luke during a research study of his brain.

Did you know the bigger your head is the smarter you are? Perhaps you have heard that the more bumps you have on your skull means your IQ is flying off the charts? These were the ridiculous questions once pondered by those who studied the science of the brain. We have come so far is really an understatement. In fact it is clear our century is bringing new brain research to a whole new level.
This research does not come cheap. There are many places we can donate our money including Michael J. Fox’s Foundation or the Autism Society of America. As a brain tumor survivor and a mother of a son with autism, I am keenly aware of the essential need to cure brain diseases . It has been noted recently that one out of every six people is affected by brain disorders. The diseases of the brain touch us all which can include Parkinson’s, Alzheimer’s, Addiction and Strokes.
What would a cure mean for me? It would mean the world! I know one man in my neck of the woods who has done a tremendous amount of research on the brain. His is Paul Allen. I would highly recommend you checking out his site: http://www.alleninstitute.org/ .
I know many of us do not have the money to send off for research, but have you ever thought about donating your time or even yourself to be researched? I wanted to highlight this because if you are one of those affected by any of these medical problems, I would encourage you to participate in any research study you can. Our family has made it a practice to be involved with the research community in hope for a cure. We have done this as a family and it has been extremely gratifying. Our son Luke has been in at least 10 studies. I almost think I could call him a professional at it.
The mystery of the brain is amazing, but as I studied the brain’s general functions when I developed a large brain tumor-it made me aware of why I was having the problems I had encountered over a period of years before my tumor was diagnosed. My tumor was so large that it shifted the contents of my brain to one side. It sat on top of the motor cortex specifically the movement area of my brain that squeezed the vision, behavior, hearing and coordination centers. Here is a fascinating photo I give credit to TIME magazine that gives you a layman’s look at what part of the brain does what:

Central Pain Syndrome

This photo was taken not long after my first brain tumor surgery.

Having a brain tumor was the last thing on my mind (no pun intended) as I dealt with many symptoms leading up to that diagnosis. Apparently it was for the doctors too as they never entertained the thought even after carefully describing my symptoms 3 years earlier than my diagnosis. At least the initial doctor confessed he had “missed” it. I hold no animosity as a doctor that can be apologetic is better than the one who is an ass hole. You all know the type if you have had much medical treatment.
Over two years have gone by since my brain tumor was removed. In fact it is time for my annual MRI soon. I will keep you posted on the results. One of my most lasting and chronic problems I seem to present with these days is called central pain syndrome. It is one of several issues I have going on, but this one is tricky. Treatment for this is difficult. In fact the treatment can be worse than the pain. There is no cure. I hope to share more with you all as I can. I have some tough days and my focus is limited when I do not feel good. I take each moment and am thankful when I am not hurting.
I wanted to share with my readers a very important thing about the brain. Our brain is a vascular organ. If you can imagine your brain as a river with many creeks running through with purposeful directions than you have an idea how important all the blood vessels are in our head. No one knows for sure the cause and effect of certain disease processes that coexist and what may have to happen first for another disorder to occur. Much of medicine is a discovery just waiting to happen. When I had my brain tumor removed, I had a procedure called an embolectomy first than my crainiotomy the next day. It was soon after the embolectomy and being sent to the ICU that I had symptoms like a stroke patient. All the doctors like to deny that the cause of the stroke may have happened on their dime. No one knows for sure, but being a relatively young person ( ok I was in my 40’s when this happened) the most common cause of strokes is disease of the arteries in the brain. We all have heard of problems too that all of us can try to tame. One last thing readers, please work hard on those things you can change with a good doctor helping you: high blood pressure, high cholesterol, and physical inactivity.