How Did We Get Here?

March 3, 2020:

“How did we get here?” My mind wandering in disbelief as two men cough near by.

“COVID I will not panic, but you got my attention.”  Then another person sneezes.

My name shows up on the computer screen indicating my meds are ready.  Going to the window the distressed lady shouts out to me,

“Look at the spit all over my window.  We have two Coronavirus patients in the ER and my family just called me and said don’t come home.”

What is home anyway? Is it as safe as you think if you’re not invited any longer?

 

The Hurt

Building on last week’s post, Outsmarting Getting Old, I wanted to thank you for your expressions of concerns and sharing with me your own struggles.  All paths can bring healing.  It is finding the one that works well for our own needs.

Today this little vehicle popped up next to me to my surprise!  What if I would have not seen that thingie and hit it while I was driving. Oh my the hurt, right.

Outsmarting Getting Old

Lately I have been experiencing a bad round of chronic pain that is not well controlled with my regular medications. It is frustrating to live with this. I have been to more doctors lately, but I leave their offices more depressed. Doctors give too many pills as the answer.

I have a goal with all my physical issues and it is to maintain my happiness despite my pain.  One other important aspect for me is to continually look  for current modalities in overcoming my discomfort.  The other option is finding a distraction  to get through the ongoing pain. Perhaps a distraction is being with your partner enjoying each other. This distraction can come from friends too.

The development in some circles in medicine is to ID more precise medicine treatments. This can be done by studying one’s individual genetics. This tool is the future. What do some of you think? I believe potential breakthroughs are around the corner.   Now that puts a smile on my face.

Memory Loss

It’s inevitable . Don’t count yourself out. No one wins in this battle. 

She called me and voiced her concern. I said, “what’s the matter?”

“He asked me again how old I am.” Repeat.  Rewind.  Move forward.  It was the advice I gave. 

“Keep drinking your nightly glass of wine too!” That advice she liked. A lot . 

Memory issues are ever present in my own devised, messy life. As a brain tumor survivor,  I decided to do life as my will determines it to be. That can be complicated as well as simple. Never boring. 

Then there is my autistic son . He has real issues remembering everyday life sequences. I try to make life fun for him. It really helps. 

The problem I see with care takers is the isolation brought on by the inability to be out in society as much. My idea is we all need to help each other.  Forgiving those that are losing their memory also is probably not what a care provider or family member wants to hear, but it’s the only way one can be. 

For example, Caring for my son was days without sleep turning into countless years with sleep deprivation. My son turns 24 next week, 22 years I was the main provider. I had several helpers throughout the years and his dad was awesome, but most weighed heavy on my shoulders. 

Routine also needs to be kept constant. I did not realize it until my son was born. I am mostly a spontaneous person and do not care for everything being the same day in and day out.  Spontaneity was needed because my RN job caused me to have to document everything very closely by the clock. I sure did not want to do that with my personal life! 

Written in memory of those who lost their battle with dementia. 

Spinning Out Of Control

I promise you this post will make you laugh and be smarter than a 5th grader. I promise!!!!!

The blinds on the doors can be closed to give one a sense of privacy and eliminate  a lot of the noise. 

I was out of control in my mind listening to my urologist state matter of factly, “You need surgery.” Yeah. Right. ( note to readers- read italicized captions under pics after you read the post ) .

Ticking Time Bomb

I just got out of the hospital.  I am learning not to advertise much of my life on social media, but we all still need to reach out for help.  If any one knows me very good, they know I love watches.  Here is a bit of my collection.  I love swatches the most, but there is a Gucci in there somewhere.

Autism And Its Challenges

Luke’s autism is a story I have chronicled so you could see the challenges we face. This disorder comes with a big price and it takes much determination to succeed. Along with Luke’s disability, he has significant cognitive delay. His mental age in my opinion (his mom) is about four years old. The question by some may be, “How does one live like this?” The answer is, “It depends.” For example, many people have their own commentary of quality of life. We all have “our truths” about that subject. So do we impose our idea of quality of life on the one that is actually suffering, yet he does not even know it? My perspective is pretty simple. Life matters. No matter at what stage or age you are in. Life matters. Why are others quick to pull away from their responsibilities? See what you think of my example below as I describe a week in the life of a mom and her son trying to find medical help. Sorry medical professionals–you seem to get picked on by me a lot.
We have had quite a week dealing with Luke’s need for dental surgery. I spent undo precious time trying to find a doctor willing to do the surgery for Luke without giving him General Anesthesia. Finally I found an oral surgeon willing to take the chance to do the procedure in his surgical suite under IV sedation. I am very grateful that Luke was taken care of there and the surgery was a success ( no general needed!).
The post op journey has not been easy though, but I believe we may have made it through the worst of it. We make a third trip to the dental surgeon this week, and I hope that will be it except for routine cleanings! I think Luke would agree. I wonder how many people could go through the agony of hearing from one doctor’s office after another not willing to care for Luke.
I say Luke will endure and maybe Mom will too! I am glad sometimes he does not understand the discrimination he gets. So many are still ignorant that Luke is human and made physically just like them. Anyway, this is just one example of how autism impacts families and brings undo burdens that should not be there.
There are dentists who actually say: ” I don’t take care of that kind of medical issue (even though they do) because there are “others” who will. I wonder which dentists are the “others?” For now our other was Dr. Sorenson. He was great as well as his competent staff and front office. In the photo –you will see Luke is still smiling!!! He always will.

Becoming A Nurse

Today’s post is a letter I received from one of my aunts when she became a nurse. I wanted to share it in honor of her 86 birthday coming up very soon! As a nurse myself, I felt it was inspiring. I hope you do too. I have two retired aunts that were nurses in my family and including my career in nursing we have over 100 years between us of taking care of the public in their time of need:

The year was 1964. I am a high school graduate-the mother of five children ages one to seventeen. I am thirty-eight years old and we live in a farming community. My husband’s income is minimum wage. I am a good manager, but I can no longer make one small paycheck meet the needs of our growing family.

My inspiration is to find a job that will enable me to help meet those needs. I’d never in my life had any desire to be a nurse. My experiences with nurses was very limited and I liked it that way! I’d admire them from afar-and the farther the better.

In spring of 1964, a notice in the local newspaper said a nurses’ assistant class would be taught at the local hospital. It would last six weeks and those accepted in the program would receive seven dollars per day and a certificate of completion of the course of learning. I applied and was accepted.

I was on my way. I had two dollars each day for the babysitter, gas for the car, lunch, and one uniform that was starched and ironed everyday! I would describe myself as hopeful, prayerful, and squeamish, but determined.

Then I met my first Florence Nightingale. She was Ms. Anderson, RN from Hopkins County, KY. She told us what. She showed us how. She told us why. She then watched until she knew we understood. She was the first of many I’d meet in the years to come.

My first job was as a surgical technician and emergency room nurse with on the job training and vocational classes at night. I graduated from that vocational school. I worked my first nursing job for 19 years in the hospital. I then worked in a nursing home for five years. I returned to the hospital part time for five more years. I retired at the age of 67 with a nursing career spanning 29 years. The hard work and opportunities I never expected to have with experiences that inspired far beyond my imagination and memories I have now to look back on. Memories that remind me of hopes that are fulfilled and prayers that are answered. I am thankful.

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.