To know Me is to Understand Me

I am sure you are all familiar with “knowledge is power”.  It is a well-worn adage thrown around as part of valedictorian speeches & candidate statements during campaign season.  Commuters have been enlightened by the phrase through bumper stickers for ages.

We expect professionals to be knowledgeable in their fields. Heck we expect them to be downright geniuses at their chosen profession. This is especially true for our medical providers.

Thankfully, most of the medical professionals I have met are very knowledgeable.  They have a very good grasp of issues related to strokes & their treatment.

Knowledge is gained through education & experience. Keeping up to date with the latest information, research & constant study helps expand knowledge in their chosen field.

But just because doctors know what they are treating, does that mean they understand their patients?  

Knowing how medications work, how our bodies are supposed to work and how those meds affect our body, are great qualifications, but for me it isn’t enough. 

As knowledgeable as my doctors and therapists are, I certainly would be appreciative if they also understand me as a person. Understanding is acquired on a deeper, psychological and personal level. I would like to be treated beyond being just a  diagnosis and medical record number.  I want this because if someone understands who I am and what my goals are, we could together forge clearer path to reaching that goal.

I met with a new physical therapist recently. As we enter her office, before I even sat down her first words to me were “You know, it has been 3 years, you should not expect too much progress right?” I slowly sat down, took a deep breath and worked on not crying my eyes out. I told her “ I will run again”. To which she replied “you could always try the paralympics”.  Her words hurt and hit me hard.  Not that paralympics  is a bad thing, but up until that moment the thought of being a paralympian has never crossed my mind. I was and is still convinced that I will regain my “normal” running legs. I wish she had taken the time to speak to me first, get to know who I am and talk to me about my goals before she abruptly told me about the paralympics. It would also have appreciated a little more information about the paralympics before she sprung it on me. 

The psychologist  I saw pretty much said the same thing. She gave me the “you’ve plateaued” speech.  I made an appointment with this psychologist because I wanted to talk about my frustrations and anxieties about my recovery. The first thing I told her was “I don’t want anymore meds.” She went through her list of questions, I opened up a bit. Then she says “I’m going to set up an appointment with one of our psychiatrist, he can talk to you about maybe adding more medications or increasing your dose. I met with her wanting to have someone i could objectively speak to  regarding my fears, anxieties & frustrations about my recovery.  I did not want  someone who will medicate me to numbness.  She continued to insist on medications. I did not make a return appointment.

Hospital staff & medical professionals are short on time. They are under pressure to get patients in & out of the clinic in order to serve more people.  But taking a few minutes to ask questions, looking beyond a medical record would mean so much to the patient who you will see on a regular basis. Be a person we can trust to not judge our deficiencies and dismiss our goals. Be one who is willing to help us reach those goals. If the goals are unrealistic, please meet us in the middle and help us to get there. Stroke survivors fight daily to overcome our deficits. Although, we have support from our family and friends It really helps to have our medical professionals understand us so that all of our bases are covered.  Healing and recovery goes on much smoothly if we are well supported.

What would you want your doctors or therapists to understand about you?

Do you feel that you are able to talk to your medical team and express your needs & goals?

P.S I have been seeing the same PT, we’ve had a couple of sessions since that fateful first meeting. I believe I have shown her what I am capable of achieving. Her & I are now working hard to get me back to running!

 

The Stroke Survivors Club

I belong to a stroke survivor support group. Recently, one of the members welcomed someone new with words along the lines of; “Welcome to the club, the membership fee to enter is hefty, but you will be surrounded by a great group of people.”  What stuck with me were the words “the membership fee is hefty”.  It has never crossed my mind that I now belong to the Stroke Survivors Club. I do not remember filling out an application. It is not a club that anyone would willingly want to belong. And yet, here I am.  And yes, I paid a high price for my membership.  And unfortunately, there are no refunds.

Club membership includes my family.  They were recruited and have been drafted to be my helpers. I’m quite sure it wasn’t what they were expecting to be doing at this point of their lives.

family, strong family, stroke support,
Nothing beats the support of family.

The Stroke Survivors Club does not discriminate. All ages, races and status are welcome.  And your recovery will be made better with the support of family and friends.

There are some perks. There’s the premier parking spot which comes in handy specially around the holidays 🙂   Kidding aside, this club will help you find out how strong you really are. The challenges you will encounter is not for the faint hearted.  survivor strength, survivor strongNo one asked to be in this club.  Membership is for life. But you will learn about yourself, you will learn about who you can trust and who you can rely on. You will learn to fight. And fight hard you will. You will fight professionals telling you that you have reached the end of your recovery, you will fight against yourself when a little voice inside you tells you it’s time to give up. You will fight negativity from people around you.

The Stroke Survivors Club is comprised of warriors. We are warriors who have faced great challenges and have found a way to surmount them.  And we keep on fighting.

Much love,

MommaBerna 

My Broken Brain

 

What I had was a hemorrhagic stroke. A vein in my brain burst  which caused blood to leak . The blood then caused parts of my brain to be deprived of oxygen causing permanent damage.  I was told that my brain became so swollen that it had shifted from it’s original position. I did not know this at the time, but the doctors told Armando that if the swelling did not go down, they might have to open up my head (craniotomy) to relieve the pressure. They also told him, i might not survive that surgery.  Thankfully, that did not happen.  But I was still left with a broken brain. I have both physical and cognitive  damage from the stroke.

The brain fog is really tough to deal with. Imagine waking up one day and all the colors and sounds around you have taken a very dull edge.  If you are near sighted, please remove your glasses.  I know that you are now struggling with seeing things that are far away. You might be able to recognize objects, people or colors but you really have to strain or squint to know who or what they are.  Now put your glasses back on, everything is crisp and clear again! If you have perfect vision, well… We don’t like you.HA! Just kidding!!!  This blurry, dull version of the world is my new reality.  My brain now has a difficult time processing more than one sensory input at a time. If I am reading or watching something and someone starts talking to me, I would have to turn off the television or put down the Kindle for me to be able to understand what the other person is telling me. Sounds can either be too loud or too soft, my voice will sometimes be too loud or too soft.

The stroke also threw my emotions off balance. My emotional filter is gone.  I feel so bad for my family as anything they say or do could send me into a crying jag or a fit of anger. It was also hard for me to feel joy. That was devastating. There were so many things that I should have been happy for but I could not feel that light, joyful feeling in my heart. I often wonder, did the stroke damage my “happy” center?

I still have trouble using my left arm and hand. It is the same with my leg. There is a miscommunication between my brain and my muscles. I describe it this way “my brain speaks English, while my left side all of a sudden spoke Mandarin.” They could not understand each other. My physical therapist told me I should trademark that phrase. It is a simple but effective way to describe the damage that I have on the left side of my body (hemipharesis).

I work very hard to get back all that I can physically and mentally. I know I am making progress. For now, these are the things that I really struggle with:

  1. I have a short attention span.  If I am talking and I get interrupted, there is a chance that I will not be able to continue or remember what I am talking about.
  2.  I sometimes know what I want to say, but cannot immediately find the words.
  3. I may ask you for the same information more than once. My short term memory is finicky at best.  On the plus side, I am an excellent secret keeper.
  4.  I still get tired very easily. What’s a simple task for most people takes more energy for me.  Not only physically, but also mentally. I cannot walk and talk at the same time.  I will either trip, or lose track of our conversation.
  5. Loud noises and crowded places zaps my energy. This is getting better. I am thankful for that.
  6. My emotions are a mess. I get easily hurt by things that should not matter. I am getting better at this, I do not like that I had my family was walking on eggshells around me.
  7. Chronic nerve pain (neuropathy) is a constant struggle. I could be walking along all fine and dandy then the next minute BOOM, my foot would feel like it is being stabbed by a million hot, sharp pins and needles. My shoulder and thigh  are also affected by this pain,

On October 28th, it will be two years since I’ve had a stroke.  I believe I have made some incredible recoveries. However, I still have a very long way to go. So I keep on working, I keep on researching for new ways to improve,  new treatments available, and of course good old fashioned hard work. At the same time, I will live my life fully and love whole heartedly.

 

Much Love,

Momma Berna