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!

 

Walking Universal

Harry Potter experience,Universal Experience
The entrance to magic!

July 20th 2017, my family set out on our first “real vacation” after the stroke. I was apprehensive. I used to be in control charge of every detail of our vacations, down to packing up the car for the road trip. I dubbed myself the Tetris champion of luggage packing. I was able to cram luggage for 4 people, snacks and “other essentials” in the back of the Impala (may she RIP) and now the CR-V. It is not easy to not be in control charge anymore. The boys are older and they can pack their own luggage– so what if they only pack one pair of undies– and I instructed them on how to arrange the bags in the car trunk. My anxiety was still high. What if I get sick in the car? What I didn’t bring enough meds? What if ? what if? What if I just take a deep breath and just enjoyed myself?

elevators, crowds,
One of four very long & crowded escalators.

Saturday, July 22, 2017, my sister celebrated her birthday at Universal Studios Hollywood. She booked us for the VIP tour and boy it was posh! The day started with a delicious breakfast which we almost missed coz our GPS led us astray.  After inhaling yummy pastries (sorry no pics), we met with our guide. VIP perk #1 we get to jump the line on any ride we choose! Which  was very much appreciated. It was around 1,000 degrees and the park had about a million guests that day! Our first stop was the lower studio. I had forgotten that “lower studio” meant four super crowded, super long escalator rides down.  And we had to keep up with our fast moving tour group.  I love the rides at Universal, I love thrill rides in general. But this time I was apprehensive, I didn’t know how my broken brain will react to the jostling, shaking and speed of the rides. The boys were worried that I will have another stroke if I get on the rougher (fun) rides.  I got on  Jurassic Park since I know it was pretty mild and really wet which was a plus in the hot weather.  

The big dinos were out to say hello!
Jurassic ride, Universal Studios Hollywood
Whew !!! it was wet!
Harry Potter experience
I am pretty sure I was floating

The moment i have been waiting for finally arrived! We were at the Harry Potter Experience! I was so giddy, I swear I would have floated away if Armando wasn’t holding my hand. It.Was.Glorious!!! The snow on the roof tops, the shops and the owls! And of course Moaning Myrtle was in the bathroom being her old, irritable self. It was understandable that my son was nervous about my getting on the The Forbidden Journey ride. Our guide

Hogwarts castle, magic, Harry Potter
Hogwarts:The outside was great, but inside was enchanting!

described it as fast paced, rough and with lots of flashing lights (in my mind: FUN).  The ride was UH-MAY-ZING! I would love to get into detail, but it is something to be experienced.  Yes, I went twice.

I am proud of myself for keeping up with the tour group. I am proud of my mom for keeping up s well. It was definitely fast paced. I am sure the other folks in the group were a tad impatient with us.  My mom braved the Walking Dead attraction. Speaking of, how many people could say “I was bit! I was bit” while exiting the attraction and actually walk the part!

zombies,amc walking dead,scary
The Walking Dead Attraction

I knew that going on vacation will not be the same after the stroke. I will be slower, the kids will worry and for now, I will have limitations. But I am determined that I will not be held back. I was going to rent a wheelchair for the day. I am glad that I decided against it. This was a  challenge I overcame. The heat, the crowds, the noise and the pace of the tour were challenging. We had to keep up with a group of 6 able-bodied people. I more than once considered dropping out of the group, but I am glad I didn’t. We saw places at Universal Studios that are not open to the general public.   At the end of the day, I was wiped. I could not think straight,  my leg refused to move and I felt like i had no control of my body anymore.  I knew that the neurofatigue would be kicking my ass the coming days (and it did).

I am looking forward to more vacations and more adventures.   My disability might slow me down, but it will not limit me. I admit I tire easily, I am slower and it takes longer for me to recover.  I am not ready to stop. If I am too slow for some people,  they can move ahead of me and I will hobble my way to the adventure that awaits me.

Much Love,

Momma Berna

To Have and to Hold

After working a six hour shift slinging McBurgers, my mom and dad came to pick me up from work asking me to  hook them up with a couple of Mcsandwiches. So, I walk back in the restaurant as this tall goofy boy was hanging up a  handwritten sign that said  “.99 hot Fudge Sundays” I stood there trying not to laugh, when the other person who was behind the counter asked me, “do you see anything wrong with this sign?” I was a new employee and to be quite honest fresh off the boat and quite shy and timid (imagine that) I did not want to make anyone angry at me. But being the big nerd that I am I answered, “Other than the bad hand writing? I don’t think we are selling the day of the week”. The tall, goofy guy looked at me, rolled his eyes and flashed a brace filled smile. I got my sandwiches, and as i was walking out Goofy guy asked if I wanted to go out sometime. I was a product of an all girl’s Catholic school and I have never, ever been on a date before. I must’ve stammered something coz he gave me that smile again while he held the door open for me.  A couple of chaperoned dates later (my dad would not let me go out with him unless we were chaperoned), our McRomance blossomed.  That was twenty five plus years ago.

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I can honestly say, we have come a long way from saying “would you like fries with that?”.  Both of us worked our way through school, Armando earned his degree in Political Science from Santa Clara University, where a few years later, I received my Masters Degree in Counseling Psychology. It was fitting that we had our wedding at the beautiful Mission Santa Clara. This past August, we celebrated our 20th wedding anniversary.  The twenty years were spent raising two boys (Vincent-18 and Scotty-15), Armando served as a Milpitas Council member for 12 years while helping the San Jose mayor balance the budget and I have been a case manager and counselor for the homeless, for schools and i’ve also worked as a substitute teacher.

Our marriage is not all about roses and rainbow, there had been storms along the way. But no one could have ever predicted the level F-5 tornado we would be facing in October of 2014.  Armando sat by my bedside night after night while I was in the hospital. During the day, he went home, took care of the boys, then went to work. In the evening he came back. He read to me, told me about the day he and the boys have had. He did this even as I was asleep for long periods of time. img_0974

Armando, the goofy dude who  misspelled “sundae”, has and continues to be the rock that holds me up when I am about to fall.  He has more than upheld his end of the vows we promised each other on August 10, 1996.  I know I sometimes forget to say “thank you” and I know saying “thank you” is not nearly enough.  My emotional survival and physical recovery would not have been possible without him by my side.

Often, the person who is sick or is recovering from an illness gets all of the attention from family and friends. Their caregivers do not get the love and attention that they so well deserve. Armando has given up so much so he can support me. I would not have made the progress I have now if he wasn’t by my side. He has picked up the slack in terms of getting the kids to school, keeping up the housework, taking me to doctors appointments and making delicious meals!  He gets tired, he gets frustrated and yet he continues to be strong not just for me, but for the boys too. 13754414_10153747424648457_2194257211736859590_nimg_373510501670_10207772456373748_2374375607510371088_n

Much Love,

Momma Berna