In Memoriam

Stroke has taken so much from my family. Our lives changed drastically after my stroke in 2014. Things were finally smoothing out for us, until March 12, 2018 when a  stroke took away my mom.

My mom’s death was unexpected. She was fine that Saturday March 11th. We sat around the table with my sister eating yummy pastries. She talked about going to Florida to visit her sisters (A and I had already planned on buying her the airfare as a  birthday present). My boys and I had gone to a birthday party that evening and when we came home, my mom was telling us how Twinkie kept her company by sitting outside her bedroom door(what she didn’t know was that she was the one making the dog feel safe. Twinkie does not like being alone). As she was getting ready for bed, she reminded me of the time change the next day. She said good night. I said “thank you and I love you”. I don’t often tell her “I love you”, but I am glad that I did that night. She went to bed with a smile on her face.

The next day, everyone had a slow start. We ate breakfast around 11, it wasn’t unusual for my mom not to join us for Sunday breakfast as she watches/attends the Catholic mass on T.V. My husband and I were getting ready to go to the gym when we heard my mom coughing. Her coughing just sounded wrong, it sounded as if she was drowning. We asked Scotty to check on her. He was calling out “Wowa,Wowa” (the kids’ name for their grandma) and he sounded panicked so I rushed over to her room. The second I looked at her I knew she’s had a stroke. She had all the signs. Armando called 911. She wasn’t swallowing her spit, so Scotty propped her up on her side so she does not get water in her lungs.

At the hospital, the CT confirmed the stroke. She was placed in the ICU, we were hanging out with her and relatives visited.  My mom was awake and knew where she was, what day it was and recognized the people who visited her.  Doctors performed all kinds of tests. We were told she had an ischemic stroke and she was experiencing atrial fibrillation.  They were going to keep her in the ICU for observation, but they were cautiously optimistic. That 5 A.M. phone call was a shock that  still reverberates through my bones.

My mom lived with my family, so her absence is deeply felt.  On one of the days leading up to her funeral, I knocked on her bedroom door before I entered. I was going in there to get the clothes she would be buried in.

On the night of the rosary and vigil, we delivered our eulogies. I kept mine short because I know I would not have been able to keep it together. Here is the eulogy in its entirety.

Before I begin, I would like to thank everyone who came here tonight. Thank you for your support and for honoring my mom’s memory. I hope you’ve all had a chance to share stories and good memories.

Many if not most of you know of my mom’s generosity. She would give and share until she had little or non left for herself. Her favorite thing to share is her cooking. She would cook enough to feed the neighbors and she did! She cooked for her boys, she knew their favorites and would make it for them if they asked or even if they didn’t.

My mom was also very stubborn. I had asked her to stop doing her apos (grandsons) laundry, but she still did. She also cleaned up after them. It was part of her morning routine to turn off the bathroom lights and the light in Scotty’s room. She would also go in the boys’ room to make their beds, collect any cups or dishes (the boys are not allowed to eat in their rooms, so I think she did this sweep so I won’t yell at the boys.) She also did their chores and gave them money. I guess it is a grandma’s well earned right to spoil their grandchildren. She fed the cat. A lot. She also loved to buy Filipino pastries. I’ve asked her over and over to stop as it is unhealthy. She bought them anyway and we happily ate.

The one quality my mother had that I never appreciated was her strength.  In contemplating her life, I now only realized the sacrifices she’s made for my sister and I. In 1989, she gave up her career as a dentist to immigrate to the U.S. Her and my dad gave up the comforts of their lives, friends and jobs so that my sister and I could have a better future. The help of generous relatives helped relieve some of the uncertainty we were facing. My mom secured a job at a semiconductor company where she worked from 6 PM till 6 AM. This job allowed us to move out of my aunt’s house and rent an apartment in Milpitas. My sister and I were both going to school and working, but not once did she ask for our financial help. She even gave me the money for a downpayment for my first car. She never learned how to drive, so when my dad passed in 1996 she not only lost a husband, a best friend and a partner. She also lost her chauffeur. I was starting my own family, so I was not available to drive her around too much. She had to learn how to take the bus. She had just taken the bus to a doctor’s appointment the Friday before she passed. She was giving me lessons on bus routes!

Her true strength came through when I needed her the most.  After I had a stroke in 2014, my mother was instrumental in my recovery. I am sure that she never, ever thought that she would have to help her grown daughter use the bathroom. Or that she would have to help me clean up because I did not make it to the bathroom in time. She bathed me as I cried out of humiliation and self-pity. She had to cut up my food, help me get dressed and remind me to exercise. I know it took an incredible amount of strength for her to keep it together as she helped me build myself back up. I will never forget the look of pride she had as she watched me take my first steps. Even as I am fairly recovered, she still hovered over me. She was always hesitant leaving me alone. She would ask what time one of the boys will be home before she leaves the house. She stayed up with me when I was up till late watching T.V or writing. She calls to check up on me when I am out walking alone or when she’s out of the house and no one is home with me. My mommy protected us fiercely. Loved us wholeheartedly. Gave generously.  Her life maybe gone, but her presence will always be with us.”

goodby grandma,goodbye mom
My boys helped carry their Wowa (grandma) to her final resting place.

It has been a difficult couple of months and I am sure it will not get easier anytime soon.

Much Love,

Momma Berna

 

 

Aftershocks

Earthquakes happen suddenly, with no warning and if strong enough, leaves massive destruction at its wake. Then the aftershocks follow. Little tremblers that are just as nerve wracking as they could be signaling another big one.

I use this analogy because this is how I felt after the stroke. I get anxious whenever I get a headache or a tingling in my hands or feet. Afterall, the stroke literally caused a shift in my brain.

Post Traumatic Stress Disorder  (PTSD) has always been attributed to veteran soldiers returning from the harrowing experiences of war, survivors of tragedies such as accidents, personal assaults and natural disasters. What most don’t realize is that there are stroke survivors who also suffer from PTSD.

PTSD is a psychological disorder characterized by depression, anxiety, flashbacks and/or nightmares.  This study indicated that 1 in 4 stroke survivors suffer from PTSD and yet, it is not a well researched field. Stroke survivors often have huge physical recoveries to tackle, their emotional health is often put on the back burner.

When I was discharged from the rehab hospital, my family was given resources to help me recover physically. Appointments and referrals were set up for physical, speech and occupational therapy. Medical pros had to check my home to see if it was accessible to me. My family was even “trained” to help me transfer in and out of my wheelchair. They were given information on how to keep me physically safe. I  do not recall if my family was ever warned of the psychological toll specially PTSD.

FAST, stroke survivor, stroke, stroke prevention
Act FAST for stroke treatment

The stroke was caused by a blood vessel that burst which flooded my brain with blood killing precious brain cells. This according to the pros, was a direct result of high blood pressure. Armando and I became vigilant about checking my blood pressure.  If it was a bit high, I start panicking- which resulted in my pressure going higher. It was an ugly cycle. Every headache was surely a sign of another stroke. I would do the FAST (face, arm, speech, time to call 911) evaluation, but would be very upset because I cannot move my left arm, the left side of my face was numb and so was my leg. It was aggravating. I took a couple of ambulance rides to the ER only to be sent home embarrassed and upset. And inadvertently scaring my boys.

I read somewhere that lifting weights could cause strokes. I immediately emailed my neurologist, my primary care physician and  my physical therapist my concern. I was working with a trainer and weight training. They all told me to chill the fuck out (okay, in a very medically polite way) Mind you, I wasn’t lifting anything over 10 lbs. I could not even hold a 5 lb dumbell with my left hand. Ha!

After three years, I have managed to calm down. I still fear that a headache (which I don’t get often thank God!) is signaling another stroke.  I have a nagging fear that I will have another stroke and that one will leave me in a vegetative state. These little aftershocks haunt me in my dreams too. I relive the moment I had the stroke and I wake up screaming. Will I ever be able to NOT think about another stroke? I doubt it.  This is a reality I now live with.

However, I will not allow these aftershocks to stop me in my tracks. I take many precautions so that a stroke will not get me again. I eat healthy, exercise and avoid stress (yeah, that one is not happening).

For anyone reading who is a stroke survivor, please know that the fear of having “another one “ is not irrational. The anxiety is very real. Our fear is valid. Know that you are not alone.

Much Love, 

Momma Berna

Left Frustrated

The moment I was able to flip the bird with my left hand again felt like victory and awesomeness.

When my brain broke, I Iost the use of my left side. The technical term is hemiplegia. It is often referred as one sided paralysis.  My left arm, shoulder and hands clung to my side tightly. It was painful to even try to move. My fingers were in a closed tight fist so thst my nails were cutting into my palm. Spasticity keeps my fingers stuck together as if they are bound by a thick rubber band. 

It is incredibly frustrating that very simple things are so very difficult to do. Getting dressed, eating and even holding a book became impossible (thank goodness for Kindle). I had to learn a new way of dressing myself, how to put on a bra – ladies, it wasn’t easy nor was it pretty. Getting tangled in my own bra was quite interesting. 

At first, I was embarrassed to ask my boys or my husband to cut  up my food. I would have gone hungry.  I’ve learned to order food that does not require any cutting when I am out with friends, I did not want to ask them to slice up my dinner for me. Eating a sandwich is still tricky and messy. 

I am right handed so I thought that not having the use of my left would not be a big deal. Wrong!  I took for granted how seamlessly my shoulders, arms and hands worked together. I live the metaphor “with one hand tied behind my back”.

Three years post stroke, I still have a long way to go for my left hand to be fully functional. I do a lot of stretching, weight bearing and fine motor skills training (picking up small and large objects etc.).

Looking back, I have made major improvements:

  1. I am able to tie my own shoes again! Youtube has multiple videos of one handed shoe lace tying, but they are more complicated than I preferred. I had elastic, no tie laces which were very helpful, but I wanted to tie my laces on my own. Who knew that at my age (don’t ask), I would celebrate being able to tie my own shoe laces!
  2. I could now keep my fingers open. This is great because: I am not hurting my own hand anymore, I could cut my own nails without someone else prying  my hand open. I could get manicures! I could even cut my right fingernails with my left hand. With some modifications.
  3. “It puts the lotion on it’s skin” that’s with my left hand on my right arm.
  4. I am now able to use a can opener. The manual one. I won’t starve anymore. YAY!!!
  5. I could open a bottle of wine! (this should be number one on this list).
  6. I could turn the door knob with my left hand.
  7. I am now able to lift my arm up to my ear and hold it there for a few seconds without assistance.
  8. I could fold laundry (sshhh, let’s keep that on the d.l).
gym hair, pony, left hemiplagia,stroke survivor hair, pony, long hair,
Gym pony by the hubby. He’s good,right?

There are many things that are done day to day that for most of my life I have taken for granted . Just combing and putting my hair in a ponytail takes the coordinating action of my shoulder, upper arm, lower arm, hand and freely moving fingers.  My husband has gotten really good at putting my hair up. He still needs to learn the fine art of French braiding, I also need to get my boys trained at this skill. I am happy to say that both of them have learned how to help me with my jewelry. 

  I am still wary around knives. Cutting veggies is scary when at any time my left fingers could slip right under the blades of a sharp knife.  

Typing is literally a pain.  Typing with one hand is slow and tedious. Typing with one hand and having a crappy short term memory is very, very frustrsting.  I am using this program to improve  my typing skills, right now I am up to 10 words a minute! WOOHOO!!!  I looked into speech to text software, but the price tag left me…umm…speechless.  

I have been stuck with the idea that using adaptive equipment means I am giving up. Lately, I am realizing things would be less frustrating if I adapt rather than struggle. I would be more self reliant if I use things that could aid me, rather than getting frustrated because it’s “too hard” do things. This  one handed chopping board  is an example.

My accomplishments are small, yet they are the steps that I build on. Eventually, my brain synapses will fire up again and make new connections. It is a long, frustrating road. Imagine traffic on the Interstate during rush hour. Or for my Bay Area readers hwy 880 anytime of the day (emirite??)

 

splint, hand splint, stroke survivor, occupational therapy
My super sexy night hand split. It is to train my fingers to stay straight.

 I  continue to hone my gross and fine motor skills.  My arm and hand moves like an amusement park claw machine. Slow, unreliable and drops things when you think you’re about to get the prize.

 

Much Love,

Momma Berna

 

Low Heels, High Expectations

I love shoes. I would switch between sexy heels and sweaty running shoes.  Nowadays, I live in Tom’s canvas shoes and since it’s winter, I get to wear boots with the fur (enjoy that earworm. You’re welcome 🙂 )

My husband and I were invited to a birthday party. I wanted to get all dressed up. I ordered myself a form fitting dress and feeling brave, I picked up a pair of not so high heeled sandals. I practiced walking around the house and I did fairly well. I was able to keep my balance and my left foot felt strong.

The day of the party came. I got my hair and face done, squeezed myself into my dress and strapped on my shoes. As an afterthought, I had my husband bring a pair of my trusty canvas shoes.

We got lucky and found a parking spot about a block away from the restaurant and club where the party was happening. By lucky, I mean we had to drive around downtown for an hour where every parking structure and over priced lots were full.

 Walking on the sidewalk  is a whole different ball game than walking around the house. I was very, very wobbly.  I was grabbing on to my husband’s arm as if my life depended on it. It did. I was trying to walk gracefully, but it was not happening.

As we walked in the restaurant, a few people were staring. Looking at my feet, looking at me and shaking their heads. Since I really do not have any visible damage from the stroke, wobbling the way I did and having a death grip on my husband made it seem like I was drunk. I knew people were looking and judging. I kept walking knowing I have good friends, good food and good champagne waiting.

I headed to the bathroom after dinner, my foot at this point was done.  Walking really poorly, I managed to roll my ankle and I heard a slight pop. Panic set in and I was leaning on my husband not wanting to put weight on my foot. That was when two young women walked out of the bathroom.  They stared, whispered and giggled. I was visibly upset thinking that I had sprained/broken my ankle. Armando led me to one of the chairs in the lobby and the two young women were standing by the elevator still giggling, phones out. I’ve had enough. I told them loudly “I am not drunk” (which on hindsight made me sound like a real drunk).  I was about to tear them a new one, but my husband stepped in and diffused the situation. I was in pain and I was scared that I had broken my already weak ankle that I have been working so hard to get stronger. I was upset that there are people who would laugh at another’s suffering.

What happened to kindness, empathy or sympathy? Was I expecting too much? I was obviously in pain and was distraught and the young ladies quite possibly were sharing my situation on their social media. When have people become desensitized to another’s pain that instead of offering comfort, they offer social media fodder. The amount of “likes” and responses validates the poor behavior. I got over the judging looks and whispered remarks, heck I know I looked drunk and wobbly. What bothered me is that there are people out there who callously would laugh about someone else’s pain. Finding validation for bad behavior will only encourage those young ladies to find their next “victim”.  There were many opportunities for someone to show kindness that evening.  A kind word or a sympathetic smile would have been sufficient.  

laughter, expectations, party
Still Standing

Thankful that I brought my reliable Tom’s and my foot was not broken, I was still able to hobble and I still looked hot (or a hot mess)  at the party. It was AH-MAY-ZING!!! The music was heavily 90’s and the dancing was fun. Drinks were flowing and the company great. Lots of laughs and shenanigans ensued. One of the advantages of having a crappy short term memory is that I temporarily forgot about the ugliness at the restaurant and I enjoyed the party!  My husband and I had a much needed night out. 

Hope the New Year brings you joy, love and kindness!

Much Love, 

Momma Berna

high expectations, low heel,
The Aftermath
Bad Shoes
The evil heel!

Thank You and Thankful for You

Thanksgiving week is over, I hope that everyone enjoyed platefuls of turkey and stuffing followed by a tryptophan induced nap and have survived the annual mass hysteria known as Black Friday.  In the spirit of gratitude, I’d like  to give a

online shopping, friday, gratitude
How I Black Friday.

big shout out and a big thank you to the people who support, help and encourage stroke survivors and other survivors to lead more productive, healthy and thriving lives.

I am fortunate to be surrounded by amazing family who are also my caregivers: My husband, My children, my sister And my mom. My mother and sister-in-law also give tremendous help and support.

Caregivers give so much, it seems impossible to tell them how much they are appreciated. Material things will not be enough to express our thanks. I know this list is short, I have wracked my brain for answers and I cannot seem to come up with something that would be able to truly express my gratitude.

The Turkey Trot has become a family tradition. The family that wobbles together… The boys run, the husband & I wobble.
    1. Say what you mean. Our caregivers are not mind readers, we sometimes feel that they “should” know what is it that we want or need. Try not to say things like “it would be nice if I had a warm blanket” or “ Is there anyone here who could get me some water?”. It might be hard to ask, specially for the simple things we used to be able to do. But being direct, but polite eliminates a lot of misunderstanding and resentment.

2. Give them space. The first year after the stroke specially the first six months, I was worried about being left alone. I also did not like going outside. My family was held “hostage” by my fear. Armando, my husband was still working full time, so he would put in 9 hour work days, then come home and take over for my mom to care for me.  The boys were busy with school, so they help out when they can. Armando was essentially “on” 24/7.  He needed a break. I managed to kick him out of the house to hang with friends before he burned out. Since then we have learned that having some time for ourselves is essential for our sanity. He now works from home, so getting some alone time is even more important. The people who take care of us, must also take care of themselves, be it some time at the gym or going out with friends.  Time when they can just breath and relax without  having to worry about pain levels, medications or cutting up food. 

3. Encourage them to join a support group.  As much as we need support and other people who understand & know how we feel, our caregivers need the same. They need other people to be a sounding board, to get new ideas from and most importantly a place where they could bitch about us (Ha!).

4.Give your recovery your best effort. We all want  to get back to our normal lives and to be able to do things on our own.  Our caregivers want the same for us. Armando beams with pride when he sees me working out or doing physical therapy. I know in my heart he is happy to see me working hard and trying. He posts more photos on Instagram than I do!  Our loved ones our caregivers have invested a lot of time with us and for us. I feel that watching us work hard, putting in the effort and slowly make our way back to recovery is as satisfying to them as it is to us.

5.Say “Thank You”. Seems obvious, I know.  But there are times I forget or worse yet, I take their help for granted. Sometimes I get caught up with my deficits and self pity I fail to see how much my family does for me. Our caregivers give us the support we need: emotionally and/or physically. Express gratitude often and openly.  This simple phrase means so much.

I know this list is short and inadequate. I cannot come up with anything that would be able to truly express how grateful I am. Do you have any ideas? If you are a caregiver, what is it that you would like?  Please let me know in the comments!

 

Much Love,

Momma Berna

Speaking Up

In August of 2016, I opted to have a Baclofen pump implanted  in my abdomen. It was my hope that the pump would help reduce the spasticity in my affected leg allowing me to run again. Of course my decision was based on more than just running. I wanted to be able to keep up with my boys, be less conscious of how I walk and gain the confidence I had lost.  I understood that the pump is only a tool, and I would need to put in the work to reach my goals.  And I was and am willing to put in the work.  I stretched, exercised and stretched some more. I am putting in the effort to rewire my brain to recognize that my foot is actually a part of my body.

One year and two months later,  I have not seen much success from the pump.  I  noticed small changes like my foot no longer curls up allowing me to wear sandals again (yay!), my foot now lifts completely from the ground allowing for a much easier heel to toe movement. Although it still happens once in a while, my leg no longer swings out from my hip when I walk. Otherwise, the spasticity is still high which results in  my leg still feeling like it is 50 pounds heavier than the rest of my body, my knee still does not bend when i walk giving me a very awkward gait and poor balance. 

One might think that running is simply putting one foot in front of the other in a faster pace than walking.HA! The biomechanics of running is complicated so I will not even try to explain, but let the experts educate you.  

All my life I have been conditioned to listen to my doctor and to follow orders without question.  After all, doctors know everything, right? Naah.

My email to my doctor got an auto “out of office reply” so I am waiting for him to get back so I could discuss my issue with the pump.  I have been warned that the tone in my leg might be what is holding me up.  Hence, the hesitation to raise the dose.  I have told the doctor that I feel it is much easier to work with no tone, than too much tone. I’ve not tested this theory, but i am willing to try if I am given the chance.  I am willing to take the chance. So, bring it on!

I understand doctors are cautious, I understand there are protocols to follow but I know my body. I know how far and how hard I can push myself.  

The New York City Marathon is happening next weekend. NYCM is my bucket list race and it was my goal to run the 26.2 miles this year. I have not given up.

I may have overestimated the “power” of the ITB pump, but I do know that I had put in the work. And I am willing to put in more. 

Much love,

Momma Berna

 

 

A Kaiser Cocktail & a Bikini Shave

Three weeks ago, I had my annual MRI. An annual MRI was recommended by my neurologist since she found two unruptured aneurysms in my brain and wanted to monitor them for changes in size etc. Two hours after the MRI the neurologist called, it didn’t think it was a good sign when the doctor calls immediately and on a Friday afternoon! She called to tell me that one of the aneurysms have gotten larger and needed to be treated. I needed to get a cerebral angiogram to determine what treatment is needed.  I would have two choices: coiling or clipping both are invasive (clipping more than coiling) and there are major risk involved. Besides, I do not really want anyone tinkering with my brain. I was freaking out. The angiogram was scheduled for September 18th.  I was a bundle of nerves that week. I looked up YouTube videos of the procedure, my level of anxiety was high.  Friday before the procedure a nurse called to reschedule the appointment! Ahhhhh one more week of hand wringing!

September 25th, Vincent drove me to my appointment at the Kaiser in Redwood

Cheesing it up before they take pics of my brain. PC: Armando

City.  I was told that the procedure would last about an hour with a 4-5 hour recovery time.  After being prepped with IVs and a short chat with the neurosurgeon, I was wheeled into the procedure room.

There was a large monitor just above the bed and multiple medical cameras.  One of the nurses told me he was giving me a “cocktail” through the IV.  I was given combination of Versed and Fentanyl. Another nurse proceeded to shave a small area by my groin. She even shaved the other side “to make things even” haha. Feeling relaxed and loose I said something like “wow, this is just  like a resort vacation! I get a cocktail and a shave!” the nurses laughed as I am sure they hear all kinds of drug induced mutterings.

After I was injected with a local anesthetic, a catheter was inserted into my femoral artery. I found out that the femoral artery is a direct highway to the neck where a dye will be injected and more detailed pictures of my brain could be taken. I was instructed to hold my breath while the cameras took photos of my brain. I felt a slight warming sensation when a dye is given to me prior to taking the photos. When I closed my eyes, I saw bright, colors!  I guess now I know the inspiration for “Yellow Submarine”.  One of the nurses put pressure on the incision for 20 minutes to stop the bleeding and to seal the cut.  It was awkward! I asked him a bunch of questions to make time go by quickly. I asked why the cut is done by the groin, when the neck would be closer. 

colored angiogram slide.
My brain is lit!

I was wheeled back to the recovery area where I had been instructed to lie still for the next 4 hours. I. was. STARVING. I haven’t eaten since 9 P.M the day before and it was already 2:00 P.M.  A nurse brought in a  bland turkey sandwich I had to eat lying down. I fell asleep despite the every 15 minute wound check.

The neurosurgeon came by with really good news. He said that the aneurysms are small and would not need to be treated. Yay! No one would need to drill a hole in my head! He mentioned that he still needs to confer with the neuro team regarding the results, but they usually listen to his recommendations, so he was confident with the initial prognosis. He also mentioned that the MRI & the angiogram results are complicated, as my brain is more complicated than others he has seen. Now I have medical proof that I am complicated!  

I am grateful that I do not have to worry about this too much anymore. Having two unruptured aneurysms in my brain had been on my mind these past couple of years. I referred to them as two ticking time bombs. In a way, I am glad that this cerebral angiogram was ordered.  It gave me a more realistic vision of what is in my brain. I am relieved.  I now could focus on recovery and getting stronger. I could prevent the aneurysms from growing by keeping my blood pressure at the normal range which I can achieve through a healthy diet and an active lifestyle. And avoiding stress (yeah I know, easier said than done.)  

The doctor, nurses and other staff at Kaiser Redwood City were very knowledgable, nice and accommodating. They definitely put me at ease. If any of them happen to read this, Thank you so very much!

For the next couple of days, I have to take it easy. No heavy lifting or strenuous walking. But by this weekend, I will get back to the grind!

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

I like Being Told “You Look Good”

I read Facebook groups and blogs for disabilities, strokes & chronic illness. I see posts where a person gets sad or offended when someone tells them “ You look good”. I know there are times when I don’t feel good, I am in a lot of pain or I feel very sorry for myself.  The last thing I would want to hear is “you look good” or “you look great!”.  

In my opinion, when someone says those words they are not meant to be empty platitudes.  Sometimes, folks just do not know what to say.  And more than anything, it is usually said with love & genuine concern. 

I am grateful when someone tells me “You look good”.

I am grateful because it takes a lot of effort for me to get ready to go out. Taking a shower can be exhausting. It takes a lot of time and frustration to get myself look presentable. I am glad when someone notices my efforts. There are days when I am in a lot of pain, and it shows on my face. When someone tells me I look good it means that for that day, at that time I am pain-free.

I am grateful because I work hard on my rehabilitation. I work my ass off to teach my brain to get back to some semblance of my old self. When someone tell me “ You look good” means my efforts are getting noticed.

thankful, grateful, stroke survivor

And I am grateful because I have family and friends who support me, help me get through the tough times and are there to boost me up when I am at my lowest. I look good because I have their love and support to carry round.

I get it,  folks with  chronic pain or chronic illness the words “you look great” could sometimes be hard to hear. Pain is hidden and for most there is no end in sight. We may look good on the outside, but the fear of when the next brain fog, neuro fatigue or nerve pain will attack is always on our minds.

Despite the uncertainty, I choose to be grateful. I choose to see the good intention behind the words. I would like to think that when a person tells me that, he or she means it sincerely.  I choose to believe that good health shows in face and my person. I will say thank you to anyone who sees this and care enough to let me know. 

Have you found gratitude in an unusual place? Please share!

 

 

Much Love,

Momma Berna