Over the Edge and Getting a Grip

First a confession. When I signed for the Downtown Dropdown challenge, I thought it wasn’t happening until October. I would blame the confusion on my broken brain, but confusion has always been my M.O. even before the stroke so there’s that. Anyway, I received the welcome email and was shocked and kinda scared that the event was only a week and a half away. Eek!!

The fundraiser benefits Downtown Streets, an organization which serves homeless and low-income individuals, giving them the chance to make a positive change in their lives. Living in the Bay Area, where the cost of housing is astronomical, homelessness has become an epidemic. The fundraiser is still ongoing.  Any amount you could give will be helpful & appreciated.

My family was not too excited about this craziness that I got myself into. They have every reason to be nervous. The building is 236 feet high (16 stories) and I will be lowered by ropes, with no net to catch me at the bottom. I was a little nervous, but I was also confident that I would be safe. I am sure that a big company like Adobe would not allow for an event such as this if all the proper safety precautions were not taken. There were little things niggling in my head: how will I be able to hold on to the rope? Will I be able to kick off the wall to help with my descent? How high is the building again?

The “day” arrived. I read all the instructions, precautions and details. After all the waivers were signed (there were a lot of them!), it was time to put me in the harness. It was a full body harness which wrapped around my hips and upper body. I had trouble putting the glove on my left hand, my fingers were not going in the proper spots. People kept asking me, “are you nervous?” Umm duh… We took the elevator to the 15th floor, then climbed up the stairs to the roof. There was a set-up for “training”. Basically, they taught me how to control my speed, what to do if the harness locks up-the rope has a braking system that locks up if one is going too fast. The lever to lead me down the rope will be controlled by my left hand. At first, I was “uh-oh, that would be tough.” But after a couple of practice sessions, I knew I could handle it (no pun intended).

The training session

So after the five or so minutes of training, I was ready to be hooked up to the rig. I was reminded of the steps: left hand to release, right to give the rope slack, keep feet on wall and gently walk down. And oh at around 20 feet there will be a stone column and you will lose your footing. Just keep going down then return feet to wall. Yup, easy peasy! Hooked up to the rig, I was ready to climb the ledge. That was the toughest part! It was not from fear that I couldn’t get up, but my left leg would not move. I asked one of the volunteers to lift my left up for me. The view up there was breathtaking. San Jose stretched out before me in all of it’s blue, hazy glory.  It’s go time! One cheesy smile for the official photographer (which will be my profile photo on social media for the next few years.) and I was off! I truly tried to enjoy the view, but there was so much stimulation happening around me. There was music, The instructions to remember, the cheering and reminders on the radio. It was no wonder that I was so tired after.

I had too much to think about and my poor brain could only hold so much info. Left hand-pull lever, right hand pulls rope. Feet on wall. Enjoy the view. Annnd…the stone column was before me. My left hand had slipped from the lever, and from down below, it looked as if I was stuck. The pros were checking in with me through the radio.  I just had to readjust my grip and I was off. I had to adjust my grip a few times. My feet did not work out too well. Once I was past the column, I could not get them back up on the wall. Someone on the radio was telling me to return my feet to the wall. Sorry lady, that was not happening. I don’t know what I could have done differently. Perhaps, I need to further strengthen my core so I could easily lift my legs up. My descent wasn’t as graceful as I would have liked but hey I landed.

I was so proud of myself!  I felt strong. I felt like a total badass. With my feet firmly on solid ground, I glanced up. That was when all the tears came.

I probably will do it again next year. It all depends on whether I could raise the funds.  In the meantime, what’s the next crazy challenge should I tackle? Maybe skydiving. Again?

 

Much Love,

Momma Berna

First Trip and an Ambulance Ride

 

This past Saturday was supposed to be a nice, quiet day. We went to my aunt’s surprise 70th birthday party, had tons of food and enjoyed some family time. Once home, we all decided to do our own things. Scotty had a birthday party to go to, Vincent was passing time playing video games before he picked up his girlfriend. Armando had gone to see Star Wars:Solo.  I decided to clean the closet in the office. I have been in a purging mode lately.

So there I was emptying bags, sorting things out for selling, recycling or trash. I was about to throw out an old box when I felt something in it. It was a piece of medical THC in candy bar form. I would make a sucky addict coz I had completely forgotten about my “stash”.  I’ve had some of the candy bar before, but just small pieces and all it did was help me sleep. I had just taken my evening meds, and my dumbass decides to have some “candy”. I have never been high (shocker, right?) so I thought maybe I’ll try a bigger piece (about the size of a Hershey’s square) than I had taken before. It took awhile to kick because I kept cleaning and organizing.  Then whoa! The tunnel

Only a real friend would text something like this.

vision kicked in. I did not know what was going on, so I sent a friend a text “what does being high feel like?” We texted back and forth, then everything got fuzzy. It was as if I just off a tilt-a-whirl, while blindfolded with sheer gauze and then given a few shots of tequila. I remember going to the kitchen to get water thinking that would help. I started to panic. I was home alone, I remember looking for the rest of the candy bar to show the medics in case I was overdosing (yeah, yeah I know…). I called Armando to ask him to come home. I was scared. All he heard was the slur in my words and he rightfully panicked. 

I was fighting hard to stay awake, when the medics rushed in all I heard were “stroke”, “survivor”, “smile for me”  “lift your arms”. They were assessing for stroke symptoms.  There were so many things happening all at once. I was screaming for Armando, I was screaming for my kids. In the ambulance, one of the medics was inserting an IV  line says “this is just a little prick” of course I responded with “that’s what she said”.  I truly do not remember the rest of the ambulance ride. I apparently kept saying I was in a time loop or I was detached from my body. I think I said “it’s a good thing I am wearing nice panties.” 

When high, take a selfie!

In the hospital, They ran me through a CT scan which thankfully did not show a stroke. Armando later told me I was saying stuff like “don’t put me on life support” “this can’t be happening again” and “I’m in a time loop”.  I told one of the nurses he looked like Chris Pratt.

At some point, I must’ve told them that I had THC. Armando, understandably was pissed and relieved at the same time. The boys thought it was funny and asked why didn’t I share. My sister was there too.  I had just put my family through an ordeal we all just dealt with a few months ago with my mom’s stroke.  

I kept going in and out of moments of lucidity. I would close my eyes and wish that when I open them, I would be at home in bed.  I remember asking the doctor “this is the real world, right?” A nurse asked me if someone slipped me something at a party. I told him, the party was for my 70 year old Aunt, and we came home at 2 P.M. Reality started to come back, slowly and then with a vengeance.  The doctors and hospital staff definitely changed their attitude once they learned I had used pot and not had a stroke.  It went from caring and compassion to that of annoyance and irritation. At 4:00 AM, they sent me home.

I feel so much guilt, shame and embarrassment  from this whole incident. I have profusely  apologized to my family for what I have put them through. I honestly do not think I could apologize enough. 

I had high hopes (no pun intended) for pain and spasticity relief through THC. That unfortunate first trip caused me to be put off trying it again.  

Much Love,

Momma Berna

Disclaimer: This piece is based only from my experience. I neither condone nor condemn the use of marijuana.

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

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!

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

 

 

My Year of Running Virtually

I have been an ambassador for a local running club three years in a row.  Represent Running is a group which promotes running locally, meeting and running with awesome people and promoting 3 Bay Area races in three different, but equally beautiful cities: San Jose (408k), San Francisco (415k) & the East Bay (510k).  Each race highlights the beauty and culture of the city it is representing. My job as an ambassador is to promote the races, spread running joy  and discounts on social media. In the past years, I have been able to  to run/walk the races “live” meaning I am there at the event toeing the start line along with everyone. Unfortunately for this year, I was sidelined for all three of the races! I had to run the races virtually – This type of virtual running does not involve virtual reality glasses while sat on the couch. 

The 408k ( 8k-4.9 miles) is my favorite local race. After all it represents San Jose, runs through downtown and local neighborhoods. Accentuated by the Mariachi mile at around the 4 mile mark. The finish is at the tony Santana Row where area restaurants lure in finishers with bottomless mimosas. The week of the race I was struggling with vertigo. Staying on my feet made me incredibly nauseous.  I was hoping the symptoms would go away that weekend. Vincent & I picked up my bib at Santa Row.  We walked the Row for a bit, but after a couple of stores I thought I was going to hurl on an overpriced shawl (tbh, I probably felt sick about the price too). I was feeling optimistic so I got my race gear ready, set my alarm and went to bed early with hopes that I would be able to stay on my feet next day.  Unfortunately, when i got up on race morning, I felt like I just came off a triple loop roller coaster instead of my comfy bed. 

The 415K is the San Francisco installment of this race series. The backdrop of this race is the Golden Gate bridge. The 12k takes runners across the bridge and the 5k runs along the Pacific Ocean. The weekend this race was on, the Bay Area was experiencing a heat wave. My silly, dumbass self thought it was a good idea to walk a couple of laps at the Relay for Life for our city.  The day of the race, I woke up with excruciating neuropathy on my foot. It felt like I was walking on hot coals.

 The 510k was the final installment of the Run the Bay series, this one is set in the East Bay.  I missed that one too, I was scheduled for cranial angiogram the next day and my anxiety was running high. 

The virtual race:

 For those uninitiated, a virtual race is where one signs up for a specific race, for a distance specified by the race but instead of joining the hundreds of people on race day, one would set their own date & location. I find running a virtual race challenging.  There are no cheering crowds, no aid stations, be no cheery faced volunteer handing me my medal at the finish line. Instead, the medal arrives in the mail and the only race photos are selfies (at least they’re free!).

A virtual runner’s aid station.

The race becomes a battle in my own head. I have to fight the voice that tells me it’s time to quit, the voice that says I don’t need to put myself through this. I could just stop no one is watching. 

I am quite fortunate that I only had to run one of these virtual races alone.  My long time friend and partner in insanity Tammy has joined me in most of my virtual races.

408k Virtual at Shoreline in Mountain View,CA

Writing this makes me sad. I am realizing that I have been experiencing setback after setback. I have not reached goals that I have been working hard for. I thought I would have been further along in my recovery.  Instead, I gave up on a 10k earlier this year. I have two more 5ks coming up before the end of the year and I really would like to do them live. 

As much as I love being an ambassador for Represent Running, I am debating if I will apply to be in next year’s team.  I do not feel that I am representing if I am not running.

 The connections between my brain and leg have not yet established my need to run. I still have to constantly remind my legs I am running. Otherwise,  I will start walking . This constant dialogue is mentally and emotionally exhausting.  

I long to run with my friends again. I want to be an active part of a running community. I will continue to work hard to get my running legs back and to get my body and mind stronger.

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