goals Archives * Survived to Thrive by 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

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!).

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

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!

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This is Me

I promised myself I would not allow this stroke to define who I am, that a stroke was something that happened to me, not what I have become. Until I realized that there is nowhere around this. I am a stroke survivor.

I am trying to embrace this “new me”, the survivor me. I am a much more flawed version of my old self. Looking at me, there is little to tell you that something is wrong. It is only when I start moving that my deficits become evident.

There are days when I feel that my head is stuck under a fish bowl and everyone is tapping on the glass. I can see people and hear people, but they are much too loud and it is difficult to filter out the voices from the noise. Being in a crowded place overwhelms me and if it’s loud, I get even more rattled. This overload leads me to becoming tired and grumpy.

There are days when my brain & body is my enemy. It is as if someone made a voodoo doll of me and he or she relentlessly sticking pins and needles on different parts of my body.

I move a lot slower than I used to. Both mentally and physically. I used to be able to come up with a smart ass remark about anything. I am still a snarky, sarcastic smart-ass my punchline are just delayed! I move slower. Being careful of every step and just simply dealing with the heaviness of my limbs. I slow people down and I know it can be difficult to deal with me. I try to be considerate of the people around me. The difficulties I experience are not all visible. I can’t even put words to how I am feeling sometimes. My family and friends rally me on, but I know it can be difficult on them too.

I have been given a journey on a road I didn’t plan on traveling. Fortunately, I have people around me willing to share my travels. There are many times, I have to ask. It’s not always easy and I am slowly accepting that needing help is not a sign of weakness.

What I have discovered is that inside this broken body and brain, I still see glimpses of my old self. The funny, sarcastic, smart, strong and determined me. I think that this old me is what keeps the new me moving forward.

half marathin finish — One week and two days before the stroke, I finished the SF Nike Half marathon (13.1 miles)

Three years ago, I was an average mom and wife, living an average life and doing extraordinary things to stay healthy. I was running 10 plus miles a week and racing 5&10ks and some half marathons on the weekends. I was an average runner who was only competing with myself. In October of 2014, I had a massive stroke. I was in and out of consciousness for about two weeks ( so I was told), and when I came to, my first words were “I need to get out of here, I have a 10k to run on Thanksgiving.” I was not aware that I had become disabled. My legs, which took me to many finish lines and helped chaperoned many of my boys’ field trips were no longer working. My left hand and arm were paralyzed as well. That reality did not hit me until the first day of physical therapy in intensive rehab. That was when I realized I had to learn to walk again.

This new me is cranky at worse and tenacious at best. There are days when I do not want to get out of bed and my biggest accomplishment is turning on the t.v. There are days when I feel I am ready to take on the world and in a small way, I feel that I do. I get discouraged, angry and get sad but I also know that some days I just need to put my big girl panties on and fight.

If you are reading this and you are a stroke survivor, I hope that I can offer you the information, support & encouragement you need to get through rough times. When you feel alone and misunderstood, I hope to be able to give you company. And hearing from you would also help me know that I am not alone. That there is a community we all can fall back to in tough and painful times.

If you are a caregiver or a family member of a survivor, know that we are very grateful for your presence in our lives. Although every survivor is different, I hope I could give you some insight into what a survivor is going through.

Much Love,

Momma Berna

I Didn’t Hit a Wall, I Straight Up Ran Head First Into It.

The Brazen Western Pacific race was my first ever 10k back in 2013. I planned on making this year’s race as my first post stroke 10k. I trained, I was pumped and I was ready. I asked my son Vincent to run this race with me.

I had trained, I walked around the neighborhood, walking up the hill and even attempting runs around the city track. Tuesday before the race, I walked/run 4 miles and I still felt good afterwards.

I posted my flat runner on social media and admitted I was a bit nervous for the following day. I was excited to do this race with Vincent. My plan was to have him run the 10k, finish get his medal and then have him wait for me at the last mile. He said “No, I want to stay and walk with you”. He gave me a boost of confidence! So we line up at the start, took the obligatory start line selfies and off we went! I decided to run intervals for this race. I did not use this method while training, but I figured it wasn’t going to make a lot of difference since while training, I run/walk anyway. I set my Garmin for a 2 min run 1 min walk. Vincent was goofing around (it’s nice to be at the back of the pack coz we had the trail to ourselves!) doing walking lunges during the walk phase on the intervals. Of course that didn’t last very long. Ha!

We kept up with the 2:1 intervals. It was 9:30 and it was already getting warm! I had lots of water in my pack so I wasn’t worried. Vincent & I were chatting and having a nice time. After the two mile mark, a very nice woman stopped me and told me how inspired she was to see me out there. She’s also had her share of health issues and she started crying, which of course set me off crying too! She ran the 10k and was on her last mile. She told me “no matter how long it takes you to finish, the important thing is that you finish!” I had her words in my head for the rest of the race. I had to finish.

My son was very impressed with the kindness and encouragement of the runners. He asked me how I knew all these people, I told him I didn’t know them, runners are just nice like that!

As we approach the turn around for the 10k, my leg started spazzing out. When my affected left leg spasms, it will kick out uncontrollably. I had to stop, stretch out a bit then continue. As with all Brazen races, the aid station was stocked with all kinds of goodies. Orange slices, candy, pretzels everything a runner needs to fuel up. I helped myself to some oranges hoping to get my energy level up again. We headed back. Vincent was getting very worried as I was leaning onto him while walking. I was determined to finish. A few runners were stopping to ask if I needed pain relief, others asked if they could get a course monitor to get help. I really must be looking pretty bad. I urged Vincent to keep walking. I was slowing down, but I wanted to finish. We were at 4.20 mi! (yes, my kid thought it would be funny to take a pic of my Garmin at 4.20)

4:20, runner, distance — Somehow this is funny!

I keep trying to convince him to continue we were so close! Mind over matter right? Focus on the finish! One step at a time. I had filled my mind with positive self talk (they didn’t work). I kept moving. I was willing my leg to move. I was literally talking to my leg out loud “swing, land on heel, roll to toe.” Since I was using my right to compensate for my left, I started having shooting pains going up my right leg. Vincent was clearly worried. It was nearing 11:30 am and the sun was beating down on us. Many of the runners could tell I was in trouble. Vincent had already asked one of the returning runners to let people the next aid station know that we neeeded help (despite my protests).

At this point, the lines of communication between my leg and brain have completely stopped. My foot was rolling over at every step, my leg was frozen and i was completely hunched over to my right. As hard as it was, it was time to admit defeat. A runner helped my son walk me to the bench. It was clear that walking was not happening. As we sat waiting for help to arrive, I was still contemplating the last mile. It was so close. I tried standing up, but Vincent held me back. I saw relief on Vincent’s face when the ranger’s truck finally pulled up and he had the a/c on at full blast.

As we were nearing the finish area I could hear Sam (the Brazen race coordinator)calling out the names of the finishers, the audience cheering and I could see the happy, triumphant faces of the runners. I was devastated. I had let myself down, my brain worked against me. I so wanted this to be a victory, not just for me but for other stroke survivors as well. I wanted my family & friends to be proud of me. I feel that I had let a lot of people down. The exhaustion that I felt from the race, did not measure up to the sadness, pain and disappointment I felt inside.

Now that a few days have passed since the race, I’ve had some time to think about what happened. Although I didn’t finish the race, I still tried my best. I am grateful to have a 19 year old son who still likes to hang out with his crazy momma. He and I got to witness the kindness of other runners who were willing to help and lend support when we were in need.

I have also received so many positive feedback and support from my family and friends. Am I still sad about this? Yes, I definitely am. I am also still experiencing pain in my hip and shoulder. My brain is still a bit foggy. Neuro fatigue takes a bit longer to recover from.

I am sad and disappointed. But I’m in no way stopping! I might lick my wounds for a few days, rest up the old noggin and come up with a better training plan. There will be another race, another 10k and I will come back!

Thank you, thank you to everyone who slowed down, stopped and offered encouragement, Advil, Bio-freeze and Gu. i know those few seconds mattered in terms of a PR.

I would like to give a special shout out to my son Vincent for putting up with me. We had nice conversations and talked about anything under the sun. He knew I wanted to finish the race, so he tried his best to give me emotional boosts and physical support. He was propping me up, urging me to keep walking. But it came to a point where he knew it was time to just stop. In his gut, he knew I could be in danger. I am grateful to him for looking out for me.

sons, family,love,stroke survivor mom — Vincent was my hero for the day.

Much love,

Momma Berna

P.S. I was able to connect with the runner I spoke with on the trail. Thank you social media! She is one brave, inspirational woman! This is her Facebook page: https://www.facebook.com/lifeinthedayofarunner

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The Stroke Survivors Club

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

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

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

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

There are some perks. There’s the premier parking spot which comes in handy specially around the holidays 🙂 Kidding aside, this club will help you find out how strong you really are. The challenges you will encounter is not for the faint hearted. No one asked to be in this club. Membership is for life. But you will learn about yourself, you will learn about who you can trust and who you can rely on. You will learn to fight. And fight hard you will. You will fight professionals telling you that you have reached the end of your recovery, you will fight against yourself when a little voice inside you tells you it’s time to give up. You will fight negativity from people around you.

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

Much love,

MommaBerna

Great Expectations: An Update on My Baclofen Pump

So, it has been 6 months since I had the Baclofen Pump surgically installed inside my body. Yup, had my stomach cut up, and a foreign device inserted to get medicine pumped directly into my spinal column to get my stroke affected leg to move somewhat normally again. This quite invasive surgery had set me up with great expectations. I had that scene from Forrest Gump in my head. You know, the part where Forrest was running from a pack of bullies, Jenny cheering him on with “run, Forrest, run!!!” His leg braces flying off and he takes off! Yup, I envisioned myself running as soon as I got out of the hospital. Reality hit me smack in the face. My leg still felt like it was 20 pounds heavier than the rest of my body. I noticed some improvement. I felt my knee bending, my leg felt lighter ( 20 lbs is better than 30 right?), but running is still proving to be difficult. My foot is still curling in too. I am able to walk faster, and have even tried jogging. I use the term jogging very loosely. My walk is much faster than my jog 🙂 My doctor and I are still working out the kinks. Still trying to figure out the correct therapeutic dose. Too much and my leg will turn to spaghetti, too little and the implant will be pointless.

In late November, when the pump was refilled the Doctor changed the concentration of the medicine. It is now heavier which means I only need a smaller dose (theoretically). He told me that it will take a few days for me to feel the difference. Unfortunately, I did feel a difference. But it was for the worse. My leg has

Further proof that I am dragging my foot. I am collecting dog hair as I go.

returned to pre pump status. My leg feels so much heavier and my friends and family are noticing that I am dragging my foot again and my knee is not bending. The nerve pain on my thigh also returned. Unfortunately, The nerve pain has also been really bad on my shoulder. I have been stuck in an insurance limbo this past December, so I am unable to call my doctor for advice and assistance. Read about that mess here:

I am sad that the pump is not working out as quickly as I expected. I would be really angry if it does not work at all. I am still putting on the work: walking regularly, going to the gym, stretching and strengthening not only my leg, but my body.

I am broken hearted. I had that huge goal of running the NYC marathon in 2017. A wise friend advised me to take a step back, analyze my goals and slow my roll. Perhaps, I will start with actually running first. No matter how slow, I will get myself to run again. I need to build my endurance. I need to start training. I need to set short term goals. I know for sure that I will do the 408k in March. I would like to actually run that race. And not take two hours to finish.

As hard as it is, I have to put aside my NYC marathon goal for now. FOR NOW! I will revisit this in a couple of years.

What do you do when you experience a set back?

Much Love,

Momma Berna