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

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!

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!

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.

stroke suvivor, stroke survivor club, Stroke awareness

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

Do You Have the Time?

Let’s talk about doctor’s appointments. No one ever really looks forward to them, they take up a lot of time and we don’t usually get the best news from a doctor’s office ( don’t eat that, lose this, start doing that).  So when we head to an appointment, we already some anxiety building up.

Earlier this week, I had an appointment with the Physical Rehab & Medicine doctor. My husband and I left the house one hour before the appointment which was 11 miles away. But this is the Bay Area and the traffic is a nasty bitch.  Even with the extra time, we were going to be late.  I called the office to let them know. The person I spoke with asked how late will we be, I said about ten minutes. She replied “Oh okay, that’s fine. If it’s fifteen minutes, we will have to reschedule”.  We made it and were only five minutes late! Yay! I checked in & was informed that the doctor was running 20 minutes late! Half an hour later, they called me in. As soon as I stepped into the exam room, I was once again told “the doctor will be right with you, he is with another patient.” Really ? Really? I called to tell them we were running late, they couldn’t have told me “ oh that’s ok, take your time. Tell you what, stop by and grab a coffee. “ Instead, I was sat in the exam room for another 25 minutes. I had done some complaining on Facebook and the only magazine in the room was a year old copy of Arthritis Monthly. It was a bad time for me to leave my Kindle at home.  I was scheduled for an adjustment of my Baclofen pump and Botox for my arm.  The doctor arrived, apologetic. He apologized for being late and he apologized for not having the adjustment machine! There is only one for the Santa Clara area. Hey, I know medical equipment can be expensive, but this is a big hospital system!

I  got Botox shots for my wrist & hand. I have to choose where I think it would be most helpful as I can only get so much Botox at a time.  The Botox is only effective for three months, so in those three months I have to work, work, work my hand! See, all these treatments are temporary. The hard work of re-wiring is all up to me.

I made another appointment for the adjustment,  keeping my fingers crossed they will have the machine that day. Getting to appointments is still complicated as I am not driving yet. The doctor wants to do another assessment.

Thank you for reading through my rant. I know it is WAY too much to expect to get a courtesy call from doctor’s offices to let their patients know that they are running late or them to consider that our time is valuable too. 

Have you had an experience similar to mine?

Does your clinic or doctor give you a courtesy call if they are running late?

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.

So hopeful at the start line.
My favorite oldest son.

 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!

Cross Training?

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