runner Archives * Survived to Thrive by Momma Berna

Speaking Up

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

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

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

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

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

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

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

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

Much love,

Momma Berna

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

Hot Chocolate, Cold Weather

I love the rain. The sound of it as it falls on the roof and hits the window panes, the way the air smells before the rain falls; for me it is the scent of the air preparing to be cleansed. Rain for me is a lullaby, a gentle song that calms my mind.

Running in the rain was a treat. I feel so bad ass when my sweat mix es with rain water. My faithful running partner Twinkie loves it too! She loves splashing on the puddles as do I. So, my decision to sit out the Hot Chocolate Race tomorrow was really hard.

The Hot Chocolate Race is a very well-organized race and running through Golden Gate Park is beautiful! And of course, chocolate! They give chocolate at the course and after you cross the finish line, a chocolate fondue in a cute little bowl! The swag is nothing to sneeze at either: a nice, warm, cozy jacket.

This year, the Hot Chocolate race just happen to be on the same day that a big storm hits. I decided to sit it out for a few treasons: It is a pain in the ass to get there and I am sure it will even be worse in the rain, the park will be muddy and slippery. I usually would not mind this, but my balance is still off and my affected leg has been giving me trouble lately. The cold has literally frozen my leg. Walking has been tough and painful. The choice to DNS (Did Not Start) this race is a common sense decision (yes, sometimes I still use my broken noggin).

2014 15k run. This was on the Great Highway. This year, this course had to be rerouted as big waves were predicted to wash over the road.

I am worried that I would slip, get hurt. and set my recovery back. Sometimes, it is better to just admit that the forces of nature are just more powerful than I am 🙂

I had run the 15k in 2014, skipped 2015 coz I was just out of the hospital, walked the 5k last year, and sitting it out again this year. I am optimistic that I will be able to the 15k again next year.

So, as I sit here in the warmth of my living room, wrapped in my cozy blanket, I am sending out well wishes that all those who braved today’s race, stay safe and enjoy their well deserved post race hot chocolate.

Much Love,

Momma Berna

One of the highlights of this race and any race, is running into friends and running with friends (HC 2016)

East Bay 510

The East Bay 510k was the final race of this year’s Run the Bay series. As usual, it was a well organized, well supported event. I’ll start with the free parking close to the finish line and the busses to the start line. That was totally rad! Parking has always been a major stress factor for me during races. So having this perk was very much appreciated.

I love the shout out from the start line, it truly made me feel special. The new course was lovely! it was mostly flat and the waterfront view was very pretty. The kayakers gracefully gliding on the water were interesting to watch. Running through the park which was a nice break from the usual blah views of road races.

This was the first race that I had done in two years where I did not have to hold anyones hand or had to use a cane. I can say that I walked this race all by myself! I have to admit that I didn’t think I was able to finish. I was just not ready! I had spent most of my summer exercising in the pool. Then I had to sit out 7 weeks after I had surgery for the Baclofen implant. And it was warm at 8AM in October!! I was exhausted and disappointed. I thought that my leg would be more cooperative specially after the surgery. It was supposed to make my leg looser, but I have not felt much of a difference. Hopefully a few more tweaks to the amount of medication will do the trick. I was relieved to reach the finish line.

I was feeling sentimental about this race. As I had mentioned, this was the last of the Run the Bay Series for the year. I had so much fun being an ambassador for this series. Represent Running was a great group to be a part of. I do hope that they will the program again next year.

Much Love,

Momma Berna

Ha! Not sure if this was about me or the weather!

Represent Running

There are many things that I love about running, but the one that I really cherish is the camaraderie and fellowship among the runners. These past couple of years I have been privileged to be a part of a local running group: Team Run The Bay. This team is spearheaded by Represent Running who is the powerhouse behind these three local, fun, and well organized races: the 408k, Across the Bay 12k and 415k and the East Bay 510k.

Being a part of this group has been a spectacular experience. I’ve met some really inspiring, kind and FAST runners. I’ve been accepted into this fold of runners as I hobble/walk my way to the finish line. Hearing the cheers and applause from JT and the team as I reach the finish line, never fails to bring tears to my eyes. Seeing posts on social media from the different ambassadors, is very inspiring. I may not have most of the other ambassadors, but I feel that I know them personally (sorry for the stalker vibe). To be accepted as a ‘runner’ by this group has really been a privilege as I have not done any kind of running at all these past two years. I had rolled, walked and hobbled instead.

The last race of the 2016 Run the Bay series is happening on October 9th. Run the East Bay and represent the 510. This also completes the Run the Bay Challenge . If you had run the 408k and Across the Bay 415, this is the final race of the series where you will get the extra bling. Join the excitement of the East Bay 510k. Register here! Use code Represent2016BG for a 10% discount.

I would like to express my sincere appreciation to the Represent Running Crew for welcoming me into your fold. I have felt welcomed, accepted and loved.

I am looking looking forward to the last race of the year. And I am keeping my fingers crossed that I would be a part of the team again next year.

A look back:

i still needed support and my husband is always ready to give me a hand.

Pump Me Up

A few weeks ago, I underwent a trial to see if I was a candidate for a Baclofen pump As the results were positive, I elected to ahead and go through with the surgery. The doctors told me, that there was going to be a two to three month wait to get something scheduled. I was eager, but was not bothered by the wait time. I was going to use that time to work-out, strengthen my core and just get stronger all over, After all, I will not be able to exercise the way I am used to for 7 weeks after the surgery and there will be no pool exercises till the incision heals (one month).

i will miss Aqua Zumba! — I will miss Aqua Zumba!

One week after the trial, the doctor called and told me that there is an available time on August 25th, a mere three weeks after the trial! I think I mumbled something that goes ” Like, this August? In like two weeks?.” The doctor replied that I can have the rest of the day to think about it and to let him know the next day what my answer would be. I panicked a little, thinking I let go of an opportunity. I talked things over with Armando and we both agreed to give it a go.

The day of the surgery came, we check-in and get settled into the pre-op room. As soon as I get into my hospital gown, the nurse told me that the surgery time was moved forward, The surgery in front of me got cancelled.

I look too happy for someone who is about to go under the knife. The drugs must be working already.

Waking up, I am now officially battery operated. The battery would last seven years, but I would need a “top off” every few months.

To be honest, I expected to “run” out of the hospital. I didn’t expect the pain that I was going to be in. I knew going in that I will be given the smallest dose to start with but it was still disappointing that the result is not instantaneous. It was like opening a much desired Christmas present, but the major parts are still missing. The medicine will be slowly adjusted until it reaches the best therapeutic dose. I now need to work much harder as I have been given a major tool for recovery. I do have to take it easy for a few weeks to let the “equipment” settle into my body. This next few weeks I am only allowed to walk, lift no more than 5 lbs, no twisting and no reaching up, no sit-ups and no jumping. Yikes! I really have to watch what I eat to stay healthy.I will be seeing my physical therapist soon, so I will work with her on safe and effective workouts.

One of the nurses asked me what my plans are now that I have the implant. I had only told my close friends and family this goal:, I plan on running the NYC Marathon in 2017. I will enter the lottery in January, and if I do not get picked through the lottery, I will enter as a fund-raiser. I heard a saying once (not really 100% sure of the words) that goes “If you let your intentions known,the universe will conspire to make it happen” So here you go universe I have set forth my intention: I will run 26.2 miles of NYC!

Much Love,

MommaBerna

Balance:

I had just finished my balance exercises. Somehow, during the stroke my brain’s wiring got all jumbled up and balance was one of the things that got fried. This is true for many stroke survivors. So as much as I can, I have added balance exercises to my daily routine. I look kinda funny standing in a corner eyes closed, wobbling precariously. Brain rewiring is not a glamorous job.

Balance has always been elusive to me (heck, I can’t even balance my checkbook. HA) I look really funny riding a bike. My boys always teased me about getting training wheels. As I relearn how physically balance, I am also learning how to have balance in other aspects of my life. I am now a much slowed down version of myself, so planning and balance is essential. There was a time where I could get caught up in reading a book for hours. And still be able to be ready to get the boys to where they need to go. Now, I need to be cognizant of the amount of time I do things. I can spend a good of time reading, watching t.v. or surfing the internet, but those activities will not help me get better. I put in time to workout, write, work on my hand and fingers and stretching (this helps with getting my movement back). I need to once again be a productive member of society. How do I fit all of these in one day? How do you keep balance in your life?

Much Love,

Mommaberna

Stalled but not Defeated

” But man is not made for defeat. A man can be destroyed, but not defeated” – Ernest Hemingway

The word “plateau” is one that brings fear to athletes. By definition PLATEAU is to reach a state of little or no change after a time of activity or progress. But for athletes, to reach a plateau in their training means they now have the challenge of having to change up their training. For runners it might be adding hill repeats, adding fartleks to their routine or simply cross training. This are what athletes do when faced with a lack of progress. They do not see the lack of progress as a time to quit, instead it is an opportunity to establish a new routine so they can better themselves.
Apparently for some doctors, physical therapist and of course insurance companies a plateau is the time to just quit. To give up and lose hope. When i left the rehab facility, the neurologist and the psychologist both told us that I have six moths to regain what I have to regain. After the six month mark, I am just to accept whatever progress (or lack of) I have and learn to live with it. I have to admit, hearing that was scary and painful. I was not going to accept that I will be in a wheelchair forever. I was so afraid to hit the 6 month mark, that I worked hard to start walking again.

I had made a lot of progress during the first six moths,but I knew I had a long way to go. I kept working on getting myself better. There would be moments when i felt stuck. I went to my Neurologist with questions. I would ask her for ways to improve, for ways to retrain my brain.

Her response every time would be “You have plateaued. There is not much you can do.” What I heard was “The insurance company have determined that you are on your own. Good luck” What I did was researched, asked questions and worked harder. I found out about Botox, acupuncture,E-stim all of which helped. But the work is still up to me. There has been many bumps along the road. I get frustrated, I hurt emotionally and physically. But I keep going. As much I would like for there to have a “miracle” cure, I know there isn’t one. There are research currently being done on how to rewire the brain, but for now I only have hard work to count on. It has crossed my mind to participate in different trials and I probably will if I find one that I would feel most comfortable with.

If given the opportunity, would you participate in an experimental treatment?

I will keep asking my doctors questions, I will keep working hard. I have proven doctors wrong in the past and I plan on doing more of that in the future.

Much Love,

Momma Berna

Trials and Expectations

On Monday July 11th 2016, I will be checking in at Kaiser Redwood City for 5 days. This time, I am going in on own volition. I was reading up on post stroke treatments and there are many out there. Many of these options were not brought up by my doctors. In my research, I learned about the Intrathecal Baclofen Pump or ITB pump. Baclofen is a medication that I take that helps relieve the spasticity and tone that was the result of the stroke. In simple terms, spasticity is why my hands stay clenched or why my knee does not bend when I walk. I’ll get into detail about tone and spasticity on another post.

I have worked hard at getting to walk again, I can even try do a quick jog. But when I do, my left leg feels like it is wrapped in a cement block. By getting the pump, I hope that the tone on my leg would ease up enough so I could run again. I won’t be in constant fear of falling on my face again, and I wont be causing damage to my other joints.

This 5 day stay will be to determine if the pump is suitable for me. The trial period involves the insertion of a catheter through my spine where the medicine will be delivered. During the hospital stay, they will determine if the medication is a good fit for me. They will also determine the right amount of medicine that I will need. I am to get physical therapy twice a day to get an objective view of my progress or lack of. After the trial, if the medication is effective, I can decide if I will go ahead with the implant surgery.

I maybe putting too much hope into this trial. I am expecting that this trial will show that I will be able to run again. That my leg will function as it should again. That it will stop the painful spasms that wake me up in the middle of the night as if someone is tightening a vice grip on my thighs. I have very high hopes. After the trial period, I will have a few months to decide if I would want the surgically implanted in my abdomen with a thin catheter attached to my spine delivering medication.

The doctor has informed me that this method had worked very well for people with such high spasticity that they are not able to get up from their wheelchairs. In my mind, this sounded like this “if it helps people who cannot walk get up and walk again, then imagine what it can do for me!”. The doctor quickly burst that bubble by saying “you might not notice much difference in you” BUZZKILL!!!!

I am scared, I have high expectations, I am hopeful. If there is a chance that this will work, this trial is where I get to find out.

Please send out some positive vibes for me! Stay tuned!

And I Get Up Again

Previously on MommaBerna: I had talked about my first (and thank goodness my only one so far.) fall. This was how it happened. In this installment, I’ll talk about my emergency room experience. The drive to the E.R was a tad dramatic. I guess the adrenalin from my fall was wearing off. I took a quick look at the visor mirror and what I saw was my bloodied, swollen mug. This was when I emotionally fell apart. My poor husband, driving in an already panicked state, now also had to calm me down.

I was crying “oh dear God, I am already crippled and now I am going to be ugly too!” And the tears were falling freely and loudly. I knew I was going to get stitches, I am going to get a huge ugly car. We get to the E.R. and of course, there was a long line of people waiting just to register. I was called in, given an initial assessment and was sent to get a CT scan (I am pretty sure that after all these CT scans and MRIs I will either be a superhero or I’ll glow in the dark). I must’ve hit my head when I fell and Armando told them that at intake. I suppose as someone whose had a stroke, they are more vigilant about checking for internal brain damage. The doctor took one look at my cut, and determined I would need stitches. The room I was given was tiny, imagine Harry Potter under the staircase cupboard room tiny.

So….for my fall I get not one! not two! but four shots of numbing stuff injected to my face! Why don’t they have numbing stuff to numb the face for the numbing needle? I had to get my wound washed out, so i had my face on a bed pan which Armando found hilarious! I was tended to by a sweet, gentle and kind Physician’s Assistant. She had me calm and settled. Her fingers were so light that I hardly felt the stitches going into my face.

The bedpan was on the wrong end of the bed!

I want to say that I jumped right back into the exercise wagon after the fall but honestly, I was scared. I did not want to fall and get hurt worse than I did. It took me a couple of days to get back to the gym. The gym employees had a great time joking about how I look like a tough guy walking around with my shiner.

I suspect this won’t be the last fall. I am more cautious now, and I really haven’t walked much since then, I have however discovered the joys and safety of water walking and Aqua Zumba.

Much Love,

Momma Berna