The Nerve of Me and Other Stuff

One of the many unwanted gifts of the stroke is neuropathy. It is nerve pain that affects my left foot and left shoulder. When neuropathy pain attacks I feel like I am being stabbed with a million hot needles The neuropathy is worse on my foot.

It gets so bad at times that the nerves cause my foot to spasm. My toes curl in, my foot lifts and I am not able to take a step. Through the years, this condition has improved a bit.

This Boot was Made For Walking

Recently, I went through a procedure called serial casting. It was done to help improve my gait. For five weeks, I had to wear a walking cast meant to stretch my Achilles tendon or heel cord.  i

I had the casting one in October, I had to dress it up.

Walking on Fire

The serial casting was deemed a success. I was given a carbon fiber ankle-foot orthosis (it sounded so high techy to me) or an AFO which is a brace to continue to help me with walking.

Although I have noticed an improvement in my walk, an unfortunate and unexpected side effect occurred. The nerve pain on my foot intensified. It was neuropathy on steroids.

My first test run with the AFO was at the mall in the height of Christmas shopping season. It started out nice, I was by myself and was free to look around without anyone bugging me to hurry up. Unfortunately, after about 20 minutes I got a searing, shooting pain from my foot to my leg. I was able to push through for a few minutes, but the pain kept getting worse. It was so bad, I held back tears as I walked out of the mall.

The next day, I had on the brace when I got on the treadmill. I wasn’t on for more than 10 minutes when the searing, burning pain started up. I had to remove my brace to continue to workout. But even then I was struggling with spasms.

Throughout the months of December, January and February, I was in agony. Walking was excruciatingly painful. I finished the 408k in February by the skin of my teeth and the help of a few good people.

I was hardly finishing workouts due to pain. I didn’t even leave the house all that much. When I did go outside, I would break out in sweat and grimace in pain when I took a step. Thank goodness no one noticed.

The Long Road to Relief

I emailed my PT about the pain. During our January appointment, she determined I had plantar fasciitis caused by the brace. Her advice was no walking, wear a night splint and to ice my foot. I had the 408k race three weeks after that appointment. I tried wearing the night splint, but it only exacerbated the pain. Icing my foot every night didn’t see, to really help.

When I told my pain management doctor about my pain issue and he suggested a nerve conductivity test or an EMG. After a fun time of getting shocked and poked (sarcasm font really needs to be a thing), the test yielded nothing. The next step was an MRI and a referral to a neurologist.

The MRI was to rule out any discs pinching nerves on my back. There were no pinched nerves, but they did find gallstones!! (I am seriously a hot mess). No worries though, they are too small to cause problem. I just have to eat healthily and drink plenty of fluids (cran-vodka is a fluid amirite?).

Moving on to the neurologist. Dr. tells me he will perform a “highly sophisticated and high tech” test on my feet. I was rather embarrassed when I took off my shoes since I haven’t had a pedicure in a while. Since was too painful to have anyone touch my foot, my toes were quite scary. As he gloved up, he again tells me that the tools he will be using are sophisticated but accurate. His face was serious. He then takes out a safety pin. Wha???? He proceeded to poke both of my feet with the pin. Noting that I cringed every time he touched my left foot. I cringed the same way when he touched my left foot with a cotton swab. I told him about the serial casting. He repeated the tests a couple more times, using his “high tech and sophisticated tools” having the same results each time.

He determined that as a result of the casting and my foot being placed in an awkward position for five weeks, my nerves had been damaged. Healing will take weeks if not months.

I was also referred to a pharmacy specialist. She went through the list of my current medications so that she and my doctor could prescribe the proper medication. It was recommended that I take an anti-seizure medicine. I read about the medication and was not keen on the side effects which included brain fog (I already have that), sleepiness and weight loss (that one isn’t too bad ). Besides, I really did not want to add any more pills to my already long list of medications.

Giving in, not giving up

After some serious consideration and really bad days, I gave in and am trying the anti-seizure meds. I cannot soldier my way out of this. How am I able to go to the gym when just walking is too painful. I cannot even stand in the shower as my foot would spasm as soon as I step on the tile. The pain I was experiencing was giving me a lower quality of life. Who knew that the procedure that was supposed to help me walk better would be the thing that would stop me on my tracks.

Rant alert

I placed a wheelchair request with my doctor. Walking has become has become so painful. He approved my request with this caveat:

“If you do get the wheelchair, I would not recommend using it very often, only occasionally when you have to walk very long distances. Walking is better to keep your muscles and bones as strong as possible.”

Really? Really? This guy has been my doctor for the past three years. I’ve talked to him about my frustrations of not being able to run. I see him every three months. I am insulted that he would even insinuate that I am being lazy. Does he not take notes? Has he not heard a word I’ve told him all these years? I am not trying to get out of walking. The last time we met face to face, I told him that I had just walked the 408k race. I had walked 5 miles! It is infuriating that he has not made an effort to get to know me as a person. An added frustration is that I cannot easily switch doctors. He is the only one under my insurance provider that is trained in both administering Botox treatments for my spasticity and adjusting and refilling my Baclofen pump. Rant Over.

Small Victory

I have been on the anti-seizure meds for a week and a half. Going to the gym pain free was delightful. The pharmacist warned me that there might still be breakthrough pain which has happened. But they are not as crippling like they were before! So far, I haven’t felt any of the side effects including weight loss 😝.

iMy first pain free workout in three months!

I am ecstatic that I’ve had two pain free work out days! My nerves are finally settling down. My PT still would like me to not wear my brace just yet. To make sure everything is completely healed up.

It was discouraging that the serial casting didn’t turn out the way it was expected. The damage it seems is fixable. This time around, I didn’t have to push too hard to get the help I needed. I guess, by now they know I don’t give up easily. Ha!

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

Walking Universal

Harry Potter experience,Universal Experience
The entrance to magic!

July 20th 2017, my family set out on our first “real vacation” after the stroke. I was apprehensive. I used to be in control charge of every detail of our vacations, down to packing up the car for the road trip. I dubbed myself the Tetris champion of luggage packing. I was able to cram luggage for 4 people, snacks and “other essentials” in the back of the Impala (may she RIP) and now the CR-V. It is not easy to not be in control charge anymore. The boys are older and they can pack their own luggage– so what if they only pack one pair of undies– and I instructed them on how to arrange the bags in the car trunk. My anxiety was still high. What if I get sick in the car? What I didn’t bring enough meds? What if ? what if? What if I just take a deep breath and just enjoyed myself?

elevators, crowds,
One of four very long & crowded escalators.

Saturday, July 22, 2017, my sister celebrated her birthday at Universal Studios Hollywood. She booked us for the VIP tour and boy it was posh! The day started with a delicious breakfast which we almost missed coz our GPS led us astray.  After inhaling yummy pastries (sorry no pics), we met with our guide. VIP perk #1 we get to jump the line on any ride we choose! Which  was very much appreciated. It was around 1,000 degrees and the park had about a million guests that day! Our first stop was the lower studio. I had forgotten that “lower studio” meant four super crowded, super long escalator rides down.  And we had to keep up with our fast moving tour group.  I love the rides at Universal, I love thrill rides in general. But this time I was apprehensive, I didn’t know how my broken brain will react to the jostling, shaking and speed of the rides. The boys were worried that I will have another stroke if I get on the rougher (fun) rides.  I got on  Jurassic Park since I know it was pretty mild and really wet which was a plus in the hot weather.  

The big dinos were out to say hello!

Jurassic ride, Universal Studios Hollywood
Whew !!! it was wet!

Harry Potter experience
I am pretty sure I was floating

The moment i have been waiting for finally arrived! We were at the Harry Potter Experience! I was so giddy, I swear I would have floated away if Armando wasn’t holding my hand. It.Was.Glorious!!! The snow on the roof tops, the shops and the owls! And of course Moaning Myrtle was in the bathroom being her old, irritable self. It was understandable that my son was nervous about my getting on the The Forbidden Journey ride. Our guide

Hogwarts castle, magic, Harry Potter
Hogwarts:The outside was great, but inside was enchanting!

described it as fast paced, rough and with lots of flashing lights (in my mind: FUN).  The ride was UH-MAY-ZING! I would love to get into detail, but it is something to be experienced.  Yes, I went twice.

I am proud of myself for keeping up with the tour group. I am proud of my mom for keeping up s well. It was definitely fast paced. I am sure the other folks in the group were a tad impatient with us.  My mom braved the Walking Dead attraction. Speaking of, how many people could say “I was bit! I was bit” while exiting the attraction and actually walk the part!

zombies,amc walking dead,scary
The Walking Dead Attraction

I knew that going on vacation will not be the same after the stroke. I will be slower, the kids will worry and for now, I will have limitations. But I am determined that I will not be held back. I was going to rent a wheelchair for the day. I am glad that I decided against it. This was a  challenge I overcame. The heat, the crowds, the noise and the pace of the tour were challenging. We had to keep up with a group of 6 able-bodied people. I more than once considered dropping out of the group, but I am glad I didn’t. We saw places at Universal Studios that are not open to the general public.   At the end of the day, I was wiped. I could not think straight,  my leg refused to move and I felt like i had no control of my body anymore.  I knew that the neurofatigue would be kicking my ass the coming days (and it did).

I am looking forward to more vacations and more adventures.   My disability might slow me down, but it will not limit me. I admit I tire easily, I am slower and it takes longer for me to recover.  I am not ready to stop. If I am too slow for some people,  they can move ahead of me and I will hobble my way to the adventure that awaits me.

Much Love,

Momma Berna

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


A part of the waterfront course.
A part of the waterfront course.

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. IMG_8603

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!
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