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.
I have been an ambassador for a local running club three years in a row. RepresentRunning 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.
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.
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
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.
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!
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?
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)
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.
Whew! I’ve had my mailing list set-up on MailChimp for like forever. The email where I invite people I know, people I have interacted with and family members to introduce them to my blog. You see, some of them don’t have face-insta-twit or they are just not a part of my social media circle.
I have had the list set-up, formatted, re-formatted for a couple of months now. I have been too worried to hit send because…well…I am afraid. I am afraid of rejection, I am afraid of criticism etc. etc. But fear will not move me forward nor will it help me get my story out. So today, I clicked send.
But even with just one hand to type and getting seriously brain tired after a few sentences, I’ve got a story to tell! I may not tickle your fancy like E.L James, or give you nightmares like Stephen King (he, is the reason I am afraid of– no why I hate clowns). So if this is your first time here on my blog, welcome. Stay for a bit, I hope you enjoy what you read and come back. If you have visited before, welcome back. I do hope you keep coming back.
Now that I’ve hit send remember I am just a girl, sitting by her laptop, waiting for you all to read my story 😉
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.
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.
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 thata 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).
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.
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
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.
After working a six hour shift slinging McBurgers, my mom and dad came to pick me up from work asking me to hook them up with a couple of Mcsandwiches. So, I walk back in the restaurant as this tall goofy boy was hanging up a handwritten sign that said “.99 hot Fudge Sundays” I stood there trying not to laugh, when the other person who was behind the counter asked me, “do you see anything wrong with this sign?” I was a new employee and to be quite honest fresh off the boat and quite shy and timid (imagine that) I did not want to make anyone angry at me. But being the big nerd that I am I answered, “Other than the bad hand writing? I don’t think we are selling the day of the week”. The tall, goofy guy looked at me, rolled his eyes and flashed a brace filled smile. I got my sandwiches, and as i was walking out Goofy guy asked if I wanted to go out sometime. I was a product of an all girl’s Catholic school and I have never, ever been on a date before. I must’ve stammered something coz he gave me that smile again while he held the door open for me. A couple of chaperoned dates later (my dad would not let me go out with him unless we were chaperoned), our McRomance blossomed. That was twenty five plus years ago.
I can honestly say, we have come a long way from saying “would you like fries with that?”. Both of us worked our way through school, Armando earned his degree in Political Science from Santa Clara University, where a few years later, I received my Masters Degree in Counseling Psychology. It was fitting that we had our wedding at the beautiful Mission Santa Clara. This past August, we celebrated our 20th wedding anniversary. The twenty years were spent raising two boys (Vincent-18 and Scotty-15), Armando served as a Milpitas Council member for 12 years while helping the San Jose mayor balance the budget and I have been a case manager and counselor for the homeless, for schools and i’ve also worked as a substitute teacher.
Our marriage is not all about roses and rainbow, there had been storms along the way. But no one could have ever predicted the level F-5 tornado we would be facing in October of 2014. Armando sat by my bedside night after night while I was in the hospital. During the day, he went home, took care of the boys, then went to work. In the evening he came back. He read to me, told me about the day he and the boys have had. He did this even as I was asleep for long periods of time.
Armando, the goofy dude who misspelled “sundae”, has and continues to be the rock that holds me up when I am about to fall. He has more than upheld his end of the vows we promised each other on August 10, 1996. I know I sometimes forget to say “thank you” and I know saying “thank you” is not nearly enough. My emotional survival and physical recovery would not have been possible without him by my side.
Often, the person who is sick or is recovering from an illness gets all of the attention from family and friends. Their caregivers do not get the love and attention that they so well deserve. Armando has given up so much so he can support me. I would not have made the progress I have now if he wasn’t by my side. He has picked up the slack in terms of getting the kids to school, keeping up the housework, taking me to doctors appointments and making delicious meals! He gets tired, he gets frustrated and yet he continues to be strong not just for me, but for the boys too.