Welcome to My Story

Pain in the Ask

I have chronic pain. Some days are worse than others. I work hard on my recovery and sometimes I over do it and only a strong pain killer gives me relief. When I asked my Pain Management and Rehab doctor for a refill of my meds, he flat out refused. I waited a couple of days before I emailed Dr. K in order to avoid calling him an egotistic, arrogant, jerk-face (I’m keeping it PC 🙂
Last Monday, November 6, I went to Dr. K my PM&R doctor. It was a scheduled visit to get my Baclofen pump adjusted and get Botox shots for my arm. Dr. K was condescending from the get go. I told him about my frustration with the pump. He tells me, “It could always be removed”. The removal process is a major surgical procedure. As was the installation. He didn’t care to discuss what my frustration was nor did he suggest what could be done for improvement. Having had the pump for a year, I mentioned that I hoped that the pump would be effective enough that I would have been able to run a marathon by this time. I think the eye roll he tried to hide almost broke him. He was so incredibly dismissive.
He adjusted the pump and when I asked what the dose was, he just said “I increased it by 10%”. Thanks pal, you couldn’t have given me an actual dose? It felt as though he didn’t want to be there.
When I asked for the medication refill, he gave me this explanation “ Narcotic or opiate pain medication could alter pain receptors in the brain when taken on a regular basis.” He also said that “people tend to misuse them”. He suggested instead to increase another medication I am currently taking. Why would I want to increase my meds on a daily basis, if I only need to take a pain medicine once in a while? I was so upset when I left his office that day.
I was upset because Dr. K didn’t even look at my chart, had he done that he would see that the last time I filled my script was back in June. He made a generalization about me based on my request. I sent him an email a few days after my visit. I had to calm down, gather my thoughts and figure out what I wanted to say. In my email, told him I felt that he incorrectly assumed i will be abusing my meds, I have tried over the counter medicines and they have not helped. Pain increases my blood pressure – the cause of the stroke.
His reply included a blurb about opiates are not helpful long term for chronic pain. I felt once again that he completely ignored what I said. He recommended pain management courses and chronic pain support groups.
I am upset because I feel like I am begging for a better quality of life. I cannot prove or disprove the doctor’s perception that chronic pain sufferers have a tendency to abuse pain pills.
I understand what he is trying to do. There is a huge opioid addiction happening in the U.S right now and doctors are understandably cautious. He is protecting me from what could be a horrible addiction and he is also protecting himself.
In the meantime, people like me who suffer chronic pain are left to well…suffer. In the spirit of advocating for myself, I sent the email. I do not plan on using breathing exercises when I could hardly breath due to pain.I use alternate therapies, but sometimes only pain medication helps. I am in the process of looking for a different doctor. This recovery process is going to be a long road and I need people who are willing to support me along the way.

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!

To know Me is to Understand Me

I am sure you are all familiar with “knowledge is power”.  It is a well-worn adage thrown around as part of valedictorian speeches & candidate statements during campaign season.  Commuters have been enlightened by the phrase through bumper stickers for ages.

We expect professionals to be knowledgeable in their fields. Heck we expect them to be downright geniuses at their chosen profession. This is especially true for our medical providers.

Thankfully, most of the medical professionals I have met are very knowledgeable.  They have a very good grasp of issues related to strokes & their treatment.

Knowledge is gained through education & experience. Keeping up to date with the latest information, research & constant study helps expand knowledge in their chosen field.

But just because doctors know what they are treating, does that mean they understand their patients?  

Knowing how medications work, how our bodies are supposed to work and how those meds affect our body, are great qualifications, but for me it isn’t enough. 

As knowledgeable as my doctors and therapists are, I certainly would be appreciative if they also understand me as a person. Understanding is acquired on a deeper, psychological and personal level. I would like to be treated beyond being just a  diagnosis and medical record number.  I want this because if someone understands who I am and what my goals are, we could together forge clearer path to reaching that goal.

I met with a new physical therapist recently. As we enter her office, before I even sat down her first words to me were “You know, it has been 3 years, you should not expect too much progress right?” I slowly sat down, took a deep breath and worked on not crying my eyes out. I told her “ I will run again”. To which she replied “you could always try the paralympics”.  Her words hurt and hit me hard.  Not that paralympics  is a bad thing, but up until that moment the thought of being a paralympian has never crossed my mind. I was and is still convinced that I will regain my “normal” running legs. I wish she had taken the time to speak to me first, get to know who I am and talk to me about my goals before she abruptly told me about the paralympics. It would also have appreciated a little more information about the paralympics before she sprung it on me. 

The psychologist  I saw pretty much said the same thing. She gave me the “you’ve plateaued” speech.  I made an appointment with this psychologist because I wanted to talk about my frustrations and anxieties about my recovery. The first thing I told her was “I don’t want anymore meds.” She went through her list of questions, I opened up a bit. Then she says “I’m going to set up an appointment with one of our psychiatrist, he can talk to you about maybe adding more medications or increasing your dose. I met with her wanting to have someone i could objectively speak to  regarding my fears, anxieties & frustrations about my recovery.  I did not want  someone who will medicate me to numbness.  She continued to insist on medications. I did not make a return appointment.

Hospital staff & medical professionals are short on time. They are under pressure to get patients in & out of the clinic in order to serve more people.  But taking a few minutes to ask questions, looking beyond a medical record would mean so much to the patient who you will see on a regular basis. Be a person we can trust to not judge our deficiencies and dismiss our goals. Be one who is willing to help us reach those goals. If the goals are unrealistic, please meet us in the middle and help us to get there. Stroke survivors fight daily to overcome our deficits. Although, we have support from our family and friends It really helps to have our medical professionals understand us so that all of our bases are covered.  Healing and recovery goes on much smoothly if we are well supported.

What would you want your doctors or therapists to understand about you?

Do you feel that you are able to talk to your medical team and express your needs & goals?

P.S I have been seeing the same PT, we’ve had a couple of sessions since that fateful first meeting. I believe I have shown her what I am capable of achieving. Her & I are now working hard to get me back to running!

 

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

This is Me

Hello there. Perhaps you are thinking” oh no, here comes another blogger who thinks she knows everything.” Sshhhh… It’s true I know everything! (just kidding there are days when getting out of bed is my greatest accomplishment). Have you had days like that?  Days when you feel you’ve opened your eyes in the morning and that was your version of waking up? Are there days when you feel that your brain is stuck under a glass fish bowl and everyone is tapping on the glass? You can see people and hear people, but they are much too loud and it is difficult to filter out the voices from the noise. At that moment, it is all noise.

Then there are  days when your own brain & body is your enemy.  It is as if someone made a voodoo doll of you and they relentlessly sticking pins and needles on different parts of your body.

What’s worse still is that no one in your close circle of family and friends quite understand what you are going through? It is difficult enough to explain, it is much harder for anyone else to empathize.  

You have been given a journey on a road you didn’t wish to travel. And along this road, you feel that you are traveling alone without a GPS. And it’s hard to find anyone to ask for directions.

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 a community we all can fall back to in tough, painful times.

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

You see about 3 years ago, I was an average mom, 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 was then deemed disabled.  My legs which took me to many finish lines, allowed me to meet the best friends that I have are no longer working. That reality did not quite hit me until the first day of physical therapy in intensive rehab.

There are have been successes and defeats in my recovery. I am surprised that I am now tearing up as I type.  I am sure there will be more struggles and success in the future. I can only use one hand to type right now, so please pardon spelling & grammatical errors.

Please join me. Read my story as we can travel this rough road together. Surviving is the first step, the rest of the journey is to thrive.

P.S. I participated in a 7 day launch your blog challenge and this was the final assignment. I know I had done an intro in the past,  but looking back this is a more focused and better composed intro. It is a testament to me that my brain is still healing.

 

Much Love,

Momma Berna

I like Being Told “You Look Good”

I read Facebook groups and blogs for disabilities, strokes & chronic illness. I see posts where a person gets sad or offended when someone tells them “ You look good”. I know there are times when I don’t feel good, I am in a lot of pain or I feel very sorry for myself.  The last thing I would want to hear is “you look good” or “you look great!”.  

In my opinion, when someone says those words they are not meant to be empty platitudes.  Sometimes, folks just do not know what to say.  And more than anything, it is usually said with love & genuine concern. 

I am grateful when someone tells me “You look good”.

I am grateful because it takes a lot of effort for me to get ready to go out. Taking a shower can be exhausting. It takes a lot of time and frustration to get myself look presentable. I am glad when someone notices my efforts. There are days when I am in a lot of pain, and it shows on my face. When someone tells me I look good it means that for that day, at that time I am pain-free.

I am grateful because I work hard on my rehabilitation. I work my ass off to teach my brain to get back to some semblance of my old self. When someone tell me “ You look good” means my efforts are getting noticed.

thankful, grateful, stroke survivor

And I am grateful because I have family and friends who support me, help me get through the tough times and are there to boost me up when I am at my lowest. I look good because I have their love and support to carry round.

I get it,  folks with  chronic pain or chronic illness the words “you look great” could sometimes be hard to hear. Pain is hidden and for most there is no end in sight. We may look good on the outside, but the fear of when the next brain fog, neuro fatigue or nerve pain will attack is always on our minds.

Despite the uncertainty, I choose to be grateful. I choose to see the good intention behind the words. I would like to think that when a person tells me that, he or she means it sincerely.  I choose to believe that good health shows in face and my person. I will say thank you to anyone who sees this and care enough to let me know. 

Have you found gratitude in an unusual place? Please share!

 

 

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