First Trip and an Ambulance Ride

 

This past Saturday was supposed to be a nice, quiet day. We went to my aunt’s surprise 70th birthday party, had tons of food and enjoyed some family time. Once home, we all decided to do our own things. Scotty had a birthday party to go to, Vincent was passing time playing video games before he picked up his girlfriend. Armando had gone to see Star Wars:Solo.  I decided to clean the closet in the office. I have been in a purging mode lately.

So there I was emptying bags, sorting things out for selling, recycling or trash. I was about to throw out an old box when I felt something in it. It was a piece of medical THC in candy bar form. I would make a sucky addict coz I had completely forgotten about my “stash”.  I’ve had some of the candy bar before, but just small pieces and all it did was help me sleep. I had just taken my evening meds, and my dumbass decides to have some “candy”. I have never been high (shocker, right?) so I thought maybe I’ll try a bigger piece (about the size of a Hershey’s square) than I had taken before. It took awhile to kick because I kept cleaning and organizing.  Then whoa! The tunnel

Only a real friend would text something like this.

vision kicked in. I did not know what was going on, so I sent a friend a text “what does being high feel like?” We texted back and forth, then everything got fuzzy. It was as if I just off a tilt-a-whirl, while blindfolded with sheer gauze and then given a few shots of tequila. I remember going to the kitchen to get water thinking that would help. I started to panic. I was home alone, I remember looking for the rest of the candy bar to show the medics in case I was overdosing (yeah, yeah I know…). I called Armando to ask him to come home. I was scared. All he heard was the slur in my words and he rightfully panicked. 

I was fighting hard to stay awake, when the medics rushed in all I heard were “stroke”, “survivor”, “smile for me”  “lift your arms”. They were assessing for stroke symptoms.  There were so many things happening all at once. I was screaming for Armando, I was screaming for my kids. In the ambulance, one of the medics was inserting an IV  line says “this is just a little prick” of course I responded with “that’s what she said”.  I truly do not remember the rest of the ambulance ride. I apparently kept saying I was in a time loop or I was detached from my body. I think I said “it’s a good thing I am wearing nice panties.” 

When high, take a selfie!

In the hospital, They ran me through a CT scan which thankfully did not show a stroke. Armando later told me I was saying stuff like “don’t put me on life support” “this can’t be happening again” and “I’m in a time loop”.  I told one of the nurses he looked like Chris Pratt.

At some point, I must’ve told them that I had THC. Armando, understandably was pissed and relieved at the same time. The boys thought it was funny and asked why didn’t I share. My sister was there too.  I had just put my family through an ordeal we all just dealt with a few months ago with my mom’s stroke.  

I kept going in and out of moments of lucidity. I would close my eyes and wish that when I open them, I would be at home in bed.  I remember asking the doctor “this is the real world, right?” A nurse asked me if someone slipped me something at a party. I told him, the party was for my 70 year old Aunt, and we came home at 2 P.M. Reality started to come back, slowly and then with a vengeance.  The doctors and hospital staff definitely changed their attitude once they learned I had used pot and not had a stroke.  It went from caring and compassion to that of annoyance and irritation. At 4:00 AM, they sent me home.

I feel so much guilt, shame and embarrassment  from this whole incident. I have profusely  apologized to my family for what I have put them through. I honestly do not think I could apologize enough. 

I had high hopes (no pun intended) for pain and spasticity relief through THC. That unfortunate first trip caused me to be put off trying it again.  

Much Love,

Momma Berna

Disclaimer: This piece is based only from my experience. I neither condone nor condemn the use of marijuana.

Mother’s Day

When my mom passed away, my heart broke and a part of my soul also died with her. This was the this was the first Mother’s Day without my mom. In the past years, my sisters and I would wrack our brains to come up with a “good” present for our mom. We would come up with then  reject ideas: money (she’ll just give it away), A nice purse (she has tons of them),  a gift card (she has tons of stuff!). We usually end up getting her something impersonal, but felt she needed. A DVD player, Filipino movies etc. This year there was no discussion, no decision to be made. We only had one gift we could get. Flowers for her grave site.flowers, mother's day, mother's love,

I felt detached from everything this Mother’s Day. My sister and I didn’t even arrange to meet up. I feel that was an unconscious decision for both of us.  I know on my part, I was trying to not fall into pieces. When my boys and I went to take flowers to the cemetery, it felt surreal to me. Her name has not been engraved on the headstone yet which made it feel unreal.

I still have moments when I hope that she was only on one of her church group trips. She would go with her Handmaids of the Lord group to different states. During her services, her friends shared that my mother would laugh the loudest in their group. My mom who asked repeatedly how to use “the Facebook” had posted tons of photos from those trips.

I miss her so terribly each day. Little things would remind me of what she did for us. We never had an empty sugar bowl when she was around.  She knew what my favorite meals were and she made them so we can eat together. I regret that the last time she made lunch, I had gone somewhere and wasn’t able to get home on time. She called and left me a message saying she already ate coz she got hungry waiting for me.

The boys and I will miss her hot bowl of chicken mami (Filipino chicken noodle soup). That she lovingly prepares for us as a welcome home after we have gone on vacations. She would call to find out how much longer it will take for us to get home so the soup would be nice and hot when we get there.

At the Sports Center, on a day I was able to drag her out to walk the track with me.

I did not appreciate many of the things she had done for me. Caring for me after the stroke, worrying about me going up and down the stairs (she always turns on the stairwell light no matter what time of the day it was). One night, I was having a truly bad stomach ache. It was only her and Scotty home with me. I was hurting so much I was screaming. I was not getting relief from any medicines, so she turned to her time tested cure: prayer. She rubbed blessed oil on my back and tummy while saying a prayer. When she walked away to go back to her room, I called her back “mommy” and she came rushing back.

I was not a model daughter. Our relaionship was fraught with disagreements and arguements. I have hurt her feelings many, many times. I have made her cry, many times. I hope she forgives me. I hope that I made her proud.

My 76 year old mom’s first water log ride. She is seated between Scotty & Vincent.

I regret that I didn’t hug her more, I regret that I didn’t sit with her at our front porch bench when she hung out there in the mornings. I regret making her sad.

Stroke Walk, Rose Garden San jose, San Jose
Last year, she joined us at the stroke walk.
This year, we walked in her memory.

                   

In Memoriam

Stroke has taken so much from my family. Our lives changed drastically after my stroke in 2014. Things were finally smoothing out for us, until March 12, 2018 when a  stroke took away my mom.

My mom’s death was unexpected. She was fine that Saturday March 11th. We sat around the table with my sister eating yummy pastries. She talked about going to Florida to visit her sisters (A and I had already planned on buying her the airfare as a  birthday present). My boys and I had gone to a birthday party that evening and when we came home, my mom was telling us how Twinkie kept her company by sitting outside her bedroom door(what she didn’t know was that she was the one making the dog feel safe. Twinkie does not like being alone). As she was getting ready for bed, she reminded me of the time change the next day. She said good night. I said “thank you and I love you”. I don’t often tell her “I love you”, but I am glad that I did that night. She went to bed with a smile on her face.

The next day, everyone had a slow start. We ate breakfast around 11, it wasn’t unusual for my mom not to join us for Sunday breakfast as she watches/attends the Catholic mass on T.V. My husband and I were getting ready to go to the gym when we heard my mom coughing. Her coughing just sounded wrong, it sounded as if she was drowning. We asked Scotty to check on her. He was calling out “Wowa,Wowa” (the kids’ name for their grandma) and he sounded panicked so I rushed over to her room. The second I looked at her I knew she’s had a stroke. She had all the signs. Armando called 911. She wasn’t swallowing her spit, so Scotty propped her up on her side so she does not get water in her lungs.

At the hospital, the CT confirmed the stroke. She was placed in the ICU, we were hanging out with her and relatives visited.  My mom was awake and knew where she was, what day it was and recognized the people who visited her.  Doctors performed all kinds of tests. We were told she had an ischemic stroke and she was experiencing atrial fibrillation.  They were going to keep her in the ICU for observation, but they were cautiously optimistic. That 5 A.M. phone call was a shock that  still reverberates through my bones.

My mom lived with my family, so her absence is deeply felt.  On one of the days leading up to her funeral, I knocked on her bedroom door before I entered. I was going in there to get the clothes she would be buried in.

On the night of the rosary and vigil, we delivered our eulogies. I kept mine short because I know I would not have been able to keep it together. Here is the eulogy in its entirety.

Before I begin, I would like to thank everyone who came here tonight. Thank you for your support and for honoring my mom’s memory. I hope you’ve all had a chance to share stories and good memories.

Many if not most of you know of my mom’s generosity. She would give and share until she had little or non left for herself. Her favorite thing to share is her cooking. She would cook enough to feed the neighbors and she did! She cooked for her boys, she knew their favorites and would make it for them if they asked or even if they didn’t.

My mom was also very stubborn. I had asked her to stop doing her apos (grandsons) laundry, but she still did. She also cleaned up after them. It was part of her morning routine to turn off the bathroom lights and the light in Scotty’s room. She would also go in the boys’ room to make their beds, collect any cups or dishes (the boys are not allowed to eat in their rooms, so I think she did this sweep so I won’t yell at the boys.) She also did their chores and gave them money. I guess it is a grandma’s well earned right to spoil their grandchildren. She fed the cat. A lot. She also loved to buy Filipino pastries. I’ve asked her over and over to stop as it is unhealthy. She bought them anyway and we happily ate.

The one quality my mother had that I never appreciated was her strength.  In contemplating her life, I now only realized the sacrifices she’s made for my sister and I. In 1989, she gave up her career as a dentist to immigrate to the U.S. Her and my dad gave up the comforts of their lives, friends and jobs so that my sister and I could have a better future. The help of generous relatives helped relieve some of the uncertainty we were facing. My mom secured a job at a semiconductor company where she worked from 6 PM till 6 AM. This job allowed us to move out of my aunt’s house and rent an apartment in Milpitas. My sister and I were both going to school and working, but not once did she ask for our financial help. She even gave me the money for a downpayment for my first car. She never learned how to drive, so when my dad passed in 1996 she not only lost a husband, a best friend and a partner. She also lost her chauffeur. I was starting my own family, so I was not available to drive her around too much. She had to learn how to take the bus. She had just taken the bus to a doctor’s appointment the Friday before she passed. She was giving me lessons on bus routes!

Her true strength came through when I needed her the most.  After I had a stroke in 2014, my mother was instrumental in my recovery. I am sure that she never, ever thought that she would have to help her grown daughter use the bathroom. Or that she would have to help me clean up because I did not make it to the bathroom in time. She bathed me as I cried out of humiliation and self-pity. She had to cut up my food, help me get dressed and remind me to exercise. I know it took an incredible amount of strength for her to keep it together as she helped me build myself back up. I will never forget the look of pride she had as she watched me take my first steps. Even as I am fairly recovered, she still hovered over me. She was always hesitant leaving me alone. She would ask what time one of the boys will be home before she leaves the house. She stayed up with me when I was up till late watching T.V or writing. She calls to check up on me when I am out walking alone or when she’s out of the house and no one is home with me. My mommy protected us fiercely. Loved us wholeheartedly. Gave generously.  Her life maybe gone, but her presence will always be with us.”

goodby grandma,goodbye mom
My boys helped carry their Wowa (grandma) to her final resting place.

It has been a difficult couple of months and I am sure it will not get easier anytime soon.

Much Love,

Momma Berna

 

 

Aftershocks

Earthquakes happen suddenly, with no warning and if strong enough, leaves massive destruction at its wake. Then the aftershocks follow. Little tremblers that are just as nerve wracking as they could be signaling another big one.

I use this analogy because this is how I felt after the stroke. I get anxious whenever I get a headache or a tingling in my hands or feet. Afterall, the stroke literally caused a shift in my brain.

Post Traumatic Stress Disorder  (PTSD) has always been attributed to veteran soldiers returning from the harrowing experiences of war, survivors of tragedies such as accidents, personal assaults and natural disasters. What most don’t realize is that there are stroke survivors who also suffer from PTSD.

PTSD is a psychological disorder characterized by depression, anxiety, flashbacks and/or nightmares.  This study indicated that 1 in 4 stroke survivors suffer from PTSD and yet, it is not a well researched field. Stroke survivors often have huge physical recoveries to tackle, their emotional health is often put on the back burner.

When I was discharged from the rehab hospital, my family was given resources to help me recover physically. Appointments and referrals were set up for physical, speech and occupational therapy. Medical pros had to check my home to see if it was accessible to me. My family was even “trained” to help me transfer in and out of my wheelchair. They were given information on how to keep me physically safe. I  do not recall if my family was ever warned of the psychological toll specially PTSD.

FAST, stroke survivor, stroke, stroke prevention
Act FAST for stroke treatment

The stroke was caused by a blood vessel that burst which flooded my brain with blood killing precious brain cells. This according to the pros, was a direct result of high blood pressure. Armando and I became vigilant about checking my blood pressure.  If it was a bit high, I start panicking- which resulted in my pressure going higher. It was an ugly cycle. Every headache was surely a sign of another stroke. I would do the FAST (face, arm, speech, time to call 911) evaluation, but would be very upset because I cannot move my left arm, the left side of my face was numb and so was my leg. It was aggravating. I took a couple of ambulance rides to the ER only to be sent home embarrassed and upset. And inadvertently scaring my boys.

I read somewhere that lifting weights could cause strokes. I immediately emailed my neurologist, my primary care physician and  my physical therapist my concern. I was working with a trainer and weight training. They all told me to chill the fuck out (okay, in a very medically polite way) Mind you, I wasn’t lifting anything over 10 lbs. I could not even hold a 5 lb dumbell with my left hand. Ha!

After three years, I have managed to calm down. I still fear that a headache (which I don’t get often thank God!) is signaling another stroke.  I have a nagging fear that I will have another stroke and that one will leave me in a vegetative state. These little aftershocks haunt me in my dreams too. I relive the moment I had the stroke and I wake up screaming. Will I ever be able to NOT think about another stroke? I doubt it.  This is a reality I now live with.

However, I will not allow these aftershocks to stop me in my tracks. I take many precautions so that a stroke will not get me again. I eat healthy, exercise and avoid stress (yeah, that one is not happening).

For anyone reading who is a stroke survivor, please know that the fear of having “another one “ is not irrational. The anxiety is very real. Our fear is valid. Know that you are not alone.

Much Love, 

Momma Berna

Left Frustrated

The moment I was able to flip the bird with my left hand again felt like victory and awesomeness.

When my brain broke, I Iost the use of my left side. The technical term is hemiplegia. It is often referred as one sided paralysis.  My left arm, shoulder and hands clung to my side tightly. It was painful to even try to move. My fingers were in a closed tight fist so thst my nails were cutting into my palm. Spasticity keeps my fingers stuck together as if they are bound by a thick rubber band. 

It is incredibly frustrating that very simple things are so very difficult to do. Getting dressed, eating and even holding a book became impossible (thank goodness for Kindle). I had to learn a new way of dressing myself, how to put on a bra – ladies, it wasn’t easy nor was it pretty. Getting tangled in my own bra was quite interesting. 

At first, I was embarrassed to ask my boys or my husband to cut  up my food. I would have gone hungry.  I’ve learned to order food that does not require any cutting when I am out with friends, I did not want to ask them to slice up my dinner for me. Eating a sandwich is still tricky and messy. 

I am right handed so I thought that not having the use of my left would not be a big deal. Wrong!  I took for granted how seamlessly my shoulders, arms and hands worked together. I live the metaphor “with one hand tied behind my back”.

Three years post stroke, I still have a long way to go for my left hand to be fully functional. I do a lot of stretching, weight bearing and fine motor skills training (picking up small and large objects etc.).

Looking back, I have made major improvements:

  1. I am able to tie my own shoes again! Youtube has multiple videos of one handed shoe lace tying, but they are more complicated than I preferred. I had elastic, no tie laces which were very helpful, but I wanted to tie my laces on my own. Who knew that at my age (don’t ask), I would celebrate being able to tie my own shoe laces!
  2. I could now keep my fingers open. This is great because: I am not hurting my own hand anymore, I could cut my own nails without someone else prying  my hand open. I could get manicures! I could even cut my right fingernails with my left hand. With some modifications.
  3. “It puts the lotion on it’s skin” that’s with my left hand on my right arm.
  4. I am now able to use a can opener. The manual one. I won’t starve anymore. YAY!!!
  5. I could open a bottle of wine! (this should be number one on this list).
  6. I could turn the door knob with my left hand.
  7. I am now able to lift my arm up to my ear and hold it there for a few seconds without assistance.
  8. I could fold laundry (sshhh, let’s keep that on the d.l).
gym hair, pony, left hemiplagia,stroke survivor hair, pony, long hair,
Gym pony by the hubby. He’s good,right?

There are many things that are done day to day that for most of my life I have taken for granted . Just combing and putting my hair in a ponytail takes the coordinating action of my shoulder, upper arm, lower arm, hand and freely moving fingers.  My husband has gotten really good at putting my hair up. He still needs to learn the fine art of French braiding, I also need to get my boys trained at this skill. I am happy to say that both of them have learned how to help me with my jewelry. 

  I am still wary around knives. Cutting veggies is scary when at any time my left fingers could slip right under the blades of a sharp knife.  

Typing is literally a pain.  Typing with one hand is slow and tedious. Typing with one hand and having a crappy short term memory is very, very frustrsting.  I am using this program to improve  my typing skills, right now I am up to 10 words a minute! WOOHOO!!!  I looked into speech to text software, but the price tag left me…umm…speechless.  

I have been stuck with the idea that using adaptive equipment means I am giving up. Lately, I am realizing things would be less frustrating if I adapt rather than struggle. I would be more self reliant if I use things that could aid me, rather than getting frustrated because it’s “too hard” do things. This  one handed chopping board  is an example.

My accomplishments are small, yet they are the steps that I build on. Eventually, my brain synapses will fire up again and make new connections. It is a long, frustrating road. Imagine traffic on the Interstate during rush hour. Or for my Bay Area readers hwy 880 anytime of the day (emirite??)

 

splint, hand splint, stroke survivor, occupational therapy
My super sexy night hand split. It is to train my fingers to stay straight.

 I  continue to hone my gross and fine motor skills.  My arm and hand moves like an amusement park claw machine. Slow, unreliable and drops things when you think you’re about to get the prize.

 

Much Love,

Momma Berna

 

Low Heels, High Expectations

I love shoes. I would switch between sexy heels and sweaty running shoes.  Nowadays, I live in Tom’s canvas shoes and since it’s winter, I get to wear boots with the fur (enjoy that earworm. You’re welcome 🙂 )

My husband and I were invited to a birthday party. I wanted to get all dressed up. I ordered myself a form fitting dress and feeling brave, I picked up a pair of not so high heeled sandals. I practiced walking around the house and I did fairly well. I was able to keep my balance and my left foot felt strong.

The day of the party came. I got my hair and face done, squeezed myself into my dress and strapped on my shoes. As an afterthought, I had my husband bring a pair of my trusty canvas shoes.

We got lucky and found a parking spot about a block away from the restaurant and club where the party was happening. By lucky, I mean we had to drive around downtown for an hour where every parking structure and over priced lots were full.

 Walking on the sidewalk  is a whole different ball game than walking around the house. I was very, very wobbly.  I was grabbing on to my husband’s arm as if my life depended on it. It did. I was trying to walk gracefully, but it was not happening.

As we walked in the restaurant, a few people were staring. Looking at my feet, looking at me and shaking their heads. Since I really do not have any visible damage from the stroke, wobbling the way I did and having a death grip on my husband made it seem like I was drunk. I knew people were looking and judging. I kept walking knowing I have good friends, good food and good champagne waiting.

I headed to the bathroom after dinner, my foot at this point was done.  Walking really poorly, I managed to roll my ankle and I heard a slight pop. Panic set in and I was leaning on my husband not wanting to put weight on my foot. That was when two young women walked out of the bathroom.  They stared, whispered and giggled. I was visibly upset thinking that I had sprained/broken my ankle. Armando led me to one of the chairs in the lobby and the two young women were standing by the elevator still giggling, phones out. I’ve had enough. I told them loudly “I am not drunk” (which on hindsight made me sound like a real drunk).  I was about to tear them a new one, but my husband stepped in and diffused the situation. I was in pain and I was scared that I had broken my already weak ankle that I have been working so hard to get stronger. I was upset that there are people who would laugh at another’s suffering.

What happened to kindness, empathy or sympathy? Was I expecting too much? I was obviously in pain and was distraught and the young ladies quite possibly were sharing my situation on their social media. When have people become desensitized to another’s pain that instead of offering comfort, they offer social media fodder. The amount of “likes” and responses validates the poor behavior. I got over the judging looks and whispered remarks, heck I know I looked drunk and wobbly. What bothered me is that there are people out there who callously would laugh about someone else’s pain. Finding validation for bad behavior will only encourage those young ladies to find their next “victim”.  There were many opportunities for someone to show kindness that evening.  A kind word or a sympathetic smile would have been sufficient.  

laughter, expectations, party
Still Standing

Thankful that I brought my reliable Tom’s and my foot was not broken, I was still able to hobble and I still looked hot (or a hot mess)  at the party. It was AH-MAY-ZING!!! The music was heavily 90’s and the dancing was fun. Drinks were flowing and the company great. Lots of laughs and shenanigans ensued. One of the advantages of having a crappy short term memory is that I temporarily forgot about the ugliness at the restaurant and I enjoyed the party!  My husband and I had a much needed night out. 

Hope the New Year brings you joy, love and kindness!

Much Love, 

Momma Berna

high expectations, low heel,
The Aftermath
Bad Shoes
The evil heel!

Thank You and Thankful for You

Thanksgiving week is over, I hope that everyone enjoyed platefuls of turkey and stuffing followed by a tryptophan induced nap and have survived the annual mass hysteria known as Black Friday.  In the spirit of gratitude, I’d like  to give a

online shopping, friday, gratitude
How I Black Friday.

big shout out and a big thank you to the people who support, help and encourage stroke survivors and other survivors to lead more productive, healthy and thriving lives.

I am fortunate to be surrounded by amazing family who are also my caregivers: My husband, My children, my sister And my mom. My mother and sister-in-law also give tremendous help and support.

Caregivers give so much, it seems impossible to tell them how much they are appreciated. Material things will not be enough to express our thanks. I know this list is short, I have wracked my brain for answers and I cannot seem to come up with something that would be able to truly express my gratitude.

The Turkey Trot has become a family tradition. The family that wobbles together… The boys run, the husband & I wobble.
    1. Say what you mean. Our caregivers are not mind readers, we sometimes feel that they “should” know what is it that we want or need. Try not to say things like “it would be nice if I had a warm blanket” or “ Is there anyone here who could get me some water?”. It might be hard to ask, specially for the simple things we used to be able to do. But being direct, but polite eliminates a lot of misunderstanding and resentment.

2. Give them space. The first year after the stroke specially the first six months, I was worried about being left alone. I also did not like going outside. My family was held “hostage” by my fear. Armando, my husband was still working full time, so he would put in 9 hour work days, then come home and take over for my mom to care for me.  The boys were busy with school, so they help out when they can. Armando was essentially “on” 24/7.  He needed a break. I managed to kick him out of the house to hang with friends before he burned out. Since then we have learned that having some time for ourselves is essential for our sanity. He now works from home, so getting some alone time is even more important. The people who take care of us, must also take care of themselves, be it some time at the gym or going out with friends.  Time when they can just breath and relax without  having to worry about pain levels, medications or cutting up food. 

3. Encourage them to join a support group.  As much as we need support and other people who understand & know how we feel, our caregivers need the same. They need other people to be a sounding board, to get new ideas from and most importantly a place where they could bitch about us (Ha!).

4.Give your recovery your best effort. We all want  to get back to our normal lives and to be able to do things on our own.  Our caregivers want the same for us. Armando beams with pride when he sees me working out or doing physical therapy. I know in my heart he is happy to see me working hard and trying. He posts more photos on Instagram than I do!  Our loved ones our caregivers have invested a lot of time with us and for us. I feel that watching us work hard, putting in the effort and slowly make our way back to recovery is as satisfying to them as it is to us.

5.Say “Thank You”. Seems obvious, I know.  But there are times I forget or worse yet, I take their help for granted. Sometimes I get caught up with my deficits and self pity I fail to see how much my family does for me. Our caregivers give us the support we need: emotionally and/or physically. Express gratitude often and openly.  This simple phrase means so much.

I know this list is short and inadequate. I cannot come up with anything that would be able to truly express how grateful I am. Do you have any ideas? If you are a caregiver, what is it that you would like?  Please let me know in the comments!

 

Much Love,

Momma Berna

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