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

Who Takes Care of the Caregivers?

I know family dynamics are never static. No matter how solid a family’s foundation is, changes will happen. The stroke changed my family dynamics in a way not one of us anticipated.

Prior to the stroke, I was the planner of vacations, i driver of the children & the organizer of the things: events, school projects, doctor’s appointments, shopping etc. etc. I was also the finder of lost things. True story: when I was conscious enough in the hospital, one of the boys would ask where some things are in the house. I could from my hospital bed, give them  point by point directions to where the wanted/needed item was. Waze is not even that precise.

The realization that things will be very different when I get home hit me square in the face during family day in rehab. My husband, the boys & my sister were all there. They were being taught the things that they will need to assist me with after discharge.  I would need to be assisted to the bathroom, I will need help in the shower, getting in & out of bed, getting in & out of the car. I also learned from the occupational therapist  that my drivers license got suspended. 

sons, support group, hospital, love,caregivers,carer, rehab hospital, Kaiser rehab
My boys had to grow up quick.

The moment I left acute rehab, my family became my caregivers. With my husband Armando,  my primary caregiver.  He had to dole out my meds & make sure I take them on time (no he didn’t check if I was cheeking my meds), he had to learn to give me my blood thinner shots (thank God that didn’t last too long)  and had to help me keep myself presentable. My kids have to help cut up my food, get me around the house, and get me in and out of the car.  My mom, who should have been enjoying her retirement once again had to: prepare my food, push me in the wheelchair around the house, and generally fuss over me.

I am so very grateful that I had such a strong family behind me. My sister pitched in whenever she can, my in laws came by to help out.

It is a lot of  physical & emotional work being a caregiver. My job was to get well, rehabilitate and rest. Everyone else around me still had their regular lives to live. They still have jobs, school and homelife.  

If you are getting nursing assistance from an outside service, thank your lucky stars. For most people, it is family that takes on this role.

Armando being my husband/nurse has it’s up & downs. There are times when I can sense that Armando was being stretched too thin.  He will not openly admit it, but after 20 plus years with him, I had gotten good at reading him. Before he gets to the breaking point, I kick him out of the house.  I just want him to get a break. Get out of the house, hang out with friends and do guy stuff.  

One of the pitfalls of having family, specially your significant other, be your caregiver is the lines of your relationship becomes blurred.  He wasn’t just a husband, a friend, a lover any more. He was also my nurse. He was responsible for my physical & mental well being.  This past two years and a half years have put us  through the ringer. There are times when Nurse Armando was around more than husband Armando which led to resentment.  As I become more independent, Armando and I are slowly rebuilding and redefining our relationship.   We now go on regular dates, laugh like we used to, fight like we used to and talk like we used to.

llife companion, caretaker,rehab
Race walking together.

He is slowly moving away from the caregiver role and back to  the husband role. He of course still takes care of the boys and I the majority of the time, I can’t complain…erm… I am grateful to wake up mornings with homemade (not out of the box) blueberry scones.  We are talking about travel plans and not just treatment plans, we are focusing on healthy habits and not just taking my meds on time.

Life is definitely far from normal. I am still moving slow, I still need help doing things in the kitchen, but I am able to manage.

Our caregivers only want what’s best for us, but they must not ignore their own health and well-being. Caregiver burnout is detrimental to both the patient and the carer. Depression, anxiety and physical illness could be  manifestations of burnout. (Get more info here)

 

To other survivors out there, how have your relationship changed with your caregivers?

To the caregivers, how do you practice self-care?

Much Love,

Momma Berna

I Hit Send

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 😉

 

Much Love,

Momma Berna

 

Fear of Missing Out

I wish I could exude positivity all the time. I try to, but it isn’t easy. There are just days that the bad becomes ever so overwhelming that I feel that a huge dark cloud comes over my life waiting to swallow me up.

So here it is,  the dark cloud that has been brewing in my broken brain for a few months now. Keeping these thoughts stuck up there is not doing me any good. I AM ANGRY. Life is passing me by and I am too slow to catch up to it. I see my friends enjoy their weekends, hanging out for long runs, and running races.  I am happy for them, but real sad for myself. I want to be out there running, be at the gym working out hard, sweating like a sinner at church. I try to stay out of social media on the weekends to avoid seeing all the fun everyone else is having. The fear of missing out (fomo as the kids say it), is very real.

I am also missing out on the life of my boys. They are now at the age where we can go out and have fun adventures,  instead they have to slow down to my pace which I am sure is very frustrating for them.  I feel that I am not as present for Scotty as I was for Vincent. I knew most of Vincent friends as I used to drive them around everywhere. With Scotty, I hardly know who he hangs out with.  The three of us used to just jump in the car, go to the store, argue and work things out. I really miss those days. mising out

I also am sad that Armando and I are not enjoying our time together as we had planned. We go out on dates, but he ends up going into his caregiver mode when we are out because he worries about me.  I also end up getting frustrated because things that used to be easy, are no longer.

couple. love, true love,
Happier Days

I am missing out. I will miss out. The fear is real. That makes me angry.

Thank you for reading through my vent. If you have stuck it out this far, I would appreciate your thoughts & feedback!

Much Love, 

MommaBerna

The Stroke Survivors Club

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.

family, strong family, stroke support,
Nothing beats the support of family.

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.  survivor strength, survivor strongNo 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.

Much love,

MommaBerna 

Hot Chocolate, Cold Weather

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

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

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

The yummy post race treat!

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

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

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

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

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

Much Love,

Momma Berna

This bib will go unused. Sad face.

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