stroke blog Archives * Page 2 of 2 * Survived to Thrive by 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.

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

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.

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.

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

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.

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

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

To Have and to Hold

After working a six hour shift slinging McBurgers, my mom and dad came to pick me up from work asking me to hook them up with a couple of Mcsandwiches. So, I walk back in the restaurant as this tall goofy boy was hanging up a handwritten sign that said “.99 hot Fudge Sundays” I stood there trying not to laugh, when the other person who was behind the counter asked me, “do you see anything wrong with this sign?” I was a new employee and to be quite honest fresh off the boat and quite shy and timid (imagine that) I did not want to make anyone angry at me. But being the big nerd that I am I answered, “Other than the bad hand writing? I don’t think we are selling the day of the week”. The tall, goofy guy looked at me, rolled his eyes and flashed a brace filled smile. I got my sandwiches, and as i was walking out Goofy guy asked if I wanted to go out sometime. I was a product of an all girl’s Catholic school and I have never, ever been on a date before. I must’ve stammered something coz he gave me that smile again while he held the door open for me. A couple of chaperoned dates later (my dad would not let me go out with him unless we were chaperoned), our McRomance blossomed. That was twenty five plus years ago.

I can honestly say, we have come a long way from saying “would you like fries with that?”. Both of us worked our way through school, Armando earned his degree in Political Science from Santa Clara University, where a few years later, I received my Masters Degree in Counseling Psychology. It was fitting that we had our wedding at the beautiful Mission Santa Clara. This past August, we celebrated our 20th wedding anniversary. The twenty years were spent raising two boys (Vincent-18 and Scotty-15), Armando served as a Milpitas Council member for 12 years while helping the San Jose mayor balance the budget and I have been a case manager and counselor for the homeless, for schools and i’ve also worked as a substitute teacher.

Our marriage is not all about roses and rainbow, there had been storms along the way. But no one could have ever predicted the level F-5 tornado we would be facing in October of 2014. Armando sat by my bedside night after night while I was in the hospital. During the day, he went home, took care of the boys, then went to work. In the evening he came back. He read to me, told me about the day he and the boys have had. He did this even as I was asleep for long periods of time.

Armando, the goofy dude who misspelled “sundae”, has and continues to be the rock that holds me up when I am about to fall. He has more than upheld his end of the vows we promised each other on August 10, 1996. I know I sometimes forget to say “thank you” and I know saying “thank you” is not nearly enough. My emotional survival and physical recovery would not have been possible without him by my side.

Often, the person who is sick or is recovering from an illness gets all of the attention from family and friends. Their caregivers do not get the love and attention that they so well deserve. Armando has given up so much so he can support me. I would not have made the progress I have now if he wasn’t by my side. He has picked up the slack in terms of getting the kids to school, keeping up the housework, taking me to doctors appointments and making delicious meals! He gets tired, he gets frustrated and yet he continues to be strong not just for me, but for the boys too.

Much Love,

Momma Berna

My Broken Brain

There are two types of strokes: The ischemic stroke, which is when a blood clot forms somewhere in the body and the clot travels to the brain. The clot then blocks that part of the brain from receiving blood causing the stroke.

What I had was a hemorrhagic stroke. A vein in my brain burst which caused blood to leak . The blood then caused parts of my brain to be deprived of oxygen causing permanent damage. I was told that my brain became so swollen that it had shifted from its original position. I did not know this at the time, but the doctors told Armando that if the swelling did not go down, they might have to open up my shull (craniotomy) to relieve the pressure. They also told him, I might not survive that surgery. Thankfully, that did not happen. But I was still left with a broken brain. I have both physical and cognitive damage from the stroke.

The brain fog is really tough to deal with. Imagine waking up one day and all the colors and sounds around you have taken a very dull edge. If you are nearsighted, please remove your glasses. I know that you are now struggling with seeing things that are far away My brain now has a difficult time processing more than one sensory input at a time. If I am reading or watching something and someone starts talking to me, I would have to turn off the television or put down the Kindle for me to be able to understand what the other person is telling me. Sounds can either be too loud or too soft, my voice will sometimes be too loud or too soft.

The stroke also threw my emotions off balance. My emotional filter is gone. I feel so bad for my family as anything they say or do could send me into a crying jag or a fit of anger. It was also hard for me to feel joy. That was devastating. There were so many things that I should have been happy for but I could not feel that light, joyful feeling in my heart. I often wonder, did the stroke damage my “happy” center?

I still have trouble using my left arm and hand. It is the same with my leg. There is a miscommunication between my brain and my muscles. I describe it this way; “my brain speaks English, while my left side all of a sudden spoke only Mandarin.” They could not understand each other. My physical therapist told me I should trademark that phrase. It is a simple but effective way to describe the damage that I have on the left side of my body (hemiparesis).

I work very hard to get back all that I can physically and mentally. I know I am making progress. For now, these are the things that I really struggle with:

I have a short attention span. If I am talking and I get interrupted, there is a chance that I will not be able to continue or remember what I am talking about.
I sometimes know what I want to say, but cannot immediately find the words.
I may ask you for the same information more than once. My short term memory is finicky at best. On the plus side, I am an excellent secret keeper.
I still get tired very easily. What’s a simple task for most people takes more energy for me. Not only physically, but also mentally. I cannot walk and talk at the same time. I will either trip or lose track of our conversation.
Loud noises and crowded places zap my energy. This is getting better. I am thankful for that.
My emotions are a mess. I get easily hurt by things that should not matter. I am getting better at this, I do not like that I had my family was walking on eggshells around me.
Chronic nerve pain (neuropathy) is a constant struggle. I could be walking along all fine and dandy then the next minute BOOM, my foot would feel like it is being stabbed by a million hot, sharp pins and needles. My shoulder and thigh are also affected by this pain,

On October 28th, it will be two years since I’ve had a stroke. I believe I have made some incredible recoveries. However, I still have a very long way to go. So I keep on working, I keep on researching for new ways to improve, new treatments available, and of course good old fashioned hard work. At the same time, I will live my life fully and love whole heartedly.

Much Love,

Momma Berna

East Bay 510

The East Bay 510k was the final race of this year’s Run the Bay series. As usual, it was a well organized, well supported event. I’ll start with the free parking close to the finish line and the busses to the start line. That was totally rad! Parking has always been a major stress factor for me during races. So having this perk was very much appreciated.

I love the shout out from the start line, it truly made me feel special. The new course was lovely! it was mostly flat and the waterfront view was very pretty. The kayakers gracefully gliding on the water were interesting to watch. Running through the park which was a nice break from the usual blah views of road races.

This was the first race that I had done in two years where I did not have to hold anyones hand or had to use a cane. I can say that I walked this race all by myself! I have to admit that I didn’t think I was able to finish. I was just not ready! I had spent most of my summer exercising in the pool. Then I had to sit out 7 weeks after I had surgery for the Baclofen implant. And it was warm at 8AM in October!! I was exhausted and disappointed. I thought that my leg would be more cooperative specially after the surgery. It was supposed to make my leg looser, but I have not felt much of a difference. Hopefully a few more tweaks to the amount of medication will do the trick. I was relieved to reach the finish line.

I was feeling sentimental about this race. As I had mentioned, this was the last of the Run the Bay Series for the year. I had so much fun being an ambassador for this series. Represent Running was a great group to be a part of. I do hope that they will the program again next year.

Much Love,

Momma Berna

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

Represent Running

There are many things that I love about running, but the one that I really cherish is the camaraderie and fellowship among the runners. These past couple of years I have been privileged to be a part of a local running group: Team Run The Bay. This team is spearheaded by Represent Running who is the powerhouse behind these three local, fun, and well organized races: the 408k, Across the Bay 12k and 415k and the East Bay 510k.

Being a part of this group has been a spectacular experience. I’ve met some really inspiring, kind and FAST runners. I’ve been accepted into this fold of runners as I hobble/walk my way to the finish line. Hearing the cheers and applause from JT and the team as I reach the finish line, never fails to bring tears to my eyes. Seeing posts on social media from the different ambassadors, is very inspiring. I may not have most of the other ambassadors, but I feel that I know them personally (sorry for the stalker vibe). To be accepted as a ‘runner’ by this group has really been a privilege as I have not done any kind of running at all these past two years. I had rolled, walked and hobbled instead.

The last race of the 2016 Run the Bay series is happening on October 9th. Run the East Bay and represent the 510. This also completes the Run the Bay Challenge . If you had run the 408k and Across the Bay 415, this is the final race of the series where you will get the extra bling. Join the excitement of the East Bay 510k. Register here! Use code Represent2016BG for a 10% discount.

I would like to express my sincere appreciation to the Represent Running Crew for welcoming me into your fold. I have felt welcomed, accepted and loved.

I am looking looking forward to the last race of the year. And I am keeping my fingers crossed that I would be a part of the team again next year.

A look back: