Let’s talk about doctor’s appointments. No one ever really looks forward to them, they take up a lot of time and we don’t usually get the best news from a doctor’s office ( don’t eat that, lose this, start doing that). So when we head to an appointment, we already some anxiety building up.
Earlier this week, I had an appointment with the Physical Rehab & Medicine doctor. My husband and I left the house one hour before the appointment which was 11 miles away. But this is the Bay Area and the traffic is a nasty bitch. Even with the extra time, we were going to be late. I called the office to let them know. The person I spoke with asked how late will we be, I said about ten minutes. She replied “Oh okay, that’s fine. If it’s fifteen minutes, we will have to reschedule”. We made it and were only five minutes late! Yay! I checked in & was informed that the doctor was running 20 minutes late! Half an hour later, they called me in. As soon as I stepped into the exam room, I was once again told “the doctor will be right with you, he is with another patient.” Really ? Really? I called to tell them we were running late, they couldn’t have told me “ oh that’s ok, take your time. Tell you what, stop by and grab a coffee. “ Instead, I was sat in the exam room for another 25 minutes. I had done some complaining on Facebook and the only magazine in the room was a year old copy of Arthritis Monthly. It was a bad time for me to leave my Kindle at home. I was scheduled for an adjustment of my Baclofen pump and Botox for my arm. The doctor arrived, apologetic. He apologized for being late and he apologized for not having the adjustment machine! There is only one for the Santa Clara area. Hey, I know medical equipment can be expensive, but this is a big hospital system!
I got Botox shots for my wrist & hand. I have to choose where I think it would be most helpful as I can only get so much Botox at a time. The Botox is only effective for three months, so in those three months I have to work, work, work my hand! See, all these treatments are temporary. The hard work of re-wiring is all up to me.
I made another appointment for the adjustment, keeping my fingers crossed they will have the machine that day. Getting to appointments is still complicated as I am not driving yet. The doctor wants to do another assessment.
Thank you for reading through my rant. I know it is WAY too much to expect to get a courtesy call from doctor’s offices to let their patients know that they are running late or them to consider that our time is valuable too.
Have you had an experience similar to mine?
Does your clinic or doctor give you a courtesy call if they are running late?
The Brazen Western Pacific race was my first ever 10k back in 2013. I planned on making this year’s race as my first post stroke 10k. I trained, I was pumped and I was ready. I asked my son Vincent to run this race with me.
I had trained, I walked around the neighborhood, walking up the hill and even attempting runs around the city track. Tuesday before the race, I walked/run 4 miles and I still felt good afterwards.
I posted my flat runner on social media and admitted I was a bit nervous for the following day. I was excited to do this race with Vincent. My plan was to have him run the 10k, finish get his medal and then have him wait for me at the last mile. He said “No, I want to stay and walk with you”. He gave me a boost of confidence! So we line up at the start, took the obligatory start line selfies and off we went! I decided to run intervals for this race. I did not use this method while training, but I figured it wasn’t going to make a lot of difference since while training, I run/walk anyway. I set my Garmin for a 2 min run 1 min walk. Vincent was goofing around (it’s nice to be at the back of the pack coz we had the trail to ourselves!) doing walking lunges during the walk phase on the intervals. Of course that didn’t last very long. Ha!
We kept up with the 2:1 intervals. It was 9:30 and it was already getting warm! I had lots of water in my pack so I wasn’t worried. Vincent & I were chatting and having a nice time. After the two mile mark, a very nice woman stopped me and told me how inspired she was to see me out there. She’s also had her share of health issues and she started crying, which of course set me off crying too! She ran the 10k and was on her last mile. She told me “no matter how long it takes you to finish, the important thing is that you finish!” I had her words in my head for the rest of the race. I had to finish.
My son was very impressed with the kindness and encouragement of the runners. He asked me how I knew all these people, I told him I didn’t know them, runners are just nice like that!
As we approach the turn around for the 10k, my leg started spazzing out. When my affected left leg spasms, it will kick out uncontrollably. I had to stop, stretch out a bit then continue. As with all Brazen races, the aid station was stocked with all kinds of goodies. Orange slices, candy, pretzels everything a runner needs to fuel up. I helped myself to some oranges hoping to get my energy level up again. We headed back. Vincent was getting very worried as I was leaning onto him while walking. I was determined to finish. A few runners were stopping to ask if I needed pain relief, others asked if they could get a course monitor to get help. I really must be looking pretty bad. I urged Vincent to keep walking. I was slowing down, but I wanted to finish. We were at 4.20 mi! (yes, my kid thought it would be funny to take a pic of my Garmin at 4.20)
I keep trying to convince him to continue we were so close! Mind over matter right? Focus on the finish! One step at a time. I had filled my mind with positive self talk (they didn’t work). I kept moving. I was willing my leg to move. I was literally talking to my leg out loud “swing, land on heel, roll to toe.” Since I was using my right to compensate for my left, I started having shooting pains going up my right leg. Vincent was clearly worried. It was nearing 11:30 am and the sun was beating down on us. Many of the runners could tell I was in trouble. Vincent had already asked one of the returning runners to let people the next aid station know that we neeeded help (despite my protests).
At this point, the lines of communication between my leg and brain have completely stopped. My foot was rolling over at every step, my leg was frozen and i was completely hunched over to my right. As hard as it was, it was time to admit defeat. A runner helped my son walk me to the bench. It was clear that walking was not happening. As we sat waiting for help to arrive, I was still contemplating the last mile. It was so close. I tried standing up, but Vincent held me back. I saw relief on Vincent’s face when the ranger’s truck finally pulled up and he had the a/c on at full blast.
As we were nearing the finish area I could hear Sam (the Brazen race coordinator)calling out the names of the finishers, the audience cheering and I could see the happy, triumphant faces of the runners. I was devastated. I had let myself down, my brain worked against me. I so wanted this to be a victory, not just for me but for other stroke survivors as well. I wanted my family & friends to be proud of me. I feel that I had let a lot of people down. The exhaustion that I felt from the race, did not measure up to the sadness, pain and disappointment I felt inside.
Now that a few days have passed since the race, I’ve had some time to think about what happened. Although I didn’t finish the race, I still tried my best. I am grateful to have a 19 year old son who still likes to hang out with his crazy momma. He and I got to witness the kindness of other runners who were willing to help and lend support when we were in need.
I have also received so many positive feedback and support from my family and friends. Am I still sad about this? Yes, I definitely am. I am also still experiencing pain in my hip and shoulder. My brain is still a bit foggy. Neuro fatigue takes a bit longer to recover from.
I am sad and disappointed. But I’m in no way stopping! I might lick my wounds for a few days, rest up the old noggin and come up with a better training plan. There will be another race, another 10k and I will come back!
Thank you, thank you to everyone who slowed down, stopped and offered encouragement, Advil, Bio-freeze and Gu. i know those few seconds mattered in terms of a PR.
I would like to give a special shout out to my son Vincent for putting up with me. We had nice conversations and talked about anything under the sun. He knew I wanted to finish the race, so he tried his best to give me emotional boosts and physical support. He was propping me up, urging me to keep walking. But it came to a point where he knew it was time to just stop. In his gut, he knew I could be in danger. I am grateful to him for looking out for me.
Whew! I’ve had my mailing list set-up on MailChimp for like forever. The email where I invite people I know, people I have interacted with and family members to introduce them to my blog. You see, some of them don’t have face-insta-twit or they are just not a part of my social media circle.
I have had the list set-up, formatted, re-formatted for a couple of months now. I have been too worried to hit send because…well…I am afraid. I am afraid of rejection, I am afraid of criticism etc. etc. But fear will not move me forward nor will it help me get my story out. So today, I clicked send.
But even with just one hand to type and getting seriously brain tired after a few sentences, I’ve got a story to tell! I may not tickle your fancy like E.L James, or give you nightmares like Stephen King (he, is the reason I am afraid of– no why I hate clowns). So if this is your first time here on my blog, welcome. Stay for a bit, I hope you enjoy what you read and come back. If you have visited before, welcome back. I do hope you keep coming back.
Now that I’ve hit send remember I am just a girl, sitting by her laptop, waiting for you all to read my story 😉
I belong to a stroke survivor support group. Recently, one of the members welcomed someone new with words along the lines of; “Welcome to the club, the membership fee to enter is hefty, but you will be surrounded by a great group of people.” What stuck with me were the words “the membership fee is hefty”. It has never crossed my mind that I now belong to the Stroke Survivors Club. I do not remember filling out an application. It is not a club that anyone would willingly want to belong. And yet, here I am. And yes, I paid a high price for my membership. And unfortunately, there are no refunds.
Club membership includes my family. They were recruited and have been drafted to be my helpers. I’m quite sure it wasn’t what they were expecting to be doing at this point of their lives.
The Stroke Survivors Club does not discriminate. All ages, races and status are welcome. And your recovery will be made better with the support of family and friends.
There are some perks. There’s the premier parking spot which comes in handy specially around the holidays 🙂 Kidding aside, this club will help you find out how strong you really are. The challenges you will encounter is not for the faint hearted. No one asked to be in this club. Membership is for life. But you will learn about yourself, you will learn about who you can trust and who you can rely on. You will learn to fight. And fight hard you will. You will fight professionals telling you that you have reached the end of your recovery, you will fight against yourself when a little voice inside you tells you it’s time to give up. You will fight negativity from people around you.
The Stroke Survivors Club is comprised of warriors. We are warriors who have faced great challenges and have found a way to surmount them. And we keep on fighting.
I love the rain. The sound of it as it falls on the roof and hits the window panes, the way the air smells before the rain falls; for me it is the scent of the air preparing to be cleansed. Rain for me is a lullaby, a gentle song that calms my mind.
Running in the rain was a treat. I feel so bad ass when my sweat mix es with rain water. My faithful running partner Twinkie loves it too! She loves splashing on the puddles as do I. So, my decision to sit out the Hot Chocolate Race tomorrow was really hard.
The Hot Chocolate Race is a very well-organized race and running through Golden Gate Park is beautiful! And of course, chocolate! They give chocolate at the course and after you cross the finish line, a chocolate fondue in a cute little bowl! The swag is nothing to sneeze at either: a nice, warm, cozy jacket.
This year, the Hot Chocolate race just happen to be on the same day thata big storm hits. I decided to sit it out for a few treasons: It is a pain in the ass to get there and I am sure it will even be worse in the rain, the park will be muddy and slippery. I usually would not mind this, but my balance is still off and my affected leg has been giving me trouble lately. The cold has literally frozen my leg. Walking has been tough and painful. The choice to DNS (Did Not Start) this race is a common sense decision (yes, sometimes I still use my broken noggin).
I am worried that I would slip, get hurt. and set my recovery back. Sometimes, it is better to just admit that the forces of nature are just more powerful than I am 🙂
I had run the 15k in 2014, skipped 2015 coz I was just out of the hospital, walked the 5k last year, and sitting it out again this year. I am optimistic that I will be able to the 15k again next year.
So, as I sit here in the warmth of my living room, wrapped in my cozy blanket, I am sending out well wishes that all those who braved today’s race, stay safe and enjoy their well deserved post race hot chocolate.
So, it has been 6 months since I had the Baclofen Pump surgically installed inside my body. Yup, had my stomach cut up, and a foreign device inserted to get medicine pumped directly into my spinal column to get my stroke affected leg to move somewhat normally again. This quite invasive surgery had set me up with great expectations. I had that scene from Forrest Gump in my head. You know, the part where Forrest was running from a pack of bullies, Jenny cheering him on with “run, Forrest, run!!!” His leg braces flying off and he takes off! Yup, I envisioned myself running as soon as I got out of the hospital. Reality hit me smack in the face. My leg still felt like it was 20 pounds heavier than the rest of my body. I noticed some improvement. I felt my knee bending, my leg felt lighter ( 20 lbs is better than 30 right?), but running is still proving to be difficult. My foot is still curling in too. I am able to walk faster, and have even tried jogging. I use the term jogging very loosely. My walk is much faster than my jog 🙂 My doctor and I are still working out the kinks. Still trying to figure out the correct therapeutic dose. Too much and my leg will turn to spaghetti, too little and the implant will be pointless.
In late November, when the pump was refilled the Doctor changed the concentration of the medicine. It is now heavier which means I only need a smaller dose (theoretically). He told me that it will take a few days for me to feel the difference. Unfortunately, I did feel a difference. But it was for the worse. My leg has
returned to pre pump status. My leg feels so much heavier and my friends and family are noticing that I am dragging my foot again and my knee is not bending. The nerve pain on my thigh also returned. Unfortunately, The nerve pain has also been really bad on my shoulder. I have been stuck in an insurance limbo this past December, so I am unable to call my doctor for advice and assistance. Read about that mess here:
I am sad that the pump is not working out as quickly as I expected. I would be really angry if it does not work at all. I am still putting on the work: walking regularly, going to the gym, stretching and strengthening not only my leg, but my body.
I am broken hearted. I had that huge goal of running the NYC marathon in 2017. A wise friend advised me to take a step back, analyze my goals and slow my roll. Perhaps, I will start with actually running first. No matter how slow, I will get myself to run again. I need to build my endurance. I need to start training. I need to set short term goals. I know for sure that I will do the 408k in March. I would like to actually run that race. And not take two hours to finish.
As hard as it is, I have to put aside my NYC marathon goal for now. FOR NOW! I will revisit this in a couple of years.
After working a six hour shift slinging McBurgers, my mom and dad came to pick me up from work asking me to hook them up with a couple of Mcsandwiches. So, I walk back in the restaurant as this tall goofy boy was hanging up a handwritten sign that said “.99 hot Fudge Sundays” I stood there trying not to laugh, when the other person who was behind the counter asked me, “do you see anything wrong with this sign?” I was a new employee and to be quite honest fresh off the boat and quite shy and timid (imagine that) I did not want to make anyone angry at me. But being the big nerd that I am I answered, “Other than the bad hand writing? I don’t think we are selling the day of the week”. The tall, goofy guy looked at me, rolled his eyes and flashed a brace filled smile. I got my sandwiches, and as i was walking out Goofy guy asked if I wanted to go out sometime. I was a product of an all girl’s Catholic school and I have never, ever been on a date before. I must’ve stammered something coz he gave me that smile again while he held the door open for me. A couple of chaperoned dates later (my dad would not let me go out with him unless we were chaperoned), our McRomance blossomed. That was twenty five plus years ago.
I can honestly say, we have come a long way from saying “would you like fries with that?”. Both of us worked our way through school, Armando earned his degree in Political Science from Santa Clara University, where a few years later, I received my Masters Degree in Counseling Psychology. It was fitting that we had our wedding at the beautiful Mission Santa Clara. This past August, we celebrated our 20th wedding anniversary. The twenty years were spent raising two boys (Vincent-18 and Scotty-15), Armando served as a Milpitas Council member for 12 years while helping the San Jose mayor balance the budget and I have been a case manager and counselor for the homeless, for schools and i’ve also worked as a substitute teacher.
Our marriage is not all about roses and rainbow, there had been storms along the way. But no one could have ever predicted the level F-5 tornado we would be facing in October of 2014. Armando sat by my bedside night after night while I was in the hospital. During the day, he went home, took care of the boys, then went to work. In the evening he came back. He read to me, told me about the day he and the boys have had. He did this even as I was asleep for long periods of time.
Armando, the goofy dude who misspelled “sundae”, has and continues to be the rock that holds me up when I am about to fall. He has more than upheld his end of the vows we promised each other on August 10, 1996. I know I sometimes forget to say “thank you” and I know saying “thank you” is not nearly enough. My emotional survival and physical recovery would not have been possible without him by my side.
Often, the person who is sick or is recovering from an illness gets all of the attention from family and friends. Their caregivers do not get the love and attention that they so well deserve. Armando has given up so much so he can support me. I would not have made the progress I have now if he wasn’t by my side. He has picked up the slack in terms of getting the kids to school, keeping up the housework, taking me to doctors appointments and making delicious meals! He gets tired, he gets frustrated and yet he continues to be strong not just for me, but for the boys too.
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 it’s 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 head (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 near sighted, please remove your glasses. I know that you are now struggling with seeing things that are far away. You might be able to recognize objects, people or colors but you really have to strain or squint to know who or what they are. Now put your glasses back on, everything is crisp and clear again! If you have perfect vision, well… We don’t like you.HA! Just kidding!!! This blurry, dull version of the world is my new reality. 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 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 (hemipharesis).
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 zaps 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.
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.
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.