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!
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.
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.
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.
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?
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 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!
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.
It’s the start of the new year and I am sure there are people who have all their resolutions for the New Year in place. I on the other hand, have spent the last month hanging on a limbo of medical insurance quandary. Ah heck, the whole month of December, my family and have spent each day hoping to not get sick, not get injured, not get anything that would need medical intervention.
Don’t get me wrong. This insurance lapse is not due to our negligence. We had expected our COBRA through Armando’s work to end on December 1st, 2016. So we got our crap together. Well we thought we did anyway. Got all my meds refilled, saw the doctors we needed to see and had arranged for private insurance through Covered California. This is the route we have to take since my husband is now working for himself. I was not too worried for myself since in July of 2015, I received a letter from Social Security that although I am not eligible for disability payments, I am qualified to receive Medicare in October of2016. So, I felt confident that I was covered and I was also relieved that we would be getting some financial savings on our health insurance.
So, it looked like we had everything set, right? Well, not so much. On December 3, Scotty had a wrestling tournament and landed on his knee the wrong way. Trusting that we have health insurance, I tried to log in to the insurance website to schedule a video appointment. I tried unsuccessfully logging in a few times, so (I had to resort to making a phone call and (gasp) talk to a real person. That was when I found that none of us were insured. And all for different reasons! I mean what were the chances? Since Armando took care of the boys’ insuance, I was only able to get info for myself. I was confident that Medicare had me covered since I had also had applied for supplemental insurance. Imagine my shock when I found out Medicare will not cover me til April of 2017. I could not get any more info from the woman since she did not work for Medicare. I was hit with a sense of dread. I cannot be without insurance. The sense of uncertainty was over whelming. Since socil security offices were closed for the weekend, I had to wait a day and a half for answers.
Monday morning, the first thing I did was call Social Security. After being on hold for 55 minutes, a woman who seem to be not so interested in being at her job clicked her computer keys for effect as she attempted to “research” my case. When I asked her how come I am not eligible for Medicare until April even though I had a letter that tells me I was eligible, her response was ” I don’t know, I didn’t send you that letter”. I was already on the verge of tears, from frustration, fear and anxiety. To get this type of response was driving me over the edge. The lady was incredibly rude and unconcerned. I asked for a supervisor and the best response she gave me was “let me connect you to your local SS office. So, after another 40 minutes on hold ( my poor brain was already running out of juice), I finally got connected to another rep. I was ready to give her the riot act but her calm manner and caring voice helped calmed me down a bit. she was genuinely attempting to help me.
She looked up my case. She was surprised that I even received a letter stating I was enrolled for Medicare when it usually takes two years and six months after disability to become enrolled. The poor woman was really trying to help, but the office computers were down. She was hoping from desk to desk, I could tell because she was running out of breath! She finally pulled up my file and saw what I was talking about. She was surprised to see that I indeed received a letter which stated October as my eligibility date. Unfortunately, there was nothing she can do about this. It was a Medicare error and I would need to sign up under Covered California at least until April 2017. I am very angry about this. This was an error that could have cost my family financial difficulty. I have no way of finding out who is responsible for this mistake.
Let me take a slight detour here for a moment. Our Social Security System has deemed it necessary for an individual to wait two and a half years after they are determined disabled before they can avail of medical services! I mean WHAT THE ACTUAL FUCK!!! I was fortunate enough to have my husband’s insurance the past two years to help me get the medical services that I needed. Many people get in a tight spot during this waiting period. This sheet explains and answers some of the questions on why there is a need to wait. But what if a person does not have employee sponsored insurance or COBRA coverage? How does one get care? To think that people who depend on Medicare are people on disability and are not able to work full time. Some maybe receiving SSDI and some are not (like me).
We spent the month of December avoiding getting sick or getting hurt. Luckily for Scotty, his knee healed on it’s own. No one had any major illnesses and as far as we know, we have insurance starting the first of January.
I don’t usually set New Years resolutions. I do have goals that I will be working on for the year. The first of which is to complete my first post stroke 10k!
Do you have New Year’s resolutions? Have you had any issues with Medicare or MediCal? Do you think it’s worth the energy to pursue who made the Medicare mistake?
Hope this 2017 brings everyone health, peace and prosperity.