Medicare Don’t Care

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 of 2016.  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.

 

Much Love,

MommaBerna

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.

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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. img_0974

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. 13754414_10153747424648457_2194257211736859590_nimg_373510501670_10207772456373748_2374375607510371088_n

Much Love,

Momma Berna

 

My Broken Brain

 

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:

  1. 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.
  2.  I sometimes know what I want to say, but cannot immediately find the words.
  3. 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.
  4.  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.
  5. Loud noises and crowded places zaps my energy. This is getting better. I am thankful for that.
  6. 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.
  7. 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!
Ha! Not sure if this was about me or the weather!

 

A part of the waterfront course.
A part of the waterfront course.

My History of Running

One of my favorite memories growing up was waking up at 6:00 a.m on a Saturday morning and going for a jog with my dad. Our home in the Philippines was very close to the ocean, so that was where we would go. If we get there early enough, we would catch the fishing boats coming in.  My dad knew some of the fishermen, so we were able to buy the fresh catch. Breakfast! During these jogs as i start complaining about how tired I am, my dad would tell me stories about his childhood. This is one that stands out in my memory: My dad grew up in the  Philippines during the tail end of the second world war. The Japanese were slowly leaving their posts,  with a few stragglers still hanging around the provinces.  His older sister and himself would run errands for their mom delivering fish sauce, which my grandmother made, to neighboring towns.The trips they would take were about 5 or 10k one way.  They of course had a healthy fear of Japanese soldiers. So when they see one they would start running.  My dad was around 8 or 9 years old during that time. Sometimes, a kind soldier would give them water. I wish I could still ask him about those days, unfortunately he passed away 20 years ago.

So you would think that with that running history, I would be a natural runner. Ha! When I was in community college, I had to sign up for a a PE class. I chose BEGINNING  JOGGING. Sounds easy enough, right? I thought I was in decent shape: 118 lbs, gym once or twice a week working with weights and aerobics videos at home.  The first day of class, I could not complete a lap. It was more than pathetic than it sounds. I thought I was going to die. The teacher told me I will not pass the class if I could not run a mile. Walking was not acceptable. The second week, I switched classes. Weightlifting was easier. I continued to hit the gym, hop on the treadmill for a few minutes then lift weights. i would joke that running is not my thing, outside is bad. A/C is good.

Fast forward to 2011. We got our Twinkie girl. This yellow lab was a hyperactive beast.  She never walked, only ran. She jumped, nipped and ran.  A friend observed that when I am walking Twinkie, I look like I was on water skis being pulled by a very fast boat. One summer morning, I was out with Twinkie (a.k.a Bootcamp) trying to keep up with her, when she spotted a cat. Cat was too hard to resist, so Twinkie made a dash for it, which led my face to have close contact with the sidewalk.  As soon as I recovered from that nasty fall I decided to start running.

This beauty here is who got me started running. I could not ask for a better running partner.
This beauty here is who got me started running. I could not ask for a better running partner.

On the treadmill at first, (it was summer after all) then gradually outside minus the dog. I started running while the boys were at soccer practice, I actually started to  enjoy it.  Once I felt strong enough, I took the dog with me.  Someone suggested I download an app to track my miles. My question was ” you can do that?” On my birthday, in February of 2012, I took the dog out and we just started running. I was feeling good, she was behaving. When we got home, people were waiting for us so we can celebrate my birthday. I checked my phone and was pleasantly surprised when I read Five miles!  I felt incredible, I felt strong and I felt amazing! I think that was the moment I fell in love-with running. Unfortunately, I do not have pictures of my early running days (I did not know it was a thing. Ha!)

Anyway, I’ve rambled on long enough. I will continue this history lesson on my next post!

 

Much Love,

Momma Berna

 

 

 

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.imgres-2

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:

 

We know the way to San Jose!
We know the way to San Jose!

 

i still needed support and my husband is always ready to give me a hand.
i still needed support and my husband is always ready to give me a hand.

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Pump Me Up

A few weeks ago, I underwent a trial to see if I was a candidate for a  Baclofen pump As the results were positive, I elected to ahead and go through with the surgery. The doctors told me, that there was going to be a two to three month wait to get something scheduled. I was eager, but was not bothered by the wait time. I was going to use that time to work-out, strengthen my core and just get stronger all over, After all, I  will not be able to exercise the way I am used to for 7 weeks after the surgery and there will be no pool exercises till the incision heals (one month).

i will miss Aqua Zumba!
I will miss Aqua Zumba!

One week after the trial, the doctor called and told me that there is an available time on August 25th, a mere three weeks after the trial! I think I mumbled something that goes ” Like, this August? In like two weeks?.” The doctor replied that I can have the rest of the day to think about it and to let him know the next day what my answer would be. I panicked a little, thinking I let go of an opportunity. I talked things over with Armando and we both agreed to give it a go.

The day of the surgery came, we check-in and get settled into the pre-op room. As soon as I get into my hospital gown, the nurse told me that the surgery time was moved forward, The surgery in front of me got cancelled.

I look too happy for someone who is about to go under the knife. The drugs must be working already.
I look too happy for someone who is about to go under the knife. The drugs must be working already.

Waking up, I am now officially battery operated. The battery would last seven years, but I would need a “top off” every few months.

To be honest, I expected to “run”  out of the hospital. I didn’t expect the pain that I was going to be in.  I knew going in that I will be given the smallest dose to start with but it was still disappointing that the result is not instantaneous. It was like opening a much desired Christmas present, but the major parts are still missing. The medicine will be slowly adjusted until it reaches the best therapeutic dose. I now need to work much harder as I have been given a major tool for recovery. I do have to take it easy for a few weeks to let the “equipment” settle into my body. This next few weeks I am only allowed to walk, lift no more than 5 lbs, no twisting and no reaching up, no sit-ups and no jumping. Yikes! I really have to watch what I eat to stay healthy.I will be seeing my physical therapist soon, so I will work with her on safe and effective workouts.

One of the nurses asked me what my plans are now that I have the implant. I had only told my close friends and family this goal:, I plan on running the NYC Marathon in 2017. I will enter the lottery in January, and if I do not get picked through the lottery, I will enter as a fund-raiser.  I heard a saying once (not really 100% sure of the words) that goes “If you let your intentions known,the universe will conspire to make it happen” So here you go universe I have set forth my intention: I will run 26.2 miles of NYC!

Much Love,

MommaBerna

Balance:

I had just finished my balance exercises. Somehow, during the stroke my brain’s wiring got all jumbled up and balance was one of the things that got fried. This is true for many stroke survivors. So as much as I can, I have added balance exercises to my daily routine. I look kinda funny standing in a corner eyes closed, wobbling precariously. Brain rewiring is not a glamorous job.

 

This girl isn’t going to be on a balance beam anytime soon.

Balance has always been elusive to me (heck, I can’t even balance my checkbook. HA) I look really funny riding a bike. My boys always teased me about getting training wheels.  As I relearn how physically balance, I am also learning how to have balance in other aspects of my life.  I am now a much slowed down version of myself, so planning and balance is essential. There was a time where I could get caught up in reading a book for hours. And still be able to be ready to get the boys to where they need to go. Now, I need to be cognizant of the amount of time I do things.  I can spend a good of time reading, watching t.v. or surfing the internet, but those activities will not help me get better. I put in time to workout, write, work on my hand and fingers and stretching (this helps with getting my movement back). I need to once again be a productive member of society.  How do I fit all of these in one day?  How do you keep balance in your life?

Much Love,

Mommaberna

Keep your Hands and Legs Inside the Ride…

I love roller coasters. In amusement parks, I would be the one to coax my boys to ride a coaster. The last time we were at Disney’s California Adventure, I had strong armed the boys to ride California Screamin’ with me. We ended up riding it three times.

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To say that stroke recovery is a roller coaster ride is making a huge under statement. This StrokerCoaster is a ride that I did not sign up for and yet I cannot seem to get off.   There are days when I feel the ultimate high of the first loop. . These are days where I feel strong, energetic and clear headed. These moments could last for days or hours. These are the days that I hope would last forever.

Then there are days when I wake up and I am in so much pain physically and emotionally, getting out of bed is a monumental task. This ride drop sometimes happen when I least expect it. Like last night. I had a great time watching a movie with a couple of my friends. I laughed till I had tears and maybe even snorted a little. On the way home, I got hit with an overwhelming sense of sadness. I was so incredibly sad that when I got home, all my energy was gone. I woke up this morning feeling more positive.  I will try and hold on that feeling the rest of the day.

I know that I will be on this ride for a very long time.  I know there will be good days and there will be bad days. I will try to do my best to appreciate the good days and take the bad days as easy as possible. In the meantime, I’ll sit back, fasten my seatbelt and keep my arms and legs inside the ride at all times.

 

 

Much Love,

MommaBerna

 

 

 

 

Stalled but not Defeated

” But man is not made for defeat. A man can be destroyed, but not defeated” – Ernest Hemingway

The word “plateau” is one that brings fear to athletes. By definition PLATEAU is to reach a state of little or no change after a time of activity or progress.  But for athletes, to reach a plateau in their training means they now have the challenge of having to change up their training. For runners it might be adding hill repeats, adding fartleks to their routine or simply cross training. This are what athletes do when faced with a lack of progress.  They do not see the lack of progress as a time to quit, instead it is an opportunity to establish a new routine so they can better themselves.
Apparently for some doctors, physical therapist and of course insurance companies a plateau is the time to just quit. To give up and lose hope. When i left the rehab facility, the neurologist and the psychologist both told us that I have six moths to regain what I have to regain. After the six month mark, I am just to accept whatever progress (or lack of) I have and learn to live with it.  I have to admit, hearing that was scary and painful. I was not going to accept that I will be in a wheelchair forever.  I was so afraid to hit the 6 month mark, that I worked hard to start walking again.

I had made a lot of progress during the first six moths,but I knew I had a long way to go. I kept working on getting myself better. There would be moments when i felt stuck. I went to my Neurologist with questions. I would ask her for ways to improve, for ways to retrain my brain.

Her response every time would be “You have plateaued. There is not much you can do.”  What I heard was “The insurance company have determined that you are on your own. Good luck”  What I did was researched, asked questions and worked harder. I found out about Botox, acupuncture,E-stim all of which helped. But the work is still up to me.  There has been many bumps along the road. I get frustrated, I hurt emotionally and physically. But I keep going. As much I would like for there to have a “miracle” cure, I know there isn’t one. There are research currently being done on how to rewire the brain, but for now I only have hard work to count on.  It has crossed my mind to participate in different trials and I probably will if I find one that I would feel most comfortable with.

If given the opportunity, would you participate in an experimental treatment?

I will keep asking my doctors questions, I will keep working hard. I have proven doctors wrong in the past and I plan on doing more of that in the future.

Much Love,

Momma Berna