Hot Chocolate, Cold Weather

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

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

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

The yummy post race treat!

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

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

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

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

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

Much Love,

Momma Berna

This bib will go unused. Sad face.

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

 

Great Expectations: An Update on My Baclofen Pump

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

Further proof that I am dragging my foot. I am collecting dog hair as I go.

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.

Getting the pump refilled.
Getting the pump refilled.

What do you do when you experience a set back?

Much Love,

Momma Berna

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