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

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.

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

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

 

 

Trials and Expectations

On Monday July 11th 2016, I will be checking in at Kaiser Redwood City for 5 days.  This time, I am going in on own volition.  I was reading up on post stroke treatments and there are many out there. Many of these options were not brought up by my doctors.  In my research,  I learned about the Intrathecal Baclofen Pump or ITB pump. Baclofen is a medication that I take that helps relieve the spasticity and tone that was the result of the stroke. In simple terms, spasticity is why my hands stay clenched or why my knee does not bend when I walk. I’ll get into detail about tone and spasticity on another post.

I have worked hard at getting to walk again, I can even try do a quick jog. But when I do, my left leg feels like it is wrapped in a cement block. By getting the pump, I hope that the tone on my leg would ease up enough so I could run again.  I won’t be in constant fear of falling on my face again,   and I wont be causing damage to my other joints.

This 5 day stay will be to determine if the pump is suitable for me.  The trial period involves the insertion of a catheter through my spine where the medicine will be delivered. During the hospital stay, they will determine if the medication is a good fit for me.  They will also determine the right amount of medicine that I will need. I am to get physical therapy twice a day to get an objective view of my progress or lack of. After the trial, if the medication is effective, I can decide if I will go ahead with the implant surgery.

I maybe putting too much hope into this trial. I am expecting that this trial will show that I will be able to run again. That my leg will function as it should again. That it will stop the painful spasms that wake me up in the middle of the night as if someone is tightening a vice grip on my thighs. I have very high hopes. After the trial period, I will have a few months to decide if I would want the surgically implanted in my abdomen with a thin catheter attached to my spine delivering medication.

The doctor has informed me that this method had worked very well for people with such high spasticity that they are not able to get up from their wheelchairs. In my mind, this sounded like this “if it helps people who cannot walk get up and walk again, then imagine what it can do for me!”. The doctor quickly burst that bubble by saying “you might not notice much difference in you” BUZZKILL!!!!

I am scared, I have high expectations, I am hopeful. If there is a chance that this will work, this trial is where I get to find out.

Please send out some positive vibes for me! Stay tuned!