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

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

 

 

 

 

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

 

 

What Happens Next?

I had done the five day ITB Pump trial.  I can say that the results were amazing! For a couple of days, I was able to feel how to walk “almost” normally again.

  • I “checked in” on Monday. After getting out of my street clothes and changing into the standard issue uber sexy hospital gown and settling into my room, the nurse took vitals and I set to wait for the doctors.  The doctors came in and gave me a rundown of what was going to happen the next five days (We were in constant phone contact prior to this day, so this was just a review).
  • The doctors then prepped my back for the insertion of the catheter which will infuse Baclofen directly to my spine. They start with  a super low dose. After the insertion, I am to lay flat on my back for 6-8 hours to allow the insertion site to heal. Otherwise, I run the risk of getting a spinal headache. Which according to  the doctors, is the worse headache one could ever experience. I was not even allowed to bend my legs. Apparently, I did not follow this direction to a T coz I got a headache that kicked my ass the next day. I wanted to do a test walk, so I lied and told the Dr. I was fine.
  • The first day at a low dose, I already felt a difference! My steps felt lighter and my foot was not curling in. The doctor and I walked a couple of times around the floor. My headache was getting worse, so we had to stop. And once again I had to lay completely flat on my back for a few hours.
  • Wednesday, the physical therapist came by to walk with me. We once again just walked around the floor. I asked if they had a treadmill, unfortunately they didn’t (i brought running clothes!!). I really wanted to try my new legs! She watched the video of me walking before the medicine was hooked up. It turned out that I was walking the wrong way. I was walking fast and steady, but I had adapted by walking while swinging my leg outwards to make big steps. I now have to relearn how to walk again.  I also walked around with Armando and Scotty, they even noticed the difference! Scotty said “You don’t walk like Frankenstein anymore!”
  • Thursday I was at full dose. My leg felt light, I didn’t feel any tone or spasticity, I wanted to run! Later that day, they started tapering down the medicine I was receiving. I had so many mixed feelings. I have many questions, I was anxious. I knew that when I wake up the next day the little bit of freedom that I had was going to be gone. My light legs will be gone.  I was sad.
  • Friday was check out day. The catheter was removed and I was placed on flat bed rest again for the rest of the day. The doctors came in and talked to me about the results of the trial. He was glad that I had thought to record myself walking as it served as a  good reference for the trial. We took a before and during video during the trial. Both the Doc and the PT  were very encouraged by the results, they think  I will get very good results from getting the implant. The decision is mine.
  • As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!
    As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!

The medicine is now completely off my system and I can definitely say that it made a big difference. I have talked it over with my family, I have thought about it the past few days. I am leaning towards getting the implant. Do I have HUGE expectations? You bet! I have some time to think about this, I have many questions. My family and I also have our reservations because as with any surgery there are risk. But seeing the difference, how could I even have a second thought?

 

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!