Working Around MS

I am very active in the MS community.  I do as much as I can to educate and raise awareness about MS.  I am a patient advocate and I share my personal story with the public, especially people who are newly diagnosed with MS and looking for answers and understanding about this very unpredictable and misunderstood disease.  I have talked to people who believe MS means Muscular Dystrophy and they have no idea that MS affects the central nervous system.  I didn't know anything about MS until a few months before I was diagnosed.

My employer is very passionate about supporting various causes and charities in the local community.  Every year the company has supported my participation in the MS Walk as team captain of The MS Warriors. We have been among the top fundraisers for the past 5 years.  There are quite a few people with MS that work for the company and participate in the walk.  In addition, a lot of the employees bake goodies for our bake sale and make personal donations as well.  Employees have looked forward to volunteering for this event every year.  I think it's safe to assume that my employer is a big supporter of employees with MS, the MS community and finding a cure for MS.

Recently  I have been dealing with issues regarding reasonable accommodations.  For the past 4 years, I have had a signed agreement with my employer that provides specific accommodations for me in support of my condition.  This scenario benefits both me and the company.  I am able to be employed full time and the company is able to retain someone with a high level of experience and knowledge in my field.

I have been doing it for 4 years w/o any undue hardship to the company.  This doesn't cost the company anything at all to accommodate my arrangement and it does not impact my co-workers. There is also a standard set by the ADA and EEOC for employing people with disabilities.  Not only that but I don't abuse it and my productivity has always been great.  I don't know why my new manager is unwilling to look outside the box?

Everything is not always black and white or right or wrong.  That is a "dichotomus" way of thinking, when someone is unable to see the complexities of a situation.  While this kind of thinking may have advantages for quick decision making, it can lead to a gross misunderstanding between people who have incompatible opinions.

My current agreement will need to be renewed at the end of 2013 but the company has the right to end it at any time.  In this situation, why would they want to?  Especially when they support everything else that I do.  I am a reliable, trustworthy employee and people within the company know that when they need assistance from my department, I'm one of the first people that they reach out to.  I am always courteous and professional.  I answer my phone and respond to e-mails quickly and efficiently.

MS fatigue is unique and it causes me to feel like something has depleted me of my energy half way through the day.  I don't really "look" sick or in need of any special accommodations but as most people know, MS can be very deceiving when you are on the outside looking in and it doesn't affect you personally.

 Honestly, I actually feel like I am being harassed and caused undue hardship by someone's lack of understanding and unwillingness to accommodate something that has been working quite well.

Strength and perseverance is something that most people with MS possess.  We believe in moving forward and maintaining the greatest quality of life possible.  We want to be employed just like everyone else and sometimes we do need a hand up in order to maintain our job.  I hope the company doesn't allow one person to ruin something that has been going very well due to their lack of knowledge and understanding.

Do I have a sense of entitlement and expectations from my company?  Yes, because I have been with the company for 13 years.  I have a good reputation because I go above and beyond every single day.  I love my job and it shows.

MS—Now You See It, Now You Don’t - The symptoms of MS can come and go.  Other people with MS live with symptoms that are not visible.  To hear the comment, “Well you don’t look sick” can be very frustrating to someone who has MS.  Sometimes friends, family members and employers don’t understand symptoms such as fatigue, and mistakenly label the person with MS as lazy.  
Multiple Sclerosis Foundation

I'm Positive

My current MS therapy does a wonderful job of slowing the progression of my MS but it also carries the risk of developing a serious brain disease called Progressive Multifocal Leukoencephalopathy aka PML.  Some people carry a virus in their body that makes them susceptible to this disease.  For those that do not have the virus, known as the JC Virus, there is no danger of developing this brain disease known as PML.  However, a person that is currently negative for this virus could become positive in the future.  Doctors do not know what causes it or what exposes people to this virus.  About 2 years ago, I discovered that I carry the JC Virus.  It was the result of a study for people with MS who use Tysabri as their therapy to slow the progression of this disease.

Before I ever decided to begin using Tysabri, my MS was very aggressive and out of control.  The treatment I was on at the time was not working very well.  I was having relapses every other month.  I had to go on high dose steroid treatments via IV several times.  Eventually my neurologist decided to send me to UCSF and it was there that a doctor highly recommended Tysabri because it was the most aggressive treatment for MS at the time.  And it still is.  I was aware of the risks due to an ad for Tysabri that I saw in a magazine.  The first time I ever read about Tysabri and the possible side effects, I vowed to never use that drug to treat my MS.  That was before my quality of life began to quickly tumble down hill and I felt completely out of control.  Eight months after being diagnosed with MS, I found myself facing the decision to take a risk.  It was a little difficult at first because I never imagined facing a decision like this less than a year after being diagnosed with MS.

I have been on Tysabri for over 4 years now and I'm still doing very well.  Tysabri doesn't stop symptoms of MS, let me make that clear.  I still experience numbness in my right foot that increases when I'm stressed or tired.  I still have to take nerve pills to prevent me from feeling all the nerve activity in my body.  Fatigue has been a huge issue for me since my diagnosis but I have good days and bad days.  My short term memory is not what it used to be but I know I can do certain things to exercise my brain to help me not forget everything.  Overall, I am positive.  Even though tests show that I am positive for the JC Virus, that's not all I am positive for.  I'm positive about my future with MS.  I have MS but MS does not have me!

It's All Good

Well, the MS Warrior's just wrapped up another successful year of raising funds to help fight MS.  This is our 5th year and we raised $6198.  I would like to say a special thank you to all those who have helped with all our fundraising efforts and those who walked with us on 5/3/13.  Every year gets better and better.  I never imagined making over $5000 in a matter of months and we have exceeded that.

On a personal note, I have been doing fairly well.  I want people to understand that when a person with MS says I am doing good, that simply means, today is a good day.  Sometimes it would take longer than a few seconds to tell you how we really feel.  There are daily, unpredictable struggles that are very challenging.  But those of us with MS have made a decision to say, I am good despite this life changing, debilitating and progressive illness.  The story of my life is, I'm so tired.  I don't have the energy to explain that MS fatigue is unpredictable and difficult to manage, no matter how much sleep I get the night before.  The fatigue comes with the disease and I have found creative ways to manage it.  But when it gets the best of me, I have to listen to my body, even though I have made plans to do something with my daughters or to work for 8 hours every day.  Please believe that I pay a price when I deplete my energy levels before I have carried out all my plans for the day.

But not to worry.  For I personally have been blessed beyond measure.  I know that MS is not the worst thing that can happen to me and for that reason, I am very grateful and honored to bear the cross that has been placed in my path.  God has shown me in more ways than one that I really can do ALL things through Christ, who gives me strength every single day.  I know that I am not alone when it comes to having a life
changing illness.  I trust God and I realize that He knows the plans that He has for me.

So whether you have MS, cancer, diabetes, chronic pain, depression or anything else, I want to encourage you to be strong in the Lord, and in the power of His might.  Don't have too much pride to say, I am weak.  For when you are weak, He is strong.  He will provide you with the strength that you need to face any challenges that might come your way.  So trust in the Lord with all your heart, and do not lean on your own understanding.  Acknowledge Him in all your ways, and He will direct your path.

Every day is a challenge, but I have an amazing husband, daughters and family that love and support me and will do everything they can to make things go smoothly for me.  And sometimes I am able to pay it forward which really means a lot to me.  Praying for others and doing what I can to alleviate someone else's burden is very therapeutic.  So from the bottom of my heart, thank you!!

To make a donation or join our walk team click here:  MS Warriors.

MS Warriors: Walk MS

Walk MS 2013

It's that time of year again, Walk MS 2013.  This year is going to be the best ever.  For the 5th year in a row my team the MS Warrior's is raising funds for MS research and for hope for a cure.  The walk is hosted by the National MS Society and our team was among the top fundraisers last year.  We are so pleased to do what we can for those affected by MS.  My husband, daughter Daesia and I have gathered donations for our upcoming raffle.  So far we were able to secure gift cards from Red Lobster, Olive Garden, Outback Steakhouse, Blockbuster, Lucky Star Nails, Road Rider of Reno, Mimi's Cafe and more.  It was a very successful day and it makes a big difference in our fundraising efforts.  It gives us the motivation and encouragement that we need to keep going.

My co-captain Laura and I have raised $2720 in cash donations for our team so far.  We are having a bake sale on 4/26th and we will be selling raffle tickets for the prizes that we have collected from local businesses.  There are so many people that actually care about our cause and it means so much to us.

This year I will be interviewed on the local NBC news to promote the MS Walk and our team, the MS Warrior's.  I'm really excited.  There will be 2 interviews at the station on the following days:

Tuesday 4/16 at 4 p.m. 
Thursday 4/25 at 11:00 a.m. 

 I will try to post a video if I can.  Stay tuned.........

What About The Patients?????

This is a letter that I plan to write to the editor of our local newspaper:
(On this day I was receiving my 46th tysabri infusion.  This is sort of a sequel to my post "Conspiracy in the Biggest Little City")

Dear Editor,

On January 15, 2013 I was receiving a medical treatment for Multiple Sclerosis and chatting with my nurse about the shortage of MS neurologists in Reno.  To add insult to injury, there are a group of neurologists that will not see you if you are a former patient of any doctor who does call outs or are "on call" with their group.  Case in point.  I called a neurologist that was referred to me.  I am a former patient of another neurologist in their "on call" group.  I asked the receptionist why their doctor would not take me as a patient and her genius answer was....pause....wait for it....."I don't know".

She attempted to come up with an explanation but she couldn't come up with anything that actually made sense to discriminate a patient based on those grounds.  So she did what any person does when they don't know anything.  She transferred me to a recording.  I explained to the voice mail that I wanted a detailed explanation as to why a patient would be denied on such grounds.  All of this took place on speaker phone in front of the nurse and she was baffled to say the least.  She was not aware of this problem with our limited number of MS neurologists.

All this mayhem is tied to one doctor in particular who seems to be pretty powerful.  You see, he is a great MS doctor.  As a matter of fact, he is one of the best but he is extremely rude to his peers, staff, nurses, patients and just about everyone he deals with.  I have spoken to many MS patients who complain about this doctor and are in the same predicament with trying to "opt out" with not much luck at all.    I even tried to get permission to switch to the other doctor in his group and they both denied that too.  Even though I had not done anything wrong.  I just wanted a doctor that is capable of showing me some respect.  I have enough going on as an MS patient.

My biggest problem with this is, he gets away with it.  Why is he still in business?  Why do patients have to be plagued by a doctor that is incapable of being respectful to them?  As of today, it is my personal mission to find out.

Starla Espinoza
Sparks, NV


PS, no one has called me back from that doctors office yet.  I guess I will have to call again and I don't plan to stop until I get a clear, detailed explanation.

Back from Boston

Took this pic on the way to airport

On Wednesday 10/31 (yes, Halloween and on the heels of hurricane Sandy) my Mother and I headed to the airport in anticipation of our trip to Boston.  This was my second year going to Boston and my mom's very first time.

We arrived at the airport at 5:30 and it was dang near empty.  No one was in the check in line and the security line was also non-existent.  There was only a handful of people in the airport waiting for flights for the first hour that we were there.   We would be connecting in San Francisco and our flight to Boston was the last one out of San Francisco for the night.  We almost had to stay the night in San Francisco.  It's only about 50 minutes from Reno to San Francisco but it seemed like forever because there was a lot of turbulence and we were on a small plane.  I have never prayed on a flight the way I did that night. 

The San Francisco airport is huge and our connecting flight came in from Hawaii so it ended up in the international section.  What a nightmare.  I truly felt like we were in that reality TV show, Amazing Race.  They made it seem like we only had 1 minute to get to our gate all the way on the west wing.  I really did not want to stay the night in SFO so we were booking to make it to our gate.  When we finally got there, our plane wasn't even boarding yet.  They were boarding 2 different flights, one to China and one to Australia.  It looked like we weren't the only ones rushing to the gate.  Once we boarded our flight, an older couple actually convinced them to reopen the gate for them.  Two words, Amazing Race.

We arrived in Boston at around 8:00 a.m.  We were greeted at the baggage claim by a friendly young woman holding a sign for BiogenIdec.  We got our bags and she led us to a sleek black luxury car.  Almost like a limo but a bit too short.  The driver kindly loaded our bags in the car for us and we were on our way.  The weather in Boston was beautiful.  The sky was clear and blue and the temperature was a comfortable 69 degrees.  Hurricane Sandy only yielded heavy rain and winds in Boston just a day before.  How did Boston escape the extreme damage left in New York and the Jersey Shore?  I thought for sure the conference would be cancelled because Boston was expected to be in the eye of the storm.  To all those affected by that terrible storm, my condolences and prayers go out to you.  I asked God to renew your hope and your strength and to restore all that was lost and more.  May God also have mercy on the souls of those who lost their lives.

Our hotel was only a few minutes away from the airport in downtown Boston which is very similar to downtown San Francisco.  When we arrived at the hotel, a doorman named Humberto was there to unload our luggage while we checked in and then led us to our room.  He gave us some very helpful tips about the city and what was nearby. 



He was also sure to warn us that everything in the refrigerator was extremely expensive and told us not to even remove something to look at it. If we did, a signal would automatically go to the front desk and charge it to our room. Most of the items didn't even have a price. The box of chocolates to the left of the Snickers was $8. There was a tiny section which had just enough space to store a drink or two of your own. 

We were super tired and hungry.  The conference wasn't expected to start until 5:00 p.m. so we had some time to do a little sightseeing near the hotel.  We tried to find a restaurant nearby but there were only deli's. 

We were near the Boston Tea Party Museum but it was closed.

 We took a few pics outside the hotel.


 





There was a water taxi directly outside the back of the hotel.

The hotel had a 3 restaurants but one was closed and the other two were only serving light, continental style breakfast.  So we did the next best thing and ordered room service.  We wanted some meat and some eggs, ya know.  My Mom had steak and eggs and I had blueberry pancakes and sausage links.  Now that really hit the spot.  After that it was time for a nap.

Later that evening we headed down for dinner and mingling.  I spotted some people that I met last year and connected with some new folks too.  At the conferences, they always serve wonderful food buffet style and there is even an open bar with different varieties of beer and wine.  It always surprises me to see the alcohol because at least 90% of the people there are on assorted medications.  But we are all adults and everyone was sure to manage their alcohol intake very well.  The first night was mainly introductions and a review of the conference schedule. 

The following day was mostly meetings and training.  

The meetings are always very informative and the training is actually a lot of fun.  We act out different scenarios and laugh a lot!!!  We also receive updates on the latest health care information, healthy tips, government affairs (this was a few weeks before the election so it was super interesting) and more.  There is also a presentation from the CEO George Scangos.  Can I just say that George is very passionate about MS treatment.  His story is quite remarkable and he seems like a very humble man. 

Later that day, we were loaded with tons of information and ready to relax and unwind.  Now was a good time to rest, take a bath, explore the hotel and city or whatever else our active brains could think of.  My mom and I decided to hang out in our room and visit with a woman named Cleo.  She is a singer and she serenaded us with a song chosen by my mother, His Eye Is On The Sparrow.  Her soprano voice range was music to my ears.  I loved her.  Her smile was infectious.





That evening, we had a wonderful cocktail attire dinner and dessert. We danced, played games and really had a wonderful time. There was a photo booth too. We took pics with a few other women that I met last year. Talk about funny, we couldn't stop laughing.


After dinner and dancing to a few of my favorite songs, my Mom and I headed to our room to get packed and prepared to leave the next afternoon, right after the conference ended.  I really missed my husband and my daughters and I was anxious to get back home.  We had a long day ahead of us and we were still drained from the 3 hours that we lost when we arrived on the east coast.  I just hoped the airport gates in Denver weren't too far away from our connecting flight.  (It ended up being the same gate that we arrived at, yahoo!)


It's a good thing our final day was short and sweet.  At breakfast the next morning you could tell that everyone was drained and quite frankly ready to head home.  The famous or infamous bell had little to no effect on anyone.  If you read my post about the conference from last year, Boston Advocate Conference you might recall the bell that I described as a xylophone made of steel.  Ok, so I'm not very good at identifying small musical instruments because it was certainly not a xylophone.


Fifteen minutes before each session, a woman would walk around with hand held chimes. The melody was very pleasant and low key. It reminded me of something you would expect to hear on the front porch of your beach front bungalow, when the wind would blow ever so slightly. Now, since I don't have anything like that, this is just my imagination running wild incorporated with things I must have seen on TV.

Yeah well that bell was pretty much viewed as more of a suggestion.  Most of us arrived at breakfast with only 10 minutes to spare, this is what eventually happens when you get spoiled from day one.  That is until a staff member literally went to each table and gently urged us to get moving.  Our brains were loaded to the max and I'd say we were anxious to share all that we had learned with family and friends on Facebook, Twitter, etc....  We were sure to exchange numbers and social media information with those that we hung out with during the conference. 

By 12:30 we were having our final lunch and wrapping things up with closing remarks, sentiments and deep felt appreciation.  Many shout outs were given to the BiogenIdec staff for such an amazing, pampered weekend.  Their employees are so caring and dedicated to the MS community.  To Pamela Raglin, Thanks for all you do and have done for me and people with MS.  Me and my Mom had a wonderful time and everyone loved my Mom. 

I am looking forward to my next opportunity to address a crowd about living with MS.  For more resources on Multiple Sclerosis, go to http://www.msactivesource.com/index.xml.