Back From The Hill

We did it.  The National MS Society's District Activist Leaders came together in Washington D.C. from all over the country for the 2019 Public Policy Conference.  We were trained, briefed and given all the resources needed to share with Congress members who represent our state.  A sea of orange engulfed on Capital Hill to represent every single person living with Multiple Sclerosis.

My husband and I teamed up with another couple from Nevada.  We are from Reno and they are from Las Vegas.  We met for the first time at the conference and we clicked immediately.  We went in and set it off as we lobbied to pass legislation to:

• Remove barriers to generic prescription drugs by eliminating gaming in system.
• Rein in medication price increases
• Cap out of pocket costs in Medicare part D, 25% to 40% of MS patients are on Medicare.
• $2.5 billion dollar increase for the NIH (National Institute of Health), the country's premier institution for medical research and the single largest source of biomedical research funding in the world.  All current MS disease modifying therapies are a result of NIH funded basic research.
• Protect patients from surprise billing.  Patients need reasonable notification if the facility or provider is out-of-network.  Health plan provider directories should include up to date and accurate information.

Nearly 1 million people in the U.S., more than twice the previously reported number, are living with MS, according to a recent landmark study.  All MS medications are tier 5 drugs aka specialty drugs and are very expensive.

We discovered that most of the people we met with are on board and have already begun to effect change for the same issues for many reasons.  We exist to help MS patients get what is needed to live their best lives!

D.C. Here I Come

Next year in 2019 (literally in a few months) I finally get to go to Capital Hill in DC with the National Multiple Sclerosis Society of Southern California/Nevada.

As an MS district activist leader in my state, I am very passionate about MS advocacy and government relations.  This is extremely important to me.  I have been working with the NMSS as a Nevada MS Activist for over 5 years now and I love it.  I have visited the legislature in my state capital Carson City several times and the outcome of sharing my story with lawmakers has made a difference for me and my fellow MSers in Nevada.  We advocated for health insurance for pre-existing conditions, cost of MS treatments/prescriptions and caregiver assistance just to name a few. We are game changers and we don't give up.

Stay tuned for more about my exciting trip to D.C.

MS Society/Nevada Legislature: Breakfast and Learn

Today my husband and I traveled to our state capital Carson City, NV where we participated in a Breakfast and Learn hosted by the National MS Society at the Nevada Legislature.  There were about 10 of us total and 5 of us were MS patients.  We greeted members of the Nevada Senate/Assembly and staff from various departments at the legislature.  I was supposed to give a speech but most people only had a few minutes to drop in for breakfast in between sessions.  So instead we all took time to answer questions and learn what others knew and didn't know about MS.

One person that really stood out to me was a young woman named Amerika.  Her mother was diagnosed with MS and she didn't feel like the doctor knew enough to really deal with MS and the level of care associated with an MS patient.  These are the people that I have the biggest heart for.  I gave her my personal contact information and told her to tell her mother not to hesitate to reach out to me for support and questions that I could help with.  I hope she calls me.

After several hours we went to the assembly floor where we were paired with an assemblyman or assemblywoman.  I was paired with assemblyman Chris Edwards.  The session was shorter than expected being that it was Friday and everyone was eager to go home to their respective cities to spend a final free weekend.  Things were expected to really ramp up the following Monday.





My husband and I enjoyed this experience.  It was neat to see that our state legislature reps were actually laid back and had a great sense of humor.  Everyone seemed to get along no matter what party they identified with.  Our main goal was to share our knowledge and awareness about MS with the people that would one day have to vote whether to pass a bill that directly affects MS patients and caregivers.

My husband is on the far right and I am in the middle on the bottom.

MS Speech Video 10/08/14

As promised in my previous speech: Farewell Biogen Idec, here is a portion of my final speech for Biogen Idec.  It turns out that this may not be my final speech after all.  The day before this speech I received an invite to speak at 2 events in California in November.  So it looks like the door is not quite closed just yet.  Yay!!!

Farewell Biogen Idec

My last speech as a patient advocate for Biogen Idec will be on 10/08/14.  The company has decided not to renew several contracts for the Tysabri advocates.  I think it depends on the need in our area.  I'm not sure but I have really enjoyed that past 3 years as representative of Biogen Idec.  I have flown to the conferences in Boston every year, all expenses paid.  I have forged relationships with tons of other patient advocates and I have met a lot of MS patients just like me trying to figure out how to fit MS into our lives.  This has been a very meaningful experience in more ways than one and I would truly like to thank Biogen Idec for sponsoring me.

Well, I must go now.  I'm awaiting a phone call from Taylor with Lazarr Partners to listen to and time my final speech and give me pointers.  I'm going to miss talking to her.  My husband plans to record my final speech and I plan to post it on this blog.

My Interview With Patients Like Me

Patients Like Me Interview

Hello, I wanted to share an interview that was featured on the Patients Like Me blog.  PLM is a website where patients come together and share tips and information with each other about their health conditions. Whether you have MS, ALS, Aids, Bi-Polar disorder, Chronic Pain or more, patients like me is a great site to visit, learn and share.

I don't get to blog as much as I would like so it was nice to do this interview for PLM.  I hope you enjoy it. Of course if you follow my blog then you have heard some of this before but not everything.  So please take the time to read and even leave a comment if your heart desires.

Thank you for being a part of my journey.

Starla D Espinoza

MS Cannot Be Ignored

MS is a progressive disease and if you have been diagnosed with MS, be sure to take action and choose a treatment plan as early as you can.  The sooner the better.  I have encountered several people with MS that are not being treated for various reasons, but mainly out of fear.  The best advice I received when I was facing the possibility of being diagnosed with MS was to choose a treatment as soon as possible.  I'm glad I listened.  The person that said this to me was a female co-worker in her early sixties who was diagnosed with MS when she was in her early thirties.  She was in denial and chose not to face the reality until the disease progressed significantly and she had no choice.  By the time she decided to treat her MS, she had too many lesions in her brain to count.  She can walk but she appears to be drunk when she walks.  She would fail a field sobriety test without any alcohol in her system.  Now I tell people the same thing.  Please take this diagnosis seriously and if you have to seek a second or third opinion, then by all means, do so but don't wait too long to choose the right treatment for you. Your doctor can help you make an informed decision.  There are more MS treatments available now that were not available when my friend was diagnosed with MS over 30 years ago.

I began treatment for my MS the same night that I received my diagnosis.  I already knew that there was a 50% chance that I had MS but it took almost a year because I only had 1 sign of inflammation in my T12 vertebrae of my spinal cord.  That's the middle portion of your back.  There was nothing noticeable on the MRI scan of my brain so the doctor could not diagnose me with MS until I eventually developed multiple lesions in my brain and additional lesions in my spinal cord within 7 months.

I am very, very passionate about staying informed and helping others with MS come to terms with their diagnosis and learn as much as they can about their enemy, Multiple Sclerosis.  I did as much research as I could about MS.  I really hoped that I didn't have it but I wanted to be prepared just in case.  You may not like meds, and neither does MS.  With the right treatment, you will win and MS will lose.  You may not appear to have anything wrong with you for years, but it's not worth the risk to wait until things get worse and believe me, things will get worse.  MS does not stop just because you don't believe in taking medication.  Ask people with cancer and AIDS how they feel about all the medications that they take to sustain their quality of life.

My current MS therapy is aggressive and carries a risk of developing a rare brain infection called PML.  Cancer, lymphoma, leukemia and AIDS patients face the same risk because anything that weakens your immune system can make you vulnerable to opportunistic infections such as PML.  Thanks to the advanced treatments available for AIDS, the risk of developing PML is less likely.  There is a common virus associated with PML called the JC virus, found in about 85% of the adult population.  Most people have been exposed to this virus by the age of 10 but not everyone carries this virus.  Those that do not have the JC virus cannot develop PML.

I found out that I do have the JC virus about 3 years ago but the risk factor has always been real for me from the day that I made the decision to try such an aggressive treatment.  The effects of MS are far more dangerous and real for me to ignore.  The risk is worth it for me at this time in my life.  I have been on this treatment for 5 years and I have not had any relapses.  The treatment does not take away or reduce the symptoms of MS.  Tysabri slows the progression of this super ugly and complicated disease.  Slowing the progression keeps me out of the hospital and able to enjoy my life.

Check out the WEGO Health Activist Speakers Bureau!

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Members of the WEGO Health Activist Speakers Bureau receive exclusive invitations to present at conferences, speak to members of the media, and be featured on WEGO Health.

Interested in joining the WEGO Health Activist Speakers Bureau? Apply today! It only takes a few minutes and they’ll email you as soon as they have opportunities relevant to you and your interests.

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Neurologist Update

This is an update to my post about my New Neurologist.  I had my first appointment with Dr Stephanie Smith and it went very well.  She's new to the city of Reno and she says she loves it here so I'm really glad to hear that.  I hope she will be around for a long time.  Everything went as well as I expected.  I do miss my former doctor but I will still see her at MS dinners where I give speeches about my personal MS story.

If you or someone you know has MS and you have questions or you just need someone to talk to, please never hesitate to reach out to me.  I mean it, I'm not just saying this because it sounds good.  I love talking to and listening to my fellow MS patients and/or family members or friends of MS patients.  We are all in this thing together and together we can make a difference.

My e-mail address is chocklitgirl@gmail.com or you can hit me up on Facebook at https://www.facebook.com/chocklitgirl32.

A New Neurologist

Hi Everyone, I have great news.  I may have found a neurologist to treat my MS.  Her name is Stephanie Smith and she is new to our city.  She is supposedly familiar with MS and I have an appointment in 2 days.  I'm really looking forward to meeting her and I'm hoping for the best.  According to a news release, Dr Smith completed her neurology residency at the University of Minnesota.

If you follow my blog then you know how much I have been through in the past with the local neurologists.  We don't have many that treat patients with MS and my recent neurologist is no longer contracted with my insurance company. The other 3 or 4 MS specialists in Reno, NV have a policy that does not take on patients who have previously been treated by any of the other 4 neurologists within their group.  It's very unfair to have MS and be refused treatment for something that is not your fault.  I did nothing wrong but they treat me like I'm not a good patient.

Well, enough about them.  I have better things to think about and talk about.  What goes around comes around, that's all I have to say about that.

Stay tuned for my update after my appointment this Friday 11/8/13.  Keep hope alive.

The Conspiracy Continues

And the conspiracy continues.......

This is an update to the health care provider night mares that are taking place where I live. http://didimentionmyms.blogspot.com/2013/01/what-about-patients.html?token=yU9Ig0EBAAA.wtDewYq9M8t2B_pB_OeoQQ.5j8onZoycEXIPgsAtu7mJw&postId=3512503304457050802&type=POST

Most of the neurologists in my city are inaccessible to me and a lot of other "MS" patients.  How is this legal? I don't understand.  Especially since we haven't done anything wrong even though we are being treated that way. Let me back up a little.

Recently, my current neurologist switched to a group that does not accept my insurance.  She is also a professor and she accepted a new and most likely better position for herself.  I don't blame her and I am happy for her but I will really miss her.  She and I speak at the same dinners sometimes so I will still see her every now and then.

Anyways, I called the same neurology group that I dealt with previously and asked if they were accepting new patients.  The answer was yes right.  That's when I gave my name and asked if they received my referral from my primary care physician.  I was told that the doctor has reviewed my file and he saw that I am a former patient of another doctor so he is refusing to take me on as a patient.  Then she tried to clean it up a little by saying that they are very busy so the doctors are taking patients on a case by case basis whether you have MS or anything else.  Yeah ok, whatever.  That's when I requested to speak with a manager.  She was going to talk to the manager and get back to me.  That never happened so 2 days later I called and this time I listened to all my options.  What do you know, there was an option for the "office manager".  She actually answered the phone since she didn't really know who was calling.  She did receive my information so at least the receptionist did her job.  The manager reiterated what I was told before so this time I requested her to send me a letter stating the reasons for denying to see me even though they claim they are taking new patients.  I told her that I need it for my insurance company because I'm hoping to convince them to establish a contract with a new group.

So that's where I'm at right now.  The biggest part for me is maintaining my monthly MS treatment.  I found out that any doctor who is willing to register with the TOUCH program to help manage the risk associated with the treatment can prescribe Tysabri.  That's good news as long as I can convince my primary care doctor to get on board.  Stay tuned for the next episode.............

Guess What Time It Is.....

If you follow my blog then you know that I am a patient advocate and I have traveled to conferences in Boston, MA for the past 2 years.  It's time to head to another conference for the third year.

At the conference, we receive updates on important things like new treatment developments, government affairs, support for care partners, and healthy living.  I look forward to this every year.  It helps me build confidence when I speak to groups of people about my MS story and how people with MS can take charge of their condition and have a good quality of life.  I connect with other advocates and share tips on how to make a difference in the MS community.

MS awareness has come a long way, but there is still a long way to go.  In light of a cure, researchers are also trying to find ways to repair myelin damage.  At the conference, we learn everything there is to know about our condition and how to treat it.  We really are experts and we take pride in helping to educate our family and friends and other MS patients and the communities that we live in.

Here is my blog post about the first time my husband and I went to the advocate conference in 2011.
http://didimentionmyms.blogspot.com/2011/12/back-from.html

Here is my blog post about the advocate conference in 2012.
http://didimentionmyms.blogspot.com/2012/12/back-from-boston.html

Working Around MS.........Update

This is an update to my post Working Around MS

Good news.  The company has agreed to allow me to continue the accommodation being allowed for me.  For 2 weeks, I was very stressed and upset because I didn't understand what was going on.  I felt like I was being attacked due to people's lack of understanding, knowledge and education about my condition.  You see, it's not easy to tell that I struggle with MS daily.  Someone asked me why I don't just go out on disability.  Really?  So I asked them, why don't you just go out on disability?  They looked at me kinda strange and said, "What do you mean?"  And I said, "Exactly"!

I can understand how it might seem unfair from the outside looking in.  You don't know, what you don't know so you assume what you want to assume.  I am guilty about making wrong assumptions about a situation when I don't have all the details.  This has taught me a valuable lesson about assuming and how it can hurt others.  I vow to give everyone the benefit of the doubt and not judge or make assumptions about people or situations that are frankly none of my concern.  Honestly at this point in my life I don't have time to be concerned about what others are doing unless it directly affects me.

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.