Thursday, December 5, 2013

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.

Sunday, November 10, 2013

Check out the WEGO Health Activist Speakers Bureau!

I just applied to the WEGO Health Activist Speakers Bureau and I thought some of you might be interested in learning more about it as well – it’s a great way for Health Activists to share our stories, raise awareness and get the word out about the work we’re doing.

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.

Saturday, November 9, 2013

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.



Wednesday, November 6, 2013

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.

Sunday, October 13, 2013

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.............

Saturday, October 5, 2013

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


Thursday, October 3, 2013

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.

Sunday, September 15, 2013

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


Thursday, June 13, 2013

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!

Thursday, May 23, 2013

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!!

Tuesday, April 16, 2013

Sunday, April 14, 2013

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.........

Thursday, January 24, 2013

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.