Post-Election Reflection


Note – this is not my usual multiple sclerosis commentary blog but something even more important for me to weigh in on. Also, I have disabled comments on this page because I just need to get this out of my head and not turn it into a debate.


Leading up to election day I had a feeling this was going to turn out differently than I and so many others had hoped for.  Don’t paint me as just a bad loser. I have backed presidential losers before, starting with the first campaign I worked for before I was even old enough to cast my own vote.  I learned that standing in front of a polling place campaigning for George McGovern was a cold, lonely spot, but I never felt afraid or even hesitant to voice my support.  My yard sign for Kerry/Edwards still hangs in my garage and at least half of that duo would have been great in office.  I’ve always tried to listen to the views of others and have hoped the same would be offered to me.

Fast forward to now and I’m still processing – so much has happened this year, and all of it resonates as deeply personal. I’ve refrained from talking or writing much about our presidential election results.  Instead, I have been reading both the positive and negative reactions of others, some who are strangers and others are people I know well.  I’ve given the occasional thumbs up on Facebook or skipped commenting at all when I disagreed.  I have not ‘unfriended’ a singled person because I’m trying to make sense of it all, as I’m sure so many others are.  What I know that I already “don’t get’ is when it became acceptable to toss out civility and speak our minds in the most hatred and ugly ways, proclaiming it is a right under our constitution without understanding that this right also comes with the responsibility and accountability to the laws of a free nation.  When did we stop listening to others?

I’ll make no apologies that I did not and would not vote for the man who has now been named our next president.  His and his representatives’ words of hate fired toward minorities, women, non-Christians, LGTBQ community members and so many more,  turned me off from whatever message he might have had about being different and draining the swamp. The fact that these were not occasional missiles fired to provoke his followers into action but a constant barrage that began much earlier this year, should not and cannot be glossed over by his promise of reconciliation.

I don’t understand the people who voted for him when they know that I and so many others  including their own family are members of the disability community he felt necessary to mock, they have family members  who are bi-racial, or those with grandchildren who have a parent from those other countries which we will now build a wall to protect ourselves from.  Nor do I get it when I look at the fathers and mothers of adolescent girls and think it is ok to make a man who claims the privilege of being able to grope and belittle women, their president. I don’t understand how a candidate can select a running mate who not only wants to live out his own extreme evangelical religious beliefs, but has proclaimed that his religion is the one that must be the rule of our land.  When we vote, not only is it our vote we cast for the present,  but we are also doing it for the future of this country, and to have overlooked these flaws is a serious shortsightedness that cannot be corrected regardless of what lenses we might view this through.

I understand this country is hurting and struggling – we have trillions of debt to figure out mainly thanks to waging wars started over a decade ago that seem improbable to win against enemies that are constantly shifting their shape.  We have a crisis at home with the people who have fled here from other countries, escaping conditions that few of us can imagine whether they come from war torn countries across the ocean or the poverty just south of us in Central and South America. Perhaps I don’t get angry when I think about these people wanting to be here because I deeply appreciate the good fortune and luck of having been born an American. Who can blame them for wanting to be a part of this country which proudly proclaims to the world our unique concept of liberty and has always welcomed the huddled masses.

I also recognize the genetic pool that had me come from my mother’s womb as a white person determines my life opportunities much differently than had one or both of my parents been a person of color. The argument that we all have the same opportunities is blatantly false, and is quickly proven with a few moments of research if you genuinely wish to know more and understand the inherent racism we live with.  I was hoping we were making progress toward equality, but too many events over this past year or so show we are still so far from that goal we might not even be able to view the end zone.

Just because I am white does not mean that my way is the best way or the only way, but it appears the person who will have the most influence on our next president does believe that, as evidenced by his publications which support and allows white supremacist views to go unchallenged.  I am sickened by the thought that the head of the KKK is applauding this appointment, but even more horrified that this is acceptable to the people who voted for this next president.  If you exercised your vote to elect this man, you can also exercise your voice to say this is not what you thought you voted for and speak up now.  Hold our next president accountable to a higher standard.

The White House on Pennsylvania Avenue has been good enough for everyone since president #2 and is equipped to handle all contingencies and is conveniently located to meet with members of the legislative bodies.  Personally I would be delighted to live in the White House year round and I hope the next president chooses that as well because if he sticks with his idea to jet back and forth to his NYC penthouse, the gridlock on the streets and in the air in both cities will become unbearable and costly. All joking aside, it would probably be cheaper to remodel the White House and gild every throne in gold than have a president who has just a part-time residence in Washington DC. The tab for providing staff and security appropriate for the leader of the free world will rise each time he transfers locations and his campaign promise to reduce tax spending should start with his own living choices.

An acquaintance in the MS community is an award winning photographer of wildlife and spends hours in the bushes waiting for just the right shot of her beloved shore birds.  Her work is stunning and beautiful, and requires inordinate amounts of patience, but the hatred toward the losing candidate that she continues to spew through her FB posts tarnishes all that she does and is what finally moved me to write this today, one week post-election. For whatever reason, she can’t turn off the public display and hasn’t even tried to tone down her words.  Moving forward is impossible it we continue to hold onto the past as she continues to do.  I’m hoping that whatever candidate you voted for, you will find a way to move forward to improve the snapshot of today and not indulge in hate.   Our country deserves better.  We deserve better for each other and especially for our children and our grandchildren.

Yes, I know this is a simplistic view but it is at least a start for me to try to wrap my head around all the contradictions of this election where people who I know are good people made a choice I strongly disagree with.  I wish I could turn back the clock to a more innocent time of standing on the corner inviting people to vote for McGovern – maybe we could get it right if we had a second go at it.







My Updates


Time sure has a way of getting away from us and I feel that a lot as I notice my personal blog has sat here neglected.  It’s not that I don’t have things to say and write about, as I have been busy with other outlets. To give a quick update-

I am still writing for –  the great group of people at Health Union would have a hard time getting rid of me because I love their approach to consumer medical care and empowerment.  They are an amazing group of people to work with, and I particularly like that they will print whatever I submit, with no editorial control.  You can catch all of my writings there via this index link-


In June at the Consortium for MS Centers Annual Meeting, I met the owner of Multiple Sclerosis News Today, an online reporting source of medical news and I began a weekly column on patient engagement for their publication. My column, Engaging Thoughts, is a look at some of the tough areas needed to move  research forward. I’ve slowly gathered regular readers but it appears the hot topics the people with MS there want to read are about ‘cures,’ whether they are proven or not.  How we engage as patients is an important topic and I’m thankful the MS News Today owner is sticking with this idea and allowing me the opportunity have this conversation.

Additionally, I have written for Mango Health, a health app that has some interesting side uses.  I have a series of articles on various topics coming out, including one on Strength Training. If you don’t know Mango Health, you might want to check them out and give their app a try to tracking your health needs and other activities of daily living.

REAL MS™ is a longitudinal study for people affected by MS, and it officially launched this month.  we also have a long-awaited new look to the iConquerMS™ website and portal. I’m excited about both of these and happy to share we have over 3,100 people now enrolled with our PPRN.

It has been a long summer for me filled with conferences, writing, research, health challenges and much more.  The majority of things though have been great and I hope to be sharing more good news in the near future.  Until then, I hope you will follow the above links and catch up on any of my articles you may have missed reading, leave your feedback, and learn a bit more about my life with MS.

be well,





Official Channels & Protocol


Back in March I had someone online comment about how one of the world’s largest financial rating organization was now offering a service to assist medical providers rate the adherence of their patient population to their medications. The concept was intriguing and alarming and I used the ‘contact us for more information’ portion of their website, requesting information.  Straight up I said I was looking for information to write a blog on the topic.

The contact person and I played phone tag and email tag back and forth from March until July for a variety of legit reasons on my part.  When we finally spoke by phone in July he was great, informative, and helped to answer my questions as to how this very large company, which normally rates financial risk could be in the medical risk market.  It was explained to me that this was more a service of providing the analytics for a provider, such as Medicare, to use to assess risk and they do not maintain medical databases.  What was done with that information was unclear to him after the programs are delivered to their client.

I wrote the blog, allowed this nice person to read it and he requested his name be removed because it wasn’t his official position to comment.  I complied with his wishes, the article posted with just a few of his quotes attributed to ‘a person at’ and then the next day I received a not so kindly worded email from the PR firm for the financial giant, demanding to know the name of the person I spoke with.  I offered them that information after first offering to allow my contact to do it for himself.  The PR person curtly pointed out I had not followed official procedures and had somehow violated something with their protocols.  Huh?

Then today, in another email follow-up from a different suit at the parent company, I was told I need to edit the blog, take all of the quotes out since this person was not authorized to speak for their company, there are strict rules and protocol to follow, and that I was to send them a copy of the revised article before it was published.   Again, huh?  Is that really how this works? And BTW, it was already published and you know what they say about the internet – once it is out there, it never can really go away.

If you read my blog (as of now it is still posted)  you will find that there is actually little focus on this leader in the financial rating industry  except using a simplified explanation of their medical adherence analytics system as the springboard for the rest of my article, focusing on the larger problem of adherence and its cost to our medical system in the US. If I were them I would have said no harm, no foul and let it be, but of course I am not this behemoth corporation.

At this point I am even more curious as to what medical adherence scoring service really offers if it has raised such interest in a simple MS patient blog.  If anyone can offer insight, I would love to hear it.  That is unless you happen to work for FICO,  because I wouldn’t want to violate any more protocols.


As always,








LTD and Me


It was a most curious conversation I had the other day with the latest ‘expert’ at the company that is handling my long-term disability (LTD) claim.  It was a new case worker and first we had to clear the usual hurdles and introductions.  Then the conversation went pretty much like this-

Expert: So, how are you doing?

Me: Ok, there are good days and some not so good days, (I reply, trying to be pleasant rather than dump on her about the latest physical woes.)

Expert: That means you are better?

Me: Umm, do you know anything about multiple sclerosis? (Trying to be respectful)

Expert: Well I have read some and I know it is a disease that comes and goes with relapses.

Me: well not exactly.  Yes, it has periods of relapses and remissions but MS never goes away.

Expert: I know there isn’t a cure for MS but people do get better, right?

Me: unfortunately that’s not quite how it works and I’m happy to send you some information if you would like to learn more. (I’m wondering, what has she been reading?)

I was hoping to move the conversation on before I became entirely frustrated and said inappropriate things, after all this is the person determining if my LTD continues or not. I understand their job is to get people back to work, regardless of what that might take and what kind of work it would be.  I try to be patient with her questions because I know she is just doing her job.  But each time I am on one of the telephone reviews, when I get asked about the use of my hands, I picture myself being trained to flip burgers; never mind that I have no stamina to stand for long periods of time.  They no longer want to ask about my walking. Or my fatigue.  Or any of the other things that factored in to my stopping full-time employment.

That’s ok, I guess – they are doing their job, and since I can no longer do mine their job is to get me onto Social Security Disability Income (SSDI) and out of their company’s pockets.

Expert: So I see you applied for SSDI , how did that go?

Me: I have other income sources and do not qualify for SSDI based on my income.

Expert: I have lots of people who are making $100,000 or even $200,000 a year and still get SSDI.  How much you make doesn’t matter.

Me: (all efforts to play nice end here) – uh, you might want to check that again because there is a limit and no one making $100,000 a year will get SSDI.  SSDI is meant to be a backup for people who have no or little income.

Expert: I am sure you can make that much and still get it.

Me: I would again urge you to check this because I am certain. If you have people making $100,000 a year and still getting SSDI, I would like to know how.

Expert: I guess I should look into this.

Me: (I won’t print what i was thinking about this comment!).

And the conversation pretty much ended there. I anticipate their next review call  will be in a few short months, when I can again expect to answer ‘are you better now?’  If it’s the same case worker, I hope the expert will have done some homework about both SSDI and MS.




Night and Day



No, I’m not talking about the phases of the sun and moon, but the differences between the two major conferences I attended in June.  First up was the Consortium for MS Centers (CMSC) and my month ended with DIA 2016, the annual conference for the Drug Industry Association.

#DIA2016 was infused everywhere with the words ‘patient engagement’ while I saw very little of this labeling at #CMSC16.  What I saw and heard was just the opposite – almost every piece of #CMSC16 was about patients and there was no need to proclaim anything about patient engagement in the process.  I would have liked to see more people affected by MS as part of their formal program, but there was no doubt to me the entire meeting of #CMSC16 was about the patient and their caregivers.

#DIA2016 was the opposite – I found little evidence of the patient voice in the presentations or elsewhere.  The purpose of this major meeting of the drug industry was clearly about all phases of the development of drugs, but how patients were engaged in any of this remained a fairly vague concept. Do you know the phrase lip service? – this is exactly how the #DIA2016 experience felt to me in the large picture.

On a  brighter note, but also  on a  much smaller scale at DIA, their leadership does seem to honestly have the desire to be true to this concept of patient engagement and as such, they have a wonderful asset in Elizabeth Lincoln, as the Director of Global Engagement.  Elizabeth was in charge of preparing our class of DIA Patient Fellows for this event, and she has been a constant voice about patient engagement being central to their processes.   The leadership of DIA has encouraged the patient fellows to remain involved after the convention, and to submit ideas for presentations in 2017.  The challenge for DIA is to insist that all of their presentations include patients on the panels of experts and not just the ones constructed by patient advocates.

There are lessons for DIA to learn from attending conferences such as CMSC, where the patient is at the center of every piece of conversation. I recognize this is a major shift in thinking for the drug industry to undertake, but if they want to offer more than lip service to the idea of patient engagement, it would be a useful first step.  The flip side of this is the patient advocacy organizations and those of us who have attended DIA or anyone else who is interested can help this process by joining DIA and contribute to their patient engagement discussions. I’m in …. How about you?



Surviving June


June was bustin’ out all over
…. much like the show tune from Carousel, my June was full of excitement and lots of activity.

I started the month in Washington DC for the Consortium for MS Centers annual meeting.  It was a wonderful conference and I appreciate the extra efforts everyone made to accommodate me and my scooter.  The bad news was I woke on the last day with a pain that turned out to be shingles, and I am still suffering from serious neuropathic pain.

Exhibit promo

I took a pass on another PCORI meeting trip in June, due to the shingles.  Resting up was the best medicine for me and I tried to be smart about that.

The good folks at Ohio Health, where I go for my MS treatment, hosted a patient education event and I had the good fortune of being asked to moderate these two programs.  It was my chance to talk about patient engagement – how we can be the leader of our own health care, and of course a few plugs for iConquerMS™.  The program details were handled by Stuart Schlossman and the team at MS Views and News.

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman

I traveled to Philadelphia at the end of the month for DIA Global meeting. I was there as a patient fellow and learned a lot about that side of the pharma industry, including they weren’t particularly accommodating to patients, especially ones who were using a mobility scooter to get around. However I didn’t care because this is one gigantic complex and I needed that extra edge. I left on Saturday, and  returned home Thursday  to wrap up my month of June.


My new column, Engaging Thoughts, on Multiple Sclerosis News Today, debuted the last Monday of June. You can find the intro at as well as my first weekly column.

engaging thougths

The month didn’t seem so busy and crazy to me as I went through the days but looking back I can clearly see my June was bustin’  out.  I wonder what I can cram into July.

be well,



OhioHealth MS Clinic Education Programs


I had the opportunity to moderate MS education programs recently, sponsored by  the OhioHealth MS Clinic. I am a patient at this clinic and enjoyed being able to share my experiences as well as talk about ways we can get involved with our own MS care. I opened the program with my presentation on patient empowerment and shared ways people can be proactive with their health needs.














The program included talks from members of the OhioHealth MS Clinic team of physical therapists, occupational therapist, social worker, incontinence therapist and of course Drs. Jacqueline Nicholas and Aaron Boster.  Dr. Nicholas talked about Women’s Issues in MS, with a focus on pregnancy and how women have a different course of MS than men.  Dr. Boster presented How MS is Like a Leaky Swimming Pool, incorporating a newer theory from Dr. Stephen Krieger on how MS might be different than previously thought.

Dr. Jacqueline Nicholas speaking on Women's Issues in MS

Dr. Jacqueline Nicholas speaking on Women’s Issues in MS

These programs are a new presentation offering from MS Views and News – they coordinated the details for the program (venue, reservations, meals, etc) and OhioHealth decided on the speakers and program content.  OhioHealth was the financial sponsor of the program.  No pharmaceutical industry dollars supported the program, but there was a small display area and the various companies were invited to participate and share their information in an exhibit area separate from the speaking venue.

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman











A key point that was not just talked about, but demonstrated at these talks is OhioHealth has established a comprehensive MS care center.  What might that mean?  All the services we might possibly need as a person with MS are located at their center meaning we don’t have to travel to different sites for services – this includes:

  • Neurologists who specialize in MS
  • Infusion clinic staff, specifically trained for MS
  • Physical, occupational and speech therapists
  • Social worker knowledgeable on accessing services
  • Wheelchair/equipment fitting and repair workshop
  • Patient events on site
  • And more that I am overlooking

There were speakers from these areas and others who came to observe and also to support the programs.  Even Tisha, who handles the paperwork for patient assistance programs, came the second night to be a part of the team.  Even if they weren’t on the stage speaking, the team presence was in the room.

I am waiting to hear the results from the participant surveys that were distributed at each program, and how these programs may be improved.  It was an honor to be a part of this program and I hope the participants went home with new information and accepted the challenge to be engaged with their providers and with my favorite project iConquerMS™.










Congratulations go out to Stuart Schlossman and the MS Views & News organization for facilitating a great program, and offering their services to clinics such as OhioHealth.  I hope other agencies will see the value in having the details of MS education programs handled by this group.

The program was presented on two nights at locations north and south of Columbus; there will be additional MS education programs sponsored by OhioHealth MS Center in locations west and east of the city in October 2016.  OhioHealth MS Clinic staff is forward thinking, wants to include more for the people they serve and deserve recognition for this great step in education all of us.

be well,






Valuing Advocacy and MS Patient ‘Experts’


We all know the value of advocacy – it is the work that brings about change.  In the world of multiple sclerosis there are advocates everywhere, connecting the community of people affected with this disease with the  leaders who shape policy,  run non-profit organizations dedicated to improving quality of life, improving delivery medical care, and those who develop medical products.  It’s not unusual to be asked as an advocate to share my thoughts on an issue and I am more than happy to do so; I’ve even been known to do this without having been asked. Part of the role of an advocate is to identify issues and speak up for change where needed. This scenario pretty much describes every chronic disease community –advocates  are the go to people when others want to better understand the needs.

MS Advocates are also often viewed as patient experts and  contacted by the pharmaceutical industry for input on product design, especially in reviewing the marketing material for the multiple sclerosis drugs they own the rights to.  Successful bloggers and community leaders make particularly good marketing experts, being in the position where we are actively engaged with others who also are affected by MS, and we might be able to provide user insight not available in other ways.

A fellow blogger recently emailed several of us who have done projects with various MS drug companies in the past, wondering why several of  these companies, that make billions of dollars selling their drugs to us, are not willing to pay consultant fees for our ideas and more importantly, our time.  It’s a great question and one I would like to pose publicly.

The usual scenario for a project with one of the drug companies will be after the initial contact, we are provided with background material to read so we can think in advance about the topic and product.  Then we travel, sometimes long distances and always the day before the larger gathering, to meet in person at an always nice hotel, with very good food and comfortable beds.   I will agree that no money is spared in the travel accomodations. We spend an entire day, starting early and concluding in the late afternoon, listening to their presentations and providing feedback.  Then we either travel home that evening or head back the next day.  This is not a vacation and rarely is there time available to see any sights or enjoy the local environment. I always pack my swimsuit with the illusion that I will actually use the hotel’s pool, but that has yet to happen.  We arrive, meet, and then go home pretty much exhausted and spend another few days recovering. An in-person meeting easily consumes three full days, which is a huge commitment of time.

We do get the chance to spend time in person with like-minded advocates, and that is how I have finally been able to meet and spend time with people who I have known via their advocacy work for a much longer period of time. This is one big perk for saying yes to attending one of these meetings, but it might also be the only perk.

Why would we do this without any other type of compensation, such as a consultant fee or honorarium?  It sure isn’t for the frequent flyer miles.  And they aren’t giving us a year’s supply of their drugs for free.  Doing work pro bono for non-profit organizations is not part of this discussion – we’re all more than happy to support their work in any way possible.  Again, I have to note that I want to advance the needs of the MS community and I give consistently and often excessively of my time and talents for free to non-profit organizations; the donation of my time is worth way  more to them than if I were to open my wallet and give my small amount of money. All of my fellow advocates do the same, if not more.

What I’m particularly interested in understanding better is why when I am attending  some of these meetings, every person in the room is being paid either as an employee of the host organization or a member of the firm that found us and organized the meeting EXCEPT for the MS advocates?

Focus groups that are convened for online or telephone discussions are routinely offered compensation either as a small honorarium which is usually in the form of an Amazon gift card in a token amount; it is a nice gesture to show that our knowledge and time have value and is appreciated.

The looming question is about the differences among the various companies regarding these in-person meetings, with some who do offer compensation for our time while others insist it is against the law to give us any monetary compensation. In my thinking, the companies who do not consider  our worth and fail to compensate us are minimizing the value of the patient advocate and continue to perpetuate a system that takes advantage of our trust and good will. 

Compensation from the pharmaceutical companies who ask for our time and knowledge should be a standard part of this process and not a capriciously applied interpretation of rules and regulations. Of course this is solely my thoughts and I would welcome an open discussion with other advocates and with pharmaceutical representatives.  Please share your thoughts here or in our Facebook group Multiple Sclerosis Bloggers and Writers;  perhaps we can  then come to an understanding of expectations.


Be well,






Big Boobs & MS Blog Awards

Standard covers many chronic diseases and offers a contest each year in all of the disease categories for the top blogs.  I always wonder how these work so this year when the opportunity came up, I self-nominated my own blog. I thought just getting my name out there and having people vote for my blog would be sufficient, but I guess that isn’t the secret to cracking their elusive group.

Initially I was disappointed that my personal blog, was not selected as one of HealthLine’s top MS blogs for 2016, even though they have a lengthy list of 23 announced in a recent email.  Healthline introduces their Top MS Blogs by writing

We’ve carefully selected these blogs because they are actively working to educate, inspire, and empower their readers with frequent updates and high-quality information. If you would like to tell us about a blog, nominate them by emailing us at!”

When I was perusing the list, I found many great bloggers on the top 23 list, including some written by friends and many that are hosted by advocacy organizations like NMSS and MSAA.  But then there were others I was not familiar with and wanted to learn more about these top bloggers.

After clicking on each of these unknown, I find there are a few on the list that are inactive blogging sites, having not had anything new posted on them for months or even this year.  Their #2 listed blog has had not activity since August 2015, yet they have been given this award for their frequent updates and high-quality information. This is a bit puzzling but maybe I’m missing something.

Most surprising and entertaining to me is to find one of their suggested sites having me do a double take – I backed up and reclicked their link to be sure I was on the right page.  Their description reads:

“OzMS Blog!

MS isn’t just about pain, and it isn’t just about fatigue or losing sensation. MS is many things. On the OzMS blog, you’ll find posts about medications, new studies, and helpful gadgets, along with instructional videos for medications and injections, and information on upcoming conferences and symposiums.”


This “top MS blog” has a lengthy essay on how with just 30  minutes of self massage a day I can make my breasts larger and then closes with this weblink – Visit http://londonxcity/escorts for attractive and beautiful woman.   I find no mention of MS at all in this essay on the value of big boobs.


Whatever the vetting process for selecting these blogs must include, I have to say I am feeling less disappointed that my writings didn’t make the list because obviously they weren’t read closely or perhaps not at all. To any of you who read this and may have also been on the nominated list, keep in mind none of us write about MS for a purple badge of honor to post on our sites.  It continues for me to be enough to remember that many of you read my blog, make your comments and share my thoughts with others.  But watch out, just maybe next year I might find a better topic, such as natural breast enhancement to increase my odds of gathering attention.


be well,


PS thanks to all of you who took the time to vote and to vote often for my entry!

Shingles belong on the roof, not my body!


When  I woke Saturday morning in the king-sized bed at the Marriott, I just assumed the ache in my left side was from sitting or sleeping in the wrong position and it would go away.  It had been a busy few days at the Annual Consortium for MS Centers meeting and I recognized my body was feeling the strain of the long days. I hopped the plane and made it home, with no more pain from my side but later that evening, it again began to ache and I commented that it must be a muscle strain.

Sunday I woke still sore, but not too bad and certainly there was nothing that gave me a clue it might be something else.  It wasn’t until well after midnight and just before dawn I woke in such extreme pain I had my husband take me to the ER.

The kind ER staff took my vitals, gave me a hefty injection of morphine for the pain, wheeled me down the hall for a quick CT to look for kidney stones or other obstructions, and then came to the decision I had the shingles. There were three tiny red rash patches on my left side – that was all – and the ER doc was confident of her diagnosis.  I thanked them all for their prompt attention and kindness, their painkillers, and my prescriptions, and went home.  A few hours later the small rash had spread to larger areas and I had to agree with the doctor… I have the shingles.  AKA Herpes Zoster, a close cousin to the Chicken Pox virus varicella-zoster. The advertising theme of one manufacturers  at the conference had read ‘In MS, it starts with a flicker’ but I don’t think this is what they meant.

Exhibit promo

On the drive home I sent a text to my neurologist inquiring about the connection between shingles and my MS drug, natalizumab (Tysabri). The prompt reply said even though my immune system may be somewhat compromised by this multiple sclerosis drug, it was more likely the hectic pace I had been keeping at the conference I was attending and the after effects of major foot surgery was what made me susceptible to this viral infection. The irony is I was at a conference about MS and how to better treat people affected by the disease, and at no time did I hear shingles mentioned; but during my time there I must have been in contact with someone with an active case of one of the Zosters – either chicken pox or herpes.

I’ve considered the shingles vaccine in the  past because I have reached that recommended age, but had not pursued it because live vaccines are not ordinarily recommended for people with multiple sclerosis. Had I known what this outbreak would be like and the pain involved,  I would have gambled on the MS having a relapse and taken the shot as soon as I was eligible.  The nurse tells me once my shingles have cleared I should consider getting the vaccine and I replied there was nothing to think over – I will take that shot if it means avoiding future episodes of the shingles.


In the meantime, all I can do is wait this out. I was put on an anti-viral medication thanks to the intuitive ER doctor, and that may have cut the duration of this outbreak, but I still can’t stand to have things touch my body.  Consequently, I have spent the week in a loose-fitting nightgown and tried to move as little as necessary. I’ve cancelled all plans, including another trip next week and am happy to sit still and do nothing. I understand it will be too hot to go out this weekend anyway so I might try to make the most of this and sleep and write my way through the days ahead.

If you are eligible for the shingles vaccine and have not yet had it, do yourself the favor and get it!  The temporary discomfort to your body for the injection and your wallet for the cost can’t compare to the pain and inconvenience of an active case of the shingles.