Saturday, December 31, 2011

MS Central in 2011

A very busy year for was 2011.  Please find links to all of my MS-related posts for the year.  Happy reading!

2011: The MS Year in Review on HealthCentral

Friday, December 30, 2011

2012, Here We Come!

2012 is going to be busy!!  Just thinking about it makes me want to go take a nap...kinda, sorta...yea seriously.  Is that a good thing?  Lots to look forward to and tons of responsibilities.  Definitely no time to dilly-dally.

For the ChronicBabe New Year's blog carnival, Jenni posed a few questions:
What's your plan for the coming year? Is there something you've committed to doing, and do you have an accountability buddy? What's going to change? What's going to be freakin' awesome? Tell us! Not only do we want to know, but'll help inspire others.
January - Performances for me include the National Gallery of Art Orchestra and a concerto competition where I'm accompanying two young stars; lots of medical procedures and treatments for both my mother and myself (including a round of Rituxan); and tickets to see "The Lion King."  And my mother will start coming to my weekly "Gentle Yoga" classes.

February - 8 months before the wedding, it's time to go dress shopping!!  This most likely means a trip to NYC.  Continue yoga (you know you'll need it. Lisa).

March - At least one conference to attend; time to push the students in preparation for their upcoming solo performances.  Practice, practice, practice!!

April - Solo Festival time.  I will be accompanying a friend's entire horn studio (approx. 14 students, I think) as well as my own students and others who hire me each year.  It will be a very busy time.  The fingers better be on their best behavior, that's all I'll say about it.

May - Studio Recitals for my own students as well as for my friend's students.  Finally it's time to take a breath....oh wait, now it's probably time to think about the wedding again.

June, July, August - Work on getting the house ready for visitors in the fall.  Clear out all the old stuff, fill up several boxes for donations, and make room for Rob's things.

September - Schools starts back up and so do lessons.  Will probably have at least one conference to attend.

October - THE WEDDING!!

November, December - Holiday time again already?

Everything mentioned above are things which I'm committed to doing.  My mother (who is now officially retired) will be there to help me along the way.  How convenient is that?

During her retirement ceremony, she surprised me with a bouquet of flower and a small thank you speech.  My mom shared that I was her best friend, as well as her nurse at times.  It's true.  We've really become close during the past 12 years since we began sharing living space in DC.  We've both experienced tremendous health challenges.  A true blessing, she's always there for me and I'm there for her.  Although I want and NEED my alone time, it is comforting to have such great support and friendship at home.

This next year will be one of many transitions and challenges.  Hang on to your seat folks, it'll be a whirling, twirling, unbelievably quick ride.  2012 - here we come!!

Welcome MS Bloggers to the Community

Wednesday, December 28, 2011

Maximizing Medical Dollars

Timing medical treatments to maximize dollars saved. As the year is quickly coming to a close, I wanted to confess one of my little medical secrets. I have postponed medical treatment based on health insurance coverage and out-of-pocket cost. I have also scheduled medical procedures near the end of the year because insurance would pick up the entire tab. I’m sure that I’m not the only one.

Read this post in its entirety:

Timing Medical Treatments for Financial Reasons

Monday, December 26, 2011

Out with the Old, In with the New

Do you take note of the expiration dates of your medications, both prescription and over-the-counter?  I must admit that I do not always check the dates printed on the packaging.  But I’m here to tell you that it is an important thing to do.  In recent weeks, our household has encountered a couple of situations where taking expired medications have produced less than satisfactory results. 

The first situation involved an over-the-counter medication to help with chest congestion.  This drug is one of those which had previously been available by prescription only but is now available over-the-counter.  My mother looked through our “drug drawer” to see if we still had some Mucinex on hand - we did.  She began to take it, following the directions, but didn’t experience much improvement in her symptoms. 

I checked the original container and discovered that our bottle of pills was at least two years beyond the expiration date.  Oops.  Those pills were likely several years old and had lost their potency.  She stopped taking them.  Some drugs may become more potent or less stable over time and should not be taken past their expiration date.

Read this post in its entirety:

Out with the Old, In with the New: The Importance of Expiration Dates on Medications

Saturday, December 24, 2011

Merry Christmas!

Horns A Plenty Christmas in DC

Joined by members of the National Symphony Orchestra Horn section.  I was teaching this evening and couldn't attend but am glad to hear a portion of their performance.

My hope is that everybody has a great Christmas and New Year's.  
Health and happiness to us all.

Thursday, December 22, 2011

Carnival of MS Bloggers #104

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Celebrating FOUR years of the Carnival of MS Bloggers!

This community began as an attempt to connect the individuals online who were talking about multiple sclerosis on their personal blogs.  As a health policy blogger, I had witnessed the power of the weekly carnival to connect persons in the health policy community as well as the medical blogging community.  I wanted to do the same for patients and caregivers in the MS community who were talking about any and all aspects of their lives with MS.

The MS blogging community barely had 100 bloggers at the end of 2007.  Now there are over 600 listed blogs in the MS Blogging Community.  As new bloggers contact me, I update the listing so that everybody can be included.  Take a look, even the blog of the National MS Society is listed.  You can be too!!

(c) Julie Baker of Maybe I'm Just Lazy
If you have MS and blog about it (even if only occasionally), send me a quick email introducing yourself.  Be sure to include the URL of your blog, please.  However, I must say upfront that websites/blogs which are strictly commercial in nature will not be listed.  If you are promoting a book, a consulting business, or product, I'm sorry...that is not what this community is about.

As the founder and leader of the Carnival of MS Bloggers, I personally read as many blog posts as possible each and every week from throughout the community.  Sometimes I will select excellent blog posts to feature, however it is much appreciated when persons submit a chosen post to be included in an edition of the Carnival.  Don't be shy, send me your links!

by Judy of Peace Be With You

We MS bloggers
though quite vocal comprise a
small minority.

If ten thousand blog,
we're only .4%
of world MSers.

In our special role,
should we be spokespersons for
the ones with no voice?

Let your voice be heard.  I'm excited to continue the Carnival tradition into our FIFTH YEAR of community blogging.  I wish everybody very happy holidays and safe travels this season.  Best wishes for a healthy year in 2012.

This concludes the 104th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 5, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 3, 2012.

Thank you.

Wednesday, December 21, 2011

Pentagon Bound

On my way to the Pentagon to witness my mother's retirement ceremony.  Hope to have good pictures to show later.  :)

Sunday, December 18, 2011

Take Care of Yourself Year Round

During this crazy time, I’m sure that you’ve been busy trying to take care of things.  I was reading Karen Lee Richards’ post 10 Tips for Holiday Shopping with Chronic Pain for some great ideas regarding shopping.  She offers up solid advice which includes: make a list, shop from home, consider gift cards, map out your strategy, and dress for comfort.  I have successfully followed each suggestion.

You know, Karen has written some of the best posts over the years offering up wonderful suggestions.  There was another one, Surviving the Holidays with Chronic Pain, in which she suggested that we gives ourselves a G.I.F.T. during the season.
  • G - Guilt must go
  • I - Importance rules
  • F - Family matters
  • T - Think ahead
This is such a clever reminder of ways to help prioritize needs and wants, especially in thinking about what is important.  Whether it is deciding to skip a party in order to have more “spoons” or choosing to order a pre-cooked meal from the local grocery store to be able to spend more time with family, it is wise to determine what is MOST IMPORTANT to you.

Truly, this is something which we should do for ourselves throughout the year.  When living with rheumatoid arthritis or any other chronic illness, what is most important should often be YOU!! 

Sometimes it is difficult to make yourself a priority, especially when you are juggling work and family and managing an illness (something which can feel like a full time job).  This is something often overlooked, I think, amongst the holiday hubbub.  We still have “normal” things to take care of, one of which is our health.

Have you remembered to make yourself priority #1 this year?

Read this post in its entirety:

Making Yourself a Priority During the Holiday Season

Friday, December 16, 2011

Being a Bad Patient and Doctor Fatigue

My rheumatologist was not happy with me yesterday.  Why?  Because I skipped scheduling an appointment with her this past summer.  And….I wasn’t getting my blood tested every TWO months.  I was a bad patient.

She made it very clear that if I wasn’t going to follow up with appointments every 4-6 months and get my blood tested more regularly, then she won’t keep me as a patient.  To be her patient, I must be more….responsible.  "Understood?"  Understood.

She’s a really good doctor and I can understand where she is coming from.  She is responsible for my care and if I don’t keep up my end of the bargain, then she can’t do her job.  And I’m taking serious medications which need to be monitored (methotrexate and Rituxan specifically).  I need to remember that.

Speaking of Rituxan, I went into my appointment yesterday stating that I wanted another round of treatment in January.  Before the last time we were going to plan a round of treatment, my rheumatologist said that she wanted to wait until I began to flare before scheduling a round.  She wanted to NOT automatically schedule treatment every six months, but to try to spread them out more because the effect of long-term use is still a bit unknown.

So I was trying to spread out the treatment again this time.  But...I had been flaring mildly this fall.  I flared in July/August after stopping methotrexate for a few weeks so that I could take an antibiotic for a diverticulitis infection.  That flare mostly resolved itself by mid-September but it seems that it opened the door for inflammation to come and go this fall. 

Did I see my doctor?  Well, no.  I was waiting to see if the RA decided to get worse or get better.  The flare wasn’t outrageous, merely mild and uncomfortable at times, or maybe I was just getting used to it.  Rob just had to be careful when he tried to rub my feet so that I didn't wince or yelp in pain.

When I started the Solumedrol in November for the MS relapse, the RA pain and stiffness went right out the window.  I felt great.  So maybe the RA had been more active than I realized.  I should have called my doctor.  I probably should have had a round of Rituxan in October or September.  Maybe my MS wouldn’t have relapsed if I had done that.

I’ve just been to see so many doctors and medical facilities during the course of this year, especially this fall, that I’m tired.  I’ve got doctor fatigue.  And the appointments won’t be done for at least another month (due to Rituxan treatments in January and my need to take my mother to several appointments for some treatments she will be getting).

Since mid-October, I’ve had appointments with or for:
  1. neurologist/nurse for 6-month appointment
  2. lab for blood draw
  3. cardiologist to explore persistent “skipping heart beats”
  4. holter monitoring for 24 hours
  5. another cardiologist appointment for echocardiogram and follow-up of holter monitoring results
  6. primary care doctor for annual pap smear (for which it had been 21 months since the last one)
  7. neurologist/nurse for MS relapse
  8. FOUR days of infusion center visits for Solumedrol treatments, followed by steroid taper at home
  9. mammogram (again it had been 21 months since the last one)
  10. another cardiologist appointment for stress test which I passed with flying colors
  11. rheumatologist for over due appointment
  12. lab for blood draw
  13. neurologist/nurse for follow-up after relapse (appointment on monday)
  14. and maybe an MRI if the neuro nurse wants to get a new one; we’ll talk about it monday
That’s 16-17 trips to a doctor or medical facility in 12 weeks (not counting any visits for which I may have accompanied my mom).  During this time, I also attended 9 yoga classes (which were held at a hospital-related facility). 

No wonder I have DOCTOR FATIGUE! 

And it’s not over yet.  In January, I anticipate 7-8 trips to hospital facilities between my mother’s needs and my own.  It’s going to be another busy month.  No wonder I’m burned out just thinking about it all.  Being a full-time patient is exhausting.

Now, I’ve got to wrap this up.  I’ve got to go up to the lab to have some blood drawn.  It’s been two months since the last test and I’ve got to keep up my end of the bargain.  Blood tests every two months….or else I lose a great doctor.

Wednesday, December 14, 2011

Physical Disability and MS Progression

One of the dreaded words used in relation to multiple sclerosis is PROGRESSION. Much of what we do and hope for is a lack of disease progression over time. It is the reason why we incorporate disease-modifying drugs into our treatment regimen and the reason we hope to limit the occurrence of new symptoms and/or relapses.

When I think of the term progression, a musical composition comes to mind (an obvious connection for a musician to make). However, progression in multiple sclerosis is not like typical tonal progression in a musical composition. In music, chord progressions will have a resolution. There will be a cadence and a well-defined move from one chord to another. Chord progressions are found throughout the composition, many of them repeated several times.

Modulations of keys within a piece will have a point at which you are finally aware that you are no longer in the original key but a new one. When analyzing a piece of music, a modulation will prompt you to look back and ponder where the hints of the new key began and where remnants of the old key no longer appear. I think that progression in MS is more like that musical modulation. Perhaps it happens before you are even aware that it has definitely occurred.

Read this post in its entirety:

Evaluating the Progression of MS: Physical Disability

Monday, December 12, 2011

Do you think you should change treatments?

As soon as you were diagnosed with multiple sclerosis, you had many decisions to make. One of those was whether to use a disease-modifying drug and, subsequently, which one to use. You did your research, talked to friends and family, read online forums, and worked with your neurologist to choose an appropriate treatment plan which was right for you.

That treatment plan may have included a disease-modifying drug. What was the purpose of that drug? To slow the progression of the disease, to reduce lesions, and to limit the number of relapses you might have. Together, successful achievement of these goals hopefully prevent you from accumulating physical disability while you are on this MS journey.

But how do you know if the medication is working? MS is such an unpredictable disease with many natural ups and downs that it can be difficult to know if the medication is making a difference.

Read this post in its entirety:

When to Consider Changing Treatments

Saturday, December 10, 2011

Steroid Brain Fog and Feeling Downright Dumb

When was the last time your joints felt all loosy-goosy?  If you’ve got rheumatoid arthritis, that’s probably not something which is in your near-term memory bank. 

When was the last time your mind felt all loosy-goosy?  For me that is right about now as I’ve got steroid-mush brain.

Rheumatoid arthritis causes stiffness, swelling, and discomfort.  It can also cause brain fog all on its own.  But this is different.

Due to a recent relapse of my MS, I was given very high doses of steroids by intravenous (IV) infusion, pumping the equivalency of 1000mg of prednisone each day for 4 days.  Yes, a full gram of steroids straight into the vascular system.  Yikes.

If this sounds drastic, it is really.  But it certainly shuts down the inflammatory process in the body.  Not only does it stop my immune system from attacking the lining of my nerves, it also brings down the inflammation caused by my RA.

The result?  I currently do not have a sore joint in my body.  It is very nice.  My joints are flexible and loose.  Whoohoo!  I keep wiggling my toes and swinging my knees just to prove it.

So this sounds wonderful, you say.  There’s got to be a catch.  Well, there is.

Read this post in its entirety:

Steroid Brain Fog: What's Your Experience?

Thursday, December 8, 2011

Carnival of MS Bloggers #103

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Mothers, Love MS, Job Accommodations

by LauraX of Shine the Divine

Even life forms we consider to be simple are uniquely rich in their complexity. They cannot survive alone, but must cling to something else for nurturance. Solitude is precious, so too is connection. Finding a balance between the reality of inter-being and our cyclic desire for separation is a dance we are ever engaged in.

I am watching this in the relationships between my two teenage daughters and me, their mother as they become increasingly more independent —- “Mom, are you kidding? (exasperation) Leave me alone!” —- “Mom (in tears) what should I do?” -- a back and forth, not so gentle tug on my heart.

I see this in my own need for assistance from others due to the physical challenges resulting from Multiple Sclerosis and my longing (like my children) to do things on my own, to be by myself, and to figure things out in my own way in order to continue my human development.

There is a healthy clinging, we must acknowledge, in the midst of blossoming into who we are becoming; sometimes it is subtle, other times gripping, still despite yearning to detach, differentiate, be “ourselves,” we inter-are, and that is the way it is.


It is official. I am no longer a "cool" mom. Not even to Rosie:-( --almost 15 and for Belin being almost 18, this is not news. Somehow it is harder with the youngest, more surprising, though you'd think it would be the other way around. I am in the thick of it now! I'm not sure exactly when the turning point happened, when I became more exasperating, annoying, irritating, tear-provoking instead of the fun, funky artist mom to be proud of, the go-to hugger and comforter with absorbent shoulders for tender tears (ok that still happens, occasionally). I suppose it has been gradual, and is of course developmentally appropriate. That doesn't make the poison dart comments, eye rolling or extreme sensitivity and misunderstandings of pretty much anything I say any easier to sit with, but having been a teenager a long time ago with the same feelings about my parents back then (we are very close now!) and having taught teens for years, listening to them complain to me (I was still "cool" then, I wasn't their Mom) about their perfectly loving and admirable parents (my peers)...I get it. When I think of all that I know about child development as an educator and my own experience, it IS a relief to recognize that none of this has anything to do with Multiple Sclerosis. While it certainly has an impact on our family life, these are all par for the course growing pains that every family must endure. The really good news, and there is some, is that like all things in life, everything changes...and gauging from my relationship with my own parents, in 10 or 20 years, give or take, this too shall pass:-)

by Heidi of Journey with MS

In the midst of moving and starting a new job, my mom passed away.  My wonderful, happy, amazing mother.  She drove me crazy, but she always cared 100%.  I was her only child, and she cherished me.  I don't think I ever realized how much I cherished her until she was gone.  It's been 9 days now.  There have been 9 days of my life that she has not been on this planet. 

I miss her terribly.  I would give anything just to be able to talk to her one more time.  To hug her one more time.  To listen to her ramble one more time.  To deal with her pack-rat tendancies one more time. 

I love you mom....I hope you know how much.

by Diane J Standiford of A Stellarlife

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

by Kris Graham of National MS Society Blog

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation.  You can request reasonable accommodation under the ADA if:
  • You work for an ADA-covered employer
  • You are “qualified” to do the job; AND
  • You are a person with a disability as defined by the ADA.n>
ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations.

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:
  1. You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
  2. Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.
Be prepared! Before you request accommodations, make sure you can answer all of the following questions:
  • How is MS affecting your job, potential job, or application process?
  • Why are you requesting accommodations?
  • What accommodations or changes to your work will be effective?
  • What information will you need to provide to your employer (or potential employer)?
  • When should you speak with your employer (or potential employer)?
  • Who should you involve in the conversation?
  • How should you follow-up on your request?
  • What are your rights if things go wrong?
These resources can provide more help and information:
Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.

This concludes the 103rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 22, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 20, 2011.

Thank you.

Tuesday, December 6, 2011

The MS Relapse Survival Kit

Are you feeling more tired lately with MS symptoms acting up a bit? Have you been overdoing it? You suspect that a full-blown relapse is coming on, but it's hard to tell at first as sometimes your relapses take a week or so to really get going. Or maybe, you simply wake up one morning and can't walk, or can't see, or can't do something else important.

Bam! A relapse has begun. What are you going to do about it?

Pull out your “MS Survival Kit” and put it into action so that you can concentrate on allowing your body to heal.

The Basics:
  • The ability to ask for help.
  • Treatment for the relapse.
  • Time to rest your body.
  • Patience.
Read this post in its entirety:

What's in Your Relapse Survival Kit?

Sunday, December 4, 2011

Measuring MS Progression Over Time

Multiple sclerosis is a progressive disease. Progressing is what it does and unpredictably at that. The goal of treatment is to slow the progression down or to halt it entirely. But measuring progression is not as easy as it may sound. It takes repeated evaluations over a large period of time to document new levels of disability. It takes an even larger period of time to come to the conclusion that a certain level of disability has become permanent.

As MS symptoms can fluctuate day-to-day and visit-to-visit, it can be difficult to establish a baseline against which to try to judge how you are feeling and functioning. This is one reason why newly-diagnosed patients typically have more office visits during their first year than patients who have been diagnosed for years.

Whenever we are in the midst of a relapse (for those of us with relapsing-remitting MS), we may feel certain that our disease is getting worse. But given time, the majority of our relapse symptoms will indeed return to “normal.”

But what do you do when you look back over time and come to the conclusion that your “normal” has shifted and isn't going back to what it once was? I have experienced this situation recently. There were many visits where the neuro/nurse would say, “I think that we've just caught you on a down day.” Fortunately for me, she has an objective way to document how specific symptoms and functions are behaving on THAT particular day and incorporate the results with my self-reported status of the previous few months.

Read this post in its entirety:

Talking to Your Doctor about MS Progression