MS Central in 2011

A very busy year for MultipleSclerosisCentral.com 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

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 also...you'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

• my MS - Jamie

• Living with MS? Me too...Let's talk - Sandra

• Me and my MS - Ashley

• Jessica's Journey with MS - Jessica

• Why is Life Hard? - Sandra

• (Mis?)Adventures with MS - alibab

• My Life, My Perspective - Tonya

• AnonyMS

• Anita's Days of Happenings - Anita

• Skydiving for MS - Fred

• {M}y {S}carlet Letters - Lori

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

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

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.

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!

A Special Role?

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.

Comments for this post.

Pentagon Bound

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

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

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.

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

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

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?

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

Clinging

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:-)

Death of a mother is the first sorrow wept without her

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. 

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

STOP FIGHTING YOUR MS. Be a Lover.

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!

Ask an MS Navigator: What are job accommodations and how do I get one?

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:

• The Win-Win Approach to Reasonable Accommodations
• ADA - Your Employment Rights as an Individual With a Disability
• Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act (ADA)
• SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

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.

Comments for this post.

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?

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

Tapering Steroids after Solumedrol

As you know, I have had a recent MS relapse.  This one wasn’t one which I just wanted to “wait it out” for.  I’ve done that with very minor bumps/relapses along the road during the recent years.  In fact since switching drug treatment two years ago, my MS relapses had been more subtle and my MS has been more stable.

After this round of steroids (four days IV total and two days already high-dose orals), I needed to make a decision.  Whenever you have MS, it seems that there are always decisions to be made.  This one - to use an oral steroid taper or not.

The general consensus is that if a patient receives five days of IVSM, then an oral taper is highly recommended.  The drop-off of steroids is drastic after you’ve just had the equivalency of 5000mg of prednisone pumped into your body, then nothing.  But when a patient takes only three days of IVSM, then the taper may be skipped if desired by patient and doctor.

Thursday morning, Thanksgiving morning, I slept in a little later than anticipated.  After getting up early the previous three mornings to go to the neurology clinic for steroid infusions, I was glad to not have to set the alarm.  I knew I would be awake early enough anyways because of the steroids, so it seemed important to me to start off the day taking care of myself and to let my body do what it needed to naturally.  No alarm clock.

I also needed to decide whether to take some Decadron or not (Decadron is my oral steroid of choice as prednisone and I don’t get along too well).  I was right in between the two scenarios of whether to taper or not, but actually having had six days of steroids already (with the oral float over the weekend).  I was debating with myself. 


Read this post in its entirety:

To Taper or Not To Taper: Plummeting Steroid Levels

Having a Relapse? When to Call the Doctor?

As a patient living with MS, knowing when you are experiencing a relapse is not such an easy task. I used to think that the objective definition - new or worsening symptoms present for more than 24 hours - was a clear enough definition to inform me if my MS was relapsing or not. I was mistaken.

During the first few years of living with MS, relapses did seem to be more clear-cut. It was apparent when something new occurred or when previous symptoms got worse and I would call the nurse. Each time, she scheduled me to see the doctor the next morning and I knew what was coming. I would be sent down the hall to the infusion suite to begin a new round of intravenous steroids.

By the time I called the office, I had been experiencing the symptoms for a number of days. It was undeniable that they were not going to go away on their own. The new and/or worsening symptoms needed the help of steroids to get gone. There was only one thing which would have prevented the need for steroids and that was if a urinary tract infection (UTI) were present. So providing a quick urine sample to be tested was warranted. By the way, only once did I have a UTI when I thought I was having a relapse.


Read this post in its entirety:

Identifying the MS Relapse: When Should I Call the Doctor?

Carnival of MS Bloggers #102

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

Thanksgiving, Gratitude, and Faith

Reflecting on Abundant Beauty

by LauraX of Shine the Divine

It has been a week of gray skies, and gray emotions. Looking back and reflecting on these photos from October, the bright blue sky, reds, golds, greens and browns lifts my spirits. I'm so grateful to live in a place abundant in beauty.

Loved Ones

by Judy of Peace Be With You

A loved one’s presence

provides prized companionship

and valued support.

Buoyed by precious love,

one’s spirit takes flight and soars

past stressful moments.

Though hard times exist,

a sense of kinship prevails.

One is not alone.

Wait a Minute

by Mary of Travelogue for the Universe

Wait a minute,

just a slice of time,

does it look like a pickle slice?

Wait a minute,

catch your breath,

can you hold it,

in your hands?

Wait a minute,

did you ever hear,

"Wait a minute,"

and it really meant to

"stop?"

Wait a minute,

60 seconds,

how far does Earth travel

in that time?

Wait a minute,

adult time out,

wait a sec is

another way to say,

Wait a minute,

or a second,

take a moment,

for a change.

Our circumstances have nothing to do with our happiness

by Michael from Perspective Is Everything

I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.

Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.

What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”

These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.

Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.

1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)

These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.

Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.

Participate. Make a difference. Live a life that matters.

A Problem of Faith
by Kim of Doc, It Hurts When I Do This...

Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.

Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.

The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.

One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.

But this is not true.

The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.

In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.

Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.


Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.


The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.


When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?

The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.

The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.


The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.

Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.


The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.

The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?


This concludes the 102nd edition of the Carnival.  Thank you for making this such a wonderful community online.

The next Carnival of MS Bloggers will be hosted here on December 8, 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 6, 2011.

Thank you.

Comments for this post.

My Recent Relapse

Living in Denial

In the past week or more, I have been feeling not my best.  Each day symptoms would begin to flare and I would hope to wake up the next morning feeling better.  One such evening, it was my eyes which were out of whack.  The color pink was beginning to fade, but the next morning things were back to normal.  There was no pain to report but one eye did appear darker than the other.  (Denial.)

More annoyingly, spasticity has been increasing behind my left leg.  The muscles have felt knotted and trying to stretch them out has been painful.  Baclofen had returned to a twice a day medication with modest benefit.  For me, when spasticity increases, my knees begin to hurt from the increased pull on them.  Living with joint pain anyways, that is one which takes me a while to associate in a timely fashion.  (Denial.)

I started having more difficulty getting up from a seated position and walking up the stairs.  I didn’t come up with a good excuse for that but just thought my symptoms were “acting up.”  But Thursday’s yoga class was very difficult for me.  My legs tried to convince me that I weighed two tons, but I told them back that there were sorely mistaken.  Some of the stretches focusing on the legs almost made me want to tear up.  (Less denial.)


Read this post in its entirety:

Denying Denial: Admitting to an MS Relapse and Taking Action

Blogger Missing in Action

Wow, where have I been?!  It's been 2.5 weeks since I posted on Brass and Ivory.  I don't really have much excuse except that I haven't been motivated to get stuff up.  I may have to "go back in time" and take care of that big gap.  LOL.

One thing which has been lacking is motivation on my part.  After the new engagement, I have actually spent a little bit of time researching wedding ideas online.  Then I discovered some new computer games which have been fun to conquer.

And during the past week, my MS decided to make a definite presence in my legs.  I'm actually having a relapse, the first real one with no question of steroid need in two years.  I started IVSM on Friday and took oral steroids over the weekend.  Then I'm continuing with 3 additional days of IVSM this week before Thanksgiving.

Already improvement is evident so treatment is totally worth it.  However, I am trying to keep my mood level as even very kind helpfulness and concern creates a deep need for isolation inside.  It's like the moodiness doesn't want to smile, even if I might.  At least I know that this will be over soon and I'll have strong legs once more. 

More posts to come soon.
Lisa

Before the Doctor's Visit

If you live with MS, you will see the inside of a doctor's office more often than you might prefer. It is part of living with any chronic disease. My neurologist likes to see his patients at regular intervals and the longest I've gone between scheduled appointments was six months. Visits were much more frequent during the first year.

A positive benefit of having so many appointments is that I've developed a system of preparation which works well for my doctors and me. Ahead of time I create a “doctor visit sheet” on my computer which is then printed out to take to the appointment. It helps me to keep track of what's going on with my health, gives me a dated record, and helps my doctor in giving me the best care possible.

Creating the doctor visit file:

Using your word processing software, create a new file and label it with the name of the doctor and the date of the office visit, for example “Simsarian, 04 April 2011.” Save that file in a new folder labeled “Medical Visits.”

What information should I include on the doctor visit sheet?


Read this post in its entirety:

Preparing for Your Doctor's Visit

RA and Antibiotics

In honor of Get Smart About Antibiotics Week, November 14-20, 2011, we are delving into the subjects of bacteria, viruses, appropriate use of antibiotics, and avoiding infection.

Bacteria and Antibiotics

Before the discovery of penicillin in 1928, bacterial infections were a major cause of death.  Bacteria are single-celled organisms which can live both inside and outside of the human body, including on the surface of non-living objects.  The bacteria, streptococcus pyogenes which is responsible for strep throat and some skin infections, was previously the cause of half of all post-birth deaths before penicillin (an early antimicrobial medication) came into common use.  The bacteria, staphylococcus aureus, was fatal in 80 percent of infected wounds.  Tuberculosis and pneumonia bacteria were also horribly dangerous.

Antimicrobial medications, or antibiotics, have saved countless lives during the past 80+ years.  However, when they are not used appropriately, bacteria can become resistant to medication.  An example is the frightening methicillin-resistant S. aureus bacteria, also known as MRSA.  As a bacteria becomes resistant to one medication, a stronger antibiotic must be developed to attack the evolved bacteria.  Improper use of antibiotics is how “super bugs” are created.

Read this post in its entirety:

Antibiotics, Bacteria, Infection, and Rheumatoid Arthritis

Carnival of MS Bloggers #101

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

Unexpected Surprises

Sticks

by Laura of Inside MyStory

Have you ever done something that you felt was a pretty useless effort but you did it anyway because it was the right thing to do, never dreaming that you would get a better outcome than you should dare hope for?

Fourteen years ago I took the time to plant three white pine saplings in the back yard.  These were those free trees that are given to school children to take home and plant as part of Arbor Day celebrations. Trees is a liberal use of the word, they barely looked  like  trees, they were more like a piece of greenery that could be used in a floral arrangement than something that should be planted; a  little tuft of pine needles on the end of a stick. The fine roots at the end of those sticks were barely visible.

Rather than ignore them in their sad state, wrapped in a plastic bag, I followed the attached instructions and dug shallow holes in the back of my yard  for these three sticks.  Much to my surprise, all three of them took root.  Had I known they would actually grow, I would have planted them differently, but I had assumed they wouldn’t thrive in my care and dug three holes about three feet apart .

A few years pass, and to my surprise all three sticks survived but  I had  planted them too close together, and told a good friend to come and take the small one away to her yard, to give the others the room to grow.  She made the move while I was at work, and to my dismay she had taken the wrong tree.  Instead of the runt of the group, she had removed the middle sized white pine, a tree that had already grown to  a height of over 6 feet.

That middle sized  tree didn’t survive the shock of the move to her yard and quickly lost all its needles and was once again just a stick, just a lot taller than its humble beginnings.   The 2 foot runt was still in my yard, in the shadows of the biggest tree, which was quickly hogging all the sunlight and water.

Looking out in my yard today, I can still see that runt, struggling to grow in the shadows of the other sapling, which has now reached a height of almost 40 feet and is a magnificent specimen.   The runt is merely a dwarf version of the big tree, and has the same perfect shape in all of its now  8 foot glory.

They were the same when they went in the ground, planted in the same location, and given the same care.  I could not have projected this surprising outcome or tell you why one thrived while the other remained fairly static.

I didn’t expect these sticks to grow, but it provides me a reference as to how sometimes I go through the motions anyway of what is expected, and I end up being pleasantly surprised.

Looking at these two trees remind me of why I continue to take my daily disease modifying drug.  I’m not sure that those daily injections will ultimately make a difference in the course of my disease.  But I keep planting that needle, just in case I’m wrong. And I’m open to being pleasantly surprised.

A Letter

from Travelogue for the Universe

from the clinic,

nearly left it

there,

on the table,

by my diary,

of my shots

i have had

for

4 years

now,

but the letter,

had a feel there,

out of place,

i had a

feeling,

it was not a simple

letter

but a message

that

my study

will

end soon.

I told

my patty,

my sweet voice

who monitors

my

progress,

that

it was

weird,

being told after

4 years

that this will all

change,

somehow.

She said,

everybody felt

that way.

Seemed like I was just getting used to it,

having more faith that this is the right

regimen.

Knowing the

funding

has a lot to do

with

well,

everything,

and politics,

is right up there too,

and when we feel

powerless,

it is because

we

are.

stay tuned, you know as much as i do.

will find the results of my study in January

and discuss next steps.

4 years no exacerbation,

hope they keep me on what i am on,

whatever that turns out to be.

mary

Secondary Progressive MS, When MS Retires

by Diane J Standiford of A Stellarlife

I used to think secondary progressive MS was the worst thing that could happen to me. I mean, after all, if you start at relapsing remitting, the progression to secondary is the end of the line---all downhill from there. Well, that may be true, but I'm not living it yet. In fact, I feel better than I used to.

Back in 1990, after my initial diagnosis, my hopes were on being that 50% who never would rely on a wheel chair. It seemed, for 15 years that I had made it! But, alas, here I sit, power chair at my side---always. Oh well, you takes your chances. I refuse to accept the whole "secondary progressive now you are just a downhill headed snowball" thing. Um, I don't roll like that.

In truth, some functions have come back that I thought were gone forever. Plus, there is a certain tranquillity with not waking up each day and finding a relapse starting. As my neurologist asked me 5 years ago, "When was your last relapse?" I couldn't remember, in fact, without all the blog and Face book reading I do, I'd probably have to really think hard to recall what they were like. Much of the uncertainty of MS is now gone. Here I am. Being 54 leaves me with more health issues to worry about than MS.

Like cancer. Had it once, don't want it again. Liver problems. Had them once, don't want them again. Diabetes runs in my mom and a brother (both of whom I look just like), don't want that.

Then there is mom's Alzheimer's---like a shadow that I see every so often, hanging around...certainly don't want that. My point is that MS has crept lower on my health concerns list. Secondary progressive can do that for ya. It has shown certain limitations, but I will always continue to try and erase those. Bottom line: there is so much more I CAN do than I can't do. My focus is clear for the goal of quality of life.

Back in the '90s, I was working at a job I loved, walking hills of Seattle every day, driving, but my quality of life was pretty sucky. I would never have admitted that then, because who KNEW where I might be in 10 years, but now I can say---it was really difficult.

I feel bad for people diagnosed with MS so early now, I do. Those years BEFORE my diagnosis, almost 8, where today a MRI would have pegged me, were terrible and scary. But they passed and newly diagnosed people now seem so freaked out! (As I would have been. I would never have gotten my job with the city that afforded me such great health benefits. I might even have headed back to UGH Indiana. So MANY things I never would have felt able to do, chances I would never have taken.) Without a CURE, early diagnosis just seems more of a trouble maker.

If I found out today that I will get Alzheimer's---what good will it do me? NONE. I already play all the brain strengthening games, eat the healthy foods, exercise; not a future I'm worrying about.

Secondary progressive MS. SPMS. There are worse things to have.


This concludes the 101st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 24, 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, November 22, 2011.

Thank you.

Comments for this post.

Educating for RA Awareness

Nobody would argue that we need more rheumatoid arthritis awareness.  I admit that I didn’t know much at all about RA until I was being diagnosed with it.  Why should anybody know much about RA until it touches someone in your life, family, friends, or public figure?  No real reason unless we’re in medicine.

If you read forums or blogs discussing RA, you will certainly have come across posts which focus on “what not to say….” to patients, or which focus on what bugs us, as a community, the most when others might say it during a social interaction.  I read these posts and can sympathize with those who are frustrated, but honestly I have not encountered the same level of annoyance or anger which is often expressed.

Here are a couple hypothetical scenarios to contemplate:

Scenario #1

You and a friend are in your early 20’s.  You’ve met for coffee and are chitchatting about life - boys, jobs, heatlh.

Read this post in its entirety:

RA Awareness: Be Patient with Your Friends, Educate, Don't Hate

What does Ehlers-Danlos Syndrome have to do with MS?

When researchers, observers, and hypothesizers begin to make connections, it can become very interesting.  I recently came across listings for research studies which involve patients living with one of two disorders: multiple sclerosis and Ehlers-Danlos syndrome. 

What is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) is the name given to a diverse group of inherited connective tissue disorders involving a genetic defect in collagen.  Ehlers-Danlos syndrome, characterized by joint hypermobility, skin extensibility and tissue fragility, can affect the skin, joints, and blood vessels.  The prevalence of EDS is estimated to be approximately 1 in 400,000 in the United States, but mild cases may be under diagnosed.  In comparison, prevalence of MS is estimated to be approximately 90 in 100,000 in the United States according to the Cleveland Clinic.

There are 11 variants of EDS which have been identified to date, each with differences in genetic, biochemical, and clinical presentation.  The specific collagen defect has been identified in only six of 11 variants or types of EDS.  Overlap between variants is common and more than one third of persons with EDS do not clearly fit into a single type.

Read this post in its entirety:

Ehlers-Danlos Syndrome and MS: Is there a connection?

What's the difference between awareness and obsessing?

I thought this was particularly funny.

Trick or Treat

Happy Halloween!!  

The three little guys (Pippin, Oscar, and Musette) who allow me to live in their home have three colorful visitors on the front porch.   Pippin has made new friends, I think.

Pippin and the Porch Cats

In other news...

 I can assure you that this was definitely not a trick.  Certainly a treat. 

Rob did good.

Carnival of MS Bloggers #100

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

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

Telling my Mom

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “...now I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

If you could see past disability

by Mary K. Mennenga

To see the person

Who isn't willing to quit or given up

On living life, hope and love

Life is about

Making the most out of what I've got to work with

It's not about what I can no longer do

Instead it's learning new ways of working within the limitations

Living life has brought to all of us

Pride is a force that will need to be dealt with

It's one of the things that can defeat anyone

Remember I'm are still in control of my choices

Will I make mistakes of course that's how most learning gets done!

All I ask is your understanding that

If the reason you're helping is because you think you have to?

That kind of support feels more like pity to me

Instead of being something you want to do with me

Honestly pity is just another form of guilt

That has nothing to do with me

Walk This Way

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

connection…

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.

wow.

need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

Living Fiercely

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."


This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 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, November 8, 2011.

Thank you.

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