We Need Better Language to Discuss Advanced MS

Occasionally, readers submit questions regarding “late stage” or “end stage” MS.  People want to know about “stage 4” MS, advanced MS or MS at the end of life.  These questions are often difficult to answer, not just because of the sensitive nature of the subject, but due to the use of nonstandard terminology.

What are the types of MS?

Almost two decades ago, the National MS Society asked specialists in MS patient care and research to help develop a common language to use when discussing disease categories and characteristics.  Four types of MS were defined as relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), primary progressive MS (PPMS), and primary relapsing MS (PRMS).

What are the stages of MS?

One way to view this question is to consider a person’s experience living with MS.  The first stage may include the recognition of unexplained symptoms which initially send a person to the doctor looking for answers, followed by the diagnosis itself.  The second stage might encompass a person’s experience in learning to live with the disease, while adapting to the challenges MS places in the road.  The next stage could be evidenced as the patient accumulates moderate disability.

Read this post in its entirety:

What is "Stage 4" MS?

Protect Your Liver: Get Tested and Vaccinate Against Hepatitis

Hepatitis is a potentially fatal disease that affects 1 in 12 people worldwide, often without obvious symptoms.  As one million people die each year from chronic hepatitis infection, viral hepatitis is among the top 10 infectious disease killers, according to the CDC.    

The World Hepatitis Alliance and the World Health Organization (WHO) recognize July 28, 2012 as World Hepatitis Day in honor of Dr. Baruch Blumberg who won the 1976 Nobel Prize in Medicine for his discovery of the hepatitis B virus.  Launched in 2008, World Hepatitis Day focuses on raising awareness of the different types of hepatitis, including their cause, treatment and prevention.

What is hepatitis?

Caused by a viral infection, hepatitis is an inflammation of the liver.  Scientists have identified five unique hepatitis viruses which are referred to by type - A, B, C, D, and E - each causing serious liver disease.  According to the World Health Organization, hepatitis types B and C “lead to chronic disease in hundreds of millions of people [and] are the most common cause of liver cirrhosis and cancer.” 

Read this post in its entirety:

Hepatitis is Closer Than You Think: Are You No.12?

Looking Through an Inky Curtain

I've always been an overachiever and early bloomer.  But for some things associated with aging, it's not necessarily good to be ahead of the game.

This past week, we were working hard to prepare for a neighborhood yard sale taking place on Saturday.  We were so busy that I hardly had any time to catch up on blogs, write posts, or read a book.  I did try to avoid becoming too entirely exhausted or overworked so as to not tempt fate with provoking an MS relapse or an RA flare.

Besides living with MS and RA, I deal with health issues which are much more common.  One of those is nearsightedness.  Well, actually, my nearsightedness isn't so common as it is extreme.  I began wearing glasses at the age of 4 and currently require prescription lenses in excess of 12 diopters (a measurement of optic power of a lens).

Due to my extreme nearsightedness, I have been warned against the increased risk of developing a retinal detachment.  Ever since high school, I have been reminded time and time again to seek medical treatment immediately if I suddenly experienced flashes of light or a change in vision.  It was the fear of a retinal detachment which sent me running to the eye doctor when I first developed optic neuritis in March 2000.

On Friday when I noticed an increase in "floaters" in my left eye, I didn't think much about it except that I was mildly annoyed.  Then on Saturday, the floaters became more prominent and I wondered if I wasn't just really worn down from all of the extra work.  On Sunday, I noted some flashes of light in my peripheral vision.  Crap, I thought, I don't need a case of optic neuritis right now or some other problem.

Monday, I called my eye doctor who worked me into the schedule.  My diagnosis: posterior vitreous detachment.

The vitreous gel is a jelly-like substance which fills the space between the lens and the retina in your eye.  The vitreous membrane is a layer of collagen which separates the gel from the rest of the eye and is attached to the optic nerve.  As a normal part of aging, the vitreous gel often liquifies and may collapse.  When this happens, you may notice "floaters" which are generally harmless.

I have had small floaters visible in my right eye for a few years now.  My doctor described them as resulting from bits of the vitreous sticking together creating a shadow on the retina as light passes through the eye.  Until last week, my left eye was floater-free.

When you experience a sudden increase in floaters and/or flashes of light, it can be an indication of something more serious.  They may be a sign of retinal tears or retinal detachment.  And, it may indicate posterior vitreous detachment (PVD) as in my case.

PVD is common, occurring in 75% of the population over the age of 65, but is not uncommon in persons who are in their 40's or 50's.  Being nearsighted increases the risk of PVD.  Approximately 1 in 7 persons who develop PVD will also develop retinal tears as the vitreous membrane pulls away from the retina.  The symptoms are the same for PVDs with or without retinal tears so an immediate examination is vital as retinal tears must be treated in order to prevent retinal detachment.

The good news is that I do not currently have any retinal tears.  But the risk is still increased during the next six months and follow-up examinations will be necessary.  More good news is that gravity may help to bring these floaters somewhat out of my central line of sight.  Once the vitreous membrane completely detaches from the retina, it will no longer cause the flashes of light and the risk of retinal tearing disappears. 

I will mostly likely develop posterior vitreous detachment in my right eye within the next couple of years.  Ah, aging. 

Carnival of MS Bloggers #119

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

MS Poetry and Public Profiles

Ode To My Left Leg 

by Janie at PasstheMSplease

I really miss my left leg

It’s been so good to me

It seems that it has run its course

It’s dead as it can be.

I know I ask a lot of it

Through each and every day

I thought that I was good to it

I don’t know what else to say.

I know I bumped it into chairs

The walls, the desks, the drawers

But lately we have done just fine

And stayed off the cold, hard floors.

Maybe I have asked too much

To try and walk like others

But I have not one single time

Been jealous of another’s.

I love you, I can tell you now

‘Though you seem not to care

Although this love is with the left

A love I have to share.

I hope that your vacation time

Will be short and you’ll return

Please don’t stay long, and hurry back

For your presence I still yearn.

And so until that happy day

I’ll hobble on one leg

Please hurry home, I miss you so

I really HATE to beg!!!!

Conversation on d Boat

by Stax at Multiple Sclerosis & Me

i hadda preface this post by giving a little history.  I guess that most people are somewhat curious, so alot of times, i'll be out and about and someone will ask me what happened or what's wrong.  Other times, the question is "did u have foot surgery, or did you hurt your leg?"  When i'm asked those type of questions, my standard answer is, "I wish i had surgery (or was injured) because that would mean that i'll heal...no, i have Multiple Sclerosis," and the conversation will either stop there (sometimes, i can tell that the person is a little embarrassed (maybe because they wished they weren't so fas - not that it bothers me?) or go on.

so...Saturday was a boatride on Lake Lanier.  We are in the middle of a heatwave - the high was 106 degrees, so even though i was feeling somewhat alright (sitting in AC in the car), my body was not.  J carried me to the boat - as the people in the south say, "Bless his heart" because it wasn't a short walk (he actually split the distance in 2 and took a lil rest in between) and then even when we got on the boat, KI took me up the stairs - i'm still a little unsure of how he made that happen.  so in other words, ALL the passengers knew that obviously, there was something "wrong" with me. 

Anyhoo, so we set up my chair and get situated and i'm sitting trying to get cool and this chick comes up to me an introduces herself and the conversation goes like this:

blah blah blah

Chick, "So...did you have back surgery?  what's wrong?"

Me, my standard answer, "no (remember my
little history)...I have Mulitple Sclerosis" (I always say the whole
thing because i'm not sure how many people actually know what MS is)

chick (really enthusiastically): "Wonderful!!!"  

Me (in my head): eh?  really?? u not serious are u???  out loud: (not a damn thing - good thing too)  I think i was a little taken aback

she then went on to talk about how it was great that i was out and enjoying the boatride and "taking a wine" as only i can and it was refreshing to see that i wasn't letting it keep me back.  oh, okay...thanks :-)  but i just couldn't believe it when the 1st word out of her mouth after being told that i have MS was, "WONDERFUL".  LOL - i had to give her a bligh after she continued.

Stop Horsing Around with MS 

by Laura at Inside MyStory

Did anyone else catch the recent chat on Fox News about Ann Romney, and her Multiple Sclerosis? Normally I would not watch Fox News, but we were staying with friends on a trip and they had their television tuned to Sunday House Call.

Of course I paused to listen to this story because of the topic, and they included a brief part of an interview they had done earlier in June with Ann Romney. I know she has come under much criticism recently about her portrayal of MS, the resources available to her, and all the other baggage that comes with being a high profile public personality. I have nothing to say about her personally, because that is a lesson I learned very quickly with MS – we are all so different but yet the same in living with this disease. I hope her MS stays in remission forever, just like I wish well for every one out there who lives with this MonSter, and this blog is not about her.

What I do want to talk about is this glaring example of how little some medical experts know about MS and the way it is portrayed in the media. Up first for this report was Dr. Marc Siegel, an internal medicine doctor and associate professor at New York University (NYU) Medical School. He was also the person who did a lengthy sit-down interview with her in mid-June about her MS.

In his brief few minutes of air time, there were several points he made that had me screaming “no!!!!!.” He talked about the disease modifying therapies available and said they all have serious risks including Lemtrada, which causes problems with platelets and that another MS drug causes encephalitis. For the record, Lemtrada is not available to us even though the idea of a few IV treatments and then skipping it for a year is appealing; Lemtrada has only recently been delivered to the U.S. Federal Drug Administration and it’s European counterpoint for approval.

Encephalitis from an MS drug? I am guessing Dr. Siegel was referring to progressive multifocal leukoencephalitis that is a rare but documented problem with Tysabri. He threw the phrase out there in association with treatment that makes it sound like a regular problem, and I wish if he was going to throw these possible complications with treatment out there, he would take a moment to discuss the risk /benefit decision we all face.

It wasn’t enough that he was misleading and spreading fear about the drugs. He then went on to talk about Ann Romney’s use of horseback riding for her therapy and talked about the value of the LOVE between a horse and its rider. He said nothing about the therapeutic value of RIDING a horse. Hippotherapy is an approved therapy for many different disorders; for people with MS, the movement of riding a horse mimics the human walking motions and improves core stability. The body responds to riding a horse with improved balance, stronger core muscles and can even reduce spasticity. Just like petting a dog will lower blood pressure, there probably is a benefit to bonding with a horse, but the therapeutic value for people with MS is much more than love.

The female anchor of the program did interject that “horses are magical” and maybe that’s my problem- if I just believed more in magic and got a pony, my MS would disappear.

More than once, Dr. Siegel mentioned how Ann Romney has beat MS. Wow, that’s an impressive statement because the last I checked, no one has beat MS- we merely learn to live with it. He also credited her faith and being strong as the key to her beating MS. I can’t help but wonder how that makes the many people with MS who I know who haven’t beat MS, despite being strong and faithful.

Perhaps the most confounding statement Dr. Siegel made was that often the best decision to make for patients is to not treat their MS, and that it is often better to wait because of the side effects of the MS drugs. A louder scream comes from me on this one…… argh!!! The most recent recommendations of the MS Consortium of Research Centers (MSCRC) and the FDA approved guidelines for these drugs, is to treat people with MS immediately with their first symptoms – clinically isolated syndrome (CIS) is recognized as the first sign that a person may later develop MS. The earlier the treatment is begun, the better the odds that the disease progression can be slowed. If a person is beyond CIS and has MS, it would be unthinkable to not offer that patient a treatment option.

The second doctor to speak about Ann Romney’s MS, was David Samadi, MD, also from New York, who is the “Chief of Robotics and Minimally Invasive Surgery at Mount Sinai School of Medicine,” according to the Fox website. I had hoped that this doctor would present solid information on MS, but at the time I did not know his credentials or I wouldn’t have held that hope. MS is far removed from the black and white world of robotic medicine.

Dr. Samadi stated that MS is diagnosed by the evidence of plaques showing on MRI’s and through the analysis of the cerebral spinal fluid (CSF) from a lumbar puncture. He completely ignores the documented fact that not all CSF will be positive and about 15% of people with MS have negative lumbar punctures. The same is true for the MRI imaging – it is very much possible to have MS and not have visible lesions. There are a number of factors that go into this, including low powered MRI’s, incorrect MRI software application, or radiologists misreading the MRI images. There is growing evidence that MS lesions/plaques are not confined to the brain’s white matter and may be lurking in the gray matter as well. High powered MRI imaging is being used to see if perhaps this is where MS hides in the early stages. He said nothing about the clinical neurological exam or the role the patient’s history plays in the diagnostic process.

He echoed Dr. Seigel’s view that Ann Romney is a strong woman and because of that and her faith, she has her MS in control and she should be a role model for the rest of us living with MS. Unfortunately few of us have her resources so it is somewhat difficult to shadow her coping style.

As a final note, he proclaimed that since she only has Relapsing Remitting MS, she just has the mild type of MS and she will do well. Can you hear me letting loose with a primal scream at the TV at this point? Obviously he doesn’t know the statistics of how many people with RRMS will move on to secondary progressive MS (SPMS) and accumulating disability.

If you want to practice your very own screams at the screen, you can view the Fox News discussion at

http://video.foxnews.com/v/1714450639001/ann-romneys-battle-with-multiple-sclerosis/?playlist_id=930909755001

This is not the first and probably not the last time, where the talking heads on TV will get it wrong explaining Multiple Sclerosis. Dr. Nancy Snyderman , the Today Show medical expert, usually makes me scream at the TV as well; most recently she told viewers that men having MS is rare. But what should we expect from a doctor trained in oncology or these other doctors who deal with robots and internal medicine rather than neurology? They may be wonderful in their own fields, but they need to not present themselves as experts on a topic that they haven’t mastered, and judging from the false statements they make, maybe they even skipped the neurology rotation in med school.

Would it be too much to ask the networks to invite a real expert to explain MS? At least neurologists understand that living with MS is more complex than having religious faith, just wishing it to go away, and loving a horse.

This concludes the 119th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 2, 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, July 31, 2012.

Thank you.

Comments for this post.

OwnOurOwnHealth.Org

A public service message meant to help put patients in the driver's seat. Brought to you by the @s4pm community, a collaboration between members of the Society for Participatory Medicine (participatorymedicine.org). For more, visit OwnOurOwnHealth.org.

To be in the running for a Social Teeth agency campaign, SPM's video needs 1000 hits (views, shares, likes) by the end of the month.  Go! Watch! Share! We all *all* patients!

Gallop, Inspiring Short Film from Shift MS

Excellent video produced by my friends at Shift MS. 
Great job, George!!

Crazy, Stupid Heat!

Heat sensitivity is a popular topic in the summer months, especially when you have multiple sclerosis. It has been a popular topic on my mind as of late with temperatures reaching 103°F with heat index values between 110°F and 115°F.

Did you know that persons with MS may have a decreased ability to regulate body temperature?

Beyond heat sensitivity and Uthoff’s phenomenon, MS patients may have difficulty in regulating their body temperature due to impaired neural control of autonomic and endocrine functions (Davis, 2010). The part of the brain that senses core body temperature and regulates it to about 98.6°F, the preoptic anterior hypothalamus, can be affected by MS, allowing for atypical fluctuations in body temperature.

In fact, hypothermia has been documented in small numbers of MS patients (Davis, 2010) with core temperatures ranging from to 86°F to 95°F. This can be problematic for patients when serious infections may be masked due to the absence of a typical fever response. I know that my “normal” core body temperature is closer to 97°F than 98.6°F. If I’m registering 98.6°F or higher, then I have a fever (for me).

Read this post in its entirety:

Heat and MS: An Impaired Ability to Regulate Temperature

Carnival of MS Bloggers #118

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

MS in the Movies, Best and Worse Things to Do After Diagnosis

Movie Time!

by Thomas at BiPolar, MS, and as handsome as ever

You know, there are days when you think you're doing real well with these disorders. This morning I was up early, shared breakfast with my wife, sent her on her way, and then did some reading. Following a chapter of a Buffy the Vampire Slayer story (yes, I enjoy the classics), I did my stretches, exercises, and then hit the road for a mile walk, headphones and all. Back home, I grabbed the newspaper, plopped on the couch, opened the paper and immediately fell asleep for one hour. This set back all other planned activities. Yesterday MS/BP let me ride my bike to run errands, then work in the yard, and get a lot of reading done, including Chris Matthews' book on JFK. Thought I could get two days in a row. Silly MS boy. Now since I'm all messed up and foggy as a London night, I'll try this.

Let's go to the movies!

It's Tuesday as I write this and I usually take in a flick today at one of the local movie houses. It's also two dollar popcorn day, and if the person taking the money and giving you your ticket is "of a certain age", I can squeeze in as a senior. Once you hit 55, and have a pension to live on, the words "early bird special" start coming out of your mouth. So over this summer I've seen everything from Prometheus to Abraham Lincoln, Vampire Slayer. I'll leave reviews of those epics to others, but just a note to the Abe Lincoln producers - please remember to keep that mole on his face all the way through the film, and by the way, during his Presidency, he had two other kids aside from Willie. I know, I know it's all made up. Alas, that's where some kids get their history from.

Anyway, below is a list of movies (and TV show) that featured a character who was either diagnosed bipolar or with MS. No one would ever figure on someone who had both, right?

Bipolar disorder: Splendor in the Grass (1961), A Woman Under the Influence (1974), Mr. Jones (1993), Michael Clayton (2007), Observe and Report (2009), The Informant! (2009), Shine (1996), 3 (2012), Homeland (TV) (2012), Lust for Life (1956), Frances (1982), Cobb (1994), Call Me Anna (1990), A Fine Madness (1966), Bulworth (1998) (for the rap scene alone)

Multiple Sclerosis: Hillary and Jackie (1998), Duet for One (1986), The West Wing (TV) (1999)

Bipolar is winning the race for most characters, probably because if you need someone manic, you can get it, if you need someone depressed, eventually you'll get that. Now these lists are not complete certainly and are from various sources around the web. You can find most if not all at Netflix or Amazon. I have seen some of these films and I intend to see more, but here's the one I'd like to talk about:

Duet for One. This is a small film, and is really based on the life of Jacqueline du Pre', so I guess you can watch either of the MS films noted here and get the same idea (See, it's not that Hillary and not that Jackie - it's the du Pre' sisters, Hillary and Jackie). Anyway, Julie Andrews was nominated for a Golden Globe for her performance as a concert violinist who contracts MS, and the movie is about how the decisions of her life after diagnosis affect those around her. You also get to see Julie undress, have sex with Liam Neeson, and say the F word a lot, which to a mind that still sees Mary Poppins and Maria from Sound of Music is a little disconcerting, but Ms. Andrews is a fine actress, and is supported by such greats as Max Von Sydow and Alan Bates who I think was in every British movie during the 70s and 80s.

But here's what bothered me. The character Ms. Andrews plays, Stephanie, constantly refers to herself as "a cripple." Now this movie was made in 1986, and since we're looking at 25 years ago, there were limited treatments, if any, and so she deteriorated at a faster pace, but a cripple? Perhaps I'm looking at the film (and before that a successful stage play) from too far away, or perhaps its a British thing.

But take a look at it yourself....

The whole thing is on You Tube. 10 parts but easy to follow.




Do you think we could ask Martin Sheen if he'd like to be President again? I'd rather have the guy with the MS than what we've got now on either side. Heck, we did pretty well with the guy in wheelchair. Oooops, no politics. Sorry. I'll be viewing Hillary and Jackie this week and will add some comments later.

Of course, these diseases are always good ones to flare up just when the story needs a push.

I'd like to close with a bit of dialogue from the film, this being said by Stephanie to her doctor.

"Sitting there year after year listening to miserable people like me tell you how the world does destroy them. Have you ever once felt anything like the pain they feel? All the despair, all the fear? You make your living from their suffering and you don't understand a shred of it. Anyone of us is more qualified to speak than you because we have been there. We're still there."

AKA-If you ain't got it, you don't get it. Other films? or TV shows?

The Five Worst Things I Have Done Since Being Diagnosed with MS 

by Marie Cooper of MS Renegade 

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

Mistake #1: Not immediately making long-term financial plans.

I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.

Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.

After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now. I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that.

Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for disability, now that my savings are gone and I am in dire financial straits.

Mistake #2: Not immediately looking into more accessible housing.

I adore my cozy, 1930s seashore home. It is my dream house. I bought it completely on my own, with no help from anyone, and I have been inordinately proud of it. When we moved in I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.

I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take monumental effort to get up the three small steps from the back door to the kitchen. I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now that the market is horrendous, I will be lucky to get any equity out of it at all.

Mistake #3: Not having a frank discussion with my children about my illness in the beginning.

I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am. I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared together is so important.

Mistake #4: Not taking people up on their offers to help.

My amazing friends and my wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking when they are repeatedly turned away.

Mistake #5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. Yeah, really helpful coping mechanisms.

BOTTOM LINE: You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. My denial has cost me dearly.

The Five Best Things I Have Done Since Being Diagnosed with MS 

by
Marie Cooper of MS Renegade

As I noted in last month’s post, the mistakes I made since being diagnosed with MS were all pretty big and dramatic. The best things I have done since diagnosis are mostly small and practical, banal even, but they helped all the same.

Best Thing #1: Writing my blogs 

Hands down, blogging is the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there or try to have anything published.

Then came blogging. I had been thinking about writing a blog for a while, but I was really apprehensive. I took my time, did a lot of preparation and then, nervously, took the leap.

Well, I have had the best time writing these blogs! My readers are utterly wonderful and many have become true friends. I have received feedback that is so touching, so kind and so encouraging it has been a real gift.

My point here is, do what you love. You deserve it. It’s time. When we have a chronic illness, it is easy to fall into a life that is limited. We don’t feel well and everything is an effort. But try and ask yourself, what is the passion that you have been too busy for? This is the chance to cultivate the things that are most meaningful to you.

Best Thing #2: I acknowledge what my body is telling me. 

Me? Listen to my body?!? Hahahahahahahaha. The only thing I ever listened to was the voice in my head that ran persistently into the future, telling me all the things I had to do. It. Never. Stopped. For. One. Minute. Then came MS.

In the beginning, I ignored my symptoms. I DEFIED them. I kept working, cleaning, shopping, doing, doing, doing. And I paid the price with regular relapses, needing a course of IV steroids to get me functioning again. I had more and more residual deficits each time. It took forever, but I finally allowed myself to respect the fact that I needed to listen for cues and anticipate my needs before they got to a crisis point.

Best Thing # 3: My “overbed” table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world. After my diagnosis with MS, I was juggling my entire life on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” I am a nurse and I have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want those memories lingering near my own bed.

So I resisted. And I spilled things and lost things and sat on things because my bed was a disorganized mess. In desperation, I priced what are called “overbed” tables. I was delighted to find they had a different name: laptop tables!! Well, these didn’t conjure up memories of basins or bedpans for me. What’s more, they were reasonably priced. So I bought one. And I love, love, love it.

It has a tilt top side for my laptop, a solid side for books, cups, plates, etc., and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my iPod, my mobile phone, CDs, pens and notepads. It is like another limb.

Best Thing #4: Reach-y thingies

Whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have pitched to the floor.

It took years before it occurred to me, but with a lightning strike of brilliance (yes, that is sarcasm), I finally bought several reach-y thingies. I do believe that is the technical name for them. [Note: the technical name is reachers.]

I bought ones that fold in half for the kitchen and bedroom, and that have wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually spilling. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing #5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of “Best Things” list? Having MS certainly isn’t the best of anything.

I resisted the MS label for a long, long time. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me, it was damaging when I wasn’t taking care of myself or accepting help because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you disregard it. By admitting I have it, I am free to take better care of myself.

That is the uniting theme here in my Five Best Things – do what is best for you. What is best to make your life simpler, happier, healthier. I am not a fan of the saying, “If life gives you lemons, make lemonade.” Life is hard enough at the best of times. My opinion is, if life gives you lemons then you have too many dang lemons. And I don’t even like lemonade. But we are stuck with this disease and taking good care of ourselves is the best way to cope. I suppose that could be considered a form of making lemonade out of lemons. Although if I have to make something, then what I’d really like is lemon vodka. :)


This concludes the 118th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 19, 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, July 17, 2012.

Thank you.

Comments for this post.

Illustrate Your RA

When you think of your experience with RA, do you picture yourself as being independent?  Do you consciously seek information and gather the knowledge necessary to empower yourself?  Do you imagine your healthcare team as your allies or as your governors?

Recently I was discussing possible imagery to represent a patient’s journey toward independence and empowerment with a person who works in marketing.  One thing I found interesting was that each of the scenarios presented began with a boring, drab, or unpleasant setting.  Or with a patient feeling left out (and put out) after witnessing another begin her own journey alone.  This didn’t feel quite right to me.

When I think back to the beginning of my own RA journey and the diagnosis specifically, I can picture starting down various roads and being turned back without answers.  I see now that a lack of recognition of early RA (and later acute RA which didn’t fit the “textbook” examples) by my doctors resulted in detours certainly, but eventually I did get on the correct path.  At this point, I was dependent upon the expertise of my  rheumatologist to narrow down treatment choices and provide guidance on next steps.

Read this post in its entirety:

Independence and Empowerment: How Do You Imagine Your Journey With RA?