#LivingwithMS Tweet Chat

Our friends over at @Healthline, @MS_Focus and @MattCavallo hosted a great Tweet Chat this afternoon and linked below is the transcript. I invite you to read through this as you might find some good information, tips and other things about living with MS. 

Here are the topics discussed: 

Q1 What would you say is the most difficult aspect of living with Multiple Sclerosis?

Q2 How have you adapted to or managed the difficult aspects of living with MS

Q3 With any disease, it’s crucial to weigh benefits vs. risks of specific treatment options. Have you discussed meds with doctor?

Q4 Where have you found emotional support for dealing with MS?

Q5 What advice would you give to someone who has just been diagnosed with MS?

Check it out here: Transcript of #LivingwithMS Tweet Chat

Hope y’all are doing okay.

Best,

Christie

It’s always good to be reminded that stressing out is not good for your MS

Whether you are newly diagnosed or have been living with MS for a while, the article I linked below is a good read on the impact of stress on MS. There’s a great list, towards the end, that features ways to reduce stress and ultimately help us feel better. That’s the hope anyway!

True…

• Stress overheats the body, which then may aggravate our MS symptoms

• Stress may also reduce the effects of our MS meds

• Advice? Make stress reduction a priority in your life

I know, I know. Nothing new here but we all know that stress is bad and this article serves as a great reminder.

You can read the article here: stressing-out-ms

Hope everyone is chillin’

Best,

C.

Source: everydayhealth.com, “Stressing Out May Worsen MS Symptoms” Karen Appold, 2/14/13

What's on my (MS) Mind?

Every social media platform asks me what I am thinking about, what’s happening, what’s on my mind. Well, let me tell you. I have a lot on my mind. My mind is inundated with lots of things, some important, some just my own inner ramblings. 

Social Media Universe: So, Christie, what’s on your mind?

Christie: (struggling to come up with something in 140 characters or less) Well, at the moment I have a lot on my MS mind. This is just a sampling:

• I am wondering when my vertigo will stop. I had another bout of it last night at the office. Make the spinning stop. Make the spinning stop. 
• I would like to be friends with the following people: Oprah Winfrey, Ellen DeGeneres, Phil of the Amazing Race, the president of the National MS Society, Flo Fox. To name just a few. In my eyes and in my heart, these fine folks are heroes. 
• I want to go to Cuba but worry that the heat and humidity will kick my MS ass!
• I need to kick up my training routine up a bit if I am going to ride from Bay to Bay in the MS Bike Ride. 20 minutes on the trainer isn’t going to cut the mustard!
• Woman’s Day. Page 127. That’s me. Holy crap! I am in a state of disbelief even though I sent them the essay, had my makeup done and had my photograph taken by a professional photographer who spent over an hour with me snapping pictures of this mug! Really!
• Feeling anxious about forgetting stuff all the time. Especially taking my nerve pain medication. I wrote tips on a blog post and should probably take my own advice, right?
• That new lesion along my spinal cord, that’s what’s on my mind. Crap. Here I was going along my merry way with my daily shots of Copaxone thinking I was treating my MS. Crap, crap, crap.  
• “I am not impressed with your physical exam” said my neuro. Now that’s funny! He means, of course, that I passed my physical exam.  Too bad the rest of my appointment got serious.
• I have injected myself with Copaxone nearly 700 times to no avail. New lesion.
• "Would you like Tysabri, Gilenya, Rebif or participation in a clinical trial?" Hmmm. Just a glass of water please. 
• My cat had a kitty heart attack yet after a week in the hospital, she’s brand new! What a relief. I love her so much, that sweet little princess. Yes, I realize this makes me seem like one of those crazy cat ladies. I do not care. I love my cat. 
• 1/1000 chance of getting PML while on Tysabri. Or, is it 1/10,000. I would like to choose the second probably factor please. Is that on the menu? That I can live with.
• Weight gain while on Gilenya? No thanks. I am trying to shed a few pounds.
• My neuro assured me that the US death of the MSer on Gilenya was because he/she was mismanaged by his/her doctor. That’s bull#@($*&@( and I hope that doctor is not practicing anymore. What kind of world are we living in?

That's enough for now. I could go on. How are you? What’s on your mind? 

Be well,

Christie

My MS Survival Guide - Tip #6 Pilates!

Hi Everyone,

Last month I posted my MS Survival Guide: How to Improve Coping Skills and Tame that Monster! That monster being that crazy person I can sometimes turn into if I do not manage things appropriately. So, in addition to Breathe, Meditate, Grieve (still working on this one), Improvise and Journal, I would like to add tip #6, Sign Up for Pilates!  

6. Sign up for Pilates. Balance, body awareness, stress reduction, flexibility and strength.  These are good things right? I should say so which is why I just signed up for my first Pilates class. I must admit, however, that I am a little bit nervous. I niggle about what may happen while I’m on the Reformer. Will my Lhermitte’s fire up? I am not in the mood for the spine buzz thank you very much. Will my body heat up and cause my legs to burn? Will I have enough energy? Definitely some downsides. Luckily, the upsides outweigh all this and I am looking forward to having Pilates work wonders for my stress and, in turn, work wonders for my MS. I am ready!  I’ll let you know how it goes!

P.S. Active MSers has a great article on Pilates and MS. Click here to read it.

Best,

Christie 

Niggle

Niggle.  This is a GREAT word.  First because niggle rhymes with wiggle and wiggle always makes me giggle. Second because it seems so very British and I think the Brits have a great way with words. I haven’t heard many Americans use this word, have you?  Besides, niggle keeps coming up in my spell check suggesting that I try sniggle instead.  To sniggle is to fish for eels by thrusting a baited hook into their lurking places.  Gross. Let’s move on.  One more and final reason why niggle is a GREAT word is because it is a really good way to describe what many MSers go through on a daily basis.  Well, at least what I am putting myself through every day.  Let me explain. 

According to my sources, the definition of niggle is:  worry unnecessarily or excessively.  To niggle is to be preoccupied with details.  To niggle is to worry, to fret, to fuss. Admittedly, I niggle every day about every little feeling in my body. The burning in my legs, the numbing in my fingers and the blue spots I see with my left eye are all things I niggle about. I find that as I become more aware of my body and its sensations I tend to worry more.  I fret more.  Allow me to share a few highlights of my daily niggling.

“My legs are burning up.  Is this my normal?”  I niggle. “Or, is this another obnoxious relapse?”  I niggle some more.  “Nope, these symptoms are the same that I’ve had for the last few months.  Silly.  It’s just a little warmer outside so the burning is stronger.  After all, it is 100 degrees out there!”  I niggle next about the tingling in my right hand.  “All I did was water the plants this afternoon!  Why does my hand feel so dead?  Am I having a disabling relapse?”  I niggle.  “Your hand has felt like this for the last year”, I remind myself, “It’s just flaring up a wee bit”.  “But what if it never gets better?”  Good grief.  All this niggling!  I always revert back to my greatest source of niggling, my left eye. I announce to my partner, my kitties, my neighbors, whoever is listening, “just to let you know, I am seeing blue lights and my left eye is NOT right today”.  I niggle.  Again with the routine of covering my right eye with my hand and observing what I see with my gimp left eye.  I switch, covering my left eye and observing what I see with my right eye.  I compare notes and I niggle. “Oh brother, I am not seeing things clearly and was that a sharp shooting pain I just felt?  Do I need to call the neuro doc?”  I remind myself that I’ve been through this before and the neuro doc has assured me that my retina will re-adjust.  And so it goes.  Niggle. Repeat. Every. Day. 

Yes, the word niggle is perfect for us MSers but seriously cannot be good for an MSer like me to go through every day.  I am an official MS niggler and ‘tis no good. Aren’t I supposed to eliminate stressors?  

I really should take a break to meditate. 

OMMMMM... 

Don't Be the Patient

Be the friend.  Be the colleague.  Be the partner, lover, and best friend.  Be the artist.  Be the writer.  Be the surfer, swimmer, and diver.  Be the gardener.  Be the cyclist.  Be the horn player, conductor, and flutist.  Be the bingo player.  Be the deep sea fisher.  Be the cousin, sister, and daughter.  Be the baker.  Be the photographer.  Be the wine connoisseur, cheese monger, and chef.  Be the person other than just the “Multiple Sclerosis” patient.  

C

hy·po·chon·dri·a [hahy-puh-kon-dree-uh]

–noun

1.  Also, hy·po·chon·dri·a·sis  [hahy-poh-kuhn-drahy-uh-sis]  Psychiatry . an excessive preoccupation with one's health, usually focusing on some particular symptom, as cardiac or gastric problems.

2.  excessive worry or talk about one's health.


So, do I suffer from hypochondria or have I developed new symptoms? 

For example, sometimes at work I struggle to solve a problem and it’s not long before I am wiping the showers of sweat from my brow.  I find myself thinking, “oh boy, I really need to figure this out, it’s what I’m getting paid for”!  Of course I’m convinced it’s a cognitive function change and forget that the problem at hand really is difficult.  Half of the people I work with cannot not figure this out!  Besides, cognition also includes the ability to organize and plan.  If you saw my task management system you would worry that I am in need of a therapist to work through my OCD issues. 

Recently, however, my left eye has been causing me a lot of grief.  It hurts which I don’t like.  I look to the left, it hurts. I look to the right, it hurts.  I swear I’ve felt something like this before in the past, long before my diagnosis.  I assure myself that maybe my eye is tired, from strain. After all, my job requires me to look at my computer all day.  My eye also feels a bit swollen and yet when I look in the mirror, everything looks completely normal.  A lovely hazel eyeball is what I see.  No swelling, no redness.  I blink a few times, just to be sure.  No swelling, no redness.  Oh dear.  Naturally I am anxious and need to find out what’s wrong.  Immediately. 

Like anyone else in need of instant medical information, I scan the web for the MS symptoms that will perfectly describe what I’m feeling.   Optic Neuritis?  Maybe.  I’ve got pain and I’m pretty sure the color saturation is now different than my other eye.  I cover my right eye with my hand and then switch over to cover my left eye.  Yep.  Something’s off here.  I do it again.  And, once more just to be sure.  For good luck.  Yep.  The saturation is definitely off.  Everything looks flat through my left eye and normal through my right eye.  Uncontrolled eye movements?  Nope.  Double vision?  Nope.  Then I read “blindness” and definitely begin to panic.  I frantically try to picture my last scan.  I will freak out if I go blind.  Compounded with my hearing impairment, I will become the modern day Helen Keller.  I’d have to learn a new language because I don’t know Braille.  I barely learned French and Italian. Ciao.  Come va?  Bonjour.  Comment allez-vous?  I try harder to remember the MRI scan.  “Where exactly is the new lesion?” I ask myself, “is it near my freakin’ optic nerve”?  I look at Google images of brains, eye balls, and nerves.   Hundreds of them.  I remind myself, “the doc said that I would not feel any symptoms from this new lesion”.  Then why do you suppose I am having all of these symptoms?  Still, I should call him just in case I’m remembering something wrong.   Have I talked myself into getting optic neuritis?  Or, is something else wrong?  Am I simply a hypochondriac?  I am going to drive myself nuts.  Well, could ‘ya blame me? 

Stay tuned.   I’ve got doctor’s appointment tomorrow morning.

C

My List of Stress Reducers

There is no cure for folks who live with CIS (or MS for that matter) and one of the best things I can do to feel better, aside from taking drugs, is manage my stress.  I’ve been thinking about stress all week particularly because I have a demanding and exhausting job.

So, here is my list of stress relievers: 

• Quit my job.  This is nice in theory but leaving the workforce is not an option.  I have responsibilities and I am not a self-made millionaire.  Instead, I will begin figuring out the color my parachute in the hopes of making my heart flutter. 
• Exercise.  This causes me stress.  And, this is problematic.  When I go walking, my nerves get very active.  From the bottoms of my feet up through my hips, everything tingles after just one lap around my office building.  So now I get anxious when I think about exercise.  I don’t want my whole body to electrify.  Yet, physical activity is very important for people with neurological diseases.  
• That being said, I think yoga will help.  This will be an excellent way to manage the disease.  My sister is nudging me, reminding me how important this is and to get in a class right away. Om. Breathe. Meditation. I like the sound of this. 
• Acupuncture.  Balancing the flow of energy through the pathways of my body.  This is very appealing to me.   According to the theories of Chinese medicine, disease results from the imbalance of energy flow so I am ready to take on those little needles and balance my Chi.  
• Finally, remove the assholes.  I deal with insensitive people all the time at the office and am now armed with the book, “The No Asshole Rule” so I will figure out how to survive the damage caused by these jerks.  In turn, my stress levels will decrease and I will be happier.