’nuff said…!

check this out…really good video for those of you who might not be so familiar with MS or newly diagnosed!

I have received the “you look so good!?” question.  note>>>not a comment – ha!  good answers found above!




chance of clouds? again?

geeesh. I have been so frickin’ moody since MS showed up. I blame it on the lesions close to my amygdala. oh. and the fact that everything in my life is changing. some things for the better. actually. many things for the better. 🙂

up and down. down and up. up and up. repeat. complete with a weekly crescendo – either up or down. arrival day undetermined.

must be leftover from a swing accident as a seven year old. I was swinging as as high as possible in our beautiful English garden. but cut short rapidly after leaning my head back, far back just as the downswing started…and ended up planting my forehead in the grass. while the swing did what it does…keeping me moving with my forehead bumping along the grass.

ouch! what a shock.

still shocks me every time I swing downhill these days. it always has. this is not new to me. so I’m not sure why it still surprises me!

my therapist says this behavior is completely normal. she would be more concerned if I wasn’t processing my emotions. huh. dis-allowing the yuck to bubble to the surface. she is proud of me for my hard work! wow. my ego loves compliments like that. 😉

so what does the down side look like…?

blast. I can see my black cloud in the distance. carefully watching it out of the corner of my eye. assessing why it’s there. good grief, what now? frustration as I watch it slowly start to descend. picking up speed as it nears me. so I pull out my gloves, ready for the pounce. the war wages against the black cloud. I try my hardest to fight it. and elegantly forget all my life coaching tools. all the tidbits I have picked up in life. things that have helped me keep moving forward. eventually, I start to remember what to do. I verbalize my emotions. or slap them on the page. get outside. and, once I stop fighting my emotions it gets mildly worse (tears – good grief!). and then…always a happy surprise…better. the cloud clears. and life is good. I feel normal. and alive. I’m back.

brilliant quote from one of my artist’s way friends…

we live up to the labels we give ourselves! good and bad. I love this quote. I had been living up to the label the last few weeks, I’m depressed. (depression>;>;>;MS symptom.) as opposed to, I still have some sadness to work through when it comes to MS. that thought feels much, much better!

thank you, God, for helping me through the clouds.


ps. st. John’s wort helps!

miscellany…a birthday, a fall, a speck, and the power of the i…

great birthday celebration with my hub last week!  a day late though.  post cast removal.  (he was not feeling up to celebrating his b-day with an encapsulated leg.)

he is loving life again now that the cast is gone!  yay!  and is looking quite the gentleman with his new cane.  and a removable black boot.  which will remain on for four weeks – and then he’ll start PT.

so last night, we had a small St. Patty’s day shin-dig at our place.  fun!

first time in a long time since we have entertained, which we used to do all the time.  then last year happened.  and is still happening.  yesterday…tried to avoid my normal level of stressing before our peeps arrived.  I succeeded.  yehaaw!

but, MS seems to nosing his face in my business.  again.  still.  with a few new things.  annoying!  frustrating.

a.  all my joints were aching yesterday.  today – same.

b. then, this is where it got interesting.  when the hub and I started playing a practice round of Phase-10 (card game – love it!) before our peeps arrived, I was hit with a strong wave of vertigo.  actually the most scary one I have experienced.  this one felt like someone had knocked my chair backwards, and I was falling, falling.  think Alfred Hitchcock cinematography.  and fast.  my eyes went blurry as I was falling.  my head tilted back.  I grabbed onto the table to stop the fall.  but I wasn’t falling.  my brain was.  yikes.  it lasted about five seconds.  and then cleared up.  hub was immediately concerned.  this is going on the symptom list to review with my neuro.  normally I experience vertigo when I’m walking down long corridors.  this was way new.

and finally, c.  which is really not that interesting at all.  I have a new floater in my left eye.  yesterday, I kept seeing something in my left peripheral vision.  and sure enough…I saw the black speck this morning.  no biggie.  just distracting more than anything.

oh, and let’s not forget d.  my ring finger and pinkie on my left hard are super stiff and not that easy to control.

on the knowledge front…

the shoulder pain and left arm pain…down to my fingers…has intensified since MS joined the party.  I have had the shoulder pain since 2006, but turns out – now it has likely turned into spasticity (constant muscle contraction) that has crept down my arm to my fingers.  not sure if there’s anything I’ll be able to do about that.  other than open shoulder yoga poses.  will monitor and speak to the neuro.  my therapist believes that MS likes to attack areas that are already sensitive.  huh.

finally, on the optimistic front… 🙂

and on a totally different topic!  I’m reading the most interesting book at the moment!  Quiet:  The Power of Introverts in a World That Can’t Stop Talking, by Susan Cain.

(yes, I still owe you peeps a report on the Happiness Advantage…just distracted by Quiet right now!)

this book is fascinating!  I have always known I was am an introvert.

labeled as shy while a child.  like there was something wrong with me.  still labeled that as an adult.  ha!  like many other quiet, contemplative kiddos.  and adults.

the author discusses how being quiet became a personality flaw in the 1920s.  that was 50% of the population they were talking about!

sidebar>>there is a difference between being shy and being an introvert!  you can still be shy and also an extravert!

this ideology coincided with the industrial revolution.  instead of focusing on good character traits – honesty, integrity, being kind to others…we now need to raise our kids to sell, sell, sell, talk, talk!  thanks to Mr. Dale Carnegie!  so that 50% of the population began to be grossly overlooked.  and still is.  oddly enough, that was shortly before personality meds began to hit the market to eliminate the quietness.  because there was something wrong with those quiet types!  crazy!

this book takes back the power of the introvert.  explaining why introverts are critical to business and the arts.  how an introverted leader can often get more out of their staff than an extraverted leader – because we are quietly encouraging and often gentle.  thoughtful.  always thinking and observing what’s happening around us.  proactive.

why us introverts like to connect to God on a personal level.  without all the pageantry, community, and interaction during a weekly church service.

we take our time before speaking.  we are often writers.  also, we don’t like a lot of stimulation.  we work well independently.  our voices are softer than extroverts – hence, why we get overlooked.  no one hears us!  ha!

loving it!  it all makes so much more sense.  and why I do not have a problem writing about my MS journey.  as opposed to talking about it.  so there you go.  here’s a youtube clip from the author speaking to Google management.  lots of Is in this group!

are you and I or an E?  would love to hear your thoughts on the topic!

note>>if you’re not sure – easy way to tell:  after attending a party, are you exhausted (I) or energized (E)?  you can also take an easy personality type indicator test here…I am an INFJ – heavy on the N and F.  low on the J.  sometimes a very low E – like 1%!  but most often an I, which is okay by me.  😉

Jung personality type test



ok, I have changed my mind. sort of. this is a good thing.

I can do that. I’m female. and enduring a chronic health condition. ha!

soooo…this afternoon I finished Awkward B*tch: My Life with MS, by Marlo Donato Parmelee.

loved, loved it.

had started it a few weeks ago, and put it down. too close to home. I have had enough of this MS biz…was the mindset then.

so I started it over yesterday.

and could not put it down. probably could have finished it last night. if I didn’t have to sleep.

it was like I was reading my own memoir. despite the moving abroad. minor detail. I already did the move to London. ha!

everything Marlo experienced…has happened to me.

and in the same order. crazy.

crazy. this is the closest I have come to someone having a similar MS story to mine.

she even had sixth cranial nerve palsy. that’s what I had! her first major symptom. go figure. instead of Picasso, she looked to Dali for her visual inspiration reference. I get it.

I kept bursting out with lines from the book to my poor hub last night, and then again this afternoon…who, btw, is still recuperating and taking it easy (cast off on Wednesday)…so I’m sure he appreciated the outbursts! I had to keep reminding myself, that I was the one reading the book – not him!

I laughed. and cried. and laughed again. my husband and I went/are going through what Marlo and her husband endured. I love how confident this woman is! she is so open and authentic. I loved the line when she quoted her husband asking telling her to STOP DOING THAT (paraphrase) – after she discovered the L’hermittes sign and kept testing it over and over again. I could not stop putting my head down either. I drove my husband and sister nuts-o when I discovered the sign in September. ha! she also got lost in all the internet research. doctors visits. panic of a brain tumour. extreme fatigue. wrong words. no words. vertigo. pins and needles (buzzing)…and the list goes on! love it. not to mention, she is a strong supporter of the MS Society. yeah!

ok, just had to share. it’s a quick read. and a good one. you know, if you ever experience weird neurological events. or not. it reads like classic chick-lit.

loved, loved it!


PS>;>;this week is National MS week!


isn’t it strange when one starts seeing connections all over the place…?

this week, everyone I have talked with is discussing the same topic. crazy. that has been happening week after week, and on a variety of topics.

so this week circled around three conversations with friends and the new support group on the five stages of grief. and I didn’t bring up the topic! ha!

I never studied grief in such detail back in college for my psych-o degree!

it did not occur to me until Tuesday night, that I have been cycling and jumping all over the five stages of grief during the last seven months.

hovering over acceptance at this time. or at least that’s what I keep telling myself – ha! I can already see full acceptance on the horizon. it’s very close. according to my therapist, the first year is the hardest. yep, I would agree with that.

but I have been bouncing back and forth between bargaining. with some crying here and there. usually when faced head-on with the reality of living with MS and how much my life has changed. how much I have changed. I’ll get used to it, that I do know.

though the crying is not as often as it was in the beginning, when it was daily. my poor hub!! ha! no, really…the crying was/is all me.

I am approaching my six month mark. being a day that I will not personally forget…I am making a commitment to myself and to others, to scale back on my MS talk and contain it to the MS compartment of my daily life (though, to be clear…without stuffing it completely…because that doesn’t do any good! though#2, if anyone asks, I will share :-).

I will contain MS for the following reasons…

a. I want to will keep my hub.

b. I want to will keep my friends. and continue to make new ones.

c. I want to be am more interesting than my MS.

sidebar>;>;though this intention will may be hard this month, between doctor’s appointments…and reading our book club book, Awkward B*tch: My Life with MS. written by a woman, my age, same story…I know how it goes…I just don’t want to belabor my story during our book club discussion. instead my intention is that it will be good to talk about this woman’s journey with MS. not mine. I have watched the author’s youtube videos. she is one cool girl. works @ DKNY in London. how rockin’ is that? and wrote a book. even more rockin’! she and her hub moved from the East Coast to London to reinvent themselves. unfortunately, MS decided to also help with the re-invention. but she persevered. her name is marlo donato parmelee if you’re interested in googling her.

since I joined a new support group – all my MS conversation can occur during that time. and with my therapist. and my doctors. grateful that I have a such a great wellness team! but, I will keep you peeps updated when if there are any new developments.

last night, I read through my journal from last year. and discovered when it appears my active lesion flared up – June – even though the sensory and other symptoms didn’t arrive until end of July. my handwriting took a severe turn for the worse. I can’t even read most of what I wrote down last year. but from June on – it’s completely illegible. it’s still that way! now, I type when I journal. much easier for re-reading…! and I have the auto-search function, which is quite handy. along with spell-check – yeah!

I can contain my MS to the page…

every day is an opportunity to uncover something new about myself, my life…my world. our world.


power in clean…and dirty?… pain.

thursday night at church, we discussed if there is power in pain.

I could not stop bobbing my head, yes, yes, yes!  of course!

it was so clear to me that is the case.  look at anyone in the world who has experienced tremendous pain.  and used that pain to change the world.

Ghandi.  Martin Luther King, Jr. Nelson Mandela.  Mother Theresa.

the usual crew.  🙂

oh, I found a new one today (Sunday) to add to the list>>>Kevin Maynard.  google him.  he is amazing.  and definitely one who found the power in the pain.

so…the only area of pain the group was hung up on===>physical pain.

how the heck can that bring any sort of power that is for good use?  some asked.

while the conversation commenced, I started thinking about the varying degrees of pain I have had in my life.  lots of emotional pain.  and ongoing physical back-pain.  and then I thought about MS.  hmmm.

so I started to evaluate where I’m at with that topic as I approach my six-month anniversary post diagnosis.

pain on both fronts.  emotional and physical.

muscular pain.  weakness. and weird sensations that still hang on.  daily fatigue.  brain fog.  problems picking the right word.  the list goes on.  I checked in to see if I had any emotional pain tied to my physical pain on that front.  nope. it is what it is.  I guess.  not so sure yet about the last three items I listed.  ha!  see, I’m not totally fixed.  😉

it’s the emotions that I have worked so hard to address, because I did not want that kind of pain hanging on.   emotions that I was able to stop from becoming yuck-o.  (i.e., I deserved this.)

umm…yeah. this will be a daily exercise until those thoughts are no longer there.

(much better by the way! much better.)

but it is from this pain that I will derive my power.  to give back.  and help others some day with similar experiences to restore self-confidence.


so then my thoughts digressed after I got home, and I started thinking about the two types of pain that we learned about in life coach training…

clean and dirty pain.

physical pain is clean pain – it is just there.  that’s it.  period.  like what my hub is currently experiencing.

here’s where it gets complicated>>this pain is at risk of turning into dirty pain.  if your emotions that surround the physical pain – and grab at you for years to follow.  just like the physical pain that is already there.  (i.e., I was so stupid for getting into the car that day, I am such a failure.)

does that make any sense?

let me simplify this.

clean pain>>>physical and emotional pain that one cannot control.

i.e., an injury or someone close to you passing away.

dirty pain>>>emotions associated with physical and non-physical events in one’s life – emotions that just hang on.  and don’t go away.  in fact, the emotions often grow.  and easily get twisted up with current events.

i.e., a break-up from 20 years ago.  dirty pain if one still talks about it; angry about what is.  clean pain if the break-up just happened a month ago.  or even a year ago.


it’s the emotional pain that always trips us up.  and usually after it turns into the dirty variety.  trust me, I’m familiar with dirty pain!  but have done a lot of work to let things go.  things that don’t matter at all.  and are really irrelevant in my life now.

things hurt in the moment.  and for a variety of reasons.  this is life.  we are all going to suffer at some point.  and over and over again.

because someone or something let us down.

because we let someone else down.

and when we have let ourselves down.

or from something we cannot control.

it’s what one does in that crucial moment (after the clean pain has subsided) and asks the question – do I want to be thinking about this one year, or five years or even ten years from now?

answer, no?  cool.  (yeah!)

remind yourself:  I can be kind to myself as I lean into the clean pain that I’m currently experiencing.  (by lean in, I mean – really feel the emotions fully.)  and make a commitment to myself to work through the emotions.  identify and acknowledge the pain and follow up emotions.  and start to move forward.  take note when something jiggles a familiar nerve.  oh hello, there.  I know you.  and this is  how I worked through it the last time.  this is what worked.  and what didn’t work. I am going to use this as an opportunity to do things a little differently this go around.   

sidebar>>this can still happen if you have been nursing your pain for years.  awareness that you have pain that is hanging on is the first step!  that is a small victory!  well, and also the desire to eliminate it…ha!

that’s the only thing we can do to help our happy, right?  once we’re through the clean pain, let’s start living again!

we only have one go at this round in life.  why not make it the best?

let’s get your happy on people!!

I have been reading the Happiness Advantage by Shawn Achor.  brilliant!

you can expect a full book report.  😉

Iife is full of challenges.  being happy shouldn’t be one of them…author unknown.