Tag Archives: Chronic Illness

MS News: April 2017

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Highlight!

  1. Canadian Study of MS-Prone Family Proves that in Rare Cases, Multiple Sclerosis is Inherited
  2. Large Family Study Strengthens Case for Inherited Multiple Sclerosis
  3. New Survey Finds Multiple Sclerosis Patients Struggle with Misdiagnosis and Invisible Symptoms

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MS News: March 2017

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Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017

  1. Society Releases Statement on American Health Care Act
  2. National MS Society Urges Lawmakers to Oppose American Health Care Act
  3. Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part D: Addressing
  4. Researchers find patients’ annual financial burden under Medicare Part D is ‘too much too soon’

 

New book by the honourable American/Irish author and friend Trevis Gleason!

  1. Chef Interrupted: Discovering Life’s Second Course in Ireland with Multiple Sclerosis

Highlight!

  1. Blood Diagnostic Test for Multiple Sclerosis to be Released in May 2017

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0% responsibility – 100% accountability

1ebc241f7cb451636a9ff3ccedcf4945Imagine this… Some time ago you were finally able to give answers to these two questions, “Who am I, and what is my purpose in life?” While admitting the questions were rather philosophical as well as personal, you are suddenly thrown back to square one, and you once again want to find out who and what.

Ouch.

Like most people, my answers came and went as every meaningful tide in life left a new imprint on my senses. Continue reading

Single and chronically ill on Valentine’s Day?

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So, you’re single.

And chronically ill.

On Valentine’s Day.

But, what the heck, you don’t care.

You don’t care because you’re an alpha-woman even when you sometimes feel like a z-woman… zonked out on meds on the couch.

You don’t care because, seriously, you don’t have to go shopping to find sexy lingerie that’ll only cut off your air supply while wearing it.

You don’t care because you know that the only thing you can find in a chocolate box is a raised BMI.

You don’t care because you don’t thrive on baggage left behind by old flames. Continue reading

200 days

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200 days.

Being a perfectionist, of course, it had to be precisely 200 days.

Six months and nineteen days between my first multiple sclerosis symptoms and its very diagnosis.

Little did I know that it would eventually transform my life.

It was September 2004, and I had just dropped off my mother at Dublin Airport for her return to Belgium. On the way home, a strange sensation took hold of the left side of my face, as if it had been injected with thick rubber. Thinking nothing of it, I went back to bed to catch up on lost ZZZs.

I slept for hours.

And hours. Continue reading

Being real!

beingrealImagine, you’re stuck with me in an utterly crazy, hilarious episode of The Big Bang Theory. Let your imagination run riot, especially since this post has some gender reversal role playing added to it.

There is the ditzy Penny-type of person who thinks along the lines of “Not seeing = questioning = perhaps, possibly, maybe believing”. She thinks it’s hard to value the worth of something when it’s not visible, but given time to learn, she might just try and see things your way.

And then there is Leonard, who knows that he’s not on the same score card as some of his contemporaries. He knows that there is truth in the world, and more importantly, inside him. He says, “Stop questioning me. It exists, I have tangible proof, and I will demonstrate it to you until you let go.”

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Conversations with myself

14222347_1101763419917442_6482430576462991914_nNot that long ago I was caught talking to my MS medication – all 28 tablets a day – in the hope they’d finally get their act together and start doing what they’re supposed to. Work. Things. Out.

I believe the phrase was, “If you are my Ross, I will be your Rachel.”

Sure, I’ve thought crazier things than that. If people would know what I’m thinking half the time, they’d take me straight to emergency and say I tore all the ligaments in my head.

Two of the biggest life lessons MS taught me, is that you can just as well have fun, and what you think, you become. A bit of semantics here and there. A touch of rhetoric too. And a tiny bit of Ubuntu if you like. Rather like, “I’m medically fascinating.”

I’m chronically fabulous too.

(Or so I am told)

I step on my own toes and hurt my own ego for the sake of applying a bit of black humour to the conversation to stop the person in front of me worrying about my physical state. So, I’ll be damned before I start taking myself too seriously. Stepping outside the box doesn’t work because I was never in the box, to begin with, and I never will be. Continue reading

I want…

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

Ignorance

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I could call this a ‘letter to society’s ignorance’.

I could just as well call it a ‘letter to my stupidity’.

While I will ponder about a suitable title for this piece a bit longer, the topic is so well-known and dreaded, it is part of the dark fabric of life.

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But you don’t look sick!

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and duplication of this material without express and written permission from this blog’s author and owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

Let’s be frank

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“Life is 10% what happens to you and 90% how you react to it.”
(Charles Swindoll)

If you’re running behind on making a few new year’s resolutions, or perhaps call them ‘new year’s illusions’ by now instead, all is not lost. There are small things you can work on every day of the year.

Given its absurd sense of unpredictability, life with MS is challenging at the best of times. Anything turbulent added to it, and it soon becomes a slalom course with so many twists and turns that each one seems icier than the ones before. Continue reading

Responsibility hurts

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Responsibility.

Fabulous for those who own it, bad for those who don’t.

I am one of those people who quickly feels guilty about having to cancel hospital or advocacy appointments when I’m too unwell to leave the house. It might be innate, or it might just be one of those famous Irish guilt-trip things that are attached to my dwindling Belgian roots. Either way, I often “suffer” from feeling “over-responsible” when I fail to do something.

After watching Dole Life, a program on Irish television about the difficulties young adults face trying to find and keep a job, the topic of responsibility and maturity was on everybody’s lips the following days and weeks. Shauna (Jake) had just started a new job, yet in the first week of her employment, she arrived late for four consecutive days. She said coming out as transgender was the reason for being late, but her reasoning didn’t help her cause, and it might, in fact, have turned more people against her than she intended to. Continue reading

Older, and dafter too!

25596wallfAnother year older today, and another year dafter too.

Kookier.

Most definitely away with the faeries.

Never one to take myself too seriously unless needed, I am taking my new number in my stride. Having family and friends I love and who in return, seem to like me enough to give me a place in their own busy lives, is all I need to know.

Asked how I ended up in Dublin, celebrating my birthday in Ireland for a 13th consecutive year, is a recurring question. The answer? The bonkers idea since age 15ish, that life in Ireland was ‘it’, a dream so titanic in size I was afraid it might never work out. Continue reading

Multiple Sclerosis: The First F____ed Fortnight

A very beautifully written post by my friend Emma, who goes over her first few hours and days after her MS diagnosis.

“There’s no doubt, it has been raw, it has been ugly with cursing and swearing, lost relationships dodgy decisions. But I everyday I make peace with myself, I give thanks that I have another moment to live. Because there were times when I didn’t see any hope. I was soaked in blood, sweat and the tears of a thousand years.” (Republic of Emma)

Continue reading below…

Republic of Emma

The early days are the most ‘challenging’ as in it is like a dirty dangerous whirlwind where emotions, words and all sense of self goes whizzing around. The day I walked into Mullingar Accident and Emergency room, I was wearing my jeans and a t-shirt that had seen better days. Two weeks later, not only was that t-shirt gone, the Emma who walked into A&E had disappeared, stepped into a bizarre place of chronic illness and dis-ease.

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Multiple sclerosis- multiple scars? I had brain damage? Those fifteen seconds, when those words went from the consultant’s mouth to my ears, a little part of me died… I picked up the pieces of my broken heart but I still think of old Emma sitting on the edge of the hospital bed and the new Emma, getting up and stumbling, in a post-traumatic shock way, into a new life, a new way of…

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Blurred notes to self

10446626_493205107477168_3492364098128049118_nSunday evening, as always a short look forward to the coming week, and a long goodbye to the past three weeks. There’s the usual MS fatigue and some added black-and-white-being-fed-up always having to repeat myself. In other words, today has been, and still is, all about ‘out with the old, in with the new’ but not before letting off some steam.

In a recent post for the blog of the Irish MS society, I used one of my favourite quotes by Lewis Carroll, “I can’t go back to yesterday because I was a different person then.”

I wrote about being a different person pre- and post-diagnosis. Being diagnosed was a super-charged emotional rollercoaster ride, the ride hurdled forward by the passing away of six family members (including my only sibling, Nana and stepdad) the following 3.5 years and by turning single again. Let’s just say that before being able to get up and crawl on my hands and knees, I was knocked sideways again, six times over. Continue reading

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