My Friend Has Multiple Sclerosis

Doctor Picture

I got a text  from a friend the other day.  It said that he was sorry for contacting me out of the blue with a bomb like this but – his wife had an MRI last week and they just left the neurologist’s office where they learned she has MS.  I could hear the anxiety and fear in his message.  And I remembered those first days of utter confusion and fear and time spent on the internet gaining new fear and having more questions than there were answers and, and, and, . . . .

My heart broke for them – as it does everytime someone has to hear those words: “you’ve got Multiple Sclerosis.”  I wondered how I could best support these people.  What’s the best way to help ease someone into uncertainty and answerless questions?

Start At The Beginning

I chose to start by telling my friend to take a deep breath.  “It’s going to be okay,” I said.  “It may not feel like it right now, but I promise, this is not the life changer that you think it is right now.”  I tried to reassure him that there’s much that can be done to help mitigate the disease’s symptoms and progression.  I shared bits and pieces of my story – and of many of my fellow FUMS’ers – to illustrate the point:  we have MS, MS doesn’t have us.

I shared my initial symptoms, and how they’ve come and gone over the last 6 years.  I explained that I’ve found coping mechanisms – and had to have my friends and family help me along the way.  For instance, my kids have learned to let mom rest when I need it – and they’ve learned how to clean up after themselves and make themselves a sandwich.  This MS stuff has paid off in certain ways!!!

To Drug or Not to Drug – That Is The Question

The doctor gave my friends the options of medications and 2 weeks to decide what they would do.  It was obvious my friend was hesitant and felt over his head in this decision.  Additionally, he mentioned the 2 week timeframe several times, leading me to believe he was feeling a time pressure in making a HUGE decision.

I explained that most people don’t actually get a diagnosis as quickly as they had (she started with symptoms 2 months ago, saw a doc and got an MRI a week ago and now has a diagnosis!!), and as such, they didn’t HAVE TO make a decision in 2 weeks.  People go undiagnosed for years, and consequently, go without medication for years.  Additionally, I have the distinct experience of having MS both while on medication and now, for the last year and 1/2, while off the medication.  I’ll never counsel anyone to do what I’ve done – especially since this disease is so fickle both between different people and within the same person – but I certainly can share my experiences both off and on the medication.

What Does the Future Hold?

Ahh – the ultimate (unanswerable) question.  As with all diseases – especially this one – the future is unknowable.  And while that can be very daunting and overwhelming if viewed in the negative – it can be a GREAT thing if viewed in the positive.  This woman was diagnosed with RRMS.  This flare may be her one and only.  Or – if she has more – they may be very small and manageable.  Better yet – with all the incredible research that is going on right now – as we speak (or read!!) – the CURE could be found.  Wow – given that kind of pep talk – the future’s so bright, I have to wear shades!

Bottom Line

The bottom line really is that while we don’t know what will happen in each of us – every member of the human race can say the same thing.  We all share the same bad prognosis!  So I’ll counsel my friend to do the research and choose what she feels is the best answer FOR HER.  And then I’ll tell her to breath.  Deep breaths.  Deep, relaxing breaths.  Because, while none of us knows what’s in store for the future – none of us knows what’s in store for the future!!!  :)  Oh – and I’ll be sure to tell her to talk to the MonSter as it deserves:  I’ll tell her to say “FUMS” everyday!

**Have friends and strangers come to you for advice about MS?  How do you handle it?  What do you say?  Is there a resource you send them to or do you just talk them through it?  Please leave a comment in the comment section below this post.  I’d love to hear your thoughts.  Thanks.

 

Sometimes it helps the stress, just to say F-U-M-S!!

Special thanks to our friends at www.FreeDigitalPhotos.net for allowing us to use this cool photo of a doc reading some xrays!!

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Birthdays and MS

It’s a big day for me:  today, I’m 50.  There I said it.  I feel like I’m at a birthdays anonymous meeting:  “Hello.  My name is Kathy and I’m 50.”  I’m reposting a blog post from a couple of years ago because I read it and it still applies.  Oh and one more thing, thank you all for your support and kindness for these last couple of years together.  My greatest gift, today and everyday, is my family and friends – amongst which, I count you.

 

 

Happy Birthday candles on a cupcake - to "celebrate" my Multiple Sclerosis

 

Today is my birthday.  I’ve received an unbelievable amount of birthday wishes on my FUMS Facebook and Twitter pages.  It absolutely blows my mind that people all over the world know about little old me and my story and actually take time out of their day to wish me a happy birthday.  That wouldn’t be true without MS.  While Multiple Sclerosis (MS) has brought with it so many difficulties, worries, pains and heartaches, it has also brought new joys, wonders and friends that I would never have gained without it.  I remember hearing people with diseases interviewed who would say that they were thankful for their disease.  “What the hell is wrong with them?” I’d think.  Who would wish for a disease?  Especially one that is incurable, progressive and debilitating?  No one – that’s who.  But those of us with one, and who so choose, have found the little gifts that can actually come from something life-changing like a diagnosis.  I sure as hell wouldn’t go back and choose to have MS again.  However, since I do have it, I’m grateful for what good has come of it.  Things like old friends who have found their way back to me because they heard I wasn’t well.  Or new friends, gained through a little website with a potentially obscene URL.  Whodathunk I’d have friends in Scotland, Estonia, Africa, Ireland, England, Canada, Katmandu?  Not me.

I’m grateful for some of the ways that MS has changed me, too.  I’m much more compassionate and understanding than I used to be pre-dx.  I take great joy in “the little things” like having the hummingbirds come to my feeder, my perennial flowers that came back this year, watching my kids sleep, spending a day just chatting with a friend, having a day without pain.    It’s a shame it took a jolt like MS to make me really live and feel, but it did, and for that, I’m grateful.  I’m also more aware of my ability and responsibility to maintain and fine tune my own healthcare.  Paying attention to nutrition, exercise, rest, and relaxation was not something on my radar before MS.  I’m empowered by my own ability to “tweak” how I feel by laying down in the middle of the day or by eating more protein when I need more energy, etc.  When first diagnosed, I felt very “done to” and out-of-control.  Like MS would just march over me and there was nothing I could do to challenge it.  On a cellular level that may be true, but I’ve found on a spiritual level, I can choose to be in control and I can decide to be happy despite the MS.  The things within my control are many, and I’ve learned how to exercise that control.  And those things outside of my control – and we all have them, not just MS’ers – they are just that – out of my control.  I’ve learned how not to worry because worry is a wasted emotion, a waste of time, a waste of energy.  It’s freeing, really.  And a gift – everyday, and especially this day – my birthday.

What I really wanted to say in this post is “thank you.”  Thank you to MS for the positive things that it’s brought into my life through a shift in perspective and awareness, and “thank you” to you all who have ushered me through much of my uncertainty and fear, 
 and provided support for me – and a community of us all – through your comments, “likes,” “shares,” and unwavering optimism.  What a great  gift – on my birthday, and everyday.  Thank you.

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Quit “Shoulding” All Over Yourself

 A sign saying "Don't Should On Yourself" to signify giving yourself a break if you have Multiple Sclerosis

“I’m so tired, but I should really clean up those dishes.”  “I don’t want to talk to them, but I really should.”   “I should really be resting, but if I don’t finish this laundry, it’ll never get done.”

I felt the familiar fatigue creeping up my legs and into my back.  The spasticity in my neck and shoulders was making itself known.  The shooting pains in my arm were undeniable.  I had should all over myself – and my MS was fighting back.

It’s just dumb to should yourself into a flare – but I do it – and have done it – repeatedly.  And I think a lot of others should themselves up one side and down another too.  Are you one of them??

I’ve recently (once again) over-volunteered.  And this, after I said I wouldn’t do that again.  It’s not good for my health.  And yet, here I am again.  The left side of my face is a twitch MonSter and the pain and fatigue are knock, knock, knocking on my door.  The cog fog became VERY noticeable to my family a few nights ago.  Apparently I get quite the look of confusion, and resemble a returning Zombie – and then say stupid things like “are the kids still in school or is it summer?”

What do I mean by “should all over oneself”?  Well – saying things like “I should clean my house today” or “I should organize the kids homeroom party” – especially when you don’t feel up to it.  There are things in this world that we MUST do.  For instance,  we MUST eat and we MUST go to the bathroom.  Try replacing “should” with “must or I may die”.  Let’s try it, shall we?  “I must (or I may die) clean my house” or “I must (or I may die) organize the kids homeroom party.”  Sound ridiculous?  That’s because it is.

Are you guilty of shoulding on yourself?  Ok – consider this the FUMS confessional and unburden yourselves in the comment section.  Let’s hear your stories.  And then, stop shoulding all over yourself!  It’s messy, it stinks and it’s toxic.

Should with a line through

“Sometimes it helps the stress, just to say F-U-M-S”

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Fun(d)raising, Awareness and Help – Oh My!

It’s that time of year again – FUN(d)RAISING TIME!!!.  There are a TON of walks, runs, golf tournaments, bike events, auctions – both silent and loud, etc., going on right now.  It’s all so important and if you’re involved with one in any way – including donating – please let me thank you on behalf […]

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Continuing To Honor A Dying Wish

Continuing To Honor A Dying Wish

**REPUBLISHED IN HONOR OF THE ANNIVERSARY OF MY MOTHER’S PASSING.   My brother called early that Monday morning.  No good news ever follows a really early or a really late ringing phone.  He told me that mom wasn’t doing well, that he had called a priest to have last rites administered.  My 85-year-old mother was […]

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Live – From The Orange Carpet . . .

Sharon Osbourne, Kathy Reagan Young, Nancy Davis and Jack Osbourne

  Did you know that medical funding is extremely competitive – for grant money and straight donation?  That means that a scientist in Budapest might have a piece of the puzzle that would fit perfectly with a scientist’s piece of puzzle in Switzerland, but they’re guarding their pieces instead of sharing for fear of losing […]

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