guest posts / health advocacy

guest post! | “but you don’t look sick!” – living with multiple sclerosis

• by Awesome Guest Blogger

This week is Invisible Illness Awareness Week!  I’ve been blessed by many of my amazing friends who want to share their stories to help us all gain a bigger perspective on what it really means to live with a variety of invisible illnesses.

My friend Meggs has Multiple Sclerosis, and does her best to keep active and take an active role in managing her disease.  She also lives as a person with MS and without insurance.  She shares her story of some of her experiences navigating the world of invisible illness in the last year.

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meggs headshot

Since I was diagnosed with Multiple Sclerosis in early 2011, I’ve come across more than a few people who are (unintentionally) ignorant of what it’s like to live with a disease that has symptoms nobody else can see. I think one way to let you in on what it’s like to have this “invisible” disease is to share some of the most frustrating things people have said to me since I was diagnosed and the things I wanted to say in response but didn’t:

  • What they said: “You don’t look sick. Are you sure you have MS?” What I wanted to say but didn’t: “I can’t see your brain. Are you sure you have one? Yes, I’m sick. Yes I have MS. I’m sorry if my face isn’t falling off as an outside indicator that there’s something wrong with me. I shouldn’t have to look sick for you to understand that I have lesions on my brain. Ugh!” I may not look sick, but I feel like a big ol’ pile of poo sometimes. MS is a disease that has so many symptoms it’d take me an entire day to explain to someone how it affects my day-to-day life and why they can’t see my symptoms. I walk around about 30-40% of the time with a super annoying and sometimes painful tingling sensation in the entire – yes ENTIRE – left side of my body. Not to mention the shooting pains, vision issues, dizziness, and muscle fatigue.

  • What they said: “I know [so and so] has MS, and she balances a career and a family and an active social life quite well. When are you going to go back to work and why don’t you go out with your friends more often like [so and so]?” What I wanted to say but didn’t: “[So and so] has medical coverage and a treatment strategy that she has worked out with her neurologist. [So and so] has the benefit of accessible health care and medication at her disposal. Were I able to afford the fees to procure a neurologist in order to gain access to meds and treatment plans that would allow me to go back to work I would be working instead of spending countless hours trying to find resources to get back on my feet. As of this moment without meds to manage my symptoms I’m kinda out of luck. And I don’t go out with my friends more often because I’m tired. Fatigue is a vampire. And not the sexy ‘True Blood’ kind. The ugly ‘Nosferatu’ kind. Furthermore, I am NOT [so and so]. Thank you; please drive through.”

  • What they said: “Oh my GOD! That’s horrible! Are you gonna die from it?” What I wanted to say but didn’t: “Oh my GOD! I know! I sure hope not!” If I had a nickel for every friend or acquaintance that has told me some horror story about a person dying or having their livelihood stolen from them because of MS… well, I’d probably have a dollar or so. The fact is I don’t know which type of MS I have or what my general prognosis is because I don’t have access to health care that will help me figure that out. I found out about my disease thanks to the compassion and ingenuity of a few really awesome people who work with homeless and indigent programs in my community. I would prefer not to be bombarded with sympathy and remarks like this because all they do is make me want to punch people walls.

All in all I try to have a sense of humor about things and laugh it off when I’m able. I guess it’s one way of coping with the fear and the anger I’ve felt since I was diagnosed. The truth is most of my friends and family will never understand how it feels to live with Multiple Sclerosis… and I’m thankful for that. Hopefully one of these days I’ll be able to find some affordable health care and a treatment plan that’ll work for me. Until that day comes, I have hope and a positive attitude and a great online community to reach out to when I need advice about how to deal with the things I’ve got to face in the days ahead. Thankfully, I also have a mental filter that keeps my mouth shut when other people who don’t even really know what MS is find it necessary to step in and fix me with their advice and their lectures about how I should be handling the disease. Otherwise I might have not only Multiple Sclerosis, but also the need to stretch a thick piece of silver duct tape across my lips everywhere I went. Now that would be something to explain!

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Megan is also a survivor of childhood sexual abuse and sexual assault as an adult. She has been diagnosed with Post Traumatic Stress Disorder, Generalized Anxiety Disorder, Mild Obsessive Compulsive Disorder, and depression. She blogs about her healing journey at I Tell My Truth.

Thanks for sharing your story, Meggs!

12 of 12

12 of 12 – september ’11!

• by kerri

On the 12th of each month, a bunch of bloggers from around the world take 12 pictures throughout the day.  Here are my pictures for September 12th, 2011!

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8:46 am – kitchen. Ready for school.  Even though I still had a while to hang around home.

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8:57 am – kitchen. Mike and Bethany making appearances in my 12 again!  Because I always feel the need to remind everybody about 12 of 12 because I love it so much ;).  [Sorry guys, Bethany and I didn’t meet up again this month! :)]

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9:05 am – kitchen. Wisconsin cheese for breakfast?  Well, okay.

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9:39 am – bus stop. Was running late which caused various things to occur.  Forgot my other three inhalers [ack] AND had to dig around in my backpack for this one after my massive walking-sprint to the bus stop.  I’m just happy it was in my backpack!  Also I made it to the bus stop in 7 minutes, which is ridiculous.

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11:30 am – athletic centre nap area. Outta class and met up with Dean [yes, the same one as in the cardboard cutout head a couple weeks back].  Read some of my textbook for Exploring the Bible.  Sort of.  Also drank a Yoo-Hoo from America.

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11:38 am – bookstore. Dean and I headed over to the bookstore, which STILL does not contain the Bible I need for Bible OR my Physical Activity Promotion and Adherence textbook.  Grr!

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1:17 pm – athletic centre nap area. Met up with Sam and snapped this on my way to class.  The guy came to refill the chip machine in the nap area, and he apparently tried to give these to Sam but then just left them.  [Coincidentally, my Physical Activity Promotion and Adherence prof came in throwing bags of chips about the class, I wonder if he and the vending machine dude are buddies?]

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5:50 – kitchen. What should I put my Cloudflare sticker on?

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7:25 pm – starbucks. Pumpkin Spice frappuccino and a Birthday Cake pop.  Happy birthday Steve and Briley!

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7:42 pm – Arby’s. Gross fries, good times.  Tara’s sisters changed her Facebook password and she made the mistake of exclaiming the new password loudly while Kelly and I had our phones at hand.  We spent a long while updating her Facebook status to various things.  None of which were incriminating, because I suck at that kind of thing.

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9:04 pm – Starbucks. Because Tara was scared that her sisters were going to blackmail her and put embarrassing Tumblr videos on her Facebook [Tumblr is her secret world, as she exclaimed in Arby’s], she had to go get them Starbucks for bribery purposes.

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9:06 pm – Starbucks. Oh pumpkin spice, you make me happy.  I love fall.

 

12 of 12 was created by Chad Darnell.  Check out his blog to see a list of all September 12 of 12s.  Thanks for allowing us to infiltrate your blog space for another year, Chad, and for dreaming up this project.  The 12th has become one of my favourite days of the month!

life

ten years, never forget

• by kerri

even now, the world is bleeding / but feeling just fine, all numb in our castle / where we’re always free to choose / never free enough to find / i wish something would break / cause we’re running out of time.

and i am overcome / i am overcome / holy water in my lungs / i am overcome

This is the first song I listened to this morning, alone, in silent reflection, silent contemplation, silent prayer.

Ten years, ten long years, and still without words.

And it doesn’t matter where I was . . . because I had an insignificant part in this day ten years ago.

Heroes were brought to light.  Firefighters and emergency personnel, air traffic controllers . . . the passengers and crew onboard the flights, those working in the World Trade Centre and their families.  Heroes who never had expected to become heroes as they went about their lives.

Ten years of tears from families and friends of those who died as a result of the 9/11 terrorist attacks.  Ten years of war.  Ten years of change, of uncertainty.

Ten years of trying to rebuild lives that were shaken, turned completely around . . . a country that was changed forever as a result.

Ten years of time attempting to restore hope.

i am overcome, Lord.

–overcome, live

asthma

protected by medicalert

• by kerri

I talk a lot.  It’s one of my better qualities for working at a daycare.  But with everything I do–having an active job, running around at work and in class, going to school where very few people know me, working out, and everything else that comes with just living your life, not everybody knows your life story.  And i’ve taken CPR enough times and know enough EMTs to know that in an emergency, knowing your story can make a huge difference.

Especially when you can’t talk.

For that reason, I’ve worn a medical ID bracelet of sorts since my asthma moved beyond two inhalers.  Simply, it stated my name, asthma, organ donor and an emergency contact phone number.  Which in reality is all that is necessary in an emergency anyway.  I haven’t ever gotten to that point yet, and I very much hope and pray I never do.  But asthma is a strange disease, and you just never know.

Here’s where the dumb part came in.  All too frequently when I’m out, nobody is at the contact phone number on my bracelet.  And if they were, I have doubts either of my parents would be able to share the names of the medications I’m on–I don’t blame them at all.  Some days I forget.  And sometimes, they’re away from home for a week or two at a time, rendering contacting anybody useless until I’m able to tell people what’s up.  No bueno if I happen to get sick.  So after pondering this realization for two out of four weeks in July as I ran amok at work with my parents out at Lake No Man’s Land with barely any phone service, I realized the too-frequent semi-uselessness of my ID bracelet.

In August, I made the move to MedicAlert.  My bracelets give the hotline phone number, my member number and read ASTHMA, ORGAN DONOR.  My file advises medical personnel of my medications and my retinopathy.  If anything happens, MedicAlert will notify my family, and I can update the contact numbers on my file as-necessary.  Whether I’m around home, or around the world, regardless of whether where I am speaks English or not, MedicAlert covers the details in translation, I’m protected.  Probably over-protected.  It’s like why people buy insurance, they hope to never, ever need it, but they have it just in case.

I got my first plain ol’ “designer” stainless steel bracelet a couple weeks ago, right before I went to Chicago — perfect timing.

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Yesterday, my sport bands [or sportybands as Natasha and I have been calling them!] came.  The other is just plain black.

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So, maybe I’m over protected, but at least whatever and whereer life takes me . . . I’m ready.

faith

six years.

• by kerri

Always, always when I think of this, on this day, a wave of disbelief and dizziness in reliving those moments of desperation passes over me.  The day comes and goes, year after year, where I was so close to losing it all, and then in an instant, got it all back.  And I still don’t know what to say about it, what to do about it.  In a moment where everything was crumbling in front of my eyes, the darkness that surrounded everything around me and everything in me became light.

Six years later, I am still without words for the redemptive love of my amazing Saviour who saved my life.  Protected me from myself and saved my life when I was so, so close to throwing everything away.  Throwing my life away.

I have no other words.  I am still alive.

And thank You will never be enough. But those two words, HOPE for tomorrow, and a heart of love for my God is all I have.  Hope that only begun in me six years ago today, and love that I try to let shine through in my life.

I don’t deserve this.  I don’t deserve to be transformed, to be changed.  I don’t deserve the amazing people around me, my amazing jobs, the amazing kids I work with, my amazing church.  I don’t deserve all of the things I’ve been blessed with.  I don’t deserve the love of my God after all the times I pushed Him away and smacked Him in the face.

Yet He loves me despite it all.  He loves me enough that He opened my heart that September day in 2005 by telling me that I didn’t have to end my story then and there.  That He alone could get me through everything I was facing–lighten my darkness, take the depression, and heal my grandma of the cancer that invaded her for a few more years.

I’m living a life that six years ago I’d have never dreamed.  I’ve had amazing ups, and I’ve had huge downs.  I’ve learned, I’ve grown, I’ve danced, I’ve cried.  I’ve reached my arms to the sky in worship and fallen to my knees in desperation.

I’ve created new chapters of the same story that God is writing.

I am ALIVE.