10.30.2015

Thanks again

Last week I wrote about how MS has made me resilient and how I am grateful for that. Since then I've heard from a couple of people who had their own examples of surprising blessings. They were different from my experience but it totally resonated. So.

I need your help.

I want to write part two of this story but I need to hear from you. Has this ridiculous experience facilitated anything that you are grateful for? Please send me a private message and I will share our stories, anonymously of course.

Thanks for reading,

A.

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10.20.2015

Thanks, MS

I am grateful for MS. I know. I just threw up in my own mouth. Tastes like blasphemy.

I am grateful for MS but this is not a post about finding the silver lining or looking on the bright side. I will not ask you to drink from your half full glass of rose coloured Kool-Aid before you put your head back in the sand. 

Let me be very clear.
MS fucking sucks. 

It’s balls. There is nothing inherently good about this loathsome disease and I wholeheartedly believe in saying it sucks when it sucks. Sucks. Sucks. Sucks. I will let it out, feel all the sucky feelings and go through every last miserable moment of sucky grief and sucky angst on the highway to Sucktown. I willingly embrace the consideration of all the terrifying possibilities, the mourning of every loss and of every lost potential. I will scream and cry about it and I don’t want anyone telling me to feel better. 

What I do want from my posse is to sit with me, to listen, to pour me a glass of wine, put their arms around me and tell me they love me. I want them to hand me the box of tissues and tell me they don’t know how it’s possible but I’m even prettier when I'm crying. 

When the dust settles as it always does, I will take a deep breath and say I’m grateful for every single shitty thing that has ever happened to me. Of course it’s way easier to do this long after a crisis has passed. Time affords healing, clarity and perspective. And ultimately, the ability to recognize what I've gained throughout it all and that is resilience. Resilience is one of the most valuable skills we can cultivate and there is simply no other way to get it than through first hand, tough as shit, life experience. MS is the steep price I’ve paid for that which has turned me into rubber. Tough, bouncy, happy, resilient, rubber. 

Most of the blessings we name at Thanksgiving are transient and temporary. Eventually we may lose some of the material things we appreciate, we most certainly will lose loved ones we hold dear and eventually all of us will confront our own struggles with health and mortality. How not to get swallowed up in the overwhelming sublimity of it all?  Giving thanks for the fragile and fleeting can ground us in the present. It is important to count these blessings. But this Thanksgiving I am feeling particularly grateful for something less tangible but perhaps more enduring. Something I might even have a little control over.




Blah, blah, hardship builds character, right? I’m not convinced I would actually choose a strong character over strong legs but since I am stuck with ‘life experience’, when the next MS meltdown strikes I can remind myself that my ability to adapt has been earned and learned and lives deep within me. Even if my body breaks, I won’t be broken. I'm still here. I know how to do this. I'm sure my resilience has a threshold. We're talking rubber, not steel. But I'm surprised and grateful to learn I haven't reached it yet. 

The degree to which we are able to reconcile and coexist with calamity is the degree to which we are able to find peace in our lives.

In the immortal words of the great Chumbawamba, 

I get up again.


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10.08.2015

How to Pack the Perfect Hospital Bag

Whether you're heading to an infusion centre for your monthly dose of Tysabri, getting a course of Lemtrada, or treating a relapse at Spa-umedrol, packing a great bag can make the hours and days of  tedious and uncomfortable therapies a lot more bearable. Since there is no fashion mag dedicated to MS (Ms. magazine is sadly, not about de-mylenating in style), I offer you my best attempt at 'What's In Her Bag? Hospital Edition'. Because fashion is fun. It might be shallow and materialistic but sometimes stuff makes you feel better. Here's what I'm packing for my upcoming five day medical séjour.  

Patent leather bonus: sleazy hospital germs can easily be removed with a disinfectant wipe.

What's in there?
  • Travel Water Bottle Hydration is key when being pumped full of chemicals.
  • Tech I don't have to tell you to pack your iPhone but don't forget your charger. My iPad is loaded with The Mindy Project and Gilmour Girls. (House of Cards is forbidden because that is a watch-together show and I can't betray The Banker like that.) 
  • Pill carrier Getting IV therapy doesn't mean you get to skip your regular meds. Pack OTC's like pain relievers and anti-nauseants to handle unpleasant side effects.
  • Lip gloss Hospitals can be so dry. Chapped lips are gross.
  • Hand Sanitizer Hand sanny is key. Immune systems are suppressed. Hospitals, guys. Ick.
  • Enormous Sunnies In case you want to sleep or be ignored. Or paparazzi.
  • Blanket Scarf Tissue sized hospital blankets are never enough. Though I do love that they come from ovens. 
  • Fingerless Gloves Cold arms mean rogue veins. Guys, I'm always cold.
  • Litt Trashy gossip mags were made for days like these. 
  • Journal For recording any drug-induced moments of genius.
  • Snacks that won't make me barf Vomit suppressing snacks include ginger chews, ginger cookies, ginger ale, my ginger bestie. Basically anything from the ginger family.
I'll also be bringing my mom (because The Banker's gotta bank), who will no doubt have her own giant tote in tow. She always carries Emergency Chocolate. She was a nurse, so. 

What's in your hospital bag?

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