Too Much Time on My Hands

I am honored to have the opportunity to share more of Meg Newark’s writing.  In her guest post today, she shares the journey many of us walk with rheumatoid arthritis and methotrexate – from utter frustration with our condition to the staggering side effects of an archaic – yet maddeningly effective (for many) – drug.  Her wicked sense of humor is palpable, her writing poignantly relatable.

As I’m in the middle of a flair, Meg’s writing particularly strikes me today .. While people often marvel at my positivity amidst sometimes-overwhelming odds, it can still be difficult to remain strong, hopeful and courageous.  I find comfort in her prose and our shared community of strength.  People just like YOU and Meg keep me going.

Enjoy, my Friends.

By Guest Contributor, Meg Newark

Watching Betty White’s Off Their Rockers leads me to think that we as patients need a similar concept show. That show doesn’t run anymore but it was like a elderly version of candid camera.

Betty_White_s_Off_Their_Rockers___NBC

The sick punking the healthy! Calling hilarious attention to all the things we deal with that they simply just don’t get.

After all, I’ve been punked by my immune system. It would be a shame not to pass that sh*t along.

I’ve been outlining my sure to be awkward and cringe inducing reality show concept.

Should it be a vote off like Survivor? The tribe has spoken: you clearly couldn’t hack it like we can. Or a single decision like The Bachelor? I only have one remaining rose and I will be giving it to…me. Because you get to watch and laugh but I am the one who gets to go home with it. I assure you that earns me a rose.

But not to steal anyone’s sparkle, I much prefer a good old gag show. Why? Because I’d like karma to point out and fix what I consider are injustices of this disease by making us laugh.

Track with me here.

Pet peeve: athletes. Runners specifically. Because I miss it! I DREAM ABOUT RUNNING! How about we commandeer a 5K course and rough it up a bit? Not a mud run with visible obstacles. Better…Make people sprint through a field of cow pies with hidden holes, invisible tree roots and uneven terrain. That is what running would be like for me now. A flat surface is scary and unknown…and this one time I twisted my bad ankle because I slipped on a nice wet pile of crap. That really added something to the experience of the ankle twisting.

runner

Pet peeve: RA pharma reps who come into my doctor’s office wearing sky high heels. Taunting me. How about we install some grated flooring in the lobby and watch them get stuck? Because that’s what high heels are now. I put them on and then can’t go anywhere.

high heels

Pet peeve: ‘just take a pill for that.’ Ok, I am obviously not going to recommend drugging anyone. But to understand that feeling of helplessness and frustration and anger, let’s get a gaggle of three year olds. Gaggle defined as 6-10, whatever the mandate is for safe class/daycare size. That should be plenty! We’ll treat them to a lunch of cotton candy and Mountain Dew and let them skip their nap. Then we will hand deliver them to the person who suggests ‘taking an Advil’….to watch for a couple of hours. We’ll pop in to offer helpful, know it all, busy body advice from time after time. ‘You just need to calm them down.’ ‘Its just a child, why can’t you just read them a story?’ And my favorite that I overheard at Target recently ‘Lady, your kid needs to stop crying.’ Throw in some condescending and judgy judgy looks. Maybe a surprise clown or two. I think that would be a fair comparison!

I think I’m onto to something. Now it just needs a name.

Speaking of people whose bodies are trying to kill them, apparently God has heard me making fun of myself and decided to punish me with such a severe flare that I became practically bed-ridden last week.  I got in to see my rheumatologist recently and she put me on a drug cocktail that includes going back on a drug that starts with “meth” and ends with “all-your-hair-will-fall-out-if-you-don’t-take-a-daily-antedote” because it’s a chemo drug.  Why does it work for arthritis?  No one knows.  True story.  It’s in the pamphlet.  Also, a side effect of the drug is that even though it’s a drug designed to battle cancer, IT CAUSES CANCER.  Like, not a lot but enough that they have to tell you you may get lymphoma at any time.  Yay.  And my arthritis has spread so now I can barely walk sometimes.  I can only assume that in the next month I will be writing using only my tongue.  I’m unemployed and would like to cross my fingers that the chemo drug will work but I must face the fact that I can’t cross my fingers because I EFFING HAVE ARTHRITIS.  That’s why I’m going to try out some new money-making ideas I can do from home, like prostitution or knitting.  Except it turns out I can’t do either of those well. Kidding mom… 

Warnings on Methotrexate:

“Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications”

Which sounds ungood, right?  But actually I had been doing ok for the last couple months so technically the worst part was just the treatment itself because it makes me throw up all the time.  So last week I asked my doctor to cut my dose to 1mg injections which was awesome because I stopped throwing up but then I woke up this morning and I can barely walk.

Awesome.

And what really sucks is that NO ONE EVEN KNOWS WHY THIS DRUG WORKS.  They’re guessing it *may* work because it screws up your immune system and keeps cells from growing properly so your body attacks your immune system instead of your joints.  Because who needs a working immune system when you have an autoimmune disease that makes you so sick that your best option is to take a drug that can kill you?  Basically it’s like being stabbed in the neck to take your mind off your stubbed toe.  And that’s why today my feet feel like tiny zombies have been gnawing on them.  See what I did there?

Full circle. Moral:  Rheumatoid arthritis is worse than being attacked by baby zombies.  I think someone has said that before.  Probably Hemingway.

baby zombie

****

About Meg:

At the end of my 29th year, my immune system, in an act of undoubted overachievement, decided to produce too much of a good thing. Suddenly, I found myself dealing with a diagnosis of rheumatoid arthritis, ulcerative colitis and now, Sjogren’s Syndrome. After dates with a million doctors, chronic pain, and a lot of fear and questions (including, will I ever get to wear heels again?), all the while trying to keep up with my busy life and a newborn…I became this new person. No longer a police officer and fighting crime…now just fighting to live awesome in spite of pain. I write humor bits on my FB page about life and my family. Someday my kids will get all these bits printed out in a book for them so they can see I fought everyday to be the best I could be for them!