I’m A Jalopy, Or Where I’ve Been Lately

Imagine your car has been running a little sluggish lately. It’s older and rundown, but it still gets you where you need to go…most of the time. You kinda wanna have it checked out, but money’s tight and the last time you took it in, the mechanic made you feel like an idiot. So you keep putting it off.

Then one day you’re driving along and you run out of gas. You’re coasting on fumes, trying to eek out that last little bit to the gas station. But you’re also overdue for an oil change, not sure when you last had the fluids topped off, and it’s a HOT day. Suddenly smoke comes pouring out from under your hood. Your car shudders to a stop and lets out the most horrible noise. You didn’t even know metal could groan. You’re still a couple blocks away from the gas station, you don’t have roadside assistance, and you’ve just realized you left your wallet at home.

Think of how frustrated you’d feel sitting in that broken down car. You can’t fix it or trade it in, you’ve just gotta find a way to patch it together once again. How many breakdowns before you get really angry? How many times does this happen before you start screaming about how life isn’t fair?

Now imagine your boss/parents/friends are calling to find out why you’re late again. Instead of coming to help, they tell you to just get out and push the car to the gas station. They send you links to tutorials on changing your own oil and articles on the benefits of electric cars. When you try to explain your circumstances, they tell you you’re not trying hard enough. If you really wanted your car fixed, you’d take their advice.

How long before you dissolve into tears?

Imagine this playing out every month, every week, every day. Imagine your car breaking down EVERY SINGLE DAY and you are powerless to stop it, too broke to afford repairs. What would you do?

Now imagine it’s your body…

This is the reality of chronic illness.

My body is a rusty, old jalopy. My tuneups and oil changes are trips to a slew of doctors and the Remicade infusions I receive every six weeks. Most of the time, this car makes it through. But just like you’ll never know how long that belt will last before it snaps or how long you have before your transmission starts slipping, I never know when a flare will hit me.

Things like stress, colds and allergies, travel, and weather can all trigger a flare. Sometimes I can push through the pain for a little bit, but it always catches up to me. Then I’m the smoking heap of metal on the side of the road.

I do my best to take care of myself as much as I can. I take my oral medication and vitamins every morning and evening like clockwork. I have regular checkups with my doctors. I exercise as much as I’m able, usually walking each day with my little doggy and yoga a few times a week. I have stretches from PT that I do every day to keep the tendons in my feet from getting too tight and to strengthen the muscles in my chest and back to support my breathing. I see a therapist weekly to work on stress management, as well as coping skills for depression and anxiety.

But deep down my body is still rusty and far older than my 33 years.

There is no cure for Rheumatoid Arthritis or any of the other autoimmune conditions I have. There is no fix, I can’t just go out and buy a new body. I must keep patching myself up the best I can, add a few more dollars in gas, another quart of oil.

And cross my fingers that today isn’t the day I don’t end up smoking on the side of the road…

As you might have guessed, I’ve been a smoking heap these last few months. Each time I thought the flare was easing up, I’d be thrown back into the thick of it, beaten back by overwhelming waves of pain.

I’ve worked hard to be gentle with myself, to practice self-care, and to rest like the doctors tell me to. Unfortunately, that impacted my writing a great deal. If my wrists were up to some typing, the rest of my body was screaming from sitting upright. If I could sit up, my wrists and arms hurt from trying to type. So I cut myself some slack and looked for release in other creative outlets as much as possible. And I napped. A lot.

I’m still flaring, still fighting back waves of pain and swollen joints. I talked with my rheumy about my options and this week I took my first dose of Methotrexate. It’ll take at least six weeks before we’ll see how it helps me, so I’m on continued orders of rest through the holidays.

I’m determined to not sink into the dark  that so often accompanies a flare for me. I’m crafting when I can, snuggling with my doggy often, and coloring my cares away when my hands allow it.

I’d like to say I’m back, but I know putting expectations on myself only furthers my frustrations when I can’t meet those expectations. So I’ll simply say that I’m here. I’ll write when I can and rest when I can’t. If you’d like to see what I’m up to when I’m not writing, check out my Instagram. My smart phone has been my constant companion lately, and I’m often posting pictures of my projects, my doggy being cute, and the times I say “Eff the pain!” and go out with my husband.

Because sometimes you have to live, no matter how beat up you feel.

**My undying gratitude for all your support, love, and patience. I hope to be back to me soon!

Truthful Tuesday: Pain Is Bullshit And Other Life Lessons

I started flaring early this month leading into my Remicade infusion on the 7th. Usually the flare recedes a few days after an infusion, however this one has held on. Part of that is because I pushed past my boundaries to go romping around on the beach with my doggy and husband. That part I don’t regret, no matter how badly I hurt today.

Another reason the flare has held on is that my insurance company denied the pain medication my doctor has prescribed to help manage my pain. The insurance powers that be wanted me to see a pain management specialist but my doctor wrote them a fine letter explaining how my pain is already managed with a treatment plan co-devised by him and my rheumatologist and it would be a waste of their resources (and money!) if they insisted I see a pain specialist (for whom they would have to pay). Especially when said specialist would likely recommend I continue my current treatment plan. The insurance company finally approved the medication, but the whole process of paperwork and appeals took over a month. Which means I had to taper back my normal doses, holding back pills for an emergency, until even those ran out and I was without any relief for over a week.

I repeat, pain is bullshit.

Since this flare hit my hands and wrists especially bad, I  had to take a break from writing and social media. Typing, even with my handy new braces, is a big OUCH!

I’m still flaring and feeling ouchy, but I’m determined to get back to my routine. I miss it! So I’m here today to share a few truths I’ve picked up from my recent couch assignment.

* Commercials are ridiculous. Like, absolutely asinine. In my better (or worse?) moments I find myself arguing with the commercials, mocking their outrageous claims. It’s probably a good thing my doggy can’t talk or he’d have told me to shut up more than once by now.

*My doggy is super sweet in that he can tell I’m hurting and he wants to comfort me. Unfortunately, his form of comfort is laying on my feet. Which hurt. It’s hard because I know he means well, but man…ow!

*My darling husband deserves a medal for putting up with me these last few weeks. He’s picked up the slack around the house, cooked meals for me, taken over Toddy’s care when I can’t move, and listened to my whining. All while pulling extra shifts at work. Man, he’s amazing!

*Our trip to the coast was WONDERFUL! We relaxed, thrift shopped, explored, and sang along with the radio. We took a couple hundred photos, had breakfast outside on a secluded patio at a little cafe that even had a canine menu, and delighted in seeing Toddy romp around in the sand. We talked and laughed and smiled and gazed out at the Pacific Ocean for hours on end. It was just what we needed and we’re extremely grateful for the wedding gifts that made our trip possible.

*It is possible for me to smile through a flare. Many people who see me out, even those who know me somewhat well, assume if I’m out watching my husband play music or out playing with my doggy that I’m not in pain. In fact, last weekend I went to watch Scotty’s show despite being in horrid pain. It’s important for me to still LIVE. I know Scotty would understand if I chose to stay home and rest, and there have been times where I’ve done that. But what many don’t understand is that the pain will always be there, on some level. I can’t put life on hold waiting for a day when I won’t hurt. And so yes, sometimes I go out even when it hurts to have real clothes on. I do my make up and hair, even though I’m probably borrowing against next week’s spoons to do so. I smile, laugh, and enjoy myself because life is going to happen whether I’m hurting or not and it’s important that I not let it pass me by.

*Therapy is opening my eyes to so much and I’m enjoying this work on myself. Some weeks are harder than others, but all in all, it’s going well. I love that my therapist incorporates my creativity into my therapy, so that it feels like I’m just crafting or having fun, but I’m actually working on me. That’s good stuff right there.

I appreciate all the patience and support while I’ve been laying low. I’m trying to get back into the swing, hopefully it won’t take too long 🙂 If you’re missing me here, check out my social media links above. I often post on Instagram even if I’m quiet other places, so be sure to follow!

If He’s Mario, I’m Princess Peach. Always and Forever.

If you follow along on the book of faces, (and if you don’t, why the heck not??) you already know that today marks six years since Scotty and I had our first date.

Each year I write a post to him, a love letter looking back on our time together and promises for our future. This year, I wasn’t sure what to write. Since we were just married a few short months ago, what could I possibly say that hadn’t already been said?

It’s odd. As a writer, you wouldn’t think I’d struggle to find the right words. But I do. The words there are just don’t seem to be enough to fully express all the love in my heart. At our wedding, my brother read a poem by Wilfred Arlan Peterson. (Though, at the time, we believed it was the letter Paul Newman wrote to his wife for their wedding. In fact, Mr. Peterson’s poem was read at the wedding, but it is indeed his and not Mr. Newman’s.) 

Afterwards, Scotty and I exchanged vows we had written ourselves. Today, as we celebrate six wonderful years together, I can think of no better words than the ones I promised to him that day.

*No, I didn't use nicknames in the ceremony. But I do still like to keep them here for Scotty and Jojo. Photo by Kristen Godbey, edits by author. All Rights Reserved.
*No, I didn’t use nicknames in the ceremony. But I do still like to keep them here for Scotty and Jojo.
Photo by Kristen Godbey, edits by author. All Rights Reserved.

Happy Anniversary, Scotty. Here’s to many more years of love, friendship, and happiness <3 Thank you for making me a princess.

Aren’t we adorable?

10 Reasons My Dog Is Better Than Yours

October is Adopt a Shelter Pet Month.

Our little Toddy is a former shelter pet, though he had another home before he came to us. When Scotty and I started talking about possibly getting a dog, we agreed from the very beginning that we wanted to rescue a pet, if at all possible. There are so many doggies waiting for forever homes out there, we wanted to help them instead of spending a couple months of rent for a puppy from a breeder.

The universe helped us out in a different way, though, when we got Toddy. His mama (who had rescued him from the shelter) had some changes in her circumstances and needed a new home for him. She was a great mommy, and wanted to make sure Toddy’s new family would love him as much as she did. Each day Scotty and I are so thankful she (and Todd!) liked us and let Toddy come to live with us 🙂

Toddy was a bit shy at first, but he warmed up to us pretty quickly. Over the last year and a half he’s completely taken over our home and our hearts. Wherever we take him, we always get compliments on him. So I decided today I would share the top ten reasons Toddy’s the best.

This face!


He doesn’t get into the garbage.

He loves to play with his stuffed toys.

Toy Time

He’s never had an accident in the house.

He loves snuggles and sleeping in.

Toddy In Bed

He kisses my knuckles gently when my hands are swollen and flaring, as if he’s trying to heal them.

He loves car rides and is very well behaved in the car.

Car Ride

He likes to learn new tricks and is super smart!

He’s a great protector and guard dog. He can tell me before I even open the door if it’s a friend or not.

Guard Dog

He has saved me more than once. Last fall when I unknowingly inhaled pesticide, he rushed me home when he noticed I was starting to feel woozy, without my having to say a word.


See, don’t you agree my dog is the best? Possibly even better than yours, right?

If you’re looking to add a pet to your family, I strongly urge you to check your local shelter and rescue programs. There are so many animals out there who’ve had a rough start to life and are just looking for someone to love them. I can promise you, it’ll be the greatest feeling when you see the joy in their little faces when you bring them to their forever home.

**This post is linking up with the Tuesday Ten at The Liebers and The Golden Spoons. Join up, check out the other posts, and leave lots of love!

Truthful Tuesday: Bloody, Bloody…Tuesday?

Because the rest of the internet is freaking out about the recent blood-super-moon lunar eclipse, I figured I’d jump in. Cuz why not, right? It seemed apt since I had a lab appointment this morning and the tech took ten vials of blood from me. TEN. Seriously, I know I have some health issues, but WHY DO YOU NEED ALL MY BLOOD FOR?!?!?!?!?!

Ahem. Apparently because my calcium and vitamin D levels aren’t playing well, and I have a protein marker off and possibly this means nothing at all is wrong with my parathyroid glands or possibly I need to see an endocrinologist. So ten more vials of blood will hopefully give the answers we’re needing. Me, I’m wondering if they’re not just stocking up blood for a particularly gory Halloween display.

While I was sitting there, trying not to pass out from blood loss and hunger, I was wondering what I was going to write about today. Then I complained about it being Monday and the tech informed me that it was, in fact, Tuesday. Since I missed Monday all together, I figured it was high time for a Truthful Tuesday. Here are my truths today:

*It’s a good thing I don’t have a fear of needles considering how many times I get poked on a regular basis. Lab work and a flu shot this morning, my infusion next week. Which has me thinking I really want a new tattoo. Hmm…

*Why is it my doggy wants to nap all day long, but the second I sit down to write or bust out the crafting gear, he’s snuffling around asking to play? After all this time, one would think he’d be on my napping schedule.

*Art therapy has been such a well of joy in my life. I’ve learned it can mean a little something different for everyone, which is definitely part of its beauty. For me, it’s journalling in a kind of scrapbook style. It’s creating greeting cards to send to people I love or to donate to awesome groups like Pippa’s Happiness Project. It’s grabbing my adult coloring book and pretty colored pencils and losing myself in the abstract designs.

*I’m easily distracted lately. Like, more so than usual. It makes writing fairly difficult. I may or may not have just spent a ridiculous amount of time singing along to Pink at the top of my lungs while playing Panda Pop. Did you know I adore pandas? I do. I want to cuddle them all, even if they might eat my face.

*I recently hacked off my hair. Even more of it. I now have an asymmetrical bob/pixie cut. It’s super fun and amazingly easy to keep tamed. (I’ve been posting new looks on Instagram, so be sure to follow me so you can see!) I’m also experimenting more with makeup and my personal style. Trying to find the me I want to be, not the me everyone has told me to be. It’s much more complicated than I ever thought, but also extremely freeing. I’m thinking of adding purple and blue streaks to my hair next!


Rain, Rain Wash Away My Pain

I awoke to a deep ache in my body that spoke of rain hours before the first drops started sprinkling down. As much as I love rain, my body does not.


I’m no scientist or doctor, I only know my experience, and that is my body always flares when there’s a significant change in the weather. And ALWAYS when it rains. I suspect it has something to do with air pressure, but again, I’m no scientist. Still, my love for rain means I threw open the front door this morning so I could breathe in all that fresh goodness.

Then I curled up in jammies to baby my achy body and wished for the rain to wash away this pain.


Getting To Know Me, Old School Style

The lovely Tamara went old school today and it made me excited, so I decided to join in. Besides, it’s always nice to have little “get to know me” moments for any new readers who are wondering how they landed here (I haven’t the foggiest, sorry.) and why I’m as nutty as I am. (My therapist and I are working on that, I promise.)

Anywho, so I’m linking up with Tamara, who happens to be linking up with Elaine. We’re going way back with some ABC’s. Feel free to play along, I’d sure love to get to know you all better. You, on the other hand, may be rethinking your desire to delve into my mind…

Ha ha ha sucker!

Ahem. Right. Here we go!

A- Age: 33

B- Biggest Fear: Heights, specifically bridges and such where I can look down and see my death. Nope, no thanks. Also, the usual- something happening to my husband or kiddo, snakes, rodents & creepy crawlies. (RATS ARE NOT CUTE. EW EW EW!)

C- Current Time: 1:30 on a Wednesday afternoon. Which shows you exactly how much time I wasted puttering around on the book of faces this morning. I may need help… (didn’t we establish this already??)

D- Drink you last had: Red Gatorade. IBS is not playing nice lately and I need to replace some electrolytes.

E- Easiest Person To Talk to: Kristen. She just gets me, without a lot of explanation or questions asked. Which, given what I’ve shared, makes me wonder about her sanity often.

F- Favorite Song: A Place For My Head by Linkin Park

G- Grossest Memory: Um…I’ve had some doozies. Let’s go with when I had sinus surgery earlier this year and my tear ducts were leaking blood. Yup. Directly upon waking from anesthesia. Try not freaking out over that, no matter how calmly your husband is telling you that the surgeon said it’s normal.

H- Hometown: Hicktown USA.

I- In love with: My husband. Our doggy. Chocolate. Happiness. My kiddo. Our framily. Therapy. Writing. Music. Chester Bennington and Johnny Depp. True crime shows and stories. Good food. 


J- Jealous Of: Millionaires. Healthy people. Those people who can eat a feast and never gain a pound. 

K- Killed Someone? A bird used the front of our car as his instrument of death and I’m still traumatized by it. Poor birdie.

L- Longest Relationship: I’ve been in a love-hate relationship with myself for the better part of three decades, does that count? Also, my handsome husband and I will be celebrating six years together next month <3

M- Middle Name: Marie. Or Maria, if you’re my middle sister.

N- Number of Siblings: 13 all together, but only 2 half sisters I claim and one I just found out about, the rest are by marriage and I only associate with a handful. Family is complicated, damnit.

O- One Wish: Happiness.

P- Person who you last called: My doctor’s office. I need a prescription refilled before my upcoming appointment on Friday.

Q- Question you’re always asked: “What’s your pain, on this scale of 1-10?”


R- Reason to smile: My husband. My son. Our little doggy. Framily. Chocolate.

S- Song you last sang: The Hand That Feeds by Nine Inch Nails. Probably one of the few songs of theirs I can tolerate.

T- Time you woke up: Around 7am, though I stayed in bed until closer to 9am. It takes a lot to get my body up and moving in the mornings. Morning stiffness from RA (not to be confused with something much more fun and inappropriate) is hard. Ahem. Pun NOT intended.

U- Underwear Color: Black with hot pink lace trim. It sounds sassier than I really am. For someone who doesn’t really love pink, I sure have a lot of it…

V- Vacation Destination: Europe.

W- Worst Habit: I interrupt a lot. I don’t really mean to be rude, but my brain loses things so frequently nowadays, it’s like I have to say something as soon as it pops up or POOF! It drives my husband nuts, both the interrupting and the forgetting. I imagine it’s like having a conversation with Hammy from Over The Hedge.


X- X-rays you’ve had: Too many to keep track of. Most recently, I believe, was of my feet and ankles so that I could get fitted for orthodics to help with tendinitis.

Y- Your favorite food: I’m a firm believer that cheese, bacon, butter, or chocolate can make everything better. Don’t believe me? Try it. Pasta? Yup, add some more cheese. Potatoes? Cheese, bacon, AND butter! Popcorn? Butter. Or chocolate. Or both, if you’re feeling feisty.

Z- Zodiac Sign: 


That’s it. If you don’t know me by now, well…you will never, ever know me, ooh ooh ooh. Right. I also like to insert random song lyrics into every day conversation. Again, I’m working with a therapist, okay?

Thanks for sticking around and learning a bit more about me. If you’re gonna join up, be sure to leave your link in the comments so I can pop on by and read! Happy hump day, y’all, we’re just a little bit closer to the weekend. To celebrate, go do something silly 🙂

I’m Not Giving In

My adorable husband took me out on an impromptu date last night. Burgers, fries, and amazing chocolate milkshakes. Time away from the same four walls, away from social media, time away. We talked about our days, goings on around our worlds, and smiled like giddy newlyweds across the table.

While out, we bumped into one of Scotty’s former co-workers, Am. Though we’re all on the book of faces, we haven’t seen Am in at least a year, probably closer to two. Life gets busy and time passes by before anyone knows it.

While chatting last night, Am and I talked about how we’ve each found a new baseline in our lives, and what that means for us. It brought up a valuable point I see debated often among many spoonie communities online.

Does accepting my life as a spoonie mean I’m giving in?

For the whole first year I fought against chronic illness. I fought my symptoms, fought for normalcy, and fought against the reality that my life was forever changed. It took another year to find a balance between the reality of disease and keeping a positive vibe throughout my life. This last year and a half has been learning to accept my new reality while still finding joy and purpose.

Many people view acceptance as giving in, but I don’t. I can accept that I have RA (and a slew of other issues) while still fighting every day for the life I want to live. It’s not giving in, it’s adjusting. It’s not giving up on your dreams, it’s finding new ways to continue to chase them. It’s learning how to let go of the person I thought I would be, the healthy person I was, and embracing the person I was meant to become- the person who lives well in spite of each and every curveball thrown her way.


Don’t get me wrong, there are still bad days. There are still days where I lay on the couch in tears. Tears not from the pain, but from frustration at the things I can’t accomplish because of that day’s pain. It’s still a daily struggle to be gentle with myself, to accept what I can do without berating myself for what I can’t do. It’s a daily lesson to see these things not as limitations, but as a lifestyle change. A vegetarian doesn’t see their diet choices as limitations, they’re a part of a lifestyle. My inabilities (and abilities!) are not limitations, they are part of my new lifestyle.

What was the hardest part of accepting your chronic illness? Would you agree that it’s like a lifestyle? Why or why not?

Fast Five Faver Friday

My gal Joules started doing this Faver Friday thing where she’s sharing stuff she likes. Or loves. Or big puffy hearts. Her favorites, as the case were.

Well, Joules is one of my favorites. Her ginormous heart makes me smile even when I feel yucky, and her brain makes me a little jealous sometimes. She’s one smart cookie. You know, the kind with both chocolate and butterscotch chips.

So today, because imitation is the sincerest form of flattery, I’m sharing some of my favorites. Five, to be exact, because otherwise it wouldn’t be a Fast Five Friday. (Where did that even come from? Will one of my blogger friends please tell me if this is an actual link up thing and who I should be crediting? Thanks!)

These packages of heaven will be happening at my house very soon. Chocolate. PB. Marshmallows. Melty. What’s not to like? I’m already dreaming of different combinations. Butterscotch and coconut anyone?

This amazingly brave doggy. Her equally amazingly brave human. The people who came together to celebrate her special life and all of her awesomeness.

These coincidences. Because laughter is absolutely great medicine. Unless you’ve just had abdominal surgery, in which case, maybe you shouldn’t click. Also, some are possibly NSFW, so be careful, k?

Also this. Because Jimmy whipping is pretty great. And Ellen. And JT. Go on, smile. It’s good for you.

This. I made this video yesterday for World Suicide Prevention Day. Yes, it’s a bit raw and absolutely serious. It’s me putting it all out there because if we don’t start talking about mental illness, we will keep losing loved ones. And I don’t want to lose anyone else.

The sentiment still stands, yesterday, today, any day. Go out and be fearless. Hug someone. Spread joy, and love, and kindness. You’re worth it and YOU MATTER.

Have a great weekend y’all. I hope you do something for you, and I hope you’ll come back here and share it with me.

She Said What?

If I’ve learned nothing as a grown up, it’s that words do in fact hurt me. And you, probably.

Maybe that old nursery rhyme was meant to boost us up as kids, a way of saying, “Just shake it off.” Sadly, I’m not sure it’s very helpful. Words hurt and heal. Sometimes words meant to heal actually hurt more.

I struggle with many of the so-called inspirational sayings out there. You know, the greeting card coverall phrases meant to make you feel all warm and fuzzy and uplifted. Instead, they get under my skin, more irritating than a bad case of poison oak. Add a couple together in a Facebook post, and I’m apt to scream. Or grumble. Or argue at the inanimate social media tool that is my smartphone. I’m nice and grown up like that.

Pain is gain.

Bullshit. Lemme trade pains with you for five minutes. I’ll bet my favorite bar of chocolate you won’t make it 90 seconds. Pain hurts. You know why it hurts? It’s your brain telling you that something is wrong! So unless you’re talking about gaining that little bit of helpful knowledge, get on out of here with that mess.

God only gives us what we can handle.

Is that so? Well someone get me a direct line to the big guy, cuz I’ve got a bone or two to pick with him. Equally annoying is telling me to pray about my pain. Listen, you do your prayers and I’ll do mine. Personally, if there’s anyone upstairs listening to me, I’d rather pray for my loved ones, the troubles in the world, and that my fantasy football team wins this year. Kidding. Maybe. Regardless, praying does not make the pain go away, it does not make it feel better. In fact, it forces me to focus on it, which is the exact opposite of what I want to do. Like, step on this piece of glass right here. Is it slicing your foot open? Does it hurt? Now think…do you want to focus on that pain or distract yourself from it?

You were given this life because you’re strong enough to live it.

Really? Really?? Who decided this? Where was I? Why didn’t I get a vote? I demand a damn recount already. You know what this says to me? That I somehow deserve this agony. That somewhere in the universe it was decided this was my just reward (punishment??). Newsflash: This is not the lottery I wanted to win. Or possibly, it means I possess the necessary tools to handle this life with grace and I should just be floating around like a butterfly of damn gratitude. NO. Just…no. Whether or not I happen to have certain personality traits doesn’t really matter, this life is still hard. It’s hard if you’re a pro athlete with a team of the best medical minds and access to all sorts of alternative therapy, and it’s hard if you’re the average 30 year old trying to figure out how to get Medicaid to cover a hot tub and weekly pedicures. (FYI They won’t cover it. Jerks.) It is HARD. And I don’t care how strong someone somewhere thinks I am, I definitely didn’t deserve chronic illness.

I don’t know how you do it! You’re such an inspiration!

I’m sorry, was there a choice some where along the line that I missed? I do it because I must, there is no other option. It’s not like I can just wake up and be all “Yeah, I’m just not feeling it today, RA/Depression/Narcolepsy/{insert chronic illness of your choice}, so you’re gonna have to just chill today, k?” Right. The only other option is to lay down and give up, and I made a deep promise to never do that. I have so much to live for, so much to keep me fighting, and so guess what? I do. As for being an inspiration, meh. If my getting out of bed is inspiring to you, cool beans. I don’t mean to dismiss it, but I battle with the idea of someone looking up to me. Especially if you could see how often I struggle, how often I break down and beg the stars for just a little relief.

Science is changing everyday! I’m sure they’ll find a cure and then you’ll be fine.

Look, science is freaking amazing. There are days I wish I had paid more attention in biology/chemistry/anatomy in school. Maybe then I’d have some clue. Maybe not. And yeah, when I say those prayers we talked about? I always, always include a prayer for a cure. Because there are babies each and every day getting diagnosed with Juvenile Arthritis. Kids, toddlers, sweethearts who will never know a life that doesn’t include pain and how to live around it. So yeah, I pray for a cure. The harsh truth is that a cure won’t much help me at this point. The disease is active and has caused much damage already. So even if I could drink a magic potion tomorrow morning, the damage would still be there. And that damage, the complications from my multiple chronic illnesses, is really what is such a beast. So yes, let’s find a cure for the babies, please. Dear God, PLEASE. But no, I won’t be fine.

I know it sounds like I’m being horribly ungrateful right now. People want to say sweet things to me, I should be so very happy and gracious, yes? Except I’m explaining why these things you think are sweet, aren’t so sweet, to me anyway. So what would I like to hear? Compliment me on my new haircut, tell me how you liked something I wrote. Looking for something to cheer me up? Share a funny joke or picture. Laughter makes everything better 🙂


What sayings bother you? What would you like people to say instead?