An Open Letter To Chronic Illness

We’ve not known each other long, dear, but you’ve insinuated yourself into every aspect of my life. In fact, there is not a part of my life that you’ve not touched, and I thought it was time I finally told you how I really feel about you.

I resented you when you first showed up. And honestly? There are still times where I resent your presence and everything it means. I hate all the things you’ve stolen from me, but more importantly, all the happiness I’ve let you take. I despise the impact you’ve had on me, my relationships, and my body.



Your arrival has changed my life in many positive ways, and for that, I must thank you. You’ve strengthened my relationship with my fiance, even while you’ve made life harder. Without your pushing your way into my life, I wouldn’t have found how strong I truly can be. I wouldn’t have met some of the most precious people I’ve ever known. I wouldn’t have followed my dreams.

I do hate how your presence means a revolving schedule of doctor appointments, medications, and sleepless nights. I don’t like our days spent curled up on the couch together or the times you keep me from my favorite activities.

But I have to admit I like how life has slowed down for me since you’ve been here. I am grateful for your forcing me to stop and smell the roses. Without you, I’d probably still be rushing about, now I know how to appreciate the quieter pace. When you came along and showed me how short and hard life can be, you taught me to treat every day as a gift, and I’ve tried very hard to do that.

Overall, I suppose I’m grateful for all you’ve taught me, though I wouldn’t say no if you wanted to take your leave. You’ve made me stronger and more compassionate, even while your pain feels as though it’s tearing me apart. The conundrum that is our relationship is both a blessing and a curse. And I suppose that’s the way it must be.

In closing, I must thank you for changing my life. For all the good, and yes, the bad as well. I suppose you’re now very much a part of me, and I don’t quite know what I’d do without you.

Keep on living, I guess.

Mondays Are For Gratitude, Even Sore Mondays

I’m moving a little gingerly today, but I’m really not complaining about it. Scotty and I spent yesterday visiting our friend, Amanda, and her dog, Sprout, at their little farm just outside of town.

Sprout and our little Toddy are becoming the very best of friends, and Toddy looks forward to days where we can go play with Sprout. Usually we go to the dog park together, but yesterday we visited them at home so us humans could play some cards and have dinner together.

After a lovely weekend with Scotty, capped off with a great night last night, I’m in the mood to share some gratitude.


*I’m grateful for good times with great friends. For laughter over games, yummy dinner, and heartfelt talks.

*I’m grateful for understanding and compassion, for a friend who gets it when I need to rest or move a little slowly than the rest of the group.

*I’m grateful for my doggy, and the joy he brings. For the opportunity to watch him chase a goat, play with horses, and run his little heart out.

*I’m grateful for a weekend to relax with Scotty. For time to wander through some second-hand stores and for the gift card that meant we could grab a cup of coffee together.

*I’m grateful for the ability to rest at home today, to recuperate after yesterday’s fun. I’m eternally thankful that Scotty works so hard to provide for us, and I’m given the freedom to care for myself as needed.

*I’m grateful for emails from my gals checking in on me when they know times have been tough lately. For their understanding when I flake out because life has completely turned to chaos these past six weeks.

*I’m grateful for my youngest sister, who has been creating personalized work out videos for me. She’s taken my health restrictions into account, and is helping me to be a bit healthier in spite of RA.

*And I’m grateful for the love with which I’m surrounded every day. From Scotty and Amanda, from the sisters of my heart. From adopted family, and blood. And from our doggy, who is currently snoring while he naps.

I think I’ll join him ;)

What are you grateful for today?

Finding Paradise

Paradise sounds awful good right about now.

I can close my eyes and picture warm, sandy beaches. I can smell the salt water, and see the sun shining bright. I can feel the light, cool breeze blow against my skin, just the right amount to keep from getting overheated. If I dream a little harder, I’m there lying on a blanket with a good book to read, and something icy to drink. I can see my doggy chasing the waves lapping at the shore, and my love is next to me strumming a sweet song on his guitar.


Yeah, paradise sounds great right now.

Things have finally calmed down in my home, but life still has its struggles. There are still bills to be paid, chores to be done, and health problems to be managed. There’s still worry and anxiety, and plenty of other things I’d love for those waves to wash away.

Since that sunny, warm beach is as far away as my other dreams, I’ll have to make my own paradise right here.

So today will be spent making my home resemble a home again by getting caught up on those chores. Then I will do what makes my heart sing, and devote some time to crafts while listening to music and singing along.

And maybe, just maybe, there will be a fruity drink with a little umbrella for me to sip on.


Chosen Family

Family comes in many forms. There’s the family into which we’re born and the ones into which we marry. There’s also the family we choose.

Most of my adult life, I’ve found myself drawn to people whom I call family, though we share no blood connection. Instead we are bonded by something stronger, a love of choosing, not obligation.

My chosen family has held me up when I thought my life was ending. They held my swollen hands as we learned of my diagnosis, and have walked by my side all through this life with chronic illness. They have watched Scotty and I fall in love, and have celebrated each memory with us these past five years. They will be the ones at our sides this summer when we make our promises to each other, and they will be the ones dancing into the night with us afterwards.


My chosen family are angels who make dreams come true, who make the impossible possible. They hold me up when I’m sure I can’t stand on my own, and have shown me just how strong I really am. They answer midnight text messages and phone calls, and have held me over the miles as we mourned together. They are the sisters and brothers and surrogate mother I never knew I needed until they came into my life. And now I know I could not live without them.

I will always love the family into which I was born, and the family into which I am marrying, but this family of my heart? They are my heart, always.

Do you have a chosen family?

Ask Away Friday, All You Need Is Love!

Happy, happy Friday!

This week has been a long one, so long in fact, that I went around thinking yesterday was Friday all day. Which made me look like a bit of a dolt on the old Tweeter machine, but there ya go.

The exciting thing about this Friday is that I’m finally swapping with the lovely Tracie, my sister from another mister. You may remember a while back when Tracie’s husband and Scotty swapped questions, now it’s time for us ladies.

If you don’t know Tracie yet, you be sure to hop on over to her place and get to know her. She’s a pretty awesome lady who shares her voice for survivors everywhere, a home-schooling mama to one fantastic little girl (whom I’ve adopted as my niece), and a writer who can spin her words into the most vivid imagery. I promise you, you won’t be sorry for heading over.

This week Tracie and I decided to get in the spirit of the upcoming holiday, and talk about love, Valentine’s Day, and our very special men. So grab a box of chocolates and put on your favorite chick flick, it’s about to get all kinds of sappy up in here.

1. When you were a kid, and you had classroom Valentine’s Day parties, did you make your own valentines, or buy them from the store?

It’s funny, I can remember making my own valentines, but I think we mostly bought them. Maybe I made them in kindergarten and first grade?

2. What movie or book about love do you….well, love?

Well you know I love the love story in the Outlander series and I still want the “Talk Jamie to me” t-shirt. But, love movies are a different story. Dirty Dancing- Because of his speech at the end. “A person who’s taught me about the kind of person I want to be.” I like that. Love shouldn’t be about changing someone, but you should inspire growth within one another.

3. “There is never a time or place for true love. It happens accidentally, in a heartbeat, in a single flashing, throbbing moment.” ― Sarah Dessen, The Truth About Forever (Full disclosure: I’ve never read this book, but I find the quote interesting.) What do you feel about this quote in light of your own life – is this how love started for you?

In a way, yes. Scotty and I certainly weren’t looking for love when we first started chatting with each other. Instead we found great friends within one another, and then all of a sudden, I realized I was head over heals for him. And it happened completely by accident. I do believe there is a time and a place, in so far as I believe things happen when they are meant to, love included. Had Scotty and I met five years sooner, we would have been different people, and possibly not ready for the love we’ve found.

4. Have you heard of the five love languages? Gifts, Words of Affirmation, Quality of Time, Acts of Service, and Physical Touch. Which one best matches your heart, and which one best matches Scotty’s?

LOL My first mother-in-law actually bought me this book to try to help my first marriage. Here’s a tip folks- Books like that only work if both partners are interested in trying it out.

As for Scotty and I, I think we both have two love languages that work together to make us feel loved the best. For him, it’s Words of Affirmation and Physical Touch. For me, Acts of Service and Physical Touch. We both really crave that hug at the end of the work day to feel reconnected, and it’s a pretty good indicator that something is amiss if we go a whole day without a hug or holding hands. But where all the little things he does to make my life easier speak to me, he really needs to hear the words. So I leave him little notes with his lunches, or text him throughout the day while he’s at work. We’re cute like that.

5. Did you ever take one of those quizzes in Seventeen magazine to figure out if “he really loves you” when you were a teenager?

Oh.My.Gosh. All.The.Time!

6. All of us old married (and almost married) people need to keep the spark alive. What is your favorite date night idea that doesn’t cost a lot of money?

I love curling up with a movie or TV show at home. Scotty and I will pop popcorn and share M&M’s. I also like game nights with board games or a deck of cards.

7. Do you believe that love conquers all?

I think so. But a person needs to be open to it. I think people can be hurt in life, and in turn close themselves off to the possibility of love. Which breaks my heart, because there’s so much love out there just waiting to be given and taken. You just have to open yourself up a little.

Okay, a lot.

8. Do you and Scotty have a special song? Is it a love song? Or just a song that the two of you love together?

This song was pretty popular when we started dating, and I just loved how the lyrics seemed to be about us. On our first anniversary, he had a gig, so I surprised him with a party at the gig, complete with his band singing this song just for us to have a dance together. That’s one of my favorite memories, there <3

9. What is your favorite quote about love?


10. What do you love most about Scotty, and what would you say does he love most about you?

His answer when Thomas asked him was:

While it’s easy to say her smile or her eyes (because it’s true), I’d rather focus on a part of what makes her *her*. I truly love her generosity. She always tries to find ways to create pick-me-ups for friends, the time she spends helping others, all the things she does giving of herself. She is one of the most selfless people I know.

Aw!! Right?!

And for me: I love Scotty’s passion. If you could see how his face lights up when he plays his guitar, you would know instantly what I mean. And he has that throughout his entire being. He has a passion for learning, for music, and for love. He has a heart like no one I’ve ever known. Everything in his life, he approaches with an open mind and a heart full of passion. That’s pretty admirable, if you ask me.

Oh goodness Tracie, thank you so much! This swap was loads of fun, and I am so happy to leave my weekend on such a positive note.

I hope you all enjoyed this little bit of love. Now go have a great weekend, and spread a little of your own love. The world could use some :)


Truthful Tuesday: The #ChronicLife Edition

Since yesterday morning I’ve been live tweeting my life with chronic illness with the #ChronicLife experiment started by The Hurt Blogger.

I’m not sure what I expected when I decided to join in, but I certainly didn’t anticipate the overwhelming support and camaraderie. As I tweeted through failed naps, pain, and my daily events yesterday, I gained new followers, favorites, and retweets in droves. As my phone kept chiming, I stared in wonder. I will forever be grateful for this experience.

So today I decided to open myself up to questions, both from my followers, and anyone who might be curious about life with a chronic illness. In that same thread, I’m sharing a few bare truths here, things about life as a spoonie that no one really talks about. I hope you’ll follow along here, as well as on Twitter, and if there’s anything I haven’t covered, please go ahead and ask!

*I can’t tell you how many times I’ve wished for the automatic dryer/clothes dresser-robot-machine-thing from The Jetsons. Can one of y’all get to making that a reality?

*Shaving my legs is a luxury. I’d like to be one of those girls who can keep up on her personal appearance, but by the time I wash my hair and body, I’m exhausted. So I maybe shave once a month. It just requires so much energy, and very concentrated movements of my hands, which are often just too shaky.

*I stopped wearing my hair long because I would get migraines from wearing it piled on my head in a messy bun, and actually styling it took too many spoons. The short bob I sport now also helps hide the fact that my once thick hair is now thinning at an alarming rate. I lose handfuls of hair each day, a common side effect of many RA medications.

*Sometimes I do things even if I know they’ll hurt. Because sometimes I just want to feel normal for a little bit. So I’ll eat those crackers, even though they’ll aggravate my jaw and I’ll be in pain most of the night afterwards. Or I’ll spend time playing on the floor with my doggy, even though I know it’s hard for me to get back up again, and sitting cross-legged is very painful after only a few moments.

*I haven’t been able to fasten my own bra in over two years. I’ve tried even on “good” days, but turning my wrist that way sends shooting pains through my fingers and hand. Not to mention that hooking the clasps requires steady hands that I just don’t have anymore. Most days I wear a sports bra, otherwise I have to have my fiance help me.

What parts of every day life are affected by your chronic illness? Do you have a question about my life? Ask away, and follow along on Twitter!

#ChronicLife -This Is My Life

Last week I saw a tweet from one of my personal heroes, The Hurt Blogger. She was going to be live tweeting 48 hours in her life, in the hopes to better portray how life with a chronic illness, specifically Rheumatoid Arthritis/Autoimmune Arthritis, really is. No holds barred.

I was inspired, and decided I would join her. Today is Rheumatoid Arthritis Awareness Day, after all, and what better way to raise awareness? So today and tomorrow you can find me on Twitter and Instagram, showing my life without any filters.

Britt (The Hurt Blogger) set out some ground rules for her live tweeting, and I will be doing much the same. During this time frame, I will do my best to accurately portray my life- the good, the bad, and the painful. I will be sharing information about my medications, my routine, and my multiple chronic illnesses.

My goal is simple. I think I do so much to not focus on the negative aspects of life, that I don’t really show the “real” me. I don’t like to dwell on the pain, and so maybe y’all don’t realize how near constant it is. Maybe I don’t show the days where I don’t have enough spoons to manage a shower (like today) or just how twisted and swollen my hands and feet can get. So my goal is to show what I hide, as much as possible.

I hope you’ll follow along with me, and get a better picture of my life. Not because I want your sympathy, but because with more understanding we can make strides in awareness. And more awareness can hopefully lead to more research, better treatment, and a cure.

In Pieces

As I sit holding his hand, my heart is shattering into small pieces. The anguish and worry etched into his face cut me so deeply, I’m sure I’ll perish.

But I must remain strong for him.

I tear my gaze from my love’s face to look at the man lying in the bed before us. Even in sleep, his face is grimaced in pain. There are wires and tubes criss-crossing over his body and the machine above his bed is spitting out numbers that mean little to me- they don’t tell me what is wrong with him.

The room is chilly but there is a trickle of sweat down my back. Anxiety pays no mind to the temperature around me.

It seems like ages before they come to tell us what our hearts already knew. He is really sick and they will be admitting him. My love and I follow closely behind as they wheel this man upstairs to the ICU.

This man is my future father-in-law, my fiance’s sole remaining parent. While I come from a large family with multiple tangents, Scotty’s family is small and few. In fact, it’s just him and this man who looks far too fragile right now.

So my heart is in pieces for him, for them, as I watch Scotty try to hold it together and not show his fear.

His father’s health has not been great for a number of years, but he’s always fought back. In fact, this is not the first time we’ve sat at his bedside like this, with our hearts in our throats. But each new time is a reminder that he cannot fight this fight forever, and we mourn the gradual loss of a great man, as his body continues to fail him.

This time we are lucky, his father will heal.

But my heart is still in pieces, already broken for the day when we won’t be so lucky.

Gratitude Heals

Life has been a whirlwind this past week. After a holiday weekend spent working on projects and playing games with a good friend, our lives were upturned when my fiance’s father was hospitalized Tuesday.

Pops is still in the hospital today, and likely will be for at least another week, though we don’t know for sure yet. So while I wait for a call back from his doctor, I’ll share my gratitudes here, and send some positive energy into the universe on his behalf.


*I’m grateful for friends, framily, and loved ones who have been sending prayers and good thoughts for Scotty’s dad.

*I’m grateful for the nurses and staff who have been taking such good care of Pops, and who have answered all our worried calls with calm reassurances.

*I’m grateful for a dear friend who’s come back into our lives, who has been my strength this last week. I’m thankful she was able to spend Saturday with us, and provide some smiles when we needed them the most.

*I’m grateful for our doggy and his snuggles. They might not cure what ails us, but they come pretty darn close.

*I’m grateful for an afternoon at the dog park, watching our doggy play and run. That little bit of fresh air cleared our minds and temporarily eased our hearts. It’s the simple things, sometimes.

*I’m grateful for the Dutch Bros. gift card we received for Christmas which means we’ve been able to treat ourselves to hot tea and coffee while we’ve been driving back and forth from the hospital. The little pick-me-ups have been heavenly.

*I’m grateful for the long-burning holiday candle Cathy gave us for Christmas. The scents of cinnamon and pine are extremely soothing while I sit and wait for the phone to ring.

*I’m grateful we were able to make changes to our phone plans last month, so that we now have the unlimited minutes and texts for all the necessary phone calls and messages. We’d make the calls anyway, but it’s nice to know our bill won’t be astronomical when it comes.

*I’m grateful our car has been able to make the repeated trips to the hospital (it’s a 40 minute trip to where Pops is), despite it desperately needing an oil change and transmission flush, which we can’t exactly afford right now. I’m also thankful for lower gas prices which make it not so damaging to the budget to have to fill up the tank over and over again this month.

*I’m grateful for Scotty’s boss, who understands family comes first. Who made sure Scotty had time off to be at the hospital while Pops was admitted, and even paid him for those hours.

*I’m grateful for all the compassion, love, and strength we’ve received from friends far and wide. For the phone calls, text messages, emails, and tweets. For the smiles and hugs. For the prayers that keep coming, and all the positive energy that is flowing from everyone. It is all felt, and very much appreciated.

*And I’m grateful for my own treatment and doctors, who’ve made it possible for me to be able to be by Scotty’s side through all this. I’m grateful my body has cooperated this past week, and hasn’t punished me too badly for the excess stress and worry. I’m grateful that tomorrow is infusion day, and that I will be receiving some blessed relief so that I can continue to stand by his side and be strong for him.