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.
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!
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.
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.
My health has been having some ups and downs and even some sideways. The holidays came, conquered, and left. Once again we find ourselves in January where money is a little more than tight, the weather is a little colder than chilly, and we’re all pretty burnt out.
I find myself stepping back to evaluate where my heart is. What projects have a I committed to, and which do I really WANT to do? How do I balance what I want to do with what I NEED to do? How do I take care of myself and others?
Yesterday, after a particularly emotional doctor’s appointment, I came home and cried. I curled up with my doggy and tried to shut out the world. Except the world didn’t want to stay shut out. There were emails to answer and phone calls coming in and…
So this morning, I didn’t check my email, I didn’t answer my phone. I loaded up my doggy into my friend’s truck, and we took our dogs to the dogpark. We stood bundled up, chatting with other dog owners as our dogs all sniffed each other. I walked around with our little Toddy while he sniffed each and every fence post. I threw the squeaky ball for the dogs who would chase it. And I watched my shy little guy chase dogs three times his size.
I got a little muddy, more than a little chilled, and am definitely tired. But the dog slobber made me smile, and as I watch my Toddy nap on the couch, I realize my mind is clear for the first time in weeks.
After spending New Year’s Eve playing cards and games with my fiance and one of our good friends while our dogs played and hid from the fireworks, I spent a chunk of New Year’s Day in the ER with some odd symptoms. Muscle tremors, shooting pains, and random numbness throughout my left arm/elbow/hand. Turns out I’m fighting a harder RA flare than I knew, and this was just another manifestation of that. They fitted me with a sling to keep the arm elevated and told me to go home, take my pain meds and…REST.
Anyone else hate being told to rest all the time? No? Just me?
Anywho, this morning I was getting caught up on blogging and showing some of my blogger peeps some love, and I found this on Tamara’s site. And I thought, “Yes, I need to do this!” So here you go, loves, my 2014 in review, and some hopes for 2015.
What did you do in 2014 that you’d never done before?
Got our adorable doggy, the first pet Scotty and I’ve had together.
I started Remicade infusions for RA treatment. I’ve never had any sort of infusion before.
Did you keep your new years’ resolutions, and will you make more for next year?
I did, and I will! For 2015, I want to focus on living better. I want to spread kindness and joy and do my part to make the world a better place.
Did anyone close to you give birth?
A few of my dear friends blessed us with babies this year. Rebecca, Crys, and Fallah all had adorable bundles of joy ❤
Did anyone close to you die?
Not anyone I know personally, but the loss of Robin Williams touched me deeply. I grew up with him, and it breaks my heart to know the world is missing his genius.
What countries did you visit?
Sadly, none. We’re hoping to visit Canada later this year.
What would you like to have in 2015 that you lacked in 2014?
A blender. A yard for our doggy to run and play.
What date from 2014 will remain etched upon your memory?
I don’t have a specific date, just little snippets throughout the year that make me smile. The look of joy on my fiance’s face as he played his music again. My son and fiance exploring the space museum together.
My doggy running through the tall grass at the dog park. Game nights with my fiance. Nights at Denny’s with Kristen and Seth. Civil War on the big screen. Evenings with Cathy.
What was your biggest achievement of the year?
Following my dream of being a writer. It involved more than just sharing my words here with you. I put myself out there more and faced my fear of rejection. I hope to continue this in 2015 and maybe finally finish a book.
What was your biggest failure?
This question really stumped me. I think as long as you continue to learn from your mistakes, nothing is a failure. As for me, I’m still learning.
Did you suffer illness or injury?
Still rocking the battle against my autoimmune disorders. I was also diagnosed with TMJ, and am awaiting an appointment with a oral maxi-facial specialist to determine our treatment plan. I also had a bout with chemical poisoning. Joy.
What was the best thing you bought?
I honestly can’t think of anything right now. Does the cheesy popcorn I’m calling my lunch count?
Whose behavior merited celebration?
My fiance, who continues to be by side and hold my hand as I walk this path.
Where did most of your money go?
What did you get really, really, really excited about?
Time with my son.
Planning our wedding. Making a new friend. A visit from Kristen and Seth.
What song will always remind you of 2014?
Foo Fighters Something From Nothing
Compared to this time last year, are you:
Happier or sadder? Happier Thinner or fatter? Thinner, though I still have a ways to go. Richer or poorer? About the same, I guess. Scotty did get a raise, but those bills keep coming and they’ve just increased our rent, so…
What do you wish you’d done more of?
Living. Chasing dreams. Crafting. Learning new things.
What do you wish you’d done less of?
Hurting. Being stressed and anxious.
Did you fall in love in 2013?
I fall in love with my fiance every day. I fell in love with our doggy when we first met him and knew he needed to come live with us.
How many one-night stands?
None. Or 365 with the same man, however you want to look at it.
Who were your best friends?
All of my friends are best. Kristen and Seth. Nolan and Courtney. All my girls, the sisters of my heart. Kerry. Cathy ❤
What thing did you do that was meaningful to others?
I continued to share my stories. The crew helped me launch the Spoons 4 Spoonies website so we can continue to offer support to those battling chronic illness.
What were your favorite TV programs?
Once Upon A Time. Just about anything true crime related. Sonic Highways.
Do you hate anyone now that you didn’t hate this time last year?
I try not to hate anyone, it’s so bad for your own well-being. But there are a few people I wouldn’t mind never seeing or hearing about again.
What was the best book you read in 2014?
Written In My Own Heart’s Blood by Diana Gabaldon, the latest book in the Outlander series.
What was your greatest musical discovery?
Sonic Highways by the Foo Fighters. I loved getting to watch how each song came together on their HBO series, and then feel in love with their songs. I’ve always been a FF fan, but this made me love them more and in a new way.
What did you want and get?
A lap desk. A mellow and laid back Thanksgiving holiday. A new phone with a better camera (Thank goodness for Verizon’s free phone offer!). Time with my sisters.
What did you want but did NOT get?
Time ALONE with my sisters. A money tree. A new body.
What was your favorite film of this year?
Uh… I can’t remember seeing many movies this year… Sad story.
What did you do on your birthday, and how old were you?
I turned 32 and spent the day with my son and my fiance and some of our dear friends. We went bowling, which was something I didn’t think I could do with my RA hands, but I did it and it was awesome! We also had pizza from my favorite place, and cupcakes, which makes everything awesome.
What one thing would have made your year immeasurably more satisfying?
What kept you sane?
My writing. Therapy. My fiance. Our dog. All of our lovely friends who popped in to keep me trucking along ❤
Which celebrity/public figure did you fancy the most?
Sam Heughan, the guy who plays Jamie Fraser in the TV version of Outlander.
Colin O’Donoghue aka Captain Hook
What political issue stirred you the most?
I was in an uproar over a few things, others just broke my heart. I’ll say this: I stand for equality for all, and for a safer world for our children.
Who did you miss?
My grandmother. My brother. Misty. My daughter. I always miss my son when he’s not here with us. All of my friends who live near and far, whom I never get to see often enough.
Who was the best new person you met this year?
Kerry! She’s become a dear friend and a lovely support system. Also, with whom else can I sit and reminisce about the 80s?
Tell us a valuable life lesson you learned in 2014.
Sometimes you have to just let things go. Accept that you need to put yourself first, and set boundaries, even if the things you have to let go are people you love. You can’t help others at the detriment of yourself.
Quote that sums up your year:
Thank you all for following along this past year, and for joining me for this little walk down memory lane. Here’s wishing 2015 is full of all the best for all of us! Happy New Year!
Today I went back to that post and, shockingly, I realized I had actually worked on these goals all year, even though I thought I had forgotten about them.
Maybe I didn’t do something each day to make myself feel better, but I did make it a regular practice. I dressed up more often, and found some makeup my skin could tolerate. I broke my jewelry out of retirement and tried a few new hairstyles. I finally settled again on an A-line bob which requires pretty minimal effort to look good. Sure, there were still jammie days, but there were also more days where I looked like my old self. Not too shabby there.
While I didn’t set a strict schedule for myself, I did settle into a nice routine to make the best use of my time and energy. I also created a planner for myself, which helped keep me organized when it came to doctors appointments, as well as scheduling blog posts and brainstorming ideas. This was a great change for me, and I’ll be using my planner in 2015 as well.
I think I made a lot of strides this year in living life while still managing my health. I started therapy, which is helping me work through many of my mental health triggers, as well as helping me find new coping tools. I’ve been better about practicing self-care and putting myself first. I cut out a lot of what was causing stress and chaos in our lives, and streamlined those things I couldn’t cut out completely. I learned how to set boundaries, which has been a huge thing for me. Mostly I’ve learned how to take care of me, all of me, and how taking care of me can help me to live a better life, even with chronic illness.
And last, but certainly not least, I LIVED. I made new friends and reconnected with old friends. I made memories with my son and my fiance. I tried things I wasn’t sure my body could handle, and tested my limits.
I’m proud of all I did this year. As much as 2014 was rough, and my health took some turns, I still accomplished a great deal and I’m very proud of that. I’m looking forward to 2015 and all it has to offer. I know it’ll be great because it will include our wedding, a visit from one of my dearest loves, and more memories with my son.
I hope you all will continue to follow along on this journey with me. I plan on continuing the Living Better series, as well as starting a newsletter. I’ll also share sneak peeks at the wedding planning here, and I’m sure there will be some pics of the big day. There will be more photos and recipes, life tips and stories about my journey and treatment. There will be more guest posts, and I’ll be visiting a few friends myself.
What were your goals for 2014? Did you meet them? What would you like to see happen here in 2015?
I know I’ve been pretty quiet this month. My family decided that since my fiance and I couldn’t travel to them for the holidays, they would come here. Which means I’ve spent much of the last month swamped with the regular holiday stuff and then an added side of stress and anxiety. Add in a big dose of my health being wonky, and it’s been busy to say the least.
I had a little mini meltdown last week when it all became too much. After I vented, cried, and snotted all over the place, I was reminded of all the good I have in my life. So here’s a great big holiday dose of gratitude for you, just in case you’ve got a little too much yuck on your plate, too.
*I’m grateful for friends who let me send them epically long emails full of my drama. I’m equally grateful for their love and support, and all the wonderful advice they offer.
*I’m grateful for a fiance who, when I’m feeling swamped, tells me to make him a list and he’ll make sure it all gets done. And you know what? I’m grateful for my awesome fiance who made sure that list got done. Every. Single. Thing.
*I’m grateful for friends who send cookies, and for the same friends who don’t mind their cookies being a little late while I battled the crud.
*I’m grateful for Cathy and all her love. For the new sheets and heated mattress pad, which have turned my bed into a haven for my sore body. For her working through her own pain to give me a mini makeover every month so I can look good, even when I don’t always feel it. For her unwavering support and all the very best hugs.
*I’m grateful for the roof over my head, the food in my fridge, for a doggy who loves me and snuggles me, and for family who want to be with me (even if it does cause a bit of anxiety).
*I’m grateful for the blogger friends I’ve made this year, for all the help and advice they’ve given, and for the growth in my writing. I’m grateful for exciting new opportunities in the new year.
And last, but never least, I’m thankful for you, my dear readers. For sticking by me when the writing is thin, for offering support when things are rough, and for helping me celebrate the good times. I’m looking forward to all the things we’ll share together in 2015. Until then, I hope you all have a very Merry Christmas.
Tuesday started with Scotty being sent home from work sick. The week continued with him also missing Wednesday and Thursday. We bundled up in jammies, downed the cold meds every 4-6 hours, and napped sporadically while attempting to hack up one or both of our lungs.
So it seemed like a great time to try a new soup recipe. Obviously.
I found this gem on Pinterest and had been meaning to try it. When the time came, I realized I had only some of the ingredients, and other bits that I could substitute in. So here’s what I did.
For the chicken, I used some leftover taco chicken I had from earlier in the week. It was about 4 cups shredded, as well as a cup of leftover cooking liquid.
I only had a small can of green enchilada sauce, so I used that, the cooking liquid, and a single can of chicken broth for the base. I added all this and the chicken to my crockpot and cooked it on low for about 3 hours.
At that point, I bumped it up to high and added 1 package of cream cheese, cubed. I allowed this to cook for about an hour, then I added 2 cups of instant rice and 2 cups of frozen corn. (I’ll interject that the rice continues to puff up, so in the future, I will only add 1 cup. Otherwise it becomes more a dip and less a soup. Lessons learned.)
That cooked for about another 30 minutes and viola! Dinner is served.
We topped ours with a little shredded cheddar cheese and a dollop of sour cream, and served it with our favorite tortilla chips. It was warm, creamy, and just a tad spicy. The perfect meal for a sick day.
I hope you’ll give either version of this recipe a try. It’s crazy easy and absolutely a great meal for these cold, wintery nights.
This past month has seemed like one thing after another. I’ve done my best to stay positive and just keep rolling with it, but at some point, we all break. I’ve kept much of what’s going on quiet for two main reasons. One- we still have more questions than answers. Two- I really didn’t want to be a downer. I wanted this holiday season to be filled with light and joy. And so I just kept plugging away, decorating our home and making plans.
Then this cold came.
I woke up Saturday feeling mostly fine. I had a little stuffiness but figured it was due to the dry air, as it’s been cold and we’ve had the heat turned up. I went with Scotty to visit his dad that afternoon, and then went out that night to watch Scotty play. By the end of the night, I was sneezing away and felt like my head wanted to explode. Last night, I knew it wasn’t just allergies or dry air, I could hear the cough rattling in my chest.
And that’s when I wanted to break down. Because I’m tired of being sick. I’m tired of cancelling plans and having to reschedule and back out of promises. I’m tired of doctor appointments and tests and more medicine. I’m pissed that once again I have to push back my Remicade infusion, leaving my body open to further pain and complications.
Because it isn’t just about the cold.
It’s the TMJ diagnosis and finding out there’s joint erosion in my jaw. That I may need surgery on my mouth. That there are days where talking is painful. It’s the bouts of temporary paralysis while dreaming and/or waking up that terrify me. It’s the overwhelming signs pointing that stress is taking its toll on me, and the overwhelming amounts of stress that keep pouring in. It’s the nerve pain that shoots down my legs. It’s the sleeping problems, the headaches, the soft food only diet, and oh-look-mother-nature-decided-to-visit-this-week-as-well.
It’s the feeling that it’s always ONE MORE THING with me.
It’s the worry I see on my fiance’s face, even as he’s trying to be so strong for me.
Today I go in for an MRI of my brain and I’m waiting to hear back on when I can get scheduled for the EEG the doctor ordered. I’ve cleared my calendar for the week and am bundled up with hot tea, Mucinex, tissues, my heating pad, and Austin Powers. I’m doing the best I can to practice self-care, while working to let go of the negative and focus on the happy.
I appreciate all of your comments, love, and support. I will do my best to keep writing and sharing my path. But if I miss a day here and there, or don’t get to my email right away, know that I’m taking care of me- one thing at a time.