Tag Archives: RA

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.

But…

BUT.

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.

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#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.

Cooking With Spoonies: Chicken Enchilada Soup

It’s been a week of fighting colds here.

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.

CookingWithSpoonies

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.

ChickenEnchiladaSoup

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.

Oh! And while I was attempting to hack up a lung, my first guest article for RheumatoidArthritis.com went live. Pop on over and see my tips for the loved ones and caregivers of an RA patient.

There’s Always One More Thing

It would appear I’ve picked up yet another cold.

Like I needed another thing on my plate.

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.

 

Small Victories Sunday: What A Week

The lovely Miss Tanya from Mom’s Small Victories has been completing #NaBloPoMo along side myself and others this month. She’s been a great inspiration in our little Facebook writing group, and though I was aware of her site before, it’s been wonderful getting to know her a bit better, and connecting with a fellow RA fighter.

On Sundays, Tanya hosts a link up to share our victories and inspiring posts to help others live the very best lives. All month I’ve been wanting to link up, but one thing or another prevented me. Mostly, my silly head telling me I didn’t have any victories. Pfft.

Small Victories LinkUp

This week was a whirlwind in my house, and though there was much stress and pain, I ended it on a wonderful high note. And so that is my victory.

Last night I dressed up, did my makeup and hair, and went out to watch my fiance play. Sure, I’m still battling these awful headaches with the TMJ, and yeah, at home with my heating pad was probably where I should have been. But I adore watching him play, and I knew my soul needed to see something other than my own four walls.

And you know what? I got the best compliment last night.

“You look like the old Tia again.”

I know that might seem silly, or possibly even insulting, to some of you. But it meant a lot to me. I don’t *want* to look sick. I don’t want to look like the pain that is ravaging my body. Sure, it might make some social situations different if people could see what I go through, but I don’t want their pity. And that’s what it would be, if people could see.

Last night was wonderful for so many reasons. Yes, I’m paying for it today. But for a brief moment in time, I was the old me again, and it felt good. It felt really good. And now I know, it is possible to meld these two people together, to have the old me and this new me inhabit the same body, and to become the very best me. Someone who can celebrate life, even at a dark moment.

Someone I adore dearly is also out there being awesome despite chronic illness. If you missed it yesterday, be sure to check out my interview with Dawnie. She shares how she’s living a life full of victories, no matter what.

What is YOUR victory this week? Link up with us, or share it in the comments. Let’s celebrate together, I’ll bring the dessert!

Truthful Tuesday: I’m Hurting

It’s been awhile since I’ve shared some truths. Today the emotions are still running high, so I thought this would be a good way to process some of them.

*The doctor says I have TMJ, that it is related to RA, and is likely caused by my poor stress management.

*While I’ve improved in some areas in therapy, stress management is still something with which I’m struggling.

*What I really want is someone to handle these things for me.

*I not only have a hard time telling people “No,” I also have an equally difficult time saying “I can’t do this any longer” when an obligation or responsibility becomes too much for me.

*Right now, the emotional pain of this diagnosis and the surrounding issues are as painful as the TMJ.

*The pain is impacting my ability to eat the food I want, and today it hurts to talk. Or sing.

*My doggy asking to play will never not bring a smile to my face, no matter how much I hurt.

*My doggy waits until I’m in the middle of a post, and knee deep in the writing mojo before he’s ready to play. And he will not take no for an answer.

*Even while things have been rough these few weeks, I’ve been blessed. I’m lucky to have friends who do so much to enrich my life.

*I will overcome this hurdle, just as I’ve overcome everything up to this point. I may need a few days to process things, but I will prevail. And I will smile again.

Come Share The Light

Every description of a Leo personality I’ve ever read says Leo’s love being the center of attention, love the limelight, love being leaders. And for most of my life I have adamantly denied that these descriptions applied to me.

I don’t like to have the light shone on me. (Says the woman who shares her life with the interwebs. Ahem.) But I really DON’T. I’d much rather showcase those around me than to take the light for myself. I get embarrassed and bashful when I’m the center of attention. It’s probably very closely tied with my stage fright, but that’s a topic for my therapist to dissect.

Anyhow, when I started this blog, and started sharing my journey, my stories, with the interwebs, it was as much for me as for anything. It was a way of journaling and processing all that was happening in my life. And if it helped someone along the way, then awesome. I soon realized it was cathartic for me to write my stories, and rewarding to know someone found solace or comfort in my words. I shared more of my path until I realized I had turned some corner and was not only a writer, but an advocate.

Even then, I shied away from praise and the limelight. I wasn’t doing anything special, I was just writing about my life. So yes, when others tell me how strong or brave I am, I still blush and babble about how I’m just me.

Because that’s how I see it. I’m just me.

I’m not strong or brave or courageous. I’m just me, living this life the only way I know how. Because the other option? That’s giving up. And that is NOT an option for me. So it’s not brave that I get out of bed every day to battle, it’s just me being stubborn.

Fortunately, I have awesome friends who remind me that being stubborn is actually a form of bravery (or stupidity, sometimes). Friends who constantly lift me up, who don’t let me brush off the compliments and well-meant platitudes. Because they know it’s important to recognize and celebrate every good thing.

I might just be me, but maybe I’m a brave me. I’m certainly stronger than I ever thought I could be, and stronger than I often give myself credit for. If it’s courageous to drag this cranky body out of bed each day, well heck…I guess I’ll go stand in line with the cowardly lion for my pretty badge.

I say all that to tell you this:

You are stronger than you give yourself credit for. You are brave and courageous. Did you wake up and draw breath this morning? Then you are a rockstar and you deserve some of that limelight. You might feel like me, like you just don’t have any option, but that doesn’t make it any less noteworthy.

It takes tremendous determination to stare a life of chronic pain and illness in the face and say, “I will keep living, despite…” To get up in the morning and LIVE despite the pain and fatigue. To carve out a path to your dreams despite the limitations and roadblocks.

It is an act of great strength to be YOU, in spite of all that would knock you down.

So this is me, asking you to join me in the limelight. Today we say yes, we are strong. We are brave. We are living, in spite of, and we’re doing it better than we ever thought we could.

 

What If Your Pain Were Visible?

What if your invisible illness could be made visible?

What if you could wear something that brought attention to the pain you’re feeling, the pain no one can see?

What would that item look like? Would it look something like this?

Invisible---Girls2

This design is the brainchild of professional kettlebell athlete and fitness coach Megan Densmore, in conjunction with Labs* by One Squat Shop. The shirt is a custom print launched to support the production of Invisible, “a film challenging the way society treats and views chronic invisible illness.”

“Over my years of living with Fibromyalgia, I connected with others dealing with similar challenges and became interested in how these health issues showed up in our personal relationships and social lives.” -Megan

Though Megan is lucky enough to currently be living without symptoms, she says this has only reinforced her motivation for this project. She’s been able to experience the world both with and without symptoms, and seen the impact Fibro has had on hers, and others, lives and relationships.

Invisible is a documentary featuring woman who are under 40, who look healthy but are managing serious health problems with daily symptoms. These woman will be sharing about how, since their symptoms can’t be seen with the naked eye, they struggle to maintain relationships, to be social, and continue working in the face of doubt and judgement from others.

The t-shirt/tank design was inspired by the invisibility of conditions like Fibromyalgia, RA, and Lupus. The design is an answer to the question: “What if we could show everyone how we feel? What if they could see inside?” If you’re a movie buff, you might also notice the design is inspired by Nigel Tufnel’s green skeleton shirt in This is Spinal Tap.

So how can you get one of these awesome shirts?

Both the t-shirt and tank are pre-order and must have 15 orders to print. They are $25 USD plus $4.99 S/H. All the proceeds from the sales will go directly to the production of Invisible. We have to hurry, though, as the sale ends tomorrow, October 31, 2014 at midnight.

Below I’ve included a preview of the film. They are still looking for women to share their stories, so if you’d like to be involved please contact them at invisiblefilmteam@gmail.com and tell them I sent you.

I do hope you’ll join me in supporting the production of this film. It’s time we made our voices heard, and time we brought awareness and visibility to the pain we struggle with each day. I’ll be wearing my new tank soon, will you?

 

**Full Disclosure: I was approached by Labs* to check out this project, and lend it my voice if I was so inclined. I was not compensated in any way for writing this post. Clicking on the above affiliate links will enter me into a contest to win a free t-shirt or tank, as well as one to giveaway here. I fully believe this project is a worthy cause, and something that could benefit my readers. I would not share it here otherwise.

I’m Grateful For Negativity

When I woke up this morning, I wasn’t feeling very grateful.

GratefulMondays

I’m currently fighting off a nasty sinus infection that resulted from the chemical poisoning a few weeks back. The antibiotics are wreaking havoc on my body, and we had to push back my next infusion, so I’m flaring on top of everything. Clearly, I’m loving life right now.

But then something on Facebook stopped me in my whiny tracks. And I realized something very powerful.

I’m grateful for all the nay-sayers. For everyone who’s ever told me I couldn’t do something. For all the people that told I’m not strong enough, or pretty enough, or thin enough, or just…ENOUGH.

For the doctors who told me it was all in my head, and the ones who told me I’d succumb to this disease and be in a wheelchair by now. For the nurses who were rude and treated me like a hassle.

For the “friends” who left when things got rough, and the people who never gave me a chance.

I’m grateful for all of this negativity, because I chose to thrive in spite of it all.

I am doing it. I’m living. I’m writing. I’m DOING. I’m strong, and pretty, and my man happens to like my curves, so there! I am more than enough.

It’s not all in my head, and I haven’t allowed RA to overtake me. While I might need a cane sometimes, I’m not in a wheelchair yet, and I have no plans for one.

And those friends who left? They made room for the people I really needed in my life. They opened the doors for my framily to walk through, and so I’m grateful for them.

I’m grateful for everyone, everything, that has made my life challenging. Because it all has made me who I am. And who I am is someone who’s not giving up.

Always, I Keep Fighting

Sometimes I wake up and everything hurts.

Sometimes the pain is too much and I want to give up.

Sometimes I want to give the reins over to someone else. Let them worry about all the new symptoms, the pain levels, and whether or not I’m absorbing all my medications and vitamins.

Sometimes I want to close my eyes and just forget it all. Forget that I’m sick, forget that I have responsibilities and obligations, forget that I have to keep fighting.

Sometimes I don’t want to fight. I don’t want to research new treatments and better diets. I don’t want to push through the pain just to manage a few minutes of exercise. I don’t want to go to yet another doctor’s appointment, I don’t want to give them more blood, I don’t want to pee in yet another cup.

But sometimes…

Sometimes I wake up and there is a doggy kissing my swollen hands.

Sometimes the pain is just bearable.

Sometimes my fiance rubs my back and kisses my forehead and I know no matter what, everything will work out.

Sometimes I close my eyes and can let the stress go while my favorite song plays in the background.

Sometimes I get an email, a phone call, a text that reminds me I have a purpose, not an obligation.

And that’s why I keep fighting. For my fiance and our doggy, for my son. For all the people who’s lives I’ve touched and who’ve touched mine. For all the others out there like me, who have days where they wonder why they bother.

For me and my dreams, I keep fighting.