Tag Archives: spoonie life

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.

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.

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!

Living Better: Interview With My Guru

Dawnie is my personal guru and all around speaker of all the wisdom.She has battled chronic illness for the better part of a decade, and uses the knowledge she’s gained to help others on their paths. She can be found sharing her life at The Dawnie Project.

LBMyGuru

Dawnie recently agreed to let me interview her. It went something like this.

1. You were the first person to introduce me to Christine’s Spoon Theory, and the term spoonie. I distinctly remember that moment, because it changed how I saw myself, and how I could understand my new life. How did you learn of the Spoon Theory and was it a similar experience for you?

When I was first diagnosed I went into shock with anger. It was two and a half years in. I had spent that time trying to fix my pain, only to be told that I had an incurable condition. I spent a few months feeling sorry for myself, pushing everyone away. Then I woke up in the acceptance stage and started looking for a support group. I believe it was the second meeting when someone mentioned the spoon theory. I looked it up online, and had my a-ha moment. That was the day I stopped treating myself like I was sick, and started advocating instead. I no longer wanted people to think of me as broken, but rather to understand why 9 out of 10 times I had to say no but that it was worth asking me for that 1 time I could say yes.

2. You’re one of the few people I know who have found a balance between western and alternative medicine, and a medical team who works with you to maintain this balance. Can you share some tips for people who are looking to incorporate more homeopathic means of care?

The first few years post diagnosis were filled with specialists providing opinions on various treatments to help with issues connected to my condition. When a doctor suggested I join a drug trial not yet approved in the US I stopped. I fired all my specialists and told my family doctor I wanted to try alternative medicine. I got lucky that she agreed to help me.

I found an acupuncturist who worked on my allergies, my pain, and my insomnia. Within a year I went from 9 drugs a day down to 2. I then took a leap of faith and flew to NY to see a homeopathic doctor who started in western medicine and tired of seeing his colleagues push drugs. He walked me through a variety of tests to determine what supplements my body was lacking, what supplements my body could handle, and what foods might boost my immune system without adding to the imbalance. He was expensive ($1500 plus travel) but he might have saved my life.

Homeopathic medicine doesn’t work for everyone, just as western medicine doesn’t. Western medicine failed me, but that’s not the fault of the drugs. My body simply didn’t react as expected. I think anyone with a chronic or incurable condition should research all options for relief. Acupuncture and supplements combined with a specific diet put my condition into remission, but I know a dozen others it didn’t help. If I could offer one piece of advice it would be to knowledge share for research purposes. Oh, and fire any doctor who won’t listen to you with compassion and empathy.

3. We all have days where we pull the covers back up stay in bed. What are your go-to comforts for those yucky days?

Remission doesn’t mean every day is a good one. I still have side effect conditions that are active, and flares now and then. When that happens I like to curl up on the couch with a fuzzy blanket, some hot tea, and whatever movies I’m in the mood for.

4. You’re a frequent traveler, both around the US, as well as a recent trip to Africa. What are your top tips for making a vacation as great as possible, in spite of chronic illness?

I’ve always loved to travel, and for the first few years of my condition I wasn’t able to, because I told myself it was too hard. I let myself take the easy way out and suffered because of it. Eventually I buckled down and made a list of what it would take to make travel work for me again. My packing list expanded to include drugs, supplements, teas, heating pad, slippers, and whatever else I would need to give me the comforts of home. I researched my destination to learn the layout, as well as travel to get there. If flying I made sure I had an aisle seat so I could move around. If driving I looked up rest stop locations so I knew how many miles between. I packed snacks that I might not find on my travels. I did whatever it took to reduce the stress of the unknown. I became an over packer, but it was worth it to be able to go.

5. Something we’ve discussed much here on the blog, as well as in many conversations you and I’ve shared, is the effects stress can have on our symptoms, and possible flares. How do you combat the everyday stress of money, life, family, etc?

Having a chronic incurable condition is going to be stressful, even in remission. That’s life. The best thing you can do for yourself is to stop fighting it. Accept your limitations, decide how you’re going to work around them, how you plan to occasionally test them, and then live your life. You will never be the person you were, because people change with time. Deal with it.

6. Because of you, and friends like you, I’ve been encouraged to chase dreams, in spite of chronic illness. What is something you’ve done since your diagnosis which you never dreamed you’d be able to achieve? What goal are you currently working towards?

I have always wanted to travel to Africa and the Serengeti. After being diagnosed I thought it would be impossible. There were simply too many comforts of home I would have to leave behind. What if I’m in pain there? What if I get sick? What if I stop worrying about what if and start plotting how to make it work?

It took a 20 hour flight to get there, with 6 days in the wild tracking the great migration, and then a 25 hour flight home. Without a doubt I had to let go of comforts of home to make it happen. But it was worth every moment. When you let go of your fear and anxiety you discover a whole new world of possibility. Driving around on bumpy dirt roads in an old jeep wasn’t easy on the body, but then we’d stop twenty feet from a lion resting on the side of the road and it would take your breath away. Suddenly that ache didn’t feel so bad anymore.

My next goal? I haven’t dreamt it yet. Whatever it is, I’ll find a way to make it happen.

 

I can’t thank Dawnie enough for sitting down with me to share her wisdom with all my readers. If you’d like to know more about her and her path, be sure to follow along at The Dawnie Project. 

Gratitude Born From Pain

GratefulMondays

I woke up this morning with the worst headache I’ve had in at least a decade. Fortunately, I have a great fiance, great medical staff, and great spoonie friends who all came together to make sure I could get over the worst of it and still function today.

So here’s some gratitude born out of the pain of this morning.

*I’m grateful for a man who will set aside his own pain to do anything in his power to ease mine.

*I’m grateful for Christina, my nurse, who answers my calls and all of my panicked questions with calm and compassion.

*I’m grateful for my friend Lana, who also has RA, who never gets mad when I text her with random RA questions and whining.

*I’m grateful for a doggy who senses his mama isn’t feeling well, and spends his morning curled up next to me, as quiet and as comforting as can be.

*I’m grateful for plans that are flexible, and friends who understand.

*I’m grateful for a night out with our favorite couple (who are visiting from Canada). For sharing pizza, and hugs, and selfies. For laughs and smiles, and conversations where it feels like they haven’t been gone these last few months.

*I’m grateful for early Christmas that came with fuzzy pajama pants and a slew of presents to go under our tree when it goes up in a few weeks.

*I’m grateful for the medicines that worked this morning so that I could finally open my eyes without wanting to scream. So I could look at a computer screen without wanting to puke.

*I’m grateful for Andrea and the writing group she started on Facebook. It’s kept me motivated while we all participate in #NaBloPoMo. For all the writing prompts and comments. For the shares and support. For the encouragement and belief that together, we can all achieve this goal.

*I’m grateful for a partner who hasn’t given up on me. Who continues to lift me up, no matter all the different setbacks. Who has embraced this new me instead of walking away from such an unpredictable life.

 

What are YOU grateful for this chilly Monday morning?

Top Five Thursday: De-Stressing

I had a really hard time writing today. Which, when you’re posting every day, is something to be expected from time to time. Also, my brain has been pretty bogged down with stress.

One of the biggest battles I face as a spoonie, is reducing stress and stress management. We all know that, while stress does not cause our illnesses, it can exacerbate symptoms and cause flare ups. Stress management is key.

I’ve been working with my therapist and my doctors to learn better coping skills, and find areas in my life where I can cut out potential stressors. Still, life has a way of sneaking up on me every now and again. This week would be one of those times.

And so, I thought instead of just working on me, I would share my top five ways to de-stress, in case life was being mean to anyone else lately.

*Music. I know I say this a lot, but music really is one of my greatest tools. It soothes me while allowing me to sing along and express whatever emotions are clogged up within me. Also, music varies, so there’s always something to fit whatever your mood. Rock is my go-to, but sometimes I can be found crooning along with something soft and slow.

*Distraction. Sometimes it’s scrolling Pinterest, sometimes it’s playing silly games on my phone, sometimes it’s trashy TV. The point is to find something to pull your mind from whatever is stressing you out.

*Writing. Journaling has become a great tool since I started therapy. I used to think that my journals had to be neat and edited, like my writing here. A good friend helped open my eyes to the wonders of scribbling. Now my journaling is just about getting the thoughts that are swirling around my head out onto the paper. And to be honest, there’s a part of me that feels a little better to just doodle and scribble instead of making it all neat.

*Creativity. Coloring or crafting, as long as it involves using my brain for something fun, it counts. Spilling all my mental energy into crafting new cards, scrapbooking, or even photo editing takes all the power away from the stressful thoughts. I can’t be worried about money while I’m coloring in Winnie The Pooh, it just isn’t compatible. Try it sometime.

*Talking. Just like writing, this works to get the thoughts out of my head. Talking them out with someone- a therapist, a friend, a family member, your spouse- can also often help you see a solution where there wasn’t one a moment ago. And even if you don’t need any answers, but just to vent, talking is still a great tool.

These are not my only tools, but they’re the five which help me the most. What tools do you use to combat stress and worry?

Cooking With Spoonies: Homemade Mac N Cheese

I know it’s been forever since I’ve shared a recipe with y’all. So what better time than when I’m posting every day for #NaBloPoMo?

I made this awesomeness for dinner last night, and Scotty loved it. Actually, it was his suggestion that I share this with you. Because he’s awesome.

If you’re on a restrictive diet, this may not be for you. But if you’re having a rough day, this is relatively simple. And it makes a ton, so it’s good for those upcoming holiday potlucks. Because, seriously, who doesn’t like mac n cheese?

(I also made cream cheese frosted brownies for dessert because comfort food.)

Homemade Mac N Cheese (Shortcut Style!)

I boiled a one pound package of little shells. (Yes, I realize the name implies that it should be made with elbow macaroni, but I prefer little shells.) I salted the water heavily because you ALWAYS should salt your pasta water. I cooked the pasta just this side of al dente. You don’t want to cook the pasta too long, because it’ll become mushy when it bakes later.

Once I drained the pasta, I stirred in one jar of Prego Double Cheddar Cheese sauce and one regular sized can of Campbell’s Cheddar Cheese condensed soup, with no added water.

I then spread half of the pasta mixture in a 13×9 glass baking dish that I had sprayed with non-stick cooking spray. I covered that layer with about 3/4 cup shredded cheddar cheese. Then I spread the rest of the pasta mixture, and covered that with 3/4 cup shredded Monterrey jack cheese. (We like things cheesy around here.)

I covered the pan with foil and baked it at 350 F for 20 minutes. I then removed the foil, and baked it for another 10-15 minutes until it’s bubbling and the cheese is fully melted.

We had just this for dinner last night, but plan to serve the leftovers with BBQ pulled pork sammies later this week. Obviously you could make so many adjustments: You could add bacon, or ham. You could switch the style of pasta or the kinds of cheese. You could make your own cheese sauce rather than using store-bought.

I did it this way because it was easiest for my hands and my energy levels. I imagine there are some moms out there who wouldn’t mind a “homemade” mac n cheese that is as easy as what comes in the box, but sooooo much yummier, and makes a great big amount.

I hope you all enjoy this as much as Scotty and I did! How do YOU like your mac n cheese?

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.