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.
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!
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.
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.
Because it’s always easier to bear the pain ourselves, than to watch those we love suffer.
I always say I have it easy being the sick one. While it’s no fun being in pain, and dealing with chronic illness, I would take this any day over watching Scotty suffer. He often has the raw end of the deal, having to hold my hand, without being able to help me feel better.
If it were you, which side of the bargain would you choose?
The holidays are steadily approaching, and while I know it’s not quite Thanksgiving yet, some of us may be trying to get a jump start on Christmas shopping. If you’re a spoonie, pass this post along to your family and friends with your favorite choices highlighted. If you love a spoonie, I created this list to help you know what kinds of things will cheer them up AND help them to find a bit of comfort.
Whether it’s a nifty one that has pockets to also warm your hands, or if it’s homemade, a heating pad is a spoonie’s best friend. Pinterest has many tutorials on how to make your own, so if you’re feeling crafty, you’re set. If you’re not so crafty, standard electric heating pads can be found at any of your major home retailers.
The flip side of needing heat for aching muscles, spoonies also rely on ice packs for swollen joints. I personally like the first aid style ones that can be reused over and over. They’re not terribly expensive, and can offer much relief to those who suffer with chronic pain.
Or really, fuzzy anything. Socks, a robe, blankets, pajamas. Soft, warm fabric is a wonder, especially this time of year. If you are purchasing clothing, please keep in mind particular limitations that may exist, ie swollen fingers and such. So avoid zippers and buttons, and steer more towards loose clothing. If you’re not sure about something, stick to the safer bets of blankets and socks. Everyone loves a fuzzy blanket.
Many who battle chronic illness feel isolated, especially during the colder months when their outings are more limited due to the weather and the increased germs (yay flu season). Gifting them with entertainment options is a great idea, and there are many choices. Movies, puzzle books, or a gift subscription to a streaming service like Netflix or Hulu are all wonderful choices.
Some might think this is only for women, but I beg to differ. Everyone likes to feel pampered, and when your body is often in pain, anything to help you feel good is pampering. Candles, body wash, lotions- They can all make a person feel better about themselves, and help to boost their spirits. A note of caution: please check with your loved one about scent sensitivities. If you’re unsure, go with unscented just to be safe.
I happen to prefer chocolate, but I have friends who prefer cookies or cupcakes. This can be a hard category if you don’t know your spoonie very well, as often spoonies have certain diet restrictions. If you’re not sure, or just want to play it safe, look into gift cards for places you know they like, or ones that have a wide variety of options, so your loved one will be sure to find something they like and can have without risking a flare.
You might think this is a cop-out, but I’m here to tell you this is the greatest gift I can receive. A simple card in the mail or a phone call can brighten my day and costs very little. Want something tangible to give? Make coupons! Little IOUs that your loved one can cash in when they’re feeling up to it. Offers can include taking them shopping one afternoon, helping them with chores, a movie date, or a home-cooked meal from you. These might not seem like much to you, but can be the greatest gift to your loved one.
I hope this list has helped you choose some gifts for the spoonies in your life. Over the last three years with RA, I’ve received all of these at one time or another, and I can promise you that they warmed my heart more than words can say.
What would YOU add to this list? What is on your wishlist to help you live better?
I recently saw an article on Facebook titled something along the lines of, “20 Questions You Should Ask Your Partner Before Agreeing To Marry Them.” Since I’ve already agreed to marry Scotty, it seemed a little superfluous to start asking him these questions now, and most of them I already knew the answer to. Mostly because we talked a lot in those early days of dating, and also because I like to be nosy.
Anyhow, it got me to thinking, and I asked Scotty if he’d be willing to interview me for this week’s round of #AskAwayFriday. Shockingly, he agreed. (I was shocked because he’s had a crazy long week at work and tons of stress. The last thing he needs is another project. And yet, I gave him one. Aren’t I sweet?)
So here you have it, the ten questions Scotty just had to know about me. Who wants to lay bets on whether he’ll still want to marry me after he reads my answers?
1. What is your biggest pet peeve?
Oy. I actually have a couple that annoy me equally, but if I had to narrow it down, I would say: People who smack their food while talking. And yes, I am aware your father does this. And yes, he is aware it annoys me. And yes, I know that’s why he still does it.
First, I loved how Thomas answered this one, because I, too, am struck by Tracie’s free-writing about seemingly innocuous things. Second, it’s really hard for me to choose. If they were trying to get to know me, Just One…But So Much More, Who I Am, or any of the Ask Away Friday posts are a great start.
3. What do you consider the best thing (fact/life lesson/moment) that your son has shared with you?
Ooh, breaking out the big guns. Especially since you know how awesome this kiddo is. I’d have to say last summer when he was listening to Linkin Park, and was making connections with their lyrics to the issues currently facing our world, like equality and gun control. For him to have such insight at such a young age…I was blown away. And hopeful. Hopeful that he’ll continue to be such a deep and free thinker, and that he’ll someday use that mind to help change the world.
4. Board games or video games?
While I do enjoy Mario Kart and other games on the Wii U with you, I really prefer board games or even card games. They remind me of my childhood, and of spending time with my grandmother. Also, I’m fairly evenly matched against you when technology isn’t involved 😉
5. What is your favorite holiday, and why?
I love to celebrate, so I really love all holidays. Probably New Year’s is my favorite, though. I love the idea of starting anew, and getting a fresh start. Yes, I probably have made and broken tons of resolutions, but…it’s more about the excitement and the infectious feeling that suddenly anything is possible once again.
6. You have 24 hours to show a friend around our great state of Oregon. If sleep wasn’t required and money were no object, where would you take your friend?
Hrms. Well, it kinda depends on the friend, now doesn’t it? Certain friends have different interests, and Oregon has a little of something to offer everyone. But some basics I think everyone should see:
7. You have been fighting invisible illnesses for some time now, starting with your diagnosis of RA almost three years ago. What do you know now that you wish you had known then?
I wish I had known what a huge and wonderful support system the online spoonie community is. It took me somewhere around six to nine months to stumble across the first chronic illness forums, and (as you may remember) those were months spent suffering without much hope. I also wish I had known that I could question my doctors, request second opinions, and do my own research. I went so blindly in the beginning, and some of those choices have caused damage that cannot be repaired.
8. If someone made a movie about your life, who would you want to play you? And who would have supporting roles?
I would love for Melissa McCarthy to play me. I adore her sense of humor, and I think we kinda resemble one another (she says humbly). As for supporting roles, I think Seth Rogan would be a good you. He’s funny and quirky, which are two things I love about you. Then we could cast Jonah Hill as Seth! And how about Christina Hendricks as Kristen, but mostly because of that gorgeous red hair. And Jerry Stiller could play your dad :p
9. You sang in school choir when you were growing up. If you could sing like any particular vocalist, who and why?
When I was younger, I dreamed of being the next Mariah or Whitney. Now though? I would love to be able to sing and write like Adele. In my grandest dreams, I can sing like Adele and I have a band where I do covers of all my favorite rock songs, in ballad form. Because I’m quirky like that.
10. Your love for Linkin Park is well known. Were you a fan of them before seeing them live in concert, or afterward?
I was a fan of them from the moment I saw them on one of the award shows in 2000, performing One Step Closer. I bought Hybrid Theory and those are the songs I hummed to my newborn child as I rocked him to sleep. I never looked back, either. I’ve loved every album they’ve put out, and seeing them live for my 25th birthday was one of the greatest gifts ever. I would love to see them again, and to get to take you and the kiddo.
Well, Scotty says he’ll still marry me, despite some of my answers :p So yay! Hopefully y’all enjoyed this take on Ask Away Friday. If you’d like to swap questions with me, shoot me an email at email@example.com or check out the Facebook group. Scotty and I are off to enjoy a quiet weekend at home, hopefully curled up with a funny movie and some boardgames 🙂
Grocery day always wipes me out, and I’ve been nursing a tender Achilles’ tendon on my right ankle, so by the second store, I was ready to break down and use a motorized cart. Except they didn’t have any available. So I leaned heavily on the cart as I limped my way through the store. By checkout, I was toast.
I don’t know if it’s this way for anyone else, but as my pain increases, all my defenses crumble. That shield I hold up to keep out the judging stares? Yeah, it becomes dust as the pain and exhaustion overwhelm me. Scotty knows this, and so he took me home to regroup after that second store, even though we had a few more stops to make.
I rested up, re-sorted my coupons and shopping list, and then we headed back out.
I should have known better.
But I’m stubborn, and wanted to complete our list instead of pushing it off to another day.
Now Walmart isn’t generally known for its warm and fuzzy clientele or staff, so I really shouldn’t have been surprised. But I like to keep thinking there’s a bit of good left in the world, and so I was surprised.
As I limped into the store, I gasped in relief to see there was one motorized cart left. And then I crumpled as another woman approached the cart. What ensued was nothing short of shocking. She offered for me to take the cart, but then proceeded to act like I was stealing right from under her. Scotty’s hackles were raised as he squared off with the woman, trying to explain my condition and pleading for understanding. The woman stormed off after yelling at me, “I have problems, too!”
I sunk into the seat and held back the tears.
Only to turn the corner and see the Walmart greeter (who had surely witnessed everything) glaring at me with contempt.
Y’all, I nearly broke right there.
I wish I could have screamed at everyone watching, “I don’t want to be here! I don’t want to NEED this damn cart! I DON’T WANT TO BE SICK AND HURTING!”
Instead, I mustered what little dignity I had left and apologized to the employee as I rolled past.
I made it through the rest of our shopping and into the car before I let the tears come.
I know this isn’t new to any of my #spoonie pals. We’ve all faced judgement and scorn in the face of our invisible illnesses. The surprising part to me, I suppose, is that incidents like this could still hurt me. I’d like to think I’ve built up a pretty thick skin these past three years. Goodness knows I’ve had plenty of practice at it.
But I was hurting, badly, and exhausted with it. So my defenses were down.
And here’s where we are. It’s Tuesday and her actions are still bothering me. The dirty looks of all who were watching are flooding my mind and eating away at me. All the good thoughts and happiness that has been poured over me in the last few days is soothing, but the hurt is still there.
My therapist, not to mention many of my dear friends, always tells me to write things out when they’re invading my mind. It doesn’t take the hurt away, but sometimes it helps me process it a bit better. So here I am, sharing this hurt with the world. Knowing that I’m not alone, and this probably won’t be the last time something like this happens.
All the while praying I’ll be stronger next time.
What do you do when a stranger hurts your feelings? What would you have done in my position?
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 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?
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 firstname.lastname@example.org 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.
It’s a chilly morning here in the PACNW and I couldn’t be happier. Fall is swirling outside my windows with the howling wind and occasional downpours. I’m bundled up in cozy jammies, slippers, and a fuzzy blanket. My days are now filled with cups of hot tea and apple cider. And gratitude. Always gratitude.
*I’m grateful Scotty has an understanding and emphatic employer. It’s rare these days to find someone who understands that while work is important, family comes first.
*I’m grateful for framily who visits with a gorgeous, air purifying plant to decorate my home and help me breathe better. A fellow spoonie who constantly goes out of her way to make my life better.
*I’m grateful for blogger friends who help me navigate this world as I continue to expand my horizons. Friends who answer texts, even while out celebrating. Friends who answer the call of “HALP! I don’t know what I’m doing!” with a laugh of understanding.
*I’m grateful for a partner who does the little things. The ones he thinks don’t matter, but they all add up to make my days so much smoother and easier. He makes the role of caregiver look easy, though we all know it is not.
*I’m grateful for a kiddo who is honest and upfront with us, even when he’s broken something he knows we can’t afford to replace. He is not in trouble because he came to us and told us what happened instead of trying to hide it, and he is already working on a solution.
*I’m grateful for a doctor who understands my life in pain, and never doubts me. He helps me manage those pain levels without judgement. He never questions me when I tell him I hurt, he just works with me to find me the best comfort available. His staff are all equally caring, and it makes it easy to turn to them for help.
*I’m grateful for framily who send me tools to help me on this journey with chronic illness. And chocolate, because obviously. For cookbooks and letters that make me smile. For notes and lists of treatment options. For a little something that touches the heart and lets me know you thought of me while you were continents away.
*I’m grateful for gift cards and the little I earn from various rewards sites that allows us to keep our heads above water.
*I’m grateful for understanding friends who don’t hold things against me, even when I hold them against myself. Especially then. For friends who know I haven’t forgotten about them, even if it appears I’ve fallen off the map.
*I’m grateful for all of you. All who read my words and offer encouragement and support. All who pass my words on to others. Each of you gives me the purpose to get up each morning and pour my heart out for the world. You give me strength to reach a little further, and share my words among other avenues.