This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.
I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!
#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard
Maybe someone else could use it too?
Chronic illness warriors are great at pushing through, but as we all know, that is not always the best or healthiest option, although sometimes it seems like the only option. Pushing through can lead to a flare up that sets us back for days, weeks, or even months. Rest is a real job with chronic illness. No matter how we may be feeling, even if it’s better than usual, every single day consists of maintenance and making difficult choices that can help or harm us in the quest for balance. Most of the choices you have to make are things the people around you cannot understand. That makes it even more difficult to prioritize our own well-being in stressful situations.
To all those who wrestle with the guilt surrounding being chronically ill or in constant pain, I am right there with you.
Love you guys!
I tried to make a new header and improve my blog’s layout a tiny bit, but I just can’t decide which header image I like the best, out of all the ones I have made. I guess I haven’t knocked my own socks off yet with any of them, so until then this blue beach scene will have to do. Reminds me of the coast in oregon on an especially pretty day, mixed with the hand-painted watercolor cards my grandma used to send on birthdays.
You can see I did decide to change the wording of my tagline from “survive with chronic pain” to “live well with chronic pain” as I think that’s a better goal for me now, more than a year out from my diagnosis of Fibromyalgia, about a year out from learning that I also had Chronic Fatigue Syndrome, Joint Hypermobility Syndrome, and Spina Bifida Occulta, and about six months into realizing that I haven’t been making as much progress as I would like, because I also need to deal with several anxiety disorders, including PTSD. It’s been three and a half years since I was in an auto accident that changed my life forever. I no longer am content with “surviving” because it’s not enough, I want to do more than just get through the day. I want to thrive, chronic illness and pain be damned.
Right now I’m really trying to remind myself to just make one or two changes at a time since I have another blog to get off the ground right now and don’t need to be spending so much time over here, but I can’t seem to stay away. At least I’m taking my own advice about making small changes one at a time instead of trying to overhaul the entire theme in one day.
I found this quote on Tumblr and immediately had to make a simple text image out of it. The original source is listed at the bottom of the image, but in case you want a direct link to the post, here it is: http://wheresagnes.tumblr.com/post/113095286140/self-care-is-not-a-bath-bomb-nor-is-it-a-face.
I also wanted to announce that I have joined Tumblr, under the same name as this blog, FindingOutFibro, and I will be trying to make as many images related to chronic illness as possible.
It’s so awesome to have Photoshop back, even though it’s like learning to use it all over again from scratch now because it’s been ten years, and even though I have to pay $10 a month for it (ugh… seriously Adobe?), I am still just happy to have a playground for all my visual ideas and a place to brainstorm my logo, header, media kit, and other branding stuff for my new business. It would probably be a good idea if I gave some thought to doing that on this blog as well.
Is anyone interested in me posting a Resources for Bloggers page with links to collections of free photoshop brushes, fonts, public domain image databases, patterns, royalty free background images and photos, html coding help, and links to a huge variety of goodies I have found as I go? I think a lot of people with chronic illness are intimidated by the thought of starting a blog. I certainly hesitated for a long time, but wish I hadn’t been so overwhelmed and had been able to start sooner when I still had a little more of my old energy. I want anyone who is even considering starting a blog to have all the tools at their fingertips to be able to get their voice out there into the world with the least amount of stress. Not that I know very much about this blogging stuff, just that I’ve been keeping track of the resources that have been useful for me as I get started, and I would love to share!
Printable Awareness Ribbon Chart
The website goes into much more detail, as well as noting extra conditions that are covered under each color/color combo. I’m thinking about doing all of the colors with each condition written on the ribbon in photoshop so that we can all save and post according ribbons if we want, without any confusion.
This search started, by the way, because a friend of mine from high school had posted a yellow ribbon as her facebook profile picture, and I wanted to know what cause she was representing, and the answer ranged from suicide awareness to bladder cancer to liver disease to supporting the troops. It wasn’t written on the ribbon, plus no clues were given via description, and that frustrates me. What’s the point if no one else knows what cause you are trying raise awareness for?
Anyhow, I will get around to that, but if illness interupts it could take some time. Hopefully I can make a resource page on this site where people can save a picture of the ribbon matching the condition(s) they have, to add to the bottom or sidebar of their page. And yes, when I do this, the first will be one for Chronic Pain all by itself, since many of us do not know why we are dealing with what we are dealing with, and many of will never know.
I might know a lot of you who fit into the “rare diseases” white ribbon, in which case, I want to make you a ribbon with your specific disease or condition or struggle, and you pick the color. Just drop me a comment, any time, either on this post or on the page I create later on. Post to come soon, hopefully with the first ten or so ribbons that are requested. I might do a poll on ribbon styling too…. it would be my first opportunity to use that option on WordPress!
Happy creative Saturday, friends ❤
I’m glad we all made it. This week felt like it just would not end, and I got next to nothing done. Hopefully this weekend I can shift gears, but I seem to be setting myself back with these big pushes when I get one slightly better day. Just so bored with this!!! I hate tv, so I’ve been trying to entertain myself other ways, and it’s hard! It’s only going to get harder when I ask my doctor for a heart rate monitor to keep track of my energy levels as best I can for a few months. Any time the damn thing beeps, I have to sit down. Doesn’t matter if I’m climbing the stairs, I gotta stop, sit down, record what time it is and what made it go off, and let my heart rate go back to a lower range. It sounds pretty frustrating, but who knows, it could provide me with some much-needed evidence-based data to share with my doctors, or it could provide me with just enough data to teach myself to live within my “energy envelope”. If you want to read more about heart rate monitoring and the logic behind it, check out these articles:
In her words:
Here’s the challenge spoonies:
Help me set the record straight by submitting your most scrunched-up, messed up, real honest-to-God pain face to email@example.com before February 28th, and I will publish a blog post that exhibits of collection of pain faces so real that people will laugh at us (because who are we kidding- these faces are ridiculous), but also see that our pain is often visible, just not usually to the world at large.
Please include your name, illness(es), and where you are from. [NEW: Also, if you like, include a little write up describing the pain you felt in that moment, and perhaps what coping strategies you were able to use.]
If you are feeling really brave, post your selfie on twitter @brainstorm83 or instagram @lousongmade with the tag #spoonieselfie.
Here’s a link to the actual post by BrainStorm: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/
UPDATE: #SpoonieSelfie Challenge has been memorialized with two installments posted by Brain Storm so far! here they are:
To keep up with what she doing as she posts it, head to: http://migrainebrainstorm.com/tag/spoonie-selfie/
Here’s my contribution, from this last week when I fell on my face in the middle of the night! Fun times!
I want to thank Brain Storm for her energy and time and for the great idea of hosting this wonderful challenge, I couldn’t think of a better way to use these pictures. It definitely contributed to me being less embarrassed about the stupidity of painsomnia, collapsing joints, a concussion and just generally feeling like a failure for falling on my face in the middle of the night. Now it has a purpose! And I totally love her for that! Plus she posted this challenge on my birthday, so how could I not participate?!
Yesterday our huge orange cat, Simba, had a lump on his chin at breakfast that hadn’t been there the night before. I’m one of those people who believes that you shouldn’t even have pets if you can’t afford and aren’t willing to take them to the doctor when you’d want to go to the doctor. So in that spirit we even have pet insurance for the spoiled little dude. It’s cheap and saves us tons of money though in the long run, but yesterday’s all-day vet visit still managed to cost us $230, even with a big discount. Ouch. I had to cancel my appointment to get my cavities taken care of today because that was all the money I had set aside. Ouch again. With no actual answers given until Wednesday when the pathology report comes back.
We are really hoping it’s an allergic reaction to putting coconut oil in his food to try to mitigate the skin problems he’s been having. He’s a finicky beast and requires filtered water to combat his propensity to form crystals in his urine, a serious, serious problem for male cats especially, that can take a healthy animal down in a matter of 48 hours if you aren’t paying attention to the warning signs. He got so neurotic for a while that we had to buy that calming cat spray and covered our entire house and furniture in it, as well as using the wall outlet system and Bach’s Rescue Remedy for pets. Plus, he somehow gained three and a half pounds even though he’s been on a strict diet since his last teeth cleaning.
We now officially own a twenty pound beast of an orange fuzzy cat. His favorite thing is being carried around, often like a baby. He doesn’t even realize that he can jump on the counters, he’s easy on most of our furniture and usually only goes after plastic bags and cardboard boxes, and he sleeps on our bed with us every night after a round of running screaming his head off around the house.
My boyfriend found him underneath a truck in the rain outside my old apartment while we were newly dating. When I came home from work he was just leaning against my building, holding this wet, skinny kitten, totally torn as to whether or not we should feed him and bring him inside. Obviously, we brought him inside, and obviously we fed him, probably a little too much
The little orange fuzzball pretty much stole our hearts from the first hour we had him.
We definitely love Simba, and it was super weird having an empty house yesterday. I worried about him all day while he was at the vet because we just had to drop him off in the morning when we noticed the lump. He’s now 6 years old and getting to that age when lumps and bumps scare me a lot more. I’m pretty embarrassed about the weight gain too, because we shell out for Solid Gold cat food that costs an arm and a leg. I guess at least now I know that our no treats, 1/4 cup of food twice a day regimen isn’t working for our fat cat. His metabolism is apparently slowing down a bit. Time to add a lot more fiber into his diet. Twenty pounds!!! Geez. He’s still a handsome boy to me, though!
And so charismatic. He had all the girls in the vet office loving on him when we picked him up. He greets all of our visitors as soon as they show up, even when he’s been asleep the entire day. It’s hilarious how he hears the voice of one of our friends, any friend, and comes running, like the official welcome committee. He lets the little three year old girl downstairs pull his tail and pet his fur the wrong way and never so much as hisses (don’t worry, I rescue him from that situation if it gets un-fun for him!). He’s just extremely unique and tolerant. We couldn’t have ended up with a better, sweeter, fatter cat.
Sorry, I know this was a post about our cat and not chronic illness, but it took up my entire day yesterday and is making me all nervous still until we get the pathology report back on that damn lump.
It made me realize that I am so unprepared to have sick kids…. holy crap, I will feel so terrible for them and so helpless. I really admire parents who have kids with chronic illnesses. I can’t even imagine how hard that would be. ❤
I didn’t find out until the Fibromyalgia Palm Challenge until a few days ago, but I’ve been wanting to participate ever since. Finally, I got my chance!
Here is my response to the Fibromyalgia Palm Challenge:
Facebook Page for Fibromyalgia Awareness (A place to display your palm pics if you don’t want to put them on your own timeline, or do both for maximum impact!) Use #FibromyalgiaPalmChallenge in the message somewhere in order to make your pic easy to find.
Please help us spread awareness of this life-changing condition by snapping a picture of your palm with one thing you learned about fibro and the hashtag #FibromyalgiaPalmChallenge on Facebook or here on WordPress linking back to FibromyalgiaAwareness.com. You do not have to have fibro in order to participate!
For a short and sweet, but extremely educational post about Fibromyalgia, I recommend this one: Why Fibromyalgia Makes You Hurt From Head To Toe
Any and all sharing of the challenge or participation is appreciated!
My grandma was an artist long after she began losing her eyesight. I wish I had one of her paintings to share, as she was a chronic pain warrior too, a fierce one, who raised 10 children on her own after her husband’s death.
I remember being about 13, standing in her kitchen where the last of the day’s light was streaming in, throwing this hazy pink glow onto everything. I watched as she dipped her paintbrush in the soft white that was going to be the main body of the moon, the last tiny part of the painting to be done. Then I watched in horror as the brush fell out of her fingers, which were arthritic and losing some of their dexterity. Loaded with white oil paint, it landed *splat* on the canvas. I almost started crying, I thought she was going to be so upset at all that wasted time, but she was pretty calm. When she picked up the brush, to our surprise, there it was, the moon. Even though it had been created completely on accident, and in an unplanned location, the perfect little circle needed very little touch-up.
Art and creativity happen even when we make “mistakes”. In fact, it happens even more when we fail and learn and try again.
It just takes more creativity to be creative (hah!) when you’re in pain or have limited mobility. I know I have what it takes to retain my artistic sides no matter what, even if it means changing my methods. If my grandma could paint with 10 children, plus a job and chronic pain, I can find the strength to pour my pain and sadness into my art too, where maybe it will do some good.
Give me a shout if you are also a spoonie with a crafty side. I know most of us have to be creative just to get through the day, so that counts too! 😀
❤ ❤ ❤
Love that image.
Sadly, we start to use this sort of language against ourselves after a time… It has to stop! Shame and guilt need to be taken off the shoulders of the chronically ill and those in chronic pain, there is enough to deal with besides having to “prove our pain” to anyone.
No one chooses to suffer constantly. No one. We all want to be happy, healthy, contributing, but you never know what someone’s suffering amounts to unless you have to live under the same burdens and restrictions.
Chronic pain isn’t easy to express, not in words or pictures. I have struggled to express how chronic pain actually feels through art. My paintings are abstract multimedia pieces, and for the most part they’re just so I have something bright to look at around my house. They leave the onlooker with no idea that I suffer with every brush stroke, every adhered scrap, every swipe of the palette knife. These five artists, however, have managed to express so many of the things I feel every day, but have no idea how to show people a visual representation of.
Since I’ve been feeling particularly lousy and in way more pain than is even normal for me, I’m gonna go ahead and let this count as a blog post? I want to do a whole series on art relating to chronic illness, but we will see. I’m so disorganized!
1. Of course, let’s start it off with Frida, who had a pain syndrome that many have speculated was fibromyalgia, as well as severe and debilitating chronic back pain which she has portrayed so clearly here. I have always loved this self-portrait, entitled “The Broken Column” even long before I developed clear symptoms of fibro:
#SpineDamage #NerveDamage #FracturedVertebrae #DegenerativeDiscDisorder #HerniatedDisc
2. The damage done to my low back from getting hit by a semi truck. Now I feel like this when my back goes out, which is kind of a lot because of the addition of Spina Bifida Occulta and Joint Hypermobility Syndrome:
#HerniatedDisc #DegenerativeDiscDisease #Scoliosis #Lordosis #Osteoarthritis #EhlerDanlosSyndrome #JointHypermobilitySyndrome #SpinaBifidaOcculta
3. Nerve pain, just imagine those lines about an inch underneath your skin, until it’s basically in your bones:
#Neuropathy #NervePain #NerveDamage
4. This one reminds me so clearly of the one sided occipital migraines and trigeminal neuralgia which I am constantly dealing with:
#OccipitalNeuralgia #TrigeminalNeuralgia #OccipitalMigraines #TMJ
5. Sad but true. This is what yoga feels like now. I am always telling my boyfriend that it feels like my spine is trying to rip clean free of the rest of my body, just like this:
I’m not posting these for pity or for shock value, sometimes it helps me to have a visualization of my pain ,because it helps me to picture it disappearing while I meditate. Other times I just want to know I’m not alone. I’m sure I’m not the only one who feels a little bit validated when they see their chronic pain taken seriously. These artists take pain seriously, but they also managed to turn their pain into something creative. Using pain as inspiration for making beautiful things or things that others will relate to is a huge goal of mine as a formerly creative person. Illness can’t have my creativity, and these honest portrayals of the agony of chronic pain help me remember that art and the freedom it gives us is such an integral part of healing. Time to start painting again!