Fibro-versary

Posted on by Grayson

Welp, today is the day (four years ago) I was diagnosed with fibromyalgia.
It took me breaking down in my old rheumy’s office to get anywhere with this diagnosis. I had been complaining for months about classic fibro pains AND the rheumy I had before this apparently putting in his notes that he thought I had fibro… without telling me. Then I finally went in crying because I knew I either had fibro or Multiple Sclerosis (which I watched my great grandmother suffer from).
I begged for whatever tests were needed to get me the truth so I stopped crying myself to sleep at night and debating getting into car accidents in order to get some pain relief at some point.
It’s been a long road.
(source)
I have to say that it’s interesting to really notice how much of a butthead my fibro is now that my SJIA is more under control. I don’t know that we really ever have had my fibro under control. I started getting trigger point injections (post coming soon-ish I hope) and will soon be starting acupuncture to deal with my neck/shoulder/back pain. I am already experiencing great pain relief and am ecstatic to see what happens in the future.
So, um, happy birthday fibro… you butthead.

 

My 5 Favorite Phone Apps

Posted on by Grayson

As a blogger, health activist, and my own boss, I’ve been through a lot of apps on my phone over the years. Not too many actually stay on my phone, or, if they do, stay relevant and frequently used. Needless to say, when an app stays and stays relevant to my life? It’s a big deal.
 
It’s probably no secret to those of you who follow my blog that Buddhify was going to make it onto this list. There are over 80 tracks culminating in over eleven hours of meditation. There are also timers for those of you who are down with meditating sans guided tracks.
One of my favorite things is that there is a ‘pain and illness’ section. I have found the most amazing help via this app when it comes to dealing with my post-traumatic stress, anxiety, and physical illnesses, too.
Available via App Store and Google Play. You can also listen to some tracks via SoundCloud.
This personal assistant app has earned accolades from CNN, Yahoo!, Forbes, and was named to Apple’s App Store Best of 2014. 24me is amazing. It doesn’t just have a calendar, but to-do lists and notes. Plus, you can add in your own photos to rotate at the bottom of the calendar, which is always fun.
The other part that I love? It’ll remind me when I have some free time to accomplish some of the things on my to-do list. When I worked my day job, I didn’t find this useful as my time at work wasn’t necessarily ‘free time,’ if you know what I mean. Working for myself, though? YES.
 
Available via App Store and Google Play.
 
What if a millennial with a love of gifs designed a weather app? It would be Poncho.
Alerts have gifs incorporated into them as well as hilarious scenarios or sayings while also giving you the weather. I don’t even know how to say that it’s cool in words. All I can say is that it keeps me prepared when I’m traveling – especially as it’s in my pull-down on my iPhone like my notifications are.
Available via App Store and Google Play. You can even get updates, though, via email or text. Currently, they only cover the continental United States, though. If you sign up online here, you can easily set your settings AND help me score a pair of sunglasses.
 
Boxed is an easy way to order items in bulk that ship directly to your home. You don’t pay any membership fees and get free shipping with orders over $75. Don’t worry about doing the math, though – Boxed keeps a running total at the top of the app with how close you are to free shipping. And your first order? Free shipping, no matter the cost.
Everything ships within a business day which means little waiting! You also get 1% in cash rewards for each purchase.
They have everything from things for pets to cleaning supplies to home office stuff to grocery and drinks. I’ve really enjoyed how easy it is to order from the app in addition to simply taking things upstairs instead of having to go shopping and then lug it all up.
Boxed is a time and spoon saver, for sure.
Available via App Store and Google Play, but will only work in the lower 48 states.
Camscanner is exactly what it sounds like – a scanner for your phone that utilizes the phone’s camera.
It is vital to the resources I pull and research I do because, let’s face it, writing notes with arthritis sucks.
Really, really badly.
With Camscanner? I just have to scan books in to read later, whiteboards for perfect notes, or photos that are from ye olden days of no digital files.
Available via App Store and Google Play.
These apps, save Boxed (which is newer to me), have all been with me whether I’ve had an Android or iPhone. They work extremely well. The ones that require payment are ones I would gladly pay 100 times over for. Every single one of these apps is integral to my life as a chronic babe who runs my own businesses and travels a lot. I couldn’t imagine my life without them again.
 
What are YOUR favorite apps?

 

My Anti-bucket List

Posted on by Grayson

A lot of times we talk about our lives in things we want to do or wish to accomplish. Sometimes, I find it easier to think of the things I wish never to repeat or endure at all. Some of these are things very few of us have to worry about and others are silly, but they’re all a part of my list.

Talk to or see my mother or my other abusers again.
I don’t need that shit in my life, y’all.

Be in a plane crash.
My grandpa died in one with his Cessna. I just imagine it would be the scariest.
Shoot an animal.
Just nope.
Be responsible for the death of another, even indirectly.
I hate if I hurt a mosquito biting me to try to feed her babies. I hate when I run over a frog I couldn’t see. I don’t like to hurt anything because I value all lives, all souls.

Hurt or abandon those I love.
It’s a running thing in my Family of Origin. I aim not to do it.

Go to Burning Man.
There are way too many people there.

Run a marathon.
LOLOLOLOLOLOL
Do a cleanse.
Those things honestly are really bad for our bodies
Get back with an ex, even as friends.
I’ve dated some pretty awful people.

Give people too many chances to hurt me.
Been there, done that.
I will always fight for others while pointing out how race, poverty, ableism, patriarchal society, societal standards, etc, harm us all
Stop caring about my fellow patients, no matter their illness.
See above. It’s not fair for movements like #PatientsNotAddicts to keep demonizing our fellow patients.

Apologizing for being me.
I’m a rebel. It’s how I’m meant to be. In most aspects of my life, that tends to be a good thing. I refuse to hide it or cover it up just to help others feel more comfortable. Not everyone likes a rebel, especially one who tells it like it is. I’m not here for everyone to like me.
 
What are some of your anti-bucket list items?

 

10 Arthritis Myths and the Facts to Dispute Them

Posted on by Grayson

Let’s explore the wonderful world of myths and misconceptions about ‘arthritis.’
 
1. Arthritis is for old people.
2. Arthritis is just wear-and-tear.
3. All arthritis is the same.
I thought it best to address the top three here together since they’re so interrelated.
Often, people think of osteoarthritis (degenerative/wear-and-tear arthritis) or osteoporosis (porous bone/low-bone-density) when they hear ‘arthritis.’ This is a misconception.
‘Arthritis’ is actually an umbrella term for illnesses in which ‘arthritis’ or inflammation/stiffness in joints is a symptom. What diseases fall under the arthritis umbrella? Lupus, Rheumatoid Arthritis, Juvenile Arthritis, Ankylosing Spondylitis, Bursitis, Chronic Fatigue Syndrome, Gout, Fibromyalgia, Psoriatic Arthritis, Vasculitis, and more.
These types of arthritis can hit anyone, from infants to the super-old.
4. Arthritis is easy to diagnose.
Wear-and-tear arthritis can be easy to diagnose, but many other types – Rheumatoid Arthritis, Lupus, Juvenile Arthritis, etc – are not. There is no one test that fully confirms which type of arthritis a person has. Some tests may indicate whether or not you’re heading in the right direction, such as a positive ANA may indicate Lupus, but isn’t a for-sure thing.
These diagnoses are made by exclusion and symptoms.
 
5. Yoga cures arthritis.
NOPE.
While physical activity can be very helpful for types of arthritis, it isn’t always the easiest thing to undertake. I have actually been banned by my rheumatologist from doing yoga before due to how detrimental it would’ve been on my health at the time.
We patients, in conjunction with our doctors, know what is best for our bodies. Please don’t recommend types of physical activity to patients unless we ask for your input.
 
6. Rum-soaked raisins cure arthritis.
ALSO NOPE.
There are NO CURES for ANY TYPE of arthritis. Just no.
Again, we patients, in conjunction with our doctors, know what is best for our bodies. Please don’t recommend ‘cures’ to patients. EVER.
 
7. Arthritis is a minor inconvenience.
Arthritis causes excruciating pain that cannot be expressed with words. Aleve doesn’t do it to kill the pain – oftentimes even opiates only minimize the pain enough for people to be kinda functional.
On a good day, my pain sits on a 3-4 on the pain scale. On a bad day, I jump up to 7-9… mostly because I am reserving my 10 for whatever will wind up being my stubborn butt’s first hospital stay. When I hit those bad days – and that is at least half of the week – I cannot focus on anything. If I absolutely have to accomplish things, they’re done with less attention and care than they would be on a better day.
 
8. Treatments halt damage and pain.
Even people in remission (no active signs of their disease – this is not the same thing as a cure) still have pain from their illnesses. Treatments or no treatments, there is still pain.
 
9. Damage only happens when there’s pain.
Pain isn’t an indicator of damage. Damage can happen whether or not pain is an issue. This is why it’s so important to be on medications to treat arthritis types, no matter your pain levels, unless your care team believes you are in remission.
 
10. It’s not like arthritis ever killed anyone.
Um, it has. So many people, including children.
I mean, the reality is that the medications we take have side effects – not all of which have truly been studied yet – and, thus, effects ripple through various parts of our lives. The disease itself causes major issues that, again, aren’t fully understood by healthcare providers yet.
We live in pain every single day in a society that doesn’t get us, leading to depression and higher rates of suicide in the general chronic illness community, too. This is important to remember as we look to revamping mental health care in the United States (I hope).
 
These are just my top 10. What would YOU add?

 

September is Pain Awareness Month #PAM16

Posted on by Grayson

There is irony in the timing of my writing this in my non-flattering state you see above.
It’s currently Wednesday, August 31, close to 9 pm Central Time. I was fine all day – really productive and got some self-love stuff done even. I made the mistake of having a full glass of milk around 4:30 pm… then around 7:30 pm, my pain went straight from a 2 to a 7. Extra medications, my tens unit, and ice barely brought it down at all.
 
Oh, the pain.
Well, September is Pain Awareness Month! It was started in 2001 with the help of a number of organizations coming together. You can learn more about the history via this PDF.
According to Johns Hopkins, 100 million Americans deal with chronic pain… my guess is the real number is slightly higher than that since the CDC states that 117 million Americans as of 2012 had some sort of chronic illness or disability. You can find some additional facts, though they’re from 2007, over at Health Central.
 
What can you do to raise awareness or help?
Learn more about and share People with Pain Matter, a new initiative from the US Pain Foundation (I shared them on Medium).
Share your story, whether it’s one blog post or a daily account on social media. Make sure to use the tags: #PAM16 #PainAwarenessMonth #USPain #IAmAPainWarrior (Optional: #30DayChallenge #PeopleWithPainMatter). Make sure you’re not being ableist and utilizing tags like #PatientsNotAddicts though. That just hurts other patients with genetic predispositions, trauma, and other pain. Addicts are still humans – and still patients. Don’t be a jerk.
If you’re going to tweet/post/IG your pain, check out the 30 Day Challenge for themes and ideas. The US Pain Foundation Facebook page also has a ton of information and will have a lot of new stuff going up this month.
Speak out against organizations that try to trademark and profit off of our pain by eliminating other organizations they don’t like with said trademark. (Confused? Catch up here.)
You can add a Twibbon to your Facebook or Twitter profile photo, like I’ve done above, here.
Remember that it’s also Animal Pain Awareness Month so if you have a spoonie pet, share their story, too!
And, please, be kind to yourself this month regarding your pain. It’s okay to do less or to say no to things in order to take care of you. I love you and you need to be safe.

 

Review: Organic Aromas Nebulizing Essential Oil Diffuser

Posted on by Grayson

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift from Organic Aromas, all opinions in this review remain my own and I was in no way influenced by the company itself or by Chronic Illness Bloggers.
Y’all know I’m not into the essential oil thing too much. I have a few oils that I picked up after visiting a medium back in 2014. Because of my fibro symptoms, it’s been too much to utilize the oils directly on my skin unless I’m really desperate. Plus, I got avocado oil as the main oil… without remembering that the guinea pigs are super allergic to avocado.
All in all, it’s safe to say essential oils haven’t been my thing. That’s actually why I’ve been excited to try this product. I received my Essential Oil Diffuser shortly after coming back from the JA Conference East in Philadelphia (a blog post on both JA Conferences is coming, I promise).
Before we dive into what I thought of the product, you may be wondering how this fancy-looking dealamabobber works. For that, I direct you to Organic Aromas’ page on the matter. The biggest thing is that this diffuser doesn’t need water or heat, meaning that you have the ability to receive the awesomeness of the oils and scent. If, like me, you wouldn’t mind getting more information about essential oils, check out their page on that as well.
The box itself was pretty cute, and I really liked the simple design of the diffuser itself.
It also CHANGES COLORS.

 

At first, I had an issue utilizing the diffuser with the oil sent to me with it. The blend, meant for serenity, actually was an overload of smells and I had some migraine-like reactions to it. I’m sensitive to smells and, ironically, that oil wasn’t giving me serenity. This blend contains cedarwood, yiang yiang, lime, and lavender.
I’m familiar enough with lime and lavender, which have never had an effect on me like this, but the other two are scents I’m not normally exposed to. Since I have some funky plant allergies, I’m chalking up my reaction to those.
To test if this was the issue, I popped in my cinnamon essential oil that I already had. Things went from uh-oh to YES. Plus, my apartment smelled amazing. I wish that the scent reached a little further, but the reach is easily adjustable with the ‘volume’ button. When that is increased, it does increase the noise a little bit from whisper-quiet to phone-vibrate, but this is an easy noise to deal with and drown out. After about five minutes, I didn’t notice it anymore.
At those higher ‘volumes’ there was also some fog coming out the top that was super cool.
I am excited to see how much I’ll be able to make my apartment smell like fall shortly.
 
So, Organic Aromas Nebulizing Essential Oil Diffuser: Yea or nay?
Definitely yay, but with some personal tweaks.
You can learn more about Organic Aromas at their site or check out their Amazon page.

 

Featured on Kids Get Arthritis, Too!

Posted on by Grayson

Hey hey hey, guess what? Yours truly was just featured on Kids Get Arthritis, Too!
PS I seriously cannot believe the company I am in. Check it out:
Jen Horonjeff is pretty much the bomb dot com and runs the Young Adult track at the conferences with Jenn Ziegler (additionally, also the bomb dot com). Ana? She’s on Broadway, starring as Gloria Estefan in On Your Feet. Todd is a badass racer. Elizabeth has done a lot to raise awareness of arthritis. Margo is a talented and amazing musician who also wants to be a doctor. Liz is a clinical social worker who works with those of us living with chronic illnesses.
It’s fine. I’m totally not crying right now at being included with this group of amazing people.

 

9 quotes to inspire you to bounce back

Posted on by Grayson

One of my favorite words in the English language is resilience. Merriam-Webster defines resilience as:

1:  the capability of a strained body to recover its size and shape after deformation caused especially by compressive stress;

2:  an ability to recover from or adjust easily to misfortune or change

When I think of resilience, I think of myself and other patients facing lifelong illness-related issues. Resilience is the perfect word to describe what traits we possess without using words like strength, which are too commonplace and far less meaningful.
Here are a few of my favorite resilience quotes – enjoy!
“I am not what happened to me. I am what I choose to become.”
-Carl Jung
“My scars remind me that I did indeed survive my deepest wounds. That in itself is an accomplishment. And they bring to mind something else, too. They remind me that the damage life has inflicted on me has, in many places, left me stronger and more resilient. What hurt me in the past has actually made me better equipped to face the present.”
-Steve Goodier
“Resilience is, of course, necessary for a warrior. But a lack of empathy isn’t.”
-Phil Klay
“Resilience is very different than being numb. Resilience means you experience, you feel, you fail, you hurt. You fall. But, you keep going.”
-Yasmin Mogahed
“Toughness is in the soul and spirit, not in muscles.”
-Alex Karras
“Though she be but little, she is fierce!”
-William Shakespeare, A Midsummer Night’s Dream
“You may have to fight a battle more than once to win it.”
-Margaret Thatcher
“The greatest glory in living lies not in never falling but in rising every time we fall.”
-Nelson Mandela
“It takes courage to grow up & become who you really are.”
-E.E. Cummings
What are some of your favorite quotes?

 

Bracelets!

Posted on by Grayson

I had been toying around for a while with the idea of creating bracelets in order to raise awareness and show off how strong us patients are.
The other day I felt really adventurous so guess what?
Bracelets!
They’re stretchy and made of rainbows! Okay, that’s what I tell myself, but the rainbow color is really nice. They say ‘Not Standing Still’s Disease’ on them.
If you take a look at the sidebar to the right of this post, there’s a spot to purchase them. They’re $5 each with a $1 charge for shipping in the US and a $5 charge for shipping around the world. The shipping costs do not go up if you order more than one.
Right now I only have 30 bracelets, but will get more if there is a lot of interest in them, so please keep me updated! And I’d love to hear if you have other items or products you think would be fun to have.