National Pain Strategy #ISpeakForPain

Posted on by Grayson

A few months ago, the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services released a National Pain Strategy. This strategy provides guidance on developing ways to measure pain and its management, improving care surrounding pain, and increasing public awareness of pain in order to destigmatize it.
As pain patients, we know that pain affects much of our lives as well – something that others aren’t necessarily always in tune with. This strategy would help to recognize and promote that to those currently not in the know.
This would also help to lower the people who are on opiates unnecessarily and help them to gain access to other pain management fitting their pain. It is, after all, a part of the initiative to lower opiate abuse.
The National Pain Strategy is a first-of-its-kind blueprint for improving chronic pain care in America, that increases research of pain treatments, medical training for clinicians, and awareness of chronic pain as a disease of epidemic proportions. Without an outcry from patients and advocates, NPS may not be implemented or funded at all. The chronic pain epidemic must be addressed immediately by fully implementing and funding the NPS.
The National Fibromyalgia and Chronic Pain Association, along with The Consumer Pain Advocacy Task Force, have combined forces to create a petition on the White House petition site in order to ask for this to pass.
We need 100,000 signatures by August 12. As of this morning, that means we need just shy of 92,000 signatures in ten days.
I know we can do this if we all sign and share.
What can you do to help?
  • Sign the petition here and make sure to share on social media (bonus points for using tags like #ISpeakForPain!)
  • Write a blog post or record a video about it and share that!
  • Use the photo I’ve created below to share on Insta

 

Ensuring that this passes will make the world better and less painful for us. Let’s do what we can to make it so.

 

RIP Oreo

Posted on by Grayson

If you follow me on social media at all, you’ll notice that I’ve gotten hella sad and depressed.
Oreo, our oldest guinea pig, passed away Monday night after needing emergency surgery.
He died in my arms. I tried to bring him back. He was just too far gone.
It’s so sad.
In January of 2015, T found a photo of Oreo and wanted to go see him even though we already had our Jaq and Gus Gus. The shelter he was located in was not really used to guinea pigs and didn’t have the right things to take care of him, from food to the cage setup. They also had him right outside of the dog area and Oreo was very scared.
I don’t often talk about things, but I have some emotional… sensitivities or gifts. Empathy with animals is the big one – I think because I had to tone down the human empathy due to my upbringing. I still sense things with many people but have blocked a lot.
Anyway, feeling his fear and worry, I couldn’t stand to see Oreo like that. So I fought to bring him home.
Here’s the Facebook post from January 26, 2015, the day after we saw him:
So I may have just been hella assertive.
 
This little guy’s name is Oreo and he has been at the Jefferson County Humane Society since the end of September 🙁 He’s close to the dogs, and gets very scared when they all start barking. He’s also in a chilly area that could potentially cause more URIs. We went and saw him Saturday, and fell in love.
 
I found out today that our apartment complex has a two pet restriction after getting a sad call from JCHS that we couldn’t take Oreo due to that. I think honestly it is because they allow cats. I can understand how too many cats in an apartment would cause a lot of extra clean up once the owners move out… but a caged animal like a guinea pig?
 
I brought up fish, which are also caged animals, and was like do you allow only two fish?
 
I felt pretty good about it.
 
Needless to say, I won the battle and Oreo gets to come to his furr-ever home tomorrow night
Within a week, he had settled in with T and I – though he was very nervous.
We quickly found that he did NOT get along with Gus Gus, but fell in love with Jaq.
Oreo’s owners prior to being at the shelter had allergies. He was always by himself and wasn’t handled much. As a result, he didn’t know how to act like a true guinea pig. That changed as he and Jaq got to be best friends.
He quickly also learned how funny it was to pee on me.
He even followed in T’s footsteps and started learning about baseball.
He would help me try to wake T up from weekend naps…
And then give up.
And then enjoy snuggles with the biggest smile.
He and Jaq and Gus tried to get along, but Gus doesn’t play well. Still, it made for some cute pictures.
Jaq and Oreo would groom each other…
And snuggle together…

And explore together.

 

Oreo was the first piggie to brave the kitchen, too!
He always took it upon himself to protect Jaq.
They were inseparable.

 

Oreo was incredibly photogenic.

 

 

 

 

T got me the sweetest Christmas present – a drawing of me and all three of our babies.

On his home-a-versary, we fed Oreo a ton of his favorite – red peppers.
He was involved in politics…
And patriotic…
And always promoted healthy body image…
He was grateful…
And he was an amazing snuggler.
When Oreo had his first bladder stone surgery in April, it was hard on Jaq. He visited often until Oreo was well enough to go back home.
He and I watched Ghost Adventures and more together.
We had to feed him baby food.
He also enjoyed eating piggie wipes.
He was so happy when his incision had healed enough to have big snuggles.
And enjoyed sleeping in the sun.
He started behaving in a way that showed the pain relief from this bladder stone, running between T and I looking for scritches and snacks.
He would even skip us and wait by the fridge or in the kitchen for noms.
On Saturday, he was still full of loves and snuggles and popcorns.
On Monday, we took him to the vet because he thought he was impacted with the poos. It turned out that he was trying to pass huge bladder stones lodged in parts of his body.
I will always hate that our last real picture with him was at the vet.
When we brought him home, he had a really hard time coming out from the drug-induced sleep. Around 10 pm he started to breathe funny. I started to pet him and talk to him.
Then he just stretched out and stopped.
I tried to wake him up, to bring him back. I did CPR and mouth-to-mouth. I woke T up and we both tried while crying.
Neither of us really slept. We held each other and cried all night. And in the morning, we did it again.
I somehow knew this was coming. I had pain in places he hurt. I kept having nightmares. I kept thinking what would happen if one of them passed and it was always Oreo in my thoughts.
The nightmares are gone, but I’d keep them if it would bring him back.
On Wednesday, we brought him home for the last time.

 

I love you so much, sweet Oreo. You brought so much love and laughter into this home. You grew from a scared and worried boy into one of the most trusting and approachable pets I’ve seen. You were so amazingly sweet and kind. Even while you were in pain, you were focused on your buddy, on being happy-go-lucky, and on love.
I will miss you every single day until you welcome me over the rainbow bridge.

 

Love Your Body

Posted on by Grayson

As an act of kindness to your body, write below one thing you appreciate about each part you usually criticize. (If you feel inclined, you can take it one step further and say these things to your body while looking in a mirror.)

You might not love your legs, but they get you from point A to B; you might wish you had thinner arms, but they allow you to hug the people you love and hold your baby.

Do you feel better able to treat your body with kindness after doing this?

I love my shoulders and neck – their ability to handle pain but still function is impressive and admirable.
I love my legs that work so hard to support me, even when they feel like death.
I love my arms and the freckles they display.
I love my swollen and painful hands because they allow me to cook, write, design, snuggle, and interact with the world around me.
I love my big butt because it’s cute.
It wasn’t super easy to start this but, once I did, I started to think about more and more things than I had anticipated. I’ve never really hated my arms, but never really embraced them either.
The irony!
Have you done this exercise? What did you discover about yourself?

 

“No signs of active SJIA”

Posted on by Grayson

On Wednesday, T had some doctor’s appointments to get out of the way.
I got some labs there as well since we were there.
Today, my rheumy sent back my lab results via my Electronic Medical Record.
“I have no signs of active SJIA.”
What the fuck does that even mean? My sed rate is creeping higher, but perhaps that’s okay since it’s still within normal parameters.
I don’t understand. I’ve been dealing with some pretty intense pain. Is that just fibromyalgia? Is there something else going on?
Is my SJIA in remission? How do I handle this?
I have no idea.
I see my rheumy this Friday and will hopefully have some answers then. Until then, my mind will be racing.
Hooray.

 

Heading to Phoenix!

Posted on by Grayson

This time tomorrow, I’ll be in Phoenix, Arizona, frantically prepping to talk sex and arthritis with the young adults (18+) living with JA at the Juvenile Arthritis Conference West.
I’m super excited. Oddly, I feel like I should be much more nervous than I currently am? Like, running a session isn’t something I’ve ever done?
But I’ll have some amazing people up there with me including my pal Mariah.
I have to go finish resource sheets and frantically pack while singing Hamilton so I get cocky instead of too freaked out.

 

A Recap of the #SelfCareMvmt Summit

Posted on by Grayson

I was introduced to Self Care Catalysts when I attended ePharma back in March. I really had a great time speaking with the SCC team. SCC paid for my travel to Toronto for the #SelfCareMvmt Summit. However, all thoughts below are my own and have not been influenced by said compensation.
 
I just really, really love this team, who put this together in three months.
 
Courtesy of Health Storylines
Make sure to check out #selfcaremvmt on Twitter for some fun convos around this summit. 
Dude, Canada was awesome.
My trip was fun… though my flight was delayed four hours. I was okay with that, though, since there was a mechanical issue with the door on the previous plane!
Plus, I got wine and some free food.
I rested most of the day of the #selfcaremvmt summit, since it felt like I needed to practice what I preach with regards to self-care. I spent time with my pal Kristin, just hanging out and enjoying each other’s company.
The shirt was from Wear Your Label, obviously
When we arrived to the MaRS building, it was time to enjoy some delicious food and get mic’d up…
Kristin Coppens, Lene Anderson, and me with my blonde hair
But not before spending time with Lene Anderson! I also got to meet friends like Annette McKinnon, though we neglected to commemorate that with a photo – d’oh!
Courtesy of Kristin
The keynote speaker of the evening was Margaret Trudeau, the former first lady of Canada and, yes, Justin Trudeau‘s mom. She was hands down one of the most amazing people to see speak. I have had the honor of seeing many people in various venues, but this was something.
As someone living with PTSD, I find it hard to discuss that in public due to stigma. That night, I watched Margaret Trudeau openly discuss her Bipolar Disorder in the most endearing, hilarious, and frank way.
I had goosebumps for the bulk of her talk.
I just really wanna be her best friend.
We heard from other amazing people such as Filomena Servidio-Italiano from the Colorectal Cancer Association of Canada, psycho-sexual therapist Sandra Rotholc, psychotherapist and physician Lucinda Sykes, writer and Crohn’s disease patient John Bradley, comedian Robert Hawke, and then us cool ladies on the patient panel!
This has been one of the biggest things I’ve participated in. I was nervous at the beginning, but not by the time I got on stage… which is weird for me. I’m used to always fearing speaking in front of others.
Not anymore.
Courtesy of Health Storylines
I did not mean to match Rob, but hey it worked out pretty well!
During the summit, I learned so much about grace, love, and support. It reaffirmed so much of what I already knew – the universality of how illness makes us feel alone, in denial, and struggle with day-to-day life.
It helped to make it more obvious that the work we do as patient advocates and activists is so needed.
The most important thing for us all to remember is that age-old illustration of oxygen masks on an airplane. So many of us push ourselves out of self-care under the guise of helping others – sometimes that’s the real reason and other times we’re in denial.
Courtesy of Fresh Stitches
And that’s okay.
But we can’t help others without taking care of ourselves. It’s impossible to help people if you’re dead or if you don’t have the energy to do so.
We just have to remember that.
At the end of it all, CEO Grace Soyao announced a self care design challenge. We are charged with answering the question:
 
How might we support and enable self-care as part of the management of long-term chronic conditions?
 
Think you have a way to answer that question? Enter your submission here and you could get the chance to go hang out with SCC in Toronto for two weeks as well as snagging a $1,000 stipend while you work to incorporate your idea into SCC’s Health Storylines app.
 

 

July is Juvenile Arthritis Awareness Month

Posted on by Grayson

July is one of my favorite months, and it’s not just because T’s birthday is the 15th.
It’s because it’s JA Awareness Month!
According to the Arthritis Foundation, there are six main types of Juvenile Idiopathic Arthritis (JIA): Oligoarthritis (4 or fewer joints affected), Polyarthritis (5 or more joint affected), Systemic, Enthesitis-Related, Juvenile Psoriatic Arthritis or Undifferentiated. There are also additional types of Juvenile Arthritis that also commonly occur in adults such as fibromyalgia, lupus, MCTD, and more.
We all know that illness can be hard to bear, but this is especially true in childhood. Often, we get upset that we cannot function as another child may, even resorting to thinking that everyone has this pain but we just super suck at handling it.
The elimination of self-esteem in illness is so real… which is definitely why, for adults, we have Chronic Sex now.
Speaking of: Are you heading to either of the Juvenile Arthritis Conferences put on by the Arthritis Foundation this year? I’ll be at both and would LOVE to see you! If you are in the young adult age range (18+ with arthritis), please note that I will be presenting along with some pals on relationships and sex in a closed-door session taking place during the final time slot on the Saturday of each conference. Come talk sex with us!

 

Serenity CBD Lotion

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 The Fay Farm, all opinions in this review remain my own and I was in no way influenced by the company itself or by Chronic Illness Bloggers.
The Serenity lotion from The Fay Farm is geared towards those of us who have high anxiety and need help calming down… AKA perfect for me as I have left my job to try to take writing full-time! I also have been diagnosed with depression, anxiety, and post-traumatic stress – all of which put me into highly emotional states. With ingredients like chamomile and green tea, it’s no surprise that this lotion is incredibly helpful!
CBD has been found to reduce anxiety from simulated public speaking for people with fears of just that. There is a ton of similar research out there on anxiety-related issues and PTSD. Needless to say, my issues with both certainly prompted me to jump at the chance to try this product.
I had this lotion for several days while on a prednisone taper and I have to say that it was actually far more helpful than I imagined in calming me down.
It’s also very soothing. It has been incredibly helpful for me while trying to sleep but being unable to because of pain. It may not erase everything I deal with in that moment, but it helps me to stop stressing over my inability to sleep and to be far calmer. It has also helped me out plenty with other anxiety-riddled moments.
I have been bleaching my hair. A few weeks ago, I tried to dye it light blue and it came out much darker than expected. Because of the uneven color, it just really looked bad… but it also sent me into a PTSD freak-out. There was a time when my mother had a breakdown and cut all her hair off to the point where splotches where there where you could see her scalp. Her brown locks were gone and all that remained was this dark salt-and-pepper short gray hair… and I looked like my mother with my far-too-dark blue hair.
The hippo Snapchat filter improved the look, trust me
Cue the construction of PTSD-ville, population me.
Thankfully, I lathered myself in this lotion, started furiously texting my pal Felix, and promptly re-bleached my hair.
SO MUCH BETTER
Then, yesterday, I managed to get myself into a panic attack over death. I realize I do this fairly often, but this was the first time it’s happened in a while – and it started over something so small. I was snuggling with T, looking at his gray hair, and simply said “we’re old now.”
My brain went BUT WHEN YOU ARE OLD YOU DIE AND YOU WILL BE ALONE FOREVER AND AHHHHHHHHH.
I tried to fight it for a few minutes, but I couldn’t.
Luckily, I cried it out into T’s shoulder and ran into the bathroom to lather myself in this lotion.
We went and saw Free State of Jones (which was good BTW) and, despite all the death associated with the movie – and the Civil War – I managed to not freak-out… which is, honestly, pretty darn impressive. Usually I’m crying off and on in existential-crisis-mode for the rest of the day.

via GIPHY

To you, amazing Washingtonians who make this lotion, I send my deepest and most heartfelt thanks.
 
Are you interested in snagging some CBD products from The Fay Farm? You can snag Serenity in 2 oz or 8 oz.
To learn more about The Fay Farms’ CBD products, please read this post from Julie Ryan at Counting My Spoons or check out my previous review of the Healing Lotion in The Fay Farm’s CBD line here. 
 
 

 

Are you ready for the #selfcaremvmt???

Posted on by Grayson

A while back, I wrote a few blog posts about self-care:

 

In each, I discussed how I was introduced to Self Care Catalysts through ePharma. Their upcoming movement centers around how important it is to care for ourselves as patients with chronic illnesses and to celebrate the moments where we have been able to care for ourselves.
Now it’s time for the Self Care Mvmt event in Toronto!
Thanks Wikipedia!
You best believe this Wisconsin girl is going to have a heck of a time near the Hockey Hall of Fame even if the Blue Jays aren’t at home. I will also bring back as much maple syrup as they allow me to because I need the good stuff to make some maple donuts. For not having grown up in Wisconsin, I really fit in here. WOW.
Mostly, I am just so stoked to be spending time with my pals Lene and Kristin.
Please check out the tag #selfcaremvmt on Twitter for more fun stuff, especially Monday night. You can also catch up on stories that many chronic illness peeps have shared here.

 

The National Mobility Equipment Dealers Association

Posted on by Grayson

This is a sponsored post written by me on behalf of National Mobility Equipment Dealers Association for IZEA. All opinions are 100% mine.

With different types of arthritis and other chronic illnesses, it’s not always easy to know from one day to the next how our mobility may change. One of the most difficult things that those of us in wheelchairs face is getting vehicles that are wheelchair-accessible.

 

Today, I would like to introduce you to NMEDA, the National Mobility Equipment Dealers Association.

I was originally introduced to them at the Abilities Expo in Chicago last year. NMEDA is a non-profit originally based in Florida that focuses on helping those of us living with mobility issues to live our fullest lives possible by providing a safe place to acquire mobility equipment. Since 1989, they have gone national in the United States and Canada. Now there are over 600 members of NMEDA, all focused on that same goal.

One of the things that makes NMEDA great is their Quality Assurance Program (NMEDA QAP).

The QAP is the only national recognized accreditation program in the mobility equipment industry. This program helps to keep quality high in order to protect the consumer. Requirements of the program include having a certified welder if modifications are done on site, undergoing annual audits, having a dedicated contact number for mobility-related issues and questions, and making sure to have their shops and dealerships ADA-compliant.

The biggest benefits for customers working with a NMEDA QAP dealer include: in-person evaluations, specialized training of equipment, 24-hour local emergency roadside services and so much more! 

I honestly had no idea how many amazing accessible options there were for car-related accessibility issues. NMEDA mobility equipment dealers offer wheelchair ramps, hand controls and steering aids, transfer seats and seating solutions, wheelchair securement and tie downs, scooter lifts and special acceleration and braking solutions for adaptive vehicles.

 My great grandmother had MS, but she did not have an accessible vehicle. Due to this, she was quickly forced from being in the driver’s seat to always being a passenger in my lifetime… She hated it. It’s amazing to see the options that could have been available to her if she was alive today.

She would have loved having this freedom.

 I think she also would have loved the great financing options that NMEDA has compiled. Part of why she didn’t have an accessible vehicle is because they are so expensive. NMEDA, though, has information on state agencies, public assistance, grants, and ideas for crowdfunding on their site.

NMEDA has worked closely with organizations such as the Christopher and Dana Reeve Foundation, the National Multiple Sclerosis Society, and the Association for Driver Rehabilitation Specialists. The testimonials on their website help to highlight this important work as well.

One of the things that I love about NMEDA is that they take the time to recognize leaders in the industry who have made a difference for those of us with mobility issues through their Hall of Fame. Currently, there are 18 people in the hall of fame, all of whom have helped people with mobility issues to live well through their innovations and non-profit work.

Make sure to check out the vast mobility- and illness-related resources they have on their site.

 Photos were provided by NMEDA.

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