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.

Visit Sponsors Site

 

Change

Posted on by Grayson

Be honest with yourself about what you most want to change in your life and why you haven’t done this yet. Then identify one thing you can do to work toward this today, and do it.

How have you been protecting yourself by lying to yourself? How has lying to yourself in this way actually hurt you?

What would your ninety-year-old self tell your current self about making a change, starting now?

What did you learn about yourself, and what did you do to begin creating change?

This is definitely a fitting question for someone at the beginning of a big journey.
I am nervous as fuck, but I also know that I’ve let that stop me in the past from doing things that I would have enjoyed and excelled at.
That’s why I’m taking this leap now.
After September, we’ll see if Chronic Sex goes anywhere further than jut a chat and podcast. Even if it was only that and it brought in no money, it would be worth this time off to develop it and to focus on my health.
This week, I aim to finish up my business plan and work on securing some more guest posts for the CS site. I’ll also work on getting the podcast in motion – if you’d like to help, check out our Patreon page.
By taking this leap, I know that I will have little regrets about this growing older.
I’m just really excited to fully dive in.

 

Westward, ho!

Posted on by Grayson
This morning we started a fun trip – driving from Wisconsin to California!
T, ever the joker, put ‘wagon caulk’ on the list of things to bring as well as clothes fit to ford a river. My Oregon trail past will never disappear.
Via Playbuzz
I’m really excited because we get to spend time with my sister and her cuties, Sammy and Missa Mae. It’s amazing how much they’ve grown since September and I’m anxious to see them.
JUST LOOK AT HOW BIG THEY ARE NOW Y’ALL
One of the awesome things we didn’t realize when we picked this weekend is that the Milwaukee Brewers are playing the San Francisco Giants – AKA we’re totally going to the game! The best part about that is honestly how excited Missa is to go to the game – and getting to watch T explain some baseball to her maybe.
Be still my auntie heart.
Anyhow, I will be much less responsive in the next week because I will be overwhelmed by driving, baseball, and soaking up cuddles from my niblings… and then resting after we’re back.

 

Healing CBD Hemp 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.
I have to admit that I was skeptical about this product when I signed up to review it. If you read my writings often, I have a weird mix of beliefs and tend to shy away from natural things because, as I was growing up, that was all my family would do to help with my pain.
Turns out, multiple chronic pain issues don’t really respond to copper bracelets aside from turning wrists green… Anyway, it’s safe to say that I was looking for this to totally bomb.
But it surpassed anything I could have thought.
 
The first thing I used this for was actually an injury. I managed to cut open my fourth toe on my left foot to the point where I needed three stitches to hold it on and heal. My pinky toe on the same foot was also injured and broken… The fourth toe may be broken too, but since there is little that can be done for a toe, I didn’t ask for an x-ray.
I was told, after this accident, to make sure that I kept the area moist and clean. The day after, I began using this healing CBD lotion on the area to help with moisture and the whole clean thing.
It greatly reduced the pain that I was having, both from the injury itself and from stepping incorrectly with stitches.
There was even a point in the next week where I drove home during my lunch time after a meeting specifically to apply this lotion to my foot. Within a week, I was able to remove my stitches. The lotion continues to help the scar tissue and skin in the area improve.
In the meantime, the horrible dry skin that I have on my heels has greatly reduced. I am no longer catching skin on blankets, but have smooth feet! And that is still the case without having used the lotion for two days.
It has helped immensely with the pain from my fibromyalgia as well, whether this is in my hands or – the worse area right now – my neck.
The other night, I had a bout of painsomnia that was the most intense I’ve faced in a while. I ended up having to take a large amount of medication in addition to getting a back rub and applying this lotion to my neck and tailbone area.
It finally helped to break the painsomnia cycle.
If this lotion can help solve my icky, scratchy feet in addition to helping me heal from an injury and deal with my fibro pain in the midst of my biggest fibro flare in years?
I’m sold.
The CBD products from The Fay Farm are kind of badass. You can snag Healing Hemp in 2 oz or 8 oz.
Because I loved this product so much, I will be reviewing their Serenity CBD lotion coming soon, so stay tuned!
To learn more about The Fay Farms’ CBD products, please read this post from Julie Ryan at Counting My Spoons. You can also visit Project CBD’s Beginner’s Guide.

 

Honesty

Posted on by Grayson

Be honest with yourself about how you feel right now and embrace the feeling, without trying to make it go away. After a short while, reflect on what this feeling is trying to teach you, and if possible, act on what you’ve learned.

Try to peel back the layers of your emotions. There may be loneliness underneath anger, or there may be a feeling of inadequacy underneath jealousy.

Do you find it difficult to identify what you’re really feeling? If so, why do you think that is?

Do you allow yourself to fully feel your emotions, or do you usually try to make them go away as quickly as possible? If you chose the latter, why do you think you do this, and how does this negatively affect you?

It has been over a week since I left my job. I am struggling.
As I consider why I’m struggling, it has to do with a few things. The biggest is that I realize that I’ve been overdoing it for far too long.
Over the weekend, I had the pleasure of spending time with some of my old classmates at my alma mater with my favorite professors and discussing a religious studies book we’d picked to read together. This is the fifth time they’ve done this but the first time I could go due to other events, conferences, etc.
My friends and professors in the group are incredibly supportive. When I told them that I needed to create a schedule, I was thinking about needing to do so in order to get anything done. The three people I talked to instead all jumped to me needing one so that I didn’t overwork myself.
I haven’t seen most of these people in several years and yet they know me, they know how I am.
I have loved doing so much while I’ve had an opportunity to do so, but stepping back for a bit now is incredible – if only because I understand why I’ve been so exhausted for so long.
The other piece of this all is that I’m scared beyond measure.
Starting your own thing is tricky. This is a fairly spontaneous thing for a couple that dated for five years before an engagement to do! Sure, T is still working, but that means he has that much more pressure. We’re a team and we go through this as a team, you know?
I’m scared to fail. It would be sad not to try for just that, but I know that it’ll be difficult and hard work. I know that I will have to hustle a lot and do things that I’m not always good at in order to succeed.
Honestly? I’m almost more afraid to succeed.
Over the last week, I have been trying to push those feelings off because my immediate reaction is that feelings are bad – especially unhappy feelings.
I am Unikitty, after all.
I’m trying to not do this, though. I’m trying to feel my emotions so that I can process them now and not have to do a ton of therapy forever and ever. I love my therapist, but it’s hard to process after the fact all the time.
I’m scared because I’m not necessarily in control. I’m scared because the last time I wasn’t in control was when I lived with my abusive mother. Needless to say, that loss of control is one feeling I’m shit at dealing with.
Little K got through it, though. And she became a freaking badass.
I got this.