WEGO Health Activist Awards: I’m Nominated

Posted on by Grayson

purple box-shaped graphic with a light blue scalloped line inside surrounding a B&W picture of a femme writing in a notebook with a pen; over the photo says 'WEGO Health Activist Awards: I'm Nominated' in yellow and the bottom of the photo says 'not standing still's disease' in white text
I am excited to announce that I have been nominated for a ton of categories in the 6th Annual WEGO Health Awards – Best Kept Secret, Patient Leader Hero, Best in Show: Blog, and Advocating for Another.
WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network.
The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often do so without recognition.
I’ll be honest – I’m not sure who y’all are who nominated me, but you’re beautiful. It’s been a rough couple of years and I’m not always sure anyone is listening, watching, or paying attention to the work I’m doing. Don’t get me wrong – I’m not doing it for accolades, but it’s nice to get a pat on the back once in a while at the very least.
purple-tinted photo of a person's hand giving a thumbs up on the right; on the left, a golden outlined purple text box says "WEGOHealth Awards" with smaller orange text below saying "endorse me today!"
This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC October 23rd and 24th, 2017. How cool is that? It’s a big deal and would be a great thing for any of us to be able to attend. If you’d like more information about the summit, you can learn more here.
I’m now looking to my incredibly supportive network to help endorse me for this award. There are two easy ways to endorse that only take seconds of your time!
1) You can click on my endorsement badges located to your right on the sidebar
2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo
If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for this award. You can continue to nominate and endorse your favorite health activists until September 1st.

 

Check Yourself Before You Wreck Yourself

Posted on by Grayson

'check yourself before you wreck yourself' in yellow; 'not standing still's disease' in white below that; set against a blue filter over a photo of my feet in black flip flops against a brown clinic floor
I saw the rheumy today as planned. I was a little concerned that she would chastise me for not adhering to a Mediterranean diet.
To be honest, I was more concerned that she would be upset that I wasn’t really eating due to a lack of appetite, but I forget how awesome she is sometimes.
“It’s okay to just snack. Who says you need full meals all day? Just get something in there.”
That eased a lot of concern I had around my diet stuff. We talked about my shoulder, too, and how I need to let her know if it’s still bad by the end of the month. She’ll plan on injecting it to help stop it from going full frozen shoulder again.
Otherwise, I don’t have to see her again until January… though, knowing my body, I’ll need a more urgent visit sometime in the fall at the very least.
me in a reddish-purpleish shirt in front of a brown clinic wall with boring art behind me; a snapchat filter has turned me into a unicorn with a white horn, white ears, and white glasses, as well as adding a bit of rainbow to various parts of the photo
I’ve had a really busy schedule this week – so busy that I’ve been ignoring pals to do self-care. It makes me feel rotten, but I also needed to do it. I had a boudoir shoot yesterday (which was SO FUN!) and, while prepping for that, found a scary mole change on my pubis.
While I talk about this kind of stuff more at Chronic Sex, it’s worth mentioning here, too – check things checked out.
I’ve always had a mole there. Hell, when I had chicken pox, one grew under the mole! I honestly thought it was a cute thing – until I looked down while grooming and saw that the pinprick mole had turned into something the size of the end of my pinky.
*Cue internal screaming from a sexuality educator*
I decided that it would be good to call my primary care doc’s office to see when I could get in. There’s usually a fairly long wait and, while this didn’t hurt, I wanted to try to get there as soon as I could. It turned out that she had a midday appointment today so I made my way from one appointment to another.
It turns out that I have Seborrheic Keratosis, which is just a fancy term for a benign (but scary-looking-to-newbies) skin growth. It can itch and get waxy feeling, so I have to be careful not to scratch it off!
While I was there, I brought up some pelvic pain that’s woken me up in the middle of the night. The pain is intense and often feels similar to the spasms I get in my back, but they’re in my bladder or somewhere in my reproductive system.
Right now, the thought is this is indeed bladder spasms, but we want to make sure there are no other issues going on. We did an impromptu pelvic exam today as well as tests for a variety of things – sexually transmitted infections, bacterial growth, etc. I also go for a transvaginal ultrasound on the 24th to rule out any growths or cancer within my business.
It feels weird to be a sexuality educator with ‘pelvic pain’ listed as a health issue in her chart. That said, I’m glad I brought this up today. It’s been an off-and-on thing for a while and, combined with the skin thing, was enough to scare me at the very least.
Get yourself checked out anytime you think something isn’t right. I would never have known my giant mark was Seborrheic Keratosis otherwise. Like the article I linked to above states, it’s scary for people to see this randomly and is often mistaken for a cancerous growth.

 

The Fight Ableism Prayer

Posted on by Grayson

Sometimes I get really tired in my fight against ableism.
It’s hard especially when our government makes it clear they don’t care whether we live or die. One of the biggest ways they show this isn’t just with the AHCA, but with how we are treated when we try to stand up for ourselves.
In the fight against bigotry, we may lose sight of why this matters and why we need to fight for ourselves and our future. People without chronic conditions or disabilities generally aren’t prepared to hear about the issues we face, especially because equality can feel like discrimination when you have privilege.
I developed the prayer below based on the Lord’s Prayer to help reinforce my inner strength to fight the ableds. I hope it helps you, too.
O, universe, all around us,
Help me fight the ableds.
Help them to listen more than they talk.
Let them learn how to be allies,
instead of harming, assuming, and speaking for us.
Give us this day our daily meds, physical therapy, and grounding exercises.
Help oppressors understand our tone,
As we don’t tone police ableds and other perpetrators of oppression.
Lead us not towards ableism and harm in our communities,
But help us identify the -isms and -misias therein.
Disability is a naturally occurring state.
The future will be accessible.
Nothing about us without us.

 

Mental Health and Chronic Pain in Childhood

Posted on by Grayson

Before I start this post, let me mention a few things – there’s a lot of talk of dying early, suicide, abuse, etc, in this post. I am fine – simply describing much of how growing up with chronic pain conditions can be and, indeed, was for me.
One of the things that I’ve struggled with, starting as a child all the way up to today, is the combination of chronic pain and death. Indeed, it’s one of the big issues in the chronic illness world – we often fail to address how mental health can play with chronic illness and pain.
About a year ago, I came across the Tumblr post below:
Tumblr post from user Bakrua (black text on a white background): Being mentally ill + suicidal at a young age (before 18) is. strange, because you grow up with this idea that one day you'll finally snap, turn off, be brave enough to kill yourself, so you don't really plan-for the future. adulthood - further life, it isn't for you, nor do you feel included within the future of it. it isn't.. it isn't part of your life plan" new paragraph: "and then before you know it you're 18 and you're an adult but you never thought you'd get this far and sure it's great that you're still alive you guess but also. you feel so alone + lost in a world you never expected or planned to be a part of."
It really hit home for me.
When I was young and we didn’t know what was going on with me, I made my peace. I was sure that I was going to die soon and I was somehow less scared of it than I am now.
I think I was also more at peace with the idea that I was in no way in control of my destiny. I certainly wasn’t a godly child but understood more about how my physical body is more in control than my brain. Obviously, I would have been sad about passing away so young. I would’ve missed all the time I’ve gotten to spend with my sister, the people I’ve come to know, and all the animals I’ve loved and taken care of.
Since I was so prepared to die early, I didn’t really plan for later in life. Even after the SJIA diagnosis, – I knew that this was a scary disease from what I had read as a seven-year-old with a dictionary beside me. Hell, I figured that if my SJIA didn’t get me that my abusive mother somehow would. She certainly was good at pushing buttons to help people make decisions that weren’t the best for their health. But that’s a story for a different time.
I knew that other people didn’t deal with exactly what I did. Still, I felt as though I was handling this very poorly compared to how others might. It’s a very common thing for kids with chronic pain to think. A few years ago, I read a book that discussed fibromyalgia in children and nearly every kid expressed being ‘bad’ at handling pain they thought everyone dealt with.
It’s one of those initial ways we experience ableism – we think we do poorly at handling issues.
In reality, just like with people of any age, children are just trying to make sense of what’s going on in their bodies and their lives. We can’t control what’s happening to us in a lot of ways, both because of our ages and our illnesses. Many adults don’t take what we say seriously, either, which can further issues like depression – especially if we’re isolated and abused in our youth as I was.
Now I’m nearing 30 and I have no idea what I’m doing. Sure, some say that’s what being an adult is like, but not in the way I feel it. I have few plans because I just never thought I’d get to be this old. Because of T’s struggles with depression, he’s in the same boat. It’s not easy for either of us – and can cause issues within our relationship.
 
See, the way I grew up affects everything in my life – how I handle my health fun, how I treat others, relationships, etc.
If you have a child who deals with chronic illness, it’s imperative that they begin to see a therapist to work out their feelings. They need validation outside of the family as well as a safe space to vent. They also are going to need a lot more help than any parents, no matter how awesome, can give them. A therapist can be a wonderful person for further mental health referrals.
If you live with chronic illness, whether diagnosed in your childhood or later in life, please see a therapist or other mental health professional. It can mean the difference between life and death.

 

Review: Liberty Lixir 1000 mg CBD Tincture

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, all opinions in this review remain my own and I was in no way influenced by the company.
Today I’ll be reviewing the Liberty Lixir Ultra 1000 mg tincture from Liberty Lotion.
This tincture is an isolate which means that it’s gone through a very rigorous process to remove anything other than CBD from the oil. Like with just about every CBD-only product, there is no THC in this.
According to the Liberty Lotion website, each pump from the bottle gives you close to 7 mg of CBD oil – 6.7 mg to be exact. They talk about how the most effective dosage is different for everyone but mention that around 3-5 pumps every 4-6 hours seem to be about the average.
What you do is pump the oil under your tongue and wait as long as you can for it to absorb. In addition to CBD oil, this contains Vitamin E and coconut oil. I don’t really like the taste of coconut oil, so I’m not always able to wait the recommended ~60 seconds. It also means I don’t necessarily love to swallow the remainder of the oil that doesn’t absorb.
I remedied this by following up the oil with a non-water beverage. The oil you swallow has to travel through your GI tract anyway and it likely won’t give too much benefit… so I’m not worried about following it with soda or anything else really.
Okay, with all that out of the way… how did this work?
Generally, when I’m dealing with a fibromyalgia flare-up like I have recently, I can’t even wear clothing. I sit in a fleece blanket on our soft couch and try to make it through the day. I’m lucky if I can shower maybe once a week, depending on how long this flare-up goes. Everything hurts from head hair to pubic hair to anything touching my skin. I’m unable to sleep so I’m up at all kinds of weird hours instead of sleeping in bed with my husband.
I really freaking hate not sleeping by T when we’re both home. It’s something that is so out of my control and something that my diseases dictate. I always worry about resentment or loneliness. For a while, I just couldn’t even try to sleep in our old bed. I would come in and read him a story or listen to a podcast and then head back to the couch once he was asleep.
After starting this tincture, though, I don’t want to go anywhere without it.
I have slept in my bed next to T every single night. I’m crying writing this because it’s been a long time since I made it through a week sleeping in our bed.
The fact that I’ve been able to sleep at all has contributed to this flare being less severe than those I usually experience.
On top of that, though, I’m being able to go do things. Maybe wearing clothes still isn’t the most comfortable, depending on the dose I’ve used, but I’m able to do it instead of breaking down in pain and crying. I’ve been able to keep lunch dates with friends and plan others because I have some semblance of a life back.
CBD, in general, is something that I love, but I have not ever tried something that impacted my life as much as Liberty Lixir.
I mean, I’m crying writing this right now. I have control over more of my life than I’ve had for years. It’s no surprise that this, then, is pretty much my favorite product I’ve ever tried – EVER.
Oh, and did I mention they also have a reward system? There are so many things you can do to earn rewards, too!
You can redeem 500 points for $10 off, 1000 for $25, and 2500 for $75.
I’ve already ordered a few of their topical products and am super excited to try them out soon! I’ll definitely report back.
Want to snag something from Liberty Lotion for yourself? If you use code ‘NSSD’ you can save 10% off your order at Liberty Lotion!
 

 

Review: Premier Biomedical CBD Patch

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, all opinions in this review remain my own and I was in no way influenced by the company.
Today I am reviewing a CBD pain patch from Premier Biomedical Pain Management Solutions.
In addition to CBD oil (which, for this product, is derived from hemp), the patch includes coconut oil, lecithin, aloe vera, almond oil, shea butter, and various extracts or essential oils.
The patch is latex-free which my skin appreciated! It is similar in look to a band-aid, with the actual CBD contained in a reservoir where the cottony part of the band-aid would be. The reservoir contains 48 mg of CBD oil that gets released over a longer period of time – up to 96 hours!
Via Premier Biomedical
The corners of the patch are rounded which I appreciated a lot. It made it a lot less likely to catch on my clothing or try to pull off in my sleep. It was also water resistant so I was able to shower with it on!
The first thing I noticed when opening up the pouch was the smell. It was pleasantly floral, but not too much so – probably from the eucalyptus, sage, and citrus oils. The next thing was how the CBD oil was reddish in color because of the red palm oil used.
I was really excited about trying this out. I use CBD oil a lot in lotions, so this was a good next step for me. I had a fibromyalgia flare-up and thought it would be a good time to try the patch out… That may not have been the best idea, simply because I generally don’t handle things on my skin well when I’m flaring.
That was my own fault.
Since my left shoulder and neck are my worst spots right now – and you should place the patch as close to the source of the pain as possible – I had T put this on a trigger point about halfway between the two.
My fibromyalgia pain was untouched. It hardly responds to much and, again, I should’ve picked a better time to try this patch.
That said, my neck and shoulder pain has been fairly constant over the last 13+ months. Wearing the patch over the span of a few days, though, has really helped clear it up. Even now, a few days later, the pain isn’t nearly as bad. It also isn’t as constant. It isn’t here when I wake up.
It’s so weird – good weird, obviously!
We’ve tried a lot for this pain – other patches, gels, heat, ice, massage, trigger point injections, acupuncture. Nothing has worked as well as this patch has. Acupuncture is the only thing that comes close, and that isn’t necessarily very comfortable.
The other thing is my acupuncture isn’t covered by insurance. That means we have to pay over $80 a visit for me to get that. This patch is only $20. Four patches with shipping and I’m saving a bit of money and getting better pain relief.
I definitely recommend this patch, especially because I’ve been able to be so much more active lately as a result.
Interested in snagging your own? Head over to Premier Biomedical!

 

Productivity

Posted on by Grayson

T is away for the weekend, which means I’m working on getting a lot of things done around the house. It was already my plan but definitely became a necessity after the fibro flare I was dealing with earlier this month.
I’ve been behind on so much from cleaning to putting things away and more. It’s really hard to do those kinds of things if your body doesn’t want to even wear clothes, ya know?
I’ve been keeping some of my cleaning plans under wraps – AKA not telling T everything I plan to accomplish – because I don’t know if I’ll be able to do it all. If I don’t share those things, maybe I won’t feel as guilty if I don’t accomplish them.
One of the big things on the list was to pay the $650+ in medical bills I had sitting around.
[gradient photo from yellow (top) to purple (bottom) of me with the back of my hand to my mouth and looking away from the camera]
So many of those bills are from trying to figure out what these new symptoms are from. It stings to have to pay over $400 alone for my MRI – a test which didn’t find anything. Don’t get me wrong – I’m glad that there isn’t any obvious brain and neck stuff, but I want answers.
I wish that we knew what was wrong – then, I would at least feel justified in paying so much.
Oh well. Off to soak my woes in guinea pig laundry, dishes, and cool things.

 

Does Your Doctor Get Kickbacks?

Posted on by Grayson

Today, I want to share about this site called Open Payments. It is a badass “federally run transparency program that collects information about these financial relationships” to make it free and easy to find.
Here’s why this is important – doctors who get kickbacks or have relationships with organizations are more likely to prescribe medications from certain pharma brands, etc. This doesn’t necessarily imply improper relations. I’m more likely, for example, to recommend products when I’ve had more interactions with their brands.
Still, this is an important issue to note. As patients seeing physicians who aren’t infallible, we need this information. One of my former doctors is on the list and, while I can’t see what ties there were, it explains some of the interactions we had.
Make sure to visit Open Payments and see what your doc’s history of involvement with health care organizations like pharma is. Note that the data is currently available up to 2015.

 

#HealtheVoices17 Recap

Posted on by Grayson

HealtheVoices 17 was a few weeks ago and I’m still processing it.
It was awesome.
My pal Kenzie and I drove down together. It made the drive even better to have such great company!
It also made it easier to drag all my meds along!
Right as we got to the hotel, I hustled upstairs to meet with my fellow panel members for our stigma panel prep session. From there, I ran up and changed for dinner with the Joint Decisions crew! It was a great night.
My first major order of business the next day was obviously to snag my Do-Rite Donuts!
The first order of business was to meet up and spend time together for breakfast. We heard from Caroline Pavis and Rhonda Waters, two of my favorite people in the entire world.
Rhonda reminded us of how we’re like redwood trees. Did you know these trees have very shallow roots, despite being incredibly tall? The secret to their long-lasting strength is that those shallow roots are all connected.
Just like us.
It’s some powerful stuff.
C/O Daniel Garza
In the afternoon, me and the other cuties up above got together for our panel on stigma. We talked about stigma in the media, from doctors, and even from our fellow patients.
Next up, we heard from Dr. Tiffany Taft on some much-needed self-care stuff.
We talked a lot about how to change the way we talk to ourselves and ways to focus on ourselves – at least some of the time.
I wish we had a whole conference on stigma and self-care alone. It’s so needed.
That evening, we ate delicious food together and heard from Luke Escombe – one of the most hilarious people I’ve ever met. He also started off our open mic night! This was the first year they’ve done this and it was a hit.
Unfortunately, my capstone was due the same weekend as the conference, so I spent a lot of the nights working on my paper instead of spending time with friends.
Saturday was full of multiple sessions. My two favorite were Josh Robbins‘ session on ‘Here’s How to Get Video Done’ and Heather Gabel‘s ‘Creating Credible, Strong Content – How to Interpret and Share Scientific Data with Your Audiences.’
I popped down to do a few interviews.
And then we all went out for dinner at Wildfire – which was delicious!
Sunday went by quickly but was full of coming together to say goodbye.
The biggest news of the day was that Janssen started the HealtheVoices Impact Fund. The $30,000 fund is available for individual patients to accomplish their advocacy goals. Yes, before you ask, I already have some ideas in the works.
Mwahaha.
We talked about how to take care of each other and ourselves better. Josh even made us all sign cards saying we’d do that!
This is part of why I love HealtheVoices – being able to focus on our self-care and the connections we make.
It’s so great to connect with other health activists and spend time with dear friends.
I’m so grateful to Janssen and Johnson & Johnson for hosting this conference as well as the various supporters such as Wisdo and Healthline.
My Top 5 Takeaways:
1. It’s okay to take some time for myself.
2. We’re not alone in our fight – ask for help.
3. It’s easier to do more when we can support each other and feel supported.
4. I need to learn how to create some boundaries cause I don’t have them.
5. When you do health activism, you’re bound to have people who disagree with or hate you… but you’re also bound to have people who admire you and consider you their hero. They’re the ones to listen to.
PS: Janssen is paying my travel expenses for this conference. All thoughts and opinions expressed here or on social media are my own and do not reflect the thoughts or opinions of Janssen or Johnson and Johnson. 

 

We Disability Rights Activists Knew the GOP Wanted Us Dead Already

Posted on by Grayson

Yesterday, the House passed their bullshit health bill.
This bill targets special education, turns sexual assault and C-sections into pre-existing conditions, and affects even those on employer-based plans. It affects the LGBT+ community even more. They’ve even had the audacity to exclude themselves. The only potential upside is that at least the Senate won’t be voting on this specific bill.
Still, it’s what we disability rights activists have been saying for a long time – that eugenics-related bills have been passed to harm us for eons. The Nazis practiced and ‘perfected’ their Holocaust shit on us. In the 90’s – yes, the 1990’s – we had to harm ourselves in public by crawling on Washington to get any protections.
This is another in a long line. And another in a long line that could’ve been avoided had people been listening to us to begin with… but that’s another story.
As someone who has a whole shit ton to lose from this bill, I’m pissed. But I’m fired up and ready to go. I hope you are, too, cause it’s gonna take all of us to fight this.
Here’s how:
Talk about shit on social media. Use hashtags like #healthhasnoparty #iamapreexistingcondition or #ifidiefrommypreexistingcondition. Tag your representatives, local news outlets, and major news outlets.
Make videos.
Write letters to the editor. Get on the news.
Contact your Senators. Do it today. Do it tomorrow and every single day, right up to the vote.
Remember that you can text RESIST to 50409 to utilize Resist Bot, which will compile your thoughts into a fax. This is far more likely to be read than email – and easier for many of us than calling.
After you contact each day, take some time to lick your wounds. We all have them right now – and we all need to take care of ourselves.