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.

 

May: The Ultimate Awareness Month

Posted on by Grayson
May 1st marks the start of an awareness month practically tailor made for me – asthma & allergies, arthritis, mental health, and fibromyalgia.
My asthma is, honestly, getting worse. When I eat or laugh or sneeze, I have a hard time getting my breath back to normal… which is probably a sign that I need to use my inhaler more. My allergies always pick up this time of year, though tend to affect my asthma more than causing problems on their own.
My arthritis is steady. I’ve come a long way in two years, thanks to my daily injection and other medications. When the weather is rainy and humidity is high, though, I’m reminded of my limitations – especially at night, when pain relief just won’t come. My hands, neck, hips, and knees are furious.
Mentally, I’m in a good place. Depression and anxiety are staying at bay for the most part, thanks to all the things I’m doing. My PTSD is another story, but that’s alright. With April being my birthday month and May being the month I cut contact with Mother (and having Mother’s Day in it), I know this won’t be an easy time of year.
My fibromyalgia is doing okay right now. I have had fewer skin-aggravating symptoms like allodynia, which is that thing when normal sensations like clothing on your skin or holding hands can feel excruciatingly painful. Today, that’s a thing that’s started and is spreading. I’ll push through cause I have some errands to run, but I’ll be glad when I’m home and can get naked as quickly as possible. I wanted to shower today, but I don’t know that I’ll be able to – the water feels like daggers on allodynia-affected skin.
I always feel conflicted when people say things like “don’t let your disease define you.” My conditions all do – they’ve defined my life from a very young age. They’ve also given me a level of appreciation and compassion that isn’t always a thing for abled people. I’ve gotten to do amazing things, meet the best people, and enact some real change – things that I don’t know I’d be interested in if I was okay.

 

Off to Healthevoices 2017

Posted on by Grayson
I’m heading to Chicago for the weekend for HealtheVoices 2017!
Chicago is one of my favorite places, so I’m excited to spend some time there with some of my favorite health activists in the entire world. It will also be great to see many of my Joint Decisions friends for the first time since our October summit.
Since I’m at the end of my master’s capstone writing, I may not get a recap up as quickly as I did last year. Still, I’m excited to be able to share things I learn with everyone else via the interwebs.
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 & Johnson. 
 
And, yes, in case you were wondering, I will be binging on Do-Rite Donuts again.

 

How 23 And Me Helped Fill in the Blanks in My Ancestry

Posted on by Grayson
Growing up, I was always told I was Italian. Knowing what kinds of things I’ve been lied to about growing up, I decided I might as well try to figure that out for myself.
So, I snagged a 23 And Me kit and I’m not exactly Italian.
I knew that part of my ancestry on my mother’s side had a collection of the UK and France, but I was unaware of the Scandinavian connection – something that’s likely on my dad’s side. He didn’t know his own father and so knows little of the genetics of his side of the family.
Now I finally know more about my background without having to make guesses or rely on pesky ‘alternative facts’ I was raised on. I know what my background is and I can truly start investigating more about my family’s history, something I’ve wanted for my entire life.
I also apparently have a high number of Neanderthal variants (one of which is associated with my height). From a health standpoint, they did not find me having any carrier status of the conditions they tested, though they do not test all variants of these conditions.
I move a lot during my sleep and additionally get less deep sleep – something 23 And Me picked up on easily. And they did say that I was predisposed to weigh more.
So that’s fun.
The rest of what they tested or showed was stuff that is relevant to the present – what tastes I’m likely to prefer, eye color, freckles, etc. There are some things that weren’t exactly correct – they say I’m likely to have lighter hair or consume less caffeine, for example.
Why 23 And Me?
 
One of the things that drew me to 23 And Me over other ancestry tests was that there was the health component. There was another major reason I chose them, though – research.
They have done a lot of research on chronic illnesses from IBD to lupus and more. If and when they start to do research related to conditions I have, I’ll be able to provide them a ton of already-processed data.
If you’d like to try 23 And Me, click here to use my referral link.

 

Help Me, House – You’re My Only Hope

Posted on by Grayson
Since all my tests thus far have come back negative, I’ve been picking my own brain trying to figure out what in the hell I’m experiencing.
I have great doctors who are willing to help me figure out what’s going on, but it takes so much time and the not-knowing is almost worse than the knowing – at least with knowing comes plans and treatments and the like.
Up until now, I’ve felt very focused on a few differential diagnoses that I found and felt certain these matched. Tests so far have ruled these out (ish – none of these tests is 100% conclusive so there’s that).
It made me wish House, MD was real.
He would greet me and sit with me as we went over my family history, personal health history, and tests done so far. He’d made crude jokes that I’d laugh at because he’s handsome and – well, you get the picture.
Most of all, I wanted his team working on their whiteboard of symptoms, examining things and ruling things out simply by how I’m presenting.
It’s silly to be so dependent, at least in thought, on this fictional character. I mean, House doesn’t exist. This can’t ever happen… right?
Well… On Monday, I bought myself a whiteboard and began listing what I could on there.
The differential diagnoses list has grown in size, thanks to pals across social media offering their thoughts and ideas. Together, we’ve even found some that fit better than those listed here.
It’s also culminated in an ‘asks’ list for me to take back to my healthcare team, from easy stuff like additional blood work to more rigorous tests to even a full spinal MRI and spinal tap. I really would like it to not get to the spinal tap level.
This pain and weirdness is already at 11, know what I mean?
 
Do you have thoughts on what this could be? Here are some things I ask you to keep in mind:
These symptoms have been off and on since 2012, happening maybe three hours here (when overheated) and two hours there but not consistently like it happens at present. This rules out some things like guillain-barré syndrome that would’ve had me kick the bucket in five years’ time.
I have a familial history of autoimmune and autoinflammatory diseases.
My genetic makeup (courtesy of 23andme because of familiar record issues) is heavily European:
  • 58.1% British Isles (British, Scotish, Irish, Welsh)
  • 10% Scandanavian
  • 6.5% French and German
  • 23.8% Broadly Northwestern European
  • 1.4% Broadly European
  • 0.01% North African and Middle Eastern

 

I do not have Ashkenazi heritage which rules out a number of conditions.
There may be symptoms I am having that are not listed on the board as they overlap with other conditions I am currently diagnosed with (fibromyalgia, systemic JIA, etc). This is not a complete picture of my health.