Why I’m Leaving Pillpack

Posted on by Grayson

About this time last year, I was ecstatic about sharing information regarding PillPack.
PillPack basically takes your medications and puts them in timed packets you can just rip off a roll and take with you easily. I was excited about this while traveling so that I didn’t have to take up a carry-on with my pill bottles.
At first, they were great with getting things set up. I enjoyed the freedom of being able to just rip a packet and go in order to travel more easily, etc.
Everything was going alright – until I needed to get a refill.
It took two weeks for them to get on top of the situation and, in the meantime, I was not updated on what was going on. I tried to send my specialist’s information several times, sometimes as a photo simply because I have mobility/typing issues at times. Five different people emailed me over five days. They had the nerve to think the photo version of my specialist’s information was a prescription and told me they could not accept it.
I groaned on social media and someone fixed it. I was cautious, but kept using them.
Then, recently, the situation happened again.
This time, only one person emailed me but I never heard back from them. It’s been like 2-3 weeks and I’ve now not received my allergy medication in the last shipment I got. It may not matter to them, but I’m choking on mucous over here.
Nope.
I just transferred my scripts to a local pharmacy and will be picking them up this week and abandoning PillPack. The irony was, during the transfer process, it only took an hour to get a reply from the same person verifying the transfer and canceling my account… when it took FIVE DAYS to get a reply from someone about one of my medications.
The biggest issue seems to be the utilization of a generic hello@pillpack.com email address for EVERYONE. This, combined with no singular person handling someone’s scripts, leads to mass confusion and disorganization.
They may be great for people who don’t have multiple chronic illnesses and need scripts on time, but for those of us in that category? Stay away.
Since I’m at Target all the time anyway, I’ll be utilizing the new CVS at the Target by our apartment. One of the things I’m already liking is that their app allows me to request refills, shows me which medications are currently filled for pick-up, and even allows me to control T’s scripts (note to self: have T sign up for a CVS account).
Hasta la pasta for now, PillPack. I hope that, one day, you can get the customer service issue pulled together for your clients. Personally, I don’t know that I’ll feel comfortable trying your services ever again.

 

How to act to have your doctor take your pain seriously (sarcastic post)

Posted on by Grayson

how to act to have your doctor take your pain seriously
Physicians are supposed to be able to navigate around emotional situations and decisions to solve issues and provide care for people. Sometimes the way we act can, apparently, still influence thoughts regarding our health. This is especially true for those of us dealing with chronic health issues and invisible disabilities.
 
This post is, in part, a sarcastic piece but also a piece in which we discuss the often ridiculous experiences patients have due to looks, actions, and assumptions.
 

1. Do not smile. Ever.

I went to my a former general practitioner knowing, essentially, that I had a dental abscess. I was looking for antibiotics to help treat the issue or some guidance on what to do. When I arrived, my doctor was less than compassionate. Because of the fact that I’m a bubbly person who is polite and smiles, I wasn’t taken seriously. He literally laughed in my face and said it was a pimple when my reaction upon him applying pressure to it (which, btw, is a no-no) wasn’t as horrible as he expected. I replied that I deal with very high numbers on the pain scale fairly often and that it’s pretty ridiculous to expect every person to react the same. Long story short: it took my (now-former) rheumatologist’s office seeing me two weeks later for someone to treat me for the abscess.
 
Tip: Always look pained while at the doctor for a pain-related issue.
 

2. Do not be fat.

I have so many stories I could share here. One friend had tonsillitis that a physician refused to do anything about, despite the obvious diagnosis, because she was overweight and that would eventually cause breathing issues. He also did no actual exam to look at the tonsils. Another friend was told that her rare neurological headache condition was caused by her weight. The most frightful thing about this situation is that the physician seen is one of the top experts in this type of condition. One of my favorite patient people was told that her abnormally heavy period (menorrhagia) would be solved by losing weight. She was told this at 15 and then was instructed on ways to lose weight, especially withholding food from herself, by the doctor. I could keep going, but then I might break my laptop out of anger.
 
Tip: Don’t be a part of 36% of Americans within the overweight or obese guidelines, even if that’s due to muscle or an issue related to your illness, disability, or pain.
 

3. Do not be poor.

Not only do those living in poverty have to deal with issues related to access to food and medical care in the first place, but when they do see a healthcare professional, they’re basically dismissed. One friend, also dealing with Still’s, was told that his abdominal pain was being caused by a horrible diet – a diet that one keeps when one is poor, by the way. In the end, his gallbladder had to be removed via emergency surgery with a long course of antibiotics. Another friend’s specialist asked if she had an exit strategy to get off of welfare. She’s not on ‘welfare’ as she works, but does receive some forms of public assistance. If you’re uninsured or underinsured, you can expect to not be fully treated or even fully evaluated for an issue… even one as fairly obvious as a staph infection in a patient with a history of them.
 
Tip: Pick yourself up by your bootstraps and stop being poor already.
 

4. Do not be a woman.

There is so much to say here – especially for those of us who fall into additional marginalized communities such as those with disability or people of color. If you suffer from any pain related to your reproductive organs, you may be misdiagnosed with sciatica, not even treated, or told to ‘suck it up’ because all women have pain ‘down there.’
 
Tip: Struggle to be more masculine to please HCPs.
 

5. Do not have a mental health issue (or fibromyalgia).

If you have a mental health issue, real or perceived, you can expect for misdiagnoses to follow you around. One of my favorite people in the entire world was being treated for some thyroid issues and depression with the thought that the vast majority of her issues were related to her depression. Fast forward almost ten years and she has been diagnosed FINALLY with Hashimoto’s Disease, an autoimmune condition. Fibromyalgia is often seen as a mental health issue due to the lack of belief by many physicians in the disease. This is despite the fact that it’s been proven to be a malfunction in the Central Nervous System. Many women are diagnosed with fibromyalgia to shut them up and give their perceived hypochondria a diagnosis.
 
Tip: Do not ever wind up with a controversial illness that has a stigma associated with it.
 

6. Do not dress up for your appointment.

I have learned the hard way that dressing nicely when I say I’m in pain is only beneficial is I have come straight from work. Doctors do tend to take other ‘professionals’ seriously. That said, if I dress up too much, then there are questions about how I would have the energy while in pain to do so. This isn’t the case anymore but has been in the past.
 
Tip: Rags are too dressed-down, but high heels are too dressed-up. Try sweatpants with a minimum of one hole but no more than two to illustrate that you’re not poor but you also hurt enough to not give a shit about looks.
 

7. Do not let your pain control you.

Be in enough pain for the pain to be more obvious, but not in enough pain that it alters how you talk to or interact with healthcare peeps. They’re trained to deal with these emotions. It should not be that hard for them to look past the emotions related with, say, a cluster headache in order to ask the right questions to provide the right treatment.
 
Tip: Learn to be a Vulcan.

 

Meditation Monday: How to Get Started

Posted on by Grayson

Last Monday, we talked about some of the benefits of meditation for chronic pain. Today, let’s take a look at ways to start a meditation practice.
First off, let’s talk about what meditation doesn’t have to involve:
  • Sitting on a pillow on the floor
  • Crossing your legs
  • Being 110% silent
  • Staying still
  • Closing your eyes
  • Certain hand movements
What does meditation involve?
  • Being mindful
  • Allowing thoughts to arise
  • Being non-judgmental to yourself
  • Rest and relaxation
  • Personal insight
  • Compassion
The most important thing in meditation is to have compassion for yourself. It can bring feelings and thoughts up that we don’t often experience – or, rather, let ourselves experience. In meditations that ask us to focus on the breath, for example, it can be easy to think about how we aren’t doing well if our attention drifts elsewhere.
Self-compassion is at the heart of meditation.
Getting comfortable is probably the second-most-important key to meditation. If you’re uncomfortable positionally, it’s difficult to focus. That said, meditation with chronic pain is totally a go, though it can be a little difficult with higher pain levels.

 

There is no right way to meditate, from using guided meditations like those on apps to sending compassion to others to focusing on rough events and more. Some things can help, though, like aiming for meditating at the same time each day. Meditation before sleep can be quite helpful, provided you choose a meditation that doesn’t wake you up too much. Some people feel like mantras or chants help, but these are also not required for meditation.
You do want to try to aim for a quiet place free of most distractions. You also want to make sure you’re not too full because you might fall asleep – though, that’s totally cool, too. Conversely, meditation when you’re hungry isn’t a great idea for focus, either.
When you’re first starting meditation, using apps can be incredibly helpful. I’ve talked a lot about much I enjoy Buddhify because of how helpful their guided meditations are so helpful. They are one of the best apps out there. Other apps include Headspace, Calm, and Stop, Breathe & Think. These are all available for Android and Apple products, which is awesome!
If apps aren’t your thing, get in a comfy, quiet place. If you want to achieve anything – specifically, to think of anything in particular – think of this just before meditating. For this first time, since it may be difficult, it’s helpful to set a timer. Just make sure it’s not a super alarming noise. Choosing a screamo song as the alarm to come out of meditation may ruin the mood.
Take some deep breaths and focus on those breaths. Count them in a way that’s comfortable for you – out loud or in your head. You can count the ins and outs or just the full cycle of breathing as one.
You will naturally think of things during this time. Don’t fret! Simply recognize your thought and let it pass, then begin to count your breath again. Feel free to move as your body requires. As we talked about last week, walking meditation is also super common.
When your timer goes off, address it. It is helpful if you use a timer on your phone that you can easily silence without moving too much.
Focus on your breath again and slowly come back to the world. If you are sitting or in bed, make sure that you get up slowly. Like a visit to a masseuse or a physical therapist, this time can be rejuvenating so take it slow.
It can be helpful to keep a journal or diary about your meditation. Think about how you felt this time went. Would you do something different? How are you feeling now? Did it help you to feel rejuvenated? Did it help with your pain?
Again, I definitely suggest Buddhify. They have a great section on pain and illness that help us to deal with the stories that we create about our pain, our self-esteem issues related to pain, and similar issues. It has completely helped me to change how I address and see my pain.
Did you try meditation as a result of this post? How did it go?

 

Join Me For #Rheumchat Next Week

Posted on by Grayson

Exciting news!
I’m co-hosting #Rheumchat next week with the American College of Rheumatology‘s Simple Tasks division.
If you pop over to the #Rheumchat site, you can read all the questions we’ll be discussing. You can also join the event’s Facebook page which will kindly remind you of the chat here.
What: #Rheumchat: Becoming an empowered patient
When: Thursday, August 18 at 1 pm Eastern (NYC) Time
How: Follow the tag #Rheumchat on Twitter (or click here) and make sure to use the tag #Rheumchat in any tweets you put out into the Twitterverse so others can see your thoughts!

 

An Update on The Invisible Disabilities Situation

Posted on by Grayson

Invisible Disability Project has this statement for our friends in the disabled community, activists, bloggers, and the press in response to the overwhelming support they’ve received from the disability community and allies regarding the Invisible Disabilities situation. The story has also been featured in The Daily Dot.
We mourn the loss of the Invisible Disability Project (IDP) Facebook community. The IDP Facebook community—disabled people and our allies—grew to 51,000+ members. Our community members mostly identify along the spectrum of disability, including “Invisible Disabilities®”* —broadly characterized as “hidden” or “non-visible” physical, emotional, or mental impairments.
Our community was administratively removed by Facebook on July 30, 2016, because of claims of trademark infringement filed by the “Invisible Disabilities® Association” for their trademark of “Invisible Disabilities®” (US Trademark Registration No. 4315808, April 2013).
While we mourn our community, we are also outraged by the silencing of disabled voices that this trademark commits upon all people who identify as having an “invisible disability”. Can you imagine the trademarking of racialized, gendered, sexualized, or classed identity categories?  “Invisible Disabilities®” is an identity category that belongs to people, not to a consumer brand.
At this time, we are certain of one organization shut down as the result of trademarking “Invisible Disabilities®”, but others are now coming forward. We must ask the questions: “How many activist organizations committed to disability justice will be shut down next as a result of a now-owned disability identity?” “How does trademarking disabled identities affect the world’s largest minority and the resources an already vulnerable population needs?” And, “Should an identity category ever be owned?”
 
A change.org petition calling for the cancellation of the trademark, “Invisible Disabilities®”, was created by Jane Doe Crips (a collective of many existing communities coming together to speak out against this injustice).
-The Invisible Disability Project Community
@EndInvisibility
 
*We have included the “®” symbol throughout this press release since this is an identity that we recognize belongs to “Invisible Disabilities® Association”, and fear that its omission could result in further repercussions.
 
 
Make sure to check out the IDP mission statement to learn more about them. As of this posting, facebook has reinstated the IDP facebook page. Go over and give it some love.
I have tried to reach out to some people on the Board of Directors at the IDA for comments but, despite supposedly welcoming comments, they refuse to respond. The same can be said for IDA in general as they have posted nothing at all anywhere regarding this situation and, in fact, have gone to the point of blocking people on social media who have questioned the trademark.
In speaking with some of the other activists on Twitter having conversations about this situation, we have all agreed on many things. For the sake of our identities, I have chosen not to reveal who was involved in these conversations.
  • IDA is cishet, heteronormative, and exclusionary to those who want to open up more conversation about sexuality and illness if that sexuality is non-heterosexual
  • They’re super white and not really opened to advancing the cause of our disabled friends of color, and this is represented in their board
  • This organization echoes white savior theory
  • IDA refuses to discuss mental health issues as invisible disabilities
  • On a personal note, up until recently I was friends with someone at the organization until she started using her account tied to them to spout white supremacist hatred, which completely goes against what our organizations should be working towards
  • Any organization that needs to block those who criticize them should not be running
    • The fact that the IDA does this is an example of infantilization or showcasing those of us with disabilities for funding – play nice, be the gracious, grateful pet we expect you to be, and you’ll be allowed in the dogpen, you may even get a squeaky toy– as long as we approve it first
  • How the board members on the IDA have handled this crisis situation (from a social media and brand management perspective) shows they’re not ready for the big time
  • What in the world gave the USPTO the right to allow an org to trademark/servicemark a term that’s been around since the early 1900s?
  • The ONLY reason to TM “invisible disabilities” is to stop other groups using it, including on educational & fundraising material and the fact that IDA has used this to shit on people they know are unlikely to have the means to fight back is incredulous
  • By listing blogs as part of services covered by TM, meaning they could get blogs BY us pulled down
  • This is a US trademark/servicemark, meaning that IDA cannot touch organizations abroad at least so thank goodness for that

 

There is a big lesson in this for those of us looking to help others – intersectionality and not being ableist and exclusionary to those you’re trying to ‘help’ with your services.

 

Are Our Flaws Really Negative?

Posted on by Grayson

 

Identify one to three of your biggest flaws and write below all the ways these have served you well to help you foster greater self-acceptance, in spite of your imperfection.

For example, your impatience may help you be persistent, enabling you to do well in your career; and your sensitivity may contribute to your power as a performer.

Did this help you feel any differently about your flaws? How might it affect your actions if you remembered these things going forward?

I will be the first to say that I have a lot of flaws… but I will also be the first to admit how important these flaws can be to my health and life.
I help people maybe a little bit too much.
I tend to be the first to be swindled out of money by people needing it – I used to be the person everyone borrowed money (or things) from and then they’d conveniently forget to pay me back. Because of that, I tend to only give money to people due to illness issues now. On the positive, this helps me to help others which I love doing. I also know that it really does make an impact to those I help.
I am stubborn.
Stubbornness is often seen as a flaw, but I also believe that it is a gift. It has helped me to protect myself from abusers, practice self-care, and get the right treatments and diagnoses.
I take no shit.
This could probably be a part, really, of being stubborn. I tend to give people only a few chances. If they are dismissive or negative to me about my illnesses or life, I drop them. While this means that I’ve lost friends – and, in turn, lost out on being able to participate in some cool events due to refusing to interact with certain people – it also means I’m being more true to myself. This helps me embrace myself more in addition to having other awesome people appreciate my truthiness and badassery.
 
What are some of your flaws? What are some positive things they’ve done in your life?
PS: Today we’re leaving for the JA Conference East in Philly. I will be slower to respond to things until Tuesday-ish. T is coming with me so we’re taking an extra few days to visit friends and family in the area – and celebrate our wedding-versary.

 

Experience: a poem by Gen

Posted on by Grayson

My sweet new friend Gen, a fellow JIA warrior, wanted to share this poem with everyone. It’s something that immediately struck a cord with me as I read it. It is strong in imagery, pulling the reader in, and general badassery.
__
“Experience”
I can still feel the tremors. My veins matched the purple décor of the curtains meant to shield an individual reality. I’d grown fond of the beeping machine reminding me my heart was still beating even if I couldn’t feel it. An empty room accommodated for an intended short stay, which had turned into what seemed as an eternal abyss. As I looked around, to what I didn’t know then would be a mirrored image of years to come, I naively grouped it all as one word- experience.
Beep beep. An experience I had not asked for yet was forced to face.
Perhaps there was a reason why I choose – experience. Everyone claims to have it, yet very few know its true connotation. Yet in that moment I had learned that experience isn’t a glamorous adjective of the untouched- but rather an undesired side effect of the brokenness. This particular experience had been the side effect of many years of wrong choices. The emptiness of the room reminded me that those who I had chosen to experience life with, did not share this life experience with me.
Beep beep – you are still alive the machine reminded me.
Experienced doctors faced with an experiment. If experience did indeed make you bright- why did the room seem dulled by uncertainty? Clouded by my choices, enlightened by my mistakes. The people I defended so strongly disproved themselves so rapidly- Experience. The pain I assured I could not handle numbed my discomfort- Experience. The young girl, aged by experience. I can still feel the tremors.
Beep beep- you are still alive the machine reminded me.
Beep beep- echoes in the empty room whispered “This is the cost of experience”

 

Shame on the Invisible Disabilities Association #notabrand

Posted on by Grayson
I saw some discussion regarding the Invisible Disabilities Association on Twitter and decided to take a look.
Turns out that the IDA trademarked the term ‘invisible disabilities.’ Wayne Connell has somehow decided that he owns the term invisible disabilities. This is not true. Since the use of that term goes back to the early 1900s, I’m not quite sure how the US Patent Office approved that.
Once they did that, they got the Invisible Disability Project kicked off Facebook for trademark violation after sending IDP a cease and desist letter.
So far, the IDA Twitter page has not actually responded to people but began to block those of us speaking out about this subject and asking for reasoning or clarification. Even board members are getting in on things.
How sweet.
We cannot allow this to continue. How long will it be until the IDA decides to come after those of us who blog or write about our invisible disabilities? How long until they decide those of us who make our living off of work related to our invisible disabilities?
We cannot allow this to continue. Please sign this petition!

 

Meditation Monday: Meditation Can Help Chronic Pain

Posted on by Grayson

I talk an awful lot about the benefits of meditation for my chronic pain. I thought it was about time to talk a little more about the science behind why I feel that way – aside from meditation being pretty badass.
First, we need some definitions…
  • Chronic pain: any pain lasting for more than twelve weeks
  • Meditation: a variety of mindfulness, personal focus, and introspection techniques
    • It’s important to note that, since there is such a variety in meditation as a whole, that one definition really doesn’t encapsulate much BUT some types of meditation involve:
      • Deep breathing
      • Guided imagery
      • Walking
      • Yoga
      • Vocalizations or chanting
      • Scanning the body
What can meditation do?

Lower sensitivity to pain? What?

“Meditation teaches patients how to react to the pain,” Zeiden said. “People are less inclined to have the ‘Ouch’ reaction, then they are able to control the emotional reaction to pain.” He explained that the meditator learns while sitting on the cushion that pain is fleeting and doesn’t deserve such a strong emotional reaction. (source)

This all has been shown to be especially true in chronic back pain.
I’ve been meditating on and off since I was about twelve. There was a Cosmo article I read about how yoga and meditation were good for our minds and bodies, so I got into it. There was even a point where I could do headstands up against the wall.
If only selfies had been a thing at the time…
I definitely fell off the wagon of meditation several times. Back in 2012, when Laura passed away, I got back on the wagon for a while… until I didn’t. Towards the beginning of 2015, though, I found the Buddhify app and fell back into the wagon hard – so much so that the creator of Buddhify, Rohan Gunatillake, interviewed me for his book, This Is Happening:

Mindfulness also shows me that even the hardest pain of the most difficult emotion is just a temporary thing. Noticing that change has made a massive difference. The pain is still there but now I can even be grateful for it. I now have the self-awareness to notice any discomfort and itching before it becomes full-blown pain. That’s quite a change from when all I could do was be angry and resentful.

Mindfulness has really helped improve my relationships which previous had been quite difficult. I guess that working on being compassionate to myself means that I’m able to be more compassionate to others. That’s also how I see all the blogging I do. Sharing my own story and struggles with others through blogging and other social media is an expression of my compassion. It’s part of my practice. (122)

One of the things I love from this chapter – and, indeed, every interaction I have with Rohan – is how very appreciative and caring he was about some of my thoughts:

I’ve met a lot of mindfulness experts in my time. But as she is someone who has lived with pain for the majority of her life, I’ve never heard as clear or as real an articulation of how mindfulness helps us transform our experience of the difficult as the one Kirsten shared with me. (122)

/SWOON/
One of my favorite things about meditation is just how restful and rejuvenated I feel when I take part in it. While it can be difficult at times, Buddhify really helps me to dive in even with difficult emotions.
I really enjoy meditations that allow me to remove the narrative about my pain. One of the Buddhify tracks does this, requiring us to focus on the actual pain instead of the tangents our minds can often create – thinking about what the pain is (size, sensation, location) versus the panic it brings (I can’t go to work tomorrow if I still hurt like this, etc).
Don’t already have a meditation practice in place? Good news – meditation has been shown to help even beginners, so get cracking!
Next week, we’ll look at ways to get started on meditation.

 

The latest from the rheumy

Posted on by Grayson

The Friday before Oreo passed away, I had a big rheumy appointment. I mean, I thought it was going to be big at least.
Appts with colds = ick btw
Maybe even Michael Bay explosions big.
In 2010, I was in the worst flare I’ve ever experienced. My sed rate has certainly had its ups and downs – as a child, I recall closer to 100 but, unfortunately, my medical records were murdered, so…
I thought that we might have the discussion of the ‘R-word’ at my appointment – remission. But, since my fibromyalgia is still flaring like a bitch, that was the subject of our conversation instead. My fibro is heavily affecting my neck, shoulders, and upper back. Since I am struggling to get relief, we are going to try trigger point injections and acupuncture which, thankfully, are offered under my insurance.
I’m nervous at the prospect of the trigger point injections as I know others, like my sweet friend Kenzie, have had them and did not necessarily enjoy the process. We handle pain well, but damn y’all, I’m nervous. I am excited at the prospect of pain relief at least.
My appointment to even be evaluated isn’t until after the JA Conference East in Philly so the latter half of August. I think I’ll try to get a massage before that to see if that will help for while I travel to and from Philly. Luckily, T will be coming with me so that should help with some things. After all, our anniversary is the Tuesday after the conference, so it works.
I really want to get to the point where I’m not sitting here concerned about my fibro interfering with my life like it has lately. I want to feel as amazing as my labs look.