Category: theme days

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?

 

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.

 

Top 5 patient rules you should break

Posted on by Grayson
Despite working on leaving behind our paternalistic past, some of the things that are hardest to change in healthcare pertain to how patients are supposed to act.
I’m here to tell you as a fellow patient and health activist: It’s okay to break these seemingly-unchanging rules.
1. Don’t question.
There is an epidemic among patients, something that we have the power to attack and change – silence.
Many patients, yours truly occasionally included, struggle with the ability to speak up to someone who seems to be more educated on medical issues than ourselves.
We have to start remembering, though, that we are experts in our bodies and our illnesses. Even if you don’t know the mechanisms behind what your illness entails, you know something that your physicians don’t – how your illness truly affects your quality of life.
It’s time that we start speaking up when we have a difference of opinion in the physician’s office.
2. Remember that the physician knows much more than you.
In order to fight rule one, we have to start learning about the mechanisms, medications, and complications associated with our illnesses.
If you have the ability to, head to a library and pick up (legitimate) books on your illnesses. Go to the nearest medical school or contact a provider/professor there to ask about learning more. Get in touch with non-profit organizations to learn what resources and information they can offer to help you in your journey.
We have to become our own advocates in order to get the care we deserve.
3. Don’t bring in outside information.
Many physicians are busy and may sneer at the idea of a patient bringing in materials for them to look over. Others won’t look at information such as sleep or fitness trackers.
Some even refuse to look at pictures or other visual documentation of an illness.
Frankly, that is a load of BS.
If the goal is to help a patient, physicians should be willing to look at this information. Do not hesitate to bring it in and request that they look over it – even if it is later in their day after you’ve left. Follow up via email or your Electronic Medical Record (EMR) portal.
Just remember that they may not take it well.
Without documentation of my rashes as a child, we may not have found out that I had SJIA instead of leukemia. This effort can literally save lives.
4. Be polite no matter what.
It’s common in our society to ask how someone is and, when they ask you back, to respond in a polite manner something along the lines of “doing well, thanks.”
This is something we have to unlearn when it comes to the medical world.
Should you be respectful? Absolutely. Polite responses such as this, though, will often lead to physicians not believing fully what you’re describing.
Smiling apparently does, too, according to one of my former PCPs.
5. Keep non-medical or sensitive issues private.
It’s a common thing to think that physicians have no interest in what your life outside of your medical issues is.
The reality is that many physicians take that mindset.
However, it’s important for physicians to know when things in your home and/or work life are changing.
If you’re having an issue sexually, for example, this could be a sign of heart disease or other important health issues. The stress of planning a wedding, moving, or trying to get pregnant can cause additional issues.
In order to treat us as whole people, physicians need to hear what our lives are fully like. Is that easy in a 10-minute appointment? Nope. But you have the right to get your questions addressed and answered.
What would you add to this list?

 

The #1 thing you have to do to be a ‘good’ patient

Posted on by Grayson
We often discuss the qualities we want to see in the perfect physician –  the compassionate one who comes in and just gets what you’re going through.
What if we turned the tables?
What is the top quality that we need to be the best patients we can be?
Be present.
When I say ‘be present’ I don’t mean that simply showing up will make you a great patient.
In my experiences with PTSD, I have had to learn to be present. I have to focus on the here and now in order to protect myself from the ifs, whens, and weres.
When I say ‘be present,’ I mean to work on mindfulness, the practice that helps us to embrace the current moment.
Our physicians are busy. We are not their only patients. Depending on their practice and where it is located, they may be responsible for upwards of 2000 patients.
Their minds are often thinking through their to-do list for later, who they need to finish charts for while they work into the wee hours of the morning at home.
They may be thinking about the checklists we all create in our heads regarding diagnoses and other issues.
In order to get the best care from our physicians, sometimes we need to be here now.
We get busy, too. Perhaps we are juggling too much on our plates like our physicians do daily.
That makes being present all the more important.
By being present and focused, we can ensure that we are actively engaged in conversations with our health care team.
If we are not, we may miss sharing important pieces of the diagnostic puzzle with our HCPs. They may miss asking questions that lead us there.
“But how am I supposed to be focused when I have 8,225,953 things going on??”
Some people find making lists very helpful in the process of being present and focused on the task at hand. Others enjoy exploring mental and/or physical grounding techniques. There are other tips over on the resources page.
Meditation can help us to cultivate this presence and, more importantly almost, the ability to be kind to ourselves when we’re not able to be as mindful and present as we like.
Do you practice mindfulness? Have you found it helps you with being present at appointments?

 

The top 3 lies people believe about chronic illness

Posted on by Grayson
Chronic illness is, truly, the gift that keeps on giving.
It continues to cause medical issues in your life despite treatments, but it also gives family and friends lovely new ways to believe you’re inferior.
Here are the top 3 lies people tend to believe about chronic illness:
1. You caused your illness.
Regardless of whether you have a type of cancer or autoimmune disease or mental health issue, everyone loves to believe that you have caused your illness.
Society loves to blame the victim, and that’s no different in healthcare than it is in criminal cases.
The truth is that no patient or victim has done anything to deserve the wrongs they endure.
You did not cause your illness.
You did not bring this upon yourself.
This is not some karmic retribution for a past wrong.
2. You could walk a mile yesterday, so you can definitely do it today.
The vast majority of chronic illnesses can rapidly change how we feel.
One day, I can attempt to run. The next, I can barely move… Hence, part of why I don’t try to run anymore.
I have seen the same in a variety of patients.
Just because we could do something before does not mean we can right now.
3. You just want to stay at home and be lazy.
Um, no?
Many patients have had great social lives pre-diagnosis with a chronic illness. We don’t necessarily want to be hermits.
We want to come to your weddings, baby showers, nights out, and friend vacations.
I want to go to comic con and not have to have my husband repeatedly rub my spine while I cry.
I want to be able to stand wearing clothes so I can go to work without missing so many days.
I just want to be able to do what I want to do. No other patients are any different.
Do you believe any of these? What would YOU put in your top 3?

 

Recapping Milwaukee SHARE HCP

Posted on by Grayson
Last week, I was honored to be able to attend some of the Milwaukee SHARE sessions. If you’re unfamiliar with SHARE, it stands for Sexual Health and Relationship Education. It is run by Tool Shed Toys, one of the most progressive and educational sex shops in the nation.
If you want to learn more about my visit there, please click here to head over to my post on Chronic Sex.

 

Can you be depressed and function at the same time?

Posted on by Grayson
In the past, some have questioned if I can be depressed, have anxiety, or deal with Post Traumatic Stress while I still accomplish so many things.
Via Tumblr
Depression, Anxiety, and PTSD have been, historically, some of the fuelers of the greatest things we’ve known – paintings, music, plays, books, etc.
Van Gogh was super depressed. The dude cut off his own ear.
Self-Portrait with Bandaged Ear
Come on.
Yet, he created some of the most beautiful art ever known.
Other notable awesome people with mental health issues include:
  • Michelangelo: OCD.
  • Tchaikovsky: Depression.
  • Beethoven: Bipolar Disorder & Depression.
  • Edgar Allan Poe: Depression.
  • Johnny Depp: Panic Attacks.
  • Isaac Newton: Bipolar Disorder.
  • Howie Mandel: OCD.
  • Demi Lovato: Bipolar Disorder.
  • Abraham Lincoln: Depression, Anxiety, and PTSD.
  • Buzz Aldrin: Depression.
  • Ernest Hemingway: Bipolar Disorder.
  • Marlon Brando: Depression.
  • Darrell Hammond: PTSD.
  • Carrie Fisher: Bipolar Disorder.
  • Calvin Coolidge: Depression.
  • Stephen Fry: Bipolar Disorder.
  • Kurt Cobain: ADD & Bipolar Disorder.
  • Agatha Christie: Depression.
  • Teri Hatcher: PTSD.
  • Jacqueline Kennedy Onassis: PTSD.
  • Whoopi Goldberg: PTSD.
  • Beyoncé: Depression.
Here we have world leaders, scientists, and entertainers. These people have changed the world despite their mental health issues.
Many of the people on this list are or were very open about their struggles with mental health as well. We discuss our mental health issues because we want others to stop feeling alone or like they have no one to turn to. When mental health issues are so prominent in the chronic illness community, why wouldn’t we discuss these as being just as valid and debilitating as other chronic illnesses?
Isn’t that the point of being a patient activist and blogger anyway?
Via Wisdom to Inspire
If Abe Lincoln can run the world, help fight a war, care for his wife’s mental health issues, and raise his kids while living with the very same three conditions I endure daily? I think I can conquer whatever lies ahead of me.

 

Am I a Hypocrite?

Posted on by Grayson

I feel like a hypocrite…

Lately, I’ve been sleeping on the couch instead of in my bed next to my husband.

There was no torrid affair with a movie star or falling out. Instead, this is all thanks to the plethora of illnesses that I’ve collected over the years. The biggest culprit as of late has changed from my mostly-controlled Systemic Juvenile Idiopathic Arthritis (SJIA) to my Fibromyalgia. With that comes allodynia, or that thing of when sensations that shouldn’t hurt you do hurt – like clothing touching your skin. Our couch is super soft and feels like a fleece blanket so, when my Fibro flares up, that’s where I live.

That doesn’t mean I slow down by any means. I do a million things from that couch: work on my masters, plan advocacy events, raise awareness of illnesses or money for new treatments, mentor others, write, run two websites, host a weekly chat, Skype or game with my sister, be a badass friend, play with my guinea pigs, pass out and snore, and more! I do sleep – promise.

I’m not superwoman. I know this. I have dealt with such bad fatigue that, when I have the energy to accomplish these things, I have to act. Call it making up for lost time, being stubborn, hogging opportunities – I call it helping others. That’s what I love to do.

Participating in such a wide variety of things contributes to stress and, in turn, pain at times. It takes away from things I might be able to do with family or for self-care. The topics I write about – relationships, self-love, sexuality, dealing with comorbid conditions, managing healthcare, recovering from childhood abuse, and more – resonate with others. They are topics that aren’t covered well by other patients, physicians, healthcare professionals, organizations, and more.

I do all of this because I know that I could have used someone like me as I grew up, as I learned more about my illnesses, to show that you can still be sassy, realistic, have a crummy backstory, and STILL live an awesome life despite rocking a replica House, MD cane sometimes.

 

I’m that person who annoyingly nags you about taking care of yourself. I do it because I love you and because taking care of ourselves is integral to living well with chronic illnesses.
Hilariously enough, I am really bad at self-care. As the idiom goes, “Those that can, do. Those that understand, teach.”
I get why it’s important to take care of myself, and I try. Living with multiple chronic illnesses and working full-time can be very tiring, especially when you’re trying to change the world too.
You know, no biggie.
What are some ways you could be taking better care of yourself?

 

Musings on My Personification of Arthur

Posted on by Grayson

I have often said over the last few years that I feel grateful for being sick since childhood. I don’t remember living really without the limitations that I have grown up with, even though they do change enough to irritate beyond belief. I have multiple chronic diseases but my fibro is currently the worst offender now that my SJIA is mostly under control.

That brings its own challenges, though, like feeling that I’ve lost a huge part of me. Arthur, as I’ve always called my SJIA, was much like a twin. There is an emptiness that comes when the thing you’re closest to is gone, especially when you have a tendency to personify it.

There is a mix of joy for some semblance of pain relief, sorrow that he’s not around, and guilt that I’m doing so well while children I know have been in and out of the hospital seriously ill and fighting for their lives.

If Arthur had come along later than kindergarten, would I feel differently about him? If I grew up in a home without abuse, would I have gotten so attached to him, to that familiar pain?

I think that I clung to Arthur and used the physical pain as a distraction from my emotional and mental distress from my childhood. Another child in a similar situation may go to a friend’s house as a source of respite, but I didn’t have friends. I was basically not allowed to have them because I could share something that happened and I’d be taken away from my mother.

 

That threat was always there.

 

Arthur was that escape for me. Stress and emotional distress bring on flares so it was easy for me to be distracted, to escape into the pain that was most comfortable to feel because I didn’t know different.

 

I did know that my household was awful, that this was not how things were supposed to be, but I didn’t know a life without Arthur.
Courtesy of Quotes Gram
Arthur, my security blanket, is tattered and worn.

 

I have to actually face everything I grew up experiencing, both as an adult and as the child in me.

 

I know I’ll be better for it and I’ve already made so much progress…

 

There are too many times where I want that blanket back, though.