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?

 

Review: Nimble

Posted on by Grayson
This is a sponsored post. I was provided the product in exchange for an honest review, and I have been compensated for my time through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by Version22 Designs or Chronic Illness Bloggers.
 
I feel like the name Nimble is a combination of ‘nifty’ and ‘thimble.’ I’m totally making this up, but check out how it looks and tell me that it doesn’t make sense.
Right? This is totally a cute yellow nifty thimble.
I was super excited to be a part of trying out the Nimble! I’m not great with sharp things sometimes, especially when my Fibromyalgia and SJIA hit my hands… AKA Sunday after making questionable food and beverage choices at Aunt Brenda’s wake.
Upon first glance, I was interested to see that this little fingertip-hugging cutting tool had similar ideas to a box knife. The only difference is that the cutting piece is permanently out and unadjustable.
I was totally fine with that since this cute little fingertip cap doesn’t cut me but does cut other things.
I’m a bit of a klutz, so this was a great tool to try out. I’m always cutting myself whether opening packages with sharp objects or with my hands.
I wasn’t entirely sure how well this would cut, especially with my hands being less able during this time period. It cut through paper pretty well.
And even cut through tasty snack plastic easily. Honestly, it did even better on that than the paper.
When I used the Nimble on cardstock, it was less easy. Again, my hands have been flaring and, thus, aren’t as strong. I did also try this on an Amazon box I needed to break down and had some difficulties there as well.
The nice thing is that the Nimble is small enough you can adjust how you have it on your finger and the pressure you need to apply. My guess is that my hands were getting in the way no matter what.
It does take a certain amount of pressure to cut and I just wasn’t at that strength level this weekend. Nonetheless, this was very useful even with grumpy hands on tape, plastic, and regular paper.
I am very excited to start using this in my kitchen, too, as it seems to be very easy to clean.
Courtesy of Version 22
Want to snag your own Nimble and easily open some bacon? Head over to their Kickstarter and snag a sweet deal (note: bacon not included).
If you’re not familiar with Kickstarter, you pledge a certain amount of money to help a product be created and, depending on your donation level, also get fun bonuses. Here is what Version 22 Designs and Nimble currently have available:
On Kickstarter, you only wind up being charged if a product meets its fundraising goal. Since Nimble has reached that already, this means any orders you placed are guaranteed to ship out.
It may take a little while for you to receive your Nimble as they have not been completely created yet. The current timeline indicates that October will likely be when these start shipping. The nice thing is that’s just in time for those gift-giving holidays!

 

“Who lives, who dies, who tells your story.”

Posted on by Grayson

A line from the play Hamilton asks: “Who lives, who dies, who tells your story.” What do you want your legacy to be?

Let me tell you what I wish I’d known
When I was young and dreamed of glory
You have no control
Who lives, who dies, who tells your story
With Aunt Brenda passing and having the ability to spend time with my fellow health activists, this was already on my mind.
It’s a part of why I’ve picked up my meditation practice again and why, although I’m busy, I have more free time.
Thanks, Quirk Books!
I want to change the world for the better for everyone BUT I also know that it isn’t fair to potentially neglect my loved ones in order to do so, actually thanks to Hamilton.
Thanks, Giphy!
I’m certainly not talking less, but I am smiling more.
Thanks, Giphy!
I’m still getting the job done, but I’m taking into account some of the things that Hamilton should have listened to.
Thanks, Tumblr!
I’m doing things in a more focused way, too, which leads to more dancing.
Thanks, Giphy!
Thanks, Odyssey!
Thanks, Odyssey!
Thanks, Odyssey!
Anyhow, back to the telling the story bit.
Thanks, Giphy!
I am not naive. I know that I haven’t necessarily made friends of a million people. I’m pretty inflexible where my values are concerned (especially regarding ableism, racism, sexism, classism, etc).
I’m proud of that.
Thanks, Odyssey!
I’m proud of standing up for others.
I’m proud of helping patients navigate and letting them know what physicians end up dealing with.
I’m proud of being cloyingly sweet until I’m not.
I want these things to be my legacy. I want people to recognize how important it is to stand next to your values, to advance your cause without stepping on the causes of others, to help without doing harm.
I know that I’m a hippie, but hear me out:
We as patient activists and advocates have a unique shot at being able to help both sides understand the current state of healthcare and provide motivation for change. We have the ability to erase the barriers and silos, not only in healthcare as a whole but also in our online communities.
I have a shot to make the world better, not only for patients with my illnesses but for others.
Thanks, Odyssey!

 

Breast Cancer Sucks

Posted on by Grayson
Often in the chronic illness world, we get upset at the things that cancer patients may get a pass on that those of us with other invisible illnesses don’t.
I have had the ability to know strong women fighting cancer in my life from my cousin Sara to friends. The only difference is that they have all survived.
Aunt Brenda did not.
Brenda and her Tim at our wedding
She spent the better part of my time in the Schultz family battling breast cancer. She kicked it to the curb once, only to have it come back.
She had periods of time where her fingernails were falling off and she even had a stroke.
The thing about Brenda, though, is that she always bounced back cracking jokes. She was, up until the last day I saw her, always the life of the party.
It might be easy to assume that the party has ended with her passing, but I know she’d be pissed if we said that.
This afternoon, friends and family will get together and drink in her honor. I’ll definitely throw one back for her.
In the guinea pig parenting world, we talk about our loved piggies crossing the rainbow bridge to fields of hay and snacks. If that heaven exists, I’m sure Brenda is trying to construct piggie bathrooms and explaining why that’s better than going everywhere.

 

Recapping #Healthevoices16 in gifs

Posted on by Grayson
Chicago was SO MUCH FUN.
I cannot even begin to fully unpack everything – mentally, emotionally, and from my actual bags.
I got to hang out with some of my favorite people like Eduardo (RA Guy), Britt (Hurt Blogger), Leslie (Getting Closer to Myself), Kristin (Chronically Kristin), and Mariah (From This Point. Forward).
I also got to meet some of the wonderful people with Janssen that I will have the luck to work with more in the future as a part of Joint Decisions.
If all I did was meet them, the trip would have been worth it.
Thanks, Meme Crunch!
Our opening dinner was amazing. During which, I consumed two glasses of wine, sat next to Britt, and got to hear from the founder of Patients Like Me.
People came up and introduced themselves, excited about Chronic Sex or having been readers of mine for a long time.
HELLO TO YOU MY FRIENDS
On Saturday, I attended an amazing session with Trevis Gleason. Like my great grandmother Katie Mae, Trevis has MS and is a passionate advocate. He shared his journey, including my favorite part of the conference sessions themselves:
“Your illness did not make you better.”
It doesn’t stop there, but the following is a paraphrase: You had a Shawshank Redemption moment where you tore down bricks, made a tunnel, and “crawled through your own shit” to come out on the other side as a transformed person.
Thanks, Tumblr!
As if that alone wasn’t enough, he shared great ideas like working on publishing, inviting others through our apparel or accessories to discuss our illness, and then read to us from his book.
I’m in literary crushville.
The next session I hit up involved the legal aspects of blogging – defamation, trademarks, copyrights, protecting your information, etc – with Jimmy Nguyen.
With websites stealing information from us bloggers being a rampant issue lately, this was a much-needed session.
Many of us came together during the next session to discuss how to encourage a community feeling.
I hope that we will have visits, virtual convos, and tweet chats to help foster this.
.@Kirstie_Schultz shares her excitement at #HealtheVoices16 and how advocates can work together effectively! pic.twitter.com/Mf9NdxBau0

— HealtheVoices (@healthevoices) April 16, 2016

Ironically, I had to go have a rest during the Compassion Fatigue session I was hoping to attend with the amazing Rhonda Waters. The fact that she works often with the Joint Decisions group has me ecstatic, though.
Dinner Saturday night was tons of fun. I was with Britt and Leslie again, Molly (And Then You’re At Jax), some of the most amazing IBD/Crohn’s activists, and others.
You’ll have to forgive me on some of the deets because the amazing Deirdre from Tonic Communications snagged me a pitcher of red sangria… and I was the only one drinking it, save one cup.
Thanks, Giphy!
It was amazing.
KevinMD gave the Sunday keynote to a very… contentious room. He did not really alter his talk from speaking to HCPs to speaking to patient activists and advocates. This meant that he was asking us for help that we cannot give while downplaying the important things we do for free.
I was not thrilled with his talk, and he also didn’t stay very long for people to share more information with him afterward.
That was nothing compared to what happened next – all my new friends started to LEAVE!
Thanks, Mashable!
NOT OKAY, YOU GUYS.
Alas, I had to go home eventually as well.
Thanks, Tumblr!
I ended up getting motion sick and tossing my cilantro on the bus to the airport. The nice thing about that is the amazing patients I was with rubbed my back, got me bags, and took care of me until we hit the airport.
It was super sweet. Not unsurprisingly for those of you who know my background, my sister and my husband are the only ones who have ever really done those kinds of things for me.
That just secured it, though.
Thanks, Movie Pilot!
I CANNOT wait until next year.
No, seriously. Please let’s do things in the interim.
Growing up in an abusive home, a family of choice is something I’ve embraced wholeheartedly… I don’t communicate with my family of origin. Not everyone in my family of choice was at HealtheVoices16, but so many were: my sisters Britt, Kristin, and Leslie; my brother Eduardo; and our momma hens, Becky and Deirdre.
There is much I want to say, but right now I just cannot find the words.
Thanks, Goodreads!
PS: While Janssen paid for my travel to HealtheVoices16, all thoughts and opinions expressed here or on social media are my own… especially regarding how amazing people are.

 

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.

 

I’m off to #Healthevoices!

Posted on by Grayson
This weekend, I get to attend the Healthevoices conference in Chicago! I’m actually leaving tonight after work because I love Chicago.
Not just because I get to snag a ton of gluten free Do-Rite Donuts in the morning then.
Chubbs the Adipose remembers
I am SUPER excited!
PS: While Janssen is paying for my travel expenses for the summit, all thoughts and opinions expressed here or on social media are my own… especially regarding donuts.

 

Recapping Comic Con

Posted on by Grayson
I went to a comic con for the first time on Sunday.
Holy crap, you guys.
It was amazing.
I got to hang out in the Batmobile.
And then go hang out with Alex Kingston and David Tennant.
Later, I was able to snag his autograph.
He said my name right and told me it was lovely to meet me.
/swoon/
It’s so interesting to be able to meet people you really admire for their acting abilities. He is, by far, one of the best Shakespearean actors.
The version of Hamlet with him as the lead and Patrick Stewart as Claudius is AMAZING. If you haven’t seen it, grab some wine and some cake and hit up PBS.
Now if you excuse me, I have to figure out how to get some of my energy back!

 

I’m not a bad daughter

Posted on by Grayson

Identify something negative you believe about yourself because of a past mistake for which you’ve struggled to forgive yourself (for example, “I’m a bad person”) – something that is not a fact, even if it may feel like one. Look for one piece of proof to support the opposite belief today. (For example, helping your sister could be proof that you are, in fact, a good person.)

My belief: I’m a bad daughter for not having a relationship with my mother.
Believe it or not, that’s still a belief I struggle with.
I know I’m doing the right thing for me, but damn. Society always thinks differently, and that peer pressure is hard.
One nice thing, though, is that I know I’m not alone.
We’re warned that “divorcing their parents will comeback to haunt” us, that we’ll rue the day we ignored Biblical and societal standards of honoring our parents.
The thing is, those parents have to honor us back at some point too.

“I feel angry that I never had a proper mother. I feel angry that I don’t know what it feels like to be nurtured or taken care of.” – Adult daughter who has not spoken to her mother for seven years

Adult children do not divorce their parents lightly. “The feelings of love and loyalty are so strong,” says a daughter no longer in contact with her parents. “It took me many years to stop feeling ashamed of the hurt I had caused them, but my desire to protect my new family was stronger.”

Some note that forgiveness doesn’t mean erasing the past:

Forgiveness doesn’t mean sacrificing myself to please someone or an entire culture of someones.

Others note the freedom that comes with the change:

Overall I am a happier person since I have disowned them. I feel relief mostly, like I’ve gotten out of jail for a crime I didn’t commit.

Regardless of everything else, I know that I’m doing what’s right for me. I refuse to be abused anymore. I don’t expect everyone to understand, but I do expect that people respect my decision.
It’s not one that anyone in my position makes lightly.
Without my mother, I am whole. I can have a real relationship with my sister, something ironically my mother predicted would happen when we were younger – we were told she didn’t care if we liked her or even loved her but we better love each other, damnit, because we’re all we have. Apparently it’s easier to talk that than live it.
My health – mental, physical, and emotional – is better than it has ever been.
My relationship with myself and with others is better.
I’m far less angry or frazzled all the time.
Courtesy of Pinterest
If my mother truly cared about me, she would support me in this even though it hurts her since it benefits me so much. I guess I know now that she doesn’t really, does she?