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in Health &middot April 23, 2019

HealtheVoices 2019

Janssen Pharmaceuticals paid for my travel and hotel. All opinions are my own. They did not ask me to write a blog post about my time at the conference.

For the second year in a row, I was able to attend the HealtheVoices conference a few weeks ago! This year, it was in Dallas. I had a wonderful time, and since this is my blog, I thought I would recap my time for those of you who are interested and/or who wanted to go but couldn’t make it. I’ve also included all of my livetweets of the conference, which are split into threads for each session.

Attending the HealtheVoices 2018 Conference

Boston lifestyle and health blogger Kate the (Almost) Great shares her experience at the HealtheVoices19 conference, a conference for online healthcare advocates.

Thursday (Day 0)

reviewing Ida Claire, Dallas, Dallas restaurant, reviewing Dallas restaurant, Ida Claire Dallas, Ida Claire Dallas review, Ida Claire review

On Thursday, I woke up bright and early for my 7:47 flight from BOS to DFW. It was really nice that it was a direct flight, but it was also a long flight for me. 2 hours is about the most I can comfortably do a flight, but this flight was 4.5 hours.

I arrived at my hotel by 12:30, and was surprised to see how many HealtheVoices people were already there! I checked in, but they didn’t have a room ready for several hours, so I hung out with new friends in the lobby (and finished a blog post). I finally got a room around 3:30, and after that, I rested for a few hours.

That night, the RA and ankylosing spondylitis advocates went out to dinner with some people from Janssen who work in the rheumatological space. We went to Ida Claire, which is all about Southern food! It was a fun time, but it was so busy that it was kind of difficult to hear each other. But goodness gracious do they have AMAZING sweet potato chips! I ate far too many of them.

Friday (Day 1)

Arthritis advocate and patient Kate the (Almost) Great shares her experience at the 2019 HealtheVoices conference, a conference for online health advocates.

The conference fully got underway on Friday morning! Up first was the opening session featuring the patient advisory board, real patients who helped Janssen put together the conference. One thing that was fun was we were at assigned tables, which was good because a) we got to meet new people, people we may not have met otherwise and b) it helped prevent cliques from forming. After the advisory board spoke, we did ice breakers/getting-to-know-each-other activities. Check out my live tweets of that morning’s session here:

#sponsored Gooood morning, #HealtheVoices19! We're about to kick off the opening sessions. As a reminder, Janssen paid for my travel and hotel, but all opinions are my own. I'm going to try to thread my tweets by sessions. If you're not here, follow along: https://t.co/luKgy4CtVv

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 12, 2019

There was also a session about resiliency on the first day. The thing about living with chronic illness(es) is we have to be resilient – we don’t have a choice. But we can use our resiliency to our advantage. There were 4 patient advocates who spoke in this session, and they share their tips for being resilient. Check out what they had to say here:

We'll shortly be getting underway with the session Rising through Esilience in Advocacy: The Power of Connection. I'll be live tweeting in this thread, so feel free to mute it/me if you're already annoyed by my tweeting lol #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 12, 2019

I needed to go lie down in the afternoon, and thankfully HealtheVoices understands that that sometimes needs to happen! After resting, I was able to make the YouTube session, which I was glad about because I missed it last year. This was led by Leland Candler, head of strategy at YouTube. This is one of the reasons why I love HealtheVoices – they get people from these companies like YouTube to speak at the event. We looked at the brand side of things, which I found fascinating as someone who has worked with brands, albeit on this blog and not YouTube.

I learned a LOT about YouTube videos from that session. And, of course, I tweeted it all.

We'll be starting a session on YouTube here at #HealtheVoices19 soon! As a reminder, #sponsored, etc. [THREAD]

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 12, 2019

Saturday (Day 2)

Boston lifestyle and healthcare blogger Kate the (Almost) Great shares her experience at the 2019 HealtheVoices conference, held by Janssen.

On Saturday, we started off with a session on best video practices from a patient advocate who uses YouTube as his primary platform, Josh Robbins. It was pretty cool to hear from him about video because he spoke mostly about the creative side, while the session from YouTube featured the brand side.

Josh also spoke about live streaming, which was really great to hear because for the second year in a row, he was running the livestream for HealtheVoices. So he knows a thing or two about it! You can read more about what happened in the session here:

Okay, we're about to get going on #HealtheVoices19 Day 2! As a reminder, my trip is #sponsored by Janssen (they paid for my travel and hotel) but all opinions are my own. I'll try to thread my tweets by session!

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

After that session, we started break-out sessions for the day! This means that for each 1-hour session, we had a few different options to choose from. I attending a session about turning your story into a memoir. Marisa Zeppieri led this session and shared her creative process for writing a memoir, as well as the publishing process. Part 1 of the memoir session:

My first break-out session is about turning your health story into a memoir or memoir-hybrid. As a writer, I'm super interested in this topic! #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

Part 2:

You need themes and hooks for your memoirs.
Themes: important for you/reader/publisher and are weaved throughout the book.
Hook: describe the book in a . sentence or two #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

Next, I attended a session about an introduction to podcasting. I’ve been a guest on a few podcasts now, and I really like them, but I haven’t reached a point where I feel the desire to make myself. But this session was really fascinating, and what I especially liked was it featured making an example podcast during the session.

Starting the next session shortly: I'm in Intro to Podcasting! #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

The final session I attended on Saturday was about research and getting involved as a patient! As I said in my livetweets (which are below because of course), I’ve been called “highly complex” and “interesting” by doctors, so I’m really drawn to research. It was a really great session, and we got to hear from a patient who participates in research and a doctor who has worked in research from the researcher side. That combination made for a fascinating session!

I lay down for a while and am now ready for the session on getting involved in research as a patient! Follow this thread (and, as always, the hashtag). #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

That night was the annual HealtheVoices Open Mic Night! I didn’t attend due to not feeling great, but apparently it was awesome.

Sunday (Day 3)

healthevoices, healthevoices19, chronic illness, chronic pain, rheumatoid arthritis, ra, rheum, arthritis, fibro, fibromyalgia, endo, endometriosis, pots, postular orthostatic tachycardia syndrome, chronic anemia, asthma

On Sunday, we started the day with a session about Twitter from Twitter! Twitter is my favorite social media network, so I was looking forward to this session. A lot of it I already knew – I’m a Twitter expert, after all – but it was still a good session.

Last day of #HealtheVoices19! We'll be getting underway shortly with a session about my favorite thing, Twitter. Janssen paid for my travel and hotel, so #sponsored, etc.

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 14, 2019

The last proper session we had was about self-preservation, and it all came full circle in that it was done by the HealtheVoices patient advisory panel. They spoke about their strategies for self-care as well as self-preservation (and yes, they’re different). It was a good session for thinking about what your strategies are.

We'll be starting a session on self-preservation shortly! As a reminder you can join #HealtheVoices19 remotely through #HealtheVoicesLIVE (or by following this thread)

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 14, 2019

We ended with a short closing session from Barby Ingle. She spoke about how, when she got sick, she felt that she wasn’t her any more, and how she got past that. It was a really moving session and a wonderful way to end the conference.

Closing session time! Follow this thread or the #HealtheVoices19 hashtag! Going to hear from the one and only @BarbyIngle

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 14, 2019

Have you been to a conference like HealtheVoices?

Like this post? Check out:

Chronic Illness and Mental Health, How To Become an Advocate for Patients, Is Chronic Illness a Disability?, 10 Simple Self-Care Methods That Will Improve Your Life

Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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Dos and don'ts for when someone in your life is di Dos and don'ts for when someone in your life is diagnosed with autoimmune arthritis! What are some that you would add?⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: "So someone you know was diagnosed with Autoimmune Arthritis". Under the Do column (indicated with a green checkmark) is:⁣
"As how they feel about it⁣
Offer specific ways to help⁣
Treat them normally⁣
Ask follow-up questions⁣
Wear a mask around them when sick."⁣
Under the don't don't column (indicated with an x in a red circle) is:⁣
"Say “At least it’s not xyz!”⁣
Say that and not follow through⁣
Assume nothing about their lives has changed⁣
Conflate autoimmune arthritis with osteoarthritis⁣
Pass your cold to an immunosuppressed person".⁣
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#AutoimmuneDisease #RheumatoidArthritis #PsoriaticArthritis #AnkylosingSpondylitis #JuvenileArthritis
Weekj 26 of 2026 Weekly Scenes of a summer week Weekj 26 of 2026 Weekly 

Scenes of a summer week in Maine! So glad I work from home, which means I can work from my real home (Maine, if that wasn’t clear)

1️⃣ Lots of Harley time
2️⃣ Working from home means saving my PTO for fun things!
3️⃣ Lots of duck families (📸 my dad)
4️⃣ What a lot of my days look like - Harley and my current project (needlepoint). And, yes, I’m still in a cast.
5️⃣ Learned how to play Mahjong, which my parents love
6️⃣ Lake views on the 4th

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣⁣⁣⁣

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IDs:
1️⃣ Harley the golden retriever on a deck as seen through some plants
2️⃣ Kate takes a selfie
3️⃣ A duck with little ducklings following on a lake
4️⃣ Harley coming up to Kate. Her legs are out on an ottoman, 1 foot in a walking cast, and an in-progress needlepoint project
5️⃣ Looking down at a Mahjong table with the game set up
6️⃣ A kayak on the shore of a lake 

#MaineTheWay #MaineSummer #Needlepoint #MaineLife
Living with chronic pain is really hard. You’re wi Living with chronic pain is really hard. You’re winning every day you’re still here.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: The background image is a lake at sunset. Text reads what's above the first square and also "katethealmostgreat".⁣
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#ChronicIllness #ChronicPain #RheumatoidArthritis #Fibromyalgia #Endometriosis
I've been spending a fair amount of time at my foo I've been spending a fair amount of time at my foot surgeon's office this year, and boy has it been messing with my head. ⁣
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I spent a lot of time from 2001-2010 dealing with my left foot. Long story short, it took until this foot surgeon saw me in 2010 after fixing this foot for me to be diagnosed with rheumatoid arthritis. But I spent those 9 years going from doctor to doctor, having surgery after surgery, trying to figure out what was causing my pain and to fix it. ⁣
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Was it the tarsal coalition? Did I have another chronic health issue? Etc. ⁣
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I spent from age 10 to 19 unsure what exactly was wrong with me and in huge amounts of pain. We thought we figured it out, and then something else happened. ⁣
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We know exactly what is wrong with this foot this time around: in 2024, I got 3 stress fractures, and no one put me in a boot. They almost fully healed before breaking in 2025, and then the same thing happened in 2026. ⁣
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This is a different part of the foot than I used to deal with, but any problems with my feet and especially my left foot messes with me. While this doctor eventually fixed the problems and even got me diagnosed with RA, every time I go back to his office, I have to fight not to become 17 again. ⁣
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PTSD is a bitch.⁣
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(PS - if you want to know why I'm going back to this guy when it messes with me, it's because I don't trust anyone else to fix my foot.)⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: Kate takes a selfie in a doctor's office. ⁣
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#PTSDAwareness #ChronicallyIll #TarsalCoalition #RheumatoidArthritis #Osteoporosis
Week 25 of #2026Weekly Happy to be in Maine for Week 25 of #2026Weekly 

Happy to be in Maine for a few weeks! I didn’t get up to a lot, so another week of very few pictures

1️⃣ IVIG 
2️⃣ Lots of beautiful birds have been coming to my mom’s bird feeder!

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣⁣⁣⁣

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IDs: 
1️⃣ Looking at Kate’s lap. Tubes are coming out from under her shirt and there’s a Kindle
2️⃣ Birds arriving at a bird feeder as seen through a window

#ChronicallyIll #InvisibleIllness #ChronicPain #IVIG
What do you have to do every day for your chronic What do you have to do every day for your chronic illnesses? ⁣
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For context, I have rheumatoid arthritis, fibromyalgia, endometriosis, POTS, heart disease, osteoporosis, and more. ⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: ⁣
Things I Do Every Day for My Chronic Illnesses⁣
Take pills at least 4 times a day⁣
Don’t eat gluten, dairy, corn, soy, or eggs⁣
Sleep 7+ hours a night⁣
Consume 80-100 grams of protein, 120 mg of calcium, 5-10 grams of sodium⁣
Wear a mask whenever I leave the house⁣
Do pilates 4+ days a week⁣
Work from home⁣
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#ChronicallyIll #InvisibleIllness #RheumatoidArthritis #Fibromyalgia
Filmed this back in April (hence the sweater) but Filmed this back in April (hence the sweater) but it applies to whenever I have appointments! 

Video: Kate talks to the camera while holding a purse. She holds up individual items mentioned in the video before putting them in the bag. There are captions. 

#ChronicallyIll #RheumatoidArthritis #Osteoporosis #ChronicPain
There are a lot of medical advancements that I'm g There are a lot of medical advancements that I'm grateful for, but one of them is the ability to do IVIG at home. ⁣
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I'm on IVIG - or, in my case, subcutaneous immunoglobulin replacement therapy - because I have to kill the better part of my immune system. There are, in fact, some parts of my immune system that don't attack me, which is why we add them back in. This helps reduce my chance of serious infection and also made my rheumatologist feel comfortable enough to increase my Rituxan dose. ⁣
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This is a weekly treatment that I do, but it's so much better that I can do it at home than going into the hospital. It takes around 2.5 hours from taking my pre-meds to tossing my needles into a Sharps container. While it's another thing that I have to do, because I do it at home, I don't have to risk exposure to infections at the hospital or deal with Boston traffic, which would add another hour to the process. ⁣
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I can finish my treatment and then go about my day, which I'm very grateful for.⁣
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⬛⁣⁣⁣⁣⁣⁣⁣⁣⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: A Kindle on Kate's legs. There are tubes for an infusion coming out of her shirt.⁣
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#IVIG #ChronicallyIll #RheumatoidArthritis #Autoimmune #AutoimmuneDisease
Weeks 23 and 24 of 2026 Weekly! The last two wee Weeks 23 and 24 of 2026 Weekly! 

The last two weeks were prepping for my infusion, having/recovering from my infusion, and getting caught up after. This meant things were very busy but also I don’t have a lot to show for them. 

1️⃣ New glasses! I really like having multiple pairs so I can switch them as I want.
2️⃣ One of my current projects. I got this standing hoop for my birthday and I’m working on an alphabet (uppercase and lower, although I’m still working on the lower) with extra floss.
3️⃣ Infusion time! I got my higher dose so hopefully my symptoms improve a lot in the upcoming weeks🤞🏻

⬛⁣⁣⁣⁣⁣⁣⁣⁣

I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣⁣

⬛⁣

IDs: 
1️⃣ Kate takes a selfie. Her new glasses are thin silver circles
2️⃣ An in-progress cross-stitched alphabet in a special hoop stand that Kate is sitting on.
3️⃣ Kate takes a selfie in an infusion chair.

#ChronicallyIll #RheumatoidArthritis #AutoimmuneDisease #CrossStitcher
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