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in Lifestyle &middot March 14, 2017

Arthritis Foundation Advocacy Summit: 2017

Last week, I went down to Washington, D. C., for the Arthritis Foundation Advocacy Summit. This is a trip for learning how to be an advocate and then actually meeting with representatives on Capitol Hill to ask for specific ways they can help their constituents. As you can probably gather, it’s put-on the Arthritis Foundation. It’s also a great way to meet other advocates, see friends you’ve made before, and learn about how to improve as advocates.

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Recapping the 2017 Arthritis Foundation Advocacy Summit

Sunday, March 5 – Flight, Friend, Homework

Arthritis Foundation Advocacy Summit 2017

I had a 10 AM flight, so I got to the airport and did homework while I waited for my flight, as well as while on the flight. Once I landed, I got to see a friend of mine who lives in D. C. – one of my oldest friends; we’ve been friends since we were 7 – and pick up some food for food-sensitivity emergencies. I then spent the rest of the day resting in advance of the activity I would experience over the next few days. Speaking of activity …

Monday, March 6 – Advocacy Training

Casual and preppy spring outfit
Jeans | Top | Similar Necklace

The morning started off with a series of welcome addresses (including updated statistics on arthritis, the issues we would be speaking of, etc.) before we broke off for advocacy trainings based on our level of experience.

Arthritis Foundation Advocacy Summit 2017

I attending the intermediate advocacy training, which focused on responses to opposition to our issues. There, I got to hang out with the one and only Kenzie, who I’ve been friends with online for  years but just met in person that day.

Arthritis Foundation Advocacy Summit 2017
Proof we hung out taken from Kenzie’s Insta story. Also, she has ice because she just got a port put in three days before this because she’s a badass.

After lunch, there was a series of trainings for people to attend based on their interests. I actually spoke at the social media advocacy training session! Action shot:

Arthritis Foundation Advocacy Summit 2017

Tuesday, March 7 – Visits to Capitol Hill

On Tuesday, we had a goodbye session over breakfast before heading to Capitol Hill. Since my meetings didn’t start until noonish, I had a couple of hours to kill, which I spent studying and hanging out with other people in the Massachusetts delegation. Then, we headed over a bit early to enjoy the nice weather (60s!) and make our way with minimum stress.

Arthritis Foundation Advocacy Summit 2017
Most of the Massachusetts Delegation

We met with Elizabeth Warren’s office first before splitting up for our afternoon meetings.

Preppy & Professional Outfit
Pants | Top | Bag | Similar (But Cheaper) Bag | Watch | Fitbit Flex 2

In the afternoon, I delivered materials to the offices of the representatives who we didn’t have a meeting with before meeting with my congressman, Mike Capuano. We even got to meet the congressman himself for a few minutes!

Arthritis Foundation Advocacy Summit 2017

After the meetings, I headed to the airport, and made it to Boston around 10 PM. And then I was at the hospital at 6:30 the next morning for my infusion!

Overall, it was a great trip. This is my third year going, and I’m so grateful that I’ve had the opportunity. Due to pure perfect timing, we went to the Hill the morning after they announced the new healthcare replacement plan, so we had the opportunity to share our stories and explain how the government can help us going forward. If you want to get involved and influence your representatives, here are some things you can do:

  • Call their office and tell them what it is you’re looking for – you can’t expect them to read your mind
  • Reach out on social media and tell them your opinion, but be specific. Don’t just say, “You’re hurting your constituents.” You need to say, “By doing x, you’re hurting your constituents.”
  • Here are more tips on how you can get involved and make a difference

 Have you ever gone on an advocacy trip like this? What was your experience?

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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  1. Kate the (Almost) Great | Boston Lifestyle Blog - 5 Items Every Person on Immunosuppression Needs says:
    January 24, 2018 at 8:00 am

    […] held off on this for 6.5 years because I didn’t want the weird looks. Then I mentioned at the Arthritis Foundation Advocacy Summit that I didn’t have one and several of my friends scolded me, so now I have 2. I got mine from […]

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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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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🤞🏻

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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 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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