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&middot February 15, 2020

POTS Exercise Protocol Diaries

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POTS Exercise Protocol Diaries

Are you interested in learning more about trying an exercise protocol for your POTS? Talk to your doctor(s) before trying this, but if you want to know more from the patient perspective, check out my journals of my experience. In these posts, I’m doing the CHOP POTS protocol (Children’s Hospital of Pennsyvalnia).

POTS Exercise Protocol Diary: Month 1

Month 1: “Well, here we are. It’s happening. I’ve joined a gym, I’m all set, and tomorrow I’m going to start this program. I would be lying if I said I wasn’t nervous. Last week, I started doing some of the strength training exercises to ease into this program, and I’m so glad I did. They were difficult! I lost a lot of progress when I was ill in December, and while my aquatherapy has helped a lot with that, I hadn’t done exercises like these in a long time. Maybe even since before my 2017 knee surgery. But I can’t go on living like this. When we started having temperatures in the 50s, my heart rate started increasing and causing the associated symptoms – nausea, dizziness, etc. As I said to my physical therapist last week, it wasn’t even May and I was already over the warm weather. And it’s New England, so it hasn’t even been properly warm yet. So tomorrow I start. Pool, controlled cardio, strength training, repeat. It sounds simple, but when your health is anything but, something as simple as a workout can be nerve-wracking” Read more

POTS Exercise Protocol Diary: Month 2

Month 2: “Week 2 really took 2 weeks, or at least 1.5 weeks. I took Thursday the 13th off because I had a very bad pain day, and then I went to Maine for less than 48 hours. I didn’t want to drive 40 minutes one way to go to my grandma’s retirement community’s gym while I was only up there for such a short period time, so I started Week 2 on a Tuesday and came back to it 1 week later. Long story short, yesterday I started Week 3. The next few weeks are going to be a bit hectic, so I wanted to get in a workout when I could.” Read more

POTS Exercise Protocol Diary: Month 3 | Kate the (Almost) Great

Month 3: “I’m also worried that people will think that I feel better than I do because I’m going to the gym now. My pain isn’t improved because I’m going to the gym. I’m going in spite of my pain because my POTS is making me miserable. It’s not that my pain has gotten better and because of that my POTS is the bigger issue. It’s that my POTS is, for now, the bigger issue than the arthritis, which is a sign of how bad the POTS is, not how good the arthritis is.” Read more

POTS Exercise Protocol Diary: Month 4

Month 4: “First upright bike workout is in the books! It wasn’t bad, although it wasn’t easy, until I got off of the bike. I felt like I was going to fall over! I usually walk home from the gym (I don’t want to put people on the bus through Sweaty Kate, and also it’s only 2 stops so it already feels kind of like a waste of money) and stretch when I get home, but this time I stretched at the gym before walking home. And I so glad I did because I was so sore and tired when I got home that I didn’t trust myself to sit down before getting in the shower. I now understand why this month involves the recumbent and upright bikes: it’s too much of a change to expect patients to go straight to the upright.” Read more

POTS Exercise Protocol Diary: Month 5 | Kate the (Almost) Great, Boston Blog

Month 5: “I’ve been thinking about it and I think that this month is the first but not the last that I will have to vary from the plan. This month is the first that I’m supposed to do elliptical training, but upright exercise is murder on my knees and ankles. Today, I’m doing 40 minutes on the upright bike: 10 warm-up, 20 of 125-145 BPM HR, and 10 cool-down. I’m doing this to get my body back to heart-rate training like I was before (months ago … yikes).” Read more

Note from November 2020: This protocol was paushed in March 2020 due to the COVID-19 pandemic. Not only did gyms close, but I’m immunosupressed, so I can’t go to a public space, let alone a gym, until the pandemic is passed. My dad did by an indoor upright bike, so I’m hoping to get back to the protocol in 2021, but for now it is paused. I will update this page once I start it back up again!

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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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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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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⁣⁣.⁣⁣

⬛⁣

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
Week 22 of 2026 Weekly 1️⃣ Off to see my foot doc Week 22 of 2026 Weekly

1️⃣ Off to see my foot doc … and my foot is healing! Yay!
2️⃣ A very cool notification to get!
3️⃣ This is 35 🎂
4️⃣ Featuring Harley snuggles 
5️⃣ And then it was my mom’s birthday! 
6️⃣ With Harley again 

ID: 
1️⃣ Kate takes a mirror selfie 
2️⃣ a notification from WordPress saying “Receive views from 150+ counties. The United Nations has nothing on you!”
3️⃣ Kate smiles for the camera in a cafe 
4️⃣ Kate in the same outfit with Harley the golden retriever on her lap. 
5️⃣ Kate’s mom smiling in a restaurant 
6️⃣ Kate with Harley again 

#GoldenRetrieversOfInstagram #ChronicallyIll #ChronicPain #InvisibleIllness
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