Thread by @RoboNeen

I'm 1 of 50 million Americans living with an immune system that mistakenly attacks/damages healthy tissue (rude). During #AutoimmuneAwarenessMonth we strive to promote better understanding of these complex chronic conditions. Follow me as I share my journey this month.

2) It takes an average of 4.5 years and 4 physicians for patients to recieve an autoimmune diagnosis:
-Many conditions mimic others
-Lab tests are not always definitive
-Symptoms flare and dissipate frequently
-Diseases often appear in clusters
#AutoimmuneAwarenessMonth

3) This is me at 32, a month before I woke up 1 day + couldn't walk. Days later I couldn't bend my fingers. Bilateral pain/swelling + fam history of #rheumatoidarthritis prompted labs. Sky high CRP, ESR, rheumatoid factor sent me to a #rheumatologist.
#AutoimmuneAwarenessMonth

4) By April 2018, I was back on my feet by the grace of prednisone. (A 🔥 extinguisher, not long-term solution.) I was diagnosed with #rheumatoidarthritis in May 2018 and posted a gif of The Rock saying, "Bring it on."
#AutoimmuneAwarenessMonth

5) The 1st 6 months with #RA were a humbling learning curve. I went from deadlifting 300# to being unable to pick up my 30# dog and I muscle-wasted 50#. I was constantly fatigued. Pain sucks, but the loss of identity was what I struggled with the most. #AutoimmuneAwarenessMonth

6) Treatment started as a 2-pronged approach: Methotrexate (a disease-modifying antirheumatic) and a biologic anti-TNF drug to target excess of a protein in the body that causes inflammation. 1st biologic was Enbrel, which I learned to self-inject.
#AutoimmuneAwarenessMonth

7) My insurance at the time was BAD + wouldn't cover biologics, but the drug co offered a copay card (in exchange for selling my medical info). It was that or be unable to walk. A small example of the difficult choices people with chronic illness make.
#AutoimmuneAwarenessMonth

8) There was a lot of "no" when I tried to do things that 1st year w/ #RA. I'd lost my job and my students. My body was unreliable. But I taught myself to focus on each small "yes." Baking, taking chair yoga class, sewing, or being able to walk my dogs.
#AutoimmuneAwarenessMonth

9) In the fall of 2018, I was moving better but exhausted. Figured it was #RA fatigue until I felt like I couldn't breathe when I laid down. ER did echo, EKG, labs, but only saw a bit of fluid. Treated 4 pericarditis (steroids + sleep upright).
#AutoimmuneAwarenessMonth

10) Spoiler alert: It wasn't pericarditis. I blacked out and fell in my house a week later. Then 6 more times in a half-hour. Then at registration at the ER. I was admitted to VHC and kept for observation when they could find no immediate problem.
#AutoimmuneAwarenessMonth

11) Overnight, my heart rate dipped into the 30s a few times. In the AM, my now cardiologist laid me down flat and it immediately dropped into the 20s. There was a conference in the hall outside my room.
#AutoimmuneAwarenessMonth

12) I had a 3rd degree AV block, a complete loss of electrical signal between the atria and ventricles. Perfectly fine heart muscle, just no signals going through. And thus, no regular heartbeat. Hearing this was terrifying.
#AutoimmuneAwarenessMonth

13) A temporary pacing wire was placed. Was awake for that procedure and it's WEIRD. They fed a wire through a neck vein down to my heart. Sadly it failed later that night and I woke up surrounded by a lot of alarms and people in the cardiac ICU.
#AutoimmuneAwarenessMonth

14) On 12/4/18, I got my extra life! The permanent pacemaker was placed and it had a profound impact on me. I made a promise to myself that I wouldn't waste the gift. I'd get my RA under control, build a life worth living, and never give up. #AutoimmuneAwarenessMonth

15) 2019: A year of recalibrating. After pacemaker surgery, I started Remicade + could *finally* weightlift for the 1s time since RA. Started a new job as a cheesemonger (so fun). Ups + downs: Some days a barbell on my back, some walking with a cane.
#AutoimmuneAwarenessMonth

16) I had to relearn training and didn't respond/recover the way I did before #RA. Flares set me back for weeks and my grip was less reliable. But a year after pacemaker surgery, I pulled 325# off the floor. It was empowering and I felt hopeful.
#AutoimmuneAwarenessMonth

17) 2020: I've never forgotten 'early pandemic.' The shop was slammed with online orders we put on the porch when customers picked up. I worked the 1st 3 months w/o a day off. We couldn't see our families, so we stayed at the shop to avoid being alone.
#AutoimmuneAwarenessMonth

18) I went to the hospital for pacer adjustments and Remicade infusions. My docs/nurses had the same worn look I saw on my coworkers' faces, the same exhaustion of needing to work w/ people and not knowing what that meant for their safety.
#AutoimmuneAwarenessMonth

19) I started feeling strange. Turned out BP + HR weren't staying elevated when training. The #dysautonomia that caused the AV block reared its head. More salt in my diet + a little caffeine wouldn't hurt . Who ever hears that from their cardiologist? 🤣
#AutoimmuneAwarenessMonth

20) Here's a video I made that year titled, "Life with Rheumatoid Arthritis - Autoimmune Disease Awareness Month 2020." (Damn, that blonde hair was rad): via @YouTube

#AutoimmuneAwarenessMonth

21) Forced adaptation was the theme of 2020. Mindset was key in learning to manage RA+ANS dysfunction. I could not choose the body I had, but I could control my actions. I tried to practice wisdom and work toward my physical goals mindfully.
#AutoimmuneAwarenessMonth

22) I've always been a goal-oriented person, so I gave myself a challenge: to swing my mace in every state. Macework/kettlebell work were (and still are) a huge part of me being able to continue strength training with RA. I'd see the US + share my story.
#AutoimmuneAwarenessMonth

23) I had to plan mindfully. I worked Wed-Sun, so for trips I'd fly out late-night on a Sun, hike/swing in several states and fly back pre-dawn Wednesday before my shift. Also had to consider how I'd handle unexpected flares/make time for recovery.
#AutoimmuneAwarenessMonth

24) Sometimes this meant I'd get somewhere + take the shorter hike, sometimes it meant I'd take the longer one and find a CVS to get some epsom salts for a bath afterward, and sometimes it meant changing plans entirely. Pivot. Adapt. Find the yes.
#AutoimmuneAwarenessMonth

25) Right before a longer trip in the fall of 2021 to hike in all 6 New England states, I went to get a haircut and my stylist noticed a quarter-sized bare spot on the back of my scalp. "Just stress," I thought.
#AutoimmuneAwarenessMonth

26) A month later, it was clear that I had #alopecia. There were treatments, but I didn't want to add to what I was on for #RA. (I did put up a poll on IG to ask others what they saw in the Rorschach test on my head. 🤣) Hey, you have to laugh at things.
#AutoimmuneAwarenessMonth

27) I felt overwhelmed. Weird echo results, persistent flares, hair falling out.. I hiked Palo Duro Canyon in TX + reflected on my choices. I'd hiked in 36 states by then, and I wouldn't trade that for anything. That trip revived my determination.
#AutoimmuneAwarenessMonth

28) I went home for Thanksgiving + my dad shaved the little hair I had left. For awhile, it still grew in a few spots, but by early 2022 it stopped. By May I'd lost my brows, lashes, and body hair. #Alopecia onset happened rapidly + adjustment was hard.
#AutoimmuneAwarenessMonth

29) My usual response to health things I can't control is humor. I mused cosplays of Lex Luthor, Agent 47, Kingpin, or Mr. Clean. But early 2022 challenged me. My #Remicade dose more than doubled, then insurance forced a switch to biosimilar #Avsola.
#AutoimmuneAwarenessMonth

30) What I think is hardest to describe about #rheumatoidarthritis is how unpredictable it is. I can "look healthy" because I post a photo outside for a run, but also not be able to drive because my fingers are too swollen to hold the steering wheel.
#AutoimmuneAwarenessMonth

31) Tried to increase freq. of Avsola, but it led to infections left and right. Doc was hesitant to change meds because it was still working *enough.* As much as it frustrated me, I got it. You don't want to jump from drug to drug and run out of options.
#AutoimmuneAwarenessMonth

32) An enormous positive change in 2022 was having in-person support. I'd lived alone in VA and when I moved to MD to be with my (incredible) partner, I also gained a wonderful group of friends. Having this family here has been life-changing.
#AutoimmuneAwarenessMonth

33) In many ways #rheumatoidarthritis has been a great teacher. Wisdom is being able to discern when it's valuable to struggle through a difficult time/task quietly and when to seek help. Problem-solving is an essential skill! But so is collaboration.
#AutoimmuneAwarenessMonth

34) It's easy to feel self-conscious about asking for help because we want to be seen as capable/reliable. People who value and care will support you, + feel safe to be forthright when they need help too. This is how strong relationships are built.
#AutoimmuneAwarenessMonth

35) Office for the morning: 2nd xolair shot! Now wait, what's this? Remember how I said that autoimmune diseases come in clusters? In Dec I had a few hives. By Feb, they covered 50-70% of my body + are unresponsive to all doses/types of antihistamine.
#AutoimmuneAwarenessMonth

36) My immune system essentially decided that I am allergic to me (You can't make this up) and responded with chronic hives . Xolair is a biologic to treat it, but has a high risk of anaphylaxis, so I hang around the office for 2 hr post-shot.
#AutoimmuneAwarenessMonth

37) I am fortunate to have a job now that is conducive to telework, so I've Zoom-ed during 3 hr infusions and am editing here today. Chronic urticaria is the wildest curveball yet and I'm not able to sleep through the night yet, but I am hopeful!
#AutoimmuneAwarenessMonth

38) After my 1st xolair shot, nothing changed. Biologics can take 3-6 months to be effective. I've learned that I can't put my life on hold + wait to feel better bc it might be a long time before I do. So I get out there + enjoy it all as much as I can.
#AutoimmuneAwarenessMonth

39) It's been almost exactly 5 years since I developed #RA and it changed the trajectory of my path. It's easy to feel like a lot has been stolen. I have my moments of grief + frustration, but I've also cultivated deep gratitude + a sense of celebration.
#AutoimmuneAwarenessMonth

40) To get outside, swing my mace, *still be here* + be with others, it's all a gift. Celebrate birthdays, anniversaries, silly made up holidays bc why not? I can't control the hand I was dealt but I can choose how to play it.
#AutoimmuneAwarenessMonth
@NAAF_org @AutoimmuneAssoc

41) As #AutoimmuneAwarenessMonth winds down, I recall words from a journal entry: "I paint silver on the edges of all that surrounds me." That encapsulates my chosen coping method. It is tempting to despair, especially when flares are brutal. But what would I gain from that?

42) Since 1st diagnosis, I've traveled to 38 states to hike, restarted my career, moved to a new home, found @AdmiralTurtle + a family of friends. Living with health challenges has imbued me with a sense of "Say/do it now and don't *wish* you did."
#AutoimmuneAwarenessMonth

43) Today was a 1st app w/ a doc I've been waiting to see for 9 months. While I was describing how I've felt over time, he stopped me briefly and said, "You keep saying it's okay, but you don't need to sugarcoat it."
#AutoimmuneAwarenessMonth

44) I think it's easy to say you feel "good enough" because you're functional. After awhile, the goalposts move and that becomes the baseline. In trying to manage expectations, I've kept them minimal to avoid disappointment if treatment fails.
#AutoimmuneAwarenessMonth

45) Perhaps there is a better balance to strike there between not looking for a silver bullet and still striving to feel better than "good enough." But it requires patients to advocate for themselves and be honest with their medical teams.
#AutoimmuneAwarenessMonth

46) Of all I've learned a lot about #rheumatoidarthritis in 5 yrs, I still haven't learned to not try to use my Google-fu to interpret flagged lab results when they show up in MyChart. 🤣
#AutoimmuneAwarenessMonth

47) As #AutoimmuneAwarenessMonth comes to a close + I look back over this thread, the words from #undertale I have tattooed on my left forearm are what I return to: "Stay Determined."

Pivot. Recalibrate. Adapt. And never, ever stop getting back up.

@NAAF_org @AutoimmuneAssoc