I'm so grateful to have a spouse who makes me laugh til I cry, who makes the most delicious gluten free baked goods, who supports my ambition to become a mental health counselor whole-heartedly, who knows how to plan a fun date night in, and who supports me when my soul and my body hurt.
❤️😘
Wishing you all a lovely, low-pain Valentine's Day! 💕
This picture is from our 1 year anniversary trip to Punta Cana, Dominican Republic back in 2018.
🏖️🌊
[Alt-text: a couple standing on the beach at sunset. The woman is wearing a red floral knee length dress and is bare-footed. The man is wearing navy pants and a white button down shirt.]
#happyvalentinesday❤️ #spoonielove #spooniesupport #spooniewife #clinicalcopilot #migrainesupport #chronicmigraine #potsiegirl #spondyloarthritis #butyoudontlooksick #puntacanadominicanrepublic #majesticcolonialpuntacana #honeymooners #spoonieromance #spoonievalentine
Back in August when I got my spondylitis diagnosis, I was an emotional mess for uhhh well.... Months, tbh. I had expected to feel only relief because I had been waiting for answers for so long, but instead I felt like I had stepped onto a hellish emotional roller coaster of highs and lows 🎢 and the only way off it was to FEEL ALL THE FEELINGS until eventually a calm, quiet acceptance started to finally creep in. 🥺
To my surprise, even though I've already been through the diagnosis process before with spondylitis and chronic migraine, these same emotions still swept me off my feet when I got my POTS diagnosis about 2 weeks ago. I should have expected it. This time, at least, I know acceptance WILL come. It just takes time. And I also know that I don't have any more unexplained symptoms at the moment, so hopefully **knock on wood** this is the final time I ever have to ride this particular rollercoaster.
Who else is experiencing a lot of contradicting and overwhelming emotions after a new diagnosis? 💜 Let me know ⬇️
And if you repost, as always, please tag me in the caption. ☺️
[Alt-text: light teal background with large black text that reads, "One new diagnosis, lots of contradicting emotions." Below that there are white lines in the shape of a T forming a table. On the left side it lists all the negative emotions, "Grief: How am I going to cope with this forever? Isolation: None of my friends or family really understand. Fear: Will my symptoms ever get any better? Anger: How did my doctors not catch this sooner? Denial: Surely this can't be my new normal?" On the right side it reads all the positive emotions, "Relief: Thank God I finally know why I'm sick. Belonging: I have an online support community who can help. Hope: I can't cure this, but I can manage it. Gratitude: I'm lucky my doctors eventually figured it out. Acceptance: It sucks that this is chronic but I'll be okay."I ]
#chronicmigraine
#undifferentiatedspondylitis
#ankylosingspondylitis
#potssyndrome
#newdiagnosis #medicalgaslighting #believespoonies #butyoudontlooksick #neverthelesswepersist #psychologystudent #futurecounselor #anxietyrecovery #griefsupport #traumasurvivor
It turns out that being a sick and disabled student is REALLY tough.
📚
I know that's not a surprise to any of you. But almost my entire experience as a student the first time around was as an able-bodied person. I didn't become disabled until my last semester of senior year, so most of the barriers I have faced have been on the job... Somehow I thought school would be manageable by comparison.
But now I'm three weeks in to my first semester of in person classes, and it seems like all of my symptoms are flaring. My joints are stiff and sore. My migraine, which had almost been episodic for a couple months, is now QUITE chronic. I'm feeling nauseous, foggy, anxious, and tired.
Accessibility services has been very helpful in some ways: They've given me flexible attendance & deadlines. Annnd they've been a pain in the butt in other ways: They can't do anything about the super bright florescent classroom lights, I've been having to fill out endless paperwork as I schedule proctored exams, and they encouraged me to share a bit of medical info with my profs, which I now regret. I've already had one prof ask me a million personal questions about my illnesses and another put up a lot of resistance against the flexible attendance policy that accessibility services recommended.
Furthermore I've had a few students I don't know yet ask me, "What are the pink glasses for?" 😎 I try to polite and say, "Hi! 🙋🏼♀️ these are my migraine glasses." But the truth is, the question makes me uncomfortable now. Being visible about my disability doesn't give healthy folks permission to ask about my disability before they even get to know me!
I'm so grateful to be back in school, but it's all been a bit overwhelming! Other fellow spoonie students, how do you cope with being chronically ill/disabled at school?
[Alt-text: Me, a white woman with long straight red hair in a gray hoodie and black leggings, sitting at a white desk working on a laptop. My teal backpack is in the foreground. There's a window with snowy trees in the background.]
#undifferentiatedspondylitis #ankylosingspondylitis #chronicmigraine #migraineadvocate #potssyndrome #potsielife #disabledstudent
I love this support & advocacy community, and I want to do my best to lift up everyone's voices.
If there's anything I can do to better support you and your disability advocacy mission, or if you're interested in collaborating, please reach out and let me know! We're stronger together. 🙌💪
If you repost this image, please credit me in the caption. ☺️
Also - I recently launched a Buy Me a Coffee account at buymeacoffee.com/autoimmuneabbey, link in bio. If my advocacy work resonates and you want to show some extra love, you can contribute $3, the price of a coffee. ☕
[Alt-text: white background with royal blue text that says, "SICK BABES SUPPORT SICK BABES." Below that text there's an illustration of three women holding flags. The one on the left is sitting in a wheelchair with a large blue flag that says "END THE ABLEISM." The one in the middle is standing and holding a small red flag that says, "WE'RE NOT FAKING." The one on the right is standing and holding a small red flag that says, "BELIEVE SPOONIES".]
#believespoonies #believeus #believewomen #patientsarenotfaking #ableismexists #ableismawareness #disabilityawareness #disabilityadvocacy #disabledandcute #sickbabes #intersectionalfeminism #babeswithmobilityaids #butyoudontlooksick #chronicillness #chronicpain #chronicmigraine #autoimmunearthritis #autoimmunedisease #mecfswarrior #potssyndrome #fibromyalgiawarrior
Shout-out to all the doctors out there who are fighting for their patients and doing their best to end the medical trauma cycle. 🙌 We're so grateful for you.
I talk a lot about bad doctors because I'm recovering from some traumatic medical experiences.
But I want to acknowledge the great doctors out there, because they DO exist, and they've changed my life. And some of them are spoonies themselves. 🥄
I'm very lucky to have a rheumatologist and a primary care provider who understand chronic pain and chronic illness because they live with it too. Besides just being spoonies (which automatically makes me respect and appreciate them) these doctors are exceptional in that they:
🌟 Always trust my expertise on my own illness - unless they have really good reason to believe I'm wrong.
🌟 Are thorough in the diagnostic process and recognize how valuable an accurate diagnosis is to a chronically ill patient.
🌟 Communicate in a clear, respectful, direct and timely manner via the patient portal.
🌟 Respect my right to have a say in what medications I'm on and my right to stop any medication that is causing serious side effects immediately if it's safe to do so.
🌟 Are open to my feedback and ideas.
🌟 Refer me to someone with more expertise when they are unable to help.
DM me if you're in the KC area and need a recommendation for a great rheumy or GP.
[Alt-text: a photo of a medical examination room with white walls, a sink, and an exam table ]
#invisibleillness #invisibledisability #medicalgaslighting #medicaltrauma #chronicmigraine #autoimmunearthritis #autoimmunedisease #primarycareprovider #rheumatology #spondyloarthritis #ankylosingspondylitis #potssyndrome #potsielife #dysautonomia #believespoonies
So you know how I shared with you all my frustrations about not being diagnosed with POTS after a positive tilt table test and tons of other evidence supporting a POTS diagnosis?
Well.... I emailed that doctor to express some of those same frustrations. I wasn't expecting anything to come from it. I just wanted to get what happened documented in my charts before I started my search for a new specialist.
But believe it or not, my cardiologist called me PERSONALLY TO APOLOGIZE. From his cellphone number, while on vacation. I'm still flabbergasted, because I've never had a specialist apologize or admit that they made a mistake, let alone call me personally to tell me. He basically said POTS is a spectrum and that although my tachycardia would suggest I'm on the mild end of that spectrum, the diagnosis does seem quite plausible given all the other signs, symptoms, and test results. He asked me to send him more poor man's tilt table test results so he could reevaluate the evidence. I sent him three of them and every other bit of data I had to support my suspected diagnosis, including my symptoms and prior test results.
Then to my great relief, he diagnosed me a couple days later via email.
So it's official now. To literally no-one's surprise (except my cardiologist) I have POTS. I'm glad to have an explanation for the 20+ symptoms that have been a mystery for years
It's wild to look back on the many illnesses I had to rule out first (Lyme, lupus, MS, sjogren's, fibro, et al) the dozens of specialists I saw, and the fact that no-one ever put the pieces together until shortly after #dysautonomiaawarenessmonth , when a couple of my awesome POTSy friends here pointed out to me that I totally had all the classic symptoms.
🧂🥄💙
[Alt-text: a bright teal colored background with a list of POTS symptoms in a slightly lighter shade of teal atop it. In the fore-ground, on the left in black font, it says, "It was POTS all along." To the right of that text is a cheery looking cartoon of a salt shaker with a huge grin.]
#dysautonomiaawareness #dysautonomiawarrior #thedysautonomiaproject #potsawareness #potssyndrome #potsiegirl #believespoonies
There's a vibrant, rapidly growing migraine advocacy community on Instagram. We created this collage to celebrate a few of the leaders in this community and foster new connections within the community.
💜🧠🙌
@mindfulmigraine - Natalie is honest and open about the highs and lows of life with chronic migraine, and her hope and resilience make her an admired leader in the community.
@the_migraine_life - Amy has made waves with her hope, her honesty about mental health, and her #mightywithmigraine campaign.
@pinksaltcollective is a supportive, funny, outgoing warrior who makes a point to connect personally with everyone in her community. Her (still new!) account is growing rapidly because of her humor and positivity.
@through.the.fibro.fog - Claire is a kind friend to so many in the chronic illness community, and she's made an impact as a leader and a fearless advocate in the migraine community.
@beautyandthemigrainebeast1 - Pamela is a brave, supportive, candid mom and advocate who reminds us all that it's okay not to be okay when you're living with debilitating pain.
@the_mindful_migraineur - Emily is a gentle, hopeful, positive mom who provides inspiration and support to all, despite her high pain levels.
@movementwithmigraine - Emily is an expert in accessible fitness (especially yoga) and #meditationwithmigraine, she's a kind friend to all, a mom, and a ray of sunshine in the migraine community.
@pain.inthe.head - Steph is an outgoing, adventurous mom with a gorgeous feed who is fighting ableism and stigma against headache & migraine one post at a time.
We know that we've only scratched the surface of the HUGE online migraine community. 🙌 That's why we're working on a second post to feature 32 other migraine advocates.
If you repost this picture, please credit me (@autoimmuneabbey) and @mecfswarrior in the caption. ☺️
[Alt-text: a tiled collage of 8 women and their Instagram user-names with a teal tile in the center that says "The Migraine Community at a Glance"]
Inspired by @invisiblyillfox's recent series on chronic illness & grief. 💜
My own personal experience with chronic illness grief looks like this, on repeat:
Denial: "Surely there's got to be an easy fix for this... I can't just be sick forever." 🤔
Bargaining: "Maybe if I avoid all my trigger foods, sleep a lot, eat green smoothies, do yoga, walk every day, spend lots of money on supplements, and go to PT and therapy every week, I'll go into remission and I can be normal again." 😬
Anger: **observing ableds do all the things I wish I could still do but can't now bc of my health** "So many people take their health for granted. Meanwhile I'm a 26 year old with the body of a 70 year old, despite all my best efforts to advocate for my health-care and take care of myself! That's not fair." 😠
Depression: "I'm failing at being a sick person. I don't deserve support, accommodations, or love. How can I cope with this pain for the rest of my life?" 😔
Acceptance: "I can make meaning out of loss and be happy despite my illness. I've made new friends and found new hobbies and passions because of my illness. I've grown and matured because of my illness. Life may never return to normal, but I'm resilient, and I'll be okay in the end." 😌
Chronic illness is an ongoing reckoning with grief. And for anyone who's just at the beginning of this grieving process: Please know that it gets easier. Eventually, you'll start feeling more regular hope and acceptance. 💜
[Alt-text: white background with black sketches of flowers and black text that reads, "Chronic Illness Grief is Real. It's okay if you go through the five stages of grief again and again on repeat - denial, bargaining, anger, depression, acceptance. You've lost your health and it's normal to be devastated by that."]
#medicaltrauma #butyoudontlooksick #believespoonies #chronicmigraine #dysautonomiawarrior #autoimmunedisease #potssyndrome #potsiestrong #griefrecovery #griefsupport #depressionsupport #anxietysupport #traumasurvivor #mentalhealthawareness #chronicpain #invisibledisability #endthestigma #fivestagesofgrief
Feeling devastated, confused, and furious after yet another experience with #medicalgaslighting. I'm hoping I can harness that fury to find a way to get myself to a proper #dysautonomia specialist. But for now, I'm just trying to let my body and spirit recover a bit - that means lots of walks, Netflix, therapy, and of course lots of conversations with my support system, especially you all & Aaron. ❤️😔
I finally had my long-awaited tilt table test yesterday, and here's what happened:
My heart rate increased 46 bpm from my resting heart rate when they did the 20 minute tilt 📈 I was nauseous and woozy the whole time. Then when they administered the isoproterenol, my heart rate promptly skyrocketed another 50-something bpm and I fainted. I woke up dry-heaving with the taste of tums (the only thing I had consumed in the past 6 hours) and stomach bile in my mouth. I was drenched in sweat and evidently pale. My ears were ringing and my visual snow (which is normally transparent) was almost opaque.
When the doctor found my husband he told him, "So, her heart rate skyrocketed and it stayed high, and we made her faint! She doesn't have POTS!"
Aaron said, "I'm sorry, did you say she DOES have POTS?"
The doctor said "Nope, it's not POTS. She should exercise more often."
And that's it. I had a positive test result, but I wasn't given the closure or the clarity that a POTS diagnosis would have offered.
On a regular basis, I experience:
nausea,
chronic headaches,
migraine attacks,
visual disturbances,
lightheadedness & tachy upon standing and while showering,
shakiness,
IBS,
parasomnia,
impaired motor skills,
brain fog,
sensory sensitivity,
excessive thirst & urination,
swollen red feet,
variable body temp & blood pressure.
I came back positive on my holter monitor and showed a hyperadrenergic response upon standing in my blood work. I've now fainted 5 times. How many more signs & symptoms do I have to demonstrate before I can get the diagnosis and closure I need?
Thank you to all who have talked me through this and reached out in the last 24 hours. ❤️ You truly have no idea how much your support means
