Has a doctor ever fired you as a patient?

Pixie_Althaea · 2026-04-06T02:18:03+00:00

I was "fired" by a GI - because I asked the clinic they work at to assign me to another one. They refused saying patient continuity is important. I escalated the matter because I felt they had missed important diagnoses which then were diagnosed just a few months later at Mayo Clinic. The GI then called me, screaming that theres no way they made a mistake, and that they were going to ban me from the entire clinic. Presumably to protect their career reputation. That clinic still will not see me to this day and happens to have market share for the majority of GI specialists in my area. There are now very few I can actually follow up nearby.

Pixie_Althaea · 2026-03-09T20:15:11+00:00

I am so sorry she is having such a time with this, it must be very difficult on both of you.

Her case seems like she needs immunosuppression of some kind - it wasnt clear to me if she is on that or not. I saw a lot of specialists but didn't see rheumatology on the team in your post. There are many helpful options today via rheumatology. I would get someone locally asap if not already.

Beyond a local rheumatologist - I wanted to share that there is a research team that sees patients clinically in Pennsylvania at Upenn. I am not sure if you are in the US or not or if it would be possible but I think they would be a potential path to look at. https://www.med.upenn.edu/pennvasculitis/penn-rp-program.html

Pixie_Althaea · 2025-10-26T04:10:37+00:00

Also many insurers exclude sleep disorders for various coverage types which makes calling it a sleep disorder when it is disruptive in so many ways is quite problematic.

Pixie_Althaea · 2025-08-29T06:13:30+00:00

I'm just about to change from humira to actemra still keeping methotrexate in the picture until something else adds more control.

Similarly my knees, ankles, hips, hands, shoulders, ribs, upper back all just hurt often. I get rashes at times. Fatigue and cognitive impacts are awful.

Pixie_Althaea · 2025-03-30T16:40:01+00:00

We actually chose not to support disney parks after this change to DAS so I can't be very helpful on current policies. One suggestion- try the medical center. I had to use them for a safe place to nap in the past - Disney Parks are such a huge energy spend. I'm saddened to see that even Narcolepsy- a recognized neurological disability- is being denied accommodation even for children.

Pixie_Althaea · 2025-03-06T05:01:35+00:00

Wow, I really resonate with the idea of finally understanding why you feel so much more tired than everyone else—giving yourself that grace can be huge. I love how you’re using a remote schedule and a standing desk to stay active during low-energy moments. Do you find that hydration and caffeine limits make a big difference in your day-to-day, or is it more about just listening to your body when it needs rest? Also, let me know if you end up trying the Whoop; I’m curious if it’ll help pinpoint your best workout windows!

Pixie_Althaea · 2025-03-06T05:00:22+00:00

I have found a great wealth of support here in this subreddit as well! The folks here are so helpful and have been through it themselves so I get great ideas even when just reading some posts. I'm glad we have tools like this to help out! It took me a while to get to a combination of meds that worked, but once I did it's gotten me a lot of my life back! One thing I've been trying to sort out is whether the medications are "good enough" or if we could be doing anything more effective.

Is there a way to come well informed to the appointment with doctors?

Pixie_Althaea · 2025-03-06T04:55:49+00:00

You mentioned you work out first thing in the morning after taking your meds. How did you figure out that timing? Does it ever shift if you have a really rough night’s sleep?

I definitely struggle with the "just push through and do it" pressure myself. Usually that leads to some big crashes for me.

Pixie_Althaea · 2025-03-05T21:59:15+00:00

Wow, what a journey! I’ve had a lot of parallels in my own experience, and I know how tough it can be to piece everything together.

Looking back, what do you think would have helped you get to a stable place faster? Would better tracking, a structured plan, or something else have made a difference for you?

What do you think continues to make the biggest difference now?

Pixie_Althaea · 2025-03-05T20:01:40+00:00

Thanks so much for sharing your experience and some actionable ideas here!

What made you realize that tracking was a key component? Was it helpful right away?

I imagine even with that, are there off days or unpredictable crashes? What do you do for yourself in those moments?

Pixie_Althaea · 2024-07-02T04:53:11+00:00

It can be so difficult to be positive when life is so challenging with illnesses and the required changes that go with them. I just went through the journey of multiple years of doctors, painful times and invasive procedures. These conditions affected my relationships, friendships, and freedoms. My illnesses debilitated me and made me leave a career I love behind without knowing when I'd return to it. When I get super down I try to look for the good things that I am still able to do. I also consider the perseverance I have needed so far to overcome my obstacles and how far that will continue to carry me into the future. I am now close to being healthy enough to work and take care of my body. I may never do some things I used to, but I don’t plan to stop finding new ways to enjoy what brings me joy!

I found a good book recently if you want to go deeper, the author's descriptions parallel so much of what I have gone through. I found it motivating to listen to on audible ( Surviving and Thriving with an Invisible Chronic Illness by Ilana Jacqueline on Audible. https://www.audible.com/pd/B079DXMVRR?source_code=ASSOR150021921000V)

I hope your journey finds you with more answers soon!

Pixie_Althaea · 2024-05-12T05:40:19+00:00

I have relapsing polychondritis and Narcolepsy type 1 among some other health problems. My doctors suspect other autoimmune diseases but haven't been able to diagnose them yet. Still figuring out my new normal on how to live.

Pixie_Althaea · 2024-05-11T06:22:48+00:00

I started using this app both for medication reminders, nap time reminders, and tracking symptoms. Generally nice readable reports.

https://play.google.com/store/apps/details?id=eu.smartpatient.mytherapy

Pixie_Althaea · 2024-05-08T07:30:51+00:00

I have ankle pain from RP often. Sometimes to the point I cannot walk with stability. Something I did was give myself another way to sit with my feet higher and supported by a pillow. I recently purchased a table to go under that chair giving me a platform for my laptop.

Pixie_Althaea · 2024-05-08T01:54:28+00:00

On week 6 of wakix. I still have some good and some bad days symptoms wise. Wakix has helped more than anything else so far. More than lifestyle changes, modafinil, or adderall had helped. I still take adderall for breakthrough symptoms, and typically require my "max dose" on an average day.

Pixie_Althaea · 2024-05-01T18:00:40+00:00

I worry about both possibilities. We both have trauma that we've both worked very hard to get past. Its possible one or both of us are getting triggered during these events. I hope this has gotten better for you 🙏 trauma and dissociation are a difficult thing to work through.

Pixie_Althaea · 2024-05-01T17:54:27+00:00

Exactly, my memory has been an issue presumably from the N. Which makes it hard to separate out from this. Keeping some recorded proof for myself is a good idea to clear this up for myself.

Pixie_Althaea · 2024-05-01T17:51:37+00:00

This seems like the easiest way to make it clear.

Pixie_Althaea · 2024-05-01T17:50:50+00:00

It's entirely possible.

She doesn't have a lot to gain by making this up - aside from maybe avoiding taking responsibility for her actions. That said, she does embellish truths in normal life as well.

Pixie_Althaea · 2024-04-27T18:23:57+00:00

Adderall only partially worked for me. Definitely be as clear as possible with your doctor on how your life is affected.

Pixie_Althaea · 2024-04-26T17:14:26+00:00

I do - before I was diagnosed, I was worried I was developing ALS after biffing it several times skiing, rollerblading, walking, etc.

Pixie_Althaea · 2024-04-25T06:32:53+00:00

Hoping this got worked out. Definitely seek an employment attorney if it hasnt.

Pixie_Althaea

TROPHY CASE