Uveitis

For once in the 16 years of having Infusions I forgot to be proactive and call the office to schedule my appointment. For reference, I get my infusions every 4 weeks and around the 3 1/2 mark I start to become more achy and stiff.

Well, the office called me at the three week mark and I was given two options, one appointment being at 5 weeks and the other appointment being at 6 weeks. I had to take the 6 week appointment because of a prior work obligation.

I’m a week away from my appointment and I’m on day 2 of waking up at 2 am with my extremities throbbing. My dominant hand hurts if I touch it which isn’t ideal. And i’m a bit emotionally and mentally tired of putting a smile on my face and showing up to work/showing up for people at work.

Oh and I’m supposed to go on a first date this weekend but I’m having a hard time imagining going out and having an enjoying time.

While I feel like I’m focusing on the negatives I am reminded of how much my infusions do work and help. I’ve been getting my infusions for more than half my life so it’s hard to remember life before my infusions. I’m about to make an infusion count down because this has been a humbling experience. #RheumatoidArthritis #ChronicPain #Anxiety #Glaucoma #Uveitis #MentalHealth

Hello everyone, I hope you’re all doing well. Because of ankylosing spondylitis and the medications for it, is it common to feel constantly exhausted and struggle to finish work on time? How do you manage frequent delays and cancellations? #AnkylosingSpondylitis #ChronicFatigue #Uveitis #MentalHealth

I’m in my second week of attending daily 30-minute meditation classes, and I already feel like I’ve learned so much. One major theme my class has been focusing on is “surrender.” To surrender is to let go of the ego and allow yourself to be fully present with the moment as it is.

I keep returning to the question: What does it mean for me to surrender?

When I experience a neurocardiogenic syncope episode, surrendering means accepting and acknowledging what’s happening, without letting it define me.

When I go to a routine eye appointment for pressure checks, surrendering means trusting that I’m doing my part: taking my medication, using my eye drops, and allowing my medical providers to make the best decisions for my care.
I could go on and on.

Surrendering is hard. Our ego loves to get in the way. But for the first time, I truly feel like I’m re-wiring my brain.
#MentalHealth #Anxiety #Glaucoma #Uveitis #Blindness #NeurocardiogenicSyncope #HypothyroidismUnderactiveThyroidDisease

General health appointments: 5

Specialist appointments: 12 (rhuemotology, ophthalmology, podiatry, endocrinology)

Allergy: 20 appointments, 76 allergy shots

Infusion: 13 appointments, 32.5 hours sitting in the infusion center

Imaging/testing (not labs): 2 MRIs, 2 1-week long heart monitors, 1 stress test, 1 tilt table test, 1 heart ultrasound

Mobility aids: 2 mobility aids added to my daily routine

- - - - -

Pre syncope episodes: 3

Vertigo episodes: 5

Anxiety Attacks: 2

I’m proud of myself for speaking up to my doctors about a symptom I’ve experienced my whole life but no one has ever looked into. I’m proud of all the ground techniques I’ve learned this year. I’m happy I found 2 apps that help me with mental health and health record keeping. I’m also very proud of my mom who started her chronic health journey with Parkinson’s this year. She is going to speech classes and sharing information with us (family). Her new diagnosis is frustrating and exhausting but she’s learning and still doing things she loves. 2026, please be gentle to us.

#Uveitis #Glaucoma #ParkinsonsDisease #MentalHealth #Anxiety #ChronicPain #Presyncope #NeurocardiogenicSyncope #AutoimmuneDiseases

Hi, my name is Warrioress1109. I'm here because I'd like to know anyone can offer advice on how to get an appointment with a physician specializing in MS. I've not been diagnosed with MS, nor has it ever been suggested to. I've been suffering with a multitude of increasingly debilitating illnesses and symptoms for over 30 years now. Seen by a long list of specialists. Tests, procedures, medications...targeted to a specific complaint. None of the neurology, rheumatology or ortho specialists have/are taking my comprehensive medical history into account. Which I believe is why existing and new symptoms have gotten worse over the years. In doing research on my own, I found that all of my symptoms & ilnesses have been seen in persons diagnosed with MS - in all or in part. I'd like to find out or rule out MS as a cause.

#MightyTogether #Anxiety #Depression #Fibromyalgia #EatingDisorder #Osteoporosis #Uveitis #dry eye #RaynaudsPhenomenon #BackPain #CarpalTunnelSyndrome #Vertigo #MixedConnectiveTissueDiseaseMCTD

I was told I suck, I’m lazy, and oh yea the gluten free food I can eat is terrible. You might be asking, “Why would someone say this?”. Because I had to cancel dinner plans due to a flareup. I guess I need to date a few frogs before I meet Prince Charming but man, can the next frog be a little nicer?

I tend to open up about my health early because I’m always nervous I will have a flareup, I’ll need to cancel, and they won’t understand. Welp even if you tell someone, they still might not listen/understand and resort to calling you names.

Anyone have similar experiences? I feel like I need to write a book at this point, “Dating stories: Chronic Illness Edition”.
#Arthritis #ChronicPain #Uveitis #Glaucoma #HypothyroidismUnderactiveThyroidDisease

Hi!. I'm here because

#MightyTogether #Arthritis #Uveitis #OCD #ADHD

Hi! I'm new to the group, but not new to auto immune disease. I'm 62 and have been battling since I was 46 years old. I deal with psoriatic arthritis and lupus and all the symptoms that come with both, some old ones, some new. Today, I am dealing with uveitis and bronchitis. Would love to talk with folks who deal with both psoriatic arthritis and lupus.

Hey, nice to see an ankspond community- we're a special bag of bugs alright, lol.
I've had AS since childhood but was diagnosed with hysteria. eventually I put them straight. have had diagnosis since.my 2 girls have early onset AS.
I have complications with iritis, uveitis, vitreitis, is there anyone else dealing with losing their sight? I am struggling. the health system here is biased, broken&beyond a joke. all eye pressure drops have preservative. I'm supposed to take 17 topical applications a day of various atm. waiting for surgery for pressure.I'm allergic to all the pressure med preservatives. I have developed glaucoma in rt eye, which is also a mess from wrong lense in 2009 surgery. my eyes struggle from regular flares & meds.sore, dry, irritated. looking for natural relief tips? and anyone who also has eye AS as complication?would love to have a mutual b*tching sesh lol!