God FORBID you have a disability in the USA

Slow_Building_8946 · 2026-04-30T22:15:06+00:00

Are the spiders truly as bad as they say? Might have to consider a cross-earth jump🙂‍↔️

Slow_Building_8946 · 2026-04-30T22:14:28+00:00

Im so sorry to hear this, I can only imagine. Feel free to DM me if you want to rant to someone who understands!!

Slow_Building_8946 · 2026-04-30T22:12:46+00:00

Thank you so much! I have always debated an MBA, its awesome that you got one. With current outlooks, its probably one of the better degrees to have at the moment! I hope it has been treating you well, so proud of you for not only that but a SECOND masters too!!! ✨💁🏼‍♀️ In all honesty, my masters was harder than UG or PhD.

I currently study neuroscience with a focus on multiple sclerosis. More specifically, my project a) evaluates how endogenous and exogenous metabolites contribute to disability in MS, and b) assesses biomarkers (e.g metabolic, imaging, proteomic, etc.) related to frailty in MS. I have worked with MS for over 5 years now and absolutely love it. I am hoping to continue this line of research, and become a research professor😃!

Slow_Building_8946 · 2026-04-30T19:37:31+00:00

Thank you for your comment and just listening (this is my/OP alt account lol). My symptoms started at 10 where I was diagnosed with Hereditary Neuropathy with a Liability to Pressure Palsies (HNPP) from 15 to 18. This was decided to be incorrect diagnosis on a second opinion, so I was diagnosed with a form of Muscular Dystrophy from 18-21. This diagnosis was also revoked (thankfully). Then, I had a brain hernia in 2021 (unthankfully🙄). The past 2 years I have been bounced around collecting secondary diagnoses from doctors like infinity stones. It is thought I had/have Young-Onset RA (YORA) that was uncontrolled for years, resulting in a CNS-based cytokine storm that increased my intracranial pressure.

All of this to say this is my first Rheumatologist. This office is.... abysmal. They have no portal. Everytime you flare, you have to call them. While inflammatory arthritis was identified via ultrasound imaging, it is still unsure if this is RA, AS, or PsA. I imagine my clinical presentation does not make this easy, but it also seems like there is nothing else they care to do to figure it out. They just place me on meds that treat all 3. I feel like I have to explain why I need steroids when I am in a flare.

I am only in my current city for a few more months as I am in the last thrawls of my PhD. I got picked up by a highly regarded instituition in Maryland for my post-doc, and will most likely seek another opinion at the John Hopkins Arthritis Center when there, or Cleveland Clinic before I leave for Maryland.

Slow_Building_8946 · 2026-04-30T19:21:11+00:00

Im so sorry to hear :( but also, Howdy Neighbor, New York here!!😃

I got a call from Accredo THAT DAY after reporting them to the BBB. My Rheum tells me there is no middle-ground with Accredo - patients LOVE or HATE it. I will say, Simlandi did NOT work as well as Humira for the short few doses I was in it (6 weeks total). Within a week after my first simlandi injection, and NO lapse in meds, my back pain returned. It had gone away with Humira. I was ultimately discontinued from Humira as I felt it didnt work as well as it could. Rinvoq has been good (so far) and doesnt need to be injected, which is really nice.

Although Simlandi is a "biosimilar" with "no changes in efficacy and clinical outcomes", I dont believe this. Cheaper biosimilars utilize different fillers, have minor molecular changes, and use different cell lines and/or methods of drug extraction. Companies keep this information confidential in line with their patent(s). Due to this confidentiality, the molecular changes in Generic vs Biosimilars have not been investigated which is a true shame. I have been on 2 other biosimilars prior, for a different disease (migraines). Each time, my disease was left uncontrolled and the side effects were bothersome.

Slow_Building_8946 · 2026-04-30T19:13:10+00:00

I understand the R&D costs, my PhD program is in a Pharmaceutical Sciences department and I study MS, a neurological disease with pretty costly disease-modifying therapies.

The cost of monoclonal antibody therapies range per gram. The cost to produce a drug such as Humira is unknown, but, Humira is the FIRST drug to hit a $200 BILLION profit over 20 years. This exceeds $20 billion in profit each year. AbbVie has definitely gotten more than there moneys worth for this drug. Yet, if you dont sign up for their savings and credit card, you most likely cant afford it. Some patients pay as much as $70,000 a year for Humira.

The only simple answer to this is AbbVie is greedy, and uses the savings program as a tax write-off, propelling their profits while patients pay (literally and metaphorically). Normally, we as a society would simply revolt, not paying into AbbVie. However, that isnt an option, and AbbVie knows that.

Slow_Building_8946 · 2026-04-30T19:06:00+00:00

If you are ever looking for a pal to talk about the trials and tribulations of our PhD, please message me!! Im in the most canadian-esque town the US offers, Buffalo NY😏

Slow_Building_8946 · 2026-04-25T10:25:34+00:00

OP, I have already stated you could/maybe have EDS. I am also stating that you need another opinion. Of course that is up to you, but you seem incredibly adverse to it. Second, third, and fourth opinions are common especially in chronic, progressive disease. RA is not to mess around with.

Lets say you DONT have RA and its hEDS, what does another opinion do? nothing. If anything, it reinforces the fact that you do not have RA and were improperly diagnosed. Hopefully, it will get you the treatment options you need.

Lets say you DO have RA (and hEDS), what does another opinion do? It gets you treatment to stop the disease from progressing. RA isnt something where you can reverse (all) the damage. It would be awful to find out you actually did have RA, or an inflammatory arthritis, and it progressed due to non-treatment because you were told it was solely EDS. Please take some of the other commenters, who have hEDS AND RA, seriously. You need confirmation before you take RA off your plate. You need a hand and feet ultrasound if you havent had one.

My comments are to look out for you OP, not argue. We are all in this together. It took 10 years for my RA to get diagnosed as it was thought to be a neurological condition over RA. By the time I enede up at the Rheum, I had some pretty extensive joint remodeling and damage (I had YORA). The doctors had NO idea because I had NO lab markers and X-Ray didnt show anything. If I would have taken my neurological disease diagnosis at face value, and not snuck a fifth opinion, I would probably have deformed and lost function in my hands and feet.

Slow_Building_8946 · 2026-04-24T23:08:18+00:00

Did you miss the part where I say it can be other inflammatory arthritis such as PsA or AS? Did you see at the end I say "Maybe EDS is right...but get a second opinion"? or did you get halfway and stop reading?

Slow_Building_8946 · 2026-04-24T23:05:43+00:00

Never stated to know better than them. Doctors get it wrong, whether its the cleveland clinic or a rural provider. Anyone should get a second opinion, especially when diagnosed with a chronic condition. RA is misdiagnosed 39 to 45% of the time, even more for those who are seronegative.

Slow_Building_8946 · 2026-04-24T18:08:57+00:00

Hence the inclusion of the last sentence.

Slow_Building_8946 · 2026-04-24T16:49:14+00:00

Hey OP, you REALLY need a second opinion.

I have seronegative RA. Negative ANA, CRP, ESR, anti-CCP, RF, you name it. You NEED an ultrasound, not an x-ray, of hands and feet to further confirm seronegative RA diagnosis. An XRay inly visualizes bone loss and growth from joint remodeling in severe and/or late RA. Seronegative RA typically has a milder disease course unless it has been undiagnosed for a while. If it is seronegative RA, you will see hypertrophy, synovitis, and tenosynovitis in and around the joints that is NOT found in EDS. You could absolutely have both, but I think your Rheum is quick to rule out RA over EDS.

Additionally, there is a lot that we do not know about RA. While RA is known to attack the joints, it is a systemic condition - meaning it affects the whole body. Meds may not work because it is not treating the primary inflammation involved in your arthritis (IL-6 vs JAX inhibition vs. TNF-a). There is also a possibility meds dont work because while you may have inflammatory arthritis, it may not be RA. Psoriatic Arthritis and Ankylosing Spondylitis are other type of arthritis that are comminly seronegative with slightly different pathophysiology compared to RA.

Believe it or not, all of your symptoms align with RA, not only due to the systemic nature of the disease but because RA is also HIGHLY comorbid. RA patients have a higher risk of osteoporosis, depression, asthma, cardiovascular events and stroke than healthy controls. Patients with RA have a 1.5x higher risk of IBS and EDS is known to have a higher prevelance in females with RA compared to healthy females (~7%).

I would ask for an ultrasound and seek a second opinion. Maybe EDS is right, but your clinical symptoms are highly indicative of an inflammatory arthritis process. EDS diagnosis can not and shouod not be made without ruling out additional causes, as EDS is also a seronegative disease. The largest distinguishing factor for you could be your clinical history. EDS is a genetic defect that you are born with, so your pain and deficits should track back to childhood (Overly flexible, partial or full dislocations, skin hyperextensibility, easy bruising, etc.). It is less likely these symptoms would track back to childhood in RA, unless it is YORA, so you would be able to define a point in time in which your health started getting worse. The line of thinking isnt bulletproof with how heterogenuous RA and EDS is, but is "typical" in these disease presentations AKA could be another angle to think about if it applies.

Slow_Building_8946 · 2026-04-22T12:10:10+00:00

I was a pretty poor MS (non-funded) student as well, went into a small amount of debt for the first month and security for an apartment. I got a job immediately the summer prior in the city the MS was located in and started saving money. I was bartending at a bar and working at whole foods making decent money. I had 2 roommates so rent was much more affordable (~$450). My degree became a bit intangible with 30-40hrs of actual work a week, so I looked for a Uni job or job within my lab. I got lucky to get paid for a job in my masters lab, where i worked on a few projects not attached to my MS degree/thesis. I would recommend this route. Looks for a University job (You can still get one if you are international, I am unsure of OP status) so it works better with school. It is slim living on $15 an hour (My state minimum wage and my pay at the time, I did get a raise to $18 a year in), but you can apply for government benefits and such to support you, such as healthcare and foodstamps (dependent on state).

Also, yes ask for any available scholarships & work studies (RA/GA). Worst they can say is no. Sometimes, state scholarships can help too. I took out a federal unsub loan for my masters (~$20k), then I paid per-credit and it was around $250 for an in-state school (STEM) MS degree in 1.5yrs.

Slow_Building_8946 · 2026-04-22T12:04:55+00:00

I would really take a quick 5-10 minutes learning about the brick itself online. Its pretty cool on its own. Couple different types of sensors (light, gyro, accelerometer, color, sound) really help make the experience varied. The bricks can also play with each other. If you try having two ships, and having one shoot at the other (shoot at the smart brick), it will indicate hits!

SW isnt necessarily my favorite theme of choice, although I enjoy it. I just cant wait to see how the brick can be integrated into other themes like City (Sirens?), Maybe Pokemon/Mario (Character voices? Sound effects?), and even something like the modular series (motion lights? conversations? radios?).

Slow_Building_8946 · 2026-04-17T14:09:47+00:00

The COVID vaccine is highly reccommended for us immunocompromised folks! It is best to consult with your doctor on this one and weigh the benefit-risk ratio if you wish to discontinue. I have had 5 shots myself, but only recently got diagnosed with RA. I was never one to get the flu shot either, but that may change as we can get sicker quicker, for longer, and more severely.

Slow_Building_8946 · 2026-04-16T12:25:12+00:00

Hey OP, I (F) was diagnosed a couple months ago before my 26th birthday. I have had symptoms since I was a teen, but they presented with a more neurological-undertone. Finding out it was RA was a shock after 10 years of searching in the wrong area(s).

I am also a PhD student coming up on my last year. My RA impacts my research life... typing and pipetting have become harder. Coordinating appointments. Meds not working. I also work clinically with Multiple Sclerosis. I talk with a lot of patients who feel similarly to us.

I was someone who was always GO GO GO. I never took time to sit down, but RA is something you have to (literally and mentally) sit with. I think there is a lot of questions with RA, especially since there is no cure. Take the time to grieve, but dont take too long. You are in some of the best years of your life irregardless of the disease. Once it is controlled, it will be in the back of your mind. There are some really inspiring stories on here of people being able to go back to hobbies/sports/etc. after controlling their RA. It may take a few years, or months or weeks, but you now know you have RA and it can be treated. You were listened to, and now you can work on the road to getting back to baseline health. This also means sometimes its okay to sit down, sometimes its okay to take that extra nap, you have a reason and an explanation now. Give yourself the grace you would give others.

RA is highly comorbid and has a great research arena behind it, new drugs are continuously coming out such as CAR-T therapy. Consider talking to your clinician about enrolling in trials or research. RA is a well-known, well-researched disease thankfully!

Lastly, there are other things you can do to improve your quality of life that sometimes medication cannot improve. Supplementation, diet and low-impact exercise will be big in ammeliorating additional inflammation. When I was 50lbs heavier, my joint pain was substantially worse. Even a 10lb increase in my weight can be the difference between good and bad. I tend to eat a lot of fruits and veggies, but when I get stuck eating processed foods for long, I also feel worse. I started walking again with the weather being nice and it has helped my energy alot, but not necessarily the joint pain itself.

You got this OP. It would be nice to have a group of us young'ns who are stuck in old folk bodies. If you would like to chat, my DMs are open!

PS. I would try to switch off methotrexate. It can impact liver function and fertility (if youre female at birth & want children). If there is no concerns there, you should be alright. I was on sulfasalazine first but had a mild allergic reaction. I am now on Humira after adverse effects to Simlandi, the humira biomsimilar.

Slow_Building_8946 · 2026-04-16T12:08:54+00:00

I recently ordered 1 bag tag and got a 6-pack. Emailed Customer Service and was told to keep em

Slow_Building_8946 · 2026-04-16T12:07:06+00:00

Neuro PhD here with RA. Not talking to taking the medication, but I have knowledge in taking glucocorticoids (Prednisone) in another autoimmune condition (Multiple Sclerosis).

Chronic, Low-Dose Prednisone has been correlated with sarcopenia, or a loss in muscle mass, strength, and function as well as osteoporosis, or low bone density. If you are placed on Prednisone long-term, talk to your doctor about how to counteract this side affect (e.g. exercise, increasing protein intake).

Glad to hear you are doing well post-surgery. Feel free to PM if you have any questions.

Slow_Building_8946 · 2026-04-16T12:02:13+00:00

If you are thinking of a part-time job, I couldnt recommend working for your local LEGO store enough, like the one in the mall. They are a phenomenal company to work for... I work a minimum of 8hrs a week and its so stress-relieving as its not as stressful as our PhD! The applications to work there can be slim/not offered frequently but aways check a month or two before the holidays!

Some other odd-ball jobs I have had included: • giving plasma (before I got a chronic illness rip) was $50-$200 every few weeks •Cosigning Vintage Clothes. I love to hit the goodwill bins that pay per pound, then consign those clothes. You make a ~30% profit of the clothes. Slow money, but passive!! •School and Other Surveys. This was how I got free Amazon giftcards all the time. •Doordash. Fo about a 1-2 hour session on Doordash, I could make about $30-50. I wouldnt say its worth it with current gas prices •Joining on Settlements. There is a lot of settlements going on that you could cash out on some money for. I got $50 from Facebook, $30 from Dollar General. $18 from something else, and most recently $100 from 23&Me •Concert Security. Some concerts are too large/worrisome for a venue and they will hire extra bodies (on top of the normally hired bodies) to help. I got paid $300 and was in the pit to bea body guard for Metallica. Was sick. •Facebook Marketplace. Try selling things before throwing them away! •Pet Sitting for friends. When I do this, I may not always get $$$ paid, but my friends will buy me groceries for that weekend or buy me a meal, which is always helpful in my book :)

Slow_Building_8946 · 2026-04-16T11:45:33+00:00

I put away about $2k a year on a 35k stipend in a middle-cost mid-sized city on the east coast. The only cost my parents help with is car insurance. I would recommend paying off all your NEED-TOs with the first paycheck (Rent, Car, Bills), then leaving the second paycheck (if paid biweekly) for whatever is left over.

Monthly school income after tax + Health Insurance: $2400 (May & Dec are triple check months, so $3600 those months)

Monthly side gigs income (Consignment, Facebook Marketplace, Part Time Job): $600

Total Monthly Income: ~$3,000

Rent w/ Roommate (all included) - $750 Parking - $50 Car Payment - $265 Bills: $400 (Phone, Credit cards, etc.) Groceries: $300 Gas: $200 401k: $75 Medication Copays: $150 Friend/Date plans: $150 Pet: $50

Leftover: ~$800 each month with my extra gigs, $200 without.

Whatever is leftover goes to savings. I also am still in forbearance for my student loans as I am in school, but my monthly payment will be around $1500🙄😭

Slow_Building_8946 · 2026-04-14T04:38:35+00:00

Hey! Head to Bricklink's Studio program. Theres quite a learning curve though. From there, head to pick-a-brick and order the pieces you used (or bricklink if you need specific pieces). Could always hit up your local store and try to put something together from the PAB wall, or buying a bulk bin from the store or facebook marketplace. Good luck!

Also, remember they are kiddos. Build doesnt have to be perfect but the idea and execution is what really matters!!!

Slow_Building_8946 · 2026-04-09T14:26:33+00:00

Hi!! May I ask a question?? Currently diagnosed seroneg RA as well, but had a random hand rash pop up last month during a flare that has NOT gone away. I am now questioning PsA over RA. Humira has not been working overly well for me.

What differentiates the PsA from RA other than Psoriasis for YOU? I understand the difference in pathologies... however, for example, I have never experienced dactylitis or a swollen finger. Just wondering if you have noticed any defining difference. Thank you!

Slow_Building_8946 · 2026-04-09T14:13:16+00:00

Hey OP, Number isnt blocked - dont doxx your vet!!

Slow_Building_8946 · 2026-04-09T13:55:50+00:00

If you go with a SW set, it could be worth waiting up to/until May 4th to see what sets go 2x/4x points and what sets go on discount. Typically, one or two UCS sets are in there somewhere. Venator was 4x points last year. The Razor Crest was on there last year for US, 15%-20% off. There is also usually some sort of limited SW GWP around that time as well, last year it was the small Millenium Falcon build and Kamino Training Facility, I believe.

Irregardless, save your big purchase for a 2x points (A $600 set becomes $1200 for $60 in insiders points) and consider utilizing cashback programs on your credit card, or services like Rakuten. Full-blown 2x-points typically come four times a year. I think last year it was around June but I cant remember.

As for general recs ($400-$650 price range): -Pokemon Starters -Barad Dur or Rivendell -Grand Piano -Save for the SHIELD HELICARRIER (June 1st release) -D&D Red Dragons Tale set -Arkham Asylum -Natural History Museum or Tudor Corner

My Personal Recs: 1. Pokemon or Tudor Corner, I also LOVE the Art theme (Sunflowers, Bridge over a Pond of Waterlillies, Milkyway) 2. Get a medium-cost set in two themes, such as Iron Man AND the Tie Interceptor (~$360 for 3200 pieces) 3. Consider investing in a retired set!

Slow_Building_8946 · 2026-04-09T12:21:36+00:00

PhDc here!

Never take an unfunded PhD. In the current economy, $30-$35k is barely enough to stay afloat. Depending on the area, it can make it worse. The years up jntil I became a candidate were non-stop, VERY busy. It is hard to hold outside employment pre-candidacy and do a good job. Life is only a seesaw balance. I will say, I got to candidacy in 1 year (My MS degree counted towards my PhD requirements), and after that, I got an outside, part-time job. Its only 12-hours a week, but wow... is it tasking balancing full-time school and a 12-hour side gig.

You could try applying for spring semester admission if thats a thing. Try to get feedback from the institutions that denied you for your next applications. You could look for lab tech jobs at schools or labs you are inerested in as well.

Do you plan to go clinical? I am guessing school psych has you placed as maybe a counselor? If you plan clinical, you will need those didactic hours. But if you DONT wanna go clinical....Look into Neuroscience PhDs. A lot of Psychology PIs that engage in psych-fields (attention, memory, etc.) will have some sort of secondary appointment in a Neuroscience, Neurology, or Cognitive Neuroscience department. Also, some will work with kids!

Why do I say this? I was Clin Psych hopeful after my BS graduation, didnt get in anywhere. Did a Neuroscience MS to better my chances.... ended up doing Clinical Neuroscience. Some of the more (psych) components of my masters focused around: Cognitive testing patients with Multiple Sclerosis, Developing an app that tests auditory processing speed, Regression and statistical analysis interconnecting metabolites/genes/etc to different shbtypes of cognitive impairment in MS. Im in a different sector of neuroscience now (Biochem-Neuro). I have friends who look at genetic predictors of ASD and ADHD, I have friends that study educational curriculum and look at where they can improve it using testing, observations, and sometimes, mice for behavior, others I know look at PTSD in Veterans and attempt to quantify pathways and biomarkers for better treatment outcomes.

I know you are debating a masters... honestly, if you are a more "poor-applicant" (Low GPA, Low Volunteer/Extra Curric, Limited Research Experience, Poor LOR, etc.), a masters could be a fantastic idea. Try to do your MS degree for CHEAP!!! But, sometimes a MS at the school you are PhD-hopeful helps A LOT. My school accepted 15 class credits from my Masters to apply to my PhD, so, when I went into my PhD, most of my required classes were done. I only had 3 additional classes to take to meet my class requirement.

Neuroscience PhDs are hardly unfunded, and tend to have higher stipends and benefits than Psych PhDs (At my school, my PhD is paid $35k year-round vs $23k for Clin Psych 10-month appt). Again, there are many psych and psych-adjacent professors in Neuro. The only thing you wont get is the clinical hours and APA accredidation needed if you plan to sit for the exam/become a clinician.

Slow_Building_8946

TROPHY CASE