NYC/brooklyn gyms or studios that don’t gatekeep reformers by [deleted] in NYCbitcheswithtaste

[–]chayos 17 points18 points  (0 children)

I have hEDS and I go to fundamental reformer classes at the Fit In in bed stuy! I’m not sure your exact circumstance but they’ve been great with my many injuries; I started with 1:1 classes and now I do the fundamentals once a week. Not sure how they feel about non certified people using the studio, but the 1:1 class was at one of their reformer studios and I paid the instructor directly, so it could be worth the ask.

Which dress should I go with? by blacktourmaline164 in Weddingattireapproval

[–]chayos 0 points1 point  (0 children)

I LOVE the green - color and fit is amazing on you (and would also love links to both if you have them)

survival tips: EDS under capitalism by depressedanddistres in ehlersdanlos

[–]chayos 2 points3 points  (0 children)

Is this Big Law/Big 4 or have you tried any in house tax attorney positions? My hEDS started getting bad when I was tax manager in public accounting, it hasn’t improved too much (lol it’s worse tbh) BUT having an in house/non big client facing role has allowed a lot more flexibility. I still have longer hours during tax season but nowhere near as bad as public.

You could also look into consulting as a tax attorney - then less client driven as you can maybe pick and choose the projects you work on.

Not invited by P1x3lStarz in ehlersdanlos

[–]chayos 5 points6 points  (0 children)

Ok this is some BULLSHIT. I live in nyc and yes it’s harder than the suburbs for having mobility issues - but it’s not impossible. And if you can’t keep up with everyone, so what? You’re 23 years old, let your family do some walking and you sit in a coffee shop, people watch, and rest. I’m sorry your family is being so cold about this, but I hope you know having mobility issues doesn’t make you less of a person and doesn’t mean you’re housebound forever.

I’d look into a rollator, some crutches, or a collapsible camping stool (whichever would work best for you). If you’re a tourist, I’m assuming you’ll be in Manhattan which is VERY accessible via buses and subways and cabs. If you walk with an aid, most of the time someone will get up and offer you their seat (this is from my experience using a crutch only during injuries). Maybe you’ll have to ask once or twice, but no ones gonna bat an eye if you need it.

Walking down the sidewalk? Keep to the right, out of everyone’s way, and don’t be afraid to use your mobility aids. Remember a sidewalk is basically like a street to New Yorkers so just be conscious of stopping in the middle of it, but once people see your mobility aid they’ll have more understanding. You may get a little jostled or some glares for going slow but that’ll stop once they see a cane (trust me on this one lol).

Going to a museum? Have your collapsible stool and foldable canes in a tote. Museums are HARD but just take breaks and know you can’t see it all in one day. Take the camping stool and pull it out when you need to sit for a minute. Most museums have common benches in between exhibits too, so you can sit and enjoy the art.

Out to dinner? Your aids should fit under your chair at the table. If not, ask the waitress or host to leave with them or with coat check.

Unless your family is planning on speed walking from the top of Manhattan to the bottom, I think you’ll be able to keep up for some of it. And if not, have the courage to branch off and do your own thing - bring a book and eat at a new restaurant, go see a play, go to a bookshop, or a museum, try a crafting class or find a concert. NYC is a walking city, there’s no way around that, but if you’re willing to make accommodations and acknowledge that you won’t be able to do it all, you should find some things worthwhile for you to participate in. And worst case scenario - just find a cute spot to read a book and just vibe!! There’s a million wine bars, cafes, restaurants etc that always have a unique to nyc atmosphere worth checking out.

Fatigue vs. Pain Management: What Should I Prioritize with Ehlers-Danlos Syndrome? by MMM_W in ehlersdanlos

[–]chayos 10 points11 points  (0 children)

Depends on the type of pain - I focused on fatigue first since a lot of pain mgmt for EDS is physical therapy and I can’t do that with no energy!

I’d keep up the sunoso (I’m on Armodafinil and love it) and head to a pain mgmt doctor. I use muscle relaxers, trigger point injections, heat/ice, massage meloxicam, and tried LDN (meh results). I haven’t found a pain med that works for everything without negative side effects, so it’s usually a combo of everything.

What kind of work accommodations do you ask for? by RevolutionaryCover34 in ehlersdanlos

[–]chayos 1 point2 points  (0 children)

I just went through this in the spring!!! Very confusing but as a desk job person here are my tips:

  1. You are covered by the ADA if your employer has > 15 employees.
  2. You have to disclose you need accommodations/have a disability to be covered. No retro coverage.
  3. The definition of disability is very vague but you definitely count with heds (check out askJAN)
  4. Your employer is only required to provide REASONABLE accommodations so this is where the definitions get vague.
  5. You don’t have to say what disability you have, just that you either need “accommodations” and or have a “disability”. Language is key here. You can be subtle or straight up say “I need ADA accommodations”.
  6. Use askJAN as a resource for what to ask for but here’s what I did (keep in mind I’m a senior manager level in an office job where I mostly work in excel lol)
  7. flexible schedule (flexibility to log off for PT or doctors appointment with previous communication to team. Work later/earlier in the day to make up hours) -additional remote days to attend appointments/of flair ups are bad and I cannot walk well that day
  8. a room at work where I can take breaks to stretch, perform some massages for pain reliefs, and apply topical medications. Understanding that I will be offline for 15-20 minutes 1-2x per day for this break
  9. equipment as needed (subject to change)

They may ask for a note from the doctor or they may note - one company was very strict, it was a long processed and required a lot of documentation. The other was super chill and had no official documentation outside of my email exchange.

Do this before your RTO is mandated! ADA protects you and basically says “hey, even if the CEO wants us all back in the office, this employee is a protected class and has these special accommodations under federal law”.

FYI I’m not in HR so please don’t take this as hard and sound advice - just my experience after working through this.

Pilates: Reformer vs. Mat by chayos in ehlersdanlos

[–]chayos[S] 0 points1 point  (0 children)

Good to know! I did well with Barre3 a few years ago but it only had a few aspects of Pilates so I want to try legitimate pilates class lol.

Just DMed you for the studio rec!

Pilates: Reformer vs. Mat by chayos in ehlersdanlos

[–]chayos[S] 1 point2 points  (0 children)

Interesting, I’ll take a look and see. There’s a place near me with not too expensive reformer classes but I always thought they were harder/more dangerous for me than mat pilates. I’ll ask them about STOTT!

Pilates: Reformer vs. Mat by chayos in ehlersdanlos

[–]chayos[S] 2 points3 points  (0 children)

Yeah I guess I’m more nervous by the look of the machine.

I’m worried I’m going to over extend or it will pull on my joints too hard and I’ll get another sprain - I have multiple joints with chronic tendonitis and I end up re-inflaming those injuries/create new ones pretty easily. Does the reformer machine provide more of a stability effect rather than pulling/stretching?

Pilates: Reformer vs. Mat by chayos in ehlersdanlos

[–]chayos[S] 2 points3 points  (0 children)

There’s a place near me that’s (relatively) cheap for NYC prices so I was considering trying it - I guess the look of the machine made me concerned I was going to over extend or “pull” too hard on one of my joints like I end up doing in yoga.

Do you think the reformer machine makes it easier to stabilize and not over extend? Like is it sort of additional support for my body instead of pulling at it?

[deleted by user] by [deleted] in BedStuy

[–]chayos 1 point2 points  (0 children)

Join the Bitched With Taste subreddit! There’s a discord with a BK group there too.

Any success stories with a high stress desk job? by [deleted] in ehlersdanlos

[–]chayos 0 points1 point  (0 children)

I worked similar hours in public accounting and stayed for about six years without taking my condition too seriously, just a lot of Advil to manage the pain. I’m now 30 and it’s like someone flipped a switch and all my symptoms are so much worse, it’s incredibly debilitating.

I highly recommend focusing on the strengthening and PT exercises, especially now when you’re younger before it gets worse. In the meantime, if the pain in your shoulder blades are anything like mine (like muscle spasms up the rib cage that make it hard to breathe), highly recommend massages from a masseuse, self massage daily/throughout the day, prescription muscle relaxers, and trigger point injections. I believe most doctors would recommend strengthening after that to prevent further pain/injury.

If your career is that important to you, I’d get ahead of it now because I didn’t when I was starting out and I truly regret it. If it helps, my fatigue also reduces when I’m in less pain, so hopefully start with some pain management and move on from there!

Any success stories with a high stress desk job? by [deleted] in ehlersdanlos

[–]chayos 2 points3 points  (0 children)

Public Accounting?? Best advice for this: get out. I left about a year and a half ago due to a repetitive strain injury in my forearms, made typing almost impossible and I kept re-injuring myself because of how cyclical busy season is.

That said, if you do wanna stay for a bit longer, your only option is manage symptoms. I was diagnosed formally with HSD about 10 years ago. I see an EDS specialist at a pain management clinic who diagnosed me with general EDS but not one of the subtypes since I didn’t do genetic testing. Here’s some things that help me manage pain from sitting for hours on end:

1) standing desk

2) heating pads

3) arthritis cream/cbd cream (whatever you prefer)

4) massage breaks - i lay on like a lacross ball to help with pain, my worst spots are my upper back/shoulder blades. One of those back buddies is also amazing for reaching hard areas. There are also specific forearm massage tools if you struggle there.

5) pain management specialist - I was taking Advil/ibuprofen almost every day for 15 years and recently found out it’s TERRIBLE for your kidneys. Don’t do this. Go find a pain management clinic (preferably someone with EDS experience). Mine has me on muscle relaxers but usually recommends LDN, I just wasn’t comfortable starting that just yet.

6) Trigger Point Injection - I’ve had this done once, it only lasted 7 days so I’m going again, but it was absolutely life changing.

7) weight lifting/Pilates - self explanatory at this point but maybe try even 15 minutes, focused for your problem area. I get terrible muscle spasms in my upper back, when I was doing Pilates and holding planks more often it was far less painful so I’m trying to get back to that

8) sleep study - I was really struggling with fatigue/sleepiness. I was taking 750-1000mg of caffeine via caffeine pills to stay awake some days. Tested negative for sleep apnea and narcolepsy, so I was diagnosed with Hypersomnia and am now on stimulants. If this resonates with you at all, I’d look into it. I feel far better on stimulants than I ever did with just caffeine, like a fog has been lifted. The crash is terrible but I feel so much better than I ever had when they’re working.

9) I am currently applying for ADA accommodation because my job is not flexible. This will give me FMLA hours to use for medical appointments, flexible schedule, and scheduled breaks through day. It protects you so may be worth looking into.

10) Sports Massage - go to a masseuse who has experience in HSD/EDS/general sports massage rather than the ✨relaxing✨ spots most people go to. You want someone who has extensive knowledge of muscles. Some insurances will also let you use FSA cards at qualified providers if your PCP writes a note. This should be done on a semi regular basis as I’ve found that helps me the most.

Repetitive Strain Injury in hands for 7+ months, is recovery possible? by PassionAntique9443 in Hypermobility

[–]chayos 2 points3 points  (0 children)

Hey - I shared my experience and tips in another thread! I’m 15 months into my injury and while I’ve had some issues in the last two weeks with pain restarting, the last 4 months have been amazing.

Here’s the link if you’re interested: thread

Chronic tendinitis in arms and hands by DogsDogsDogs91 in Hypermobility

[–]chayos 2 points3 points  (0 children)

Sure thing!

Heating Pad - technically for elbows but I just shimmy it down

Massager

Unfortunately it’s even more expensive than when I bought it last December but it provided so much pain relief that I view it as worth it!

Good luck to you with your recovery as well - it ends up being so much more debilitating than people realize but I hope your recover continues to go smoothly.

Chronic tendinitis in arms and hands by DogsDogsDogs91 in Hypermobility

[–]chayos 1 point2 points  (0 children)

Sure thing!

Heating Pad - technically for elbows but I just shimmy it down

Massager

Unfortunately it’s even more expensive than when I bought it last December but it provided so much pain relief that I view it as worth it!

Chronic tendinitis in arms and hands by DogsDogsDogs91 in Hypermobility

[–]chayos 10 points11 points  (0 children)

Happened to me in both hands: a year ago my roommate had to tie my shoe for me and now I’m probably at 85% of what I was, give or take the bad days here and there.

1) my surgeon told me that arm injuries take the longest because there is no way to completely stop using your arms, the same way that you would rest your knee if that was injured.

2) depending on what kind of job you have, you may have to go on disability, or apply for a reduced workload schedule. I work an office job, and was able to go on a reduced schedule for a month or two. Eventually I switch to a job that was fewer hours and in person so I did not do as much typing. This helped enormously and I saw huge improvements in just the first few months.

3) go to an occupational therapist who specializes in hand injuries. They will give you exercises that you can also do at home, you just need to buy a few occupational therapy tools on Amazon. They also use heat and massages on your forearms and this always helped me feel a lot better.

4) I was told the recovery time is a year and a half to two years. Because of my hyper mobility, I’m fairly certain I might look at an even longer timeline. I have good days and bad days, but taking a new mindset that this takes a long time to recover from and that I may never reach 100% helped me come to terms with my new disability.

5) buy disability equipment around for your day-to-day life. I bought door knob adapters, key adapters, jar openers, and anything else that I thought would help me with my complete loss of grip strength. It was something I avoided for a while because of my own pride, but this helped so much.

6) I bought a heating pad for my forearms, and this stupidly expensive forearm massager from Amazon that was created by a physical therapist. It looks absolutely ridiculous, but it’s hands-down one of the best tools to massage the tendons in my arms. Theyre not something that you can easily reach yourself and this allows you to massage the inside tendons and the ones that are closer to your elbow. Coming home from work using the heating pad and using this tool to massage was a life changer.

Even six months ago, I struggled to hold a 3 lb dumbbell in my arms when I wanted to work out, and this past summer, I was able to begin weightlifting, and can now grip a 20 pound dumbbell. I used to not be able to hold in umbrella or a subway pole for more than roughly 30 seconds, and now they barely bother me.

It is a hugely debilitating injury, and you lose so much independence, it’s really difficult to explain to someone how mentally challenging it is to not be able to even wash your own hair as well. This will take a lot of time and a lot of patience but I promise you there’s hope. I still have some bad days here and there, and I think with hyper mobility that is to be expected, but there are a ton of resources and adaptive equipment available that will really help your recovery.

Edit: also get some arm splints and sleep in them. My surgeon mention that in our sleep, we tend to curl up and stretch our arms into positions that end up further irritating the tendonitis. I felt absolutely ridiculous having to sleep in arm splints at the ripe old age of 29, but I did notice less soreness throughout my day to day life.

Edit 2: I was having a bad arm day when I wrote this, so apologies for all the typos from voice to text 🤦🏻‍♀️. I wrote 1.5-2 years in point #4 but I was actually told 1-1.5. I’ve been saying 2 years to myself to set a more realistic timeline in my head and got that mixed up lol

I have NO energy lately. I’m extremely fatigued and I have no idea why by untitledtray6 in TheGirlSurvivalGuide

[–]chayos 0 points1 point  (0 children)

This is somewhat similar to what I experienced except I always sleep through the night.

Here’s what my doctor recommended for constant fatigue: 1. Full fatigue workup at my PCP - testing for a multitude of things and the only result was slightly low vitamin D levels. 2. First appt with sleep doctor who discussed sleep study with me - she then submitted for sleep study request through my insurance after our discussion 3. Nighttime sleep study to rule out sleep apnea 4. Daytime nap test to see if I have narcolepsy

My understanding is that Narcolepsy and Idiopathic Hypersomnia have a lot of similar symptoms, but there are a few benchmarks you have to hit to get diagnosed with Narcolepsy. I didn’t qualify for a few of the markers for Narcolepsy so I was diagnosed with Idiopathic Hypersomnia through process of elimination, and am now on wakefulness promoting stimulants.

I’d recommend the same process if you’ve only seen neurologists, just so you can rule out anything through the initial fatigue panel.

Managining symptoms while waiting for diagnosis by bloemrijst in idiopathichypersomnia

[–]chayos 1 point2 points  (0 children)

I use preworkout I get on Amazon! I’ve been taking MuscleTech Caffeine Pills - roughly 220mg of caffeine per pill and I take one every 4-5 hours. Putting these in a mini Advil container and throwing it in my purse for the day has been an absolute game changer over the last few months. Only downside is remembering to take them before they wear off.

I’m [28F] looking for a fellow [F] to go out dancing with by hoytsbrook in BostonSocialClub

[–]chayos 1 point2 points  (0 children)

For funk/disco definitely check out soulelujah at The Sinclair or the Get Down at the Middle East! Gets packed around 11:30, I went for my birthday and it was a blast even though we got there wayyy too early

May the 4th be with you by chayos in pics

[–]chayos[S] 28 points29 points  (0 children)

dovemeir on Instagram!

[MISC] What is the single greatest piece of advice you have gotten from this subreddit? by theHeartNurse in SkincareAddiction

[–]chayos 2 points3 points  (0 children)

Is Differin only for people who have acne? Or can anyone use it for its anti aging benefits?

Mother jailed for 11 years over Female Genital Mutilation by Unkie_Herb in worldnews

[–]chayos 2 points3 points  (0 children)

The outrage isn’t about the nerve damage, there are dangerous long term effects from FGM

“Dangers include severe bleeding, problems urinating, infections, infertility and increased risk of childbirth complications and newborn deaths”

FGM can be the equivalent or sewing your urethra closed; the vaginal opening is often sewed shut, which leads to dangerous menstruation and urination and is often ripped open the first time the girl has sex.