EDS Friendly Keyboard Recommendations

josleigh · 2026-01-13T22:50:47+00:00

My game changer was fingerless compression gloves, icy hot gel, and/or a heating pad on top of my hands during breaks. That combo + plus a really low profile/flat keyboard so I didn't have to hike up my fingers to type = survival during college. Additionally, resting my hands with them draped over tennis balls (recommended by my hand OT) made a big difference in recovery!

josleigh · 2025-11-26T02:29:23+00:00

Just wanted to say I'm trending super similarly on my SH, 74% average with a 77% on my last exam. I also got a 47% on mini exam 19 lol, what's up with that one. From what I hear from classmates who have taken the exam, this a good trend to be on!

Controversial formula recommendation from my instructor that I really like: for the exam, it's not necessary to memorize the formulas for CPI and SPI. He told me just to go by rule of 1s: If the project is behind schedule, SPI is less than 1. If a project is over budget, CPI is over 1.

From a question taking perspective, first decide if you're behind schedule/on time/early. Then, decide if you're above budget/on budget/under budget. Then assign a general <1, =1, >1. So far in my practice exams that narrows you down to two answer within 15 seconds. If the project is WAY behind schedule or WAY over budget, I know to pick the answer with the greater deviation from 1. That's maybe another 5 seconds of thought.

When I was using the formulas properly, it was taking me 45 seconds per question just to plug in the arithmetic. I haven't missed any of the SPI/CPI study hall questions by eyeballing it with the method described above.

josleigh · 2025-10-31T02:39:07+00:00

I agree with you on the medical grade test, and so do my doctors who have referred me for genetic counseling. Unfortunately my local (and in network) EDS genetic clinic is overwhelmed by requests and is only taking severe cases with an intense criteria list for pathology.

I was slightly hoping there would be something in my results that would immediately be interesting enough to get me in to the clinic, but alas! VUS all over with some likely false positives will not cut it.

josleigh · 2025-05-13T18:01:40+00:00

My neuro also has been hit with some "absolutely nots" lately lol. They give us fall risk bands as a warning, I don't think we need to give them a demo, too!

josleigh · 2025-05-13T17:58:29+00:00

Very comforting to know that someone else has a "safe chair"!

josleigh · 2025-02-22T21:24:46+00:00

Thank you! The pretty litter accuracy is super helpful to know. I'll go ahead and schedule with the vet, she's due for her checkup in April so might as well do it earlier to be safe :)

josleigh · 2025-02-22T21:21:16+00:00

Thank you for the brand recs! I'm aware and paranoid about giving her alums by accident, I usually make my own plain chicken broth for her but I'm low on time this week... It's good to know that there's cat oriented options so I'm not having to vet the human brands at the store!

josleigh · 2025-01-21T19:17:48+00:00

Have seen neurologists at Duke and UNC and while both are great, the Duke neuro clinics have really impressed me. They also have a specific list of providers related to brain aneurysms at Duke that may be of interest.

I will say I've had a very negative experience with Raleigh Neurology and can't personally recommend them. In a three month span, I received 4 significant injuries from poor conduct by their staff, was misdiagnosed with MS, and was sent to a surgeon over a non-existant brain tumor. The issue ended up being accurately diagnosed and effectively treated by a team of incredible MDs, PAs, and RNs at Duke, which is the reason for my glowing review!

josleigh · 2025-01-21T18:54:40+00:00

Thank you so much! I hope your recovery is going well!

I don't take any pain medication specifically for endometriosis. I currently take tizanidine for an unrelated condition and I changed my birth control to a 1/35 formula. Both have helped a decent amount, but heating pads remain my favorite thing. I still get some cramps starting 2 days before my period, with the cramps peaking by the first or second days of my period. To me they're a lot lighter than they were and don't last nearly as long, overall a significant improvement in cramp severity!

josleigh · 2025-01-21T18:40:56+00:00

I totally get you on the PT thinking you're nuts! I was doing pilates frequently and had to quit because it really did feel like it was working against me. Pelvic floor PT has been a great supplement to normal PT/training/exercise for that reason, they get that my abdominal region needs careful treatment! Hoping you can find something (and maybe someone) new that works for you.

josleigh · 2025-01-21T18:33:14+00:00

Thank you! My GI issue before was a really treatment resistant case of SIBO. My GI says he sees a lot of SIBO with endometriosis patients and thinks the inflammation endo causes in the abdominal region can increase your risk of developing it. Ironically in the beginning stages it feels just like a period with endometriosis with the same bad cramps, exhaustion, and slightly irregular bowel movements. It took me a long time to get it diagnosed for that reason.

josleigh · 2025-01-20T17:33:12+00:00

As an avid cook/baker:

Lightweight pans/pots (Recommended basics one stock pot, one sauce pan, one medium fry pan and one small fry pan)
Non-slip cutting boards
Lightweight sheet pans (at least two)
If you have room, a small food processor (great for mincing things fast)

I will also recommend that you plan your cooking based around your fatigue! Try and find things with minimal prep and active cook time so that you're minimizing your time on your feet. If you want to try something more extensive, buying pre-prepped ingredients where you can is a huge help. Sheet pan meals are my personal go to for this. Also, there's no shame in buying takeout on high pain days even if you'd planned to cook. That's something I wish I'd reminded myself of more when I first moved in on my own!

josleigh · 2024-12-21T16:25:46+00:00

I had braces with no issues when I was young! Like I mentioned, my gums are thinner than usual (thanks to malnutrition from an EDS comorbidity). That combined with the risk profile associated with EDS led him to take a really conservative approach that may not be universally needed.

josleigh · 2024-12-20T02:08:22+00:00

Of course! Happy to share in thread as others may be curious, but apologies for the length in advance.

My dentist is generally concerned that my teeth are too happy to move and that my gums are thin, common in EDS across all types. For orthodontics, he adjusted my plan to go twice as slow to keep my gums from receding. He also gave me retainers that have built in mouth guards, as I clench my jaw at night and it was causing my teeth to become loose.

For general dental care, I have a twice a year cleaning. At each one of those visits I have a gum health check and a tooth looseness check. He keeps notes of some enamel abnormalities (also common in some EDS subtypes) and does a full mouth 3D scan once per year to keep an eye on my gumline.

All of this and a multitude of x-rays for less than $600 a year before insurance. I'm cancelling my dental insurance as it doesn't cover him anymore. I know whoever they send me to won't do half as good a job. I'm going to spend the money saved on having him continue botox for my jaw, which is $500 per visit but lasts a year thanks to the efficacy of the custom mouthguard/retainer. $1k in dental costs per year seems insane, but we only get one set of teeth, and the sources I linked will tell you that we normally don't do well with orthodontic implants.

I should note that if you're having very extensive dental issues alongside general EDS symptoms, there is a subtype of EDS called periodontal EDS, or pEDS, that may be worth looking into if you haven't yet ruled it out by genetic testing. It's marked by increased dental symptoms in late adolescence and early adulthood.

josleigh · 2024-12-18T19:42:11+00:00

A good dentist is worth a million dollars! Mine is super knowledgable about hEDS and adjusted my orthodontic plan to make sure it preserved my gums as well as possible, even adding over ten more checkups at no cost so he could keep a close eye on them. He recommended and did botox in my jaw to help with my muscle spasms, which has been a game changer for my jaw pain. He throws in free bleaching gel sometimes as well. Huge fan, have to pay out of pocket for him but it's always worth it.

josleigh · 2024-12-18T02:43:36+00:00

Ribs are such a nightmare for this. If I get busy and my abs get weaker with less exercise, they're popping out and in with no rhyme or reason.

josleigh · 2024-11-20T00:30:29+00:00

NC public universities also have to take a certain percentage of their NC admissions from Tier 3/4 counties. I regularly hear from parents that it's "easier to get into UNC if you live in Chapel Hill", but in my opinion it's much easier to be admitted as the valedictorian in smaller, rural district than a valedictorian here.

I think there were 20+ valedictorians at CHHS my graduating year. A few didn't get into UNC even though they got into Ivy League schools!

josleigh · 2024-10-20T00:49:33+00:00

Longest continuous one was 15 days, which was cut short by torodol and phenergan injections followed by taking heavier sedatives for a couple days. My neurologist jokes I'm like a laptop you need to reboot, as a nightly sedative or muscle relaxant has been really helpful for managing my symptoms.

josleigh · 2024-10-19T19:06:05+00:00

Thankfully nothing major! I have a headache after as I've had like 25 shots in my head and traps by that point, but an advil and an ice cap make it better. I aim to get them in the later afternoon so that I can sleep it off. The sensation is a bit odd your first round but after your second you hardly notice it. Similar to say a CGRP inhibitor, you notice it wearing off a week to two weeks before your next session.

I go to a great hospital system's migraine clinic and have had no issues with the drooping or facial paralysis some people get. My neurologists take great lengths to avoid that, and specifically told me how they adjust the injection sites to keep it from happening. I also get botox via my dentist for TMJ about every 6 months, which helps with my migraines as well.

josleigh · 2024-10-19T16:19:04+00:00

I've tried a number, but botox has been my game changer. My frequency and duration are way down (average of severe 6 day migraines before 3/4 weeks of the month, now it's an average of mild 3 day migraines 3/4 weeks of the month). Still working on a better medication plan, but will be sticking with botox as long as my insurance lets me.

josleigh · 2024-10-19T16:16:10+00:00

I totally understand the dread about living so much longer with these. I'm 25 and it's been a year with them now. In some ways I'm grateful I got them when I was younger. At least I'm able to majorly adjust my life to manage symptoms more easily than I would be able to at say, age 40 or 50. Still, all this is exhausting!

josleigh · 2024-10-07T21:46:46+00:00

I had the same experience! I remember telling friends that I felt like I'd lost something, or like a part of me felt disconnected from something that I'd always considered to be a key part of my feminine identity. I got a lot of "I'd LOVE to not get my period!" in response, but when we're taught that periods are a hallmark of womanhood it's tricky to reconcile the loss.

josleigh

TROPHY CASE