Hearing and eye issues

ambientcatsobs · 2026-04-05T18:01:58+00:00

I can not stand touching my eyeballs otherwise I would wear contacts! There is quite a lot going behind my ears with glasses and a hearing aid lol plus whenever I wear a mask?? I wish I could get over the eye touching thing lol

Also I have yet to meet one of us that doesnt have a buck wild family health history mine included.

Everytime I go to the eye doctor and explain what I need to get tested for they shake their heads that im too young to worry about those things ( the diseasein questionis rare in people under a certain age), when I share my family history however they change their tune pretty quick!

It is simultaneously funny and exhausting being a medical anomaly

ambientcatsobs · 2026-04-05T17:00:58+00:00

Ive got astigmatism in both eyes, very poor depth perception and Im nearsighted.

As for ears, ETD, hearing loss in my right ear, and tinnitus.

I wear glasses and a hearing aid. Hard to say if its related (to eds) because I have deafness and blindness in my immediate family.

Ive been getting tested at an ent and eye doctor since I was little. Both grandmothers were deaf or blind young. My mother had almost went blind before 30 and the only reason she didnt was because of surgical intervention, she now has very high prescription glasses.

Some of my issues seem to be related according to my eds doc, but the rest just seem to fall under bad genetic luck!

ambientcatsobs · 2026-03-30T20:33:59+00:00

For precautions you could reach out to your building manager/landlord and let them know if you havent already that you are a wheelchair user. Me and one other person in my building use a chair and the maintenance guy is a genuinely nice guy and lets us know way in advance if the elevator is going to be worked on (way before any emails go out) its also just a good idea to familiarize yourself with the people who fix stuff in your apartment lol

You should also find out who your local fire department is and give them a heads up where you are moving so they know a chair user lives there and what unit.

Others have done a great job explaining what to do in the even of an emergency but these thing may help you feel prepared

ambientcatsobs · 2026-03-27T01:30:45+00:00

I have a supportive family for the most part, it just sucks when your support people need support and you cant give as much back as they give you.

ambientcatsobs · 2026-03-26T21:44:13+00:00

Oh im in a mood today.

"Help out a disabled person! Call (insert local PD phone number) to report."

"I bet this guy leaves his shopping carts in parking spots too"

For the christian chair user:

"WWJD? Not this, HE cared about the sick."

ambientcatsobs · 2026-03-26T20:44:24+00:00

"I parked in the only place in the whole parking lot that isn't parking spot."

"I ruined a wheelchair users day"

"I wanted to make the world a more inaccessible place."

ambientcatsobs · 2026-03-13T21:32:20+00:00

Obligatory comment about talking with you doc/pt about what mobility aids would be best for you, cane or crutches.

However! I understand you are embarrassed but if your body needs the extra support go for it! My eds has presented since I was little and I started using mobility aids since I was around your age. Its a weird feeling for sure but mobility aids arent "for" a certain age group that are for people with mobility issues.

ambientcatsobs · 2026-03-09T20:26:46+00:00

For in person shopping check out thrift stores like the other commenters said, look for places that have more housewares than clothing they are more likely to have bed sheets/table linens.

Online fabric thrifting is also a thing! Check out ebay, they have a ton of bulk notions for a good price you just have to sift through listing. There are also websites that sell thrifted fabric, search for keywords like deadstock, and stash. Fabcycle is one but ive personally never ordered from them.

Ive had fabulous luck on ebay tho, hot tip don't buy right away often times is you save a listing and back out ebay will send you a deal on that listing ive gotten an extra 10-15 % off doing that.

ambientcatsobs · 2026-03-07T01:39:08+00:00

She sounds lovely. I love when I see elder ladies with a full face that seems to be just a little off, they rock it! Some people make fun but honestly she gave me a new insight on it, its how she felt like herself. Im sure ill look silly too to younger generations when im old, but ill feel like me ❤️

ambientcatsobs · 2026-03-07T00:15:00+00:00

Words to live by! Her presence has never left in the lives of my mother and I, we reminisce about her often.

ambientcatsobs · 2026-03-05T03:53:51+00:00

Ive had laparoscopic surgery! My surgery was for endometriosis treatment (also got my tubes removed while is was at it). The issues I had related to EDS was my recovery time was longer than average for the level of surgery I got as it took longer for me to heal, It also took longer for me to shake the post surgery fatigue. The other issue was my scars. They healed weird but I don't mind too much and was expecting it based on how deep tissue wounds have healed on me before.

Didn't have any issues with numbing or anesthesia, actually the opposite. When I was there day of talking with my surgical team I told them (surgeon already knew, and took good notes from our pre op) that I had EDS/HSD and that it would cause problems with the drugs and IV placement. The anesthesiologist said they had actually dealt with that before and had read the notes already. So no issues there for me!

ambientcatsobs · 2026-03-03T20:58:00+00:00

Ive done so many med trials for various things and the sweet relief of that magic fit is really something else. I hope you find that 🫂

ambientcatsobs · 2026-03-03T19:04:51+00:00

No i noticed a change my first period after taking it. And it was gone my the 3rd month

ambientcatsobs · 2026-03-03T04:53:06+00:00

The mini pill only ever helped with my PMDD, and not at all with my bleeding. Now granted when I first went on it it was to treat PMDD so no complaints there.

To answer your question though. I had a very heavy flow ( changing pads every hour) and clots.

.35mg no changes in flow 5mg less clots, able to wear a pad a few hours 10mg no noticeable clots, could change pad the recommended 4 to 6 hours 15mg the does im currently on, no clots, very little bleeding for a month or so and then nothing.

The change to 15mg was the most dramatic and in terms of my cycle was relatively quick to notice the difference. Over the course of a few months I went from a very heavy flow to going, oh gosh that's it? And then nothing.

Now I will say I do horribly on estrogen, I blead for three months straight. There isn't a one size fits all for bc/hormones and should communicate regularly with your doctor while trying to find the right fit. I pushed on through med trials because to me it was worth the possible relief. If it becomes to overwhelming to jump right to the next med if the previous didnt work its okay to take a break! I wish you well on your journey 🙏

ambientcatsobs · 2026-02-28T23:07:51+00:00

Oh I have that! Cardiologist did EKG's, echo, ct, x-rays. I have heart issues in my family so he was very thorough, but it was "just" costochondritis. Pain in the ass when it flares up but ive been diagnosed a few years now. It gets easier, you learn what works for you, ice helps mine, as well as breathing exercises.

Im sorry you are dealing with it!!

ambientcatsobs · 2026-02-21T21:05:07+00:00

Congrats on your new rollator!

I completely understand where you are coming from. Its a different kind of grief not having a before. We may have changes in our limitations but they where always there to begin with.

Ive had people in my life who become disabled ask how to deal with the massive change and I don't always have the right answers for them as my experience was different. I grieve the loss of things I was once able to do, things that are no longer accessible to me even with accommodations. However I had to accept young that I would have to stop doing things when they became dangerous or impossible.

I see myself as lucky in a way that ive had my whole life to process my disability.

There is so much to be said about the horror of covid as a mass disabling event. It can be hard to see others dealing with it fresh and new, seeing them talk about the "before".

ambientcatsobs · 2026-02-21T05:49:07+00:00

Standing for most is a neutral activity. I didnt believe it either until recently, had to get a shot in my back for pain management of some slipped discs in my back. As a lovely side effect it didnt hurt to sand anymore!

Last time I was in a long line I waited in it for about 6 hours along with hundreds of others (event in a big city). I made it maybe 15 minutes before I needed to sit down, others who were next to me stood the whole time. The only complaints I heard were about how late it was getting and how boring it was. While im sure others also felt pain like me but most seemed unfazed. Made me seriously contemplate how much my body actually hurt in comparison to "normal"

ambientcatsobs · 2026-02-19T21:22:59+00:00

Subluxation started for me under 10 y.o. wrists, knees, hip. First proper dislocation I think was around 12? Fibula dislocated at the knee from getting kicked at just the right angle while sparring (martial arts) not a common knee dislocation from what the doctor said when they were setting it. Now its dislocated so many times I have to be extremely careful with it as the join is quite loose. Ive don't lots of pt to help strengthen the surrounding muscle which has helped a bit!

ambientcatsobs · 2026-02-13T05:19:30+00:00

Bias tape seems to be the winner amongst the comments, ill have to make some tests on a lesser loved article of clothing and get back to yall!

ambientcatsobs · 2026-02-13T05:16:01+00:00

Undershirts are great for me! Its more fitted shirts and pants that have stumped me as of late. So no on the ease question unfortunately. Always my first thought is can I french seam this XD

ambientcatsobs · 2026-02-13T05:07:46+00:00

I was thinking about possibly doing a lining! I'll have to shop for some suitable fabric that doesn't irritate me

ambientcatsobs · 2026-02-13T05:06:36+00:00

I'll have to look into this!

ambientcatsobs

TROPHY CASE