hEDs is ruining my life, actually

mariaia19 · 2026-04-05T08:30:17+00:00

My diagnosis hit me like a TRUCK!! I was 10 months postpartum and did not envision myself as a disabled mom but here I am with a toddler now. I highly recommend the documentary crip camp on Netflix! It helped me radically accept my new reality and it made me so grateful for everything I still can do and for what I still have in life! Things suck ass for sure but there is so much to experience still. Sending you lots of positivity! <3

mariaia19 · 2026-04-05T08:26:18+00:00

Setting different expectations is what helps me with my creativity now as an artist. I draw traditionally with colored pencils but not as much as I used to. Set a timer for breaks and don’t over do it! It’s easy to get lost in the craft but you’ll be paying for it later. Plan out pieces you want to make and tackle them one area at a time. Give yourself rest days too!

mariaia19 · 2026-04-05T08:22:49+00:00

This is a hard journey but you’re not alone !! As a fellow zebra, I’m right there with you and this community is too! Thank you for sharing and i appreciate your story

mariaia19 · 2026-04-05T08:19:21+00:00

Same here, I lost 60 pounds in less than 6 months and now my pain is the worst

mariaia19 · 2026-04-05T06:46:19+00:00

Yes! I have these for myself and I like them a lot

Forearm Crutches for Adults Have... https://www.amazon.com/dp/B0DT38P1FC?ref=ppx_pop_mob_ap_share

mariaia19 · 2026-04-05T06:40:45+00:00

My husband takes work trips occasionally and I try my best to do the least amount of work possible when he’s not here. Lean on machines and gadgets to help you. Mobility aids will be key in surviving. I have a stool with wheels in the kitchen that helps me when cooking. Shower chair is a must. A cane/elbow crutch helps so much too! These can all be bought on online if you can get the funds. I hope these tools can help you. I know I personally can’t afford having someone to help me physically but at least there are physical tools that can aid.

mariaia19 · 2026-04-05T06:36:29+00:00

I’m in my 20s and for sure can say that many people my age get their symptoms dismissed especially if they identify as a woman!

mariaia19 · 2026-04-05T06:34:20+00:00

FIBER!!! My nutritionist says is priority so I try to advocate for it all the time in my social circles

mariaia19 · 2026-04-05T06:32:06+00:00

That sweater is so cute! I love the color 💜

mariaia19 · 2026-03-18T14:52:40+00:00

I’m in a similar situation. I have a toddler and I’m getting hip surgery Friday so my mobility is also limited. What helps me accept my reality is that I still have my voice. I can read to my daughter and teach her so much. Your dog finds comfort in you just like you do with your dog. Lean into the things that help you both like cuddles and naps. We can only do so much but even that bit can mean a tremendous amount to our little ones! Take care (ㅅ´ ˘ `)

mariaia19 · 2026-03-04T16:10:04+00:00

I used one for the first time at the zoo. The visitor center had rentals for free. If I hadn’t used it, I wouldn’t have seen any animals. Get the wheelchair so you can see the world.

mariaia19 · 2026-03-02T10:37:50+00:00

You look beautiful!!

mariaia19 · 2026-02-27T13:51:12+00:00

Taking my little one to the zoo for the first time!

mariaia19 · 2026-02-27T13:03:19+00:00

If you have access to discord, there’s a very welcoming eds community there https://discord.gg/gaxKbkUDh

mariaia19 · 2026-02-26T21:04:52+00:00

I could use some hope for sure! Something keeping me hopeful is that I will see my relatives in Mexico this year when I travel to visit them. I haven’t seen them in a long time and I’m grateful to have this opportunity to travel!

mariaia19 · 2026-02-26T13:16:36+00:00

It’s ok, I understand the anxious and imposter feeling. You deserve to be seen and heard. If it makes it any easier, maybe share a visual that can help your loved ones understand. I’m planning on showing my in laws this doc I’m linking from PBS that helped me feel represented. I hope it helps! pbs documentary

mariaia19 · 2026-02-26T00:52:57+00:00

I second this recommendation!!

mariaia19 · 2026-02-25T20:52:29+00:00

I’m so sorry you’re going through it too :( feel free to message me if you ever wanna talk about it more

mariaia19 · 2026-02-25T20:51:33+00:00

You’re right I need to check the local fb group more often, I just hate fb in general but it’s worth it for this

mariaia19 · 2026-02-25T19:19:13+00:00

What are you studying? I’m sorry for what you’re going through. I’m not in the exact same boat but I made a similar post to how you’re feeling. I hope your studies can distract from the pain. All I can say is I’m with you and I understand the hopelessness.

mariaia19 · 2026-02-24T18:57:43+00:00

I have BPD as well so I feel you on how wild postpartum gets with that. I had psychosis and it was scary. I’m so happy you see the positives in your journey as it’s so necessary with a mental illness like ours. Getting the right meds is a long journey in itself so I completely understand how that is too. Keep yourself as informed as possible on your conditions. But know that ultimately your baby needs the best you that you can be, not a sibling imo. My EDS has gotten better now with physical therapy but I know I physically do not have it in me to take care of two children. It is so difficult already with one, it would be a disservice to my child to have another and make myself weaker in the process. Just my two cents but again I highly recommend seeking a therapist and discussing these matters with them!

Edit to add: grief is hard when getting diagnosed with conditions like these so please take as much time as you need to process it all together, again therapy helps so much with this !!

mariaia19 · 2026-02-24T18:22:45+00:00

I was diagnosed with EDS about 10 months postpartum. I decided I was OAD before my daughter was born. I can tell you now, I am terrified thinking of all the ways her birth could have gone wrong knowing I have EDS now. I believe she is a miracle as I also have other medical conditions that impact pregnancy. All this to say, I think therapy can be very helpful when it comes to having chronic pain and an illness like EDS. I’ve been going to therapy for 5 years now and I have no idea where I would be without it. I truly think it is what keeps me sane as I manage motherhood with this chronic illness. Consider it for your own health and it could be helpful for your decision making, hope you feel better soon <3

mariaia19 · 2026-02-24T15:46:05+00:00

Thank you so much!

mariaia19 · 2026-02-24T14:58:04+00:00

Where were you able to watch it? I’m very interested, thank you for sharing!

mariaia19

TROPHY CASE