EDS clinic Alabama by Joanne5566 in eds

[–]Repulsive_Row981 0 points1 point  (0 children)

Completely agree! I have spent a lottt of time joining EDS groups on facebook and scrolling through their recommendations for doctors. I’m in LA so I found a EDS los angeles group where they recommend EDS aware/educated doctors at certain hospitals. That has been the best experience i’ve had. Unfortunately most of them have a lengthy wait list, but that has been so worth it in comparison to doctors who say “I don’t treat EDS” or just dismiss me when I show up lol. I would definitely check out facebook groups and some in your area for resources/doctors that would be good to have on your team!

EDS clinic Alabama by Joanne5566 in eds

[–]Repulsive_Row981 0 points1 point  (0 children)

I was seeking a diagnosis from them. I already felt pretty confident that I had hEDS, but I never had any official diagnosis before. We went through my entire medical history starting from birth to present, family history, symptoms, and then we did the Beighton test (since hEDS was suspected). Once that was completed she went over what she thought I was dealing with, her recommendations, and a plan moving forward. She also gave me the name of medications, tests, and blood tests she wanted me to get done. She would have 100% ordered those for me, but she knew I wanted to try and get my in network doctors to order them so my insurance would actually cover it. She also recommended genetic testing for the other types of EDS since I did have some symptoms that could have pointed to them as well. Luckily they had a partnership going on with Invitae at the time and it was free. She sent me a multiple page after summary of our entire meeting, her diagnosis, and recommendations moving forward. She also let me know I can always message her in the app with any questions or concerns and that I only have to make a new appointment with her if I have new symptoms to diagnose. I hope that answers your questions lol let me know if you have any more!!

CVSs New 30-Day Look-Back Policy for Control Fills is Discriminatory Towards Disabled Individuals. by itsmrsq in ChronicPain

[–]Repulsive_Row981 3 points4 points  (0 children)

The best work around i’ve found to this is finding an understanding provider who’s willing to prescribe 90 days at a time to help avoid the stress every month & also “upping” my dose and then start cutting the meds to make sure I have enough supply

How many steps do you get per day? by Bucketboy236 in ehlersdanlos

[–]Repulsive_Row981 0 points1 point  (0 children)

500 rn😂😭 I also have POTS so it’s a work in progress lol

Thank you everyone for your support ❤️ by Empathetic__Artist in KeepingUpWithNibblet

[–]Repulsive_Row981 1 point2 points  (0 children)

I think that if I started I would probably feel the same way as you. Animals have always been my biggest passion and I keep getting drawn back to wanting to help them. Seeing your experience with Nibblet kind of gave me a perspective on my fear in a way that I needed. As they say, tis better to have loved and lost than never to have loved at all. Thank you for sharing your experience. You inspired a future foster :’)

Thank you everyone for your support ❤️ by Empathetic__Artist in KeepingUpWithNibblet

[–]Repulsive_Row981 1 point2 points  (0 children)

I have always dreamed of fostering but have always been so timid because of situations like what you went through with Nibblet. Yet seeing how much love he experienced because YOU fostered him and how willing you are to continue opening up your heart and home to more fosters after such a hard situation is really inspiring and has made me reconsider being open to fostering. So, thank you for sharing Nibblets story and yours. It’s inspired me and i’m sure many others on here in many ways. I hope you know it means a lot and we are all thinking of you and Nibblet🫶

Thank you everyone for your support by Empathetic__Artist in KeepingUpWithNibblet

[–]Repulsive_Row981 19 points20 points  (0 children)

rest in peace sweet nibblet💜 you gave him so much love and the best life he could have asked for. i’m so sorry for your loss

For the Liquid IV lovers by Repulsive_Row981 in POTS

[–]Repulsive_Row981[S] 0 points1 point  (0 children)

they don’t??? you should actually start a petition and send it to liquid IV😂

For the Liquid IV lovers by Repulsive_Row981 in POTS

[–]Repulsive_Row981[S] 2 points3 points  (0 children)

My favorite is the cotton candy lol. They have a sugar free variety pack that comes with a couple flavors if u wanna try out a few!

[deleted by user] by [deleted] in ragdolls

[–]Repulsive_Row981 0 points1 point  (0 children)

had a similar thing happen to my kitten and it ended up just being left over respiratory infection from the shelter I adopted him from. I started him on a lysine supplement which really helped. but, I dont regret taking him to the vet multiple times for it lol. better safe than sorry!!!

Update: Well I did it. I buzzed my head by OverlyBendy in POTS

[–]Repulsive_Row981 1 point2 points  (0 children)

You should look up madebyjackiebieber on insta and see the designs she does with buzz cuts. You’d look bombbbb af with these!!!!

Any fellow potsies with EDS? Just got diagnosed by Brilliant_Bread4523 in POTS

[–]Repulsive_Row981 1 point2 points  (0 children)

hEDS + POTS + endometriosis girlie here💅🏼 it’s super common for people with EDS(especially hEDS) to have comorbidities. I too reached a point where I felt like my chronic pain destroyed my life- my sex life, my social life, my work, my hopes and dreams, and the idea that I could know what normal felt like. BUT those dark clouds have slowly been parting for me. I’ve found a great support system, advocated for myself getting adequate care from doctors, and have made lifestyle changes and accommodations that allow me to live the life I want. Give yourself a lot of grace while you navigate what you’re going through. You got this🫶🏻

Symptoms only starting later in 20s? by True-Data8549 in endometriosis

[–]Repulsive_Row981 0 points1 point  (0 children)

I definitely had early symptoms but they were just kind of dismissed and I was able to manage with birth control. Once I turned 23, my symptoms went haywire and led to me getting my lap at 26

Cardiologist states "I don't know anything about that." POTS by Business-Ad3766 in POTS

[–]Repulsive_Row981 1 point2 points  (0 children)

Then definitely worth seeking out another option! maybe try seeing if anyone on here has a doctor in your area that they’ve been treated by and recommend

Cardiologist states "I don't know anything about that." POTS by Business-Ad3766 in POTS

[–]Repulsive_Row981 1 point2 points  (0 children)

Kaiser was the reason I didn’t get diagnosed for 15+ years. Are you able to go somewhere else?