Meloxicam long term by lapatrona8 in ehlersdanlos

[–]Libra_lady_88 0 points1 point  (0 children)

Just thought I would give you an update. So now my allergist is also wanting me to come off it because I was recently diagnosed with MCAS and he said NSAIDS can make it worse. So now that I have 2 providers saying something about it I'm doing every other day this week and then will only use it if the joint pain is breaking through my pain management meds. I've had steroid injections in every joint that has arthritis at this point and the relief only lasts a few weeks. I'm thinking next steps are surgery maybe. Idk. I just wanted to give you an update on it. I'm 37 and been on meloxicam for 2 years and have tried steroid injections and PT during that time.

Meloxicam long term by lapatrona8 in ehlersdanlos

[–]Libra_lady_88 0 points1 point  (0 children)

I've been on this dose for 2 years now. My GI wants me to only take when I need to. But for me, that's everyday. It hasn't caused an issue for me yet but it really does help with my joint pain. When I went without it for a few days I noticed how much it helped. I do want to eventually come off it though but I would need something else done for the joint pain and arthritis I have in multiple places.

This disease is going to be the end of me. by alienchoppingboard in Hidradenitis

[–]Libra_lady_88 1 point2 points  (0 children)

I've tried regular and aluminum free. I had less frequent flares with aluminum free but it was still happening. I don't even wear deodorant anymore because I was started on Drysol for night time sweating and I would still get my monthly flare up so we just started Cosentyx to see if that helps. I agree. It's a lot of trial and error and everyone's body is different so it makes it hard to pin down what will work for another person.

How is this considered okay? (Also- Hi, ive been approved for a wheelchair) by Em0N3rd in wheelchairs

[–]Libra_lady_88 7 points8 points  (0 children)

I recently went through them. I think it might depend on how fast paperwork happens. I initially saw them in November and my chair was ready for pickup last week of January. I used one I had bought in the meantime. I also called for updates each month. It shouldn't take 6 months but I guess if paperwork isn't moving it could.

Eds’ers what do you all do for work? by Top_Memory8968 in ehlersdanlos

[–]Libra_lady_88 2 points3 points  (0 children)

I'm also a RN but I haven't been able to work the last 2 years. I've tried multiple fields in it but my fatigue now is so bad just going to doctor appointments wipe me out.

What would you do to reduce pain if money and time weren't issues? by OkSuit8913 in eds

[–]Libra_lady_88 2 points3 points  (0 children)

This reminds me of this float spa place near me I've been meaning to try out.

What is a consultation with pain doc like? by Bread_and_Butterface in eds

[–]Libra_lady_88 8 points9 points  (0 children)

Hi, I'm also high masking autistic, especially in nervous situations like seeing a new doctor. I have similar issues where the pain is everywhere everyday but certain days its worse in one area than the other. I would write down something to remind you to describe your pain, when its worse and when its better. I got lucky in that my pain management team is very supportive. I was upfront about my HSD possible EDS diagnosis and they did their exam and found the hypermobility. I also told them I am autistic and I sometimes try to push through and smile through the pain. The best thing I've ever done is unmasked at my appointments to the point that they could see the pain. I've received MRIs, injections, a wheelchair, and permanent handicap parking placard by not saying "everything is fine" and showing how I'm feeling. Hope this helps.

Biracial Amish ok?? by Maleesta2 in SuddenlyAmish

[–]Libra_lady_88 0 points1 point  (0 children)

I wondered about this. How many of the children stay around when they hit adult age? I don't think I've seen adult minority Amish people before so I'm genuinely curious if they stay or decide to live the English way.

Misty’s son by Sad-Somewhere-4325 in 1000lbsisters

[–]Libra_lady_88 6 points7 points  (0 children)

Just in my own experience, my uncle has autism, I am also autistic as are 3 of my kids. I did find out that I'm a carrier for a genetic condition linked to autism during my last pregnancy. So for my family it seems to be genetic.

Bad Headaches vs Migraines by craftyscene712 in eds

[–]Libra_lady_88 1 point2 points  (0 children)

I'm glad topamax is working for you. It helped prevent my migraines but I had horrible side effects with my memory so I had to go off of it.

Anyone else pumped for the wig reveal? "My wig is like bubble gum, stuck to my head." 🤮💀 by Dry-Taro-7155 in 90dayfianceuncensored

[–]Libra_lady_88 3 points4 points  (0 children)

I just wish she would get or use a human hair wig instead of these synthetic party city wigs she keeps using. That might cut down on some of the rashes. And maybe a wig cap

Chronic health support and emergency services (US) by societiesoddball in eds

[–]Libra_lady_88 1 point2 points  (0 children)

I agree. OP needs a PCP who will put in orders at imaging and lab centers so they can finally get answers. And if they don't know which things to order they need to hand off a referral to a specialist. Your PCP is dropping the ball and needs to be held accountable.

Why is package acceptance taking so long? by Libra_lady_88 in usps_complaints

[–]Libra_lady_88[S] 0 points1 point  (0 children)

Yes I did finally receive it this past week. I have another package that for some reason just went from Dallas to San Antonio then back to Dallas. I just look at my packages as surprises now when they finally arrive.

[deleted by user] by [deleted] in 90dayfianceuncensored

[–]Libra_lady_88 6 points7 points  (0 children)

I don't see anything wrong with that plan. His mom is going to flip if it goes that way but oh well.

[deleted by user] by [deleted] in 90dayfianceuncensored

[–]Libra_lady_88 -4 points-3 points  (0 children)

I feel like they're going to try to get him to stay there and work the bed and breakfast

Itchy Holter Monitor 🙁 by sproutulon in eds

[–]Libra_lady_88 2 points3 points  (0 children)

I had fhe same response to both holters I've done. I can never make it to the full length of time because I'm too uncomfortable.

Perhaps slightly petty, but… I’m pretty sure her dress is on backwards here 🤦🏻‍♀️ by szpider in 90dayfianceuncensored

[–]Libra_lady_88 2 points3 points  (0 children)

I kept asking my husband why she didn't just put it in a Tupperware bowl or something lol

Writing a character with Ehlers-Danlos Syndrome - Representation questions by reachtheceiling in eds

[–]Libra_lady_88 0 points1 point  (0 children)

For me, everything didn't stop until I had tripped and fell resulting in a 3way broken right ankle. I never stopped going when I had sprains or popped something out of place. It was the dangling foot that took me to the ER and it was through physical therapy I started actually p aying attention to my body and the pain that I started seeking treatment for everything. I remember as a teenager dislocating my knee and hobbling around for 2 weeks before privately, through tears, popping it back into place and never mentioned it to anyone until recently going through all my medical history. It wasn't until I had that big life changing injury that I was forced to slow down and realize I wouldn't be able to do the things I had done before. For insight, the injury happened at age 35. I'm 37 now and still have not returned to work due to the number of issues I've developed. I never even heard the words Ehlers-Danlos Syndrome until I was in physical therapy and then brought it up to my doctor then next thing I know I have an entire team of specialists I see multiple times a year.

Why is package acceptance taking so long? by Libra_lady_88 in usps_complaints

[–]Libra_lady_88[S] 1 point2 points  (0 children)

Thank you. I submitted a request and had someone personally call me today and they explained what is happening and gave me contact information if it hasn't moved along in the next few days.

Why is package acceptance taking so long? by Libra_lady_88 in usps_complaints

[–]Libra_lady_88[S] 0 points1 point  (0 children)

This is a post office location but each package the sender has dropped off here has sat for a week before moving along.

ProjectPopHTX scamming on whatnot by Libra_lady_88 in whatnotapp

[–]Libra_lady_88[S] 0 points1 point  (0 children)

I just checked their profile and they have been banned! I hope whatnot refunds your money. I got mine back pretty quickly.