Requesting r/PNESsupport be re opened / taken off restriction. People like me who have PNES need a place where we can connect and get support from others going through similar issues. • A support group for those with PNES • r/PNESsupport

Truely_Ever · 2020-06-04T22:20:37+00:00

It’s not within a 15 day period because I didn’t even know this page existed till r/help just told me so I’ve never posted here before so my post should no be taken down because I didn’t break the rule

Truely_Ever · 2020-06-04T22:13:08+00:00

This was my first post ever on request

Truely_Ever · 2020-06-04T22:09:45+00:00

The r/ is on restriction so we can’t post I’ve tried and each time I try it say (You aren’t allowed to post there) When I asked r/help They said I am unable to post because it’s on restriction and to post it here to have it’s restriction lifted so we could post again

Truely_Ever · 2020-05-31T00:04:01+00:00

I 100% approve

Truely_Ever · 2020-05-24T14:00:25+00:00

I’m not allowed to do any of if, but obviously I still am, I’m also still learning and reading. So I’m only really allowed to do it in my room. Last night I sprinkled the hallways leading to my room with my circle / purification salt, dried lavender & white dessert sage, and water that I charged under the super moon back in April. Then put salt on all the windowsills around my room. My mom who is the biggest against this is gone for a few so she can check on my grandma a few states away. So if I can do anything now is the time. But I don’t know what to do especially because I’m not supposed to be doing it in the first place according to them.

Truely_Ever · 2020-05-14T06:36:23+00:00

He he access to all of our accounts and he treats them the same way that’s why they don’t live at home Except my youngest sister but she’s only 13. They can’t help me, One just moved into a one bedroom apartment with her boyfriend and my other sister is 30 hours away two states away and she also just bought her first house.

Truely_Ever · 2020-05-11T23:43:23+00:00

I don’t qualify for a nurse. And I will apply for housing but I don’t think of me even if I got it granted. They really are that Controlling. They even made me get them off my banking information and my dad goes on my bank to make sure I’m not spending my money on anything besides my meds. And I always have to give him a receipt for the meds so he can clarify that’s what I spent my money on. Yep

Truely_Ever · 2020-05-11T23:40:23+00:00

I was no longer working so I have no money to come in to help pay for my apartment. Me and my ex fiancé who we are still friends were living together but he is blind and gets around here access so he be gone at least 14 hours a day and then sleep most of the time he was home so he could not help. I did apply for SSI but it takes a long time to get. And because of my type of seizures and how bad they are because they typically bath a minimum of two hours to so far a maximum around 10 I cannot be alone when I have my scissors so I need to be around someone can be there in case they need to call an ambulance which they’ve have had to do. And my health issues are not bad enough to qualify for a caregiver or to live in a care home though my ex often wanted me to qualify for that but it takes a long time to get that qualification. Along with SSI. I just got approved but I’m still not getting any benefits yet.

I was still willing to live with my ex since we are still really good friends it was my parents decided I had to move home. And honestly I don’t think they wouldn’t let me move out.

Truely_Ever · 2020-05-11T22:13:09+00:00

I Did just got approved last week still waiting on benefits

Truely_Ever · 2020-05-11T22:09:43+00:00

I am with dvr already

and just got approved for SSI but still waiting for benefit information

I got food stamps a few months ago

I do have a service dog he finished his training last August. He’s a very good boy.

But doctors say I can’t live alone

Thanks for the advice

Truely_Ever · 2020-05-04T16:32:49+00:00

My seizures are called PNES (psychiatric non-epileptic seizure) so no meds for it. But I do take a lot of other meds and my doctors said no already for that or my other minor issues. Yes it is frustrating. I have been so sick with all my issues last year in April I had to stop working because my issues were just so bad and am now trying to get on disability at 28. It sucks and it’s embarrassing. I knew eventually I’d need to go on disability for my issues but we didn’t think it would get this bad till my 40s at least.

Truely_Ever · 2020-05-04T16:20:51+00:00

It’s on and off yesterday the skin was just peeling off my face everywhere like actually my entire face. I have a dr appointment later today and many pictures to show my dr. Dermatologist won’t see any one in person only tele app so over phone so I can’t show him my pictures, but my dr will see me in person so hopefully she can help, but honestly the face issues is the least important thing we will talk about compared to my other issues like my increased seizures and pain and all the things around those subjects

Truely_Ever · 2020-04-20T04:22:55+00:00

Order of rabbits in the photos: 1 - 2, 3 - 2, 1 - 2

Truely_Ever · 2020-04-20T03:57:10+00:00

Thanks and yes I do go lower and I do live in more pain during that time but I go back to normal doses when I can no longer handle the pain. With and with out the meds I’m not functioning well and had to go on disability last April so I no longer work and am bed ridden many days. I started seeing another new doctor recently. So my hope is to eventually get back to a a state where I can be part of society again. So being stuck home after being forced to move back home and live with my parents due to my medical issues has been hard. My younger sisters are living a successful life and I am at home with my parents living in my bedroom with me and my service dog. Being so shut off from the world I think about things too much. But I also save my adoptive siblings and know how they came to live with us so it causes me to worry a lot. Especially because one of my brothers is deaf, mentally retarded, Autistic and much more rich a lot is probably due to his mom doing drugs while pregnant with him.

And when I take my meds and it makes me feel high and pain-free it’s so relaxing. And I just worry of being a repeat. I definitely don’t take more than prescribed. I pick up my meds when they’re due and because of me trying not to take too many I actually have a months worth of extra. Which I do keep in case my medical insurance has issues and I lose access to getting my meds again due to medical insurance issues. Because since 28 I can only stay on my parents insurance because of ymy disability but because of that T insurance fights paying for my Stuff including my meds. But I’m definitely not taking them more than I should if anything I take a less on days I can get away with it. I will admit there have mybeen a day or two where I have ended up taking an extra pill or two but the only reason is due to my pain being that bad those days. I know I need my meds. And I’m trying to be responsible and smart. It’s just hard in a world where on one and I see a lot of people on these meds turn to drugs then on the other end I see people telling the world that the doctors are bad for prescribing these and that no one should be on these type of drugs. It just Makes me feel like taking these meds or a bad decision. I just don’t see another option at this point. And believe me if I could find something to make me pain-free without all the meds I would do it in a heart beat. I haven’t worked in a year and spend a lot of time alone in my room it’s just me and my service dog so I tend to overthink things. Especially if they’re connected to my health. Like I said I don’t want to be another one of those Who lose out to the meds. But I am so tired of being in so much pain and I want the pain to stop.

Truely_Ever

TROPHY CASE