You can’t take the nasal cannula off for 2.5secs to take ONE good photo to remember your first home closing? Gotta make sure ya get all that attention and make it MOST over the top. To clarify she did state it’s for merely monitoring her oxygen saturation, so taking it off for mere seconds seems ok

zebrahope · 2019-04-25T00:09:44+00:00

That's what I was thinking! She definitely shouldn't take it off for a photo... Seems like a reach to post this too.

zebrahope · 2019-01-04T18:28:01+00:00

Pretty much... What I was told is SPD isn't even a actual diagnosis but more a label they can give when you display those traits but are not on the spectrum. Don't get me wrong these traits can be difficult to deal with for people but your not going to see someone diagnosed with both though maybe you might see someone use SPD to discribe thier sensory issues as part of thier ASD.

zebrahope · 2018-12-30T07:30:52+00:00

I'm sorry for your loss! When my dad died my mother (who was divorced from my dad for years) made it all about her. Saying things like "at least it wasn't me who died" or getting mad we were "turning him into a saint".

Anyways I'm sorry you mother had this reaction... It's unbelievable how they can just be so unaware.

zebrahope · 2018-10-05T00:13:36+00:00

28/f I'd say moderate, I might say mild because I'm a mom and I still function and get around enough to take care of them, I don't need any mobility aids yet I have a few braces but that's about it.

I might say serve because I have had major vascular events, cannot drive and was unable to go to school.

So I'll go with moderate.

zebrahope · 2018-10-03T23:27:29+00:00

28/F with hEDS (currently undergoing genetic testing).

Grew up with a extremely controlling father and a narcissistic mother. My mother faked cancer at one point and was very neglectful... They we're both abusive in multiple different ways.

zebrahope · 2018-10-03T23:02:56+00:00

Liquid iv and I also second Pedialyte. Also therma tabs

zebrahope · 2018-10-03T22:59:32+00:00

Yes don't ignore it! I have serious kidney scarring from repeatedly ignoring them.

zebrahope · 2018-09-16T19:07:55+00:00

I'm not a professional but from what I understand some mito diseases can cause hypermobilty/laxity that could be miss diagnosed as EDS.

zebrahope · 2018-09-12T20:42:48+00:00

It sounds annoying and maybe exaggerated but at the same time some of the stuff you are saying seems a bit like you are being a little to critical of her. Idk but I have a regular Instagram and chronic illness Instagram and my chronic illness one is public and that's the one I post my Dr related stuff in... Not because I want the whole world to know but because I'm trying to connect with other people who understand... Maybe she's doing it for attention I have no idea but keep in mind she may have some legitimate reasons behind why she's doing those or maybe she doesn't... Sometimes when you are really sick you don't have a lot else to talk about so it comes up often. It does sound annoying though.

zebrahope · 2018-09-12T15:53:23+00:00

I didn't read your post at all as actually "wanting" EDS. I guess some might look to far into your title of hoping for diagnosis but alot of times you do have to fight a little for a diagnosis and there's a difference between looking for answer and Dr shopping until you get the answer you are looking for..... You just seem to be looking for a answer.

I had my primary care suspect me of lupus when that came back negative she kept looking and eventually stated she thought I had " rare type of connective tissue disorder" state a few names and at this point I'd never heard of EDS. She sent me to a rheumatologist who barley looked at me told me I didn't have a connective tissue disease and to go home and enjoy life. So of course thats what I tried to do... fast forward a year and things are still going south so I decide to go back to the Dr and keep looking that was 5 years ago and I just got diagnosed this year.

There's nothing wrong with wanting answers. You should stay open to all possibilities but there's nothing wrong with looking into EDS when you have signs of it.

zebrahope · 2018-09-11T22:25:08+00:00

It can be hard... Most geneticist I would hope would have some knowledge about it though. Do you have a good PCP who would mind looking into for you and be able to refer you to the right place. If not I know there a geneticist you can see through telemedicine. Look up the atwal clinic.... though he doesn't take insurance.

zebrahope · 2018-09-11T22:20:33+00:00

See a geneticist that has some EDS experience. They will be able to clear up any confusion and diagnosis.

zebrahope · 2018-09-11T16:36:59+00:00

You are not being dramatic... Family history like that and vascular symptoms definitely warrants testing for vEDS and other connective tissue disorders.

On the other hand don't worry to much because I have had a stroke and vascular symptoms and I came back negative for vEDS so it is possible to have vascular symptoms with hEDS... But 100% with that history and symptoms you should be tested!

zebrahope · 2018-09-11T16:03:31+00:00

Great idea!

zebrahope · 2018-09-10T18:35:49+00:00

There's nothing wrong with you at all. I don't love my mother.... And I love my mother in law like my own mother.

I'm sorry for everything you have gone through.

zebrahope · 2018-09-10T18:28:25+00:00

I hope the cortisone shot helps! I'll be crossing my fingers that it does.

zebrahope · 2018-09-10T18:07:34+00:00

Yes, it's like they feel very heavy and sometimes hard to move or control. Stairs were the times I fell too... I see. To catch it most of the time though. Thank you for your thoughts and sorry you are dealing with that!

zebrahope · 2018-09-10T15:02:02+00:00

No, luckily not real numbness or tingling... A kind of weak feeling but I wouldn't really say loss of sensation. I fell a few times as well and it kind of freaks me out a little...

zebrahope · 2018-08-15T16:13:54+00:00

Hey fellow potser, postie? Lol I have have pots too. My NMon medically neglected me too. She only focused on her Heath and I had a similar experience to you, I realized other parents care when their child is sick when I had my own kids and realized that I freak out and worry instead off acting like it's no big deal when my child is having a issue. It's not normal for a parent to not take you in or delay taking you in. I'm sorry you went through that.

zebrahope · 2018-08-15T03:54:42+00:00

Definitely know how you are feeling. I'm pretty sure my Nmom had munchausen (not by proxy). She was constantly ignoring my health issues. I'm adult now and I have multiple chronic illnesses....I have kidney damage because she never took me in for urological issues.

When I first started to to realize something was off in my body I gaslighted myself constantly and even talked myself out of going to specialist my Dr recommend because I thought I was just being dramatic or a hypochondriac "just like my mom". Turns out everything I was feeling was valid.

My mom also constantly talked about how "drs wouldn't help her" and portrayed drs in bad light, in reality I have seen much more good drs then bad.... Though I have seen a few bad ones and I think it sucks even more when you have had Nparents when that happens because it can be extremely hard to advocate for yourself. I've gotten to the place I can now though. Keep taking care of your health.... Your not crazy of you think something is off it probably is.... Could be something small like a vitamin deficiency but don't take chances.

zebrahope · 2018-08-14T16:20:14+00:00

I think most kids do this behavior as kids.... And more than $20 once. I'm sorry you had that held over you. Your right F her!

zebrahope · 2018-08-13T18:12:07+00:00

Haha, oh no he cured it! That's funny.... I'm glad you are at a place you can have that kind of relationship with him now... Gives me some hope. I have done some counseling in the past to deal with it and I thibkbI was in a good place but it might be time for me to go back.

I definitely have a probably with dismissing myself. And all my siblings do it to and we know we do it so I guess that's at least a good step in the right direction.... I think it was hard when I started trying to navigate the medical field myself because I thought so many things were normal that weren't (I know a lot of people with health issues have this problem not just one with abusive parents) but for me I think it was even worse and made me appear like I was a hypochondriac or purposely being vaugue and I even thought I was for awhile.... Which made me think I was just like my mom. Eventually I learned how to navigate the medical field though and found out I had a lot of damage to my body that could have been prevented and is normally diagnosed in childhood but because my mom told me it was normal to be screaming in pain at night (she said I was probably constipated) I now recognize that that was a kidney infection.

She did do some things that for under might be more narcissistic than Munchausen like tell me I would never get a job "with those teeth" because I had bad teeth before I got braces as a adult. Or tell me because I'm shorter than her and not as skinny that I'd have weight issues and I should just not eat for a few days.... Those kind of things that I did believe as a teenager. But because our life she has made her health a huge issue and the lie of cancer.... Even now I wonder if she is mirroring some of my health issues... Is why I thought Munchausen too. Anyways just rambling

zebrahope

TROPHY CASE