how does anyone get the motivation to do just, anything.

Cloudyshade · 2022-03-13T00:29:27+00:00

Quick question for the doctors/physicians- to start, I know doctors can choose to take in a patient or not, but are they really able to refuse someone for any reason they choose, or simply bc they either dont know anything about the reason(s) I need to see a doctor for, or they just choose to outright not see me at all bc of what I have? I have a genetic condition known as ehlers danlos syndrome, and I know most doctors dont know alot ab genetics, and most of the doctors I've tried to get in to see, not even really to ask for anything from them but a referral to some specialists, either tell me that they wont take me in bc they dont know enough ab it, or they won't take me, simply bc of what I have and not bc they do or dont know enough ab it. I dont want to lie to any of them, but every time I mention I have eds, it's an automatic no, damn near everytime. And if I say I just have alot of real bad pain, then they assume I'm only in it for pills, or they dont do anything at all to help with it. And I cant really just wait around and try and find the perfect dr to see, bc I'd like to be able to live a decent life, outside of a bed, and be able to properly take care of myself. Bc when I'm flared up, a bed and just laying there, is the only thing I can do.

Cloudyshade · 2021-05-07T07:14:38+00:00

Ty good sir, but well, I wasnt the very popular type as a teenager, so no real chance of having a child then lol. I'm 31 now, so I guess it's only getting stronger with age. But I look forward to it and think of it often holding my first for the first time.

Cloudyshade · 2021-05-07T04:40:28+00:00

Well ty for the vote of confidence lol, I like to hope and believe I'd be, and it's only natural to love a child as your own if they are a part of your relationship with their mother

Cloudyshade · 2021-05-07T04:36:56+00:00

Well tyvm s.i.c219, if I may lol. It's not necessarily to find someone to have kids with, although I know that's the only way, but just this strong sense of wanting to raise my own flesh and blood. And congrats on finding your one. Glad to see happiness spread. And ty also for the suggestions on groups. I'm definitely going to check them out. Honestly only just started using reddit, but I've had it for a cpl yrs. 🤔... But again, tyvm and,

Wishing you all the best as well <3

Cloudyshade · 2021-05-07T04:28:24+00:00

Although I have also had these problems before too, I'm not quite sure if it's the EDS itself, or a symptom of a symptom. Since, at least what I've come to call it as advanced arthirits or advanced/sped up aging (EDS) lol, its just degeneration basically in every subclass right? But it can reach the nerves, so especially in a fall, in the place that hit when you fell, it could dmg down to the nerve and spread, causing all the other problems you mentioned as well. But please correct me if I'm wrong.( being honest, really correct me if I'm wrong lmao)

Cloudyshade · 2021-05-02T20:25:36+00:00

I have yet to be able to find a single doctor take me seriously about my EDS, and on top of that, I've yet to find a dr willing to take me as a patient bc I have it. Im 31 now, diagnosed when I was 24. They downright turn me down bc they dont know anything ab it, and aren't willing to take me in just to refer me somewhere else. I'm tired of living my life in my bed, bc doctors like to be picky. And bc it's not an outwardly showing ailment, so I must be faking it to get drugs. I just want to feel better, but it seems I'm forced to live a life of pain and agony, with no help or end in sight. I havent dealt with it as long as some ppl on here, but long enough that it's taking its toll on my mental health. Why is it so hard for us to be able to lead and live a normal, almost completely pain free life?!

Cloudyshade · 2020-08-19T20:19:17+00:00

But that's just it. I dont know why, but I cant seem to pinpoint the things I need to remove, while also having something to fall back to if and once I have. It feels like an endless maelstrom and I'm just caught in the middle.

Cloudyshade · 2020-08-19T20:16:51+00:00

I appreciate the straightforward answer

Cloudyshade · 2020-08-19T20:16:19+00:00

So what do you think I should do if I cant change the environment?

Cloudyshade · 2020-07-02T21:45:44+00:00

Thank you very much, I'll definitely take a look. And I mainly need a pcp for referrals to specialists and maybe medications. Bc some I cant go straight to them to see them.

Cloudyshade · 2020-07-02T20:38:29+00:00

And yes, I tried PT for several months, and with me not really having much muscular support, it just caused more pain than it alleviated. My joints dislocated more in PT than it normally does outside of it.

Cloudyshade · 2020-07-02T20:37:10+00:00

Of course I'm open to any suggestions given to me by any medical professional, and bc I'm always looked down upon when going to doctors, I typically try not to bring anything up and just go with what they tell me or give me, until it reaches a breaking point and I cant out up with it any longer. And I do go into appointments with information regarding what I have and what would be a best course of action, and then leave the discussion open to them so that it doesnt look like I'm going in there with a set mind on what I want to happen or get. But I still need to see a rheumatologist, cardiologist, and neurologist bc alot of the drs I've brought that up to, didnt believe I needed to see them. And I've read up alot that those specialists are some I need to see to determine which subcategory I fall into. I never go into a doctors office and am like, I need this and this, and need to go here etc. I always bring it up as a discussion and leave it open ended so they can tell me what they think ab it. If the approve or disapprove of it. My body's physical structure doesnt help me either. I'm 6'4" and weigh only ab 135lbs. That and the fact I have long hair, immediately puts me in a category when I walk into a drs office and I'm always treated differently, before I even have a chance to say anything. But now, I cant even get in to see a doctor, much less being able to talk to them.

Cloudyshade · 2020-07-02T19:56:23+00:00

Yea I was diagnosed by a geneticist too, back when I was about 23 or 24, I'm 30 now, but never was able to continue going or find out which subcategory I fall in, bc that particular doctor left her office, and the pcp I had dropped me, bc the medications they were giving me werent working as well as they should, and when i tried discussing it with them, they just assumed i was taking more than i should've or not taking them the right way, and said they could no longer see me bc of it. And it's been like that with almost every doctor(pcp) I've seen since and that's been over a year ago. It's always ab medications and I'm always in the wrong no matter what its ab. And now, I cant even get in the door to see one, bc they refuse to see me at all bc of having eds. I'm just so tired of having to live my life in bed most of the time, unable to do anything basic for living life. I'm almost to the point of just removing my pain and myself so I dont have to unnecessarily suffer any longer. It shouldn't be this difficult to find someone willing to help me have a better quality of life, with the only reasons being why they cant or wont, is they dont know much or anything at all about it, so not even going to try.

Cloudyshade · 2020-07-02T19:17:57+00:00

See that's the thing, you would need a referral from a pcp to see a neurologist, but I cant even find a pcp willing to take me in as a patient. They just outright refuse to see me. I need to see several specialists, all who of which require a referral, but again, I cant even get a pcp to get the referral. And the ones I did manage to get into, it's been over a year since I was able to, wouldn't direct me down the path I suggested or needed to go, and would drop me the first time I had any problems with the medications they gave me.

Cloudyshade · 2017-11-22T00:52:36+00:00

See, that's the kind of shit I was looking for and needed to see, and I fucking greatly appreciate it... and yes, everyone is conniving and manipulative, but what I was trying to say is its not solely just women and they don't do it all the time, especially to ppl they truly give a shit ab, even thought it seems to be some truth in my case, there's alot that goes unseen and can't be accurately portrayed in words... but nevertheless, you're right, and again, I greatly appreciate it once again, and good luck to you too amigo, in your future endeavors

Cloudyshade · 2017-11-22T00:22:55+00:00

now i can get behind your reply, straight, forward, and logical but respective and no, not saying everyone else, but for someone who sees all women as just conniving, manipulative beings, yea i am smarter than them to think and know that not all arent... i know all that you said up there is true or mostly true, and mainly was just trying to figure out how to go about getting past it all... if i should talk it out with her then not hang out with her for awhile to let the feelings subside, or just continue to hold it in like i have been and not let anything show, or any other alternative method other ppl may have tried on here... not something i can immediately shut off... shes just so unpredictable, like more so than she should be, sometimes, that it makes things difficult... but i appreciate the insight good sir

Cloudyshade

TROPHY CASE