GoofballDrummer

Thank you for your response, Pistol; I appreciate it. I have considered speaking with a social worker, though there is one concern and that is that I am also the primary caregiver of a family member with a terminal illness and have fears of being separated. He is of sound mind, but has been treated as though he is not because of lack of physical capabilities. My plan is to get us both moved out and get an aid to come during the day (which his insurance should cover for a certain amount of hours per week I think), but I've had to "tiptoe" around social workers for a long time since I and he were children. I won't go into extreme detail, however, this has been a major concern holding me back. I've been told there are certain things people are legally required to report to authorities, and I'm uncertain if this carries into adulthood. My worst fear is my family member and I being separated; the best scenario would be us moving out together and avoiding a huge uphill legal battle. We also have pets, and I know of a no-kill shelter but I'd rather not have to give them away. I do realize that I have to be realistic. My hope is to build credit with a starter card so finding housing will be possible (I realize this will take time, but I feel it's good to plan ahead). The weather here has been pretty bad, but it's supposed to improve a bit after getting hit with a polar vortex, so it should be easier to get out, which has been an issue. I have a consult with a surgeon because of ongoing gallbladder issues, and I'm meeting with a GI specialist for all the gut-related maintenance needed. After that, I need to switch to an internist who doesn't tell me I need to get off of my heart meds because POTS is a buzzword for mental illness... it's been difficult for me getting people to believe passing out and a bizarrely high heart rate isn't hypochondria (sorry for the mini-rant there; I digress). I've been having sleep issues, so getting that addressed would be next (so I can get to a job without being late), then getting a referral to a clinic for the most glaring issues, POTS and EDS. Is it possible to speak with a social worker without people jumping to getting too involved, i.e. us being torn apart? I make certain my family member gets adequate care, and he is not the receiver of the abuse, I am... I worry what would come of this. My apologies for bringing up personal issues. I know this situation is complicated, and I don't want to burden anyone. I just don't know who to ask, and am wary of speaking to the wrong person and getting split up, which is one of the reasons I opted for asking anonymously. I at least have a rough idea of where I want to be, and what I want to do. I just don't know how to get there safely. Again, I do apologize. Thank you. Please be well yourself and good luck on your journey as well, as well as anyone reading this.

Hello. I'm new to the forum and have a few questions. I admit my posts sometimes get a bit long, which I attribute to trying to be as thorough/efficient as possible because I'm pressed for time, so I apologize in advance for the lengthy post; I'm just trying to cover all the bases. Please bear with me. Basically, after getting passed around in the pediatric system, which is a story so long I could write a book about it, right before I turned 18, I was sent to a rheumatologist who had me demonstrate all my circus tricks and was diagnosed with Ehlers Danlos syndrome. I still passed out all the time. I finally turned 18, switched PCPs, got sent to a cardiologist, who had a tilt table test done (I vomited and almost ruined my new shoes which were a birthday present, fun times) and was diagnosed with POTS. I'm 19, I'll be turning 20 in a few months. I've had to deal with a lot of distrust from the local medical community and face stereotyping based on my age ("you are young and inexperienced, it's anxiety"/"you're female, it's hysteria"). Please do believe me when I say these have been issues I've been dealing with as a constant battle when advocating for myself. I'm taking cardizem which certainly is improving things, but I have a complicated (read: abusive) home situation and I need to get financial independence as soon as possible. I know these things can't be rushed, but sooner is better. If I lose my residence, my insurance will be revoked, so I can't just leave right now for a shelter if I can help it; I have other health issues as well, my medications are expensive, and other medical costs add up. I need to get things thoroughly addressed so I can things under control with my health and be able to work. I'm opting for work instead of disability because of how long it will take to get it approved based on criteria, my age, and I need to move out as soon as possible. My POTS isn't to the degree that I need a port, and I only need to get IV fluids occasionally. If I can get a better hold of my care, I do have the physical ability to work. I need to work full time with benefits: because of my health complications and costs, I can't afford lose my insurance. There's no part time employment with benefits available where I live (I don't actually know if this is even a thing, honestly), and I'm fine with full time work. I don't have any family or friends who can help financially or provide a place to stay, even on a temporary basis. I'm constantly threatened with being kicked out, and I really don't have anywhere to go. So here's my question: what financial resources are there available, if any, for getting costs covered or lowered, to get me to a center of excellence like the Mayo clinic in Minnesota or the Cleveland clinic in Ohio? These are the two closest to me (Michigan) so they'd be the most viable. Are there non-profit organizations that could cover costs, be it for visit costs, or even travel? Like I said, I can't work until I get things thoroughly controlled, so I don't have money. My insurance won't cover anything out of state. I've already been to Ann Arbor, and I was told there wasn't much they could do and told to go to either clinic instead. We don't know what subtype of POTS or Ehlers Danlos I have, and I was told that testing to figure that out would be done at a center of excellence instead; and that a treatment plan would be formulated at the same visit. Also, which clinic would you recommend based on experience? Any and all input is greatly appreciated. As a note, I understand my situation is complicated with my home situation, but like I said, because of the risk of losing my health benefits, there isn't much else I know what to do besides try to get financial independence and move out. If things get dangerous or to a boiling point, I want to clarify I do have a backpack with the very essentials in case I wind up kicked out or have to leave; I know where the local shelters are, and I know how to use the bus system. I don't have morbid thoughts or ideations, so I just wanted to clarify that and ease any worries that may arise. I have hope, I want to live (hopefully for a very, very long time), and I want to pursue better health, a career and greater education (I do make sure to keep things realistic, of course). I just am not sure what financial resources could be available if any, to get to a center of excellence, and that's my main focus with this post. I do apologize for mentioning the abuse situation: I know this isn't the place for that, which is why I'm not going into details, but the reason I mentioned it in the first place is I wanted to stress that I'm pressed for time and could really use some suggestions. Again, I really do apologize; I hope this doesn't get me banned. I understand there is a time and place for everything. I certainly hope I did not come off as impatient or rude in any way, this was not my intent at all; I want to be as polite as possible so I hope I did not offend in any way, and I want to offer my sincerest apologies if I did. Thank you for reading, and I appreciate any advice or response. Take care and I wish you the very best with your experiences and hardships that you may have ahead of you in your journey with dysautonomia or any other obstacles as well. Regarding the gaps in time of my replies: Unfortunately I'm under constant pressure, plus my schedule is unpredictable; as such, I hardly have much spare time, so I don't see myself posting things very often online at all: I apologize if my responses are a bit late. I intend to get back with people as soon as I can. Any and all patience is appreciated greatly; thank you.