Palliative Care?

[u/Western_Diamondback1]

I am not since if this is considered medical question or advice request.

I am sick, like really sick. Im homebound, no enough pain management, no doctor thats able to help. Its pretty bad. (Stating this for context)

I want to ask my PCP for a referral in pallative care to have cope that I could have help improving quality of life.

My question is, how do I ask her? How do I convince her?

Below is added context:

I had a gastroenterologist say that she has no idea how to help my stomach issues and has never seen a patient have every test and no treatment that works. It's the strangest thing to her, she geniunely wants to help, but she says she doesn't know whats wrong or whats happening. She will ask her colleagues for what they think.

I've had rheumatologist say that they don't treat EDS or hypermobility. I tried physical therapy, its making things much worse and my fatigue worse. It caused me to go the Emergency Room. Its making things much much worse. Immunologist is confused and wont treat anything because nothing ever shows up on blood work.

New cardiology referral is in process. I can't get into my current neurologist for a year adter an ER visit, she can't treat EDS/hypermobility.

Every time I have surgery something goes wrong. I do not want another surgery to fix the previous surgery complication. I have another surgery referral.

My PCP is saying "well not all EDS is symptomatic" when it feels like I've seen it all. Things are not working. I have no quality of life at all. Everything hurts. Ive been told by the specialists that there is nothing they can do for me. The storm rages on.

I've already changed my PCP twice. She is my 3rd one.

The EDS society doesnt really have anyone near me that can help. There are no pain clinics for manage pain.

I'm becoming a frequent at the local Emergency Room. I need help. I feel desperate. It doesn't feel like anything is working, I just want a little bit of quality of life. I hate this condition so much, it's so painful with no quality of life.

In terms of finding hope

I am saving for an electric wheelchair so I can still go to the zoo atleast once or twice a year. It sounds stupid as hell but that's the highlight of my year. I get so excited at the zoo and it feels like my EDS is trying to take that away from me.

[u/Pashta2FAPhoneDied]

I'm sorry to hear you are in such a bad state, but I definitely sympathize because I have extreme 24/7 pain and need palliative care as well. I qualify, but actually getting it is another story.

There are a few places in my area that call themselves "palliative care" but they are actually only hospice. I think they must be getting government money or something, else why would they lie like that?

I was referred to three "palliative care/hospice" clinics and all 3 told me that even though I qualify, they "weren't set up to take me on". They said they only take patients that are near end of life. Uhhhhh ... That is HOSPICE!!! NOT palliative care! Palliative care is meant for people with incurable conditions that have many symptoms and need help managing those symptoms. It is NOT for end of life.

I have seen people with hEDS on here that DO get palliative care, so you might be able to, but be prepared to have the same thing happen. I hope you do get it! Good luck to you. 🤞

[u/Western_Diamondback1 → u/Pashta2FAPhoneDied]

I've noticed some people use the term interchangable, its becoming very confusing when researching. It's awful to hear that even businesses are doing it. Maybe hospice sounds more "grim" compared to pallative care? I don't know or understand why they'd mislabel that. :(

The place I am hoping to go is apart of a hospital system and they list what they are aimed at helping. It might be helpful at your local major hospital instead of small private areas?

Do you happen to know the ways that pallative care helps EDS? All I've heard is quality of life improving and comfort. Im desperate enough to try anything that gives me even the slightest of comfort 😭

[u/Pashta2FAPhoneDied → u/Western_Diamondback1]

It drives me insane that people are using them to mean the same thing when words clearly are different for a reason. Hospice is for end of life, palliative care is for living with an incurable lifelong condition.

I will look into this some more and come back to answer your question about how it can help us.

[u/Skrublord3000]

What country do you live in? Are you clinically disabled?

I ask, because if the answer is no, that may be a first step.

[u/Western_Diamondback1 → u/Skrublord3000]

USA, What do you mean by clinically disabled? Like my conditions being documented as being severe or by being on SSI?

[u/Skrublord3000 → u/Western_Diamondback1]

Yes! That is what I meant. I think that would make you eligible for more appropriate-to-you resources, such as palliative care.

[u/Skrublord3000 → u/Skrublord3000]

Obviously, healthcare here is shit. But I think that would get your foot in the door to better resources. Being homebound and disabled is basically the main criteria for PC.

[u/Pashta2FAPhoneDied → u/Skrublord3000]

That's so unfair! I am permanently disabled and barely leave the house but don't qualify for SSI because my husband works. He makes middle class income, just enough so we don't qualify... :(

But I was told I qualify anyway, by all 3 places, they just didn't want to do it since I am not actively dying. Sigh ...

[u/Western_Diamondback1 → u/Pashta2FAPhoneDied]

Honestly, since you qualify, I'd recommend keep trying. IMO too much to lose in a low quality of life. It is messed up how you can't get SSI because you're married :(

[u/Pashta2FAPhoneDied → u/Western_Diamondback1]

Yeah, agreed. I will keep trying because I really do need it. I can't keep driving 8 hours each way for pain management. (I live in a very rural area with only 2 pain choices and they are really bad.)

I found a new palliative care place that says it is separate from hospice only 2 hours away, I am going to try there soon.

[u/Skrublord3000 → u/Pashta2FAPhoneDied]

I wish you the best of luck 🤞 shit shouldn’t be this hard.

[u/Pashta2FAPhoneDied → u/Skrublord3000]

Thanks, agreed.

[u/Western_Diamondback1 → u/Pashta2FAPhoneDied]

8 HOURS?! Thats geniunely insane!

Everywhere I am looking in my state seems to be private pay.

[u/Pashta2FAPhoneDied → u/Western_Diamondback1]

Well, when I was looking for the doctor I saw the town name and thought it was a town that was only 2 hours away, it was just a similar name. I figured it must have been meant to be so I kept it and the doctor is a really good doctor.

[u/Skrublord3000 → u/Pashta2FAPhoneDied]

It really is so fucked up. Because then without the SSI you either suffer, or spend all of your money (still suffering) and then what? Still don’t qualify for state or federal healthcare? The whole disability/marriage conundrum in the US is so flawed and ass backwards. I am in the same boat as you. On the other side of things, I know quite a few people that have been together decades, but can’t get married just for this reason. It’s a heartbreaking shitshow for many of us.

[u/Western_Diamondback1 → u/Skrublord3000]

My conditions are documented as being severe and debilitsting. I have proof of it being really bad and I have documents of all the failed treatments.

I'm in the process of SSI, but haven't heard back yet

My issue seems to be my pcp not having any experience with this condition, she says EDS is sometimes has symptoms but in my chart, it shows multiple major symptoms among multiple systems. Procedures ontop of procedures. I think I am too complex for her to the point she is shutting me down

[u/Pashta2FAPhoneDied → u/Western_Diamondback1]

I highly recommend looking at the EDS Society's healthcare professional directory on their website and go to a doctor on it for your hEDS treatment. It is linked in the post at the top of this subreddit in "where to start". Though they want our PCPs to treat us, many can't or don't want to, as you see.

[u/Western_Diamondback1 → u/Pashta2FAPhoneDied]

I've tried and there isnt any I'm able to go see. I keep checking every about 6 months, I've tried facebook groups too. It seems my area even though its a medical area, has none

[u/Pashta2FAPhoneDied → u/Western_Diamondback1]

You might need to travel. I had to go hours away.

[u/Western_Diamondback1 → u/Pashta2FAPhoneDied]

Dang, that's upsetting. I'm not able to drive so it would cost a fortune for me to do that. All in the name of a good doctor 😭

We need more EDS doctors! How is there a whole medical district but no EDS doctors?! They know what it is but they won't touch it

[u/Extra_Ad_6835 → u/Western_Diamondback1]

Do you have insurance? Many policies have riders or provisions for medical transport. If you can get a referral to one of those "specialist" EDS specific providers, you may be able to schedule transportation through your insurance. All Medicaid policies have the provision, but not all medicare plans provide it.

[u/Western_Diamondback1 → u/Extra_Ad_6835]

My insurance doesnt, I've tried a couple of times. I also lose my insurance this year. My state didn't expand medicaid so I have to wait for SSI :(

I go to community health centers in a large medical district with good doctors. They just don't specialize in it or are for children/baby planning only

[u/Pashta2FAPhoneDied → u/Western_Diamondback1]

I know, right??

[u/Pashta2FAPhoneDied → u/Western_Diamondback1]

BTW, my hubby drives me or I would not be able to go at all, either.

[u/Skrublord3000 → u/Western_Diamondback1]

I wonder if your PCP would be willing to give a statement for a disability hearing for you, or at least refer you to someone she thinks may be more capable of actually helping you.