u/Rrenphoenixx

I have a project/idea in mind and would love to run it by someone knowledgeable before reaching out, or know whom I should reach out to in regards to partnering on a pilot program with them.

Or if you know of anything similar, I’d love to hear about it.

I’ve had zero legal advice regarding my case. Now, I have been told generally disability lawyers don’t do jack but file your appeal and fax med records essentially until ALJ hearing.

I have to say, I feel like the fact they sit on their ass, collecting your 25% to do hardly anything feels predatory, not just to clients, but the disability system itself.

Perhaps if cases were actually HANDLED, proper evidence and such would get more approvals sooner instead of backing up the SSA system.

Then again, it seems SSA does the same thing, mindlessly deny until hearing, which in sure lawyers would adapt to by doing little until an actual judge considers the facts.

I don’t know where the true root problem is, I just know it’s a problem for many, and I’d love if someone had any advice on what I can do to further support my case because getting my doctors to write “she can only stand 5 or less minutes” about every possible task is just not realistic. In fact, most of their notes are inaccurate, which isn’t helping. Insurance also won’t cover the testing, meds, mobility devices I need so like, at this point I don’t know why I pay for insurance at all.

I feel like I’m effed.

I want to get autonomic testing regardless, as my primary care recommended it but the nearby facility closed and we l neither of us knew where to go next.

Then I found another doctor on the dysautonomia website who claimed to do such testing, asked on the phone before signing up to do the testing, then just blew me off about it until my three months of care ran out.

Needless to say- I can’t work, can’t live on my own with my two kids and need tons of help around the house. This is no pity party- but I don’t want to be spending my husbands money on unnecessary tests or scam doctors that don’t change anything about my case or recovery.

So I’m wondering- would an upright MRI showing CCI (hopefully, as I question how detailed it really is being lower resonance/magnet) help with having evidence for SSA? I have low lying cerebral tonsils laying down but perhaps upright works show more sag? Does it affect treatment/diagnoses (aka docs stop labeling it as migraines) Or does it not really matter?

I plan on doing autonomic testing regardless because I need it to know what meds would be best for whatever type I have, but would it help my case at all? I think my case is for SSDI since I was working when I became disabled…again…

We’re playing with the idea of moving in late September/october, and just wondering if it seems realistic to budget around 5-8K for a used trailer/rv and if there’s any suggested camps/spots to park it with hook ups besides the black hills koa?

Any tips on how to prepare for winter trailer living would be helpful- where we live it’s often 100F so winter prep is not in my wheelhouse- at all. We have two toddlers as well

I’m in Southern California, but willing to go to Nevada and Arizona.

I’d likely be a cash patient because insurance stuff keeps getting in the way. So hopefully whatever option offers care to cash pay regardless if insurance is there or not. Mayo is being difficult about that.

If it matters I have Kaiser and it’s been absolute hell cherry on top of sad melted ice cream that is my body.

Any recommendations?

I’m near central/southern California. Flex/extension X-rays and MRI are not showing much- but I’m very symptomatic.

What legitimate place can I get this imaging? What is the cost?

Is there any place that can do tilt table testing with catecholamines? One that doesn’t require referral?

I just discovered that my Compounding pharmacy can make this and that they have quite a few patients that get the solely ketotifen vaginal cream and keep coming back for it so…

SO CURIOUS what this did or didn’t help especially in the context of concurring issues like MCAS or rare disorders.

I ask because I likely have MCAS, I take oral CS and ketotifen but it does not help “down there” at all. Antihistamines helped ever-so-slightly.

Would accept HML to start but also looking for impact investment groups, syndicates etc where the process could go a little faster, more funds availability and potentially cost less.

Open to resources, advice, suggestions etc. I just seem to have a real hard time with sources for this state!

In case it matters, this is not for an ongoing project. Trying to build a network I can do business with, in a positively impactful way.

Thank you

Most of what I need gets denied at Kaiser, special medications, mobility scooter, external referrals to Mayo autonomic and UDN.

I complained to member services and awaiting response but I’m wondering if the way I’m going about things needs changing? Maybeif I ask differently or use different phrasing….

Any advice would be helpful. I’m quite frustrated.

Kaiser refuses to let my doctors do it. I’ve already paid multiple external doctors cash for help with my conditions, forms etc that never follow through and I have no income like I can’t keep shelling out for another eval just to be told ehhh sorry we forgot about that, you need to come in again or, I’m not familiar with that stuff ask another doc. Then it’s like well, dammit. I got played, again.

Please tell me there’s a doctor out there who understands and isn’t going to keep bleeding me for money when I’m already struggling… this whole medical process feels predatory at this point I just want a doctor I can trust to get me where I need to go and communicate when necessary 😭

Working on ERISA proposal, have a plan to submit to rep George whitesides office but wondering if there are other modes?

I’m sort of having a bit of anxiety about just turning into some office and not having any kind of tracking as to the progress of it, is there a way to follow this more closely and remain involved with its progress?

Any tips for helping get it to the floor?

Just curious if it’s awful or awfully cool

Neuroimmunologist just referred to these two and I feel like it’s just a waste of time and more specialists I don’t want to keep track of. I basically refuse most meds at this point unless they’re immunomodulating because I have so many reactions to different meds.

I’m just a bit jaded. Seen what I thought was every speciality and they all just shrug their shoulders. I guess now we’re in the subspecialty tier.

HOW DO YOU DO IT?

Right now we live with MIL but can’t stay here forever. We (hubby and kiddos) will need to move eventually but I need to start planning out how I’m going to realistically manage this alone one day, because he’ll need to be at work. So…tips? Tricks? Suggestions?

(Side note, school/daycare is not an option)

Not sure if this is the best sub to post (open to suggestions)

I’d like to get an organization going that helps first time or low income buyers. We would buy or build the properties and finance them to buyers.

I don’t have really much money on my own and no rich family worth asking, but I know this could make money and returns for those investing, while helping folks who need it.

How could I go about this, or is there another way? I do not want to be an organization dependent on grants and donations. It feels too unstable.

I ask because- going through HML is too expensive and breaks a lot of good deals. Also would take a lot longer to work up to the point I’d rather start now if at all possible.

I’ve also thought about reaching out to companies or organizations that utilize 1031 exchange in the process of capital funding…

But this is a side of the world I know nothing about. I just have a goal and hitting a lot of speed bumps getting there, so contemplating if a different avenue might prove more fruitful and direct.

I’m open to your ideas. I’m highly motivated. If you tell me it can’t be done or to not even try- please withhold. This is my soul mission I am not giving up on it. I’m looking for the most streamlined way to go about it. Thank you for your time 🙏

None of the docs at Kaiser will do it, yet they don’t know what tests to order or don’t have them available.

I’ve seen every applicable speciality. No answers and no treatment.

I need a doctor who understands that at this point, a more specialized center or research is more appropriate. I’m tired of fighting so hard with doctors that have no further path for me.

If anyone knows a doctor who would be willing to be my recommending doctor it would be so helpful. I seriously dunno what to do anymore.

So, this gal I’ve been friends with a few years…and we have this talk where she says she so grateful I’m helping her with this stuff and that I follow up on her appointments and stuff to take care of because it motivates her.

I know she doesn’t work and hates asking her baby daddy for spending money so if we go out and if I have money, I’ll buy her coffee or lunch or whatever.

Couple months ago, I noticed her windshield was cracked. We’re talking- the driver side of the glass isn’t even connected too the base of the frame anymore (top corner hanging off) and the other side has a crack the size of a basketball. We live where it’s often 100F and her son is only 4. So one day I tell her hey, if you have comprehensive insurance, it’ll cover the windshield for free, but if not, give me your car make and model/year and I’ll get you a quote. She gives me the info- I tell her it’s $400 without insurance but if she and her man can’t do it or she’s scared to ask him I’d lend the cash for it cuz I felt like it’s a safety thing I just don’t want them to get hurt.

But then she calls me drunk the other night again (this has only happened total 3-5 times over 3.5 years just for reference ) and spends like 30 mins basically telling me she’s mad at me she says… sometimes when you talk I just think, “stfu”. Just stfu lol”

I’m like…well what is it I’m talking about or saying that triggers that? She goes “oh I don’t know…the anarchy stuff (when I discuss politics and corporate monopolies’ affects on the economy and health of people). that she’s not on “that level” with taking care of things and feels I’m expecting too much from her and she doesn’t want to talk to me about things because I’ll want to do something about it.

So I told her I’m just surprised because you told me you needed and wanted help with taking care of/ following through on things but if you don’t feel that way anymore I’ll just knock it off. I had no idea I was having such a negative impact on her and I genuinely felt bad she had such harsh feelings.

She kept referring to the parts of me that grind her gears as a separate person entirely and changed the name of that separate persona of me every time she referred to it. Anywho I asked to clarify if she meant I was acting too much like a mom to her and she found it patronizing and she said yeah and she wants me to just STFU.

Like honestly I feel like an idiot? She like asked me for help, and I’ll admit I agree I overstepped by offering to help with the windshield and buy her arm braces. I just have a world view that if you have, and another needs, just give it.

But to me, it’s like…at this point she’s said the following: she doesn’t like what I talk about, or how I talk, and she doesn’t like my facial expressions and she thinks I’m judging her (I have mitochondrial issues and more so my face has never matched what I’m thinking because my muscles are too tired to obey lol), talked shit to all her family about me instead of saying hey drop the windshield stuff mind ya biz…her family didn’t show sympathy about the situation (they never do) so THEN she called me. like what friendship are we even having? Like what even was this lol I thought we understood each other and had common ground but it turns out other than childhood trauma, we might not. Like I literally don’t know how to talk to her anymore because of what she said. Like I’m having to triple check every sentence that comes out of my mouth.

I’m genuinely wondering if I’m the ahole overstepping much more than I’m aware of?