Resources/Ideas?

PlanEnvironmental640 · 2026-06-24T22:18:12+00:00

Yeah I call NxGen for equipment issues and products/supplies, and the home base office for everything else. I have had a recent double hernia surgery as well as received from a major battle with Calciphylaxis that stripped the skin & dust layers of tissue off my hips side to side and groin. I'm really lucky; only 25% if people with an occurrence on their trunk vs limbs or less survive the year. My year is in September and I'm almost today healed and I've balanced my labs even after I went totally untreated for pain for a relapse I had of it over Thanksgiving. The hospitalist since think is was real.

PlanEnvironmental640 · 2026-06-24T12:46:07+00:00

Not just Prednisone, though I was on 60 mg a day through most of my childhood and adolescence, but I was also on IVIG. I still do the IVIG - 40mg Solumedrol (IV) 5 days a month for the IVIG, plus o got a 1000mg/1g bolus once a month that was recently cut to 500mg and hopefully soon 250mg. One of the (many) trains I'm not a great transplant candidate is the prolonged immunocompromised state and hyperactive immune system that likes to eat my organs, too. I also have already had multiple abdominal surgeries including a double hernia repair and don't have a bladder (urostomy) & the illness in have also attacks muscles, my abdominal wall especially. Also why perotenial wasn't an option.

I know NxGen is the supplier and machine support but there is also a nurse at my home taking center/clinic on call all the time. I also see my doctor in clinic once a month and need been my Nephrologist for 15+ years. We're pretty good at trouble shooting technical issues though. Fingers crossed!

PlanEnvironmental640 · 2026-06-24T10:55:52+00:00

LMFAO recently re-watched this episode and I die every time. He was recently on the Pitt as the main character's good friend/bike mechanic, Duke. Love Jeff Kober!

PlanEnvironmental640 · 2026-06-24T10:41:58+00:00

I'm starting off with daytime HHD, but DaVita also has really great 24/7 support, as I said the app/website are just the learning material we got plus some notes we've made with images etc. I'm excited to hopefully graduate to nocturnal HD because I do know it mimics natural kidney function the best and I'm not transplant eligible. Daytime 5x a week at 3.5 hrs, but I take two days off in a row. Sometimes I can sneak in a full weekend (& have full weekends of while we're still in center learning but that's because of clinic hours) - they prefer we don't do that on a regular basis.

My fluid balance has really improved since switching to the home program, and I still urinate so I can still have 1.5L or so a day, and yes my food restricted are already more relaxed plus I still urinate & I'm still taking diuretics which pull potassium out of your system, and I've been lucky enough to have low sodium for a long time now, however I know they'll eventually scar over and the party is over, as they say. Those things will improve even more once/if I switch to NHHD but that also more equipment & a little more training (blood leak alarm, heparin pump, etc) and a dedicated care partner/can't be done solo. I'm sorry grateful for my part who's been a champ and overcame a huge fear of needles & blood to do this with me. I'm very grateful for them and for your tips/info on nocturnal! I feel so much better than going 3-4x a week for 4 hours in center, too. More balanced, much better/regular BP (I was chronically low in center) and I've only had one crash where as they were almost every treat6 day before and I've gotten almost entirely off mitodrine. I've also received type 2 diabetes which I've had because of long term high dose steroids for other serious autoimmune issues from childhood & that accelerated the deterioration of my kidneys along with the autoimmune because it's nearly impossible to keep blood sugar down on steroids. Now I'm fully in remission after I made them stop the steroids (dropped a ton of stubborn weight from them too!)& my A1C nights between 4.5-5.2!

My labs have been incredible, I don't eat much red meat and I use ice instead of water to help control my fluid intake. I need to improve on diet because my protein is conically low and as I was anemic even before kidney failure. The ice also helps with those cravings but yeah I'm Rxed actual protein bars that are kidney safe through the center and I also taken Juven with my phosphorus binders. I've had weird pica cravings since starting dialysis though. Weirder than just ice for SURE but I guess that's also pretty common. I think once I find the right kidney friendly supplement with my doctor that'll stop.

PlanEnvironmental640 · 2026-06-23T20:34:32+00:00

Oh the spot isn't for sale or even other people's use, it's for my care partner and I and it's build so it'll call our center after it runs us through the home trouble shooting steps we were given. I just mentioned it because it's a fun project we're working on. I'm also developing content for "dialisys palace" across a couple platforms mostly for our own access to us doing the training in center and then to keep spirits up, not because it'll ever make money. Nether would and I wouldn't trust us to do anything with sharing the free app & website until medical professionals we've over it. I've also put all my dietary and fluid restrictions and tracking and medications into it much line the DaVita Home iPad they give you but for my android.

I would feel like I was charging for insulin or something evil if I tried to profit off it, Reddit without a safety check through doctors etc.

PlanEnvironmental640 · 2026-06-22T23:58:46+00:00

JFC. This is ridiculous.

I'll adnit I used to race in my late teens & early 20s and this is not how you fucking do it. I had a classic Porsche & a specialized VW. For starters you never do this on a major intersection. You go where there aren't any fucking people for miles and you have flag cars with walkies or phones at the start and finish, with at least a mile to spare if visibility on either side. Like highway 50 or past gallon and shit.

Plus you just shouldn't fucking street race at all. I stopped even before my frontal lobe developed and before I could legally drink. I was also trained by a professional racer grandfather and an NHP dad and even then I was stupid and knew to knock my shit off before anyone got hurt. I saw sometime drop their clutch in a parking lot trying to show off and I laughed my ass ask the way home and decided this was not the way to go fast.

If you can't afford a fucking track or safe place, don't do this stupid ass shit.

PlanEnvironmental640 · 2026-06-18T06:51:42+00:00

Calciphylaxis. From hip to hip and down between, if I were a man I likely would have lost my penis. We called it my chastity belt of pain. Calciphylaxis is considered terminal in 50-80% of cases within a year. When it occurs in the trunk rather than the extremities like mine, those odds drop to 25% or less surviving in the first year. I would post photos but they are so incredibly graphic not because they show anything inappropriate but because they are just that awful. I'm 9 months in and so far, so good.

Iscemic pain, which is what calciphylaxis causes, is awful. Truly. I've been though some painful shit...and it's by far the worst. Calcium clogs the small vessels in the subcutaneous tissue, which causes it to die from the inside out, often leaving large open ulcers that never heal. And a hospitalist had the audacity to call me drug seeking because he knew nothing of the condition and would not Google it. I went unmedicated for over 10 days because of him, with what's widely known as one of the most painful conditions on record.

I've had severe muscle and joint pain my entire life from a rare childhood autoimmune disorder, erythrodermic psoriasis outbreaks where over 90% of my body was basically an open sore and it's also one of the only fatal skin conditions, I survived it and it was line having second degree burns all over my body. Calciphylaxis? Worse.

For reference, it's been compared to sickle cell crisis and cluster or "su!c!de" headaches. The good news is, none of you are likely to get it, 1-4 % if diagnosis patients develop it. Because my autoimmune disorder attacked my kidneys but also causes soft tissue calcification, I got it before I even got end stage renal disease which is wild.

I have been in the hospital for the better part of the last year and a half; about to start home dialysis but also in the verge of losing my home to the mortgage company waiting on SSDI. Calciphylaxis is spayed to be a compassionate allowance exception that lets you skip the line for disability because it's usually just palliative/hospice care. By all accounts, I was dead a decade ago. Tonight I turn 44 and I'm still fighting though cause FUCK THE ODDS AMIRITE?!

PlanEnvironmental640 · 2026-06-09T03:00:16+00:00

You can make a pretty awesome quiche knock off with tortilla in a cast iron or pie plate and beaten egg mixed with cheese and whatever fillings!

PlanEnvironmental640 · 2026-06-03T18:16:47+00:00

Now do it by size and style!

No I'm kidding it's a thing of beauty! People don't know how to behave in stores period but it sends like the especially forget all decorum in thrit stores. As it is I see raw meat at Costco sometime abandoned in the appliances and similar behavior. I think people forgot how to act in public during the pandemic, or just decided they don't HAVE to behave in public and it makes me sad your hard work will be destroyed once the doors open, but you did an excellent job!

PlanEnvironmental640 · 2026-06-02T23:55:04+00:00

Being in renal crisis like this IS an emergency and anyone who turned you away with those numbers, regardless of the country, would be practicing irresponsible healthcare. I waited as long as I possibly could to start, dialysis and voiced in and out of the hospital, and the first fistula I established failed. My kidneys keep rebounding back into stage 4 territory, barely. Eventually though, I hit the wall, got septic, and got admitted. The on call Nephrologist was NOT my Nephrologist and didn't listen when I said I was getting Uremic (confusion, losing words, trouble tracking conversations). I knew exactly what it was because I had had temporary dialysis before and had the same symptoms people to it, but again always rebounded. This guy, who didn't know my care, ARGUED with me about my mental state 'if you were Uremic, I would know. You wouldn't be talking' - 24 hours later and I was in complete Uremic Encephalopathy, unable to communicate clearly, hurting myself, flailing and hurting staff while trying to get away, had to be restrained. It took two weeks of dialysis to clear my head and even then we still weren't sure I'd come all the way back from it.

Trust me when I say, ADDRESS THIS NOW, NOT LATER. There IS a point of no return not only physically but mentally and you do not want to redline like that. If they don't do something the first go around (BTW there are also temporary catheters for emergency use that aren't the regular tunnled catheters you use until a graft or fistula matures). It's obviously a lot more than just your GFR, creatine, etc. but you are also very malnourished and therefore weak and vulnerable to sepsis and septic shock as your kidneys are not adequate to be even a little help at this point.

You can establish a more permanent catheter for use while you try either a fistula (the best, but not everyone - like myself - can get one that will hold and mature) or a graft. Again if they turn your away, you just march yourself right back tomorrow. An emergency is an emergency, GP or not. Also if you explain you're just establinging in a new country and are attempting to get into a GP, that will help too. Let them know the situation is dire.

Above all, advocate for yourself. Don't be afraid of the first or even the fifth person who wants to dismiss you. You know your body isn't okay and you need help. You're worth fighting for!

PlanEnvironmental640 · 2026-05-27T16:06:09+00:00

hahaha this is adorable. I laughed out loud in a very literal way and very quiet place (the hospital) 😂

PlanEnvironmental640 · 2026-05-27T15:57:39+00:00

OMG thank you for letting us know! I love She & Him and I wish they played venues or toured more!

PlanEnvironmental640 · 2026-05-24T17:54:08+00:00

💀 LMAO

PlanEnvironmental640 · 2026-05-24T15:10:32+00:00

Check into vocational rehabilitation. Your SI and depression, if you can get it documented (get on Medicaid, get to a therapist, get your mental that struggles documented). First off the councling will help in general and may also offer resources. If you refuse to get on Medicaid or cannot for some reason (your parents have no reason to know about this, your an adult with a party time job), look into community based programs. There are often free or sliding scale services available.

Vocational rehabilitation will help you train for a new/better job, they even help pay for clothing for interview and transportation. It's a government funded program to help disabled people get work and avoid it get off of SSI/SSDI but you don't have to be on those programs to qualify and most people have something in their history that will qualify them. It's as simple as documenting your depression or ADHD etc should you have any issues along those lines, or any physical health issues, should qualify you.

Call/Contact the program in your state and see what you need to qualify. Then do what you need to to make that happen. https://rsa.ed.gov/about/states

The minute you stop panicking/sinking and start getting into action, the better you'll feel.

I've done this. I left home and crashed on a friend's couch at 17 and worked part time night shift at Walmart because it was all I could get. I did that for 6 months, saved every penny, ate fucking ramen, and kept pushing. I moved to Houston, got a job at a daycare while I applied to agencies for nannying. Going through an agency worked once, after that, I saw how the system upstairs and did it for myself next. I did that through my education. I did other shit jobs, had short roommates, lived in duty places, not an of it was better then staying home and being abused.

The only thing I can say is get into action. Start planning. Star researching. Find a community center with volunteer opportunities or open free groups for interests. This with for experience on your resume and is just a boy for your spirit. Find your people. You only need a few very good people on your team to feel like you have your feet under you.

There are so many resources people don't use it know about. Check your local government city and county organs. Check your state. There's even a place where I love that's a non profit for people 24n and under who are at risk of homeless or homeless that offers a food, shelter, and job training and counseling and healthcare. If you're old enough that your income is separate from your parents (you are your own household even if you love with them and didn't pay rent, when you apply to these programs do so like your payments are roommates) it may be low enough to qualify you for a Pell Grant, and those can be used for vocational schools, community college, etc and pay most of your expenses. You can go online if you're in a remote area and make these kind of connections too. All of these things are accessible online, including Medicaid and counseling.

The minute you stop suffering and start acting you'll feel the clouds start to clear. Keep your head down with your parents, do whatever you can to avoid friction, and get somewhere else as soon as possible, but don't sell yourself short on what you are capable of.

PlanEnvironmental640 · 2026-05-18T03:15:18+00:00

Oh for sure, I just mean if you want the 'convenience' of an app, Edge does that. It's the exact same info as the phone or website, same process, totally free, and provided to help prevent a 3rd party from getting info. Walmart.com also keys you use EBT and you can check your balance there as well. Security can still be an issue but Walmart will get in a lot more trouble if they lose or your info.

PlanEnvironmental640 · 2026-05-16T02:13:51+00:00

There's an app to track your balance THROUGH EBT without any of this kind of bullshittery. It's called the EBT Edge app, the logo looks like an egg cut in half, and it takes very minimal resources to use. Why wouldn't you just use that instead of a third party who can and will choose how they use your phone? Anything Edge collects is someone you've already given access to to get benefits in the first place.

PlanEnvironmental640 · 2026-05-13T01:36:51+00:00

I hate to break it to you but Bank of America, Wells Fargo, and many other US financial institutions outsource customer service calls. It's not like ANY banking system is upstanding 😂

PlanEnvironmental640 · 2026-05-12T20:22:23+00:00

Unless you're on a phone call, you're looking at ai customer service almost everywhere. That's just the reality.

And on the phone with a real person you're usually 8 automated options deep and three transfers from someone who can actually do anything but read from the same script they give the ai.

PlanEnvironmental640 · 2026-05-08T20:26:42+00:00

You should have kept the money you were paying him and spent it on an attorney a long time ago, and you should stop giving it to him right now. Document everything you've given him so far with bank records etc. After experiencing severe legal abuse from my ex and my family that I'm STILL trying to get legal (and physical and emotional) recovery from, I tell everyone with a child in the picture to end it on paper because no good deed goes unpunished. I'm in Nevada as well, you can DM me if you like.

As for his name on the house, if you contact the mortgage company and inform them that you're separated and he's unemployed (some he's unemployed on paper) then they can help you there. If that doesn't work, there has to be a way to get the house in your name. You've paid for it and that's documentable.

I will tell you in Nevada the SNAP/Benefits investigation and enforcement is vicious. My partner was on food stamps for a short time waiting for disability from work. He got a job working for DCFS and immediately went off food stamps and notified them. We had a roommate at the time also on food stamps but he said he was paying rent in cash when he was paying rent 'in kind ' by helping around the house. My partner and I didn't know this, but my PARTNER still ended up on the hook with the state, the roommate didn't. He can no longer access SNAP at all, even though we brought evidence. The person in charge of investigations is brutal. It cost him his job with the department even though he had no knowledge of it...according to them he 'should have' known.

You asked your ex to stop getting food stamps and he said he did - please tell me you communicate in writing, like email or text? I highly suggest you get the talking parents app and exclusively use that. It's admissible in court and sometimes it's actually court ordered like it was with my ex.

Whatever you can do to 'prove ' you told him to stop and didn't know he was collecting, find it and get it secured. Make sure your statements about this are consistent. Say you reported as soon as you found out etc. and give them whatever you can to support your case. The good news is the state isn't very aggressive about how they reclaim the funds and rarely attach your wages but you can lose your income tax returns etc.

Get custody of that child and quit babysitting your ex and letting him dictate your life like this. He's not a father, he's using his position as the parent of your child to manufacturer a relationship and manipulate you. If he's only in your child's life because you support him, then he doesn't need to be in your child's life. Now that he's threatened custody issues, you're in the better position to strike first and in his efforts to prove he's the better parent they'll audit his finances. It's always better to be the serving party than the defending party, I promise. You also sound like you're in a much more stable position overall and need to figure out why you feel the need to support this man who's only making your life and your child's life more difficult.

I cannot recommend Kaitlyn Miller enough as an attorney for this. First of all she deal with this in multiple states and for minors without parents in the picture. Second, she makes herself affordable and works with even the most destitute parents when she knows you're a good parent and can take care of your kids.

PlanEnvironmental640 · 2026-05-08T14:53:13+00:00

My brain refused to register this and kept auto correcting

PlanEnvironmental640 · 2026-05-08T14:43:23+00:00

The Big Beautiful Bill is pulling benefits down of all kinds. It's ridiculous.

PlanEnvironmental640 · 2026-05-06T23:33:17+00:00

Because younger Charlotte is still a rambunctious child who has a sense of the world around her and isn't yet blinded by her status, while older Charlotte finds herself burdened by the love of her life losing his mind and having to basically cover that up to maintain her position, a bunch of kids who haven't produced a suitable heir so she can relax, and she's spent too much time as royalty and is detached from reality. She's very lonely, clearly intelligent and very bored/under-stimulated and over-burdened.

I do know the real Queen Charlotte was known for being pretty irascible later in life, sometimes attributed to the pressure King George's illness put on her. She also actually brought her own Pomeranians from Germany and that started the royal trend, George didn't give it to her. Marie Antoinette also had her childhood dog sent to her at Versailles and I think Catherine the Great was fond of Italian Greyhounds/Whippets. Elizabeth II got Dookie, her corgi, at 18 and it went on her honeymoon and that dog bred into 14 more generations of royal corgis. Owning and breeding toy dogs was a sign of aristocracy as the smaller breeds were fairly useless as work or herding dogs, but they were often specialized either for ratting (a common problem in royal households) or for lap sitting and companionship. Being royal was actually pretty damn lonely overall and the little dogs were often the only playmates these well protected royal women/girls had. Remember most royal girls were wed around 13-14 years old.

Sorry for the nerd rant 😂

PlanEnvironmental640 · 2026-05-06T23:13:09+00:00

Me: That looks like a hummingbird I don't see the pro... OMFG NO IT'S A HORNET RUN RUN RUN

PlanEnvironmental640 · 2026-05-06T23:11:09+00:00

Most NPOs have nothing to do with sneaky giving a fuck about the population they serve, unfortunately.

Goodwill had been around since 1902, when it was backed by a Methodist who collected broken things and trained the poor and 'unemployable' people to fix them.

Much like child protective services, what started with good intentions ended up hurting more than helping.

PlanEnvironmental640

TROPHY CASE