The disability gap for a family who's run out of options

I have been avoiding this for a long time, but here I am on gofundme, setting up a page for my family and I. This is going to be a long description/story because I don't know how to summarize our circumstances.

We began having financial trouble in 2018 and 2019 when I was pregnant with Frankie and had severe hyperemesis gravidarum. I was taking tons of time off work, exhausting my PTO and short-term disability early on, and as I was not on salary, my income dropped significantly. I had to go to the emergency room quite a few times to get fluids, and was hospitalized for a week; that's where the medical bills started. We had been a comfortable two-income family with Christopher and I being basically even, give or take the different jobs he has had. But I was always really blessed to have a stable job, with good benefits, as Mid Ohio Food Collective's Child Feeding Program Manager. It's ironic that I developed programs for food insecure families with children for 12 years and now, here we are, but that's besides the point.

My pregnancy with Frankie exacerbated all of my existing health problems that I had been managing unbeknownst to myself. I started fainting a lot more frequently, unable to stand for shorter and shorter periods of time, at times even fainting while sitting, and being so tired that I would take naps on the bathroom floor in my office for a couple of minutes every chance I got. I wasn't diagnosed with POTs and Ehlers-Danlos syndrome until a year or two later, and Narcolepsy just last year, but once I received these diagnoses, the symptoms I'd had my whole life started making more sense.

Between October 2021, and May 2022, we were inundated with more medical crises and bills. Our two year old Frankie had to have three of her teeth extracted because of their underdevelopment due to my being sick while she was in utero, she cut her lip open falling soon after due to the sharp gap in her teeth, needing several stitches. November 2021 I suffered a vertebral artery dissection, narrowly avoiding a stroke, which really threw me for a loop, and made me start taking all of my other worsening chronic symptoms more seriously, which up until that point, I had been convinced by doctors might just be in my head. That's when I got the POTs and EDS diagnoses. More unpaid time off work, more medical bills. March 2022 Frankie was bit by a neighbors dog on the face and required several days of hospitalization with IV antibiotics for cellulitis. Less than two months later, a few days after her third birthday, she was very lethargic and after bringing her to urgent care a few times and being sent home, we found out she had severe appendicitis and needed surgery immediately. More hospitalization, more bills.

In June 2022, my worsening symptoms led me to realize I couldn't keep going at work. I was taking more time off than I was on the clock and I was becoming too unreliable to feel justified to stay on. I wasn't fired, I resigned because the responsibility of my position deserved more attention and energy than I could give. Having stopped working at MOFC, I realized how much leeway they had given me, allowing me to make my own hours basically, and constantly forgiving missed meetings, rescheduled appointments, extended deadlines, fewer and fewer and fewer hours, etc. I was blessed to have worked there as long as I did, and I'm really grateful for all of the support and compassion I was shown while I was there.

I've had to deal with the legitimately shocking and disappointing realization that I am, in fact, too disabled to work. I can't rely on my body to work any kind of schedule, temp / PT / FT. If it's not fatigue, and falling asleep from the narcolepsy, I'm fainting or near fainting from POTs plus all of the other body malfunctions that happen with dysautonomia. If my body is feeling strong enough to do something for more than two or three hours, that's when the ADHD and depression really start to shine. It is literally always some thing, and I can never know when it's going to interfere with something I have scheduled or committed to. Between my two pregnancies, these events were fewer and farther between, but now there is at least something, if not several things, on any given day that prevents me from completing basic household tasks. It's depressing, but it's my reality and I am really trying to accept it, albeit with difficulty.

All of this being said, we had not planned for Christopher's income to support everyone for any amount of time, let alone the two years he has. Suffice to say, it has been a stressful and difficult time for everyone, but especially Christopher, who feels all of this weight of responsibility on him. i've tried selling the things that I make in the stretches of time that I do have energy, but I haven't been very successful, and I haven't had success finding contract type work at home - like Upwork - type stuff, which really is all that I would be able to commit to. I have been in the process of applying for SSI disability since December 2022. I have been denied three times and have a hearing at the end of June to meet with a judge and have him make a formal decision. I'm scared because I have heard so many discouraging stories about people being denied disability for years, even with much more serious conditions than me, but this is our best option for surviving going forward.

After withdrawing and using all of my 401(k), I maxed out several credit cards since leaving my job, and with student loans, and the medical bills, I am now in need of filing for bankruptcy - which I can do independent of Christopher, but for which we cannot afford to pay a lawyer. We are now using home equity to pay for the monthly expenses outside of our current budget, which is really stressing Christopher out, and I understand, neither of us were expecting or anticipating ever being in this type of financial situation.

I'm the only person in my family who graduated college, and I really did have a promising future for a minute there. But now here we are. I care less about my comfort and needs than I do for our kids. What we are doing is not sustainable, and I am really worried about what will happen if we have to wait too much longer for me to get disability. So here it is, the gofundme, I am extremely ashamed for setting this up, though setting this up is entirely my decision because I'm at a loss with how to contribute for our family. I hate asking for help and I hate accepting help, this is the most humbling experience I've ever had. I don't know what to expect, but for right now, we truly have run out of options. The amount I set the goal is basically what we would need to keep going for another year and a half if I am denied disability again. Trying to come up with a plan for what happens next. The only computer we have is a 15-year-old laptop so even if I could just get a new computer to try to do some work at home that would be amazing. If you read all of this, thank you, I hope you don't think less of me, or my family. Even if you cannot contribute financially, we will gladly accept prayers. Thank you.