Seeking Help While Waiting For Disability (& now car probs)

Hello beautiful humans,

My name is Mollie Bryan and I am seeking aid while I navigate the application process for disability. The following will include several details regarding my life long struggle with health and my decade long battle with myself trying to avoid the inevitable of applying for disability. I apologize that it's still quite lengthy, I tried to eliminate quite a bit and apologize if it's a bit choppy because of it.

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Goal Explanation:

*I have lowered the goal I originally set, while the $10,000 is likely necessary over time based on most applications taking 6 months to 2 years to be approved, it is a bit intimidating on the forefront. The funds would be focused on maintaining lifelines and self sustainability such as health insurance, dental insurance (unfortunately with EDS comes bad teeth and increased risk of infection and further health issues); my car payment as a lifeline to specialists, procedures, and tests. Approximately $1.6k is owed on the financing and paying off would remove a ton of stress, lessen my monthly expenses by about $300, and be the first car I've ever truly owned. The funds would also be to keep up with medical bills/procedures and further testing- many require at least a partial payment up front, helping maintain other bills, and assistance with groceries and sustenance/other needs during extreme flare ups.

I am still working part time, but unfortunately I usually average around 12-15 hours a week, with some variation for flare ups, good weeks, and random task unavailability. And unfortunately recently with the increase of symptoms, insurance messing with my medications, and lack of tasks my hours have been a good bit less -- which is why I'm quite a bit behind on my car payment and a few others.

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Early Life:

I have experienced pervasive health issues which never quite allowed me to live a normal life since, well, before I can even quite remember. Having so many ear infections I needed surgical tubes in my ears in infancy, severe allergies and asthma being discovered around 4, and my first seizure and epilepsy diagnosis at the age of 5 causing me to be one of, if not the only kid to be singled out during lunch breaks in order to take medication – thus beginning my ‘forever unique’ and sometimes seemingly embarrassing navigation of life as colored by the lens of all things medical.

This fascinating immune, asthmatic, allergy blend leading to plagues upon plagues of various types of respiratory infections, strep, walking pneumonia, and flus (even the Swine Flu) every time I turned around – especially during school and when working in office. (One pairing of these was an especially fun time during AP Calc senior year, within weeks of each other, if I recall correctly during key points of intro/teachings for functions and integrals.) In 6th grade I spent multiple weeks in the hospital with E. coli, turning it around just on the cusp of renal failure – enter my first experience of discrimination over pain medication – as codeine was ineffective and at 10, I was already ‘under-reacting’ to an adult dosage of morphine despite having never had any opiates before unless rarely within specialty cough medicine. (I could probably write a short book on the things that went wrong or made little to no sense within this illness adventure, but I’ll leave it with Scottish Rite saved my life and if I had been transferred even 8 hours later, I likely wouldn’t have made it. I will forever be grateful.) Constant aforementioned infections aside, in high school I also developed migraines so bad I had to have a preventative that stopped your ability to taste carbonation as well as affected your ability to sweat and leaving one over-heating easily. During this going through several neurologist appointments and trying just about every treatment known to man and even injections not helping once the migraine got started. In senior year of high school, somehow acquiring viral meningitis – being diagnosed via a botched spinal tap from which my lower back and left leg have never been the same. With my migraines continuing through my time at Georgia Tech, I was informed it seemed as if I had occasional brain swelling contributing as well (in hindsight, I imagine this was my Chiari Malformations effects, but having only been diagnosed with that in the last year, I’m not quite sure).

I started playing sports when I was rather young and continued through Varsity for the first part of high school. Subluxations, sprains, and shin splints were common -with the occasional appearance of dislocations, fractures, etc. Given pain I had started to have consistently, I quit all my activities and was seen briefly by an ortho who stated that I appeared to have juvenile arthritis and was recommended physical therapy which helped minimally, if at all. Thus began my initial quest of trying to get doctors to listen to me regarding both the pain and illness/immune potentiality as something was just not ~right~. I tried seeing school doctors, specialists, more PT and nothing was quite ever figured out, leading me to drop out of university much to my absolute horror and sadness. To shorten this part significantly I’ll leave it with I’ve always loved learning and was so passionate about my biomedical engineering/Pre-Med double major at Georgia Tech, even my psych/business double major at KSU and those things being ripped away, hurts so damn bad.

Mid-20s to Now:

Enter: The Fibromyalgia Diagnosis. Generally, doctors will try to eliminate similarly manifesting disorders/illnesses before diagnosing the patient with fibromyalgia as there are no direct tests for it. The willingness of many doctors to diagnose it without looking into terribly much else in the last decade or so has led many to view it as a ‘throwaway’ disease. I mentioned being in pain, sick, and fatigued all the time, the doctor in this very quick clinic setting told me, ‘It sounds like fibro’ and provided me with a prescription for gabapentin – there were no tests, no further discussion of my long-term experience of illness and immune issues (like being the only one for the E.coli or viral meningitis, etc.), nothing at all. Given my lack of information at the time, and well, excitement to have even been listened to that much, I didn’t push. The gabapentin helped splendidly at first – giving me even some of my first pain free days in years and years. Ignorantly, I made my follow up appointment at a rheumatologist by just stating that was my diagnosis and despite me explaining the way everything occurred, lack of testing that was done, and varied symptoms, they refused to do anything further. In fact, it wasn’t until 2021 when I returned to Georgia and saw a PA at Walmart Health that I was even given an ANA blood test (for antibodies related to autoimmune and inflammation issues). This PA was SO baffled by this thought, she had me send her all of my previous records from the two rheumatologists and was just astonished that the test wasn’t there. This, unfortunately, didn’t change much as the rheumatologist she referred me to did effectively the same as all those before with the new addition of confirming the ANA and sending me on my way. The rheum that followed was recommended by a friend and, at first, seemed like there was going to be some follow through. But to keep this brief, outside a test that only shows up on about 30% of people with Lupus and ignoring her PA who actually wanted to start me on something that had potential to help- nothing was accomplished here. To shorten: Rinse, repeat with one other rheum last year.

Backtracking a little before covering recent updates - I feel it important to mention what boils down to essentially the last decade, especially, being a battleground amongst myself and my body - trying to fight tooth and nail from having to file for disability. Despite already knowing that it was extremely unlikely for me to be able to get to my dream career in neurology, I was still reasonably in love with the workforce. I had started working rather young and enjoyed most of my positions with doggy daycares and even some serving, but Data Entry/Project Coordination seemed like a position I would be able to maintain for the long haul and I was damn good at it. I loved random crunch deadlines, needing that attention to detail, seeing projects come to fruition, and was promoted within the first few months at every position except for the last one – where my health had truly started to nosedive faster than it ever had before. Despite loving these positions, each one ended earlier than I would have liked almost exclusively due to my health issues and between each new position, I warred with myself fearing that the next one would turn out much the same – that I would continue to disappoint myself in each new endeavor. But where would the cycle end? I could squeak out more than disability provides for tiny bits at a time, leaving myself unfulfilled but able to avoid the negative restraints that come with disability and still able to do... something. Given the worsening and increased consistency of my pain and fatigue, I was required to resign from my last full-time position in 2019.

Initially while looking for WFH positions, I was plagued by the same fear from before, but on steroids. I felt like I wasn’t equipped for anything that was being offered, even things I had done before, everything was now a Herculean task. I tried transcription, task work, and more – eventually landing on the position I’ve had since 2021, which I’ve only been able to maintain because of its insane flexibility, and arguably still working myself to death – except now that means struggling to get 20 or sometimes even 15 hours in a week. And when I do manage to squeak that out a week or two in a row, a flare up hits, some error with medication, or some issue with the hour system inevitably hits and I’m spiraled into a hole of having to beg for help all over again. I’m not even certain I really considered myself having made it out of the hole hours and release issues caused around the holidays and then here comes Aetna requiring a PA for a prescription opioid they’ve already let me have and not providing any sort of weaning schedule for it. Spending the bulk of the two weeks with cold sweats, headaches, extreme stomach pain, regular to flare up pain range + the pain of withdrawaling itself, crying at everything, suicid@l, and so much more – I was lucky to not have seizures or worse die. Separate doctors have stated I should file this with the state insurance commissioner, so I will do so – if it helps prevent even one person from having to go through what I did when there are supposed to be support stop gaps to prevent it, it’ll be worth it. Between the withdrawals and moving, I spent just over two weeks unable to work at all. This has left me two car payments behind, one car insurance payment behind, without help will soon be two behind on health insurance and dental insurance, and two credit card payments – which I perhaps stupidly have almost maxed out trying to avoid asking for help again and again. Just one medication, all the perceived headway I’ve made crumbled into the abyss.

In the last year, I found a neurologist who also agreed things were ‘not right’ and within a 2-month period had 5 MRIs, 7 by the end of the year. Through these we discovered a Chiari Malformation (blocking part of my spinal fluid flow), several desiccations, pinched nerves, marrow issues, endplate changes, spondylosis, and other issues – leading my pain clinic doctor to tell me he’d seen better spines in 80 year olds, and currently determining official diagnosis for sacroiliitis, marrow issues, and things in my SI joints - these also thankfully leading to a pain clinic that is knowledgeable about medications interactions, efficacy, and various health issues influence – that has listened to and trusted me in regards to meds, procedures, and not forcing me to get anesthesia for my epidurals, injections, and RFA/ablations. I've also been able to find a psych forward thinking enough to use genetic testing to evaluate potential med efficacy, listens to my list of tried meds, known and potential issues, and works with my input to decide my treatment of my ADHD, bipolar, anxiety w/panic attacks, PTSD/cPTSD, and shifting agoraphobia. Through the same company also finding a therapist who is kind, attentive, and consistently remains baffled at the insanity of the rest of the healthcare system. I’ve been all but diagnosed with GERD, POTS, and MCAS - receiving verbal commentary from doctors and being in the process of waiting on the more ‘specialized’ specialists (LOVE that doctors more or less don’t include any of this in their records ever it would seem). I have within the last month begun seeing a new rheumatologist who at least to some degree has made me feel more heard than any previous and who has taken an interest in the number of methylation mutations I have, as well as HLAB27 gene mutation and a few other things. However, she’s not yet provided any additional insight, or any documentation in my forms about the autoimmune relation despite saying it to me and has prescribed a special folate blend for the methylation, but restarting on hydroxychloroquine again – supposedly to be in addition to a immunologic soon. And despite meeting several of the criteria for hEDS and/or two types of genetic based EDS, genetic markers linked to collagen issues, genetic markers linked to EDS, and other things she has more or less said that she doesn’t think a genetics referral is warranted, which has left that feeling more than a bit glossed over and as if putting too many eggs in the methylation basket so to speak.

And despite all this benefit of the last year, between having not even started treatment on my neck/cervical spine or shoulders (or anything other than lumbar and just starting SI for that matter), still not having an official autoimmune diagnosis or even someone at least putting a place marker in ‘unspecified’ for now, having to reschedule my endoscopy/colonoscopy, sleep study, and others due to lack of funds, -heck wishing I had funds to just go do a separate genetic study or non-insurance specialist but no funds, and other bits and pieces I feel like the surface has barely been scratched. Then adding all these medications I’ve tried, treatments I’ve tried, meds I’m re-trying despite there being plenty of others in certain rights that I haven’t, and I’m still feeling what I can only describe as moderately better than without but still not anywhere close to normal... and I am so weary. I’m absolutely terrified I’m going to be denied for disability because of how little doctors have been willing to look past the basics or most ‘common’ of illnesses, how little they seem to have notated, and how little compassion or belief seems to be in most of their faces when I try to explain how I feel to them. I miss existing - I miss seeing friends, I miss going to shows, I miss video games, I miss dancing, I miss helping people, I miss weddings, funerals, baby showers, birthdays, leaving the damn house, I miss being someone people can depend on, hell, I even miss work.

And for however cheesy or trite or ‘poor me’ it sounds -- what I’m doing... what I’ve been doing for years now... is not living. This amalgamation of constant ache, stiffness, constant shooting, stabbing, burning, radiating etc etc etc pain -- constant eyes and body hooked to giant sandbags weighing me down, SpongeBob memory file cabinets all knocked over and on fire, and/or navigating through Silent Hill levels of fog, no matter how much or how little sleep fatigue -- and constant hair falling out, never too far from a spiral stress is NOT life. And no, disability, especially with its issues, won’t wave a magic wand to fix that or most of the problems ~directly~ anyway. But... I’ve got to try. Despite all my fears and uncertainties and hatred for how much I’ve had to ask for help in the last few years – I've got to prostrate myself here before you (again) to beg for any assistance you can provide while I continue the ongoing battle against my body and begin this new one. I need and oh so desperately want to truly live again.

Provided here is my current general monthly budget. (Forgive that there is portions cut off given GFM's crop style.) I am still trying my best at my work from home part-time job, but as mentioned above my hours are not exactly enough to cover everything which has caused me to use the credit card to cover bills. Previously it was a bit easier, but with the new year all 3 insurances went up, I had to take out the Sunbit dental loan in order to prevent losing more teeth that auto-debits $50, and the law firm took my rather small debt to court now auto-debiting $50 a month as well. All of these things happened either concurrently or one right after another and has really added to the stress spiral.

With getting put this far behind during the loss of medication and withdrawals and losing usage of some things that weren't mine in the move there are also some less important but still rather to relatively important things that I need as well (biggest example: I'm currently on a rather thin and bit too firm Twin XL mattress on a metal frame and while it's not outright excruciating it is causing additional sleeping and pain issues).