please help a nurse survive their own disability recovery

For alternative donation or educational links, scroll closer to the end!

Shortest version:

I am a nurse and activist who has been unable to work since May 2023.

I am have a great lawyer helping me with the hurdle of receiving SSDI, which will allow me the years I need to recover from multiple autoimmune and chronic conditions that have caused significant deficits.

I have been living off of donations and (unfortunately) a new line of credit. I need assistance to care for myself and my cats. I am desperate to survive so in the future I can return to healing and advocating for others.

Below is my story. Thank you for reading. Shares are deeply appreciated.

Hey I'm Lore!

I am 34 yr old queer, trans neurodivergent BIPOC nurse with a background in psychology, sociology and philosophy.

I specialize in integrative health coaching and education to promote (mental) health equity and harm reduction among transgender, neurodivergent, BIPOC individuals, their allies, & healthcare professionals.

I also practice and offer shamanic guidance and healing.

I am a proud cat dad to Yasha & Deja, as well as ~35 indoor plants which help me continue caring for others as a form of self-care.

I have been unable to work since May 2023 as my disability as been declining largely due to financial insecurity and its toll on my stress & mental health.

I was officially let go from my employer July 2024.

Prior to this I received state paid medical leave for 5 months per calendar year as long as I was still employed.

Throughout 2023 I received these payments until mid June. I had to quickly crowdfund for July & August rent, but also for what I needed for where I was moving next.

Luckily I was able to survive off of savings and donations and waited until I could reapply for these benefits again in January/February 2024.

By the end of May (my birthday) I had been back and forth to same emergency department 3-4 times for 9 hours at a time.

I was finally hospitalized in June 2023 for 5 days and discharged with a steroid taper that would last about 2 months.

This scared me as I did not feel ready not prepared to "recover" outside of a hospital setting. I cried so much the day I left and came home. "Recovery" was now a state of being and not a completed destination.

I returned home with permanent changes, such as light sensitivity, tremors, brain damage misinterpreting stimuli into pain, loss of mobility and functional loss. I can only maintain activity and exertion for about 20 minutes or when the painful warning signs start. If I do not stop, the pain gets worse, and I may end up having a seizure.

I had no idea how surviving this would look like, let alone a new future.

I was completely depressed, scared, and mourning how much my body and mind had changed so rapidly.

I attempted to work part-time in October 2023, but was unable to do even minimally-paced remote work as typing was incredibly painful. I was psychologically unwell, struggling to cope, so much so that I had to create and sign a safety contract with my doctors.

I survived off of cashing in my earned PTO, vacation, and sick time until I could reapply for paid medical leave in Jan/February 2024.

Once state paid leave ended in June 2024, my employer took the opportunity to fire me (as I was no longer legally protected under medical leave). Therefore I am no longer eligible to receive this benefit in 2025.

I am cannot file for unemployment as I've already applied for social security disability (SSDI) and am working with a wonderful legal team.

I will also be having a second TMJ replacement surgery in the early spring. I had my right one replaced in 2021, and now the left one has eroded enough to warrant a replacement. My RA primarily attacks my jaw but also attacks more common areas like my hands, hips, knees, etc. As does my fibromyalgia and nerve pain. However the jaw pain is a constant 9/10 pain and will continue to be until I have the surgery. Eating, laughing/smiling are probably the worst things I have to endure aside from walking and activity.

Though I am confident and hopeful, I am still waiting for an answer with no timeframe that I can grasp as an anchor and security blanket - thus an increase of stress and burden from juggling financial instability and uncertainty.

My ability to plan for the future and present whether it be a day excursion or simply dinner with friends, is not in my control.

I have ongoing weekly appointments virtually and in person.

I am fortunate to receive health insurance through state medicaid (MassHealth) and I receive SNAP EBT (food stamps) once a month and am now receiving their cash benefits as well.

In September 2024 I was approved to receive free rides to and from appointments.

I have a disability parking placard and am medically disqualified from jury duty.

However during this incredibly stressful waiting period, I still need to provide for my cats, plants, household, and myself.

In January 2024 I was assaulted and sustained a concussion which in turn led to post-concussive syndrome.

From May to July 2024 I was diagnosed with functional neurological disorder (FND) from which I suffer non-epilectic seizures triggered by emotional stress, physical exertion, heat/cold, and overstimulation. FND impacts all facets of my daily living and I suffer memory loss in real time, speech impairments, dysautonomia, and am prone to falls.

"...I̶ a̶m̶ a̶l̶s̶o̶ i̶n̶ n̶e̶e̶d̶ o̶f̶ a̶ n̶e̶w̶ r̶o̶l̶l̶a̶t̶o̶r̶/w̶a̶l̶k̶e̶r̶..."

THIS HAS BEEN PURCHASED THANKS TO A GENEROUS DONATION!!!

Losing my ability to leisurely walk, let alone hike - at least for now - has been a major blow to my physical & mental health.

This new equipment grants me easy access to take a stroll (very limited in distance) and begin to add light exercise back into my routine.

(my previous rollator-walker was an incredibly kind hand-me-down donation that did the job, but was just not the right fit for my needs)

It's upright so no hunching needed! And the wheels are silent and all-terrain - I love it so much!

Due to my conditions I need to venture out with ice, fans, knee & wrist braces, a legal THC:CBD vape, and FL41 sunglasses. Otherwise I end up getting sick from sunlight which results in feeling overheated (despite running on the cooler end temperature wise), extreme fatigue, body tremors, loss of or dysfunctional speech, collapse, and seizures.

Once I began to have seizures (explained further below under "my disability journey") my cats attempted to help control my convulsing by staying near me and using their weight to calm my involuntary movements.

Making sure they are taken care of is my top priority.

My plants also bring me joy and purpose, fulfilling my natural responsibility as a healer.

This GoFundMe is to help me simply survive as I continue to live in financial uncertainty.

I need help creating a financial cushion to take care of my cats, plants, and myself - while navigating multiple ongoing weekly appointments and treatments, as well as personal bills & payments like credit cards, gas, subscriptions, and self-care needs. I also still need to cover rent & utilities.

I accept monetary donations as well as purchased/delivered supplies (please scroll down for links)

My doctors and I agree that once I have a few years without financial burdens weighing me down, I can begin to recover and reset to a point where my mental and physical health will finally benefit from all of the work I have been doing with specialists and programs, and get me one step closer to healing others again, even if it will only ever be on a minimal part-time basis and remote as I am permanently immunocompromised and immunosuppressed.

Prior to June 2023, I was incredibly ambitious, active in my community, and took care of friends in need - something I was proud to provide as I have always struggled financially until I became a nurse. I actively mourn the loss of the ability to work full-time (though I always knew I would not be able to - any time I have worked FT I have gotten sick and have had a major organ attacked - skin, heart, vagus nerve, etc)

I will never be who I was before - I believe that person is permanently gone - but I am who I am now and in spite of it, am still here, committed to returning to my calling even if the journey is long and arduous.

But I cannot get there on my own.

More details of my journey are below.

My Disability Journey: From the Beginning

In 2023 I celebrated my 1st anniversary working as a family medicine nurse, primarily serving Spanish-speaking new immigrants (or in the process of) of all ages who needed to establish primary care with/without insurance.

I was months away from graduating with a 2nd bachelor's degree, which would lead to being able to certify to work independently as an integrative nurse coach, while also having a masters program already lined up to become a psychiatric mental health nurse practitioner (PMHNP) (and was playing around with the idea of dual certifying family medicine NP too)

Of course now my plans have changed to align more with what I can offer without overwhelming myself and due to my immunocompromised state (ie independent coaching/consulting, professional development training in the areas of trans health & education, neurodivergent empowerment, harm reduction and overall mental health), but I need a multiple years without financial stressors & burden to regain the mental energy and capacity to focus on anything other than coping with my conditions, turning grief into acceptance, and starting to show progress instead of stagnation or decline.

I participated in work leadership groups such as co-vice chair of the company's DEI committee, a nurse representative for a committee that reviewed patterns of antibiotic prescriptions & protocols in order to update standards of practice, and a nursing committee which acted as a pseudo-union where we created nursing workflows and provided education for our fellow colleagues.

I created Mpox education (the condition and the vaccine) for my colleagues (nurses & doctors alike).

I was the go-to resource for education and/or action relating to autism, mental/behavioral health, and working with transgender patients.

There were many times I took over mental health crises calls until an on-call mental health provider could contact them - often once they were de-escalated and regulated enough to calmly agree to accept help.

I also volunteered outside of work as the head of convention operations for a local convention that has almost 5,000 annual attendees.

I created a masking & vaccination protocol, revamped and took ownership of a memorial room, and created 2 quiet areas with dim and projected lighting, inflatable and bean bag seating, and a copious amount of various fidget and stim toy for attendees who needed a safe quiet escape from overstimulation throughout the weekend.

I also revised our disability & accommodations protocols.

I was finally financially independent, receiving respect and credit at work, and still managing a social life.

Life was stable despite my existing conditions and high level of stress, much of which I tried to detach from by focusing most of my energy into my job.

At work, I was open about my chronic conditions (including 1 autoimmune condition) I had, and received paid and unpaid medical leave accommodations that allowed me to skip infinite amount of days per month if I ever needed to for my pre-existing conditions.

This was 3 months prior to being hospitalized.

Mid-April 2023 I started to feel painful pressure behind my eyes.

By mid-May I was having problematic vision changes, intense pain behind my eyes as well as when I moved them, intense headaches, and "burning pain from the inside" throughout my body especially if I was exerting physical and/or emotional energy. This also caused tremors and uncontrollable shaking.

I can only describe this pain as getting a tattoo from the inside. It would leave me "crippled" and unable to stand/move/speak. I would later learn that these episodes were early manifestations of my current seizures - which would not get diagnosed until July 2023 - a whole year later. At the time we believed this was just a manifestation of my fibromyalgia during a stressful time, but this was actually due to brain damage.

End of May (my birthday) I had already been to urgent care 3 times for about 9 hours each visit.

I was doing a lot of outpatient testing the beginning of June 2023 and during the call relaying abnormal spinal tap results I relayed that I had started to experience brand new vision changes that day.

I was told to go to the ER to get admitted to the hospital.

I was then diagnosed and treated for optic neuritis (inflammation of the the optic nerves) and perineuritis (additional inflammation outside of the lining of the optic nerves).

I did not know at the time that I was losing the ability to distinguish color red (a classic sign of optic neuritis) nor that I could have experienced permanent changes in or loss of vision had I waited longer.

Because I waited 6 weeks prior to receiving treatment I ended up with lingering neurological issues and disability due to brain damage. I also have a higher susceptibility to relapse due to high antibodies and poor response after steroids.

I thought the intense sinus pressure and pain were sinusitis-related, but even after a rough course of antibiotics, the pain persisted. The intensity and frequency of these pain/pre-seizure flares changed to daily and constant, on top of unbelievably excruciating eye pain and terrifying vision changes.

June 2023 I was hospitalized for 5 days, being treated with an incredibly high dose steroid and would then have to do a slow week-by-week taper of dosing for 2 months.

Steroid treatment depletes me of all physical & mental energy and I suffer immensely from the negative side effects.

After a combination of the 2 month steroids taper, isolation, and neurological deficits, I could no longer walk without the risk of falling and was constantly exhausted. I slept in my living room to be closer to the bathroom. I had already fallen twice in the shower and once down the stairs. I was shaky, and uncoordinated in a way I had not yet experienced, and needed more rest than usual.

My mental health tanked and my will to live was low enough that I had to develop multiple safety plans with my doctors & discussed inpatient hospitalization.

It wasn't until around Aug 2024 (a year later) that my emotional & psychological state would improve enough that I could begin to imagine and see a future for myself, regardless of disability, and could consider living a life as an disabled person - no longer invisibly.

Unfortunately all of my treatments (infusions, injections) contain steroids so I do isolate after my treatments since I do so poorly on them.)

Though the optic/peri-neuritis was treated, the cause of all of this remained unclear as it was agreed that this was autoimmune in origin but I was clearing all of the basic tests and thus they sent labs to a facility out of state.

In July 2023, I was finally diagnosed with a rare autoimmune central nervous system condition and an autoimmune connective tissue disorder (which contributes to hypermobility and dysautonomia, and overlaps with lupus).

They also found compression & degeneration within my cervical spine which explains some of my nerve pain and other functional neurological issues such as trouble using the bathroom, swallowing, and showering.

This is now on top of what I had been dealing with already (chronic pain and dysautonomia, IBS, gastroparesis and SIBO, fibromyalgia, rheumatoid arthritis, chronic migraine, etc) AND multiple psychiatric conditions which have worsened due to stress, grief, and new dysregulation.

I now have 3 separate but overlapping autoimmune conditions that, when added up, attack my brain, nerves, muscles, connective tissue (ligaments, tendons, blood, skin), and joints.

Not only am I now permanently immunosuppressed & a complex (and experimental) case due to my conditions and treatments, but I am also now dealing with multiple contributors to chronic pain (emotional, physical, cognitive, environmental, etc.) that cannot be 100% controlled.

I wake up in pain and go to sleep in pain. If I become stressed or emotional, these feelings equate to pain.

Walking, doing chores, using stairs, and simply being outside all contribute to pain and/or seizures.

I use a variety of physical and emotional tools to make things easier for my body such as DBT skills, journaling, ice, braces, mobility aids, personal fans, stretching, deep breathing, and proper positioning to keep my hypermobility under control.

To make matters worse, I suffered a concussion in January 2024 due to an assault in my home. I was punched in the head twice. I had lingering post-concussive symptoms and my seizure/migraine headaches occur in the exact spot of impact.

From May through July 2024, I was diagnosed with functional neurological disorder.

FND is a complicated neuropsychiatric condition where emotional/physical stressors cause unrelated physical symptoms.

FND is a direct cause of my non-epileptic seizures, post-concussive symptoms and other neurological challenges.

I experience every FND symptom I have read about, which I further elaborate on under "my disability journey". (neurosymptoms.org is the primary resource)

I participated in a functional restoration program (April-August 2024) which included social work, occupational therapy and physical therapy.

This program helped me practice safe movements, learn pain alleviation techniques tailored to my needs, and learned how to pace my activities due to my functional weakness.

I am now in an FND-specific program which provides occupational therapy, physical therapy, speech therapy, and an FND-specific neurologist.

In June-July 2024 I did neuropsychiatric testing and the results confirmed some of my current diagnoses and clarified others that were in question: functional neurologic disorder, ADHD, autism, generalized anxiety, obsessive compulsive disorder (features present most when

anxious/stressed), and recurrent major depression with rapid mood cycling.

Both the OCD & bipolar spectrum disorder were expected but never confirmed until now.

Knowing this new information will allow me to medically manage my mental health in a new way, so I can better apply and practice the tools I already know and use. I also want to use my visibility to destigmatize some of these conditions.

I am on many treatments that take the edge off but I cannot take NSAIDs nor opioids. My daily symptoms are a combination of the following - with fluctuating intensity & frequency:

My pre-seizure signs and actions are a rapid decline in quality/accuracy of speech, staring off into space/severe dissociation, fine motor tremors turning into full body quivering. Once I or my roommates notice these signs I lay down sideways, ask for my migraine medication and for ice packs (for the back of my head & for my chest). I am aware and able to hear, but unable to speak or move until it is over, once the involuntary jerking movements subside. They feel like restless leg jerks but in the arms/hands & legs/feet and are completely involuntary. I may also cry during these episodes.

Due to my hypermobility I experience pain after each episode as well as a migraine.

The seizure activity last about 5 minutes and by 10 minutes I can start to sit up but still can only whisper until my speech is regained by the 15 minute mark.

After each seizure I need to sleep for a few hours.

These seizures have their warning signs but can still be unpredictable. For example, I spent 15 minutes outside and had a seizure as soon as I returned inside. I had no warning signs and was lucky that help was right outside the bathroom door. I had to soothe myself through the surprise of unexpectedly disconnecting from my voluntary actions in real time.

I participate in a weekly persistence through chronic pain support group, biweekly individual therapy, and weekly group dialectical behavioral therapy (DBT) which I have chosen to continue for more than 5 years due to its supportive nature & ongoing practice of skills to use for emotion regulation.

I have daily appointments as being chronically ill and disabled becomes its own job.

I have done and am doing anything and everything I can do within my limits and the boundaries set per my body, which change by the day.

However what I need the most is financial security.

Money has been a barrier to my recovery & why I have declined rather than improved since I was discharged over a year ago and still have more time to wait for any formal assistance.

I am raising money just so I can simply live while I wait in limbo.

Examples are: personal finances to spend on gas, personal bills (credit cards, subscriptions), monthly utilities (gas/electric/internet), cat food & litter, plant supplies, general self-care & enrichment needs such as shampoo/conditioner/body wash, general household items, and just extra cushion as financial needs arise.

Purchased Donations/Supplies:

(method of ordering doesn't matter)

Cat Stuff:

Food

- (1 can used per day)

24pk/5.5oz cans (usually need 2 for 1 month)

https://a.co/d/3JFIFkp OR https://a.co/d/0UTIL51

- (1 can per day, sometimes 2)

24pk/3oz cans (usually need 2 for a month)

https://a.co/d/0HgWRag

- Greenies Hairball control (Tuna or other flavors fine)

https://a.co/d/8yjISh9

- Kelp Supplement

https://a.co/d/46h1ZCr

Litter

- https://a.co/d/3TdzbsM

Litter Genie refills

- https://a.co/d/gPWLPHr

Plant Stuff:

- Potting mix

https://a.co/d/3U82ypd

- Horticultural charcoal

https://a.co/d/gnQwnxn

- Perlite

https://a.co/d/2CEePKS

- Plant Tap Water Conditioner

https://a.co/d/4ymPoHH

- Neem & Peppermint Oil Spray

https://a.co/d/3nHpox4

Personal/Hygienic items (please ask).

I also accept payments using:

Venmo https://venmo.com/u/Psykhedelos

CashApp https://cash.app/$Psykhedelos

PayPal https://www.paypal.me/lsnewman

Thank you again in advance for donating or just sharing!

It is truly life saving and appreciated.

With love,

Lore (& Yasha + Deja)

P.S.

Here are links to information on some of my conditions - I am sharing these to increase visibility on invisible disabling experiences. You are always welcome to ask me any questions about my conditions or the support I need! I consider myself an open book :)

[MOGAD]

https://my.clevelandclinic.org/health/diseases/myelin-oligodendrocyte-glycoprotein-antibody-disease-mogad

[RA]

https://autoimmune.org/disease-information/rheumatoid-arthritis-ra/

[UCTD]

https://autoimmune.org/disease-information/undifferentiated-connective-tissue-disease-uctd/

[Hypermobility Spectrum Disorder]

https://www.ehlers-danlos.com/what-is-hsd/

[Fibromyalgia]

https://www.hopkinsmedicine.org/health/conditions-and-diseases/fibromyalgia

[FND]

https://fndhope.org/fnd-guide/

[Gastroparesis]

https://www.yalemedicine.org/conditions/gastroparesis

[Dysautonomia]

https://thedysautonomiaproject.org/dysautonomia/

[SIBO]

https://my.clevelandclinic.org/health/diseases/21820-small-intestinal-bacterial-overgrowth-sibo

[Chronic Pain Syndrome]

https://lonestarneurology.net/blog/chronic-pain-syndrome-symptoms-causes-treatment/