HOPE for a #RareDisease Patient

Hi. I'm a rare-disease patient, and I need your urgent help:

MY LIFE UNTIL NOW:
I used to be OK. I had a difficult life. I survived a long history of childhood abuse, kidnapping, and violent crime, but I worked, for years, to build a better life for myself ,and, above all, to have a safe home of my own. I had hope. I worked my way through college, finished two degrees and some graduate work, became a Mensa member, taught at my local university, and ran my own business. I struggled to rent a modest home in a beautiful suburb of southern California. I was an opera-loving classical musician, composer, linguist, writer, university instructor, educator, researcher, quiet book lover, metaphysicist, spiritualist, ethicist, minister, intuitive, holistic naturalist, herbalist, raw vegan, animal-rights activist, victim advocate, cat & fur-family lover, daily nature walker, cozy-home dweller, quiet candlelight-and-incense nocturnal introspective, introvert, polymath, and intellectual. I loved to be safe and quiet in my own, squeaky-clean, peaceful home, with my cats. I loved to hike, miles per day, through my local mountains, beaches, lakes, and preserves. I loved yoga, daily meditation, going to the opera, early-music concerts, and museums. I loved playing the piano, harps, and many other instruments, singing, reading, discussion, thinking, studying, learning languages, listening to opera recordings, and seeking obscure operas. I loved making my own herbal teas, clothing, incense, tinctures, lotions, and skin-care products. I always strove, and struggled, to have a peaceful, spiritual, ethical, intellectual life, and to have the peace of my own home. Throughout my life, I always had some, serious health problems, I was always severely limited, but I lead a healthful lifestyle, and I was OK. 

WHAT HAPPENED:
But my life changed dramatically in 2013, when I became sick, so sick that, by 2014, I was bedridden, and in so much pain that I wanted to die: I had been under a period of extreme, prolonged stress, I had to enter a victim program in 2012, and I was placed into a small, remote home that had some serious health problems. This was a trigger for my weak immune system and other health problems. I seemed to contract an acute illness, with strange neurological symptoms, pressure in my head, and pain in my back. Then, I became too weak to move, to speak, or even to breathe sometimes. My organs seemed to slow down, and sometimes to stop working at all. I had been 100-110 LBS my entire, adult life, but I began gaining weight rapidly, until I was twice my size within one year, even when I couldn't eat, or food would sit in my stomach for hours while my abdomen expanded severely. I had severe, unbearable pain in my spine, and my arms and fingers became weak and numb, while my hands and feet swole and became red and hot. My legs would go numb when I sat. My usually super-flexible joints and spine became stiff. My limbs were swollen, and pitted when touched. I could no longer walk or care for myself. Basic tasks, like showering, brushing my teeth, or dressing myself, were exhausting and impossible. I had five concussions in one year, from falling, mostly in the bathroom, but once during a seizure. My spinal and abdominal pain could not be controlled by any natural means, all pain medications failed to work or had horrible side effects, and finally, most narcotic medications made me sick or did not provide consistent relief. No one knew what was wrong with me. Until 2015, when I was finally diagnosed with a very rare, life-threatening, endocrine disease, Primary Adrenal Insufficiency, or Addison's Disease. But that was just the beginning...

LOSING EVERYTHING & DISCOVERING RARE DISEASE(S!):
Addison's Disease explained a lot, but not everything that was wrong with me, and certainly not my pain. I had to keep begging for answers, and for help, but it was a struggle to find capable doctors who knew anything about just this one, rare disease, and who didn't dismiss all of my symptoms. Most often, I was told that these extreme, life-altering physical problems were psychological, even after I had medical evidence of Addison's Disease, and after I provided my medical history, and provided my psychiatric records, with normal, trauma-related diagnoses such as PTSD. I was told that I was not in pain, but that I was a drug-seeker instead. I was told that I had no physical illnesses, but that I had a conversion disorder (Freud's female hysteria), a psychosomatic disorder, or Munchausen syndrome. I was sent to psychiatric wings, with no evidence of psychosis, when I entered hospitals with empirical medical emergencies. Meanwhile, my emergency symptoms of Addison's Disease went untreated, and all of my other, strange symptoms grew worse. By 2014, I started to lose hope, and I expected to die. I couldn't work, I had no money left to live on...and I lost everything:

In 2015, I had to enter nursing care, but I had become so sick so quickly, that I couldn't plan for my possessions. I didn't have any living family (my cats also died in 2013-2014), and all of my friends had melted away. I had to dispose of my personal records, pictures, and special items. Then, I had to ask charities to come to take all of my property, antiques, heirlooms, a lifetime collection of books, music scores, CDs, LPs, and cassettes, and rare harps and instruments that were made for me. I sold my piano for a fraction of what it was worth, for my cremation fund. That money was extorted by two strangers, who, in my desperation, had offered to help me, and then demanded my money in exchange for my remaining possessions, which they were holding after a hospitalization. Those few, bare necessities, now damaged and soiled, are in a closet-sized storage unit, which I can't pay for. My car, which I had kept so clean and cozy, and loved to drive, was repossessed. My last home rental became an eviction. I had nothing left, and my hope was broken.

But I persisted, and I ended up between hospitals and nursing homes. Slowly, I began to be diagnosed ...with multiple,comorbid rare diseases. Some of my other diagnoses are Postural Orthostatic Tachichardia Syndrome (POTS) Dysautonomia, Myalgic Encephalomyelitis, a Mitochondrial Disorder, Hypothyriodism, Sjogren's Syndrome with h/o Systemic Lupus Eurythematosis DX, Madelung's Deformity with Ulnar Impaction Syndrome, Ulnar Nerve Damage, Ganglion Cysts, and h/o Bilateral Carpal Tunnel Syndrome, Central Pain Syndrome / Fibromyalgia, Osteoarthritis, Cervicalgia, Coccydenia, Chronic Pain, Chronic Abdominal Pain, Joint Dislocations, Chiari 1 Malformation, Cervical Instability, Multilevel Spinal Disease (Desiccating Disc Disease, Spondylosis / Degenerative Facet Arthropathy, Cervical, Thoracic, and Lumbar Radiculopathy, Cervical Nerve Root Compression, Cervicobrachial Syndrome, Dextroscoliosis, Levoscoliosis, Kyphosis, Foraminal Stenosis, Herniated Discs, Vertebral Subluxations, Dislocated Coccyx, multiple Hemangiomas, Lipomas, and Vertebral Bulges), Chronic Venous Insufficiency, Pitting Edema, Osteopenia, Muscle Atrophy, h/o Bilateral Plantar Fasciitis, Peripheral Neuropathy, Migraine with Aura, Photophobia, Synesthesia, Hyperacusis with Subjective, Objective, and Pulsatar Tinnitus, IgG Subclass Deficiency, IgG Deficiency, Hypogammaglobulinema, Chronic Rhinitis and Sinusitis, chronic Upper Resperatory Infections with h/o Bronchitis, Pneumonia, Pleurisy, and Bilateral Lower Lobe Atelectasis, a Mast Cell Disorder, chronic Elevated Histamine, Hidradenitis Suppurativa, chronic Urinary Tract Infections, Dehydration, Dry Eye Syndrome, Keratoconus, Recurrent Bilateral Corneal Erosions, Dry Mouth, Elevated CRP, Iron Deficiency Anemia, Protein Malabsorption, Vitamin D Deficiency, Gastro-esophageal Reflux Disease, Gastritis, Inflamatory Bowel Disease (initial DX Ulcerative Colitis removed; now unDXed), chronic Nausea, Abdominal Distention, Dysmotility, Gastroparesis, Hiatal Hernia, Decompressed Colon, Prolapse, Abnormal Weight Gain, Urinary Incontinence, Fecal Incontenence, Nonalcoholic Fatty Liver Disease, Ovarian Cysts, and Uterine Fibroid Tumor. I had to start adding attachments to my medical ID bracelet. I was finally diagnosed with so many, rare conditions, with still unanswered questions, that most doctors now will not accept me as a patient because my case is too difficult. But there was one, early diagnosis that could have tied everything together, which no one had investigated, “Connective Tissue Disorder”:


Then, in 2018, I was given a diagnostic checklist for a rare, connective-tissue disease, Ehlers-Danlos Syndrome. I took it to a rheumatologist, who wrote an order for genetic testing. It matched me perfectly. It made every problem I've ever had make sense, and all of my current medical conditions are comorbid with this, one disease. Other specialists agreed, and a rheumatologist confirmed EDS Type 3, Hypermobile Type, this November. But my diagnosis has remained “Ehlers-Danlos Syndrome Unspecified” as all doctors wanted me to be diagnosed by a geneticist to confirm the diagnosis and my type. This is particularly important because, while it is more likely that I have EDS Type 1, Classical, I have characteristics of EDS Type 4, Vascular, which is fatal. But genetic testing for EDS is also rare. Specializing geneticists are difficult to find, difficult to pay for, and wait-lists are long. My first appointment with a genetic counselor was finally on March 25, 2020, but after a long battle with my Medicaid managed health plan for payment, a two-year wait, and my first meeting with the geneticist, her office never authorized the exome tests that she ordered, and the geneticist retired in the meantime. Today, I am still waiting to be tested for my Ehlers-Danlos Syndrome type.

MY LIFE NOW:
I am now in a nursing home, and my hope is waning. My life in hospitals and nursing homes has been soul-crushing and hopeless. The life I needed so desperately is gone, suspended for years, while I keep fighting for medical help. I don't receive the care that I need in a nursing facility, but I also live in constant fear that I will be discharged, while I can't care for myself and my home and savings are lost. My life is in a hospital bed. I can only sit up for short periods of time, I can't shower or dress more than once or twice per week, and I have to use a power wheelchair when I'm not in bed. I have to use medical transportation to go anywhere, which is almost exclusively doctors' appointments. I haven't played the piano for a year, and I'm too weak to sing.

I still struggle for correct medical care, and I am still disbelieved, despite years of medical documentation. Doctors still will not accept me as a patient because of the time and difficulty to manage my case. Most specialists are not aware of or educated about many of my rare conditions, don't know how to treat me, and find my undiagnosed symptoms too complex, so I am referred out to other, tertiary specialists that my insurance will not pay for. I can't be seen at a Mayo and other specialty clinics, because the total cost of stay is impossible, and because I would be displaced from nursing care. After displacement, I am very difficult to place into any other, Medicaid-covered nursing home, and I can't pay for a nursing home myself, certainly not one appropriate for my needs.

Meanwhile, in the past three years, I also have lost almost all of my teeth, due to Sjogren's Syndrome, and due to a nursing facility that prevented me from obtaining oral surgery in time. Now, I am in dentures...and I'm allergic to them. I need dental implants, but insurance will not cover them, and time is running out, because the steroids I must take for Addison's Disease are causing rapid degeneration of my jaw bones. Even if I had to stay in dentures, insurance would not cover an alternate material, and insurance will not cover the extra realigns that I will always need because of my bone degeneration. I need a major surgery on my left wrist, to resolve damage due to my Madelung's Deformity, repeated dislocations, and acute trauma caused by a hospital and EMT in 2018. My old imaging is being reviewed, and I have new imaging orders for Occult Tethered Cord, Intracranial Hypertension, and CSF leaks, common comorbidities with EDS, and I need new imaging for Craniocervical Instability, neuro- and spinal surgeries, and new surgeries for my right wrist after an ECU tendon tear caused by a hospital. Insurance won't cover many of my medications (especially if they are natural alternatives). I must use a disability-accessible laptop computer and internet access for basic, daily functioning with my disease, including communication when I am unable to speak, but these are not covered by Medicaid insurance. I have huge, defaulted medical bills, student loans, eviction debt, and destroyed credit. Insurance won't pay for some of my prescription medical equipment. And my electric wheelchair is broken, and needs emergency repair or replacement, plus all the custom parts ordered by doctors for my spine and edema, but insurance has been fighting me since 2016. I can't pay for any of the urgent help that I need.

MY GOALS:
I desperately need to be back in a home of my own. My first step is to solve my most urgent medical problems. This will take funding for all of the testing, specialists, surgeries, and other needs that insurance won't pay for: This includes rare neurosurgeries that are only done by a handful of neurosurgeons in the United States, and will include travel, hospital and hotel stay with a medical attendant, surgery costs, and surgery follow-ups. Then, I must establish a stable medical team, including multiple specialists, that can manage my ongoing care. This will need ongoing funding, which will go into a Special Needs Trust account and an ABLE account, which will allow me to pay for medical expenses without preventing or losing Social Security benefits. Meanwhile, I must rebuild my life: I must gather some basic funding to reenter a home and be functional at my new normal, before I have SSI. This will allow me to place my name on waiting lists for disability housing, and to seek low-cost, private housing that is better for my total needs. I must apply for HUD and FEMA grants that could provide me with first-and-last months' rent and deposit to enter a home, but I may not receive this aid. I also will have to pay back-due debt before I can have utilities, including gas & electric and internet. And now, in order to live in a home with my level of disability, I also need extensive disability aid, such as in-home nursing care, accessible appliances, and medical equipment, which now includes a wheelchair van for transportation.

WHY I NEED YOUR HELP:
I am desperate. As this fundraiser began, I had 30 cents left.  $0.30. And basic expenses continue. I can't buy soap or other, basic needs without help. I've had to close my PO box and open a General Delivery account, but this has resulted in USPS not forwarding my mail for over two years. My small storage unit is constantly past-due, in danger of being closed for non-payment, so my very personal property can be sold at an auction, and my medical mail returned, including my DMV placard, urgent insurance documents, and medical supplies. My tiny storage unit has a monthly rent, and I must keep it because I can't move my essential property and disability equipment around to medical facilities with me. I have to keep a PO box because I am a crime victim, and because I don't have a permanent address when bounced between hospitals and nursing homes. I have to buy my own food and toiletries, especially oil soap and lotion for my thin, fragile skin (due to Ehlers-Danlos Syndrome), and because I am vegan with a medical diet and allergies that are not accommodated in facilities. I can't pay for clothing, like specialty support garments. I can't obtain uncovered medications or the medical care that I need, and I can't fund basic expenses to discharge from a nursing facility. I am still fighting for Social Security benefits, and I can't obtain emergency financial aid from the county. SSI benefits, which will be my total income for the rest of my life, are about $700 per month (and I'm never allowed to have more than $2,000, or I will lose SSI, without an ABLE account, which still doesn't allow more than $15,000 income per year. If disabled, my job will be poverty). But I can't receive SSI yet, because of student loans and nursing care: Until my $80,000 in student debt is discharged due to total disability, I can't receive government aid, or that aid is used to pay for my loans, instead of for medical and living expenses. And, if I begin receiving SSI while in a nursing home, under Medicaid, my SSI would be used to pay the nursing facility, instead of my expenses, so I would never have income to discharge from a facility. I would be stuck in a nursing home forever, if I am lucky enough to stay, with no income...and no hope. And with no ability to pay for even basic, life expenses, I now have thousands of dollars in past-due medical bills, I need thousands of dollars to pay for the urgent medical care I need now, and I must fund my ongoing medical care.

PLEASE HELP:
(1) to pay for basic, emergency, medical and living expenses,
(2) to pay for medical care, equipment, and thousands in overdue medical bills, and
(3) to return to a home of my own, with ongoing medical care.

WHAT YOUR DONATIONS WILL PAY FOR:
(1) Urgent, basic human needs, such as soap, food, and small bills
(2) A new complex power wheelchair, Group 4 ($48,000-50,000)
(3) Medical equipment and medications not covered by insurance
(4) Past-due medical bills and losses
(5) Current, urgent medical care, and ongoing medical care
(6) Establishment of an ABLE account and a Special Needs Trust account, for ongoing disability expenses, without preventing or losing Social Security
(7) Funds to re-enter a home of my own, at a high level of disability. A small fraction of funds will pay for basic home necessities, and the replacement of my most dire losses, such as an economical piano, books, and music. The majority of funds will pay for in-home nursing care, accessible appliances, and medical equipment, which now includes a wheelchair van ($40,000-70,000)

WHY I AM ANONYMOUS:
(1) I am a crime victim, and I am still in danger. Before I became sick, I participated in TV interviews, I had a large social-media presence, and I was very active online. I was trying to help other victims of the same crimes I had survived. But stalking and death-threats put me in danger, and I had to disappear, and apply for an identity change from my state victim program. I must now remain anonymous for my safety.
(2) Also, I am every patient. I am every rare-disease patient who is disbelieved, harmed by the medical system, who struggles for years for diagnosis and treatment, who dies early because diagnosis and treatment never came. I have learned that my story, the way I have been treated, is very common for almost all people, especially women, with rare, and autoimmune, diseases. Please donate to receive updates, where I will share articles and information about this common tragedy, and how you can prevent it.
(3) My transparency promise to you: Even though I can't share my identity, I want to share this journey with you, and I want you to share it with others. I want to spread awareness about the total devastation that rare disease can cause. I will share everything but my personal ID information with you. I am real. This is really my life. Please donate to receive updates, where I will share pictures, videos, medical documents, and more, about my rare-disease life: I keep a near-daily medical journal on my Instagram account.

OTHER WAYS TO HELP:
(1) ABLE account: Please help me open an ABLE account. Once I have a small amount, from this GoFundMe campaign, to open an ABLE account, the ABLE platform can create an event, asking donors like you to deposit directly to my ABLE account. Please look for my ABLE invitation. For information about ABLE accounts, please visit https://www.ablenrc.org/what-is-able/what-are-able-acounts/  .
(2) Use my Square app. Please donate to this GoFundMe campaign right now, and share my campaign with others. But if I know you, or we meet in person for any reason, you can also use my Square device to swipe your credit card for a direct donation. Your donation will go to the same account, and I will post your donation amount to the dollar goal for this campaign.
(3) Shop my store: www.tiny.cc/uuk7tz   My rare-disease-awareness designs are on standard merchandise, like shirts, mugs, and stickers, and I try to post discount codes for my store on my social media accounts, so that you spend less. You can help promote my campaign, look great, and spread awareness about rare diseases, by sporting some of my merchandise.
(4) Watch my social-media accounts for promotions: I sometimes have codes for accounts that can help both you and me. For example, if you join Robin Hood with my code, we both receive a free stock. My credit union and Aspiration accounts also sometimes offer cash to you and me if you open a new, free account with my referral. I usually post these promotions in my Instagram stories, with my medical journal.
(5) Please share this campaign, everywhere:

PLEASE SHARE MY CAMPAIGN:
(1) Please print several copies of the GoFundMe flier for my campaign:  https://www.gofundme.com/f/dsj4zh-hope-for-a-raredisease-patient/print . Then, post my flier at your church, your yoga studio, doctors' offices, hospitals, pharmacies, grocery stores, community boards, your school, university campus, your office, community parks, hiking trails, and everywhere you can post a flier! 
(2) Please share everywhere on social media. Share the link to my GoFundMe campaign (www.gofundme.com/hope-for-a-raredisease-patient ), using the #RareDisease hashtag, on Facebook, Twitter, Instagram, TicTok, LinkedIn, and everywhere you post and share content online. Share the logo for the campaign on Pinterest. Share my campaign video on YouTube, and anywhere you can link or upload a video: https://www.youtube.com/channel/UCIqigOzqkTHAerHAD5t0JQA . Share with gaming communities by using the chat features on apps like Words with Friends. Use your email marketing lists. Post, share, link, hashtag, and send anywhere you spend time online.
(3) Ask people to donate and share, online and in person.

STAY IN TOUCH:
Please share my journey with me, and with others. When you donate, I will post regular updates, including pictures, videos, and medical results. I will also share educational information about rare diseases with you. For example, doctors, nurses, and social workers, you can earn two, free hours of CME/CE credit for watching a new documentary about one of my comorbid conditions, ME/CFS (www.unrest.film/cme). Please donate for updates with more information like this. You can also stay connected by following my journey:

Instagram: @rarediseasepatient
Twitter: @rarepatient
Facebook: @RareDisease Patient
YouTube: @Rare Disease Patient

Can you please donate today? No amount is too small. Everything helps.

With sincere thanks,
#RareDisease Patient