I am realizing that one of my oldest and dearest friends is at the point where pride is needing to be set aside, and someone needs to ask for help. She has always been so self-sufficient that even convincing her to allow someone else ask for help on her behalf was like pulling teeth. She is so loved, almost as loved as she is stubborn. But, can any of us blame her when this woman went from being the main breadwinner, handling the household items/tasks, cooked most meals, took care of all financial items, and made everyone’s appointments. I can’t even wrap my head around going from all that to being unable to so much as do a load of laundry, and here’s the wild part, if you ask her, she will say, “it is humbling”, not, its irritating or infuriating, but humbling. She feels broken and even still she seeks growth from this. In thanking God every day for her faith, Mike and Calliope for they are truly what keep her going spiritually. Unfortunately, it is at her parents’ significant financial detriment that she has been supported financially through the last couple of years as things have become progressively more difficult for Cassie both physically, mentally, and financially. As I have mentioned this is taking a toll on Cassie, but it has far-reaching effects on her whole family. From her mother and father struggling to keep Cassie’s treatments funded, to her husband trying his best to care for his ill wife, to her daughter constantly concerned with her mother’s health and well-being, and it trickles down to more than the family. It kills me that I can’t just give her the help that she needs. I know a lot of us around her feel this way and this is why I am here asking for any and all help for one of the strongest and most determined women I know.

For those interested in specifics, below is the most concise and current list that I could gather from her of her diagnoses, treatments, specialists, potential future procedures and mobility aids:

Items are marked with the following symbols to identify level of insurance coverage:

*denotes full coverage by insurance/no cost

#denotes partial coverage

^denotes zero or practically zero coverage/out-of-pocket OTC

?denotes unknown amount of coverage to expect

Diagnoses, Past/Present Treatments:

• Diagnosed with Scleroderma, followed by narrowing down to Systemic Sclerosis

o specialist believes it could be the rarer systemic sclerosis sine scleroderma. There is no cure, only treatment of symptoms and medical attempts to slow the progression of the disease.

• Subtype and response to treatment will determine life expectancy. Organ involvement has begun, which means that the progression has started, and treatment will need to be more aggressive than it would if I were earlier in the disease. Average life expectancy, depending on type, can average 5-15 years once organ involvement begins. Again, this depends on subtype and level of treatment success.

• Causes connective tissue tightening and hardening

• Affects respiratory system

• Affects digestive System

• Can cause renal failure

• Can cause cardiac complications

• Can cause dental issues

• Considered one of the “most deadly and miserable” autoimmune diseases (quote from specialist)

• Diagnosed with Fibromyalgia

o Co-morbidities of fibro that she has displayed but are not included below include constant joint and musculoskeletal pain, tender points throughout the body, anxiety, depression, chronic fatigue syndrome, temperature regulation issues, skin sensitivity, neuropathy or numbness/tingling in extremities, cognitive issues (also known as brain fog)

• Diagnosed with Long COVID

• Diagnosed with Essential Tremor - got worse after COVID

• Diagnosed with IBS and IBS-C

• Diagnosed with Plantar Fasciitis and Bone Spurs in 2022

• Diagnosed with Left Shoulder tear

o Currently undergoing post-surgical PT

• Diagnosed with Arthritis

• Diagnosed with Carpal Tunnel Syndrome in both hands

• Will need to have surgery to repair

• Diagnosed with PCOS (polycystic ovarian syndrome)

• Diagnosed with Endometriosis and Uterine fibroids

• Diagnosed with Restless Leg Syndrome, Insomnia and Night Anxiety

• Diagnosed with GERD

• Had procedure to stretch my esophagus to swallow solids and liquids without aspiration or choking

• Diagnosed with daily Migraines, Cluster headaches, "Icepick" headaches, and severe tension headaches

• Diagnosed with severe Vitamin D deficiency

• Diagnosed with severe bilateral TMD (TMJ)

o Can result in ER visits when jaw gets “stuck”

• Diagnosed with Spinal Stenosis and Spondylosis

• Diagnosed with SI Joint injury, and related sciatic nerve pain

• Diagnosed with nerve damage

• Diagnosed with softening of cervical spine

• Diagnosed with Spinal disc degenerations

• Diagnosed with hiatal hernia

• Diagnosed with very high inflammation levels throughout body

• Diagnosed with Raynaud’s Phenomenon

Further potential diagnoses, pending further testing

• Sjogren’s

• POTS

• Ehler’s-Danlo Syndrome

Attempted/Continuing Treatments for any or all of above:

• #Weekly low dose Chemo/immunosuppressants

• #Limited drug therapies available for Fibromyalgia –

o No success with any available Fibromyalgia-specific drug therapies

• #Drug therapy cocktails of different types of medications to treat co-morbidities with limited success

• ^Weekly or Bi-Weekly Chiropractic Adjustments including cold laser therapy

• ^TENS therapy

• #Physical Therapy/Aqua Therapy – used as many as insurance would cover a limited amount per year. Went 2-3x per week.

• ^Epsom Salt Soaks 3-5x weekly when possible

• ^Acupuncture

• ^Massage

• #Pain Psychiatrist including biofeedback/hypnosis

• #Pain Clinics

• #Nerve ablations

• #Steroid injections

• *Breathing Exercises

• ^Magnesium supplements and sprays

• ^Heat Therapy

• ^Cold Therapy

• *Rest

• #Weight medication

• #Steroids

• #Further drug therapies

• #Daily exercises to keep brain fog from getting worse

• ^Compression gloves

• #Regular colonoscopy/endoscopy check ups

• ^Diet – Strict Anti-inflammatory

• #Surgery to repair shoulder tear

• #physical therapy after surgery

• ^NSAIDs

• ^Ice/Heat

• ^Pain creams

• ^Specialized hormone therapy medication

• #Surgical procedures when needed

• ^Heating pads

• #Botox alone costs $500 every 3 months with insurance

• ?Hoping to try nerve block, but insurance will not approve without other treatments being attempted first

• #Doctor ordered repeat MRIs/CTs/Echos/Pulminary Function Tests to check for further degeneration

• #Seeing Therapist

• Both Cassie and Calliope

Upcoming Procedures, Test, Therapies, Specialists that are to be consulted

• ?Possible Hiatal repair surgery if needed in future

• ?Carpal Tunnel repair surgery

• #Continuing Physical Therapy

• #Spinal MRIs Quarterly

• #Chest CT bi-annually

• ?Headache clinic at MUSC

• ?Sleep Study

• #Monthly Checks with Rheumatologist (2 ½ hour drive each way)

• ?Specialist Dentist

• #Pain Management (2 hour drive each way)

• #Orthopedic Surgeon (2 ½ hour drive each way)

• #procedure to stretch esophagus to swallow solids and liquids without aspiration or choking as needed

• ^specialty eyedrops

• ?May need infusions in the future

• ?Bariatric Surgeon

Medical/Therapeutic Equipment used to help her function

• ^Cane

• ^Walker

• #Wheelchair

• #Shower chair

• ^Ace wraps

• ^Large/specialized Ice packs

• ^Large/Specialty Heating pads

• ^Head Ice packs

• ^Eye massager

• ^Epsom Salt

• ^TENS unit

• ^Compression stockings

• ^Compression Gloves

• ^Hand warmers

• ^Grabbers

• ?Specialized Mobility Aids for kitchen and public outings

• ^Accessibility accommodations made to house (grab bars, ramp, etc…)

Current Doctors/Specialists being seen

• Primary Care Doctor

• Gastroenterologist

• Pain Management

• Chiropractor (specializes in Fibromyalgia)

• Rheumatologist

• Sleep Doctor

• OB/GYN

• Orthopedic Surgeon

• Ophthalmologist

• Neurosurgeon

• Neurologist

• Dentist/Maxillofacial Surgeon

• Physical Therapist

• Therapist (both Calliope and Cassie)

Financial situation factors and what we are doing about it:

• Terminated from work for disability

• Re-applying for Social Security Disability after issues with previous filing– Hired a lawyer to help her file for SSD. Paid retainer.

• Applied for SNAP and Medicaid

•

In addition, Calliope needs some Occupational Therapy and Psychiatry due to testing results