The Spoonbook
Track it. Get it. Own it.
Spoons are data. You are more. ๐Ÿค
๐Ÿฅ„
Today's Spoonbook Wisdom
Spoon Meter โ€” How many spoons do you have today?
Tap a spoon to set your count for today.
๐ŸŒก๏ธ
The Escalating Existential Scale
How are you, really?
๐Ÿ˜ฃ
Pain Scale โ€” Wong Baker Faces
What's your pain level right now?
๐Ÿ”ฅ
Flare?
Is your body in active flare today?
๐Ÿ”ฅ Yes โ€” Active Flare
โœ“ No Flare
๐Ÿซ
Wearing Oxygen?
Are you on supplemental Oโ‚‚ today?
๐Ÿซ Yes โ€” On Oโ‚‚
โœ“ Not Today
๐Ÿ“ Loading local weatherโ€ฆ
๐Ÿ“Š
Body Info
Vitals grouped by system โ€” fill in what you have.
๐ŸŒ™ Sleep
Hours Slept
Sleep Score
Sleep Quality
๐Ÿ˜ด
๐Ÿ˜Š
๐Ÿ˜
๐Ÿ˜•
๐Ÿ˜ฉ
๐Ÿšซ
๐Ÿ˜ฎโ€๐Ÿ’จ CPAP
CPAP Hours
CPAP Score
๐Ÿซ Oxygen
SpOโ‚‚ is now auto-filled from the O2 Monitor upload below โ€” no manual entry needed here.
โค๏ธ Heart
Blood Pressure
/
HRV Avg (ms)
โš–๏ธ Body
Weight (lbs)
๐Ÿ’ญ Mood
๐ŸŒˆ Joyful
๐Ÿ˜Š Happy
๐Ÿ™‚ Content
๐Ÿ˜Œ Calm
๐Ÿ˜ Neutral
๐Ÿ˜• Frustrated
๐Ÿ˜ž Down
๐Ÿ˜ข Overwhelmed
๐Ÿ˜ซ Despair Goblin
๐Ÿ–• Fuck Everything
๐Ÿ’Š
Medications Taken Today
PRN and as-needed meds used today.
Zepbound
Cimzia
Tylenol
Muscle Relaxer
Tramadol
Tums
Zofran
๐Ÿ“‹
Symptoms
What's showing up today?
Balance Issues
Breathlessness
Burning Eyes
Congestion
Difficulty Hearing
Eye Pain
Facial Swelling
Fatigue
Headache
Joint Pain
Left Ear
Mobility
Muscle Pain
Nausea
Nose
Pre-Syncope
Rib Pain
Right Ear
Sensitive Skin
Sleep Issues
Sternum Pain
Stiffness
Syncope
Tinnitus
๐ŸŒฟ
Therapy
What supported your body today?
Aromatherapy
Bath
CBT
Cold Therapy
Compression
CPAP Worn
Cryotherapy
Heat
Infrared Sauna
Journaling
Massage
Meditation
Physical Therapy
Temazcal
๐Ÿฆฏ Assistive Devices Used Today
Air Cast
Boot
Cane
Grabber
Knee Scooter
Walker
Wheelchair
๐Ÿ”
Factors
What might be impacting you today?
Alcohol
Day Off
Emotional Stress
House Cleaning
Late Bedtime
Poor Sleep
Shopping
Shower
Social
Travel
Trouble Falling Asleep
Trouble Staying Asleep
Vivid Dreams
Woke Early
Woke Tired
Yard Work
๐Ÿซ
O2 Monitor
Upload a CSV from your pulse oximeter โ€” any time of day. Auto-fills SpOโ‚‚ and adds this session's trend to your analysis. Upload as many sessions as you like for the same day (overnight, naps, daytime activity).
๐Ÿ“ˆ

Tap to choose a CSV file
Time, Oxygen Level, Pulse Rate columns

โšก
Activity
Movement wins โ€” big or tiny.
5k Steps
10k Steps
Peloton
Pilates
Stretching
Yoga
๐Ÿ“†
Day Summary
The quick-add wrap-up โ€” intake and how it all added up.
Overall, how was today?
๐Ÿ˜„Great
๐Ÿ™‚Good
๐Ÿ˜Okay
๐Ÿ˜•Rough
๐Ÿ˜ฉTerrible
๐Ÿฅค Intake
Cups of Caffeine
Water (oz)
Alcoholic Drinks
Calories
๐Ÿ‘Ÿ Movement
Steps
๐Ÿ— Protein Goal
Did you get more than 75g of protein today?
โœ“ Yes, 75g+
โ€” Under 75g
๐Ÿ“ท
Photos
Document swelling, rashes, or anything visual.
๐Ÿ“ท

Tap to add photos ยท JPG or PNG

โœ๏ธ
Today's Notes
Anything on your mind? Write freely.
๐Ÿค– AI Analysis Tools
Past Entries
No entries yet.

The Escalating Existential Scale

Honest self-assessment is the whole point. Use your spoons wisely. ๐Ÿฅ„

1
๐ŸŒˆ Utopia
I could conquer the world today.
โ–พ
What This Means
  • This almost never happens โ€” honor it completely
  • Your body is giving you a gift today
Do This
  • Do the thing you've been wanting to do โ€” adventure, spontaneity, a project, a plan
  • Go outside, move your body in a way that feels joyful
  • Connect with someone you love
  • Don't waste it on errands or obligation
Gentle Reminder
  • Pace yourself โ€” a 1 today doesn't have to mean a 7 tomorrow
  • Hydrate. Eat well. Sleep on time.
2
โœจ Sparkly
Feeling surprisingly human.
โ–พ
What This Means
  • Better than your baseline โ€” energy is present, body is cooperating
  • A genuinely good day worth leaning into
Do This
  • Take yourself out โ€” somewhere you enjoy, not just somewhere useful
  • Start a project or pick up one you've been avoiding
  • Move your body โ€” Pilates, a walk, yoga, Peloton
  • Connect socially if it feels good
Therapies That Fit
  • Physical activity ยท Journaling ยท Time outside ยท Meditation
3
๐Ÿ˜Š Doing Okay
I'll take it.
โ–พ
What This Means
  • Functional and relatively comfortable โ€” this is a good day by your standards
  • Symptoms are present but manageable
Do This
  • Normal activities are fair game โ€” listen to what sounds appealing
  • Stretching or gentle movement is a good investment
  • Nourish well: real meals, hydration, your supplements
  • Enjoy something small โ€” tea, a book, a show you love
Therapies That Fit
  • Stretching ยท Yoga ยท Bath ยท Aromatherapy ยท Journaling
4
๐Ÿ˜ Meh
Functional-ish.
โ–พ
What This Means
  • Getting through it โ€” not thriving, not crashing
  • Pain and fatigue are present but not dominant
  • You can probably do things, just not enthusiastically
Do This
  • Keep commitments that are low-effort; give yourself permission to drop the rest
  • Prioritize comfort: warm blanket, favorite tea, easy food
  • Gentle movement if the body is willing โ€” don't force it
  • Early bedtime is a valid choice โ€” don't fight the need for rest
Therapies That Fit
  • Heating pad or ice ยท Compression ยท Calm music ยท Comfort TV
Watch
  • If Meh becomes a pattern for several days, it may signal a building flare
5
โ˜• Running on Caffeine & Hope
Pushing through on fumes.
โ–พ
What This Means
  • You're managing but it's costing you โ€” energy is borrowed, not earned
  • Pain and fatigue are significant; concentration may be difficult
Do This
  • Reduce obligations โ€” cancel or postpone anything non-essential
  • Don't rely on caffeine to mask the need for rest
  • Hydrate and eat even if appetite is low
  • Check in with your body: what specifically hurts? Where?
  • Consider PRN medications if pain is spiking
Therapies That Fit
  • Rest ยท Heating pad ยท Weighted blanket ยท Guided meditation ยท Warm shower
Watch
  • This level often precedes a flare โ€” pay attention to trends
  • Check SpOโ‚‚ if breathlessness increases
6
๐Ÿซ  Questionable Choices
The day is making decisions for me.
โ–พ
What This Means
  • Significantly unwell โ€” symptoms are loud and in charge
  • Cognitive fog, pain, and fatigue are all competing for attention
  • Normal tasks feel unreasonable
Do This
  • Cancel plans without guilt โ€” this is not optional rest, it's necessary
  • Take your PRN meds: Tramadol for pain, Zofran for nausea, Lasix if swelling
  • Soft food, warm liquids, small amounts
  • Don't push through โ€” resting now costs less than crashing later
Environment
  • Dim lights ยท Quiet space ยท Comfortable temperature ยท Weighted blanket
Therapies That Fit
  • TENS unit ยท Epsom salt bath ยท Progressive muscle relaxation ยท White noise ยท Heat or ice
Watch
  • Monitor SpOโ‚‚ โ€” get on Oโ‚‚ if dropping
  • Note if this is a new flare pattern or worsening of existing symptoms
7
๐ŸŒง๏ธ The Wheels Are Wobbling
Holding it together but barely.
โ–พ
What This Means
  • Active flare territory โ€” body is in protest mode
  • Pain is severe, fatigue is profound, multiple systems may be involved
  • This is real. It is not an overreaction.
Do This
  • Full rest โ€” bed or couch only
  • Oโ‚‚ on if SpOโ‚‚ is dropping or breathlessness increases
  • PRN medications: Tramadol, Zofran, Lasix + Potassium if swelling
  • Bland food only: broth, crackers, toast
  • Small frequent sips of water
  • Ask for help โ€” this is not the day to do it alone
Environment
  • Quiet room ยท Soft lighting ยท Light touch only โ€” no pressure on inflamed areas
Therapies That Fit
  • Heating pad or ice (ask what helps) ยท Neck massager ยท Magnesium lotion ยท Box breathing
Watch
  • Check SpOโ‚‚ every few hours
  • Monitor for signs of infection: fever, spreading redness, unusual pain
  • If symptoms worsen toward an 8 or 9 โ€” consider contacting your care team
8
๐Ÿšจ Dumpster Fire
Everything is on fire and I am in the fire.
โ–พ
What This Means
  • Severe flare โ€” body is in crisis mode
  • Multiple systems may be involved simultaneously
  • You should not be alone right now
Do This
  • Contact someone โ€” your husband, a friend, your care team
  • Oโ‚‚ on immediately if any breathlessness or SpOโ‚‚ concern
  • All PRN medications as appropriate
  • Nothing by mouth except water and bland food if tolerated
  • Lie down in your most comfortable position
  • Consider calling your rheumatologist or care team today
Environment
  • Full quiet ยท No obligations ยท Absolute minimal stimulation
ER Warning Signs at This Level
  • SpOโ‚‚ below 88% not responding to Oโ‚‚
  • HR in 50s or BP in 80s
  • Throat swelling or difficulty swallowing
  • Fever over 103ยฐF
  • Chest pain with shortness of breath
9
๐Ÿ’€ Absolute Clusterfuck
My body has fully betrayed me.
โ–พ
What This Means
  • You are in serious distress โ€” this is a medical situation
  • Someone else needs to be making decisions right now
Do This โ€” Right Now
  • Call someone immediately โ€” you should not be managing this alone
  • Oโ‚‚ on now, no question
  • Lie still, stay warm, do not exert yourself
  • Strongly consider going to the ER or calling your care team urgently
Tell the ER
  • Relapsing Polychondritis + Seronegative RA โ€” systemic autoimmune
  • Immunosuppressed: Cellcept, Prednisone, Cimzia
  • Allergies: Ancef, Vancomycin, Compazine, Adhesive Tape, CHG
  • Home Oโ‚‚ patient, tunneled port, bilateral hip replacements, cervical disc prosthetics
  • History of sepsis (2017) and anaphylactoid reaction to anesthesia
10
๐Ÿ–• Fuck
This is a medical emergency.
โ–พ
Stop. Call 911 or go to the ER now.
  • You have reached the limit of what can be managed at home
  • Do not wait. Do not minimize. Do not drive yourself.
Call 911 If Any of These Are Present
  • SpOโ‚‚ below 88% not improving on oxygen
  • HR in 50s or BP in 80s โ€” call 911
  • Chest pain with shortness of breath
  • Confusion, inability to speak or communicate clearly
  • Throat swelling or severe difficulty swallowing
  • Loss of consciousness or near-fainting
  • Fever over 103ยฐF with low BP or confusion
Tell Every Provider โ€” Every Time
  • ๐Ÿšซ ALLERGIES: Ancef ยท Vancomycin ยท Compazine ยท Adhesive Tape ยท CHG
  • Immunosuppressed: Cellcept + Prednisone + Cimzia
  • Tunneled port ยท Home Oโ‚‚ ยท Bilateral hip replacements ยท Cervical disc prosthetics C5โ€“C7
  • Severe anesthesia reaction: blistering rash โ€” flag before any procedure
  • Relapsing Polychondritis + Seronegative RA
You Are Not Overreacting
  • A 10 is real. You have a complex, serious medical history.
  • You know your body. Trust it.

โšก Emergency Reference

When in doubt, always call 911. Do not wait.

CALL 911

โ›” Drug Allergies โ€” Tell Every Provider

AncefVancomycinCompazineAdhesive TapeCHG

๐Ÿซ Breathing / Oโ‚‚

โค๏ธ Heart / BP

๐Ÿง  Neurological

๐Ÿฆด Fracture / Fall

๐Ÿฆ  Infection / Sepsis

๐Ÿฅ At the Hospital โ€” Always Say

Medications

PRN = as needed. Never skip scheduled meds. Note time if a dose is missed.

Allergies: Ancef ยท Vancomycin ยท Compazine ยท Adhesive Tape ยท CHG โ€” always report to any provider.
๐ŸŒ… Morning
Synthroid (Levothyroxine) 75mcg
1 pill ยท Empty stomach, 30 min before food ยท Thyroid
โœ” Do not hold
Morning
Prilosec (Omeprazole) 40mg
1 capsule ยท Before eating ยท Stomach protection
โœ” Do not hold
Morning
Metoprolol ER 50mg
1 pill ยท With or after food ยท Heart rate
โš  HOLD if HR < 60
Morning
Losartan (Losatrin) 50mg
1 pill ยท Blood pressure
โš  HOLD if SBP < 100 or DBP < 60
Morning
Spironolactone 25mg
1 pill ยท Fluid / blood pressure
โš  HOLD if low BP, GI upset, or dehydration
Morning
Cellcept (Mycophenolate) 3g
3 pills ยท With food ยท Immunosuppressant
๐Ÿ”’ HOLD only after Rheumatology consult
Morning
Prednisone (variable dose)
With food ยท Steroid โ€” never stop abruptly
โœ” Do not hold
Morning
Celebrex 200mg
1 capsule ยท With food ยท Anti-inflammatory
โš  HOLD if GI upset
Morning
Tegretol (Carbamazepine) 200mg
1 pill ยท With food ยท Nerve pain
โœ” Do not hold
Morning
Colchicine 0.6mg
1 pill normally ยท May increase to 2 with severe joint pain ยท Inflammation
โœ” Do not hold
Morning
Estradiol gel 1mg
Apply to skin ยท Hormone replacement
โœ” Do not hold
Morning
Xiidra eye drops
Both eyes ยท Dry eye ยท Also evening dose
โœ” Do not hold
Morning
Naltrexone (LDN) 3mg
1 pill ยท Immune modulation
โœ” Do not hold
Morning
๐ŸŒ…๐ŸŒ™ Morning & Night
Lyrica (Pregabalin) 200mg
1 capsule ยท Three times daily โ€” morning, afternoon, night ยท Nerve pain
โœ” Do not hold
3ร— Daily
Celebrex 200mg (evening dose)
1 capsule ยท With food
โš  HOLD if GI upset
Evening
Cellcept 3g (evening dose)
3 pills ยท With food
๐Ÿ”’ HOLD only after Rheumatology consult
Evening
Tegretol 200mg (evening dose)
1 pill ยท With food
โœ” Do not hold
Evening
๐ŸŒ™ Nightly
Ambien 10mg
1 pill ยท Bedtime only โ€” be ready to sleep ยท Sleep
โš  HOLD if already very lethargic
Nightly
Duloxetine (Cymbalta) 60mg
1 capsule ยท Pain & mood
โœ” Do not hold
Nightly
Singulair (Montelukast) 10mg
1 pill ยท Airway inflammation
โœ” Do not hold
Nightly
Lipitor (Atorvastatin) 20mg
1 pill ยท Cholesterol
โš  HOLD if GI upset
Nightly
๐Ÿ“… Other Schedule
Cimzia (Certolizumab) 400mg
2 injections ยท Every other Friday morning ยท Biologic RP/RA
๐Ÿ”’ HOLD only after Rheumatology consult
Every Other Fri
Reclast (Zoledronic acid)
IV infusion ยท Every 2 years ยท Bone density โ€” provider administered
โœ” Provider scheduled
Every 2 Yrs
๐Ÿ”” As Needed (PRN)
Zofran (Ondansetron) 4mg
1 pill ยท Every 6 hrs ยท Nausea โ€” offer proactively if vomiting
โœ” Give when needed
PRN
Tramadol 50mg
1โ€“2 pills ยท Every 6 hrs ยท Pain
โš  Hold if very sedated or Ambien taken recently
PRN
Lasix (Furosemide) 20mg
1 pill ยท Swelling in feet OR trouble breathing
โš  ALWAYS give Potassium 20mg at same time
PRN
Potassium 20mg
Give every time Lasix is given โ€” prevents dangerous deficiency
โš  Always pair with Lasix
With Lasix
Valtrex (Valacyclovir) 3mg
Antiviral ยท Shingles or herpes outbreak
โœ” Give when needed
PRN
Fluocinolone Acetonide Ear Drops
Ear pain or inflammation
โœ” Apply when needed
PRN
Mupirocin 2% ointment
Topical antibiotic ยท Skin or nasal (MRSA history)
โœ” Apply when needed
PRN
Hydrocortisone 2.5% cream
Twice daily to any skin rash or lesion until resolved
โœ” Apply as directed
PRN
๐ŸŒ™ Supplements โ€” Nightly
Ashwagandha 4500mg
Nightly ยท Adaptogen / stress support
Supplement
Black Cohosh 700mg
Nightly ยท Hormonal support
Supplement
Boswellia 5000mg
Nightly ยท Anti-inflammatory
Supplement
Calcium 1200mg
Nightly ยท Bone support
Supplement
COQ-10 200mg
Nightly ยท Mitochondrial / cardiovascular support
Supplement
L-Theanine 400mg
Nightly ยท Calm / sleep support
Supplement
Magnesium Glycinate 120mg
Nightly ยท Muscle relaxation / sleep support
Supplement
Melatonin 20mg
Nightly ยท Sleep regulation
Supplement
Milk Thistle
Nightly ยท Liver support (especially with meds)
Supplement
Multivitamin
Nightly ยท General nutritional support
Supplement
NAD+ 1100mg
2 capsules nightly ยท Cellular energy / mitochondrial support
Supplement
Omega-3 1125/875mg
Nightly ยท Anti-inflammatory / cardiovascular support
Supplement
Probiotic
Nightly ยท Gut health (especially with immunosuppressants)
Supplement
Turmeric Curcumin 2250/500mg
Nightly ยท Anti-inflammatory
Supplement
Vitamin D3 & K2 4000IU/100mg
Nightly ยท Bone density / immune support
Supplement
โŒ Failed Rheumatologic Medications
These medications were trialed and discontinued due to inadequate response or adverse effects. For reference only โ€” do not re-administer without specialist direction.
Plaquenil (Hydroxychloroquine)
Discontinued ยท Inadequate response
Failed
Humira (Adalimumab)
Discontinued ยท Inadequate response
Failed
Infliximab (Inflectra)
Discontinued ยท Inadequate response
Failed
Actemra (Tocilizumab)
Discontinued ยท Inadequate response
Failed
Simponi (Golimumab)
Discontinued ยท Inadequate response
Failed
Methotrexate (MTX)
Discontinued ยท Inadequate response
Failed
Rinvoq (Upadacitinib)
Discontinued ยท Inadequate response
Failed

Conditions & History

Tap each to expand. Conditions are alphabetical.

Acute Venous InsufficiencyVascular
Impaired blood return from the legs causing swelling, edema, and discomfort. Can cause 4+ pitting edema to the knee. Managed with Lasix PRN, compression, and leg elevation. Had left leg venous laser ablation with chemical injection (5/2023).
Bilateral Hip ReplacementsSurgical
Left hip Nov 2017, right hip Feb 2018. Both prosthetics must be disclosed to any surgical team. Cervical disc prosthetics C5โ€“C7 (April 2024) also present. Never allow CHG skin prep without flagging allergies first.
Cervical Cancer โ€” In Situ (Resolved)Oncology
Diagnosed 2021. CIN4 graded with clean margins following LEEP procedure. Resolved. Hysterectomy/oophorectomy performed January 2023 for related and additional indications. No active cancer.
Chronic Hypoxia / Home Oโ‚‚Pulmonary
Oxygen levels drop below normal, especially with activity. Home oxygen started April 2024 after acute hypoxia (SpOโ‚‚ in 70s) post-surgery. Six-minute walk test showed SpOโ‚‚ at 89%. PFT abnormal (2023). If lips or fingernails look blue, get on Oโ‚‚ immediately and call 911 if not improving.
Complex Pain Syndrome & NeuropathyPain
Neuropathic pain with areas of numbness and loss of sensation throughout the body. Burning, stabbing, aching, and numbness can occur simultaneously. The pain is real and often severe โ€” the Existential Scale in this app reflects her actual experience, not exaggeration.
HyperlipidemiaMetabolic
Elevated blood lipids diagnosed 2016. Managed with Lipitor (Atorvastatin) 20mg nightly. Relevant in the context of cardiovascular risk alongside her cardiac history.
HypertensionCardiovascular
Managed with Losartan 50mg daily and Spironolactone 25mg daily. Hold Losartan if SBP < 100 or DBP < 60. Hold Spironolactone with low BP, GI upset, or dehydration.
HypothyroidismEndocrine
Diagnosed 2016. Managed with Synthroid (Levothyroxine) 75mcg daily, taken on an empty stomach at least 30 minutes before food. Do not skip โ€” thyroid hormone affects virtually every system in the body.
ImmunosuppressionImmune
Cellcept, Prednisone, and Cimzia significantly suppress the immune system. Infections that would be minor for most people can escalate quickly. History of cutaneous MRSA (2022) and sepsis/SIRS (2017). Take any sign of infection โ€” fever, spreading redness, unusual wound โ€” seriously.
InsomniaSleep
Chronic difficulty with sleep onset and maintenance. Managed with Ambien 10mg nightly and a nightly supplement stack including Melatonin, Magnesium Glycinate, and L-Theanine. CPAP also used for OSA. Hold Ambien if already very lethargic.
Legg-Calvรฉ-Perthes DiseaseOrthopedic
A childhood hip condition where the femoral head loses blood supply and deteriorates. Contributed to severe bilateral hip dysplasia diagnosed in adulthood (2016) and ultimately led to bilateral total hip replacements in 2017 and 2018.
Obstructive Sleep Apnea with Oโ‚‚ & CPAPSleep / Pulmonary
Airway obstruction during sleep causing apnea episodes. CPAP started February 2024 alongside home oxygen. Both are used nightly. CPAP compliance is important โ€” it also helps with oxygen levels overnight. If CPAP is not worn, SpOโ‚‚ overnight may drop significantly.
OsteoarthritisJoint
Degenerative joint disease causing cartilage breakdown and joint pain. Occurs on top of inflammatory arthritis (RA and RP), making joint pain multifactorial. Contributes to global joint pain and mobility limitations.
Osteoporosis & Pathological FracturesBone
Bone density loss compounded by long-term steroid use. 4+ pathological fractures โ€” bones that broke without significant trauma. Both 5th metatarsals have been surgically repaired. Reclast (IV infusion every 2 years) used for treatment. DEXA scans 2023 and 2024. Always take a fall or sudden bone pain seriously.
Paroxysmal Atrial FibrillationCardiac
Cardiac ablation Feb 2022. Afib can recur โ€” watch for rapid irregular heartbeat, palpitations, dizziness, or chest discomfort. Borderline pulmonary hypertension (PHTN) on 2024 echo. Abnormal right heart catheterization with exercise (2025) showing profound decompensation. Heart is under significant structural stress.
Psoriatic ArthritisAutoimmune
Inflammatory arthritis associated with psoriasis, causing joint pain, swelling, and skin involvement. Overlaps significantly with her RA and RP diagnoses, contributing to the complexity of her systemic inflammatory picture.
Relapsing Polychondritis (RP)Autoimmune
A rare autoimmune disease where the immune system attacks cartilage throughout the body โ€” ears, nose, throat, airways, joints, and eyes. Ear swelling, throat issues, vertigo, tinnitus, and airway problems are all part of this. Flares can be triggered by illness, stress, or nothing at all. This is her primary diagnosis and drives most of her complexity. First episode 2017.
Seronegative Rheumatoid ArthritisAutoimmune
Inflammatory arthritis affecting joints throughout the body. "Seronegative" means standard blood markers are negative โ€” making it harder to get taken seriously, but it is real and significantly active. Diagnosed September 2019. Contributes to global joint pain, morning stiffness, and multiple failed biologic trials.
Steroid-Induced MyopathyMuscle
Long-term prednisone use has caused significant muscle weakness. She may tire quickly, have difficulty rising from chairs or the floor, and have less strength than she appears to have. Physical tasks that look easy may be genuinely difficult.
๐Ÿ”ช Surgical History
Left Total Hip Replacement11/2017
Uncemented prosthetic left hip replacement due to severe bilateral hip dysplasia from Legg-Calvรฉ-Perthes. Full recovery with non-weight bearing period. Prosthetic must be disclosed to all providers.
Right Total Hip Replacement2/2018
Uncemented prosthetic right hip replacement, non-weight bearing x8 weeks. Completed the bilateral hip replacement series. Unstable spot noted in right femur prosthetic in 2024 โ€” was non-weight bearing 6 weeks.
ORIF Right 5th Metatarsal6/2021
Open reduction internal fixation for displaced pathological fracture of the right 5th metatarsal. Non-weight bearing for 4 months total. First of two metatarsal surgeries.
Cardiac Ablation2/2022
Ablation procedure for paroxysmal atrial fibrillation. Afib can still recur post-ablation โ€” any palpitations, irregular heartbeat, or chest discomfort should be taken seriously.
Laparoscopic Cholecystectomy9/2022
Emergency gallbladder removal for acute cholecystitis. Followed by blistering rash cultured for MRSA post-operatively. Significant anesthesia sensitivity documented at this surgery.
ORIF Left 5th Metatarsal10/2022
Open reduction internal fixation for acute-on-chronic fracture of the left 5th metatarsal. Followed by profound blistering rash after anesthesia โ€” this is now a documented anesthesia sensitivity. Always flag before any procedure.
Hysterectomy / Oophorectomy / Sacrocolpopexy with Mesh1/2023
Complete hysterectomy with oophorectomy and pelvic floor repair with mesh. Blistering rash on abdomen post-surgery, biopsy showed allergic dermatitis. Now on estradiol gel for hormone replacement. Mesh present โ€” disclose to all providers.
Tunneled Port Placement3/2023
Tunneled central venous port placed for infusion access. Port is present and active โ€” disclose to all providers and nursing staff before any IV access attempts. Do not use peripheral IV if port is accessible and patient consents.
Left Leg Venous Laser Ablation with Chemical Injection5/2023
Laser ablation and sclerotherapy for left leg venous insufficiency. Managed ongoing edema and venous reflux. Lasix PRN continues for fluid management.
Prosthetic Disc Insertion ร—2 (C5โ€“C7)4/2024
Cervical disc replacement at C5โ€“C7 for cervical disc disease. Experienced acute hypoxia (SpOโ‚‚ in 70s) post-operatively โ€” this is when home oxygen was initiated. Prosthetic cervical discs must be disclosed to all providers, particularly before any MRI or surgical procedure.
Left 5th Metatarsal Hardware Removal with Bone Graft8/2026
Removal of hardware from prior ORIF (10/2022) with bone grafting due to non-union or hardware complication. Most recent surgical procedure. Flag anesthesia sensitivity to all providers โ€” documented history of profound blistering rash post-anesthesia. Disclose full surgical history and allergies before any intervention.

Body Systems Review

Symptoms and history organized by organ system โ€” compiled from years of review-of-systems notes. Tap each to expand.

๐Ÿ”ฌ Rheumatologic / Autoimmune Primary Dx
Diagnosed September 2019 (Relapsing Polychondritis + Seronegative RA) after recurrent ear-inflammation episodes throughout 2019. Started on Prednisone 40mg + Methotrexate. Genetic autoinflammatory workup with Dr. Beck, NYU Langone (8/2025).
Prednisone: Continuous since 2019 โ€” range 5mg (low) to 60mg (high). Currently variable dose daily.
Treatment Sequence
2019MTX (Methotrexate) started with Prednisone at diagnosis
3/2020Plaquenil started โ†’ stopped 7/2020
7/2020Humira started โ†’ stopped 1/2021
1/2021Inflectra/Infliximab โ†’ increased 10/2021 โ†’ stopped 10/2023
10/2023Actemra started โ†’ stopped 2/2024
2/2024Simponi started โ†’ Rinvoq trialed ยท MTX stopped ยท Cellcept started
2025Cimzia 200mg added
2026Cimzia increased to 400mg (2 injections every other Friday)
CurrentCellcept 3g + Cimzia 400mg + Prednisone (variable)
๐Ÿง  Neurological Chronic
Brain fog, fatigue, expressive aphasia, band-like headaches at the crown, right-sided icepick migraines, persistent vertigo, tinnitus, persistent left eyelid twitch. October 2020: fall with head laceration.
2024MRI head and neck: compressed C5 and C6 โ†’ cervical disc replacement (C5โ€“C7) performed 4/2024
2024โ€“25Headache trials: Qulipta (trialed, failed) ยท Nurtec (trialed, failed)
CurrentTegretol (Carbamazepine) 200mg twice daily for headache management
๐Ÿ‘๏ธ Eyes 2013โ€“present
Scleritis, left eye โ€” two episodes (2013, 2015), both treated with steroid drops. Ophthalmologist-observed right eye inflammation during the 2017 ear-swelling episode.
โš ๏ธ Ocular inflammation is a recognized feature of Relapsing Polychondritis โ€” any recurrence warrants prompt ophthalmology referral.
๐Ÿ‘‚ ENT / Cartilage Since 2017
Ear drainage, mouth ulcers, nasal ulcers, facial inflammation, intermittent throat pain and swallowing difficulty (since 8/2020), multiple episodes of laryngitis, subglottic inflammation observed.
Recurrent bilateral ear inflammation with tinnitus, drainage, vertigo, and acute hearing loss (Jan/Mar/Apr 2019) โ€” this cluster preceded the September 2019 RP/RA diagnosis. Perforated eardrum with inner/outer ear infection (11/2023). Auricular swelling and redness has been photographically tracked from 2017 through 2025 and is the hallmark presentation of her RP.
โค๏ธ Cardiovascular 2019โ€“2025
Atypical bradycardia, no murmur, chronic venous insufficiency with history of 4+ pitting edema to the knee. EF 55%.
11/2021ED: AFib, D-dimer 1300, CT negative for PE
2/2022Cardiac ablation for paroxysmal AFib
2024Echo: borderline pulmonary hypertension
1/2025Right heart cath: PHTN with profound decompensation on exercise โ€” retesting at altitude recommended
2/2025ED: HR 60s, BP 80s โ€” sepsis ruled out, restarted Oโ‚‚
2025MRI, CT, and V/Q scan: possible pulmonary hemorrhage vs. obstruction of left superior pulmonary vein ยท Significant left V/Q mismatch identified
5/2026Repeat right heart cath: pulmonary vein obstruction ruled out ยท EF 55%
๐Ÿซ Pulmonary 2023โ€“present
Persistent worsening shortness of breath, transient upper-airway expiratory wheeze, intermittent SpOโ‚‚ drops, intermittent hypoxia requiring supplemental Oโ‚‚.
2023PFT abnormal ยท Dynamic CT normal ยท Bronchoscopy normal
2024Dynamic CT normal ยท Post-surgical acute hypoxia (SpOโ‚‚ in 70s) โ†’ home Oโ‚‚ initiated
6/20246-minute walk test: SpOโ‚‚ 89% at UPenn
3/2025PFT normalized
11/2025Extensive cardiopulmonary workup: left V/Q mismatch (no PE) ยท Exercise tolerance testing showed early anaerobic threshold with no Oโ‚‚ recruitment โ€” mechanism of dyspnea remains under investigation
๐Ÿฝ๏ธ GI / Hepatic 2022
Increased liver enzymes, intermittent nausea. Acute cholecystitis requiring laparoscopic cholecystectomy (9/2022). Liver enzymes and nausea continue as recurring concerns in the context of her medication burden โ€” Cellcept, Prednisone, and a large supplement stack all carry hepatic considerations.
๐Ÿฉธ Genitourinary / Renal Ongoing
Elevated BUN & creatinine, symptomatic UTIs occurring with disease flares. Bladder suspension with mesh performed alongside the January 2023 hysterectomy/sacrocolpopexy. Ultrasound showed ureteral scarring โ€” ongoing monitoring warranted.
๐ŸŒธ Gynecologic 2021โ€“2023
P3G2. Abnormal Pap + HPV (2021) โ†’ five cervical biopsies + LEEP โ†’ CIN4 with clean margins โ†’ IUD placed for hormone control. Hysterectomy with bilateral oophorectomy and mesh sacrocolpopexy (1/2023) โ€” now surgically menopausal, managed with estradiol gel 1mg daily.
๐Ÿฆด Musculoskeletal 4 path. fractures
Significant global joint pain โ€” frequent use of assistive devices (cane, wheelchair, electric scooter). Bilateral hip dysplasia (Legg-Calvรฉ-Perthes) โ†’ bilateral total hip replacements (11/2017, 2/2018).
Four pathological metatarsal fractures (5th ร—2, 3rd, 4th โ€” 2021 through 2025), each requiring surgical fixation. Left rib fracture (2025). DEXA normal 2023 and 2024, maintained on Reclast. Unstable right femoral prosthetic noted 2/2024 โ€” six weeks non-weight-bearing.
๐Ÿฉน Dermatologic / Immune Since 2009
Frequent skin rashes since 2009, increased sensitivity to chemicals. Papular rash (2010, trunk/thighs, lasted 1+ year โ€” cultures and IgG/IgM negative, CRP positive).
โš ๏ธ Documented anesthesia sensitivity: profound blistering rash after multiple surgeries (2022โ€“2024). Biopsy-confirmed allergic dermatitis (2023). Cutaneous MRSA (2022). Stage 3 pressure wound, right heel (9/2020). Cleaning-solution skin reaction (2024).
โš–๏ธ Endocrine / Metabolic Weight trend
Hypothyroidism and hyperlipidemia both diagnosed 2016 (managed with Synthroid and Lipitor).
Weight Trend
122
2019
โ†’
147
2020
โ†’
180
2021
โ†’
217
2023
โ†’
223
2024
โ†’
180
2025
The 2024โ†’2025 drop from 223 to 180 lbs is notable โ€” worth discussing with your care team in the context of concurrent cardiopulmonary workup.
๐Ÿ“ Pain Distribution Body map
Widespread pain mapped across face/jaw, neck, chest/sternum, lower back and sacrum, bilateral hips/groin, hands, and feet โ€” with numbness noted bilaterally at hands and feet.
๐Ÿ”ฅ BurningLimbs, lower back, feet
๐Ÿซ€ AchingFace, hands, feet
โšก StabbingHip / groin
๐Ÿค PinchingChest, upper back
๐Ÿ”ช SharpFeet
ใ€ฐ๏ธ NumbnessHands & feet bilaterally
Pattern consistent with overlapping seronegative RA, osteoarthritis, and steroid-related neuropathic pain.

Photo Gallery ๐Ÿ“ท

All journal photos in one place. Add historical photos anytime โ€” date and context always recorded.

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Comfort & Cozy ๐Ÿฅ„

A menu of small things that help. Low spoons welcome. Pick one. Pick three. No wrong answers.

"Spoons are data. You are more. Every small act of self-care is a spoon well spent โ€” and you deserve every one."
๐Ÿ›‹๏ธ Body Comfort โ–พ
๐ŸŒฌ๏ธ Breathing & Nervous System โ–พ
๐Ÿต Nourishment โ–พ
๐Ÿง  Mental Reset โ–พ
๐Ÿ’› Emotional Care โ–พ
๐ŸŒฟ Environment โ–พ
๐ŸŽจ Tiny Joys โ–พ
When You're Having a Bad Day

๐Ÿ—ฃ๏ธ Words That Help

๐Ÿšซ What Doesn't Help

๐Ÿ’™ The Bigger Picture