Lauri's Care Playbook

A guide for her husband · Always refer to this first

How is Lauri today?

Tap her level to jump straight to care instructions.

🩺 Remember

Lauri is living with Relapsing Polychondritis and Seronegative RA — both are systemic inflammatory diseases that can flare unpredictably. When she's at a 5 or 6, she is not being dramatic. Her body is in active crisis.

💊 Allergies — Never Give These

Ancef · Vancomycin · Compazine · Adhesive Tape · CHG
Always tell any ER staff about these before treatment begins.

🫁 Oxygen

Lauri is on home O₂ supplementation. If she's looking blue, confused, or her SpO₂ drops below 88%, get her on oxygen immediately and call 911 if it doesn't improve.

Lauri's Scale

Tap each level to expand care instructions. When in doubt, go one level more serious, not less.

6
Fuck
Things are really bad. Might need a doctor.
Environment
  • Quiet environment — no loud TV, music, or talking
  • Soft lighting only, no harsh overhead lights
  • Cool or comfortable temperature, adjust as she asks
Physical Care
  • Light touch only — don't rub, squeeze or apply pressure
  • Bland food only — crackers, plain toast, broth
  • Offer water frequently in small sips
  • Make sure she has her O₂ on if she needs it
Plans & Activity
  • Cancel all plans — nothing is more important
  • Silly TV or comfort movies only, her choice
  • Don't leave her alone for long stretches
Watch For — Consider ER If
  • SpO₂ drops below 88% and O₂ isn't helping
  • HR in the 50s or BP in the 80s (see emergency tab)
  • She seems confused or can't communicate clearly
  • Severe chest pain, difficulty swallowing, or throat swelling
5
Shit
I'm feeling really bad. It's hard to rest.
Help With These
  • Draw a long bath or help her shower and wash her hair
  • Make sure she's drinking water — offer it repeatedly
  • Prepare soup, bread, and tea
Pain Management
  • Ask her if she needs ice or heat — don't assume which hurts vs. helps
  • She may need her PRN medications (Tramadol, Zofran, Lasix) — check with her
Plans
  • Cancel or go without her — no guilt, no pressure
  • She needs rest more than she needs to be a good sport
4
Damnit
Pretty crappy, but probably doing normal things.
What She Needs
  • Let her go to bed early if she needs it — don't make her justify it
  • Accept her choice to carry on if she wants to
  • She may hurt more than normal — don't compare to her good days
Emotional Support
  • Say nice things to her. Tell her you love her a lot.
  • Don't minimize — a 4 is real, even if she looks okay
3
Could be Worse
Feeling yuckier than normal.
Support Cues
  • Encourage early bedtime — don't stay up late
  • Bath time is important — help her prioritize it
  • She doesn't need a lot from other people right now — give her space
  • Allow a 5-minute whine — just listen, don't fix
2
Vibing
A good day — more energy than normal.
Make the Most of It
  • She wants to do things — take her out! (not just to Blades)
  • Support her in doing projects — she may have energy for things she's been wanting to do
  • Don't hold her back out of caution — she knows her body
1
Utopia
This never happens — but if it does, go crazy!
Rare and Beautiful
  • She feels genuinely good — celebrate it
  • Do the things she normally can't — adventure, spontaneity, fun
  • Don't waste it on errands. This is the day for living.

⚡ Emergency Reference

When in doubt, always call 911. Do not wait to see if it passes.

CALL 911

⛔ Drug Allergies — Tell Every Provider

Ancef Vancomycin Compazine Adhesive Tape CHG

🫁 Breathing / Oxygen

❤️ Heart / Blood Pressure

🧠 Neurological

🦴 Fracture / Fall

🦠 Infection / Sepsis

🏥 At the Hospital — Always Say

Medications

These are Lauri's current medications. PRN means "as needed" — she decides when to take them.

Important: Never skip or double her scheduled medications. If she can't take them (vomiting, unconscious), note the time and tell medical staff. Don't give her any new medications without checking her allergy list.
🌅 Morning
Synthroid (Levothyroxine) 75mcg
1 pill · Thyroid · Take on empty stomach, 30 min before food
✔ Do not hold
Morning
Prilosec (Omeprazole) 40mg
1 capsule · Stomach protection · Take before eating
✔ Do not hold
Morning
Metoprolol ER 50mg
1 pill · Heart rate control · Take with or after food
⚠ HOLD if HR < 60 — check pulse first. Call doctor.
Morning
Losartan (Losatrin) 50mg
1 pill · Blood pressure
⚠ HOLD if SBP < 100 or DBP < 60 — check BP first.
Morning
Spironolactone 25mg
1 pill · Fluid / blood pressure
⚠ HOLD if low BP, GI upset, or signs of dehydration
Morning
Cellcept (Mycophenolate) 3g
3 pills · Immunosuppressant · Take with food
🔒 HOLD only after conversation with Rheumatology
Morning
Prednisone (variable dose)
Dose varies · Steroid · Take with food
✔ Do not hold — never stop steroids abruptly
Morning
Celebrex 200mg
1 capsule · Anti-inflammatory · Take with food
⚠ HOLD if significant GI upset (nausea, vomiting, stomach pain)
Morning
Tegretol (Carbamazepine) 200mg
1 pill · Nerve pain · Take with food
✔ Do not hold
Morning
Colchicine 0.6mg
1 pill normally · Inflammation · May increase to 2 pills with severe joint pain
✔ Do not hold
Morning
Estradiol gel 1mg
1mg · Hormone replacement · Apply to skin daily
✔ Do not hold
Morning
Xiidra eye drops
Both eyes · Dry eye · Also give second dose in the evening
✔ Do not hold
Morning
Naltrexone (LDN) 3mg
1 pill · Immune modulation
✔ Do not hold
Morning
🌅🌙 Morning & Night
Lyrica (Pregabalin) 200mg
1 capsule · Three times daily — morning, afternoon, and night
✔ Do not hold
3x Daily
Celebrex 200mg (2nd dose)
1 capsule · Evening dose · Take with food
⚠ HOLD if significant GI upset
Evening
Cellcept (Mycophenolate) 3g (2nd dose)
3 pills · Evening dose · Take with food
🔒 HOLD only after conversation with Rheumatology
Evening
Tegretol (Carbamazepine) 200mg (2nd dose)
1 pill · Evening dose
✔ Do not hold
Evening
🌙 Nightly (at bedtime)
Ambien 10mg
1 pill · Sleep · Give at bedtime only — she should be ready to sleep
⚠ HOLD if she is already very lethargic or sedated
Nightly
Duloxetine (Cymbalta) 60mg
1 capsule · Pain & mood · Take at night
✔ Do not hold
Nightly
Singulair (Montelukast) 10mg
1 pill · Airway inflammation · Take at night
✔ Do not hold
Nightly
Lipitor (Atorvastatin) 20mg
1 pill · Cholesterol · Take at night
⚠ HOLD if significant GI upset
Nightly
📅 Other Schedule
Cimzia (Certolizumab) 400mg
2 injections (200mg each) · Every other Friday morning · Biologic for RP/RA
🔒 HOLD only after conversation with Rheumatology
Every Other Fri
Reclast (Zoledronic acid)
IV infusion · Every 2 years · Bone density — provider-administered
✔ Provider scheduled — not home-managed
Every 2 Yrs
🔔 As Needed (PRN) — She Directs These
Zofran (Ondansetron) 4mg
1 pill · Nausea · Every 6 hours as needed · Offer proactively if she is vomiting
✔ Give when she asks, or offer if she seems nauseated
PRN
Tramadol 50mg
1–2 pills · Pain · Every 6 hours as needed · Max 2 pills per dose
⚠ Hold if she is already very sedated or has taken Ambien recently
PRN
Lasix (Furosemide) 20mg
1 pill · For swelling in feet OR trouble breathing
Always give Potassium 20mg when giving Lasix — never give one without the other
PRN
Potassium 20mg
Given with Lasix only · Prevents dangerous potassium loss
Always pair with Lasix — give together every time
With Lasix
Valtrex (Valacyclovir) 3mg
As needed · Antiviral — for shingles or herpes outbreak
✔ Give when she asks
PRN
Fluocinolone Acetonide Ear Drops
As needed · For ear pain or inflammation
✔ Give when she asks
PRN
Mupirocin 2% ointment
As needed · Topical antibiotic for skin or nasal passages (MRSA history)
✔ Apply when she asks
PRN
Hydrocortisone 2.5% cream
Apply to any skin rash or lesion · Twice daily until resolved
✔ Apply as directed — twice a day to affected areas
PRN

Her Conditions

Tap each to understand what it means for day-to-day care.

Relapsing Polychondritis (RP) Autoimmune
A rare autoimmune disease where the immune system attacks cartilage throughout the body — ears, nose, throat, airways, joints, and eyes. Her ear swelling, throat issues, vertigo, 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.
Seronegative Rheumatoid Arthritis Autoimmune
Inflammatory arthritis that affects her joints throughout the body. "Seronegative" means standard blood markers are negative, which can make it harder to get taken seriously — but it's real. Contributes to her global joint pain and morning stiffness.
Complex Pain Syndrome & Neuropathy Pain
She has neuropathic pain with areas of numbness. Her pain is real and often severe — the scale on this app reflects her actual experience, not exaggeration. Burning, stabbing, aching, and numbness can occur throughout her body simultaneously.
Chronic Hypoxia / Home O₂ Pulmonary
Her oxygen levels drop below normal, especially with activity. She started home oxygen in April 2024. If she looks labored, tired, or her lips/fingernails look bluish, check her oxygen. Her 6-minute walk test showed SpO₂ at 89% — she desaturates with minimal exertion.
Paroxysmal Atrial Fibrillation Cardiac
She had a cardiac ablation in Feb 2022. Afib can still recur. Signs: rapid irregular heartbeat, palpitations, dizziness, chest discomfort. She also has borderline pulmonary hypertension (PHTN) found on echo in 2024, with an abnormal right heart cath in 2025. Her heart is under real stress.
Pathological Fractures / Osteoporosis Bone
She has had 4+ pathological fractures — meaning bones that broke without significant trauma, due to bone fragility from steroids and inflammation. Both 5th metatarsals have been surgically repaired. Falls are a serious risk. Help clear pathways, ensure floors are safe, and always take a fall or sudden bone pain seriously.
Immunosuppression Immune
She takes Cellcept, Prednisone, and Cimzia — all of which suppress her immune system significantly. This means infections that would be minor for most people can become serious quickly for her. She has a history of MRSA and sepsis. Take any sign of infection — fever, unusual redness, wound changes — seriously.
Bilateral Hip Replacements Surgical
Left hip replaced Nov 2017, right hip Feb 2018. These are prosthetics — they need to be disclosed to any surgical team. She also has cervical disc prosthetics at C5–C7 (2024). Do not let any provider give her CHG skin prep without flagging her allergies first.
Steroid-Induced Myopathy Muscle
Long-term prednisone use has weakened her muscles. She may tire quickly, have difficulty getting up from chairs or the floor, and have less strength than she appears to have. Don't underestimate how hard physical tasks can be for her.

Comfort & Support

Living with chronic illness is isolating. These small things matter more than you know.

"When she says she hurts, she hurts. When she says she can't, she can't. The kindest thing you can do is believe her fully and without question — every single time."

When She's Having a Bad Day

🗣️ Words That Help

🚫 What Not to Say

Physical Comfort

🛁 Bathing & Hygiene (Level 5)

🌡️ Heat & Cold

🍵 Food & Hydration

Emotional Wellbeing

💙 The Bigger Picture

🌟 On Good Days

⚠️ FLARE DAY

This entry is marked as a flare. Her care team may want to know.

Is this a flare? Turn on if she's in an active flare today
Lauri's Scale — Today's Score
Symptoms Today
Fatigue
Joint Pain
Muscle Pain
Headache
Facial Swelling
Nose
Left Ear
Right Ear
Breathlessness
Mobility
Pre-Syncope
Syncope
Burning Eyes
Difficulty Hearing
Tinnitus
Rib Pain
Sternum Pain
Sensitive Skin
Nausea
Eye Pain
Congestion
Factors
Steroids
Pain Meds
Pilates
Sleep / Extra Rest
10k Steps
Poor Sleep
CPAP Worn
Alcohol
Therapy
Massage
Traveling
Stressful Day
Heat
Cold
Vitals & Oxygen
ms
%
%
Wearing oxygen today? No
Notes
Attach Photos
📷

Tap to add photos — JPG or PNG
Good for tracking swelling, rashes, or skin changes

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