Healthy Living with Wolves & Butterflies

01/29/2025

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The Healthcare Hunger Games: May the Odds Be Ever in Your Favor (Spoiler: They Won’t Be)

Welcome to the Healthcare Hunger Games, where the goal isn’t winning—it’s surviving long enough to get a doctor to believe you. Contestants (aka chronically ill people) will battle their way through medical gaslighting, insurance denials, and doctors who diagnose based on vibes.

The rules are simple:

Doctors must dismiss your symptoms for as long as possible.
Insurance will deny a life-saving treatment just to see if you’ll give up.

You must prove you’re actually sick—over and over again—because apparently, lupus is just a hobby.

If you do manage to get help, expect delays, patronizing advice, and a crushing bill at the end.

Level 1: The Primary Care Gauntlet

Your journey begins at the doctor’s office, where you explain—once again—that lupus is an actual disease and no, you’re not just “stressed” or “depressed” or “not trying hard enough.”

The doctor nods sympathetically, orders the absolute bare minimum of tests, and sends you home with the magical cure-all: Tylenol and hydration.

If you're lucky, they’ll graciously refer you to a specialist—who will have an opening sometime in the next presidential administration.

Level 2: The ER Arena

Ah, the ER. A magical land where you’re either not sick enough to be admitted or too sick for them to actually do anything but give you IV fluids and shove you out the door.

Let’s take a trip down memory lane to one of my favorite personal rounds of the Hunger Games:

I was in the hospital with a severe lupus flare, pneumonia, and severe sepsis. My blood pressure was 70/30, my fever was 102, and my body was actively trying to peace out on me. Enter Dr. Resident—fresh-faced, brimming with confidence, and possessing exactly zero clue what he was talking about.

After glancing at my rapidly declining body, he declared:

"There’s nothing wrong with you."

Oh? NOTHING WRONG? So I guess my organs are just being dramatic? Maybe my immune system is pulling a prank? Should I apologize for making his job inconvenient by actively dying?

My rheumatologist was livid, but Dr. Resident stood his ground, probably thinking, “This lady just needs a nap.”

And this, dear friends, is the final boss battle of the Healthcare Hunger Games—convincing a doctor that your very real disease isn’t just an overreaction.

Level 3: The Insurance Obstacle Course

Surviving the doctors is just the first hurdle. Now you get to fight insurance, which exists solely to see how close they can get you to giving up.

Need a life-saving medication? Denied.
Need an infusion? Not medically necessary.
Need to see a specialist before your body completely gives out? We can get you in by 2028. 🤦🏼

Their favorite phrase? “You didn’t meet criteria.” Which is odd, because I’m pretty sure the criteria for needing treatment is… needing treatment.

Calling them for answers is also a fun game. You’ll navigate a phone tree longer than a Tolkien novel, only to be told, “I don’t know, that’s just the policy.” Cool, thanks, super helpful.

Bonus Rounds: Fun Challenges Along the Way

Medical Gaslighting Marathon – Convince a doctor that your pain is real. (You will lose.)

Medication Side Effect Roulette – Will your new med help, or will it give you an extra disease? Who knows!

“But You Don’t Look Sick” Challenge – Convince people you’re suffering when you don’t look like a zombie. (Good luck.)
Game Over? Not Yet.

Despite the gaslighting, delays, and insurance acrobatics, we keep going. Not because the system suddenly works, but because lupus doesn’t care about wait times, insurance appeals, or whether a doctor believes you. It just keeps attacking.

And so we fight. For the right diagnosis. For treatment. For basic human decency. Because if we don’t, lupus wins.

So to my fellow warriors in the Healthcare Hunger Games:

Keep pushing. Keep demanding better. And if a doctor ever tells you “there’s nothing wrong with you” while you’re actively dying? Tell them to take their medical degree, roll it up, and shove it!
©️Jenn Schoch, 2025
Lupus and Me

01/27/2025

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Avascular Necrosis in Lupus

Avascular necrosis (AVN), also known as osteonecrosis, is a condition characterized by the death of bone tissue due to a lack of blood supply. In systemic lupus erythematosus (SLE), an autoimmune disorder, AVN occurs with increased frequency and severity. My post explores the etiology, pathophysiology, consequences, treatment options, and ongoing research surrounding avascular necrosis in lupus patients.

*Etiology
Avascular necrosis in lupus is primarily attributed to several factors:

1. Steroid Treatment: The most significant risk factor for AVN among lupus patients is glucocorticoid therapy. High doses or prolonged use of steroids can lead to fat emboli, increased intraosseous pressure, and subsequent ischemia.

2. Disease Activity: Active SLE may elevate the risk due to inflammation and vasculitis, which can impair blood flow to bone tissue.

3. Coagulation Abnormalities: Many lupus patients have antiphospholipid syndrome, increasing the risk of thrombosis and microvascular occlusions, further compromising bone perfusion.

4. Genetic Factors: Certain genetic predispositions may contribute to the risk of AVN. Lupus patients often present with polymorphisms affecting coagulation and inflammation.

5. Alcohol Use: Excessive alcohol consumption is linked to fatty liver disease and can contribute to AVN development.

*Pathophysiology
The pathophysiological mechanism of AVN in lupus involves the interplay between systemic factors and localized bone changes:

1. Ischemia: The primary event in AVN is a reduction in blood supply to the bone, usually related to either vascular compression or thrombosis.

2. Fat Embolism: Steroids may cause bone marrow fat to enter circulation as fat globules, leading to embolism and vessel obstruction.

3. Inflammatory Mediators: In SLE, increased production of pro-inflammatory cytokines such as TNF-alpha and IL-1 contributes to endothelial dysfunction, enhancing vascular permeability and affecting blood flow.

4. Bone Remodeling Dysregulation: The balance between osteoblasts and osteoclasts may be disrupted in lupus, resulting in weakened bone structure and increased susceptibility to necrosis.

5. Microvascular Damage: Vascular damage due to immune complex deposition can contribute to the poor perfusion and subsequent ischemia of bone.

Progression of Avascular Necrosis
The progression of AVN can be categorized into several stages, which detail the pathological changes from initial injury to severe bone damage.

1. Initial Phase (Stage 0):
- Severe reduction in blood supply; however, no clinical symptoms or radiographic changes are noted.
- May involve early ischemic changes at the microvascular level.

2. Pre-Necrotic Phase (Stage 1):
- Introduction of subtle clinical symptoms, such as joint pain that may be dismissed as typical lupus joint symptoms.
- Imaging studies (MRI preferred) reveal bone marrow edema but no necrotic bone changes.

3. Necrotic Phase (Stage 2):
- Appearance of radiographic changes, such as crescent sign (subchondral fracture).
- Patients begin to experience significant joint pain and limitations in range of motion.
- Histological examination shows necrotic bone tissue with empty lacunae where osteocytes used to reside.

4. Advanced Phase (Stage 3):
- Significant bone collapse; joint deformity and loss of mechanical integrity become apparent.
- Symptoms intensify, affecting daily activities and quality of life.
- Radiographs demonstrate subchondral bone collapse and joint space narrowing.

5. End-Stage Phase (Stage 4):
- Severe degenerate arthropathy results from extensive necrosis and collapse.
- Marked functional impairment, often necessitating joint replacement surgery.
- Advanced imaging (MRI or CT) reveals severe bone destruction, cyst formation, and extensive degenerative changes in the joint structure.

The progression of AVN in lupus is a critical consideration in managing SLE. Recognizing early signs and symptoms, followed by appropriate imaging and intervention, is crucial to prevent significant disability. Regular monitoring and risk management strategies (e.g., minimizing corticosteroid use) are essential for at-risk patients to preserve bone integrity and joint function.

*Consequences
Avascular necrosis can lead to various serious complications:

1. Joint Pain and Dysfunction: The most common symptom is joint pain, particularly in weight-bearing areas such as the hip and knee. This can lead to decreased mobility and quality of life.

2. Progressive Osteoarthritis: Over time, AVN can progress to joint degeneration and potentially result in osteoarthritis due to mechanical instability and changes in joint mechanics.

3. Necrosis and Collapse: In advanced cases, the structural failure of the affected bone can occur, leading to joint collapse, particularly in the femoral head.

4. Psychosocial Impacts: Chronic pain and disability can lead to significant psychosocial impacts, including depression and anxiety, resulting in decreased adherence to lupus treatment regimens.

*Treatments
Management of avascular necrosis in lupus patients focuses on alleviating symptoms and preventing progression:

1. Conservative Management:
- Pain Management: Nonsteroidal anti-inflammatory drugs (NSAIDs) can be used for pain relief.
- Activity Modifications: Weight-bearing activities should be limited to reduce stress on affected joints.

2. Physical Therapy: Strengthening exercises can help maintain mobility and support surrounding muscles.

3. Pharmacologic Approaches:
- Bisphosphonates: These drugs can enhance bone density and may prevent progression of necrosis.
- Anticoagulants: For patients with antiphospholipid syndrome, anticoagulation therapy may reduce thrombotic complications that can exacerbate AVN.

4. Surgical Interventions:
- Core Decompression: This surgical procedure alleviates internal pressure, potentially postponing the need for joint replacement.
- Bone Grafting: In select cases, grafting can help restore blood supply.
- Joint Replacement: In cases of severe collapse and dysfunction, total hip or joint replacement may be necessary.

*Research Directions
Ongoing research is focused on several fronts:

1. Pathogenesis Studies: Investigating the molecular mechanisms underlying vascular injury and ischemic bone death in lupus patients.

2. Early Detection: Developing imaging techniques capable of detecting AVN at earlier stages, such as MRI protocols that utilize advanced sequences.

3. Preventative Strategies: Investigating potential preventative treatments for those at high risk due to corticosteroid use, including the effectiveness of bisphosphonates and other novel medications.

4. Biomarkers: Identifying biomarkers that predict the onset of AVN in lupus patients could enable earlier interventions.

5. Longitudinal Studies: Monitoring the long-term outcomes of different treatment modalities in preserving joint function and preventing necrosis.

*Conclusion
Avascular necrosis is a significant complication in patients with systemic lupus erythematosus, largely driven by steroid use, disease activity, and coagulopathy.

Understanding the multifactorial etiology and pathophysiology is crucial for developing effective preventive and therapeutic strategies.

Ongoing research continues to expand knowledge, potentially improving outcomes for affected individuals.

Jenn Schoch, 2025
Lupus and Me 💜

References
- Bhandari, M., et al. (2020). Pathophysiology and management of avascular necrosis in systemic lupus erythematosus. *Clinical Rheumatology*, 39(9), 2527-2537.
- Hafner, A. M., et al. (2018). Steroid-induced osteonecrosis: Current strategies for prevention and management. *Osteoporosis International*, 29(10), 2257-2267.
- Jo, H., et al. (2021). The relationship between systemic lupus erythematosus and avascular necrosis: A systematic review.
- McCarty, C. A., et al. (2019). Long-term consequences of glucocorticoid treatment in lupus. *Lupus*, 28(9), 1150-1158.
- Toloza, S. M., et al. (2017). Understanding the role of disease activity and treatment in avascular necrosis in lupus. *Lupus*, 26(10), 1092-1100.
- Ward, N. L., et al. (2021). Inflammation and ischemia: A review of factors contributing to avascular necrosis in lupus patients. *Rheumatology International*, 41(4), 689-702.
- Yu, J., et al. (2022). Identifying biomarkers for early detection of avascular necrosis in lupus: A pilot study. *Arthritis Care & Research*, 74(12), 1981-1989.

01/22/2025

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In the stillness of dawn, shadows stretch and sigh,
A tempest brews within, where clarity drifts by.
CNS lupus, a storm in the neural expanse,
Transforms lucidity to fog, robbing thought of its chance.

Each morning’s light, a fragile ember’s gleam,
Flickers through the haze, shattering the dream.
A steaming cup, like solace in disarray,
In ephemeral moments, I search for the way.

The world whirls around, a cacophony of sound,
Yet I navigate softly on this treacherous ground.
Severe headaches crash like waves against stone,
With weakness in my limbs, I battle alone.

How, then, to cultivate gratitude amid despair,
When confusion reigns and clarity seems rare?
In laughter’s embrace and love’s gentle tether,
Can I find the threads that weave joy together?

With every breath, I rise, a phoenix from ash,
Charting through shadows, seeking light in the clash.
Though trials may strike like thunder’s fierce call,
I anchor my spirit and strive to stand tall.

In life’s relentless tempest, with its ebb and flow,
I ponder the strength that allows me to grow.
For in the midst of chaos, I search for the spark,
To illuminate gratitude within the dark.
©️Jenn Schoch, 2025
Lupus and Me

01/14/2025

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Understanding the Impact of Lupus on the Gastrointestinal (GI) Tract/System

Systemic lupus erythematosus (SLE), commonly referred to as lupus, is a multifaceted autoimmune disease characterized by widespread inflammation and tissue damage.

While many individuals associate lupus with its more prominent manifestations—such as skin rashes, joint pain, and systemic involvement—its repercussions on the gastrointestinal (GI) tract are often underappreciated. This post endeavors to provide an explanation of how lupus impacts the entire GI system, scrutinizing the underlying mechanisms, clinical manifestations, and management strategies associated with this condition.

Overview of Lupus

Lupus is distinguished by the aberrant activation of the immune system, which targets healthy tissues and organs, leading to inflammation and dysfunction.

This chronic condition may affect multiple organ systems, including the integumentary, musculoskeletal, renal, cardiovascular, and pulmonary systems.

The clinical presentation of lupus is heterogeneous, with symptoms varying widely among patients, complicating both diagnosis and management.

The Gastrointestinal Tract: An Anatomical Synopsis

The gastrointestinal tract is an intricate system comprising various hollow organs that facilitate digestion and nutrient absorption. It includes:

- **Oral Cavity**: The entry point for food, where mechanical and enzymatic digestion begins.
- **Esophagus**: A muscular conduit that transports food from the mouth to the stomach.
- **Stomach**: A highly acidic environment that further breaks down food and initiates protein digestion.
- **Small Intestine**: Comprising the duodenum, jejunum, and ileum, it is the primary site for nutrient absorption.
- **Large Intestine**: Responsible for water absorption and the formation of f***l matter.
- **Accessory Organs**: The liver, gallbladder, and pancreas play critical roles in digestion through the production of bile and digestive enzymes.

The Multifaceted Impact of Lupus on the Gastrointestinal System

1. **Esophageal Involvement**

Lupus is known to induce esophageal dysmotility, characterized by abnormal contractions of the esophageal muscles. This can manifest as:

- **Dysphagia**: Difficulty swallowing, which can result from both muscular dysfunction and structural changes.
- **Chest Pain**: Often misinterpreted as cardiac-related discomfort, esophageal spasms can cause significant distress.
- **Reflux Symptoms**: Gastroesophageal reflux disease (GERD) may be exacerbated due to impaired motility and increased gastric acid secretion.

2. **Gastric Complications**

Patients with lupus may experience several gastric disorders, including:

- **Gastritis**: Inflammation of the gastric mucosa can lead to symptoms such as nausea, vomiting, and epigastric pain.
- **Peptic Ulcers**: The chronic use of nonsteroidal anti-inflammatory drugs (NSAIDs) to manage lupus-related pain significantly increases the risk of developing gastric and duodenal ulcers.
- **Gastroparesis**: This condition, characterized by delayed gastric emptying, can cause symptoms like early satiety, bloating, and recurrent nausea. Gastroparesis may stem from autonomic nervous system involvement in lupus, resulting in impaired gastric motility.

3. **Small Intestinal Disorders**

The small intestine can also be adversely affected by lupus, leading to:

- **Malabsorption Syndromes**: Damage to the intestinal mucosa may compromise nutrient absorption, resulting in deficiencies of essential vitamins and minerals, such as vitamin B12 and iron.
- **Bacterial Overgrowth**: Alterations in intestinal motility can predispose patients to small intestinal bacterial overgrowth (SIBO), leading to symptoms such as bloating, diarrhea, and abdominal discomfort.

4. **Colonic Complications**

The large intestine is not exempt from lupus-related complications, which may include:

- **Colitis**: Inflammation of the colon can lead to symptoms like abdominal pain, diarrhea, and re**al bleeding. This may be exacerbated by the underlying autoimmune process or the side effects of medications.
- **Diverticulitis**: While not directly caused by lupus, the inflammatory nature of the disease can increase susceptibility to diverticular disease, manifesting as localized pain and gastrointestinal distress.

5. **Oral Manifestations**

Lupus can also present with oral complications, including:

- **Mouth Ulcers**: Recurrent oral ulcers or lesions are common in lupus patients. These painful sores can impede oral intake, complicate nutrition, and contribute to overall discomfort.
- **Xerostomia**: Dry mouth may occur due to autoimmune attacks on salivary glands, further complicating oral health and digestion.

6. **Liver and Pancreatic Involvement**

Lupus can affect accessory organs, leading to:

- **Autoimmune Hepatitis**: This condition entails inflammation of the liver, which can impair hepatic function and result in symptoms such as jaundice, fatigue, and abdominal pain.
- **Pancreatitis**: The inflammation of the pancreas can arise from both the disease itself and the pharmacological management of lupus, leading to acute or chronic abdominal pain, nausea, and vomiting.

Mechanistic Insights into GI Complications in Lupus

The pathophysiology underlying gastrointestinal involvement in lupus is multifaceted and involves several mechanisms:

- **Autoimmune Activity**: The dysregulated immune response contributes to localized inflammation within the GI tract, resulting in symptoms and functional impairment.
- **Pharmacological Side Effects**: Medications employed in lupus management, including corticosteroids and NSAIDs, can exacerbate gastrointestinal symptoms and contribute to mucosal damage.
- **Vascular Complications**: Lupus can induce vasculitis, affecting blood flow to the GI organs, potentially leading to ischemia and subsequent dysfunction.
- **Infectious Risks**: The immunosuppressive nature of lupus treatments increases susceptibility to infections, which can have profound effects on gastrointestinal health.

Clinical Presentation of GI Involvement in Lupus

Patients with lupus may report a range of gastrointestinal symptoms, including:

- Abdominal pain and cramping
- Nausea and vomiting
- Diarrhea or constipation
- Bloating and excessive gas
- Unintentional weight loss
- Loss of appetite
- Oral lesions or ulcers

Given the nonspecific nature of these symptoms, they can often be misattributed to other conditions, complicating accurate diagnosis and timely intervention.

Diagnostic Approaches for GI Symptoms in Lupus

A comprehensive diagnostic workup for GI involvement in lupus may encompass:

- **Clinical Evaluation**: A detailed patient history and physical examination to assess symptomatology.
- **Laboratory Tests**: Blood tests to evaluate liver function, inflammatory markers, and the presence of specific autoimmune antibodies.
- **Imaging Studies**: Techniques such as ultrasound, computed tomography (CT), or magnetic resonance imaging (MRI) may be employed to visualize the GI tract.
- **Endoscopic Procedures**: Upper or lower gastrointestinal endoscopy allows for direct visualization of the mucosal surfaces, providing insights into inflammation or structural abnormalities.

Management Strategies for GI Symptoms in Lupus

Addressing gastrointestinal symptoms in lupus necessitates a multidisciplinary approach that includes:

- **Medication Review**: A thorough evaluation of current medications to identify those that may exacerbate GI symptoms, with potential adjustments made under physician guidance.
- **Dietary Interventions**: Implementing a balanced diet rich in essential nutrients, while avoiding known dietary triggers, can alleviate some symptoms. Consultation with a registered dietitian may be beneficial.
- **Symptomatic Treatment**: Pharmacological management may include antacids, proton pump inhibitors, or medications targeting specific symptoms such as nausea or diarrhea.
- **Regular Monitoring**: Ongoing assessment of gastrointestinal symptoms and overall health is crucial for early identification and management of complications.

Conclusion

The gastrointestinal manifestations of lupus are multifaceted and can significantly impact a patient’s quality of life. Recognizing and understanding the ways in which lupus affects the GI tract is essential for effective management and comprehensive care.

If you or someone you know is living with lupus, it is imperative to maintain open communication with healthcare providers regarding any gastrointestinal concerns.

Early intervention can mitigate complications and enhance overall well-being. By fostering awareness and understanding of these complex interactions, we can create a more supportive environment for individuals affected by this challenging and often misunderstood condition.

References
JohnsHopkins
HSS.edu
Mayo Clinic
NIH.gov

Jenn 💜Lupus and Me

12/07/2024

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A protein that those with autoimmune dis-ease should be taking hhmmmm

Breakthrough research reveals a “Miracle Molecule” that can reprogram and balance your immune system in just 14 days.

11/05/2024

https://www.theatlantic.com/health/archive/2024/11/lupus-car-t-immune-reset-autoimmune-disease/680521/

Lupus has long been considered incurable—but a series of breakthroughs are fueling hope.

10/07/2024

Where are my MSU Bobcat Fans vs UM Griz Fans?

Wraffle Lap Quilt 60 x 60
designate Bobcat or Griz

Alternate drawings tablerunner, Fleece scarf, and pillowcase set.

07/21/2024

https://www.facebook.com/share/r/jKtuFS9v6H5Pj5WT/?mibextid=oFDknk

07/08/2024

That's why their "10 - 1 pain scale" doesn't work!

06/03/2024

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