Alpha-Gal Disease

05/02/2026

Orbital eye & sinus infection. Antibiotics & liquid Albuterol. Urgent referral to return early to eye sergeant for earlier post op exam. Will need shots into each eye & rest. Hypoglycemia.

04/11/2026

Health isn’t always visible & should be priority. Specialties remind me, real recovery requires rest without conditions. I’ve carried weight of ‘last conversations’ with many loved ones who died heartbroken & it taught me peace isn’t a want—it’s necessity for survival. I’m struggling to find joy when healing doesn't happen on schedule. Anyone else feeling pressure to be 'okay' when you’re not?

03/28/2026

The Spoon Theory, created by Christine Miserandino, is a metaphor for managing chronic illness or disability, where "spoons" represent a limited daily supply of energy. Each task (e.g., showering, working) costs spoons, and running out means having no energy left. It helps visualize invisible, finite energy, forcing, and empowering, users to prioritize tasks and plan their day.
National Center on Health, Physical Activity and Disability
National Center on Health, Physical Activity and Disability
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How the Spoon Theory Works
Limited Resources: A person with a chronic condition starts the day with a limited, finite number of spoons (e.g., 12), whereas healthy individuals may have an unlimited supply.
Cost of Action: Every activity—physical, emotional, or mental—costs a certain number of spoons.
Making Choices: If a person uses all their spoons, they cannot function properly, forcing them to make difficult choices about how to spend their energy.
Borrowing Energy: Individuals may borrow spoons from the next day, but that often results in starting the following day with even less energy.
Lymphoma Action
Lymphoma Action
+4
Application to Health
Chronic Illness & Pain: Used by people with Lupus, Fibromyalgia, and other conditions to manage energy and communicate their limits.
Mental Health: Used to explain the, often invisible, energy drain from depression, anxiety, ADHD, and autism, where decision-making or emotional regulation can cost spoons.
Cognitive Fatigue: Applied to help manage, for example, brain fog following injuries.
Neuro Speech Solutions
Neuro Speech Solutions
+2
Benefits of Using the Spoon Theory
Communication Tool: Enables people to explain to friends and family why they may not be able to participate in all activities, increasing understanding of "invisible" disabilities.
Self-Care & Pacing: Encourages rationing energy, resting before running out, and planning for, rather than pushing through, fatigue.
Community Support: Created the term "spoonie" for people who share this experience, fostering a supportive community.
National Center on Health, Physical Activity and Disability
National Center on Health, Physical Activity and Disability
+4
Criticisms and Challenges
Not One-Size-Fits-All: The number of spoons can vary daily, and factors like poor sleep or stress can cause unexpected shortages.
"Invisible" Nature: People with hidden, yet chronic, conditions might be viewed as lazy or unmotivated if others don't understand the metaphor.
Wikipedia
Wikipedia
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Common Examples of Spoon Costs
1 Spoon: Getting dressed, feeding a pet, or answering a few emails.
2-3 Spoons: Preparing a simple meal, showering, or a short walk.
4+ Spoons: A full workday, going to a doctor's appointment, or going to the grocery store.

03/02/2026

Cataracts: They say "simple surgery," but for those of us with complex allergies, there is no such thing. I recently underwent eye surgery (complex (dense white CF cataract) with zero anesthesia, numbing, or drugs. Remained still while soft-spoken surgeon worked with no turning back.

Now, I am in a dark room, quiet Recovery, full-time job—24 doses of eye solutions a day I can’t even see to identify.

Humbling & frustrating to rely on others when you’re used to being in control. I hate needing help. But with medical maintenance, & strict orders not to move, cook, bend over, avoid sick people, shake head, avoid stress at all costs, or even pick up anything heavier than a small book, keep head elevated & cooled, minimal sound exposure, & only lay on right side (2-3 weeks)- I’ve had to lean on other’s.

The brain is a wild thing- adjusting to “panoramic" world filled with flickering lights, prisms (common with metal hooks & rings- cat eye effect during dialation), & double vision; disorienting. However, I’m healing & improving. One eye down. Next month, one to go. Then, medical & retinopathy exam. All goes well, months later, glasses.

Focusing on quiet, audiobooks, & patience. Under strict orders to keep my eyes & brain resting!

01/24/2026

New Hospital Dr. Change & now no care plan for when I leave hospital. Dentist wont answer hospital calls (or mine). I’m not allowed to eat until tooth fixed. Unsteady & sick. Blood pressure not stabilized. Treated hypoglycemic episode

Last week, Dentist tried to fix broken tooth, decay, after two root treatments, i was still climbing walls. Ct showed extra root missed. Dentist didnt expect blue eyed freckle face to show markers of NAI traits. I became septic before I could be seen. Dentist told me to see Medical Doctor first- I went to Urgent Care. They recognized Dental Sepsis. Transported me to Hospital. At first treated excellent & told i wouldnt be dischaged until tooth could be treated immediate either by original Dentist or Hospital Dentist- New shift Doctor has different ideas. He wants me to show up in person demand treatment by same Dentist. This we will be tricky considering I’m supposed to be medically transported there.

Nurse called Hospital Case Manager, who said nothings happening today because of weekend. Doctor needs to take safety into consideration. Monday, should be discharge plan.

Current change: Social Worker says they’ll be transporting me home. Have someone with me for now- to be available to call paramedics when my blood pressure spikes. I won’t be able to have surgery when blood pressure spikes. So- that will have to be treated. And- no good until dental surgery. Doesn’t make sense why a Hospital would discharge when I’m told I’ll have to have paramedics on standby.

01/14/2026

Reminder. Double check pills after going through TSA. Some of mine were switched with something else 🙄

01/12/2026

Fourth Doctor today, to cancel & re-schedule appointments without speaking to me first. Not liking this way of healthcare 🙄

01/08/2026

First experience with Cracked teeth & fairly sudden cavities. Used to have beautiful teeth. Thankfully have good Insurance.

12/17/2025

Just taking notes: Wearable Libre 3 within 10 digits of finger stick test. Drops hit within 45 minutes after highest digits.

10/23/2025