Posts

A Rough Year

This past year has been a pretty rough year for health.  Last September, I was removed off of a medication to explore different potential d…

Time & Spoon Management

Do you ever feel like most of your time is wasted being sick??  When I am going through a particularly bad spell, all I focus on is listeni…

A Malfunctioning Ship

If you haven't seen the movie Passengers, there are spoilers below.  In this movie, the ship that the passengers are traveling on start…

One-Size-Fits-All

One of the biggest myths of healthcare is a one-size-fits-all approach. We are led to believe that:  Bacterial Infection -> …

Coping With Long Wait Times

This is a topic that was liked by multiple people to write about - and it's such an important topic:  How do you cope with …

Dietary Update - potatoes, potatoes, potatoes

Things are starting to move in the right direction!  On November 20, 2022, I reduced to a mostly liquid and soft-food diet. Every 2-3 weeks…

Rare Disease Day - Mind-Blowing Daily Symptoms

Feb 28 is Rare Disease Day!  What very normal/daily symptom do you deal with that would be considered mind-blowing to someone w…

Sometimes You Just Have to Laugh About It

I've been struggling lately with some very annoying (and often mildly-moderately painful) symptoms since coming off of a medication.  I…

Swelling Disease Update

Lots of updates happening lately. Here is the current update of the swelling disease/disorder that I have.  Since the end of 2010, I have h…

Perpetually Temporary State

Everything is temporary, we all know that, but when it comes to chronic illness, temporary is etched in our heads every single day - for th…

I Love My Dysfunctional Body

My dysfunctional body has been through what feels like hell and back. It goes back and forth between good days and bad - every morning figu…

Struggling with Isolation

Self-isolation and social distancing is relatively simple in its concept, and difficult in its execution.  As I have mentioned on here befo…

Balancing Act

Managing Covid-19 and the economy is going to be a balancing act. Once we have reached and passed the peak of this first wave of infections…

You Might Have a Chronic Illness if:

You Might Have a Chronic Illness if:  • You were told nothing was wrong months-years before a diagnosis was confirmed • You have ever felt …

Ambulatory Wheelchair

I am an ambulatory wheelchair user.  This means that I can only walk short distances, my body tires easily and can give out, and I often ne…

Liaison

Snowy days call for outdoor yoga practice.  My day today is all about phone calls and filling out forms.  Sometimes being the c…

You Are Not Weak

Living with any physical ailment is physically and mentally taxing.  Who knew that living with illness meant taking on so much judgement, a…

Reading Back - A Week in The Life...

I have been in the strict habit of keeping a medical journal for years.  I cannot take the credit for it, since I thought it was a ridiculo…

What it Means to Have an Invisible Illness

It is often difficult to tell what anyone else around us is thinking, feeling, or experiencing.  A fake smile can hide a life of loss and d…

Skipping Out on Bloodwork

My energy has been pretty depleted as of late, so I am able to do less and less during the day before my body decides it's enough.  Som…