About The Author
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE).
True to its name, SLE is a systemic condition throughout the body.
In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
I also suffer from several chronic illness comorbidities such as Raynaud's Disease and Osteo-Arthritis.
Life With Lupus: Online Community Review - BetterDays
Please note this review is NOT a paid endorsement.
BetterDays
Recently launched on March 31, 2021, BetterDays "helps people take on chronic illness, together".
BetterDays openly states their purpose and invites others to Stand with us and join our journey.
The company’s vision, belief, and mission include respectively…
- A world where health is equitable for all
- Solutions for the underserved = solutions for all
- To build technology that empowers the individual, unifies underserved communities, and transforms healthcare for all
I find the new, bright, and clean user interface of BetterDays to be a great user experience with many easy to use features
Microsoft's Edge browser screen capture of a BetterDays "Experience" I posted that links to the Lupus Foundation.
Whatever I could think of was easy to find and supported.
Features such as…
- profile details including medications and conditions
- profile picture
- create posts and comments to share my health experiences
- add links to other sites to reference articles, posts, or pictures
- ability to mark posts “useful” in support of others who post
- tag posts with conditions
- filter the health experiences by what is relevant to me such as "Lupus" or "Systemic Lupus Erythematosus"
- image uploads
- optional email alerts for new members, new experiences, or comments
- text formatting support
- supported by my phone, tablet, and desktop computer
The community itself was open and inclusive. I found belonging cues were easily created via the interactions with others with the same or different conditions.
For more information about BetterDays please see the following article I volunteered to write for their CEO, who also suffers from his own chronic illness...
BetterDays - A New Inclusive Platform To Share Chronic Condition Experiences
More "Life With Lupus" articles by this author...
- The Wolf Within Me
- When The Wolf Escapes
- Medications
- Mortality
- Perhaps I'm A Better Man...Make That Wolfman?
- The Life I Lost
- Everything Hurts
- Coping At Work
- Dealing With Doctors
- Flare
- Home Remedies
- Relating To Others
- Fear
And related articles by this author...
- Working With Serious Or Deadly Illness?
- Biggest Surprise Working With Serious Illness
- Lupus And Raynaud's Disease
- No One Gives A Fork How Many Spoons I Have
So What Exactly Is Lupus?
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.
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