Just Out of My Grasp - My Personal Journey with SLE

 Ahoy Fellow Fathomers, I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I found out on June 19, 2013 the reason for many of my ongoing health problems is because I have systemic lupus, also known as SLE.
Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.
Hugs for today …
Of course I read all the paperwork and prescription information the rheumy (the cute nickname for rheumatologist) gives to me. The usual glutton for punishment I am, I burn up the computer keys in searches for more details. I need to know more about lupus and the various problems associated with the disease. Everything I read scares the wits from me- Especially the discussion forums for people posting their experiences and daily struggles of living.
Where did this name, lupus, come from anyway? It sounds almost benign. From Lupus.Org
 Q. Where did the name "lupus" come from?
A. Lupus was probably first observed in the 13th century, and the physician who described it called it "wolf's bite" because of the redness across the cheeks. The term "lupus erythematosus" was first used in 1851 by a French physician named Pierre Cazenave. "Lupus" is the Latin word for "wolf," and "erythema" is the Greek word for "redness" or "blush." As physicians saw more of the disease and understood more about it, a physician named Moriz Kaposi used the terms "lupus disseminated" and "lupus discoid" for the first time in the mid-1800s to describe skin disorders. The famous Sir William Osler first used the term "SLE" in papers he wrote on systemic lupus at the turn of the century; however, it was not until the 1920s and 1930s that SLE was really defined. -- Evelyn V. Hess, M.D., M.A.C.R., M.A.C.P.
So, am I a wolf? LOL- with the Eye of the Tiger?
The more I read, the more I staunchly decide that will NOT be me. It can’t be me! I have way too much living to do, races to run, jobs to do, places to visit, bike rides to take. No one in their right mind wants this diagnosis. The future is far too unknown and lupus can affect healthy organs in a cruel and ill-timed whim. Where literally a day may begin normally and end up horribly with little warning.
The frustrating part is the not knowing and how little is known about how lupus actually affects systems such as the Central Nervous System, which I have large involvement.

To be continued...

Comments

Lilly said…
Hi Davee, I was diagnosed May 14. SLE, fibromyalgia and have a pre-existing thyroid problem. I joined some FB support groups and found it all rather depressing...and scary. It's amazing how many people are affected by auto-immune disorders. So, know you are not alone. Your blog showed up in my FB news-feed. Feel free to message me, I am determined to not let this 'thing' define me.
Lilly.Maeve at gmail
Davee said…
Good evening, Lilly, thank you so much for sharing. I was diagnosed in June, and it hit me out of nowhere. I knew I didn't feel right, but, I thought it would be an "easy fix". I agree, sometimes, when I read the forums, it scares me because people get so sick.
I'm with you, I'm not giving up on my life I worked so hard to create. Even if I have to pace myself, I'm going to return to some kind of normal.
Thank you for reaching out. I would like to keep in touch. Have a great weekend.
D

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