Lupus Awareness Blog No. 13 – Miz Flow’s Life of a Thirty-Something with Lupus
The Lupus blogger in today’s spotlight is Flo, a self-described “30-something year old female with Lupus!” Her blog www.flowonlupus.com chronicles her lupus journey that started when she was just a young teen, shortly after becoming class president and 8th grade valedictorian. That summer, her parents bought her a bike, and she recalls riding “throughout the city every single day of that summer.” By November, she was paralyzed with fatigue, sometimes having to crawl from her bed to other rooms.
Eventually Flo was diagnosed with Lupus Nephritis, and started dialysis. Along the way, she has experienced many extremely severe lupus manifestations and surgeries. She reflects, “Little did I know what else was in store for me.”
She recently graduated from college, followed by a long-awaited kidney transplant. She tells her readers, “I am so excited about what the future holds” and what “just life in general has in store!” She hopes to apply her recent Human Resources degree to a recruiting job her not-t00-distant future career.
“Miz Flow” as she dubs her blogging persona, is an amazing lupus patient who has succeeded in battling the many challenging faces of lupus, and has remained positive and hopeful. Flow started her blog in 2007 when she was in her mid-twenties, and it is an excellent resource for young lupus patients and their families.
You will like the candor and sincerity of her honest blogging, as well as the refreshing diversity of topics and interests of her posts that focus outside the lupus in her life.
Lupus Truth No. 13 – Fatigue impacts employment
Coping with Lupus: As many as 80 percent of people with lupus experience fatigue. For some, fatigue can be debilitating, even to the point of forcing them to stop working.
It is ironic that this is the lupus fact for today! I am sitting at home, waiting on the mental shakiness of a severe morning CNS flare to pass, so that I can try to telecommute for the afternoon.
Earlier, I woke up in a near state of stupor, and infused with diffuse joint pain and aching from head to foot. I am so tired that I think could work up a sweat just lifting my fingers to type. Shall we call this bone-tired fatigue?
Along with today’s whopping lupus flare is the invisible scrambled state of my mind. My cognition is in spurts and starts — putting two thoughts together is incredibly slow and difficult. Typing this blog post is requiring unusual mental effort, while in-between typing each sentence my fatigue is making me fall asleep. Wow, am I exhausted!
Eating a lean lunch of mixed fruit, ham/cheese rolls ups, Triscut crackers and tea did not seem to clear my mind or revive my body.
In a bit, I am going to try to use my indoor cycle trainer in first gear peddling very slowly for a few minutes, to see if I can get my body and brain to re-connect. The way my balance and coördination are impaired now, even this will be difficult.
I have some analytical writing work to do this afternoon that is still way too difficult in the current the state of my wobbly brain and impaired focus. I have prayed and asked for God’s help to meet my obligations and responsibilities, and to make the hidden metabolic miracle of quieting this flare to take place.
To learn more about this lupus fact, please read my post from May 13, 2012.
Plan to POP — Put on Purple — for Lupus May 17th
Remember to dry-clean your purple duds to get ready to “POP” — Put on Purple — for Lupus on this Friday, May 17th!