Basic Stuff

  • Name: Lavenderblue
  • Country: United States
  • State: Arkansas
  • City: Little Rock
  • Gender: Female
  • Education: Jr. College
  • Primary Illness: Long COVID
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Postural Orthostatic Tachcycardia Syndrome (POTS)
    • Neurally mediated hypotension
    • Irritable bowel syndrome
    • Ehlers Danlos Syndrome (EDS)
    • Mast Cell Activation Syndrome (MCAS)
    • Long COVID
  • Year Illness Began: 2020

Functioning Interrupted

Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 20
(Moderate to severe symptoms at rest. Unable to perform strenuous activity; overall activity 30%-50% of expected. Unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.)

Work Interrupted

  • Former Occupation: Registered Nurse
  • Job Responsibilities at Former Occupation:

    Weekend Supervisor

  • Years of Work Lost: 3
  • Current Work Status: On disability

Income Interrupted

  • Yearly Income Before Becoming Ill:


  • Yearly Income From Disability:


  • Minimum Current Annual Income Loss:


  • Total Projected Economic Losses For Years Not Worked:


Other Interruptions

Certified Disabled: Yes

  • This illness has severely impacted my ability to financially prepare for retirement
  • I left my job or retired early
  • I lost my house or had to move to a smaller dwelling
  • I have been unable to or found it very difficult to date

Most Impactful Loss

I was fired because I could no longer perform my job. The majority of my identity was defined by my job. I work 4 day work weeks so I could garden more. I am not able to work in my garden. I am no longer able to walk my dogs. The health and welfare of my dogs means everything to me.

My Story

At first I thought it was just taking a long time to recover. I took it easy for a bit. It never occurred to me that I wouldn’t get back to my regular self. I was incredibly healthy, walked 5 miles most days with my dogs, gardened most days until dark. I even had a headlamp so I could work even later! I was devoted to my job, and found great satisfaction with my work as a Nurse. I was keeping track of my temperature and was concerned when I noticed I was running a low grade fever for four weeks…then six weeks. Saw my primary care doctor who said it was just menopause and I needed an antidepressant. But my hands and feet were turning purple when I got too tired. And I got too tired just brushing my teeth! Different symptoms started to come into play, and I tried everything I could think of. I slept 3 days straight. That didn’t help. I acted like nothing was wrong and that made things worse. I would sleep most of the time I was off work, take as many sick days as possible, and when I did try to do my job, I would have to nap during my lunch break, then on my 15 minute breaks as well. I couldn’t sit upright without passing out. I had to take unpaid medical leave. But I was determined to “fix” whatever it was that was wrong with me. I spent thousands of dollars on supplements, saw specialists out of state, traveled cross country for testing, paid out pocket for experimental lab work. I would spend as much time as I could trying to research my condition, but would end up reading the same article day after day because I couldn’t remember what I had read. I have physical symptoms, mental/cognitive symptoms, I have objective test results and lab results. But I have not been able to find a primary care doctor who believes there is anything wrong with me. “It’s all in your head…you need exercise…it’s just fibromyalgia.” But I have objective findings. I get post exertional malaise with activity. I’ve seen two different rheumatologists and I don’t have fibromyalgia. It has been a struggle. Loosing my job, my hobbies, not able to care for myself or my dogs, but perhaps the biggest blow is the disbelief of my medical peers. More than disbelief, it’s disdain that a lazy middle aged female would keep bothering them about nothing. I’m moving into an Independent Living Facility because I cannot do what I need to do to maintain a house, prepare meals or drive to appointments. I took my good health for granted and never dreamed everything would be taken away.

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