living with lupus, day by day, moment by moment

Without a proper diagnosis, it is impossible to get on the right road to recovery.  But when you have an autoimmune disease, or multiple overlapping diseases like me, it becomes very tricky.  I have, among others, lupus, thyroidism and fibromyalgia.  All three diseases say I will experience debilitating fatigue.  So can I alleviate the fatigue by taking more immunosuppressants or steroids (to treat lupus), or more cymbalta or gabapentin (to treat fibromyalgia) or more thyroid medicine? Or could it be that the coreg, taken for my heart, is zapping my energy? The answer from my doctors? — “Well, it’s hard to say. It could be one or all.  It’s not an exact science but more of a trial an error….”


But isn’t medicine, a science? Shouldn’t it be exact? Shouldn’t all the tests result in some telling news? Aren’t there research papers and clinical trials to extract useful information from? Don’t the milligram measurements of the drug dosage mean something?

“But everyone is different.”

This is what’s so frustrating.  To experience so many debilitating symptoms and to travel down so many paths with various specialists, only to end up with murky diagnosis and even a more hopeless plan of attack. 

I have worked with a neurologist for my dizziness, vertigo, numbness, tingling, pins and needles.  I feel like I am walking on glass, like my leg is wood and I have fire ants crawling all over it. I lost sensation throughout my body, especially below the waist.  My tastebuds are shot.  So I had various tests, including MRIs, only to find out there really wasn’t much to be done.  So I suffer.

I went through similar journeys with my cardiologist, pulmonologist, and physiatrist.  Currently, I am meeting with a gastroenterologist to find out why I have so many GI issues — vomiting, nausea, dizziness, headache, diarrhea, constipation, abdominal pain, indigestion, gas, heartburn, bloating, and urgency.  So far, I have gone through an endoscopy and a colonoscopy, and no answers.  While we will keep exploring, the answers could be that these symptoms could be caused by lupus; another illness such as gastroparesis; as a side effect of a medication I’m taking or all of the above.  None of these answers seem to point me towards relief. 

When I was diagnosed with thyroid cancer, I went to my ENT surgeon and got a thyroidectomy.  When there were some lingering cancer cells, I got radiation.  Problem detected.  Problem solved. Done.  Even though it was a hard time for me, it was also nice to have an illness that could be identified and dealt with.  With lupus and other chronic illnesses, I have it forever and it’s almost to impossible to manage. 

2 thoughts on “Three Buckets 

  1. “But isn’t medicine, a science?” Sure it is. And we are the experiment. 😦


    1. Unfortunately, we are the guinea pig and it really sucks!!!


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