I got a call from a dermatologist's nurse reporting that my skin biopsy came back positive for SLE. It took four more weeks for that biopsy report to travel across the parking lot to my rheumatologist's office in order to get the diagnosis confirmed.
My initial response was not pretty. (Lupus Meet Loretta, Loretta Meet Lupus)
And my later reaction to prognosis was worse.
I pushed and pushed my rheumatologist to tell me how bad this was going to get. Was I ever going to get better. What's next for me.
His responses were vague, which left me feeling unreassured.
He told me what to expect regarding treatment regimen, and tried to link me up with the resources I would need to maintain what health I still had.
I was so upset that I did not realize that he was being kind.
Now let's rewind a bit.
A few years earlier, I was sitting in the office of the Director of Psychiatry at the outpatient mental health clinic where I worked. I was a social worker and I had come to talk to our psychiatrist about my concerns in treating psychotic patients.
You have to understand that true full blown psychosis (loss of touch with reality) is not that common. About 1% of the general population may suffer from psychosis. Quite often there is a treatable medical condition that is causing the psychosis.
So... only about 2% of the clinical population (people who come in for mental health services) actually have psychosis.
That means that for a newer social worker like myself, I hadn't seen too many cases.
And I was feeling tugged in so many directions because the patient and the families were often buried deep in not knowing how serious psychosis can be.
I felt a moral obligation to let patients' families know how serious the outcome could be for psychosis. I was well meaning, but inexperienced.
So I consulted with our team psychiatrist, a person whom I deeply respected. I wanted to know how to talk with families without causing harm.
He had this piece of advice:
"Tread lightly on people's dreams."
He explained to me that the worst thing that could happen was not necessarily going to happen.
And that I should never trample on someone's hope.
Our patients were young.
They had dreams for the future and their families were holding tight to hoping for as normal a life as possible for their loved one.
The doctor was correct.
Only in years of hindsight could I learn the wisdom of his advice. Some people stayed stable (not healed, but stable), some were able to do better than expected, and yes, some did worse.
But, if I had dumped on people the worse possible scenario, I could have easily stomped down the dreams of the patients who were able to manage better than expected.
Back to being diagnosed with lupus.
I stopped getting angry at my doctors about the vagueness of their responses.
I think I get it now.
They can not promise sunshine, lollipops, and roses...
and they can not promise that this disease will kill me quickly, slowly or not.
They can't tell me if I will some day be on dialysis.
They can not tell me if I can be cured.
But, heck, they're brave enough to commit to a profession in helping people who live with a very uncertain future.
Now, that has become good enough for me.
One consulting physician put it to me like this... "Loretta, if you have something in your life that you really enjoy doing... DO IT! For God's sake, don't worry, and don't feel guilty for pursuing what makes you happy."
Good advice, doctor.
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My writing about lupus is transitioning. And I wanted to let readers be aware of the upcoming shifts.
I am now four years into living with lupus and have now gone through the worse part of grieving. I am stretching out and learning to live beyond the daily struggles with lupus.
I will be tackling a topic that I have avoided thus far, which is alternative approaches to coping with lupus.
I will be focusing primarily on the emotional and spiritual aspects.
People need to know that I have experienced and witnessed much harm caused by fervent believers in a diversity of spiritual paths.
When you have a chronic disease such as lupus, it can often feel like you have become an "advice magnet". I would love to get money for every time someone well intentioned or not told me what to do with myself.
I want to have an open forum here.
I would love people to share their experiences and to use that to educate us all.
But, there will be ground rules:
#1. Tread lightly on people's dreams.
#2. Do not lecture me or anyone else about our spiritual path (or even lack thereof).
There is a BIG difference between sharing and telling someone else how they "should" live their lives.
#3. Please do not use my blogs or this MySpace profile to sell stuff.
#4. Be sensitive to the reality that many of my readers are newly diagnosed. Don't mislead them.
And at any given time some of my readers may be suffering organic brain disease from the lupus, a lupus flare, or they are just emotionally raw from suffering so much... be kind, be gentle.
So... I will be hopping into uncharted territory (as far as my writing is concerned)... hope you all decide to join in!
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