Thomas the Train & Lupus the Pain
Last updated: July 2022
Every day I tell myself "I think I can." I am now 62 and was diagnosed with lupus 28 years ago.
Working while living with lupus
I've seen on here a number of stories from Nurses and other health professionals about their lupus battles. I am a respiratory therapist with 42+ years of experience and the last 2 years of covid have been hell on earth for health professionals, to put it bluntly. I am still working, although I question that decision on a minute-by-minute bases these days. Every day when the alarm goes off I tell myself "I think I can." Lately that is followed with "Really?". I have been in a flare for over 3 months now and hospitalized 2 times. I get through it and go back to work. I am continuing to work out of necessity and the love of my profession. It's just not the time to step out of healthcare for me.
Fighting through the fog
I fear that day is closer then I want to admit, as the "brain fog" is the worst it's ever been, that I will need to give up my career. I have CKD stage III, Neuro Vasculitis and many other issues that come with the disease. I look to the stories on this site for encouragement. What used to take me seconds to react to now is a focused mental struggle. Tomorrow I see the doctor and I just want to say, what do we have to do so I can continue working? I know in my brain that cutting back could help, but my brain says don't entertain the idea because you will waste away. Lately, most days end in a massive amount of physical pain and fatigue. I had one rheumatologist, about 10 years ago tell me "lupus is not a painful disease." I cannot repeat here what I said to him but it sure made me feel better.
"I think I can, I think I can..."
I have an amazing team of doctors who do their best to keep me going at this age with this disease. Most days I just say I give. If you knew me you would know how uncharacteristic that is of me. I bring my self back to Thomas the train cartoons watched with my great nephew and just repeat, " I think I can, I think I can." So for now I will repeat that to myself and soldier on as I hope those of you who are ready to give up can do. Lupus is a fight for your life and you are worth it so just say 'I think I can, I think I can."
How are you most likely to respond when someone offers you unsolicited advice about your lupus?