Thomas the Train & Lupus the Pain

By Anne1

2 min read

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."

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Racquel H. Dozier Moderator & Contributor
<inline-mention username="Anne1" user-id="4735979"/> I can totally relate to everything you have said. With all of the issues I had to stop working at an early age. It was a complete blow to my ego but so important for me not to kill myself. It’s so hard to detach from things that have been a part of us for so long. It is a big adjustment not only in physical ways but in our mindset as well. I also felt like all would be lost if I stopped working. You are right that “I think I can can” be a motivator. I still say that to myself a lot. It helps to move me. We do have to relinquish to rest more often than we plan to. I want to send you gentle hugs. I know it’s difficult to make the decision to stop working. You have to do what’s best for your health. I have found that out of necessity comes creativity and if you do have to stop working you will find other ways to give without having to compromise who you are or your health. Thanks so much for sharing this. You are surely not alone. ~Racquel ~ lupus team member
missdesignerbabe Member
hello. My name is Carey, but everyone just calls me Miss Carey. I am writing a book from my personal experience with Lupus and would love to get your thoughts as well. I would love to pay a tribute to you in my dedications page. Keep fighting sweetie!
1. GabbyFormica Community Admin
 <inline-mention username="missdesignerbabe" user-id="8399274"/>, Good luck with your book! So awesome to see lupus warriors sharing their story with the world! Gabby (team member)
missdesignerbabe Member
Thank you very much doll! I really needed to hear that. As you know it is a struggle to do things with lupus and writing a book is no different. I actually have to work harder than other because of Lupus. It is nice that I have support for this. God bless!💜💜