Living With Lupus and Other Diagnoses
Getting a lupus diagnosis was hard enough at the age of 27, and looking back my doctors never prepared me if other diagnoses could follow. I don’t know if they didn’t want to scare me or they thought because of my age I was too young, if the likelihood was very slim so it wasn’t even an afterthought.
I was never counseled about what could happen. Not informed that because of my lupus or the medications that I was taking I was more susceptible to XYZ. No support groups were offered, not even a pamphlet was given.
Everything was fine, until it wasn't
I did a lot of research on my own though and it was very daunting and scary. I was at risk for so many things because of my lupus and the medications that I was taking. But at the same time, I just wanted the pain to go away.
I wanted to feel normal again.
I think I sort of just blocked those thoughts and put my mind into manifestation mode. Saying, it is not going to happen to me. My lupus will be under control. Everything is going to be fine. Until it wasn’t fine.
What works for my body?
It was a very bumpy road of trial and error trying to figure out which medications worked for my body. A few years in we finally found the regimen that worked best for my body. I never went into remission. I just sort of plateaued and my lab values became my “new normal”.
The medications that I was on were a big NO when it came to starting a family. So, that plan was put on hold. But, soon enough I was engaged. So, I talked to my doctors and they were okay with me weaning off Cellcept.
Things were really starting to look up from here and I was excited. But, after I got married was when things started going downhill.
New symptoms
2 months after I got married, I found a lump in my breast. I was only 32 and thinking the worst. After an ultrasound and breast biopsy, I was so thankful to find out it was benign. But because of the size of the lump, I had to get surgery.
The process took a few months and my body needed time to heal. Once I thought I was ready again, I started experiencing new symptoms of dry mouth and then found a lump near my parotid gland. Since lupus is related to Sjogren's we were all thinking I had that. After several doctor visits, an MRI and 2 biopsies, it was determined that I had Sjogren's and non-Hodgkins lymphoma.
Reacting to my other diagnoses
I don’t think at 33 I could have ever been prepared to hear all that. I think I was ready though for the Sjogren's diagnosis. It’s a “sister” disease to lupus and even other autoimmune diseases. But, to know that I had cancer was a punch in the gut.
I kept thinking, is it something I did or didn’t do? Why didn’t my doctors tell me or warn me about this? I know I read about it. But I didn’t think it was going to be me. I was now part of the statistic.
I was really numb and in shock. I thought my eyes were playing tricks because of all the crying I had done. It just couldn’t be what I read. I read it over and over. But, my doctors confirmed it and reality sank in.
Could things have been different?
I don’t know if things would have been different if my doctor had prepared me mentally more. Would I have agreed to some of the choices in the beginning? Would I have stuck to the medication plan? Would I have tried for a baby earlier?
I am now 34 and I replay things in my head all the time. Life throws so many curveballs and I know it’s bad to dwell on the past because you can’t change it. But, the what if's will always be in the back of my mind.
I am now learning again to live with my new normal and am still trying to navigate the next steps of my life.
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