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Julie’s Fight Like a Girl Story (Lupus, Sjogrens, Raynauds)

Purple RibbonI am the 25-year-old mother of a beautiful 2-year-old boy. My symptoms began when I was about 16, and I started losing large amounts of hair. The year after that, I was in and out of the hospital several times because my tonsils would get so enlarged that I couldn’t breathe, and I would just feel so sick. I remember that the doctors had talked to me about their concern with some of my blood work, but I ended up getting my tonsils out and getting better.

Fast forward to when I was 21. I got pregnant with my son, and my hair started falling out again. I almost lost my son, and was told I only had a 50% chance of him making it through the pregnancy due to a subchorionic hemorrhage. I felt awful throughout my entire pregnancy.

Following my son’s birth, everything went downhill. I had mastitis five times and had to quit breastfeeding. More and more frequently, I would wake up and feel like I had been hit by a bus. I would always tell my fiance that I was sure someone had beaten me across the back and on my arms with a baseball bat. These stints would usually last for a day or two, and then I would be fine for a little bit.

It wasn’t until January 2014 that my life changed drastically. I thought I wasn’t going to make it. I was mostly bedridden for about two months, when I wasn’t going to the hospital or doctor’s appointments. The first rheumatologist told me she thought I had Fibromyalgia, even though I didn’t have any of the pain points. But it wasn’t that. Then my mom got me an appointment at Johns Hopkins, and that is where I was diagnosed with Raynaud’s and Sjogren’s. After my blood work came back, I was diagnosed with undifferentiated connective tissue disease (UCTD) with probable lupus. I have several family members with lupus, and our symptoms and flares are identical. My doctor informed me for insurance purposes that I should stay under the UCTD diagnosis for as long as possible, but put me on Plaquenil and a course of prednisone. I am now on Plaquenil, Neurotnin, Effexor, and tramadol as needed.

I struggle every day. I feel so isolated. I have been in counseling every week for over a year now, but I still can’t seem to come to terms with what has happened to my life. I used to be so physically active, and I loved running and horseback riding. I somehow managed to finish my bachelor’s degree and am now working on my master’s, which I know I need to be thankful for. I just don’t know how to move on from here. I have tried modifying my diet to no avail.

I saw this website with so many women who are so strong, and it made me want to be a part of it. I know I don’t have an official lupus diagnosis yet, but I hope I am accepted in this group because I feel like this is the only place where I don’t feel so different. Thanks for reading, and any feedback from anyone who has gone through this type of thing would be much appreciated.

Thanks!

Julie
Pennsylvania
Submitted 08/03/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

One comment

  1. Oh Julie, I literally just was diagnosed with Lupus this week. I have been doing a ton of research and looking for others who are goign through the same thing. I know someone who is actually taking a form of Chemo to help her symptoms. Unfortunately, it seems as if it is so different for everyone. I wish you the best.

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