I 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.
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.
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.