My chronic health journey is super complicated. When I first started experiencing my symptoms I wouldn’t tell anyone what I was feeling. I would wake up feeling very achy, sort of like I had worked out really hard at the gym, but I didn’t. Initially I brushed it off thinking it was going to go away… but it didn’t. I was also 27 and had older friends who were like, “Once you hit 30 your body is never the same.” So, I thought this was just part of getting older. But my joint pain progressively got worse, to the point where I couldn’t open doorknobs, do my makeup or write my name. Walking became so painful too that elderly couples with canes were walking faster than me.
I turned to my PCP for some advice but because I was young, my symptoms were invisible, and I looked “fine,” she brushed it off and said Tylenol and exercise should help. She was my doctor, so I took her advice. But none of that worked and it got worse. I started having chest pains, shortness of breath and my feet and my legs were so swollen. Now that my symptoms were clearly visible, I went back to my PCP and demanded that she look into this further. She then referred me to a nephrologist, hematologist and eventually a rheumatologist. After many blood vials and scans they finally diagnosed me with lupus.
When the doctor delivered the news, she felt so cold and all I could do was cry. I knew something was wrong, but I didn’t want it to be this. A chronic illness with no cure. At the time I had no idea what lupus was. All I knew was the pain. It felt like a death sentence. I was in such denial and decided to see 2 more rheumatologists. Maybe the first one was wrong. But they all came back with the same results.
No one in my family had any autoimmune diseases. So, this was all a shock. I had so many emotions. I kept thinking “Why me?” What did I do to deserve this? I was only 27 and this was supposed to be my year. I didn’t want to be the “sick” girl. I didn’t want to be a burden to my loved ones. I didn’t want them to constantly worry about me.
I started off with Plaquenil and prednisone and I saw results within weeks, the first being the swelling. I was finally able to fit into my own shoes. The joint pain had also subsided. But the chest pain and shortness of breath was still there. The protein in my urine was still high as well. I eventually had to get a kidney biopsy and luckily, I was only at stage 2. They told me I was lucky that we caught it early.
I really believe it was because I’m in NYC that it was much easier for me to obtain appts and see specialists compared to other states. I know on average it takes 6 years to get a diagnosis, but I got mine within months from when I started my symptoms. I look back and think, “What if?”
What if I was taken seriously the first time? Could I have prevented my organs from being damaged?
It took a lot of trial and error to figure out what worked for my body. They decided to add on CellCept and losartan and again trial error figuring out the right dosage. I sort of plateaued and my lab values became my new normal. I stayed on that regiment for a couple of years and when my husband and I got engaged and were thinking about a family we discussed weaning off the medications since the medication would pose a risk to the baby. Once I was off the meds, my labs weren’t looking as good, so they decided to put me on Imuran, which was safe for pregnancy.
A few months after I got married. I found a lump in my breast. Thankfully it was benign but because of the size I needed surgery. A few months after my surgery I started experiencing new symptoms of dry mouth and found a lump on my face near my parotid gland. I thought maybe I was flaring and this was just a side effect. I told my doctor, and we tried prednisone to see if it would help. But it didn’t work so I was referred to a head and neck doctor who did more blood work and ordered an MRI. The MRI results was consistent with Sjogren’s. They recommended a FNA biopsy to rule out lymphoma. Unfortunately, the biopsy determined I had Non-Hodgkins lymphoma. We also did a core needle biopsy to verify, and the results were the same.
Again, I went into denial and got a second opinion from at another institution. But the results were the same. I began 4 rounds of Rituxan and thankfully that did shrink the tumor. Currently I’m on the wait and watch protocol along with the Plaquenil and Imuran. This chronic illness roller coaster journey has been so hard. But I’ve learned that my diagnosis will not define who I am.
I am very thankful for the support that I have found through my family, friends and online community.
Social media has also been a great avenue to meet other warriors who have lupus or other autoimmune diseases. When I first got newly diagnosed, I joined a few Facebook groups and asked a bunch of questions and loved reading other people’s experience. It was great knowing that I wasn’t alone. As much as I love my family and friends, I sometimes felt that I couldn’t be 100% with them. They were healthy and I didn’t feel that they could really relate to what I was going through. My fatigue was not the same as their fatigue. They weren’t experiencing the brain fog and taking so many pills a day. Even though these people online were strangers, I still felt very connected to them. I was at a stage now in my life where I fully accepted my diagnosis and wanted to embrace it and share my story with as many people as I could.
