That We Might Have Joy: Ann's Story

Writing about my life is one of the hardest things to do. It actually makes me think about all my triumphs and pitfalls of the diseases that I had no choice in having. I am leaving a lot of experiences and journeys out during this, but if I didn’t, this would get wayyy to long. One of my most unforgettable journeys is this specific experience:

My boyfriend at the time, husband now, was watching a movie at his house while we were away at college. I started feeling this unbelievable amount of pain in my shoulders. I didn’t think anything of it, so I just had him massage it and thought that I was sitting the wrong way. A couple hours later, I couldn’t raise my arms because of the amount of pain. A while later, he was dropping me off at my dorm, and I had to miss out on a friend’s birthday because of the amount of pain I was in. I didn’t know after crawling into bed, that I would be there for about a month. That was a month of classes that I missed. That was a month that I had to physically move my legs with my hands. That was a month that I had to let swallow my pride and let my roommate take care of me. That was a month that I had to let my boyfriend do the simplest things for me, because I couldn’t move my wrists. I just knew deep down that there was something wrong, and it wasn’t the normal “wrong.”

My mother, who was 75 miles away, was my lifeline to get into a new Rheumatologist, because during that month, they decided that I could no longer go to pediatrics. I finally got into a Rheumatologist who I am grateful for to this day. I would be dead if it was not for her. She had viewed my case and wanted to do blood tests for the disease called Lupus. We had heard the word Lupus, because my mother kept insisting my doctors test me for it, but they always said they didn’t come back conclusive. Well this time, this doctor knew a little more than the previous one. These tests didn’t come back with certain factors that fall into the Lupus category, but I had all the markers for Systemic Lupus.  This disease is one of the hardest things to explain. Everyone’s Lupus affects him or her differently. My lupus isn’t the same as my other “lupie” pals. I have a red butterfly rash that runs across my face, but the majority of my lupus affects my muscles and my blood. The lupus created something called APS, or anti-phospholipid syndrome. Oh great, what is that? It’s sticky blood. Due to this, I am more likely to have miscarriages or blood clots. I have to take baby asprin daily until I get a blood clot. If I were to get a blood clot, I will have to take a stronger blood thinner.

I am 23 years old and I have Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome, APS, Raynauds phenomenon, Crohn’s disease, and likely more, but I don’t want to know. My parents gave me the best childhood that I could have ever wanted with my circumstances. I know they struggled with having to watch their child suffer. During those years I have lost faith, and I have gained faith. When I first got diagnosed, I always said, “If God were real, why would He inflict so much pain on a young child who has done no wrong?” It took quite a few years for me to realize that He gives pain to those who need it the most. If I had not became sick, I wouldn’t be the strong-minded person I am today. I wouldn’t have made so many friends that are going through the same trials as me. I have learned how to deal with prejudice, but better yet, I have learned how to speak out against it.

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