Archives For diagnosis

The following is a guest post by Mandy Karo. I first met Mandy in college when we both joined Pi Zeta Phi during college. After hearing about my diagnosis Mandy reached out to me as she is also living with Lupus. I am so thrilled to have her share her story. She has wonderful insight, show her some love! 

Middle school is a tough time for most kids. When I was in eighth grade, I was in the midst of a very difficult transition with my two best friends. We had been inseparable in fifth, sixth, and seventh grade. I remember the gym teacher saying weMandy's guest post were “joined at the hip.” But in eighth grade, they were drifting away from me and becoming a part of the popular girls group. For a young teen this felt like the ultimate abandonment and rejection. I remember feeling a lot of loneliness, stress, and anger. It was in the middle of this drama that something much worse was piled on to make my teen years even harder. I was diagnosed with Lupus.

I had been having odd symptoms for a while. In sixth grade I started having strange stomach aches. The doctors thought I might have ulcers so I had to have a stomach x-ray. It was awful—the stuff you have to drink so they can x-ray you is disgusting! There were no ulcers found so life went on. In seventh grade I began feeling tired in the afternoons. But what happened in eighth grade was what led to my diagnosis. I started getting purple spots on my feet and ankles, especially when I was upset or stressed out. My feet and ankles would also swell up. At first we thought maybe I was allergic to the laundry detergent my mom used but switching it didn’t help. The worst time was when one of my teachers accidentally ran over my ankle with a TV cart. The purple spots showed up and I got so swollen I couldn’t walk on that foot. It hurt to put shoes on.

When we showed my family doctor the spots, she was perplexed so she looked up what it could be. She named off a number of possibilities and one of them was Lupus. I really had no idea what Lupus was, but I had heard the name before, and I knew it was some sort of serious disease. I started to cry. We were sent to Children’s Hospital in Denver to see a rheumatologist. They did blood work and the doctor asked me a few questions about my symptoms. Then just like that, he told me I had Lupus, gave me some packets about it, and prescribed medications for me to take. It felt odd that it was so quick. Even my parents continued on acting normal. Didn’t they know that I was just diagnosed with an awful, potentially life-threatening disease? Shouldn’t we all be crying or yelling or something? I know that they were just trying not to freak me out. Inside they were scared too.

I’ve been diagnosed with Lupus for thirteen years now. I deal with fatigue, unexplained fever, swollen joints or muscles, sensitivity to the sun, susceptibility to sickness, and the spots (which are called purpura and are caused by bleeding underneath the skin). The medication I take has helped me in controlling the flares. I know I am actually very lucky because many people with Lupus have much worse symptoms, and thankfully my symptoms are not life threatening.

There are a lot of questions that come with having Lupus. Will my symptoms get worse? Will I be able to have a healthy pregnancy? Will I have the energy for a full time job? Will I have the energy to raise children? Will the men I date be able to handle the fact that I have Lupus or will it make them want to head for the hills? The real question becomes, what do I do with all of these fears and anxieties?

When any sort of fear comes into our lives, no matter what it is, we must remember the power of God. God is bigger and stronger than any scary thing that looms in our path. Just imagine the universe in its incredible vastness and remember that God created it! That is power. Then remember that he loves you. When something bad happens in life, we might be tempted to ask if God loves us. If God loves me, why did he allow me to get a disease? But that question is focused on the physical, and God focuses on the spiritual. Yes, bad things happen on this earth. But God allowed his son to die for us in order that we might have a new life. That is love. This world is temporary, and we must use the struggles that come with it to strengthen our relationship with God.

The Four Year Confusion

December 15, 2012 — Leave a comment

Did you know that Lupus gets misdiagnosed so often because the symptoms are so wide-spread and they resemble many other illnesses? This reason alone is why it can take so long to get a true diagnosis with someone who has Lupus. After getting my diagnosis I now realize that so many of  the problems that I had were due to my Lupus yet I was not being diagnosed properly. The first instance that comes to mind was just after graduating college. Chase went to a movie one night and I went to bed early. I woke up in a panic in the middle of the night with severe chest pain, I could hardly breathe, my chest felt like it was being crushed. I could have sworn I was having a heart attack, I was only 22 was that even possible? With me being a worrier I kept feeling like it was getting worse I turned on the TV and tried to get my mind off of the pain in my chest and hopefully distract myself until Chase got home. This went on for days. Finally I went to the E.R. one afternoon and after several tests they managed to come back to me with a diagnosis of inflammation. Take ibuprofen and see a family physician was all they would say. Leaving the hospital I was less than satisfied and I didn’t believe that they had done everything to insure that was really what was happening.

This was four years ago! The past few years I had to take ibuprofen, which never helped, and just continue to wonder what was going on. It is so frustrating knowing that something doesn’t feel right yet you can’t seem to find anyone who will listen or even a way to describe just what you are feeling! I started to get to the point where I felt like this was just normal, maybe my chest is supposed to hurt all the time and maybe it is supposed to feel like someone is pushing on my lungs and keeping me from breathing easily. I got to the point of believing that this was so normal that even after we found an incredible family physician I didn’t even say anything to him at first. I mean why should I, after all I was fine! Eventually the pain worsened and the increase in feeling like I couldn’t breathe continued, so I made the appointment. I had such a hard time even describing what I was feeling like because I had become so accustomed to it. The first thought was asthma since I went in mostly talking about the breathing part of my problem and so I tried inhalers for a while. Then after going in later down the road with my fingers turning white he issued a blood test which then brought me to the specialist.

In my first appointment at the Rheumatologist office we talked about my health history and when it was brought up about my chest pain he asked the question that I had asked myself for four years, “but why is there inflammation in your chest?” Of course now we know it is due to my Lupus. It was such a relief to have a family doctor who saw the need for a blood test and a specialist who was able to finally give me my answers. It is never easy to know that something isn’t right yet you have no answers. There have been times that I look at how “quickly” I was diagnosed once I went in April, but only now do I realize that my journey actually began four years ago.


Photo Credit: Demi-Brooke