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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


“You are my strength, I watch for you; you, God, are my fortress,” Psalm 59:9 (NIV) 

This week I have been exhausted. No amount of going to bed early will help and coffee won’t do the trick. Sometimes this is just life with lupus. I have only known about my having this disease since May but the process of finding out what was going on with me began back in January. I started to notice that my fingers would turn bright white and go numb when I was cold. When I am saying white I mean stark white and it would take a solid 10 to 15 minutes before my fingers would turn back to normal. It was really alarming and I wasn’t sure what was wrong so I took a picture of them and posted it to Instagram and then I took that picture and showed it to my family doctor. At that point we began the process that lead me to my diagnosis. So many things that I have struggled with began to make sense as they were signs of my lupus yet I was unaware and by themselves they seemed harmless enough to not got to the doctor. But even then there were things that I had gone to the doctor for and it was missed, like several years back I went to the ER for chest pain and it was said that I had inflamed cartilage causing the pain but in fact it was my lupus. My symptoms were wide-spread at first so they were not being noticed and lupus is a disease that has times where it is active, flare ups, and times of remission so it wasn’t until this May that I learned what was truly going on with me.

No one wants to hear that they have a disease that they will have to deal with for the rest of their life. It stinks! But at the same time I can’t focus on that! I may not know the reason behind all this, but it is the road that has been set before me. During the long months of waiting I had no idea what was going to be determined and I had my moments of worry, but I truly believe that God gave me the strength to not focus on all the “what ifs” that were so easily there. I felt his presence during this entire process. He has a plan for us all, we may not understand that plan and guess what… that’s okay because it’s in His hands.

Every day looks different. There are good days and bad. And sometimes I have to remind myself that it’s okay to have a bad day.

Every flare up looks different.

Today, and this week I have struggled with fatigue, but tomorrow is a new day.