The Neverending Process

First, I had uncontrollable chest pains, difficulty breathing and a stabbing sensation in my chest. This lasted about 2 weeks and no one knew why. I have an abnormal heart rate and EKG each time. I was sent to a cardiologist who was irritated a young healthy to say women was sitting in his chair for no apparent reason. I was hooked up to a heart monitor which all came back normal. How can it be normal? How can everything that I have been feeling be normal and there are no red flags?? All I kept thinking was I was never going to find help. I’m never going to be able to find a Doctor to take me seriously. 

I am fortunate because during all of this I was working in the ER and my mother is a nurse there. All of these nurses and doctors, well most Doctors took me seriously and fought tooth and nail to determine what was going on. I cannot imagine how I would have gotten through this without their support. 

After failure time and time again from each specialist some genius decided to order extensive blood work which low and behold shows inflammation almost everywhere. Elevated rates substantially. I was finally referred to a rheumatologist who was able to determine I have Lupus along with a few piggyback diagnosis’s. 

Although determining what my diagnosis was stemming from several symptoms like chest pains, shortness of breath, nausea and vomiting, and much more it was just the beginning. 

Lupus has no cure. It affects everyone differently and no two people can be cured the same. Trial and error are how the doctors preform treatment. I have been in and out of the er, and the Drs office due to reoccurring flares. Still 3 months after my diagnosis it is not under control and they are still determining a treatment plan for me. I have been referred to other facilities for second opinions and still no relief just more bad news. 

At this point my friends and family try to be understanding but I can see the confusion. I can see how they are worried that it’ll be this way forever. I am now considered and unreliable employee and have had to file for FMLA. I can’t help but feel guilty when I get sick and I do have people in my life in which have become limited time seeing or talking to because they don’t understand and think this is something that can be easily cured with other methods. 

  

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The Diagnosis

I am fairly new to the Lupus community. I was diagnosed July 9 of this year. It was a long and tedious road of determining what exactly was wrong with me. Getting a diagnosis was overwhelming but at the same time a relief. I knew that I was not crazy and there was other things actually wrong with me it wasn’t in my head like people kept telling me. I was told numerous times I was drug seeking or having anxiety. 

How do you go from being a perfectly healthy early 20s to a pain ridden aching tired and confused person? I still will never understand why or how all of this happened but I am determined to make the best of all of this. 

I have an awesome support group but when they really don’t understand what is happening it can be diminishing sometimes. 

I am writing to you to help you understand there are people out there that know, feel, and understand what you are going through. It’s good to know that someone is there and understands you. This isn’t something that can be cured and over with in a few weeks this is a life long chronic illness and you’re not crazy, you’re not alone, and you are heard! 

Stay positive bloggers! More to come!