My Journey to Being Diagnosed
I woke up one morning with muscles and joints stiff as a rod. My neck and throat were so heavily inflamed that it hurt to swallow. I had a debilitating head ache that made it hard to concentrate. This would soon become a daily occurrence due to the chronic illness Systemic Lupus Erythematosus.
Figuring out the diagnosis was an exhausting and painful three years that consisted of several misdiagnoses. It all began back in May of 2013 while I was serving in the United States Army. My lymph nodes became so enlarged and swollen in my neck, I could barely eat or swallow. It was the most painful experience I had ever dealt with. Eating became a daily struggle because it was difficult to eat solid foods. I then realized I was losing weight, which was a serious issue since I have always been considered small for my height. My hair was falling out, and I was having difficulty walking due to chronic joint pain. The doctors had no clue as to what was going on, or where to begin. The first few times visiting the doctors, they swore to me it was strep throat and continued on prescribing me unnecessary medications that were making me severely ill.
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| The rash I developed during a flare up. |
The doctors came to the realization that it was not strep throat that was causing my health issues. That is when they made the decision to run some blood tests and refer me to an internal medicine doctor. Since being in the Army, I was still required to wake up everyday at 6AM and conduct physical fitness training and work long days. The stress of being sick and being required to work such long days really took a toll on my body. The only reason why I was sent to an internal medicine doctor, was because the Army doctors were at a loss for words and had no idea as to which step or action they should try next.
After my initial appointment with the internal medicine doctor, he decided to run a few more blood tests hoping it would narrow down the issue. Unfortunately, it made my case even more confusing. Numerous of my blood test results were either spiked, or super low. Since my blood cell count was off, the doctors began to suspect a cancer. My heart was broken, I was only 20 years old and I was convinced I was about to die. I was so convinced I was dying because my body literally felt like it. Each day was a struggle, and several times I would tell someone, "I feel like my body is giving up on me, I feel like I'm dying." I was in so much physical pain, I could not even find the strength to walk to the bathroom. It was difficult to articulate to the individuals around me about what I was going through. I felt as if no one would understand me, that they would claim I was lying or a hypochondriac.
The Internal medicine doctor referred me to the gynecologist and to an ENT doctor as well. The gynecologist ordered an ultrasound and mammogram test because I had some lumps in my breasts. Before receiving the results, the doctor diagnosed me with breast cancer. During this time I was beginning a relationship with my boyfriend (now husband). The amount of worry that was racing through my mind was overwhelming. I had no idea as to how I could break this horrible news to my new loved one. Luckily, the doctors eventually figured out it was not breast cancer, and then swore it was lymphoma. The lumps inside my breasts were several swollen lymph nodes. My cervical lymph nodes inside my neck were so enlarged, the doctors had to remove one in order for me to function properly. My right cervical lymph node was 5 cm enlarged, and my other lymph node was 3cm. Normal lymph nodes should be 10mm, or 1 cm in size. I underwent emergency surgery to remove the lymph node, and was hoping this would cure all of my health issues.
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| The result of too much sun. |
After the surgery, I started to feel like myself again. The surgery was in September of 2013, and was able to feel like a normal human being for a short period of time. Unfortunately, the pink cloud was short lasting and I progressively grew ill again. The doctors were unable to figure the diagnosis yet again, and this is where several ridiculous misdiagnosis began. It was January of 2014, and for an entire year they ran tests and conducted several procedures hoping to pinpoint the issue. This was the longest year I had ever experienced. I felt as if this was a never ending issue, and eventually I was going to die from being mistreated. The misdiagnosis started at celiac's disease, and ended with fibromyalgia. If you can think of an illness, I was most likely misdiagnosed with it. It was a never ending cycle, and I was steps away from severe depression dealing with it all. After being hospitalized numerous of times, and breaking out in a butterfly rash, the doctors finally referred me to a dermatologist. The dermatologist was the light at the end of the tunnel, and I am so grateful for god placing an intelligent doctor on my team. He took 3 different biopsies of the rash and sent them out to several different labs to be tested. The test results came back as possible lupus, and I was finally referred to a rheumatologists.
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| The mask I wear when my immune system is weak. |
As soon as I began to see the rheumatologists, it all finally started to fall into place. I found out that my lupus is photosensitive, so sun exposure causes me to become very sick. Thankfully, the dermatologist informed me about a couple of different types of sunscreen. Zinc Oxide and Titanium Oxide are ingredients that physically creates a barrier from the sun. Ever since this diagnosis, it has taken over my life in every aspect possible. Every day I wake up not knowing how I am going to feel. I have my good days, and sure enough I have my bad days. Since being diagnosed with lupus I was unable to finish my career as a soldier in the United States Army. I am now thankful for everything I have been through since it has transformed me into a better person.
I have started making life long changes for the better, and I am excited to share these changes with you all!
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