Welcome to My Story

Jen's Life with Lupus is a story of my life with a disease called Systemic Lupus Eythematosus. My goal is to raise awareness of the disease and hopefully let someone (even just one person) struggling with Lupus know that they are not alone in this fight. Lupus is an individual disease which affects each person differently. Medication and treatments are specific to an individual's Lupus therefore, i can only share what worked for me and my Lupus.

The story was supposed to start from the when I first noticed something was wrong but there have been some health changes recently so we are starting with my current state of Lupus.

A few weeks ago, I developed a strange rash which was flat and red in appearance with no itching. Unexpected things tend to happen with Lupus it was not concerning to me at that time. I took some over the counter antihistamine and went about my day as usual. The next day, the rash it spread everywhere and a low-grade fever developed. Again, this was not too concerning so I continued with the antihistamine and Tylenol for fever. However, there was no controlling the fever (105) on the third day so the decision was made to get help at the emergency room.

My hear rate was beating too fast (tachycardia) in the emergency room (ER) then plummeted once the fever broke to be extremely too low (bradycardia). The ER physician treated me with three antibiotics then was admitted me to the cardiac care unit with septic shock. Infectious disease doctors were brought in to determine what caused the sepsis (still undetermined) and a rheumatologist was assigned because this event cause Lupus to flare. A flare is when stable Lupus decides it wants to join the party and play a role in whatever event may be happening. This holds true for medical or social events but we will talk more about that later.

While in the hospital, Treatment consisted of high doses of prednisone, antibiotics, and lots of fluids to keep the fever at bay. But, Lupus had others plans. When it joined the party, my fluids stopped flowing through as fluids are meant to do so built up inside me causing everything to swell from fingers to toes. Prednisone also causes excess fluids. The excess of fluids had caused my blood count to drop to eight (normal is twelve to fourteen) since it was being diluted by IV fluids (maybe). The fluid also put pressure on my sciatic nerve (low back) causing pain to radiate down my legs making it very difficult to walk. The fluid also pooled in my lungs and between my ribs causing my upper back to spasm which was extremely painful and made it very dificult to take a deep breath. There was one day where both the upper and lower back were spasming at the same time. There are no words to describe to describe the pain but it was scary for me, my roommate and my poor husband who had to watch for two hours as my back moved uncontrollably. Thankfully, the doctors were able to get this episode under control and eventually stopped the IV fluids. A very large dose of a diuretic called Lasix was given which helped the majority of the fluid out within about a day though am still working on getting the remainder out of my system.

My stay at the hospital was a short five days and I am grateful for all who assisted in the event. Although, the event is not quite over for me as there is still a list of homework to do.

My primary care physician was the first on the list who gave referrals for the six specialists that will encompass my future care. A CT scan was performed in the hospital which showed sphenoid sinus disease so an ear, nose and throat doctor will be the first doctor on the list. A CT of my chest showed pleural effusion (probably caused by the fluids) so a pulmonologist will be the second doctor with a follow-up CT scan in a few days. A Tuberculosis test is also required and if still positive, an infectious disease doctor will be third (could be false positive which is something else that happens with Lupus). A hematologist will help determine if the blood count was due to the excessive fluids or if there is something else going on. My blood count has always been low so this one is last on the list but the list goes on.

The good news is that I am getting stronger every day. The fluid is dissipating slowly as a wean myself off of prednisone and there are plans in place to get these issues sorted. I will share my current state at the beginning of each post then tell you the rest of my story.