A Better Understanding Of My Lupus – 2 Years Later

It’s been a few years now since my diagnosis and there is still so much I can learn, but here is what I can share with you.

Hi there! My name is Sara No H.

Back in 2017, I was diagnosed with Systemic Lupus Erythematosus (SLE) – more specifically Lupus Nephritis (basically meaning my Lupus attacks my kidneys). For those of you that don’t know what SLE is, it’s an autoimmune disease. In this disease, the immune system of the body mistakenly attacks healthy tissue. It can affect the skin, joints, kidneys, brain, and other organs. It really affects everyone differently so my symptoms can be greatly different from yours or someone you may know that has Lupus. Some of my symptoms when my Lupus first flared up were the red butterfly rash that spread all over my body, extreme edema, vomiting, diarrhea, a great amount of hair loss, immobility, and a few other things. 

You can read and see photos all about my first article on my Lupus here. 
My Journey & Life Experience With Lupus

It’s years later and things have calmed down, but there is still a lot I’m figuring out about my Lupus. I know that it seems like a long time to get things under control, but when it comes to your own body attacking itself it’s going to take some time. Sometimes the medication treatment will work and other times your body will just randomly start attacking something else. In my case, this did start happening to me. Over the summer of 2019, my Lupus flared up and starting attacking my blood cells. I specifically was diagnosed with Idiopathic Thrombocytopenic Purpura (ITP). ITP occurs when the immune system mistakenly attacks the Platelets in your blood cells. Platelets are the tiny blood cells that help your body form clots to stop bleeding if you end up getting a nose bleed or cut on your body. 

I found out I have ITP last summer when I went in for a routine bloodwork check-up and my Platelet counts were extremely low. A normal Platelet count is anywhere from 250,000 – 400,000. When my bloodwork was tested mine were at 13,000. I, however, showed no signs of having low Platelet count at the time so we honestly don’t know if it would have been found if I didn’t have that routine check-up. I was then rushed to the ER to get checked out to make sure the lab work wasn’t an error. The second lab results came in and they dropped even more within hours. At that point, the attending doctor decided it was best to admit me into the hospital to get me on a treatment right away and be kept under observation for the next 4-5 days. 

For the next 4 days at the hospital, I was monitored hourly and put on a treatment of Dexamethasone, a steroid to help treat my condition. It was given to me in high doses through an IV. Luckily with my doctors and nurses taking care of me, my Platelet count went right back up. They still don’t know why this would have happened, but it was safe to assume that it was just my Lupus flaring up. They also advised that I start seeing a Hematologists (a blood doctor) to make sure there was nothing they are missing. 

Since then I’ve been able to still go about my life and continue doing the things I love like playing Flag Football, Kickball, Soccer, I’m back on a bowling league, and I still get to do what I love every day at work.  I did have a small scare a couple of weeks ago (in January) where I was found unconscious at work and we found out my ITP was acting up and my Platelets significantly dropped to 18,000 again. Luckily since we know that the Dexamethasone treatment worked for me already I was able to do the same thing but with oral supplements this time. I will have to follow up with my Hematologists more frequently instead of just twice a year, but it’s worth it if it means I can still be around living life. 

I still make sure to follow my Tips & Tricks For Handling An Autoimmune Disease every single day. Some days a little more difficult then others, but you have to keep a positive attitude and smile through it because you are lucky you are here for another day. 

As always if you ever need to reach out to someone, I’m here for you. I’m not a doctor, but I am here as a friend if you need it. 

Love you lots,
Sara No H

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