This one goes out to all my #LupusWarriors
Hi, my name is Sara No H.
(Here is a photo of what I looked like before the Lupus hit)
I am currently 26 years old and have been diagnosed with Systemic Lupus Erythematosus (SLE) & Lupus Nephritis. I first noticed symptoms of my disease in January 2017 at the age of 25. Lupus is a rare type of autoimmune disease. If you don’t know what an autoimmune disease is, let me help. Autoimmune diseases are where the body’s immune system attacks healthy cells. There are quite a few autoimmune diseases, so I will mainly stick to Lupus for now.
For SLE, my immune system is attacking its own tissues and organs, and to get into further detail I have Lupus Nephritis which means the Lupus is attacking my Kidneys. Specifically, they are attacking the Nephrons. The Nephrons in your kidneys are what filter your blood. They remove wastes and extra water, which then becomes your urine. By attacking the Nephrons, the damage causes the kidneys to be unable to remove the waste which can cause many problems.
First of all, when I first experienced any symptoms it was a long and very stressful journey to figure out what was wrong.
My symptoms included extreme edema (water retention), swelling of my entire body, weight gain.
(Here is a photo of when my face first started swelling. The doctors thought I had an allergic reaction)
I also a facial rash that eventually spread across my entire body.
The hair loss symptom probably hit me the worst. I LOVE my hair and losing it was the hardest thing I’ve experienced.
My Hair Before. It’s pretty thick and long, and I had a thing for dying it crazy colors.
My Hair After. As you can see it thinned out A LOT, and it kept breaking. So to help I wore a lot of hats.
Help I started a few different things.
(Here is a photo of when I started using Rogaine and taking vitamin supplements called Viviscal to help with the hair loss. I definitely saw an improvement.)
Luckily I was also able to purchase some Halo Hair extensions to help my self-esteem. These are probably one of the best purchases you could ever make if you’re losing hair, or just want something thicker.
More symptoms included joint stiffness, nausea, vomiting, diarrhea, and fevers. This was happening every day for months. Just picture yourself with an almost year-long stomache flu or food poisoning. It still occurs almost daily. I wish it didn’t but there is only so much you can do to help it.
Imagine one day waking up so swollen that you can’t even bend any of your joints, and you couldn’t even wear clothes or shoes that you could fit in the day before. It hit me like that.
(Here is a photo of how swollen my legs and feet would get. Yes, those are impression marks from my socks)
For a good 3 months, my whole body was so swollen and there was a point in that time where I couldn’t bend to put on my own clothes or even walk. This was a very difficult time especially since it was winter & I still had to work.
I was at the doctor’s office every week for almost 4 months trying new medicines and multiple blood tests to figure it out. They initially thought I was having a serious allergic reaction. By March of 2017 nothing was working and my doctor suggested I see a Dermatologist (the branch of medicine dealing with the skin, nails, hair, and it’s diseases) about the rash. They then decided it was best to do a small Skin Biopsy sample so it could be examined under a microscope to determine what is really happening. 2 Weeks later I got the results and they determined I had SLE.
Finding out that I had SLE hit me pretty hard, but I also was able to handle it surprisingly well. I overcame with joy to FINALLY figure out what was wrong with me for the last 4 months. Even though I just found out I had this life-long disease that will affect a lot of things for the rest of my life, it took a lot of stress of just finally knowing.
From that point on my Dermatologist had to determine what type of treatment plan to start me on, but there were a few things I had to do first. First I had to see an Ophthalmologist (this is the branch of medicine that deals with the anatomy, physiology, and diseases of the eyeball.) Fun fact, most diseases can be detected through your eyes, since they tend to attack that organ. Once my eyes were cleared healthy enough my Dermatologist put me on a treatment plan with a medicine called Plaquenil (which is an immunosuppressive drug). He then sent a referral to a Rheumatologist (a physician who specialize in diagnosis and therapy of rheumatic diseases). This is where it got stressful. It took almost 2 months for them to approve my referral and then I had to wait another 2 months for an appointment. I didn’t get to see a Rheumatologist until July 2017.
I finally got in to see a Rheumatologist! The initial visit was good, I had to do more urine & blood work samples, and since the Plaquenil did help with a lot of the joint pain and rash, I still was swelling really bad from my neck down. They even forced me to get all of my updated shots and some that you typically wouldn’t get until you’re 65!
Upon further testing, my Rheumatologist then took a hunch that I might have Lupus Nephritis since the swelling wouldn’t go away and it suggests that I might be spilling protein in my urine. This was the clue that helped him figure it out. Apparently, when you spill protein in your Urine you will experience Edema. With that hunch he had me see a Nephrologist (a specialist in medicine that concerns itself with the kidneys). Of course, that meant I had to wait 2 months for an appointment until then they figured out another treatment plan to help until I could see the Nephrologist. I also got to do blood work samples every single week.
(Don’t let my face fool you, getting stabbed in the arms every week got very tiring)
By the end of August 2017, my Nephrologist appointment came up! With the test results from my urine & blood samples I had, they felt strongly that the Lupus was attacking my kidneys. But to completely determine that, I had to undergo a Kidney Biopsy. Yes, this does seem scary and I will admit I was freaking out a bit. Especially since they told me that they just stick I long needle in my back to collect the sample while I’m awake the entire time, it’s not as bad as it seems. If you want to read further into it, click here. I just won’t go into great detail with you. With the kidney biopsy though you are required to stay in the hospital for observation for at least 24 hours. And for the first 4 hours after the procedure, you have to completely lay flat on your back and not move. Good thing there was a tv in the room.
(Here is a photo of me at the hospital, because what else are you going to do while you’re on bed rest?!)
About 2 weeks after the results of my biopsy were in and determined I did have Lupus Nephritis. YES! It only took 9 months to figure out what was wrong with me, but I couldn’t have been happier. My Nephrologist team decided to put me on the most extreme treatment plan they have to really kick my kidneys back into gear.
I’m not going to lie, this whole year has been so insanely crazy to me and I still can’t believe this happened, but there could be worse things. I’m lucky enough to have an AMAZING medical team from the University Of Utah helping me every step of the way and getting me as healthy as I can be. I also could have never done this without the support from my family, friends, and co-workers. They truly are selfless people and I couldn’t have gone through this year alone.
If you are experiencing this or know someone, I really hope I can help you with any support I possibly can. Please don’t hesitate to message me. I can help you through doctors appointments, or just any question you might have. Just know I’m not a doctor, so if it’s a medical question you should seek professional medical help. But just know I am here for you!
If you’ve been recently diagnosed with Lupus, check The Lupus Foundation of America website. They have amazing resources & advice.
