Let me start by saying I had a career in the medical field for 15 years in the clinical aspect and I knew of Lupus but not the exact causes or symptoms only briefly in school knowing that it was a chronic illness. Let’s start with the definition of Lupus -Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead.
Here are the types of lupus:
What are the types of lupus?
- Systemic lupus erythematosus (SLE), the most common form of lupus
- Cutaneous lupus, a form of lupus that is limited to the skin
- Drug-induced lupus, a lupus-like disease caused by certain prescription drugs
- Neonatal lupus, a rare condition that affects infants of women who have lupus
Today let’s talk all things systemic lupus (SLE)and I will cover the other types and a future blog post. This is the type of lupus that I have which is one of the most common types of lupus to have for those of you that don’t know lupus diagnosis is higher in People of Color. Please know there is a lot of steps and testing that go into getting an autoimmune diagnosis that will also be covered in a later blog. So let me give you my backstory to my lupus diagnosis:
💜As a child, I had a lot of urinary tract infections that were unexplained getting 3 to 4 of them every month and it persisted into adulthood
💜When I had was 17 they thought I had multiple sclerosis due to extreme right-sided weakness and being unable to walk which I still have the same weakness as of today.
💜Being diagnosed with endometriosis in my 20s, having miscarriages, and tons of female surgeries with the worst recovery hysterectomy by 25 but I still just thought that was a normal thing related to my endometriosis.
💜I have never been an outdoor girl but when I would go outside I would get flu-like symptoms and just be extremely fatigued but I would just chalk it up to the southern heat of living in Alabama and Florida.
💜In 2011 I herniated a disc in my back somehow I was on the toilet and could barely get up I thought the pain would go away but it only got worse so I then got an MRI which said I have a herniated disc I tried everything not to have surgery physical therapy, exercise, & pain management with no success.
💜January 2012 I became extremely sick for two days not being able to eat everything made me sick to my stomach and then I thought I just had a random UTI my doctor called me in anabiotic‘s which I always have to take I am mediately started vomiting it just nothing was staying down I went to the emergency room and they informed me I was in kidney failure we’re not talking just so you have a little vomiting that you’re dehydrated kidney failure were talking creatinine over 4.7 Which is common for someone that is currently doing dialysis That was the scariest news of my life at that time I was a single mom and could not imagine being hooked up to a dialysis machine not being able to work or let alone die, I spent a week in the hospital after a battery of test they couldn’t figure it out they wanted to do a kidney biopsy but they decided to discharge me instead.
💜July 2012 I underwent a Microdiscectomy at Right L5-S1 and herniated after three days.
💜November 2012 had to undergo a Posterior Lumbar Interbody Fusion (PLIF) for re-herniation this is where they put a cage and screws in my spine.
💜 Immediately after surgery, I went into adrenal insufficiency
and the doctors came in trying to figure out why my quarters all levels were nothing but yet no one connected the dots.
💜After going through weeks of physical therapy back-and-forth to pain management after the fusion on my back my pain was not being controlled my muscle tones started to decrease and I was extremely weak in my lower extremities so at that point my pain management said we need to check you for autoimmune-related disease because you should be better by now.
So that’s my journey of everything that I had to go through just to get to the systemic lupus diagnosis. I know I’m not alone because so many of you have gone down the same road of knowing something wasn’t right but thinking that it was contributed to a different element and not looking at all your symptoms as a whole. So in another blog post, I will go more in-depth about lupus symptoms, diagnostic testing, and how you can better get your doctors to not blow you off.
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