Finally.

It's 'OFFICIAL' official.

My Lupus diagnosis is Rheumatologist official now. The following is a testament to why you shouldn't let one jackwad medical "professional" doubt your symptoms or discourage you from finding the help you need. Here's my story.

Back in 2020, at the dawning of the covid-pocolypse, I was having some really weird increasingly worse health symptoms that wasn't covid. (3 years prior I had developed hypothyroid disease) After having an aunt with Lupus and a cousin with other autoimmune issues, tell me that I needed to go in and get checked just to be safe, I went in and had some labs done by an adult medicine doctor- not a Rheumatologist. The doctor told me four out of five times when people come in suspecting lupus it's not. But with the way my results came out and my family medical history, he said there's no way it couldn't be. (This particular doctor had almost gone into rheumatology, but decided otherwise.) We decided from a few rheumatologists the next state over to go see, because the local options for rheumatologists weren't that great at the time (one in particular he outright refused to send me to. He knew them and was not impressed by them overall, rightfully so. I have also heard the stories from patients/family members.)

Unfortunately, the rheumatologist I went to proceeded to talk over the top of me and invalidate every symptom I was trying to tell him about and basically just blew me off. I just wanted to know what was going on even if it wasn't a lupus diagnosis. But even when I tried to explain all the different symptoms in hopes that it could help him piece things together, it was almost like he was infuriated that was even there looking for help. He hyper focused on the lupus diagnosis suggestion from the doctor. I was "too young!" I was 25. He "wasn't sure what it was, but it wasn't lupus!" 'Just because my maternal Aunt has lupus, didn't mean it increased my chances.' Essentially he liked to hear the sound of his own voice and how smart he was. It was like he was getting off on shooting down everything the referring doctor had sent him because he felt Superior in his knowledge. I never went back. I never wanted to do that again. I gave up on rheumatologists. $500 to be bullied and put down by a medical "professional." Luckily my regular doctor continued to treat me for lupus, regardless of what that rheumatologist had said. After being on hydroxychloroquine for a while I did get some relief. The flares weren't nearly as bad. And after a while, I was able to function semi-regularly like a partial human being again.

5 years later, after I'd been having increasingly worse and prevalent migraines, I was was referred to a neurologist. (Good news. I have a brain. It doesn't have a friend. And it's not about to spring a leak. 😁👍) It just so happened that the nurse at that neurologist's office also had autoimmune problems and after giving her the rundown on my health history, she said 'you should go see my rheumatologist! I can have the neurologist give you a referral.' This Rhem had recently set up a practice nearby in the area. They had not been in the area to my knowledge 5 years prior. Something told me to 'risk it.' risk having my hopes for help crushed again. Risk sitting through an expensive doctor's visit just to be bullied, blown off, and gaslit. My referral was accepted, but the doctor told me that they didn't want to see me until after I'd had some blood work done. I'm addition I figured I would have my old doctor's office forward all of my records, including my lab results from the years before. After getting that spendy blood work out of the way, I finally had a date. Despite the fact that there was A LOT to go over, this time around I could tell this was a medical professional that knew what they were doing and actually cared. They talked to me like a fellow human being. They listened to me, AND they explained what and why. I had markers for Lupus(obviously), rheumatoid arthritis(My first doctor wasn't sure if it was RA, or if the lupus was just mimicking it), and sarcoidosis. The sarcoidosis was a new one, but it just so happened that at the same time my younger sister is also being monitored for sarcoidosis by her doctor.

Now I've had an emergency room doctor. Look at me and tell me that I'm weird after going in on nurse's orders to make sure I wasn't having a stroke or aneurysm(I had one super dilated eye and that same side of my face was also numb)... But having a rheumatologist say to my face with visible concern on their face, " your Labs are weird." THAT was unsettling. But they were drafting battle plan and we were going to figure it out.

A couple of days later I went in and had 18 vials of blood drawn for labs (I'm already in denial for what that price tag is going to be). The nurse told me I should probably eat a steak for dinner when she finished drawing the last vial. 🤣 Apparently, the hamburger for dinner wasn't enough because I inhaled an entire 16 oz bag of jerky the next day with breakfast. A trouble spot on my skin was biopsied by a dermatologist. I was sent to an ENT and after looking me over he told me he didn't want to do the biopsy, because he was fairly certain after hearing my symptoms, evaluating my mouth and a feeling the inflammation of my salivary glands he could confidently say I had Sjögrens syndrome. He really didn't want give me an additional puncture wound in my mouth, And that sometimes the results can still come back negative even though it's a positive case because the person is so early and the stages of the disorder. A few weeks ago, I had multiple x-rays done on my hands, feet, SI joint, and chest. Definitely maxing my deductible EARLY this year.

In a couple of days I'll be going in for my first follow-up visit to go over all of the lab results and deciding a treatment plan. It's so weird not to feel dread about an upcoming doctor's visit. I wouldn't exactly call it excitement either as it's not like they're going be able to cure me or anything. There is, however, hope. Something I haven't had in regards towards my health in years. This rheumatologist wants to figure my sh*t out. And lord knows, I'm ready to get some answers, and maybe even some relief.