When I was 15, I became very exhausted. It was horrible. I couldn't do anything. Sleeping didn't come easy which was crazy considering how tired I felt and getting up and doing something was just far too much for me.
I went to doctor after doctor for about a year before they finally told my mom I was a hypochondriac. Mind you, I was eating fine, but I had lost a ton of weight. I didn't weigh that much to begin with and was less than 100 lbs at this point. My mom took me to another doctor who drew a few labs on a couple of different occasions. They really felt like it was my thyroid, but nothing was showing up in the labs. He told us that he was going to run a thyroid panel one more time and then he was going to start looking for cancers.
Terrified was an understatement. My mom got a phone call and sure enough, my thyroid was finally showing up as out of range. Unfortunately, I didn't respond to the medication very well. So, I ended up seeing an endocrinologist who found out that I didn't just have hypothyroidism, I had autoimmune thyroiditis - Hashimoto's - and it was a little more difficult to get under control. It took years, but it finally happened.
Then when I had my son in 2018, I just couldn't bounce back from birthing him. I treated my postpartum depression and anxiety. I healed well from the c-section. I tried vitamins and had my thyroid check and nothing was coming back. I cried to my OBGYN at my year follow up and routine visit. She started asking me all of these weird questions:
- What are your symptoms?
- Do you have joint pain?
- Your face is red and you look like you have a "butterfly rash", do you get that often?
- Has anyone ran "list of test names" on you?
I had never had a doctor asking me these questions before. It scared me so I asked her what she was thinking I had. She told me she was concerned that I may have lupus. She ran an ANA and a lupus antibody panel. They were both positive, so she referred me to a local rheumatologist.
My first visit with that rheumatologist was anything but ok. She insisted that even though my labs were positive I didn't have lupus because it was predominant in African American women. I told her that was gaslighting if I had ever hear it because while it is predominant in African American women, white women also get lupus and labs don't show up positive for nothing. She refused to diagnose me. She sent me back to my primary care physician with a diagnosis of fibromyalgia.
After a few weeks of treatment for fibromyalgia and not feeling any better; I went back to my family doctor and told him about my experience. He was up front and honest with me, and I am so glad. He told me that he didn't really know enough about lupus to tell me anything, but he looked at my labs and saw they were positive and agreed that I needed to get a second opinion. So, he sent me to Dr. Kim who has been a life saver!
Dr. Kim ran labs on me again because it had been a few months since my last set had been drawn by the time they got me in. They also came back positive, and he wanted me to immediately start treatment. So, I started an at home remedy that he prescribed. When I still wasn't feeling better, he wanted to add an infusion, so I have done infusions for the last two years at his office. (I'm currently in the process of switching to at home injections and hoping it goes well.)
About a year into my treatments, I still just wasn't feeling better. The nurse noticed my heart rate had been high the last few visits and they decided I needed to see cardiology. So, Dr. Kim made the referral. While I was waiting on the phone call, I ran across a Tik Tok about a girl who had POTS. In the video, she was listing all of her symptoms and I realized those were the very symptoms I had been experiencing since I was about 8 years old!!! I just always thought they were normal, and I was standing up too fast.
So, when my appointment with cardiology finally came, I mentioned this to the doctor and he agreed my issue could be POTS and ordered what they call, a tilt table test. Y'all that was the hardest test I have ever had to do in my life. I passed slap out AND they had to administer nitroglycerin during the exam because my heart rate got so high and the symptoms I was experiencing during the test.
Needless to say, I got diagnosed with POTS. Postural Orthostatic Tachycardia Syndrome is what POTS stands for. Nothing too major, but it will definitely make you feel like absolute crap. Once I started my treatment for POTS, I FINALLY started feeling better. After being out of work for two years and waiting to get approved for disability, I decided to go back to work. So, here I am waiting to start my new job in just over a week. I am so excited.
Now, this is the short version of this story. You have no idea how hard I had to really press some of these doctors to make them understand that I was truly sick and wasn't just seeking attention. You see, since I was so young at the time most of this stuff started, they all thought it was in my head. I'm here to tell you first hand, DISEASE DOESN'T DISCRIMINATE! I don't care if you are young, old, black, blue, white or pink with purple polka dots - DISEASE will find you if it wants too. Now, I hope it doesn't for your sake, but it absolutely can! DO NOT be afraid to stand up for yourself. Don't be afraid to find a different doctor. Oh, and don't be afraid to mention your joint pain because while it seems minor, it was the one symptom I never mentioned because I thought I had joint pain from being a rough, sports playing teenager. I was totally wrong. I have lupus arthritis.
Always advocate for yourself! You're worth it! Your family deserves for you to be the best you that you can be and you cannot do that if you are sick!
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