Journey to a diagnosis...

For my first blog post, I want to share something pretty personal, with the hopes that it may help you in some way. Since January 2019, I have not been myself. The changes started off sort of gradually...extreme fatigue, panic attacks, anxiety, dizziness, terrible chronic headaches, and just an overall sense of not feeling right. Just to shed a little bit of light on what "feeling like myself" felt like, I was always someone who kept extremely busy...always trying to make time for everyone and everything important in my life. I enjoyed exercising, hiking, traveling, spending time with friends and family, and working hard both personally and professionally. For a while I was a full-time student with two jobs and internships....like I said, always busy.

In January 2019, a pipe burst in our apartment building. It was a brand new complex, and we had only been living there for about 8 months. Our unit was the least damaged, however, our living room was still pretty saturated with water. Fast forward one month, and the same thing happened again, leaving the main hallways and some apartment units completely destroyed.

My symptoms started getting worse. I was suffering from debilitating headaches, and was constantly trying to fight off upper respiratory infections. Some days, I had a hard time getting to work, seeing friends and family, and just keeping up with everyday life. We finally decided to have a mold test done in the apartment, to see if that was the culprit. The results came back showing fairly high levels of mold spores in the air, and so, by the end of May, we moved out and bought our house in Baltimore county.

Fast forward to January 2020. It felt like something was taking over my body. I thought that removing myself from the apartment would just make me feel better, but, that wasn't the case. My fatigue was almost unbearable. I had a hard time staying awake at work, and always had to fight off the urge to shut my eyes when I was sitting at a red light. My feet and ankles were swollen, and almost every part of my body was in pain. My face started to swell, and I developed a red, almost butterfly shaped rash across my face and nose. I was gaining weight at what felt like a rapid pace, with no real indication as to why.

I went to see my Primary Care doctor multiple times, who just seemed to think I was "stressed" and needed to "calm down". So, that was a strike out. I went to see my ENT to see if he would be able to find anything wrong with my sinuses, and, of course, that was all clear too. He did however, find a large nodule on my thyroid, which was later found to be benign. So, I went to three (yes, three) endocrinologists before I was FINALLY able to find one to run the right tests...all of which came back normal. Okay, so, it wasn't my thyroid...so, then what was going on? I started to feel a little crazy and honestly just obsessed with figuring this out. I began researching my symptoms (like all of us do) and I kept landing on Lupus. I thought that must be it! I literally had every symptom! So, I went to see a Rheumatologist, who pretty much shut me down immediately...so, I went to see another Rheumatologist who ran some more complex tests. My ANA blood test for Lupus was negative, so, the doctor said "sorry, I don't think I can help you". Why wouldn't anyone think outside of the box? I knew that something was wrong, and I was trying so hard not to give up.

The only thing that seemed consistent in my mind was the I started to feel this way after the first flood in our old apartment. So, I researched mold illnesses and tried to find SOMEONE who could test for it. In April, I finally landed on an integrative health practice in Washington, D.C. Long story short...after multiple tests and an insane amount of blood work, I was diagnosed with a mycotoxin illness due to prolonged mold exposure. I am in the process of beginning a somewhat intense detox, which I will be sharing with you in a later post.

So, what's the point of sharing all of this with you? My point is that you have to be your own advocate, regardless of the circumstances, and regardless of how long it takes to get an answer. If something doesn't feel right in your body, then it's probably because it isn't! No one knows what your "normal" feels like except for you. I went to multiple doctors, specialists, ANYONE who I thought might be able to help. If I had listened to the first few doctors I went to who said I was "fine", then I would have just continued to spiral deeper and deeper into a black hole of uncertainty and feeling like this was all in my head. And honestly, there were times where I had to pull myself out of that black hole. Keep fighting for answers, and please, if you have had a similar experience, then I want to hear about it. Or, if you need support or help getting out of your own black hole, send me a message or write a comment!

Hang in there, take care of yourself, and keep going!

Sincerely,

Samantha Nicole