I open my eyes and see only pitch black. I know I’m in my the safety of my bedroom but I can feel a dull pain in my chest; yet it’s enough pain to wake me up in the middle of the night. After my eyes adjust and I can make out the slightest silhouette of the window in my room I get out of bed to take some ibuprofen. I know it will be pointless to try to go back to sleep without it.
I wondered if I was going to die.
For the first couple of months of 2019 I knew something was wrong with me. I thought I’d probably be diagnosed with breast cancer (and so did my Dr.’s). I didn’t tell anyone, desperately praying and hoping that the pain and lumps would just go away; finally after a few weeks I told my husband Camron but I didn’t want anyone else to needlessly worry about it. I didn’t have any answers… and I thought it pointless to talk about it until I did have some answers. I could very vividly imagine the pain and suffering that a diagnosis like that would bring; after all, we watched my mother suffer and fade away from breast cancer just four years ago. Tears would come to my eyes just thinking about telling my three little kiddos that I could suffer a similar fate.
But I wasn’t going to suffer a similar fate, dang it! At least not yet :0)
Pathology results finally came back in March as negative for cancer. Hooray!!! My husband and I rejoiced in the exam room for a few seconds before my true diagnosis was given- Cystic Neutrophilic Granulomatous Mastitis. A very rare and painful disease that has an unknown cause and no proven cure. Doctors are divided as to whether it’s an autoimmune disease or some sort of pathogen. What’s even worse is it’s recurrent, meaning when it does eventually go away (after many, many months), it can come back.
Uuuggghhh. (Insert mad face emoji here.)
Doctors have seen an alarming increase of this disease within the last 5 or so years, and many a researcher is working to crack the mystery so it can be treated accurately. Don’t get me wrong… I am so grateful that I don’t have cancer. It just sucks talking about CNGM; I wonder if people will think I’m gross because I have a ‘disease‘. And you know, it involves lady parts…
I’m an introvert at heart and I don’t normally talk about super personal stuff, especially online. (Funny I’m now a food blogger; I love talking about food, just not myself so much hahaha.) However I am talking about this now for two reasons. Number one, it’s important. You (heaven forbid) or someone you know (also heaven forbid) may get this someday so it’s good to be familiar with it. Maybe by then scientists will have got this thing figured out. Until then, I have to figure out how to do LIFE with an autoimmune disease.
Doctors just throw whatever treatments they can at CNGM like some dart game; shrugging their shoulders when the ‘dart’ doesn’t hit the bullseye and trying something else. Everything from antibiotics, to steroids to chemotherapy, to surgery has been tried with mixed results. I am likely heading towards serious steroid treatments and/or chemotherapy drugs like Methotrexate. I’m meeting with another specialist on May 1st to discuss treatment further. Yay.
My second reason for being so open about this with you- I don’t know how going through these treatments will affect The Goldilocks Kitchen. I’m going to try my best to keep blogging and creating great recipes to share, but if I need to step back for a little while (which I hate the thought of) to get healthy again then I will. I do take a break during summer months from posting regularly anyway so I can have more time with my family. I’m also working on getting a second edition of New Mexican Food Made Easy published with a second publisher to get an expanded distribution, so I may focus my efforts on that if I don’t feel like cooking much :0)
Focus on what truly matters.
I know now I better live life to the fullest, since I just had a crazy reminder how precious life is; to do everything I can to make each day special for myself and my family. I celebrated my 40th birthday this weekend with an ah-maz-ing balloon flight right into the Rio Grande River! Plus I got to eat chocolate ice cream cake (Ohhh yeah) with all my family. I do plan to blog about my progress back to a ‘healthy state’ and keep you informed if you’re interested in following along. So subscribe to my newsletter for updates and take care for now. -Emily