It’s always fascinating how care can come in cycles. I have spent years hitting my head against the wall when it comes to trying to solve the chronic infections I suffer from; none of my doctors knew what to do or how to proceed. However, I finally managed to convince my GP to send me back to the ENT who had been my surgeon to try and stop these infections for a second time in 2020. My first few meetings with him were still the common answer of, ” Well, let’s wait and see; maybe it will get better on its own, etc\u201d. Finally, I did have to push back; it’s been 30 years of waiting to see. The moment of pause was almost funny, as it seemed to dawn on my doctor in real time that I wasn\u2019t 20 anymore; we had been having these discussions for a decade, but now, with me in my 30s and these infections still happening, it couldn\u2019t be blamed on childhood illnesses anymore. This jumpstart was almost funny if I hadn\u2019t had to wait a decade for it, and suddenly, after blood and sputum testing, I am off to see allergists\/immunologists and infectious disease experts.<\/p>\n
Additionally, a new dentist wants additional support and is sending me for facial imaging and jaw expertise. After 3 decades of dentists scrambling, someone finally admitted the asymmetry in my face has impacts and additional images will aid in care. So, it’s funny how one doctor suddenly feeling confident to ask for help has spurred other doctors onto the same idea. It’s important to acknowledge that I am thrilled about this; however, it can be exhausting that I had to push for well over a year to get to this point. This was not an easy journey; even now that I am finally moving in the right direction, it can be frustrating to think about how tough it was to get here. It definitely means more doctors and more appointments to juggle, but the hope of having answers soon is definitely worth it all.<\/p>\n
Overall, I am thrilled to have the potential for answers coming soon. I did want to share this experience, as I feel it is very common in the rare disease space: waiting years for anything to happen, then, in the span of a month, having a bunch of doctors desperate to see you and to have you travel for labs, tests, and appointments.<\/p>\n","protected":false},"excerpt":{"rendered":"
It’s always fascinating how care can come in cycles. I have spent years hitting my head against the wall when it comes to trying to solve the chronic infections I suffer from; none of my doctors knew what to do or how to proceed. However, I finally managed to convince my GP to send me […]<\/p>\n","protected":false},"author":2,"featured_media":77446,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[486],"tags":[],"class_list":["post-77448","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog-katie-allen-en"],"acf":[],"yoast_head":"\n