Once again, I have arrived at that deja-vu place I have been many times before. It is that place of eager anticipation for my upcoming doctors’ visits. This time my visit will take place at the (NIH) National Institutes of Health in Bethesda, MD. Tomorrow I will board a MegaBus for the ridiculously low (total) price of $13.50 (I swear).. to make a 10 hour round trip that I hope culminates with some definitive medical answers. Yes, I am a bit apprehensive with a healthy dose of “chicken” when it comes to slicing open my bottom lip to do a salivary gland biopsy (or any invasive procedure for that matter, which requires me to be awake). Yet, I know that it is necessary to get some answers. I am armed with my “Memory Aid“: The Health Book of Me. What is that you ask? It is a 3-ring binder filled with everything a doc might want to know…essentially it is the book of ” Sjodry at a Glance“. It begins with my current meds; symptomology; past surgeries & diagnoses. I then have categories for records/doctor’s notes from PCP; ENT; Labs; Rheumy’s; Eye Docs; XRays; BP’s, Etc. When you are a patient who has spent a large part of your life going to doctors and searching for answers or treating symptoms, the many doctor’s visits, diagnoses & prescriptions begin to blur. Then add in a Sjogren’s severe memory deficit and providing accurate information to any doctor becomes a challenge. Anyway…I am once again hoping that this will be “the” visit that finally puts all of the pieces of my unhealthy life together into one clearly defined diagnosis (even if it ends up being a co-morbid one). At this point in my life, I don’t even care what the diagnosis it is..as long as it is accurate, is inclusive and explanatory of all of the symptoms I live with and I have a recommended treatment plan to go with it. In other words, I do not want to continue to flounder and be treated symptom by symptom, but rather as an individual with a whole diagnosis. I do not fault any of my past physicians for not getting it figured out…particularly the docs who treated me as a po, little sickly child. I mean, I doubt if physicians in 1973 would have made the connection of Sjogren’s to my Bronchiectasis and subsequent Lobectomy (lung removal). Heck, for that matter, I am just starting to see the big picture myself. It has kind of been like a big Ah-Ha series of moments for me these past few weeks. As I research & learn more about Sjogren’s, I am consistently saying OMG…(that’s oh my gosh for you non-texting folks), I get it now..it is all starting to make sense in a big, connect the dots, autoimmune way! :-0
So I am ready for my big, wifi capable bus ride. I haven’t been on a bus since I was a kid. Well..at least I will have plenty of time to write down all of my questions for the doctors on the study team; read for as long as my eyes will allow it and in general, NOT stress about any bad weather that I don’t have to drive in! So until my next post….Mr. MegaBus Driver: Move That Bus!