06/13/2026
UPDAAAATE… and it’s pretty dang awesome!!!
Michael and I headed to Wash U Thursday afternoon to get a lay of the land before appointments on Friday. Found a good hotel near the hospital so we are set for come what may.
Friday started with X-rays at 7AM, followed by about an hour of lung function testing and some bloodwork then in to meet my new pulmonary Dr. Spent about an hour with the Dr going over all the fun stuff I have been up to since August and what landed me in his office. Everyone I worked with has had the same reaction: “This is weird, what is happening?” I just grin, “yeah, trust me it isn’t you or the machines… I know it’s me, well aware!” On the plus side, I was able to get both the respiratory tech and Dr laughing during conversations so I took that as a good sign. While visiting rheumatology last week our appointment started light hearted and got serious by the end so I took that as a good sign my results weren’t a buzz kill this time!
Long story short: I do have an early stage of ILD BUT between being on pred for the previous weeks & new dosages now and rheumatology noticing my breathing and starting on the entry level of the lung meds immediately I have NO NOTICEABLE SCARRING!! So as long as I respond to treatment well things so far should be able to be stopped and good chance reversible🎉🎉. Lungs are inflamed but they are working and “healthy” for being a mess right now. Can I get an AMEN🙌🏻🙌🏻
Tweaked some meds, added some meds and more bloodwork so they can decide which treatments they are going to add as the lung meds increase and prednisone decreases. Immune system is a hot mess at moment so I will not be too social for awhile yet as meds get to levels they are wanting but that is okay. It will be a slow work in progress as they see how I respond to the drugs over the next couple months and if the swelling and joint pain returns as the prednisone tapers, but everyone was smiling as we shook hands with the Dr after the appointment😁. My respiratory assignment now is to work on moving and getting stamina built back up while the drugs do their thing. I am basically in rehab mode now with a goal of being able to walk continuously for 30 minutes by next month. As rheumatology and pulmonary are talking shop it sounds like I should be able to do whatever additional treatments they decide to add locally so that is also a win along with whatever is decided on the rheumatology side of things for the actual Dermatomyositis. Simply could not have asked for a better appointment and I am pretty excited to see how well I am doing when I go back down for a recheck in October!
It has been a heck of year but I am a firm believer God put the perfect people in my path to realize there was something weird happening and figure it out! I couldn’t help but chuckle to myself yesterday as we drove home… “I can’t even believe all this started with what I thought was a bug bite on my toe… this is nuts.” As I told my Drs. “Apparently my immune system is a tad dramatic. A bit too much main character energy for my taste, but she seems to be calming down so that is a win! Girl has got to chill!!”
Life is good.. exhausting, terrifying, confusing, annoying, eye opening… but good 🥰