06/09/2026
* Long post, but an update!*
Hello all! I have had lots of folks checking in and asking how things are going, so figured it was time for an update now that I actually have some new info to share! Last we left I was gearing up for a 20 day prednisone taper as we were waiting to see if all these crazy issues I had been dealing with for the past few months were related to a shot I had been taking for eczema. Well, during that 20 day taper things actually started to take a turn for the better and I was pretty pleased that I was handling the meds okay and by the end of this round my swelling was finally going down and I was able to move easier than I ever had after a round of prednisone. A few of the rashes had subsided and I had noticed previous blisters returning in spots so in my mind I was thinking, "Hey the shot must be wearing off... this is great!!!" Biggest issue then was I still had zero stamina and my breathing was still giving me grief.. annoying but somewhat managable. The day after my last dose of prednisone was my rheumatolgy appointment. I had been getting various results back from the biopsies and lab work run but most things were coming back negative with a few things elevated or out of range. Sounded like Lupus was out but there were other tests being run so I just put it out of my head. Well, got to rheumatology and found out that they actually had got results back and I have been diagnosed with Dermatomyocitis. Yeah, I can't pronounce it either so don't feel bad and the "Huh?" look on your face, yeah, had the same one. I had heard of this off and on when talking with dermatology and done a little research and symptoms did align, but they also aligned with other things so didn't think too much of it and I had actually started feeling better so was still thinking everything was shot related... nope!
So, the "D" as I call it since I vary rarely actually pronounce it correctly has a couple varieties and are tested using a variety of blood makers during lab work. Some attack skin, some attack muscles, some attach lungs and some do a combo. Based on my initial tests it was clear mine was obviously attacking my skin however now that I was off the prednisone and rheumatology saw me in person and could see how little stamina I had and how my breathing really was in real life the appointment got a bit more serious the longer I was there. In the end more bloodwork and high res CT scan were ordered. The next day I went in for the CT scan and based on the labwork done the day before and the CT scan it turns out I apparently have the lung attacking version of the "D" and found early stages of Interstitial Lung Disease which is what rheumatology was wanting to avoid. This was not exactly the news I was expecting, but it sure does explain why I have been feeling so crappy for months! Anyway, rheumatology got on the war path in my honor and I am now headed to Washington University/Barnes this coming Friday for more tests and to meet with a pulmonary specialist to get a treatment plan in place for the ILD as that can get pretty nasty pretty quickly. I have already started back on prednisone and the entry level treatment for ILD and am feeling alot better, just can't do much as I still have zero stamina.
So, while this was not on my bingo card for this year I can't help but be thankful for the Drs I have been working with that trusted their gut and ran tests just in case because stuff just wasn't really adding up. The fact that dermatology didn't wait to run tests and do the biopsies of the weird rashes before they disappeared got me into rheumatology. Rheumatology was not pleased with my breathing when I was off of prednisone and pushed for a high res CT that caught the ILD early is a prayer answered. I had been talking to Michael and my biggest fear was what if this wasn't the shot (while fully expecting it to be the shot) and if by waiting around I am messing something up. Never in a million years did I think that was actually the case and for dermatology to jump into action when they did is God's divine intervention. He has put some brilliant Drs in my path and they are working their magic getting me in with specialists in the field to get this beast back in her cage and for that I am forever grateful. I have no clue what the coming weeks, months will hold but the fact that this thing has a name, I have Drs that are in my corner and there is a treatment game plan being made I am beyond thankful! Bring on Friday!
