I feel the need to shower. It’s time to come clean. Not in a drench me with lukewarm  water in an enclosed box kind of thing. I think this is more a metaphoric shower. In my posts talking about my autoimmune disease Sarcoidosis, I’ve always disguised my doctors’ names. It’s time to come clean.

I realized that those folks who do read my posts about Sarcoidosis may be looking for doctors to be their advocates. I know that the process of diagnosis, and just having this disease is emotionally draining. Not knowing where to start, or what doctors to turn to, or ones that even know what the disease is … that’s the hardest part. Not knowing. Feeling alone. Feeling helpless & hopeless.

I guess if I go back an list the characters in this long running play “Living The Sarcoid Life”  I could clear things up. Maybe a list of the ‘advocates’ and the ‘clueless’ might work. But then I also need to think of the liability of talking about the ‘clueless’ … can they sue me for libel? It is only my opinion. For now … just the advocates. Continue Reading > > >

Ride ‘em broncho-scopy. It seems that’s what Señor Pulmonologist will be doing on Tuesday the 12th @ 7:00 AM. And I guess metaphorically I’ll be the bronco. Okay. A new doctor, for a new day, with a new test. How can you go wrong with that? I guess I could come up with a few answers. So … yes … Dr H is going to knock me out, shove a scope down my throat, have a look see, and mine some samples while he’s in there. I can hardly wait! Then he’ll send them off to be mused at, sliced diced and julienned …. and I’ll have to wait another week to get those results. This all seems to just drag on. To top it all off he also wants to send me for an echocardiogram to be certain granulomas haven’t started forming in my heart. He also suggested I see a ophthalmologist. Now I was going to make that journey on my own … but now with a little prodding … (move along there bronco boy!) I’ll make that appointment sooner than later. Continue Reading > > >

Take a deep breath … and hold. It was all so metaphoric. Also metabolic. And just a little ironic. It was said so lyrically. The words had a cadence, a rhythm, a melody, that were at once comforting, yet humorous. Like Mr Rogers in his little wool sweater conducting a CT scan. “And hold it …” such a silly sing song sound. He had a shtick. He had it honed. Maybe he did standup when he wasn’t doing his lab-technician “thang.” Maybe it was too many years doing the same job … looking inside of people. Take a deep breath ….

And so I did. Many times then, and many times before I even set foot in the “imaging facility.” I hold my breath a little each time I hear, “Hmmm … don’t know what that is.” “Hmm … never seen that before.” “I’m feeling kind of stupid today. Can’t figure out what’s going on.” Those are things I didn’t want to hear. Just holding my breath a little more, a little longer. Maybe everything will disappear. Maybe it will all mystically go away. Say a few chants. Say a few prayers. A Psalm in time saves nine … republicans maybe. Keep still don’t move. Maybe no one will see the dis-ease. With each breath held, a little more life was leaving me. How can that be? A little more will stolen from me. When I did breath, sometimes it was strained. Sometimes I’d cough. But I have no cold. Oh damn .. another upper respiratory infection? It’s all so arbitrary. Maybe Apple nailed it when they shuffled off … “life is random.” Continue Reading > > >