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.

I’m waiting for Godot, or Godar, or maybe François Truffaut, or any of the other directors of “cinéma de la nouvelle vague française”. Actually I’m waiting for Casey, Dr Mike’s assistant to call me back. He’s investigating getting my pulmonologist appointment moved up. It was set for Monday July 11 @ 2:00 PM, but I didn’t want to have to wait through another weekend for him to take a peak at my lungs … as it were.

Miracle of miracles! He did it. Got it moved to today @ 4:00 PM. I have to run to Swedish to pick up my chesty x-rays & other assorted items. Then I’m off to sell CDs for my friend Amy. She’s playing a lunchtime gig at the IDX tower downtown. Anywho … more later. Have to jam …

Thank you Hanz & Franz. Thank you Dr Mike. Steroids is the name. Treating Sarcoidosis is the game. Well as much as one can “treat” this disease. As Dr Mike told me today, “Sarcoidosis is the ‘soft’ diagnosis” for what’s going on with me. In other words … this is what we think it is. Now I will have to follow the yellow brick road from Emerald City Medical Arts to the pulmonologist he will send me to. But right now it’s mega-steroids for the next six day. I just took my first three pills. Five today. Four tomorrow … etc etc etc … for the next six day. So if I talk to you between now & then & I’m a bit “snappish” please forgive me ahead of time … for the drugs know not what they do.

Dr Mike says the roids will help my breathing “issues” … so that’s a good thing. I’m still not sure whether granulomas are forming in my lungs, along with the lymph nodes being enlarged. All I got from our meeting this morning was that the “shadowing” and the lymph node enlargement were probably causing my “breathing issues.” (My words … not Dr M’s.) From all the blood testing I STILL have elevated liver functions. This has been going on for a long time. My liver is also enlarged, according to images from an upper body ultrasound I had a few months ago. His thinking is that, knowing Sarcoidosis can affect any organ, my liver could have been the first casualty.

It’s the weekend. It’s Saturday. No doctors. No tests. No poking. No prodding. No nothin’. I’m just waking up, and I’m not feeling too great. My lungs feel tight this morning. I’m having a bit of trouble breathing. Chris asked me if I wanted to go to the emergency room, but I said “no.” Wouldn’t Nancy Reagan be proud of me! I figured that this is the way my lungs felt yesterday, and this is the way they feel today. I only have to get to Monday & talk to Dr Mike & get his input.

In the meantime I have to deal with the uncertainty & fear that’s going through my head. It’s a hellish place to be. This land of no. No ideas. No clue. No diagnosis. No relief. Where I really want to be is the land of know. That’s the place I’ll be on Monday … with any luck & and an insightful doctor. At least I’ll have answers & I can move forward … where ever that is.

“I just called to tell you …” Well he didn’t say he loved me, but he did say I have some “black shadowing” on my lungs and some enlarged lymph nodes. I have to give him … that’s Dr Mike (for those of you keeping score) … his props. I went for the chest x-ray just yesterday. He called me with the results, just moments ago. He’s already got me set up to do a chest CT scan. Quick. Direct. Efficient. That’s how I like my physicians …. then again that’s how I like most people. But this is Seattle. Passive aggressive is the modus operandi here … but I digress.

As I go through the laundry list of symptoms … swelling ankles, check … sores on legs, check … appearance of non caseating granulomas, check … shadowing on lungs, check … swollen lymph nodes, check. Hell … that’s one big laundry list … and it tells me I’m washed up. Well maybe not so much washed up as hosed. Right now it’s tough to know what I’m feeling. So I’ll wait on the CT scan & see what news that brings.

For those of you who haven’t Googled sarcoidosis yet ….

Never thought I’d see the day I started blogging. Do I have a concept? No. Not yet anyway. But here it is the first entry, ground zero, all busted cherries & the like. What will it be? Don’t know yet … Maybe I’ll document my trials & tribulations with my latest physical malady!

I’m off for a chest x-ray. I’m on the hunt. I’m trying to find out if I have a cute little number called Sarcoidosis. Or not. A couple of wonderful lumps just magically appeared on my forehead. Went to bed one night … no problems. Woke up the next morning … two lumps the size of peas. They were hard … and sometimes they hurt.

After playing stump the doctor with my primary (un)care(ing) physician (PCP) & a dermatologist that just shrugged & said … “no clue” … I had a plastic surgeon remove them. His best line was, (in the middle of surgery) ” Wow … I’ve never seen anything like this before.” That’s always something you want to hear when a 70 year old man is scraping at your head with a sharp scalpel. The other is “oops … that looks like a nerve … maybe I shouldn’t go near that.”