On the Road

Six years ago, during that same crazy year when my professional world fell apart, my asthma took a strange turn. I became so sick, I couldn't get out of bed for a month. I had a sharp, shooting pain in my right lung that felt like a rusty saw going in and out with each breath. The initial diagnosis was flu. I didn't respond to the antibiotics. The next diagnosis was allergic asthma on overdrive, so I was prescribed prednisone. Prednisone is a corticosteroid. Not the kind of steroid that body builders take to gain muscles, this is another form of steroid that is an extremely strong anti-inflammatory drug. Lots of folks take it for allergies, asthma, lupus, chronic infections, extreme cases of poison ivy or other rampant and unresponsive rashes, it's an immunosupressant, so folks who have immune systems on overdrive are often prednisone patients. Some people use it regularly, you will recognize them by their full moon shaped facial features. It makes you puffy, angry, agitated. Some folks feel a sense of euphoria and extraordinary energy. I had never taken it before. Within a few days, I began a descent into what can only be described as rubber room variety crazy. It was not, for me, a euphoric feeling. I was terrified. My brain already moves very fast, suddenly it was moving at a speed that resulted in my having to work very hard to get the words in my brain to slow down enough for me to speak. I wasn't getting better and after a trip to the ER and an accidental overdose of more predisone by the pharmacist, I was unable to sleep for five days.

Since I was up all night, I got on the computer and began diagnosing myself. Why the hell not, someone else had to have been where I was, right? My prednisone reaction was rare, for some people it is possible to enter what is called a steroid psychosis. It can even trigger latent bipolar disorder. Holy crapamole! The pain in my side was pleurisy. Pleurisy is an extremely painful blister-like occurence on your external lung wall. It was a common condition in the Victorian Era, because so many people suffered from consumption. Why I was so tired and having so much trouble breathing, I can't say. I didn't solve that part of the equation. I did manage to communicate to my husband that the drugs were making me crazy and I thought I had pleurisy. He's a good man, he listened and he advocated for me. He called the answering service and demanded the doctor contact me immediately.

The doctor dosed me off of the steroids and concurred with my self diagnosis of pleurisy and recommended aspirin and a heating pad. Really?! Good grief.

Had anyone listened to me from the first office visit...I'd not have been down that scary path. Not one person addressed the pain in my lung. Amazing, huh? I think there's a general feeling among many doctors that patients, particularly female patients, exaggerate their pain. I had natural childbirth, I know what pain is, people. After this episode, my breathing did not fully improve and I have lived with chronic unresponsive severe asthma since. I was first diagnosed with asthma when I was pregnant, but I didn't take it seriously until this event. It was one of those 'long time coming' scenarios, but this forced me to push for better answers from my doctors. Since then we've been working to figure out what's wrong with me and how to get me back to some semblance of quasi-normal.

So here I am, in Denver as an outpatient at National Jewish Hospital. The doctors, nurses, staff...everyone at this hospital has been amazing. I mean like 'what the hell is in the water here?' amazing! They've listened. They've taken copious notes. They've dialogued. They're treating me like a medical mystery and they're actually excited to solve it. They're looking at every possible condition and they're explaining everything to me in detail. I feel like I'm in some wonderful alternate medical reality. Except for the medical tests, which have not exactly been a fiesta, but I'm willing to do what it takes to get answers.

My patient and loving mother has been at my side. She left her little dog Thelma with a good friend and she's been with me every step of the journey. It's not easy for two strong, smart, snarky, fiercely independent women to spend 7 days of uninterrupted time together, especially when one of them is stressed out and extra snarky...one of them being me. She deserves a medal for her service on my behalf. I hope my love and gratitude will suffice. Thank you, Mom. I love you.

It is that strong, smart, snarky, fierce independence she instilled in me that gave me the tenacity to demand answers and get to National Jewish which is another reason I owe my mother my gratitude. It's so easy, because the deck is stacked that way due to insurance companies and legal factors, to give up. Doctors simply don't have time to deal with medical mysteries. They're not making enough money for it to be worthwhile. They can't afford to risk a misdiagnosis. It's easier to hand you the meds, pat you on your head and send you on your way.

I am so grateful for the staff at National Jewish. What a revelation! I'm so excited to get my diagnosis on Monday! I have so many tragi-comical stories to share with you about my journey here. They'll come when I get home. I have to rest now. Yesterday's bronchoscopy with biopsy and lavage has me very tired indeed.

The good news, the very good news, is that if there is any place on earth where I can finally get real answers, this is it.

Love
Madge