Another Appointment

It's been another week of going in and out of the city to doctor's appointments. Thursday I had an appointment with a rheumatologist. I had never seen a rheumatologist before and was curious to see how it was going to go, not quite sure why I was seeing him either if truth be told. Rheumatologists typically see patients with inflammatory conditions such as lupus, rheumatoid arthritis, crohn's and chronic fatigue syndrome...and they prescribe lots and lots of remicade, so inflammatory condition, remicade, I suppose I fit the bill! I also get a sense from Pulmo Doc that he does not feel experienced enough with remicade to oversee its administration.

I did not expect though to have to tell my history all over again in such detail. I had presumed that Pulmo Doc would have laid the groundwork for me. Pulmo Doc had sent Rheumy a note about my visit with him, but copies of previous imaging, CTs, MRIs, previous bloodwork were not to be found. Too bad because Rheumy was very particular about details that I didn't quite have in my hand or head. "What did the report say for your very first CT scan, did you have parenchymal lung involvement or lymph node involvement?" I believed the answer to be "yes" to both but couldn't definitively say so and as someone who really values precision and details I was driving myself (and Rheumy) crazy. Oh well. Somehow, we got through it, all 50 minutes of it. Rheumy's bedside manner wasn't the best and it didn't help that he had an accent that I had to concentrate hard on to decipher, but that's okay I can cope with that and doctors don't intimidate me. As the appointment was winding down I asked Rheumy if he saw a lot of sarcoidosis patients like me and I got a vague answer. "We see sarcoidosis patients here". I asked again, "But have you specifically seen and followed a lot of sarcoidosis patients?" I wasn't trying to challenge him, honest, I just needed to get a sense of how well he understands the disease and appreciates its complexities. I wanted him to talk to me instead of firing questions at me. I wanted to get a sense of his personal views on sarcoidosis as a disease. The answer I got was the same. "We see sarcoidosis patients here". Okay, it was time to pull back. Then he said something that really got me. "We just need to see more" "More sarcoid patients?" I asked. "No. More of you. We need to see how you are going to respond to treatment, see how your disease will manifest itself, before we can make any judgements because, you know, these pains you have in your legs, they could be caused by depression." I looked at him with shock. "Are you questioning that with me?" "Well, yes, I am, sometimes...." His voice trailed away, his eyes got shifty.

The sarcoidosis patient's (chronic disease patient's) nightmare! The doctor who questions your symptoms....

I hardly know what to say to this. You see, I know what depression looks like. I have looked it straight in the eye. I also know what this disease looks like. I've lived with it for at least nine years.

So to bring myself back to my center and to a more rational and productive state of mind this is what I need to do:

1. Respect Rheumy's desire to see more of me so he can figure this out
2. Remind myself that he hasn't lived this with me as my physician for nine or more years so he has a lot of catching up to do
3. Strive to be an even better communicator with my physicians
4. Remember that this is a complex, evasive, disease that is a mastery of mimicry
5. Renew my commitment to raise awareness for this disease and advocate for more funding for research

I also need to take heart that I have heard through the grapevine that the Pulmonary Division of the particular major medical center/hospital that I go to for my care is very interested in creating a Sarcoidosis Center/Clinic such as I experienced at National Jewish Hospital in Denver. To do that they need to develop a core set of physicians across various specialties that have developed a sensitivity and appreciation for and experience in the complexities and nuances of sarcoidosis. I believe from my conversations with Pulmo Doc that he is very aware of and sensitive to this. Afterall, he was very particular about making sure I saw one particular cardiologist, whom I will see in a few weeks and he wanted to take some time to think carefully about which opthalmologist he would recommend. So maybe, just maybe, in some small way I can make a difference...