Miss Vickie
Well-Known Member
As some of you may know, I have pulmonary Sarcoidosis, an autoimmune disease that can attack any area of the body but in my case, attacks my lungs, causing fibrotic lesions as well as fatigue and joint pain. Prior to my WLS and subsequent 140 pound loss in 2005, I had a very hard time getting around, had to use an inhaler, and had lots of joint pain and fatigue; however, the weight loss eased my symptoms and, perhaps coincidentally, I've done fine for years.
So fine, in fact, that I haven't had to see my pulmonologist since 2007.
Last year, since starting school again and lots of life and work stress, my Sarcoidosis has started acting up again, and my breathing is difficult. I'm sleeping 16 hours a day when not in school or work, and my little joints in my fingers and feet hurt. In short, I'm a hot mess.
I tried to get in with my lung doc but he couldn't see me for many weeks. I never really liked him a lot so I had my nurse practitioner, my primary care provider, manage me. However, I continued to get worse and worse, despite short burst doses of Prednisone and two inhalers. Time for a specialist.
She recommended a different lung doc and I thought why not, got scheduled and saw him last week. What I expected -- a prescription for low dose prednisone -- didn't happen. In fact he have me NO treatment at all. Instead, he blamed my fatigue on my (very stable, very minimal anemia), and said I needed to 50 pounds. He said it's great that I lost 140 pounds but I'm still a 200 pound woman and am "far too fat". When I asked how I could exercise when I can't climb stairs, when I wake up coughing (one of the primary symptoms of Sarcoid is dry cough) and when am so fatigued I can barely keep my head up, he had no answer. NONE.
I've only had a couple of fat lectures in my life, because mostly my providers have been super cool and understanding; we've discussed how weight loss might help my hypertension and stave off diabetes, but mostly they've been happy to treat me while encouraging lifestyle changes. This guy, however, gave me an inappropriate lecture (it's like telling a MS patient to climb Mt Everest) and refused to treat me. And I especially wasn't expecting it after losing weight, particularly when my symptoms had been gone for such a long time. However, the one thing I have that is unrelated to my weight -- my autoimmune disease -- is being linked by this so called "specialist". Anti-fat bias, much?
I asked for treatment. He denied me. So I won't be seeing him again. And, back to the drawing board to find a lung doctor to treat me, hopefully one that knows his backside from his elbow.
So fine, in fact, that I haven't had to see my pulmonologist since 2007.
Last year, since starting school again and lots of life and work stress, my Sarcoidosis has started acting up again, and my breathing is difficult. I'm sleeping 16 hours a day when not in school or work, and my little joints in my fingers and feet hurt. In short, I'm a hot mess.
I tried to get in with my lung doc but he couldn't see me for many weeks. I never really liked him a lot so I had my nurse practitioner, my primary care provider, manage me. However, I continued to get worse and worse, despite short burst doses of Prednisone and two inhalers. Time for a specialist.
She recommended a different lung doc and I thought why not, got scheduled and saw him last week. What I expected -- a prescription for low dose prednisone -- didn't happen. In fact he have me NO treatment at all. Instead, he blamed my fatigue on my (very stable, very minimal anemia), and said I needed to 50 pounds. He said it's great that I lost 140 pounds but I'm still a 200 pound woman and am "far too fat". When I asked how I could exercise when I can't climb stairs, when I wake up coughing (one of the primary symptoms of Sarcoid is dry cough) and when am so fatigued I can barely keep my head up, he had no answer. NONE.
I've only had a couple of fat lectures in my life, because mostly my providers have been super cool and understanding; we've discussed how weight loss might help my hypertension and stave off diabetes, but mostly they've been happy to treat me while encouraging lifestyle changes. This guy, however, gave me an inappropriate lecture (it's like telling a MS patient to climb Mt Everest) and refused to treat me. And I especially wasn't expecting it after losing weight, particularly when my symptoms had been gone for such a long time. However, the one thing I have that is unrelated to my weight -- my autoimmune disease -- is being linked by this so called "specialist". Anti-fat bias, much?
I asked for treatment. He denied me. So I won't be seeing him again. And, back to the drawing board to find a lung doctor to treat me, hopefully one that knows his backside from his elbow.
