…because I really feel like that is where I am headed. I realize this isn’t really a “topic”, but I needed a place to vent for a moment. I have had several different symptoms pop up since December, and I have been to 3 specialists and my rheumatologist and really haven’t gotten very much help. My rheumatologist was the worst, she basically told me that I needed to learn to live with it and see you in six months. WOW! I wanted to slap her, but I held my composure.
I have lived with a cough for nine months now. My ENT believes it is laryngeal neuralgia. I’ve been a nurse for 13 years, and I’ve had to give up being a hands on nurse to be a telephonic nurse as a disease manager. And I can’t even seem to manage my own disease. The newest symptoms were as follows: severe pain in my ribs and upper chest (which I assumed was from the constant cough), trouble swallowing, weakness in my lower legs to where I couldn’t get up after squatting down, weakness in my arms, extreme fatigue, ability to do any activity or exercise was almost impossible (I lasted about 15 minutes before feeling pain and/or short of breath), numbness and tingling in my hands and feet, loss of appetite, weight loss, and severe constipation and nausea. Now doesn’t that sound like quality of life??? NO!
I just returned from going to see a Rheumo at Duke University Medical Center, which is four hours from where I live. She was very thorough. What I understood from her is that if your inflammatory markers are normal then you should not be experiencing any symptoms. So, I’m waiting on the lab results from those inflammatory markers along with the other 8 vials of blood they took.
I’ve lost friends and family because I “look fine”, and they don’t believe anything is wrong. I’m tired, and sick of physicians who don’t seem to take the time or concern with patients. As a healthcare professional, I’m disgusted. As a human being with Sjogrens disease, I’m discouraged and depressed. Sorry for it being so long.