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Thank you so much! I called and asked the nurse to refer me to a pulmonologist. It is a rheumatologist I have been working with. My blood tests came back showing a low positive for scleroderma. I am not okay with waiting until December. I have read what this disease can do to your lungs heart kidney and digestive system. I have absolutely no skin symptoms. If nobody calls me back by Tuesday I will have to be more aggressive. The nurse acted like I was being over concerned and a nuisance. What I have found is that this is not a common disease and many doctors do not have a lot of knowledge on it. I just needed someone to tell me it's okay to be more aggressive and my own advocate I guess! Thank you!

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Replies to "Thank you so much! I called and asked the nurse to refer me to a pulmonologist...."

@jeng1176 Hello, I'm so glad my words spoke to you. You MUST be very assertive, not aggressive. I believe we can and must require our medical professionals to be open, honest, up-front, and available with answers and knowledge. My body. My tests. My information. Your responsibility, mr. doctor, to share all you know so I can, with your advice and guidance to take whatever steps are next for the best outcome.

When I learned I had that responsibility to myself and my family, I grew…I felt myself become an adult, no matter my numeric age. I grew up and began taking responsibility and not let the medical folks take away my determination. You be strong, develop a steel backbone, Hold yourself straight as possible, breath from the diaphram before walking into a doc office or test or hospital. You own your body. You are in control . Remember that. Always. I have found that to be a struggle well worth fighting and winning. I am in control. This one thought gives me the strength to stand a bit straighter, fight again or harder or still, deal with whatever rolls my way. Important to have that inner strength available so whatever happens, we can handle it with calm and grace and do well.
Blessings again, as you take these steps. Use these groups and these wonderful Connect folks to share and learn and to help you through this journey.

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