Knowledge is Power

Last week I saw a  rheumatologist  from the U of U. My internal medicine doc referred me to have some additional symptoms checked out to see if the Sarcs were spreading. He told me that the U of U team of specialist would be the best place in Utah. I told him how hard it has been to find docs that really know about how to help Sarcs.  He wrote a referral to the docs and they were able to get me in within 2 weeks rather than having to wait the 6 months if I had made the appointment on my own.

 First the specialist wanted to check to make sure I did not have Lupus. She did this because Lupus symptoms are very similar to Sarcoidosis. Besides my daily lungs and lymph pain, I have been having   additional symptoms the past few months; pain in my hands and fingers, breathing attacks, severe headaches, and swollen glands in my neck.

At the appointments we did many tests and x-rays and she referred me to a neurologist to see if the sarcs have spread to my brain or nervous system. I already have been waiting to see a pulmonologist  at the U of U to have my breathing tests and CT scans done in March to see where my lungs are at.  She wants the lung doc to the handle the main treatment.

She called last night and good news…I do not have Lupus. I was really grateful when I heard this news. Once you have Sarcs you are really prone to having other auto-immune diseases. So happy I am just given one disease to deal with. The only thing that she was concerned slightly about was the fact that the x-ray showed the beginning of skeletal granulomas, which is basically the beginning of bone sarcoidosis.

She was not overly concerned about it so I won't be either. She told me that since the majority of the sarcs are in my lungs and lymph system that the pulmonologist will be the main doc handling treatment and what ever you take for that should help the bone sarcs as well.

The frustrating thing from my previous lung doc experience is that they just want to prescribe steroids, which has proven in the past to make me worse. But I am open to seeing a new pulmonologist in March at the U of U. I have been waiting to get in to her for a couple months. She is supposed to specialize in Sarcs. Hopefully she will have other ideas than steroids and cancer drugs that just suppress my immune system. If not I will just continue on this chiro path which seems to be working now and use the U of U docs for diagnosis and tracking of this disease.

So today I found gratitude in:
1. Not having more than one auto-immune disease
2. Knowing that knowledge is power in regards to knowing where the sarcs are in my body
3. Sunshine that made me just feel excited for spring to come
4. Knowing that baseball and lacrosse are just around the corner for my two teens..can't wait to watch them play what they love to do
5. So excited to take a deep breath of clean air today….Thank goodness for no inversion today!