Having seen my expert pulmonary team recently up in Seattle, my doctor and I do not see eye to eye.
I'm so fortunate, as a person with such a rare disease to have such a competent doctor, who is well-suited to treat me.
With this recent visit it was made plain to me that my most life-threatening disease will always be prioritized. This was a new perspective for me.
I take Rituxan (a chemotherapy agent) to suppress my immune system and keep my autoimmune diseases in check. However, it suppresses me so thoroughly that I get sick from being around others who aren't even sick.
Therefore, I've been reducing the frequency of my Rituxan treatments to try and balance the effects.
My dose is based on research done on RA patients more than 25 years ago.
My tests in Seattle showed that there was a slight change in my lungs - a bit more scarring. My doctor's response was to insist that I return to my original dose of Rituxan.
It seems plain to me that the new scars in my lungs are due to my recent bout of pneumonia. I don't have the sense that my lung disease is reignited.
Here's a time when I really disagree. It's my body, not his, and I must weigh the cost benefit analysis. Is it worth it to increase my dose again? What if my lung disease IS starting to kick up again?
I am not giving YOU medical advice -- I'm not qualified to do so.
However, for me, I'm not sure I'll follow doctor's orders.
We have these opportunities as patients to consider whether our quality of life is worth the extra quantity a treatment may give us.
What if going against doctor's orders costs us dearly?
Have you ever disobeyed doctor's orders?
I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.
Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.
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