Today was Rare Disease Day (a day in which the world wide community recognizes all those living with rare diseases). I have been living with Erdheim Chester Disease for 8 months now and honestly I wish I could just forget it all and be "normal". No shots, No Pills, No dietary issues, Just normal.
I feel like ECD has infiltrated every moment of my life. Tonight we went out to eat and I ordered a sandwich, dry (just chicken breast and bread). The guy got all confused, so DawnMarie said, "he can't eat pesto or dairy, Allergies". This led to the waiter warning me about cross contamination! Honestly...I don't even want to eat a lame dry chicken sandwich let alone have drama while ordering it.
I think the reason I am feeling so aggravated is because I know there are a lot of doctors visits and tests ahead (to nail down the fat wasting issues) and I just don't feel like doing any of it. I need a break!
Don't worry about me. I am sure this funk will pass.
If you want to help just pray for sunshine, we could all use a little more light in out lives right about now.
Don't worry about me. I am sure this funk will pass.
If you want to help just pray for sunshine, we could all use a little more light in out lives right about now.
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