Lid surgery on Sept 17... not in time for the reunion, but it was either then or a week before the reunion because I need to wait 6 weeks post-infusion for safety (infection). Also 2 not-so-happy-making things (besides not getting the lids done before I am being photographed with all my drop dead gorgeous classmates) - (a) the cosmetic improvement might not be as much as hoped (or suggested) because I have some complications (mostly, not enough skin - my pre-Graves eyelids were so snug and bag-free theres not much skin to work with) and (b) they have to take tissue from the roof of my mouth in order to create little springs/supports to keep my lower lids up. I had hoped they would take from my ear, but I guess mouth tissue works better. I was told that will be the most painful part - it will feel like the roof of my mouth is burnt for 2-3 weeks, then just feel weird and numb for a few more weeks. Whatever. I will look somewhat better, and most importantly my eyes will be healthier and not full of abrasions and always tearing up and letting light in while I sleep. My eye docs were AMAZED at my improvement and they said that at least as far as UIC goes, Ive changed the way they will treat Graves ophthalmopathy in the future. The Lions Club reporter did an interview, and then we took photos of me with my eye team - so hopefully it will lead to broader rethinking of the treatment of auto-immune disease with rituximab (because this didnt just improve my Graves complications, Im pretty sure it is putting lupus in REMISSION). What a long freaking journey. I went from a doctor telling me it is all in my head, to practically being cured of 2 diseases for which they claim there is no cure. Thank you for sharing my journey. As this part ends, and my healthier life begins, Im gonna make good on all your well wishes and do my best to do good in the world. After being dormant for so long, Im ready to contribute, to participate, to thrive.
Posted on: Tue, 22 Jul 2014 20:00:35 +0000
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