Well my IBD friends, I did indeed have a Remicade allergy. My poor mouth is chapped and split from the swelling, but it's getting better. I am doing 20mg of prednisone for 3 days to help the allergy reaction. My GI has finally agreed to do a colonoscopy (will be picking a date tomorrow) to see if I do in fact have active disease. I know in my soul that it is my Crohn's; he thinks it's IBS, which is bullshit because with IBS you don't fucking bleed when you use the bathroom unless it's from an external cause.
I asked my PA what she thinks my next course of action is now that I have literally exhausted every option when it comes to Crohn's medications. She said if I do have active disease, the last medication I can try is Tysabri...which is scary and not available locally, so I'd have to drive every 4 weeks to the large hospital over an hour away. It's where my dad had his chemo infusions and where he died :(
Speaking of my dad, tomorrow is his birthday. He would have been 58. I haven't really processed these emotions yet and I am just so sad. After school RJ and I are going to go to the wildlife refuge where my dad used to take Kim and I (my twin) on walks ALL the time. We called it Walking In The Woods. I will be spreading some of his ashes there. It will be very sad but I think he'd be happy with that choice. I will post pics tomorrow and write more later.
Just please, everybody, be sun safe. Wear sunscreen or makeup/moisturizer/lotion with an SPF EVERY SINGLE DAY, EVEN IN WINTER. Melanoma (and skin cancer in general) can strike whether you tan once a year, or you have never a day in your life. Know your risks. Melanoma Research Foundation has amazing information that can literally save your life, as does AIM for a Cure, which is the organization that is hosting the Melanoma 5k in 2013 I will be helping with and participating in! Check them both out, read the stats and facts, learn your risk factor(s), and please-if you are able-donate to both. Any amount helps. Also check out these blogs that will not only give you inspiration, but it may change your life: Adventures With My Enemy Melanoma is written by my friend Chelsea who is a Melanoma survivor and has amazing insight and spirit. Pretty In Pale is a blog written by my friend Katie and she lives in Oregon and is the amazing Melanoma warrior hosting the Melanoma 5k I am participating in in Oregon! Happy reading, and have a wonderful night!
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