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Showing posts from July, 2010

Doctors, new meds, liver failure..oh yea! I have AS!

Monthly rhuemy visit was good. Didn't have to wait to long..let me say that I CAN'T STAND WAITING FOR HOURS...I do want good care and for her to take her time with me, but if you're that type doctor (which all should be) then plain ahead! She informs me that I'm the harder to treat AS patient. I'm not the mild case and I'm not the advanced case..the middle road case. The one that shows some things in the blood work, but not all..that shows little signs of inflamation but everything is HUGE/SWOLLEN... Been on humira for almost a year why is it not working better. Is it the best drug for me? Do I need it? On methotrexate as well. Same questions... Let's figure out how to get your swelling down and the pain better. Sounds GREAT to me!!!!!!!!!!!! We're going to stop humira for a month--see if it's really doing anything. Ok, so let's see either I'll have no change or I'll get worse. Um excuse me..worse? Really? Why wouldn't I want to be in

You are your only advocate

I'm trying to stay good about keeping updates on the good ole blog, but at times you just forget...or just don't really feel like much of anything. Vacation was wonderful! We had an amazing time at our friends beach house with basically no connections to the "outside" world as our phones pretty much had no service. It was actually AWESOME! I actually read on someone else's blog that you should always have pictures..but I haven't even loaded them to the computer yet...sad I know! I will load and post soon. One week ago today we were riding home from a wonderful family time. However this particular week has been horrible for me! The first few days home were spent waking in the middle of the night with the most horrible middle back pain. The past 5 mornings have been spent waking with the worst headache. No, it's not gone.....still a small reminder that it's there. I'm wondering why? Why am I waking with a headache everyday. Is it that my neck is fusi

beach doesn't make the pain go away but it sure looks better here

So, spending time at the beach with the family this week. I was really hoping that the beautiful beach would help with this awful pain but being hit in the back with a full beach bag and the man not even realizing he did it, has NOT helped! I love being able to see the ocean/beach while I type this, but really hate the fact that I can't just ride the banana boat with my girls! I'd love to be able to do this just one more time. Maybe had I realized that I was going to have this dreadful disease I would have done a LOT of things like that! I'm thinking that you should never say NEXT TIME!! Will there be a next time? Reminds me of the movie "Remember Me"...she orders dessert first. Why? he says..she says, well, that's my favorite part and can you 100% guarentee that nothing will happen and I'll still be here for dessert? Can any of us..guarentee that we'll be here tomorrow? NO...I can guarentee that I'll be in heaven and I'm thankful that I