I have a fever(!), I did not allow my body the rest it needed because I was too manic to sit still, It’s Sunday-not so fun-day, and I discovered a rash on my arms and feet.

I should have gone to bed after finding the rash but I diagnosed myself with lupus instead! I’ll just go to bed next time.



The MRI and Australian

I have developed this coping mechanism over the last 3 years–I glaze over and pretend the things that are happening are not actually bad. I think it is good to have a happy outlook but it is hard to keep it up when you find the holes in your wall and you do not remember how to fall apart so you get jumpy instead. Then you have all this pent up emotion and you want comfort but you end up deflecting others affection because “everything is great! I’m great!”.

I had an MRI and a follow-up appointment yesterday.

My veins can be difficult–I am always prepared for a couple pokes when a nurse starts an IV. Yesterday I got more than an extra poke. The nurse put heat on my arm then made her attempt. She penetrated the skin with the needle, fished around (so painful), wasn’t sure what she got, then, instead of pulling out and making a second attempt, she injected it with saline. That did not work. Blood ran down my arm and dripped onto the floor. She got another nurse to make the second, successful, attempt. I have this strange, square, lumpy, bruise now. That was my worst IV experience. Do not inject saline under my skin, please!

IV in place, I was ready for the MRI. After an hour of “take a deep breath, let it out, don’t breathe” in a tiny tube, the tech pulled me out of the machine and injected contrast dye into my IV. Dye flowing through me, I then got to “take a deep breath, let it out, don’t breathe” while feeling like I am peeing myself in a tiny tube for 30 more minutes. Cardiac MRI’s are not fun.

I then met with my cardiologist. “We are in check, aren’t we!” he stated in his Australian accent. He wants to get me off the prednisone because I am in pain, I have gained a lot of weight, my moods are too moody, and I am miserable. We did not get anywhere with my appointment because we are at a standstill. He is going to speak with a pericarditis specialist (he’s one of only two specialists in the U.S.) in Cleveland about beginning methotrexate-Treats several kinds of cancer, including cancer of the blood, bone, lung, breast, head, or neck. Also treats rheumatoid arthritis and psoriasis (a skin disease).. He doesn’t want to treat my pain because he wants to repair, not mask, my pericarditis. So, we raised my diuretic in hopes that will alleviate some pain due to water retention.

He will call me next week with where we go from here. I know some day this will all be behind me and I will have better things to write about. For now, I wait!