Luck Fupus

A lupus blog…

“Oh you know I did it, it’s over and I feel fine…”

So usually my post title is a line to a song that has to do with the subject of whatever I’m writing about (I totally stole that idea from my sister). Today I’m just paying homage to the great Dave Grohl of Foo Fighters. This song (DOA) just came on my iPod. Great tune. Fun fact: Nirvana (Dave Grohl was the drummer) got their big break after playing at the bar in Philadelphia that used to be owned by my grandfather and his brothers. It’s like Six Degrees of Kevin Bacon. Only with Dave Grohl.

ANYWAY! As I said, even though I’m not returning to work, I have a busy month ahead of me. I’m guest blogging for Jules at What The Jules and for some reason I agreed to do an August Blog Challenge with my friend Maya over at Lilies and Elephants. I’ve actually known Maya since I was in 1st grade, her little brother was my first crush. Yep, I was boy crazy from the start. Our challenge is to blog 20 times in the month of August. That’s 5 times a week. I’m not sure I can do it, but I’m not one to back down. Bring. It. On.

I’ve mentioned that I’ve starting looking into getting second opinions from other rheumatologists. It’s not that I have any issues with Dr Rheum, but after four years of seeing her, I figure it wouldn’t hurt to have another set of eyes take a look at me from a rheum perspective.

Living in Philadelphia, I am extremely lucky to have some of the best hospitals in the country at my disposal. I’m also very close to DC, Baltimore and NYC if I feel the need for a road trip. I began to research rheumatology programs at various hospitals, and quickly discovered Johns Hopkins in Baltimore was considered #1 for rheumatology.

I knew it would probably take a gagillion years to get an appointment, but why not get the ball rolling. So I called. Per usual, a recording answered, I hit the prompt for “new patient” and waited. Another recording came on. Before you can talk to a human being you have to

  1. Send a letter from your referring physician
  2. Have all your records sent over
  3. Once that is done, you email them letting them know you sent your information
  4. After going through your medical records, if they feel it’s appropriate, they will eventually call you to schedule an appointment
Yikes. In the wise words of Cher Horowitz, I felt brutally rebuffed (I quote movies a lot). Like I said, I didn’t think I would get an appointment this year, but it would have been nice to speak to someone and have him or her tell me my appointment is for June 23, 2014. Something to look forward to, you know?
Then I called the #3 rheumatology program, the Hospital for Special Surgery in NYC. They don’t take my insurance. Damn.
Yesterday when I had the house to myself, I looked at some Philadelphia hospitals. I made a call this morning and was able to speak to a human. I even managed to get an appointment THIS WEEK.
Receptionist: “I have Thursday at 2:45 with Dr. So-and-So”
MJ: “Wait, Thursday. This Thursday? As in this week????”
Receptionist: “Yeeeeeeesssssssss.”
MJ: “Golly gee, I’ll take it!”  (or something along those lines)

As I mentioned, I don’t have any issues with Dr. Rheum. Obviously it’s not her fault I have yet to find a treatment that truly works. I’ve either had adverse side effects or the medication just flat out does nothing for me. Sometimes I get the feeling that she’s nervous to try something different because of my heart defect. Unfortunately, I find most adult doctors are. 
So I’m going into this appointment Thursday with an open mind and looking forward to getting a new viewpoint. I’m hoping this doctor is willing to try something different! I read the hospital does a great deal of lupus research. 
I’m working on a rather detailed list of my complete medical history, treatments I’ve tried in the past, and symptoms I’ve been having recently.
Have any of you gone for second opinions? Anything I should keep in mind, or anything specific I should ask the doctor?
I just have this fear he will look through my records, examine me and then tell me I don’t have lupus. I once read a discussion board where this happened to someone. True story.
OK, well wish me luck! Please feel free to leave me any words of wisdom below. They will be greatly appreciated!

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