Luck Fupus

A lupus blog…

“…but your lipstick got me so out of breath.”

Happy Friday! It’s pretty rainy and gloomy here, but according to my iPhone it’s supposed to clear up for the weekend. And that makes me happy.

First, thanks for all the emails, comments, tweets, etc from my last post. Most days I hold it together quite nicely, and others… well, I’m not Super Woman. I used to think I was, but one day I realized I’m just human. Some days, I fall apart. It happens.

I haven’t done a Friday post in a few weeks, so I’m linking up with Joy for The Friday Five.

1.
Yesterday I saw my rheumatologist, Dr. M., and then had my infusion. I mentioned a few weeks ago that I started a new immunosuppressant, Myfortic, in conjunction with the Prednisone, Benlysta, and increased dose of Plaquenil. Well, he felt my joints, and actually thinks it’s working. There was still a great deal of inflammation, but less since I saw him last month. So he’s increasing the Myfortic from twice a day to 3 times a day. 
I got a little ahead of myself and asked if that meant we could lower the Prednisone, and, I may have been dreaming, but I’m quite certain he looked me in the eye and said…
Worth a shot.
2.
My infusion went fine, I came home and slept off the Benedryl, then got up and got ready to go see Maroon 5 in concert with Brie and Erin, a friend from my first nursing job. It wasn’t ideal to do both in the same day, but I couldn’t change the day of my infusion, and I don’t think Adam was going to change the day of the concert no matter how much I begged. 
The good thing is I get 80mg of steroids injected directly into my vena cava as a premed for my infusion, plus the oral prednisone I take every day, so I had almost 100mg of steroids coursing through my veins. I could be wide awake and jittery, eating everything in the sight at home, or go to Chickie’s and Pete’s and then off to see my second husband Maroon 5 and get all my energy out. 
I asked Dr. M with all this immunosupression if I needed to wear a mask, and he said I would be just fine. 
So, we went and had a great time. Owl City and Neon Trees opened, and they were amazing!
Sister, Sister! My heart!

Me & Egg

There are no words to describe how sexy that man is… swoooooon!
3.
100mg Prednisone = eating EVERYTHING in sight
Brie and I shared cotton candy water ice (and it was amazeballs) and when Neon Trees came on, she took the cup out of my hand and put it on the ground.
Um, there was still perfectly good water ice still in there.
I’m sure I sounded like a little kid, but I said “Why did you take that away from me?!?!?!?!”
We were cracking up.
#prednisonemunchies
4.
April is National Autism Awareness Month! PLEASE, hop on over to my sister’s blog, and check out as she blogs every day for the month of April on her journey of an Autism diagnosis for my nephew PJ. She is such a beautiful writer, and every day I’m so proud of her, her husband Pete and my Doodle, PJ. They are all so brave, and PJ never fails to amaze me with the progress he makes each and every day.
5.
Mad Men is coming back to the Boob Tube on Sunday night. Oh Don Draper, how I missed you and your womanizing ways. Definitely one of the best shows on television. And after all the recent press Jon Hamm and his man parts have been getting, well, I love him that much more!
In another life, I will wake up and look like Christina Hendricks and have the wardrobe of Joan!
TGIF!
Love you all <3

Comments

  1. Christi says:

    Super jealous that you got to see Maroon 5 last night. That was pretty much all my Delaware peeps were talking about on FB yesterday.

    I'm pretty sure Adam totally saw you in that leopard print scarf and was all, "Daaaang giiiiirl."

  2. So effing excited for Mad Men. And so jealous of your tix last night!

    hahahahah @ #prednisone munchies. No kidding.

    Great news about the joints, I hope it continues to work. Sorry you got Balki'd on the less prednisone suggestion.

    Happy weekend!

  3. Breezy says:

    LOL!! "Balki'd" That's going to be my new term when something is denied!

    I had a blast night night, even though I apparently looked really, really tired!! Love our sister time and love you!!

  4. Helene says:

    i don't watch mad men. i know- what is wrong with me. but i do watch adam levine, anywhere he will go. glad you got some good news!

  5. Balki!!!!!! I was just thinking of the episode where Coooozin Larry had to use lotion to get the ring off his fiancée's finger while she was sleeping. Or was it Balki? I can't remember. Anyway. I thought about it because my sausage link fingies almost ate my wedding ring today. I was panicking. Eeeeeek!

    Just caught up on MM last night. Obsessed. OB-SESSSSSSSED! But sadly I don't have cable. Must. Find. Friend. With. Cable.

  6. hi! am a new follower from the bloglovin linky party….hope you can visit and follow back 🙂

    http://www.prettylittledahlia.com

  7. Gwen says:

    I saw Maroon 5 several years ago. LOVE. And I don't think I even need to tell you how much I'm crushing on your leopard scarf.

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  9. Cheriese says:

    Great post lovely 🙂 How sexy is Adam?! I saw Maroon 5 in concert a few years ago, SO GOOD!
    I'm in Aus and Mad Men starts later today, I'm so exciteddddd!!

    P.S I've never heard of cotton candy water ice, but I like the sound of it!

    Cheriese xx She may be the Song that Summer Sings

  10. Jodi says:

    So jealous – I want to be at that concert. Maroon 5 is coming to Boston this summer w/ Kelly Clarkson. I need to find someone to go w/ me.

    I was on infusions and steroids for 6 months. Not fun but made a world of difference for how I felt overall. And luckily the weight/puffiness that I had goes away.

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