Luck Fupus

A lupus blog…

But if you really want to live, why not try and make yourself?

I can’t believe we are on the tail end of July.  I’m not sure where the time went, because it’s seems like I haven’t been doing anything exciting. Although I did learn how to be a wife! No, really. Now that I don’t spend my days off in bed recovering from workdays, I’ve learned the art of cooking, laundry and food shopping. Miracles do happen, folks. I’m living proof.

It’s been almost 3 months out of work.  Today I’m exactly where I was April 24th; on prednisone, waiting for doctors to make up their minds about the next course of action. I’m FINALLY taking the steps to seek a second opinion.  I love Dr Rheum, but I feel like I’m getting nowhere fast.

But, this entry isn’t going to be all whiny and complaining.  I actually have some pretty cool things coming up in the near future, and I figure I’d share them with you.

First, I have to give a shout-out to my Hubby.  He just landed a side job with a prestigious university, and I am super-duper proud of him! Sometimes I give him grief that he comes home from his full-time job and heads straight to his office to work on his side projects. We live together but don’t get to see each other. That said, he works his ass off to provide for us, and I know it will only help better things for us in the long run. Go Hubby, you deserve it!

Even though this blog mainly revolves around my living with lupus, I haven’t been shy with the fact that I was born with tetralogy of Fallot, a congenital heart defect.  I work in the Cardiac ICU of the hospital that treated me as a child (I’m still a patient, don’t tell!) and it is so fulfilling how I can relate to my patients and give parents and families hope for the future.

On Saturday, I’m participating in Heart & Mind Education Day, which is a day that was created for patients and families to stay up to date on cardiac care. It also gives them opportunities to meet other patients and families, and speak to doctors and nurses (me!).

I wish something like this were around when I was growing up, but I’m extremely grateful to be able to tell my story, and maybe make things easier for kids’ going through the same situations.  It sure is tough to be seen as different.

I’m doing a Q&A session with the adolescents/young adults, no parents allowed.  This gives them the chance to ask questions that they normally might not ask in front of their parents. Last year we covered topics from sex to birth control, having children, dating, college and the parties that go along with the college experience, and most importantly, transitioning to adult doctors and learning to manage their own care.  A colleague of mine, who also had heart surgery when she was young, took part with me last year. But this time, it’s all me!  I just hope I don’t say anything stupid (who me, the whiney brat… long story!) and they are able to take something (or many things!) away from the session.

Heartwaves.org is a site started by the parent of a child with Hypolastic Left Heart Syndrome (HLHS) and there is a possibility that I may be blogging for them in the fall and next spring. Be on the lookout for more information. But until then, check out that site as it is chock full of great information regarding congenitial heart defects, and some truly inspiring stories.

Jules, from What The Jules, has reached out and asked me to be her August blogger for her Blogger in Residency Program. I’m uber excited, Jules is an amazing writer with a huge following. I’m hoping I can do her proud, and that my writing is able to get better.

So even though I’m not working, I finally have some things coming up that will allow me to stay busy. There were only so many times I could watch reruns of Big Rich Texas (don’t judge!) on E! before I lost my mind… or what’s left of it anyway.

Love you all

Leave a Reply

Somebody’s watching me…

  • 77,552 hits

© 2019 Luck Fupus · Powered by WordPress · Made by Guerrilla