Luck Fupus

A lupus blog…

The glow that the sun gives right around the sunset, helps me realize this is just a journey…

<— ballin at chemo last Friday

As I write, Andy Grammer is performing live on the Today Show. I had this post titled with a line from a different song (a bit more of a depressing line), but hearing Andy singing has changed my mood, and in turn, changed the tone of this post. Music truly is my therapy.

It’s been a trying summer, 2 months since my last post. I use this space to vent about the shitty aspects of life with multiple chronic illnesses, but I don’t like to air dirty laundry in my personal life. I’ve talked about what’s been going on with very few people, but I guess it doesn’t take a rocket scientist to figure it out. There’s been a lot of tears, many lonely nights, and I really needed to unplug from everything for awhile. If you’ve been waiting for a post, an email, a text from me, it’s coming. Eventually…

For now, I’m back, bitches. (I know I’ve said this before, but I hope it sticks!)

Today is August 1st so you know what that means- it’s the happiest month of the year

MOM

Yes, I’m about to turn 35 and I still celebrate for an entire month. No shame in my game.

3879342-2025735268-party

 

In honor of the month marking my 35 years on this planet, I have something exciting to announce.

I WENT BACK TO WORK! That’s right, you read that correctly. But Marla, how can you care for patients when you’re so susceptible to catching every bug you come in contact with? After 4.5 years on disability, and thinking I’d never find a nursing job where I can take care of patients and not put myself at risk, the employment Gods looked down on me and granted my wish.

Two weeks ago I started back at CHOP as a Telephone Triage Nurse. Once I’m off orientation, I’ll be able to work from the comfort of my own home and field calls from patients and caregivers. You think that sounds easy? Try assessing a patient over the phone for a rash that you can’t see, or figuring out if a parent needs to rush his or her child to the ED by using your nursing judgement and listening to a few seconds of the kid’s breathing. All the while typing, and talking, assessing, researching, asking the right questions, and maintaining composure. It’s a bit intimidating, but I’m looking forward to the challenge. Plus, I get to do it from home, yet still interact with patients and familes. I’m so happy to get back to doing what I LOVE, and I’m stoked to be doing it at CHOP.

So so short, but I’m off to WORK!! Hehehehe, I love the way that sounds. More to come later this week.

Love you all <3

Comments

  1. YES! Month of Marla!!!!! Lunch or dinner with you and Brie and me?

    I’ve been thinking of you but did not want to be up your ass like how are things / what’s going on / blah blah. I hope you know I’m always here and thinking of you and relying on you to let me know if you want to talk about anything.

  2. Tasha says:

    I am so glad you are back!!! I love reading what you have to say… it puts words to my feelings about this Lupus shit…. I have been doing pretty well and actually getting off lots of meds and feeling a lil better… hopefully you get feeling better too!!! Enjoy being back at work!

  3. Ruth says:

    I hope you bring comfort those on the other end of the phone. Best wishes on the new job!

  4. Jennie K says:

    I’m so sorry this has been such a trying summer. I know you have a wonderful support system but I’m always here to talk. I actually has some questions for you Bc I’m BEYOND frustrated with the lack of aggressiveness my dr is taking with me. My autoimmune shit is out of control and its flaring my Fibro. dr e. Was blunt with me and said she isn’t sure what to do with me, I don’t fit in to one box and she isn’t thinking outside of the box, I’m the one pouring myself over research of what specific cell targeted biologic I she will try next. She won’t do cytoxan. I don’t want to do it but FFS lets just go nuts and she personally can’t squeeze me in till September 13, so I asked to be put in the cancellation list. I’m dying in pain all of my symptoms look like I have RA/lupus/raynauds/Fibro and all the symptoms of sjogrens (but I genetically tested negative being part of a lupus study witn23 and me and the human genome project).
    Anyway a had spinal surgery and I JUST got cleared to restart my Metho . In stead of fun day like taco Tuesday’s is, chemo Tuesday. It needs a more clever tuning name Lol but I’m at an all time low. Ok enough bitching from me lol I am beyond excited o hear you’ll be able to take calls from home and get to use your bad ass nursing skills to access patients. You’re nothing short of spectacular when it comes to nursing. And I know for me and even more for you, your own health gives you greater insight to individualized tools. I know you will do amazing, don’t feel intimidating! I know you have got this!!! Congratulations. And if we could message or even text some time I’d really appreciate it. You
    Understand and have gone through so much more than I have at this point and I trust your feelings and judgements. No pressure, you
    Have enough in your plate but any time would be amazingly appreciated. It was wonderful to see an update! And you look great!

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