Luck Fupus

A lupus blog…

It’s never lupus…

Now that I’ve made the conscious decision to blog, my mind has been reeling with ideas for posts.  Because of the whole attention span of a gnat problem, I figured I’d start at 2-3 posts per week, and if I’m able to blog more, than great!  I’m really excited to get this thing rolling, and even more pumped to make it pretty.  I’ve been looking through a ton of blogs the past few days, and I can’t believe the amount of work that goes into getting them personalized.  That said, with my ADD, the blogs that were visually appealing kept me reading instead of hitting the browser back button.  Hopefully, within a few weeks, a personalized header on my own blog will entice people to keep reading.

In my first post, I noted that it’s been four years since I began experiencing lupus symptoms.  Looking back and knowing what I know now, I was having symptoms prior to that time, I just didn’t know better.  I remember during my first year of nursing school having a span of a few weeks of severe fatigue.  I had broken up with my boyfriend and moved back with my parents after 5 years out of the house, I was in school full-time and had a big priority of partying like a rock-star.  I did go to the doctors for blood work, but everything checked out fine, and it was chalked up to just all the stress in my life.  Fast forward to a  few months before my wedding, and I started having these weird food intolerance’s to things that had never bothered me before.  Eating a salad would give me horrible stomach cramps and bloating, and then eventually would make me throw-up all night.  I can still remember the Hubby begging me at our wedding not to eat the salad (but it looked so good!) so I wouldn’t get sick.  I obliged, and had one of the best nights of my life!  That said, I ate salad on our honeymoon and spent a night in bed with stomach cramps and throwing up.  Fail.

After that fateful morning when I woke up looking like the Michelin Man, more symptoms appeared.  I got this awful, red raised scaly rash on my cheeks and across my nose, on my eyelids, and all down my neck.  It actually hurt.  I tried to use St. Ives Apricot Scrub to try and scrape it off.  Nope, didn’t work.  One night shift at work (I’m a pediatric nurse) I asked a surgical resident (ie, total. douchebag.) what he thought, and he jumped back 4 feet and said “Yeah you might want to get that checked out.”

So when my shift ended the next morning, I went straight to my doctors office.  The nurse practitioner took cultures from the rash, the inside of my nose, my throat and drew blood.  She told me it looked like MRSA, so she wrote me a script for a topical antibiotic, and said to stay out of work for a week.

Ew. MRSA?!?!   On my face?!?!?!  I swore I was always meticulous taking care of my patients who were on infection precautions.  My brain was rewinding to the week before, helping turn a patient who was- EEEEK! positive for MRSA.  I remember having the worst itch on my nose, and using my shoulder to scratch the tip of my nose. DAMMIT!  How stupid could I be?  I left, got my prescription filled, slathered that antibiotic on my face, and finally went to sleep.

A few hours later I woke up with my face swollen bigger than ever.  Off to the emergency room at the suggestion of my sisters boss, a pediatric ENT doctor.

The 18 hours in the ER were a nightmare, and I don’t dare waste the energy to recall the details.  The next few weeks were made up of countless doctors appointments, trying different antibiotics even though the cultures didn’t grow back anything (No MRSA Face!), MRI’s, CT scans, X-rays, and blood work.  No one could figure out what wrong with me.  Finally, one of the specialists put me on a prednisone wean pack, and after two days I woke up looking like my normal self and not covered in rashes.  Problem solved, must have been some weird fluke thing.

Yet a week later, a few days after I came off the prednisone wean, I woke up puffy and covered in rashes.  What. The. Hell.  I was so frustrated I had the Hubby drop me off at the emergency room on his way to work.  I didn’t know how I would get home (Brie to the rescue!)  I just needed answers.   I went to Cooper University Hospital, was taken back right away, and a few minutes after being examined, the resident asked if autoimmune diseases ran in my family.  I didn’t know the answer to that, but pretty much every other debilitating disease runs in my family, so why the hell not.  They made me an appointment for a rheumatologist a few days later, and sent me home high on Benedryl and a with prescription for more Prednisone.

I spent the next few days Googling autoimmune diseases and stumbled on Systemic Lupus Erythematosus.  The more I read, the more I was convinced.  I was completely freaked out, but I’m one of those people that needs to know exactly what is wrong so I can deal with it and move on with my life.   At the rheumatologist,  we discussed Lupus, and after a thorough head-to-toe examination, she said I showed many of the signs. Malar rash- check.  Swollen joints- check.  Ulcers in my nose and mouth- check.  Low platelets- check.  Protein in my urine- check.  I was sent for more blood work, more blood work again, went to a few more specialists, back to the rheumatologist, more blood work, a skin biopsy, and after a few months of those fun and games…

Comments

  1. Breezy says:

    Are you sure it wasn't MRSA…all over your face?

  2. MarlaJan says:

    And in my nose, and down my throat…

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