This Is Not Happening!

Standard

Okay, I’m borrowing this title from a Season 8 X-File episode. Scully is 4 months pregnant with either an alien baby or Mulder’s genetically mutated human baby AND she just found him dead in a field, his body tortured by some really bad EBE dudes on the alien mothership. Nobody can help her. And now she’s miserable. And pissed off. So she drops to her knees, looks up at the sky, clenches her fists and screams.

I understand that kind of frustration. It’s a lot like my current lupus flare. And I’m not even pregnant.

It looked like the typical lupus rash on my shoulders. Red circles with a clear center. Doesn’t scar but it sure is ugly. Fortunately, my rashes were confined to my back and therefore, not noticeable (unless, well you get the picture). It would appear in the summer when it’s hot but now it also shows up in the winter when it’s cold. The reflection of water, the reflection of snow, the reflection of the reflection, blah blah blah. I’m photosensitive. My little SSA antibodies like to go wacko on my skin.

Anyway,

It started in February. My rheumatologist thought it was nothing to worry about. She was wrong. It spread to my entire back. Then it moved to my arms, legs, feet, face and neck. In March and April I had tried 20, then 40 mg of prednisone. The CellCept I’ve been on for 24 months didn’t work either. Dapsone and Plaquenil floated in my bloodstream totally oblivious and indifferent. So I tapered down on the steroids because they were not helping. Instead they made me psychotic, moody and paranoid. I tapered down just fast enough to throw myself into adrenal insufficiency. You know, the feeling like you’re gonna have a heart attack because you can’t breathe and you’re gonna pass out and/or throw up but you’re too tired to do either and you’re sweating and forget it I’ll just die on the staircase, hope the cats will dial 911???

I hate it when that happens.

Anyway … the rash. Now it’s April and the rheumatologist looks at the rash and says “Oh dear. It’s much worse” and sends me to the dermatologist. He thinks it’s vasculitis and carves out a chunk of skin on my shin, sends it off to pathology, slaps a band aid on it and says he’ll call me in a week with results. In the meantime, I’m taking pictures of my legs and feet on my cell phone and sending them to my sister in Cape Girardeau. Then I call her asking “Is this getting worse?”

But then the plot thickens (and possibly turns into an X-File episode).

Now it’s May. The dermatologist says it’s not vasculitis. It’s just subacute cutaneous lupus. Not to worry. Good news for him. Bad news for me because now the rash is on the front and back of my thighs, stomach and butt! Why is it creeping on my butt because I don’t walk around with my bare ass hanging out. He says I’m really photosensitive. Alrighty then … will somebody give that message to the auto-antibodies attacking 80% of my skin because I’m wearing clothes with an SPF of 50, really expensive sunblock, and riding in a car with $400 tinted windows and it’s not getting any better!!! It hurts like a very bad sunburn because it FEELS like a very bad sunburn. I’m turning into a tomato. Or a fire engine. Or a big, red prednisone head.

Two Important Lupus Rules:

1. Don’t talk on the phone with your doctors when you’re hysterical. You won’t make sense and can’t remember what they are trying to tell you. And then you get pissed off and call your friends, who think you’re nuts because you are.

2. Step away from the computer and your Google. If you cannot step away from the computer, do not Google lupus, SLE, etc. Remember, you’re nuts.

If you’re still reading this, bless your heart.

When doctors make an appointment for you to see a more special specialist than they are … that’s called “You’re Really F&%^D And Hopefully This Other Guy Can Figure Out What To Do.” (Just try and find a CPT code for that!) Then you wait a couple months to get in. That’s what happened to me in June and July. I waited and watched my skin turn even more red and then peel a couple times like snake skin. Still taking my medication like a good girl. Still sending cell phone pictures to my sister. Still working full time. Still wearing the SPF stuff. Blah Blah Blah.

The Big Deal Lupus Doctor appointment goes without a hitch. He’s a great guy and is very smart. More blood tests. Now there are more options, like plasmapheresis, IVIG therapy, stem cell transplant. He tells me “no more pills for you.” My doctor decided to start with IVIG therapy. Outpatient infusions at a hospital. 1-2 days a week for 3 weeks.

Last week I was feeling pretty good. No big bad prednisone side effects at the moment, my skin isn’t looking as red as before and I think I can shop at Target without carrying around a SPF-50 umbrella to protect me from the florescent lights. But today the rash is getting red again. Crap. CRAP!! I know this is not an X-File episode and I am not a pregnant FBI agent, but ….

THIS IS NOT HAPPENING!

Advertisements

2 responses »

  1. Oh Crap, Susie!!!

    I thought that was supposed to be good news when I read you were doing the IVIG (when did you start the first dose?) instead of the pheresis or stem cell transplant.

    PLEASE tell me that it’s not getting worse again…. I think I’ve burned thru too many candles praying for you that I’m gonna set St. Ambrose’s church on fire if I’m not careful.

    All my love,

    little bro

  2. Yes, said the sister in Cape Girardeau, if this wasn’t all so frustrating and true it could be really funny….although that is how we cope in this family by making fun of the things that scare the crap out of us. BTW – I do have some lovely photos I can share with anyone who wants to see evidence that she did send me pictures on my cell phone. Speckled toes and broken toes…..lupus is an amazing illness.

    Sue keep me laughing while I am house bound with a swollen knee! My God reading that was funny…and awful….bless your heart. Judy

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s