Royal Pains

I’m going to die like Elvis.

No really.

That’s how this is all going to go down. So to speak.

I think he'd crawl back inside of me if he could

I’m finally peeking my head up here on my blog after a week of being ‘sick’ – which is different from my usual ‘sick’ where in I just take all my medications and trudge through life hoping things get better with every lab test. This week we decided to add ‘gastro’ issues where phrases we haven’t used since the kids were in diapers like ‘Aww, she made it through the night without pooping her pants!’ were busted out.

Oh don’t look at me like that, you’ve read this blog before. You are not shocked or surprised I went there.

So I’m now on day EIGHT of said issues and I have another round of IVIG treatment going in me as I type (one-handed). I’m just glad I made it. I’ve been sleeping in the bathroom for over a week so you just never know what state they’ll find me in come morning.

All kidding aside, this is just one more of those things someone with a chronic illness has to deal with. You see, we don’t even get sick like a normal person. Nope. It’s just not that easy. If you have an auto-immune disorder, like I do, you get the same colds and flues as everyone else, but you get nailed.

That is, if what we’re dealing with here is viral. The doctors think it might be. But, that’s another story. (helllllo it started with my increased chemo shot).

But back to my point: as a family with kids you can imagine the germs that go around this house. Which means when someone gets the sniffles, I get pneumonia. When someone gets a 24-hour stomach bug, I get an eight days and counting ‘bug’ that will probably land me in the hospital on bowel rest…I’m just guessing.

To say that I’m frustrated is probably an understatement but I’m trying to keep it in check. We had just gotten word from the doctor that my labs were starting to improve. I was just getting comfortable with the idea of my limitations, and finding ways to work around those limitations. Sure I had been put back on daily steroids, but I had also been given permission to diet. I actually had TWO WEEKS OFF between treatment rounds and was really excited about it…until halfway through I was stricken by what we’ll call the Elvis disease.

The scarier scenario that I am doing my best to ignore – this is my body’s reaction to the increased methotrexate injection and in order to keep my inflammation down I need this dosage.

Hmmmmm, inflammation that gives me strokes, TIAs, kidney issues, liver issues, and potential continued organ loss and horrible, constant pain OR horrible and uncontrollable diarrhea and vomiting.

What to choose…what to choose…tough decisions.

Yup, I think going out like Elvis is my best bet.

He is a legend, after all. And the King.

 

Comments

  1. Suck it, Lupus. Ugh.

  2. Inflammation can go eff itself. Seriously. And the drugs that make people as sick as the disease itself are also on *my list* today.

    As soon as my insurance issues get sorted out, I’ll be able to write about what is happening with my health, too… until then, just know that I am commiserating with you and wishing all the best for your health and family.

  3. Well that’s a balancing act. Ugh! I hope it is viral, and that it goes away SOON!!!

    The world looks very strange when you spend a lot of time on the bathroom floor. Ah the fascinating times noticing all the details of the mold in the tile grout.

  4. I have fibromyalgia. It sucks. Ditto on the getting floored with the simple cold and flu. I hope you feel better soon!

  5. Fuck.

  6. Sadly I’ve often had the same thought. It usually happens after my legs have gone numb from sitting so long. This last flu/gastroenteritis downturn I said eff it and grabbed some puppy pads and laid down in bed. Seriously those things come in very handy! IBS and gastro-anything is awful to live with. As if I don’t deal with enough assholes in my life already.

    I think we should start a program for people like us where we could win a bathroom makeover where the toilette gets made into a throne.

    I’d rather piss myself laughing than shit myself crying.

  7. Argh… I’m so sorry.

    My meds make me very suceptible to fungal infections so when I go to the gym I spray everything down and clean it before I touch. I know people look at me like I’m crazy but anti fungal meds are tough on your liver..

    It’s like putting your finger in the dike. (and shut up… not that kind of dike)

  8. Fogspinner says:

    I feel your pain.. at least on this one. Since my transplant and now immune suppression I have only had one cold (thankfully) but it lasted 3 weeks. I am a whiney little ****** with a head cold, ask anyone. Ask my BF from 20 years ago, he’ll even tell you! :-)

    I went away to a DR appointment only to come home to a hubby with a “cold” who SWORE to (and I quote) “hole up in my room until it is gone”, who instead slept on the couch and HACKED all over my house. *deep cleansing breath*

    Him, better in 3 days
    Me, 3 weeks.

    It is so hard to avoid these bugs, I wish you all the best! Speedy recovery and all!

    PS I used to sleep on pillows with extra blankets when I had to spend night on the floor. ;-)

  9. Oh for the love of fuckall … I think you’ve suffered enough. Really. I’m join go fly out there and kick Lupus’ ass for you. Or send you more Ginger Scones. Just for you I’ll write the blog post I’ve been meaning to write for a while that will — hopefully! — give you a ray of hope and sunshine.

  10. So sorry things took a turn towards… Elvis. And older Elvis, not young Elvis, too. Nobody really likes older Elvis, do they?

    I hope it was just a bug and not a reaction to the medication.

  11. Dude, that sucks. I do think I remember hearing you’re on the mend however. Also, I would love to send you a sparkly Elvis jumpsuit (if I only knew where to find one). Who can’t laugh( or smile) while wearing one of those things. Keep on keepin on, mama!

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