I need Bruce Lee to come back from beyond and kick my normal’s butt. Do normals have butts? I’d ask but we’re not speaking.

Okay, I’ve been away a while. Some of it was due to these freaking diseases I have but mostly, it’s because several months ago, someone called me a writer and it freaked me out – totally messed with my head.  I’ll share more about that in another post.  Today, I need to scream about my stupid health (or lack thereof).  I’ve had the pleasure of being jacked up on steroids for that past several weeks, but now, it’s like I’m being punched in the face by my illnesses.  And not some wimpy punches either.

For the past several months, my stomach would send back most anything I gave it.  Steroids made it stop doing that so I’ve been prescribed quite a few this month.  This is fine by me (not the stomach thing, the steroids), because steroids make me feel like I’m a normal person.  Maybe one a tad strung out on speed but still, mostly normal.  Yay, science!

I’ve been living it up.  I needed rest breaks and naps, but still, I packed everything I could into the past 20 days.  At some point, I started accepting this active me as my new normal.  That’s such a rookie mistake.  I know it’s not real – it’s not my first rodeo.  I’ve spent so much time traveling this road, it should be named after me – but this active version of me  is closer to the person I think I am, so, my brain is an easy target.  Plus, this version is way more fun.

What made matters worse (or better – it depends on who’s writing the history), my doctor asked me to continue an oral dose of prednisone even after I finished a dose pack (translation – more steroids).  This kept me moving longer.  My new normal became even more real.  As the dosage got smaller, doing things became more difficult.  Around Thursday, I knew I was running on borrowed time.  I was pushing through a lot of discomfort to keep up this facade.  Friday was worse but I kept pushing.  I didn’t want to say goodbye to this new normal.  We were friends.

By the weekend, the party was over.  Yesterday, I left my bed three times for a whopping total of about 30 minutes.  Pain is intense, constant, and everywhere.  From fingertips to the bottom of my feet, it feels as if someone took a syringe and injected a liquid form of pain into my veins.  I can feel it moving.  A rash has appeared on my forearm, lower back, and the back of my legs that feels a bit like a burn but itches like poison ivy.  A bursa in my left hip is inflamed   Both legs have shin splints.  My sinuses feel infected but they’re probably just irritated.  My stomach and esophagus, which stayed inflamed even with steroids but calmed down enough that I didn’t notice, are now very angry so the nausea and inability to keep food down is back.  My brain is tired, sending words out of my mouth as a stammer like it can’t quite make the right connection with my vocal cords.  There’s a tremor in my left arm that causes it to suddenly fling about like it’s one of those blow-up air Gumby things in front of a furniture store.

That's the one.  Thank you internets.

That’s the one. Thank you internets.

 

Yesterday, I grieved.  I wept like I had lost a beloved pet.

Some of the intensity is due to my pushing to keep doing things after my body has screamed for me to stop.  The part of me that wants to enjoy life is louder.  The part that has Nike ads ingrained into it is also yelling, “Just do it!”  That eventually turns into, “Stop being so lazy!”   Like lack of desire is my issue.  It’s not but guilt is and I’m easily played.  Even if I remind myself of what’s to come, I still forge on like I can alter it.  Maybe, someday, I will.  See!?  I’ll never learn.

This intensity will last a while (could be weeks), then everything will calm down a bit and I’ll be back to a few productive hours here and there.  Rest helps – like the Rip Van Winkle kind and, of course, ump-teen-thousand pharmaceuticals.  So, I’m in rest mode.  This will be my normal for a while.  I’m not nearly as friendly with this normal.

I’m sharing this because I somehow want people to better understand (not pity – geez, I hate pity) what living with chronic illness can be like.  Some days can be awesome, some suck, and some you honestly aren’t sure how you survived.  I’ve had lots of days where I’ve had a few hours of great, followed by a few hours of full-on crap – you can really never be sure what is coming or when.  I’m fortunate enough to have family and friends that get that.  I can’t imaging how hard life would be without that type of support.  If you have a friend with these types of struggles and you don’t understand, ask and try to keep an open mind about what they have to say.  I can imagine that this is difficult to grasp for a healthy person.  Oh and if you have time, help them with their laundry.  Ok, that last one might just be a me thing.  I really need for someone to come over and do my laundry.   I was too busy playing to actually accomplish anything productive during this round of steroids.  Oops.

 

American German – language lesson #208 (I’m seriously making these numbers up)

Ich habe Kopfschmerzen. (ick hab-a coughs-mare-zen – Throw a tiny p sound in coughs before the f sound…or not, coughs is probably close enough) – I have a headache.  I forgot to add that to the list of total crap my body is dishing out to me today.

Comments

  1. I think the whole steroid issue is kinda interesting. My mum has suffered with RA since she was a child and the doctors refuse to give her steroids because they say it will shorten her life span. However as my mum points out time and again “what life?” If she can’t move, or get out of the house. Surely it is quality over quantity?!
    Hope you are feeling as good as you can soon
    Lauranne recently posted…Dog walkerMy Profile

    • Julie You Jest says:

      That’s so true! Early years, I was prescribed a lot of steroids but after 13 or so years, the doctors got all stingy with them. They do have some horrible long-term-use side effects but they make life so much better (not perfect but certainly a higher quality). Why can’t someone invent a steroid without the side effects? Who’s working on that?

  2. I can’t even tell you how excited I get when I see one of your new posts in my inbox. Sorry you’re feeling cruddy again. :(

    I’m sure you can hire someone to do your laundry.
    Marjorie McAtee recently posted…I’m Actually Looking Forward to My College Reunion, If You Can Get Your Head Around ThatMy Profile

  3. I have been in your shoes. Those bastard shoes suck. I don’t pity but I can relate. No one wants pity. I know I hate it. I always hear people say, “We do what we can.” But what happens when we can’t?? But REALLLLLLY still want to? There is no pretty pinterest saying on a picture of a tree for that one.

    But maybe we could make one with the gumby in the background. ;-)

    Hope your symptoms get better.
    Woman_on_Pause recently posted…Friday Fictioneers – Going BackMy Profile

    • Julie You Jest says:

      “REALLLLLLLY still want to” perfectly describes my predicament! I’ve tried to come to terms with not being ABLE to do what I want or even need, but I still really WANT to do it. Since I’ve lost 20 lbs (because food doesn’t stay in my body) people keep saying, “But you look great!” UGH! If one more person says that I look great, I’m going to rip off my leg and beat them with it. Not really. I’ll just smile and say, “Thank you” but secretly, in my mind, I’ll be swinging my severed leg at them. We should put THAT on pinterest.

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