Friday, June 10, 2016

On the horizon

I am finally coming back to the surface of life...slowly, after a debilitating round of steroids for Lupus.   People ask me what Lupus is and I really couldn't tell you.  I've only known I've had it for a year and I haven't read up on it.  I just know it makes you feel like your dead but still in pain.  A painful dead kind of thing.

And...I know that once you have been diagnosed with Lupus, no matter what you go to the doctor for after that...they will blame every single symptom or illness you have on Lupus.
      "I have migraines."    Yep, that's Lupus.
      "My left toes just fell off."  Yep, that's Lupus...you're having a flare.
      "I have this growth the size of a basketball growing from my elbow, is that normal?"  Yep, that's just Lupus flaring up.
      "I have this urge to bark like a dog when I walk past a fire hydrant."  Yep, that's your Lupus.  You must be flaring.
     "I sometimes have this break with reality and I think I'm a pirate and walk through the grocery store saying...Aye,Aye Matey!"  Yep, that is definitely LUPUS!

I don't get it.  Must be Lupus.

Anyways, where was I going with this...

Oh ya, we've got some exciting things on the horizon.  I'm working on a new job prospect that would allow me to quit my half a dozen part time gigs which would make me the happiest creature on earth. That would bring my job collection down to just three! Instead of nine. Yippee.

Though, I have this horrible habit of counting my chickens before they hatch, putting all my eggs in one flimsy basket that has a broken handle, I've probably jinxed myself now.  But, what the heck.  If it doesn't work out, so be it.  Can't blame a girl for trying.

The one thing that is going to work out though is sort of exciting, in an introverted kind of way...I was asked about a month ago, if I would consider being on a Panel at a large hospital in a neighboring town to help them and their providers learn better ways to handle patients, provide empathy, create a more healing environment from a patient /provider stand point.  I do have some thoughts and ideas in this area...just a few.  So, I am thinking about this a lot.  I'm nervous.  I tend to just keep to myself but it might be a good thing for me to do.  That's coming up in August.

In just a few weeks, Shelbie has another PET scan to track her granulomas and lymphadenopathy.  If any of them have grown at all, she will have to have surgery again.  At least that was the plan 2 months ago.   I don't think the transfusions at home are working at all.  She spends more days sick than she does feeling well.  It's sort of a joke so we will re-assess that again.

 


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1 comment:

  1. That sounds like some great opportunities, Kath! I really hope they work out for you! And, praying for no surgery for Shelbie.

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