Tuesday, July 25, 2017

RA - Lung Take Two

Ok where was I....oh yeah.  I was going to talk about what the doctor said at the walk-in when I went for an xray, but looking back, I see I already told you about that.  What I didn't say was that Young-Doctor asked if I would give him permission to review my test results from the week before when I was in hospital.  I said sure why not.  Another set of eyes never hurts.  This was on Monday, week ago yesterday.  So on Wednesday, two days later, I get this phone call from them saying they had set me  up for a CT the next day.  "What for?"  She, the nurse, said that the doctor wanted one done so he could compare.  I told her, seeing how I just had an HRCT 8 days previous, unless I have some sort of flesh-eating disease, I highly doubt there are going to be many changes for him to see.  My doctors are on top of this.  All I wanted was an xray, and that's what I got, thanks.  I don't see the need to go through the expense, I doubt my insurance would pay for another one that quick.  Especially when the last one was an "HRCT" not just a measly old "CT".  No.  I called the hospital and canceled.  They were kind of put out.  Sorry, about that.  I'm not putting myself through the expense nor the procedure just so some doctor who is not on my care-team to have a looky loo at something he's never seen before, probably.

Anywho-  so umm yeah, I'm coming  up on two years now since ILD diagnosis.  I remember that day...."2 1/2 to 4 years depending....."  In my own, medically-uneducated-opinion, gauging it by comparison of how I feel today, to how I felt just a year ago, I think I got another year in me.  Maybe.  We all know this could change on a dime, in a moment.  I know I can feel great right now, and 10 minutes from now, feel like I got run over.  There's no rhyme or reason to this, and it is so unpredictable, what's the point in trying.  That all being said, if I can stabilize now that the clots are gone, and just stay where I am right now, I can make it a while.  I still have hope.  Its when I sneeze, or cough, or take a deep breath, that I'm reminded that my lungs are turning to stone.  When I eat, even the smallest meal, I'm reminded.   Eating is not the pleasant experience it used to be.  My belly is so big, it is pushing up into my lungs, even when its empty.  When I saw Dr. Eye, my rheumy, last week, that's the first thing she noticed....

Dr. E - Wow! (pointing at my belly)

Me - I know!!!  I feel like an alien!  (And she begins gently pushing on it)  I really think I have a hernia sometimes.

Dr E - No I don't think so (now she's examining my legs), this is fluid.  There's some fat too, but mostly this is fluid.

Me - Its bigger at night by the time I go to bed.  I bloat during the day.  When I get up in the morning, my belly is almost normal, almost.  And my legs, are 1/2 the size they are by now, when I get up.

Dr. E - mmmm....yep.  This is fluid.  And its all due to the prednisone.

Fluid meds, out of the question.  I already battle leg, hand, and foot cramps at night due to the prednisone, and that's WITH potassium supplements.  Diuretics are known for depleting potassium and cause leg cramps.  I'd never be able to sleep.

I look deformed with this huge belly, little bird legs, normal arms, and a prednisone moon-face.  I've often wondered how many times people look at me and wonder "she's a little old to be having a baby!"  ah well....it is what it is.  I used to be cute, I have pictures and witnesses to prove it.

But as for the lungs, I lost a ton of ground with the PE.  I'd love to go back to where I was before that, but I know that will never be.  Sometimes it crosses my mind before I go to sleep at night, maybe tonight is the night.  Maybe I won't wake up this time.  Well, I'm ready when He's ready.  He and I are ok, we're tight.  I've got a couple of pets on the rainbow bridge waiting for me to cross, and I've got my loving grandmother and my mom waiting for me.  Its going to be ok, even if its not ok.
And there are the RA eyes.  They run like a poodle.

In other news

Did I tell you the Mr. was cutting the grass, the mower threw a rock and busted out my back window in my car?  That happened two weeks ago, the day I got out of the hospital.  Anyway - got it to the glass replacement place today, took a little bit to scrape up the money ($220).  I only have liability coverage since the car is paid for, so its all on me.  So I got it to the shop today, I've been driving the truck ( I call it the tractor), and on the way back to work (The Mr. drove it to the shop and I picked him up), I get a call from them saying that the window had arrived.  However, bad news, the box has the right part number on it, but the wrong glass in the box.  There was some mix up at the warehouse, or distributor or where ever they order them from.  So its going to be tomorrow before she's ready.  sigh.  well, anyway.  it is what it is.  I'm just glad to be getting it back.  Seems like every 9 months or so, something happens and I'm bumming rides. 

Well, lunch break is over.  Time to get back to work.  Ya'll be sweet.


PS...I just stumbled on another really good "Chronic Blog" .   Ya'll hop on over there and give her a look.  Chronic Mom

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