Luck Fupus

A lupus blog…

Breathing is the hardest thing to do…

After a year of blogging, I finally posted a link on my Facebook. I’m not sure why I never did. Although it does have a stigma, I’m not ashamed that I blog, nor do I write anything that I wouldn’t just say to someone’s face. Sometime’s I write things that people may take personally, and for that, I am sorry.

OK. That’s a lie. I’m not sorry. My blog is my outlet, my way of coping with everything. If I write something you don’t like, then don’t  read it.

Problem. Solved.

Ahem.

The past few times I’ve seen my rheumatologist, he’s said two scary words.

Pulmonary hypertension.

I pride myself on taking everything in stride, but those words scare the shit out of me. As a cardiac ICU nurse, I know all too well that nothing good ever comes from those words.

I have NOT been diagnosed with this (calm down, Mom) but as of right now, it’s a possibility on the table. I’ve had a bunch of scans, blood work and x-rays lately, and while everything has come back abnormal, no definitive answers have been given.

I don’t know what to think, as all of my “ologists” seem to have different theories. I know walking up the stairs is getting harder by the day and that my legs swell up for no apparent reason.

Those little piggies need some polish

A cardiac catheterization is in my near future. I haven’t had one since right before my last open-heart surgery in 1987. Not a bad run. This will give us answers, and while they are in there the doc’s can open up my lungs and remove some Nacho Bell Grande’s from my coronaries.

It’s a win-win.

Gown: Booth Radiology (just for you, Steph!)
V/Q scan. 
Sadly I didn’t get a picture of the first portion of the test with my nose clamped shut and breathing in O2 through a giant mouthpiece. 
I have been diagnosed with iron deficiency anemia. Guess I need to eat more steak. I’m ok with that. So far, no cause has been pinpointed. A few theories, but again, nothing definitive. More bloodwork tomorrow and I see a new gastroenterologist in 3 weeks to see if I’m bleeding anywhere in my gut.
I started an iron supplement, but it bound me up so bad the hemetologist said to stop taking the pills. I didn’t go to the bathroom for 3 days, and when I finally did at Brie’s house, she said my stomach looked  much less distended once I emerged from the facilities. (don’t worry, I did a courtesy flush!)
Via Pinterest
COLACE spells RELIEF.
Thankfully, instead of torturing my bowels, we are going to make good use of my port. I start iron infusions in a few weeks. 
As if I already didn’t swallow enough pills on a daily basis, Dr. M. added another immunosupressant to my regimen. Myfortic. It’s used as an anti-rejection medication after an organ transplant, but it helps with some autoimmune diseases. I’ve been on a different form of this in the past and it didn’t help, but he’s thinking in combination with my infusions, it will make a difference. 
Fingers crossed, people. Fingers crossed.

And now news that has nothing to do about my health, my mother-in-law is having a cardiac catheterization this morning. Say a little prayer for her! <3

To end, all I have to say is that I hope the Supreme Court gets this right… A clip from The Golden Girls, who were so clearly ahead of their time

Love you all

Linking up with Shanna for Random Wednesday

Comments

  1. Gwen says:

    Keeping my fingers crossed for your MIL! And as always all my fingers and toes are crossed for you. (I do like the prescription of eating more steak. haha)

    I'm glad you shared your blog with Facebookland.

  2. Helene says:

    oh man you have gone through so much. i hope you are not diagnosed with this, my fingers are crossed for both you and your MIL.

  3. Ella Ralph says:

    Gosh you do so amazingly well! I love that you remain (or at least appear to remain) so upbeat while all of this is going on. The world needs more people like you 🙂

    Good luck and fingers crossed! xxx

  4. Christi says:

    Dude, Colace is the SHIT. Literally. I love that stuff.

    So glad you shared on FB! Oh how I want to do that but I say so much crazy ass stuff that people would take personally and be offended about. Not that I care but, ya know. Whatever.

    I totally stole that Golden Girls video yesterday, hope you don't mind! 🙂

  5. Good thoughts to your MIL today. I hope you have more answers soon!

    I grinned when I saw your blog on FB yesterday. HOLLERRRRRRRR.

    Your outfit of the day is stellar, dear. You rock a gown.

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