MoonBunny999's Journal

This describes my week so far, in a nutshell.  Saturday night, after feeling shaky and chilly and achy all day, I saw red poop in the toilet and KNEW I was beginning to get ill from excess porphyrins coursing through my veins.  UGH!  I immediately started hydrating and taking my porphyria potions.

On Monday, my GP ordered a urine test to check for PBG and porphyrin count.  My porph count was "24 units" (which my endocrinologist's office called "negative" though I didn't speak to the doctor yet).  Urine tests are not reliable, though, depending on which type of porphyria you've got.  So, although this was my first test ever, it sure as shit isn't going to be my last!  (Pun intended, and if you've ever had a stool sample you should know what I mean -- heh heh.)  I also had a liver panel done, and things seem decent so far.  And I've got an appointment for the cardiologist on the 28th, because of the horrid chest pains.  I'm sure nothing's wrong with the old ticker, just have to rule out the worst of it.

 On Wednesday, I was still feeling like ass, but started my first session of physical therapy.  It was just an evaluation, nothing too harsh.  My PT's name is Lorraine; she's blonde with tan skin, and wears lots of gold jewelry (and diamonds on her fingers).  I immediately liked her friendly, yet no-nonsense and non-judgmental manner.  I think we're going to do well together, but let's see how I feel about the process in a few weeks after I've been pummeled to death! :)  I also got to visit with a good friend of mine, who I hadn't seen in months.  I told her about my spinal issues (which I now know is degenerative spinal disc disease), and the porphyria.  She took it awesomely.  I hope everyone is as cool about it. :)

We also made an appointment for the nutritionist to figure out the best way for me to eat around my new restrictions, but that's several weeks off.  I don't know how I feel yet about my nutritionist.  (He seemed OK on the phone, but you never know!)

I am starting my Actos probably next week after the cardiologist, or at least after speaking with my endo.  We'll see how things go.  It has been one hell of an exciting week! I'll write more later when something else happens.