I love this little guy.  I relate to him in that I feel the nervous excitement about getting to the top and finding everything we needed to be healthy again.  But there is that tiny bit of fear when you can’t see.  

Keep it tiny, and climb on.  (And the steroids make me feel a little like a rollie polie lab puppy sometimes), yup,  I love this little guy.

I can’t report that things are getting much “better” yet, although the massive amounts of steroid they are pumping into me are helping a bit with the rash.  They needed to see me respond somewhat to it, so we can move forward with Photopheresis which starts today, so that was good news.

Yesterday was probably the busiest, most difficult day so far, I was so grateful to have one of my besties.Julie, surprise me and hold my hand.  I had another IV placed I the morning, then a long CT of my chest and abdomen (they found a fungus brewing in there they need to get to).  After the CT’s they wheeled me around the corner to an OR to have a Central Line reinserted in my chest.  I thought my line and I had parted ways months ago, but alas, we have been reunited.  BIG POKE (with sedation though, much easier to handle).  It really makes everything so much easier and no more IV’s, everything going in and coming goes through the line.  Even my 4am bloodwork, and the newest addition blood sugar and insulin pokes. 😖 I had a wee rest after that  

 Today started with a sinus CT (still trying to find that fungus) and I will start the Photopheresis.  The Dr came in to explain how that goes yesterday.  Basically, I am hooked up with my line, they take out my blood and spin it to separate it. They collect about a cup of white cells, and inject them with a medication that freezes them, and reintroduces them to show the other cells they are not working and unhappy cells.  This essentially trains the extras to calm down and stop fighting.

We are totally in the dark so far with regards to how many treatments I’ll have this week, or next, which can be frustrating because I feel like I’m affecting so many others.  I have a dear friend flying down from Ft. McMurtry to help with my “caregiver” role, and we still have no idea if I’ll be released to the apartment I have lined up, or have a break and end up going home for a few days after 4 photopheresis treatments.  We just have to keep putting those feet in front of each other.  And keep the faith.

I’ll leave it there, with a link to my song of the day.  It’s wrapping me with inspiration and fight.

Peace & Love

Trish xo