Update July 9, 2018

This title sounds like a star date and that is about right.  It feels like light years since I wrote anything for this blog and it appears it has actually been two years since I made an entry.  Two incredibly busy years kept me from blogging… let’s see, I have been teaching 3-5 AU [which requires the energy of 3 or 4 people] and continuing to work part-time at the group home, dreaming of retirement and/or a time when I can read books again and maybe write books finally, living this crazy romantic life with Bean where I bridge two cities and live out of little bags that I schlep back and forth in my car, and dealing with a crazy woman who is the biological parent of Audrey and Rusty and this is an entire story unto itself, so yes, I’ve been a bit busy.

The crazy selfish bio parent has a weird and abusive older boyfriend who attacked Rusty multiple times, we didn’t know until the last when he made the North to Alaska call to his Dad in the moment.  Skip forward to weird Trumper-boyfriend signing a DVPO voluntarily to avoid having said children testify in court, Mom saying I’ll miss you guys and moving a city away to a smaller apartment and now only seeing one of the kids for a couple hours each week.  This all happened almost a year ago and the fallout has required me to step up and our relationship to change since the kids went from being around 14 of every 28 days to 28 of every 28 days and 24 hours of every day.  We are not complaining as they are better off in so many ways, but the disappointment that we all feel for this horrible woman and her terrible choices weighs like a heavy rock we all have our hands up in the air to collectively carry.  We are trying to find a big cliff to pitch it off and purge ourselves of the dark cloud of letdown and disbelief.

RA turned out was the moderate to severe and aggressive sort that only responded to a multimodal full on assault of Methotrexate, weekly instead of bi-weekly Humira injections, Plaquenil, and sometimes steroid bumps/tapers.  I have erosions in my hands and feet after only 4 years and my feet look different with weird nodules and bunions and daylight sign on middle toes.  I don’t think about RA as much, though, and it is now just part of the landscape of my life, in fact, I would have said I was in a good chemical remission, until late spring/early summer when the Vasculitis hit.  I developed petechiae on my feet, and since my sister just spent the better part of a year slaying this particular dragon, I knew what this might be.  A routine visit to my eye doc where they found hemorrhages on my retina and I knew for sure.  Now, we have to figure out how to proceed while I do daily steroid doses that are making me a bit moon-faced already.

I did get invited to go to Boston, though, to a Co-Creation Conference [which I don’t really know a lot about so far but will be going next week, so I will fill in the blanks then] to speak to medical professionals about my RA journey.  I am so glad that I had this blog, because I can literally go back and read about what it felt like when I was diagnosed and remember some of the things I have forgotten about what it was like when I was dying a bit every day from the pain and exhaustion.

And so, halfway through a wonderful summer break when I have time to actually write a paragraph, I have an all expenses paid solo trip to Boston to look forward to and a chance to share my story, and who doesn’t love a story more than me?

One thought on “Update July 9, 2018

  1. Your writing always impresses me. Good job of covering all of the mess going on just now in so few words. I would end up writing a book. Godspeed on your trip to Boston. May you learn much & she’d a light on this beastly disease for others that are new at it. I love you and wish you an enlightening trip.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s