Friday, April 8, 2016

Halfway decent

Yesterday was a half way decent day.  Shelbie had a burst of energy and felt much better than she has in the past two months.  No hives or itching yesterday so I think that made all the difference.  She was able to do her own laundry, clean her room and cleaned out her car that is being sold this weekend...fingers crossed.   She still has a lot of swelling and pain but we meet with a surgeon on Monday to see about draining off some lymphatic fluid.  Hopefully, if it does have to be drained, it can be done with a needle instead of surgery.  I'm hopeful.

Yesterday was also suppose to be her transfusion at the hospital.  Donated plasma only lasts in a person's system for 21 days give or take.  Each month when Shelbie has a transfusion, they test her levels to see where they are.  Her 'trough' has been around 900 which isn't bad.  If your IgG, one of the immune factors in plasma, dips to 700 then you start getting into trouble.  We have a small window of time before I really need things to get worked out for the new plasma regimen.  If she gets exposed to any sort of virus, bacteria or fungus in the next few weeks, it could spark some trouble because she literally has no immune system to speak of.  She has very low immune cells, the IgG, IgM and IgA and her white cells are now nothing but abnormal, so we are living on faith and prayer that things start moving.

I'm going to take the weekend to try and get my life to resemble something I can manage again. My friend Amber sent me a little video about a woman struggling with Scleroderma.  She had a great attitude and I think it was just what I needed to watch, a little perspective to get me through this rough patch.  Shelbie will  be with her dad this weekend and the boys will be home with me.  Even Spencer is coming home tonight.  He and Sam need some mom time.  They are both in this strange place where the roads of life are converging and it's unclear which direction they should go next.  It's been the hardest to shuffle the various needs of the kids from the physical, important and urgent needs to the emotional and mental stuff that gets moved aside because they seem to be the hardest to work through.

I continue to struggle with my own stuff.  I appreciate the people in my life who allow me the privilege to suffer through.  The ones who don't judge and make assumptions about my life and the way I am handling my trials.  There is no shortage of people who have a negative opinion of me and that really sets me back.  I thought I had come so far in not letting the judgments of others hit me so hard. I guess, I'm just tired enough, they do.    It makes it really hard to write as well, especially here.  It's a vulnerable and courageous thing to share one's story on a public platform.  We like to read stories of rise and triumph.  Rarely, do people share their story of falling.  The ways they trip up.  The climb back, the course corrections, the missed opportunities.   So it goes.

Well, happy weekend to you.  I have been spending my late nights and into the wee hours getting rid of anything in my house that no longer serves me.  I had a living room sale because I was too lazy to drag the stuff out to the driveway to babysit.  Most of that stuff is gone.  I have another huge amount tonight that will take me at least two trips to the dump and thrift shop.  I'm excited to live with next to nothing.  I hate clutter in my life.  The only thing safe is what the kids have in their own rooms.  Everything else is out of here.



  1. And in addition to all this, I hear you are going to the store tomorrow for the LaBaugh's! You surely are storing up your treasures in heaven. Thank you. I won't be back there until Thursday.

  2. Decluttering is so liberating and cathartic. I love to get rid of unneeded "stuff". Hope you have a great weekend!

  3. I'm so grateful you share your trip-ups. So many things you experience and learn and share is so helpful to me when I go through my own struggles, as all of us do. I've also been able to share the honest and real views you share with others who need support. I'm grateful for you! The haters can duck an egg. ;)

  4. Um, *suck an egg...or duck an egg, when I huck it at them... lol