Cute Puppy

So I needed to post a picture that would make me smile. Oh my gosh...so adorable. Nothing like a furry little ball of love to bring some happiness to a place otherwise bereft of joy.

It has been very rough around these here parts lately. Since Nick has been out of the hospital, we have been busy going back and forth for his appointments 2-3x/week. They are basically all day affairs that are physically and emotionally draining for me and for Nick in one way or another.

Just the other day as Nick & I sat in the crowded "PICC's & PORTS" waiting room, we saw a really cute little girl who was there with a family member. She was skipping and twirling about the place, oblivious to the pain and suffering in the room. I said to Nick, "I really miss my little kids." They have so much joy and happiness in them. I remarked that the 2nd floor clinic could sorely use some joy in rather large doses! They need a clown, or some dancers, or a parade to come marching through there one day. At first there would be shock and then there would be smiles, and chuckles and actual moments where all could forget what a freaking hell their lives have become...or is this just me projecting my own feelings onto others? They need one of those Pet Friends to come so everyone could "ooh" and "ah" over the furry creature and how cute and well behaved he or she happens to be! I am telling you there are just days I want to stand up on a chair and start screaming like an insane woman...HELLO! Is anybody out there? Is this hell's waiting room? Where was the wrong turn we took that lead us to this place full of people who are so busy they don't even see us? Why can't we find our way back?

Nick has been having a lot of trouble with his breathing. The steroid taper was not going well, so Dr. Pants put Nick's dose back up where it was, so now he is back on really high steroids again. What does all this mean? I have no freaking clue right now. And apparently the doctors don't really have one either. I have been trying to look up options for Nick to see other doctors and there is a study at NIH on GVHD we might look into. No miracle cures though. Most days I am tired and sad...I cannot shake these feelings that are pulling down. I cannot figure this one out anymore. I do not understand. I am tired of being patient and I am tired of the whole messed up medical system. I could write a book filled with prescriptions for frustration.

Today we met another young woman who also has lung GVH!! She also must wear oxygen 24/7...she is fighting, staying strong, just like Nick. Her Mom runs for food, wheels her chair, waits patiently...knitting sweaters. I don't want to knit sweaters, I want to bang on the walls and break glass and kick people in the shins and say "Wake the fuck up...fix this! Fix what you have done with your drugs, and your cures, and your theories, and your maybe this might work, and your we don't really knows! It is endless and ruthless in it's onslaught. For Nick I will stay strong and keep on. That is all I know how to do right now. I have no patience for people who won't work as hard as I do to help my son. God damn slackers! So that is all the anger I can spew for now...for those who can't handle it, just keep looking at the cute puppy.