Friday, July 22, 2011

Blog Name Change

Blog name domain thing expired again.  Sick to death of trying to renew so it is.  It is not redirecting either so I will so find out who really cares to read anything.  No worries,  its mainly for me to keep track of treatments, the when and where's of everything.  I informed the one person I needed to so all is fine.  DUMB!  I mean I tend to think I can find my way around a computer and the internet pretty sufficiently, but this one has me stumped.  Again.  So forget it.  I don't have time.

Infusion Wednesday
Big boy had his infusion.  It went smooth.  Awesome nurse.  On top of it.  Tears with IV start but got it in one poke. Raging,  ticked off, little boy afterwards.  We started our first enbrel shot in the infusion center.  It defeated the purpose of teaching me because the pharmacy already mixed it for me.  I know how to do the injection.  Oh well.  It was good to have a nurse watch me do it as a review.  She commented when we were through, "your pretty much a pro".  Yes, yes I am. *Giggles*

I ran into one of the doctors from rheumatology.  She said "hey!  how are you?  how is he?".  I did not bring up the May med increase and the fact I got busted for it.  I am done and over it now.  Tired of talking about.  Although the last time something like that happened, someone said something I didn't like, it took me a months and months to get over, LOL.  And look, here I am bringing it up.  Only for the sake of an example though.  That is completely possible to not drudge up the past for sake of explaining it.    Anyway,  for the first time in 2 years, I forgot to ask for a copy of his labs.  : 0  Serioulsy.  I am shocked with myself.  An example of how my busy life is starting to effect my mind.  I need to be careful with that.  Gary and his treatment are pretty high up on the list.  Not that it is a big deal but I just really couldn't believe it.  I was to busy watching tv while he slept. LOL  Bad mom.

Gary has been having a little trouble sleeping.  Like the other night when he stood at my bedside screaming for what seemed like hours he hated me.  "I hate you  I hate you I hate you. I am sooooo mad at you right now". Over and over again.  I ask all the tender questions, "why honey?" as sweetly as I can but he doesn't even hear me.  So I stop.  He suddenly will snap and say instantaneously, "I sorry Mom."  And that it that.  He hugs and kisses me and snuggles in bed with me.  Swollen swollen face, all itchy, going crazy.  I know he doesn't hate me,  he hates it.  He hates JDM.  He hates the medicines.  Nothing personal.

Infusion Center Bites Sometimes
I usually don't let it in, but on a subconscious level, it gets in.  One curtain over, a nurse was helping a Dad with some procedure on his baby.  I hated it.  The baby cried and cried.  High pitch, low pitch.  No matter, you hear it a lot in there.  But it went on and on.  Well, what seemed like that.  Suddenly, I was so stressed out.  My insides knotted.  I felt hot.  I felt dizzy.  The room was whirling.  I just wanted to scream, "STOP!!". I wanted them to pick him up, give him a break!  I think they were flushing a port and placing an ng tube or something.  I hated it.  I even cried a little.  The nurse came in to do bp check and asked if I was ok.  I desperately wanted to say no but I knew.  I knew that Gary had been through similar procedures.  I knew that it is sometimes necessary.  Starting and stopping again wouldn't help either.  Just getting it done, then its over with.  But maternally it wreaks havoc on my emotions when it is not even my child.  It's a matter of humanity and wanting to scream STOP  just STOP doing that so that little baby will stop crying.  Pick him up,  love him.  All to which I am sure the parents do and did.  It is probably way more difficult for them but they are also really into what was being learned.  He would need to go home and do that by themselves. So crying or not, it had to be done.  Sucks.

I hope Enbrel works and works well.  It's just getting worse. So many of them.  All over his chest, all in his tummy, around his elbows, in his legs.  Tops of knees a few have come, even another on the top of his shoulder.  Some seem smaller, others big.  Above his hips, but not around his lips.  OK  this is turning into some kind of sick,  twisted, rhyming children's story book.  I am gonna stop.  But you get the picture.  No open wounds though from it, as of yet.  Threats of it but they also seem to simmer down when they get to that point.


  1. Hey sweet girl,
    I am doing a post in a sec about your blog and the domain thing and how it won't redirect and give the new one out and have people come over and say hi. You have an amazing story, an amazing little boy and you are an amzing friend! Yay his infusion went well. I am glad they did the enbrel. I didn't have to mix mine LOL I guess where I am so dingy and older they just give me mine in a pen ha! Im not gonna lie I still made the hubs go buy me the Eclipse band-aids for my pain bahahhaha Im sure gonna need them now with iv once a week geez. OK so don't beat yourself up about forgetting a copy of the lab sheet girl with all on your plate that is so minor...hun I forget bloodwork sometimes which reminds me I did it again and need to go get it done...oops see we have so much going on it's easy to forget! You are the best mommy you really are and I am so proud of you and you make me laugh like no other. Glad you informed me cause I would be like freaked worried if I didn't hear from ya'll!

    love you

  2. Hello,
    I came over from Summer's blog and have joined so I can follow your story. I will be keeping you all in my prayers.
    I can totally relate to hearing a baby cry. Even to this day when I hear a little one cry I just want to go over and pick them up and snuggle them telling them it's ok. Makes my mommy's heart break and bleed.

    I hope Enbrel works for Gary. I have RA and use Enbrel too.

    Praying and praying,

  3. Hi,
    I follow Summer's blog and stopped by to let you know I will pray for your little boy. I Have an 11 year old girl who has battled cancer twice...we are winning and you will too!

    Vickie J.

  4. Hello, I follow Summer's blog but was given little Gary's name for prayer from Child of God. I will certainly be following from now on.
    I completely relate with having your little one crying and being stuck and Doctor visits and loosing your everlasting mind. My daughter, now 17 yrs old (going on 25 ;)) but she was born with an ASD & VSD (a hole in the up and lower chambers of her heart). She had open heart surgery to repair both holes at 7 months old... So in short God is Good all the time! He was with her through all the heartache and the suffering she had endured she is doing great now, still have the occasional cardiology appt.
    I will be praying for and with you for your family, Gary and for your mommy heart to stay strong!!! Hugs and Blessings :)