Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

Get a playlist! Standalone player Get Ringtones

Thursday, May 20, 2010

From Tuesday Evening

Ugh, thank goodness this day is finally over.
 Nothing about today made it especially bad. There wasn't one big event. It's just the culmination of a lot of events all at once. 
And I'm tired. Even after a 3 hour nap I'm still tired. 
So today sucked for no special reason, but I think I've indetified the tipping point, the trigger that put me in the foul mood. 
It wasn't x fighting to get out of school, whining and throwing every excuse in the book, it wasn't grocery shopping, which I hate because it's dirty and absolutely exhausting. It's a reminder of how disabled I am. 
I dred the grocery store, but not as much as the pharmacy. I went there today too. 
No the tipping point was x's IEP meeting. Since x has a diagnosed speech and language delay I go in for yearly meetings to revise his goals based on his needs and accomplishments.
 It used to be an easy meeting. 
X would get speech therapy. 
I would make sure he was healthy and would keep hearing. After three sets of tubes and the removal of his adenoids and tonsils, he still got an ear infx a couple weeks ago. The muscle in his ear is supposed to mature so he's not so susceptible to infx by 8 yrs old. Today he was complaining his ear hurt. I guess he will be 8 when his hearing issues go away. His speech is improving. 
He can make correct sounds, except "Rs," and barbara walters has had a long successful career without using those. 
But now there are many additions to what was once a single goal. 
Yes, now he's identified as "at risk" in reading. He has delays which may require occupational therapy. He has issues with spacial reasoning. His constant movement, which everybody on the team has recognized, was brought up, giving a bit of a shock to me. I knew he was fidgety. I know he"s always moving. He is down right exhausting, but I thought it was in the realm of normal. ADD/ADHD crossed my mind and hasn't left. That's just another issue/diagnosis/problem to deal with alongside his also yet to be diagnosed dyslexia. He also has social impairments from his anxiety and depression. 
I'm tired, so tired. Todays meeting only reminded me of everything I have to cope with above and beyond my health issues. 
I'm cranky and now looking at x differently, like he's suddenly broken.
 Nothing has changed except suddenly I realize that he is probably dyslexic with add/adhd, like me, and there is very little I can do about it. Right now I don't have the energy to form a plan of attack. 
Good thing I have a whole team of people in the school who did that for me. The school has been wonderful. 
His reading has improved significantly since Jan. When he ranked in the 14th percentile. He is now in the 51 after a couple months of daily 30 min, one on one sessions. 
If only he keeps making leaps and bounds like this, I think we'll be okay, just not today. I'm going to bed. Tomorrow, I'll start fresh.

No comments: