Simmer, Simmer ...

“Blood draw Monday ... how do I make my heart not drop when the phone rings? Feels like I'm always waiting, like we did in the beginning of our fragile X journey years ago, waiting for a diagnosis, afraid to answer the phone. BTW I don't need my furnace cleaned.” 

That was my Facebook status on this lovely Monday (just using that adjective trying to convince myself it’s going to be a lovely Monday).

Just me and Austin home and I said “Austin, I think I’m going nuts!” and being the wonderful son he is he kindly told me “I think you are nuts”. Yep and I'm just singing along to "The Monster"  http://www.youtube.com/watch?v=EHkozMIXZ8w and I do feel like my OCD is conking me on my head.  

I need to get busy but the ringing of the phone distracted me and brought forward just a little worry, that worry that is always lurking.  Its times like this I almost want to really enter Austin’s world.  When he’s anxious he buries himself in a routine.  I’ve often seen it displayed by pacing and spinning, always a pattern, three steps, a spin (always in the same direction). I can understand how it could be calming for him because he has to focus on the routine, keep it exact, and block everything else out.

Now realistically pacing and spinning will probably only make me dizzy. It’s not very productive, I’d later run the risk of being labeled a dizzy-broad (not by Austin, probably by my hubby) and we can’t have that happen.

I’m going to bury myself in the January newsletter for the Fragile X Association of Michigan (FXAM) group and then when I’m done with that I should move on to the website. The poor website has been neglected over the last month and a half, I need to make a lot of little updates, maybe explore what I could do differently to make it better. Hopefully, this kind of busy work will keep my mind a little more occupied and I can put that worry back where it belongs, on the back burner, on a very low simmer. 

Keeping my fingers crossed the results will be in my inbox shortly and they'll lessen the worry.  

CBC results are in and since the turn-around time was so short I'm just adding to what I previously posted.  Sadly, there is not less worry, hemoglobin count has dropped again, now at 7.9 (was 8.5, normal is between 13 - 17), red blood count has dropped to 2.47.  Let the song go on ... 

Maybe I need a straight jacket, face facts
I am nuts for real, but I'm okay with that
It's nothing, I'm still friends with the 

I'm friends with the monster that's under my bed
Get along with the voices inside of my head
You're trying to save me, stop holding your breath
And you think I'm crazy, yeah, you think I'm crazy

Update 7 p.m.

Well, I just couldn't make the call to the doctor today, 4 o'clock came and went and I just wanted a little more time to have a little less weight on my shoulders. Definitely Ostrich syndrome, just buried my head in the sand.

The doctor did call, a little after six, so the honeymoon is over. 

Wednesday we have an appointment with our surgeon, regular follow-up. Hematology has now scheduled us to meet with them at 11 am (at least I'll be able to make one trip for both appointments).  Hematology will want to do a scan to determine if possibly there is a piece of the spleen left behind. Like enodometiosis somewhere in his body there could be a piece of the spleen that was attached else where and is still acting like a spleen would act.  Now if they find something I'm not sure if that means there will be another surgery, part of the appointment is to discuss the next steps.