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Whine, whine, whine, whine, whine.

Posted Mar 11 2009 3:58pm

It’s been a hard month.  We started out with Charlie in the hospital and are now dealing with a child who has regressed cognitively and behaviorally.  Things are so bad I cried all the way home from dropping Charlie at school.  His teacher and the teacher from the room next to his had to hold him back as I walked away - he’s back to separation anxiety.

But, I believe we’ve found a big piece of the puzzle that is Charlie.  Thanks to some testing we have discovered that Charlie is intolerant to all 5-ASA drugs (the GI drugs used to maintain what the  immunosuppressant drugs have repaired).  We also found out that Charlie is a rapid metabolizer of 6-MP.  These two pieces of information have allowed Dr. Krigsman to come up with a  new protocol for treating Charlie’s bowel disease.  He says we should “have our Charlie back in one week.”

I’m withholding my joy and excitement (not even sure I possess those emotions anymore) until I see the improvements for myself.  I refuse to get on the roller coaster; instead I am happy to maintain a jaded, middle of the road belief that we will see improvements.  The extreme ups and downs are too much for me at this point.

There used to be a commercial for Lakeside Hospital where this horrifically depressing music played (you know the music of which I speak? the music where if you weren’t depressed before you watched the commercial, you sure as hell were by the end of it!) and these images of this (obviously miserable) woman would flash on the screen.  As you watched the images you would hear a voice-over where the woman talks about her depression and how her life now has, “no taste, no texture, no color.”  That’s exactly how I feel; but minus the depression.

Sometimes I’m talking to a friend or my sister, and they are so excited about something; but, I can’t muster the excitement.  I can’t sift through my emotions file and find the appropriate response.  The most I can do is say, “That’s great” or “Wow.”  That’s it.  To make matters worse I can hardly stand to talk to them if they are having an “up” day because I know I can’t keep up.  But again, I do not feel depressed… just void.   And before you start freaking out on me, I don’t feel suicidal.  I don’t have suicidal thoughts.  I don’t feel the urge to jump off a bridge, or push anyone off for that matter (except Paul Offit… I’d like to drop-kick him off a bridge for sure!).

So back to Charlie.  He’s been slowly slipping away from me.  My mother was just talking about how we had all but recovered Charlie, and then he was gone.  She’s right.  See, that’s the problem with recovery - it’s a slippery slope.  Someone recently said if your child regresses after “recovery” then they weren’t recovered to begin with.  I guess I see the truth in that statement.

But, Dr. Krigsman believes that Charlie will come back to us.  He believes Charlie’s autism is caused by his gut disease(s).  He believes when we heal the gut (completely), we’ll have recovered our child.  I can see why he believes this, as most of Charlie’s “autism” is tied to gut issues.

So off we go… again… on the road to recovery.  But you see, the thing is, I’ve been there, done that and I’m getting real tired of doing it over and over again.  It’s like freaking Ground Hog Day, the movie - I keep reliving this shit over and over, each time improving some aspect of Charlie’s treatment, care, and life.  Yet we haven’t reached the end of the tunnel.  It’s like we’re greyhounds chasing the rabbit around the track.  Will we ever catch the rabbit?  Sure doesn’t feel like it today.  But that’s just my Debbie Downer side talking.  I’m not normally so negative, pardon my pity party please.

And listen to me, whining because this is hard for ME.  Geez.  Can I be any more annoying and selfish?  If it’s any consolation, I annoy myself most days.

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