Daily Archives: March 7, 2009

I’m Not Being Punished At All!

Wes sat with Jessie late into the night on Thursday, trying to make her feel better.  I think they made some progress.  He told me on Friday morning before he left that she laughed when he began to throw chocolate chips at her head.  Hmm…never will I figure out their strange sibling bond/love/hate relationship.  At any rate, he made sure that he left long before she got up on Friday and although she wasn’t happy that we refused to let her go, she understood.  

Jessie didn’t sleep well at all last night and is tired and achy.  She was taking the new medicine twice daily but I was advised that it may cause sleep problems, so she’s going to take it all in the morning from here on out.  It’s either from timing, strictly coincidence, or because she stopped taking one of the other meds.  Maybe she’ll sleep better tonight.  I noticed also today that her feet were swollen.  This could also be a side effect of the Florinef.  Luckily it didn’t last too long.  I took her to the library this afternoon and she’s got a new book to read.  As I write, she is on the front porch reading with the dog by her side. 

Bad news with the doctor and the homebound issue.  I swear, it’s always something, isn’t it?  The doctor has had the letter and labs from the North Carolina doctor for about 1.5 weeks now and I keep calling, the school has called.  Anyway, the nurse called me yesterday at about 4:45 to say that the doctor was still not convinced and she wants to see us in her office.  AGHH.  This relationship is NOT working out.  The last time we saw this doctor in November when Jessie was battling the migraines, she told me that I coddled Jessie too much and that I needed to force her to go to school.  The cardiologist we’ve been working with told us that he knows of a really good PCP and that he would write a letter to her so that they could work together.  I’ll be calling her office on Monday to schedule an appointment.  That won’t help us in this situation though since we haven’t even seen anybody else yet.  Do we ever miss our doctor in Virginia.    

I had joked that by the time we get the stupid letter signed for homebound, Jessie would probably be feeling better.  That may just be the case!  Wouldn’t it be a good thing?  I told Jessie that we should first see how she does through this weekend and if she feels okay on Monday, then she should just make another go of attending school at least on a part time basis and forget working with this doctor.  After all, she has 2.5 months left for the year.  Maybe we can somehow eek it out.  If she goes and has a real problem such as dizziness, relapse, etc., I’ll see if I can work with the cardiologist until we establish a relationship with the new PCP.

Boy, I didn’t mean to go on about that, but it is a pretty major sticking point for us at the moment.

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What IS Normal Anyway?

 

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Since Jessie has recently been diagnosed with Neurally Mediated Hypotension (meaning that your brain is giving your heart the wrong signal) with the end result being Orthostatic Intolerence (meaning you get dizzy a lot), dizziness has been one of the “questions of the day” in our household.  

A funny thing happened the other day.  Jessie comes into the kitchen.  I ask, “How are you feeling?  Any dizziness?.” Her reply is, “You know, I just thought everybody saw black flashes and spotty lights from time to time.  I thought it was a normal thing.”  
I ask, “Do you mean EVERYBODY or people with Chronic Fatigue?”
Jessie says, “Everybody!”

We had our laugh when I told her that, no, it is NOT normal to see stars and black flashes on a daily basis.  Heck, it’s not even normal to have it occur on an occasional basis!  Apparently the girl has been living with this condition for, well I don’t even know how long!  She just grew up thinking that it was a normal thing for everyone.  I know, this doesn’t make our family look very bright.

That got me to thinking about  what NORMAL really is.  Of course, “normal” is a relative term.  I think I remember hearing that people who have been born blind are more often than not completely content with their condition because it is “normal” – something they’ve always lived with.  If a child is abused and never knows the difference, they think that this abusive behavior is “normal”.   The list goes on and on.  

It just amazed me that a 16 year old would think that seeing stars is NORMAL!  How can this be?  What else does this child think is NORMAL?  Think about it, this could only be the tip of the iceberg.
You know, it’s crazy thoughts like these that keep parents awake at night. 

Have you ever found that what you thought was normal really wasn’t so normal after all?  Just a thought.

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