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.



Filed under Daily Chronicle

4 responses to “I’m Not Being Punished At All!

  1. Sometimes it’s hard to get everyone on the same page. It will happen. If it’s what you want, then do what you have to do to make it happen. Have a nice rest of the weekend!

  2. Living Chronically

    Thanks Kathy. I know, this too shall pass. We’ll work it out some way.

  3. Sue

    I can totally relate!! We went though some really awful battles with schools over the years. At Craig’s elementary school, when we were trying to get him a 504 plan, our doctor sent in the required note, and the school nurse refused to believe it! She actually called our pediatrician and spent 45 minutes telling her that her diagnosis was wrong! Can you believe it? Fortunately, our doc immediately called me, and I let the principal know what was going on. The nurse wasn’t included in any more 504 meetings for Craig!

    But, I’m not sure why you need a note from your PCP, who doesn’t seem to understand CFS anyway. Why not just get the note from the cardiologist? Most of Jessie’s most debilitating symptoms come from NMH/OI anyway – the fact that CFS is causing the NMH doesn’t really matter. I’d just focus on the cardiac/OI issues for the school – it’s easier for them to understand anyway. Will that work? Good luck – I know how frustrating this school stuff can be!


    • Living Chronically

      Sue, I’ve thought of that with the cardiologist. I’m hoping that if Jessie wakes up this morning and feels better, she can try to go in to school. If she is continuing to feel better, then we can just keep the status quo with intermittent homebound status, which of course is great news anyway. If she can’t do it, then I am calling the cardiologist. The heck with this PCP. I’m finding another one.

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