Monthly Archives: May 2009

In Jessie’s Words

Jessie is working like a fiend.  I stand close by, driving her nuts and saying, “Is there anything I can do?”  As if…  

We are currently down to two weeks of school remaining.  

Brief example of typical day (In Jessie’s words):  

Wake up, eat breakfast and begin to study.  Work on papers and projects due.  Mom is standing by me, driving me CRAZY!  Break to prepare my lunch.  Stop to text. Refuse mom’s offer to prepare my lunch.  I’d end up with steamed broccoli and salad.  I take lunch to computer and resume work.  Stop to text. Head into school to take two make-up tests.  Mom picks me up.  Text while mom is talking about something. Come home.  Study.  Hold on…friend keeps texting me.  Email biology project to teacher.  Done with daily requirements.  Break to text.  Wait.  Receive email that the english paper was due today.  It is 4:00 and teacher tells me that IF I email it to her by midnight, she’ll only take off 10 points.  YIKES.  Text this to a friend.  Mom asks me about something else.  What?  Would I like a smoothie???  Is she crazy?  I don’t have time for a smoothie.  Text friend to complain.  Finally finish paper and email it to teacher. Stop to text.  Parents are forcing me to actually sit down at the table and have dinner with them. Are they crazy?  I don’t have time for chit-chat.  (They don’t know that I text under the table!) Okay, chit-chat was not so bad.  I got to laugh at my brother, mother and dad.  They’re such idiots.  Okay, back to the computer, but before that, I need to text.  Work on drama project that’s due on Monday.  I’m feeling encouraged.  Stop to text friend before I go to bed.

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Sleep Study Results & Update

I have been a slacker now for almost a month!  Posts have been few and far between, which is a no-no in blogland.  This is the busy season for any chronically ill teenager trying to play catch-up and finish the school year.  For the parent of a chronically ill child, the road is hot between the school and doctor’s appointments.  Jessie is plugging away with Hamlet, Algebra 2, Biology, Drama, Spanish 2 and US History with her usual insistence that everything will be fine.  (Shouldn’t this scenario be the other way around?)

We had an appointment yesterday for results from the sleep study.  Jessie had an end-of-grade test, so I went alone.  Long story short, she woke up 18 times during the night of her study and never was able to fall into a deep sleep (REM).  We needed a doctor to tell us this?  Jessie is also a mild snorer.  (Good thing she doesn’t bother reading this blog.  She’d kill me for writing that.) She didn’t have any other issues like restless legs or apnea.  The doctor wrote her a prescription for Flonase to clear her up a bit at night to see if that helps.  If not, we will try a little higher dose of Melatonin.  If THAT doesn’t help, they will just have to give her something else to help with the sleep.  I don’t know why, that all of a sudden in October, the Pamelor just quit doing it’s job.  

Other than that, things are quiet around here.  No more doctor’s appointments for the week.  I have cleared the schedule through the end of the month allowing for “the crunch.”   We were supposed to get the labs done for gluten testing, but we’re holding that off as well.  Jes is still happily consuming all things gluten without any stomach problems.

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Busy Week

I’ve lost track of the days and am too lazy to figure out when Jessie began eating gluten.  At any rate, she has yet to see a reaction, which is wonderful.  I think we have the lab work done next week.  If it’s negative for Celiac, then they are probably going to do another endoscopy to make sure everything is okay.  You can get false negatives with the blood work and the final result will be when they have a peek at her intestine to see if there is any damage.

I am HOPING that the sleep pattern gets a little better and holds out until the end of May because the school crunch as begun. Jessie felt pretty bad yesterday, but went to school in the afternoon to take two tests.  It will be like that every day from here on out. Great way to work on that stress level, huh?

Today I (we) have Jessie’s 504 meeting at school which should be interesting since she’s had such a bad semester.  I still haven’t dealt with the recommendation of regular-level classes for the fall.  I was always under the impression that the teachers make their recommendations, but the parents can overrule.  It’s been told to me that they need to see Jessie in school full-time in the fall to allow her into the honors classes. (mostly “A’s” a a couple of “B’s”.  nothing ever lower, even on homebound) According to my research, we’re getting dangerously close to discrimination and I don’t want to have to result to threats.  I would be okay going along with their suggestions, except for the fact that classes are many times full at the beginning of a semester, meaning she wouldn’t be able to get in.  Today’s 504 meeting won’t cover that topic.  It will cover any accommodations that will be needed for school. 

My car goes to the shop this morning and I’ll drive a rental for a couple of weeks.  It’s a relief because I’m beginning to hear strange noises when I drive.

I may be taking a “roadtrip” with Jeff on Wednesday and Thursday, but I’m still on the fence.  He has a meeting in Charlotte Wednesday afternoon, then will head to Roanoke, VA for the night with meetings on Thursday.  Then he’ll drive back to Georgia (7 hours) on Thursday afternoon, putting us back at around 9:00.  The kids are urging me to go.  I have to admit, it would be nice to see my buddies in Roanoke for a few hours on Thursday.  Plus the location of his meeting in Charlotte is across the street from a great mall.  I think I could “suffer” through a few forced hours in Southpark!  Finally, he’ll be staying at Hotel Roanoke, which is a neat hotel in downtown Roanoke.  Hmm.  My only concern is the kids.  Jessie has to stay on track, which she assures me she’ll do.  I can picture them now eating candy bars, popcorn and soda for dinner on Wednesday night.  Sheesh.  It’s tempting, all the same. 

Have a good day.

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No Rhyme Or Reason

One of the most frustrating things about having CFIDS is that, as hard as you try, sometimes there is absolutely no pattern to good or bad days.  A relapse can come from nowhere for no apparent reason.  I guess that’s what has happened this week with Jessie.

Jessie has experienced insomnia now for several weeks.  In addition, she has also had to deal with a two – three day headache as well as the general flu-like symptoms.  Attending school simply did not happen this week. 

I will admit that I’m cheating and wavering on my previous decision to try something new.  She started on the Wellbutrin SR on Wednesday and immediately felt jittery like she was on steroids, plus the insomnia got worse.  I read up on it and know that this can be a side effect that may or may not ease once her body is used to the medication.  This could take days or weeks.  Jessie was only on Wellbutrin for two days and off of her Pamelor for the same amount of time.  I decided this morning to put her back on the Pamelor and just give her the entire dose at night rather than splitting it as we’d done before.  (We’ve done this in the past and I know it’s okay.  Otherwise, I wouldn’t dare do something like that without checking with the doctor first.) I’m hoping that taking the full dose of Pamelor at night will help her with sleep.

My reasoning is that, as stupid as this may sound, school has got to be finished within the month and the thought of playing with medication right now doesn’t make sense.  The sad fact is that a solution to the problem of insomnia simply isn’t instantaneous. Getting caught up with school assignments would be difficult at this point even if Jessie was a completely healthy teenager. I don’t want her to have to deal with side effects of new medications at this time of year.    I am going to call the doctor and tell them what I’ve done, then deal with that as it comes.  If they have a better suggestion, I’m open.  Let’s hope we make it through the next four weeks!

Have a good weekend.

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