Tag Archives: homebound

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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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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It’s Blue Jean Friday

That’s what we like to say around the house.  My husband gets excited about Blue Jean Friday.  Although, if I look a little deeper it’s probably excitement about the impending weekend rather than the fact that he gets to wear his jeans.  In addition, the sun is supposed to show up for Blue Jean Friday. YEAH!

Yesterday was a good day.  Jessie went to school around mid-day, then stayed afterward to play catch-up.  In all, she was there from about 1:30 until 4:45 – a good day indeed.  The best thing is that she didn’t feel the exhaustion afterward.  In fact, she was in her room doing pilates when I went to bed last night.

We’ll see how she fares upon waking, but the plan is to head back into school this morning for a few hours. Next week is spring break and I’m thinking that, if we’re lucky, the following week will get us back to semi-normal/normal.  Maybe the medicine is completely into her system and working properly.  Whew.  It’s been a LONG seven months.  Gosh, I didn’t realize that this bout has actually lasted SEVEN months. I’m talking seven months for just this phase.  She’s actually been sick since 2005.

This whole sickness continues to boggle the mind.  What have we learned from this experience?  Does she have a myriad of illnesses including CFIDS, Celiac, and Orthostatic Intolerance?  Is she pulling out of CFIDS and moving into something else?  Did she ever really have CFIDS?  My answer is, of course she did.  The onset was too textbook.  Even the specialist, who sticks to the diagnosis of clinical CFIDS wonders if the majority of her problems are from Celiac. The symptoms are extremely similar.  The new pediatrician questions whether or NOT she has Celiac.  We will go to an gastroenterologist this month and finally put that question to rest.  The cardiologist believes that CFIDS is an overall name for an underlying illness.  I tend to side a little with him.  I think it’s something that will one day be figured out by a researcher and make complete sense.  While I’m fantasizing, I’ll add that it will have a cure.  Hey it’s my brain and my thought process, I can add anything I want to.  

Once again, my constant questions rear their ugly head.  But isn’t it the questioning that moves us forward?  I like to think so.

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Money and Thunderstorms

We need a little of this in our part of the woods.

I’m still chipper!  I’ll say that first before it looks like I’m whining.

Today is rainy and thundering.  We SO need the rain, but I am quite sick of it.  Gray does absolutely nothing for me.  Also, I had to have, what I now believe is, my jinxed car repaired yesterday to the tune of over $1000!  GRRR.  I tried to look on the bright side and think it’s still cheaper replacing the stupid thing.  

Yesterday, Jes had grand plans of going in to school around mid-day, taking a test, going to class, taking another test after that class, etc.  She went as far as to get a shower, then couldn’t muster the energy, so she stayed home and continued to play catch-up with school work.

Today, we’re hoping for better things.  I think it’s a good sign that, at least, there are positive plans each day.  Things don’t always pan out, but it’s still looking up.  It’ll be an interesting balancing act today trying to pick up my (cursed) auto, go to the dentist, get Jes to school at some point, then pick her up, while trying to run a few errands.

Anyone have a little spare sunshine and color to send this way?

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The Pity Party Is Officially Over

Me - Last Week...

Me - Last Week...

 

The pity party has ended.  Isn’t it amazing how you deal with life’s difficulties pretty darned well  and then some seemingly little thing slams into the side of your head without warning and sends you into a tailspin?  Yep, it’s the basic straw that broke the camel’s back.  Well anyway, it’s over and gone.  Silliness has returned to our household.  Life does, in fact, go on.  Blah blah blah.

The week has started out on a higher note.  Jessie was going to try to go to school yesterday, but things just didn’t work out. Today was better.  Dental appointment at 9:30 (NO CAVITIES after 2+ years of braces!) and then she went to two classes. Yes you heard it right here, two classes in one day.   

It’s a bad sign when you go to your Lit class only to realize that you’ve gone to the right class at the wrong time.  Yep, it happened.  But Jessie laughed it off.  She did report that she was in trouble for talking within the first five minutes of being in Biology (once she found the class.)  Ahh, you can be sick and still manage to irritate your teachers.

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Friday Update and The Grieving Process

It’s been a long week.  Jessie hasn’t been able to attend school any more this week since the one class on Monday.  Sleep has been practically nonexistent.  We added back all of the medication last week and the Charlotte doctor said that we should try increasing the Lyrica if Jessie continues to have trouble sleeping.  So I’m going to give her 50mg tonight instead of her usual 25 mg.  For some reason, I don’t think that will make much difference.

We got the news this week that the school is not going to recommend honors or AP classes next year (11th grade) for Jessie. The reasoning for this, according to administration, is that she can’t get the full impact of the course (lectures, discussions, etc) while working from home.  I was surprised when we got the news and Jessie argued at first, then realized that there is nothing she can do about it.  This may be hard to understand, but hearing those words was like a slap in the face.  First I felt a sense of relief, then confusion, a bit of anger and then more confusion.

Jessie is one of the rare cases of CFIDS that doesn’t have the brain fog or cognitive issues.  In fact, throughout the past three plus years of dealing with this debilitating illness, she has remained on the honor roll, making only a few B’s.  She’s been blessed with a gift of knowledge that absolutely didn’t come from her mother!  Anyway, the news leaves me torn.  I know that Jessie will have less stress next year in regular classes, which is a good thing.  I’ve never been academically tough on my daughter.  In fact, her dad and I have both encouraged her to take fewer advanced classes lately to relieve stress.  However, I know my daughter.  Jessie’s bar for herself has been set incredibly high regarding her classes and her grades.  She always insists on taking rigorous classes and strives to make only A’s. 

Since Jessie’s had this illness, she’s been robbed of her teen years.  She can no longer participate in sports.  When she’s sick and even many times when she’s not, she isn’t up to participating in extra-curricular activities because energy has to be carefully measured.  Also, when she’s sick, she doesn’t feel up to seeing friends.  This past year we had to move to another state and Jessie was taken away from her support system, her friends.  Because she was only in school for two months, she didn’t have the chance to create the friendship she desperately needs.  This move was very difficult for her.  

So, basically the only thing that Jessie absolutely KNOWS that she has is her exceptional ability to learn.  Now because of this stupid disease, she will have to attend classes that she will literally float through.  Jessie wants to work in medicine, possibly becoming a doctor.  She jokes that she’s had so much experience recently with doctors that she may as well become one.  

Don’t get me wrong, I am at the opposite end of the spectrum when it comes to pushy “helicopter” parents.  I’ve been more in favor of quiet time than over-booked days.  Before this illness, activities and sports were limited.  Now however, I don’t know what’s right for her.  Under normal circumstances, this girl is fully capable of taking dual-credit high school courses in the 11th grade.  She has aced honor courses for the past 3 years while attending less than half of the actual classes.  Is it right to make her take a lower level class, beneath her true ability?  Will this yank out the one thing she has now that gives her pride?  

On the other hand, we know that we’re not talking about normal circumstances.  Will taking the regular classes give our daughter time to breathe and maybe a little more energy to attend a few football games and dances?  Is this part of the grieving process I’ve read about for parents of chronically ill children?  Is this a parent’s guilt after uprooting a teen and making her move to another state, away from her friends?  Most importantly, where is a good psychiatrist when you need one?

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Friday! Friday! Friday!

Yippee.  Fridays are always good.  Except this weekend it’s supposed to rain all day on Saturday and both Jeff and Wes are helping out at a biking competition.  Sounds like fun, huh?

I’m making this quick because I have to be somewhere early this morning.  The entire week was more or less a bust.  Jessie kept claiming that she was feeling a touch better as the week went on, but I’m not seeing it.  She REALLY doesn’t want to pile all of the meds on again.  I am sure that she needs the Pamelor, or at least something similar.  She did not make it into school at all this week and will HAVE to drag herself in today for at least two hours.  If not, we have to turn back to full time homebound.  I think I may call the cardiologist today to ask what we should do.  I thought our appointment was next week but it’s actually the NEXT week and I really don’t want to see Jessie in this kind of shape again next week.  

Well, I think that’s it.  I have to add that this past week, Jessie made gluten-free shortcakes for strawberry shortcake and it was fabulous.  I liked it better than angel food cake or the yucky pre-packaged shortcakes.  I’ve failed miserably posting products and recipes.  Maybe I’ll make up for it this rainy weekend.

Have a wonderful weekend.

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