Tag Archives: medication

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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A Reason To Celebrate

 

A sad photo...but SOOO good!

A sad photo...but SOOO good!

 

No, Jessie isn’t magically better.  She’s still plugging along.  I guess the first night was a fluke and it’s taking a bit to get the medicine back into her system.  I think she’s improving at a snail’s pace.  Still no school, but I’m hopeful that today she’ll wake up a bit more refreshed and can go in for a couple of classes.

Last night my husband got some really good news with his job and I’m not allowed to give specifics.  But suffice it to say that we made Jessie go out for a celebratory dinner last night.  We went to Outback and at the end of the meal, Jessie begged me to share a Chocolate Thunder From Down Under.  I was so full from my dinner that I couldn’t.  We let her order it anyway because it’s one of the only places we know of that offers a gluten-free dessert.  Even if you can gobble gluten happily, you haven’t lived until you’ve tried this dessert.  It’s to die for.  

In the end, keeping the tradition and philosophy for all women around the world, I ate chocolate, and ate, and ate.  Jessie and I attacked that dessert like nothing I’ve ever seen. The guys were talking and a few minutes after we’d received the dessert, they happened to glance in our direction.  Their mouths fell open and they died laughing.  The plate was completed clean and we looked like two fat cats who’d just eaten the prized canary!  

After dinner, we came straight home, put on our jammies (not the guys – that would just be wrong), piled onto the sofa and all four of us watched American Idol.  Go Megan, aka – Twirly Girl.

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Hello Sleep

I made the executive decision yesterday to put Jessie back on the Pamelor.  After another sleepless night and the knowledge that I will be lucky if I can talk to a doctor by Tuesday, I called the pharmacist to get advise.  He said, go ahead and put her on the full dose. YAY!  She wasn’t happy about it, but I told her at least this pill is small!  (And we are talking about a SMART teenager here.  The logic is just out the window.)  Anyway, she got two doses yesterday and I gave her a little melatonin last night as falling asleep is the problem.  I asked how long it will be before we see the effect of the pills and dear pharmacist advised that two or three days should do it; she may even see some effect after a couple of doses.  YAY again.  

This weekend has been rainy.  I have been as lazy as a slug, maybe worse.  I’ve been cleaning out my magazine collection (wink wink) and doing laundry.  Yep, quite slug-like.  I didn’t even have it in me to feel guilty when the guys came in from this duathlon.  Jeff has a terrible cold and he had to park cars, then marshall somewhere on the course in the pouring rain. Wes had to ride the sloppy, muddy course before the race began to make sure everything was still in place. (I will add here that this is actually fun to a 19 year old.)

Jessie had a new book to read this weekend, so I didn’t see her very much.  Looks like today will be more of the same.  First day is fun, after that it gets old.  

Sorry.  In all of my sluggishness, I should have come up with a wonderfully interesting blog post for today.  Alas, when the body is a slug, so is the mind.  My thought for the day.

Have a nice, quiet Sunday.

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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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Where Are We In This Game?

Yesterday was another bad day, but not quite as bad as the day before.  I know, depressing start.  Anyway, Jessie woke up again after having a terrible night.  She got up, ate breakfast and I sent her back to my bed.  She then slept until around 12:30.  I think that was the difference in making the day a little better for her.  

Her goal was to get to school in the afternoon, but then the her shower zapped what energy she had. As a result, Jessie worked from home the rest of the day.  As the day went on she did begin to feel a little better.  I took this as a good sign?  I add the question mark because we’ve been here so many times.  You just feel as if you go round and round with the cycle of symptoms so much that, at a certain point, you are totally confused.  Maybe writing this down will help me; at least I’ll have a log to refer back to!  

Right now the major symptoms are insomnia, really bad joint and muscle aches interspersed with headaches.  I now wonder if this is something that is nonstop without medication?  Does it follow a cycle of remission and relapse without medicine?  Does the medicine just lessen the occurrence of relapses and give you the ability to live a more normal life?  

This is interesting to me because, after 3+ years of dealing with this illness, I was curious (along with all of Jessie’s doctors) to see if she was indeed getting better and that this disease had worked it’s way through her system or if the disease was still as strong as it was in it’s earlier stages and would resurface with the absence of medication.  My thinking is that, unfortunately, it’s still strong.  I think Jessie is still holding out with the hope that the pain she’s dealing with right now comes from her body’s withdrawal from the medication.  (When I say medication, I am referring to Pamelor, which helps control insomnia, headaches and muscle pain as well as  Lyrica, a pain medication.  She is also doing without all of the supplements for the time being and is only taking the Florinef, which helps the hypotension.)  

Oddly enough, the color that we noticed in her cheeks in the earlier stages of taking Florinef has disappeared.  It’s clear that I am totally confused and have more questions than answers.  Again, I apologize for talking in circles.  

I guess we’ll hold out until next week.  I think we go back to the cardiologist on Monday or Tuesday and then we will have a follow-up telephone appointment with her doctor from North Carolina.  What I’d REALLY like is for both doctors to consult one another on the phone to decide on a plan of action.  Is that too much to ask?  I think not!

It’s Thursday morning.  The rain hasn’t come yet.  I’m feeling strangely hopeful today.  Let’s put on our happy face and convince the world that, indeed, TODAY will be a good day!

“Once you choose hope, anything’s possible.” – Christopher Reeve

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Sluggish and Achy

Yesterday was not that great.  Jessie ended up working with the tutor at home in the afternoon taking only one test instead of the two that were planned.  Afterwards we walked to the tennis courts for about 15 minutes.  In the end, I went back to the house and got the car to come pick up Jessie.  She started feeling weak and had the flashy lights feel.  

This morning she reported that she slept terribly.  She said that it felt like she slept on a board all night.  Jessie is achy and tired today.  However, she needs to try to make it into school today for at least one class.  

Seems to me that she’s beginning to see what happens if she goes off of the original medication.  I don’t think either of us regret this action at all.  It will be good to see where she stands and what needs to be done.

We’ll see how it goes.

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It’s Friday!

We’re about to begin our third day of taking only Florinef.  I’m sure that any regrets we may have for ditching the old meds will hit us sometime this weekend.  Hopefully there will be no regrets, only happiness.  Remember, we doubled the Florinef on Wednesday and did away with her other medication.  

Jessie was lying on her bed reading for hours yesterday trying to finish a book for her english class.  She got dizzy twice when she got up (dizzy meaning dizzy with black and light flashes).  She said it passed and surmised that it was because she’d been lying down for so long in one spot.  Considering that she had one of those “study all day” days and got through it without a killer headache, I take it as a good sign.  It will be interesting to see how she slept last night.  I’ll be holding my breath throughout the upcoming week, waiting for the ball to drop – and I thought I was a “glass is half-full” kind of person.  (Truly I am; this is just a fluke)

Wes is going up to North Carolina this weekend to deliver Jeff’s old dirt bike to the guy who bought it.  He will be staying with friends.  Another sign that she’s feeling a bit better is that Jessie literally pitched a fit last night because she wanted to go so badly.  Normally she would not be up for a road trip.  Of course, we had to say no because she’s been sick and we just changed her medication drastically.  I hate pulling the “mean parent” routine.  It’s gotta be done from time to time, but it really sucks.  First of all nothing would make me happier than to make my kids happy.  Second, nothing would please me more than to send both of my kids AWAY for a weekend.  “Mean parent” surfaced, so I’m sure to be given the “treatment” all weekend long.  Fun Fun

Jeff had to fly to Chicago for what will probably be a one-hour meeting today.  He’ll be back tonight.  Usually a conference call is all it takes, but every once in awhile he has to make a ridiculous trek for a one-hour meeting.  I sent him with a book I’d just started, “Three Cups of Tea”.  I think he’ll like it.  

Okay let the day begin.  Here’s wishing you a wonderful, peaceful Friday.

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