Tag Archives: Florinef

I’m So Ashamed

WooHoo for warmer weather!
WooHoo for warmer weather!
And picnics with friends...
And picnics with friends…

And roasted marshmallows!

And roasted marshmallows!

Before talking about the wonderful springtime weather, allow me to confess.  I glutened my daughter.  No, I didn’t do it on purpose and it doesn’t make much sense, but the fact remains that Jessie was glutened by her own mother.  

One night this past week we had pork chops and rice for dinner.  The next day Jessie told me that she had cramped really badly that night.  No other symptoms, but she knew that it was the same cramping she’d experienced before.  We mentally went through the entire recipe and there was nothing.  The only difference was that I’d just purchased Kroger brand basmati rice which was different that the brand I had been using.  Sue me.  I tried to save a few bucks.  

Fast forward to last night.  We had chinese.  (This is no joke.  I am a fabulous cook of chinese cuisine.  Jeff is beginning to call me Lori-son while doing his best oriental imitation.)  I said that we were going to have the rice, so if Jessie had cramps again, we’d know that it was the rice.  Sure enough, it was worse for her last night (sparing gory details here), but thank goodness by morning it had passed and she felt better.  The only thing I can figure is that the rice is processed in a plant that also processes wheat products and it was cross contaminated.  Golly, I’m sticking with the expensive rice from here on out.  Even when you think you’re safe, you just never know about those sneaky gluten attacks.  

It’s Sunday now and Jessie told me that, overall, the headaches have been pretty bad this week.  This morning she is feeling better with no tiredness, achy muscles or joints OR headaches.  It’s been five days now since she stopped taking the other two prescription medicines that she’s taken for over three years.  Every morning I wake up wondering if she will have a major crash.  Well duh, that was a stupid remark.  It’s really no different from any other morning in the past three years.

Now for the cheerful springtime talk.  It’s been beautiful here this weekend with temperatures in the mid 70s.  Jeff and I stopped off after church at Wally-World to pick up tennis balls (one canister for us and another for our dog, Sophie) and he’s taking Jessie down to the tennis court this afternoon to send a few of those new tennis balls over the fence.  My irritatingly worrisome self needs to remember to tell Jeff not to let Jessie overdo it. 

Have a good week!

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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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Trying Something (Else) New

Today, the cardiologist decided to increase Jessie’s Florinef from  once to twice a day.  This is what I was hoping for.  He also seemed to really take an interest in cracking the puzzle of her illness.  This is something I’m ALWAYS hoping for.  

The doctor said that instead of just throwing more medicine at Jessie, why don’t we increase the Florinef while at the same time cut out the other medication she has been taking.  Hmm…I kind of like this idea.  I already felt strongly that her medication needed major tweaking and, let’s face it, she’s already unable to attend school.  We all agreed to do this experiment.  So here we go, trying something entirely new.  

They did another EKG and everything looked good.  Jessie got a little freaked when she asked the assistant if she would have to wear the heart monitor overnight again.  The assistants reply was, no, but there was a possibility that the doctor may want her to wear a 30-day heart monitor.  OH MY GOSH.  It was one of those “speak and jump WAY back” moments that this poor little assistant didn’t know anything about.  I thought Jessie was going to take her out right then and there.  Luckily, she wasn’t required to wear the 30-day thingy, the assistant survived the strange encounter and all was well.  

At any rate, whether good or bad, we should have an interesting week ahead looking for symptoms, side effects, spontaneous growing of additional limbs, mustaches, etc.  We’ll keep you posted.

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Catching Up

 

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I haven’t written much on Jessie’s condition since Monday morning because there’s really not much to write.  She hasn’t done as well for the past couple of days as she did over the weekend.  Yesterday she was extremely pale again with a few of the spotty stabbing headaches.  

The headache could be from lying in her bed reading, get this, “The Professor and the Madman: A Tale of Murder, Insanity, and the Making of the Oxford English Dictionary”.  Sounds like a page-turner, doesn’t it?  Some of the things that they make you read in high school really could cause excruciating stabbing migraines.  Don’t you think?

I’ve said this a thousand times already, but we head back to the cardiologist today.  I don’t know why I get so excited when we go to the doctor.  I guess that, as a mother, I continue to believe that each visit will bring SOMETHING that will bring us a cure.  Not a very realistic thing to hold on to.  But, alas, I am a mother.  That is what we do best, realistic or not.

As an aside, I just received my morning text message.  It’s from a 15 year old girl (friend of Jessie’s) in Virginia who has developed quite the following.  She sends a bible verse every day and has done it faithfully for about two years.  Anyway, as I write this post, I receive mine.  Here it is:

“Faith is being sure of what we hope for and certain of what we do not see.”  Hebrews 11:1

Timely, don’t you think?

Have a wonderful day.

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March Already?

I cannot believe that today is March 2!  Time is flying and I am really getting old!  March did not usher in the warmth of spring.  It came in roaring like a lion with icy rain, snow and wind.  

Having said that, it was not a bad weekend!  Wes’ friend, Hunter, was in and the boys had a blast together.

We’ve begun to call Jessie “Cheeky” because of her rosy cheeks.  Last night we discussed this at the dinner table and she said that she does feel a little better.  My husband noted that we haven’t seen the herbal headache pack pulled out of the freezer, she isn’t walking around holding her head, and she is more pleasant to be around in general!  This is a good thing and we hope it continues.  

I got a call from the doctor in Charlotte on Friday afternoon advising that the Florinef should help with her headaches as well as other symptoms if it does it’s job properly.  We will go to the cardiologist on Wednesday for a followup.  I’m hoping he sees progress and increases it a bit.  One more increase could get her where she needs to be.

Have a great day.

**Nice quote to ponder:  “We cannot all do great things, but we CAN do small things with great love.” – Mother Teresa

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Maybe a Little Better

Jessie’s goal yesterday was to make it to 1:15 so that she could take the freaking heart monitor off.  She actually wore a belt to bed the previous night so that the little box attachment would remain on her body.  Needless to say, it drove her crazy. 

Jessie did take a dose of the Florinef on Wednesday and then again yesterday morning.  I don’t know if it’s my wishful thinking, if it’s too early or what, but she reported that her energy level was a little better.  It seemed to me that she didn’t sit or lie down for any extended periods yesterday, which is unusual.  Maybe the medicine is working a little already. Or maybe it was just a good day.  Oh well, anxious parent here.  I guess time will tell.  They did give her the smallest dose.  

Jessie told me that a friend will be coming by today at some point to drop off a couple of DVDs.  I asked her if she wanted the friend to stay and watch the movie with her and she just scrunched her face and said she really didn’t feel like it.  This is a pretty good friend, so I know she’s still not feeling too much better.  Jessie actively participates in texting and Facebooking (is that a word?), but when she’s not feeling well, she just doesn’t want visitors.  I guess I’d be the same way.

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