Tag Archives: chronic fatigue

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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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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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.

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What IS Normal Anyway?

 

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Since Jessie has recently been diagnosed with Neurally Mediated Hypotension (meaning that your brain is giving your heart the wrong signal) with the end result being Orthostatic Intolerence (meaning you get dizzy a lot), dizziness has been one of the “questions of the day” in our household.  

A funny thing happened the other day.  Jessie comes into the kitchen.  I ask, “How are you feeling?  Any dizziness?.” Her reply is, “You know, I just thought everybody saw black flashes and spotty lights from time to time.  I thought it was a normal thing.”  
I ask, “Do you mean EVERYBODY or people with Chronic Fatigue?”
Jessie says, “Everybody!”

We had our laugh when I told her that, no, it is NOT normal to see stars and black flashes on a daily basis.  Heck, it’s not even normal to have it occur on an occasional basis!  Apparently the girl has been living with this condition for, well I don’t even know how long!  She just grew up thinking that it was a normal thing for everyone.  I know, this doesn’t make our family look very bright.

That got me to thinking about  what NORMAL really is.  Of course, “normal” is a relative term.  I think I remember hearing that people who have been born blind are more often than not completely content with their condition because it is “normal” – something they’ve always lived with.  If a child is abused and never knows the difference, they think that this abusive behavior is “normal”.   The list goes on and on.  

It just amazed me that a 16 year old would think that seeing stars is NORMAL!  How can this be?  What else does this child think is NORMAL?  Think about it, this could only be the tip of the iceberg.
You know, it’s crazy thoughts like these that keep parents awake at night. 

Have you ever found that what you thought was normal really wasn’t so normal after all?  Just a thought.

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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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Waiting

Yesterday began on a good note.  Jessie did get her braces off and her little (expensive) teeth are just beautiful.  Then, I hate to say it, but the day kind of went south from there.  

First of all, on the way back from the dermatologist, Jessie said her head was getting worse.  

Without going into too much detail, upon returning home, I had to get on the phone with Fed Ex over a delivery “mishap” on their part that is completely unbelieveable.  Let’s just say that there is an expensive bike part which has now made it across the country five, yes five, times – completely due to errors on their part.  They apologize profusely, then say there’s nothing that they can do but try to grab the box off the truck at the next stop which is in 5 business days.  This, I can assure you from past experience, will NOT happen.  Sheesh.

Next, I hear from the school that they have not received the form from Jessie’s doctor here in Georgia concerning her homebound status.  I call the doctors office, actually speak to the nurse and she reports that the doctor (note: this is a new doctor as we just moved to Georgia) received the letter from the other doctor in North Carolina stating that Jessie has been diagnosed with Neurally Mediated Hypotension as the result of a positive tilt table test and Clinical Chronic Fatigue Syndrome.  Our Georgia doctor told us that from that letter, she has insufficient proof of the diagnosis.  What led the NC doctor to diagnosis her with CFS?  I responded that Jessica was diagnosed over three years ago in Virginia and that she has the record in her file of a positive diagnosis from her Virginia doctor as well as a second confirmation from a rheumatologist at Duke University.  Nope, sorry, not good enough.  

So, I call the doctor in North Carolina.  Proceed to fax a release for Jessie’s blood tests, etc.  Then I cross my fingers, pray, and throw salt over my shoulders that the proof which will be sent to our fabulous Georgia doctor will be sufficient so that the homebound form will be signed and faxed to the school.

If she doesn’t approve the status we have two choices.  Jessie would have to return to school, which we know really isn’t possible at the present moment.  Or her dad and I will have to pull her out, which isn’t that big of a deal except for the fact that I will have to figure out a way for her to get the other semester’s credit through a correspondence school. 

In Virginia we had a fabulous doctor and a terrible school.  In Georgia we have a fabulous school and a terrible doctor.  Does God just want to keep things interesting or what?

NOW I can have lunch.

*On a happy note, I was able to hide away in my studio later and finish a necklace that I was working on. Meditation in any form; it’s a good thing.

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It’s a bad day today

Jessie reported that she slept badly last night and woke up with a terrible headache.  She has that look that leaves no question in my mind.  The tough part is that she’s scheduled to take a biology test with the tutor this afternoon.  Right now, I don’t see it happening unless the headache lets up a bit.  

I added something new to the slowly growing recipe list this morning.  It’s called Bucatini All’Amatriciana with Spicy Mozzarella and Meatballs.  Translation = Spaghetti and Meatballs.  Once again, I got it from Giada on Food Network.com and adapted it as a gluten-free menu.  It was very good and not at all difficult.  At first I though I couldn’t make it because the meatballs called for breadcrumbs, but I got some gluten-free bread, toasted it up and next thing I new, I had GF breadcrumbs.  Try it if you’re in the mood for some good authentic Italian food.  

*NOTE: The link here provides you with the regular recipe on Food Network.  If you want my gluten-free version, click on my recipe tab.

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