Tag Archives: Orthostatic Intolerance

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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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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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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Throw In A Cardiologist and Even More Medicine!

Today we went to the cardiologist and had an EKG and echocardiogram.  Everything was fine, thank goodness.  Jessie is wearing the heart monitor thingy for 24 hours and it’s driving her crazy!  Therefore, she’s driving me crazy.  Anyway, the doctor went ahead and prescribed Florinef.  This will hopefully do a lot for the orthostatic intolerance.  Jessie went ahead and began taking it today.  

So that’s it until tomorrow.  Today was a long day and last night seemed even longer.  This girl’s getting some sleep tonight.

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