Tag Archives: homebound

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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Hope For a Better Day

Yesterday was a toughie.  Jes stayed in bed most of the day until late in the afternoon.  It was tough, but I made the executive decision to sit in bed with her.  She was armed with her textbooks and I was armed with magazines and tea.  I massaged her hand and arm when needed and, in general, gave a decent amount of self-depreciating humor.  Well, I did at least until I was banished from the room for talking too much (blush).  But let me tell you, when I WAS allowed to speak, laughing almost always ensued and that, after all, was my main goal.  My thoughts are if your feel like crap physically, then you should at the very least be allowed to laugh as much as possible.

Jes is being a real trooper.  She hurt like heck yesterday, but knows that this is a good course to take in the search for a cause, or cure, and to find out exactly what her symptoms ARE and treat them accordingly.  

Unfortunately she wasn’t able to go to school yesterday.  I gave her a couple of Tylenol PMs last night and HOPE HOPE HOPE that they helped her to sleep a little better.  If so, our goal for today is to get into school for at least one class and to make up the test she missed on Monday.  That would give her two hours so far this week.  I continue to say this, but we are so blessed that the school has been easy to work with.

Lets keep our chin up for a better day for everyone who is in need of one.

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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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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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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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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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School – Continued

I went to wake Jessie up yesterday morning and she said her head hurt.  By the time I was actually able to get her up, she complained of the body aches, headache, etc.  

I spoke with the school and I think we will try to do Spanish 2 and Algebra 2 through the Georgia Virtual School system (a cool thing) and continue with full-time homebound on all of her other subjects.  If everything goes through as planned, it should help out a great deal.  I have to say that the school has been very accommodating so far.  Working with the school in Virginia was like pulling teeth!

The tutor came yesterday and Jes took a lit test.  She will take an Algebra 2 test on Wednesday and another on Thursday.  The girl can self teach, more or less.  I don’t know where this gene came from.  Clearly not from either of her parents! 

I also called the cardiologist to ask exactly what symptoms would be relieved with the Florinef.  I know, duh.  I either didn’t remember this from the visit last week or he didn’t tell me.  In my defense, Jessie has a multitude of symptoms, so I had no idea.  He said the dizziness.  This is going to be difficult to figure out because I think that she had learned to accommodate without even realizing that her symptoms were there, if that makes any sense.  

We have noticed that the color has returned to her face in the past couple of days.  When I say she is pale, I mean PALE, twilight vampire characters pale.  She’s been like that for over 3 years now and no, she’s not a vampire or even a vampire wanna-be.  So we see a difference there.  My very uneducated way of thinking is that if the Florinef is supposed to help her body retain more salt and liquids to increase blood flow and volume, doesn’t it make sense that she would be less pale?  Oh well.  Is it a fluke or related?  Only time will tell, I guess.

Sorry for the rambling and subject changes.  My mind is working that way these days!  Be glad you’re not in my head as it’s a very scary thing.

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