Tag Archives: hope

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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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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