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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2 Comments

Filed under Daily Chronicle

2 responses to “Where Are We In This Game?

  1. Sue

    Hi, Lori –

    I’ve been out of touch with the blog world this week – rough week for me. I’m so sorry to hear that Jes is having a rough time, too. I was wondering exactly what medications she’d stopped recently, and in this entry you mentioned Pamelor (notriptyline). Jamie and I both take nortriptyline to correct our sleep dysfunction, and neither of us would ever give it up, not even for a night! Getting good quality sleep is just too important. When I was first diagnosed, my doctor said the first thing to treat is the sleep dysfunction because if you fix that, then everything else is improved…and she was right! It took awhile to find the right meds and doses, but now, with nortriptyline and trazodone (for me, just the nortr. for Jamie), my sleep is normal, and I wouldn’t give it up for anything. (Jamie also takes 1 mg melatonin for sleep).

    I don’t know much about Lyrica, since pain isn’t an issue for me, but you might want to at least try getting her sleep corrected again with the Pamelor. It makes such a big difference!

    I hope things improve for you – believe me, I know all about the rollercoaster!! You’re both in my thoughts.

    Sue

  2. My heart goes out to a youngster living with chronic illness, as I can barely handle it at times. Prayers and hugs!

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