Tag Archives: me

New Celiac & CFIDS/CFS/ME Posts

We’ve moved to a new location.  Below are the most recent posts:

ME/CFS: What It Feels Like

The One Thing About CFS

Life Changes and Adjustments

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New Celiac & CFIDS Posts, New Location…

Yes, we have moved to our new address.

Hop over and join us.  BE SURE to SUBSCRIBE because we can’t keep double-posting.  The pace is killing us.

We have two new posts titled:

Go ahead now.  It’s time to mosey over.

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Friday! Friday! Friday!

Yippee.  Fridays are always good.  Except this weekend it’s supposed to rain all day on Saturday and both Jeff and Wes are helping out at a biking competition.  Sounds like fun, huh?

I’m making this quick because I have to be somewhere early this morning.  The entire week was more or less a bust.  Jessie kept claiming that she was feeling a touch better as the week went on, but I’m not seeing it.  She REALLY doesn’t want to pile all of the meds on again.  I am sure that she needs the Pamelor, or at least something similar.  She did not make it into school at all this week and will HAVE to drag herself in today for at least two hours.  If not, we have to turn back to full time homebound.  I think I may call the cardiologist today to ask what we should do.  I thought our appointment was next week but it’s actually the NEXT week and I really don’t want to see Jessie in this kind of shape again next week.  

Well, I think that’s it.  I have to add that this past week, Jessie made gluten-free shortcakes for strawberry shortcake and it was fabulous.  I liked it better than angel food cake or the yucky pre-packaged shortcakes.  I’ve failed miserably posting products and recipes.  Maybe I’ll make up for it this rainy weekend.

Have a wonderful weekend.

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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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Saturday

Yesterday was not too bad.  I thought Jessie was doing fairly well.  She did her stretches and then we went to the grocery store (one of her favorite places, oddly).  Last night, however,  she reported that she’d felt really “off” all day and went for the herb pack, which is something we keep in the freezer that Jessie uses for bad headaches.  She turned down her headache medicine though with hope that it may just pass by morning.  

I just tried to get her up, so we’ll see what the day holds.  She isn’t going to school at the moment, but we try to get her to attend church with us if she’s able since it’s usually just for one hour.  I sure hope it’s a good day.

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