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Okay friends, strangers I hope will become friends, and anybody else who’s interested. I’m trying to transition our Living Chronically blog over to it’s new and more “Lori friendly” home. After you’ve made that all important leap of faith, I’d love for you to join in. Please click on “The Committed” button to join in and I’ll be able to jump back and visit you some time as well! If, for some unknown reason, you aren’t comfy doing that, you can click on “The Alternative” button. I and my other blogger friends won’t have the pleasure of seeing your pretty profile on my blog. But, hey, whatever floats your boat. The important thing here is to jump.
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P.S. Please be kind. It’s a work in progress and beauty sometimes takes it’s own sweet time.
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.
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
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.
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.