Monthly Archives: March 2009

The Pity Party Is Officially Over

Me - Last Week...

Me - Last Week...

 

The pity party has ended.  Isn’t it amazing how you deal with life’s difficulties pretty darned well  and then some seemingly little thing slams into the side of your head without warning and sends you into a tailspin?  Yep, it’s the basic straw that broke the camel’s back.  Well anyway, it’s over and gone.  Silliness has returned to our household.  Life does, in fact, go on.  Blah blah blah.

The week has started out on a higher note.  Jessie was going to try to go to school yesterday, but things just didn’t work out. Today was better.  Dental appointment at 9:30 (NO CAVITIES after 2+ years of braces!) and then she went to two classes. Yes you heard it right here, two classes in one day.   

It’s a bad sign when you go to your Lit class only to realize that you’ve gone to the right class at the wrong time.  Yep, it happened.  But Jessie laughed it off.  She did report that she was in trouble for talking within the first five minutes of being in Biology (once she found the class.)  Ahh, you can be sick and still manage to irritate your teachers.

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Friday Update and The Grieving Process

It’s been a long week.  Jessie hasn’t been able to attend school any more this week since the one class on Monday.  Sleep has been practically nonexistent.  We added back all of the medication last week and the Charlotte doctor said that we should try increasing the Lyrica if Jessie continues to have trouble sleeping.  So I’m going to give her 50mg tonight instead of her usual 25 mg.  For some reason, I don’t think that will make much difference.

We got the news this week that the school is not going to recommend honors or AP classes next year (11th grade) for Jessie. The reasoning for this, according to administration, is that she can’t get the full impact of the course (lectures, discussions, etc) while working from home.  I was surprised when we got the news and Jessie argued at first, then realized that there is nothing she can do about it.  This may be hard to understand, but hearing those words was like a slap in the face.  First I felt a sense of relief, then confusion, a bit of anger and then more confusion.

Jessie is one of the rare cases of CFIDS that doesn’t have the brain fog or cognitive issues.  In fact, throughout the past three plus years of dealing with this debilitating illness, she has remained on the honor roll, making only a few B’s.  She’s been blessed with a gift of knowledge that absolutely didn’t come from her mother!  Anyway, the news leaves me torn.  I know that Jessie will have less stress next year in regular classes, which is a good thing.  I’ve never been academically tough on my daughter.  In fact, her dad and I have both encouraged her to take fewer advanced classes lately to relieve stress.  However, I know my daughter.  Jessie’s bar for herself has been set incredibly high regarding her classes and her grades.  She always insists on taking rigorous classes and strives to make only A’s. 

Since Jessie’s had this illness, she’s been robbed of her teen years.  She can no longer participate in sports.  When she’s sick and even many times when she’s not, she isn’t up to participating in extra-curricular activities because energy has to be carefully measured.  Also, when she’s sick, she doesn’t feel up to seeing friends.  This past year we had to move to another state and Jessie was taken away from her support system, her friends.  Because she was only in school for two months, she didn’t have the chance to create the friendship she desperately needs.  This move was very difficult for her.  

So, basically the only thing that Jessie absolutely KNOWS that she has is her exceptional ability to learn.  Now because of this stupid disease, she will have to attend classes that she will literally float through.  Jessie wants to work in medicine, possibly becoming a doctor.  She jokes that she’s had so much experience recently with doctors that she may as well become one.  

Don’t get me wrong, I am at the opposite end of the spectrum when it comes to pushy “helicopter” parents.  I’ve been more in favor of quiet time than over-booked days.  Before this illness, activities and sports were limited.  Now however, I don’t know what’s right for her.  Under normal circumstances, this girl is fully capable of taking dual-credit high school courses in the 11th grade.  She has aced honor courses for the past 3 years while attending less than half of the actual classes.  Is it right to make her take a lower level class, beneath her true ability?  Will this yank out the one thing she has now that gives her pride?  

On the other hand, we know that we’re not talking about normal circumstances.  Will taking the regular classes give our daughter time to breathe and maybe a little more energy to attend a few football games and dances?  Is this part of the grieving process I’ve read about for parents of chronically ill children?  Is this a parent’s guilt after uprooting a teen and making her move to another state, away from her friends?  Most importantly, where is a good psychiatrist when you need one?

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A New Day, A New Doctor

We went to see the new PCP today and really liked her, thank goodness!  She said the magical words Jessie’s been hoping for all year; she’s hoped for these words even more than the possibility of hearing, “I don’t think you have Chronic Fatigue.”  The new doctor said, “I’m going to send you to the gastroenterologist to do a recheck on this Celiac thing.  It may be a good idea to have another endoscopy.”  Yep, the girl is holding out hope that she can eat wheat.  Of course, I quickly added that she needs to be prepared to hear that she does indeed have this disease.  

In all honesty, we are a little confused as to what, exactly, she’s having trouble with.  Jessie ate Chick-fil-A chicken nuggets last year and didn’t have a reaction.  She continues to eat the prized nuggets regularly without side effects.  In every other aspect of her life, she is gluten-free.  Yet she has a reaction when she eats cross-contaminated rice.  I guess a second check would be interesting.  

The doctors are certainly making their money off of us this week.  We go back to the cardiologist tomorrow for a recheck. He’ll have to get the sad news that his experiment failed and Jessie is back on all of the medication.  

I know I’ve said this before, but wouldn’t it be nice if you could just kidnap all of your doctors and put them in a room together?  Then they would discuss their various “theories” and ultimately reach the perfect solution or cure.  That’s just not real life, is it?  I guess I’m dreaming again.  Shame on me.

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What’s With the Gluten-Free Metallic Taste?

 

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What is with this metallic taste?

Please tell me.  If you happen to be an experienced gluten-free baker, please tell me why are our baked items coming up metallic?  You can almost see a silvery sheen in the light!

Jessie has tried several batches of cornbread which turned out metallic.  We threw out the flour and started again.  It only happens with gluten-free recipes.  It’s not the oven or the baking dish.  The same thing happened when she tried baking brownies.  

I am beginning to wonder if xanthan gum may be a common denominator. However, what do we use as a substitute?  We are calling out into the worldwide web searching for a solution to our dilemma?  Any thoughts out there in gluten-free internet land?

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She Went to School!

Okay, Jessie went for one class today, but it was a real achievement in our neck of the woods.  I don’t even remember the last time she was able to make it in for a class.  

After adding back all of her medicine last Thursday, it finally began to kick in a little on Sunday. Unfortunately, Jessie picked up her dad’s cold.  Time out for common cold cursing.  We have an appointment with the new primary care physician tomorrow, so if there is infection in the vicinity, antibiotics will be had.  I have to add that just the thought that a multitude of supplements isn’t enough to prevent illnesses in any form is beyond me.

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A Serious Pile of Supplements and Medication

AM & PMMy pile is bigger than yours.  

Sadly, but I suppose not surprisingly, all of Jessie’s initial symptoms from 3+ years ago returned when she went off the medication. We had a telephone appointment with our Chronic Fatigue/Celiac specialist this morning and she told Jessie to begin again with the meds.  She even added another supplement to the list.  Also, if she doesn’t begin to feel a little better soon, we’ll add a low dose thyroid medicine to the pile.  I’ll have to try to take a picture.  This is what she’s taking:

Pamelor, Lyrica, Florinef

Multi-Vitamin, Fish Oil, Calcium, CoQ10, Magnesium, B Complex, B2, B12 and now D3.  Her pill box runneth over.

Jessie has to drink at least one large gatorade a day, increase her salt and protein (she’s eating those little salt-laden packets of peanuts each day.)  The doctor suggested making our own beef jerky to give her the needed protein and sodium and to keep her blood sugar up.  I picked up a package of Turkey Jerky today, which is loaded with sodium (700mg) and protein (15g) and only has 80 calories.  The girl would not TOUCH it.  That is a topic for another day.

I’m pleased to say that we need to add a pediatric gastroenterologist to our little party of physicians as well as a new primary care physician.  I like to think we’re doing our part for the economy by helping out the poor, starving, severely underpaid medical specialists.  

That’s all for now.  Have a wonderful evening.

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A Reason To Celebrate

 

A sad photo...but SOOO good!

A sad photo...but SOOO good!

 

No, Jessie isn’t magically better.  She’s still plugging along.  I guess the first night was a fluke and it’s taking a bit to get the medicine back into her system.  I think she’s improving at a snail’s pace.  Still no school, but I’m hopeful that today she’ll wake up a bit more refreshed and can go in for a couple of classes.

Last night my husband got some really good news with his job and I’m not allowed to give specifics.  But suffice it to say that we made Jessie go out for a celebratory dinner last night.  We went to Outback and at the end of the meal, Jessie begged me to share a Chocolate Thunder From Down Under.  I was so full from my dinner that I couldn’t.  We let her order it anyway because it’s one of the only places we know of that offers a gluten-free dessert.  Even if you can gobble gluten happily, you haven’t lived until you’ve tried this dessert.  It’s to die for.  

In the end, keeping the tradition and philosophy for all women around the world, I ate chocolate, and ate, and ate.  Jessie and I attacked that dessert like nothing I’ve ever seen. The guys were talking and a few minutes after we’d received the dessert, they happened to glance in our direction.  Their mouths fell open and they died laughing.  The plate was completed clean and we looked like two fat cats who’d just eaten the prized canary!  

After dinner, we came straight home, put on our jammies (not the guys – that would just be wrong), piled onto the sofa and all four of us watched American Idol.  Go Megan, aka – Twirly Girl.

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