is it possible?

Is it possible that she will be one of the lucky ones? When I talk to people about her illness, which is pretty rare these days, I always add that she is one of the lucky ones. Relatively speaking, things are going extremely well. Her life is practically normal given the fact that she no longer attends regular school and is highly medicated. I really can't and won't complain. She is unbelievably social - so much so that I lose sleep, so I guess we're normal! We're counting our blessings and, as always, remaining hopeful.

and speaking of being medicated...

See the highly medicated box? I almost bought this for her yesterday but didn't for only one reason. You may think that the reason is that it's kinda, sorta odd to put a pillbox holder that is sparkly and has "highly medicated" written across the top into the hands of a 17 year old. Well, that's not the reason. I didn't buy it because it was $29.00. $29.00! Anyway, it was sized perfectly - large enough compartments to hold her pills, a.m. and p.m., AND the best thing (aside from the fact that it was kind of cute) was that it was small, about 5-6 inches by 4 inches, zipped closed and housed a perfectly sized pillbox for traveling. Call me crazy, but I loved it. (I'm going to have to figure out how to make one of those suckers.)

So, for the medication. Believe it or not, we FINALLY weaned her off of her morning dose of Lyrica. Hooray! It only took five months, but it finally took. She's now on Lyrica at night, 25 mg. She still takes the Pamelor, 50 mg at night, Florinef twice a day, and a multitude of supplements. Dropping that Lyrica was a milestone. No more splitting capsules - Yay!

I sincerely think of you all often and hope you're enjoying life.

Stay happy and full of hope. Until next time.

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Check Out

{What a picture! Me in the studio w/ Jessie and her face scrunching}

I have had to check out a little for the past week. With spring quickly approaching, business has taken over and I'm barely coming up for a breath!

I do have a quick little update:

Started backing Jessie off of her morning dose of Lyrica and every time I do, she gets those pesky little headaches. I called the doctor and the pharmacist yesterday and asked it I could actually split a capsule. Unfortunately Lyrica only comes in capsules and 25mg is the lowest dose. What we decided to do is to give her half of a capsule each morning (cutting her to 12.5mg - a little easier). So, we just did that yesterday. After a week or so we'll know if it's working. Dropping 25mg cold turkey was just too much for my little munchkin.

Also, we went to the gastroenterologist last a couple of weeks ago for a recheck and he did the blood work to check for gluten. He found it. So either I'm missing something in the diet or the little munchkin is sneaking a few gluttonous bites! Actually, when she was originally tested, her level was very low, but still positive for celiac. This time, the levels were much higher! Hmm...

It seems that while Jes had no outward symptoms of celiac originally upon diagnosis, she has begun to get stomach cramps and all the other bad stomach stuff when she's accidentally exposed. So maybe her celiac is getting worse as she ages? Just an uneducated theory.

Anyway, I'm in my studio as this is being written and MUST return to the grindstone.

Hope you're having a splendid introduction to spring.

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Here's What We Did

First, I want to say something to Forgetful Girl. Forgetful Girl, I couldn't find a contact link on your blog and, I don't know if it's just me and my computer, but I also couldn't leave a comment, which sucks because I love to leave comments! LOL Like I said, it may be me, but if you've noticed that you've received no comments at all and are stumped, contact me and I'll see if I can help. Just a thought. :)

OK - I hope that the football-watching readers enjoyed the Superbowl last night. We did. Traditionally, we consume way too much junk food. See, here's the thing. If you schedule it for a particular day, like Superbowl Sunday, it's calorie-free, fat-free, and guilt-free. I'm not sure how it works, but it does. Trust me. :)

{This is Jessie balancing a plate of roasted peanuts on

Oreo, the sleeping, practically catatonic cat.}

{This is Jessie trying to look elegant while

feeding Sophie, the begging dog, and irritating

Oreo, the sleeping, practically catatonic cat.}

Oh, the other thing is that you HAVE to eat this on the sofa. Eating at the kitchen table would ruin the ambience and, well, it would just be wrong.

This is what we had and remember, we don't hate people who eat guilt-free junk food once a year. We had barbecued chicken wings (protein), margarita pizza (fruits & veggies), Jessie had her gluten-free bbq chicken pizza which she copies from the California Pizza Kitchen recipe, (I had a salad because even though I SAY it's guilt-free, I was born with guilt), roasted peanuts (more protein), strawberries dipped in chocolate (fruit and chocolate, which defies all catagories), and finally milkshakes (calcium). I know. It's enough to send anyone to the hospital. But if you do it in moderation, you come out of it quite refreshed!

Moving along...

Jes has done great. The headache has gone somewhere else and not returned. Yay for that!

As for the California Pizza Kitchen recipe... Here's what we do. Jes uses her favorite gluten-free pizza crust and tops it with GF BBQ sauce (we use Kraft), mozzarella and smoked gouda cheese, sliced red onions and shredded, cooked chicken. That's it. Sounds a little odd, but take my word, you'll love it.

Have a great week! :)

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Chicken Satay Stir Fry

I adapted this from a Rachel Ray recipe on Food Network. It will be a new staple for us because it was dee-lish! Try it out

This is not copied exactly from Foodnetwork.com. I changed up a few things.

What's below is my adaptation. Go to the link for the actual recipe. You could really change up the vegetables to suit your taste, we did. The main thing is the satay sauce.

Chicken Satay Stir-Fry with Orange Scented Jasmine Rice

Rice:

3 3/4 c. water

2 oranges, zested

2 cups jasmine rice, rinsed

Stir Fry:

2 tbs. canola oil

1 pkg. (about 1.3 lb.) chicken breast tenders, sliced into bite-sized pieces

3 cloves minced garlic

1 onion, sliced

1 green pepper, sliced

1 bunch fresh broccoli

about 4-5 baby portabello mushrooms, rough chopped

*The original recipe uses onion, peppers, carrots, garlic, snow peas, & scallions.

Satay:

4 rounded tbs. peanut butter

3 tbs. GF soy sauce

3 tbs. honey

1" of ginger root, shredded

1 clove garlic, minced

1 tsp. crushed red pepper flakes

1/2 orange, juiced

*As the sauce warms, it thickens. You will probably want to add a little water to thin.

Garnish:

chopped peanuts

Heat water with orange zest to boiling. Add rice, return to boil, stir. Cover pot and reduce heat to simmer. Cook rice until tender, about 18 minutes. Fluff with fork.

For stir-fry, heat a large skillet to high heat. Add oil, chicken, garlic, and onion. Stir fry for 3 minutes. Add remaining veggies and stir-fry 5 minutes more.

Heat the ingredients for the sauce under low heat in a small saucepan, whisking to combine.

When ready to serve, I added the sauce directly to the stir-fry pan.

Enjoy!

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Weaning

Jessie went for a six month check today with her primary care physician and the report was good. She hasn't gained too much weight from the Florinef and, as you know, is becoming much more active. We're going to try to wean her at a snail's pace from the Lyrica over the next 12 months. The general consensus is that she will be on Florinef and Pamelor for an eternity, but she may be fine without the Lyrica.

We won't begin the weaning process for another few weeks because we're heading back to Virginia this week for five days and she always overdoes it a bit when she's around friends. We'll wait until her system has a chance to level off after the trip. If she lowers her dose now, we won't know if the side effect is from that or from playing too hard. So it's best to wait. After that, I'm going to decrease the Lyrica from 25mg twice a day to only once at night. If that goes well, we'll see about reducing it a little more after six months at that dosage. It sounds like so little, but we're both very excited to try it.

The doctor asked what we are planning for Jessie's education next fall. I think that the way this has worked out (junior year at home online), a slow transition back will be easiest. She'll only need one more high school credit her senior year and there's a university about 20 minutes away. If we're lucky, she can pick up a few credits there on a part-time basis. That will give us a decent indication as to whether or not full-time college is within her reach.

It's overkill, I know, but as I said, we're going back to Virginia on Thursday for a long weekend. I'll be house/pet sitting. Wes is living there now and we will get to see him. I'm not only weaning Jessie from a medication, but Jeff and I are being weaned from our son. How's it going? I'm okay, Jeff's not so great. He misses his buddy.

I'm holding my breath right now, though, because we may have to buy a car for him. He HAS to have a car and his truck, which is about to cross the 200K mark, is making seriously scary noises. AGHH! I hope it's not too costly because at this point, you don't want to sink $1000 into an already old truck. I guess, as with everything else, I'll count our blessings and cross that bridge if we come to it, right? Right.

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Back From the Holidays AND a Road Trip

It shouldn't come as a surprise to our regular readers that we've been on another road trip. My son, Wes (who moved back to Virginia to attend school - boohoo) and Jessie headed seven hours north after Christmas. After a week of "empty-nester-marital-bliss" I drove up to Charlotte on Sunday, spent the night with my mom, then met Jessie and a friend (who graciously offered to drive Jes to our usual halfway point - thank you very much friend).

The truly surprising thing is that other than being REALLY tired and needing a good night's rest, Jes was fine. She told me that she only had one instance of the dizzy head rush - aka orthostatic intolerance.

It amazes me that she has reached the point that she can spend eight days surrounded by teenage friends, constantly being on the go, and staying up into the wee hours of the morning. Any stranger would take one look at her and say that this girl is totally healthy.

Anyway, only her friends and I know that if she stopped taking her substantial amount of medication, a total relapse would occur and she would be confined to her bed or the sofa.

I thank God for her friends, who don't question that Jes sneaks rest periods in when no one is looking. I'm also thankful that she has friends who provide her with something salty when she's feeling light-headed, force her to slow down to watch a movie, and remind her to take her medication.

That's what friends are for, right?

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Another Brief Hello

Jessica is continuing to do well. We all hold our collective breaths and keep our fingers crossed and say our prayers.

I've made a little executive decision to cut back on her Lyrica. She's currently taking Lyrica, Pamelor, and Florinef along with a ridiculous amount of supplements. Pamelor is for insomnia and migraines. Florinef is for the neurally mediated hypotension. The Lyrica is for joint and muscle pain. She's been taking it in the morning and at night, so I've cut back to just one dose a day (25mg). We'll give it a week to see if she has any side effects, but I have a feeling she'll be okay.

I think that the lifestyle we've settled on for the time being is the best for her (schooling at home so that she can have a social life). I'm not sure how we'll handle college. One day at a time, right?

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A Road Trip, A Gluten-Free Recipe, and Medicine Avoidance

Here we go again - this time to North Carolina to deliver a portrait I've been working on. (That would be my other job.) Jessie and I will also get to visit my dear mom.

Jes has continued to do well except that, true to her irritatingly teenage tendencies, she did NOT take any of her medication yesterday. Where was the medication-watching ogre? Hello, she was doing her other job! Anyway, needless to say the little brat, um...girl, slept terribly last night. Here's hoping that missing two doses won't create too much of a problem. Medicine ogre will be sure to give the little *&^%* melatonin tonight to get the ball rolling.

Moving along...

Below is a super easy steak marinade that has become one of our favorites. It was originally written to be used with flank steak, but I've used it with london broil and tonight with a thick sirloin. It goes great with rice pilaf.

Shucks! Where was my motherly ESP when I needed it? Had I known that Jessie needed melatonin, I would have cooked turkey tonight instead. Over-anxious mom here is beginning to fall down on the job. Shame. Shame. :)

Soy, Ketchup, and Sesame Marinade

3/4 cup gluten-free soy sauce
1/4 cup ketchup
1/4 cup chopped scallions
1 1/2 tbs. sesame oil

Combine all ingredients in a large zip-top bag; add 1 lb. flank steak trimmed of excess fat. Seal bag, and refrigerate for 4 hours or overnight. When ready to cook, remove steak from bag, and discard marinade. Grill steak 6 minutes on each side or until desired degree of doneness. Remove from grill, and cut diagonally across the grain into 1/4 - 1/2 inch-thick slices.

Enjoy!

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Looking Up

I'm posting a few pictures from this weekend. Jes and her friend, Frank, had a blast going to a local pumpkin patch, then carving Minnie and Mickey Mouse jack-o'-lanterns. It took all afternoon, but they sat on the porch and enjoyed the sun. Things are looking up.

Enjoy the pictures.

Notice the phone? Open and ready for the next text.

A little scary, don't you think?

A glimpse of the evil eye.

Cute. And the pumpkins are too bad either!

Almost done.

What a great day.

Hope you enjoyed our pictures.

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F-F-F-F-Friendship F-F-F-Friday

That's my scary, it's almost Halloween, title. Creative, don't you think?

I only have a couple of blogs to share today as I've been a little slacker this week. Been working on my other job. How's it working, you say? NOT TOO GOOD. I've been painting a portrait this week and I'm now reminded of exactly WHY I hate to paint portraits. Moving along...

Sick Momma, by Aviva. I love her writing style and sense of humor.

Off the Wheaten Path, by Mrs. McKracken aka Margo Anderson. Mrs. McKracken? Yes, you heard it right. Love the name. Margo also writes about autoimmune disease.

*Brief update*

Happily, Jessie is doing quite well this week. Last weekend's adventure had practically no effect. Could she be pulling out of the woods? Possibly. I think that pulling out of school and dropping that difficult routine may have done the trick for now.

Jessie's doing her schoolwork at home during the day and is able to see friends more often. It's a good thing! Works wonders for that laser-eyed, "Don't look my way or speak to me or I'll scream" attitude. She has been busy for the past two nights and will be babysitting 4 year old twins this afternoon for a couple of hours. Sounds like a regular, spoiled rotten, obnoxious, killing her parents, happy teenager to me.

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Survival

Happily, we survived the weekend. Jessie did well. Her boyfriend, who is very much aware of her condition, is great at balancing activity with rest. They watched tons of movies, including the Exorcist, which I now know why I never watched in the 70's - UGH - disgusting. The staged photo is a carryover from the awful horror movie lineup. Nice and convincing, huh? Jes needs to work on her menacing look. I'm not sure what Nathan was planning to do with a meat mallot and a bread knife.

After taking Nathan to the airport Sunday evening, Jes went to bed with a killer headache at 8:30 and slept until 9:30 Monday morning. I'm thinking, "Oh great. Here comes the punishment for having a big weekend." However, after 13 hours of sleep, she woke without a headache and worked hard on school all day long. Now if she makes it past the 2-3 day delayed crash zone, we'll be good to go.

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IIItttt'ssss Friendship Friday!!

A little lame? Could be, but I'm having trouble coming up with a regular title. So until I do, I'll will continue with the "HEERREE'S Johnny" routine. So sue me...

Moving along, I've found a few new friends this week. I'm going to share the love and wholeheartedly encourage you to do the same. Feels good.

On the ME/CFS front I've found:

Fibro Viv lives in Texas and you can visit her at Invisible Illness CFIDS/FMS.

Catherine Morgan is a writer and nurse with CFS. She's over on Wordpress at Living With Chronic Fatigue Syndrome

Another Wordpress discovery: Rachel at the Blue Coffee Mug

AND on the Celiac front, I've found:

Wasabimon, a beautifully colorful, fun blog.

Learning How to Cook...Gluten Free

and last, but certainly not least, one of my original faves...

Brian, the fireman, over at Fire and Salt.

Pay all of these good folks a visit. They really are pretty nice. :)

Finally and perhaps most importantly:

Pray for me. Pray hard for me. Nathan, aka Satan himself, is flying in for a weekend visit. Oh, I'm just kidding. I love Nathan to death - good kid. I will, however, be braving Atlanta's wonderful 5:00 rush hour traffic as his flight arrives (hopefully on time) at 6:00. It's sure to be a lively, fun, action-packed weekend. Pray for me. I'm not joking. Teenagers in love, it's an unnerving thing for 40-50ish parents.

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A Young Girl In Love

Well, she is. On our trip last week, we stopped off in Charlotte to visit our favorite store, Anthropologie, and to have lunch. (This was during the sore throat but before the fever.) Anyway, this book quickly caught Jessie's eye and she was glued to it, which is saying something when you're surrounded by beautiful clothing in Anthropologie!

Double-Chocolate Crumb Cake, Lemon-Poppy Teacake, Carrot Cupcakes...

The book is called Babycakes: Vegan, Gluten-Free, and (Mostly) Sugar-Free Recipes by Erin McKenna. Oh people, it's a keeper. Babycakes is well written and beautifully designed. It's a feast for the eyes as well as the tummy. A few of the ingredients were new to us, but we easily found them at Whole Foods.

As I said, it's a keeper.

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CFS, Homecoming, Road Trip, Movie, and a Virus

It's over. We're home. Cleanup after two very nasty males and enough laundry to clothe an army has been completed.

It's been an eventful week! Jessie (above in the blue) and I went to Virginia so that she could go to a homecoming dance with friends from her former school. Unfortunately, her date became sick within 15 minutes of arriving and had to leave. Fortunately, she was surrounded by tons of friends so she still had a blast - sans the boyfriend, who is, by the way, NOT the happy dude in the white bow tie. (Isn't he a cute little riot?)

The day after we left for Virginia, hubby became sick with a nasty virus that we thought was the flu. He even went to the doctor and was given Tamiflu. He was completely over it and back at work in three days. While on the way home from Virginia, Jessie became sick with the exact same virus. We went to the doctor and she tested negative for the flu. This will be the sixth day and I hope she wakes feeling better. The fever is gone, but a nasty cough remains - along with the typical CFS backlash of achy muscles. Of course, we half expected the CFS flare after such an active long weekend.

Oh, one more thing. Jessie talked me into reading the Twilight series last year. We're not fanatical fans, but we are looking forward to the second movie, New Moon, which comes out on November 20th.

Here's the trailer. Any Twilight fans out there?

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Road Trips and Gluten-Free Cookies

Gluten Free Chocolate Fudge Cookies from RecipeZaar.com.

First, these cookies are to die for - if you have celiac, if you DON'T have celiac, if you like to eat cookie dough. Hands down. The bomb. Jessie made these for the second time yesterday during our rainstorm from hell. She tends to get carried away with the powdered sugar, so it may be a little hard to tell that they are actually chocolate cookies from the picture. Seriously, try them. You won't regret it.

We are excited because in just two days, count them, two days, we're going on another road trip to visit our friends in Virginia. The guys, who have been sufficiently loaded up with Lean Cuisines and frozen hamburgers, are going to stay home and hold down the fort. Jes will be going to homecoming at her former high school. I get to see my friends, Jes gets to see her friends and boyfriend, go to a football game, a dance on Saturday night, and Young Life with her friends on Monday night. If we survive all of that, we will return sometime next week. The nice thing is that Jessie will be taking school along with her and can work on it during the day while her friends are in school.

Hoping everyone has a wonderful, healthy upcoming weekend. Movie night? Make these cookies!

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Blogging for National Invisible Chronic Illness Awareness Week

I'm blogging today because it's National Invisible Chronic Illness Awareness Week and one of the most important things for someone who deals with this type of illness is to get the respect and support that they need.

As a parent and caregiver, I constantly have to read about CFIDS to remind myself of what Jessie is going through. Understanding the illness is hard to wrap your brain around from a distance. First hand, I've seen what it does to a person's life - it's truly debilitating.

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Boys and School and Shots

Interesting title, isn't it?

First, the boys:

This is my son, Wes - the one who doesn't like being written about or photographed. I love this picture of him. (He's not the bald one or the bearded one - I'm not THAT old) This picture was taken as he was racing in a mountain bike competition in Snowshow, WV a couple of weeks ago. Isn't the view great? And don't you love the red zebra outfit? :)

School:

Jessie received her school stuff yesterday and, even after assuring me that she doesn't need any help and to PULEEZE leave her alone, I tossed and turned all night long worrying - as every good mother should. Just doin' my job. Her English Lit and Spanish III are completely online and the other courses (Advanced Algebra/Trig, US Government and Chemistry) are online with an actual textbook. It'll be an interesting year.

Now, the shots:

Who out there rushes out to get a flu shot? I've heard and read both ways for CFS patients. For us, Jes has had a flu shot with no side effects each year since she's been sick. So I think she'll be getting one, especially since it's so bad this year. Then she'll get the other when it comes out in October. Are you getting the shot?

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Calling All Gluten-Free Gourmets!

Okay, so I've planned a fabulous menu for this week - something that makes me ridiculously proud of myself and my planning skills. I've shopped for ingredients.

It's Wednesday night and I'm trying something new and exciting, roasted red pepper soup. I pull up the recipe to give it a quick once over. This is the precise moment that the true ditz in me begins to shine brightly. What??? How did I miss the recipe calling for sixteen slices of french bread? I seemed to have found the only existing recipe for roasted red pepper soup containing bread. GEEEEZ.

Dinner plans, once again, scrapped. Send the kids out for substitute dinner ingredients. Receive no less than five telephone calls from said kids as they search the aisles of the grocery story. Come on people, how hard is it to find hamburger?

After researching again, I lucked up and found a substitute recipe. I'll be trying it soon. (Remember, if you've read my profile, I'm a gourmet WANNA-BE, not a gourmet.)

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New Week, New Season, Fresh New Start

That's the way we feel. Jes is excited to get started with school. We've sent her transcript to Keystone and will, hopefully, hear something today. At first, we were limiting her to one AP course, but then I realized that she's fully capable of taking more than one. The only real difference between that and an honors level is that she will take an AP test in May to possibly earn college credit for the class. We are so lucky that she hasn't had the "brain fog" that so many have to deal with when they have CFIDS.

Jessie has now inherited my "old" laptop and I got a NEW one - a win/win situation, in my opinion - and I'm pretty sure that she's loving that more than anything. I'm still in the process of transferring everything over and cleaning out the old one - a bigger job than I'd previously thought.

Anyway, Jes seems to be plugging along. She's able to do small trips, but nothing over a couple of hours. (She did get to go to a football game Friday night.) I think this flu thing that she had really knocked her system for quite the loop and it's taking more than a couple of days to recover. Luckily right now her only symptom is the tiredness and it's not excessive.

Have a great week.

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Odd Quote of the Day

It's been an interesting week, what with pulling Jessie out of school.

As we're walking out of a restaurant, Jessie says, VERY nonchalantly,

"Thank you for buying me lunch. And thank you for letting me drop out of school."

I had to laugh.

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