An Update

Thursday, October 14, 2010


living chronically cfids

Good Lord - I haven't posted since May. For shame. For shame.

Thought I'd add a little update and let you know that I still lurk around here and there. Personally, work is keeping me busy, especially at this time of year. Seriously, I was thinking about Christmas in September. Sick.

I'm happy to report that in terms of CFIDS, Jes is doing well. She's still on her regular medication and we continue to try to whittle away a bit of it. For now, we're trying to rid our lives of the Lyrica.

She continues to have occasional migraines. BUT she hasn't had to take the heavy duty medication OR visit the ER in over a year. That's improvement people. If she gets a migraine, she can usually sleep it off.

Aside from that, she has a boyfriend, runs around constantly, drives her parents nuts, is finishing her senior year at home, and just took the SAT.

I'm saying this because there is hope.

ALWAYS hope
.

Now I'm going to throw something in your general direction. If you are home bound and/or chronically sick, helping others always seems to lift the spirits. Heck, it lifts the spirits whether you're sick or healthy. Unfortunately it's hard to do when you're confined much of the time. This is an alternative you should look into. I've recently become involved with a group called:

ItStartsWith.Us

Visit this site. They're better at getting the point across, so I will leave it at that. Learn about dropping love bombs. It'll do your heart good to so easily make someone's day brighter.

Until next time, you're always in my thoughts and prayers.



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is it possible?

Sunday, May 30, 2010


living chronically cfs/me

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.

living chronically cfs/me teens

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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you had me at hello

Sunday, April 25, 2010

Odd title, yes? Last night was prom night for Jes and we, against all odds, stayed awake until she came home. What did we do? We watched Jerry McGuire, which I haven't seen in so long. Totally entertaining. Enough about that. Here are a few pics.

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What happens when you're double jointed and try to do the vogue pose.

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awwww.

They had a blast at the prom. Jessie did well, rested lots and feels great today.

Brief medical update:

We're still trying to decrease the Lyrica. It's VERY slow going and amazingly hard to even say whether she actually NEEDS the medication or that her body is so used to it. Time will tell.

Hope everyone is doing well. I'm still keeping up with your blogs even though I'm not posting as often here. Take care.

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just in case you needed a laugh

Sunday, April 18, 2010




Hope your Sunday is beautiful.


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Here We Are

Tuesday, April 6, 2010

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Well friends, here we are. I've reached a conclusion and am ready to admit that I need to take a break from writing (or feeling guilty for NOT writing) here at Living Chronically. Lately, Jessie has been blessed with wonderful health. We are so thrilled and hopeful.

Here at LC, I feel as though it's a little silly to give updates for someone who is well. This blog will still be here because I love reading about and staying in touch with all the wonderful friends I've "met" over the past two years. So I'll be checking my blogroll daily and staying in touch.

Please stay around, too. I will be giving updates from time to time. But it's kind of like when you leave the doctor and say, "Hope I don't see you any time soon, doc!" Know what I mean?

Until then, here's hoping I don't have any updates to report. Take care. :)

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Hello Friends

Monday, March 22, 2010



Just a quick hello. Jes and I returned last night from a weekend visit to my mom's. We had a great time, eating strawberries and chocolate, watching movies (such as the one above), lunching, and even a little shoe shopping - pretty nice, huh?

Jessie is doing well. On the way back last yesterday, we stopped off at the BCBG outlet to shop for a prom dress. What felt like 50+ dresses and no decision. I think she gets her decision-making ability from her mom - poor thing. She's been living so "normally" lately that we're able to enjoy extended time out as long as we bring along salty, gluten-free treats.

We found little snack bags of salty peanuts at Sam's - perfect to keep in the purse. The small bottles of Powerade also tend to tag along as well as Kind bars (fruit and nut are SO good).

If you have orthostatic intolerance, what do you like to take along as your safety net?

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Well Said - My Favorite Word...

Wednesday, March 10, 2010


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Well said.
If you can't trust a fortune cookie, now what can you trust?

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Check Out

Tuesday, March 9, 2010

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{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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Gluten-Free Potato Soup for the Soul

Wednesday, March 3, 2010

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*Note: I posted this here and here. So, this is really cheesy,but it's soup week at The Gluten Free Homemaker! So sue me - I'm proud of my soup!
My apologies if you're reading this for the second, or perhaps the third time. :)


It's a well known fact that I'm a gourmet wanna-be, but oh so bad, and not in a good way. I toil - sometimes, I slave - once in a while, I plan my meals - weekly, I stick to the chart - rarely.

Being the good, money-saving wife that I am, I searched high and low for something, anything to cook with this humongous bag of potatoes that had been purchased in bulk. What was I thinking? That I had a family of fifteen or something? Anyway, after researching and pondering and thinking about the weather (a snowy day in Atlanta - so much for thoughts of spring!), I decided to make a big pot of potato soup.

Normally when I try something new it's not well received.

Who knew that carbs, cream, and butter would be the miracle drug my family needed? Go figure.

Someone gave me this simple recipe yesterday and it provided that additional shot of warmth that we needed. I whipped up a fruit salad and that's all it took to complete this easy meal.

Homemade Potato Soup

{{I'll try to be accurate with the ingredients. Don't laugh - I'm an eye-baller}}

about 8 or so (maybe more) small russet potatoes
one large onion - diced
4 carrots - diced
2 stalks of celery - diced
olive oil
chicken broth (I used a carton - 32 oz.)
salt and pepper
butter
cream (I used fat free half & half) - about 3/4 cup

In a large stock pot, bring the cubed potatoes to a boil - oh, add water. :)
Reduce heat and simmer until soft.

While that's cooking, saute the onion, celery, and carrots in your olive oil
(in another pan - duh).
Hmm... a little minced garlic might be good at this point, too.
Be sure to salt & pepper the veggies pretty well.
Saute until soft.

Once the potatoes are done, pour off about half of the water.
Add in the chicken broth and the veggies to the potatoes.
Add more pepper and salt to taste.

In a separate saucepan over low heat, warm the fat free half & half and to that,
add about 3 lbs. tbs. of butter to melt.

Once the creamer is warm, add it into the soup mixture. At this point, I took my handy dandy potato masher and mashed some of the potatoes right there in the pot. This way, the soup became more starchy and thick. At least that's what I like to tell myself.

You can garnish with crumbled bacon. I didn't because I hate frying bacon - makes me feel greasy. The family complained, but they got over it and STILL thought I was a rock star.


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Cheerful Little Dance Sequence

Tuesday, March 2, 2010



This is the dance clip from 500 Days of Summer. Have you seen it? It's a cute, feel-good movie - a chick flick - definitely an indy type, artsy movie, which I happen to love. Jessie tried to convince her dad that guys would like it and he inadvertantly listened from another room. At the end he walked through and said, "oh yeah, it's not a chick flick." lol

Anyway, enjoy the clip.

I put Jessie back on her full dose of Lyrica AGAIN because her headaches have been coming back a little. Pretty spotty and I'm practically certain they have nothing to do with the reduction of her dosage. But at any rate, I put her back on until things level - which should be, hmm... in about 6 - 8 years when she graduates from college. :)

Have a great day.

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Gluten-Free Chicken with White Wine Sauce

Saturday, February 27, 2010

This is such a simple recipe. But one of our favorite standbys that everyone loves. I thought I'd share it with you. The recipe originates from the South Beach Diet book. I've tweaked it to add in our favorites. If you don't want to add the white wine, just substitute the wine with additional broth.



Easy Chicken with White Wine Sauce

boneless skinless chicken breasts
salt & pepper to taste
olive oil
3/4 cup dry white wine
about 1/2 cup gluten-free chicken broth
1-2 cloves of minced garlic
1 thinly sliced onion
sliced baby portabello mushrooms
5 (or so) grape tomatoes

Between two sheets of waxed paper, pound out the chicken to about 1/2"
Salt and pepper each side. Heat skillet to medium and add olive oil.
Once hot, add chicken and brown on each side. Remove to plate and cover to keep warm.

In drippings, add onion and saute until soft. Add garlic and mushrooms.
Saute a few more minutes making sure the garlic doesn't overcook.
Add the wine and scrape the bits from the bottom of the pan.
Add the chicken and drippings back to the sauce.
Cut the cherry tomatoes in half and add to the sauce. Bring to a boil.
Reduce heat, cover and allow to simmer for a few minutes to cook the chicken through.

I served this last night with mashed potatoes and *roasted asparagus.

*Roasted Asparagus (or any other veggie)
salt, pepper, olive oil.
Toss to coat the vegetable and roast in a shallow pan at 400 degrees until done.
Try it with carrots. YUM! It brings out a whole new sweetness.

Enjoy!! :)

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A Neurologist, a Pup, and a Mall

Thursday, February 18, 2010


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{{Jes and Sophie}}

This morning we had our regular appointment with the neurologist which went well. I've never been crazy about this fella, but Jes really liked the physician's assistant who, let's face it, saw us more than the doctor. This time we learned that the P.A. we liked has moved on to Mercer to teach. We met another P.A. and Jes wasn't quite as happy which kinda made me happy. Now I can begin to look for another neurologist.

How did the appointment go? Good. Fine. See you again in 3 months. That'll be $30.00. Tootles. And we were sent on our merry way.

The one GOOD thing about about this particular neurologist is that his office is near a nice mall in Atlanta. So, every time we go we plan for lunch out and a little window shopping. We hit our all time favorite, "A" number one store, Anthropologie.

We got a little creative here with the letters and spelled our Jessie's initials - backward - which happens to be PBJ. It's stuck with many of her friends and that's now one of her nicknames.

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Have you every been to Anthropologie? It's expensive, but dreamy and inspiring. If you're not able to go in person, go via the internet.

Have a wonderful weekend.

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Love

Sunday, February 14, 2010


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love is the condition in which the happiness of another person is essential to your own. ~Robert Heinlein

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The Video

Saturday, February 13, 2010

Incredible inspiration...

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Featured Bloggers

Wednesday, February 10, 2010


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A little while back I decided to regularly feature bloggers I've "met". Not exactly sure what happened, but as with many of my good intentions, that thought got lost in my addled brain. Since more attention is being paid to organization these days, I may actually write this thought down and hope it hangs around. At any rate, let's begin.

If you haven't met Sue, from Learning To Live With CFS then you have truly missed out on a delightful writer. Sue has had CFS since 2002. Add to that Lyme and Orthostatic Intolerance AND two boys who also have CFS and OI. It's a wonder she has the time to write. Sue was the first person I met online and is, by far, the most informative, helpful, and encouraging friend a girl can have.

On the celiac front, I'll introduce Shauna and Danny from Gluten Free Girl and the Chef. Not only is this blog visual candy for the eyes, but she's a terrific gluten free chef. Even if you don't have celiac, you will enjoy hearing her stories and viewing the glorious photos. Go ahead and visit. You will NOT regret.

Okay, time to settle in with a cup of tea and meander.



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Here's What We Did

Monday, February 8, 2010

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. :)

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{This is Jessie balancing a plate of roasted peanuts on
Oreo, the sleeping, practically catatonic cat.}

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{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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Precariously Close

Tuesday, February 2, 2010


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Open mouth, insert foot. It seems that every time I speak as if things are changing, I'm proven wrong. Well, maybe - maybe not. I'm still extremely hopeful.

At any rate, Jes began to have the random, quick, and instantaneous stabbing pains in her head last week. About one a day for a few days. Then a few days ago she complained of a migraine, took two of her mega migraine pills and it quickly went away. The next night, she had a headache which turned into a migraine. She took more mega migraine pills and it went away.

For mom here, this is usually red flag central. I know that these are warning signs and nit-pick every issue that could be causing it with no answers. The last time we went to the hospital, the doc told us not to wait three days hoping it'll go away, just come in. And once again, here we are with a "not quite all the time migraine" waiting to see what will happen. Last night I was certain we'd be in the ER today, but Jes woke up okay and begged me to wait.

I'm such a schlep.

*Note: I know this has nothing to do with reducing her Lyrica because it began prior to the reduction. As a precaution, I've kept her on her regular dosage until this passes. And what is it that they say? This too shall pass.

The picture is one my son took and sent to me from Virginia. This is his view. Nice, huh? I think he's ready for spring though. :)

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Happy 17th Baby Girl!

Thursday, January 28, 2010


Today, on your 17th birthday.
A day we thought would never come.

Alas, a day we thought we'd never survive to see...

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I was certain, after carrying you for nine months, that life wouldn't be boring. My first pregnancy was so easy and quiet, but not you! You kicked and screamed whilst still in the womb! Oh yes, we always knew that it would be you, and not the sweet Hermit, who would be the nail in our coffin, the signer of the old person's home commitment form.

We salute you...

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the only baby who could work a onesie. You,
oh giver of endless grief

holder of the title of loudest screaming banshee,

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lover of apple jammies and

current resident of the nastiest bedroom.

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You, oh chewer of books, lover of all things ironic, beacon of hope.

Happy 17th

We love you. :)


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Creamy Gluten-Free Broccoli Soup

Tuesday, January 26, 2010


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Jessie continues to do well. She didn't miss a beat after returning from Virginia and was practically non-stop this past weekend. I know that statistically adolescents have a higher recovery rate from CFS so we're holding our breath and hoping that her condition continues to improve.

Her daily does of Lyrica will be reduced by half beginning tomorrow. I'll be sure to keep everyone posted as we progress.

On to a yummy topic!

I used this Broccoli Soup recipe from Foodnetwork.com once before and it was a success. We'll be having it again tonight. It's easy and delicious. Of course, I substitute the all purpose flour with gluten-free and use gluten-free chicken broth. My tweaks also include changing the cream to fat-free half & half, adding an extra carrot, and this time I'm going to sneak a handful of spinach into the mixture. Hey, it's already green and whatever it takes to get the healthy foods in, right? I also don't add the croutons. We just add a little shredded cheese.

Now, I just wish I had one of those immersion blenders. It's on my wish list. As it stands, I gradually puree the soup in my blender, saving a small portion (maybe 1/5) chunky. If you use the blender, be sure to only fill the blender halfway because the heat will cause pressure and, well, you would be in for a mell-of-a-hess, if you know what I mean. POW!

*Image from foodnetwork.com

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The Good, The Bad, and The...

Friday, January 22, 2010

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{ Diet Killer }

The Good: I found out that the cake last night was originally from Jessie's most beloved Williams-Sonoma Mastering Cakes, Fillings, & Frostings. I've cursed that book ever since Santa brought it to her several years ago - well before the celiac episode. Anyway, it's called Orange Chiffon cake and, yes, it is delicious.

Jessie went to the mall with a friend this evening and my plan is to divide the cursedly high-calorie cake and stash it in the freezer - a.k.a. never-never land.

The Bad: I held her down, pried, tickled, and practically beat the kid. Do you know what she told me? She winged the recipe from the seat of her pants. Apparently, she'll need to bake it again to determine the actual substitutions. Egad. Anyway, she substituted the flour with white and brown rice flour, tapioca flour, and xanthum gum. I was in the other room and did not see a thing. So what I promised, I cannot deliver until a later date.

I have to say that this is without a doubt, her most successful transformation to date. The cake tastes EXACTLY like it did when it was full to the brim of glutenous bad stuff. Even today, it was still moist and light. It has a great spongy texture. Yeah, I'll get the recipe and pass it on - some - day. :(

Sorry the photo is terrible. I had to take it with my camera phone. Jessie seems to have lost the camera charger at the moment. Sometimes don't you just want to...? Oh, never mind.

Have a great Friday night.

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Traveling & Orange Cakes

Thursday, January 21, 2010

We traveled from last Thursday through Tuesday of this week, and as always, it took me two days to recover from the trip. Jessie, oddly enough, is doing just fine. She's not sleeping very well. But as most of you sufferers know, it's par for the course. Tonight, if I have to literally hold her down and pry her mouth open, I'm going to make her take some melatonin to get the ball rolling.


Anyway, tomorrow I'm going to post a recipe for a cake that Jes made late this afternoon. I've only tasted it but I'm fairly certain that it's going to ruin any semblance of a diet we had going here.

If you haven't been keeping up with the blog from the beginning, you may not be aware that Jes is a natural baker. I now believe that baking is a God-given talent that some people are just born with. Me - not so much. I'm sure that the talent for cooking skipped a generation and landed on her.

ANYWAY, she adapted a recipe for an orange pound cake. Actually, I don't think it's a pound cake. It's lighter than a pound cake, but not as light as angel food. (told you I'm not a baker). She adapted it to be gluten-free, which isn't easy. Truly, it's utterly delicious. First, I'll have to pin her down and get her to pencil her substitutions into the Williams-Sonoma cookbook, THEN I'll happily pass it along to our gluten-free friends.

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Chicken Satay Stir Fry

Wednesday, January 13, 2010


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

Tuesday, January 12, 2010

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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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Tired With Tea

Thursday, January 7, 2010

Strange title, huh?


Just thought I'd offer my favorite winter-time tea recipe for you to enjoy. My dad made it when I was a little girl and I've loved it ever since. Everybody's heard of Russian Tea, but this is the real deal, in my humble opinion.

Oh, I was a little off with my optimism. Jessie has required a massive amount of sleep over the past couple of days. But other than being entirely too ornery, she seems to be plugging along. :)


Russian Tea
23 oz. unsweetened pineapple juice
23 oz. unsweetened orange juice
8 oz. lemon juice
8 cups strongly brewed unsweetened tea
1 cup of sugar (to taste)
14 whole cloves
2 sticks of cinnamon

I like to heat it in a large pot on the stove to make the entire house smell delicious.

Enjoy!


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Back From the Holidays AND a Road Trip

Tuesday, January 5, 2010

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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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My Pledge

Saturday, January 2, 2010

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We won't even call this a New Year's Resolution because those never come true. Or is it that we never keep them? Whatever... this is not that.

I've not blogged here lately which is sad because my Living Chronically connections are probably the most important to me. So, here is my pledge.

(I'll bet you already know what it is.)

I'm going to be a better, more attentive writer.

Actually the reason I haven't written is that Jessie has been doing well - in the health department. Otherwise she's been a pill. But if you wanted to hear about that side of my dear daughter, you'd have to mosey over to my griping blog. Head's up - she's not called Jessie in that blog. Her initials are S.A. and that's all I'm saying about that.

In the spirit of the season, I'm posting our new favorite GLUTEN-FREE candy. It alone can be blamed for the additional 2-3 pounds I've packed on over the past two weeks.

Gluten-Free Chocolate Mounds of Healthy Stuff

1 Bag Dark Chocolate Chips
1 Bag Milk Chocolate Chips (because we can't be too healthy)
1 Bag Dried Cherries
1 Bag Whole Almonds

Toast the almonds then set aside to cool. Melt the chocolate in a double boiler, then add the almonds and cherries. Line at least two cookie sheets with waxed paper and mound about one tablespoon of the stuff onto waxed paper. (We used two spoons to make it easier.)

Immediately put the cookie sheets in the refrigerator to cool.

Next, try to control yourself.


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