living chronically

An Update

2010-10-14T14:10:00.000-07:00

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.

is it possible?

2010-05-30T05:21:00.000-07:00

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.

you had me at hello

2010-04-25T07:46:00.000-07:00

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.

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

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.

just in case you needed a laugh

2010-04-18T08:14:00.000-07:00

Hope your Sunday is beautiful.

Here We Are

2010-04-06T05:08:00.000-07:00

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. :)

Hello Friends

2010-03-22T04:58:00.000-07:00

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?

Well Said - My Favorite Word...

2010-03-10T09:59:00.000-08:00

Well said.

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

Check Out

2010-03-09T09:32:00.000-08:00

{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.

Gluten-Free Potato Soup for the Soul

2010-03-03T16:09:00.000-08:00

*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.

Cheerful Little Dance Sequence

2010-03-02T04:26:00.000-08:00

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.

Gluten-Free Chicken with White Wine Sauce

2010-02-27T05:20:00.001-08:00

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!! :)

A Neurologist, a Pup, and a Mall

2010-02-18T15:21:00.000-08:00

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.

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.

Love

2010-02-14T07:18:00.000-08:00

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

The Video

2010-02-13T07:21:00.001-08:00

Incredible inspiration...

Featured Bloggers

2010-02-10T04:47:00.000-08:00

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.

Here's What We Did

2010-02-08T04:21:00.000-08:00

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! :)

Precariously Close

2010-02-02T10:14:00.000-08:00

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. :)

Happy 17th Baby Girl!

2010-01-28T03:37:00.000-08:00

Today, on your 17th birthday.

A day we thought would never come.

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

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...

the only baby who could work a onesie. You,

oh giver of endless grief

holder of the title of loudest screaming banshee,

lover of apple jammies and

current resident of the nastiest bedroom.

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

Happy 17th

We love you. :)

Creamy Gluten-Free Broccoli Soup

2010-01-26T10:14:00.000-08:00

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

The Good, The Bad, and The...

2010-01-22T16:54:00.000-08:00

{ 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.

Traveling & Orange Cakes

2010-01-21T16:50:00.000-08:00

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.

Chicken Satay Stir Fry

2010-01-13T04:24:00.000-08:00

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!

Weaning

2010-01-12T11:10:00.000-08:00

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.

Tired With Tea

2010-01-07T15:11:00.000-08:00

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!

Back From the Holidays AND a Road Trip

2010-01-05T12:39:00.000-08:00

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?

My Pledge

2010-01-02T16:28:00.000-08:00

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.

Another Brief Hello

2009-12-07T17:12:00.000-08:00

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?

A Tiny Hello

2009-11-17T18:58:00.000-08:00

Hello...

I hopped over to Living Chronically to catch up with my favorite blogs and noticed that I haven't posted since the broccoli & potato soup incident! That was on November 11th.

Just a little hello. Jessie continues to do well. She had a super busy week last week and needed to rest up all weekend long. But she bounced right back. I'm holding my breath, being cautious, and enjoying the good health she's experiencing.

Wesley's birthday is tomorrow (he's TWENTY and I'm feeling old). As usual, we will have a special dinner and everyone will have to suffer through my rendition of "the day you were born."

Then on Thursday we're heading out again. I'm excited to be house and pet sitting for a friend in Virginia and staying in her house for five days while she and her family are away! It'll be a FREE VACATION! The best kind. Yippee!!

I hope everyone is doing well and if I don't get the chance to post again, have a wonderful Thanksgiving.

Virtual {{{hugs}}}

Gluten-Free Broccoli & Potato Soup

2009-11-11T04:31:00.000-08:00

In my humble opinion, soup is a win/win choice. Consider the facts.

It's usually cheap, filling, easy to make, serious comfort food, and finally, soup is a one-dish-wonder. I can't tell you how many variations I've come up with over the years.

Last night we had gluten-free broccoli & potato soup. I would guess that it took about an hour to make, start to finish. It was a winner (except for the constant steady stream of "food critique of the day" that my family has yet to put a stop to. See the other blog for my family gripes).

Let's get started:

Gluten-Free Broccoli & Potato Soup

You will need:

3 tbs. butter

1-2 tbs. olive oil

1 onion, diced

3 potatoes, diced

(Add a few diced carrots if you'd like)

chopped broccoli (fresh or frozen)

salt & pepper to taste

3 tbs. gf all-purpose flour (we use bob's red mill)

4 cups of gf chicken or vegetable broth

1/2 cup cream (either light cream or half & half)

Directions:

Combine butter & olive oil in stock pot over medium heat.

Add about 2/3 of the broccoli (keep the rest to add after pureeing if you like a few chunks), and all of the onion, carrot, potatoes, salt and pepper. Saute for, hmm... about 10 minutes. Add the flour and cook for 1 minute, until the flour reaches a blonde color. Add stock and bring to boil.

Simmer uncovered until the vegetables are tender, about 10-15 minutes. Pour in cream. With a blender, puree about half of the soup. Add salt and pepper, to taste and ENJOY!

Of course, you may want to add a little shredded cheddar to top it off. :)

Need An End-Of-The-Week Brainless Laugh?

2009-11-06T17:19:00.000-08:00

Okay, it's the end of the week. I've been driving for 4.5 hours ending in ATLANTA hellish traffic. Need a laugh, or maybe just a little Friday giggle? Watch this. It's too cute. Keep a CLOSE eye on the kitty. Oh, and have a good weekend.

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

2009-11-04T14:15:00.000-08:00

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!

Why Not a Little Bit of Silly for Halloween?

2009-10-31T14:54:00.000-07:00

After my serious video in the last post, I thought I'd add a funny one in honor of Halloween. Who doesn't remember Batman doing the batman dance? Enjoy! Oh, and Happy Halloween!

Testimony from Annette Whittemore - XMRV Retrovirus

2009-10-30T04:38:00.000-07:00

I Choose Hope

2009-10-29T17:14:00.000-07:00

Once you choose hope, anything is possible.

~Christopher Reeve

Delicious Gluten-Free Brownies

2009-10-27T13:03:00.000-07:00

I walk in from the pouring rain and errand-running. My ~~small but ever so efficient~~ mind is completely absorbed with the thought of having that much deserved afternoon cup of coffee. Imagine my delight when, upon entering the kitchen, I smell an aroma so mouthwatering, so chocolatey.

What is it, you ask? Why it's Betty Crocker Gluten-Free Brownies, still fresh from the oven! Yes dear, you heard it right - Betty Crocker - good old Betty has gone gluten-free. (I know it's been around for some months now, but we're a little slow here on the uptake.)

What did I do? Well, after ~~practically knocking Jessie over~~ hugging Jessie gleefully, I first ran to my coffee, then cut a large piece of brownie and proceeded to enjoy my fifteen minutes.

Where is my artistically created photo of the brownies? Alas, by the time my ~~small but ever so efficient~~ mind grasped the thought of blogging about this culinary delight, the brownies had been consumed. As a result, I'm submitting a picture from Amazon.com.

Looking Up

2009-10-26T13:34:00.000-07:00

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.

Dr. Oz...CFS...Inaccuracies?...Read On

2009-10-25T12:26:00.000-07:00

I'm posting a link to Sue Jackson's blog, Learning to Live with CFS. Sue posted her response to a recent Dr. Oz segment about chronic fatigue - interesting stuff. Read up and offer your opinion.

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

2009-10-23T04:29:00.001-07:00

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.

X-Associated Neuroimmune Disease

2009-10-21T11:30:00.001-07:00

Check out this interesting article in the NY Times

Looks like we could have a new name. What do you think of it?

A bit more legit than the last one, wouldn't you say?

Survival

2009-10-20T04:21:00.000-07:00

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.

ABC News - XMRV Retrovirus

2009-10-19T17:13:00.000-07:00

Click on the link below to view the new video.

Does a Virus Cause Chronic Fatigue?

Shared via AddThis

IIItttt'ssss Friendship Friday!!

2009-10-16T11:26:00.000-07:00

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.

Gluten-Free Roasted Red Pepper Soup

2009-10-15T05:57:00.000-07:00

I was recently lucky enough to acquire this recipe from my friend, Dennis, who is an exceptional gardener and cook. Now Dennis uses his home grown red peppers as well as his own crushed red pepper for this recipe. However, since I have the keen ability to kill even a Chia Pet, I successfully created the recipe using roasted red peppers from a jar and dried, crushed red pepper. It works just as well. As with many great cooks, please note that his recipe is not exact.

This delicious soup is super healthy, delicious, and perfect for the upcoming season.

Roasted Red Pepper Soup

roasted red peppers (I used 3 jars)

basil (to taste)

Vegetable or Chicken Broth (I used GF chicken broth - about 3/4 of a box)

2 - 15 oz. cans of whole tomatoes

5-6 cloves of garlic

3 tsp. balsamic vinegar

1-2 tsp. olive oil

1 large onion - roughly chopped

crushed red pepper

Bake the onion, tomatoes, peppers, garlic, basil, vinegar & olive oil in a roasting pan at 350 for approximately 45 minutes. Blend until smooth. In a dutch oven, combine the roasted vegetable mixture, broth to desired consistancy, and crushed red pepper to taste (I used maybe 1 tsp.) until heated through.

Enjoy!

What Were You Doing?

2009-10-13T05:40:00.001-07:00

It was the first weekend of November, 2005. Jessie had recently finished fall soccer. At 12, she was becoming a much better player - aggressively chasing and maneuvering the ball. She was having a great time with weekly horseback riding lessons and occasional mountain biking excursions with her dad and brother.

On Friday, Jeff and I went away for the weekend and Jessie eagerly went to spend a few days with her best friend, Sarah. On Saturday, we got the call that Jes had become sick. Could it be the flu or mono? Another friend was at home sick with mono and Jessie remembered that they had recently shared a water bottle at school. Assuming that she had mono, we kept her at home. The following week, we took her to the doctor, where she tested negative for mono.

Two weeks later, her friend was well and back in school. Jessie's fever had finally subsided, but the headaches and flu-like symptoms were relentless. Two months later, confined to her bed or sofa and beginning physical therapy, we were told that Jessie had tentatively been diagnosed with something called Chronic Fatigue Immune Dysfunction Syndrome. We were so happy to have a diagnosis! We knew so little then. We had no idea that on that first weekend of November, the course of our daughter's life would be changed.

For more information and to learn how you can help,

visit SolveCFS.org.

Meet My New Acquaintances...

2009-10-10T04:36:00.000-07:00

The internet, a source of so many bad influences, can also be a source of friendship and support for so many dealing with unusual chronic illnesses.

In an attempt to connect even further, I'm starting something new. When I find new blogs I will share their link with you. Here are two of the most recent I've found:

Laura Louise, a 26 year old young lady from Vancouver, at Hope Help Health

and

Robyn, a 23 year old student, at "How are you?" and Other Silly Questions

Drop in for a visit. I'm sure they would love the company.

Finally...See She Wasn't Making it Up!

2009-10-09T14:15:00.000-07:00

We have promising news in the study of CFS. The news will authenticate what millions of patients with Chronic Fatigue Immune Dysfunction Syndrome have been claiming for years. It's an infectious disease. A seemingly simple claim, but so very important to people dealing with CFS.

More importantly, the discovery of the relationship between CFS and the XMRV Retrovirus will, hopefully, lead to more research and an eventual treatment for this debilitating disease.

For a better explanation:

Scientific American

The New York Times

The National Cancer Institute

Encouraging to say the least!

Delicious Autumn

2009-10-07T13:34:00.000-07:00

Delicious autumn! My very soul is wedded to it, and if I were a bird I would fly about the earth seeking the successive autumns.

~George Eliot

A Young Girl In Love

2009-10-06T04:49:00.000-07:00

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.

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

2009-10-05T06:34:00.000-07:00

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?

Inspiring Story of One Woman Stricken with CFIDS

2009-09-28T07:13:00.000-07:00

Laurel eloquently delivers her testimony of her experience with Chronic Fatigue. Her story, her writing, her hope is an inspiration. Her blog is Dreams At Stake

ABC News on Chronic Fatigue

2009-09-28T06:58:00.000-07:00

It's encouraging to see this is in the news to make folks more aware and, hopefully, understanding.

Feeling Chronically Fatigued?

Shared via AddThis

Road Trips and Gluten-Free Cookies

2009-09-22T11:29:00.000-07:00

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!

Blogging for National Invisible Chronic Illness Awareness Week

2009-09-15T14:15:00.000-07:00

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.

Boys and School and Shots

2009-09-11T04:40:00.000-07:00

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?

Calling All Gluten-Free Gourmets!

2009-09-10T04:54:00.000-07:00

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.)

New Week, New Season, Fresh New Start

2009-09-08T04:20:00.000-07:00

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.

Odd Quote of the Day

2009-09-05T07:31:00.000-07:00

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.

Life Changes and Adjustments

2009-09-03T06:56:00.000-07:00

Jessie wrote this on her facebook yesterday:

"Make a wish, take a chance, make a change, and breakaway."

It was a gentle nod to our new adventure. After a lot of thought, prayer, and discussion, we've decided to pull Jessie out of school. This is not a bad thing. It's a good thing, and here's why.

Top reasons to pull out:

Less stress/no pressure
The ability to take AP and Honors classes which, because of her absences, she wasn't allowed to do in public school
Flexible schedule
Time to focus on building her strength and stamina
Travel options :)
She will now have a life, time with friends rather than resting while not in school.
She was in school only 2 weeks, now out for 2.5 weeks - bad start.

This is an extremely shortened version devoid of explanations. Consider yourself lucky. I can be quite long-winded in listing my justifications.

We are headed over to the school today to officially withdraw and turn in books. We've been researching online schools and will probably settle on Keystone since it's so well known and highly rated. In addition, it offers tons of honors and AP classes.

Jessie told me yesterday that once the final decision was made, she felt like a huge weight was lifted from her shoulders. She's already talked to friends about attending youth groups and dances - something she couldn't do before.

Wish Jes luck. Wish mommy luck. Wish daddy luck. Wish Wes luck.

The One Thing About CFS

2009-09-02T10:34:00.000-07:00

“What is the one thing you’d like your family/friends to really understand about CFS?”

One thousand seven hundred eighty-four patients with CFIDS were asked this question on a survey conducted by CFIDS Association of America. This was question #22.

Jessie read the top ten answers and agreed 100 percent.

Here are the top 10 answers. To read the article, click here.

CFS is real.
“I’m not making this up.”
“My symptoms are very real even though you can’t see them.”
“I am sick with a real disease and I’m doing the best I can.”
It is very debilitating and disabling.
“CFS is as disabling as HIV, cancer and MS.”
“Staying at home is not a ‘fun vacation from reality.’”
“CFS is absolutely life-altering.”
The fatigue is very intense.
“It’s more than being tired.”
“My energy is very limited.”
“I understand you’re tired, but it’s not the same as CFS.”
Looks can be deceiving.
“I don’t look as bad as I feel inside.”
“Even when I look good, I feel awful.”
“Just because I look okay now, know that I’ll pay for it later.”
CFS is unpredictable.
“I don’t know from one day to the next how I’ll feel.”
“I have no control over how I feel.”
“I need to be flexible in planning things.”
It has nothing to do with being lazy.
“I wish I could accomplish more each day than I can.”
“Even simple things are often beyond my ability.”
“I’m not trying to get out of doing something when I say I can’t.”
Words don’t do CFS justice.
“There’s no way to accurately describe how bad I feel.”
“I still hurt as badly 20 years later as I did the first day I got sick.”
“Even when I don’t talk about it, I still feel sick.”
CFS is very isolating.
“I am often lonely and alone.”
“Life moves on without me.”
“Nobody understands what I’m going through.”
Your understanding is important.
“I am so grateful for my family’s support.”
“I am very lucky to have their understanding. It makes life bearable.”
“I still need quality life experiences and to be involved.”
CFS is not a choice.
“I don’t want to be this sick.”
“I miss the person I used to be.”
“It’s so sad to miss out on so many things in life.”

*MAJOR ANNOUNCEMENT COMING TOMORROW! :)

ME/CFS: What It Feels Like

2009-08-29T14:04:00.000-07:00

Take a few minutes (well actually 9:18) to view this video. Thanks.

Video provided by sleepydust.net

Girl's Weekend & Celiac BRAT Diet Creativity

2009-08-28T08:17:00.000-07:00

Jessie is feeling better, but it's happening at a snail's pace, so she's still on the B.R.A.T. diet, celiac style. I honestly didn't think one sixteen year old girl could complain so much about rice, potatoes, ginger ale, bananas, jello, and Powerade. Sheesh. I do feel for her though.

She's sick of feeling puny and gave me a weak laugh this morning when I said we could have a girl's weekend. Why the laugh, you ask? Because a normal girl's weekend for us calls for ordering out from our favorite restaurants, pigging out on junk food, and watching movies. The watching movies part will definitely come true, but ordering out and junk food, I don't think so.

Just how creative can you get with the B.R.A.T. diet? I suggested adding sliced bananas to her lime jello - OOOOOH! Gives you shivers of excitement, doesn't it?

Another thing. Maybe I'm a little picky. Maybe I'm right. Maybe I'm wrong. But tell me, wouldn't you expect ginger ale to actually contain ginger? Is that too much to ask? Walking the soda aisle in Walmart, I read the back of every ginger ale and found only one which had ginger. And, this is sad, it had a little balloon on the front of the bottle proudly proclaiming that this product contains REAL ginger. I'm reduced to thinking that maybe ginger has a complicated scientific name and I'm just too stupid to know what it is. Am I missing something here?

Oh well. We can always paint our nails.

Two Weeks In - It Could be a Record

2009-08-25T16:37:00.000-07:00

Jessie made it daily for an entire two weeks.

Disclaimer:

Are you picking up on the sarcasm? Prepare yourself for a heavy dose. Please note that I love my family desperately. However, sarcastic humor seems to be my vodka these days. The family accepts it with open arms and you should too.

My daughter is a walking magnet for any stray viruses or bacteria because that's what found her. Needle in a haystack? No, she's more like the pink elephant in the haystack to germs. Being a visual person, I can actually picture evil bacteria stalking my little girl around the halls of the high school. Forget about the kid who never bathes or the one who eats dirt. Jessie's around. She's MUCH better.

Moving along...

Apparently what we thought was a CFIDS "flare" turned out to be a virus. Oh, let me give you a playback. It's better.

Last Monday Jes woke with the killer migraine - the kind that gives you a bad feeling in the pit of your stomach because you recognize it as the type that likes to hang around, like a bad penny, or seriously bad luck. Anyway, and I'm ashamed to admit this, once Thursday morning rolled around and the poor girl was still throbbing, we went to the emergency room for the oh so familiar dose of Benadryl, saline and steroids. By afternoon, the headache was gone, Jessie was loopy and sleepy and cranky and, okay, we're turning into the seven dwarves here. You get the picture. She slept it off for a a couple of days and we thought things would be good by Monday morning for school. It's a good thing I don't rely too heavily on expectations because...

Monday morning, bright and early, I check on Jessie. She must have missed her alarm. No, she'd been up vomiting. Oh joy, something new. Okay, I say, it must be some leftover something from the massive dose of medication she'd received in the ER which, I know, really doesn't make a lot of sense. Give me a break, I'm a mom, not a doctor and I'm searching here.

By Tuesday (today) the "incidences" were continuing so we went to the regular doctor who advised that the migraine was possibly triggered by a nasty virus that's been hanging around. The low grade fever on Friday wasn't from the ER visit and the vomiting was the final gift of this fabulous virus. We were given a few doses of something to help with the stomach issues and were told that, hopefully Jessie will be back in school tomorrow. One can only hope.

In the meantime, we have collected the proper paperwork and requested intermittent homebound status again this year. It is a necessary evil as well as a welcome blessing in high school. If a student misses more than seven days, even excused, credit will not be given for the classes taken. Missing seven days or less for us would be a gift from heaven, which I'm not expecting because, remember? Expectations are at an all-time low in this family. :)

What's that song? "We're back in the saddle again..."

Life's Little Pleasures

2009-08-24T11:19:00.001-07:00

We're pretty cheap dates. There, I said it. In our household, a trip to Whole Foods, Sam's Club, or Trader Joe's more or less beats out anything else.

Whole Foods is the bomb when it comes to gluten-free paradise. That's where we were this past Saturday. As soon as we passed the impressive produce section, we came to one of my favorite areas. No, that's not true. I have too many favorite areas, but this one rocks. It's the nuts and granola section. Yes, they have an entire section devoted only to nuts and granola. We immediately saw a huge display of granola made with dried cherries, cranberries, raisins, gf oats and much, much more. That went into the cart. Do you see the "Fresh Ground Nut Butters"? OMG, it's so much fun. I'm like a kid in a candy shop.

And speaking of candy...

We leave the nut section for the chocolates and pastries section. Have I said it's unreal? Unreal. I'm seriously curious about the bacon chocolate, but instead this went into the cart.

It's the Red Fire Bar with Mexican ancho y chipolte chillies. Oh yeah. And then the Gianduja Bar with almonds and caramelized hazelnuts. That was a no-brainer. I got sample sizes for $1.99 each. Worth the splurge, don't you think?

We gazed at the pastry shop and drooled, but refrained because, alas, they had no gluten-free pastries. Shocker.

After that, we experienced the wonders of the remainder of the store. Unfortunately, I don't have any more pictures since Jessie, aka the "stick-in-the-mud camera police" told me we had enough already and I was embarrassing her.

Maybe next time.

Trying Something New

2009-08-22T14:36:00.000-07:00

This blog is a continuation of my Living Chronically blog on Wordpress. I've begun the new blog with duplicate posts beginning August, 2009. To view the older blog and prior posts, just click here!

Why do this? Simply because I'm more familiar with Blogger's platform and it's options, So, we're trying it out for size.

However, I need YOUR help. Please leave a comment with some feedback and be sure to let me know which you prefer.

Oh, and please by all means join so that I won't be the only subscriber. It's quite pitiful.

Thanks for the visit!
~Lori

Sometimes Life Really Sucks, But That's Not The Point

2009-08-22T10:17:00.000-07:00

If you're reading this and you're not particularly religious, then I'm sorry if I offend. However, I am religious and I gain most if not all of my strength from my faith.

Yesterday morning I was having somewhat of a pity party because of stupid migraines and Jessie's attachment to them. I decided to take the old treadmill for a walk, listen to a sermon on my ipod (sick, I know) and try to calm down. It's funny how the sermon always seems to match whatever worries I'm having at the moment.

Long story short, I learned about the importance of being "fishers of men" and that no matter how insignificant we think we are and how crappy our luck is, we are all given that one important job in life. We're set upon a path which, IF our hearts are willing and open, will help others - sometimes even without our knowledge. The lecturer went on to say that most often, it's not a pastor who leads someone else in faith because people expect to hear the lecture from a church leader. It's the people who have made it though terrible situations who will inspire others.

I'm done trying to figure out WHY Jessie was given this lot right now, but it sure is comforting knowing that the way she's handled her situation could be an inspiration to others, maybe even strengthening their faith in the process.

Isn't that a cool thought? It's a small thought, but all the same, pretty cool.

So, what's the point? For me, the point is to not constantly curse a crappy situation (although I'm sure I'll do it from time to time), to make it my goal to stay focused on the positive, inject humor whenever possible (although not today), and pray. :)

What do you do to pull yourself up?

Playing Chronic Illness Roulette (OR) Welcome Back to School...

2009-08-22T10:13:00.000-07:00

I'm going to begin with, "Isn't summer delicious?" No stress, no alarms, no bed times, no parents standing over you ~~screaming at the top of their lungs~~ telling you to get ready for school. The deliciousness of summer ended for us two weeks ago. Yes, I'll admit that, as a parent, I was ready to get the ~~monsters~~ kids out of the house. However, as the end approached I felt an even stronger, familiar ache in the old tummy.

I knew immediately that this deep ache was my all-time, "A" number one enemy, inspiration of all things therapeutic, of all things yoga, and quite frankly, the evening glass~~(es)~~ of wine. Yes, it was (pause for effect) parent of a chronically ill child anxiety.

Now if you're out there, currently perusing this post, you know who you are. No need to fool yourself. In fact, sometimes it's better to go ahead and lay it all out in front of God and anybody else who cares to listen rather than bottling those feelings up deep inside.

Having said that, consider yourself forewarned that the summer has indeed ended and, while I may appear ~~incredibly elated~~ calm on the outside, inside I am a quivering ball of nervous mush.

~~The anti-christ~~ Jessie has been in school for two weeks now and until today has done splendidly. She has been very tired in the evenings, but has been great about resting. This weekend, her boyfriend, ~~Satan himself~~ Nathan, came for a visit. I have to say that it was an ~~enormously stressful~~ terrific weekend. Jes, Nathan, Wes and friends did lots of fun things, interspersed with tons of rest. I think she's had a bit of a flare (CFS term meaning tiny relapse) but it's probably minor and short-lived. I confess that the timing probably wasn't the best for a visit and the blame falls entirely on ~~the stupid kids for planning this~~ me.

Oh well.

Gluten-Free Recipes

2009-08-22T10:10:00.001-07:00

This is a list of recipes we've tried and liked.

*NOTE* Each person has different sensitivities. It is up to you to check the list of ingredients you are adding to verify that it is gluten-free.

Thanks for stopping by and be sure to check back as I add new recipes.

Sauces:

Soups:

Breads:

Southern Cornbread

Desserts & Cookies:

Entrees:

Beverages:

Russian Tea

Gluten-Free Products That Don't Suck

2009-08-22T10:04:00.001-07:00

This page includes lists of gluten-free products we've tried and liked.
Pasta:

Quinoa Corporation's Corn Blend Pasta (a blend of corn and quinoa)
DeBoles Spagetti Style Corn Pasta

Pizza Crust Mix:

Namaste Foods Pizza Crust (it's free of gluten, wheat, soy, nuts, potato, corn, dairy and casein)

Sauces:

San-J Organic Tamari Wheat Free Soy Sauce

Baking Products:

Arrowhead Mills Organic Corn Meal
Bob's Red Mill Gluten Free Whole Grain Rolled Oats
Kroger 33% Reduced Sodium Chicken Broth or
Progresso Chicken Broth
Pamela's Products, Classic Vanilla Cake Mix (We made the pound cake recipe & it was GREAT. Jessie suggested adding in orange zest and maybe a little extract next time to change it up a bit. But even plain, it's good.)

Snacks:

Kind "Nut Delight" Fruit & Nut Bar
MI-DEL GF Chocolate Sandwich Cookies (The cream is a bit sweet, but it's good for making cookies 'n cream milkshakes!)
Betty Crocker Gluten-Free Brownies YUM!!! Super moist.

More to come!

Our History

2009-08-22T09:43:00.001-07:00

The Short Version of Our History:

This is our story of living day to day with chronic illness. Our 16 year old daughter has had Chronic Fatigue Immune Dysfunction Syndrome since November 2005, Celiac Disease since April 2008, and was diagnosed with Neurally Mediated Hypotension in February 2009.

The Longer Version of Our History:
This blog is the story of my daughter, Jessica, our family, and a daily chronicle of our experience living and coping with chronic illness. From time to time my posts will be angry, but I'm hoping that they will each contain a healthy dose of humor and hope. You simply can't survive life without throwing in a little self-depreciating humor on a regular basis.

First things first. We need a bit of history. Sorry, this will be long, but necessary.

Our family consists of me (Lori), hubby and dad (Jeff), older son and brother (Wes) and finally daughter and sister (Jessie). We will all pop in from time to time.

Now the story. Jessie was your typical kid. She loves sports, participating in everything from mountain biking and horseback riding to soccer and softball. She played flute in the school band, and was (and still is) an extremely sociable, straight "A" student.

The first weekend of November, 2005 Jessie, then 12 years old, became sick with what we were sure was mono. A friend had mono at the same time and Jes had been exposed. The difference was that her friend recovered and our daughter didn't. She ended up testing negative for mono - twice.

By December we were having all of the blood tests, MRIs, etc. with no answers. Jessie, bedridden, became de-conditioned and began physical therapy. By the grace of God, we had a young doctor who recognized that Jessie could possibly have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). We were sent to a pediatric neurologist who, after much trial and error, found the right combination of medication to help control many of Jessie's symptoms. Her initial symptoms were exhaustion, insomnia, migraines, muscle aches, and joint pain.

During the first seven months of being sick, Jessie was either confined to her bed or our sofa. (She ruined our sofa by creating a permanent indentation and we joked that when she got better we would have a sofa-burning party!) Jes was assigned a homebound tutor through the school system and finished 7th grade at home. By June of 2006, Jessie slowly built up the strength to get out of the house a bit and she was eventually able to go back to school in the fall of 2006. She would have relapses many times during the next two years requiring the use homebound tutoring. While she can walk, get out, and attend school, Jessie still isn't able to run or participate in sports at all.

In February of 2008, as a ninth grader, Jessie became ill again, but this time with new symptoms. Over the course of the next 2 months it was discovered through an endoscopy that she also has celiac disease. Simply put, she can no longer have any form of gluten (no bread, pastries, pizza, you get the picture).

In October of 2008, the migraines returned. They were constant and debilitating. We had two trips to the emergency room to break the cycle, relapses of CFIDS, ending with advise from her Atlanta neurologist to get her to a psychiatrist because the migraines continued to return with no explanation. Therefore, she must be depressed. Our gut feeling was that we weren't dealing with depression. We felt that something was out of sync with her system or medication and with the recent diagnosis of celiac, Jessie was due for a complete overhaul.

Out of desperation, we turned to the internet and found the Hunter Hopkins Clinic in Charlotte, North Carolina. We had our initial appointment in February, 2008 and were there for 5 hours, four of those being a one-on-one interview with the doctor. While there, Jessie had the tilt table test and passed out after only five minutes. This resulted in a diagnosis of Neurally Mediated Hypotension.

That is the MUCH abreviated (believe it or not) history of Jessie's illness. If you've stayed with our story for this long, I must say that you are a real trooper and will be provided with stories and updates on a regular basis.

*October, 2009 Update*