Inspiring Story of One Woman Stricken with CFIDS

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

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ABC News on Chronic Fatigue

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

Feeling Chronically Fatigued?

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Road Trips and Gluten-Free Cookies

Gluten Free Chocolate Fudge Cookies from RecipeZaar.com.

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

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

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

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Blogging for National Invisible Chronic Illness Awareness Week

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

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

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Boys and School and Shots

Interesting title, isn't it?

First, the boys:

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

School:

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

Now, the shots:

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

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Calling All Gluten-Free Gourmets!

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

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

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

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

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New Week, New Season, Fresh New Start

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

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

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

Have a great week.

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Odd Quote of the Day

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

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

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

I had to laugh.

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Life Changes and Adjustments

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.

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The One Thing About CFS

“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.

1. 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.”
   
   
2. 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.”
   
   
3. 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.”
   
   
4. 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.”
   
   
5. 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.”
   
   
6. 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.”
   
   
7. 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.”
   
   
8. CFS is very isolating.
   “I am often lonely and alone.”
   “Life moves on without me.”
   “Nobody understands what I’m going through.”
   
   
9. 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.”
   
   
10. 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! :)

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