Tired With Tea

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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Testimony from Annette Whittemore - XMRV Retrovirus

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Survival

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

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

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ABC News - XMRV Retrovirus

Click on the link below to view the new video.

Does a Virus Cause Chronic Fatigue?

Shared via AddThis

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Meet My New Acquaintances...

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.

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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?

Shared via AddThis

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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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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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Two Weeks In - It Could be a Record

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..."

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

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.

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