is it possible?

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

and speaking of being medicated...

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

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

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

Stay happy and full of hope. Until next time.

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Here We Are

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

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

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

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

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Check Out

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

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

I do have a quick little update:

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

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

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

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

Hope you're having a splendid introduction to spring.

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Precariously Close

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

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

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

I'm such a schlep.

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

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

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The Good, The Bad, and The...

{ Diet Killer }

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

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

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

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

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

Have a great Friday night.

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Another Brief Hello

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

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

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

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

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

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

Moving along...

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

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

Soy, Ketchup, and Sesame Marinade

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

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

Enjoy!

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I Choose Hope

Once you choose hope, anything is possible.

~Christopher Reeve

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

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.

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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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What Were You Doing?

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.

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

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!

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

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

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

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

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

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

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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?

Shared via AddThis

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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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