ME/CFS: What It Feels Like

Saturday, August 29, 2009

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

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Girl's Weekend & Celiac BRAT Diet Creativity

Friday, August 28, 2009

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

Tuesday, August 25, 2009

Jessie made it daily for an entire two weeks.

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

Monday, August 24, 2009

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

Saturday, August 22, 2009

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!


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

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...


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

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.




Desserts & Cookies:




Gluten-Free Products That Don't Suck

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

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.

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