An Update

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.

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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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A Tiny Hello

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}}}

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

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.

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IIItttt'ssss Friendship Friday!!

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.

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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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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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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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ME/CFS: What It Feels Like

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

Video provided by sleepydust.net

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