ME/CFS: What It Feels Like

The One Thing About CFS

Life Changes and Adjustments

Hop over and be sure to subscribe while you’re there.

Yes, we have moved to our new address.

Hop over and join us.  BE SURE to SUBSCRIBE because we can’t keep double-posting.  The pace is killing us.

We have two new posts titled:

• Two Weeks, It Could be a Record and
• Girl’s Weekend & Celiac B.R.A.T. Diet Creativity

Go ahead now.  It’s time to mosey over.

No, not literally.  It may wear you out and frankly, you won’t get anywhere.

Okay friends, strangers I hope will become friends, and anybody else who’s interested.  I’m trying to transition our Living Chronically blog over to it’s new and more “Lori friendly” home.  After you’ve made that all important leap of faith, I’d love for you to join in.  Please click on “The Committed” button to join in and I’ll be able to jump back and visit you some time as well!  If, for some unknown reason, you aren’t comfy doing that, you can click on “The Alternative” button.  I and my other blogger friends won’t have the pleasure of seeing your pretty profile on my blog.  But, hey, whatever floats your boat.  The important thing here is to jump.

Ready?  Here’s where you make the  JUMP See you there!

P.S. Please be kind.  It’s a work in progress and beauty sometimes takes it’s own sweet time.

I am more familiar with Blogger’s platform and the options it offers to it’s blogger children.  So, my experiment is to create another blog titled LivingChronically.blogspot.com (instead of WordPress).  Hop over for a visit.  The history, food lists, and menus are the same.

Just a little experiment.  Which do you prefer?

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?

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.

She repeats, "Gluten is my enemy. Gluten is my enemy..."

We received the official call today.  Stomach Doc says, “Tell Jessie that the party’s over.”

In anticipation of the expected call, the kitchen has been restocked with gluten free pasta, Bob’s Red Mill flour, etc.  We’re not trying to fool anyone here.  We knew it would end.  C’est la vie.

BUT…  Refusing to give up hope, accepting that the party is, in fact, over is just not right in our book!  Hail to the party!  The party shall NEVER be over, we feverishly cry.

So, we will happily collect the gluten-free supplies for the pantry, FOREVER attempting to create that perfect gluten-free cupcake.  Party over?  We think not!  Who needs stinky old gluten anyway?  (Well, mom here does, from time to time.  But we’ll just keep that as our little secret, won’t we?)

Okay, so we’ve glutted ourselves on gluten, massive amounts of gluten, for the past three months.  I am quite sure that the family has collectively gained a minimum of twelve pounds.

Jessie’s endoscopy was this past Thursday.  It went well.  She didn’t feel half as crappy as she did the first time.  In fact, the little twit  did so well that I wasn’t able to gain one ounce of loopy behavior, confession, or seriously embarrassing photos to hold over her head.  THAT’S how well she did.

We all, including the doc, believe that she has celiac, even without visible symptoms.  Stomach Doc said he’d probably call us with the biopsy results tomorrow.  When we whined that we expected the results to take at least another week, he winked and said he’d give us until Tuesday.  :)

Back to the topic…gluten.  This is just a sampling of what Jessie has done to her tummy recently:  Panera Bread (one baker’s dozen of the cinnamon crunch bagels), pizza, pasta, fried chicken, did I say pizza?… um…oh yes.  LATE last night she made cupcakes.  She’s made cookies and waffles.  If I had more time and more space, I’d list more.  It’s true.  She’s been a partying fool.

Can’t say I blame her.  Would you?

Summer is passing quickly for us.  We have traveled, spent time with friends, played and rested.  To go one step further, we’ve had a roof over our heads and food on the table, so complaining would be a sin.  Forgive me because I’m about to sin.

School actually begins on August 3rd!!!  Clearly the people down here in Georgia are craving year round school.  The concept is nice during the year, but to go back while it’s still summer – well, that’s just a crime in my book.

We have now corralled Jessie and brought her back home for the two weeks of summer remaining.  She’s had fun, running mostly on adrenaline, I think.  Now she’s tired and grouchy. Yes, that’s what mom is given on a silver platter after traipsing all over the east coast this summer.  Ah, the rewards of parenthood.

Jessie is eating as much gluten as she can possibly get her grubby little hands on.  Her endoscopy is scheduled for next Thursday morning.  I really think it will be positive for Celiac Disease.  I’m wondering if, by that time, Jes will have consumed so much bread that she really won’t want any more.  It’s looking as if that may be her goal.

Goodbye until next time.  Enjoy yourself!  Life’s too brief NOT to.

Sweet Summertime

I hope you are all having a wonderful summer.  It does seem to be flying by for us!  I wrote a check today and wrote June instead of July.  At least I got the year right!

Brief update:

Jes has had a great summer.  She’s been able to relax and enjoy life for the past month.  In fact, the entire family has had a great summer so far.

We went to the gastroenterologist and had a little pow-wow about the new labs which were positive for Celiac.  As many of you know, we were shocked.  I later read that many celiacs show no signs of the illness, which makes no sense to me.  But that’s a topic for another day.

The doctor advised that, since Jessie is showing no symptoms, she should continue eating gluten (she’s thrilled) through the end of July, thereby giving her three full months.  We will then have another endoscopy to get a biopsy of her intestine to see if it is damaged.

I can’t remember the actual numbers and how they work, but while her antibody numbers in the labs were positive for celiac, they were not very high.  I think on one, the normal range was 0-3 and Jessie’s was a nine.  The doctor had a patient earlier that day who’s number was 175.  So, with that, the whole diagnosis remains in question.  Does she have celiac, but a mild case?  Can she eat gluten with little damage to her intestine?  The endoscopy will answer that question and give us a final answer.

So, that’s it.  It seems that the longer we deal with chronic illnesses, the more we learn that nothing is rational or normal, even the abnormal!

With that said, I bid you all a fond farewell until our next update.  Have an absolutely splendid July!