Tag Archives: health

New Celiac & CFIDS/CFS/ME Posts

We’ve moved to a new location.  Below are the most recent posts:

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.

Leave a comment

Filed under Daily Chronicle, Living Chronically has MOVED!! Follow us.

New Celiac & CFIDS Posts, New Location…

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:

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

Leave a comment

Filed under Living Chronically has MOVED!! Follow us.

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

6013_1177819438112_1006919220_554728_3756367_n_2_3

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?

2 Comments

Filed under Daily Chronicle

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

IMG_9705

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.

5 Comments

Filed under Daily Chronicle

We’re Told That The Party’s Over. Wanna Bet?…

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

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?)

Leave a comment

Filed under Daily Chronicle

Tales of a Celiac Cheater…

6013_1177795877523_1006919220_554592_958813_n

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?

3 Comments

Filed under Daily Chronicle

Celiac Update

Sweet Summertime

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!

2 Comments

Filed under Daily Chronicle

She’s a Celiac!


Official town crier, "I don't heart gluten!  But I LOVE tuna!"

Official town crier, "I don't heart gluten! But I LOVE tuna!"

Where do I begin?

Well, you know (and if you don’t, read up) that the gastroenterologist advised Jessie to try out the whole gluten thing a couple of months ago.  The girl has seriously had a party for herself for the past eight weeks or so, consuming every gluten-laden food in sight, with absolutely no side effects.  As directed by Mr. Doctor, we went to have the labs done earlier this week to see what’s going on.

My opinion?  I told  Jes that it was a formality.  She clearly doesn’t have celiac.  She said she has no side effects but had a nagging feeling.  (Okay at this point you know the ending, but I’ll go on)  Doctor’s office called us this morning to say that her levels were up and it clearly indicated that she does have celiac.  I nearly fell over.

I marched upstairs to deliver the good and bad news to Jessie.  Good news?  Starbucks now has gluten-free cake proudly displayed for all celiacs to enjoy.  Bad news?  She’ll be eating it.

The nurse also said that, while Jessie’s levels were clearly indicative of celiac disease, she wasn’t the worst case scenario. The T3 test showed that her level was 9 while normal is 0-3.  Nurse advised that she had someone in the office yesterday whose level was 175. So, that helped to put things into perspective.  Apparently there are LEVELS to this disease.

We’ll be going in to see the doctor on July 1st and will discuss whether it’s safe to cheat from time to time when you have no symptoms or if she has to refrain from the gluten 100% from here on out.

So there you have it.  I’ve all but abandoned my “Gluten-Free Foods That Don’t Suck” section.  Guess I’ll be chugging along again!

I hope you are all having a wonderful summer.  We certainly are!  The school pressures are gone, THANK GOD!  I’m going to brag a bit, but hey, I am a mother.  Jessie pulled straight A’s.  It’s a good thing.  Now I have to deal with the school this summer and beg for the right classes next year.  In the words of Ms. O’Hara, “I’ll think about that tomorrow.”

4 Comments

Filed under Daily Chronicle

The Slacker

Who me???

Who me???

Who me?  My daughter?  My son?  Hubby? (Not hubby)  I guess it is to be somewhat allowed during the summer so I’ll take responsibility.  Here’s a brief update.

After the trip last week, Jes was quite exhausted for about 2-3 days.  (Heck, we all were)  When she couldn’t take my yapping and complaining about her unbelievably disgusting bedroom, she perked up and did a two day major clean resulting in two full garbage bags full of junk.  How do teenagers do that?  Anyway, she’s better now and has even spent time at the neighborhood pool “networking” for baby-sitting jobs.

We went to the neurologist last week.  I SO  immensely enjoyed telling the doctor that, against his suggestion to take Jessie to a hospital to see a psychiatrist (because he couldn’t find the cause of the migraines) and through stubbornness and research we found that the migraines actually came from Neurally Mediated Hypotension – not depression.  HA!  I love it when things like that happen.  The physician’s assistant was thrilled that we found the culprit.  The doctor didn’t have much to say.  Maybe because he was WRONG.  Uh-oh.  Is my attitude showing?  Need to check that.  Seriously, I’m not debating that depression can result from having a chonic illness.  Everyone knows that it does.  However, if I’ve learned one thing in the past several years, it’s to trust your instinct and be an advocate!  That gut feeling is always worth investigating.

So, summer has begun.  Things are still a little busy, but a good busy.  We’re taking road trips to visit friends – always fun.

Have a great week.

3 Comments

Filed under Daily Chronicle

One More Day!

Just one more day, one more exam and summer vacation will officially begin at 12:15 tomorrow.  WooHoo!  Even more good news, Jes was able to finish everything – thanks to a few sleepless nights – and is doing fine. 

We ARE heading out for Virginia and West Virginia tomorrow.  Jeff and I will get to enjoy the Greenbrier Resort this weekend while Wes will visit friends in North Carolina and Jes will be in her beloved Virginia with friends.  Because of a Friday exam, Jes and I will be driving separately which means we get to hang around our old “hometown” until Tuesday instead of rushing back with Jeff on Sunday.  

After our weekend, we’ll head back home to tackle all of the doctors appointments that I rescheduled for the week after school. We go to the neurologist on Wednesday, then the cardiologist and finally the gastroenterologist.  Jessie will be getting the blood tests testing for celiac next week so we’ll get the results from that when we go to the GI doctor.  Jessie still thinks that he will say she has celiac disease even though she hasn’t had any reaction at all.  I think she’s just bracing for bad news, but I honestly don’t see how that can happen.  We’ll see.

Hope everyone’s “end-of-school” weeks are over and you’re enjoying your summer vacation.

2 Comments

Filed under Daily Chronicle