Monthly Archives: April 2009

Day 15 – Sleep Studies, Medication, and New Cars

Day 15 of all-out gluten consumption.  Jessie has not had a reaction yet.  When she was first diagnosed, her symptoms were daily vomiting (multiple times) and stomach cramps.  I am surprised that nothing has happened.  We will go for more testing in a couple of weeks.

The sleep study was just loads of fun.  Jessie was excited to try something new.  So far, this ranks pretty high on the list of interesting experiences for her – along with drinking the chalky liquid and watching it go through her body when she had the upper GI test.  Anyway, we got there at 9:00 p.m. Sunday night and it took a little over an hour to attach the wires.  She had six sprouting from different areas on her skull, two next to her eyes, one under her chin and one under her mouth.  She also had the oxygen thingie hooked up to her nose to see if her breathing stopped.  Moving down, she had two wires for her heart, two bands around her stomach and chest and finally two wires on each leg.  By the time they were done she looked like the bride of Frankenstein and she was proud of it too!  (We took pictures with her camera phone, but she won’t give them to me. 600+ friends on Facebook can have a look-see, but not dear old mom.)

Before the appointment, the physician told us both that the room is similar to a hotel room with two comfortable beds and a full bath.  I thought, “Cool!  A night out!”  Boy, was I naive.  Jessie had the cool bed and I had a small faux leather (slippery) futon in the corner.  We got to sleep around 11:15 and the nurse had to come in twice during the night to adjust the oxygen indicator thing because Jessie kept brushing it away from her nose.  The nurse woke us both promptly at 6:00 a.m.  Needless to say, it wasn’t exactly a night at the Ritz, or Motel 6, for that matter.  It was, however, clean and the staff was extremely nice, so I cease my whining at this point.  We will get the results in two weeks.

The “sleep doctor” called me after our initial consultation with an idea.  He advised that sometimes Pamelor can begin to exacerbate the symptoms that are being treated (insomnia) and we could try switching to Wellbutrin.  He called Jessie’s pediatrician on Monday with the suggestion.  I called Dr. Black (Hunter Hopkins Center) to check this out and she gave the okay. AGHH – the idea of playing with medication is scary.  Experience with this proves that it takes a week to see what is going to happen and IF it works a little, then it takes longer to get the dosage right.  At this point, however, I’m happy that we’ve found a good team of doctors who seem to be genuinely interested in getting to the core of the problem.  So, we willingly go along with what they advise.

The one thing that does worry me is that we are fast approaching the last month of school and Jessie has a ton of catching up in front of her.  She can’t afford to be any worse off than she already is.  However, she isn’t sleeping well, so we have to give it a try. Please say a little prayer for her that she makes it through this time without any trouble.

I have a “504” meeting at school this afternoon, but other than that, I will be test-driving a few cars which, oddly enough, isn’t as much fun as it was when I was in my 20’s!  As a mother of two, all I can think about is the stock market and college tuition.  Kind of takes the “zoom zoom and shiny new things” out of the equation.

That’s it!  Have a good day.

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The Officer Said, “Ma’am, I Think Your Car Is Jinxed.”

First, a brief Jessie Update:  Day 11 and still no sign of a gluten reaction.  The girl continues to have a little gluten party for herself. 

Now for the REAL topic of the day:

Ever feel like something in your life is jinxed?  I’m a religious person and, in general, we aren’t supposed to believe in those sorts of things.  My thoughts, however, are beginning to stray.

I love my little Toyota Rav4.  We purchased it new in 2002, opting for a stick shift because it would be more fun for me.  The car has not let me down.  

Unfortunately, signs of things to come began a couple of years ago when Jeff was involved in an accident on a one-lane dirt road, far into the woods of Virginia.  He damaged my baby!  I forgave him and we quickly had it repaired.  

One year later, Jeff is taking my car to the airport at dusk one morning to catch a flight.  Unfortunately, some deer must have been heading to the airport as well because the two collided.  See Exhibit “A” below:

 

Exhibit "A", Jeff Meets a Deer

Exhibit "A", Jeff Meets a Deer

Fast forward to this past November.  This is something we rarely discuss at the dinner table or any other time as it’s still a very sensitive subject.  Jessie had just gotten her learners permit and, well, let’s just say that she had a little trouble shifting and steering at the same time.  See exhibit “B” below:

 

Exhibit "B", Jessie Notices the Garage a Bit Too Late

Exhibit "B", Jessie Notices the Garage a Bit Too Late

I was in the passenger seat when Exhibit “B” occurred.  It happened in slow motion, literally, and a stream of words poured from my mouth that I didn’t even knew existed.  

Reasoning: We mulled over the situation and decided that since we have two teenagers, one being a 19 year old male, we would pay out-of-pocket for the repairs.  No need to make our insurance go sky high.  We also made the decision that, as smart as Jessie is, she really isn’t cut out for the multi-tasking role of keeping the car on the road and not hitting anything.  “Why repair the car now?” we ask,  “She’ll probably hit something else before she gets the hang of it anyway.”  (This is heartless, but true) By the way, Jeff has a company car that the kids aren’t allowed to drive – smart move on the company’s part. 

Fast forward to last Friday.  I pick Jessie up from school and head to Target.  We are sitting at the stop light, on the highway exit ramp when suddenly we’re thrown forward.  See exhibit “C” below:

 

Exhibit "C", The Straw That Broke The Camel's Back

Exhibit "C", The Straw That Broke The Camel's Back

I simply CAN NOT believe this has happened.  My cute little car now has only one good side, excluding the roof.  Anyway, as one officer is writing the report, his partner walks around my car and proceeds to say, “Ma’am, I think your car is jinxed.”  I laugh and he looks at me, dead serious, and says, “I’m not kidding.  That stuff happens, ya know.”

 

My Poor Little Baby

My Poor Little Baby

 

 

Last Saturday Jeff and I spent the day car shopping.  What about Jessie?  She will be seen driving the oldest, cheapest, most beat up Volvo wagon that we can find.

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Day 8 – No Reaction

If you look for a reaction similar to what Jessie had experienced last year, then she hasn’t had any since beginning to consume gluten products eight days ago.  She says that her stomach has gurgled a couple of times, but then again, so has mine.  So that’s no indication.

Believe it or not, both doctors, Jessie’s pediatrician and the auto-immune specialist from North Carolina, spoke yesterday afternoon. It was definitely a first for us so it gave us a little charge.  Jessie was prescribed something to help her sleep for a very short term (10 days worth, if needed) and now we are being sent to a sleep center.  Our appointment for a consultation is tomorrow morning.  Jessie was really happy about this one (insert sarcastic tone.)  Sheesh, this will make five doctors.

My attitude is a little on the low side these days.  It could be Jessie, or it could be that I’ve had drywall guys and painters (who don’t speak english) in my house every day since Monday.  Today, they will leave behind a layer of drywall dust.  Or it could be that someone rear-ended my car on Friday.  Now my car has three bad sides.  Sheesh again.  I need to remind myself of blessings, of which there are many.

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Day 6 – Gluten Frenzy Continues

We are currently on day six of our gluten consuming adventure/experiment.  Jessie is taking the attitude that she probably does have Celiac Disease and is using this opportunity to eat as much bread, pasta, etc. as she can.  So far, believe it or not, she has had absolutely no reaction.  I am withholding excitement because, well, I’ve just learned to withhold excitement AND I’ve found out that while most celiacs have immediate reactions, it’s possible to not react for 5-7 days or to be asymptomatic.  So, I think we both prefer to remain a bit skeptical.

At any rate, Jessie is, at this moment reheating leftovers from Olive Garden, including the garlic breadsticks!  Yes, the girl is having a little party for herself.  

Unfortunately, the insomnia returned about two weeks ago.  I’ve got a call in to the pediatrician.  If we get incredibly lucky and a miracle occurs tomorrow, Ms. Pediatrician and Ms. Specialist in North Carolina will have a little telephone pow-wow to confer on the matter before coming up with a solution/prescription.  Could that actually happen?  It sure would be nice!  

Jessie has tried melatonin, tylenol pm and does pilates to relax not to mention the nortriplyline and Lyrica she’s already taking that should assist with sleep.  At least it did until about 7 months ago.  Nothing is helping now.  It seems like the bane of her existance these past 7 months has been migraines, which were taken care of with the diagnosis and treatment for hypotension, and insomnia.  The insomnia is a stubborn little nuisance that doesn’t want to go away.

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Day 2 – The Gluten Frenzy

We’ve made it to day two of our experiment. Yesterday, Jessie stuck with only the bottom half of a bagel with no side effects.  She said that she had a little stomach gurgling last night, but that’s it.  Today, she’s becoming quite bold.  She ate the TOP half of the Panera bagel for breakfast and is currently having a couple of small pieces of a Totinos cheese pizza for lunch.  I may have to draw the line here on gluten for today as the prospects do frighten me a bit.  She’s like a vampire who catches the scent of blood (can you tell I’m reading Twilight?)  Once Jessie gets her first taste of real bread, she becomes crazed. 

I’m curious about how long your system can possibly delay a response.  Google has told me nothing on the topic.  I know that you can feel side effects almost immediately, but can there be a delay?  Hmm…the question of the day.  I guess we could find out, huh?

Updates to follow.  Stay tuned, if you dare.

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Spring Break and Gluten

Spring break is over and we are slowly returning to our “normal” lifestyle.  I spent a few days visiting my mom in North Carolina and upon returning on Monday, was faced with a very dirty house, a huge pile of dirty laundry, something vaguely but not quite resembling banana pudding in the refrigerator, bills, a doctor’s appointment this morning and did I mention a huge pile of laundry?

First, the week passed with no signs of protest from Jessie concerning her father’s trip to Virginia.  I was amazed and quite honestly a bit frightened.  When things go too smoothly, something new is ALWAYS lurking around the corner.  Thankfully, it was a good week off.

We went to visit our brand new Georgia gastroenterologist this morning for a little meet and greet.  (You know you’re seeing too many doctors when your child asks which part of her body we will be discussing today.)  We are entering our favorite zone, “Experiment Land” yet again.  Jessie was ALL OVER this one.  Amazingly, she has already forgotten our little experiment with her medication last month.  Kids – how soon they forget.

Anyway, the doctor looked over her previous endoscopy and bloodwork and noted that the Virginia doctor had doubts as to whether the diagnosis should be Celiac Disease.  The biopsy was positive and the bloodwork was iffy.  He said that if there is any question, the only way to be sure is to consume gluten and see what happens.  If her symptoms return, well, you get the picture.  If not, then Jessie gives him a little blood in a month and he runs the tests to see what they show.  I side with the doctor on this reasoning.  This is a lifelong diagnosis, so you’d better be pretty darned certain that you are on the money before giving up an entire food group.

Moving along.  First, Jessie literally told this little doctor that she loved him.  Her mouth proceeded to water so much that she could hardly form her words.  He quickly added that by tomorrow, she may do a complete 180 on her opinion of him. Next, as soon as he left the room, she decided what she has missed more than anything else.  It was a no-brainer – Panera Bread.  Think about it.  If a person has, possibly, a one-shot chance to have gluten for maybe the very last time in her life, she should get what she desires.  

Thanks to the trusty Garmin we’ve lovingly named Myrtle, Jessie and I located the nearest Panera and headed 7 miles in the opposite direction of the doctor’s office, which was 10 miles from our house to find the coveted cinnamon crunch bagels.  We anxiously arrive at Panera only to find that they had SOLD OUT of the darned things.  Not to be out done, Myrtle promptly located the next Panera Bread which, may I add, is 8 more miles south.  This time a little light bulb lit up and we called to see that they had what we wanted.  They did!  We drove literally into the city of Atlanta (which is a BEAR) to get these stupid bagels – excuse me – delicious bagels.  Jessie was then terrified to eat one, so she smelled it all the way home where she carefully toasted it and sliced it like a pizza.  That was about five hours ago and we haven’t seen anything ugly yet.  We can only hope and pray.  If nothing happens, I have three more with her name on them.

Anyway, that just about sums it up, except for the banana pudding.  I don’t know what happened.  All I can say is that was unrecognizable, the pudding itself never set up and was an odd brown color.  It went bye-bye.

Have a nice evening!

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FYI Wisdom to Teens

I will be SO glad when tomorrow is over.  I know, don’t wish your life away.  That is a good philosophy, but I will be SO GLAD when tomorrow is over.  

The struggle goes on between my hubby, Jeff, aka Tower of Strength, and my daughter, Jess, aka Little Tower of Strength.  Wes and I are caught somewhere in the middle, hiding out as often as possible and remaining completely neutral.  If you read my last post, I noted that Jeff will be heading to Virginia tomorrow.  Jess desparately wants to go, but is just now beginning to feel better and has shown poor judgement in what should be the typical CFIDS life.  You know, do a little, rest a bit, do a little more, rest a bit, go to bed at a reasonable hour, don’t throw caution and rationality out the window – that kind of thing.

Jeff actually began to rethink his position during the weekend – momentarily.  It didn’t last, though, because Jess continued to cry every day and write letters to him every night.  At a certain point it just becomes a battle of the will.  Needless to say, Jessie has pestered her dad to death and now there is NO WAY he will change his mind because, as most parents know, it will give her the impression that she can continue this begging and pleading and pestering and writing of even more begging letters behavior for any future occasions during her time in our home.  

Deep down she’s a pretty reasonable kid.  So AFTER tomorrow, when the wailing settles down, I will explain to her relationship lesson 101.  Make your case respectfully, then sit back and be the model child from that moment on.  That is your only chance that a parent will relent and change his or her mind.  

So, having said that, if you are a religious person, pray that our family will survive the mental anguish during the next 48 hours.  If you are not a religious person, throw a few wishes in my direction if you have a sec.  By the way, we’re not entirely evil parents.  The whole family will be heading to Virginia in exactly one month. 

Health Update:  Jessie is continuing to feel better!  She is walking on the treadmill and doing pilates every day.  She and her dad even went for a very short bike ride yesterday afternoon.

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Looking Up and Ahead

 

Roanoke Girls, Jes in the middle

Roanoke Girls, Jes in the middle

The week ended on a good note.  Jes went to school yesterday for two classes and felt good afterward.  She says that she can tell that her body is pulling out of this relapse because when she gets tired, it’s more of a normal tired and she feels better after resting up a bit.  I sure hope that she’s right.  It sure was a long seven month relapse.

We’re heading into spring break now.  I’m not sure what next week will hold for us.  Jeff has to travel back to our “hometown” of Roanoke, Virginia for a few days and Jessie has been hitting us with a raging campaign to go along to see her friends.  We said earlier (in December) that she wouldn’t get another trip until summer because she went during Christmas break and felt horrible after using little common sense and throwing all caution to the wind.  Honestly, she’s 16.  How much common sense is she supposed to have when she gets to see her peeps for the first time in four months?  Obviously, I’m sitting on the fence with this one.  I’m the weak one who hates saying no.  Jeff on the other hand is the tower of strength with this one and is staying firm in his decision.  The next several days will be interesting as Jessie continues to run a pretty strong campaign!  So far she’s written two full page letters to her dad making every conceivable promise under the sun.  I just sit back with this one out of my hands and watch to see if he caves.

I understand his point fully and will support his decision.  As for Jessie, I sympathize with her.  She’s been miserable sick for all these months and wants to go back “home”.  She’s on spring break, they will be in school during the day and she can sleep in and rest.  See, I am truly the weak one in the family.  There’s always one.  The kids know who to appeal to.

Oh well, we’ll see how it progresses.

Sophie at the Studio

Sophie at the Studio

I’ve put a picture of our dog, Sophie, standing outside of my studio at our home in Virginia.  The studio was in the top part of a detached garage on the side of a hill. Our house was like a cabin in the mountains.  Actually, it WAS a cabin in the mountains.  I loved it dearly.  Not fancy, but unique.

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It’s Blue Jean Friday

That’s what we like to say around the house.  My husband gets excited about Blue Jean Friday.  Although, if I look a little deeper it’s probably excitement about the impending weekend rather than the fact that he gets to wear his jeans.  In addition, the sun is supposed to show up for Blue Jean Friday. YEAH!

Yesterday was a good day.  Jessie went to school around mid-day, then stayed afterward to play catch-up.  In all, she was there from about 1:30 until 4:45 – a good day indeed.  The best thing is that she didn’t feel the exhaustion afterward.  In fact, she was in her room doing pilates when I went to bed last night.

We’ll see how she fares upon waking, but the plan is to head back into school this morning for a few hours. Next week is spring break and I’m thinking that, if we’re lucky, the following week will get us back to semi-normal/normal.  Maybe the medicine is completely into her system and working properly.  Whew.  It’s been a LONG seven months.  Gosh, I didn’t realize that this bout has actually lasted SEVEN months. I’m talking seven months for just this phase.  She’s actually been sick since 2005.

This whole sickness continues to boggle the mind.  What have we learned from this experience?  Does she have a myriad of illnesses including CFIDS, Celiac, and Orthostatic Intolerance?  Is she pulling out of CFIDS and moving into something else?  Did she ever really have CFIDS?  My answer is, of course she did.  The onset was too textbook.  Even the specialist, who sticks to the diagnosis of clinical CFIDS wonders if the majority of her problems are from Celiac. The symptoms are extremely similar.  The new pediatrician questions whether or NOT she has Celiac.  We will go to an gastroenterologist this month and finally put that question to rest.  The cardiologist believes that CFIDS is an overall name for an underlying illness.  I tend to side a little with him.  I think it’s something that will one day be figured out by a researcher and make complete sense.  While I’m fantasizing, I’ll add that it will have a cure.  Hey it’s my brain and my thought process, I can add anything I want to.  

Once again, my constant questions rear their ugly head.  But isn’t it the questioning that moves us forward?  I like to think so.

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Money and Thunderstorms

We need a little of this in our part of the woods.

I’m still chipper!  I’ll say that first before it looks like I’m whining.

Today is rainy and thundering.  We SO need the rain, but I am quite sick of it.  Gray does absolutely nothing for me.  Also, I had to have, what I now believe is, my jinxed car repaired yesterday to the tune of over $1000!  GRRR.  I tried to look on the bright side and think it’s still cheaper replacing the stupid thing.  

Yesterday, Jes had grand plans of going in to school around mid-day, taking a test, going to class, taking another test after that class, etc.  She went as far as to get a shower, then couldn’t muster the energy, so she stayed home and continued to play catch-up with school work.

Today, we’re hoping for better things.  I think it’s a good sign that, at least, there are positive plans each day.  Things don’t always pan out, but it’s still looking up.  It’ll be an interesting balancing act today trying to pick up my (cursed) auto, go to the dentist, get Jes to school at some point, then pick her up, while trying to run a few errands.

Anyone have a little spare sunshine and color to send this way?

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