Tag Archives: CFIDS/ME

Celiac, CFS, Hypotension – To Keep Up, Jump…

friends

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.

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

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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.

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No Rhyme Or Reason

One of the most frustrating things about having CFIDS is that, as hard as you try, sometimes there is absolutely no pattern to good or bad days.  A relapse can come from nowhere for no apparent reason.  I guess that’s what has happened this week with Jessie.

Jessie has experienced insomnia now for several weeks.  In addition, she has also had to deal with a two – three day headache as well as the general flu-like symptoms.  Attending school simply did not happen this week. 

I will admit that I’m cheating and wavering on my previous decision to try something new.  She started on the Wellbutrin SR on Wednesday and immediately felt jittery like she was on steroids, plus the insomnia got worse.  I read up on it and know that this can be a side effect that may or may not ease once her body is used to the medication.  This could take days or weeks.  Jessie was only on Wellbutrin for two days and off of her Pamelor for the same amount of time.  I decided this morning to put her back on the Pamelor and just give her the entire dose at night rather than splitting it as we’d done before.  (We’ve done this in the past and I know it’s okay.  Otherwise, I wouldn’t dare do something like that without checking with the doctor first.) I’m hoping that taking the full dose of Pamelor at night will help her with sleep.

My reasoning is that, as stupid as this may sound, school has got to be finished within the month and the thought of playing with medication right now doesn’t make sense.  The sad fact is that a solution to the problem of insomnia simply isn’t instantaneous. Getting caught up with school assignments would be difficult at this point even if Jessie was a completely healthy teenager. I don’t want her to have to deal with side effects of new medications at this time of year.    I am going to call the doctor and tell them what I’ve done, then deal with that as it comes.  If they have a better suggestion, I’m open.  Let’s hope we make it through the next four weeks!

Have a good weekend.

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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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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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