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overwhelmed.

train ride
I can't sleep. It's 4:30am; been awake since 2:45 :(



Yesterday I was *crying* to the credits song on Signing Time! vol. 2; the song is called "The Good", By Rachel Coleman:

"It was you and me and the whole world right before us
I couldn’t wait to start
I saw you and dreams just like everyone before us
We thought we knew what we got

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
No, maybe we won’t find easy
But, baby, we’ve found the good!

It was you and me and a new world right before us
I was so scared to start
I saw you and dreams just like everyone before us
But how did they move so far?

And then one day I thought it slipped away
And I looked to my hands to hold you
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
Maybe we won’t find easy
But, baby, we’ve found the good!"

Why was I crying? I've been overwhelmed lately with thoughts about the possibility of Soren having Celiac disease (gluten intolerance). He's been sick a LOT and he has dropped in his weight from the 60th% range to the 30th% since his first birthday which was when we introduced wheat into his diet. My maternal grandmother has Celiac so we decided to wait to intorduce the wheat/gluten with both kids. It was certainly more difficult with Soren as he couldn't have any of the cracker-type snacks his sister was having but it wasn't for all that long. So he had blood-work doen (regular 16mo) and his pediatrician added the allergy panel to see if there was an allergy that was contributing to him being sick all the time.

The blood-work came back normal, no allergies, the only thing that was off was that he's slightly anemic (by just 1 point). This immediately stuck a chord with me as my grandmother suffers severe anemia due to the celiac disease and has to have blood transfusions every 4-6 weeks at this point because of it. So I asked the pediatrician about it and she seemed not concerned. She attributes his weight to just how active he is and felt the amenia was likely due tohim being sick at the time of the test and thus his immune system being on full-charge. She said she would have expected the cel-size to be smaller if it were celiac; but given the family history, the wieght loss (lack of gain), AND the minor anemia we could retest ina month for anemia and iron deficiency. So I left it at that and tried to put it out of my mind.

Yeah, puting it out of my mind, simply hasn't happened. For a week or so I ignored it completely. Then I asked a friend whom I know has a son with Celiac about how she *knew* and found out his only symptom prior to becoming seriously ill (blood in his stools) was anemia; and got some good advice about trusting my instincts. Still; for some reason I tried to put it out of my mind, it wasn't time to retest yet and he was actually having a spell of GOOD HEALTH.

But then I mentioned it to my mom. At which she did not seem surprised but instead said she's been hearing more and more about how they are linking all sorts of issues with this disease; including neurological issues and that maybe just possibly *my* issues (epilepsy) could have been due to celiac. *WHAT?!?!?!?*

But wouldn't I have been diagnosed with it as a child? Well, my grandma wasn't diagnosed until she was in her 30s. But I had always attributed that fact to her being diagnosed in the 1950s; a time when no one knew anything about this condition.

Now it was time to do some actual research. What did I find? These are possible symptoms of Celiac. A personw ith the condition may have only one or many of the following:

 Recurring bloating, gas, or abdominal pain - Yes!
 Chronic diarrhea or constipation or both - constipation, Yes!
 Unexplained weight loss or weight gain - not really
 Pale, foul-smelling stool - not that I've noticed
 Unexplained anemia - as a child I was on iron supplements for years due to anemia
 Bone or joint pain - not really
 Behavior changes/depression/irritability - at several points in my life, I've had depression; usually attributed it to life happenings though
 Vitamin K Deficiency - not that I know of
 Fatigue, weakness or lack of energy - fatigue, definitely, and not just starting with the pregnancy and mom business
 Delayed growth or onset of puberty - nope
 Failure to thrive (in infants) - nope
 Missed menstrual periods - oh my word, YES YES YES...completely irregular; in fact had an appt. scheduled due to this
 Infertility male and female - nope
 Spontaneous miscarriages - nope
 Canker sores inside the mouth - YES, especially when stressed but often just there
 Tooth discoloration or loss of enamel - I had noticed recently my front teeth being brown in the middle...I brush regular but thought maybe it was from drinking too much tea; I'm not a coffee drinker and I don't even do tea every day though.

The list is shocking to me. And looking at it and answering yes to a good number of the symptoms made me realize that this may be a real possibility/reality for me. I can't necessarily see where Soren fits in with the list, except the anemia, but then Iremind myself that the Celiac site says that 1 in 133 people has this condition and that 97% of the people with it go undiagnosed. Also that it is definitely a genetic disorder.

I let that sit a day. Then figured; well I have an appointment with my gyno on Friday (for the missed periods...I've had just 2 since December, which was the first after having Soren, I'm no longer breastfeeding, so I wanted to make sure there wasn't anything to worry about). I can ask her about it and she could do the lab-work to test for the disease as there is a simple blood-test they can do; along with further testing if necessary (small intestine biopsy).

But then I thought I should contact my regular doc about the test as its not really gyno-related. So I did that on Thursday; leaving a message to find out if I need to come in first or if he'll order the test and I can come in for a follow-up and the results. Didn't get a return call (though it wasn't like left an urgent message).

Went to the gyno on Friday; it was a major fiasco becasue they just change offices and there's an outside office handling their phones and appointments during the transition and that office scheduled me for a "well-Woman exam" (pap) instead of a gyno visit with an issue. Apparently the well-women doesn't require insurance approval if you do it ONCE per year, but the latter DOES and since I just had my well-woman in September, insurance would not cover this visit unless they got the approval first (UGH!!!!!!). They were really appoligetic and wanted to reschedule me but I decided I'd rather just pay for the appointment and SPEAK to the doctor than reschedule. So I did. What do I have a FLEX account for anyway, and after major battles with insurance several years ago; I no longer put my health into their hands, its only money afterall.

Anyway, my gyno agreed that she thinks the celiac probably is a good fit. Her only other concern gynelogically given the skicpped periods would be thyroid but she had had that tested back in September because I was coplaining of being overly fatigued and it was normal. She would have ordered the test for me but given the insurance issue it would not have been covered and since it really isn't gyno-based felt bad sending me back to the primary care with "nothing" but its what she had to do.

So now I need to call my primary back on Monday and find out if I should just make an appointment or if he will give me the test without the appointment first.

And given all of this, I think rather than just retesting for anemia/iron deficiecy for Soren I'll have him tested for the celiac; I might even have Sorsha tested as well; I mean realistically if I have to go gluten-free; the whole household is going to have to be gluten free.

Back to why I was crying....I realized that I was holding in all of my concerns and feeling like my world was crashing down around me. And Rachel's song helped me to realize that I *will* find "The Good". We had not watched that DVD in a good long while. I don't think we've ever shown it to Soren, the last time Sorsha watched it was probably when she was still 2 years old. Yet that's what got picked yesterday; I don't think it was coincidence.

The insomnia is my brain going on and on about the possibilty of this being reality and then *how* would I go gluten free...all the foods I'd have to toss from my cupboards, how I would handle taking the kids to school, bible study, anywhere they serve snacks, how my life would have to change and its just overwhelming. I want to let go of it while there's nothing I can do about it and I'm hoping that writing this all out will help me do that.

I haven't read back through this and I'm SURE there are many spelling/grammar errors as I've just been spilling it out as its has come to me; please forgive! Back to sleep I hope to go now (hopefully).

Comments

( 1 comment — Leave a comment )
ghostkat
Jun. 8th, 2009 02:40 am (UTC)
{{{{hugs}}}} JacJac. At the very least, if it IS Celiac.. at least you'd have an answer to the many things you've listed. One of my classmates has Celiac's, she is our class president, and she is a great girl. She seems to handle it well even with us being out in Kansas 'n all.

I hope it is not, but, am thinking good thoughts for all of you.
( 1 comment — Leave a comment )

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