8 more days until Rex, our D.A.D., is delivered to our home
. .
In the meantime, I peruse the left side of my blog and take
note of the fact that I’ve written nothing about food allergies/celiac disease,
etc., like I pronounced in my little “About Me” section of my blog. This is a topic I’m not sure your average
drop-in reader wants to spend time reading about. Why?
Because it means accountability, hard work, deprivation of the simple
pleasures of life (like popcorn and frozen yoghurt, to name my personal
favorites), stuff like that.
So, there’s probably a few who, right about now, are rolling
their keyboard cursor on up to the top right corner of their screen to hit that
little red “x”, right about now . . . WAIT!
I have a really good story though! You just might want to hear it!
Ahhhh. . . . I guilted you into coming back and listening to
this food allergy story of mine. Take a
seat. You just might learn something (or
not?).
Here goes . . . .
Big Guy and I were at a follow-up doctor’s appointment when
the doctor said, “How long has he had this rash?”
“Oh, I don’t know. It
comes and goes, seems to get worse in the sun.
I just thought it was from getting too much sun,” I replied.
“I want you to get some blood tests run. I’m concerned that it might be a condition
called dermatomyositis,” she said with all seriousness. She wrote down the name “Dermatomyositis” and
the blood test “ANA” and “CPK” on a piece of paper and handed it to me with the
final words, “Please get those blood tests, and if you have any questions about
this, feel free to call me.”
“Oh brother!” I
thought to myself. I am not going to get
this boy poked AGAIN by some big needle that he hates just for a little sunburn
rash around his eyes. Despite the 24,511 needle pokes/insertions in the past 6 ½ years my Big Guy’s had (that is
actually how many needles have been inserted into him between all his blood
sugar checks and pump site changes he’s had since he was diagnosed at age 5 1/2),
he still hates, and I mean HATES, getting his blood drawn. We were not going to do that, no way.
I completely dismissed the doctor’s recommendation, threw
away the little piece of paper with the word “Dermatomyositis” and put it out
of my mind, or at least into the far back recesses of my mind.
By the late part of summer, after a lot of pool days and hot
games of playing basketball in the sun, lots of cool yoghurt smoothies and G2
Gatorade bottles, Big Guy’s “sunburn rash” was getting redder and redder. We kept loading on the sunscreen, especially
around the eyes where he was reddest, but to no avail. The “sunburn” was even worse. It was that little piece of paper imprinted
in the “far back recesses of my mind” that kept popping up in my mind. “Dermatomyositis” – hmmmm. “I wonder what that is?” I thought. “Maybe I should just look it up to be sure I’m
not missing something important.”
Well, needless to say, “important” isn’t quite the word for
my thoughts as I read the results of my Google search. Shall we say, “shocking”? When I found out it was an auto-immune disease
in the family of lupus that can leave a person bed-ridden, I was floored. Bed-ridden, muscle cell disease, auto-immune
disease, steroid treatments? This could
not be happening. Didn’t we already have
enough going on? My son lives to run and
play sports! You can’t take this away
from him too!?
“Uh, Dr. M.? This is
Susan, the mother of (Big Guy) and I’m going to go ahead and get those blood
tests you recommended a couple of months ago, but I’ve lost the piece of paper
you gave me. Could you tell me what they
are again so we can get that taken care of?”
Dr. M. – “I’m so glad you called. Yes, I’ll call in those tests for you. I’m really glad you’re going to follow-up on
that. I’ll be looking for the results
and will get back to you.”
Within a week we got his blood drawn (Needle #24,574
inserted into him by then – just had to insert that here to give you an idea of
what my boys go through each week).
A few days passed, and it was a Sunday afternoon, we’d just
gotten back from church and lunch. I
picked up the phone and heard the three beeping dial tones, indicating I had
messages. “Susan, I got those results
back for (Big Guy) and wanted to talk to you about them. Could you please call me at my home number or
my cell number today?”
This was my son’s doctor.
This was Sunday. This was a
message to call my son’s doctor on a Sunday, on her cell phone, on her home
phone, anyway to reach her TODAY, a SUNDAY.
In no way could this be good news.
I hung up the receiver from voice mail, my hand shaking. No.
This cannot be. No way.
Now here comes the amazing part of this story:
Ring-a-ling-a-ling! No sooner had I hung up the phone when it
started ringing. It was one of my BFFs –
“Hey! I had to call you. We were at church today and we were singing
this song and tears just started streaming down my face because I just started
thinking of you and all you go through and this verse from Deuteronomy 20:3
came up, and I felt like I should share it with you.” (It had been a busy week and we hadn’t
talked, so she knew nothing about the possible dermatomyositis diagnosis, and
thus had no idea what recently had “popped” up in our life).
Do not be fainthearted or afraid; do not be terrified or give way to
panic before them. For the Lord your God
is the one who goes with you to fight for you against your enemies, to give you
victory. Deut 20:3
Oh my Lord! I read
those words now, again, and can’t begin to explain to you how comforting those
words are to me now. How much the Lord
knows about us! And How He Cares! I was on the brink of pure panic, and the
Lord was recognizing that in me and telling me He was with me to fight
for me against my enemies (all
these diseases we faced) and to give us
victory! And He said all that to me through my BFF and
at just the right moment. Awestruck.
But, unfortunately, my response was not so “noble” that
Sunday afternoon on the phone with my BFF. In fact, it is down-right embarrassing. Here’s what I said back to her:
She almost didn’t finish reading
the Old Testament passage in Deuteronomy before I blurted out, “Don’t tell me
this! I can’t hear this! If you tell me this, then it means that what
I dread is happening. I think (Big Guy)’s
doctor is calling me today to tell me that the blood tests for this horrible,
auto-immune disease called dermatomyositis are positive.”
Now, isn’t that a strange response?! How embarrassing. Oh, me of little faith! My BFF was wise enough to just listen to my
worries about what this doctor’s call on a Sunday could possibly mean and then
gently reminded me, “But you do have
this Word from the Lord now. He knows
what you’re going through and He’s with you!”
“Yeah,” was all I could respond. . . . oh me of little faith.
Back to the doctor’s call . . .
I called the doctor back, and sure enough, the results for
an auto-immune disease (different than diabetes) were positive, but “further
tests were going to have to be done to give a definitive diagnosis.”
Back to the lab with Needle #24,637 (1 week later) inserted
for another blood draw.
Further blood tests were still inconclusive, but for lack of
better testing procedures and the reddened eye rash continuing to worsen before
our eyes, the rheumatologist and the dermatologist felt the need to be
proactive in some way to try to postpone further symptoms of this disease. The medicine Plaquinil was suggested as “preventative”
medicine for the disease. I just didn’t
feel right about him taking a medicine with some possible serious side effects
when no one was very sure what was going on.
So, I asked them if I could take the “alternative” route and go to an “alternative
doctor” who might approach it more from a diet perspective. Both doctors agreed hesitatingly, so off I
went.
I found an osteopathic doctor. With this doctor we began our de-toxification
diet. And boy, was it tough. Imagine getting a 12 year old boy to
eliminate all dairy, all bread/pasta, all tomatoes (no pizza, no spaghetti),
all soy, all meat, all caffeine, all corn.
Basically anything and everything a pre-teen wants to eat. (Celery, anyone?) It was tough.
But my awesome Big Guy hung tough and persevered through the diet. Remember that accountability, hard work and
deprivation I mentioned at the beginning of this entry? He was all about that and more. I couldn’t have been prouder. And my husband did the diet with him to give
him solidarity. He couldn’t ask for a
better Dad.
What we found out from that de-tox diet was that he was
allergic to corn. Corn! All those cool yoghurt smoothies and G2
gatorades all summer long were full of corn!
Who knew?! Start reading those
labels people. You’d be surprised how
much “corn” you’re actually eating, and FYI “maltodextrin” is a corn-based
somethin’-or-other.
When he eliminated “corn” from his diet, his eyes “mysteriously”
lost their reddened sunburn look, he started feeling better with more energy (I
didn’t even know he’d been feeling bad in the first place!) AND his ANA blood
test is almost completely back to normal, signifying he’s no longer fighting an
auto-immune disease, apart from his diabetes.
We were amazed. And so were the
doctors!
Be with us, the
Lord is.
Fight for us, He does. Comfort,
always. Victory, Yes! Amen.
mysterious ways! ♥
ReplyDeleteAmen indeed! Wonderful post, Suse!
ReplyDeleteThank you Rebecca!
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