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).
Here’s what the Lord said to me through my wonderful BFF that day:
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.