Back on the TED

Back on the TED

So far 2016 has made me yearn with longing for the return of 2015.

And 2015 was a really rough year for us.

Go, 2016!

The sad part is, the New Year started off great! I had to work that weekend, but I picked up a nifty 30+ hour layover in Miami Beach. Not a bad way to spend the first day of the year, right?

Darrel even flew out to join me. He dropped the kids with my parents and the two of us got to spend one single, glorious day laying on the beach in 83 degree weather.

Swimming in the ocean that day was the first time I’ve been immersed in water other than a bath tub in over 4 years.

We didn’t stay long; the water was actually very cold, and the beach was terribly cozy and warm, so most of our time was spent laying directly on the sand, side by side, quietly enjoying the ocean breeze, the sound of the birds and the waves and the people playing, and just genuinely re-lax-ing.

Y’all. It was heavenly.

I haven’t truly had even a moment of pure relaxation since before Jed was born.

I’m so perpetually tense, actually, that even in such idyllic conditions I only managed about half an hour of truly being relaxed before my mind freaked out, kicked into overdrive and started thinking again. “Why can’t I relax like this at home? I know a change in scenery can help you relax. Is it time to change up our home decor so I can manage some relaxation? Because it can’t be good for the kids to have such a stressed out mommy. But we can’t afford any home decorating and even if we could, it would just be a temporary fix because then I’d get used to it and it wouldn’t be relaxing any more.  And oh my God! I’m supposed to be relaxing right now and I’m stressing out about why I can’t relax at home so much I can’t relax here! Something is very wrong with me!”

To his credit, Darrel didn’t take offense at my brain running off without us, and we both laughed (somewhat ironically) at my predicament.

We decided we absolutely HAVE to get ourselves to the beach for as long as we possibly can ASAP. Our mental health desperately needs a vacation to stay healthy.

We came home on the 2nd and spent the next two days milling about the house, slowly and easily getting things that needed doing done, and just trying to maintain that peaceful, beachy feeling.

Unfortunately, our lives don’t really take vacations, even if we want to.

By January 3rd, I had started putting some fairly minor symptoms I’ve been having together and began a conversation with my FPIES/MCAD mommy friend/guru (the one who is helping me manage my probable MCAD until my specialist appointment in September) to get her input.

In the end, we both concluded that yes, I am low-grade reacting to at least one of the foods I am now eating since beginning food trials for myself.

It’s little things. (Somewhat TMI, actually, but…I’m gonna go for it anyway.) Nightmares. I’ve been having a lot more nightmares since November. I’ve also been having a harder time falling asleep and waking up feeling rested.

Gas. I’m back to having farts that could clear a room, much to my embarrassment.

A case of mild brain fog. I’ve been more forgetful and less “sharp” than I’ve been the prior three years.

The fact that my compounded dipenhydramine (Benadryl) knocks me out and makes me feel better the next day when I’ve taken it to help me sleep and NOT for any food reaction.

Hunger. Let me rephrase that. HUNGER. I’m constantly hungry, no matter how much I eat. I’m plowing through almost as much food as I ate when I was the sole source of nutrition for Zac via nursing, and my clothes are proving that. They’re starting to get snug, and by God, I WILL NOT BE FAT AGAIN.

Other than my panic over the hunger and tight clothes, the symptoms are subtle and not life altering. But put them all together, and they were a clear sign that something isn’t working right for my body.

Conclusion: I’m reacting. Actionable response: I’m going back on the breastfeeding TED.


So last Monday, the 4th, I went back on my TED. It was very  hard to skip bacon and hot cocoa, lemmetellyou. But when food=pain and/or discomfort? It’s a whole lot easier to say NO.

Tuesday I knew we had a busy day. Jed’s psychiatric eval for SPD (Sensory Processing Disorder) was on the schedule, followed by my bi-monthly orthodontist appointment. It turned out to be one of the most stressful days I’ve had in a long, long time.

The shrink eval took 2 hours, and he ordered 9 tests for Jed. We don’t have a diagnosis for him, yet, of course, but I’m pretty confident the results will say SPD…and possibly more.

We waited two months for this appointment because we were changing insurance as of January 1st. Our old insurance would have covered absolutely nothing of this evaluation, and our new insurance was in network and would cover almost all of it. It seemed well worth the wait.

After the appointment, the receptionist had some bad news for me. Aetna is our new insurance carrier, and the shrink IS in network for Aetna…however, my version of the Aetna plan outsources their mental health benefits  to another company, and, you guessed it: the shrink is NOT covered in network with the outsourced mental health company.

Bad words bad words very very bad words.

All is not lost; even out of network our new insurance covers more than our old insurance does. But we’re still looking at close to $1,000 for this evaluation when we expected it would be under $100. Because, you know, we just canNOT get ahead. No matter what we do. It isn’t allowed, apparently.

We left the shrink and headed to the orthodontist. He put me in my “finishing wires”, which are the heaviest to date. After adding some rubber bands between the brackets, which caused me the first actual in-office pain I’ve experienced so far, I was informed that from now until May I get to come to the orthodontist every 5 weeks instead of every 2 months. Yay.

Jed had found a little boy to hang out with in the orthodontist appointment and when we left, he gleefully turned to me and exclaimed “Mommy! Now I have FOUR friends!” Which just broke my already wounded heart even more. I hate our limitations SO MUCH for what they have done to my children.

After that, I felt the kids and I deserved a break. Even though it was in the 40’s, temperature wise, I took them to the park. We weren’t alone; a good gaggle of kids were playing that day.

Shortly after arriving, I got a call from the OT office. They finished reviewing Zac’s evaluation and were ready to schedule him for therapy. They recommend three hour long sessions per week.

Now, I’m much more concerned about Jed’s SPD issues than I am Zac’s, and they only recommended TWO hour long sessions per week for Jed, so, what the what?? Why do they recommend so much more for Zac? The receptionist couldn’t say; we’ll have to talk to the owner/evaluator when we bring him in for his first appointment.

While I was on the phone with her, Zac started crying. This is nothing new. He cries very easily, especially when he doesn’t get what he wants. So I basically ignored it, considering I was on the phone trying to work out a therapy schedule for him.

Until I saw another mother come running up to him and start wiping his face. Uh-oh.

I ran over to him and saw that he was covered in mud. It was in his nose and mouth, caked around his eyes, in his hair…it was awful. I quickly told the receptionist on the phone that I would call her back and hung up before getting an answer, grabbed Zac and took him to the park bathroom.

They have sinks there to clean him up, you see. It being winter, though, those sinks had ICE COLD WATER in them.

Oh, yeah, he did not like that at all!

But after rinsing as much mud off him as possible, Zac shrieking the whole time, I stood him back on solid ground and he immediately looked up and said “Can I go play again, Mommy?” So, yeah, he was fine.

We went back outside and all was right with the world again, so I called back to schedule those OT appointments and apologize for hanging up.

Then we left the park, and Zac wouldn’t sit in his carseat. He finally screamed that he had a poopy diaper. I got set up in the back of the SUV to change him and discovered, to my horror, a diaper that looked identical to the diapers we were getting over a year and a half ago. Solid liquid, horribly mucousy, and possible blood.

Yeah. I pretty much wanted to vomit when I saw that.

His diapers since then haven’t been as bad, but they haven’t been good. Lots of mucous, which makes me just sick to my stomach and nervous, particularly since I have no idea what is causing it.

Tuesday was a pretty terrible, rotten, no-good day.

Wednesday I woke up feeling like crap. Sore throat and total body aches. I watched myself carefully and tried to take it easy, but there’s only so much “easy” you can take with two little boys running around. Every time I moved I got dizzy. It did not bode well for my return to work on Thursday. (Actually, I was scheduled to work Friday but had to fly up on Thursday morning.)

I prayed for a miracle, though, and went ahead and got ready for work and coordinated child care, anyway.

Thursday morning, though, I woke up with not only the sore throat and body aches, but also a head that felt like it was full of concrete, complete with runny nose, sneezing and coughing.

I called out sick and spent the day on the couch.

Friday, with Darrel home to be able to watch the kids, I went to the doctor. I have a bacterial sinus infection.

If I needed further proof that I was reacting to my foods, I got it. Pre-TED, I suffered from chronic sinus infections. I’m not exaggerating to say I had a sinus infection at least once every 4-6 weeks. Since starting the TED? Zero sinus infections.

Sinus infections are one of my “reaction” signs.

Of course, my MCAD friend expert tells me the stress from Tuesday could have triggered a mast cell reaction in my body, but I think it’s clear that the food wasn’t helping my physical situation.

The good news is that I’m able to at least try to be somewhat normal regarding treatment options. I decided to be brave and get non-compounded prescription medication for myself. Paying just $3 for a bottle of pills felt weird after the last three and a half years of dropping over $50 per bottle of something as simple as benadryl.

And when I came home from the doctor I found that Jed had used the confusion of my absence to sneak the leftover candy canes we hadn’t thrown away after his last reaction. He ate almost a whole box at once. He actually behaved okay throughout the day, though I think that was sheer will power on his part. I had busted him eating the candy when I got home, and he wanted to give the parental units no cause to take those candy canes permanently away by behaving like the Tasmanian Devil on crack. Sorry, buddy. Too little, too late. I already chunked the candy canes.

Oh, and by calling out sick? I’m losing a few hundred dollars in pay. My sick bank wasn’t quite big enough to pay for the whole trip I was scheduled to work.

I spent the weekend completely incapacitated, slathered up in peppermint EO’s, popping my antibiotics and dipenhydramine right on schedule, getting up only for bare necessities. Darrel did ALL the cooking and cleaning and child care the entire weekend. I was useless.

Today is Monday. I still feel like crap, but Darrel is back to work. I guess I’m going to have to rally. Somehow.

Yep. The first week of 2016 has found us back tracking my diet, me sick as a dog (really, how did I ever function with constant sinus infections? I feel like I’ve been run over by a truck!), Zac having mystery reaction diapers, Zac needing far more OT than we thought he would need, Jed sneaking food every chance he gets, Jed possibly having a worse diagnosis than just SPD, and our finances a good $1,000-$1,700 in the hole (depending on how many of those 9 tests the shrink wants insurance actually agrees to pay for).

2015? You can come back. I’m not liking 2016 very much at all.

Tagged , , , , , , , , , , , , , , . Bookmark the permalink.

Comments are love! Tell me what you're thinking!