Tummy update: One year later!

It occurs to me I never explained what we finally figured out about my stomach issues and I wanted to pass on the info in case it might be able to help someone else.

I was hospitalized a year ago this month. The abdominal pain was excruciating, the joint pain was terrible, the nausea was never ending. The doctors found a long section of my small intestine was extremely inflamed and they stuck all manner of items into all manner of places trying to figure out why I was so sick. My stomach blew up to third trimester proportions. Dilaudid was my only friend... Everything else made me nauseous. It took weeks to get enough energy up to do short days at work, and I needed naps for months after. Steroids helped, and they helped a lot, but they also led to joint pain, edema, and weight gain, and my face starting bearing a striking resemblance to Zach Galifianakis. I slowly weaned down from 22 pills a day to none (on my own, without GI guidance) because, you know what? After I underwent an outpatient barium enema (OH MY GOD, never again) and swallowed a camera that took 56, 000 pictures of the inside of my digestive tract, the doctor told me I was fine.

Except I wasn't fine. I would drag myself upstairs sometimes to take a nap at 10AM and wake up unable to bend my knee. I would poop 5,008 times a day whether I wanted to or not. I would randomly become so ill I couldn't keep anything down and could hardly walk through my house without getting winded, and I knew I wasn't fine.

So it was Crohn's, obviously, right? That's what the signs all pointed to. The migratory arthritis, the fevers at night, and muscle aches, the abdominal cramping, the extreme lethargy, the general lack of enthusiasm or even tolerance of much of anything. Steroids helped, so obviously it was Crohn's, right? Except I didn't want it to be Crohn's, and I never really believed it was Crohn's... But what else could it be?

But then, as it often does, Facebook saved me. After my friends heard me bitch and moan for months about my symptoms, a couple of friends mentioned Celiac disease. I was skeptical at first, but I was willing to give it a shot to not feel like total crap every day. And then something magical happened... I felt better. Not perfect, but better. So I started looking closely at the other foods I was eating that might be triggers and one day it all clicked. Gluten is a trigger, and I have an obvious gluten intolerance, but it's more of a nuisance. My biggest culprit of my stomach woes is none other than sucralose. Splenda. The yellow packets. Oh, wow.

I used Splenda in everything. EVERYTHING. And the things I didn't use it in, I discovered over time the manufacturers used it in there anyway. All my favorite things... Sweet tea, Sonic's peach tea flavor, my Lifesavers orange mints I loved, my gum, my cough syrup, my sleeping pill I took at night to hep me sleep better when my tummy was hurting... Once I eliminated all the sources of sucralose in my life I have become 100% fine!!! My energy is back, the fevers are gone, my stomach isn't bloated anymore, my joints don't hurt, the two finger joints I haven't been able to bend for a year will now bend again, the acne that started about a year ago has gone... I feel like a person again. Like a 32-year-old person, not a 75-year-old person. It's been amazing.

I still can't do gluten, although I sneak some in every now and then. I don't pay for it like I pay for accidental Splenda use; that's much more unpleasant.

So, this has been a public service announcement. The longer I understand how these chemicals affect my body, the more I wonder how many of my friends with fibro or joint pain may be suffering from some of the same issues but just don't know it yet. It's worth a shot to give it up for a couple of weeks and see how you feel. Pain meds didn't fix it at all for me, but diet change did.

And thus ends today's episodes of Mollie's Being Dragged Kicking and Screaming into Healthy Eating. You may now resume eating your delicious foods I can't eat anymore. Enjoy them while you can!!

Just keep swimming, swimming, swimming

I was talking to a friend earlier today, and that old adage came up again... "Well, you know, God won't give you what you can't handle. He knew what He was doing when He picked you."

It's been addressed before, and it will be addressed again, but I'm going to break it down for you in simple Mollie fashion:

Bitch, please. What a load of crap.

In the beginning it's good for us to hear. I'll admit, I drew strength from people telling me God picked me. Obviously God knows what He's doing, right? God never makes mistakes. But here's the rub... Once you've been told so many times that God picked you, and God did XYZ to you for a reason, you begin to get really pissed off at God for being such a douchebag.

Yeah, I went there. Because, you know what? That's what you imply when my baby is lying there suffering, that God is doing that to him because I can handle it.

Prior to March 23, 2008, I'd have agreed with you. Prior to watching my babies suffer and hearing "Oh this is God's plan" 9000 times from well-meaning souls who didn't know what else to say, I'd have said the same thing. I didn't question, not before that day five years ago. Oh, and don't think I wasn't told to "Be strong and don't question God." I was weak. I questioned. I swore at Him. I questioned Him some more. And do you know what happened? I began to think about God in a new way. I began to understand Him in a different light. I think I got a whole lot closer to the Truth.

Every time you say "God picked you because you were strong" you minimize what we, and everyone else goes through everyday. Five years ago I was you. When you get thrown into a lake you sink or swim. We swam, not because we were strong, but because we didn't want to sink... and some days we still get tired of swimming. My kids are lucky to have us as parents, but you know what? There are children dying everyday because they were not so lucky. And God didn't pick them for that, either.

Five years into this, I tell you I don't think God picked us. Yes, I have a voice, and I use it. I've used my voice to speak out for my children and for others who need voices. I have used my voice to endear my children to people across the country, and give faces to children whom people might have otherwise pitied, or even worse, seen as valueless. God gave me this voice. God has given me every tool I've needed to walk through the storms, but He didn't pick me. I like to think of Him more as my team sponsor. He didn't get us into this mess, but He's got the capital to keep us up and running.

So the next time you, or someone you love, are facing a hardship, please remember this. You are as strong as you decide to be. If you want to swim, by God, swim... And I promise not to tell you God picked you for it, but I can tell you where He keeps the life vests.

One of my favorite stories ever

I was recently telling someone one of my favorite stories and I realized I’d never shared it with the world… And I think the world needs to hear it.

When Dax was about a month and a half old, living very precariously still in the NICU, he began slowly easing his way into kidney failure. His urine output slowly decreased until one Monday his primary nurse sat me down and told me the doctor had officially diagnosed him with complete renal failure. I looked her in the eyes and asked her if I should be worried. With tears in her own eyes, she shook her head yes.

We talked a while about what it meant. Realistically speaking, there was nothing they could do.

The doctor came through a few minutes later and she explained to me there were no dialysis machines for babies that small. They had stopped all meds that might have renal side effects, but still, he was having absolutely no urine output. His swelling was worsening every day.  All we could do was pray. If Dax’s kidneys didn’t begin working soon, we were looking at him dying within a few days.

We were obviously devastated.

So we prayed for pee. A whole lot of people prayed for pee.

Nothing.

That Thursday I was sitting vigil at his bedside when my mom walked in and surprised me. She lives about six hours away and I hadn’t known she was coming. She sat down with me and said, “I have a confession to make.”

(smile)

She went on to tell me she’d held it all together all this time. For over two months she’d dealt with us losing Aubrie, me being hospitalized, my father being in ICU, a very sick Daxton, and now Dax’s apparently impending death. She’d held it all together beautifully up until she was driving north on Highway 45 and got stuck in road construction. That, it appeared, was the last straw.

“I turned off the radio, I rolled up the windows, and I let God have it.”

She said she’d fussed and cussed and told Him under no specific terms He was NOT taking her grandbaby; that we’d been through enough and He needed to cool His jets and go pick on someone else for a while. She smiled after she told me. I could tell she’d made some peace that day.

We left the hospital at shift change and went home to eat supper. I called the hospital at nine, like I always did, to check his weight for the day and see how the shift was starting. Nurse Debbie answered the phone that night, and in her typical nonchalant fashion she said, “I came in and they were all fussing about renal failure this and renal failure that. I don’t know what all the fuss is about; that kid’s peed 150ccs since I got here.”

 I whooped and I hollered and I jumped and I yelled to my mother, “Oh my God! He’s peeing! His kidneys are working!”

My mom just smiled.

“It’s proof God’s a man. You have to bitch at Him before He listens.”

Most likely to succeed

I was looking through an old high school yearbook a few months ago and I had a little laugh at myself. My senior year I, on purpose, was in almost every club… I can remember staying after school for softball, then after that as editor on the yearbook, then after that for aerobics. I took Latin because I wanted to, sang in the choir even though I couldn’t sing, was in FFA because cowboys were cute but I had no desire to farm. I had a constant desire to do more, to be better, to be the busiest… To be the best.

To win.

Winning. That was what it was all about. I needed straight As… The highest ACT score… I needed to be admired. I needed lots of letters behind my name. I wanted awards. My desire to achieve did not go unnoticed. I was voted “Best All Around” and “Miss WHS” and homecoming court by my peers. I was voted to the Hall of Fame and “Most Likely to Succeed” by my teachers.

And that mattered to me. It mattered a lot.

Looking back, it’s the “Most Likely to Succeed” label that makes me smile the most. My teachers saw something in me that made them feel I would be successful. At that point in my life I thought that meant money, respect, a big diamond ring, the fancy car, the big, fancy office, the PhD, the MD, the 2.5 kids with the fancy house. I don’t know if that’s how the teachers defined “success” or not. All I can say definitively is 17-year-old high school senior Mollie would have not classified the life I’m currently living as a “success.” This was so not in my fifteen-year plan.

That’s sad because, you know what? The things I would have looked down on at that time are the things I now feel are my biggest accomplishments. If there had been a way to tell me back then I would have a dead child, a medically complicated/developmentally delayed child, and a child with autism, I would have had a hysterectomy on the spot. I wouldn’t want those smudges on my resume. Kids who are less than perfect, straight-A, scholar-athletes? I hardly think so. Not on my watch. Not from my uterus. No way, no how.

How I laugh now, knowing my babies are how I have redefined my success.

I’m thinking about all this today based on some recent comments I saw posted on an article about a mother who has been requested to remove her child from school property each day at lunch time to tube feed her. Not only will the school no longer do it, they do not want the mother to do it on the premises. The blatant disregard for FAPE and IDEA from the school aside, the comments left on the article from people who don’t feel children with tubes, trachs, or any disability, really, should be educated in public schools… They hold back the other children… They use up funds and time that would be better spent on educating their own children… Students who are “normal.” They’re just drains on society, is all. Obviously, anyone with a feeding tube is a waste of educational funding.

Maybe 17-year-old, super successful Mollie would have felt the same way. Survival of the fittest, right? I mean, if you don’t have the potential to change the world and make millions, what good are you after all? Why would I have wanted to, or even needed to, waste one minute of my time? Oh, maybe for a public service project. That would look good on my resume. HR loves volunteer work on your resume. That would help land that dream job.

Seventeen-year-old Mollie grew up some in college. I learned to direct my life to an area which made me happy. I took a job working as a tech in an acute psychiatric hospital (because it would look good on my resume, of course.) But, you know what? I learned that I liked working with people who were a little different. I found I could learn a whole lot more from a Vietnam vet with PTSD than a pre-med frat boy who grew up on daddy’s money. I learned someone in the midst of a severe paranoid delusional schizophrenic break would be nice to me if I treated him nicely and with respect. I learned everyone had potential to bring goodness into the world. Not everyone chooses to, but everyone has the potential.

That’s true for everyone, regardless of race, sexual preference, gender, religion, height, weight, hair style, number of tattoos, diagnosis, socio-economic status, and even IQ. It’s a choice we all make, every day.

Fast forward through all the lessons I’ve learned over the past five years, the ones I’ve had to really, really internalize. The crow I’ve had to eat. The asses I’ve had to kick and the ones I’ve had to kiss. The toes I’ve had to step on. The three children I’ve birthed who I would lay down my life for this very instant if I needed to.

Perfect? Yes. Maybe not to everyone. Maybe not to 17-year-old Mollie. Maybe not to the average 35-year-old  soccer mom. Maybe not to the 55-year-old congressman. Definitely not to the CEO of my insurance company ;) Maybe not even to you. But here’s what I do know: everyone has potential to bring good into this world… Even my baby with a feeding tube and my baby with autism; even my baby who lived just one day. We don’t all shine the same lights; we don’t all shine them in the same direction or at the same brightness or in the same color… But just because your gift is being a cunning salesperson or a charismatic leader or a professional athlete or a well-known minister… Don’t for one second think your light is more important than anyone else’s.

You may do well in life, but do you do good?

I no longer long for a straight-A child with a baseball scholarship to a strong SEC school. I want a kid who works his ass off for a C in math. I want a kid who respects others and loves life. I want a kid who doesn’t feel life owes him not one thing, but would give the shirt off his back to a stranger. I want a kid who smiles, and means it. I want a kid who opens doors for others and knows “no” means “no” and says “please” and “thank you” and “I’m sorry.” I want a kid who loves people regardless of their differences, and treats them accordingly. I don’t know what the future holds for my babies; the world remains their oyster. But this I know, one of my kids may be bagging your groceries at Kroger one day, and he’d better be the nicest damn grocery bagger you’ve ever had. Or you know what? One of my kids may be your neurologist one day, and he'd better have the best damn bedside manner and the best listening capabilities you’ve ever come across in a physician. I don’t care which; I don’t care if they do well, but they better do good. That’s all I hope for.

That’s all I hope for any of us anymore.

So, yes, I have succeeded. I have succeeded in learning the secret to success is not making money. It’s not being in charge. What makes me successful is not the letters behind my name (and I have a few ;) or the amount in my bank account (it’s not very much.) My biggest successes are my children, and the goodness I have helped bring into the world through them. They have made this world a better place.

I don’t expect everyone to see that. I don’t expect everyone to understand that. All I can hope is for others to tolerate it; maybe even embrace it. Allow my children, my imperfect, amazing children, to live in the same world as their imperfect, amazing children. To accept their differences and their weaknesses do not diminish their strengths, their will to live, their hearts full of compassion. To treat them with respect and love even if my children can do them no benefit. I will teach my children to do the same.

Isn’t that really the secret to success after all? I’m pretty sure it is. That’s winning at life, and I want the gold star.

Dax vid, long overdue

A boy update before they're in college

I do believe I’ve become a quarterly blogger. Remember when I used to blog once a week? Yeah, me either. It was a long ago time when I had one kid that didn’t move much and one still just giving me indigestion. Now they both move so much… And still give me indigestion.

 I used to read other people’s blogs, also. I find there’s no time for that anymore, either. So if you’ve noticed I never comment on your blog posts anymore it’s not because I’m not interested or I don’t care… I’m just out of touch with anything that doesn’t directly involve my kids, job, Sesame Street, Leap Frog, or sleep. So, for my blogosphere friends, and my real life friends, I apologize!

 So, guess what?! Ladies and gentlemen, we have progress. On all fronts. It’s a beautiful thing.

Let’s start with me because, well, frankly, I don’t really matter so we’ll get me out of the way early and move on to the important stuff. I got pretty sick again in December and probably should have gone back to the hospital, but… well… ain’t nobody got time for that. Per some suggestions from some medical friends I looked into celiac disease and went gluten-free just to see and, poof, I am better! I’m not 100% sure it’s celiac disease, possibly just a gluten intolerance of sorts, and possibly all a product of sensitivities from using Splenda (which I absolutely cannot use anymore, so I’ve discovered.) I’ve done some treatment reversals (because I’m a behavior analyst and I like good data) and there is definitely a relationship between gluten and my tummy woes so, for now, I’ll try to keep the gluten out… Which is extremely hard as some of you know… Gluten is a sneaky little whore who hides away in the most unsuspecting of foods. She’s the James Bond of proteins, I swear.

 But enough about me.

On to my TyTy. At last report we had just gotten an autism diagnosis for Tyler and the enormity of that was still sinking in a bit. I’m pretty much over it now and I’m absolutely certain he is a genius and the mayor of TylerTown. I got him in to see Dax’s neuro and was prepared to have a talk about possibly trying a stimulant for Tyler’s hyperactivity. If you’ve met me, you know I pretty much know what I want going in and tell the doctor what it is that I want, how I want it, and when it will start, and I was totally okay (after much internal battling) to try a low dose of Vyvanse. While the doc was evaluating him and I had not yet told him my feelings, the doctor says “Take a minute while I am interacting with him to think about how you feel about medications.” Oh, yeah, please, like I was coming in open-minded. Please. I already have my answer formulated in my head. I know everything, doc, geez. Don’t you know that yet?

 So, he finishes playing with Tyler and says, “Sometimes these kids have a really hard time accessing the world because they can’t get out of their own little worlds. Sometimes medication can help them get into our worlds.” Well, duh, that’s exactly what I was thinking.

“I think we should try him on a low dose of a medication,” he says. Well, duh. I knew you would say that. 

“I totally agree with you. I’m willing to try a lose dose of Vyvanse for his hyperactivity,” I say.

 “Not a stimulant. An SSRI. Zoloft.”

 And at that point the whole conversation I had worked out in my imagination exploded and a piano fell on my head. We talked a bit, I agreed to try a few other things first, and I left with a scrip for a low dose of Zoloft for Ty’s “OCD tendencies.” I had absolutely no intention of having it filled.

 Fast forward a couple of months, and, after much deliberation I decided to give it a shot. Worst case scenario I could just take him off it, right? But he is doing AMAZING. After about two weeks he seemed to be noticing things he hadn’t noticed before. After about four weeks he began identifying random items and using language to request items more frequently. I just followed up with the neuro this week, and the best way I can describe it is like before he lived in TylerLand all the time, with occasional trips to our world. Now he lives on the outskirts of our world with occasional trips to TylerLand. His personality is the same, but he’s happier, his affect is brighter, and he’s present with us so much more. He’s working on potty training and following instructions and imitating language and picking up on routines he hadn’t noticed before.

That makes for a pretty awesome Christmas present.

As for Daximus Maximus, he is (knocking on wood as I type) really stable right now. 2012 was such a good year for him health-wise! He still thinks it’s fun to scare me at night from time to time, but it’s more like “someone grabbed me from behind and said ‘BOO!’” scary rather than the “someone is chasing me through the house with a chainsaw” scary at which Dax has been historically so damn good.

 Oh, and quick story. Dax had a vocal cord plumping procedure completed on Thursday. I pretty much figured we were screwed when I drove into the parking garage with my NPO toddler and got a good parking space. I knew at that moment that they were probably going to amputate the wrong leg, if you get my drift. I couldn’t have been more wrong. We had the best OR experience we’ve ever had, complete with meeting great people in the waiting room, great pre-and post-op nursing care, and anesthesiologist who was formerly a pediatrician who was amazed and awed at how wonderfully my little 23-weeker is doing. She changed up the normal anesthesia routine and Dax made it through without being intubated, without emergence delirium, and with only a tiny bit of oxygen need before going home. It was great.

 Equally exciting, for the first time Dax was able to process he could not eat or drink until after the procedure. Not an easy task for any kid with an afternoon surgery, but at 2:30, after being completely NPO since 8AM, Dax was saying, “Surgery first, then milk,” and I’d confirm, then he’d say “I want surgery, please.” What a trooper.

At any rate, his language has taken off, his balance and coordination are improving, his appetite is down-right disgusting at times, and he’s absorbing everything. Weight-gain sucks, but he’s getting taller, expressive language still sucks, but it’s better, and potty training will probably NEVER EVER HAPPEN. Ever.

 Ever.

 And that’s the end of my update. I’m sure there’s more, but my brain is shut off for the night. I’ll try to post some pics soon. These boys are growing like fungus. On weeds. On crack.

Seriously.

Dax > Chuck Norris