Family life, Paleo-ish eating and Coping with Chronic Illness

Archive for October, 2013

Phase One

smoothie

This is Eddie’s breakfast and night cap, well the stuff on the counter is for him anyway. The boiling water is full of brats for the rest of the family. Poor Eddie. One avocado, spinach, pineapple, strawberries and a scoop full of “Rockin’ Wellness”. This “Rockin’ Wellness” is part of our new practitioner’s plan. We do have a fairly logical plan so far, but take a close look at the packaging for the “Rockin’ Wellness”. How does that hit you? Does it fill you with confidence that we’ve found the missing link? Because to Scott and me it looks a little like Eddie could have created this name and logo with some of his buddies for a school project or a You Tube video. What are we going to get next, a bottle of medication called “Hang Ten, Dude”? Jury is definitely still out.

In addition to the protein drinks, Eddie has been completing some surveys. The Doctor wants to take a fine tooth comb through Eddie’s insides, and understand Eddie’s habits. I’m glad the Doctor is asking and not me. Eddie hates talking about this stuff. I don’t even ask any more. I mean, most 16-year-old boys could sit and talk with their moms about the shape and color of their poop for hours. Eddie just isn’t one of them.

In fact, for all those super kind people who have asked me what they could do to help Eddie over the years, there is one thing. If you know him and you see him, you could ask him about wrestling, MMA or even his math homework. He’s a friendly guy and is happy to chat about anything really, anything that doesn’t have to do with being sick that is. He is just so over it, you know? He’s loathe to act like the 90-year-old man who loves nothing more than to hash over his latest Bursitis flare up for the listener’s entertainment. Eddie has given me clearance to blog for a lot of good and noble reasons, but he doesn’t read my blog. In fact, he doesn’t read or watch anything that has to do with being sick. He’s more the, think well and you’ll be well kinda guy. Gosh, I like that kid.

The Doctor is going to take all the information Eddie sends in and then create our new nutrition guidelines. Part of those guidelines will include a lot of juicing. I am not one to sit around waiting. So, we’ve already started juicing. We’re shooting for three tall glasses a day: Cabbage, Kale, Carrots, Celery, turnips, beets etc.. And, we always throw an apple in too so that it almost tastes like junk food.

The Doctor’s plan is multi pronged. It is heavy on nutrition, but also focuses on Eddie’s alignment. X-rays show compacted areas in Eddie’s spine that are connected to nerves that run to his stomach and areas of digestion. It stands to reason that lightening the pressure on these nerves would only serve to improve the situation. Okay, sounds reasonable.

Of greater concern is Eddie’s gut. I think I can finally explain this to myself so that I understand. It’s only taken 5 or 6 years. I’m smarter than most. The Doctor’s theory (and we know this is just a theory) is that Eddie’s gut is full of holes in all the wrong places. After years of hard core antibiotics, I’m not inclined to argue. You do NOT want what is sitting in your gut to escape into your blood stream (same argument used for staying away from gut irritating grains). Your immune system will totally freak and over react if it detects toxins in the bloodstream. I guess it would be like if my family members took our kitchen garbage and started throwing the garbage all over the house. When I came home and saw the mess, I would be like the immune system. I would take care of it. My actions to do so would be unpredictable and possibly deadly.

Eddie’s autoimmune response is really straight forward and down-to-business. It’s like, “We gotta get this crap outta hear!” So, he throws up; And he keeps throwing up. He throws up all day, every day. He throws up for weeks and months on end. His body eventually decides that it is literally beginning to starve and he becomes malnourished. Being malnourished creates a whole other set of symptoms and health issues, so that you don’t know what you’re dealing with any more. You can see how complicated this gets.

So, priority one is figuring out how to seal up the gut. We need what is in the gut to stay in the gut, until it has been excused through the proper exit. We hope to have our total game plan laid out by the end of the week. Meanwhile, the juicing has helped. He’s been home from school for close to a month, but now he hopes to be back full time this week. I know they say you just can’t look back, but boy do I wish I would have known about juicing 5 years ago.

I do aim to be really truthful. I always just think things are what they are. What is useful about pretending? Who can learn anything if I’m not honest with myself and with others? For that reason, I am going to tell you the truth. I am nervous and I am scared. Maybe we made a mistake and are flushing precious resources down the drain. We have become almost professionals at straw grasping. But we’re really terrible at it. We keep grasping the wrong straws.

On my way home from work I remembered our new Pastor’s sermon this past Sunday. He reminded us of this story in Exodus. Moses had to keep his arms raised towards the heavens in order for his people to win the battle. Every time he lowered his hands, his people started losing. He raised them again and they would win. Moses had his “friends” help hold his hands up when he got tired.

When I read this before (I apologize for this) it sounded a little ridiculous. Hands up. Hands down. Sounds like nonsense. But I was not seeing the symbolism. Who knows why, it’s not exactly obscure. Moses needed God to win the battle. He had to intentionally stay connected. And, sometimes he just couldn’t do it without his friends. Self sufficiency didn’t work for him. It won’t work for me either. Usually I forget this, because I’m too busy being, you know, self sufficient. I happen to be sure I won’t get very far on my own in my current frightened and insecure state though. So, I’m happy for the reminder to stay connected.

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Hunt for the Cure

eddie day one

I should write a book titled, “What we’ve Done to Try to Save our Child”. That would be a long and boring book, worse than “The Odyssey”.

You’d be reading my book and you’d ask yourself, “Does this book ever end? Do they just keep trying and trying things, even though nothing works?” I’m going to give you a spoiler alert. Yes, they just keep trying things.

To date, here is a list of the things we have tried to heal Eddie. I know there are some that I have forgotten, and possibly a couple I’m too embarrassed to name:

Pediatric Gastroenterologist – Cat Scans, MRI’s, X-Rays, Blood Panels, and Endoscopies (Yes. All plural.)
Well Respected Children’s Hospital – More of all of the above.
Antibiotics. Lots of Antibiotics
Countless other Pharmaceuticals (There is NO way I could remember all of them.)
Supplements (Even more supplements than Pharmaceuticals.)
Acupuncture
Infrared Sauna
Chiropractic
Bio Mat
Herbal Remedies
Homeopathy
Kinesiology
Rife Machine
Essential Oils
Massage
Detox Footbaths
Prayer
Hypnosis
4 Weeks at a special clinic for super sick people in Wichita, KS
Special diets – Elimination diet, Gluten Free, Dairy Free, Sugar Free…
Some crazy trip to Las Vegas Eddie was given a special “scan” that was supposed to tell us how to help him. It was expensive. It didn’t work. A low point in my stupidity and gullibility.

Are you bored with this list? You don’t even know what some of that stuff is, do you? This list at least provides evidence that we are making good on our promise to Eddie. We told him we will never, ever stop trying to help him. And, we haven’t.

Ultimately, we have failed at finding a cure. But, when I look at this list something occurs to me. At some point over the years I have experienced a paradigm shift. It’s true. we are still searching. But, this hunt has helped me learn things I didn’t know before. I now have dozens and dozens of new ways to improve my family’s over all health. And the rest of the family’s health has definitely improved.

We used to wait for symptoms to show up and then take pills to cover up the symptoms. I just don’t like that solution any more. Not when I know what I know. We have many new ways of addressing the root cause and focusing on prevention. Given a redo, I would NOT choose this horror house we’ve been stuck in, but I do get that there have been blessings along the way. I consider this new knowledge a blessing.

Some things on my list I would have laughed at 10 years ago. Hypnosis? Who actually believes that is real? Can you believe that I’d actually move that one towards the top of the list. It made a difference that we could see. That’s a lot more than I can say for the gazillion supplements and medications Eddie has taken over the years.

As of this week, we will be adding something new to our list, and we thought we’d ask you to join us for this journey. Having you along will make it more fun. It does get lonely. We have seen a new Doctor who has a plan (Gosh, you know I love a plan.)

Scott and I debated the investment for a while. I told the Doctor, “what makes you think you can help Eddie? We have tried so many things.”

The Doctor asked, “Has anything you’ve tried worked?” Busted. I knew then we were just pretending to object. Scott and I agree that today, tomorrow or 10 years from now, if there is a tiny, eensy, weensy percentage of a chance that something will make Eddie completely well, that’s some gambling we’re willing to do. Parents of sick kids don’t care about the odds, they just care about having hope. Yes. We know our list is worth an addition to our home, or two years salary. But, what parent wouldn’t trade a nice new living room for their child’s future? No parents I know.

This Doctor will have us juicing among a lot of other things. I apologize. There may not be any produce at the grocery store when you go shopping. I think I bought it all. After two days of juicing, Eddie is actually smiling and talking again. That may be worth the investment right there. I guess when you have not been able to keep any food inside you for a month, your body thinks, “Hey, I think I might actually be starving here.” Bodies don’t like starving. Juicing delivers vitamins and nutrients without all that tricky digestion. Eddie’s stomach is extremely uncooperative with digestion, like just completely bull headed.

So, if we learn nothing else from this new experiment, we have learned that juicing helps Eddie. Not the answer, but helpful. We will remain optimistic, yet realistic. We look forward to sharing this journey with you.

No Joke

Disclaimer: I’m all out of silly today. If you need a laugh, I apologize. You could try back another day. You’re sweet for stopping by here.

Usually my brain thinks in terms of jokes. I don’t try to make jokes up. They are just there for the taking. I don’t fight it. I’m not feeling very jokey lately though. Eddie is relapsing, which tends to empty my mind of wit. I just don’t think it’s very funny.

You know how some people become reflective and more apt to cry out to God during trials? You do? Well, I’m not one of those people.

Under duress, I become less human, more robotic. I am rather uninspired and more focused on survival. I know this because I have had lots of practice. I also learned a long time ago to keep praying and reading Scripture, even though I wasn’t feelin’ it. The truth is, praying and reading Scripture changes nothing…that I can see.

I used to look to God to make my life comfortable. I wanted an explanation for all this misery on Earth. I never found the happy answer I wanted. But, what part of the Bible ever led me to believe in happy endings? Was it the plague of locusts, the slaying of first born sons, or Jesus’ violent death on the cross? My troubles are a trip to Disneyland in comparison. If I was in charge of naming the Bible, I would have titled it, “Life Goes Wrong”.

But see, here’s where my faith seems like common sense to me. God devoted the entire Bible to telling me that there is nothing on Earth that won’t eventually disappoint, degenerate and cease to live. He’s been telling us humans since time began to grab on to something powerful and unchanging instead, Him. This acceptance and faith is what both anchors me down and keeps me pliable all at once. That’s a strong combination and strength is what I need right now. No joke.

Pets

reggie

If you’re not a dog person, then you may want to scroll on by. Or, you could stick around and hope our little talk will help to thaw your cold and frozen heart.

My family did not have pets growing up. Well, except for that cat, “Twinkie”. He was cute, but he had bad manners. He used to try to kill our friends when they came over; pouncing on them, with his claws out, from a dark corner and other silly antics like that. That wasn’t actually very cute. Plus, mom was allergic. So, “Twinkie” didn’t last very long at our house.

I remember at Church Camp my favorite activity was the Mini Farm. We could milk cows, pet lambs, hold kitties. I loved it. I don’t know why it never occurred to me then to ask for a pet. In fact, I never factored a pet into my life’s equation, even as an adult. Pets with their cost, hair and smell just did not seem very practical.

When Eddie was in eighth grade, he missed most of that year of school due to illness. We tried to do eighth grade again the next year, but he missed most of that year as well (oh, let’s not get in to all that again). I had a good friend who kept reminding me that pets were good for healing. Really? Another living being that needs to be fed and given my time, love and attention? I was pretty sure I was tapped out. At that time I thought I actually may be a member of the walking dead. Do you know what the difference is between a zombie and a mother of a chronically ill child? Nothing. So, how is a zombie supposed to care for a pet? Have you thought of that? Sometimes I’m just more of a critical thinker than other people.

Then, one day I was talking to my sister. I was really, really sad. My sister announced that Eddie needed a dog. She said he needed a little Cavalier King Charles Spaniel, because those dogs are just pure sweetness wrapped in fur. For the first time in 39 years, I thought, “Yes. We do need a dog.” Then I said I’d better ask Scott.

Scott is one of these guys that will make a list of pros and cons before he purchases a pack of gum. The decisions he makes are calculated and well thought out. When I asked him about a dog, he immediately said, “You’re right. Eddie needs a dog.”

So, we got a dog. Our kids tell us that the day we picked Reggie Cubby Patrick Smith (we couldn’t decide on a name) up, was the best day of their lives. And, what the heck was I thinking by not having a dog all those years, anyway??!!! Dogs are proof that it is the simple things in life that make it the most meaningful.

Reggie has more than held up his end of the bargain too. When the only thing Eddie could do was lay on the couch, Reggie’s warm little body could always be found under the blanket, curled up next to him. Reggie was Eddie’s constant companion when Eddie was home alone. Plus, Eddie’s job was to let Reggie out while we were at work and school. At that point, Eddie was not able to participate in any of the things kids his age normally do. Have you noticed that kids need things to do? They need responsibilities and some sort of form or structure to the day. Even though letting Reggie out was a bit of a physical challenge for Eddie at the time, I remember thinking this act was part of what kept Eddie going. Reggie needed him.

It’s been almost three years and the novelty of Reggie and his preciousness (that’s a word, right?) has not worn off. I don’t think it ever will. More good news is that Eddie has learned to channel Reggie. He speaks for Reggie often in a goofy Reggie voice. Now we always know what Reggie’s thinking. Let’s just say that Reggie won’t be getting in to Gifted and Talented Doggy classes anytime soon, but he does loves his people. By “his” people, I mean things that take in oxygen, things that don’t, inanimate objects, cartoons…they’re all his favorite. He also loves to party and have a good time. We love him so much.

What’s my excuse?

Maria-Kang

Did you read about this? People are TICKED OFF at this lady, Maria Kang. She had three babies in three years and kept her fitness model body. The worst part is that now she’s bragging about it and rubbing it in our faces! This thing went viral, and it’s been all over the news.

This woman wants to know what my excuse is for not looking like her. Well, I can give you more than one excuse, lady. Hold on tight, because you are about to be taught a lesson. Here are just 5 excuses why I don’t look like you. I could probably think of dozens more:

1. I was going to train for a marathon, but then I pulled a hammy. Then I forgot I meant to train for a marathon. I suppose you think it’s okay to run injured?

2. I’m shy. I don’t want to look like a fitness model. People will stare.

3. I like doing 200 push before work in the morning. After my first set of ten push ups I remember I have to check Facebook. I get short on time, but know I can do the other 190 later. Like at my son’s football game.

4. Being hungry hurts my tummy.

5. It’s super hard.

No doubt my list may prove to be embarrassing for this young woman. But, it should put this whole thing to rest. Walk in my shoes for just one day, lady! Just. One. Day.

Sympathy

When I was a little girl I got sick a lot. I have some pretty vivid memories of laying in the near dark, feverish, head buzzing, watching the rest of the family move about, conducting their normal daily activities. You can believe I felt plenty sorry for myself.

My parents were not the “make your kids suck-it-up” type parents. I know that now because my husband had those kind of parents. His parents were the, “Oh, you have a 6 inch, bleeding gash on your leg? Here’s a teaspoon of Robitussin. Now, go to school,” type of parents.

Scott’s parents did not let silly things like fevers, vomiting or blood stop them from showing up and getting the job done. They had a name for their famous family cure-all. It was a special homemade remedy called, “Ignore it and it’ll go away.” Truly a stellar parental move. My husband and his siblings are tough as nails. As adults they miss work about once a decade.

Meanwhile, my mom was bringing me trays of food in bed, running me to the Doctor, making ice rings for my throat and mixing sugar with crushed aspirin to make it more palatable. Pa was always good for some sympathy too. I’m sorry guys (mom and dad), but this seems like a good time to tell you that sometimes I made stuff up. I’ve been feeling pretty badly about that for the last 30 years or so. I wouldn’t have done it, except, well…it’s complicated. It’s just that being served hot chocolate and peanut butter toast on a tray in front of the TV seemed more fun than going school. I knew you’d understand.

Scott and I got married and there’s your episode of “Two Worlds Colliding”. I remember when we were dating and I had a nasty cough and a fever. I figured once he saw how awful I looked and felt, he’d feel really sorry for me, and that would be okay too. Well, he wasn’t exactly sympathetic. Unless acting slightly irritated is a sign of sympathy.

Scott is smart though, and he tries to make me happy. Over the years he has learned how to imitate the socially acceptable behavior of a husband with a sick wife. If I’m out of commission he will open the bedroom door a crack, stick his head in for a moment and ask in a robotic voice, “Are you okay? Do you need anything”? I almost get my answer out too before the door is quietly shut and he disappears until the fever is gone.

Having a son with a chronic illness has provided us with ample opportunities to express these learned behaviors. Scott’s been doing this mind of matter thing since before it was cool. And I am super good at making a fuss over sick people (especially if they’re my kids). Hopefully, throwing what we both know in the same pot will be just the right mix. Or, there’s a decent chance we could be doing it all wrong. But, I have at least learned that there are times you just need a little extra attention; other times you need to be told to take a teaspoon of Robitussin and get your butt to school.

Addiction

choc chip cookies

I know. I know. I need some serious help in the food photography department. Another day. My family and I are busy working through some serious issues. We are searching for a good family therapist, one who deals with chocolate dependency and all the brokenness and anguish that goes along with it. We have a household of five raging addicts.

You know what I’m talking about. “Where’d the stinkin’ chocolate chips go? I just bought a jumbo bag at Costco this week.” Then the blame game starts which leads to shame, guilt and a need to soothe yourself…with more chocolate chips.

This week I discovered someone had hidden the bag of chocolate chips in the bathroom closet. Underneath my feminine products. That was actually brilliant. Seriously, credit where credit is due. No self-respecting male is going to eat chocolate that has been adjacent to that stuff, unless you’re addicted.

When you are hungry for something sweet in our house, there is absolutely nothing packaged that you can open quickly and shove down your pie hole. Unless you wanna call the skins on apples packaging. We always have plenty of those to rip through. So, I do buy chocolate chips and I do make grain free cookies. Chocolate chips are not Paleo. And, that’s why I would appreciate you not calling the Paleo police.

I make huge batches of chocolate chip cookies on Saturday morning. If each family member ate about one or two a day, the cookies could last the whole week. When they’re gone that same evening, you’re left with five strung out people, wondering when they’re gonna get their next fix. If you notice any of us are little jumpy during the week, now you know why.

I actually do have a grain free chocolate chip cookie recipe that I made up. One of Zeke’s non Paleo friends said they were the best cookies he’s ever had, and I have had other folks ask me for the recipe (Again, by “folks”, I mean my mom). These cookies are chewy and crispy all at once. You can definitely taste the coconut too. So, if you don’t like coconut, They’re not for you.

I’m gonna break my own rule (something I try NOT to do more than a few times a day) and give the recipe to you now. I have double checked the measurements, I really do think I have them right. But, then again, I may have them wrong.

Our family has to substitute the eggs, because Eddie is allergic to egg whites. Substituting eggs in your baking is a real, honest-to-goodness-pain-in-the-butt, but people do seem to prefer the egg free version of this cookie over the ones with eggs.

If these do not turn out, I’m gonna ask you to keep it to yourself. I prefer only positive comments, and things that make me sound good. Here it goes:

*These cookies cannot be called “Paleo”. They are a gluten-free treat. And, they are delicious.

1 cup butter (softened)
1/2 cup coconut oil (melted)
1 cup honey
1 cup coconut sugar (You can use brown sugar if you’re okay with that)
3 cups almond flour
1 cup tapioca flour
1/4 cup coconut flour
2 tsp vanilla
2 tsp baking powder
2 tsp salt
2 tsp baking soda
1 tsp xanthum gum powder
2 TBS ground chia seeds (grind in coffee grinder)
1/4 cup hot water (If you prefer, use 4 eggs instead of chia seeds and water)
2 cups rice crispies (not paleo, but gluten free, so let’s pretend they’re okay)
1 cup shredded coconut
1 bag of Dark Chocolate chips

Directions:

Preheat oven to 350 degrees

1. Put the ground chia seeds in hot water and let sit while you do step two.
2. Mix the butter, coconut oil, honey and sugar together.
3. Add your chia seed mixture and vanilla. Stir.
4. Add dry, powder ingredients
5. Add coconut, Rice Crispies and Dark Chocolate chips
6. Drop by spoonfuls on pan. I put wax paper down for no mess. Give the cookies their distance, they’ll spread. Also, I shape mine into balls and flatten a bit so they’re all pretty.
7. Bake for 12 minutes
8. Feed your addiction

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