Wednesday, March 11, 2015

Crohn's, Sugar Addiction and Avoiding Humira

Week One without Sugar

 

Day Before the Grand Sugar Give-up: I indulge in not one - but two large coconut milk French vanilla lattes. This is on top of baked goods and a decent size serving of pasta.  There's nothing like overindulging before denying yourself. Hmmm, I have a feeling I'm setting myself up for failure if I have to consume vast qualities of carbs and sugar before giving them up. Am I too attached?


So in the last three weeks I have had the pleasure of undergoing another colonoscopy, more bloodwork, and an appointment with my regular GI doctor, who I had piled expectations onto, only to come out of the clinic feeling hopelessly depressed and unheard. 

The scope showed that inflammation was down considerably- due to the steroids. Which I'm about done with prednisone, I wanted Entocort because it has way less side effects for me and for whatever reason Dr. V, we'll call her, would not prescribe them for me. She was willing to write a prescription for everything and anything else but not what I asked for. I'm not sure why. But the side effects are driving me insane. My face is so puffy and moon faced, I don't even want to leave the house.

The scope also showed I had a mass of gross looking tissue all piled up in the area between my large and small intestine, which she snipped for a biopsy. This caused quite a bit of bleeding and I was about ready to go back into the doctor that night, but luckily it stopped. But the procedure this time wore me out and my body felt exhausted- on the inside. Deep inside. 

My blood work was showing improvements in hormone levels, iron levels, and inflammation markers were vastly improved- almost normal. But again, due to the steroids- what happens when I go off the prednisone? 

I had my appointment with Dr. M, we'll call him, and right away I knew he had talked to the other doctor and had already agreed on a plan for care, forget what I want. He wants me on the biologics, - end of story. I mentioned all my concerns and this is how the conversation went. 

"What about the side effects? Cancer?" I asked. 

"We've only seen cancer in a certain age bracket, young men between 20-30, also taking another immunosuppressant. Doesn't effect other age groups." He said.

What? "Well, I've been on Crohn's forums, chat rooms. And there are a lot of complaints about biologics. Concerns like allergic reactions?"

"Oh, yes that. Well, here's the deal. Once you're on it, you can't go off. If you go off, your body will form antibodies against it and yes, you'll be allergic to it and won't be able to take it." 

Mmm, so my body will hate this drug so much, it wants to reject it as soon as it can? I'm feeling better already.

"What about the other side effects people complain about?" I ask, listing them- cancer, fatal fungal infections, an inability to fight infections, even just colds and flus. 

"You shouldn't be on the forums. They're just full of desperate people that the drug hasn't worked for- the people it does work for aren't on there." 

So ignore other people's experiences with it. Don't address my concerns.

"What about liver damage?" I ask, even though he's getting annoyed at my questions.

"Only a hand full of patients had died from liver damage while taking it." He assures me. 

I sigh. Aloud. Staring at him. I'm not feeling any more confident about taking these medications. It's my past history. I react to everything. My grandma reacts to everything. It's in the genes. I'm not sure why. Perhaps it has to do with my messed up immune system. 

"In your professional experience, how many of your patients do you feel like benefit from this medication?" I ask.

He pauses for a second and then answers. "I would say 7 out of 10 see good results."

I nod, it's not perfect odds but better than I thought. Then he keeps talking. "Well, at least 6 out of 10 of my patients benefit from it."

All right, my odds just went down. To almost 50 percent. And why is he changing his statistics? 

Then we start talking cost. How much is this ghastly drug?

Only around $12000 a year. For the rest of your life. 

I think I would have swoon right there if I wasn't feeling so numb by this point. I certainty was biting the inside of my cheek to keep from crying. 

"How much?" I choke out. 

"Well, it's a shot at home, twice a month and each shot is at least $500." This is for Humira. Since I lost disability, I have no insurance. If I get on Hero Hottie's plan, this is the drug I am required by the insurance to try first out of all the biologics. So now my drug choices are being dictated to me by a paper pusher. 

"I have a $5000 deductible with my husband's insurance." I said, trying to wrap my mind around such an expensive medication. 

"Well, that's better than $12000." The doctor assures me with a smile. 

No, it's not. Not in my financial world. 

I agree to  blood work to make sure I don't have TB or hepatitis, because apparently if I do and I take a biologic, it can kill me. And in a month the nurse is going to call me and see what I've decided. This gives me time to figure out insurance, finances and such. I can also apply for the financial aid from the drug company.

But how can I commit to a drug for a lifetime? At that expense. Damn colon. It needs to behave.

So I think. And I ponder. And I cry. I cry in lattes, and glasses of wine, and I scream at God for a burning bush. 

And then I come upon the autoimmune paleo diet, that has been used successfully by some patients with Crohn's. No potatoes, no tomatoes, no sugar, no artificial anything, no grains and no lattes. 

And I think WHAT THE HELL, WHY NOT? 

The odds have to be just as good as the 6ish patients out of 10 or so, I'm the doctor making statistics up on the spot, chances anyway. I go to the forums again, sorry doc, and people's reactions to the diet are mixed. Some are on it and no drugs. Some have mixed it with drugs and find both work really well for them. And some said they couldn't stay away from the no-no list and the diet didn't work. 

Day One: I have bought garden worth of groceries for the week. Salad, veggies, some fruit, and sweet potatoes. When I bake potatoes for the family, I'll just throw a sweet potato in there for me. I'm ready to go. And the meals are delicious. 

Day Two: I dream about coffee and creamer, and wake up with a furious urge to drive to the store and buy some almond milk French vanilla creamer and drink it straight from the carton. Never mind it has 4 tsp of sugar for every serving. I NEED some sugar. I make some peppermint tea instead, say some prayers, and remind myself that I'm trying to find a more natural way to treat the Crohn's before I commit to, what I feel like is a drug of last resort. 

I start really reading labels. Calculating the amount of sugar in what I'm eating. What I'm feeding my family and I'm shocked. No wonder the sugar content is hidden in plain sight by listing it as grams instead of teaspoons or tablespoons. 4 grams of sugar is equal to 1 tsp.
The bottle of BBQ sauce I was using in the sloppy joes meal- I end up feeding my family 52 tsps. - yes, 52 teaspoons of sugar in one meal.
Yogurt: 4 -6 teaspoons of sugar per container
ketchup: 1 tsp sugar per 1 tablespoon

Wow, the sugar was adding up fast. No wonder I was addicted. No wonder my family was addicted to cookies and ice cream. Sugar just feeds on more sugar. 

Day Three: I'm taking a shower and using my pomegranate face scrub and it smells so sweet I start to think about eating it. Yes, eating my face scrub- in the shower. Okay, I just might be going crazy.
But not to get too personal, the bathroom part of the Crohn's is almost normal. What? I don't even know what this is suppose to be- but I don't run to the bathroom ten times a day and even the kids notice that I'm not desperately hurrying off to the bathroom in a madness of worry and frustration.

The doctor writes that "patient seems to understand" what he is telling her, in my medical records. I feel vaguely insulted, because I do understand- I'm just not happy with my options. I decide a third opinion in a big city might be worth the money and start to research for a doctor with a holistic approach to treating the Crohn's. 

Day Four: Baby Blueberry has kept me up and I have to function without coffee. But I can't, so I drink some. My Mom bakes cookies and I have three. But I pay later for my cheating. Perhaps the diet is working. I find some paleo cookies in the store made with almond flour and very, very little sugar. I buy one because they have chocolate in them. They're surprisingly good, if not overly sweet. And they settle well on the gut.

Day Five: Still find myself thinking about coffee creamer and lattes at odd points during the day. Suddenly I'm having trouble with my emotions. There is a lot of stress going on in my life at the moment, and without even realizing it- before I was handling my emotions by drinking more sugary creamer. Now I couldn't, and the emotions were much sharper, more painful, like barbs on a wire. I knew I had a habit to eat my emotions but I didn't realize it was this bad. 

I doubt my plan. What if I'm wrong and the doctor is right? What if what I need to do is take the medication and call it good. I have a dream that I'm looking at things from the wrong perceptive, but that doesn't tell me what is the wrong way. 

Day 6: I have never had this much control, even when I was in remissions. I'm starting to lose weight, which I desperately needed to do. The steroids had messed with my appetite and I had gained 5 pounds from taking them, except I was already overweight to begin with. Pasta and rice is starting to lose their loudness. I'm not even missing them. The lattes, well, that's another story. Even Baby Blueberry isn't consuming too many cookies.

I firmly decide that I'm experiencing something totally different in the state of my Crohn's on this diet and decide that I will continue with it, until either it's not working, or I get a third opinion and they can reassure me why taking the biologics would be my best bet. So I haven't decided against any drugs- I just going to try something else first. Besides, there is the fiancial aspect of the drugs, which I haven't figured out yet anyway. 

Day 7: The week was worse than I thought and better than I thought. I wonder how I can be so addicted to a food product. Because sugar is addicting. I'm still craving creamer- for the sweetness. But perhaps sugar is bad for you- it is processed and bleached. How can putting a bleached product in your body be good for you?


I decide to give it another week and see what happens. And I buy a bouquet of flowers for the kitchen instead of something sugary to snack on as a treat after grocery shopping.They are bright and beautiful and haven't gone to my thighs.

Wednesday, March 4, 2015

Do Dogs Remember Yesterday?

Heck, do I remember yesterday? I can't even find my car keys.



In an article in Psychology Today, the author, Ira Hyman, Jr., Ph.D wrote about a lack of episodic memory in dogs and other animals. The article, Dogs Don't Remember: Episodic Memory May Distinguish Humans, was published back in 2010 but for some reason was circling around the Internet yesterday- someone must have forgot this was old news.

I found the article interesting, just because I had to disagree with everything he had to say about dogs. And perhaps that comes from the fact that I blog about a dog, so I'm a bit biased.

 Of course Gibson can remember yesterday- he wakes up every morning knowing who I am.

I know Gibson remembers yesterday. I will conduct my own scientific experiment involving
Mr. Gibson to prove it.

First: Take him to the dog park. Now, as soon as we start driving down the road, towards this heavenly place, his body language changes. He starts to frantically sniff out the window, his drooling increases, he starts whining, he lacks self control. Now of course, for disbelievers, you might say he just smells the dog park and his actions are simply a response to the olfactory stimulus that he is receiving-  I know I act the same way when I get to close to a chocolate shop.

But I think he is recalling the smells, remembering the times before that we were there. Experiencing memory.

Second: Let him run around the dog park. Do his doggy thing. The dog park: where the dogs all smell each other's butts- and then your toddler goes home and makes all her toys sniff each other's butts before they play. Oh, boy.

Third: Drag him kicking and pulling away from the car. (Actually, Gibson is fairly good about returning to the car if you start walking towards it- he doesn't want to be left. Hmmm, he is remembering home?)

Fourth: The next morning Mr. Gibson will beg you to take him to the park again. He will run around you in circles, lick your face, whine at the door, and grab his leash. Viola! He remembers yesterday!

Of course, the experiment is hard to prove because when I ask him if he remembers yesterday all he says is, "bark, bark," which translates to "take me to the dog park."


This photo is Gibson after a couple of weeks of bad weather: which means no dog park, no walks, very little outside and yet, he dreams and plans about going to the dog park.  And gets depressed.

The author also goes on to say that dogs don't have memory because when he goes into the yard to play with his dogs they are super excited to see him.Then they get bored. He leaves, returns 10-15 minutes later and they greet him with excitement and joy, like they haven't seen him in forever. His conclusion: they don't remember that he was just in the yard with them.

Mmm, no they remember. They're dogs, which means they experience joy and happiness on levels that we used to when we were little children and it didn't take much for us to experience simple but all encompassing levels of "I'm happy to see you."

What if we all started to greet each other like that, even if we had only been gone for 10-15 minutes? Mmm, okay perhaps not. Business meetings might become awkward with such displays of affections and possible butt sniffing.

 But we could keep the idea in mind- warm smiles of joy really, truly make another person's day.


The other part of the article furthers states that dogs also can't plan particular future events. Dogs can look forward to general future events, like my people should fill my food bowl for dinner but nothing special.

I know this is wrong. Because one day I told Gibson that later we would go to the dog park and then we didn't.

And he didn't let me forget all day. Or the next day. Or the day after that. I had stated a 'particular future event' and he was looking forward to. Planning for it. Probably thinking about all the butts he would sniff. And the squirrels he would chase. And hoping for other dogs to play with.



Maybe I'm just reading human traits into his beastly actions...or maybe he remembers yesterday.

It's a mystery we may never know. But I do know this...he probably knows what the fox says. And that is the question psychologists should be more focused on.


(For readers who don't know, I'm referring to the song, The Fox (What Does the Fox Say) by the band Ylvis. Apparently, they play this song everywhere, including Abu's school dances. I only discovered it today- I know, so far behind on my Internet knowledge. Word of advice though, watch the other videos first before showing to kids. Their song Stonehedge has some suggestive content.

Friday, February 27, 2015

Ode to The Dress, the Internet and DC Toy Collector

Or Why I'm going to Start a youtube about wrapping 

Toys Back Up in Their Boxes





 

Yeah.  The big debate. Is it blue and black? Is it white and gold? Why the hell am I even writing about this?? 

What is wrong with me? 

What is wrong with people? 

Never has there been a time in known, recorded history that the entire world could communicate one-on-one with each other in real, actual time. No pony express. No long trips over the ocean. No pigeons delivering messages on their legs. No fire signals. No morse code. No message in a bottle.

Nope, real time. Instant.

And what do we discuss?

The perceived color of an ugly ass dress. 

But atlas, we have more important things to discuss...

like why and how the hell did DC Toy Collector from youtube make $4.9 million dollars last year unwrapping toys! 

Seriously. Have you watched? 

Umm, well... I have, because I have a confession to make...

Baby Blueberry LOVES her. She loves to watch the pretty fingernails unwrap the toys and play with the toys. 

And at first I thought it was weird that I was allowing my baby to watch some grown woman play with toys on the Internet. (Like really, what am I teaching her?) 

But then I realized that this woman was teaching Baby Blueberry her colors. Because as DC Toy Collector plays with the play-dough and makes the creations, she names the colors. 

And pretty soon, Baby Blueberry is saying the colors out loud along with the mysterious millionaire with the ever-changing fingernails. I'm sure she has them done in a salon- she has the money for it. 

And so this week, we find out that some of the highest paid channels on the Internet are of people unwrapping toys...and playing with them.

Mmmm...now, what does that say about us as a society? But who am I to say anything...because when Baby Blueberry is really fussy and demanding and I'm trying to cook dinner...I let her watch someone else play with toys on the Internet. 

Oh, and one of the other highest paid channels on youtube....stampylonghead  ----which for a while Abu couldn't get enough of. Damn you Minecraft and your league of minions. Now I know how to mine diamonds and avoid creepers. 

I also watched the episode where stampy met Amy- sorry, I can't recall her gamer name. It was a touching video. 

Of course, you have to be proud of stampy- with the money he made- he's definitely not living in his parents' basement- which I always wondered. 

And just to be fair--I'm not putting any youtube channel host down. I'm actually pretty jealous of them. Making that kind of money with their creativity and fearlessness to be different. 

In fact, I think I should start a youtube channel. Bean thinks I should make a channel titled, "crazy middle-aged woman does stupid shit" - So like all teenagers she doesn't mind the parents humiliating themselves- she just rather we filmed it and got rich off it. 

I was leaning towards the channel where I do my nails and wrap toys back up into their packaging. Cool idea, huh? 

But I distract you from what's important...what's the color this puppy?