My Crohn's is Out to Kill Me

And I'm sure my Doctor is in on the Plot

Gibson knows exactly how I feel right now about my Crohn's and the doctor visits that result from flares up.  Actually he probably doesn't, but this photo of him represents how I feel on the inside about the Crohn's flaring up.

Depressed. (and just to clarify, should my readers start to worry about Gibson's sad state of affairs, he wants to live in the dog park. I think if we bought a house next door with a puppy gate and allowed him to come and go as he pleased- he would not be so pitiful appearing.)

Last summer or so the Crohn's started to flare. I wasn't completely surprised, as it seems like after my hormones settle back from my pregnancies and breastfeeding, the Crohn's decides to raise it's ugly head. But since I did so well with the Crohn's during my most recent pregnancy and I had over a year after birth without any major issues I was hoping that it wouldn't change. 

And then we started some serious weaning and I think the resulting hormones changes screwed me. That and I think my sugar addiction really plays a bigger part in the Crohn's than I realized, but more on that in a later blog.

For months I tried to get things under control, to no avail. My trips to the bathroom became more frequent, more painful, and more uncontrollable. There is nothing like being in your thirties and having little or no control over bodily functions. 

Since I didn't want a repeat of my last flare up, which nearly killed me. And when I say, nearly killed me, I seriously mean I almost DIED. I was dying. And dying is not a state of being I wish to be in anytime soon.

I decided it was time to see a GI doctor. 

And because there is only one small clinic of GI doctors for the entire Western half of our state, there was nearly a three month wait to get in and see...

the PA? 

All right. I will take whatever appointment I can get and in the meanwhile, I will watch my flare up get worse.

A long wait later...I finally had my first appointment with a PA that I had before in their urgent care. Great PA in urgent care. Had just moved to the GI department and had spent the night reading my case file. Also did not know a lot about Crohn's yet.

I have to give her credit there, learning about my case before the appt. I'm sure I didn't make interesting reading. Anyone want help getting to sleep, read my tome of medical records. It's a dry and boring read, except for the parts where patient tends to not listen to the doctors.Those parts are exciting. 

Anyway, I wanted some steroids. Entocort. To be exact. 

But first, we have to run tests.

And tests. And more tests. Did I tell you that doctors like to order tests? 

Bloodwork. Colonscopy. And MRI with barium. (Mmm, two containers of barium please. Can I take that shit home and drink it for fun? It's just so good and tasty. Oh, and I hope I don't glow in the dark afterwards.) 

So two weeks to wait for a scope. If you haven't had a camera stuck up your ass before, you should definitely try it. First the process of having to empty your bowels by drinking a gallon of chemicals- which will plug up your kitchen sink should you spit it out) and then having to spend hours and hours on the toilet- is an experience no one should miss. 

And then having to go to the clinic with a raw and sore ass and allowing complete strangers to run a camera up your intestines is worthy of a blog. Just kidding, I will not go into details and I have to say all my nurses were caring and compassionate, but there is a vulnerability to having medical procedures done, regardless of how well taken care of you are. Obviously, nurses with empathy make the experience bearable. 

And Hero Hottie was waiting to bust me out of there as soon as I was awake.

The colonscopy did not go well. The doctor couldn't get pass a section of intestine because of how swollen it was. 

Bummer. 

Can I put my clothes on now? Hospital gowns just aren't stylish. 

Now, you need a MRI with barium so we can see the rest of your intestines. 

Another two weeks of waiting for an appointment. 

Then another two weeks waiting for a follow up appointment with the...PA?

With the PA again? Not even the doctor? 

And the paperwork the one doctor sent me said something totally different than what the other doctor told the PA was wrong with my large intestine. Off the same MRI results. Really? 

So here I am weeks and months into a flare without medication and I'm finally at the appointment where I should get something. 

And the doctor and I have a mild disagreement, through the PA, over how to treat the Crohn's. She wants me to go right onto biologics and I'm saying...

NO. 

But there are limited options on how to treat Crohn's. The best we can offer you are drugs with a list of side effects that include but aren't limited to...

deadly allergic reactions

cancer

fatal fungal infections

TB

fatal brain infections

suppressed immune system

Mmm. Death and cancer. Plus thousands a dollars a treatment.

I don't know if I ever mentioned this but I hate Crohn's. 

And of course I have to ask myself, perhaps these are my best options. Perhaps I just need to do the biologics and hope for the best. I certainty don't need the Crohn's flaring into complications like I had last time.

Fistulas. Hell. Massive infection. Hell. 

But I don't react well to most medicines, do I really think I'm going to respond well to a class of medications that have more people complaining on Crohn's forums than touting praises? No. 

So I state that I want steroids, since that has worked in the past. If those don't work, than we can discuss other options.

The doctor has told the PA to say NO to everything except the biologics. She wants me on biologics. The PA can't just prescribe me the steroids, she has to have permission and so she will have to talk to the doctor when she's back in the clinic and call me.

Another two days and I still can't have anything to treat the Crohn's. There is nothing like waiting months to treat a flare up.

Two days later, and the PA is on the phone. The doctor will agree to prednisone if I agree to another scope in three months, followed by biologics. 

I want Entocort. It worked so well for me during my last flare up.

The PA puts me on hold to talk to the doctor who is in the same room, gets back on the phone, "Nope, she won't give you the Entocort." 

A mild disagreement occurs, in which the PA is working the middle, instead of the doctor getting on the phone with me and discussing the issues with me. 

But the doctor wouldn't bulge. A huge dose of prednisone with all it's glorious side effects. 

Crap. 

Why wouldn't the doctor prescribe me a drug that has worked for me in the past? Wouldn't you give a patient something that has worked? That has put their Crohn's in remission before? Wouldn't you at least try it? 

Instead, because I'm desperate for something to treat the flare, I start the heavy doses of steroids, watching my weight balloon, my face turn into a fat, jelly mess of water retention and puffiness, and noticing that it isn't doing much for the Crohn's symptoms. 

In the meantime I make an appointment with a different GI doctor that I have had in the past and tends to listen to my concerns better. It will only take three months to see him.

In the meantime, I have another scope and more bloodwork and a flare up that isn't correcting itself. 

All before I run out of insurance at the end of the month, because I also found out I no longer qualify for disability, even though I'm in a major flare-up. That seems ironic. 

That also means a huge cut in income every month.

Nothing like stress to make Crohn's worse. 

I'm pretty sure a beach in New Zealand would be the perfect cure. Or at least it should be. 

But because I can't end on such a note of negativity and doom- it's a fault of mine to be positive most of the time. On the outside. We can hide sadness on the inside- I think I hide my sadness in my gut.

Let's talk about what toddlers do? Hide their clay covered lizards under their crackers on their dinner plate. I nearly threw them out because I didn't see them at first. What thoughts go through a toddler's head as they hide toys under their food? I wish I knew.

When You Don't Even Have Time For Your Life to Flash Before Your Eyes

Or How Many Thoughts Can Actually Occur in the 

Time It Takes for Your Minivan to be Totaled

Gratitude. Yep, that's the emotion I feel when I look at this mangled mess of my minivan. And not just a light dusting of the stuff - of gratitude. No, I feel a deep expansion of it in my chest, pressing on my breath and forcing me to take a deep breath- of gratitude. 

Not for the wrecked vehicle. The amount of problems that has caused me is just one more headache in my life lately, especially when I'm down to half a house still, I'm experiencing a major Crohn's flare-up and my income is wacky.

Being down half a house can be frustrating like the girls are living in the 'dorm room'- which is all their mattresses on the bedroom floor. Half the time they hate it- no privacy, their personal items packed in boxes and stored in the garage, no where to escape from the Baby Blueberry who thinks that sisters should play with her all the time. And forget the state of the mattresses, they seem to think that the mattresses are giant trampolines.  

      But they have gratitude too. They realize that they still have a house. They have heat. A roof over their head. So these things are inconvenient- and frustrating. And Baby Blueberry still hasn't potty trained- it stopped the day she watched the toilet explode with poopy water but it will happen. 

But I don't hear a lot of complaints from them. 

But onto the minivan. 

I was driving Bean to dance. Abu was already at dance and Blueberry was in the back in her car seat. The roads were nasty that night but let me back up a little bit further... 

The night before I had the weirdest dream.  This old woman gave me three silver charm bracelets that had been blessed to protect my girls. I woke up feeling a bit unnerved. What did my girls need protection from? And does a bracelet given in a dream really provide any sort of blessing?

That morning my father-in-law worried about the state of the tires on the van, called and said he was going to take the minivan that night after dance and have snow tires put on it. Since the bald tires weren't working great on ice and snow, I agreed gratefully with his suggestion. But in a few hours, I think bald tires actually worked in our favor...

On the way home from dropping off Abu to dance all I could think about was being in a car accident. My thoughts were getting quite chaotic with what am I going to do tomorrow without a car and I have interviews to get too and kids to drop off to dance. The thoughts of having a car accident were heavy but I assumed it was because the roads were nasty and people were driving stupid. - no, seriously, people if the roads are icy, slow the hell down. But I swear, people really don't understand physics. If that is one subject we need to spend more time on in school- it's physics. Not crazy, abstract, concepts they refer to on The Big Bang Theory physics- but simple laws of motions. 

Back to the story....I told Bean we needed to leave a bit early for dance, I didn't want to be in a hurry. And while I drove I was super aware, trying to avoid the sinking we're-going-to-get-a-car-accident- feeling. 

We stopped at one of the main intersections, in the turning lane, waiting our turn. As we have done a million times before, as we have done since. 

When this oncoming truck decides to run the red and plow into the oncoming car...right in front of us. In less than a second, the pick up truck hits the oncoming car- no breaks applied- ricochets off of them, and hits us head-on in the turning lane. 

There is no time to do anything except realize that we are going to be hit and hopefully it doesn't hurt too much. I let my foot off the brake, I wasn't going to fight against the force of that beast coming at us, and with bare tires, when the pick-up hit us, it slams us back into our seats and we slid about 10 feet back and six feet to the right, luckily into a buffer lane between the turning lane and the other lanes. So we avoid hitting anyone behind us. 

There is nothing like the image of a huge ass truck bumper coming right for your vehicle, aimed towards the passenger side with one of your babies in the passenger seat, knowing it's going to hit and there's nothing you can do. 

NOTHING. There wasn't time to move the vehicle. There wasn't time to throw it in reverse, which wasn't much of an option, because there was cars behind us. 

In less than 2 seconds you just have time to know. To know that events put into place are about to happen and you hope or PRAY that it will all be okay when that 2 seconds is over. 

Abu asked Bean later, "Did your life flash before your lives, like in the movies?" 

Bean answered, "No, there wasn't even time." 

Luckily, when she realized we were going to be hit, she took a deep breath, relaxed and allowed the motion of the crash to move through her. She didn't brace, she didn't tense and all those talks of physics I had with her and car accidents and explaining that sometimes bracing can be the worse thing you can do, actually clicked and she was fine.

The first thing I did was check my girls. Bean was okay. Blueberry was okay. Quiet, not even crying.

 But in a few moments she says from the backseat,  "That was scary. Oh, my God." 

And then after I realized my girls were okay. I was okay. We walked away without even whiplash. And even though I realized too that my minivan was totaled. Front frame bent into the engine, radiator destroyed, bumper damaged, alignment screwy...all I could feel was gratitude. 

My girls were okay. 

The minivan I can replace. I miss my minivan but it's totally, completely 100 percent replaceable. 

My girls were okay though. More than okay, they weren't even hurt. 

So yes, losing our main car has been a pain in the ass. Especially when the other driver didn't have insurance and due to my own dumb ass I only had liability on my van. (When we were first married we could only afford liability on our vehicles and our vehicles weren't worth much. When we got the van, I should have switched it but I didn't even think about it. Lesson learned.)

But if the other driver had insurance, than I would at least be getting a check to help replace my vehicle from their insurance company instead I have to take them to small claims court. Which seems like a waste of time, because if they weren't paying insurance...

But with all that being said...gratitude. 

Baby and Puppy Strike Again

Edible Ornaments are Just Snacks Hanging from the Christmas Tree

Right before Christmas, Grandma had Abu and Blueberry over and they made ornaments with cupcake glass ornaments and sugar cones. They were beautiful!

And then they went missing.

I should have remembered that Baby Blueberry really likes to munch on sugar cones. 

Gibson goes without saying. I'm going to hang food on a Christmas tree, which by the way...he loves Christmas trees. I am bringing the outdoors inside...for him. He's sure we bring the tree in just for him. His favorite thing to do with a Christmas tree (and thank goodness it's not to pee on it) he loves to drink the water. Absolutely will drink all the water from the stand, everyday. 

No wonder my tree dried out so quickly. 

Now, of course, I know this crazy dog of mine. I was well aware that if we thought we would put food on the tree it would disappear. 

So we put the ornaments up high. 

And in a few days, this is what I found on the ground. 

Mmm, suspicious. The sugar cone did not fall off by itself.

And then a few days later...I look up to watch a very quiet Blueberry sneaking over towards the tree.

Sneaking. On tip toes. Thinking I'm not watching her. 

But I do watch her and catch her in action. 

Eating the sugar cones!

She ignores me and my camera, as if I can't see her eating the Christmas ornament. Mmm, edible Christmas ornaments. It's a brilliant idea! 

I tell her she can't eat the ornaments and she's vastly disappointed. And as I'm dragging her away from the tree, Gibson, who has now realized there is another ornament at his level, decides to finish off the cone. 

So Baby and Puppy strike again. Eating Christmas tree ornaments right from the tree. It was a delicious Christmas! 

And Gibson thinks we are just the greatest people in the whole world: we brought a pine tree in the house, we gave him pine tree flavored water (no, I did not try it- it might be the next big thing too, he could be onto something) and we put edible ornaments on the tree! 

Next year he's hoping for bones, hams, and whole chickens hanging from the branches! 

And I'm sure Baby Blueberry would help eat them too.