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.

Medication, Weaning, Nursing, Or how Choices Just Pull on Your Momma Heartstrings

But when she does finally pass out...it doesn't matter where she's at.

Do you know how late a baby can stay up when 

they drink the rest of Dad's coffee?

 

Baby Blueberry and Gibson wrestling. 

The house is quiet except for...hold on, the Baby awakens again, calling for 'Momma'.
     I tell her, "It's night-night. Night-night." I'm trying to keep patience, but sleeping has never been something she has taken too and now that she knows that complete weaning is imminent, she has become even more clingy.
     I pick her up and she whispers, barely opening her eyes, "O-tay. O-tay night- night."
     We nurse for less than five minutes and she has fallen back asleep.

    I think I have become her security blanket. Oh, boy.

   A few months ago we had a well baby check-up where the doctor insisted it was beyond time to wean her, after all she's two.

(Never mind that in other parts of the world nursing until a toddler is between 2 or 3 is completely normal. It's just in the United States where we have this weird thing of - it's okay to show boobs on HBO and on the beach- bikinis barely cover anything, but heaven forbid a Mom discreetly nurses a baby in public.)

  The doctor proceeded to explain how to start that process of letting her cry herself to sleep and it would only take four nights. Baby Blueberry listened intently to every word he had to say.
    Every word.
   Never underestimate the ability and vocabulary of a two year old.
   Ever since then, she has been extra protective and needy of nursing.

 It's the last well baby check-up she goes too.

   I know what's she thinking, "Heck no, Momma is not weaning me." 

  And since I'm weak and can't stand to hear her cry- we haven't completely weaned. She doesn't nurse during the day but only at night.

   And then my stupid-ass Crohn's had to flare up on me. It's been giving me trouble for the last six months and I suppose in the next few weeks I'll write a few blogs about it, but in the meantime my choices are:

    keep nursing and allow the inflammation to get worse

or

wean so I can go on some steroids.

And I suppose I didn't even realize how much this decision was bothering me until I sit down to write a blog, with a million different ideas in my head and this is the thing that bothers me the most.

Weaning. 

 Because it's going to be hard on Blueberry.

Hard on my Momma heart.

For one night we couldn't nurse because of sedative in my blood from one of the procedures I had to agree to and she cried for two hours straight-- ON MY LAP. Of course, I'm half out of it from the sedative lingering in my bloodstream, but it was still tough that no matter what I said, no matter the hugs, no matter the cartoons we put on the television- she wouldn't be comforted.

And Baby Blueberry is such an easy going kid. She hardly ever cries.

But this change...is hard on her.

And I've tried everything...bottles, sippy cups, the promise of a new toy when we're done, telling her she's such a big girl...

She responds by saying, "I'm the BABY."

I think the kid has a little bit of my stubbornness and love for change. I'm sure of it.

A few days left of nursing. Nursing the last baby. From here, it's big girl stuff. And it's time...


In the meantime, last night she drank the rest of Dad's coffee that he forgot and left at the kitchen table.

She was up until almost 1:00 in the morning.

Note to Hero Hottie: Don't leave your coffee out! Or you get to stay up with her next time.

What depth I see in those eyes! 

 

The Case of the Sneaky Parents

Or How a Two Year Old Has Toy Radar

For Blueberry's 2nd birthday we had bought her a collection of toys called Calico Critters. There are many different family sets, ones that look like cats, dogs, mice, beavers, and pandas. She has a phobia about rodents, so we picked the pandas.
       Since she has recently watched the movie, Kung Fu Panda- the main character is a huge, funny panda named Po- when she opens up the package, she hugs it and says, "A family of Pos."
       So when you ask you to explain them to you, she says, "This one is the momma Po, and the Dada Po, and the Baby Po."

A Family of Pos

       At this lovely local toy store downtown, where they actually know us by name, not because we buy much except around birthdays or Christmas time, but we like to go in there and look at the toys- and they encourage such behavior. Who knew a toy store could be so kid friendly. They have a train table set up to play with, and a little grand piano, shopping carts that are Blueberry's size, a funny mirror, and a table with the Calico Critters. That's where Blueberry fell in love with these toys,- ohh, that's why they let you play with the toys. ;-)

The toy store also had a booklet with all the available sets and accessories a parent could grow broke buying and at night, while she was going to bed Blueberry would look through it, always stopping on the page with the red, shiny car and telling me she wants that for her family of Pos.

So for Christmas, Hero Hottie and I already knew we were going to purchase the red, shiny car perfect for a family of Pos for Blueberry.

One day we went in the toy store just to let the kids have some fun and there it was - the red, shiny car and if we bought it today, we would get the $15 roof rack set for FREE.
That's like a fifteen dollar coupon, even though we wouldn't have purchased the roof rack set for her otherwise, but we couldn't pass this opportunity up.

So Hero Hottie makes his way casually over to the cash register, while I distracted the Blueberry by the train set. While he's purchasing the car with the FREE roof rack, Blueberry takes off, running purposely next to him, and looks at him.

Eye contact has been made. But has she seen the gift being wrapped in bright green Christmas paper?

She doesn't slow down so she must not see what we're doing. I take a big sigh of relief.

We exit the store with the most neatly wrapped presents that will be under my tree. Can I take all my presents down here to be wrapped?

But our plan of Sneaky Christmas presents starts to unravel. She keeps touching the boxes and saying, "presents. presents?" Her little eyebrows are arched and she holding back her excitement.

Apparently the kid doesn't know the difference between birthday wrapping paper and Christmas wrapping paper, because all she's seeing are presents.

We hide them in the car and sneak them into the house. Hopefully, out of sight will be out of mind. But chaos breaks out when we enter and I stick them in my room, setting them near the closets, without hiding them.

A few hours later, after supper and the bigger girls are off to bed but little stinker butt, who has the most horrible time going to bed is still up, Hero Hottie and I are talking in the living room, and she's going back and forth between her bedroom and us.

Or so we thought. Nope, the Blueberry was busy doing other things.

She comes into the living room, sets down the unwrapped car on the floor where we're sitting and says, with a big flourish,

"Ta-da"

"What? You unwrapped your Christmas present?"

"Car, Momma. Car for Pos." Her little finger is poking the box, a huge grin on her face.

Hero Hottie and I are laughing so hard. We completely failed as sneaky parents. The little stinker must have known FROM THE STORE, that we had bought the car for Pos. And she had just been waiting for us to leave the presents unguarded.

And she unwrapped the bigger present and left the little present alone.

The FREE Roof Rack is in the STILL wrapped Christmas present. She knew which one to open.

Barking Toddlers, Part Time Public School, and Being the Weird Parent

Otherwise the Busy Life I'm Leading While Trying to Market The Cowboy's Sexy Songbird and Having No Idea What I'm Doing

 

Gibson and Blueberry have a quiet moment together

My life lately, has turned into a boat ride- on a cargo ship, chugging through the cold bitter waters of the Atlantic Ocean, being whipped back and forth from wave to foamy wave. The salt water splashes over the crews' head, filling their mouths and eyes with the salty and gut turning seawater---

and I'm desperately holding onto the side rail, my stomach churning and losing my lunch over the side.

That's where I'm at lately. Mentally. Not physically.

Physically- I'm a landlocked lass, dreading the impeding doom of yet another winter -(has anyone ever asked Mother Nature why we can't change the seasons a bit- perhaps only have winter every other year? That would be great. Currently I'm on a campaign to convince Hero Hottie that we should move to New Zealand. Anyone ever been?)

Mentally- I feel tossed around like a salad- look at me being pun-ny. I think it's the contradictions I'm living right now. I'm grateful to pay for braces for Abu, but staying up at night stressing about paying the heating bill this winter because I used my saved heating money to have a torture device installed in her mouth.

Which BTW- an expander needs turning by a little 'key'- sounds innocent enough until you're in the middle of turning this key and you realize you're stretching and tearing apart the flesh of your child. Then I start to feel a bit sick to the stomach.  But we are on the last day of turning that damn key- yay Abu- and it has definitely started to reshape her jaw. Which had to be done- not just for looks, but she couldn't eat before we started the orthodontic work.

I have released my first fiction work, The Cowboy's Sexy Songbird, but now I'm stressing because I don't know how to sell it. So far I have heard good reviews and that warms my heart. No writer likes to release a piece of work and have people hate it.

Baby Blueberry will be a toddler next week. How did she turn two already? And she's busy barking at people. Everywhere. In the store. Down the street. Out the front window. And it's a good bark too, sounds just like a puppy. Many people have been startled by her barking, because they weren't expecting a curly head, blue-eyed toddler to be the source. It's just one more thing Gibson has taught her. The art of communication. 

Abu and Bean are going to public school part-time. For fun classes. Electives. At home we're focusing on math and writing. I will say right now, I'm not fond of the current methods of teaching math. Not at all. And in the future I will write about it in my blog.

We are also covering science, which have consisted mostly of field trips so far and it's only the second week.
Last year I stressed over how to home school Bean. I borrowed books from the school district, which we stopped using after the third week. I bought workbooks, which we finished but yawn. And finally towards the end of last year, because Bean was bored- I pulled out my college science books and had some success.
This year it's all college books or books from the library. I'm skipping textbooks, workbooks, and the stress of having to do something a certain way because there's an expectation of the ways things should be done.
So far, second week in, math is done -old school- science has been enjoyed and topics have been discussed for writing.  I feel more success already than the entire six months last school year combined.

I know the crazy ways I look at running my life don't make money. Trust me, you have a money question ask my brother or sister-in-law, not me. And my main goal right now is to make money- I suddenly had this overwhelming fear occur that I didn't want to be the old lady eating cat food forty or fifty years from now, so I thought I better shift gears now, while I have time to make money.
   But writing my own script has worked for me. So we're writing our own script for their education too.
   Abu wants to be an engineer. We're going to focus on math, and taking apart garage sale appliances, building things, and art.
   Bean wants to do something that isn't in an office. Which I have known since she was seven and couldn't sit still. I want her to learn determination.
   Blueberry wants to be a musician. I know, she's only almost two. But you should see her with music. It is what makes her soul sing.

  And hence, why I'm the weird parent. At least according to Bean's friends, after I made them pick their supper from the garden when they came over for a sleep-over. And it was one of the best salads they had ever ate.

   I may just have to accept that my life is messy right now. And it's okay. Because it's not a total disaster.
   But if it does get messier, than I'll just dream about New Zealand.
  Or start barking at people. Works for Blueberry.