Getting Bored of Being Sick?

 Being sick sucks.

 Everyone knows this.

 What a lot of people don't know, because they haven't been sick long enough, is that being sick is BORING!

Don't get me wrong, there are some really, really exciting days that I would never have without my chronic illness. You know, like the ones where I'm not allowed to take Imodium anymore, but I try and leave the house anyway, only to have my guts start rumbling 1/2 way to town. The road I'm on is busy and has no shoulder to pull over on, so I start playing the "let's see if I can make it to the store before I crap myself" game. Which I loose and I have to go all the way home again, clean up, and try again. Exciting!

 Yea, I can do without that kind of excitement.

 So a lot of days are boring, because my guts are queasy, and hurt, and I know if I get in the car things are going to get way to exciting for me, so I just stay home and try not to move a lot.

These are the days I'm talking about. When moving to much is either too painful, or likely to make you run to the toilet more, what do you do? How do you keep form going out of your mind with boredom?

Sometimes I read. I'm currently hooked on Patrick Rothfuss's King Killer series, I do wish they came out a bit faster.

If I'm feeling creative but not able to be up and around then I sometimes crochet. I did a lot of crochet in 2014, but this one is probably my favorite piece I made last summer.

It's the "Absolutely Gorgeous" pattern by Terry Kimbrough. I'm on Ravelry you can find all my projects there along with any information you want to know about them. My user name  is deathbycanon, and I love getting new crochet and knit friends there, so drop me a request if your in the neighborhood.

If I'm having a lot of pain then I usually need something I can really focus on to help keep my mind off it. Sometimes that means crocheting + a documentary or an audio book. Doing both things at once is sometimes enough, but sometimes it means gaming.

Yes,
I'm a gamer.
I'm a 40 something
girl
hardcore
gamer.

Right now I'm playing

on the playstation. If your a playstation gamer, and a chronie, my PSN is deathbycanon1.

On the computer I'm a total addict of this game.

 

I have a vanilla server but I'm loving "Attack of the B Team" and "Sky Factory" right now. I think my minecraft user name is also deathbycanon1 :)

 

 

I get a lot of crap for being a gamer, but I'm not a big TV watcher and I believe in keeping an active mind. Gaming does that for me. It also allows me to put total focus on something else if my pain level is getting high. I'm not allowed to take pain medication, my doctor says that narcotic pain meds can paralyze the guts and increase my chance of rupture. So I am on my own for pain control and this helps.

 

So these are a few of the things I do on the bad days, the boring days, the days that I don't want to just lay around and feel miserable, but can't do much of anything else. Instead I grab my heating pad, my liquid foods, and keep busy the best I can.

 

What do you do to help you through the "boring" days?

What happened to 2014?

Did you notice there was a little gap in my blogging? You know, little, as in a year...... ya, well life sort of happened. Crohn's sort of happened. I was sick most of 2014 because they couldn't get me on any meds. I was only on methotrexate and they weren't putting me back of steroids because of the whole myopathy, pitting edema thing. I had been on all the approved suppressants and there was nothing left for me to take. Except Stelara, and it wasn't approved for Crohn's. It still isn't. It's also $14,000 a dose.

  It's free if  you can get on a study, and I go to mayo clinic, where the studies are being conducted, but I have a history of Disseminated Histoplasmosois, so they declined me for the study. Eventually though Johnson and Johnson allowed me to be in a financial program, and now they are giving me the drug for free. It's working, sort of? It's always so hard to tell. I have strictures and lots of damage so the diarrhea thing is probably permanent and I still have pain, but there are no areas of active Crohn's showing up in scopes or in my MRIs. I'm planning on my first surgery in June, I'm a little scared but they said it should go fine and the strictures will be removed so hopefully that will take care of the pain for a while. I also have to take the Itraconazole at 1/2 dose to help prevent any reoccurrence of the histo.

  My house flooded last fall - for realz - it rained indoors! I blogged about it here: It Rained In My House I don't talk much about my Crohn's on that blog, so there's a lot I didn't tell. Like how it really stressed me out. How we were forced to live in a hotel for two and half months. How the stress and eating out all the time REALLY flared the Crohn's. We moved back home sooner then we were supposed to and I lived in my basement, just to try and get the Crohn's calmed down.

 Anyways, I was in too much pain and to sick to do anything with my furniture. I didn't want to cook because everything made me sick. I ate lots of jello, but nothing fancy. Lots of soft foods like pancakes, noodles, and mashed potatoes.  But I didn't do nothing. I do have "sick" time hobbies. I'll post a few things I got done and maybe some house updates in the next few posts.

Promise,
Really,
It will happen,
Love
Me

My Crohn's Travel Kit

I know it's been forever since I said I would post this, but I haven't gone anywhere in forever! At least not until a couple of weeks ago when I went on a 10 hour road trip to visit my brother-in-law and his family, including my brand new nephew! So I finally got around to fully restocking my emergency travel kit. Because if you have Crohn's then you know accidents happen, and we're not talking about the kind when you wreck your car. We're talking about the kind where you wreck your pants!

My kit starts with a 15 qt storage solutions tub with snap down lid. This holds everything in the kit. It also doubles up as an odor barrier, we'll get to that later.

Let's have a look at what's in there:

1. Pantie liners, because I now have a Seton and it still drains now and then.

2. Calmoseptine - if your a Chronie and don't have this - go get it. Trust me, your butt will thank you for it.

3. Rubber gloves and fingernail clippers??? I use one finger of a rubber glove to apply calmoseptine. The clippers are used to cut off a finger, of the rubber gloves, or hangnails.... I'm always getting those.

4. Ondansetron - generic zofran. Prescribed because sometimes gut paint makes me nauseous. This helps keep me from throwing up. You put it under you young and it magically disappears, no worries about throwing the pill back up.

5. Tucks, I actually don't use these often anymore, but they were useful when I had active fistulas. Or ones that had just been drained. OUCH!

6.Thermometer, beings I have a history of dedisseminated histoplasmosis and am on lots of immunosuppressants I'm required to call my doctor if I'm running a fever. Beings it's not something I would remember to pack I keep one in here, now I don't worry about forgetting it.

7. Toilet paper, there are also many rolls of this in the truck, or at least there is supposed to be. This is my hidden back up roll. For those side of the road pit stops.

8. Gas-X, with my current strictures excess gas can be painful. This is especially true after a trip to mayo clinic (4 hour drive one way). Where I have either had a scope, or an MRI with barium,Yum.

9. Imodium, I'm not supposed to take this anymore because of the strictures I have, but sometimes it's the only way to get anywhere!

10. Baby wipes, to clean up after the paper towels take care of the big mess.

11. Depends adult diapers. Yes, I wear these on long trips. I would rather throw out a diaper then my underpants. Also I don't mess through them, so I can still wear the pants I had on and just change the diaper. It also saves the car seat, although because of the Crohn's I will not own a car without leather seats.

12. Plastic freezer bags. These are to put you dirty clothes in. You seal them into the zipper bags, then dump everything out of the storage bin and put the bagged clothes into the bin and snap down the lid. This is for order control.

13. My blue carry bag. I don't carry a purse so if I need to take a diaper, some rubber gloves, and my butt cream into a pubic bathroom I stuff it all in here to carry it in.

Things to take that are not pictured:

1. A change of clothes

2. Small garbage bags or plastic grocery store bags. To throw away your dirty paper towels and baby wipes.

3. Blanket and beach towel. The blanket not only gives you something to cover up with if you want to take a nap on your trip , it also gives you the added bonus of becoming curtains if you have to change in your vehicle - been there, done that. The towel is to cover the seat. :)

4: I keep unopened car deodorizers in the glove box. A Crohn's accident stinks. As in both "something smells bad" and the "this sucks" meaning of the word. In the winter I really like the vent clips, the heat really makes them smell good fast. In the summer you can at least put down the windows and drive fast. :)

Do you have anything you carry with you for those unexpected accidents?? Let me know in the comments below. 

Next time I'll catch you up with everything I didn't blog about last year. :)

Until next time,

Happy travels Crohnies!

I Lied

 Remember when I posted last I told you my next post would be about my emergency poop kit, yea well I lied.

I honestly was going to do it, but I went out to take the photos and found it had been ransacked. My family knows what's in it so they are always borrowing things, that will be part of the post I do on it. I might have to travel this weekend, so it might get restocked this week. 

don't hold your breath!

In honor of Crohn's Disease I have decided to start a new feature on my blog called..........

"CRAP IN A POT"

It will be a feature every Monday

We all know I'm not that organized, it will be a new feature whenever it pops up. Like today, I feel like 💩 - and yes that is my favorite emocon from my phone, and yes I am phone blogging again. 

Now back to our regularly schedud program:

CRAP IN A POT

Crap in a pot is what happens when we Crohnies feel like crap. Only in this case it's the dinner pot. 

The basic idea is you take a protein, a vegetable, some cream of whatever soup, some seasoning and throw it in the crock pot and walk away. It's a whatever is on hand because I don't feel like going to the store type of meal. It's a takes 5 minutes to throw together then you can forget about it the rest of the day meal. So here was my today's 'Crap In A Pot' dinner. 

Today I'm dealing with an abscesses tooth, a cold, and narrowing of my guts that has me waking up in screaming pain if I don't eat fairly soft foods. I was really in the mood for comfort food,which meant  noodles and something with cream cheese in it! Here's what I did:

4 chicken breasts

1 can cream of onion soup

1 pack dry ranch dressing

1 8oz envelope cream cheese

1/2 cup sour cream

Splash of milk

Normally I would add a vegetable, but with the guts being so touchy vegetables aren't really on the diet right now. Also if your lucky like I am and your kids are older, you can assign one of them to make the starch to poor the gooey stuff in the pot over. It's good for them - not the crap in the pot, can you imagine the calories in that! Cooking - they should know how to do that before they are old enough to move out - otherwise it's just one more reason for them to stay. 

yea, they should really learn to do the laundry too!

So that's our new feature 'CRAP IN A POT!" It should be said with enthusiasm and in your best announcer voice.

Until next time Crohnies.

Keep your butts clean, 

D.

Let's Talk About Shit

***WARNING non IBD people may want to change the channel, please tune into my shit free channel Sentimental Redo to see the same furniture flips without the shits! ***

 

"Let's Talk About Shit"

(Punch it, Hurb
Yo, I don't think we should talk about this
Come on, why not?
People might misunderstand what we're tryin' to say, you know?
No, but that's a part of life)

Come on

[CHORUS]

Let's talk about shit, baby
Let's talk about you and me
Let's talk about all the good things
And the bad things that may be
Let's talk about shit
Let's talk about shit
Let's talk about shit
Let's talk about shit

.......

 

 

Guess what we're talking about today fellow Crohnies! You guessed it, we're talking about shit. :) Pease turn your radio onto the song "Let's talk about Sex" by Salt and Pepper and you can sing along with my new lyrics as you go through this post.

 

Today I'm having a Cappuccino day. Most old Crohnies will know what I'm talking about, but non Crohnies and maybe some new Crohnies might not have a clue. Now I'm going to cut to a conversation I had with my doctor a couple months ago.

 

DR: I need you to give me a sample today

ME: Sorry doc, not happening, had to take a ton of Imodium to get here today. I'm not pooing for a week.

DR: Maybe you could drink a coffee of something.

ME: Yea, that might work. I'll be back in 20 minutes.

Even though I hate having diarrhea all the time, I hate not having it just as much, maybe more. I have so much damage and narrowing of the colon that when things firm up it can be quite painful as it tries to go through. Also, and here's something that is maybe weird just for me, let me know if you have this problem, but I'm not used to having anything in my guts. It feels weird, and full, and uncomfortable. I don't think it's entirely from narrowing, and ulcerated areas. I really think after 10 years of constant diarrhea I'm just not used to having a full gut, so even the times it's not painful it's always uncomfortable.


So I got my cappuccino, my heating pad, my laptop, and I'm staying in my bed all horizontal like to keep the pressure off with my most favorite Christmas present of all time, my hospital table.

I was going to clean it off and dust it before I took the photo, but that wouldn't be real would it. That would be fantasy, magazine, internet, Martha Steward life. Not real life, definitely not my real life. I'm sick of chronically ill people feeling guilty about not having perfect homes! Guess what, even non ill people have messy homes. Our homes are where we live our lives, and life is messy. Stressing about not cleaning is going to make you worse, stop stressing and live your life the best you can, mess and all! Cleaning the table is not on my list of things to TRY and do today. Today I'm going to lay in bed, blog and drink coffee until I poo. When and if I feel better I'm going to bake a loaf of bread and paint a couple of chairs. I'm ok with the table staying dirty today. I'm ok with it staying dirty a lot of days. Sometimes I don't clean it until the pile on it gets big enough that it falls on the floor when I move it. Shhhh....

Hey, guess what, the coffee's working....

I really did want to share something useful today, other then my inability to poo. On to the useful information:

I entered a contest. It was scary. Not because I'm afraid of competing, but because I had to go on location for 6 hours and the restrooms were a bit of a walk to get to. 1st I'm going to tell you about the contest then I'm going to tell you how I Crohn's prepared for the contest.

I entered our local "FLIP" contest. Each team had to make three pieces for their booth. Each piece had to consist of at least 50% reused, vintage or 2nd hand materials. We had to make one item that reused pallets, one unique storage item, and one item for the man cave. We had a couple of weeks to make the items but we had to sell them ourselves during a our city's downtown market, which was open 8am - 1pm.

Man cave tailgate bench and a 'Go Jump In The Lake' pallet coffee table

The little county vanity that wanted to be a desk w/chalkboard mirror.

Guess what? We won!

So how did I manage my Crohn's? Here's what I did.

Mornings are my worst time of day and we had to be on location to set up at 7am. SCARRY! So I started the night before. I stopped eating after dinner around 5:30. I got up at 4am hoping the guts "turned on" early. I took Imodium at 5:30am to give it time to start working and hoped it would stop the guts for the rest of the day. I did NOT eat breakfast, I also didn't eat anything while I was there and had just enough water to keep from getting dehydrated.

Coffee's working again.....
Maybe the whole day won't be spent in bed after all





Me and Maddie. Notice my crazy short hair. You should have seen it when it was only 1" long! I had to cut it after the prednisone made over 1/2 of it fall out!!! The crazy Prednisone story is here. Now it's growing out and I have no idea what to do with it!



Me in the booth with all our stuff!

Each team had to have two people, my husband was my partner but he couldn't get the sale day off work so my daughter sat in the booth with me. No way would I have tried to do this myself, if I had a flare my booth would be empty and nothing would sell. I only ended up in the bathroom once, for a false alarm.... I don't fart unless my bottom is over a toilet..... I would rather be safe then sorry.

BTW this is how I used to work. No eating after dinner, no eating work hours which were 8-12 hours long 5-7 days a week. Up all night on the toilet from stuffing myself at dinner and getting no sleep. This is why I would drop to 100 pounds every summer and why I ended up in the hospital every fall. Its also why I don't work anymore. If I want to do something special once in a while this works for keeping things under control, but doing it everyday is way too hard on your body. According to my doctors doing this everyday could kill you. There's your warning and my disclosure.

DON'T DO THIS EVERY DAY OR YOU COULD DIE!

So stay safe little Crohnies,

Next time I'm going to tell you about my big trip, and my emergency Crohn's travel kit.

D.



My 1st Build, sort of

 I got a gift certificate to Home Depot for Christmas and had not used it yet. My husband told me they would start charging me if I didn't use it soon (They don't do this by the way, but at the time I didn't know that) so we decided we should make a trip into the city so I could spend it. Also Chloe needed a new mattress and Maddie wanted to look at western boots.

In order to go and not worry about pooping my pants along the way I drank a full dose of liquid Imodium. I didn't eat the whole time we were gone and I didn't have to make any poo stops along the way or while we were there. This was three days ago, and for the last two days I have pretty much been laid up with massive stomach pain. This is why I just don't take Imodium to go about my day, the payback is hell.

So while at home depot I bought all the things I would need to make a cute little toddler bed. I want to make bigger ones but thought I better start small and see if I could manage it first. However I have also been on a purging and organizing spree around the house. Even though I was in stomach pain I decided I could sit on the floor of the kitchen and start on the lower cupboards.


I forgot to take a before photo but it looked sort of like this one. This is tomorrows project if I'm feeling better.

 

  They were so bad I decided to Google some help on how to organize them. Right away I knew I wanted pull out shelves. I priced them at Menards they were $65 for one shelf! Instead I bought all the materials I would need to build them, it was $25 plus I used 2 boards that I had bought to make the bed with so the total would be about $30 for TWO shelves.

When Kurt got home last night I gave him a list of all his tools I would need and he got them all together for me so I could start on my shelves today. Only the pain was LOTS worse today. No way was I going to run a saw or lift wood boards in that much pain. Even though I wanted to do this project all on my own, I was glad when Kurt announced after dinner that he was going to help me with my project. So I sat in a chair with my knees pressed up against my tummy and told Kurt the lengths I needed cut and where to put what boards. So I didn't actually build the shelves, but I did read the plans and adjust the measurements to fit our cupboards. The measurements have to be very exact in order for the shelves to work and they fit perfect, so even though I didn't actually build them I was pretty proud of myself for getting all the measurements right.

 

Here they are all done, or at least as done as I'm doing them right now.  The shelves are supposed to have the screw holes filled in, sanded, and then painted/stained and sealed. Yea, I didn't do that either. I just wanted them in so I could get the dishes that go in that cupboard off my countertop. Someday if I have more energy and time I may go back and finish them off, but for now I just want them in and I don't care what it looks like behind closed cupboard doors. As they are I love them! Because the top shelf used to be a tiny half shelf we now have lots more room for the dishes there, plus it's easier to get to the dishes on both shelves.

 

 BTW I know it is unusual to have dishes on the bottom shelf, but my youngest daughter is clumsy and short. With them on the bottom she can get to them herself, plus we live in the country and mice are a fact of life once in a while. So keeping dishes here instead of food keeps the mice out of the kitchen.

 

I used these instructions here and here  and adapted them to our measurements to make the shelves. They are super easy to follow and it's just a matter of measuring and doing the math to get them adjusted to your cupboard length and width. Kurt was so impressed with them that he voluntarily wants to make two more for the cupboard next to them. I would have to say this project was a big success!

New Stuff!

Today I found out I can blog from my phone! This is because I got an iPhone. Verizon  was offering the iPhone 4 for free, and even though I didn't want one I caved and got it anyway. This is why I had to have an iPhone:

Mayo clinic has an app for iPhone! If you are a mayo clinic patient this is worth getting an iPhone for! No more having to carry around your paper schedules, or trying to remember what your doctors told you. It will all be on your phone! You even get your lab results as soon as your doctor does. If you travel a long ways to go to Mayo and end up in the ER back home, all you have to remember is your phone because your medical history is there too! 

The down side to this app is it only works  with iPhones, iPads and such. It does not work for android devices, otherwise I would have skipped getting the iPhone and used my kindle with it.

So I haven't blogged about food in a while. My daughter Maddie made "Aunt Janie's beans" tonight. 

They are her favorite and she made me call Aunt Janie for the recipe after we visited her in Kansas City last year.

Now I will give you the recipe as Aunt Janie gave it to Maddie. It's very technical, you have been warned.

Did you get that? Just incase you can't read Maddie's recipe here it is typed out.

Aunt Janie's Beans

Beans

Lots of brown sugar

Little bit of cinnamon 

Tiny bit of syrup and ketchup 

What did I tell you, very technical stuff. BTW syrup is pancake syrup. Now some people love these beans and some people hate them. For me it just depends on how much of each ingredient Maddie used that day. If she puts too much syrup in them I don't like them. 

But she did a good job on them tonight and they tasted just like aunt Janie's.  Good stuff!