Tuesday, April 28, 2015

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.

I'm a gamer.
I'm a 40 something

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?

Monday, April 27, 2015

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.

It will happen,

Tuesday, February 10, 2015

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!