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!

It's OK to be Sick

 I told you in my last post I'm getting OK about how life is a journey, and how each new road we travel teaches us something new. I told you how in my journey I was forced to take a detour, the road I had to now travel was called Crohn's. It's bumpy, painfully jarring, and filled with puddles; that's the nice version. The not so nice way to describe it would be to say it's a shitty, messy road that's a pain in the ass to navigate.

How I imagine my Crohn's road looks. Wet, messy, always thinking I might fall off the edge and never knowing what's around the next curve.

But like it or not this is the road that I have been forced to take.

I didn't like it and for a long time I pretended I was still on the highway. I ignored my illness and kept going full speed ahead. Actually I probably went a little over the speed limit. I was sick, and they didn't know what was wrong with me. I was a stay home mom, but out of the blue my phone started ringing because my hobby, photography had gone viral locally. That year, while sick with an unknown illness and my 5'6" frame weighing 103 pounds I agreed to photograph 20 high school kids before the end of the season two months later. I also photographed some families, children and babies. Two years later, diagnosed with Crohn's and Rimicade no longer working, I stopped taking appointments at 117 high school kids, the last kid I took booked 8 months in advance. This self taught stay home mom grossed over $135,000 that year, by herself. She also landed in the hospital and was told if she didn't stop and slow down she was going to die.

That was my denial of my illness, my I'm not going to let Crohn's win mentality. I did exactly what I wanted to do and taxed my body past it's endurance. During that time and for many years after I tried the diets, the miracle cures, the positive thinking. I did everything but accept the fact that I have an illness, and that it's now a part of this body. No amount of my will or bulling was going to make it go away.

Acceptance of your illness is not letting it win.  It's educating yourself about your illness and being an involved participant in your treatment program. It's being your own advocate. It's taking care of yourself and meeting your bodies needs, something that you should do regardless of whether or not you have an illness. It's about being OK with 2pm naps, and not telling yourself your lazy. It's about days when you cry and feel sorry for yourself, and times when you get angry at the injustice of it all. Those are normal feelings and you are justified in having them.

My motto for my own chronic illness.

Acceptance of yourself as a chronically ill person is hard, it's something I still struggle with myself, but it's getting easier every day. In the next couple of weeks I'll talk about some of the acceptance points I listed above. We'll talk about how Crohn's has made me more acceptable of other peoples weakness. I'll even tell you some of the things I do specific to Crohn's that makes life a little easier.

Until next time Chronies.

I'm getting OK

I recently found a blog, it's a tumbler feed, called the Internal Acceptance Movement or I AM. It's about accepting who you are, as you are. I did that in high school. I remember it as clear as yesterday, coming to the realization that what the "in" group thought of me didn't matter. I realized that I was just as pretty and fun as the popular girls. I accepted who I was and I loved myself. I thought I was still being true to that self, but I haven't been. Not since getting sick.

When I was told I had Crohn's I decided it wasn't going to win. I was still going to do whatever I wanted to do. I denied it, I ignore it, I fought it. I never accepted it. By not accepting Crohn's I'm not accepting myself. Crohn's is as much a part of this body as having brown hair, brown eyes and freckles is. It's time for me to be OK with that.

Having brown hair, brown eyes, and freckles, doesn't define who I am. It's my description that people would use if they were looking for me in a crowd. It's not who I am as a person. I'm the same person if I color my hair, wear colored contacts, and use foundation. Many people say that they will not let the (illness) define who they are as a person. To some extent I think this is true, you are not your illness. I am not Crohn's, but to say that it hasn't changed me would be a lie.

It hasn't changed me in a way people can see. Unlike the use of my physical characteristics I can't be found in a crowd by saying "I'm looking for someone that has Crohn's" then have someone else say "Yea, I see her, she's over there." A chronic illness, like many of lifes unseen pains, changes you emotionally, and I'm not just talking the inner ups and downs of dealing with a chronic illness.

In order to put this into words I need to go back in time a little. I remember walking from school with a friend, this is when I was in junior high. She was telling me how miserable her life was, how it has been bad her whole life, and telling me all these really bad things that have happened to her. Only to me what she had gone through, what she was going through seemed like a walk in the park. So her parents were divorcing, mine went through a physically violent divorce when I was five. That was hard, but I went through much harder challenges before I reached this point where I was listening to my friend complain about her life.

Even listening to her I didn't feel the need to say, my life has been worse. When I through about it at home later I remember thinking that many of my peers were holding up signs that said "this bad thing happened to me" but I never told people what happened to me. I realized by searching inside myself that I didn't need to.

I had already accepted it and  believed that because of the things that I went through I was a stronger person. It happened to me, it was over, I was still alive, and I was stronger for making it through the pain. I still believe that. I believe that every painful thing we go through changes us. I believe that if we accept those painful things and learn from them we can come out the other end a stronger better person. I also believed that I was a stronger person then my friend was, because what I went through was so much worse then what she went through.

 A chronic illness IS something that happens to you, it IS painful, it SHOULD change you. It does not define who you are, but it is something that can lead to who you will be

 I believe life is a journey, using that I imagine my life as a road. It's a road with many intersections. Sometimes we choose to turn at a particular intersections but sometimes we are forced to take one that we would not have chosen. I believe that the roads we are forced to take are the ones that we are meant to learn the most from.

 When I was 33 I was cruising down the highway of life when I was forced to take a detour at the exit marked Crohn's. It's not the way I would have chosen but it was the only way left to go so I had to take it. My road didn't end, I'm still on a journey but the only way I can reach my destination is by taking this road marked Crohn's. It's a hard road to drive and I have learned many new driving skills to navigate it. As I have driven this new road full of puddles I found a new sticker for my vehicle, and it's the biggest one yet. It reads "ACCEPTANCE" and it encompasses so much more then just the Crohn's.

I have a lot to tell you about this new road and that new sticker. I can tell you that not all of what I believed after talking to that long ago friend is what I believe still, but it's hard to tell. It's hard to take something you KNOW on the inside and place it outside of yourself. It's hard to find the words to tell it just right. So I need to leave for a while and think on it, but I will be back to tell you about the things I have found on this part of my journey. Until then think about your own journey and where it is leading you.

Crohn's & Flu Season

I sort of have a love hate relationship with flu season. Being on immune suppressants I'm forced by my doctors to get my flu shot every year, so I don't ever get the flu. At least I don't think I do. The flu, a bad flare, who can tell the difference. It really all feels the same to me. As a matter of fact the easiest way to describe Crohn's Disease to someone is to tell them it's like the flu that never goes away. This is why I think it's a mistake to have  Crohn's awareness month in April. I don't think Crohn's should have an awareness month. I think it should have a season, flu season. Crohn's is so much easier to understand if you have just had the flu.

I like it when my own family gets the flu, doubly so if someone craps their pants. For those of you that don't have Crohn's I know I sound like a bad person right now. If you have Crohn's you might say out loud that I'm a bad person, because who wants their family to feel sick? But I know your smiling just a little bit on the inside when someone other then you, or the baby poop their pants. For  a few days the flu it lets your family feel the way you have to feel every day. Lets face it when your family is around you every day Crohn's just becomes part of who you are. "I don't feel good today" is often replied to with "you never feel good." I remember once when I was in so much pain it was making me puke. I was puking into the kitchen sink, and my then 12 year old daughter brings me a towel. This is an unusually kind gesture coming from her, I was very touched, until she opened her mouth and asked if I would make her a sandwich.

When my husband and I were in marriage counselling with a therapist that specialized in working with couples dealing with illness, one of our biggest breakthroughs came when my husband got the flu, and crapped his pants. He took paid sick leave and laid in bed for two whole days complaining about how sick he felt. At counselling we were able to help him realize that I feel like that every day, but still got out of bed and went to work. He also realized that with me, being a self employed full time photographer meant I didn't get paid sick leave. I would go all day without eating because it would mean less chances of me embarrassing myself in front of clients. I couldn't stay healthy that way though and the doctors telling me to quit working. Now made sense to him. He went from going behind my back and telling people I was lazy and made myself sick on purpose to agreeing with the doctors and asking me to quit working.

Facebook and the Flu. I love how people posting that they have the flu tell us how many times they have puked. They never tell us how many times they have shit. Everyone has diarrhea with the flu. It's OK for them to tell us they have digested food coming out their mouth, but not ok to tell us it's also coming out their ass faster then usual. Vomit is just as gross as shit so why only tell us about one? This is why Crohn's is such a silent disease, no one wants to hear about shit. Not even the puking, pooping flu poster. From now on, to make it more acceptable for us to talk about our illness, lets ask the flu poster's how many BM's they have had today. I have to answer that question, so in all fairness I should get the chance to ask it. Then I could say "ha, ha beet you by 5!" or "Hey, you had the same number of BM's today that I've had everyday for the past 3 months!" Think how happy our poor flu poster would feel. They would feel so good knowing that they only have the flu.

I'm not saying we should be unsympathetic to our sick friends and loved ones. We need to realize that years of feeling sick has not only built up a tolerance for it, but also taught us how to cope. Think about jumping into a pool. When you 1st get in the water is freezing, but once your body adjusts it doesn't seem cold to you anymore. We Crohnies have been in the pool for a long time, while the flu people are just dipping their toes in the water.

 Friends and families of Crohn's patients who have the flu should take the time while they are sick to reflect what their loved one with Crohn's has to go through everyday. To that end I have made a few little signs for you to post on your facebook page, pin to pinterest, or hang from your bathroom door.





Finding Motivation

Dear Crohnies,

Have you all heard of 'The Spoon Theory' If not then it's time you read about it. It's just a way of describing to non sick people what it is like living with an energy sucking disease. Crohn's is definitely an energy sucking disease and I often refer to 'spoons' for energy because this theory has become wide spread enough that many people know what your talking about.

So if you haven't read it go read it. Then I can tell you that while on steroids I had more spoons then I could use, buckets of them. So many that I only had to sleep 3 to four hours a night and was never tired. Spoons to cook with, spoons to clean the house, spoons to plant the garden, spoons to walk the dogs. So many spoons!

Then they took the steroids away, and not slowly like they do with most people. They took them from 3 pills a day, to one pill every other day for a week, to no pills at all. I went through severe steroid withdraw. I also had adrenal insignificance, not enough to throw me into crises but enough that several weeks have gone by now since being off of steroids and I still have hardly any spoons.

It's getting better. A trip up and down the basement stairs no longer sends me to bed for the rest of the day. A big part of that is the myopathy is getting better and it's no longer such a struggle to do it. I'm back to cooking again, yes I even stopped cooking. I just had no spoons and couldn't hardly move from my bed for a while. My poor kids were begging me to cook again, as dad's idea of cooking is to grab a box of hamburger helper, and the kids hate hamburger helper.

It's not just the energy withdraw takes from you, it also takes the motivation away from you. That's harder for me, to be unmotivated, to actually not want to do anything. So that's what I'm working on now. I can't really do much about my energy levels, I'm stuck with what ever spoons I get for the day, but I can work on staying motivated.

I pick one thing to do a day and try and actually get it done. At first it was cooking again. Then I added meal planning, then grocery shopping. I do still need help with the shopping so Kurt comes with me and we do it together. Now I'm working on finishing up Chloe's room. I started it back when the histo meds first put me into remission, but then I fell into my old habit of feeling great and taking on more business then I should, then following the same old pattern I got sick again. This time we decided I'm not going back to work, and maybe that's part of my total lack of motivation. I loved my job but that's a story for another day.

The dresser I painted last year that started C's room overhaul

Back to Chloe's room. I have been picking just one thing in her room I want to get done. For example I wanted to get her pull shade done. The whole thing was still to much for me so I broke it down in little steps. 1. find a reference photo 2. edit the photo and create a line drawing from it. 3 project the line drawing onto the shade 4. color it in (this part actually took several days).

A photo of her zebra roller shade.

 

 

Next I have to work on the sewing and I am not so good at it, so it's taking me some time to find the motivation to do it. :)  I have to sew the bed skirt, it's just fabric stuffed under the mattress here so I could get an idea of how the bed would look. Then that black coverlet in the middle of the bed has to be hemmed and I'm making zebra print valance to go over the long curtains so that the wire doesn't show. 

The point of this is that having just a little thing done each day has helped at least feel like I am accomplishing something. I still have to much back pain to mop floors, and to me the house is not clean unless the floors are clean, so cleaning the house gives me no sense of accomplishment. Doing Chloe's room bit by bit has been very rewarding though. Watching it come together, seeing her come home from school all excited to see what I did that day. It keeps me motivated and makes it worth fighting the exhaustion.

However today's added assignment for myself was to blog, because posting what I'm doing is one way to keep motivated and moving forward. Also I was feeling guilty for not keeping up on the blog posts, and sharing what I was going through. After all it's a Diary of a Crohnie, and we have more then our fair share of bad days. When I am doing bad though it's hard just to go through it, I don't like to think about it, and writing about it forces you to do that. So I'm going to try, good or bad, to keep writing.

Love always,
D.

Hello Cankles

Cankles: The area in affected female legs where the calf meets the foot in an abrupt, nontapering terminus

This is a hard post for me to do. I'm not a particularly vane person, I rarely wear makeup and I have always dressed more for my own comfort then for what others think. However that still doesn't mean I want to be photographed being so puffy. But this is Diary of a Chronie, and this is what I'm dealing with right now. Maybe someone else out there is going through the same thing, they are out there surfing the web looking for answers that aren't there just like I am.

I want to throw some key words out there. Words that maybe will help people looking for others that are going through the same things they are going through. Words like disseminated histoplasmosis, itraconazole, Crohn's Disease, Budesonide / Entocort, drug reactions, steroid myopathy, and pitting edema.

The last one is the kids favorite. They call me the play doh momma. My example of steroid induced Pitting Edema. One swollen leg.

Apply pressure

Look I'm Play Doh

That's Pitting Edema.

This is me and Mr Man last Halloween. I was Flo from Progressive and Mr Man was Mayhem from Allstate. Yes we did have the best costumes, thank you. At the time I was still recovering from histoplasmosis, but I was not on any Crohn's meds. The histo meds had actually put the Crohn's into remission and I was feeling better then I had in a long time.

And me now, also I picked this one because I looked the least puffy, and the least pissed off. :)

This is after two weeks of reduced steroids, so lots of swelling has already gone down! I stop steroids Monday. Doc said it's going to be 6-8 weeks before I begin to feel any difference or even begin to get my strength back. I have read that it's going to take months to recover.

I read the best thing for me to do is to stay as active as I can, so I don't loose anymore muscle. The more active I stay the better. So I painted this.

Isn't it cute! No I'm not having another baby, it's staged with old props from the studio. I'm hoping to sell it. I got it for Chloe's room and she loved it until I painted this.

Then she begged me to let her keep it and not sell it, and I caved and let her have it, then I got to finish the French dresser however I wanted to, and I wanted it blue, not pink. ;)

So that's what I have been doing since getting out of the hospital. Trying to stay busy and keep using my muscles. I'm tired a lot an don't have a lot left in me to find the energy left for blogging. I take the photos, but it's hard to sit down and write. It makes me sleepy, like now, so I'm off to take my potassium, eat and go to bed in 30 minutes. That's how long  before I can lay down after taking it, because then I'm crashing. :)

In the Hospital

No cooking for me, and no good food either. I'm laid up in St Mary's Hospital in Rochester. My doctor called yesterday and asked me to come up and see him. He wasn't even taking clinic patients that day but was doing scopes, but asked me to come in at 5pm and see him at the end of the day. Seriously. He's a Mayo clinic Dr. Mayo clinic! And he still always takes that kind of time to see me.

My number one, all time most important piece off advice for anyone dealing with a chronic illness, get a great doctor. If you don't like your doctor, fire them. There is no reason what so ever for you to have to deal with a doctor that you don't like or don't trust. I have fired 4 doctors, but now I have one that calls me in person, and takes me in after hours because he wants to physically lay eyes on me to see how I look and how I am feeling. I like him, and I trust him, and that goes a long way towards going forward with my treatments, I'm not always 2nd guessing and questioning a doctor I don't think has my best interests at heart. So please, please don't be afraid to fire your doctors and find a new one, there a lot of them out there and someone is going to be a good fit for you. Don't be afraid to look for them, and it's OK to let them know up front that they are applying for a position to be your doctor, that just because you are there they don't just get the job. They have to earn it.

So today I am sitting in St Mary's waiting for a catscan of my belly to see why I'm having so much pain. They have done lots of blood tests looking for where the fever is coming from. They are also taking me off all steroids - at once. No weaning down. This scares me a little as I have always heard you can't do that, that you have to wean down gradually. They said beings I am in the hospital where they can monitor me they want to just take me off them. They want to see if I get my muscles back and they don't want to wait two weeks to be sure that I'm going to get my strength back. Also they think the steroids are just causing to many other things wrong with me, like the fact I also can't feel much of anything. Like I can't feel needles, which is good because my veins are turning to crap and they miss more times then they hit them. They can dig around in my arm all day and I can't feel a thing, but I also can't feel how hot water is, or if I have a sun burn so I have had a couple of burns over the last week.

I'm hoping to be out of here by Thursday but I'll keep you updated.

Copper Pennies

We finally made it though the pear salad. It was not our favorite. So the next one on the list was Melon salad. Another that is not our favorite. The watermelon jello jolly rancher taste is even almost to much for Chloe. I mix mine with whip cream and it hides the jolly rancher flavor somewhat.

Melon Salad

2½ cups boiling apple juice

1 package (8 serving size) or 2 packages (4 serving size each) watermelon flavor gelatin

1½ cups cold seltzer or club soda

1 teaspoon lemon juice

2 cups cantaloupe and honeydew melon cubes

Stir boiling juice into gelatin in large bowl at least 2 minutes until completely dissolved. Stir in cold seltzer and lemon juice. Refrigerate about 1½ hours until thickened (spoon drawn through leaves definite impression). Stir in melon cubes. Spoon into 6-cup mold.

Refrigerate 4 hours or until firm. Unmold. Garnish as desired.

Notice the heart on the top of the jello this time. That was my other huge garage sale find. Sitting on a lonely shelf were round disks with shapes,  no sane person would know what they were. I knew. I knew they were the top of my jello mold and all I had was the tulip, and now I have the other 3 for .25 cents each. A heart, a Christmas tree, and a star. Who has these things just laying around without the jello mold and why do you keep them? I guess to sell them in garage sales to crazy jello ladies. I feel like I should have blue hair right now. :)

Seriously this is how they were setting on the shelf. What sane person knows what these are.

To just go with the flow of being all blue haired old lady like today I have a new salad recipe for you. Except that it's actually a very old recipe that doesn't get around the way it used to. It apparently used to be big in picnics and pot lucks in the 60's but sort of fizzled out for more modern dishes. We were getting sick of pasta here and I was looking for a change and found this little gem in one of my .25 cent garage sale recipe books. (Yes, I have a cookbook addiction, but I do try not to buy more then one a week)

In the cookbook simply called 'Salads' they call it Heavenly Carrots, but I like the old name better, which is 'Copper Pennies'

Copper Pennies

2 pounds carrots

1 small green bell pepper, thinly sliced

1 medium onion, thinly sliced

1 can (10½ ounces) tomato soup, undiluted

½ cup vegetable;e oil

1 cup granulated sugar

¾ cup white vinegar

1teaspoon Worcestershire sauce

Salt, to taste

Peal carrots; cut into rounds or on the diagonal. Boil carrots in salted water just until tender-crisp. Drain. Toss carrots, green pepper, and onion into a bowl.

In a small mixing bowl, combine tomato soup, oil, sugar, vinegar, mustard, and Worcestershire sauce. Mix well. Season to taste with salt. Pour sauce over vegetables. Refrigerate overnight before serving.

NOTE: This salad keeps for three to four days in the refrigerator.

It is surprisingly good. So good that Kurt did not wait for it to set overnight, he actually started in on it last night after I went to bed. Then he took a big helping of it for lunch today, so I think he liked the change up from the pastas, and this is like nothing we have ever had before.

On my health front. When you feel like poo all the time you forget to do things. Like take your temperature when you don't feel good. I didn't even think about it, until last night, and I'm running a constant low fever. That combined with the night sweats scare me, because in my mind night sweats and fevers will always be histoplasmosis. I do know it can be any type of infection that got into the gut, but I'm guessing the Dr runs a histo panel today just to be on the safe side. Then probably more bloods and one of those fun stool checks.