Recap and Looking Forward

This is one of those catching you up, what the heck has Christy been up to sorts of posts.

Looking Back
I think of 2015 as the year of perseverance. It was a mix of really amazing opportunities, adventures of all sorts and some moments that were super challenging.

Bit of a Bump
2015 started out with a surgery to have my gallbladder removed by a new-to-me surgeon. Up until then I had been really spoiled with having one surgeon who did all my work for the last twenty- ish years. Thankfully my Gastro referred a very skilled person and all went well.

Got Awesome
Next came the 2015 #IBDSocialCircle. This was my first IBD conference where I would get to meet other advocates. I was super excited and didn’t know quite what to expect. I knew Sara Ringer would be there and that was it. I met the very nicest IBD Advocates, did my best to live tweet an IBD Social Circle Round Table, got a sneak peek at upcoming endeavors designed to improve the lives of patients and collaborate with fellow advocates during an all day meeting.  I was in Gastro Lady Heaven!

Got Exciting
As soon as I got home from the IBD Conference Where my Wildest IBD Dreams Came True – I dove head first into buying a house and moving.  I seriously put my luggage and IBD Conference swag into a box, taped it shut and kept going until June.

So we have this house and are pretty excited to have a cozy little place just right for us where we could be Zen with our offspring.  We went in knowing there was some yard work and painting to do. And we were cool with that, as long as the house was sound. It would be a fun adventure. That notion lasted for about a minute before the peace and opportunity for transformation that was our house began to resemble that 1986 movie, Money Pit, with Tom Hanks and Shelley Long. Repairs – bugs- wilderness- rodents- pluming – broken major appliance- tenting and gassing, multiple roof issues, water damage, interior wall repairs and on. So far home ownership has been one adventure after another.

Secondary Disease
So I have Meniere’s Disease. It’s not fun. I did a post about it to give you an idea. About a month after we moved into our home, it decided to be really active. Meniere’s is quite ambushy and took some serious trial and error to figure out how to get some relief. I would like to tell you things are better. They just aren’t. I take sedating meds which somewhat calm down my ears before doing fun things and I keep food down because of sublingual anti nausea meds. Thanks to continuous tinnitus, I don’t have silence anymore. My hearing drops out for short periods of time in one and sometimes both ears frequently enough for me to mention it to you. It’s an ongoing process.

Crohn’s Disease
I see my Gastro on the regular, like ya do, and he reminds me it’s been a minute since we’ve done a pill cam. So I do that and it’s super amazing because the geek in me loves all that medical science working its way through. Plus it was one of the new systems that don’t use all the stickers but a large sensor plate worn belt style. (Future post about that) My pictures came out clean, my blood work came back lovely. The words ‘It looks like you are in REMISSION.’ were spoken. My Gastro brings up the idea of going off meds. And so that’s what we do. I am still amazed and really grateful about every bit of this last paragraph.

Otherwise known as ‘Mamas going back to school!’ With both kids stable and at their school during the day, it was time for me to go back and work on my education. I was super excited and optimistic that this time it would all work out. I was older, my health was more stable and with that pesky gall bladder out and an Ostomy on my team this go around, college was really going to happen for me. And it did. But the start wasn’t as smooth as I would have hoped. Those credits I managed to earn twenty years ago didn’t transfer. So I was starting over from scratch. At first I was pretty bummed but then I decided it would be okay. After all, I’m going back to gain skills to be an even better advocate. Psychology, public speaking, writing and more will help me be better at what I enjoy.  As long as I keep my goals up front, I can’t be bummed about that.

Recovery aka Holidays
Holidays marked the end of my first term back in school. I was proud to earn a solid B in Psychology, consistently work on home repairs with The Husband, and have time to relax with festive tree trimming and cookie making. Much needed time off with my wee family and Grandparents down for a visit was the perfect ending to a rollercoaster year.

Looking Forward to 2016
*First of all, I’ve got the hang of this college thing and I love it. My schedule works around my children’s time in class and I still keep my weekly volunteer time at their school. I’m taking classes that apply to my advocacy love and dream job which feels really good.

*Our hard work has paid off. The house is stable enough where we can divert some of our resources towards yard work – which I love.

*Back to Creating
With all that work going on there was limited time for fun stuff. It felt like we were always coming home to another thing to fix. Now it looks like the road is becoming more even. I’m getting back into the swing of being creative again. I’ve begun to crochet a little, write more and hopefully paint something that isn’t an interior wall.

Part of that goodness is that I’m back to sharing with you, but in a more rounded, balanced way. Sometimes I feel like I don’t have a lot of new IBD related things to say. But being a Crohn’s Disease patient and Ostomate, my everyday life is very relevant. There are things I do now I never dreamed I would ever be able to do when I was sick. And while I am well now, I know Crohn’s Disease could come back tomorrow and do its best to take all this goodness away. I am very aware of that.
And so to fit that intent I have a new page look which will continue to evolve. If you like it, thank my husband. He really listened to what I wanted and is making that happen in real life. He really is a sweetheart.

Thank you for reading and catching up on my 2015 recap. It’s amazing to look back on a year of change and learn from those experiences. I am eager to see what 2016 has in store.

Painting Rainbows on Jagged Glass

You know what, I’ve been in a lot of pain lately.  Don’t get me wrong; I’m a pro at remaining calm and carrying on.  But wow it’s been difficult.  Someone noticed I wasn’t feeling well today and that was hard.  I thought I was doing a much better job of playing normal. Darn, darn, darn!

Pain, fatigue, lack of sleep, achy joints, clammy sweating during the night to wake up cold and in need of an insulating layer of beach towel as I’m too tired to change the bed and guilt and shame over the idea of waking my comfortably sleeping husband over repeated restlessness. I will close my eyes, I will shut down, I will open my eyes again with that sense of having having never rested. Whatever restoration I take in those moments is my fuel for the day. I walk around feeling like a wrung out rag with a job to do.

I get winded doing the simplest things. Breaking down processes to make them more achievable such as folding laundry, making dinner, even getting ready in the mornings is the only way to get them done. Y’all just need to calm down and be patient or help me out. Mommy needs a break for a minute.

It’s hard to balance what to share, how to share in a situation that is still evolving, and tell the truth without bringing you (or myself) down. A big part of my success at carrying on is minimizing my experience and pushing off that gravity. Move forward always. Coping by painting rainbows on jagged glass is my specialty. I’m simply trying to walk carefully through this rough patch without getting cut.

My liver levels are off. I have pain that kicks and stabs from within. I have difficulty keeping down food. I am jaundiced and really hoping no one else will notice. I am worried for my family. I’ve been this sick before and I hate that I’m here again. I’ve got a bucket of anxiety and it’s overflowing.

Of course someone could tell my normal was a big ol’ act put on for everyone else. My heart wasn’t in it.

All of you out there not feeling so great but killing it anyway totally Rock!

Parenting Through the Tough Days

Not feeling so hot? Having a flare up or sick day? Your kids still need you. Here are a few things I do to help myself out when parenting my kids on the hard days. Hopefully some of these tips I show can help you. Hang in there, it gets better. Keep trying.

Parenting Through The Tough Days Video/Link

I did a video to go along with the Parenting Through the Tough Days blog.  I show the fun bags and talk about my kids a bit.

Truth be told, this is what I look like when I feel like crap.  I wanted to show how I actually look when I am sick.  To dress it up or be something that I am not would give you a false impression of what it is really like.

I will say though, when I am sick and I attend activities with my kids or go out with my mom friends, I do cover it up.  Unless I am twisted in pain, nobody would guess that I am unwell.   No one minds hanging out with the sick girl.  However, no one (including me) wants to hear about it all the time.


Parenting Through The Tough Days

Dress up with photos after.


I think of myself as a wife and mother first.  My Crohn’s Disease and Ileostomy come second.  I try not to let my Crohn’s define me or get in my way.  However, there are days when flares accompanied with fatigue, joint pain, inability to eat, and gut pain make my job as wife and mother trickier.

Today is one of those days.  I had a dental complication where a fractured wisdom tooth lead to a crown, then ended up needing a root canal, and then got infected.  So I have pain and infection (needing antibiotics and pain meds) which lead to an inability to eat and an ensuing Crohn’s flare.  Ick.

I am a stay at home mom to a six year old and a three year old.  My favorite job in the world is the enrichment of my children.  My kids still need me even when I feel like crap.  During the tough days I condense my life down to the basics.  I focus on feeding, entertaining/nurturing, and maintaining my kids.

First off let me say that PAPER PLATES ARE OKAY.  There are perfectly healthy moms out there who would love a day off from dishes.  I am here to dispel the shame of using picnic ware.  Disposable plates are not just for BBQs, play dates, and picnics.  It is certainly more than okay to use paper plates when you are not well.

Now to the food:  When I am feeling well I make extras of my family’s favorites and store them in the freezer for days when I am not up to making dinner.  (Sort of like a rainy day fund but with food.)  Tonight I pulled out baked spaghetti to warm in the oven for our family.  If this is not your style, there are many family sized dinners in the freezer section of your local grocery store that taste almost home made.  We like the Stouffer’s lasagna.  Add a salad and a baguette and you are set.  I also love my crock pot.  This is my favorite kitchen tool.  Put a roast in the crock along with some scrubbed potatoes, carrots, and seasonings.  Set the dial and leave it alone.  Later that day dinner is done with very little work from you.  Chili, chicken enchiladas, soups and more are all possible in a crock pot.
When it comes to snacks and lunches, simple is best.  My six year old loves to help.  I let her make the peanut butter and jelly sandwiches ~ or sometimes we love hummus sandwiches, while I pour the milk and grab the sliced veggies.  We also enjoy pocket bread with cheese and tomato sauce zapped in the microwave to taste like pizza pockets.  My three year old is great at clearing away the paper plates.  Everyone can help.

Entertaining/nurturing my kids is fun even when I am running on fumes.  I turn the kid music on to set the mood.  Simple is best here as well, puzzles, Legos, and play doh are all fun activities that involve lots of nurturing one on one time but do not include jumping on mom.  More things my kids love to do are play dress up then pose for photos, story day, and blanket forts.

Sometimes mama needs a few minutes alone in the bathroom.  This is when I drag out the ‘Fun Box’.  I get the large size zip bags and put a fun activity in each one.  Last time my three year old used the one with the orange play doh and the plastic Army men.  He created hills and caves for the army guys to explore.  My six year old liked the idea of play doh and used the sea foam green play doh with the plastic starfish and sea horses to make a sea scape.  I was done with my business before they were finished and I patted myself on the back for a job well done.

Maintaining kids sometimes requires trickiness er cleverness.  I admit to doing ‘The Fastest Brush in the West’ to get small mouths brushed and clean lickety split. And I admit to telling them if they get their pajamas on super fast then they will get two stories before bed.  (I always read them two stories anyway)  It cuts down on the “Aw mom!” and focuses in on the need for speed to earn the cool ‘extra’ story.

Now on to husband (or spouse/partner) help:  I am the most lucky girl in the entire world when it comes to getting help.   When my husband is home he reliably pitches in with the day to day requirements of a home with children.  He puts primary time into our kids who adore him.  He also helps by doing laundry, vacuuming the carpet, taking garbage to the street, and he even does the dishes!  He is amazing.  Sure, he does it a little differently than I do.  But it gets done, and he does it well.  Getting help from my spouse is like him reaffirming that he is in this with me.  He understands that there are some days when I need just a little more help.  He lets me sit down at the end of the day and take a break.  I certainly married a gentleman.

Most of all: IT IS OKAY IF YOUR HOME IS NOT PERFECT.  In fact, on days when you are not at your best your home will likely be super messy.  Surface damage everywhere.  Toys scattered on the floor, laundry hanging half out of the laundry basket, and counter tops that would make Martha Stewart cringe.

Get the rest you need so you can heal.  The house work will wait for you.

Also know your kids are super smart.  They see you are not feeling well.  They also see that you are trying your very best.  Where appropriate, let them help.  They can tidy their toys, put away puzzles/activities before moving on to the next one, and clear their plates away.
Accept lots of hugs and moist little kid kisses and tell them it makes you feel better.  Because it does.

Keep trying