Author

Christy

You Can Smile, Endure, Battle On, Survive, Thrive, & Win!

Ileoscopy

As an IBD person I go in for check ups with my gastroenterologist every 6 months. Part of that includes a periodic inside peek at my digestive tract to make sure everything is going well. Originally Gastro and I were hoping for a capsule endoscopy (pillcam) which I have used in the past with success. When insurance denied the request we turned to ileoscopy to meet our goals.

Ileoscopy is a procedure where a thin tube called an endoscope enters through the stoma to view the bowel. Smaller than the diameter of most adult fingers, the endoscope is equipped with light, a camera, video camera, the ability to add air and water and tools to take a sample, if needed.

Thanks to the fact that I’m an ileostomate, scope prep was pretty easy and is the same I would have done for the pillcam. No food the day before, just clear liquid until midnight and nothing until after the scope.

Procedure day I got there early. If someone cancels, sliding into the open place is a perk I don’t want to miss out on.

Sedation – Now this is where my experience may differ from others. I prefer to be scoped unsedated. I like being able to participate in the scoping experience by shifting or moving if needed to get the best view possible. I like the ability to ask questions and get answers in real time from the number one expert in the room. Because I am involved and aware I understand the thought process of samples taken as my gastro is really good at explaining as we go, and we both look forward to follow up from the lab. For me, unsedated is worth any discomfort experienced.
*I have had sedated scopes. I simply prefer not to if at all possible.*

Because I’ve been having scopes and cams for ages now, I figured I’d go over a few pros and cons that might be helpful to know so you can plan for a successful time.

Pro Pillcam It’s really stinking cool. Requires no sedation. Depending on the type used it takes two to four images per second as it travels. All that information is streamed to your gastro office where they can review the pictures and get a result back to you as soon as the following day. (Depending on availability in your gastro office) The least invasive way to have a look at your insides.

Con Pillcam Go in early to swallow pill cam. You then leave to walk around with a device strapped to your stomach looking a little too much like a suspicious character for decent people. (The nurse will gently remind you to stay away from libraries and courthouses to avoid ending up on the evening news.) Follow eating and drinking directions throughout the day as you wait on motility to work its magic. Once the pillcam is out you then drive all the way back to the clinic to turn the crime scene esque equipment back in. It’s an all day waiting game. If you’re driving a distance to get to your GI, this can be a huge detractor. (One of the reasons why I really dislike it.) It exhausts an entire day. Things I do to help myself out: Walk around. Exhaustively. Get those bowels moving to pass the pill camera along as rapidly as possible. In my experience, pillcam day is not for taking in a movie, it’s a day for speed walking.

*You’ll want to discuss with your doc any possibility of narrowing or obstruction that could make passing the pill difficult.*

Pro Scope If you recover quickly from sedation, you could leave with an understanding of how things went. If you are a non sedation person, you have on the spot knowledge and can drive yourself to the next task of your day without delay. In and out then on your way. In addition, a scope allows you to take samples and manipulate tissue at the time of viewing. A bonus if you’re like me and don’t want to make a separate appointment for scoping on another day for results you want right away. I’m eager like that.

Con Scope
If you prefer sedation:
You will need to arrange for a driver to wait for you and take you home.
Depending on how quickly you recover, you may need someone to stay with you for a bit after going home.
Wait for discussion on findings with GI until follow up appointment or phone call meeting.
Gas. Air is used to make it easier to see. Once you’re done that gas makes its way out. This can be uncomfortable for some.

If you prefer non sedation:
Squeamishness about your body functions, bowels and the process it takes to look at them is not helpful for success. You must be okay with the idea and participate in the process of someone sticking a tube in your bum or stoma and looking around.
Gas. See above.

Commonalities
Bowel prep required. Ileostomates generally have a bit easier time than those with more parts. Follow the prep your doc prescribes, no food and lots of fluids until it’s time for nothing orally and you’re hopefully clear and ready to go. No cheating. Your doc can see if there’s residue and you’ll have to re test.

At the end of the day the scope went well. When you think about it, it really wasn’t a big deal at all. I am grateful to have a doctor on my team that shares the mindset of prevention first. Because Crohn’s Disease is a shifty little devil, you can have active inflammation even when you’re otherwise feeling fine. We approach Crohn’s Disease with the mindset of stamping out a campfire versus trying to save a forest engulfed in flames; prevention over recovery. A very important distinction that uses tools like regular check ups, pill cams, scopes and lab work to endeavor to keep the IBD flame extinguished and me feeling as healthy as possible.

I made a little video to give you an idea of how it went. Watch it if you like.

 

You Don’t Get A Vote.

Just a little after class sitting in my garden. Like ya do.

So I had an experience this morning that served as a great reminder.

It was 7:45 AM. I just got done dropping kids off at school with all that goes into that. Got myself to school on time and was feeling great about that. Heading into class I received a solicitous comment of:
Wow! You really NEED makeup.
I was caught off guard.
What the what now?!
My reply: ‘You don’t get a vote.’ as I kept on walking.
I could have explained myself. But I shouldn’t have to. I could have educated her. But I didn’t have time nor was I in that mind space.
But it’s a great reminder and good reply to have in your holster. No one gets a vote about your appearance or the right to define what your best efforts look like. Period.
You know you’re trying your best. Your best, no matter what that looks like, is good enough. And no one else gets a vote.

Apparently this is the face worth commenting on.
*Taken just now in the garden as I typed this up for you.*

PS. Aging is natural and highly recommend.

Janssen #BioExperience Tour

Recently I was lucky enough to be invited to attend a #BioExperience hosted by Janssen Biotech. It was a day of touring the facilities where Remicade is made and an opportunity to speak to the people who develop, create and produce this complex product.

Bright and early we headed on over to the Janssen R & D Spring House Campus, where research and discovery happens. It’s a large stone facility with three flags proudly flying out front. From there we were welcomed to a conference room where the presentation began.  No pictures were taken beyond the room out of respect and privacy for the scientific process and the people who work there.


^^I felt like Charlie going into the Chocolate Factory! So much science ahead. My inner nerd was jumping for joy.

And so our insider’s view into the complexities involved in developing biologic therapies used by millions of patients began. We learned about immunogenicity and interchangeability.  We discussed the steps taken to ensure consistent product and why pharmacovigilance plays an important role. Biologics, biosimilars, new ways of including people into studies that were once excluded, microbiomes and the varied ways genes play a role and the connections Janssen is making in that arena. Janssens’ focus on precision medicine with an emphasis on interception, prevention and cure as the goal. The word cure was actually used and the thought of what that would look like was spelled out. Advocates were asking questions, getting answers, and asking more. We were gathering information, confirming then clarifying, all taking in as much as possible.

^^Dr. Plevy answering questions. We seriously got to ask anything we wanted.
Table meeting image thanks to Tonic_BioExperience. Used with permission.

Next we went on a walking tour to view some of the equipment used in research and development.
Labs right there in front of us with nothing but glass walls as separation. Beside, a whiteboard with hand written positive notes. Literal and figurative messages of hope surrounded us as we viewed scientists growing the field of knowledge before our eyes. I couldn’t help but to be inspired. I wanted to participate, give a sample right there and help by making sure these minds had the materials needed to succeed.

I know science takes time. You have to think about it in the scope of decades versus year by year. But this is happening now. It was a privilege to get a glimpse. It was like peering through a nursery glass at the hope and promise of a newborn.  Instead, it was all my aspirations for a really good treatment and eventually a cure, lined up in an orderly row on a laboratory counter top. I could envision a future where IBD is understood and treated more effectively from the very start.

Our next stop was the Janssen Manufacturing Malvern Campus. We met in a conference room for an informative discussion about the physical process of product formulation and manufacturing. This is where bulk batches are made from cell cultures, ensured of purity and prepared to package for use.

One way the medication is kept contaminate free is the process of gowning. Gowning is a multi step procedure that every employee performs to protect the product that is being made. Because let’s face it, we’re all a bunch of mammals with hair and skin and sneezes. We want to keep all of that out of the treatment that patients will recieve. It is every employees’ priority to keep the medicine pure for patient safety.

Gowning1
^^So let’s go over the steps. First off, what you don’t see is the special shoes worn only in the area where meds are made. Regular shoes are shown here. Next comes a blue jump suit that goes over the foundation layer of scrubs and zips up to the neck. Then rubber gloves, booties over those special shoes, eye goggles and a head net are worn.

Next comes long slip on booties that go up to the knees and fasten with sets of straps to ensure they stay in place.

 

Gowning2
^^Then comes more gloves. By now we’re thinking he is pretty covered. But nope, there’s more.
Next come more feet covers with more ties to keep them in place, a head covering that goes right over the eyebrows and down past the shoulders. After that, a face mask is applied.

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^^But that’s not all. Next comes a long white lab coat that snaps from the neck all the way down to half-calf length. Then comes a set of sleeve coverings that go up past the elbows. Finally, another pair of gloves completes the transformation.

Because we were an inquisitive bunch, we asked further questions about this process that you may want
to know:
*The whole procedure is to protect the medication from contamination.
*Employees are checked regularly to ensure they are up to date on safety (including gowning) protocol.
*Employees who are ill stay home. No working sick. (I wish everyone did that.)
*Also, there’s very little talking in the work area. The employees are singularly focused on making sure the product is made without distraction.
*The employees work in 12 hour shifts, much like nurses and other medical professionals.
*Between lunch, breaks and restroom trips, the average employee gowns 6 times per shift.
*The medication never stops process. To ensure continual availability, the lab stays in production 24 hours a day, 7 days a week.
* It takes 90 days from start to finish to complete a batch of Remicade.

Phones and cameras mindfully stowed, we left the conference room to kickoff our tour of the lab areas where growth medium begins and the purification testing process takes place. Dressed in lab coats and goggles we were welcomed into what I lovingly think of as Remicades’ kitchen – But way cooler.  As we walked through a series of rooms filled with shelves and tables laden with equipment, each step was revealed.  The scientists were excited to show us the techniques they use every day. Their enthusiasm was infectious as the process came to life through their examples and narration.

We ended with a video tour that showed aspects of manufacture regular people should probably not be invited to walk through. I appreciated throughout how respectful everyone involved was in regards to each other, the process, the equipment and the medication itself. So an interactive video that walked us through from a first person perspective was more than perfect for the last piece of our visit.

From there we wrapped up our tour with a quick meeting where we got to ask follow up questions and the extended offer to answer any questions we wished to pose in the future.

The day flew by in a swirl of information and discovery. Before I knew it the #BioExperience tour was over. It was educational, hopeful and inspiring. I went in knowing about the topic of biologics but was impressed at the level of thoughtfulness and dedication it takes to make it all come to life. I had moments where I began to imagine a different future for IBD patients. What will this disease-scape look like for my children and how will what we are learning now contribute to that? I was inspired to go home and learn more about what I heard. Several of the topics touched on aspects of conversations I’ve had with my health team and those closest to me. This #BioExperience was perfect fuel for further education. The fact that I got to attend with amazing health advocates was icing on the cake.

**Disclaimers:
1. Janssen Biotech paid for my transportation and accommodations. However, all statements and observations are my own.

2. The image of everyone at the big meeting table was from Tonic_BioExperience. I stated above in caption and in watermark on the image itself and now here. Giving credit is important.

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.

Challenging
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.

Busy
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.

Ringing in the Summer

So I’ve been a bit a lot distant. And you haven’t heard very much from me. Truth is it’s been crickets over here all summer while I’ve been quite busy managing unexpected health Blarg!

It’s no secret I have Crohn’s Disease, an Ostomy and I’ve even mentioned my Asthma. But then there’s that other health thing I balance and pretty much never talk about. In part because it’s been relatively stable and because it’s not fully IBD or Ostomy related. To get straight to the point, I have Meniere’s Disease. (Like I really need another thing. Right?) I’ve been diagnosed for about five years but have dealt with symptoms since my mid twenties. Up until recently it’s been a thing that’s kept me off boats, festival rides and makes me woozy on airplanes, elevators, bridges, docks and most buildings two floors and higher. Every so often the tinnitus would act up or I’d get dizzy easier than normal. But it was manageable and largely not a big deal. The Meniere’s diet is a low sodium one which is opposite of Ileostomy diet. So I figured they balance each other out? As long as I was feeling well I didn’t worry about any of it.

Meniere’s (by my own non-science description) is the sensation of often painful fullness and pressure in the ears, tinnitus which is ringing, thumping, whirs, waves and that loud sound when a microphone has feedback problems.  I’ve experienced short periods of time where my hearing blanks out in one and sometimes both ears and I hear nothing at all. Silence. I struggle to hear in crowds, meetings and classes where there is background noise.  When my ears are flaring, understanding the people I love most is the job of mentally wading through the noise to focus intently on the sweet voices that are being distorted and pulled apart by a chaos of sound that only I receive.

It’s easy to sneak up on me. An unfair result to my family is that I am easily startled when they enter the room. I have no idea they’re headed my way. I’ve lost the sound of their footsteps.

The quiet things that fill in the tiny parts of a joyful life ~ like the sound of my husband breathing as he sleeps, birds as I sip coffee on the back paddock in the morning and neighbors approaching up the street as I play with my plants in the front yard have all been given an annoying auditory addition that sometimes blots the sweet quiet things away.

Tinnitus keeps me awake at night. At times the noise is maddening. I get irritated and smothered by it. It is sometimes emotionally difficult aka sometimes I privately cry, wipe those damned tears away and get back to it. I stay busy and cushion myself with the sound of my children to drown it out. I’d much rather hear them than a high pitched EEEeeeeeeEEEEeeeeee any day. Closed Caption and TV volume turned up high is how I understand a movie without bothering the husband or child next to me with “Huh? What did she or he say?” I’ve recently decided to stop asking and ruining their show. Conversations in the car are trickier. I keep reaching to turn the radio dial up to increase the volume of my children’s voices. (I wish that were a real thing.) Instead letting my hand go back to the steering wheel and ask them to repeat louder for Mama…again.

Hold up! Did I just agree to ice cream for dinner?
Hold up! Did I just agree to ice cream for dinner?

Meniere’s is more than hearing. It’s severe vertigo. Shortly after moving to our new house, without warning I was sea sick on dry land. My head was caught up in a storm and my compass was tossed. I could feel my eyes involuntarily twitching in my head trying to find solid and unable to recognize it. I clung to my bed sweaty and desperate. I climbed on fours into the shower and laid on the cool surface for relief and a safe place to vomit. Thank God for Crohn’s Disease and a forward thinking prescription for nausea meds that melt on the tongue or I would have been desperately dehydrated. My body wanted to void more than it actually did and my output was a violent spouting of liquid in the Ileostomy bag. I could not eat or drink. I was a human Exit. When all was gone I was a naked, ratty haired carcass capable of breathing and gag reflex. I was worried for my stoma herniating. I was concerned about fluid loss. I was afraid of how much worse this would get if I had to go to the hospital. The ride alone…. In that place I could not imagine it. After two and a half days with no North I was left limp and used up. Slowly over the next few days the vertigo passed and I was able to carefully navigate around.  I’ve not made it back to the care free normal I was before this latest tossup.

Turning my head too fast, some movies and TV shows, walking in a dark room without touching walls or surfaces for reference and even closing eyes while rinsing hair in the shower sets my head in a mini spin. I am clumsier than normal and I have even stumbled and fallen once because of it. I live in brain fog and vomit more than an Ileostomate should. The energy it takes to understand those around me, navigate the world and do well in it creates a fatigue that we as IBDers understand. I just feel as though I am carrying enough for two right now.  Sometimes all I can do is lay in a cool dark room and breathe until it passes.

In case you were wondering, when it comes to Meniere’s Disease there is little funding or understanding of the cause. There is no cure and treatments are life limiting.

I am receiving care. I take meds for vertigo and nausea which so far are sedating and largely ineffective. I am hopeful for the most recent med and would love to report in a few weeks that it works.  We shall see what time will tell.  But as IBDers, we understand that patience through the process of discovering the right med is part of the twisting road to finding the very best fit. I feel lucky to have doctors that are working the problem. Before this is done I imagine more experts will be welcomed to the team.

All this adds up to me taking it easier. I’m not participating in all the fun things I would rather be doing on a fine summer with my little family. And frankly, I haven’t shared with you because I’m not so jazzed about this turn of events. It’s still a work in progress to find reasonable relief.

No happy ending yet.

But there’s gratefulness for a supportive husband, helpful children and invested doctors.
And hope.

Much love to all of you my Sweet Bolognas <3

IBD Social Circle Whirlwind

Wow has life been a bit of a whirlwind. It was only a couple weeks ago that I attended the IBD Social Circle Summit. It was an amazing, uplifting and inspiring experience. I got to meet IBD advocates that I follow and admire for their educating and bare honesty. I tweeted at a live IBD Round Table which was amazing! Then there was a day of focus groups with best care for the IBD community in mind. And the finest topper of all was the honor of attending the premier of Ryan Stevens’ documentary Swimming with Courage & Crohn’s. If you have not had the opportunity to view this documentary, please do.

RyanDocumentary
Frank, Marisa, Amber, Ryan, Samantha, Sara and Dan. Panelists for the Swimming with Courage & Crohn’s documentary.

About a year ago on Lake Erie Swim 4 IBD Day and into the night I remember sequestering myself away with my lap top to capture any type of update and follow Sara Ringer’s posts as Ryan captivated us all in his grueling super human battle across Lake Erie to raise awareness for Crohn’s Disease and Ulcerative Colitis. #XErie4IBD. I sat there with my heart in my throat part cheering Ryan on, part nervous for his safety, a large part really proud. With that bystanders experience as reference I listened as panelists added further insight that served to paint a more vibrant picture of the days events. Ryan was already a beacon of hope within the community before the documentary. To see in stark detail was humbling, empowering, and powerful. The thoughtful preparation, determination, courage, and grit to do what Ryan did all to spread awareness about a disease and to give hope to others. WOW!

Zero dry eyes.

Janssen did a top job of reflecting truth onto film. Even more so, Janssen understood. You can’t make that kind of experience come alive if you stand separate from the cause. To see Ryan portrayed as the strong, raw, honest Crohn’s Disease fighter that he is, really mattered. IBD patients deserve that kind of dignity and respect. Janssen did that.

IBDFamilyPicDC
IBD Family Washington D. C.

 

The next morning I hopped on over to the DDW and experienced its Gastro Health Mecca. A landscape of booths laid out as far as the eye can see, filled with people excited to tell you about their products.

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Next time I’m either hugging or voguing this thing. My photographer strongly discouraged such high-jinks. Darn!
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The future of Gastro care spread below. I can feel the excitement. Woo Hoo!

 

All too soon it was time to head home.

Quite a wonderful adventure for sure. One that was a dream come true on multiple fronts.

The whirlwind picked up again as soon as I got home with child shenanigans, volunteerism, visiting relatives and home buying. Eek! We’re buying a home!

Here I sit typing to you; existing half in boxes. Tomorrow I work as a team with my Hubby to transport life and family to the next phase of our adventure with as little chaos as possible.

If it fits, it ships...or something like that. Glad to be doing this for the last time in a long time.
If it fits, it ships…or something like that. Glad to be doing this for the last time in a long time.

And the whirlwind continues.

Because college is next!

#IBDSocialCircle ~ Tourist by Day

This is going to be a two part thing as long posts don’t really get read and the two halves of my day were so vastly different.  I went from tourist in a new town with a new friend to attending my first in person IBD Social Circle web chat.  I want to give proper attention to each.  So here’s how the day began…..

Day one I got to the Hyatt Regency Capitol Hill ahead of everyone else and was treated with a spectacular parade. It pays to get where you’re going a bit early sometimes.

Day two was when the rest of the #IBDSocialCircle participants arrived. The Welcome Reception was scheduled in the evening which gave almost an entire day to entertain myself. Fortunately Jen of Chronic-Crohns arrived early as well. Stephanie of Tonic introduced us via email (because she is friendly and awesome like that) and Jen and I hit it off right away. Jen has a Facebook page called Crohnic-Crohns where she shares her experience with abscesses, IBD and Ostomies. Such an easy going and funny lady to hang around with. So there we were, two IBD Explorers with map in hand, we took off on foot as D.C. has so many cool things to see that happen to be really close together.

Buckle up kids it’s Slide Show Time!!
I promise this is the one and only slide show for this IBD Social Circle ~ Washington D.C. adventure series.  Mostly because after this the tempo picked up and I really started soaking in the moments….and forgot to take pictures.  In fact, I wish I had taken more.  So together let’s enjoy some of the photos I actually did take.

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We saw the capital as it was undergoing some renovation.  Nice scaffolding.

 

DC1
United States Botanic Garden Conservatory was like stepping into a tropical wonderland.

 

Fun fountains, statues and architecture.
Fun fountains, statues and architecture.  Is that a secret Hogsmeade shop?!

 

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National Air and Space Museum where we got our flight history and NASA fan girl action on!  Running around like kids in a candy shop walking through and taking pictures of space shuttle living quarters and checking out all things rockets, shuttles and communications.  Squee!!

 

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Washington Monument. This is what it looks like when you lay down and take a photo looking up. Because of course that is the very best way to appreciate the magnitude of this structure.  Cool stillness on your back slowing you down from the walk, bright sky against the dual colored stones climbing their way straight into the clouds.  Magic.

 

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Lincoln Memorial Reflecting Pool where history took a steep curve towards equality. This was constructed the year my Grandfather was born. So many great things can happen in the lifespan of a good man.

After all this fun Jen and I got lost a little on the way back.  In the end we arrived in perfect time to get freshened up, grab our supplies and head down to attend the evenings Welcome Reception.  I was about to meet the tip top of advocate awesome in the form of bloggers, vloggers, law makers and dedicated IBD supporters.  Excited, a little nervous and really hoping I would do a great job were the thoughts filling my head as I walked towards the group standing just outside the conference room.  Here we go!

Look for part two to cover the evenings events.

World IBD Day 2015

World IBD Day 2015

A while back I wrote a guest blog called 23andMe – Be a Part of the IBD Genetics Study for The Great Bowel Movement sharing my experiences with the 23andMe DNA test kit.  23andMe is doing a genetic study whose goal is to discover the building blocks that make up IBD so that we may better understand it, and in the end create better treatments and ultimately a cure.

A short time later 23andMe asked to use quotes from the article and images from my blog page. To which I responded with something like: “Go for it!”  Talk about following through.  So on this World IBD Day I was pleasantly surprised with this super cool Ta Da!  The image they created is beautiful.  And a pretty nifty thing for a kid from small town Silverton, Oregon.  I hope it helps boost Ostomate pride, IBD awareness and the ongoing efforts as an entire community to find effective treatments and ultimately cure.

So if you feel like it, go check out the 23andMe page, The Great Bowel Movements page and my article.  Perhaps you’d like to participate as well?

Glad To Be Back

Hello my lovelies! I’m glad to be back so I can share all the good nuggets with you. I spent most of the first day back napping, recovering and just starting to get caught up with everyone. What an exciting whirl wind of IBD Family and all things new and better for the IBD community. I am super excited for the future and can’t wait to share my experiences with you. I had the best time at the ‪#‎IBDSocialCircle‬ and exploring ‪#‎DDW‬ convention. There are just so many cool things to fill you in on that I will be breaking it up into different posts. But I wanted to first off say a thank you to Janssen and Tonic for making this trip possible. From food we could eat to making sure we got to our events, staying up and visiting late into the night and every tiny thing in between; we felt cared for like out of town family.

I also want to assure you that I kept my fan girling to a minimum as to not scare away the super awesome advocates that surrounded me at every turn. You would be proud of the self control.

And because this event was held in Washington D. C. I got to explore some of our nations great historical treasures with my new Canadian friend Jen of Crohnic-Crohns. Such a sweet heart. You should really go check out her page.

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Jen of Crohnic-Crohns in front of the Embassy of Canada. Check out those beautiful flags, Eh?

*Disclaimer~ This snap shot was taken later in the Washington D.C. IBD Blogger Awesome Adventure. But it was the only photo I took of the Lovely Jen as I was living in the moment so much I didn’t capture as many images as I later wished I had.

**Note to self: Must take WAY more pictures next time!

IBD Social Circle Summit Day 1

Today started early with a trip to the airport and kisses good bye to my husband and wee people. Five hours later I arrived in Washington D.C. for the IBD Social Circle Summit put on by Janssen Biotech. My sweetheart driver Muhammad, who kept calling me Ma’am, was delightful to chat with. D. C. traffic was certainly exciting. I was immensely grateful that he was driving, a dazzling conversationalist and was thoughtful in pointing out historical landmarks in our nation’s capital along the way.

At the hotel I was greeted right away by Stephanie of Tonic Life Communications who coordinated everything so seamlessly in advance and anticipated every question I needed to make my first trip to the East Coast a smooth one. This was a blessing and much appreciated as one of my not-so-super powers is getting hopelessly lost. And because I’ve never been farther East than a layover in Denver on the way to Houston, I needed all the help I could get!  So that on its own was a great big bucket of awesome!

Next I was off to my room to freshen up with plans to discover something to eat. While there I heard bagpipe music from the street below. Food can wait; I’m off to check that out! Turns out the IBD Summit coincides with the annual pipes and drums memorial for police officers who have fallen the previous year. It was a lovely tribute that felt more like a celebration. The ground shook like thunder and the air vibrated with the magic of bagpipes and drums. You could physically feel the music move through you. I am so glad I went. People were visiting with each other, perfect strangers striking up conversation. It felt like a festival. I heard from historical tourists, someone came from Ohio to visit family, another in town for business. Of course, I shared that I was here for the summit and shared what IBD was. One person knew what I was talking about and the rest were caught up to speed. Lots of fun with friendly people who were game for taking part of their day to visit and share a parade with each other.

Parade1 Parade2 Parade3

Lovely.

Tomorrow I get to meet some of the IBD bloggers I follow and look up to in person. These intelligent, funny, creative people that engage and educate. IBD Family. WOW!

Now don’t forget, tomorrow is the IBD Social Circle web chat “Preparing for Procedures and Surgery”.  So please sign up and participate if you can.  Don’t miss out.

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What a perfect way to start this kick off to Digestive Disease Week. I look forward to tomorrow when the official IBD Social Circle Summit begins, and can’t wait to share with you.

Until then.

Be well my Sweet Bolognas

*Janssen paid for my travel expenses for the Summit.  All thoughts and opinions expressed here are my own.*

The After Burn

*Disclaimer:  Adult content and language.*

I think perhaps sometimes I share too much of the good.  Always push forward.  Always look for the light and fight your way there.  Fake it until you make it is something I have been doing since I was a pre teen.  As a person with Crohn’s Disease I find strength and comfort living in a way that negatively impacts my family, especially my children, as little as possible.  I feel powerful when I am able to make my life look effortless to everyone else.

parentingUnfortunately, my positive sharing has led others to believe my experience has been the Holy Grail of easy.  Well guess what, sometimes I go through things I don’t fully understand at the time.  Sometimes it takes a while to process my junk before I feel like sharing.  And sometimes my junk is so heavy and ugly that sharing feels like an unfair burden to put out into the world.

However, today I wanted to share with you about pain.  Not the normal pain ER docs see as drug seeking.  Or chronic pain we live with to the point where we’re really never sure where we fit on the 1 to 10 pain scale.  I’m talking about what happens when pain goes sideways and becomes something else entirely.

So I have my Permanent Ostomy Surgery  and everything goes swimmingly.  I’ve written about that before. (It’s really long)  Just days after procedure I’m home, home schooling my daughter, and loving on my wee son.  Life was on track.  I was walking around normal and physically better than expected, but a part of me was emotionally numb.  It was like stepping into a life that wasn’t mine.  Everyone else was the same but I no longer fit.  I felt foreign in my own life.  Impostor.  At the time I attributed it to this huge change I had undergone.  I gave myself slack and forgiveness for the learning curve I was going through.  I was being very understanding towards myself.  But still, I felt like I got off too easy.  I was getting away with something.

Being pain free after all those years, and surviving a near death overdose in the hospital was like finally being allowed to remove your hand from the flame.  It’s that immediate, jarring, lack of sensation.  I had been living pain for so long that its absence felt foreign and far too quiet.  I wasn’t giving myself constant pep talks of ‘breathe through it, it will pass, push through, you can do it’, because I didn’t need to.  In an odd way my inner compass felt too still.  I felt far too vacant inside without the pain I had grown accustomed to.  I didn’t know I had made friends with agony until it was no longer there.

Logically I knew that everything was the way it was supposed to be.  Still, I felt on guard and uneasy.  I realized I had never really been able to rest.  As in sit in a place, pain free, and really enjoy my surroundings.  And sleep.  God!  Sleep on a level I had not experienced in years.  I could actually sleep and wake rested.  But the peace and rest I craved so much at first felt unexpected.  I would wake up and be surprised at the length of time I had been out.  Defensive and wary.  Are you sure?  That many HOURS?!  It was an odd mix of disorienting lost time and surprise that I was actually able to do it.  I could sleep through the night.  And at the time that didn’t feel right at all.  This sleeping, pain free, resting thing.  I had been away from it for too long.

And if that wasn’t screwy enough, one day I was changing my gear, felt the sting of the Ostomy paste with its rush of pain…. and warmth.  Comfort.  Which was disorienting in that it was a magical mix of hurt like crazy and strangely soothing.  It was dizzying euphoria and fear.  Which threw me.  What the Hell was that?!!  I was the stranger looking back in the mirror, wild eyed and confused.  For a moment the hollow feeling was gone.  Oh Shit!  This is NOT right.

Much to my horror and curiosity I was bent by pain in a way I did not understand.  Pain felt good.  Really Good.  Like that loose body feeling after a massage.  I was no longer waiting for Crohn’s pain to come to endure against.  It was there in another form, and it had missed me.  And I felt Right for a moment because this is what I had needed and didn’t even know it.  The combination of this mis matched pair of experiences was unsettling.  It’s not supposed to work like this. I felt like a monster.  Well Shit!

It wasn’t physical health at all.  Physically I was doing better than my highest expectations.  Instead it was a slippery little thing that snuck in between the cracks and ambushed me when I least expected.  I didn’t know what this was called.  I had never heard of it before and I sure as hell wasn’t going to tell anyone about it.

painFrom danger to peace with no transition.  Emotionally like being forcefully thrown from the top of a building to the city below.  It wasn’t a purposeful choice; I was overtaken by it.  And incredibly ashamed for that weakness.

In my life I have been physically hurt in many ways.  Never was it comforting.  This new development freaked my frick out.  My job in life until then was to battle against pain, not secretly acknowledge it as relief.

I knew no way to help myself but to keep going.  In the opposite direction.  I poured myself into my life.  I overemphasized the things I knew in my mind were normal and good.  I focused on my family and parented the hell out of my children.  It felt like I was apologizing all the time.  I stayed away from pain and hated myself when it itched against the back of my brain.  It was a hard crawl.  I felt like an ass.  I felt betrayed by my own body again.  Was I a pain junkie?  Is that even a thing?  I was Pissed at Crohn’s Disease.  Again!  Haven’t I been through enough already?

I was so proud of myself all those years for shouldering the Crohn’s Disease pain largely unmanaged.  My doctors gave confirmations which bolstered my right thinking.  I told myself I was doing a great self service by avoiding stronger meds so at surgery time I had more pain management options.  I equated pain endured to accomplishments.  Even more so if, on the surface, I made it appear effortless to those around me.  In reality, the way I endured Crohn’s Disease pain turned into a trap.

As of today, years later, I have healed to the point where I still hazard an educated guess when it comes to the 1 to 10 pain scale.  Which has always been normal for me.  I am friends with pain in that I tolerate it quite well, but no longer miss it.  I used to miss it.  I feel appropriate levels of discomfort when injured.  I no longer feel like a monster, but do still carry a shade of regret and shame.  Regret that I know exactly how pain can twist and whisper soothing things to you, and if it happened then, will it happen again?

Digestive Disease Week 2015

So I’ve got exciting news.  Thanks to Sara of Inflamed and Untamed for suggesting me, I am attending the IBD Social Circle Summit as part of Digestive Disease Week!

It’s like being handed a golden ticket to Willy Wonka’s Chocolate Factory.

Heck Yes!

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The IBD Social Circle Summit has been put on by Janssen Biotech.  It’s a way for pharmaceutical, medical and patient advocates to get together to focus efforts towards awareness and education.  These are the brains and souls that dedicate themselves to solve the ultimate IBD puzzle.  And they do it with humor, accuracy and passion.  I feel both thrilled as can be and out of my element in the most deliriously joyful way.  Most of all so honored just to be able to attend.

Last year I watched in GI Fan Girl appreciation as some of my favorite in the IBD community got together to share their knowledge.  It was hopeful as a patient to see the process in which minds of varying disciplines get together for a common goal.

I plan to document my experiences and share with you along the way.  So follow my Crohnie Bologna IBD Facebook Page and Twitter @CrohnieBologna.  You can also follow using the hashtag #DDW15.  The schedule feels like a magical whirlwind of gastro health awesomeness.  It begins with a web chat on Preparing for Procedures and Surgery and ends with the Documentary Premiere of Swimming with Courage and Crohn’s, chronicling Crohn’s patient Ryan Steven’s swim across Lake Erie in an effort to raise awareness for IBD.

To join in on the fun you can register to participate in the IBD Social Circle “Preparing for Procedures & Surgery” Web Chat.

In the spirit of full disclosure, Janssen Biotech, Inc. paid for my travel expenses for the summit. However, all thoughts and opinions expressed are my own.  Which is freeing.  I can speak honestly and not feel as though I am there to endorse any company or product.  I can just be myself which will likely include a contained amount of fan girling, geeking out at the uber smart gastros and most of all meeting people within my IBD family.

I can hardly wait.

 

Ultra Cheddar Vegan Nut Cheese


Sometimes I want a mild, delicate cheese with a creamy texture that politely compliments its surroundings. However, other times I want a bold, robust cheese that stands on its own and happily becomes the life of the party.

I was really inspired by the flavors my son prefers.  As a little boy he wants the mac n’ cheese, quesadillas and pizza everyone else his age enjoys.  But as a mom, I know he will grow to be a gentleman who will want a spicy cheese to crumble on top of his chili, melt over his nachos or dip with his friends in a savory fondue.  And let’s face it, the only reason I ever started making vegan cheese was this little boy child of mine that I love to smithereens. It makes sense that he gets the number one vote on how tasty a cheese is.

With that in mind I created an Ultra cheddar that’s delicious, great with mix-ins and super extra cheesy.  Perfect for now and adaptable for a life time of dairy free cheese enjoyment.

Most of all, my kiddo loves it!

Let’s begin with the following ingredients:

1 ½ c water
5 T agar agar flakes

3 c soaked cashews
2 – 3 cloves garlic

3 T lemon juice
2 T tahini
2 T chick pea miso (soy miso if tolerated)

1 c nutritional yeast flakes
2 t granulated onion
1 T paprika
½ t dry mustard
¼ t kosher salt (optional)

Oiled cheese container with lid

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All the parts for making cheese.

Let’s get to it:

1) In a sauce pan combine water and agar agar. Mix and let bloom while the other steps are completed.

2) Add cashews and garlic in food processor or blender and wiz into small pieces.

3) Add lemon juice, tahini, miso, nutritional yeast flakes, granulated onion, paprika, dry mustard and kosher salt. Blend until the mixture resembles coarse peanut butter.

4) Bring the bloomed agar agar mixture to a boil. Whisk continuously as you bring the temp to medium.  Continue to whisk and simmer until the liquid forms glossy bubbles and turns a light golden brown color.

5) Pour the agar agar into the processor and blend with the nut mixture until smooth. Be sure to scrape down sides to ensure all is incorporated.

6) Pour the cheese mixture into the pre oiled container. Work quickly as the agar agar will begin to set right away.

7) Cheese stays happily in the frig for a week and a half in a covered container.  Ours is consumed pretty quickly so I can’t vouch for longer than that.

*I have made two loaves at the same time.  One to use and one for the freezer.  This cheese is easier to grate when partially frozen.  Once defrosted it slices and behaves normally.  I should do myself a favor and make two more often; it was nice to have a back up ready to go.*

Voila!  Deliciousness accomplished.
Voila! Deliciousness accomplished.

Some fun add ins to this ultra cheddar nut cheese are:

2 T chili powder = nacho cheese flavor
2 T Italian seasoning = cheese pizza flavor
1 T pepper flakes = zesty cheese flavor

Happy cheese making.

Remember Who You Are


Ostomy Beautiful
Please remember who you are:
You are lovely just the way you are. You have earned the right to be okay in your own skin. You have earned the right not to hide. So Don’t. Your life and your story are valuable.

 

Tobacco Free Florida

Photo credit: Tobacco Free Florida Facebook page
This is the image used by Tobacco Free Florida in its attempt to scare smokers into quitting with the possible prospect of Ostomy. Photo credit: Tobacco Free Florida Facebook page. Click link for more. *Edit to add: Tobacco Free Florida has taken down this image from its Facebook page. It is still on their Twitter @tobaccofreefla *

I saw this and thought, ‘Wow! That’s a great big bucket of nonsense right there.’  I actually had to look at it twice to make sure I was reading it correctly.  I get what’s happening.  Tobacco Free Florida is trying to discourage smoking.  But the attempt is cringe worthy.  Making a point and doing it accurately in this instance are two very different things.  One is credible and truthful.  The other uses fear tactics and over exaggeration to sway the reader.

Yes, smoking can lead to colorectal cancer.  However, not all with colorectal cancer require Ostomies.  There are so many treatment options available that Ostomy is frequently temporary or unnecessary.  And for those that require permanent Ostomy, it has saved their lives.  Ostomy is not the bad guy, cancer is.

This campaign is holding up Ostomy as a negative consequence of smoking.  As if one would stop smoking this instant because of an Ostomy bag.  Highly unlikely.  If I were to count the negative consequences of smoking, an Ostomy seems minimal when held up against lung cancer, stroke, heart attack, and C.O.P.D. which recently took our beloved Leonard Nimoy.  Deadly.  And those are just a few.  Ostomies are not deadly.

Ostomies save lives every single day.  To shame the very tool that would save future cancer survivors is wrong, uneducated, and extremely dangerous.  What will you tell the person who actually needs an Ostomy, but won’t get one, because you made it a big scary thing to be avoided at all cost?  Because those are the exact people I help all the time.  Please hear me when I say, you are doing a huge disservice to those you profess to want to help.  Villainizing Ostomies is not the way to go.

And the caption “Do you know what this is? You probably will if you’re diagnosed with cancer in your colon or rectum.”  is a sideways swipe at those who smoke as a ‘This is your Scary future if you don’t stop.  Ostomies are Bad and Undesirable.  Smoke and you’ll have to get one.’  Adult boogie man stories with Ostomy as the monster under the bed.  Shaming and scaring with a medical appliance.

Speaking of medical appliances…. If I may point out, the bag in the middle is a urostomy bag.  For urine.  Which comes from the bladder.  Not the bowel.  I know smoking can lead to bladder cancer wherein a urostomy bag may be a solution.  But as you were colon/rectum specific, this adds to the idiocy of this campaign.

Not. Cool.

This campaign is not helpful.  Not at all.  It is poorly though out, threatening versus helpful, cutting to those who live every day thanks in large part to their Ostomies, and it’s willfully ignorant.

No thank you Tobacco Free Florida.

Try again.

Because I’m not having it.

*Disclaimer – I am a Permanent Ostomate due to Crohn’s Disease.  In addition I do not now, nor have I ever used tobacco products.  If I had my way everyone would be able to honestly say the same.  I have seen the destruction that all types of tobacco products have on a family.  Because an entire family is harmed, not just the addict.  I do not support smoking or tobacco use.  Its ravages, guilt, and extreme pull on a person have been purposefully designed to be that way by an industry that still operates and I wonder why.  I have seen loved ones try, fail, and try again to quit.  They are strong, in a way I could never fully understand, for having the courage to struggle and fight to win against addiction.*

It’s Okay To Say NO

For a minute there my world ramped up to be busier, and more stressful as the gift of time and energy competed with available hours in a day.  The things I needed and wanted to do contended with requests and obligations from others.  With each additional invitation to participate, it began to feel as though the world was closing in around me.  Life became more hectic as each square on the calendar was sectioned out to the enth degree.

busy calendar
This was so not working for me.

 

Drowning.  No, seriously.  I feel like I am suffocating in my own life over here.

And you know what?  It’s all my fault.  A couple weeks ago whilst snarfing down lava hot chicken tenders bought at the deli section of a Vons so that I would have food in between obligations, mentally running my line up of ‘to dos’, and considering making a list on my phone to see if I could streamline trips to fit more in, my life hit a snag. There I was sitting in my car with parking lot as my scenery; it dawned on me.  ‘Girl, put down the chicken.  This is how people go crazy.  You are on the brink of losing your fool mind!’

Every Single Day.  What was I thinking.
Every Single Day. What was I thinking?!

Time for a new plan.

I sat there taking in the stillness of my car.  Merlin’s Beard am I Tired!  I’m working full tilt and still feel like I’m failing.  I’m lonely as hell and I have zero social life.  How can I be this worn out?

Well, I was giving myself away one yes at a time.

So how do I fix that?  On the side of that paper chicken bag I began the ‘to do’ list to save myself.

Schedule ‘Me’ time and keep it.  Okay, that sounds easy.  But my Me time was one of the first things I was willing to give up to be helpful to others.  Me time includes yours truly on the lanai sipping a yummy beverage, going on a walk or reading a good book.  I love to pre prep crafts so I have last minute fun things to do with my kids.  I love jump roping and cannot tell you the last time I actually did that.  I really miss it too. What about that repurposed painting I have been putting off since last summer or the guitar waiting for me to pretend to be a rock star or that crochet hat/beard matching set I want to make for my kids because I think it would be hilarious?  Ya know….the silly little things that make kooky people like me feel whole.  Joy events.  One at a time my Yes gave all that goodness away.

Say No.  Which I found to be a really hard thing to do at first.  Because I’m not always a straight out No sorta person, it was a matter of finding the right language.  What I began to say is this: ‘I’m sorry, that’s not going to work for me/my family.’ And give no further explanation.  If it’s a person you are somewhat close to, simply state that you wish to scale back your calendar.

You’re thinking, ‘Oh no Christy, that’s so rude!’  I say, not at all, it’s actually very smart.  People who want to talk you into giving your time will reason away any excuse you make to prove that you can and really should do what they ask.  No further information gives the asker nothing to grab onto to change your No to a Yes.  Don’t say, ‘I’ll think about it.’ or ‘Ask me later.’  That just means, ‘I’ll say yes if you ask me another way another day.’  Don’t fall for it.  Stick to your guns.

Be prepared for people who don’t take no for an answer.  Not everyone will be understanding when you decline.  I was surprised to find some passive/aggressive behaviors when I began to say no.  Have I been saying Yes for so long that the word No is surprise enough to inspire a temper tantrum-ey episode?  From the reaction of some, I think yes.  If so, then look at it as an unacceptable (yet educational) eye opener into the character of those you were once obligated to.

tantrumFor those people who try to negotiate past your no, do not respect that you need a break, and act the fool about it, repeat the words: ‘I’m sorry, that is not going to work for me.’ And sashay away.

Never Justify, Argue, Defend, or Explain yourself to unreasonable people.

Never JADE.  Simple.
‘That doesn’t work for me/our family.’  Really is a good enough reason.

If the people you worked so hard to help really do care about you, then they should understand that you are going to need a break from time to time or move on to other things.  And that’s okay.

Be prepared to defend against the task masters.  I’m not saying that task masters aren’t the sweetest people you have ever met.  But some have gotten accustomed to their ability to talk people into doing things.  On looking back I can see where my willingness to be helpful has played to their strengths.

Don’t bring the calendar and pretend I don’t have one on my phone.  A willingness to open my calendar equals a willingness to open myself up to make more obligations.  Master task givers feed off my willingness to ‘see if I can squeeze one more thing in’ and thrive off of assigning aka roping one more soul into doing their bidding.  Because I am generally friendly, open and willing, I was an easy target.  I need to work on being more aloof.  Open calendars are for doctors appointments and joy events that I chose for myself.

Clear the calendar of clutter.  Call and bow out.  It really is okay.  At first it was a challenge to say no. But I soon found it to be liberating.  I had to really look at my calendar and seriously consider what I’d signed myself up for.  Do those things make me happy?  Do they serve me at all?  Are they robbing from time with my family?  I was the one who agreed to all those things.  Me.  So then I was responsible for untangling myself from the obligations that aren’t really important.  I went down to bare bones.  My purged calendar now consists of check ups and school events for my children.

Clean. Slate.

And I’m going to leave it that way for a while.  I’m in Yes Recovery and I require time to become comfortable living like that.  I need my life to be about love, supportive family, and our experiences together.  I was guilty of letting others carve time away from those people that matter most to me.

Be clever about your yes.  Pick a thing you are good at and stick to it.  A lady at our church does drinks.  Sounds simple right?  With dedication to coffee, juice and water, she has lifted the job of providing drinks to a higher level with skill and an eye towards presentation.  For every wedding, funeral, brunch, luncheon, or benefit she creates the nicest, most welcoming drink experience ever.  Drink Lady stands proudly to tend her beverage artistry.  After the event she cleans her station, launders the fancy tablecloths and looks forward to next time.  She loves it, it doesn’t take up so much time that she is over obligated, and because of that, she is able to give her time joyfully.  Does she do other things?   No.  Her specialty is beverages.  Simple.  We all respect that.

Don’t worry.  When things calm down for you there will be plenty of opportunity to jump back in.  But when you do start over with your time, treat it like the precious thing it is.  It’s okay to tell people that you only obligate yourself to one event at a time.
The following things count as events that are worth limiting to one at a time:
Sports for you or your kids.
Church or community events.
Homework, school or education of any sort.
Rest, recuperation and recovery of the health, spirit, or grief-loss.
Focus on the family/marriage/partner.  (It counts and really matters you guys)

Beware of the pratfalls.
*Some people confuse their value as a person with their service or deeds done for others.  Service to others is essential to being a good human being.  However, the ‘others’ that you focus on should start with self care and work outwards from there.  You have nothing to offer if you are sucked dry from giving too much of yourself.  The quantity of time given does not equal the quality of human you are.

*Teach people how to treat you. If you are always there, the forever ‘go to’ person, your presence will be taken for granted.  Before long it will be assumed by others that you will automatically be there.  You deserve to willingly offer your time and energy and give your very best every time without stifling your creativity with over obligation.

*Decisions made in times of stress or over obligation aren’t always the best.  It’s really okay to decline and keep yourself free to get through to a smoother path.  More is not better right now.  In fact, perhaps this is the perfect time to take the initiative and unload that calendar of clutter.

*Be careful of the ‘Switcharoo’.  Something that initially sounds reasonable, but then switches into more commitment than you bargained for.  Something like:  Agreeing to Help with a bake sale when the job description should have been Run the entire Bake Sale.  It’s no fun when a switcharoo turns a job into something beyond what could reasonably be done well by one person.

*The idea that serial obligation equals a social life.  Giving time can be very social and feel like you’ve gotten out and had fun.  And in some circumstances friends can be made.  However, by and large, you will run into people who are there for the event and gone.  Chances are these are not going to be your friends a year from now.  So if you are over obligating yourself in search of friends and it isn’t working, it’s time to consider letting that plan go.

*Ego driven – Some things we give our time to make us feel really good.  And that’s where it can get out of hand.  It’s nice to feel special, needed and important to the success of a project or group.  It puffs up our ego and makes us feel like a bit of a super hero.  It’s really easy to let ego driven projects grow to the point where they rob from other aspects of your life.  Don’t forget to look around to see if you’ve left your spouse and children/ loved ones behind in the process.

*If I don’t do it, it won’t get done.  Yup, I sure have felt that way before.  It’s time to pick sanity over obligation.  If you are feeling strangled by over dedication, it is not only okay, but necessary that you say No.  If it’s important, it will get done.  It just doesn’t always have to be you that’s doing it.

So that’s it guys.  This is what I’ve been up to lately.  My life has gone from being an unattainable list of things to do to a more reasonable balance.  It’s not perfect or always graceful, but I’m getting there.  The result is that I’ve been sleeping better, having fun, and laughing more.  My kids have responded and even commented on having more of me again.  Ouch, right?  But also strong incentive to keep my calendar clear for myself and for my family first.

Oh, what’s that?  You need a coordinator for a jog-a-thon coming up in March?  Gosh, that sounds fun!  I’m sorry.  That really won’t work for me.

Laughter After Surgery

On this Monday I am taking it pretty easy. Resting and recovery are the only items on my schedule.

With that in mind I wanted to talk about laughter after surgery. Laughter on its own is fantastic. Laughing lifts the spirits and sparks that joyful part in us all.

But then again, not so great when laughing pulls at stitches. Last night my husband and I were watching a funny show and nearly got through without a hitch. That is until the very last scene where one of the main characters did something so funny that my Dearest and I were rolling with laughter.

He was euphoric with comedy humor and I was gripping my side in a combo of laughing at the hilarity and body protesting the pain. I was laughing at him, then next at myself as we erupted even more so together. The humor continued to unfold on screen feeding the howling frenzy of two people unable to look away from all that perfect acting. I tried not to laugh, which made the whole situation that much worse. Tears streaming down my face, I tried calm breathing which proved ineffective when in the grips of a full belly whopper. Think about lamaze, lamaze isn’t funny. Think about real estate, that’s not funny either. And then it built up again, chuckling at my other half as he was watching me in my blended state of hilarity and distress. The look on his face with those wide eyes and open mouth guffaw was priceless. We couldn’t help ourselves, we were hilarious. The mix of cramping, pulling, roiling abdominal muscle against stitches, torment and the play of emotions, both in the show and in ourselves, was its own twisted comedy.

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Oh heavens, I really do love us.

And so today it’s no surprise I feel like I got sucker punched right in the belly. Blarg! Throughout the night I was diligent about pain meds and used a heat blanket which was heaven. Even still, today I am stiffer and slower than I’d like to be. Laughter ambushed my recovery and likely put me back a day or two in my road to wellness.

 

Boo!

Even still, I keep thinking I really need to watch that episode over again when I’m fully recovered. And no more funny business until then.

I wonder if my Hubby is up for a good drama?

Gallbladder Surgery

The last couple of days I’ve been busy with surgery pre prep. This includes doing things like packing my hospital bag (Packing Video)

Prepping a week of outfits for my children.

Clothes for the week for the kiddos.
Clothes for the week for my kiddos. The littles wake up and put the clothes on their sleepy little bodies. Less morning stress for everyone = Win!

Thinking ahead about little lunches to pack.

Fruit cups to make lunches and snacks for the week a snap.
Fruit cups to make lunches and snacks for the week a snap.

And in the past I have even done this.

Food to eat while I'm away?  Check!
Food to eat while I’m away? Check!

And tidying my bathroom and closet/dresser. (Which happens to be nervous cleaning with the benefit of coming home to a clutter free, stress free environment.) And just making sure everything is set to go smoothly while I am away for a couple days.  Aka paying just arrived bills, make sure my volunteer time at the school is covered, make sure drop off and pick up times are written down for my hubby, practice speech with the little guy so it’s easier for when he practices with his Daddy, etc etc.
You get the drift.

The surgery that I am having is a gallbladder removal. My gallbladder has been a quiet offender for the last nine years.  It was hiding as mysterious pain that I passed off as overexerting myself or being a weekend warrior and unexplained increased liver levels resulting in unfavorably high numbers that over time magically resolved.  What finally helped us put it together was this last December I passed a gallstone which landed me in the ER. Yow, that was exciting!

Gallstone ER visit.
Gallstone ER visit.

So the deal with gallbladders is they help aid digestion by storing bile created by the liver, then releasing that bile, aka gall, into the digestive tract which helps break down and emulsify fats to help digest your food. Yay!

However, when your gallbladder gets cranky and inflamed or maybe tossing stones, is when things start going sideways. Stones can back up into the liver causing liver issues, which is something I am dealing with. And sometimes stones can back up into the pancreas and cause issues there as well. Also, as in my case, once stones start moving through, a bunch get together and decide to work their way out which is painful as can be. So that’s why I’m going in.

Much of the time gallbladders can be removed laparoscopically. Which sounds terrific. There’s less down time and a smaller incision. Very good things. But, if you’re like me, and you’ve had a couple too many abdominal surgeries, there is a higher opportunity for scar tissue which makes the laparoscoping (<—-Yes, I made that word up) harder than it has to be. In essence, it makes the surgeons job tricky in that scar tissue creates an obscured environment for her/him to see and maneuver to do the job.

So I’m having a standard incision below the ribs right above the gallbladder. This will make a straight shot in for surgeon to clearly see the offending area and do his/her job.

Laparoscopic versus open procedure.
Laparoscopic versus open procedure.  Photo credit: Surgeryinfo.org

This plan of action is good for a couple of reasons.

1) Scar tissue is a beast and I am Fantastic at growing scar tissue. I’ve even had surgery in the past to remove scar tissue. So I’m pretty sure there’s a bunch in there. I don’t want my surgeon to go in laparoscopically and then have to turn around and require standard entry. *Zero hitches in the plan!*

2) If the ducts that lead to the liver and pancreas need to be flushed, Voila!, there’s plenty of room to do that.

3) Another scar to rock on the beach! No, not really. But yes, really. For the damage this little gallbladder time bomb is turning out to be, removing it will be worth the battle scar. And let’s be real. I play organ favorites. I just like my liver and pancreas WAY more than a sputtering, malfunctioning gallbladder. So there!

4) The bile produced by the liver to aid in digestion will still happen. Instead of going through the gallbladder, it will empty into the small bowel to begin its digestive aiding job there. (Whew! Thank goodness I still have that part.) If I had a colon still, I may experience looser stools. As an Ileostomate, this is already the case, so less of an issue for me.  Score for being an Ileostomate!

Things I am going to keep in mind moving forward is diet. I am already an infrequent fatty food enjoyer. That’s one point for me. Plus we officially live 1000 miles away from my very favorite corn dog stand located in Otis Oregon. So in that regard I’m safe. But it’s those festival, Oktoberfest, onion ring, occasional joyful moments that I will have to be more mindful of. *Gasp! * Don’t forget ~ SUPERBOWL!! Well, it must be time to perfect those boneless hot wings. <—-See? I love food. And I will continue to do so thoughtfully.

In the end I am grateful that I am not having a bowel surgery. For ONCE I’m not going in for IBD. I am grateful that being an Ostomate is actually sort of helpful in this case. I am grateful that the surgeon doing my procedure is also top notch in Ostomates of all sorts. (Which is a BIG deal to me.) I look forward to improved liver function and no more painful stones passing. I am glad to be having this done at a time when the rest of my world is relatively calm. I am super grateful that my husband is able to take time away from work to care for our children.

Most of all I look forward to getting back to regular life. I have plans in action that I want to see through and a life that needs living with me at my best.

Ostomy Pants!

How I got all crafty and refashioned the waistband of my pants to fit better without rubbing or cutting into my stoma. Yay! I can wear my jeans.  Check out this really cool way to make Ostomy Pants!  (Or fix any waist band really)

After all, you are perfect just the way you are.  Make your clothes fit you.  Not the other way around.

Ostomy Tag Q & A

I was tagged by Megan of Front Butt You Tuber to participate in the Ostomy Tag Q & A. Basically answer 10 questions about being an Ostomate and tag three more Ostomate friends.

So, thank you Megan of Front Butt You Tuber for the nomination. If you want to find her go to: https://www.facebook.com/thefrontbuttyoutuber?fref=ts

In return I nominate:
Christy of Ostomy on the Track https://www.facebook.com/OstomyOnTheTrack?fref=ts

Marisa Lauren Troy of JournalingIBD https://www.facebook.com/JournalingIBD?fref=ts

Stephanie of The Stolen Colon https://www.facebook.com/thestolencolon?fref=ts