Staycation of our Dreams

The lives of the chronically ill are full of excitement. We get to be social, have experiences like no other, see things others never get to see, and travel. Am I making you want to take the bait? If I left the descriptions just as you see them above, it may sound like a vacation.

See a couple of weeks ago, there were a lot of people on vacation as Spring Break 2019 was in full swing in our area. We got to see their wonderful pictures on social media: sunshine and sandy beaches, luscious landscapes and plates of food to make one salivate.

My husband and I didn’t want to see the food part so much. We had more of a staycation as it’s called. We conveniently scheduled scopes for ourselves: me an ileoscopy, him a colonoscopy. Both of us were due to have them, and since taking off from work is more inconvenient than using the already given time off that Spring Break provided, we just made a scope sandwich with mine being on a Monday and his on a Friday. We didn’t even allow ourselves time for a weekend trip.  I don’t know about him, but I tried to avoid anything to do with food. That included feeding my son the day before my procedure. (I had to be on clear liquids all day.) Daddy had to take care of it. I have the habit of popping food in my mouth during the preparing of it, and I didn’t need to take that chance.

On clear liquids, you’re allowed Jello. Of course, it can’t be red or purple in color (the best flavors). I don’t care for lime. And the only other color left where I was shopping was orange. Let me just say that Jello is delicious when you’re hungry. Well, until you get to that third bowl. And fourth. Okay, Jello isn’t delicious. It didn’t take me long to remember why I don’t care for it. I was slightly nauseous and dizzy by the next morning and more than ready get the test over with.

(Here is where my staycation was social.) The time before the test, when you’re in holding and waiting your turn to be scoped, that went well. Smoothly actually. They let my husband come back with me. And they respected my wishes to remain unsedated (unlike the time before when the anesthesiologist got his undies in a wad when I said I didn’t want any drugs). They did put an IV access which I suggested they do to make everyone see that I’m not hard to work with and to make them feel better to have access if something were to happen to me. But I just don’t get being drugged for a test that takes five to ten minutes and that, at most, is uncomfortable right at the end of the test and with all the air they blow in your intestines to widen it for visibility. I know because I’m awake watching the whole thing. (This was my staycation experience and where I got to see things most other people never see. Exciting, I know!)

The travel part of our staycation was not so much getting to the hospitals for our respective procedures but navigating the hallways once we got inside. It seems that every time I’ve been, the location is moved. However, it’s not the location but the areas surrounding it (where once was a door is now a wall, the entrance is moved 25 feet down from where it used to be, the restrooms were there at one point but aren’t there now) that actually change giving the illusion that all is different. I used to be good at getting around the hospital, but now, thankfully, I don’t have to go enough to know where I’m going.

Although this isn’t the ideal spring break, things went well. My husband did get away for a little while and spend time with his parents who live a few hours away from us. This gave me some “me time” as well as our son was with him. We made it to our procedures on time, the tests went well, and we got good results. We even took the time to enjoy a movie as our son stayed with his grandparents.

The Lost Lion

It's been a few weeks since I've been able to sit down and take a moment to focus on writing a blog.  Being a mom to a busy two year old who wants to be involved in all you are doing because he is so curious about everything, a wife to a basketball coach who takes his job seriously as he should, and there was the whole Thanksgiving and Christmas thing right?  But there's this picture that I've kept on my phone because I felt like it would make a great visual of an idea for a blog post.

The photo is of a wooden lion.  It's a puzzle piece to one of my son's puzzles.  I didn't even know this piece existed in our home.  As long as I've seen the puzzle, the lion had been missing from it.  But my husband assured me that he had seen the lion at one time.  Where it was the next time he saw the puzzle was the mystery.  And there was no way that we were going to find out from our (then maybe a one year old) son.

How did this item get found?  It was found by me, the one who'd never even seen it in the first place.  I was vacuuming and my foot bumped the back of the recliner and something moved underneath the fabric.  I had to investigate.  Of course that involved digging into the crease between the seat and the back of the recliner which to me can be rather gross with crumbs and lint and who knows what.  But I wanted to find out what was in the chair.  And then I was able to reach far enough to grab it.  I was rather amazed as I never thought about pulling out the missing piece of the jungle puzzle.

I set him down and immediately took a picture to show my husband that the lost lion had been found.  The lion we hadn't really thought about unless our son got out his puzzle was now before us.  And then I just looked at the picture and thought, that's people, that's those who suffer with chronic illness.  We get lost.  We go day after day focusing on what ails us.  There are numerous doctor's appointments (with numerous doctors sometimes).  We get blood drawn so much and maybe spend so much time in the hospital that we feel more like a pin cushion than a human being.  And we take so much medication that we feel like we look anything but human beings.  Essentially, the idea of living beyond the day to day is lost.  A life beyond illness is possibly a dream but definitely not a reality and not something we believe we'll find.

I think that was me for a long time.  It was a big factor into feeling lost after graduating high school.  It seemed like so many of my fellow graduates had these goals and dreams beyond high school.  I was still reeling from just trying to make it through high school with what health I did have.  And certainly wondering when my next flare was bound to happen.  How does a person find themselves amidst all the chaos of dealing with a chronic illness?  For me, it took a long time.  It's like I lost the idea that I could be more than a person with Crohn's Disease.  As a kid, I wanted to be this or that, but by the time I got to high school, I had no idea what career path I wanted.  As volatile as my Crohn's was, I had no idea how I would ever be able to succeed at anything I tried.  There was a lot of fear for the future.

There's still fear to some degree.  But now, I look back and think that it all happened for a reason.  The ups and downs all happen to form you into who you are.  And they made me see God.  When I got so sick that all that was left was to remove my colon, I realized He was all I had.  And of course, all I needed.  As long as I had Him, He'd place the right doctors and medical staff around me and He'd give me the peace I needed in order to make a life changing decision, one that didn't make sense to most people.  And with that surgery, I got my quality of life back in order to fight other battles as I would get lost again in that even though I felt great physically, emotionally I was still struggling.  Friends and family were having great things happen to them, things that I had longed for for a long time: getting married and starting a family.  And I wasn't happy with my career choice.

Again, I was lost in a massive gray cloud.  But not because God had left me, but more so because I still wasn't giving myself to Him and letting Him do what He does: guide my life.  It's sort of like I thought that if I had my health back, life would be great.  But it just allowed me to see that there was more buried inside than I even knew about.  And the only way through was prayer from me and others and trusting that my timing would always be imperfect, but His will always be PERFECT.

And just think, the finding of a lost lion made this blog happen.

My Happy (or is it angry?) Toddler

I have a two year old (closer to the three side now).  To say that his two year old self is terrible is definitely not true.  Challenging, as he's frustrated by things we can't understand? Yes.  Neediness and independence bouncing back and forth every few seconds with "Mama, help me!" and "I do it"?  Oh, yes.  Moodiness?  As in: I don't know what child is going to show up at any given moment??  Oh...my...goodness!  The twos are the times that warm us up to the threes and fours from what I hear.  I don't want to say they are terrible because I feel that that is heading my way very soon.

Round One!  My day starts out with curiosity as to what child I'm going to walk in on in the morning.  If I have to wake him up, I have to brace myself for the incessant whining.  (He already hates mornings or at least being awakened.  Can't blame him there.  He gets that honest.)  If he's awake as is common on the weekends, we are usually in good shape as he is more cooperative.

Round Two!  We're on to the first meal of the day.  Will he want to eat or will he frown at every options placed before him?  Here, during the week, we are usually in better shape.  I make him smoothies as they are transportable and a great option if we're running behind schedule, they are nutritious (milk, peanut butter, banana, yogurt, that sort of thing), and most important, he loves them in whatever mood he's in.  The weekends are more hit or miss as I try to give him other options: fruit, oatmeal, eggs, all of which he enjoys most of the time.  But there are times that he just refuses more than a bite or two and just wants milk.   And then again, sometimes milk is a bad option, too.

Round Three!  Lunch time is very much like breakfast.  Most of the time he is at the baby sitters for this one.  But on weekends, I get to take over.  Now, I know he loves fruit, he loves peanut butter and jelly (or banana) sandwiches.  But sometimes, I think he must forget that he loves these things.  He'll take a bite and say he's done.  However, if I offer some junk food, he'll relax in his seat and be ready to chow down.  (For the record, he doesn't always get offered PB and J.  And I definitely don't give him junk food after he refuses the more nutritional stuff just so he'll eat.)

Round Four!  Nap time!!  One of my favorite times of the day.  Of course, it's one of his least favorite.  Nine times out of ten, he whines and cries at the mention of it.  "I don't want to take a nap!"
To which we say, you need to and you're going to.  He at least has to lay down, which usually ends up with him conking out within half an hour.  However just yesterday, he was playing hard and then the next thing we know, he's telling us he needs to go take a nap.  It had me stunned.  I was like "well, okay, that's great.  Thank you for being so willing to take a nap!"

Round Five!  Yet another meal time.  Again, it's similar to the others.  He has the foods I know he loves: macaroni and cheese, carrots, even broccoli.  But yet he seems to have memory lapses when he sits down to eat.  "I don't like it" he says in a whiny voice and sometimes some very convincing tears.  If we can get him to eat, the next thing you know, he's saying "I like it, Mama.  I like it."  And I'm like, well what was wrong with it a few minutes ago.  If he's still stubborn about eating, we'll pull out the "you'll get something special if you eat" and show him the said item.  Sometimes this works and most of the time it doesn't.

Round Six!  Bedtime.  It's much like nap time nowadays.  He was very good about going to take his bath (although he's never in his life time liked bath time), and then getting a book and going to bed right after reading.  He still loves the book part every night, but we never know the response to bath and bed time.

All of this makes me think back to the times I spent being medicated with steroids.  My moods varied greatly.  One minute, I'd feel calm and at ease, and the next thing I knew, I was raging (maybe not outwardly, but definitely inside).  I was easily frustrated.  If something wasn't going as I thought, I didn't handle it well.  I didn't want to be angry and irritated by seemingly nothing, but it seemed that I couldn't fight it.  There was whining from myself I'm sure.  There was definitely a lot of "Why Me's?" especially after I saw how puffy my face was from all of the swelling.  And there were many tears after having the repetitive relapses.  My parents may have awakened everyday wondering what child they were going to see first.  It was like the whole Dr. Jekyll and Mr. Hyde deal.  I can, with certainty say, I never pushed away food like my son does though.  That's one thing we don't have in common here.

Somehow, the people around me dealt with my shortcomings and emotional struggles throughout a very rough stage in my life.  May God grant me the grace to deal with my son's various life stages, and come out with sanity on the other side.

The Significant Other

Recently, my husband and I celebrated 8 years of marriage.  It's not a long time to most people, but it is a feat.  One we are both proud of.  Marriage is HARD.  Things can get ugly.  Things can get messy.  And life is going to happen.  There is no Cinderella story hiding anywhere.  Throw a child or two or...things get even more interesting.  And even harder and definitely messier.  How many times have we went to bed with dishes in the sink (which I really don't like because it's like things are left undone), but we are just done after we get our little guy in the bed.  And I really am when my husband isn't here in the evenings to help out.   

Now lets throw in that "life happens" bit.  Some of us (probably all actually) have had life happen to us before we ever start dating and get married.  Life happened to me at 14 years old.  I was side swiped by the bad health semi truck and diagnosed with Crohn's Disease.  Then, it would come back and run over me a few times in the form of relapses. 

Today, I thought back to the time I told my husband about having Crohn's Disease and then of my ileostomy.  I've written a blog about it previously which you can read here.  And then my husband shared his view of learning about this which you can read here.  It was awkward as it's not really something I talk about with people.  It's more of something that gets mentioned in conversation when it's a need-to-know situation.  People don't always respond to this sort of conversation with welcome arms.  But if I was going to be in a serious relationship with a guy, he needed to know.  I kept the explanation simple, I had my spare ostomy bag and other supplies there to show him, and I left it to where he could ask questions if he needed to. 

This information could have scared him off.  He could have walked away right then.  But he didn't.  He didn't even seem phased by the news.  Maybe it was just a good poker face.  I don't even remember discussing it beyond that very much.  It was just like he thought, "Okay, this is a part of her.  She's doing well.  And if she has a change of circumstances, we'll deal with it." 


People, this is the way it should be.  Your special person may initially run away scared.  That's understandable to me.  News like this, when it's not something in that person's normal environment, can be overwhelming.  But that person shouldn't stay in that mindset.  And you don't want to be with a person like that either.  If they blow you off in bad (or potentially bad) health before you get married, they sure won't stick around if you do get married.  The vow says "In sickness and in health".  Having health issues isn't good.  But in some ways, it could be a blessing.  You get to see where your significant other stands on that issue before you commit the rest of your life to them. 

Bend So You Don't Break

Almost a year ago, I wrote a blog post called Living Another Normal.  It was regarding my experience of life after having my large intestine removed and having an ileostomy bag "in its place."  With that I was forced to learn how to bend my mind enough that I could learn to live with something few people, especially as 20 year olds, have to live with.  I had to learn a new routine of changing out the ostomy bag every few days, and if it required changing not long after it had been changed (in other words, I sprung a leak), then I had to learn to adapt quickly and get it changed again.  If it did this repeatedly, I had to learn what I was doing wrong to keep this from happening as it's not good for your skin.

The thing with this experience is that it's not just relevant to ostomy bags or to medical issues of any kind.  Living Another Normal, that's almost a daily thing.  When a couple gets married, they have to learn to live with another human being that is a complete opposite of them.  One spouse likes to sleep with background noise, the other wants complete silence (but still gets background noise as the other spouse snores), one wants extra blankets on the bed because they must be cold blooded, the other barely wants sheets on the bed, one wants sports on 24/7, the other loves Food Network (we all know I win that debate).  We learn to live with the differences of that other person.  (We just may not like it.)  We bend a little or we would just break.

When children enter the world, whole lives are changed (that's an understatement) including those of the grandparents, aunts, uncles, whoever is close with the parents basically.  There are frequent diaper purchases and stinky diaper changes and trying to figure out which diaper works best and doesn't cause your child to break out in an awful rash, doctor's visits because it seems like the child always has something going on and there is an overabundance of online articles that shakes first time parents to their core, overtaking the living room with toys that get picked up before bedtime but you wouldn't know it by the next morning, buying the next size up in clothes what seems like every few months as these kids literally grow overnight...we could go on and on.  We learn to except that kids are expensive and messy and that's our new normal.   We bend a little more because the stress of raising kids would surely make us break.

And of course there are life events that aren't really major but can provide a thorn that pokes a person at the worst times.  For example, a couple of weeks ago, we lost our mailbox after someone hit it.  The individual was okay, thank goodness.  And they took care of the cost of replacing the mailbox.  But until we could get that done we had to deal with getting our mail sent elsewhere.  (Like I said, not a big deal, just an aggravation.)  Another issue we had around that time was with our car.  My husband drops off our son at his babysitter's house and the car failed to start up when he went to leave.  Unsure of the cause of this issue, he called a tow truck, and the gentleman jump-started the battery where my husband could then start the car and take it to the mechanics.  That's where I come in.  I came to pick him up there and take him on to work.  He's a teacher so he had to be in contact with school so they could cover his classroom until he got there.  The school had to bend as the issue was out of anyone's control and my husband's classroom needed supervision in his absence.  My husband had to bend as his normal morning routine suddenly came to a halt due to what we learned was a dead car battery.  And I had to bend as I also was going to be late to work.  But that's life and if any of us had been staunch against giving a little, life would have been even harder.  We had to learn a new normal for just a temporary time.

Life happens.  We've all heard that and we've all experienced that.  And it's true.  If you're living, life is happening, sometimes to us and sometimes through us.  We choose how we react to it.  If I had been anti-ostomy, well I'd probably still be a very sick individual.  I wouldn't be able to live like I do now.  I'd still be on awful medication.  But I decided to bend (more than just a little).  I chose to take an option less favored by most.  And that allowed me a new normal, a new life, and kept me from breaking.

Being Okay With Being Me

I was listening to a podcast this morning, and the speaker mentioned about how she didn't really like who she was.  She was a shy and quiet person who didn't deal well with people I guess you'd say.  She wanted to be like others: outgoing and the life of the party.  And then God spoke to her one day.  He told her she was the way she was supposed to be, and that by being that way, she was spared the introduction of things in her life that could have potentially ruined her: exposure to outside forces that have a way of changing people for the worst and taking over their lives in all areas over time.

This spoke to me.  I find myself like her.  As a child, I was painfully shy.  I wouldn't go up to anyone and start a conversation for anything unless it were my immediate family.  I was probably in high school before I'd order food for myself at a restaurant.  It's sad I know, but so so true.  Talking to people just didn't suit me.  I'd rather stay home than be in a crowd any day.

I can't say that it's not still painful sometimes, but I've had to step out of my comfort zone to be an adult and run a business.  Not talking to the client will never get a business going.  Thankfully, texting is a "thing" and it definitely works for my personality.  I can "talk" all day through words on paper and screen.  But don't try to get me to hold an all day seminar somewhere.  That would drain the life out of me before I even got started.  Plus, I still Do Not Like crowds.  My husband is a basketball coach.  This might seem selfish, but sometimes, I just can't go to the games.  I can't deal with all of the activity and lack of personal space.  He has come to understand this about me.  And he is disappointed at my absence, but he understands because he feels the same way by being a home all day long.  He has done it, but it doesn't feed him.  He likes to be out an among others.  He doesn't seem to need to talk to them necessarily.  Just being out of the house helps him keep his sanity.

My need for solidarity has kept me sheltered from things that I would have been gullible enough to get sucked in to.  Him wanting to be out with other people has always kept him too busy to get himself into trouble with the world around him.  We are who we are meant to be.

Of course, when I was going through all of the ups and downs of Crohn's, I wanted to be someone else.  I wanted to be my classmates who were healthy, who were not afraid to go out of the house, who weren't having to take medicine everyday, who didn't have their physical appearance change due to prednisone, and who could eat PIZZA!  I wanted to be my sister, my twin, who didn't have to deal with the devastation of Crohn's.  I wanted to be who I was before Crohn's attacked my intestines.   Why did I have to deal with this?

And now that I have an ostomy, there have been plenty of times I've just wanted to take the ostomy appliance off.  I've wanted my pre-ostomy body back that didn't need to have an ostomy appliance attached to me.  Then I remember that pre-ostomy, I was sick and wishing I could have my life back.  What did the ostomy surgery do for me?  Essentially, it gave me my life back.

All of this is to say, that I don't know why I am the way I am necessarily and why my life was hit with Crohn's Disease.  But there is a reason.  Right now, I'm able to share what I deal with and think about by having Crohn's and an ileostomy.  And hopefully, someone out there is reading this and thinking "Okay, someone in this world thinks like I do, and they deal with things that I've got to deal with.  I can do this, too."  We don't need to change ourselves as much as we need to embrace who we are meant to be.

"Mama's Diaper"

I've had an ileostomy now for over 11 years.  And sometimes, I don't want to think about it too much.   I don't know what people's reactions will be to it.  I'm sure there are those who think that I shouldn't have had such a surgery, and that I should have tried other options (although I don't know what those would have been at the time.)  The deal is done people.  There is no need to say what should have been done.  My large intestine can't be put back in.  Nor do I want it to be.  That thing gave me nothing but trouble: sending me to the bathroom at all hours of the day and night, being a literal pain in the rear, and affecting my overall health in ways that I believe I deal with to this day.

Also, it probably is a source of discomfort for some as there are those that don't want anything to do with medical talk.  There are those that don't have the capacity to deal with the gruesome details at any level.

My husband was like that, but I think after almost 8 years of marriage, he's starting to come around.  He didn't want to see me changing my ostomy bag for the longest time.  Then one morning recently, I woke up with a leak and time was not on our side.  He just had to let me do my thing right there with him in the room.

And then there are others who probably just don't understand what it is even as I'm trying to explain it.  I'm not sure I would have.  I had a very detailed and visible amount of information given to me.  Also, I was able to get a first hand account from an ostomate over a period of time where I felt free to ask any and all questions that I had of her experience and what I could expect.

Of course, sometimes talking about it is beneficial not only for me, but hopefully for others as well.  There are times that I don't mind going into some detail on what an ileostomy is and why I have it.  I wouldn't have had as much confidence and security in having the surgery and dealing with life with an ostomy if I hadn't had the information I was given. With this blog, it's my goal to share some of my experiences.

One such experience happened several years ago now, when my oldest nephew was closer to my own son's age (2).  Sometimes things happen to where others might learn about your ileostomy whether you want them to or not (leaks at work or maybe the pouch manages to poke out from under your clothing, for instance).  The latter incidence would be the case I'm referring to.  I'm not sure what happened exactly, possibly just stretching and my shirt raised up enough that the bag was showing.  The little guy saw it and looked sort of confused.  He'd never seen anything like that before.  Somehow, I managed to come up with a way to relate it to something he understood.  I called my bag my diaper as, at the time, he was still wearing a diaper.  That explanation seemed to satisfy him.  There were a few times after that, that he would point it out and say it was my diaper.  I wonder if he still remembers that.

My son has seen my ostomy bag as well.  He seemed to have that look of confusion the first time he recognized it.  I told him the same thing I told my nephew, that it was "my diaper".  He seemed to be content with this explanation as well.  He never mentioned it again until recently when I was getting dressed one day.  He looked at me and then at my husband and said "Mama's diaper".  It caught me off guard as, like I said, he hadn't mentioned anything about it since I had told him what it was in a way that he might could relate.

There are days that I don't want to deal with it or think about it.  But I have to.  It's here for good.  At least I can get a smile and a chuckle from the innocent recognition and understanding that a little guy can offer.