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Spoon Shortage Guilt

Well, it’s Friday! I made it! Last week was a debacle with the whole “small bowel obstruction/emergency room/miss 3 days of work thing”, and when this past Sunday rolled around, I knew that the upcoming week was going to be a crazy one. And I knew that by the end of the week, I’d be out of spoons.

How did I know? 30 years of chronic illness and you get to know your limits pretty well. So I knew that between a late night of Cavs basketball on Sunday, a late night of Cavs basketball on Tuesday, a comedy show on Wednesday night, a social event on Thursday night followed by more Cavs basketball, learning a new software and a deadline at work,  being a wife, mom, daughter, friend, neighbor, advocate, …. Well, let’s just say that I went WAY OVER BUDGET with the spoons I knew I had to work with. Am I’m paying for it.

My skin is flaring – bad. It hurts to walk, it hurts to sit, it hurts to EXIST. I’m heading to the doctors office within the hour to get steroid injections in unmentionable places, all in the name of trying to function this weekend. I’m exhausted. Humira makes me SO TIRED. Not just “sleepy, want to doze off at my desk tired”, but “trying to walk underwater with toddlers tied to my calves tired”.

So I sit here,  trying to decide if this is my fault, or if I’d still feel this way, even if I’d gotten 8 solid hours of sleep every night and had no stress to deal with this week. AND I JUST DON’T KNOW. That’s where the guilt kicks in.

Because I know when I get home today, the house needs cleaned, bills need paid, the diva child needs tending, the husband wants attention (and has had a rough week of his own and surely doesn’t want to pick up the slack since I don’t feel well), the mom and the grandma haven’t heard from me and want to know what’s up, the best friend will ask what I’m doing tomorrow night, the blog needs posting and just AHHHHHHH! These are all normal things. Good things. Things I’m incredibly blessed to have in my life. But, I. Just. Can’t.  And maybe it’s my own fault. And I feel bad.

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All those nights of basketball – I didn’t HAVE to stay up. But I wanted to. For a Clevelander, this is history making stuff. I don’t want to miss out on water cooler office talk, fun social media memes, high fives in my living room. You get it. The comedy show – I could have stayed home. But I didn’t want to. I’ve loved Dave Chappelle fo’ever! This also was a maybe once in a lifetime opportunity. The social event – HAD to go. Missing was not an option. And the rest of the stuff. Well, it’s my family, my career, and my passion. Again, I had to.

I hate feeling like I must choose between things I HAVE to do, and things I WANT to do. Most almost 40 year old women don’t have this issue. And the sucky part is that up until a couple years ago, I didn’t have that issue either. For someone with a “chronic” illness, I was for all intents and purposes, healthy. But then my body decided to wage war again, and it hasn’t let up since. And I’m trying SO DAMN HARD to fight back, to take ground, to win some battles. I’ve had a few victories, but I feel like I’m losing ground. I’m stubborn, and I refuse to concede to my body. So I struggle. I put on my smile, pop some meds, get some injections, move slow as molasses and keep putting one foot in front of the other. 

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But there’s a trail of spoons behind me, and I’m desperately scanning the horizon for the next spoon oasis.  I’m running short…

Christmas Re-post Re-post

Since I first posted this back in 2006, I’ve come back to it almost every Christmas, to remind myself that the birth of Christ wasn’t all angels and good-tidings, and this year is no exception. Coincidentally, way back in 2006, I had also just gone through a major surgery, and was in a place where things were in limbo in my life and I felt unsettled. Today, I feel much the same way. This year has thrown me for a loop – major health problems, surgery and several complications, loss of a job, and many personal experiences that leave me feeling more “Bah Humbug” than “Joy to the World”. But again, the article written by Phil Ware is a resounding reminder that Jesus came into this world in the midst of turmoil, despair, and insecurity. The “Good News”, for all people, is that His love isn’t discriminatory, or based on our circumstances, and He can relate to our brokenness as much as to our joy. That brings me comfort this holiday season.

From Dec. 2006: I came across this article that so eloquently conveys thoughts I’ve been pondering in my head all week. I’ve had a hard time getting into the Christmas spirit this year. The world seems to be spinning out of control around me. So much is uncertain…things aren’t bad per se, just unsettled. I want to feel the “warm fuzzies” and genuinely want to exhibit “goodwill toward all men” in my thoughts and actions. But it’s not been easy. I haven’t been able to “psych myself up”. So I’m thankful that this article and some revelation from the Holy Spirit have reminded me that while the story of Jesus’ birth is about peace, joy, grace and salvation, it is as much about turmoil, tribulation and brokenness.

 

As the article says, “God didn’t prepare a pristine time where his Son could be protected and coddled!”. What makes me think I deserve a life free of difficult and sometimes scary circumstances and situations?

 

A Free-For-All Christmas by Phil Ware

 

Have you noticed that the Christmas season is more like “let’s get ready to rumble” than it is “O holy night”?
The midnight releases of video consoles, video games, movies, books and specialty gifts have caused rowdy stampedes. We’ve seen grown adults trample each other and get into fistfights over places in line and who got to a toy first. Yikes!Then from many who come from the normally dysfunctional family, there is all the family baggage that gets unwrapped with the Christmas presents. Innocent statements are misinterpreted resulting in hurt feelings. Stiletto sharp innuendos are used to carve up folks who are supposed to love one another. And then fights break out because someone corrects or disciplines someone else’s child. Double yikes!

 

Even the pilgrimages back to Bethlehem to celebrate the birth of Christ are complicated by the ongoing war between Jews, Muslims, and Christians in the very place where Jesus was born. These tensions threaten all of world peace in the land where the Prince of Peace lived, died, and rose again. Triple yikes!

 

While there is much about the Bible’s account of Jesus’ birth that is precious and touching, I believe it is also important to remind us that the Jesus story is not all sweetness and light. One of the most horrific stories in the New Testament is centered around the birth of Jesus. This story is sometimes called “The Slaughter of the Innocents.”
Jesus’ apostle Levi the tax collector records it this way:

 

Herod was furious when he learned that the wise men had outwitted him. He sent soldiers to kill all the boys in and around Bethlehem who were two years old and under, because the wise men had told him the star first appeared to them about two years earlier. Herod’s brutal action fulfilled the prophecy of Jeremiah:

 

A cry of anguish is heard in Ramah — weeping and mourning
unrestrained. Rachel weeps for her children, refusing to be
comforted—for they are dead. (Matthew 2:16-18 NLT)

 

What are we to make of this?

 

The Lord himself said, “And you will hear of wars and rumors of wars; see that you are not alarmed … (Matthew 24:6 NRS). We live in a free for all planet where sin has marred every level of relationships. The whole story of Jesus’ coming is tied to the real world in which we live. God didn’t prepare a pristine time where his Son could be protected and coddled!

 

Jesus was born into a vicious world of hate, war, struggle, and jealously. These fruits of hell would be ever-present for each step he took on the little blue planet he created. God had to use an angelic vision to warn Joseph and Mary to take the baby Jesus away to prevent his slaughter. Even from the first moments of Jesus’ arrival, even while listening to the angelic choir singing “gloria in excelcis deo”, we hear the rumblings of Herod’s jealous and paranoid bile.

 

So when things seem bleak or difficult or fractured in the coming days of Christmas, please remember, these are as much a reminder of why Jesus came as are the sweet sounds of angels, the excited presence of Shepherds, and the mysterious journey of the magi. Jesus came to save a broken world. He didn’t do it from afar, but from up close … in person … beginning in a manger … going to a cross … before conquering death and leaving behind an empty tomb.

In response to negative press about ostomies…

Here I go playing devil’s advocate again…
Much Facebook drama has been stirred up over the Cincinnati police using pictures of colostomies as a “scare tactic” to try and set teens and young adults on the straight and narrow. I posted my reply in an earlier status and you can go back & read it if you like.
As a result of the “outrage” several organizations have launched positive awareness “campaigns” encouraging people to write to the Cincinatti police with their positive portrayal of an ostomy, and encouraging ostomates to post pictures of themselves, many with their pouches hanging out, to prove that they are still attractive and sexy.

Let me be the first to say that I am ALL FOR THIS! I’ve spent the greater part of my life since the age of 17 involved in organizations that support ostomates, and work to promote positive portrayal of ostomy surgery.

But what strikes me about all of this is WHY does it take something negative like this to prompt people to be “loud and proud” about their ostomy? Shouldn’t we all be positive, loud & proud every day? I’d venture to say that our every day actions and positivity, shown to our friends, family, and strangers alike would go a long way in negating the stigma that many associate with ostomy surgery. If we were just matter-of-fact about our medical challenge, sharing it openly and honestly in a positive light to those around us, perhaps the public at large wouldn’t have such a skewed perception of our reality. Unfortunately, far too many hide their ostomy, hide the reality of it’s life saving ability, and only bring it out when it’s in response to something negative like the recent events in Cincinnati. Why? Why not be proud EVERY day?

Jaidin and Jesus: The Passion

I had the most touching spiritual conversation with Jaidin on the way home from church Wednesday night. I asked her about what she learned in Girls GEMS club, like I always do, and she shared her memory verse and a few tidbits from class. And then she got real quiet and said “You know mom, you should have been at chapel today at school. You’d have really liked it”.

“Oh yeah”, I said. “What was it about”?

“It was about Palm Sunday”, she replied. “About how Jesus rode into Jerusalem on the donkey, and how the people were so happy to see him, so excited they were waving palm branches and laying down their coats for him. Pastor Riley brought palm leaves, and each of us got some. It was pretty neat. But then he talked about how the same people that were so excited to see Jesus  were the exact same people that a week later were yelling ‘Crucify him! Crucify him!’ ”

Then she said the most amazing thing to me.

“You know mom, I hope I’m never one of those people who praises Jesus and says I love God, and then turns around when things get crazy and does something like deny him, like those people did.”

Wow! I was blown away. And convicted. Because how many times have I totally been on fire for God, praising Jesus and following after Him, and then BAM! one little change in circumstances or a bad influence from someone else and my tune changes. In my years as a Christian, certainly I’ve gotten better about not being swayed by the wind or tossed about by rough seas. But I still strive to have the kind of faith that is not shaken, no matter the circumstance.

I told Jaidin that I would pray for her to always have faith, to always do the right thing and to never deny Jesus. But I also told her that there will be times when she will probably doubt, and not do the right thing, but God gives second (and third, fourth, fifth…) chances and as long as we’re truly sorry about whatever it was, He forgives us.

She said she knew that and was so glad that Jesus gave us a second chance through the crucifixion. Then she said “Do you think me & you & Daddy could watch the Passion movie?”

I hestitated, because while I think it’s a tremendous movie, I also think it may be a bit too much for an 8 year old.

“How do you know about the Passion of the Christ?” I asked

“Some of the kids in my class were talking about it at recess”‘ she said. “They said it was a movie about Jesus and that it made Riley’s mom cry.”

So I told her, “It made me cry too. I’ll talk to daddy about it. That movie might be a little too graphic for you.”

She was quiet for a minute, and then said “By graphic, do you mean real?”

Then I got quiet. Yes, REAL. That’s exactly what I was thinking.

As I drove quietly for a minute, the Holy Spirit spoke to me.

“The crucifixion WAS real. She’s asking for more than a movie. She’s asking you to help her understand exactly how much her sin cost.  To see what all sin cost. Show her.”

I was floored.

So… we’ll be watching The Passion of The Christ soon as a family, and I know that God will prepare her little heart to receive the full message of the Cross (and hopefully not not have nightmares!) If you have kids – have they seen The Passion? What was their reaction. What kind of a discussion did you have as a family afterward?

Somedays…

having an ostomy really stinks. (Yes, literally and figuratively). Yesterday was one of those days. Due to my own bad judgement Sunday afternoon ( I ate pineapple on pizza at the in-laws after church), I had a partial obstruction for about 24 hours. The bloated feeling started around 8pm Sunday night, followed by the cramps, the nausea, and all the other loveliness that goes along with a bowel obstruction.  By 1:30am my pouch was leaking because my abdomen was so distended and hard. Nothing more fun than rolling out of bed at that hour, fumbling around to find the ostomy supplies, banging into the bathroom door (and waking the dog in the process), and trying to do a complete wafer & pouch change in the light provided by the plug in nightlight because if you turn on the light the dog will think it’s morning and you’ll never be able to go back to sleep.

I got up Monday morning and manged to put clothes on, make a lunch for Jaidin and get her ready and to school on time. Back home I came and went down to my office to try and work. I sat at my desk with the heating pad, hot tea, and prayed to the ostomy gods to PLEASE relieve my suffering. I answered  the phone with my right hand and massaged my tummy non-stop with my left , hoping with all hope that the blasted pineapple piece would just pop out of there already!!

But the ostomy gods were hell bent on trying to teach me a lesson. At about 10:30am, I discovered that my pouch was leaking – AGAIN, so I headed upstairs to change it. During this change I discovered the fire engine red skin around my stoma that I had missed  in the earlier change done by nightlight. Oh joy. I have some nerve damage in the peristomal skin since my last surgery, so I cant always feel when my skin is compromised. No bueno!

I finished my shift at work at 4pm and moved myself to the couch where I resided the rest of Monday evening. Finally at about 8pm I got a major “movement” and started feeling better. Crisis diverted and no Emergency Room trip.

Today I’m sore as all get out and feel wiped out.  All that from a couple little pineapple tidbits. I know – most of you are saying ” Why in the world did you eat the blasted pineapple, dummy?” (Mom- I see you reading). Well, I ate it because my diet is a bit like playing Russian roulette. 9 times out of 10 I can eat “problem foods” (pineapple, nuts, coconut, mushrooms, etc) with NO PROBLEM. But, occasionally – that 9th time out of 10, they give me an issue. After years and years of a restricted diet due to IBD, and having my ostomy for 19 years, sometimes I feel it’s worth the risk  in order to occasionally eat a food I enjoy. Maybe I’m hard headed. Or maybe some days having an ostomy really does stink…

Having a uterus is a pre-existing condition?

Affordable healthcare should be of particular importance to women this election season, as new insurance-company data dissected in today’s New York Times reveals that women pay much more than men of the same age for individual insurance policies providing the same coverage.

So, not only do I have Crohn’s disease AND a permanent ilesotomy working against me in the health insurance circus, but now having a uterus is equivalent to having a pre-existing condition? LOVELY…

Tidbits

I’ve been blaringly absent from the blogging world the past 9 or so months. A lot has happened that frankly I’m not interested in putting on public display, so I’ve just not written anything. But I miss blogging – for me, it’s a type of journaling, and a way to chronicle important- and not so important things- that happen in my life. So I’m back. Here’s what’s going on as of late – in bullet points – because I’m just not clever enough at the moment to tie them all together with some profound theme as a skilled blogger would do 😉

  • Jaidin started kindrgarten in late August. According to her, school is “awesome”. Uh huh. I’ll ask her round about November, after she’s gotten up early every morning for 3 months and had homework 2 nights a week every week. I suspect her answer may be slightly diferent. Or maybe I’ll be pleasantly surprised….
  • I’m officially a Spa Diva. In June I joined a company called BeautiControl as a consultant. I’d been to a few of their spas, and was looking for a part time job that would allow me to work a flexible  schedule, and BeautiControl kind of fell in my lap. So glad it did! I’m loving every aspect of it – and I’m making $$$. I’m not into shameless self promotion, so I’ll shut up now, but if you’re interested in having a mobile spa in the comfort of your own home, I’m your girl. Give me a call 🙂
  • Spent last weekend in the hospital, or “Big House” as I affectionately call it. Damn peristomal hernia! Always causing blockages. I see my surgeon on Monday to see when we may be able to fit surgery # 15 into my busy schedule. I’m so frustrated with my body right now. And on top of it all, I caught a friggin’ cold while in the hospital (damn nosocomial infections!), so the percocet I’m taking for abdominal pain is doubling as analgesic for my sore throat. Whoa is me…
  • I’m really sick of all the mudslinging going on with the presidential campaign. We’ve become a nation of partisanship, division and powerlessness of the present. In remembering 9/11/2001 today, I long for the day when we are no longer conservative America or liberal America, but are The United States of America.
  • Found this wonderfully awesome ostomy blogger today. Go check out her website and read her blog. She’s candid, fun, and she offers some great ostomy lifestyle tips.
  • Started reading The Shack about a week ago. This book blows so many ridiculous theological views of God out of the water – I’m loving it.  As the back cover says “In a world where religion seems to grow increasingly irrelevant The Shack wrestles with the timeless question, ‘Where is God in a world so filled with unspeakable pain?’ “. Anyone else read The Shack? What did you think?
  • I follow the blogs of  friends of a friend who are in the process of adopting two kids from Haiti.  The entire country of Haiti has been devastated by the recent tropical storms and hurricanes there, and the rescue center where these kids are staying is in dire need of help. Please go read Jamie and Aaron’s blog and search your heart as to whether you can help Real Hope for Haiti in any way.

 

That’s it for now. What’s new in your world? Send me some tidbits…I’d love to hear about what’s going on.