I have a confession…

I’m vain. There, I said it. I show excessive concern for my appearance. And this excessive concern has gone straight to my head.  In particular my eyes.

My eyes look like Natalie Portman in Black Swan.

See the bloodshot resemblance? Um, ya.

I was recently diagnosed with what the doctors believe to be Sjogren’s Syndrome. That’s just a fancy way of saying that my immune system is in overdrive again (Sjogren’s is an autoimmune disease, like Crohn’s disease which I’ve had for 26 years), and it’s attacking the glands that make natural lubricants for my eyes (and other various body parts, but we wont go there).  Not enough tears = red, painful eyes. Nice, huh?

I can deal with the painful. I’ve had 14 major surgeries, intestinal blockages,  hernias and abdominal pain that rivals childbirth. A little burning in the eyes doesn’t phase me. However, looking like I have perpetual pink-eye does bother me. A lot.

See, as far as looks go – I’ve always felt like if I had anything going for me, it was a pretty face. I’ve always struggled with my weight, and coupled with having an ostomy, I knew my body was never going to be swimsuit model caliber.   And I was ok with that. Don’t like my thighs? No worries – I could cover them up.

But I can’t cover up my eyes. Sunglass-wearing indoors, especially in winter, makes  one look a little ridiculous. Every day I’m forced to go somewhere, even if it’s just to school to drop off and pick up Jaidin, where people see my blood-red eyes. I don’t know what they’re thinking – maybe that I’ve got a bad marijuana habit, maybe that I drink to much, maybe that I should get that nasty case of pink eye looked at – who knows. And it shouldn’t bother me what anyone thinks. I mean seriously, you’d think after living 20 years with a pouch full of poo on my side, I’d kind of be over the whole self-confidence thing. And I thought I was.

Until my eyes started looking like cyclops.

I’ve tried all the traditional treatments. Eye drops, eye gel, Restasis, steroids, you name it, and I’m going through Visine like it’s nobody’s business. Nothing’s working. I’m beyond frustrated. Once again my body has failed me.

So there you have it, my confession.  And as a mediocre DC Talk song once said – confession is the road to healing. So please, Lord, heal my eyes….

I Think I’d Like Another Gift

This Christmas I’m thinking about babies. All around me, women are pregnant. My youngest sister in law had a baby this past September. Another of my sisters in law had a baby last night – a sweet, chubby little baby boy. Three of my ostomy/jpouch buddies are pregnant, and an old friend from my dance years is expecting too.

And then there are those who are suffering. A good friend had a  miscarriage a few months back, and just this past weekend, another friend  lost his baby and girlfriend during childbirth.

The miraculousness that God incarnate came to earth as a tiny innocent baby is not lost on me. For the past two weeks, I have been both terrified and excited that I might too be pregnant. Turns out I’m not, and that brought about such a dichotomy of emotions I wasn’t expecting.

See…it’s probably not a good idea for me to have another child (physically that is). After 14 surgeries, this old (at age 35) body has been through enough. I had multiple issues with hernias and other things after Jaidin was born, and have finally been surgery free for the past 4 years. Putting myself through the stress of carrying, delivering and caring for a newborn has the potential to put me in a health situation where I’m out of commission and not able to care for anyone. Jon and I both know this, and had resigned ourselves to the fact that we’d only have one child.

But the past year or so, we’ve been talking about adoption. Jaidin really wants a brother or sister, and Jon and I both would like to have another kid. But there are so many variables to consider. Do we want an infant, or are we open to an older child? Can we afford adoption? (The answer is no, but we couldn’t “afford” Jaidin when we had her, either). Do we go through a private agency, or do we want to do foster care with the intent to adopt. We just don’t know. So we haven’t moved forward.

I just don’t know. Thinking I might be pregnant was scary – what about my health, how could we afford another child, what if, what if ,what if? But part of me was hoping, really hoping, that there was going to be a baby on the way.

The fact of the matter is that LIFE is a miracle, all life.  If you know anything about human science, you know  how perfect everything has to come together in order to conceive. And that’s just the beginning. A series of miracles has to happen every single day of our lives just to keep us alive.  And if you’re a believer in Christ, you understand the miracle that is adoption and the beauty of being “grafted in”.

Children are a gift from God, and I’d really like another gift. I think…

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems

“Every Christmas you always hear people saying what they want and what they bought. Well this is what I want. I want people who are sick with no cure to be able to be cured. I want children with no families to be adopted. I want people to never have to worry about food and shelter & heat.”

 

This is a status update making its rounds through Facebook land. And yes, it’s a wonderful message and wouldn’t it be great if all these things could come to pass. We read it, think “Yes, I want that too”, re-post, and then go about our merry way.

 

So here’s my challenge:

 

If you want sick people with no cure to be able to be cured – did YOU donate any money to research this year? There are countless non-profit organizations and research institutes  that are doing amazing work to find cures for what ails us. Pick the one that’s closest to your heart and send them a check.

 

If you want children with no families to be adopted – are YOU willing to bring an orphaned child into your home, care for it and support it like it was your own? Call the Dept of Family Services or a private adoption organization and see how you can help.

 

If you want people to never have to worry about food, shelter and heat – are YOU willing to donate, time or money, to an organization that can help individuals and families  through this type of a crisis?



 

It’s one thing to make a charitable Facebook post – it’s quite another thing to live it out, isn’t it?

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. -Mahatma Gandhi

Whether misinformed or underinformed, I’m still angry…

I had (and still have) the  most amazingly wonderful WOCN in the world (don’t argue with me – I know most of us ostomates feel that way about our “special” nurse – but Paula IS the bomb!) Let me tell you why.

Back in 1991, some 20 years ago, when I had my first of 14 surgeries, Paula was THE NURSE that changed my life. Literally EVERYTHING I knew about ostomies was due to Paula educating me. There was no internet for me to Google ostomy and get freaked out by all the images that appeared, no online dicussion board to post my questions to, and no Facebook to “connect” with other ostomates. No one told me about the UOAA. My parents had never even HEARD of an ostomy, and certainly we’d never met someone who had one. So what I knew, I learned from Paula.

She helped me find the right type of pouching system. She showed me how to clean my skin, prepare the pouch, and complete all the steps to attach the pouch correctly to my abdomen. She told me what to look for as far as excoriated skin and a fungal infection. She showed me how to empty the pouch, how to fold it up and tuck it in my underwear to keep it secure. She told me it was perfectly fine to get the pouch wet – in a shower, bath, swimming pool, hot tub, ocean or lake. She told me I could wear anything I wanted, eventually have a normal diet, and live a perfectly normal life.

I never knew the extent to which I was blessed to have her until I started volunteering in the ostomy community. Not everyone even gets a WOCN, let alone a spectacular one like Paula. Not everyone comes home from the hospital and finds their first box of ostomy supplies waiting for them on their front porch. Not everyone gets told that getting the pouch wet is ok,  and that wearing it sideways is probably going to breakdown the wafer and cause skin irritation. Not everyone knows they can wear regular clothing, go out to eat and lo and behold, still have sex.

Whether others were misinformed or underinformed, I don’t know. All I know is that through all the work I did with UOAA, and with my job at Ostomy Secrets now, EVERYDAY I hear from someone who doesn’t have the basic information needed to live with an ostomy. Even with the wealth of information and support available online, even with 300+ support groups nation-wide, even with 3 major ostomy supply manufacturers that  all offer patient education materials,  and even with hundreds of professionally-trained, certified Wound Ostomy & Continence nurses working in our hospitals and clinics, people are STILL not getting basic information that is critical to a good quality of life with an ostomy.

And it makes me angry.

 

Does anyone even remember I’m here?

It’s been over a year since I last posted here. I doubt I have any readers left. However, this blog was never for others incidentally. It’s for me. Writing is cathartic and has always been a means of release – of happy feelings and sad feelings. Somewhere in the last year I lost focus and forgot about me, or at least the side of me that needed release. So I’m back writing and expressing myself, in hopes it will help me make some sense of recent circumstances – and find peace in the midst of all the emotions. Happy and sad.

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.

Writing Love on My Arm…

Today I wore my heart on my sleeve. Well, my arm really. At 8am this morning I wrote LOVE on my arm in red lipstick and left my forearm exposed for all to see.

Why, you ask? For Dave.

I met Dave in 2006 at a conference I planned. Like the rest of us in attendance, Dave had medical challenges that he dealt with everyday. This was the first time Dave had the opportunity to interact with others living with similar conditions, and when I met him for the first time in the hotel elevator, he was full of life, thanking me for putting the conference together. Because I was busy with event management “stuff”, I didn’t get the chance to know Dave as well as many of the other attendees, but everytime I saw him through out the week he had a 100 watt smile on his face and a twinkle in his eye.

I would have never guessed that inside, Dave was broken and hurting and had even previously tried to take his own life. Dave and I talked by email a few times after the conference and I tried to keep tabs on him through other friends that had gotten to know him well and had kept in touch following the conference. Then this past June, I awoke to an email the hit me like a freight train. Dave had finally succeeded in ending his own pain.

So today, through the prompting of an event called Love is the Movement, and inspired by an organization called To Write Love on Her Arm, I wrote LOVE on my arm in honor and support of Dave and all of my other friends from throughout the years that have struggled with depression, self-injury, addiction and suicidal thoughts.

Dave, I miss you even now. You left a mark on my heart and a smile in my memory and inspired me to write love on my arm.

For more on Love is the Movement : www.facebook.com/event.php?eid=7693997482

For more about To Write Love on Her Arm: www.twloha.com/the_story.php

Christmas Re-Post

I was reading through past blog entries this morning and came across this post I made last year at this time. I had just had major surgery and was experiencing some pretty major crises and chaos in my life. Truthfully, I feel much the same this year as I did last, and although this year has initiated major growth in me, I know there’s a ways to go.

But this post sums up how I’m feeling now, and I’m reposting it as a reminder to myself that every story has multiple sides, woven together like a tapestry and without the bad, we would never learn to appreciate the good…

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.

Golden

She’s alone tonight,
With a bitter cup and,
She’s undone tonight,
She’s all used up, She’s been staring down the demons,
Who’ve been screaming she’s just another so and so,
Another so and so

You are golden,
You are golden, Child

You are golden,
Don’t let go,
Don’t let go tonight

There’s a fear that burns,
Like trash inside
And you’re ashamed of the curse,
That burns your eyes

You’ve been hiding in your bedroom,
Hoping this isn’t how the story has to go
It’s not the way it goes, It’s your book now,

You’re Golden,
You are golden, Child

You are golden,
Don’t let go,
Don’t let go tonight

You’re a lonely soul,
Inlet of broken hearts
You’re far from home,
It’s a perfect place to start

So this final verse,
Is a contradiction
And the more we learn,
The less we know

We’ve been talkin’ about a feeling,
We both know inside but couldn’t find the words
I couldn’t write this verse,
I’ve seldom been so sure,
’bout anything before

Golden,
You are Golden, Child

You are Golden,
Don’t let go,
Don’t let go tonight

This world is a dead man down (Golden, you are,)
Every breath is a fading crown we wear, (Golden, Child, you are,)
Like some debilitated king, (Golden, don’t let go,)
Don’t let go tonight

Earth Spins and the moon goes round’ (Golden, you are,)
Green comes on the frozen ground, (Golden, Child, you are,)
And everything will be made new again, (Golden,)
Like freedom and spring, (Golden, Golden,)
Hey, like freedom and spring, (Golden, you are, hey,)
Like freedom and spring (Golden, Child, you are,)

~ Switchfoot

No words to describe

I awoke this morning to find this bulletin on MySpace and several emails from my YODAA and UOAA friends.

For all of you who knew Dave Wood and didnt know already, he took his life this last Saturday. One of his friends created a group in his memory . http://groups.myspace.com/davewoodremembered There is also a group on Facebook.According to his father, the funeral will be planned for the end of this week and held at Byles-MacDougal 99 Huntington St. New London, CT 06320. 888-736-7036

His dad is keeping Dave’s phone for the next month for his friends to call. He said that talking to Dave’s friends helps him feel closer to Dave.

Dave was a wonderful man who touched many lives and will never be forgotten.

I don’t have the words to express how I’m feeling right now. .. Please pray for Dave’s family and friends…he will be missed…

Can’t see through the haze around me…

Just Feel Better
~Santana She said I feel stranded
And I can’t tell anymore
If I’m coming or I’m going
It’s not how I planned it
I’ve got a key to the door
But it just won’t open

And I know, I know, I know
Part of me says let it go
That life happens for a reason
I don’t, I don’t, I don’t
Because it never worked before
But this time, this time
I’m gonna try anything to just feel better

Tell me what to do
You know I can’t see through the haze around me
And I’d do anything to just feel better
I can’t find my way
God, I need a change
And I’ll do anything to just feel better
Any little thing to just feel better

She said I need you to hold me
I’m a little far from the shore
And I’m afraid of sinking
You’re the only one who knows me
And who doesn’t ignore
That my soul is weeping

I know, I know, I know
Part of me says let it go
Everything must have a season
Round and round it goes
And every day’s the one before
But this time, this time
I’m gonna try anything to just feels better

Tell me what to do
You know I can’t see through the haze around me
And I’d do anything to just feel better
I can’t find my way
God I need a change
And I’d do anything to just feel better
Any little thing that just feels better

I’m tired of holding on
To all the things I ought to leave behind, yeah
It’s really getting old, and
I think I need a little help this time!

Yeah

I’m gonna try anything to just feel better
Tell me what to do
You know I can’t see through the haze around me
And I do anything to just feel better

And I can’t find my way
God I need a change
And I do anything to just feel better
Any little thing that just feels better

Lump of Coal

LUMP OF COAL
————Lord, I always wonder why
When bad things happen to me,
How could You allow me turmoil
And roughen waves upon my sea?

If you love me, why allow such pain
And unnecessary strife?
I thought that You wanted me to know
Peace within my life.

I know that You really love me,
I know that You really care.
I know that You work in mysterious ways,
I know that You are always there.

“Child, you are pressed upon every side,
But you’re never really broken.
I will keep My every word
On the promises that I’ve spoken.”

“In time, I’ll make it clear to you,
For now, your character I build anew.
I allow such problems to persist
So that you’ll help others too.”

“You are a special lump of coal,
There’s a reason for the storms.
When coal is put under pressure,
Eventually, a diamond forms.”

~B.G. Wetherby

Thanks, Jamie. I’m waiting on my diamond too…

My Symphony

I love how God know’s exactly when you need some encouragement!

A good friend just sent these words to me…and I immediately received them in my spirit. Just what I needed for this moment!

“To live content with small means; to seek elegance rather than luxury; and refinement rather than fashion; to be worthy, not respectable; and wealthy, not rich; to study hard, think quietly, talk gently, act frankly; to listen to stars and birds, to babes and sages, with open heart; to bear all cheerfully, do all bravely, await occasion, hurry never; in a word, to let the spiritual, unbidden and unconscious grow up through the common. This is to be my symphony.”William Ellery Channing

I love it!

Seeking Tranquility

This past Wednesday was a rough day. Emotional overload. Stress over work, whiggin’ out over a UOAA Conference planning meeting, experiencing trepidation regarding an upcoming event, uncertainty pertaining to personal matters, guilt about not being able to help some friends who are in need.
Thursday was a repeat of Wednesday, plus an unexpected, ackward phone call threw me for a loop (ever feel like you’re living in the movie Groundhog Day? )
So Thursday night, Jon and Jaidin headed off to church, and moi took a drive to the beach.
So glad I did… There’s something so grounding and peaceful about looking out at a vast body of water, hearing and seeing the waves lap at the shore. Watching the fog roll in off the lake, I literally felt all the “yuck” of the past two days being blown off of me as the wind danced through my hair. The surroundings were quiet…just the sound of the water and the gulls.
I sat there for about an hour, just processing feelings and embracing my emotions. I prayed for a little while and just opened myself up to hear from the Spirit. The sun was setting. I have a special relationship with sunsets…God speaks to me through their representation of an end to one day and the promise of new beginnings the next.

As I left, I felt almost tranquil. None of my circumstances had changed…but something in my soul had.

Super Woman I am not!

It was 7:51 am this morning, and I was putting the finishing touches on my makeup. My Blackberry started chirping, so I looked and saw an email from Jaidin’s babysitter Amber.

This is what it said:

This is really funny…if you have a family picture, can you let us have one? I have a wall down here where all the kids have their family pictures and I was bugging you for awhile…I know it’s hard with Jaidin going to 2 different schools and all the things you have to remember…anyways…Jaidin wanted her picture up there, so one day I took a picture of just her and she asked me if she could stand by the turtles so they could be her family. LOL. I was laughing so hard. Next time you’re downstairs, you’ll have to see on our Family Wall, I have a picture of Jaidin (really cute) standing on the stool proudly next to the turtles. LOL. If you think of it, send us a “real” family picture! (although the other kids are very jealous that Jaidin gets a picture with the turtles) Very funny girl.

Amber

She HAD been asking me to bring in a picture of our family ( um…for like the last 3 months ),but I just kept forgetting. How bad did I feel? My poor daughter having to pose with the turtles because her mommy can’t remember to take in a family picture. A few months ago, I would have really beat myself up for being a “bad mom”. In fact, I cried all the way to work one day about 6 months ago because I forgot it was Show and Tell day ( for like the 3rd week in a row) and Jaidin didn’t pack anything to show to her class. Talk about working mom condemnation!

But I’ve gotten over that. I’ve gotten over myself. I’m not Super Mom, and I’m not Super Woman. And if the worst disappointment my daughter experiences at age 4 is that I forget to take a family picture to the babysitter’s, then in actuality, I guess I’m doing pretty good. But I doubt she was even disappointed…I bet she thought her “turtle family” was pretty cool…and I think she’s pretty ingenious for thinking that one up!

So today, I was able to laugh this one off…with thoughts of a little girl with a crazy imagination, and a mom who is finally learning to give herself a break.

Not to mention…red spandex is a real fashion faux pas….