Posts Tagged ‘Crohn’s Disease/IBD’

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Baby Steps

Feb 4, 2012

Baby Steps

Changing the theme of my page – and changing it to something more “peppy” and, dare-I-say, “positive” than the gritty looking theme I’d been using since I began this blog – was a very big step for me.  Writing again is an even bigger step.

A surprising side-effect of living a life that deals with chronic illness(es) has crept up behind me and caught me completely off-guard; while my former identity was slowly being siphoned from my new reality and the confusion of determining how a ‘sick’ version of myself looks and behaves has preoccupied most of my waking hours, I have been steadily losing… “my voice”.  Ideas may make it as far as a sentence in my head, but my inner critic – who used to be mostly just annoying – has developed super-human powers and has the ability to paralyze  and silence me.  And it does.  Regularly.

I have been writing for nearly 35 years.  Writing has been a compulsion, a joy, a job, a hobby, and a huge part of my identity for as long as I can remember.  Over the past year, though, the volume of the voice that says, “You have nothing of value or interest to say, just shut up,” has become the loudest and most prominent voice I hear.  And it is so convincing.

A surgery last February that was supposed to give me relief from my Crohn’s symptoms has actually exacerbated them, restricting my life and activities even more than before I went through that particularly hellish experience.  Each month of my recuperation, I was told I would soon feel better, but with the removal of my ileocecal valve (along with a portion of my large intestine), I spend more time IN the bathroom, RUNNING (faster) to the bathroom and praying that I MAKE IT to the bathroom in time. 

Putting so many of my eggs in that surgery basket set me up to plummet into a deeper depression than I’ve known in the past; too many days have been spent swallowing OTC sleeping pills and pulling up the covers after my family has left for work and school, then fantasizing about the relief that sweet sleep will soon bring me before finally surrendering to its numbing, comforting powers.  Funny thing about those OTC sleeping pills, though – they stop working after a while, preventing me from entering the sanctuary of sleep and introducing debilitating insomnia, instead.

Enter: Apathy.

Apathy is frightening.  I really want to feel something other than ‘sorry for myself’, but when I do, I feel nothing at all.  No disgust, no anger, no pain, no happiness, no love.  Apathy sucks.  Do what you can to avoid succumbing to it.

So I’ve been working at eradicating the apathy, primarily by forcing myself to list the things I truly am thankful for.  And, what do you know?  There are actually a good many things to put on that list.  This is not to say that I’m really any better at dealing with my chronic illnesses or the things they have stolen and continue to steal from my life, but even if my gratitude list has items such as: I’m thankful that I’m not also paralyzed, I’m thankful that I don’t live in a third world country, I’m thankful for my home (despite being behind in our mortgage payments), I have decided to give myself a tiny break and appreciate this baby step.

If I were going to wait until I had something I deemed worth saying, or wait until a time when I had the ability to write well enough to pass my own scrutiny, I would not be writing today.  And I wanted to write today, so I’m biting the bullet… then using it to shoot the perfectionist that lives inside of me.

Gotta start somewhere.  And I’m tired of berating myself every day for starting something else (a blog) and not sticking to it. 

I’m thankful that I managed to write 654 words, and I’m thankful I didn’t have to get up and run to the bathroom while doing it.

Baby steps.

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When you get mad, what calms you down?

Jun 18, 2011

©2004-2011 ~S-Pan

I have been so angry lately, a trait that has never really been an issue for me in the past, but is becoming more and more difficult to deal with.  Because depression is often defined as “anger turned inward”, I guess I’ve always just opted for the depression thing. I’m better at that.  But the more evident it becomes that I am powerless to change the things that anger me, the more I find my inward filling to capacity and unwanted emotions spilling outward.

So I snap at people. I avoid people. I try to avoid myself. Guilt soon crashes my anger party because I’m a Christian woman who is unable to find or keep the peace that I know God offers and I know is experienced by others. I should know how to do this; I should know how to cope. But I don’t. And then, I become even more angry… at myself.

Right now, my anger has made it necessary for me to hide in my bedroom away from everyone, including my brother-in-law who is visiting from Chicago. I get two days notice and then he’s here, at my messy house, for 3 days. We haven’t seen him for about a year, but worse than that, he hasn’t seen me for just as long. During this time, I have become sicker; my ability to keep the house clean has become increasingly hindered; I have lost 2 more teeth – a fact I hope to keep hidden by smiling very little and, if the occasion arises, to laugh politely while covering my mouth  (Think: Geisha Girl ).  Perhaps worst of all, I am so much fatter than the last time he saw me because I continue to gain weight for reasons my doctors cannot identify.  Since I never wear shorts and only wear t-shirts with sleeves that extend down to my elbow, I am always warmer and crankier than everyone else in this hot house that lacks central air.

The bedroom is safe. The bedroom is air-conditioned.  The bedroom is closer to the bathroom – always something I need to be concerned about.  No one can look at me while I’m here in the bedroom and I can’t see all the things that need to be cleaned… and then stress over it. It’s easier to lie to myself about my life and easier to believe some of those lies when I’m in here.

But hiding is not enough; still, I am mad.

Today is the anniversary of the day my husband and I first laid eyes on each other. It is a date we have remembered and celebrated every year, but one that he has apparently forgotten today. Perhaps it’s for the best that he not remember the healthy, much thinner, attractive woman (who still had the majority of her teeth); the woman who was wearing short flouncy skorts, a sports bra, a tan and a broad smile. It’s probably better he not allow himself to think about who I used to be and how much fun we used to have when I was able to participate in the activities we once enjoyed doing together.

He and his brother went on a long bike ride today – something I was once able to do, but now I just glance at my still nearly-new bike in the garage and pretend I believe myself when I think, “someday…”

And the anger intensifies.  No, no, no… it’s not fair!  I throw a little tantrum in my bedroom sanctuary. I cry tears of anger more than sadness and make a mental note of how much uglier I look when I cry. I honestly don’t know what to do to feel calm or break free from this runaway train of thought that always leads to anger. So I resort to my trusty Xanax. It takes the edge off and, at some point soon, I should be asleep. Barring any dreams that mimic reality, I will then be calm and free of any anger… and blissfully unaware that I let it get the best of me again.

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I-dentity Cry-sis

Apr 27, 2011
© gurudesignZ.com 2002

When I was about 14 years old, I had a crush on Shaun Cassidy – for about 2 weeks.  During those two weeks, my best friend and I spent an afternoon babysitting and scrutinizing every word in a celebrity rag sheet (Star Magazine, I think).  And who should be on the cover of this Pulitzer-prize-worthy publication?  Shaun Cassidy.  But wait, who was this woman on his arm – where *I* was supposed to be?  All I remember is that her name was “Debbi”, spelled just like that, without the ‘e’. 

The next day, I began spelling MY name “Debbi” – without the ‘e’.  In my insecure, peer-dependent opinion of myself, I now had something that made me…. interesting.         O, happy day.
 
After about 2 years of writing “Debbi” on my test papers, term papers, and all things school-related, I graduated from high school and began working on Wall Street as a receptionist.  It was just a temporary gig until I started college; I was only 16, I had time.  But a combination of events kept me at my Wall Street job earning money instead of a degree. 
 
And I was so good with money, I still am.  I loved to watch the numbers in my savings account increase each week as I admired myself for such monetary maturity.   When I left home and moved into my own apartment, I needed more than just a savings account, I needed checks to pay bills.  And I needed those checks to tell the world that I spelled my name D-E-B-B-I —  Because at 18 years old, this was still extremely important to me. 
 
I remember gleefully opening my first box of checks and peeling away all the paraphernalia packed with all those booklets, anxious to see my name written across the tops of about 1000 blank checks.  But my excitement quickly turned to disappointment when I saw that the bank had spelled my name WRONG.  One thousand blank checks and my name was spelled “DEBI” on every one of them.
 

My dilemma was excruciating, as dilemmas only can be for a teenager: Do I return to the bank and have them correct the mistake, which would take another several weeks?  Or do I just drop one of the “b”s from my name, too? 

For the last 30 years, I have spelled my name “DEBI”, and that is exactly what is written across the tops of my checks today.  I no longer need an ‘interesting’ or differently spelled name, but it is quite easy to scribble on the bottoms of all the many checks that pay all the many bills now. 

But no matter how it is spelled, the important thing has always been – and is – that it’s not “DEBRA”.  It is not the name my parents insisted I use while growing up and, to my horror, even corrected my friends when they overheard them call me Debi.  (or Debbi, or Debbie :-/)  “Her name is Debra.”
 
 
If only the teenage angst over how to spell my name was the identity crisis I now experience.  As a person with more than one chronic illness, I don’t know who I will be from one day to the next.  Will I be bed-ridden?  Will I feel well enough to do laundry or grocery shopping?  Will I be so depressed that I hide in my bedroom until I have to come out and behave ‘normally’ for my husband and children?  Will I awake to discover that my pain is manageable and I barely feel sick at all, then become engrossed in one of my many untended projects… only to be punished with multiplied pain the next day?
 
I am not the vital, healthy, attractive woman I once was.  I can’t even hold down a job.  There is no savings account to watch with glee or pride and there are fewer and fewer activities available for me to enjoy. 
 
I’ve always thought the name “Debi” brought to mind the vision of a youthful, fun-loving, adventurous girl.  And I always thought it was a good fit for me.  But not anymore.  Now I feel like a fraud, like I should change my name to fit who I have become… something more like Ethel or Gertrude (no offense meant to those bearing these names).
 
Whenever I’m at the grocery store and a young check-out girl looks down at my check and then up at me, I feel certain that she’s thinking: “Debi”?  Really??
 
No, not really.  The bank just made a mistake.
 
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I Found my Mojo…

Mar 29, 2011

Sadly, it resides in the section of intestine my surgeon just removed.

The scar depicted above looks a lot like mine, except that mine is not healing properly and it goes through my belly button (though my surgeon promised it would not).  Oh, and the scar above is on a a nice flat belly that belongs to a body builder and my scar… well, let’s just say it does not :-/

It’s been 4+ weeks of pain, of infections, of an unexpected heart problem that had me in the ICU, of one doctor visit after another with more and more tests and more medications added to my already long list: MedsMy body rebels if I try to do anything even minimally strenuous and I’m always tired.  Tired from doing nothing.

But the most frightening part of it all is that I feel smothered in apathy.  I can’t think of anything I want to do; there is nothing that interests me, nothing that jolts the sensor that resides somewhere inside of me and makes me excited about beginning a project or a new task.  I just feel nothing.

Sometimes, I feel sad or guilty, but I just can’t revive the old me… or find her.  I have been trying to write this blog post for over a week, but have about a half-dozen deleted drafts to show for my efforts.  My heart is just not in it.  I have always loved to write: I’ve been journaling for years – long before there was something called “blogging”.  But here I am writing, yet it brings me no joy.  It is too arduous to include the details I originally thought I should mention.  And my journal just continues to gather dust.

Yesterday was my birthday.  We have a tradition of going to a local pizzeria to celebrate, but I was still feeling too poorly to leave the house and I couldn’t really eat anything at the pizzeria, anyway, so I broke our family’s tradition.   I could see that my daughter was disappointed, as my birthday is a much more exciting event to her than it is to me.

I read something about post-surgical depression, but this feels more like post-surgical apathy.  At least for the sake of my family, I hope it passes soon.  I hope mojo is the sort of thing that regenerates when removed – like a starfish’s arm or a salamander’s tail.

I wonder if they endure an empty feeling while they wait for their appendages to grow back.

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This is where I would usually quit

Jan 18, 2011

Courtesy: wusa9.com

Sixteen days have passed!  It was the VERY FIRST week of the challenge and I blew it, already!  Oh, but I have reasons (good ones, even) – or excuses – I suppose it depends upon who you ask.  Either way, the result is still failure.  Yep, I failed [again].  But, hey, I’m back to try harder.  That’s how I’m choosing to handle it… this time.

And as I revisit my email box after taking care of my sick daughter, and then my sick husband, and THEN getting so sick myself that my surgery had to be cancelled/postponed, in one sitting I am able to peruse a list of ‘Daily Post’ topic suggestions that have piled up while I was away… suggestions for bloggers who have taken up the blog-a-day/blog-a-week challenge and kept it, no doubt.  

How about 1/5: Are You Stressed Out?  Well, just a little.  On 1/5, I was 5 days away from having a chunk of my intestines removed, but because I was sick with… A STOMACH VIRUS… my surgery had to be cancelled and still looms sometime in the near (but as yet unspecified) future.  And, while others suffered the horribly nasty symptoms of this rampant, disgusting virus (vomiting, diarrhea, headache, fever, loss of appetite, etc.) – which are certainly bad enough – I had the added bonus of being in the middle of a “bowel surgery prep”… about 24 agonizing ounces into it… before the surgeon called it off. 

For those who don’t know, this ‘prep’ is to vacate the intestines of any and everything that might be inside them before going into surgery (or having a colonoscopy, etc.).   In my bleary, feverish mind, and during one of my numerous trips to my least favorite room and seat in the house, I half-joked to myself that only taking a dose of syrup of ipecac could make my situation worse.  Am I in some sort of sadistic cartoon?  I wondered.  Nope, it really happened.

This morning (actually, 1-11-11), the following suggestion was posed: Tell something you haven’t told anyone else.  How about that I was truly afraid I was going to die this time when I went into the hospital, which is especially odd because about 6 weeks ago, I was so depressed I couldn’t find a good reason for my being alive in the first place.  Always sick, always limited, always feeling like a burden – it can get to a person, you know?  But suddenly I’m afraid of dying in surgery?  I found myself a little confused, pleasantly surprised, but still very afraid.  I didn’t let anyone know, though.  Brave face, always a brave face.

This afternoon, a bonus query arrived, the subject: If I only had an hour to live.  (Well, the surgery takes 3 hours, but I get the point.)  I’d probably berate myself for 31 minutes and defend myself for the remaining 29… ‘cos I’m a fun kinda gal who does that sort of thing :-/  But really, I’d want to be with my family – and by family, I mean: my husband and my children and my best friend(s), the people I know that I know that I know love me.

On the 9th, I was admonished not to quit, so I haven’t – even if I missed my very first blog-a-week deadline (good grief!!).  I also remembered back to the advice given about Overcoming our fears as bloggers on the 7th.  Have we met, Scott?  I get so caught up in the details, I often opt for the “trash” button over the “publish” button.  Imagine my relief when I learned that there’s no Blog Jury who sit in judgement of everything I write and then email every grammatical and spelling mistake I’ve made to everyone I know along with a harsh critique of my style and substance (“…and she has an irritating tendency to ramble!”)

As for A Recent Aha Moment:
I began that sentence a week ago when I was desperately trying to post something for the challenge only a week late, and now I’m 2 weeks late!  I’m off to a fantastic start and am beaming with pride – not!   But here’s the thing: I realize that I’ve gotten to a point in my life where I will not be mistaken for a svelte, speeding French high-speed train, but something much closer to a version of the Little Engine That Could (maybe, sometimes).  The “aha” part isn’t in acknowleding that, it’s in giving myself permission to be ok with it.

courtesy: ibnlive.in.com

It’s not the end of the world, Debi :-)

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Not a “Resolution”

Jan 2, 2011

courtesy: Getty Images

If I call it a resolution, I’ll never get it done – and I want to achieve the goal of writing a post at least once a week.  WordPress challenged me (yes, “me”, personally) to blog either every day or every week and I have decided to accept the weekly challenge. 

So often, I think about what I want to post in my blog today, but then ‘today’ turns into last month.  And, despite the fact that this is a recurring phenomenon, I am shocked every single time it happens. 

A little discipline… a little accountability… and a decent amount of down time as I convalesce after surgery on January 10th should help get me started.  A portion of my intestines will be sacrificed to the Crohn’s Monster that day because I have exhausted all of the medicinal remedies and they are no longer effective.

Giving up a piece of my intestine is a small price to pay if the quality of my life improves as a result.  So this is happy news… and 2011 will be a happy year.

Happiness and good health to all in 2011,
Blessings,

Debi

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Practicing for Thanksgiving

Nov 14, 2010

The sicker I feel, the easier it is to [metaphorically] throw my fists in the air and scream “why me??” (which most often metaphorically happens in the shower, where no one can see me or hear me cry.)  During yesterday’s pity-party/shower-for-one, I tried my damnest to find things to be thankful for. In my overcrowded mind, full of valid complaints and fears, a voice full of anguish and anger screamed at me through gritted teeth that there are, in fact, things to be thankful for. And if I don’t start to focus on some of them very soon, regardless of how minute some of them might be, I am going to lose it.

So, here is what I’m thankful for today:
I am oh-so-VERY-thankful that I do not live in Thailand and that we do not have squat toilets here in the U.S. And I mean that!

courtesy: hobotraveler.com

Uh, uh. Nooooo, noooo, noooo… SO not happening.

Even without Crohn’s Disease, using a squat toilet is something I DO NOT want to think about, but with the amount of time I spend on the freakin’ thing, I want something I can actually sit on. And I want something that flushes! And, just to make things more interesting, with my Fibromyalgia, I would topple over within a minute or – maybe – two :-/

So, in review: Thankful I don’t live in Thailand; thankful for toilets I can sit on here in the U.S.  It’s a start.

Other people always start with “I’m thankful for my health”, right? …and nobody gives them sh*t.



See? Thankful AND happy