Archive for the ‘Meds’ Category

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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.

Rest Ministries chronic illness support featured site

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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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What would *I* do with a million dollars?

Feb 18, 2011

one MILLION dollars

Remember when $100.00 was a lot of money? 
$1,000.00? 
A million dollars is still a good deal of money, though – certainly enough to alleviate a significant amount of stress or financial hardship.

Honestly, I don’t need a whole heck of a lot.  I just wouldn’t know what to do with it all.

After giving the first 10% to my church, I would pay off my house, THEN go about the business of making all the repairs that this comfy old house needs so badly.

I’d pay for my son’s college so we could eliminate the need for his pending student loans, and I’d encourage my two older sons to attend college [now that I could afford it

I’d breathe a little easier.

I’d go and get a professional haircut instead of mutilating my own hair every few months.

I’d put money away for when my husband retires, and I’d tell him to immediately quit his second job!

With a million dollars, I would pay off all my medical bills and open up some sort of savings account so I could afford all future bills not covered by insurance, plus all the expensive co-pays on my medications.  Perhaps I’d even delve into holistic medicine or some alternative type of healthcare where all the doctors work together and treat the patient like a person instead of like an annoying conglomeration of symptoms.

Peace of mind.  No, you can’t buy it, but you can afford to ward off so many of it’s thieves.

If I had a million dollars, I would wrap a really big box for my husband and fill it with lots and lots of cotton.  When he finally emptied all of the cloud-like cotton out of the box, there would be a toy airplane tied to a certificate at the bottom that enabled him to take his favorite Cessna out for a flight each weekend.  He has a pilot’s license and absolutely loves to fly, but it’s just too expensive to rent a plane for even an hour or two.  Flying has become a memory of something he used to do when he was single.

There’s no way I could get away without buying my daughter a toy or two (or ten :-/ ), just as long as it’s a one-time deal – no spoiled kids in this house!  But, oh… not having to worry about her college fund – how wonderful would that be?

I have always imagined starting a charity for young widows with children.  I would want to try to start that.  People express their condolences when they meet a young widow taking care of young children; sometimes they’ll bring over a meal or leave an open-ended offer of “call me if you need anything” before they disappear, but few people realize how – or if – she’s able to take care of everything.  Is she by herself?  Does she have a family that helps her?  Did her husband have adequate life insurance to help with the children?  Who babysits when one of the kids is sick on a school day and she can’t take off from work?  As a former young widow with 3 boys, I know there are many things that people assumed about our situation that just weren’t so.

At least now I can laugh (though still with disbelief) about my boss at that time telling me, in all seriousness, that I didn’t need a raise, I needed a husband.  No, my children needed to eat… I’m pretty sure I needed a raise :-/

A million dollars IS a lot of money and the responsibility of spending it in a good and proper way is daunting to me.  The words, “To whom much is given, much is required” (Luke 12:48) take on a deeper and more personal meaning in the shadow of ONE MILLION DOLLARS.  Perhaps I’m better off just dealing with the daunting tasks at hand.

For now, anyway ;-)

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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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I’m Not Invisible

Sep 15, 2010

courtesy: Photobucket/kiashee

But most of the time
I feel like I am,
Or feel like people wish I was,
Or *I* just wish I was…

invisible 


Well, this is no way to celebrate Invisible Illness Week, now is it? :-/  Sadly, this week that acknowledges those of us with Invisible/Chronic Illnesses, who most people don’t understand and find it easier just to make assumptions about and/or mock, did not fall during a particularly “Daisies-and-Butterflies / My-life-has-purpose-despite-my-illnesses / Everything-is-going-to-be-dandy / I’m-beautiful-on-the-inside (and other lies fat people tell themselves) 7-day span.  Sorry, everyone.

And that’s the key word, isn’t it?  For me, anyway: “Sorry…”  Sorry I’m sick; Sorry I cost so much money; Sorry I can’t work; Sorry I can’t go do that thing with you guys; Sorry I’m depressed today; Sorry you have to work a second job [because of me]; sorry I’m not thin and beautiful anymore.  I’m one sorry piece of work.  But you know what? 

I’m the sick one

I’m the one who takes 18 pills a day and is dealing with dueling side-effects (sans the banjo :-/ ).  I’m the one who gained weight, despite having Crohn’s with the diarrhea and the nausea, yet I still have to look at me.  And I’m the one who wakes up feeling like I’m encased in cement and I have to break free each new day and then hobble to, where else?  THE BATHROOM to see what new adventure awaits me.  I never know how bad or how good a day is going to be, but I know my good is never going to be what it used to be – and never as good as yours – so what the hell is YOUR excuse?

I’m sorry… did I say all of that out loud?

I received my first comment yesterday; short and sweet and appreciated.  The last 3 words keep repeating in my head: “Keep telling truth.”  I was reminded that this was my intent from the beginning, to be completely honest.  This is why I won’t show my picture or use my real name or tell anyone I know my blog address; the idea being that anonymity promotes candor.  Yet, it has been more difficult than I anticipated, probably because I have been ‘trained’ to be more considerate of everyone else’s feelings (and have done a really good job at it – though often times, have been a complete phony).

Do people want the real “us” or do the prefer the phony version?  Sadly, the latter has been my experience all too often.  With chronic illness, the ability to ‘fake people out’ is all but removed and we are left exposed… “warts and all” as they say.  The rejection flies like never before if our audience wants the old us and we can no longer deliver.

There are a few more days left of Invisible Illness Week.  I may wear a lampshade and sing “Louie, Louie” yet.  Or I may just hide under the lampshade and turn the music up loud because that’s what makes everyone else happy.  I don’t actually have to sing, as long as they think I am… that should suffice.

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Two Hours Sucking Remicade through my Arm

Aug 9, 2010

 

 

It is à propos to me that my first ‘home page’ post should be written while I sit in the Mobile Outpatient Unit (The “MOPU”) of my local hospital receiving Remicade after the 8-week reprieve built into my treatment schedule.  While I am grateful that such a brand of poison exists to ward off the worst of the symptoms of my Crohn’s Disease and continues to buy me more time before I must surrender a portion of my intestine to surgery, I still prefer the seven weeks and 6 days of NO Remicade.  I’m just funny that way.

Apparently as I’ve aged, my veins have become skinny (that’s ‘my veins’… not to be confused with ‘my thighs’ :-/) and they are difficult to locate under my skin – even though it’s porcelain, translucent and has no tan because I rarely leave the house :-/.  This makes any I.V. stick an adventure and, while I have matured with my ability to handle the whole needle-phobia thing, having “bad veins” can push me to my limit. 

Today’s experience began with the traditional warm-towel-arm(s)-soak, which was made even more pleasant because I’d just come in from 95 degree weather and disgustingly high humidity; Hey, can you make those towels as warm as possible?  It’s almost like having one’s hands tied down as soon as you arrive, because there is nothing you can do once your arms are wrapped in wet, hot towels and some special water-resistant hospital paper from the elbows down and around your fingertips.  The aide had to take my watch off because suddenly, I had no fingers available for any usage at all.

And then the sweating begins.  It feels like there is steam rising up from my arms and causing my forehead, face, neck, etc. to start sweating AND cause my shoulder length hair to start sticking to my forehead, face, neck, etc.  But I can’t push it away because, basically… I have no hands and cannot move my arms.  I am not happy at this point.  I am, instead, an uncomfortably warm, anxious patient covered in sweat from the shoulders up with hair stuck to my face and neck, and covered in giant white warm, wet towels from the elbows down, waiting for a drug I don’t want… but do need.

<insert your own expletive>

Finally, the nurse comes around and takes over for the aide.  It’s 3:45 and I’ve been in the special ‘infusion’ chair since 3:20 for my 3:30 appointment – with my arms and hands wrapped in hot towels.  She asks where she should stick me.  We go through this every 8 weeks: You should stick me wherever you see the best vein.  “Would that be the right arm or the left arm?”  It varies, you should just look at my arms and see where you think the best vein is [YOU being the nurse and all].   This witty banter continues for a minute or two and she evaluates several veins (ALOUD), then looks to me for confirmation.  In a measured tone that I’m hoping doesn’t sound sarcastic or condescending, I say, Well, do you think that’s the best one?  When finally I get an affirmative response that sounds the least hesitant and doubtful, we have a winner.

Remember, I tell her, I get premedicated.  “You do?” she says, “let me check your chart.”  “Is this the first time, or do you get premedicated every time?”  she asks as she reaches for the chart.  Every time, I tell her calmly.  “Oh, you’re right… here it is right in your chart.”

Reeeeeeally? :-/

I’m sorry, but I just don’t have the patience I used to.  Well, she thinks I do, and I guess that’s the important part.  I have a sister who would have cursed her out an hour ago and been banned from the MOPU (possibly the hospital)… but that’s another story :-)  I’m the polite one, the one with manners.  Of the two of us, I’m the one people do not refer to as a crazy MF, and am darn proud of that distinction!

My blood pressure cuff has just inflated for the fourth time and my Remicade has almost finished infusing, as they say.  I am happy my BP has been normal the entire time I’ve been here, despite my restrained frustrations earlier.  And why not?  They give me a yummy turkey sandwich to assuage any of the unpleasantries of a life where visiting a MOPU every 8 weeks is mandatory. 

I even get these really bland graham crackers for dessert. ;-)