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Well Now, THAT Was Embarrassing!

Good evening folks!  I just got home from a fantastic vacation with two topic ideas!  I’ll post one now, and one within a few days.  I decided to go with this one first (for no reason in particular).  I hope you can laugh at my embarrassment and share your less than stellar issues as well. 

Every person in the world is embarrassed by something. (No really!  It’s true!)  Even people who have seemingly perfect lives have those “oh shit” moments from time to time.  I figured I share mine with you.  I do this with a great deal of risk, considering I’ve taken great pains to hide these things in the past (with less than perfect results).  So this is dedicated to you, my dear readers, to remind you that no matter how embarrassing, it’s important to remember that it isn’t as bad as you may think.

My Top Five Embarrassing Traits

  1. My Talking Tummy: Once they removed my colon, my small intestines built a new language. It’s purpose? To act as a beacon to call the big intestine home!  It yells, moans, and rumbles with great effort.  When their efforts seem to fail, it wails even louder.  I’m often surprised that seals don’t beach themselves and drag to my current location to see what all the fuss is about!

    This crazy organ screams when I’m hungry or full, when I have my typical tummy ache or not. There’s no quieting it’s cry.  I’ve tried everything, but that small intestine is just so lost without it’s counterpart.  I feel sorry for it, actually!  I can’t even imagine being a twin and losing your other half with no notice or reason.  I’m working on being a little more compassionate, I just wish she’d send a text message instead.  Does the entire world need to know her sadness?

  2. My Impersonation of a Tomato: Oh, how I envy my non-blushing friends!  Without my permission, my face swells and gets red in it’s effort to impersonate a tomato. Why? Who knows!  This little one-person-show happens when I’m hot, excited, embarrassed, hungry, full, tired, standing, sitting, etc. There are so many triggers, I can’t list them all. I try to laugh it off, but the harder I try to explain, the redder I get!

  3. Digestion Belly Dance: As you have likely read in my older posts, I had most of my abdomen removed in 2013 in an effort to correct the mistakes made during a botched hysterectomy.  What you may not know is I have no abdominal muscles left, and very little tissue between the intestines and skin.  The result?  I can literally WATCH as food digests.  If I’m wearing a thinner shirt or pants, this little dance can be watched from a few feet away!  If I were thinner, it’d look like an exotic belly dance.  On me, it really looks more like a run-away snake slithering in circles on my tummy.  Now THAT’s attractive!

  4. Am I a Chia Pet or Q-Tip? The REAL question is “does it mater??”.  Even after losing most of my hair, I still manage to look like one or the other by the end of the day.  No matter what product I put on my hair, it tends to grow and thicken throughout the day.  On the rare occasions that I’m out and about after 8pm, I cannot be held responsible for the damage this fro does to innocent bystanders.  It’s thick and course and generally contains some sort of industrial strength taming gel that makes the ends as sharp as razors.  Don’t get too close! You may lose a finger!

  5. Shuffle, Bend, Brace…Shuffle, Bend, Brace: I was reminded this weekend that my physical appearance makes me look about 20 years older than I am.  More than once, I was asked if my friend (who happens to be 2 years older than me) was my daughter.  Seriously? A little gray hair, and a stooped stance doesn’t actually age me!  I don’t feel like a senior citizen yet!  Please, let me get used to my forties yet!

So there you have it!  My top five. There are, of course, more, but I have to keep a little dignity, don’t I??

Let me hear your most embarrassing traits!  Don’t worry – I’m sure you aren’t alone!

 
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Posted by on March 3, 2014 in Medical Humor

 

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Superwoman

As I wrap up a visit from the flu and Iritis fairies, I realized I hadn’t written for a while.  One awesome follower of this blog contacted me to be sure I was okay.  I’m so grateful for that message!  After being cooped up in the house for almost a month, that small act of kindness really meant a lot to me.

I realized I needed to post again (both for readers and myself). Since I had no idea what topic to cover, I decided to read a few other blogs for a bit of writing inspiration.  Some blogs I found were funny, some just silly, and one seemed to hit a cord with me.

http://mentalfloss.com/article/54461/4-russian-travel-tips-visiting-america

Granted, it had nothing to do with AS, UC, or chronic illness, but I was drawn in by the humor and kernels of truth. While the majority of the post was a typical over-simplification of the differences between the Russian and American cultures, the final item – On American Optimism – was a surprisingly accurate! It was one person’s account account of what’s required to be a proper, socially acceptable American human.  Apparently we Americans have an unyielding optimism, no matter the circumstance.

“These people do not stop smiling. Also, they don’t want to hear your problems because it interrupts their smiling. ‘Surviving’ makes you a hero over there. Here it just means you were unlucky, but not unlucky enough to have died.”

Before reading this article, I had no idea how much this simple statement ruled most of my interactions with people!  This is the reason I say “I’m fine” when people ask how I’m doing.  This is why I hibernate when I can’t find the strength to pretend I feel good.  It’s also why I feel guilty when I feel sick. Hell, it’s the basis of this entire blog!

  • Success is finding the joy.
  • Success is smiling no matter what.
  • Success is distracting people with humor so they don’t see the pain.

A couple of years ago, I started to change that pattern with family and some close friends.  It felt awkward at first.  I felt broken when I opened up. It’s still a struggle for me, but I’m making an effort to be more genuine in my relationships.  I won’t lie – it does come at a risk. This mission of honesty has driven many people away.  I’ve learned that the people who leave fall into one of two categories:

  • They believe chronic illness and pain are contagious: If they sympathize, they are inviting misery into their lives.
  • They believe any “negative” feeling is a sign of weakness.  Admitting something is painful means I can’t handle pain.

Since I spent years pretending I wasn’t sick, I suppose I subscribed to the same thinking.  It takes an effort to be truthful all of the time.  That sounds weird, so let me repeat myself…

It takes effort to be truthful all of the time!

Admit it – sometimes it’s easier to spit out what people WANT to hear.  You know you’ve done it too.  It becomes a pattern.  It feels like a tennis match instead of a heart to heart connection.

How are you?

Fine, how are you?

I’m fine.

Whew! Conversation over with no emotional honesty to endure! YAY Me! I’ve accomplished what the Russian author – I’ve maintained the smile and “survived” all of the things I didn’t say.  As Alicia Keys sings:

Even when I’m a mess

I still put on a vest

With an S on my chest

Oh yes I’m a Superwoman

I am a Superwoman when I can be stoic and pretend everything is okay, right?  Well, not really.  As I get older, I realize I’m NOT being heroic, I’m being a martyr.  That’s not what I want for myself.  That being the case, what do people really think when I’m truthful?

Some people prefer honest and forthcoming communication. Others don’t want to connect on a deep level.  The trick is knowing your audience. Is this person part of your inner circle, or just a casual friend?  Is this someone who has a history of supporting you through your challenges, or someone who is conveniently absent when the chips are down?

My natural inclination is to joke and smile until my body can’t fake it anymore.  It’s made casual connections much easier to manage.  Does that make me less genuine? I don’t think so.  I think it’s honest in it’s own way.  I may tell this causal friend that I’m FINE when I hurt.  Truth is I AM fine – I just happen to also have pain.  I can justify it because honesty doesn’t necessarily mean full disclosure.  I save that for people who have shown through time that they will still see me as strong when my body is weak.

Another way to look at this is

Honesty weeds the weak people out of your life

Is that such a terrible thing?  I don’t know about you, but I really have no interest in fair weathered friendships.  Been there, done that, bought the t-shirt.

I’d love to hear your thoughts on this! Are you completely honest when people ask you if you’re okay?  Do you smile at all costs?  Was the article a good representation of Americans?

 
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Posted by on February 24, 2014 in Random Thoughts

 

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It’s a Bird, It’s a Plane, CRAP – It’s the Laptop!

In the summer of 2003, I had the first of a two part surgical procedure that would remove my colon create a j-pouch in it’s place. It took nearly two weeks to get home from that first step.  I wasn’t prepared for amount of time it would take to recover, and was glad mom was there to help me for a couple of weeks.  She got me up and moving, and helped the girls get to their various activities while I rested. Without her, I’m not sure how I would have gotten through the ordeal!

We lived in a 2-story townhouse.  Unfortunately I just wasn’t able to make it up the stairs to my room, so mom and the girls had changed the living room into my very own  temporary sleeping location.  The couches were moved to make room for a double bed.  As strange as it was to be on constant display, it was much easier to have everything located within reach. 

Mom left after the girls started school in August. I found myself quite bored.  When I got tired of my PT exercises, reading and crocheting, I spent time playing games and ordering groceries on my brand new laptop. It felt like a small step to rejoin the land of the living. 

One afternoon when the kids got home from school, we were all hanging out in my new bedroom, watching TV.  They were both happy to be inside and away from the 100+ degree temperatures outside.

  • ME: Amy, can you get me a glass of water? 
  • AMY: Sure

She went into the kitchen, grabbed a 32 ounce tumbler, and filled it to the brim with ice and water. Even before she made her way across the room, I could see the condensation accumulating on the outside of the cup. Just looking at it made me feel a little cooler. (do you know how this is going to end yet??)

  • AMY: Here you go!

Her eyes were fixed on the TV show when she tried to hand me the cup. I reached out, but couldn’t get my hand to the cup fast enough. She wasn’t paying attention, and let go of the cup about an inch past my reach. 32 ounces of water and ice went flying… right into my brand new, $2,200 laptop!  I heard a sizzling sound coming from the computer sitting on my lap.  I looked down and saw white smoke billowing.

  • ME: OH SH*T!

Without thinking, I threw the smoking laptop across the room.  It crashed into the fireplace before bouncing across the floor. (wait, it gets better!)

  • AMY: OH CRAP!

She she looked at me, eyes wide. Before I could say a word, she headed up the stairs at a dead run.  I heard a door slam.

  • ME: Amy! Come here!
  • AMY: (from upstairs) No!
  • ME: Come on, come down stairs
  • AMY: No way!
  • ME: Why are you upstairs?
  • AMY: Because you can’t get up here!

Despite myself, I started to laugh a bit.  Poor kid! She knew it was an expensive laptop.  She was afraid I’d be mad.  I WAS mad, but didn’t want her to feel like she had to hide out!  I’d get over it – she certainly meant more to me than a machine (no matter how expensive).

Sam came downstairs like a messenger pigeon to broker a deal for her exiled sister.

  • SAM: Mama, she feels awful!  She wants to know how mad you are.
  • ME: I’m frustrated because I can’t afford to get a new computer right now.
  • SAM: Yeah, but are you MAD?
  • ME: I know it was an accident.  OF COURSE I’m mad! Look – this is between sissy and I.  Please tell her to come here.
  • SAM: But how mad ARE you?
  • ME: No more games, Sam.  Please tell her to come down here so we can talk about it.

It took some convincing, but Amy finally came downstairs to talk.

  • AMY: I’m sorry.
  • ME: I know.
  • AMY: I didn’t do it on purpose.
  • ME: I know.  I am frustrated because you weren’t paying attention. 
  • AMY: Am I in trouble?
  • ME: Yes, you didn’t pay attention, and a very expensive computer was destroyed. I just need you to pay attention. You haven’t been paying attention lately, so you’ll be grounded to think about how you are going to be more cautious.
  • AMY: I WAS careful! It wasn’t my fault!
  • ME: No, you were watching TV.
  • AMY: I…
  • ME: At this point, it doesn’t matter.  You didn’t pay attention, and I’m out a couple thousand dollars.  I REALLY need for you to pay attention. (I started raising my voice) Without a computer, I can’t order groceries and I can’t work on stuff for the office. It’s going to cost a lot of money to replace it.  You need to understand that you have to be careful around computers!

The conversation continued like that for what felt like an hour (but it was more likely 15-20 minutes) I yelled. She cried.  It wasn’t the first time that something was destroyed because she was distracted.  I was so frustrated!  Why did the kids only break MY things by not paying attention??  It never seemed to happen with their things.

After I said my peace, Amy went up to her room. I looked at the laptop on the floor. It took so long to save the money for that thing, and now it sits waterlogged and likely battered from being tossed.  Part of me was angry that she wasn’t more cautious, and the other part of me was just happy that the sizzling smoke finally stopped. I also could have helped things by putting the computer down before reaching for the water. I hated punishing her, but she was getting old enough to know to watch what she was doing.

If I remember correctly, she was only grounded a week.  Since a new Harry Potter book had just come out, it wasn’t much of a punishment!  She read the thing twice before she was off the hook to play with her friends.

What I learned: People are always more important than possessions.

What Good Came Out of This: 1) Since I had to wait another month before buying a replacement computer, it took me a while to turn into the computer zombie again.  2) Amy NEVER had water around a computer again unless there was a lid on the cup!

 
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Posted by on February 5, 2014 in Life Challenges

 

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Be HEALED!

First I’d like to that a reader for suggesting this topic.  Please keep the suggestions coming!

If you’re like me, you need to vent every now and then.  Being sick comes with a myriad of emotions. Sometimes I’m grateful for the good days.  Sometimes I’m mourning the loss of function.  Other times, I’m frustrated about all of the crazy symptoms.  Holding all of that in can be toxic. Depression, anxiety, eating disorders, and other destructive behavior can be a result of not dealing with emotions.

If I’m honest though, I find that venting comes with a price.  Most of my friends and family are action-minded individuals.  When a problem is presented, they try to find solutions.  That’s a wonderful trait in most life situations, but it doesn’t mesh well with chronic illness.  If I say I’m sick of being sick, they come up with a stack of cure-all solutions.  Some of them actually do help symptoms (like the suggestions I get from a herbalist friend of mine), but most just provide false hope.

Here are a few that stand out because they were purportedly cures for all autoimmune diseases :

  • Add apple cider vinegar to all beverages
  • Soak my feet in a magical concoction twice a day
  • Take a hot bubble bath every time I had symptoms
  • Take a cold shower to “shock” the muscles and bones to work properly
  • Put WD40 on my back to loosen my joints
  • Cut out all (add just about any food or beverage here)
  • Eat only (add just about any food or beverage here) for a week
  • Drink a shot glass of olive oil each morning

Most of these I’ve heard more than once!  The common denominator in all of these suggestions is that they are supposed to be a miracle CURE for the disease.  Lets think about that for a moment.  A CURE.  In my case, that means a change in my DNA.  A reversal of unfortunate inherited genes.   A change in the way my cells act in my body.

To be fair, a couple of these have provided some relief, but none have been a cure. For example, when I can actually get IN and OUT of a bath, it does take a bit of pain away. If I followed the suggestion to a T, I’d never get out of the bath because the symptoms are a constant presence in my life.  While I’m happy to be in water, it would be a little embarrassing to interact with the rest of the world. I’d likely shock friends, family, and mail carriers who’d have to meet me in the bathroom to have a face to face conversation! 

I’m willing to try almost anything, especially when I have dueling diseases beating me up simultaneously.  If standing on my head while eating alcohol soaked Cheerios would make these conditions permanently leave my body, I’d rush out to hire a burly man or two to lift my legs in the air while happily getting inebriated one circular O at a time. 

If you knew me, you’d understand how out of character it would be – I don’t drink, and tend to pass out when my head is lower than my waist.

The people who care about us really do have our best interest at heart.  It has to be hard to watch as we deteriorate right in front of them. I think it can be just as frustrating for them as it is for us.  I get it.  Who wouldn’t want to jump in and fix someone a friend or loved one who is in pain?  Hell, it’d be nice if their efforts actually worked!

That said, I do get quite tired of hearing the thousands screwball suggestions for miracle cures. I’ve had friendships die when I don’t try what they suggest.  I see the disappointment when what they suggested didn’t work.  I understand the frustrations they feel when I don’t just “get past” what ails me. 

Here’s the bottom line – I want to be cured just as much as they want to deliver the cure!  I do listen to their suggestions, but need to weigh the risks and benefits.  I value my friends, and the ones that have remained know that part of being my friend is to accept me where I am on any given day. I will always check out the cures they find on the internet because one may actually work someday, but the ultimate decision about whether or not I will try it is MY responsibility.  I expect that decision to be respected.

So what miracle cures have you heard? Have any worked? Have you had a relationship suffer because of some suggested cure?

 

 
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Posted by on February 4, 2014 in Random Thoughts

 

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Gimping and Limping Across the Country (Part One)

When I first started this blog, it was with the intent of keeping things light.  You know – nothing but humor, nothing sad or difficult.  Then my wonderful daughter and my best friend both suggested that life is about a range of emotions. We deeply appreciate the humor in part because of how challenging the rest of our lives can be. 

This post is the first in a series. While it starts with a little doom and gloom, I promise it’ll get back to hopeful and happy by the end.  There was just no way to do the story justice without throwing in some good-old-fashion-reality. Here we go… 

Like it or not, the reality of the last year is weighing heavily on me lately.  I’m not bouncing back as quickly as I used to, and there are quite a few more medical problems that came from being in a coma and being on a vent for so long.  While I’m still very hopeful, I can’t help but wonder how these new found issue have shortened my life.  I don’t like thinking about such things, but it creeps into my mind from time to time.

Sam and I got to talking about it one day recently.  She has a lot of emotion around the topic, so I was happy she finally decided to talk.  Having mild autism makes it difficult for her to connect with emotions and talk about feelings as freely as some of us do.  That day she really stepped out of her comfort zone and opened up about how angry and frustrated she was about the whole situation.

After getting through all of the sad stuff, she asked me a life-altering, all-important question: If my time on this planet is shorter, why aren’t we doing more things on my bucket list?  Smart girl!  Why weren’t we? What the hell was I waiting for?  Sometimes it’s easy to say “we’ll do that later”, but what if there is no later?

I spent some time thinking about that and came to the conclusion that my reasons for waiting were quite flimsy.  Here are a few: 

  • I don’t deserve to do something fun because I can’t work.

  • I’m afraid of dying sooner because I pushed my body too hard.

  • Some things on my list are impossible, so why should I try ANY of them?

 I wrote this list down and stared at it for quite a while.  The more I looked at it, the more I realized I was just holding myself to an impossible standard.  If a friend told me they didn’t want to do anything because they were ashamed that illness kept them from working, I’d tell them they were crazy. Everyone deserves a little joy in their life.

I can’t do things because I might die?? I’m dying anyway!  Why not enjoy the ride and leave my family with memories outside of doctor’s offices and hospitals? I may die a little sooner, but it would be without regrets and missed opportunities. Instead of doing nothing, why not do things in a way that doesn’t push my body so hard?  By taking more breaks and ensuring that I had accessible medical support when needed, I can take some of the risk out of the equation.

Okay, so some of the list was no longer possible.  Wouldn’t it make sense to do the other stuff before my body kept me from doing those as well? I could say goodbye to my dreams of visiting each continent since I’m not allowed to fly for more than two hours a day.  I can let go of my desire to join the peace corps. That doesn’t mean ALL of my dreams need to die.  After whittling the list down to things that were actually attainable, the plan started forming in my head. 

Yes, we could do quite a bit on one long, fantastic trip!  Why not?  What was left looked like a zig-zag journey of the United States.  There are so many things I haven’t seen or done!  We decided to try to hit most of them on a six week road trip! 

Ah, how quickly a sad conversation can suddenly transform into a wistful dream!  Sure, we’ll have to make some practical accommodations to account for my health, but that shouldn’t be too difficult.  Every town has hospitals and infusion centers.  If we take well-traveled paths, and leave extra time for unexpected stops, I’d be just as healthy and safe as I would be sitting in my living room.

We’ve decided to take the van, and remove both of the back rows.  My step-father has offered to help build a platform so we can put a memory-foam mattress on top and our supplies on the bottom.  When it’s Sam’s turn to drive, I will be able to sleep on a bed that’s just like home.  We’ve got a huge wish list of stops that we’ll need to sift through.   It’d take us four months to do it all.

The only priorities we have so far are: 

  • Visiting Amy, my grandson, my sister, and brother in-law

  • Visiting my favorite cousin

  • Going to the Grand Canyon

  • Going to Mount Rushmore

  • and of course Going to Disney World!

Part of our journey will be along the southern half of Route 66.  Sam wants to stop at all of the kitschy old attractions (like the largest ball of twine).  I wanted to add a trip to our family cabin since I haven’t been since I was 13, but it’ll still be snowed in during our travel dates. 

I know how lucky I am to have a 20 year old daughter that actually wants to be trapped in a car with me for 6 weeks!  It’ll take us 2 years to save up for this adventure, but I think that’s part of the fun! We’ll plan and re-plan until we come up with the perfect, entertaining road trip.

As plans evolve, I’ll be sharing them here.  If anyone has suggestions for our cross country trip, let me know!  

 
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Posted by on January 13, 2014 in Having Fun

 

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The Difference Between Misery and Contentment

I’m not terribly fond of New Years Resolutions.  Why should we wait until December 31st to begin a life shift?  In my experience, this tradition has set me up for failure too many times!  Don’t get me wrong – I love the concept! I think it’s important to re-examine our lives from time to time so we can make the necessary changes to grow as human beings. 

One amazing gift I’ve received from chronic disease is a deep appreciation for the short time we will be on earth.  I never wait to tell someone I love them. I don’t like to leave issues unresolved.  I take every opportunity to create memories with my family and friends. Waiting until the last day of the year to focus on these priorities could be too late.

I know, that all sounds depressing, right?  Well to me, it really isn’t depressing at all!  I actually get a sense of pride and accomplishment when I say what needs to be said and resolve issues so they no longer drain my spirit. Imagine going to bed each night without a list of regrets.  How would it feel to know with absolute certainty that every friend and family member knows they are loved and appreciated by you? What if every single item on that bucket list was checked off, and you took advantage of every spontaneous joy that came your way? It sounds like heaven to me!

No, I have not achieved all of this yet – not even close!  All I can do is try every day to keep my mind moving in a positive direction.

I seem to be in a constant state of self-evaluation. Over time, I have uncovered some rather unhealthy patterns. Every morning, I try to re-commit to changing those habits.  Here are some of my self destructive habits, and what I do address each one:

  • Feeling like I am less valuable because of my illness:
    This is a constant battle for me. It’s easy for me to believe I’m not contributing because my body won’t let me hold a job. That feeling left me with the belief that I had nothing to offer without a paycheck.  After five years, I’m starting to see things differently.  My value is so much more than a job.  I give the gift of time.  When a friend/family member needs a compassionate ear, I’m here.  When I volunteer on the crisis line, I’m there for a complete stranger.  When one of my kids needs to work out an issue in their lives, I’m here to listen and provide guidance.  I’m starting to see that I matter in their lives.  I have a purpose to them regardless so of my employment status.
  • Spending too much time thinking about the illness:
    In my reality, bad medical news and the practical needs of a chronic illness can easily take over.  If nothing else, it’s time consuming! Doctor appointments, new medications, fevers, drug side effects, fatigue, and so many other issues can easily consume every thought. I’m making a conscious effort to counter every illness related thought with something life-affirming. When I think “I’m so tired of being sick.  I’m always sick!” I counter it with something like “I’m like a cat! I have 9 lives!  This isn’t going to kill me! I’ve muscled through tougher things without breaking a sweat.  I can do this!”
  • Beating myself up for beating myself up:
    When my mind drifts into the negative, I’m quick to judge myself.  Why can’t I just always think positively? Things would be great if I could JUST keep my mind from going into pain and despair.  I KNOW that positive thinking can shape the way I feel on so many levels.  Why then can’t I just DO IT?  Interestingly enough, when I have a ‘bad’ thought, I always end up having this argument with myself.  How dare I think bad thoughts?!

    The reality is bad thoughts will creep in.  There’s no stopping them.  My only choice is whether or not to continue feeding those thoughts.  Instead of berating myself for having negative emotions (and creating even more negativity), I now give myself a break.  I acknowledge the feelings, then present a counter-argument that addresses the other side – the positive side.  Ignoring the bad stuff doesn’t work.  Acknowledging that the bad does exist and consciously making the decision to see the more positive side is much more effective.

Here’s what it boils down to:  I am a wonderfully flawed human being.  Bad thoughts (and sometimes actions) will creep in whether I like it or not.  I take time on a regular basis to allow myself to deal with the miserable stuff and promptly release.  Not sure how to release the bad stuff?  Here are some of the things I do:

  1. Write down all of the bad stuff on a piece of paper, then burn the paper
  2. guided meditation to release
  3. talk it out with someone
  4. work it out through exercise (if you physically can)
  5. go to a support group
  6. Most important – learn to forgive yourself for being sick.

How do you deal with the unfortunate reality of illness?  How do you let go of negative thoughts and behaviors?

 
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Posted by on January 4, 2014 in Life Challenges, Random Thoughts

 

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Merry Christmas!

From our family to yours, we wish you a merry, pain free Christmas! 

 
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Posted by on December 24, 2013 in Uncategorized

 
 
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