Apr 25 2013
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A RAK a day keeps bad karma away!!

So, today I had to go for my mammogram…standard operating procedure for a 40 year old woman.  So as I was driving to the dr.’s office thinking about how my boobs were about to be smashed by some mid-evil torture device that had to have been invented by a man…I had an idea.  I was going to RAK the shit out of today.  RAK stands for “Random Act of Kindness”.   I am a regular “RAK’er” and I get great pleasure from the unexpected smile from a stranger after I just bought them a cup of coffee, or loaded groceries into an elderly shoppers car, or picking up the lunch tab for a uniformed serviceman/woman.

But today I had a different idea.  I was thinking about an article I had just read about how an overweight woman had set up her camera and took photos of strangers mocking her behind her back in public.  Upon first reading, I loved it.  Loved her strength.  Loved how she took the power away from the mean-spirited and turned it back on them by using their pictures in her blog…showing that inner ugly is FAR uglier than a few extra pounds…but after reading it again, and seeing some friend’s comments on FB about it…I stopped to rethink…”WHY does it matter?”  “Why do people care what someone else looks like?  Is it because they feel poorly about themselves and the only way to feel better is to make someone feel worse than you?”   And that…is how my mind worked this morning on my whopping 5 minute drive.

So after my boobs were turned to pancakes, I knew I was heading to the mall for a “Brave Prize” for myself.  (After my kids had big doctors appointments..which, there were LOTS and LOTS in their early years…another story for another day…, we would stop for a “Brave Prize.”  )So naturally, I figured what I went through today deserved a brave prize.  So off to Macy’s!!

But on the way there, I stopped.  I bought some post-it notes and a sharpie pen.  Then, I RAK’d my way through Macy’s leaving post-it notes that said, “YOU (yes!  YOU!) are BEAUTIFUL!”  on every single women’s dressing room mirror.  It was so fun, and I felt so sneaky! (and I maybe bought myself several awesome brave prizes in the process…) I didn’t want to be spotted…I just hope that it made at least one person smile.  And I will never leave home without post-its and sharpie again.  And it is now my mission to do at least one RAK a day.  And my new motto??  “A RAK a day keeps bad karma away!”  Now go out and RAK someone!

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Apr 24 2013
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Think Happy…Be Happy.

People come into our lives for different reasons.  Some are there just a short time and yet leave a huge impression on our hearts.  Others are there a lifetime, yet the mark they leave on us is smaller. Some float in and out of our lives like a life preserver coming when we need them most. Some are in our lives when things are great and fun and exciting, but then run for the hills screaming when there is a hint of trouble.  There are the people that start as a friendly face at the coffee shop or PTO and then turn into a confidante you couldn’t imagine life without.  

I certainly know people that fit in each of those categories, and my guess is that you do too. Sometimes I have to remind myself that not all friends are created equal, nor should they be. I believe every person in my life is there for a reason.  Serves some sort of purpose.  Whereas one friend may be the person I turn to when I need a shoulder to cry on, another may be the first person I want to reach out to when I need a good laugh or distraction.   One friend is the one I call when I need advice on parenting, another gives advice on fashion.  One friend I could talk to once every 6 months, but feel as close to her as a sister, and another I could talk to every single day but not feel as strong of a connection.  

And there are people that leave an impression on us and they don’t even know it.  There is a woman that I photographed with her family in October who was battling an aggressive breast cancer that had metastasized again.   ( I am a photographer and I offer free family sessions to those battling cancer or other chronic illnesses.)  I found out yesterday that she is now at home with hospice and that her fight will most likely be over very soon.   I wish I had been able to tell her what an amazing person I found her to be.  Such a beautiful woman with a loving husband and a 6 year old daughter who couldn’t possibly understand what it meant to her mom that day to be walking through the woods in the beautiful fall leaves, not knowing if she would see fall leaves again…The woman smiled all day…even when the camera was not pointed in her direction.  She was happy to have that day.   She affected me in ways I cannot explain, and I won’t even try.  But today, knowing how close she is to losing her fight, it made me want to fight for her.  So I scheduled my mammogram, I put on some music, and I changed my attitude from “Ugh!  I hate that I have to do laundry AGAIN, and do the dishes AGAIN, and why can’t someone else ever take the garbage out?!?”  To  “Wow.  I love that I am here to wash my children’s clothes and marvel in how they are growing, and smile at the dirty knees knowing that means they were outside having fun.  I love that I get to be here to clean the dishes off after a lively meal where there was conversation and goofy jokes..and maybe even some potty talk thrown in.” (notice I didn’t mention the garbage?  Still haven’t found the good in taking the garbage out…but I am working on it.)   

For me, at least for today, it is all about perspective.  I can begrudge the little chores and mundane activities of daily life, or I can look at each little chore as a gift.  As a reminder that I am still here.  I am still alive.  And I am so very grateful that I made it through to the other side.  The sign I recently bought and hung up says it all:   Think Happy… Be Happy.   Sometimes it really can be that simple.  

 

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Apr 18 2013
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Coffee, puzzles and conversation.

It was a Sunday.  My husband, the kids, and my father in law had left to go swimming and my mother in law and I sat at their dining room table drinking coffee and doing a jigsaw puzzle together.  It was our “Thing”.  My MIL had emphysema and was on oxygen 24/7 and didn’t leave the house much.   So when we went to visit, her and I would do puzzles together and chat.  About the kids, politics, her love of antiques, the weather, you name it.

But this Sunday was different.  I can’t remember what started the conversation.  I am just glad we had it.  We were doing a puzzle of Times Square.  It was lively and fun and showed people happy and excited.  I couldn’t help but notice the contrast, and it made me sad.  And somehow, we started talking.  REALLY talking.  And my story came out.  She knew parts of it, the bits and pieces that I shared with the world.  She knew, obviously, about my surgeries, and how sick I had gotten, etc.  But she had no idea about my depression, suicidal thoughts, and how DONE I had been.  So I told her everything.  Every syllable of pain I had lived in for 5 years came spewing out in between tears and sips of coffee.  When I was done, she looked at me, her eyes misty, and said, “I get it.”

Three words spoke VOLUMES to my heart and to my soul.  I KNEW she got it.  She was DONE.  She was tired of being attached to her “leash” (oxygen tube), she was tired of fighting for each breath, she was tired of being sick all the time.  And *I* got it.  

That conversation was a turning point for us.  From that moment forward, I felt an intense bond to her that I cannot explain.  The saying “misery loves company” is true in a sense.  It isn’t  that I loved that she was miserable, I just loved that she understood what most had not. And I know she felt the same.  Unless you have dealt with horrific chronic pain/illness, you just cannot understand.  And we knew that we both “got it”.   She looked at me that day and said,  “Living and being alive are two different things.”  And she was so right.  For so many years I had been alive, but I had not been living.  But I had a second chance that she would not be getting.  She knew there was no getting better for her.

So then it was her turn to open up to me.  She told me her wishes.  Told me all about her living will and how she just couldn’t deal with one more thing.  She lacked quality of life and she was exhausted.  It may have been the saddest, and most memorable conversation of my life.  

I may not still have my mother in law, as she died a few short weeks later, but I have that puzzle.  And I have the memory of that day so etched into my heart that I will never forget it. 

 

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Apr 13 2013
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Writer’s block…or is it?

I have been struggling lately with posting.  Some days I feel the words flowing through my fingers on their own.  I don’t even have to think about it.  And other days I feel like I think about what to write all day and cannot come up with anything.  My goal was to write on this blog daily.  Tell a part of my story each day and it was finally all out.  But I am learning through this process, that maybe some parts of my story need to stay with me a bit longer.  There are parts that I am maybe not done with…so those I need to keep private a bit longer.

I do know that this exercise in anonymous “confessions” has helped a great deal.  I have just a few readers, and that is plenty for me now.  Knowing that someone is reading my story (the bits I have put out there so far) is helping me…If I can help even ONE person feel less alone in their depression, I am happy. 

I read a blog a few minutes ago that made me sad.  And worried.  And feeling a bit helpless.  I read of a young teens desire to give up.  And it brought me back to where I was at that age and how I felt the same.  I was done with life.  It hadn’t brought me anything but pain and insecurity and misery.  But now, I look back and am so grateful that I made it through that time.  I am 40 now.  And happy.  VERY happy.  And that is something that I NEVER thought was going to be possible.  Ever.  It wasn’t an easy road to happiness…it wasn’t a smooth ride.  But I did it.  I got here.  And it is a huge accomplishment.   

So, to you out there, if you are reading this (you know who you are)  I hope you know that I am here rooting for you.  I am praying for strength and happiness for you.  I am giving you a big virtual hug and wishing you the best.  Please don’t give up, please know you are not alone and if someone in the cyber world, who has never met you before, cares this much about what happens to you, you have to know that there are people in your every day life that care even more.  Reach out to them.  Talk to someone.  And if you can’t, you can talk to me. I wish you well.  I wish you strength.  I wish you happiness.   And most of all, I wish you life.  

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Apr 10 2013
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“I hope you have a daughter/son just like you!”

“I hope someday you have a daughter (or son) just like you!”   I am sure we have all heard it. Many of us may have even said it from time to time.  But how many of us  ever heard it with the undertones of love and pride, when we were doing something marvelous?!?!  I know I never did.  It was always with negative undertones and said when I was doing something wrong/naughty/etc.

It struck me one day, as I was saying it with disdain to my son who was (yes this is true) trying to skate board while wearing roller blades.  I was panic stricken as I stood with my back to him and just heard a THUD and a skate board fly past me down the driveway.  Luckily, the 11 year old boy-wonder was laughing and not injured.  But I was NOT laughing.  All I could think of was how lucky he was that he didn’t crack his skull open on the garage floor, break a limb, and otherwise ruin his (and our!) summer.  This child has NO fear and is always testing me.  So I said it.  With a touch of anger, a pinch of fear, and a smidge of disappointment in his lack of thinking this dangerous act through.   I looked him in the eye and with more disgust than I had intended, I said, “I hope someday you have a son JUST LIKE YOU!”   And you know what he said??? 

“ME TOO!  Because I am AWESOME!!!”

It is then that it hit me.  I will never forget that moment.  Talk about a “lightbulb moment”.  He was 100% right!!  He IS awesome.  He is fearless!  And creative!  And imaginative!  And, as stupid as it seemed to me for him to attempt such a feat, he thought it was brilliant and brave and, in his words, “amazing!”   So I took the disgust and disdain out of my voice, and said it again.  WIth love, and admiration, and awe….  “I hope someday you have a son just like you!”  And I gave him a hug.  (along with a long lecture on exactly WHY he should never attempt that again…at least without a suit of armor and strong helmet. And, preferably, while standing on a very padded surface NOT wearing roller blades and without a skateboard.)

Why is it that this saying is so often said with negativity?  Why would we tell our children that we hope they have kids like them like it is a BAD thing??  Isn’t that then just telling our children that THEY are bad?  Sending a message that they are not awesome??  But something to fear, and NOT want?  Think about it.

I heard this phrase a LOT growing up.  When my room was messy.  When I didn’t get homework in on time.  When I was late for curfew.  When I didn’t clear the table quick enough.  When I talked back to my parents.  When my sister and I were screaming at each other.  Always when I was in trouble.  Like I was such a horrible child that I was a curse to them, and so they wanted to put the curse back on me.  That they hoped I would have to suffer with a child as horrible as I was.  

And now, all these years later, I caught myself sending that SAME message.  I know some people say it out of fun, sarcastically, as a joke.  But do the children understand the joke?  Do they get that you are just kidding?  My guess is not completely.

So I have changed my attitudes.  Changed my tone.  From that point forward, I will only say that to my children out of love and pure adoration.  I DO hope they have children just like them.  Because they are AWESOME.  

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Apr 06 2013
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19 years ago…

19 years ago I was 21.  I was in college having the time of my life.  I loved dancing, the freedom of living away from home, and music…lots of music.  I went out dancing 5 nights a week, minimum.  It was such a release for me!  It was my happiest moments…I made sure to make friends with the DJ’s so they would play the songs I requested.  

But 19 years ago, today, is also the day that Kurt Cobain, one of my favorite musicians, killed himself.  I remember thinking, “WHY??”  and “he had everything going for him!”  But yet, I GOT it.  I understood.  I knew that just because things look awesome on the outside, didn’t mean they were miserable on the inside.  When I heard the news, I was so saddened.  The world lost an amazing man that day.  An artist.  Someone who saw the world in a way that not everyone could, and not only could he see it in this way, but he could share his vision of the world WITH the world through his music.  

As I listened to the news and the stories on the radio, I remember thinking, “Damn it.   Damn you Kurt.”  See, I had heard that “suicide is a permanent solution to a temporary problem.”  So I kept trying to convince myself of that.  If I could convince myself that all problems were temporary, I could get myself through anything.  So that mantra went off in my head constantly.  Why couldn’t Kurt have heard that message?  Why couldn’t he have pushed through??  What could have been SO bad that he felt he was better off dead?? Forever.

Now, as I sit here 19 years later, I get it.  So much more than I wish I did.  So much better than I should.  But I do.  I get it.   I have heard that he killed himself due to horrible abdominal pains that he could not bear having forever.  He had suffered with stomach pain since childhood and some say it is the reason he started heroin.  To kill the pain.  When I first heard this, I thought, “come on, no pain is that bad.  Take pain medicine.  Deal with it.”   Then, I got toxic mega colon.

So now, 19 years later, I think of him and I am again, very saddened.  Sad that he is gone.  But also so very sad that I understand TOO well why he killed himself.  To him, this was not a temporary problem.  This was a problem he was going to have forever, and he didn’t want to live that way.  And I get it.  I was lucky enough to finally get mine diagnosed and fixed.  He wasn’t.  It could have been me.  It almost was. 

Rest in Peace Kurt.  I hope you are out of pain and still rockin’ out!  xoxo

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Apr 01 2013
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Reflections…

While on the outside of the well, looking in, I see reflections.  My own reflection of my physical self, of course.  But also the reflections of things normally unseen.  My emotions.  My raw, unfiltered emotions. And they are not very easy on the eye!  It is taking much longer to write my story than I had imagined.  It is more painful that I had imagined.  It is causing me to go back to a place I never wanted to revisit, and foolishly thought I wouldn’t have to.

But to tell my story, to FULLY tell it, I need to revisit those places.  And while it is therapeutic to go back to those painful places as a healed and healthy woman, it is also so very painful to see how wounded I really was.  I was on death’s door begging him to let me in.  And now, I want to go to that woman and grab her by the shoulders and shake the crazy right out of her.  But I know I can’t.  And it is very hard to watch.

I dealt with some degree of depression my entire life.  The chronic severe pain that lasted 5 years sent me so far into it I thought I would never come out.  I didn’t WANT to come out.  I couldn’t even remember what life was like as a “normal” person.  I only knew my warped sense of reality.  I hated people that didn’t have pain.  I couldn’t relate to them.  And the look of pity in their eyes made me want to claw their eyes out.  But the crippling depression didn’t leave enough energy for anger or rage.  It just turned into more sadness.  It was quick sand, and every emotion I had, no matter what it was SUPPOSED to be, turned into the sadness.  Remember the movie Neverending Story?  And he is in the swamp?  They actually referred to the quicksand as “The Sad”.  It never made sense to me until now.  It is truly what it was like.

Every morning I would lay in bed with the covers over my head wishing that today would be the day that I didn’t wake up.  Wouldn’t have to face the day.  But, alas, that day never came.  I was forced, every day, to wake up, put on my “mask” and move on.  I had to plaster on a smile and pretend nothing was wrong.  Life was GRAND!  Life was GREAT!  FANTASTIC!!  FABULOUS!!!  Because, I learned, that if I didn’t…no one cared.  I was a bother.  A bitch.  A downer.  And, being the people pleaser I was, I couldn’t stand that.  I HAD to be liked.  To be loved.  To make sure everyone was happy and comfortable all the time.  Myself be damned.

Wearing the mask was exhausting and caused me to shut down and shut everyone out.  I would let people in, but only so far.  The minute it got “real” I shut them out.  I didn’t want anyone to try to get to know the real me, because I didn’t even know who that was, but I had learned through rejection my whole life, that the real me wasn’t worth knowing anyway.  So I would shut people out and reject them before they had a chance to reject me.   This left me feeling further isolated.  More lonely.  More SAD.

I began resenting everything and everyone.  I resented my husband for not knowing that even when I said I was fine, I was far from it.  I resented my young children for needing me too much when I had nothing left to give.  I resented my mother for not loving me enough and making me feel worthy of love when I was younger…if she had, I wouldn’t feel this way, right?  I resented my father for not being more on my side.  I resented my sister for being my mother’s favorite.  I resented my friends for being able to smile and laugh and have fun.  I resented my doctors for not being able to fix me.  I resented my medication for not working well enough.  I resented my body for failing me.  I resented God for letting me feel so much pain.  I resented how bitter I had become.  I resented how difficult everything was for me.  I resented how my depression consumed me.  I resented the fact that I was still alive.

Now, that I am out of the well…and looking back at my reflection…I see the pain that was in my eyes.  No mask could have ever hidden that.  So why did no one see it?  REALLY see it??  Or, is it that they DID, and that is why I pushed them away?

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Mar 19 2013
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In the “well”.

A friend of mine described her depression to me once as feeling as if she were in a well.  Sometimes she was near the top of a full well, floating in the water and could see the sunshine, but it was just out of reach.  Other times she was at the bottom of a dry well and could barely see the sunshine, but would stare at it and hope it came closer somehow.  And other times she would close her eyes and hope and pray that someone would realize the well was dry, and empty, and start filling it with dirt.  Burying her.

I have adopted this analogy now.  It fits the best, doesn’t it?  When you struggle with great depression, as I have, sunshine (happiness) always seems out of reach.   Sometimes it is so close you could ALMOST grasp it, but other times it is so far away that you forget what it looks like and just don’t even care anymore.

During the 5 years that I struggled with undiagnosed, horrific pain, I was in the well.  At the bottom.  Eyes closed.  PRAYING someone would just fill it up with dirt already.  I was done.  I needed to be put out of my misery.  I have always found it ironic that putting down an animal in pain is always considered the “HUMANe” thing to do, but to do the same for a human, is immoral and illegal.  We are allowed to “play God” with animals, but not with ourselves.  We can determine when an animal, who can not speak to us with words we can understand, has had enough and is in too much pain to carry on, yet we cannot offer the same relief to our fellow humans who DO speak to us with words we understand.   I just don’t get it.   And yes, okay, okay…there are legal issues…but I am sure that some lawyer out there is smart enough to figure out the logistics of legality around it.  (insert lawyer jokes here if you must).  But I am serious.

Though, now that I think about it, in hindsight, I am glad that option wasn’t available.  I would have taken it.

There are days that the ONLY thing that kept me alive was my family.  My children, in particular.  My husband would have understood…he would have been sad, and devastated, sure.  But he would have understood.   It was knowing that my children would NOT understand that kept me alive.  The thought of them going through life somehow blaming themselves, was more painful to me than the physical pain I was in.  And that is the ONLY reason I am still here to tell my story.

I was planning on writing a bit of my story every day.  See, it is like therapy for me.  I feel like if I get my story OUT, it doesn’t own me anymore.  I own IT.  But, I am finding that writing this is taking a bit more time.  A bit more reflection.  And it has brought some feelings back to the surface that I never wanted to see again.

But, if I write them out, I release them.  So I will press on.  I will continue to get it out.  And someday, I will have gotten in ALL out, and a new story will be created.  One of happiness ever after.

I am close.  I am now outside the well…dangerously close to the edge and peeking down in, but I am outside of it.  And that is a huge step in the right direction.

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Mar 12 2013
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The gift that keeps on giving…

It turns out, that when you get toxic mega colon, and go septic, it can lead to all sorts of other fun problems.  It doesn’t just “go away”.  You don’t just “get better”.  It sucks.  I am still dealing with residual GI issues from it all.  But, it took a very long time to figure out just how much I had going on and what we were dealing with.

After I came home from the hospital, I was still very sick for a long time.  I couldn’t eat, I was in a lot of pain, and I was exhausted.  But, well, I was a stay home mom with two young kids. So, there was no such thing as resting.  So I carried on the best I could.  I learned to just suck it up and keep going.  But I was crabby.  And started resenting everyone.  I felt like no one “GOT IT”…no one understood that just because I wasn’t hooked up to IV’s anymore didn’t mean that I was all better.  Just because I found the strength to make dinner, didn’t mean that I wanted to have to push through and find the strength to do the dishes.  Or the laundry.  Or vacuum.  Or anything.  It took all I had some days to just get out of bed.  Shoot, sometimes it took all I had to just open my eyes!  I hurt.  ALL.  THE.  TIME.

I am not talking casual aches and pains.  I am talking EXCRUCIATING pain.  

I kept going to doctors.  I went to my primary care physician, and he gave me the pain meds I desperately needed, and referred me to a GI.  I went to the first GI doctor, he heard the word “Salmonella” and cut me off and said, “Well, you have post infectious IBS”.   Asshat.  So I went to a second GI dr.  Again, he heard Salmonella, and dismissed me with, “Well, after what you went through, it will take a while to heal completely.”  And a third GI told me that if I wasn’t feeling better in 6 months to come back.  SIX MONTHS?  I couldn’t live like this for 6 more months!!

But, as it turns out, I lived like that for 5 years.  If you can call what I did “living”.  I merely existed.  I had days that were like an out of body experience…I would be watching myself move wondering how the hell I was doing it.  

This is where all my training in wearing a mask came in handy.  I would put on my happy face and pretend I was fine, because well, who wants to be around someone that is complaining all the time?  And really, it felt like no one cared.  No one wanted to hear it.  When you ask someone, “How are you?”  Do you REALLY want the answer?  Or is it just the polite thing to ask?  I found out quickly that no one REALLY wanted my answer.

I even had people, friends and family no less, tell me that I was “milking” it.  It couldn’t be THAT bad if I could go shopping (umm…we still needed food and clothes right?  And since no one offered to go for me…guess I sorta had to go…), I heard, “Well, so-and-so had Salmonella once and they are fine…”  *eyeroll*.    No one understood that I didn’t JUST have Salmonella.  I had gone septic.  I had toxic mega colon.  I could have died had my husband not forced me to go to the ER.  

Finally, after years of constant pain, a friend told me to see her brother in law.  Who was a dr. in a neighboring state and was known for being an excelled diagnostician.  I KNEW something was wrong.  Very wrong.  And I was convinced that it was not just a GI issue.  So I went to see him.  And we decided on a  pretty drastic course of action.  I was going to go under the knife for an exploratory “pain mapping” surgery.  I was put under, I was cut open, and then I was WOKEN UP!  And my organs were poked and I would say if it hurt or not.  (umm…it DID!)  then I was put back under and sewn up.

Turns out…that I had endometriosis, interstitial cystitis, and get this!  A prolapsed uterus.  However, my uterus didn’t prolapse the usual way.  Mine prolapsed because the ligaments at the top of it had stretched to more than twice their normal length.  My ginormous, infected, swollen colon had shifted things internally and apparently had decided to push that organ out of the way.  Because it was prolapsed from the top, it had been swinging around inside like a pendulum.  Hitting and banging into all my internal organs whenever I was sitting or standing, moving, etc.  And it had been undiagnosed by so many doctors, scans and ultrasounds because when I would lay down on my back for exams and tests (and the only comfortable position I could ever find to be in) my uterus would flop back into place.  Crazy right?

My dr. fixed the prolapse, and removed the endometriosis that he could, at the time of the surgery.  And I felt much better for about 6 months.  

Then the pain came back.  All of it.  I was convinced I had prolapsed again.  But my dr. told me that he fixed it and it wouldn’t have happened again this soon.  He blamed my pain on my interstitial cystitis.  Gave me meds for that and sent me on my way.  My OB/GYN said that there was no way it had happened again, and sent me on my way.  My GI dr was still saying “post infectious IBS” years later.  So the depression and frustration came flooding back…full force.  Worse than ever.  I was feeling defeated.  Dismissed.  Alone.  Suicidal.

I went to my primary care doctor and told him that I wanted to die.  I even (seriously!) begged him to put me in a medically induced coma, just so I could have a break from the pain.  I then started a wonderful cocktail of 3 anti-depressants (at the same time…hello 50 lb weight gain!).  It is that combination and my two beautiful children that kept me alive.  

After another year of this…my primary care doctor finally had enough.  He became my number one advocate.  And he helped me convince an OB/GYN to perform a hysterectomy. No one would do it because I was in my 30’s…and they would say that insurance wouldn’t approve it.  I told them I didn’t care.  I would pay out of pocket.  I just wanted the pain to STOP.

So I had my hysterectomy.  5 years after the Salmonella.  5 years of constant pain (with a nice 6 month break thrown in as a tease).  5 years of my life wasted in misery.   I had them take my ovaries too, because of the endometriosis.   When I woke up from the surgery, I knew something was wrong.  My one incision was burning.  A searing, burning pain.  The nurse just told me to walk…and gave me pain meds.  I went home 36 hours from the time I checked in, and I still knew something was wrong.  This wasn’t normal incision pain.  I had had surgery before…

So a few days later, I called the surgeon and said that I had to come in, that something was wrong.  Thank God my husband brought me in, and I didn’t go alone…I got there and found out that a nerve had been sewn into the incision.  It is rare that that happens where my incision was, but well…the salmonella messed everything up, so nothing was where it is supposed to be I guess.  So the dr. tried to give me a shot directly into the nerve.  She touched me to find the spot and apparently found it because I screamed the most primal scream and started to go into shock.  It was horrific.  My husband kept screaming at them to stop.  To get away from me.  So I ended up going home with pain patches and more pain meds, and was told that I would know in another 4-6 weeks if the nerve was trapped in the suture, or the scar tissue.  Fingers were crossed it was the suture…so that when it finally dissolved, the nerve would be released.  If it was caught in scar tissue, I would have to back under the knife with a plastic surgeon to release it.

So for 6 weeks I waited.  I couldn’t drive, I couldn’t walk or sit without pain, and I became more and more depressed.  This surgery was supposed to help.  It was supposed to make it all better.  It wasn’t supposed to cause a NEW pain!  I felt so hopeless.  Not to mention, I was also in the depths of menopause.  The hot flashes were coming so fast and furious that I was getting nauseous.  My family was sleeping in fleece pajamas and extra blankets in July because I kept the air conditioning on so high just so I could breathe…it was hell! 

Then finally, almost 6 weeks to the day, I woke up in the morning and rolled over to get out of bed and the pain wasn’t there!  I twisted myself into positions that would normally send me screaming out in pain, and it didn’t hurt!  Holy Shit!  The nerve was just in the suture and the suture had finally dissolved.  I had never been more relieved about anything.  Ever.

 

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Mar 12 2013
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Salmonella…you mother fucker.

So I am skipping around a bit.  So much for my title “ORGANIZED Musings…”  HA!  Oh well.  Bear with me.  In order to fully tell my story, I need to jump around a little….so a little back story first, and then flash backs later.

So here it is.  The catalyst to 5 years of unimaginable pain, frustration, sorrow, and suicidal thoughts and wishes.

I got Salmonella.  But not just your average, run of the mill Salmonella.  (does that even exist?)  I had what my doctor called, “The worst case I have ever seen!”.  I still think that title should have come with a trophy.  Or at least some sort of certificate.  But oh well.

I had been sick for a couple weeks before the Salmonella hit.  Going to doctor after doctor.  I had blood drawn.  I had a scope done.  I had a nuclear test of my gall bladder.  I had an ultrasound.  All led to the dreaded diagnosis of “IBS” Which, I think stands for “Intestinal Bull Shit”.   I hate that diagnosis.  It is such a “I have no idea what to call it, so I will call it this..” diagnosis.  It’s bull shit.  Anyway…by the time I got REALLY sick, I was stubborn.  And pissed.  And frustrated.  I called my husband home from work (Which I had never done) and told him he had to come home, that I was just completely non-functional and could not take care of our two young children.  So he came home, took one look at me doubled over and told me he was taking me to the doctor.  I refused.  What was he going to tell me that I hadn’t already heard??   So the hours went on.  And I got worse.  And worse.  And WORSE.  Finally, my husband couldn’t stand it anymore and he called the sitter across the street and he forced me out the door, into the car and into the ER.  By this time, I was barely functioning.  I was so dehydrated from horrific diarrhea.  My diarrhea was now a lovely red color, that I had assumed was from drinking a small bottle of red gatorade earlier.  I would later find out that I was wrong.  I was very wrong.

No one in the ER was taking me seriously at first.  It was busy that night, and I was a chick with diarrhea.  It wasn’t until I was running down the hall, ass flapping in the wind in the lovely gown, and literally shat on the floor.  In front of the doctor.  He got very alarmed and said, “how long has this been happening?”  I said, “hours.”  And he said, “No.  How long has it been like THIS?  This color?”  I said, again, “hours”.  Well, then let me tell you…I was taken seriously.  Everything happened so fast after that.  Next thing I knew I was being admitted, huge vials of  blue/green blood was taken from me (“is it supposed to be that color?”  I asked…”NO.”  Was the answer….)  Stool samples were taken, and I was given cups of horrific liquid to drink to prep for an MRI.

Turns out, I had gone septic.  My red shit?  Well, it was pure blood!  And, I had developed a condition my GI doctor said was called Toxic MegaColon.  My colon (at least 1/2 of it) had grown to more that double it’s size.  I was in such indescribable pain at that point.  Morphine drip was ordered…IV’s placed…and more tests were run.  No one knew at this point that it was Salmonella.  That diagnosis wouldn’t come for a few more days.

So I spent 6 days in the hospital hooked up to Iv’s and morphine.  2 IV’s blew in my hand (which hurts like a bitch!!) and I was refusing visitors.  I didn’t want to talk to anyone…or see anyone…I couldn’t concentrate on anything other than breathing through the pain at that point and wishing for it all to be over.  At one point I was told it was possible that I may lose part of my colon and go home with a colostomy bag.  I wanted to die.  I was 34.  No way was I going to live the rest of my life carrying around a bag of my own shit.  Eww!

Luckily it didn’t come to that.  I was healing…swelling was going down.  I was VERY VERY lucky that my husband rushed me to the ER when he did.  If  I had had my way and stayed home, I may not be here writing today.  I could have died.  It was a very strange feeling.  Here I had thought many times in my life up to then that I WANTED to die.  And now, I was so glad that I didn’t.  Though, there were times in the 5 years that followed this stay in the hospital, many times, that I had wished I had died.  But I will get to that later.

I will never forget that it was Mother’s Day.  My son had just turned 6 a month earlier and was in Kindergarten.  I had to miss the Mother’s Day tea that Friday because I was in the hospital, but the kids were supposed to visit me on Sunday.  Well…on Sunday morning, the nurse walked in, in what looked like a full Haz-Mat suit.  She told me that the stool cultures came back and it was salmonella and I was now isolation.  What the what?!?!  Salmonella?  No way.  Come on.  And wait…my kids can’t visit me??  On MOTHER’S DAY???  It was awful.

I finally got to go home on Tuesday.  With orders to eat a very bland diet, and to bleach the toilet every time I used it, and to scrub my hands constantly.  The health department was calling me constantly trying to figure out where I contracted this…and we still don’t know.  But I did find out that you can get it from just about anything.  Not just raw eggs and raw chicken like I had thought!

Salmonella led to years of health problems for me.  So, being released from the hospital didn’t mean it was over.  It was all just starting.  And I had a long way to go…

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