Tag Archives: pain

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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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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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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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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