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Posted Sep 29 2008 12:00am

So, it happened again.  I thought I was in the clear.  I had been feeling pretty ok and paying LOTS of attention to my stomach.  I have been pretty confident that I wouldn’t get one of these attacks considering I do acupuncture, massage, eat extremely well and generally massage and take care of my stomach every single day to prevent them.

For those who have forgotten, I get these “strange” (yes, even doctors use that term) colitis attacks.  After seven painful times they finally diagnosed me with ischemic colitis, a condition that is part of my scleroderma.  This is what essentially happens (we think) :  My tiny blood vessels in my intestines constrict and spasm, blood is then not flowing properly to the intestines, the intestines become inflamed and infected and basically all hell breaks loose.  In no exaggeratin whatsoever I CANNOT MOVE when this happens.  I spent Friday on the floor of my bathroom.  Hugging the water bottle, trying to stand up but everytime I would the shooting pain prevented me from being vertical.  Couldn’t even talk.  The chills, the sweats, awful.  I spent fours hours like that until I could get to the hospital and felt conifdent enough to leave the toilet (sorry to be graphic).  It is so embarrassing, such a feeling of helplessness.  We decided to call an ambulance being that I could not walk at all.   And this is where the nightmare begins.  Anytime you get other people involved…

The EMT guys are basically clueless and we are telling them what to do.  I have never seen two people move slower.  I explain I cannot lie down only sit up hunched over and need to be wheeled in a chair.  They don’t comprehend this foreign idea.  Long story short, I hunch over and walk myself out of the apartment and climb into the damn ambulance.  I explain that I need to get to a hospital quick quick quick, I am hallucinating from pain.  They take this opportunity to learn how to take blood pressure (a seemingly impossible feat for this one EMT), then the driver pulls over, takes his time punching in the hospital we are going to and we continue on a breezy ride to the ER.  NO SIRENS.  NO RUSH.  Me yelling at them.  Thomas so concerned because he has never seen me in so much pain.  We get to the ER same story.  I basically walk myself in with Thomas holding me up, if I would have waited for this EMT to go in, get a wheelchair, and bring it out for me at his pace it would have been hours.  He was seriously strolling into the ER.  Thomas and I booked by him on his way in.  I wanted to seriously murder these two idiots. I hated them.  So much for the ambulance.  Definitely NOT paying the $900 bill I will get, when the car service driver that we thought about calling would have taken better care of me.  The ambulance guys weren’t even pushing to check me in, he was still trying to get the blood pressure cuff around my arm as I am writhing in pain begging for a doctor.  Clueless.  I would hate to see if they had a do or die emergency because they would fail and cost someone their life.  Incompetent to say the least.

We tried NYU ER this time around considering it is closest to my home.  After what seemed like hours, they finally get me some pain meds … dilaudid, one of the strongest, and the only thing that works in these cases.  I will continue to receive an IV of this drug every hour on the hour … that’s how bad it was.

At this point, the pain is gone so I can talk.  They want to keep me overnight, watch me closely.  We wait for a bed.  I am told I am being taken to a step-down unit; a room where there are people with special cases.. 4 people to one room with your own nurse in there for the whole night so you can be monitored carefully.  The pain is still coming back on the hour and I just can’t wait to lie down and be taken care of.  I approach the room and as we stop in front of my destination we realize that the terrible screaming we have heard from way down the hall is, in fact where I will be shacked up tonight.  Awesome.  A guy, screaming jibberish and insults at the top of his lungs.  Thomas and I look at each other like, “when will this end?”  I stay there overnight but get no rest.  I am afraid this psycho is going to get out of his bed and “punch us all” “hurt us all” or worse.  He is terrifyling, screaming awful things, hitting the nurses.  They had to tie his hands down. And he is directly next to me. Only a curtain separating us.  Combine that with the beeping, lights, shot nerves from pain, and general anxiety of being in a hospital and I am near breakdown already. Terrified.

In the morning I miraculously wake up feeling better.  This is strange considering these attacks usually land me in the hospital for 5 days at least.  I had gotten two IV infusions of two antibiotics and since I was feeling better I asked that I not get anymore.  The doctor agreed.  She came in and explained she had never seen this type of thing before (surprise surprise, that never gets old… hearing doctors tell you how rare your condition is).  I basically school them all, I know way more about this than any of them.  I know what I need, when I need it and I just hope they listen to me.  I know my body better than anyone. I then get moved to a different room with only one roomate and I am told that if I can eat a banana or toast I can leave, and they will check in with me soon.  Then I am basically forgotten about for hours.  I ask for the banana constantly.  It takes them 3 hours to get me a damn banana.  No one paid attention to me except for the creepiest med student ever who was like, hovering in my room asking me weird questions that I later deemed inappropriate when I was sober and at home.  I still need to follow up on this.  He was highly inappropriate (which leads me to my ultimate feelings of being uncomfortable, vulnerable and scared in every hospital).  Anyway, I get the damn banana, eat a bite, throw half of it in the garbage and call the nurse.  Get me out of here.  That happened like, 5 hours later she literally kept telling me “sorry hun, i keep forgetting about you”. Do not call me hun or sweetie I will bite your head off right now.

The worst is feeling so helpless, so forgotten about.  The nurses don’t come when you ask, they don’t get you things you need (i.e: she took my iv out, I was bleeding, she went to get a band-aid and went missing for 45 minutes).  I hate being “sick” to begin with and the mental strain of feeling forgotten about and like you have to fight for everything is exhausting and super scary.  I never ever want to be at the mercy of doctors, creepy med students, nurses, or an er again.  I really mean that.  This experience, like every other one, was so terrible that I basically had a breakdown when I was finally discharged Saturday night (9 hours after first being told I could leave that day).  It all started to happen like after the Lenox Hill nightmare… I couldn’t sit still, felt uncomfortable, unsafe.. even in my own home.  I bit all my nails off, felt totally scared and dark and unstable.  I have been trying to recover ever since.  The bad dreams, the terrible feeling of leaving there with no answers, it’s all too overwhelming for one person to take.  I don’t know how much more I CAN take. The unkown is eating away at me.  No one can say why these attacks happen when they do and most importantly, how to prevent it!

To top it all off, I get home and go to fill the prescription of painkillers they sent me home with.  We run to make it to the pharmacy before it closes where I am told that it is invalid…. the doctor never signed it.  Her resident had no business signing a controlled substance.  These people couldn’t even get it together to fill out a damn prescription!  And here I was, helpless, still in pain.   I was livid.  I had to spend Sunday morning tracking the doc down (not easy) to call in the prescription.   It’s like a HUGE joke was being played on me.  This is what people in need have to deal with ?  This is just how the U.S. treats their sick?  It’s disgusting.  Disgusting.

The only thing I knew how to do yesterday to keep my mind off what happened was to surround myself with friends.  I wanted friends over my house and keep me distracted.  It worked, but here I am on Monday left alone with these same thoughts.

I have an appointment with Dr. K today.  Let’s hope she redeems herself after the last joke of a visit at her Brooklyn office.  I’ll just walk out if it’s too much.  I am so at the end of my rope.

I am so fed up and just sad and worst of all.. scared.  Scared of my own body.  I don’t know what to eat, what to drink, what to do.  I am paranoid that something will trigger another flare-up.  I am uncomfortable in my own skin. I just don’t know what to DO anymore.  Things like this set me back weeks in the progress that I make.  Mentally and physically.  It is so sad to me to lose all of the hard work, the intense mental training I put myself through to get through the days.

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