Save Laurens Heart

I am exhausted but I wanted to post an update.

When I use the word “exhausted” tonight, I refer to a feeling I have that just hasn’t lifted since this insane weekend.  I am just so overwhelmed.  I can’t find a better word.  I am not sure how much one body and mind can take.  Overwhelmed in every sense, in every way, in every thought, from the second I open my eyes to the second I attempt to close them (and then lie there for hours). It’s haunting. My greatest fear is that one day it will be one thing too many and I will just snap.  I’m not even sure what I mean by “snap”  but it would be like checking out mentally, just not being able to handle stuff.  These are my worries.  But, I got some good news today so not to fret, you won’t be witnessing a breakdown tonight…  and at the end of the day I don’t dwell on the negative, dark stuff enough to give myself a chance to really go downward.  I am determined that these things won’t take over my life, that they will not alter my personality and make me some cranky “why me” person.  It’s just not my style.  But I will admit, I am exhausted, and this most recent test in particular was a tough one. ” Sick and tired of being sick and tired” as The Kid would say.

Let’s get to Dr. K first.  Not as dissapointing as the Brooklyn train wreck of an office visit but still quite annoying.  I felt like I wasted my time by going up there considering a lot of my questions could not be answered because a bulk of my blood tests could not be faxed to that office as I sat there and waited.  Some did come through and I sat across from the doc as she read them for the first time aloud to herself and myself.  I did complain, and she did look embarrassed. Nothing groundshaking.  I am still waiting for the important results that mean something to me.  Basically I think she is a great resource to have on my team.  She is smart when it comes to natural healing but her organization and her office management is a zero.  I guess I have to take a xanax before I go see her and just chill out and enjoy the ride.

Dr. K keeps things on my radar that may be good for me in the future and I do feel safer having her set of eyes on my body along with the others.  You can’t be too safe.  She generally has the same view on this illness as my other docs do:   “we don’t know what to expect, we can’t predict this, what you have is very rare, we just have to watch you closely and hope for the best.”  Makes my stomach drop every time.

We found out from my hip x ray that my right hip is a bit deformed and we have to watch it closely … the fluid and connective tissue that separates the top part of the leg and the pelvic bone are sparse and getting rigid.  This wouldn’t be good if it progresses.  Dr. K says that by rubbing the MSM cream she prescribed me 5 times a day along with yoga and massage we can prevent progression.  Good news is, it’s at the very beginning of any sort of deformity so , we watch and we take good care of the bod.

As for the stomach mystery?  She didn’t have much to add either.  It’s still just that, a mystery.  No one can tell me how to prevent it from happening again.  She’s not even sure why exactly it happens when it does. My new plan is to make a plan to avoid an ER and a hospital at all costs IF it happens again.  It’s all about keeping me feeling safe.  And boy, have I yet to get into the NYU hospital story with the med student who is basically going to get into a lot of trouble.  I just do not want to talk about it here yet before I file the official complaint.  Brrrr creepy.  Awful traumatic awful hospital experience. Ewwww.

Ok, now for some happy news.  It’s great because just when I was feeling so done, so BURNT OUT, a spark comes and lights me up again. Aaaaah. Due to some crazy and rare technicality, I will continue to be covered on my present Cobra Insurance coverage for another year.  PHEWWWWwwwwwwwww.   I almost cried on the phone when I heard this news.  This was such a weight lifted off my shoulders.  WOW. WOW. I mean, I still pay for it each month but it is NOTHING in comparison to the individual plan prices those robots were throwing at me. Thank you!

Time to turn off.  Ahhhh.

I called two weeks ago and again last week to ensure that all of my test results from that day in BK would be here in the Manhattan office to go over. It is the whole purpose of this visit: to discuss results and make a plan. Are they here ? NO The snide girl on the other end of the phone at the BK office seemed offended both times I asked her to please make sure my tests got to the Manhattan office. “Of course they will be there”. So I sit here, waiting, again, because people just don’t care enought to do their jobs. How long will I wait? I do not know but I am in no shape for this. No patience anymore. I am so dunzo. Whatever is after dunzo, that’s what I am.

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.

I just had the worst, extremely traumatic past 24 hours.  I cannot write about it tonight, I am simply too upset but I will get to it tomorrow night or Monday (I am trying my very best to recover some sort of calm in my being).

Not to worry, I am ok physically but mentally, not so much.  I am so overwhlemed, feeling so helpless that I don’t know what to do with myself.  I’ve never felt this way before.  Nothing is helping and I find myself pacing my apartment back and forth endlessly. I am not in a “good” place right now.  And it’s unfamiliar territory for me.

I don’t feel safe.  I do not trust instituations, doctors, HOSPITALS, and the like to take care of me. I feel very vulnerable and scared and am constantly disappointed by the healthcare system (ha, what am i saying… lack there-of) in our United States of America.  Sickening.  I won’t sleep tonight.  I’ll be pacing, trying to make myself feel better after an awful awful day and last night.  Stomach is in knots.

A general rule of thumb for me is that if it’s gray or raining outside, I am probably going to be in pain for most of the day —well, achy is a better word.  Yes, like a 90 year old (actually, sorry 90 year olds, some of you could feel amazing I just don’t know how else to describe it), I can usually tell the moment I open my eyes how the weather will be outside.  The damp and the cold just go straight to my bones and leave me feeling very achy, heavy and generally uncomfortable.

Needless to say, today is one of those days and I am just dealing, trying not to take any painkillers. I hate taking a pill to feel better (especially when I already pop about 13 per day) so whenever I can talk myself out of it I do.  Usually what happens is I deal with it, but by the time 7 or 8 pm rolls around I am so cranky from being uncomfortable all day that I might as well have taken the painkiller … much more preferable to a cranky mess!

So, yesterday I was in bed all day and today I had leave the house —it was dentist day and the first visit of three to fill those cavities.  yikes.  Now, it’s couch.  I can barely move I am so tired.  I decided to take the day off from the insurance insanity and will continue my quest tomorrow.  Sigh.

Today is such a warm apple cider day.  Or a hot buttered rum from Clinton Street Baking Co. Yum, I’ll miss those this Fall.

i have been on the phone with insurance companies, the insurance department of new york, and the like for most of the afternoon.  i am so frustrated.  basically, there are no options for someone like me, who had to stop working due to health problems and their cobra is running out in two months.  i have tried calling every single person, tried what seems like everything, even the scleroderma foundation!  my current best option? when my cobra runs out in december pay $1200 -$1400 per month for health insurance (because i definitely need a plan where i can see out-of-network docs. not one of my docs is in-network).  and they tell me this with a straight face over the phone.   who can afford that?  not me that’s for sure.  what does one do?

i guess i am even more bothered because i didn’t get much sleep last night so i am cranky.  it felt like the longest night ever.  everytime i would drift off to sleep i would awake to find out only ten minutes had passed.  i hate those nights.  at some point during the game of twisting and turning i realized that my left ear was hurting.  it’s been hurting for awhile on and off, i figured i was getting sick like an ear infection or something.   but of course, in the middle of the night your mind starts to really have a go at you.  i, of course start thinking… can scleroderma spread to the ears?  probably.  can it make me deaf? probably.  am i having a flare up and maybe there is inflammation in my ears and that is why it is hurting? am i imagining this?  at this point, you can forget about sleeping Lauren.  i mean, i could really get myself anxiety ridden if i let all these fears take over me.  usually i am really good at just breathing and trying to relax and let it go but last night it was so difficult.  i could not get away from my mind no matter how hard i tried.

more “stuff” to get done.  in the meantime, scleroderma was featured in AM new york today. you see, i am very trendy with this disease. lol. it’s all the rage.  check it out, interesting article on stem cells and autoimmune disease called “Resetting the Immune System”

until later when i am in a calm state…

The Kicker is 8 months old today!

It feels like these 8 months have gone by so fast, yet then again, they really haven’t.

There’s been a LOT that has gone on since that day in Cleveland Clinic.  I was so nervous going into that procedure.  Wow.  It seems like a different person I am talking about.  I was so cold in there… I kept Uggs on the whole time for that reason!  Here I was, totally naked on the operating table except for these big brown boots!  I just sit back sometimes and let myself be amazed at the human body and it’s ability to recover. Today is one of those days. We really are quite amazing organisms.  I have gained so much respect for my body over these 8 months, watching it go from very weak when I could barely walk to much stronger.. I am now walking for blocks and blocks and blocks without giving it a thought!  Even though I like to live in the present, allowing myself to look back every once in a while gives me a boost when I see how far my Ticker has come.  Such improvement. Yes, it’s sad to really think about some things in detail like say, the first time I found out about all of this last October (that’s a very traumatic thing for me), but I am so happy that we are seeing improvements and they aren’t stopping any time soon, that’s for sure.

I am really proud of my bod today. It’s a good day.

some good news:  second day in a row without any stomach pains!  yup, i have been able to eat every meal i wanted for two days now, which is a true milestone for me. huge progress. it’s really exciting.

i definitely attribute it all to the mayan abdominal massage in combo with the acupuncture (we focus on my stomach issues big time there).  the improvement i have seen since i began both of these things has been crazy!  when i compare each month to the past one it’s truly amazing what my body has been able to recover from. i am amazed constantly by the human body and i feel reborn.  i am so happy when i could eat!  although i am still super careful about what i do put into my belly.  i get really scared that something may trigger those terrible terrible pains…

turns out over the past year while we were occupied with my ticker (emergency trips to the hospital, countless procedures, and the like), other parts of my body started to feel neglected as well.  i’ve been having pains in my mouth when i eat so i went to the dentist today after much protest (yes, even after all i’ve been through i am terrified of the dentist.  i prefer the pacemaker/ defibrillator implantation to getting my teeth cleaned).  well, i have six, yes, SIX cavaties!  can you believe?  i mean, they are small but still, this upset me a lot.  it just made me sad for minute thinking about how this was happening because i was so preoccupied with major stuff.  it’s like, i cannot keep up!!  you feel so out of control sometimes all the time.  i had a brief thought of: why am i falling apart at 26?!  but, i pulled it back together and stopped with the negative thoughts.  it’s fine, it’s something we can take care of, and it could very well be from all the meds and chemicals in my body breaking down the enamel of my teeth.  hey, at least we caught them while they are small. let’s patch those suckers up!  i go back next week to get started.  i had to be sure that i told the dentist about my condition (duh) because it’s very important he uses a certain type of anesthetic on my gums —turns out some novacaine shots have epinephrine in it which would cause palpatations. and that’s def not good…

basically, it’s been a week of stuff like this. getting things done, working on the bod.  i am happy when i see results and it keeps me going.  i am definitely smiling as i type this and i am so proud of my ticker for being strong and my body has followed her example.  we are going to do this!  i am going to be 100% again.

i also made an appointment to follow up with dr. K.  i feel enough time has passed since that horrendous visit to her brooklyn office.  i’m not annoyed anymore and i did take a lot of tests that day.  i am interersted in both, the results and dr. K’s feedback.  this time however, i am sticking to the manhattan office and i will most certainly tell her (in a nice way) about my experience that day. yikes.  i see dr. K in two weeks.

here’s to a fantastic weekend.  it is officially autumn in nyc.  the smell and the chill in the air say so.  autumn in nyc is my most favorite time.  last year, this all started in october (we found out my heart was pumping at only 15% on october 16 2007), and i remember feeling so sad because i was missing out on my favorite time to walk around the city.  i cannot wait to take advantage this year and walk everywhere. walk walk walk, that’s what my cardiologist says.  it’s a great goal for me at the perfect time of year.  it only adds to my drive to get the ticker going!

i am going to get lots of rest tonight in hopes of going to meet up with some fellow tumblrs in prospect park tomorrow.  i take each day as it comes, so let’s see how i feel when i wake up.  here’s to feeling good!