Much like the weekend, I found it extremely hard to get out of bed today.  It’s the same old thing, muscles hurt so bad and constantly naush.  I even had to cancel an important appointment this afternoon —I just can’t make it out of the house.

I am anxious to get the muscle biopsy results back, then we can start to treat this.  I’ve always been against steroids but at this point I will take them just to have a summer. Just to be able to get out of bed.  I am so annoyed today.

It hurts to even speak.

Where does time go?  I find myself asking this question so much lately. 

An entire weekend has passed and I honestly do not know where it went.  I spent yesterday on the couch and today in bed.  I was not feeling well at all: muscle aches, and the sedatives and painkillers they gave me for the procedure on Friday really really messed me up. my mind has not been right. totally out of it. i’ve been naush since friday and feeling like my head is cloudy.  i can’t focus, i’ve been super sleepy, and just generally fuzzy.  it was the first time i ever got the “gas” to be sedated, and it wasn’t a good feeling.  i knew right away that i didn’t like what it was doing to me.  i was terrified when it hit me in the operating room. i was trying to tell the nurse but i couldn’t speak, i tried to move the mask away from me but my arms were tied down.  i couldn’t do anything. so scary. ever since then i haven’t been right and i can’t wait til it’s all out of my system.  it’s not fun at all.

after my mini surgery i was taken to the recovery area. i expected to be in and out, this is a piece of cake now that it’s over -not the case.  i was there for 8 hours.  apparently i had what looked like an arythmia (the bad kind) at 1030 in the morning.  i was being monitored the entire time, so the nurses printed out my heart rhythms and proceeded to study it.  they all agreed it looked like V-tach.  Not good.  they told me, but i couldn’t keep my eyes from rolling in the back of my head long enough to understand.  at some point i did process what they were saying (finally) and i was a wreck. completely stressed and completely… confused!  didn’t they just tell me one week ago in this very hospital that my heart looked great?  that there were no odd rhythms the entire week i was there?  am i going crazy? how did i not feel this alleged arythmia?  so, i spent hours upon hours in recovery, hooked up to machines.  my nightmare was that i would be admitted.  i couldn’t shake the panic, i couldn’t focus or sleep right, the drugs made me feel awful, and i just wanted to get the hell out of there.  my nightmare was coming true.  what is going on?!  i could not open my eyes for anything.  i could not stay awake. i couldn’t remember my nurses name and i just wanted to see my mom.

my mom and cynthia couldn’t stay with me in recovery for long.  they were allowed short visitation periods of 15 minutes then they had to go back to the freezing waiting room. it was unbelievably cold in there.  i felt so bad that they had spent 10 hours just waiting for me, in a meat locker.

5 o’clock rolls around and finally, a cardiologist comes to see me.  he had been paged a mere 6 hours before.  it wasn’t until he came that i could finally breathe again.  he looked at the printout and notified us that it was not an arrythmia but it was in fact my own heartbeat; for some reason the pacemaker had briefly stopped pacing and my own beat came through. but, it corrected itself.  phew, ok, my heart isn’t deteriorating, it wasn’t a bad rhythm, i am not in trouble, all of these thoughts flooded my mind.  within seconds they were instantly erased by a more important thought “let’s get out of here NOW”.  that seems to be the last clear thought i’ve had all weekend.

i came home, sat on the couch, and i’ve been here ever since. let’s hope i feel better tomorrow and that those icky drugs are out of my system.  i hate the way they make me feel. 

to a new week, and to a very long time until i see the inside of a hospital room again…  let’s get the summer of healing started!

lots of love

L

Almost 10 hours in the hospital for what I was told would be an “in and out” procedure. I’m so dunzo. Details to come looks like I finally may be getting discharged from the recovery area. Longest day ever. Get me outta here.

Been sitting in this hospital since 6am -the exact time they told me to get here. I went to admitting, registered and then… Wait wait wait. I am starving (not allowed to eat before the procedure), freezing, and tired. I did not sleep a wink last nite. At all.

so, i have to be up at Columbia at 6:15 am tomorrow!!  yikes!  that. is . early.  

BUT, it’s good because i can get this over with as soon as possible.  i have been waiting to get this done and i am so anxious.  i am sure i’ve been through worse but at this point i am just so burnt out of anything hospital related that i am dreading going in, getting an iv put in (my poor arms), dealing with the biopsy, and then the stitches, etc…  but, tomorrow i will be in warrior mode and get through it like a champ!  i have to.

mom is picking me up somewhere in the 5 am hour —is it even daylight then?

i will be checking in afterward. well, after i come home for a siesta and then arise rested and biopsied!

feeling good today, just tired and of course, my legs always hurt.  i’ve been noticing new pains and i can’t walk for very long without becoming exhausted.  i need to work on this.  restorative yoga, here i come.  i can’t wait to get into a routine.

lots of love 

Lauren

not you! 

the blog… i just can’t seem to do it, to just sit down and write about the hospital!  i don’t know why i’m procrastinating, it may help to just get it out.  it may help to talk about the poking and prodding, the 6 am blood draws, the nightmares, and black and blue veins — so i can stop remembering, so i can stop staring at them.  

i’ve been in that post-hospital funk that i get in after a long stay.  i get really emotional and just generally dazed.  my brain can’t seem to function right. it’s like i can’t “do” anything.  i looked at the date today; the 10th of … JUNE?  what? when did june happen?  where was i for that?  i feel like i’ve been in a black whole —where has ten days of my life gone?  how do i get them back!  i didn’t even know it was june!  and that’s the type of thinking that has me furious today.  one of those days that i am just angry at my body.  yup, sometimes i just let myself be angry.  why did you betray me body?  when will i stop being tested?  will it ever stop?  crazy questions with no answers. so instead of hanging out inside my head where i’ve been for three days, i’ll stop socializing with those angry, icky thoughts and take a step toward salvation.  

and so, i write….

over all a good hospital.  i have a rating system.  this one surpassed lenox hill day one when they cleaned the bathroom (i waited 2 days and had to practically drag someone in there at lenox hill to get that thing cleaned. i could vom thinking about it).  anyway, Columbia Presbyterian treated me well.  amazing doctors, amazing nurses, smiles and comfort, i felt safe.  everyone knew their stuff and was on their game.  professional, clean, business.  that’s how i like my hospitals. the staff made a week long hospital stay easier on me.  my visitors did, too.

all of my doctors: AMAZING.  where have they been?! i have finally found a team in NYC that I can trust!  YES!  I have decided to take all of my care, everything, over to Columbia and get treated under one roof. my head doc, the heart transplant doctor, is no joke. she runs stuff over there and she is very respected.  i am so happy i found her (my doc at Cleveland Clinic recommended I follow up with her locally —it took us 4 months to get in to see her).

after many tests, many many doctors, millions of questions and a couple of sleepless nights I left.  But this time I left with answers.  

good news first?  my heart function looks awesome!  how crazy is that!  i am so proud of her, my tough Ticker.  my doc says that the pressures in my arteries and heart along with the output and function look GREAT.  yup!  the pressures were actually NORMAL.  can you believe that?  it made me so happy to hear those words.  everything i have been trying, everything i have been working so hard on…. it was a blessing to get a sign that i am on the right track. it’s working!  my EF (the amount my left ventricle is pumping) is now at 35% !!  It has improved greatly; from 15% in October when this all started, to 22% in January before the ticker went in… 35%  yay!  Normal is 50-65%.  And I will get there. Just like I said I would before I left for Cleveland.  Scar tissue or no scar tissue I will work so hard, eat what I have to, heal and meditate and yoga my way to normal and i can’t wait to say “I told you so” on this one.  I am very aware that scar tissue will never turn into regular heart muscle again but I will get my Ticker back and she will just be back with scars —such a badass.  

So, do you know what this all means?  Well,  according to the doc, presently I am not a candidate for a heart transplant.  Meaning, my Ticker looks too good to get on that list! So, I have heart failure but not bad enough to be on the heart transplant list.  This is what I hoped for her, my Ticker.  To do everything I possibly can under the sun to get her back.  And I will keep doing it every single day. Cardiac Rehab, Alternative Healing, Energy healing, eating right, even adult stem cell therapy…. EVERYTHING.  We have to watch her closely and keep at it, but good news for now.

aaaaahhhhhh.

and because we wouldn’t love the sun without rainy days, here is the bad news.  the news that has me so bothered.  the news that brought me back up to columbia today for 4 hours to see 2 more docs… news about my autoimmune problems.  the underlying condition that has wreaked havoc on my body.  the reason for the heart, the stomach, the pains, the mystery illness that no one can seem to grasp a hold of.  when we tested my muscles in the hospital, the docs found that my muscles show inflammation and are weak.  there is some sort of muscle disease present which explains why i have been in so so so SO much pain. for a year now, i have complained incessantly about my neck, shoulders, upper arms, back , hips and legs.  i told Dr. S of 7 years please, there’s something wrong.  he eventually gave me steroids and that helped a little. but these docs, they are professional and they want to get to the bottom of this. why are my muscles inflamed? what is going on? why can’t i get out of bed for 3 or 4 days at at time?  it happened one night in the hospital. i woke up at 4 am crying. just like always the first thought on my mind as my eyes open is OUCH.  they gave me pain meds to control it in the hospital; i told them i just couldn’t take being in pain anymore.  when asked what i did over the past year for this terrible pain i said “lie in bed and cry” cuz that’s how it’s been. and my (soon to be ex) doc just let it happen.  didn’t want to question things and test my muscles.  why would he do something logical like that?

so, my muscles look not-so-great.  and funny, it’s in the exact places i have been complaining about.  before my new rheumatologist makes any decisions on what drugs to treat me with (usually steroids or more immuno-suppressants), he wants further info.  so, i am going in for a muscle biopsy on friday.  and yes, it’s as gruesome as it sounds.  it will be a mini-surgery where they will take out pieces of my left shoulder muscle.  i get sedated and they will use local anesthesia and then… dig into my juicy deltoid.  brrrr, it gives me the chills thinking about it. i am scared. the biopsy will show if the muscle is deteriorating, if it has fibrosis, if it is inflamed.  i am also upset because before the Kicker went in last January, I never even had stitches!  Now, it’ll be the Kicker in the front and a big scar on the back of my left arm.  So annoying.  

My colonoscopy was clear except that the biopsies taken showed inflammation. We are not sure what this means yet.  My new Rheum is on the case.  

I want to be clear what makes me most sad about this whole thing:  for 7 years I have done what I am supposed to do to help the autoimmune problem.  My doc of 7 years has failed me.  I thought I was safe, I thought I was being treated considering I have been on toxic drugs for 6 years to slow down my immune system so it doesn’t attack any organs —say, my heart or something. I have complained and it has fallen on deaf ears.  He just doesn’t care.  This has been right under his nose.  Over the past year he has told me that my blood tests look “great” and he used the word remission three times in 2007.  He had me hopeful, he had me thinking I beat this thing and it had run it’s course.  When actually, it was attacking my heart.  And now, my muscles and my stomach.  It scares me because it’s out of control and we don’t know how to stop it.  It scares me because for 7 years I was told I didn’t have actual Scleroderma —just some symptoms of it.  When really, I actually do have Scleroderma, my entire body screams of it!  My new Rheum is probably just way smarter than my soon-to-be-ex Rheum but then again, this whole autoimmune disease is one big gray area who the hell knows what is going on inside me.  People suffer with so many symptoms everyday that go untreated.  We don’t know how to cure Scleroderma, we don’t know how to stop it from attacking the body.

What I do know is, I’m gonna win.  Not the other way around.

i am home and the first two days after i get home from the hospital are always so so weird.

it’s amazing what a week in the hospital does to your mind. i get really confused and jumble the days together and i don’t remember things clearly —especially yesterday when i was highly highly medicated (and by medicated i mean completely sedated and loopy) in the morning; it affected my whole day and night.  i mean, i was on so many narcotics that at one point i actually looked around my hospital room and loved it!  like, cozied up in the bed, thought it was the most comfy place to be, loved my little area in the room, and had a perma grin. actually enjoyed being there. not normal.

i have lots of stories to tell. good news and not so great news. but i guess the best part is that we have some answers!  and that’s always a great thing because the unknown is what keeps me awake at night. 

i’m not yet ready to rehash some details so this is all for right now.  i have lots of stories from my stay so get ready. 

i can never thank everyone enough for your continued support, kind words, positive vibes, and general awesomeness during the especially tough times.  you have no idea what it brings to me.  it really is the essence to keeping the fight.

my sleep schedule is totally non existent so i am wide awake.  right now it’s watermelon and a funny movie for me and my man. 

good night and happy summer! yay!

xxL

I’m home!!!!!!!!!

Hi everyone!

I am still here at Columbia, in my hospital bed.  So much has gone down over the past two days.  I was so exhausted/in pain that I couldn’t speak yesterday nevermind type!

There is a constant stream of doctors that come in to see me and when I am finally alone I get sent down for one test or another —so I am actually really really busy here.

I had been feeling physically good most of my time here until yesterday morning; I woke up at 4am, in the most excrutiating pain I’ve ever felt.  Seriously, I woke up from the actual pain and opened my eyes crying.  I couldn’t even cry, it hurt so bad.  This is the same type of “flare ups” Ive been getting for about a year.  Every time I get one it seems to be worse than before. It usually lasts two days and the best way to describe it is that I feel as though I had just worked out for 8 hours at a gym, and then got hit by a truck, and then got beat up.  Not normal.  It hurts to breathe, hurts to lie down, hurts to do anything.  It’s awful.  So, in the past (as most recent as 2 weeks ago), I go to my rheumatologist to check my blood while I am having the pain.  Every time he tells me the exact same thing: he cannot tell what it is but “here’s some steroids” and my blood always comes back looking perfect —no indication of infection or inflammation.

Well, yesterday a doctor actually (gasp) did a test for more evidence.  It was the scary muscle test I had told you guys about.  Basically they check your nerves and muscles so first, they shock your nerves to make sure the response time is what it should be.  They say my nerves looked good.  Then, the second part of the test involves sticking long needles into your muscles so the tech can measure the fibers and electricity in your muscles.  I got a big needle into my calf, thigh, groin area (ouch), hand, forearm, upper arm, neck, and upper back.  And guess what?  the same exact places where I have been complaining about indicated muscle disease —meaning, inflammation!!   At least that explained my terrible pain.  So, now the next step will be a decision to be made by my neurologist as to whether or not I should get a muscle biopsy; with the hopes it can tell us more and therefore finding the best way to treat it.  When discussing the test with my rheumatologist here, a lot of interesting comments came up.  He said he would like a muscle biopsy because he would hate to just give me steroids to put a band aid over it (thank you! finally! a doctor who thinks!), and he also said something i have heard 45984 times during this entire journey —that i have a very rare case of a very rare disease and my symptoms are not specific to just one —rather, they fall into this huge gray area and i am always looked at as this very strange, very perplexing case.  

one thing i know for sure, i am firing my current rheumatologist who has treated me for 7 years because this was strike 3 for him as well and i will continue with the rheum here at columbia.  i was in tears yesterday after that test for many reasons. i mean, you trust a doctor that has treated you for 7 years and you want to believe he wants you to get better.  meanwhile, i’ve been taking a drug for 6 years that hasn’t helped… it’s apparent since I have the muscle inflammation currently and i am still taking it it’s a gross med, an immunosuppresant, used for chemotherapy in larger doses.  it helped me in the beginning 7 years ago but the doc never once thought to tweak it? and maybe take me off this toxic med?  plus, he is just so full of himself that he never listens to me.  he didn’t listen to me when i was complaining last summer about fainting —he said i was having anxiety. turns out, it was that my heart was failing!!!  so, i was hysterical yesterday just so upset and feeling so helpless and regret that i trusted this person who clearly does not have my best interest in mind.

Then, I went down for a lung test, still crying and upset.  I was so sore yesterday that it hurt to breathe in (still does) but i forced myself to deal with the pain and just get the lung function test over with.

i am still here in the hospital because there are also the outstanding stomach issues to address.  how do we prevent those colitis attacks? why are they happening? so, i am getting a super fun colonoscopy tomorrow. YIKES!  today, it’s all about prepping for it. I’ll spare you the details but just picture the fact that I have to “clean out” my tummy with the help of this bubbly nasty drink that i have to chug a gallon of this afternoon.  so nasty.

so, fingers crossed that i can go home tomorrow after my colonoscopy.  I would love nothing more. i miss my own bed, i am starting to get super stir crazy. it’s insane. 

let’s also hope we can finally get some answers and figure out what to do about this pain.  i cannot be in pain anymore, it was for too long, and it’s so terrible that you just become this cranky, sad, ragdoll. we tried a bunch of different painkillers and we found one that at least takes the edge off.

until later… sending love and positive vibes,  Lauren

Happy Birthday MOM!!!