Save Laurens Heart

days like this are what get to me most.  i can “deal” with a whole lot but the events of today is an all too familiar story and it always crushes me the same. i am always insanely frustrated when i have to face and accept my limitations, and when they interrupt something i have planned it’s even worse.  for a long long long time i wouldn’t make plans.  this goes back to learning the hard way over the past year that if i planned to do something i probably wouldn’t feel good enough to do it and would have to cancel anyway.  as i’ve mentioned before, it’s been hard to keep friends and a social life (some people just don’t understand), and while i have amazing friends that have stood by my side it never gets harder for me to say NO to an invitation.  what if they just stop coming one day?

about two months ago i actually slowly started to venture out, to try and have a social life again.  i was still met with disappointment (i.e: i wound up in the er on the night i had planned to see a show called Fela! that i had been dying to see), but on the nights i could carry out plans i felt like a million bucks and was able to stay high on that feeling for weeks.

anyway, today was important to me.  i planned to spend the day with one of my most favorite people in the world, Gela.  Gela is my grandma and it’s her 75th birthday today.  i had big plans to spend the day with her, hang out, celebrate.  she doesn’t live so far from me but far enough out of manhattan where i’d have to do a bit of traveling —i had it covered, was going to borrow a friend’s car and be off!  free!  i woke up this morning feeling awful and still got ready. it took me forever.  i felt awful when i left the house, and still continued on.  i bought her flowers to take with me, really beautiful lilies, and when i crossed the street from the flower store all i kept thinking was: there is no way i can drive right now. it was difficult to even cross the avenue!  like lead weights no my knees and ankles.  i waited at my friend’s for a bit, hoping it would pass but i only got worse and had to eventually say the words out loud “i’m not going to make it today”.  ugh, like a knife stabbing me in the heart.  so disappointed in myself, so sad, so frustrated and impatient.  why body? why can’t you just get it together already?

but then i remember to just chill out, that none of this negativity is going to make me better or get me to her house for that matter.  and then i became proud of myself:  the old Lauren would have pushed it. big time.  i would have ignored all the warning signs and drove out there with a vengence.  i would have done all this just to prove to myself that i am not a “sick person” and that i can do whatever i want whenever i want.  looking back, i find that i did a lot of things for that reason, just to prove to myself that i am not a wimp, that i hadn’t lost the war.  but these days i’m trying so hard to love myself.  every part of myself and to be understanding, be my body’s friend instead of its nemesis.  so, i let myself be angry for a bit, then i accepted i just couldn’t do it, and now i am just sad but at least i am resting.  my old ways would have gotten me there today, sure, but then i would spend abour four days in bed recovering.   so yea, i’m proud i could just chill.  and i’ll look forward to another day with Gela.  it is what it is, and it sucks.

all the books i’ve read about this diet that i am on mentinon a “die-off reaction” that usually occurs around this point in the process.  i am not sure if this is what is ailing me today (it could be a 90807879 other things of course, like going off certain meds, acupuncture reaction,etc…), but it sounds a lot like the descriptions in the books.  good news is it means the diet is working (getting all the toxins out of my system) but i have to deal with a “flu” as it passes.  always something.

I always forget what it feels like to walk down the streets when the cold wind is blowing against you.  It’s funny how you almost crave fall weather by the end of the summer, and now it’s here, and neeldess to say I am less than excited about it.  From this point on, this is how I prepare myself to leave the house since I am always always freezing cold:  leggings or stockings, thigh high, thick socks, another pair of socks, boots, jeans, and layers and layers of shirts and sweaters, scarf and gloves. I feel like I did when I was 6 and I got bundled me up to go and play in the snow.  My hands and toes are like little popsicles and my fingers turn BLUE because my circulation stinks (another fun and interesting part of my condition),  so I have to keep extra warm.

On a warmer note, I am smitten with acupuncture.  I go every week.  It has transformed my body.  I walk in there feeling achy and awful and weighed down, and I leave there hungry/wanting to eat and feeling refreshed.  So amazing.  It sticks with me for a few days, so it brings relief.  Ahhhhh.  It has helped so many different things over the several months that I have been going.  Truly amazing.  So, I look forward to a big yummy meal tonight (I am really trying hard to put on some weight)!!!

No results from any of the tests yet.  Waiting is always the worst part.  It’s during the waiting that your mind can really go nutso.  I’ve diagnosed myself with like three different things already today.  I have to train my mind to think of other things and maybe I should stop reading medical books and googling things at 3 in the morning…  could be helpful.

longest cold. ever.  it’s crazy how long i’ve been sick with this cold for.  i’ve forgotten what it’s like to breathe normal through both nostrils. it’s quite annoying.

it’s sunday night and i am looking over the week ahead of me.  as i scan through my calendar, this month is looking so different than say, two months ago.  i have gotten to a point where i am seeing the docs way less frequently, which i couldn’t be more happy about. now the spaces are 3 months instead of 3 weeks or every other week.  although, my days are still jam packed with appointments of many kinds. healing is my fulll-time job!  now i just have more alternative healing style appoitntments and “detective work”.

let’s recap.  i am currently waiting on answers to a couple of tests that i took, tests that just any doctor won’t tell you about.  no, it took me forever and a pacemaker to find dr. Y who let me in on all of this knowledge:  now, with my aches and pains and cardiac condition, and stomach condition, i have been tested for lyme disease before.  probably like five times or more.  apparently the tests i was given (the lyme tests that any doc or hospital gives on the regs) is only 65% effective.   it’s only a screening test!  how very interesting that these could have been done in vain.  apparently there is a super special blood test out there that works hard core for lyme (especially if it has gone undetected for years), and so i took it about two weeks ago.  the results take 14 business days!   hence, why i haven’t posted about it until now because it is an understatement to say that i want to know the results NOW!  this lyme test was one of the many many reasons i broke down in the cab that day after dr Y: can you imagine?  all of this? all of these awful health problems due to a tick bite that went undetected years ago? it seems as if so many things can be avoided if we only had GOOD, CARING doctors who knew their stuff or were good enough to say “i don’t understand this, but let’s find you a doctor who can help you”.  that would have been amazing.  it’s like, i could have gone on forever just feeling awful and taking medicines that will eventually poison you!  it makes me so angry that there is so much information that we just couldn’t know.  ok, enough with my rant, back to the lyme test: i was always running around outdoors it is very possible.  and the link between lyme and my problems … well, there are just too many coincidences, it was so worth my time to go and get this test taken.  i’ve spent a lot of time reading about lyme and autoimmune disease since then as well.  all of this info makes me feel like my head will explode sometimes. we all know how desperate for answers i am… $1000 later (I’m not kidding, the blood test was $985 not covered by insurance), i wait, almost hoping it comes back positive just to get a damn answer!  then again, i don’t really know how i feel about it.   ugh, another thing that swims around in my head making me crazy crazy.

i am also waiting for other analysis’ that dr Y conducted. Stuff that i won’t get into here, but tests that will hopefully point us in the right direction to healing my stomach.  it’s been pretty good, actually.  no pain, but then again i haven’t had much of an appetite so i am not eating so much.

here’s to draining sinuses and a healthy week!

I want a brownie sundae. bad.

i’ve wanted it for a week.

the brownie would be thick and fudgy, fresh, with tasty walnuts chopped in it. and of course, warm…
vanilla bean ice cream on top, with thick, rich hot fudge drizzled all over the plate. and a little cup of it on the side as well.  fluffy, sweet whipped cream, rainbow sprinkles, and a too-sweet, blood red maraschino cherry on top.

i want this so bad for the past week, that i almost got into a cab and went to get one at serendipity by myself today.  i look for it in the kitchen cabinets after i eat, the drawers, the refrigerator, i CRAVE sugar ! sugar sugar sugar.

too bad my big diet is all about the opposite.  no sugar, no bread, no dairy.  there goes my brownie sundae.

what can i treat myself with?   i look for things as a “treat” all the time!  aaahhh!! i am really into doing this the right way though, so i am fighting these cravings. i just keep thinking of a day of feeling good, no aches and pains and no stomach problems.

here is my request:  if you can, please have a brownie sundae in my name this weekend. enjoy every single second of it!  while you’re at it have a good, tasty, dark fall beer, too.

Been sick all week with a cold that seems to have taken over NYC.  Everyone I know is coughing, sniffling and sneezing.  Everyone.  Feel gross.

where do i begin?  what do i even say?  today, october 16th one year ago this whole entire journey began.  ONE year. it feels like a movie, like all of this couldn’t possibly happen within one year!  it is so hard to comprehend, so hard to process it all.  i am overwhelmed. not to mention that i have been in pain all day long.  getting off the roids is an absolute mess.

when i look at what’s happened over the past year, there is good and bad:
a lot fell apart, there was a lot of sorrow and times of being terrified to the core, a lot of relationships that were tested and couldn’t stand this real-life test, and eventually dissolved.  you learn a lot about people.  a lot of the people i expected to be there for me just weren’t capable of doing so on some very basic levels. not their fault, but i have a lot of sadness about a lot of things. there’s balancing family and friends, and trying to be a 26-year-old. i see the world differently and it’s changed my life completely.  of course, there were great feelings as well: learning each piece of good news as I recovered showed me how incredibly amazing our bodies are, and pointed to what’s truly important in life.  i introduced a new thought to my once-hurried days “what do i want to spend my precious time on?”  i appreciate every single moment now.  every breath; every morning i wake up, i say a big thank you. i’m not sure who i am thanking exactly, but i say it.

i have also gotten to see a very genuine caring side of people at times —people who weren’t even necessarily family or close to me before this, but felt so compelled to give me support just “because” and i am forever grateful. of course, the fundrager was something i will never forget and it makes me smile during the bad times.

i am conscious of my body and what i say and do, and i found that i have an incredible, inextinguishable will to live.  i want to live live live! i want to feel and know and learn and do. i have to.  to know this about yourself is a true awakening, and suddenly the blue sky seems much more blue than ever before and you’re closing your eyes to remember how things really actually taste (like i’ve never tasted chocolate before!) —or even watching those you love, really observing their manorisms like it’s the first time you’re seeing this person.  it’s a vision.  i close my eyes and savor so much.  the thing is, you never know when you’re gonna lose it.

coincidentally, i was cleaning out my phone last week and came across an IM conversation with my man from this very day.  my phone saves ongoing convos with the same person. strange, because i rarely use IM but i guess it was the best way to communicate at the time —when i could barely move.  by this point last year, i had already stopped working, i couldn’t anymore: i did not feel well and couldn’t get around without fainting, and i had spent the day trying to make some extra dough while helping out a friend:

me “You there? I’m on my phone”

T  “Hi”

me “Hi Babes, I had to leave early from Jeff’s cuz I was feeling so sick. I came home and I’m feeling worse, it’s scary.”

T  “where are you?  What can I do to help you??”

me “In bed , it’s the weirdest feeling.  Like, zero energy . Was supposed to head to Queens soon but I can’t.  “

me “Remember when i felt like this in July?  It’s like that but worse”  “This can’t keep happening to me every couple of months.  What is going on?”

T  “yea I remember.  Shit I wish i could help you”

Cut to three hours later. He came home to find me in the very same position.  We attempted to watch a movie but at this point my chest was really hurting.  I thought I had bronchitis, I couldn’t breathe.  I could barely dress myself to get to the ER.  We decided to go to Lenox Hill since we know a doc there that was working.  Hours in the ER and it’s almost morning again.  Everything seemed ok.  The doc had a hunch though, something wasn’t right on my EKG.  He decided to order one more test, an echo (like a sonogram of your heart), and I told T to go home and try to sleep before work —it wasn’t going to show anything.  He went home and i waited for the test.  Well, the person who administered the test did so, looked at me funny, asked me if i felt faint all the time, and if i was having trouble breathing.  then he left the room to get the doctor.  this can’t be good.  they came in and explained that my heart was pumping at 15%.  that’s 1-5.  normal is 50-65%.  they went into intensive care mode and moved me to a special area of the ER, put oxygen on me, and hooked me up to a heart monitor.  one nurse was assigned to me and I called T, who was just getting to sleep and told him he had to come back up, and don’t be scared but I have an oxygen mask on and oh, by the way my heart is failing.  He was back in a flash, and since then I have seen him try and get comfortable sleep while sitting upright in a hospital chair way too many times in one life.  (it breaks my heart).

From that point on this blog has been my “safe place” to vent.  I come here and type my fears and frustrations and anger onto the screen.  the rest is documented history right here!  i’ve written about every procedure and doctor visit since January (from October through December I didn’t do anything; it was the darkest, hardest time of my life and I thought I was going to die twice.  I was carried to and from the bathroom, i needed help showering, it was the lowest of the low).  I am deeply positive and I know I will keep getting better so I come here to spread my positivity as well as my information.  So, thanks for reading this.  In some way anyone who is reading this is contributing to my getting better.  I know you’re sending me good vibes…

Tonight I will celebrate LIFE.

This was my biggest decision of the day since I really haven’t been vertical at all.

It was one of those days, just woke up like this.  I was fine, totally fine.  Sunday and Monday I was achy but nothing new and not enough to keep me in bed.  And then, TODAY.   I wake up literally saying “ouch”  my eyes are barely open and I’m trying desperately to find a comfortable position.  Well guess what Lauren, there is no such thing as comfortable today and you’re just gonna have to deal with it.

So, my mind goes super crazy the entire day.  Is it the steroids? I lowered the dose, so it’s possible.  This, then makes me angry and sad that I depend on these little pills.  Is it just that I’m getting a cold?  Is it something else? Should i be worried?  Complete crazy-girl mode.  So, I went back to bed and slept for hours.  Now I am awake and pacing.  No painkillers for me, trying to give the liver a break over here.

I feel (and look, I might add) like a ragdoll.  So awesome.

Dr. Y has advised me to start a new diet.  It has to do with getting my stomach back in working condition.  The meds have really messed things up in there. Basically, for a month I’ve decided to go with a (mostly) plant based, carb-free (candida and mold free) diet.  I started yesterday.  This is supposed to balance out the good and bad bacterias in your stomach and bring peace and happiness to the intestines.  Yes, please!  She told me 65% of your immune system lies in your gut!  So, in theory, if the tummy is working as it should then I should start feeling a lot better.  I am more than willing to try, that’s for sure.

We can all imagine how hard it is to change our eating habits.  Especially since once upon a time I considered champagne and appetizers a sufficient dinner (shoutout to Jenny K and Nubes), and of course, since my all time fave meals are Lombardis pizza, anything fried and dipped in numerous sauces, or cheddar toasts from Freemans down the block.  No more of any of that.  I mean, I have been pretty good for awhile now (no alcohol since the Ticker of course), it’s just a matter of being a bit more strict and careful.

I’ll turn it into a game of some sorts and get myself excited to make quinoa and fish! Now that’s a partay!  Seriously, it’s not so bad.  Talk to me in week two.