it’s days like this, when i wake up in so much pain, and without any refreshing sleep that i just want to take the steroids and stop these terrible aches already!

i made a choice to read as much as i can on the steroids because i am really scared  to take them due to the adverse affects they can have on the body.  i am so sick of taking a quick fix to patch up symptoms while the underlying problem isn’t really being addressed —only to find out i have developed some other major problem from the actual drugs that are supposed to help me.  not to mention that i do not look forward to being bloated and puffy and completely CRAZY cookoo whlie i’m on them (prednisone makes me very irritable and anxious, unable to sleep and sit still).

i am in tons of pain today.  i think i did way too much this week.  when i feel good i seem to push my body and i pay for it —big time!

so, what do i do?  the doc says that he is hoping this dose will actually repair my muscles while giving me the strength to get out of bed and erase the bad days.  it sounds promising and how i wish they could repair my tired muscles, they deserve a break.  they feel old and achy all the time and they just need a break already!  BUT then again.. i am just scared. i’ve heard so many horror stories, and i’d love to go completely homeopathic and cure it all naturally but nothing i’ve tried so far has ever made a difference in the way i feel. i have actually gotten worse over this year -most of which i dedicated to eating clean and taking supplements, juicing, etc…

so what IS the CORRECT answer?  how very frustrating to be in a position where the decision you make is directly affecting your body… now, and long-term.

so, i sit on the couch, exhausted from trying to sleep all night and in a lot of pain. i am not a happy girl right now.

maybe i’ll take the roids for a couple of weeks and see how it goes?  i’m desperate.

i feel like i’m in some fairy tale.

last night is this colorful blur of people and sounds.  i am still mentally processing everything;  at any given time last night i felt like everything that was happening was not real!  to say i was overwhelmed is an understatement.  not only hadn’t i been out in that environment in awhile but i have also never been the point of attention. i am so grateful and overwhelmed —in a good way.  

what an amazing night.  and all because of you.

speaking in front of the room was, of course, the toughest part of the evening for me.  i was nervous and so concentrated on keeping it positive and happy. it was also important to me to get across how important carrying on and helping others is to me. as i stood up there i had this tremendous thought and at the time, i couldn’t find the words to describe what i was feeling.  i knew it would take a while to form and cultivate in my brain before i could express the way i felt at that moment, and now it’s here:

during those very celestial moments i was standing in front of a room filled with love, i thought to myself “how could i ever be mad at this hand i’ve been dealt again?”. “how could i ever be angry at my body, my illness, my work in progress?”  you know, sometimes i have my down days and i am frustrated with my body, and i hate that it has betrayed me in the ways it has and although i am seeing improvement and those angry days are happening less —they still happen, and it’s hard to NOT be angry at your limits. no matter what form they come in.

BUT, that very moment something clicked within me.  how lucky you are Lauren; you get to experience this outpouring of love and you’re seeing firsthand the genuine goodness in people. through my trials, i have gotten an exclusive front seat to the essence of humanity (not to sound dramatic). i’ve seen what people can do for other people when they are compelled to help another.  how lucky we all are, my family and friends and everyone in that room last night, to live something a lot of people may not ever experience or know enough to appreciate it. at that one moment last night all walks of life stood there, united, and the energy was alive and glowing.  everyone’s faces had this similar complacent smirk and it was beautiful. breathtaking.  i wish i could contain it somehow and recreate it again.  that feeling is something i will never ever forget.

i can compare it to when you see a shooting star.  there’s something about being witness to a happening so much bigger than you, so larger than life: lucky and humbled.

so, thank you again, and this time, i thank you for giving me a space i can try and go back to when and if i am in a hospital bed, an operating room, a doctors office, or just a bad state of mind. last night’s energy will be the place i take myself back to again and again.  and i will feel safe.

just for that moment alone, just to see your faces, just to experience that sensational energy, it makes my journey a lot easier to understand and accept and carry on with a force that i seem to have found from all of you collectively.

on that note, sweet dreams to everyone.  i hope you can take something magical away from our experience last night like i have.

i hope this doesn’t sound too cheesy. i mean every word.

hi summer loves

so, we’ve got answers on that biopsy.  according to my doc there were no real abnormalities found in the muscle and zero inflammation. WOW.  now, while this is great news, it is also coupled with the same old “WTF??” every time we get test results.  my body constantly contradicts itself.  it shows weakness and they expected to find inflammation and some key as to why i am weak yet, nothing…  the unkown remains, yet i can be happy that my muscles aren’t deteriorated.  phew.

so, back to the non-stop search for healing and feeling good.

the rheumatologist consulted with my neurologist and they feel that at this time they want to put me on a hefty dose of prednisone (ROIDS) for a couple months.  they feel that not only will this help with quality of life (being able to get up and go), but it is possible the roids can repair the muscle.  this all sounds promising and it is tempting however, i am very scared and apprehensive of steroids.  not only does prednisone make me coo-koo-bananas (severe anxiety, super antsy, moody, etc..), but i do not like what they do to you body long term.  they ruin your bones, mess with your immune system, and mess with your hormones.  it’s all very catch 22.

i have a lot of decisions to make and i really want to think about this before i swallow those pills.  there’s a lot that worries me about it.  the last thing i need is to create more problems for myself.  there’s nothing worse than when you take a drug that is supposed to help yet you have to trade off something for it.  in this case, it’s a lot that i am not sure i want to risk.  but then again, i don’t want to spend the summer in bed.  sigh.

well, at least i have tomorrow to take my mind off things momentarily!  it’s the famous FundRager and i am going to wake up feeling amazing and it will be a happy beautiful day!!!  i am honored and very proud of my friends who have worked their tails off to create this succesful, kick-ass event.  it is major, and wonderful, and i am grateful for the amazing response and genuine goodness of all the people from every phase of my life that are coming.  what a great opportunity to celebrate life and to celebrate each other.  i haven’t yet thanked the FundRager crew on this blog yet and I would like to take a second to do so.  their hearts are enormous, their love is unconditional, and their friendship is priceless and rare..  i am a lucky girl:

Barbara Taylor, Christine Berni, Danielle Del Vecchio, Jessica Catherall, Megan Goldman, and Sofia Vassilakis.

Thank you. there are no words.

So, I am off to bed to catch some beauty sleep and rest my head.  “to roid or not to roid” will continue on wednesday, but tomorrow is a day for fun.

take a second tonight to love your muscles.  you never know how precious each body part is until they are singled out and/or hurting.  the body is an amazing wonderful gift and we often forget to thank it and give it some much needed rest and love.

xoxoxoxo

I’m really happy today. I woke up much much better than the past three days. I wasn’t in pain -what an amazing feeling! It’s like waking up with a new body after three days of terrible pain. It makes a world of difference. I think I got better from working on my mental state. Last night I wanted to go out for something that was very important to me. I had plans to go out to a lounge and see a bunch of my friends that I haven’t seen in months and months. I was very unhappy when I woke up yesterday because I was feeling so ill again and I was already annoyed that I probably wouldn’t make it out. But, I was determined. I was going out to support my man! So I rested the entire day, ate right, and took a disco nap around 6 pm. Then, I woke up, took some pain meds to take the edge off the terrible feeling in my legs, and forced myself to go out. As I was getting dressed, I kept saying outloud “c’mon Lauren, you can do this. Don’t be a wimp and give into the pain. You were walking around and going out for months with a weak heart unknowingly. You’re actually safe now so get out of the house!!!! Get out! Get up and move!”. I just kept pumping myself up. I know, I sound crazy but I talk outloud to myself a LOT. It helps. And, it worked! I was able to go out, see my friends, and enjoy my night. It was only a couple of hours but the confidence and healing it gave me isn’t something that can be prescribed or measured or tested. It’s amazing what being around your friends can do for you. I am missing the social aspect of life and I used to be out all the time! It was great to be in a different environment! I went to my cardiologist this am and I am feeling good about the visit. I will tell all when I can get to my computer! And please send some good vibes to my tired legs. They hurt constantly. Its like walking with lead in my legs. Happy Friday to everyone. Lots of love and summer smiles!

i still have not heard from anyone over at Columbia regarding my muscle biopsy.  the waiting is starting to wear on me.  this is when i start to think crazy things like “oh man, it must be bad, that’s why they haven’t called”.  i mean, i think they should call either way —even if it’s not back yet, just to ease my worries.  they DID say i would hear from them by wednesday.  

today was another day where i woke up and my very first thought was “ouch!”.  total pain.  3rd day in a row and i just couldn’t deal with the pain anymore.  so i took the painkillers that they prescribed for me.  they take the edge off, yes, but i do not like taking them. they leave me cloudy and weird and not in a fun carefree way.  but, it’s my only alternative to feeling terrible pain.

i am off to Columbia first thing tomorrow morning.  i have an appointment with my cardiologist up there.  i have to see her as a follow up to being in the hospital.  maybe i’ll get some news while i am there…

still not feeling good today.  same old story, muscles ache, really weak and tired.  my neck is so weak, i feel like my head is too heavy for my body.  it’s the worst i am constantly tense and never comfortable.  i thought about it… i don’t think i’ve actually felt truly comfortable (where not one thing hurt at all), in over a year.  that could really make someone cranky.  it’s a terrible, annoying situation.

can you imagine, for over a year never being able to get comfy?  it’s like slow torture.  but, i’m not here to complain.  i am here to get better and just deal.  the thing is.. how much longer do i have to deal?  i sit here, waiting for the results of the muscle biopsy and i wonder what they will tell me.  will my only chance at relief come in the form of those icky steroid pills?  it’s happening too many days in a row now, this has to stop.  i already have plans to be juiced up on the roids (haha) so i can attend the FundRager next week.  crazy, i never liked to plan before and now my life’s all about planning.

so, since i’ve been home for the past two days i just decided to be ok with it.  i love my apartment, it’s my place to be “zen”, my place for healing.  we’ve turned it into a sanctuary. it was a necessary thing to do when you spend so much time at home.  one of my favorite spots is sitting in my bright green chair in our backyard.  it’s amazing to be able to sit outdoors, i often feel like i am not even in manhattan.  it does wonders for me when i feel all caged up by my body and i have to stay home… it doesn’t seem so bad when i can sit in my green chair and read, write,  or just sit and stare and do nothing.  i feel like i actually “went” somewhere — and i often do go to other places as i sit in that green chair.  i am grateful i have that space to help me heal.  i do not know what i would’ve done without my garden the past two days.  it really helps to make everything seem not so bad after all this.

i just had to come inside because it’s about to pour, but i definitely got a nice few hours in today.  now, when will i hear about that biopsy?

waiting is my least favorite state.

as soon as i know, you will to!

lots of love

L