i often forget when I sit down to my blog and start typing away that other people are actually going to read it. it’s my place to vent, my therapy, and it’s been so essential to getting through the past year. so, it always comes as a surprise when i am reminded there is a world out there reading! the world in which i blog in particluar has been unfamiliar to me until now. turns out Tumblr is super powerful and there is a very compassionate fellow Tumblr out there who has been following my blog and felt compelled to do something to help out (actually, there is a second and she has been awesome as well). Thank you Kevin. He has decided to raise money to help with my never ending medical bills at a get-together he is planning for this saturday in Prospect Park. if he raises $2000 he has promised to shave his head into a mohawk. quite impressive.

here is the event he is arranging. i think it’s worth going to just to meet the person behind it. as discussed with kevin, since each day is so drastically different for me physically, i can’t say how i’ll feel saturday, but if it’s a good day i will certainly be there to meet my new friend(s).

i am always apprehensive by default when people offer to help… maybe it’s because i’m a born and raised new yorker, maybe because i still don’t like admitting i need help (even after all this craziness), maybe because we’ve all become a little disconnected from each other over these years (ok that’s a bit too philosophical to get into here)… but after chatting with him i remember that feeling i got after the fundraiser my friends so amazingly arranged for me in june … there are genuine people out there. people who truly care. and i am so very lucky to have the opportunity to see this side of humans. i’m very blessed to have been given this lense through my experiences. i end the day feeling oh so lucky, complete with my scarred, strong, badass ticker and the kicker that keeps it pumping. i am more determined to get to 100% than ever before.

sweet dreams

xxL

more on project website tomorrow. i still can’t think of a name!

Spontaneous remission

From Wikipedia, the free encyclopedia

In medicine, spontaneous remission is recovery without known reason or cause.^[1] Spontaneous remission are usual in many health disorders ^[2] and are more commonplace than it is generally assumed,^[1] principally in young people.^[2]

As per usual yesterday was pretty much hell (although it subsided in the evening after I finally broke down and took some painkillers) and then today I awake with no trace of how I felt less than 24 hours ago! You would never know that yesterday for most of the day I could not even stand up straight! I am grateful when I wake up in less pain. So today started out good. The perfect day to begin my planning..

I know I may have left you sort of hanging with all this talk about my “ideas” so I would like to share with you what has been keeping my brain very occupied all day (all week) long. I finally sat down and wrangled in my brain long enough to put it into words in an email, so I will just copy and paste what I described there since I believe it does it justice:

“….Basically, the idea is to have a place for people to go on the web
that is “all things autoimmune” . It will be a website complete with
social networking capabilities that is essentially an information hub.
It will be professional in design yet easy to navigate. The problem I
have found is that it is so hard to find information on your own
disease and I have had to go to many sources, read through many books,
speak to many people, and learn the “hard way” as to how to manage my
illness. Seven years later and it is still a battle —and many people
aren’t even thinking clearly enough to investigate as much as I have
after they’ve been diagnosed with this “gray area’ disease. Since most
of us have done all the legwork and parsed the “good doctors” from the
“bad doctors” or tried a certain diet, alternative healing therapies,
etc. that have worked for us… then why not share the information and
make the resources available online? It can be an insider’s guide to
managing the disease. Just a few ideas are to have the following
sections: a full list of doctors, alternative healers (acupuncture,
energy healing, massage therapy, etc…), a section dedicated to all
about drugs complete with side effects, a section for diet, and
perhaps a blog or articles that can be featured that would help to
cope in living with these diseases (for example, I get Mayan Abdominal
Massages for my stomach and my massage therapist could write an
article about this technique that people can do on themselves
at home with Castor Oil).

This idea sprung out of the past year. My autoimmune disease took a
turn for the worse when my scleroderma set sites on my heart and left
it with 70% scar tissue! It’s been quite a ride, and my wonderful
friends held a fundraiser in June to help with medical bills. When
350 people showed up and I made a speech about scleroderma and other
autoimmune diseases, so many people that I knew started coming out of
the woodwork “I have fibromyalgia, I have this, I have that, my mom
has lupus, my cousin has MS…” It was like I made it ok to talk about
these things just on that night! I thought,there needs to be more of
this! ….”

So this is the project. I am very excited to get started. I want to just slap it up on a website right now! But, patience Lauren, it has to be just right. I am “web-producing” this weekend. How do you like that term? Then, we’ll see who can design it with me, etc. Lots of ideas that I want to incorporate. I have been trying to think of the perfect name for the website…. Any ideas?

hurts. KILLS. all morning. woke up like this.  been on the floor in a fetal position hugging my hot water bottle for hours. awesome.

Hands down, the toughest part of this all is the mental aspect.  That is, keeping from going MENTAL.  The usual deal with autoimmune disease is the fact that each day is so different.  you can be feeling amazing one day and absolutely dreadful the next.  like two different bodies.  and of course, in my story, with amazing news like yesterday’s it is always hard to get some concerning news the very next day…

today was a tough one.  and i am not one to usually elaborate on the bad days on this site.  i am very much about focusing on the positive but i think it’s just as important to “vent” and face the reality that yes, this stinks sometimes and i just have to let myself be in a funk and feel sad for a bit.  today was one of those opportunities.  it began when i woke up feeling like lead.  my stomach once again acting up, pain pain pain are the first words in my head.  how could i feel so amazing yesterday and this terrible today?   it takes me a while to get out of bed and i am exhausted by the time i shower and actually have to leave the house for an appointment. i think, i could just get back into bed and lie there.  now, when you start the day feeling physically broken down to begin with, you are much more sensitive to everything.  i was down and i knew it.  the day was long and throughout the course i received several invitations to go out to dinner or to a couple parties this evening.  it’s been a year and although it’s still nice that i even keep getting invites despite the fact i say “no” all the time, it never gets easier to say no and pass.  i would absolutely love to go out (and little by little i have done what i can on my terms), but it really hurts me to actually say those words out loud: admit that i have limitations, admit that the reality is i do not feel well enough, admit that my life has to be completely different than it was say, two years ago.  i hope i don’t sound like i feel sorry for myself because this isn’t the case and i feel stupid even talking about it, but being social was a huge part of my life, it’s part of my personality, and as a 26 year-old living in NYC I enjoyed/enjoy my social life. i loved getting dressed up, the ritual of getting ready, music on, hanging with friends, etc…   i sometimes worry on these down days that my world is getting smaller.

these thoughts usually only last for a very short time because i am always present in my body and the fact is that i am very very happy to even be here.  to even be walking around and sitting up and able to do stuff on my own. there was a time not so long ago that i couldn’t even walk to the bathroom by myself. so, i allow myself mourn and move on.  and the next time a down day comes i will do the same.  and hopefully with time, i can start saying “yes” because i feel good! actually, that definitely will happen.

just as i am ready to call it a night i open my mailbox to find a letter from my rheumatologist at columbia.  test results.  i sit down, and open it up to find my bone density results and i am not happy at what i see:  a note from the doc at the bottom “Lauren, mild degree of bone loss -don’t forget your vitamin D and calcium – plan to repeat in one year”  The study reads “Indication: Osteoporosis” and just underneath that “Age: 26”.  They tested my neck, spine, and hip, and all were the same (my forearm was normal). Not gonna lie, this sent me into a minor tailspin for a couple minutes.  Those steroids!  Why do they come with such a price?!  A million thoughts go through my mind, worries, mostly.  I go through angry and sad and scared and annoyed and angry and back to scared.  What will my bones look like at 60? at 80? next year?!

But, I reel it back in. Get it together Lauren. All that matters is right now and right now you should go to bed.

ok so i can’t sleep yet.  i’m super tired but my brain is buzzing.  i was going to force myself to bed with no blogging but i can’t help it!

so, here’s the deal, some background to put the good news in perspective:  the amount of scar tissue on my heart left my left ventricle in bad shape.  basically, we have been looking at the same picture since october ‘07: that is, the left bottom wall and the back wall of my heart simply do not move.  the scar tissue suffocates it.  since the beginning i have been told by a bunch of doctors and negative nancies that scar tissue doesn’t ever turn back to regular tissue therefore my heart will not likely come back.  and from the beginning i have said it is absolutely going to come back.  i know it. i just know that i will be 100% again.  yes, my ticker will be scarred but in a rock and roll, badass sort of way, and it will be pumping away.  and ps all those people (including doctors) along the way that looked at me like i was crazy or unintelligent or both, and said it wouldn’t come back… well, none of them (three in particular flash before my eyes as i type this) are in my life anymore.  get rid of the negative. that was step one.

so, we’ve all been patient.  i knew and still know this would be a long road and i am more than willing to walk it, slowly.  when i was going to this appointment today however, i did want to hear good news.  i did want to see the glimmer of hope in that gray and black screen.  it was a good day.

the doc i saw is my general cardiologist.  he is an old school doc and i like having him in the background (he’s been there since the beginning).  he controls my heart meds and has tons of experience.  we started the test today and he was delighted to see the slight movement my back wall was giving. flutter flutter. i just stared. yay!  i recognized the change right away! almost a year of staring at these tests and i know exactly what i am looking for and this time… it was different!  doc tells me another piece of great news:  my left ventricle also seems to be getting smaller (he measured it).  this is great news because when the heart is not doing so great it tends to enlarge whether from inflammation or general loss of function.  to see my ventricle shrink in size to a more normal measurement it also a sign that things are going in the right direction.  SIGHHhhhhhhhhhhhhhhhhhhhhhhhhh.

doc goes on to explain that now, in hindsight and given the information he believes it was in fact the “collagen disease” (as he calls it) that caused this.  some of the reasons he gave included the fact that throughout this adventure my right ventricle hasn’t been affected (thankfully).  he pointed out to me that if it was a virus that attacked the heart it would have affected it globally —including that right ventricle. the fact that only my left is involved and the scar tissue (collagen) was deposited only there is a sign that it was my autoimmune disease flaring up.  and what a flare up it was.   wow.  he also made me feel really great by being so eager to work WITH the columbia team and share information.  he told me i am welcome in his office anytime and that he wants to see me in 8 months!! 8 months! that is the longest i’ve heard  in… ever!  that is unheard of for me!  and yesterday columbia docs have me off until four months from now.  i am feeling like a person again. a real life living person. not some specimen for poking.  that sounded funny.

orders from the doc? walk walk walk!  i asked him if the roids have anything to do with improving the heart.  not directly, the roids actually help me get up and out and walking, moving, etc… so if that’s the means he says to keep at it.  he wants me to be active, not push it and go like, heavy cardio on a treadmill, but he said he wants my heart to be active. no problem.

i decided to treat myself to some fresh veggies from the farmer’s market in union square after the appointment. i also bought some flowers since i had such a ‘pep in my step’.  i did a lot of thinking and i had such an “A-HA” moment in the midst of the organic fruits, vegetables, meats and cheeses, and the passionate foodies from this and that farm tending to their stands.  it was all registering.  everything is starting to make sense…the book i am reading (Autoimmmune Epidemic… read it!), what doc said about the autoimmune flare up, the past year…. i think i know when it happened!!!!  i think i know when my heart was attacked by my own body! yea, i think i’m right. picture (timeline that i sketched out) and explanation to follow.  i may be too tired right now to type it out but it’s coming.

also to come: tomorrow i want to unveil my plan.  i think i’ve finally become able to put my idea into words.  i am more motivated than ever to make it happen.

i also would like to mention that sunday, monday and yesterday afternoon i was in a lot of pain with my stomach.  one phone call to Nicole (my blog about Mayan Massage) and she fit me right in yesterday afternoon.  I had such an amazing experience there with her.  my body felt so much better after i left her and today i woke up without that all too familiar pain in my stomach, side, and back.  she is such a pro and a true healer, and i am really working so hard on trying to maintain some strength and balance in my body. i am so grateful to have found my “healers” as i like to call them.  yoga, acupuncture, and the massage have helped tremendously in my quality of life.  thank you Nicole.

until tomorrow..

sweet dreams of bright sparkling hearts

Long day. But a great day!

Good news!  There is slight movement in the back wall of my heart!  A part of my heart that has scar tissue and that we have not seen move in months and months.  Nothing, and now… something… hope!!!!!!  I will explain more soon but this is amazing amazing news.  Like, amazing. I am so happy.  I was so happy today I cried when I left the doctor’s office.  I have never ever cried from happiness before and really never understood the idea of that. But I got it today.

More to come.

Here I am. In the waiting room. Today’s the day we look at my heart on the echo machine to see if it has come back at all. Usually all you can see is that one wall, so burdened with scar tissue that it cannot move. But our hope is that with time and the steroids my ticker has found a way to move again! I’m giving the ticker a pep talk! Let’s go you can do it! Please let us see some movement! We know my heart is stable after yesterday’s day of testing and docs at Columbia. Good news. But I want to see movement!!!!

Got home today at 1 pm from the hosp. Longest day ever.