Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

-Natalie Merchant “Wonder”

How appropriate.

It’s been happening a lot more than usual lately, and it’s been happening a whole lot in the past couple of days: it’s this thing where I have to stop and actually make sure what’s happening is really happening.  To make sure it’s real, this is all real.  “Really?”

This “reality check” of sorts started when the whole Ticker story started.  I just couldn’t believe how sick I was.  And then it would happen every so often since then.  But lately, wow.  It’s an eerie feeling, like I’m watching someone play me in a movie and I am not even here anymore.  I think this is how I got through the really tough times, when I couldn’t even move and I was scared I might die, I detatched — but now that my head is syncing up with my body once again there is opportunity for a lot of feelings to rear their head.

I am overwhelmed.  I am so overwhelmed I just don’t know what to do or say anymore.  I find myself not knowing how to even “stand” when I feel like this.  I just pace and can’t sit still.  I am also exhausted.  I am feeling completely entirely exhausted. Burnt. Spent. Dunzo.

Staring at the calendar today, I avoid letting it sink in.  I am dreading next week.  October 16th, just staring at me.  It was one year ago on that exact day my life completely changed.   I went to an ER thinking I had bronchitis and was told my heart was only pumping at 15%!  My old life came to an end and I started a new one.  I was reborn in January once my Ticker started going again, and it’s been quite a ride. Yes, I like to keep it positive here because well, generally I am.  I truly know I will be “ok”… I have to be… but I’m not gonna lie: a year into this and the journey is wearing on me. In a big way.   There is just SO MUCH EVERY SINGLE DAY. It’s so much.  There is still so much to be done as well.  I have only just gotten started on solving my mystery, on becoming a whole healthy person again.  I went to a doc today who I believe will help me.  She is East meets West thinking, an Integrative Medicine doc who knows her shit.  I trust her, and she agrees, there is a lot to be done.  Dr. Y is one of the few people in Manhattan who specializes in treating patients with stomach problems like mine.  I am going to have to be very patient because it will take time, but I hope we can get this back on track.  My body (especially my poor tummy) is so wrecked.  I feel sad for it.  It’s trying so hard and it’s been damaged by medicine, chemicals, trauma.  I almost cried leaving the office today.  Actually, I cried in the cab.  It made me wonder how many times cabbies see random crying in the backs of their cabs.  Or even people sobbing into phones (I’ve done that before, too).

There is just so MUCH.  I’m gonna go scream into a pillow now.

I haven’t felt compelled to write since seeing Dr. D because well, there really isn’t much to write.  Same old.  No plan really, wait wait wait. Lower the steroids, we’ll play around with them if I feel crummy.  I am down to 20 mg now, less than half of when I started.  I have been pretty down.  Although, one good thing:  I did get some major painkillers to have “in case of emergency” if one of those attacks should ever come on again (although I wish every single day that it never ever does).  It is comforting to know I will have these as a tool to use instead of going to an ER.  That is the best news in a bad situation.  When I brought the prescription to be filled at the pharmacy their eyes widened “Whoa we don’t have this here! We have to order it!”  Definitely, order that right up, thank you very much.

Since Monday, it has taken me two hours each day to get out of bed in the mornings. It’s been pretty awesome.  I lay there, moving all of my joints around, stretching like a cat.  I drink tea to stay warm and by the time I actually physically get up I am exhausted.  I am not sure what the culprit is this time, I am still trying to figure it out.  I am also trying to figure out why my left ear hurts ALL THE TIME.  I seriously get so paranoid, what is it THIS time?  Dr. D looked in there on Monday and says it’s all good.

Acupuncture really helped me today.  My acupuncturist is truly amazing.  I almost cancelled, but forced myself to go.  I also forced myself to walk there.  It is a ten minute walk through my neighborhood.  Straight pavement, city blocks although I felt like I was hiking uphill the entire time.  My legs were like lead, I was totally winded and just wanted to crawl up in a ball and/or vom dot com.  I almost hailed a cab but would be too embarrassed to tell the cabbie I am going only 7 blocks south!  I am so glad I went, I left there hungry and feeling a lot “lighter” than before.  My legs weren’t quite as heavy on the walk home and for the first time in a few days I was hopeful that this “funk” is ending.  My body is super responsive to acupuncture and I am so glad to have finally found things in my life that bring relief!

Tomorrow’s schedule:  I am going to see a homeopathic doctor who is going to help with my stomach problems.  We are going to get it back on track! I want to eat properly again!  It’s going to be a lot of work, and it will take patience, but word on the street is she is the woman to see.

Off to Columbia to see the Rheumatologist, Dr. D.  We are going to talk about the streoid taper and other fun stuff.  I usually leave his office in a bad mood because he is brutally honest and doesn’t sugar coat things (which I prefer), so I am faced with reality walking down the long hallways of Columbia Presb.  Anyway, I’m already prepared for it so hopefully I won’t let myself get too annoyed that no one in western medicine seems to understand these chronic illlnesses.

This is going to be a good week.  It has to be.  Has to. IT HAS TO BE, PLEASE! PLEASE! PLEASE! Cozy, orange, autumn days.  I am going to eat, and I will feel healthy and strong, and I will not have one of those awful stomach attacks again. Ever.

I’m not big on quotes (especially campy ones about unicorns and butterflies), but this one made me feel better upon reading it today so I decided to share.  Here’s to an easy Monday morning for us all…

“Just when the caterpillar thought the world was over it became a butterfly”

-Proverb

So it’s basically been hell. One of those weeks where evey day I am waking up uncomfortable, in pain, with numb fingers and toes.  My stomach problems have reached new heights where I am just so desperate to be like every other person and be able to sit down and eat a meal without extreme planning and overanalyzing, frustration, and then fear as to what will happen once it goes down the hatch.  I want to just be able to eat.  EAT!  A simple human activity.

I did not sleep last night or the night before.  Last night was especially horrible considering I was already exhausted and I was just so uncomfortable.  I just lie there, unable to even cry, I felt tortured… I cannot find one place or position to be comfortable in my own body, in my own skin.  I must have changed positions a million times, got up and paced, tried to do yoga, read a magazine… nothing helps.  All it does is make me increasingly angry.  So so angry.

I am trying everything I know.  I have doctors and doctors and alternative healers and acupunturists and massage therapists and yet I still have so much to do to get my stomach back.  It’s so sad to think that these problems are primarily caused by all of the medicines I take daily.  Years and years of these chemicals are just compounded in there and have wreaked havoc on my sensitive intestines.  The irony is laughable … you take something to help one thing and complete harm another.  I have to basically undo 7 years of damage to my colon:  I have to start a planned assault on all of the out-of-control bacteria and bad guys that have made home in my stomach …There is no balance down there.  It’s not going to be fast or easy and I just pray every day that I do not get another one of those attacks.  I am so traumatized every time they happen… it’s the most awful thing I have ever experienced.  I am scared every single time that I eat it will trigger one. I can deal with a lot of the day to day stuff but when it comes to constantly being naush and in pain I turn into a very cranky girl.  There is just no relief.  I walk around my apartment with my hot water bottle under my sweatshirt at all times.  I hug it all day long.

Today I couldn’t take it anymore so I took two painkillers this morning.  Should be an interesting day…  it is such a last resort for me to take these things.

Good news is I made some progress on the Autoimmune website last night.  I have solid ideas and the structure of the site is coming along nicely.  It is such an exciting project for me.  I feel so passionately about it.  It’s going to be amazing!   I think I’ve found a name but I am not going to say yet.. I have to check on a couple of things first.

Please enjoy a meal for me today.  Enjoy every single bite and send it my way!  I used to LOVE eating, enjoying food.  Now  it’s become a dreadful part of my day.  Ugh.

-Liquid Diet Lauren