Monthly Archives: January 2010

I am two people

Posted on by
Reply

Yesterday i felt so amazing.  Tons of energy, no pain, no achy muscles… I did as much as I possibly could in one day.  I did not want it to end.  It was magical! To feel able-bodied, wow.

I’ll never understand how I could experience a day like yesterday and then wake up like this today.  My head feels like it is filled with a thick fog, like all I can do is stare.  I feel exhausted, as if I had an intense workout for hours.  Muscles ache, and I can’t do much else than sit on the couch.

I’ve given up trying to make sense of this because I’ll never find it.  Guess I have to just sit back and let it pass.  I have no energy to do otherwise.

Rheumatologist today

Posted on by
Reply

Off to an appointment with my new Rheumatologist Dr. B.

There is a controversial decision that I am about to make and hopefully today will help.  So far, I’ve spoken to all of my trusted doctors and healers and they seem to be 50/50 on the subject of using antibiotics (minocycline) as a cure/ control for Scleroderma and autoimmune diseases.

The theory is best explained here Roadback.org

It is an interesting theory and out of my desperation I will try anything to get rid of illness and disease in my body.  I am not sure what my gut feeling says anymore, it’s a battle between knowing there probably isn’t a quick fix to anything health related and wanting to be better… taking a pill and BAM it’s gone!  I want to believe that but after speaking with my Osteopath yesterday he made a good case to stay away from months of antibiotic therapy.

I’m so confused.  It’s so hard to make decisions when there are no answers.  I want to be patient as Dr. V (my Osteopath) advised me yesterday.  He says he believes I will make a full recovery, that I’m in the process of doing so,  but it’s up to my body to decide how long this will take.  Patience is hard however when you feel stuck and you’re wondering when this will end.  I always like to think I’ve tried everything I possibly can…

At this moment I am leaning away from the antibiotics.  Something about it doesn’t seem to be “right” for me.

Prepping for a big doctor appointment tomorrow

Posted on by
Reply

I tremble
They’re gonna eat me alive
If I stumble
They’re gonna eat me alive

Can you hear my heart beating like a hammer?
Beating like a hammer?
Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft
Tough to be tender

Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps beating like a hammer
Beating like a hammer

If you’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart still beats…
Beating like a hammer
Beating like a hammer

Help, I’m alive, my heart keeps beating like a hammer
Hard to be soft
Tough to be tender

Come take my pulse, the pace is on a runaway train
Help, I’m alive, my heart keeps
Beating like a hammer
Beating like a hammer

If you’re still alive
My regrets are few
If my life is mine
What shouldn’t I do?
I get wherever I’m going
I get whatever I need
While my blood’s still flowing
And my heart still beats…
Beating like a hammer
Beating like a hammer
Beating like a hammer
Beating like a hammer

Help, I’m alive, my heart keeps beating like a hammer

Gall Bladder Flush – Getting rid of all the junk

Posted on by
Reply

Remember when I got so sick a little over one week ago?  Well, what I thought was a stomach virus turns out to be a Gall Bladder attack.

I didn’t even know what the gall bladder was or its function but apparently mine was angry.  I wasn’t exaggerating when I said I was getting sick for hours.  So gross.

After this diagnosis I went to a book that I use for almost everything.  It’s called Healing With Whole Foods by Paul Pitchford.  It based on Chinese medicine and it offers remedies for everything through certain foods.  I love it.  I feel so in control when I open that book and find so many ways to help it.

Anyway, I am going to do a gall bladder flush suggested in the book.  I have to wait to do this on a day I will be home the entire time but lucky you, I will write all about it.

For some reason, I did feel good when I read this part in the book:

Most chronically ill people need gall bladder cleansing before recovery is complete; this includes individuals who regularly experience stress.

It made me feel like I’m towards the end of this.  Like there may be a light at the end of this chronically ill tunnel…

29 Gifts

Posted on by
1

To counteract my gloomy post of this morning I wanted to share this.

This book was sent to me recently, and I read it within one day.  It really spoke to me because I honestly could’ve written it.  There were many similarities between the author and myself.  It’s a story of a woman’s struggle with her diagnosis of MS and the amazing way she has changed her life.

The book is based on a prescription the author’s spiritual advisor gave to her one day when she called in pain and desperation looking for help.  It was to give 29 gifts in 29 days.  The rest is a beautiful story of healing and self-empowerment.

Visit the website for the book here.  You’ll be so happy you did.

Thank you to the lovely Stephanie Jeanne

I’m starting my 29 Days of Giving next week.  This week is filled with doctor appointments so I’ve decided to begin my giving at a time when my brain is usually spinning out of control … after seeing tons of docs.  I can’t wait to start. I really love giving gifts.

Lauren’s List of Incredible Sadness

Posted on by
10

Hard day today.  I’m posting this tomorrow (Tuesday) morning in hopes that as you read this I am better and it has passed –like a bad dream.

I’m taking a risk here, this is super personal stuff (even more personal than talking about colonics).

Some days it all catches up to me.  Some days I feel so sad for everything that has happened and I can cry the whole day long. Today was one of those days.

I spend so much time moving forward in battle mode and pushing through the obstacles I forget to take the time to be sad.  I stay positive because I convince myself it will all be ok, and I believe it will, but what about the last two years of my life?  I find myself mourning the time lost to illness… I didn’t choose any of this and it all happened so fast that in many ways my brain and body are still trying to be the new me; the me that was shaped out of trauma and illness…

Lauren’s list of incredible sadness (it helps to get it out):

1. What about all the things I’ve had to give up?

2. The sacrifices I’ve been forced to make?

3. What am I possibly gaining from this?

4. What did I ever do to deserve this?

5. How do you get your youth back?

6. Am I making the right decisions?

7.  So many relationships that crumbled because of this…

8.  I can’t remember the last time I laughed so hard I cried.

9.  I can’t remember the last time I truly had fun without health concerns drowning out the moment in the back of my brain.

10. When will these difficult times end?

The sadness turns to frustration and anger… I am doing everything RIGHT!  I am doing it all, I am eating things I despise, I am going to doctors and specialists, I stay home and rest when I’d rather be working all day and going to parties all night in ridiculously high heeled boots.

Lauren’s list of incredible anger (also helps to get it out):

1. It’s hard every single time I say no to an invite out with friends or family (what if they forget about me)?

2. Where did the last two years go?

3. Holy shit, I’ve turned into a senior citizen.

4. The medicines have caused me more harm than helped me.

5. Most* doctors are not to be trusted.

6. You are treated horribly in just about every NYC hospital.

7.  You are treated like you are going to break (physically and mentally) by everyone around you.  You start to feel crazy.

8. Autoimmune disease is no explanation for what I experience.  You can’t put a name on this nonsense.

9.  No one will ever TRULY understand what I go through.  It’s lonely.

10. The fear that it will progress… I feel so helpless.

Ah, it feels good to write it all here. I may regret writing this but I might also help some people out.  People who may be going through something similar.  You aren’t alone if that’s you.

Now I’ll go to bed and I’ll think of the people I love and I’ll get up tomorrow and get back into the fight.

Little LDV.  So innocent and carefree.  How do I get it back?

2010

Posted on by
Reply

New year new start.

I attempt to live every day with the thought that I’m starting over, but somehow the changing of a year makes it easier for all of us to embrace this idea of “starting with a clean slate”.

I have much to be thankful for in 2009 but I am relieved to know it’s behind me now.  Lessons have been learned, tough experiences have brought me greater understanding, but that doesn’t mean I want to stay with them forever.  Moving on is the best feeling.  It’s the freedom to live, to change, and to continue getting healthier.  The possibilities are endless!

In 2008 I was admitted to the hospital 13 times.  In 2009 that number went down to 3!  This year…  it will be zero.

I don’t like making resolutions.  I do have one goal in mind though, and that’s to heal my heart.  Get rid of the scar tissue.  I’ve decided to wait on making a decision about open heart surgery and allow the docs to watch my leaky valve closely without intervention at this time.  I am giving myself the opportunity to change my body on my own and I know it sounds crazy — but I also know I can do it.  Our bodies are so much more magical than we give them credit for.

Thank you all for helping me get here and sticking with me as I heal myself.