Monthly Archives: July 2009

How will I know?

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There has been a lot going on but I find I’ve avoided writing about it because I don’t really know where to start.  There’s always just so much information. Too much.

I can start with the story of a doctor in UCLA.  A Rheumatologist at the top of his game that I have been urged by several people to go and see for some time now.   I haven’t wanted to go because in the past I have been let down by so many doctors  —the ones who are said to be “The Best” in particular are always the most devastating.

Although I presently have a Rheumatologist at Columbia, I have never been satisfied.  Not a single doctor has been able to provide me with a proactive plan… ideas for slowing down the progression of the disease and of course, my ultimate hope, curing it (which nobody can claim to do and I understand).

So, when my mom knew she would be on the West Coast she asked if it would be alright if she went to a consultation representing me.  I was absolutely fine, and we gathered every test, all lab work, I created a history and signed a paper it would be OK for Doc to speak with her.

After the appointment yesterday my mom sounded overwhelmed on the phone. Good news:  she wasn’t disappointed. She had a list of my concerns and how he would address each one if I were under his care.  Bad news:  one doctor is FOREVER contradicting the last one and this one’s plan involves nothing but medication medication medication.  Lots of it. Many of which are super toxic.

I have a whole lot to consider and carefully think about.  At some point I will list all of my potential options but not just yet, I am still processing.

At the end of our phone call mom sounded exhausted and sad.  She said “You know, it’s just so much.  Seeing a doctor and going over everything makes it all so real again.” 
She had gotten a taste of what I’ve been exposed to for the past year and a half.  Every time I leave a doctor office I want to cry just because.  Just because I am so overwhelmed and I don’t even think my brain can process so much at one time anymore.

The hardest part?  Making decisions.  This is my life.  I have learned I can only go from my gut but that doesn’t make this any easier.  I am nervous that one choice could make me sicker but who will ever know?

I am taking a lot of time to think this through.

I wish so badly someone could tell me exactly what  will happen next.   I really would love to hear that it’s done.  All of it, and my body will not be harmed by this silent mean illness any longer.

I get overwhelmed with sadness when I look at these pictures. I usually keep them in a place where I can’t get to them easily. I’ve been wanting to scan them into my computer so this is my project tonight. Looking at this baby, my stomach turns.  So happy, so innocent, how could she ever know what that little body would go through one day? I study my fingers, my toes, every part of my little body.  I look at it and I want it all back.  I want that innocence, I want my body to be pure and free of trauma and all of the awful medications and shock and it’s been through. I stare at my chest and try to imagine this big metal box that is there today.  Wow. I feel scared for the little girl in the pictures.  How could she have ever prepared for all of this stuff that’s gone on?  I just want to hug her and tell her everything will be alright. Although it is quite sad for me, the pictures also remind me to love each and every day.  To soak in the little things and the smells and the sounds and the people around you…  That smurf bucket and shovel probably made my MONTH when I got it!  Not a thing to worry about. I want to be that like that little girl again.  I try every day.

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I get overwhelmed with sadness when I look at these pictures.

I usually keep them in a place where I can’t get to them easily. I’ve been wanting to scan them into my computer so this is my project tonight.

Looking at this baby, my stomach turns.  So happy, so innocent, how could she ever know what that little body would go through one day?

I study my fingers, my toes, every part of my little body.  I look at it and I want it all back.  I want that innocence, I want my body to be pure and free of trauma and all of the awful medications and shock and it’s been through. I stare at my chest and try to imagine this big metal box that is there today.  Wow.

I feel scared for the little girl in the pictures.  How could she have ever prepared for all of this stuff that’s gone on?  I just want to hug her and tell her everything will be alright.

Although it is quite sad for me, the pictures also remind me to love each and every day.  To soak in the little things and the smells and the sounds and the people around you…  That smurf bucket and shovel probably made my MONTH when I got it!  Not a thing to worry about.

I want to be that like that little girl again.  I try every day.

Smiles

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Things have been generally quiet so I like to take advantage when I am feeling good.

I’ve been walking so much.  It is pure freedom.  Having energy and feeling confident that I am healthy is like this great present that I’ve been getting over and over.

Of course, there are tons of things that still worry my brain but I try to just chill and soak in the days that I feel good.

Last year at this time I still wouldn’t leave the house on my own.  I was so weak and mostly scared.  It feels so good to examine how far I’ve come in the past year.

I know what love feels like. That is one thing I have found. That is one thing that is much clearer because of Fibromyalgia. Because once you experience real pain you recognize the vibration, the feeling of being healthy, happy and loved. If I’m not living from my heart, I get sick. I need to do things that feed my soul, like being with people I love, or playing my guitar, or listening to music.

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I know what love feels like. That is one thing I have found. That is one thing that is much clearer because of Fibromyalgia. Because once you experience real pain you recognize the vibration, the feeling of being healthy, happy and loved. If I’m not living from my heart, I get sick. I need to do things that feed my soul, like being with people I love, or playing my guitar, or listening to music.

A.J. Langer, Fibromyalgia Aware magazine. (via julie911)

Well Said.

Fibromyalgia is another one of these chronic autoimmune diseases that comes and goes, causing a huge amount of pain to the body.