Monthly Archives: November 2009

How do I deal with Chronic Pain?

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Had to cancel acupuncture today.  I usually drag myself there regardless of how I feel because my body responds so positively to each treatment.  I have to be in a lot of pain to cancel last minute, wish I didn’t have to…

Now, to take a pill or to not take a pill and just lie here?  Major decision.

I have many coping mechanisms I use for pain.  I even see a psychiatrist that specializes in pain management for some time now… we work on things I can do instead of taking pain meds or sleep meds.   I’ve equipped myself with many tools that just don’t seem to be working this time around.  I can’t help but wonder why so much pain?  And why now?

 

 

Pain Flare Ups

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On Thanksgiving I sat in a room filled with family, struggling to get through the day.  I was looking forward to spending time with the people I love yet while I was there I couldn’t enjoy much.  That morning I had woken up to major aches and pains all over my body.  No explanation, it was just “there”.  I finally took a Tramadol (painkiller) during dinner which took the edge off the pain but didn’t do much else besides make me shaky.

The thing about being in a public situation when you are dealing with this bone crushing pain is that you become exhausted from trying to just “be”.  Every conversation, every hour is blurred by the piercing distraction of your body.  Needless to say, my Turkey Day was not ideal.  The next day (this past Friday) I was in bed all day.  I took a seriously serious painkiller and surrendered, unable to mentally deal with the pain any longer.  It gets to a point where you just can’t convince yourself anymore.

By the end of the weekend I was excellent!  Walking around all day yesterday, I wanted to take full advantage of my working body.  I got up early and spent the entire day walking walking walking.  Cut to today, and that pain is back.

I write this from bed wondering if there will ever be a time where I don’t go through these ups and downs.  Pain/ no pain.  Energy/ no energy.  Such an erratic way to live.  When I am this desperate I consider going on the Prednisone again (steroids) although most of me believes that no amount of pain is worth the mental anguish those pills bring.  Sure, your body feels better but you are a completely different person –typically of the unpleasant kind.

I feel worn.  Wrecked. Ravaged.  I am using this time in bed to make phone calls to different institutions to find out what they can do for my heart.

It’s a gloomy day in NYC.

 

Stem Cells and Scleroderma

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In light of all this recent talk of open heart surgery I have become absolutely determined to find an adult stem cell treatment for my heart. My idea is to wait out the surgery for as long as I can and hope hope hope that there is a stem cell option to repair my scarred heart.

The idea is to treat the underlying problem if we could, rather than going in and sewing up a valve to repair it (even though the wall to which this valve is attached to is still thick and stiff with scar tissue). Repairing the valve is not going to fix my heart.  I see it as a band aid.  A very serious terrifying surgery for a band aid.

Stem cells on the other hand have the possibility to truly heal my heart.  They create NEW tissue which could mean a potential for fading out the scar tissue that covers 70% of my heart muscle AND fixing the leaky valve in one swoop.  Of course, it’s not as simple as I make it out to be…

For one, any stem cell treatment I’ve come across where they inject the new cells back into the heart has been controversial among my doctors.  I haven’t gotten the green light from anyone to go through with these things.  They tell me the technology is simply “not there yet”.  C’mon technology!  You have to get “there” because I’m so counting on this.

There is a new website dedicated to “educate and spread awareness about the potentials and successes of adult stem cell therapies.”  I’ve been combing through since I came across this site at 9 am.  They are even doing stem cell TRANSPLANTS for patients with Scleroderma!  It can reset your immune system!

I am hopeful.  Extremely hopeful.  Now, if I could just find the right one for me and my ticker.  It’s the one wish I make when I see my birthday on the digital clock, or a blow a loose eyelash from my fingertip, and right before I go to sleep at night and first thing I do when I wake in the morning.  I just want an answer, to feel in control again..  something to DO to help this go away.

http://www.stemcellresearchfacts.org/

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I know in some ways I am getting better. Little by little.  I believe my illness is regressing.  I’ll have to spend some time repairing the disaster area it left behind after it ravaged my body but I’m up for the task.

Whatever I have to do to fix these things, especially my heart, I will do.  Every ounce of me is willing to fix it all and move on to feeling healthy.  To living my life.

I always think of my body when I listen to this song.  It sounds silly but I picture this one a song my body would sing if it could.

Good times for a change
See, the luck I’ve had
Can make a good man
Turn bad

So please please please
Let me, let me, let me
Let me get what I want
This time

Haven’t had a dream in a long time
See, the life I’ve had
Can make a good man bad

So for once in my life
Let me get what I want
Lord knows, it would be the first time
Lord knows, it would be the first time

-The Smiths

Denial?

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As you know, I have been spending a lot of time visiting my doctors the past several weeks in light of the newest heart situation.

I was upset last week when my cardiologist pointed out just how big a deal this leaky valve thing is.  I chose not to dwell on it but the fact that it went from about a .5 in May to a 2+ or 3 now is troubling (4 is severe 4+ is immediate intervention).  It’s no secret I’m scared and until then I never actually truly remotely considered going under the knife.  Now, I’ve introduced it as a possibility in my brain.

Over the past several weeks whenever these docs ask if I have symptoms my answer is no.  “I feel great!” I tell everyone.  But last night I was shocked to realize that maybe I’m not so great… I spend so much time convincing myself that I am “OK” that it hurts to look at myself and realize maybe that’s not so true.  Have I been in DENIAL?

I was with a group, everyone my age, and we decided to walk through the East Village because it was just such an amazing November night.  Golden leaves, purple sky, our electric city .. it was magic.  I was determined to make it to our destination on foot.  I had to stop twice (Every 6 blocks or so) because I was out of breath, weak, and shaking from fatigue.  I looked up at my group and not one of them was so much as breathing heavy.  Both times I would say “guys, I gotta stop” and they did, and they all get it, and they never make me feel bad for it.  But I couldn’t help it…  I felt so weak … so “sick”.  Ugh.

I tried to stay up but the rest of the night I wasn’t myself.  That simple 11 block walk was too much for me!  I was so sad not to mention worn out.  When I got home I lie in bed awake for hours.  I was mourning the days when I didn’t have to think about these things.  When I didn’t even have to THINK about walking.  What do I do now, I thought?  I am 27 what happens in 10 years?

I know I have to slow down and “take it one day at a time” as every single healing book advises,  but right now I’m just sad and really angry that this is happening again.  I want to walk walk walk, and soak in life, soak in delicious autumn nights like the photo I took below.

I will do anything so that can happen for a very long time to come.

Golden

Gary Null serves the NYS assembly

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A big reason which keeps me coming back to write and share my experiences here is to promote self advocacy when it comes to your health or the health of those you love.

When things got bad with my heart I learned quickly that if I didn’t take control of my health I would be in a seriously terrible position.

Videos like the 3 below inspire me because it’s all about knowledge.  We have to be curious, ask questions, and do what YOU intuitively feel is the right choice for YOU.  Doctors’ diagnoses will scare you, you will innately want to take whatever will fix it fastest, but that may not be good for you long term.

I have used the last year to take myself off medications that I feel were doing me more harm than helping.  Many of my doctors disagree with me.  I also made a decision that I will not get a flu shot.   All this time I’ve been working hard to get the toxins OUT why would I inject poison back in?

The below may not be for everyone, but I give homeboy big respect for his passion and calling out the monster industry that is pharmaceuticals.  Courageous.