Monthly Archives: November 2009

My own worst enemy sometimes

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I haven’t been feeling well.  There is definitely a flare up going on.  Unspecific Inflammation as the docs call it.  It means I have inflammation in my body, they aren’t sure why or where, and it makes everything painful.  The rain exacerbates it to boot.

When it’s really bad I consider going back on the ROIDS but then I remember how off-the-rails-insane I was on those meds and I reel it back in.  I just have to deal.

All I want is comfort, relaxation.  I found it in blueberry pancakes today.  I do not eat much sugar anymore but I just wanted something familiar and warm.  Something that reminded me of being a kid, feeling great with lots of energy.

Now I sit here blaming myself for my pain and feeling incredibly guilty for eating sugar.  Sugar directly causes inflammation.  I know this.  So why do I still go for it?

My head is so messed up from everything.  I enjoyed them going down but the guilt is too much to sit with.  This is crazy right?  Doesn’t make sense.  But it’s my life right now.

Fluffy blueberry pancakes with maple butter

Fluffy blueberry pancakes with maple butter

Overload

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Cardiologist yesterday.  This Doc is old school.  He’s at the top of my list when it comes to doctors I trust.  We looked at my heart over the echo cardiogram machine.  We checked out that leaky creaky valve.  It is, in fact leaking much more than it did at the beginning of the summer (this Doc had noticed it then, but it was so insignificant he didn’t mention it or worry about it).  He said it was moderate, giving it a 2+ to 3 (4 or 4+ is severe).

He did mention that the leak will, over time, put extra stress on my left ventricle (bad) causing it to dilate and become stretched out and damaged (very bad).  At that point there is nothing that can be done to preserve the heart.  Then we’re talking transplant.
So, the idea is to fix the valve (first they have to determine if they will be able to even do so), and keep the heart intact and pumping efficiently.  The only way to fix it according to the docs I trust?  Open heart surgery.

I am still wishing it all away.  Wishing that my valve magically goes back to closing up tight when it contracts.  Wishing I didn’t have to say or type the words “open heart surgery.”

I have a couple of plans up my sleeve and there are a few more tests to be done before any decisions are made.  My doc said yesterday this isn’t an easy decision.  Huge understatement there.

I can’t help but to be upset over the news.  Upset that my Ticker is going through such a tough time in there.   Upset that my life has been doctors doctors tests doctors for the past 5 weeks.  I need OUT for awhile.  It’s messing with my head.

Tonight I convince myself, mind and body, that I am perfectly healthy and my heart is whole, strong and untouched. If I truly believe it my body has to as well.  Right?

Disturbing

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This is sick.

I thought my imagination was running crazy wild when I first thought about this. It sounds like a movie. I have actually been paranoid about this in the past. Ugh, gives me the chills

http://blogs.discovermagazine.com/80beats/2009/11/11/how-to-prevent-heart-hackers-from-turning-off-pacemakers/

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I just made a last minute appointment to go and see my Cardiologist tomorrow afternoon (I have two by the way, a heart failure specialist and a regular old school cardio).  He squeezed me in and I feel good knowing he will check out the situation tomorrow.

The thing is, I’ve been having chest pains for a week now.  I can never ever tell if they are muscular (from the kicker), or “real” chest pains therefore panicking just because of what they could mean.  I decided to go and clear my head, make sure nothing major is happening.  My stress level is through the roof these days and this is not helping at all!

On top of the chest pains I have been naush for a week and way more tired than usual (which is a whole lot).  The nausea concerns me because it’s overwhelming.  It’s everywhere… down to my feet and up through my head.  I get so scared because when my heart failure was at its worst the nausea felt similar to this.  Acupuncture didn’t help out so much today.

I can’t wait to see my doc to be honest.  I need someone to tell me things are ok. I just need to hear it.  I have not relaxed or truly slept in a week or so.  I feel wrecky.

Gonna stay inside and make myself as comfy as possible tonight.

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I woke up feeling so great today (rare).  This weather (also rare) definitely has something to do with it.

Of course, something is bothering me.  Why is it that I went for a test for my esophagus almost two weeks ago and not one of my doctors have contacted me since?  I have left messages for both my Cardiologist and Rheumatologist and nothing.  The truth, and the impression I got from all of my doctors is that this is time sensitive.  We need the results to move forward with other testing to assess my leaky valve.  So why is everyone sleeping on this?

When this happens I feel so unprotected.  Yes, we all have to advocate for ourselves but at what point are the docs negligent?  I don’t feel safe, and I certainly do not think any of them truly have a grasp of my illness nevermind think of it enough to take control or even create a plan!  Frustrated!

So the search for an efficient Rheumatologist continues.  Is there one out there?  Who can ease my anxiety a bit?  Grrrr

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I’m sure it comes as no surprise that I did not vibe with that new Rheumatologist last Friday.  I don’t even care to get into specifics because I will get annoyed all over again but there it was once again… the TRUTH.  NOBODY KNOWS HOW TO MANAGE OR CURE MY ILLNESS.  It completely intimidates anyone I sit down with the first time I go through my list of issues.  It’s not only tiring to tell my story from the beginning but it also makes me sad.  Rehashing it all is painful.

I’ve been pretty down since then.  I try not to dwell on these things but I can’t tip too far in the other direction either.  Either extreme doesn’t work out so well for me.  I just keep telling myself to live my truth, make my own life and drown out the docs and test results.

One thing is for sure, this month has brought one hard piece of information to digest after the other.  I am so ready for things to be smooth and groovy.  Maybe it will start today…

Pain pain pain

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Slept two hours at most last night. Having a pain flare up, for what reason I do not know. Some days I cannot deal with the mental battle of trying to manage my pain with excercises, visualizations, etc.. It’s been a long time since I’ve done this but today I just couldn’t deal with these intense aches and pains on top of no sleep so I just took my heavy pain meds. I hate to cave but it was very necessary. I hope it works very soon.