Tuesday, April 25, 2017

Feeling Guilty For Feeling Good

The internets has allowed me to meet and become acquainted with some really wonderful people.  

This world is mad, truly mad.  If you don't believe the globe is riddled with wing-nuts and loose cannons, turn on your news and give it just a 1/2 hour of your attention.  If you can stand it that long.  Personally, I can't.  I stopped watching "network" news years ago, at least 25 years.  I think I became so disenchanted with the networks during the first Clinton debacle and whitewater and all that crap, and the way the networks covered up so much wrong doing, I lost respect for network news and stopped watching.  If they are not going to be honest, what's the point?  Doesn't matter which network you watch, they all LIE.  There are those that lie a lot better and more often than the others, but still.  When you are out for ratings, anything goes.  No, if I want news, I go to places on the net that are not competing for ratings.  Their only goal is to state the facts, tell the news, and be done with it.  No arguing and yelling over each other so that NOTHING can be heard or understood, no arm-chair warrioring.  Just the news.  And those news outlets are out there.  They are few, but they are there.  Anywho-

Back to my original subject.  I have met some really great people through the net.  People who have what I have.  And I have to say, in comparison, I am so much better off health wise, than so many.  Even though I'm considered "terminal".  My heart cries for some of my friends who suffer greatly (and that is putting it mildly).  I read their blogs and watch their video's, and I am filled with compassion with what they suffer, especially the "non-responders".  God bless all of you!

Before my ILD diagnosis (interstitial lung disease aka rheumatoid lung), my RA was very well controlled, well managed.  I responded immediately to the Remicade (the first biologic I was on) and MTX.  And with the exception of the mind-numbing daily fatigue, and ankles that became trashed pretty quickly, I would say my RA was "mild".  I limped a bit, I fell down a lot (still do :)), I was exhausted 2 hours before the work day ended.  But I wasn't nearly as bad as some.  And even now, while being "terminal" I can still say the same thing.  Incredible.  This disease is just incredibly unpredictable, and extreamly different case by case.  Let me try and get to my point here (there's a point?).

I went from "well controlled, mild case" to "average life expectancy 2.5 to 4 years, depending on how fast you progress and everybody is different" in a matter of weeks.   Even now, when I KNOW I'm on the way out because I can feel my lungs dying and losing ground, more every month it seems.  But yet, when I compare what I go through on a daily basis, to some of my friends (who don't even have RA lung, nor any organ involvement), I can't help but wonder....why.  How very strange.  Sometimes, I feel guilty for feeling good, for being "in better shape" than some of my RA friends.  This is truly a very unfair disease.  I have my days.  There are those times when this monster lashes out at me, and puts me on my arss for weeks.  Its cracked bones.  The steroids have completely changed how I look and distorted my face and my body (as if the RA wasn't enough).  Sometimes, when I breath out, my lungs "whistle" and sound like a mewing cat.  Seriously, a mewing cat.  I don't "feel well" a lot of the time.  I have a chronic effusion on the right lung that "twitters" when I cough.  But for the most part, I'm still managing.  I still feel guilty sometimes, for feeling good.  I want all my RA friends to feel good, to be well managed, controlled, remission, any of the above!  If only it were in my power to make that happen for them.  I would.  And those stupid tv adverts for our meds make RA sound like the flu.  It makes me want to march right into the CEO's office at Big Name Pharmaceutical and shove his/her face into the lives/blogs, videos of the people who suffer mercilessly in the body and then say "NOW will you stop acting like this is a head cold and get serious with some research for a cure??"  I've even had people tell me, after I've explained to them what RA truly is "wow, I never knew it was like that, the commercials on tv make it sound a lot less "serious"".  Yes.  And therein lies a huge problem.  I honestly believe that is the biggest reason why RA only gets 1/12 of the research funding of Lupus, much less than other more rare diseases that have the same mortality rate as RA.  Hey, its just another form of arthritis, right?  yeah, tell that to somebody who's been in full-body flare for two months and have to have help cleaning their own bottom.

Well, I believe I have rambled on long enough now.  My RA buddies....you guys rock!  Because you kick ass and take names every day.  You are the strongest people I know.  I love you all :)

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