Saturday, November 17, 2012

Resurrecting the dead blog

Obviously I have abandoned this blog to the internet graveyard.  I've been using Facebook to share all the menial (and not-so-menial) news of my life.  But lately, some things have happened that I don't really want to share in that world, so for those of you that ever visit this place, you get the privilege of reading top-secret information!  Just kidding, it's not really top-secret.  It's kind of middle-secret though.

For over a year now I have been having a Crohn's flare-up.  I've had a couple minor medical procedures, tried three new drugs (two of which are super hard-core gene therapy drugs, one of which I am allergic to and gave cause to visit the emergency room), and seen all three of my doctors a dozen times this year... to no avail.  While my symptoms come and go (pain being the most bothersome), I seem to continue to slowly get worse.  I am on two immunosuppressants and there is nothing else my GI doc can do but send me to my surgeon for a consult.  So, I will get more news on Tuesday, although we both predict the answer will be "Sorry, you will just have to live with this indefinitely."  I've been visiting forums and some people report living with it for years and years... one person waited seven years before they finally healed.  Needless to say, this is causing a considerable amount of stress and sadness.  Sometimes I just have "feeling sorry for myself" days.  When that happens I usually feel super guilty, which then makes me feel worse, so I've been working on allowing myself one of those every now and then.  I talked to my GI doc about that a few months ago... I told him, "Sometimes I feel really bad about feeling sorry for myself, because I really am lucky, most people with Crohn's go through much worse."  He looked at me quizzically and said, "I don't think you realize how much you deal with; you've just gotten used to it.  Most people with Crohn's don't have it worse.  You're actually a pretty tough case, and your body doesn't respond to treatment.  It's okay to feel sorry for yourself, you've earned it."  Then I started to cry.  Throughout the last 11 years, I've read tons of blogs, essays, forums, and articles written by people with this disease and every time I read them I've thought, "Wow, at least I don't have to deal with that!  Needing to know every single clean public restroom within 30 miles of my house?  Having my whole day planned out in relation to my eating/medicine/disease schedule?  Unable to eat solid food sometimes?  Having three doctors that regularly consult each other?  Thank goodness that's not my life."  Until, you know, it was, and I just didn't realize it.  I guess that's good, though... right?  That I didn't notice the temperature of the water until I was in the pool all the way?

Oh and also my job pretty much sucks this year.  I will be looking for other employment in the spring, unless another position opens up in the district.  Sad times.

3 comments:

Amber said...

Life is not always easy. Please know that there are folks out there thinking about you with love and hope for your health and happiness. Not to mention some skunks.

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Martin Garrix said...

Nice article