Monday, February 7, 2011

Plague, pestilence, etc. A life in review...

Yes, I took the weekend off.  I needed it.  Needed to recharge, needed to regroup, needed to start remembering all the stuff I wanted to put into this post.

So, in thinking about "thinky" things, it came to my attention just how crappy my overall health has been for my entire life.  Not by choice, mind you.  I eat as healthy as I can [yes, I still enjoy an occasional twinkie, however...], I'm "active" in that I am not sedentary all the time, I don't smoke, don't really drink, don't do drugs.  My immune system, and my body in general, though had other plans for me.

So...for your reading pleasure [or just to make you feel better about your health in general], here is a list [not as exhaustive as it can be] of all the maladies, diseases, conditions, syndromes that I have had to endure [or at least can remember].

Chicken Pox.  Who hasn't had the chicken pox?  Mine case wasn't remarkable in its severity or duration.  I remember two things about having the chicken pox [I think I was 5 or 6].  1--I remember being taken to my fathers place of employment--which was Elmhurst College--and having my father yell out "if you haven't had chicken pox, stay away!"  I know, not too exciting. 2--Is the more salacious bit.  It was discovered that I had chicken pox because I kept scratching my ass, and scratching my ass, and scratching my ass--it was where the first pox was.  To this day I have a chicken pox scar on my ass from how much I scratched it.

Tonsillitis and Strep Throat.  I group these together because that's what my body decided to do with me.  Whenever I got one, I got the other.  And let me tell you, I had them both all the time when I was a kid.  Every kid gets strep.  Mine was always exacerbated by my stupid tonsils.  My tonsils sucked until they were removed.  I can not tell you how many times I had the deadly combination of strep and tonsillitis.  Too many to count.  Here are three equally fun stories about these diseases:  1--The first time I had tonsillitis, that I can remember, was when I was 5 or 6 [I think--it was a rough time, what can I say?], my tonsil had an abscess in it. YUM!!  It was so bad it ruptured.  Yes.  Ruptured.  I remember going to the kitchen sink and having a hunk of meat come out along with a ton of blood. Yes, just what I know you wanted to read.  2--There was a period of 5 years where I didn't get strep or tonsillitis at all--from the middle of 5th grade all the way to my Junior year of high school.  My doctor had told me that if I had tonsillitis one more time was a kid that they would have to be taken out.  I think that scared my body into health for a while.  3--My body came back at me with a vengeance in high school.  Middle of my Junior year, I got the chills so bad, it looked like I was having convulsions in chemistry class.  My remaining whole tonsil was incredibly swollen.  I went to my doctors office, who promptly looked in my throat, and said, in his heavy Indian accent "Oh my God, I've never seen a tonsil that big before--you have to get this taken care of today!"  Later that same day I went to "Dr. Death" as I call him.  He shot my throat full of lidocaine, then twenty or so shots of Novocaine, then said something akin to "Close your eyes, hold on to something, take a deep breath, because this is going to hurt like nothing you've ever felt."  Was he kidding?  No.  Did I keep my my eyes closed?  NO.  Did I see the scalpel go into my mouth?  YES.  HOLY BALLS THAT SUCKED.  I had my tonsils taken out that summer.  

Some incidental thoughts on the whole tonsil/strep thing.  Since I had my tonsils out, I haven't had strep throat.  I haven't had a sore throat.  Also, while five year olds may recover from tonsillectomies in two days, it took my most of the summer.  After I recovered, I started at Portillos.

Scarlet Fever.  Can you say that you had Scarlet Fever?  No, I don't think so.  Honestly, I don't remember much about the disease.  I remember my parents freaking the hell out that I had it.  I remember my skin being grayish, and grainy--yes, grainy--almost like sand paper.  Anyways, don't remember what happened, but I know that I had it, and you haven't.

Pneumonia.  Wow, this sucked. This was October 2008--yes I remember exactly.  Normally when one gets pneumonia, you get it in one of your four lobes of your lungs.  I had it in both of the lobes of my left lung.  I had a 104 fever for almost week.  I was flat on my ass that entire time.  Coughing, barely able to breathe, I was able to catch up with all my stories for a couple of weeks.  I was prescribed Cipro--which at this point is the only anti-biotic that still does anything for me--three weeks later I was "better."  "Better" means able to stand, which means able to work.  Now, at the time I still had to walk to work [about 2 1/2 miles one way].  Yes, I was hacking, coughing, barely able to breathe, walking.  Yes, this is when I got my car--that very night.

I've had my share of colds, flu, bronchitis, pharangitis, broken bones [several toes, and my right arm--oh that was a fun time!  I fell off my bike, as I was being an idiot, and my friend at the time rolled over my right arm, breaking it in something like five places], and I'm sure a myriad panoply of other maladies.

Which leads us to the 800 pound gorilla in the room--Crohns.  Crohns and all the shit [no pun intended] that goes with it has, regrettably been one of the main things that has dominated  my life for the past 10 or so years.  I have said it before that I would never, in a million years ever wish this damnable disease on anyone, not my worst enemy, not a Republican, nobody.  Here's what I remember about the early years:

First, I must tell you that I am a hypochondriac--a fact which, in concert with all my diseases makes for a very interesting time.  I had stomach pain back in my junior year of college.  I went to the university health center, who didn't know what was going on.  I went to the hospital, stayed overnight.  I was told "gastroenteritis" was the likely culprit.  Now, dear reader, if you are ever told you have "gastroenteritis" please know that it is a catch-all term, like schizophrenia, that means the doctor knows you are sick in the stomach, but doesn't know why.  Due to the hypochondria, I was convinced that I had some manner of cancer [this being amplified by a family friend dying from liver cancer around this time].

The pain went away, life returned to normal for a while.  Fall 2000 I was marching at Western.  After one game I noticed I had what I could only at the time call diaper rash--it was a very warm day.  This diaper rash didn't go away.  I won't get into the gory details here.  However, look up the words "Crohn's and fistula" in google.  You will learn about what was going on. Of course, more freaking out ensued.  I also, at this time, convinced that I was dying, went back to the doctor at Western.  Then convinced me it was an "anal fissure" [never thought you would read those words, did you?].  They gave me some cream, told me to take baths, and sent me on my way.

I was getting my morning orange juice one fall day.  I reached into my pocket to grab my student ID to pay for it, and felt the sharpest pain in my gut I had ever felt--it knocked me to my knees, and took my breath away.  Of course, I just had a friend who had an emergency appendectomy.  Hypochondria kicked in [not unfounded in this case] and I thought to myself "holy shit, my appendix just exploded."  Called 911 from my dorm room [which I pretty much crawled back to] and got taken to the hospital again.  Test.  Test.  Test.  Test.  Still convinced I had cancer too, by the way.

Eventually, a doctor came back and said that I had something called Crohn's disease.  What the hell is that?  I have never heard of it before.  I got a crash course.  Within a couple weeks, it was in full force.  I had chronic abdominal pain, constant diarrhea, and the damned fistulae.  I thought, honestly, I was dying.  Within a week of learning that I had Crohn's, I found 10 other people that had it--funny how that works.

Resources being limited, as they often were at WIU, I was prescribed the following: prednosone, sufonamide, pentasa, and asacol along with a constant dose of Cipro.  There were times that I was taking 20+ pills a day, every day.  The most successful medication was the Pentasa.  It took away the swelling, and most of the pain.  All the other symptoms, though, were still there.  The result was a serious damper on my social life--nothing like constantly being in pain and pooping to aid in socializing on a college campus.

After I graduated from WIU I was living with my mother, working in the place that I work [still wont say the words online!].  I got a bladder infection.  I really, really bad bladder infection--I'll let your imagination run with that one.  The thing is, men don't really get bladder infections.  I did though.  Bladder the size of a grapefruit I did.  Doctor couldn't explain it.  Went back to work.  Finally got health insurance, and found a Gastroenterologist in the fall of 2004.  By this time, I had a constant bladder infection for the better part of four months, was in constant pain, and had lost a ton of weight.  Then I moved to Peoria with Denise and had to start the doctoring process over again.

Boy was I lucky.  Got a new Gastroenterologist.  Got a great one.  Had a colonoscopy less than two months after I came to Peoria.  Was told--oh....you really need surgery.  January 11, 2005--had my first surgery.  Now, Denise can fill you in on all the details that I don't remember.  However, here's what I do remember:  I remember having to get myself on the operating table thinking to myself--how morbid is this?  I remember telling the nurse to tell Denise that I love her.  I remember seeing all the surgical implements--and freaking out.  I remember waking briefly in the recovery area, hearing a man wailing in pain about his arm and telling the recovery nurse that she had better look after the other guy, because he sounded like he was in dire pain.  I remember then waking in my hospital room, and seeing Denise, and my mother, and my father all standing at the foot of the bed, and they all had the same, horrified look on their faces.  I knew something was wrong.  Then I fell asleep.

When I came around, and was fully aware, I was given the news--my "condition" was a lot worse than anyone thought it was.  I had a lot of my small intestines removed [almost half], and about a third of my colon [which took care of that appendix of mine....], and I now had a new friend--a bag.  Officially a illeostomy bag--everyone would think of it as a colostomy bag.  I was taught the ins and outs of the bag, but man, I was crushed.  The bag was temporary for sure, but, man o man--when you get a bag, and weren't told about it until it was already done, it does a lot to your psyche.

Get released--and went promptly to my grandmothers for recovery--not the smartest decision ever made.  Anyways, grandmamas house--ate, and ate, and ate.  Eventually got "comfortable" with the bag--enough that I could at least function.  Went back to Peoria to further recover.

Second surgery--March 14, 2005.  Bag removed.

March 28--spiked a 104+ fever.  Tons of pain.  Emergency room.  Doctors tell me I have a perforation, was septic.  I of course, don't want another surgery, don't want another bag.  Doctor looks at me and says "if you don't have this surgery you will die."  First time I had heard those words, I assure you.  Sobering.  Very sobering--and not the last time, either.  Anyways...third surgery went a lot better.  By this time, I had become familiar to the nurses on the surgical floor of the hospital, and I was used to the surgical pain [plus, pain pumps=good].  Went home, recovered.  Watched a lot of TV, a lot of cooking shows.

Fast forward to January of 2007.  I had been on various medications, trying to find the right one when I started to lose weight again--oh yeah, I forgot to tell you...summer of 2004 I weighed 220-ish.  January 11, 2005 I was at 145--that's what Crohn's unchecked does. Back to 2007...was down to 160, getting worried. Went to a specialist who told me, after a slew of blood work, that I was horrifically malnurished and essentially had 0 vitamin B-12 in my body.  Now, I get B-12 injections along with all the medication.  Ugh.

September 2007.  Meds aren't helping anymore.  Move to Remicade, which I had been avoiding due to the fact it is administered intravenously.  Miracle.  That's all I can call it.  I've been on the meds now for 3 1/2 years.  I am finally functional [mostly] and able to do and eat most of the things I had before all of this.  I put back on weight--which is good--I am actually supposed to be slightly fat, according to the gastroenterologist.

The other main side effect of Crohn's is my arthritis.  I have it in both knees, my lower back slightly, and my hips.  YAY.

Lessons learned from Crohn's:
1--It sucks, a lot.  If you don't know about it, I suggest reading up: www.ccfa.org for more info.
2--First thing I do when I walk into a new place: find the restroom.
3--I have no modesty anymore about "bathroom stuff"  if I have to go, I go.  No matter where.
4--Denise is a freaking saint--she has put up with all of this for many, many years.  Bless her.
5--I don't make fun of anyone with a bag anymore [I used to make jokes about it].

As I said before, the list isn't exhaustive.  I'm sure I've left some things out [do you really want to hear about my insomnia?  I can always come up with a post about that if you want....].  The things that I've listed are just the "biggies" as it were.

Comments?  Questions?  Let me know!
Until Later.

E

2 comments:

  1. First, love you Erich. I've had painful things happen like a perianal abscess and a perineural cyst on my tailbone. But the abscess was a one time thing, and the cyst eventually took care of itself after several flare ups. Each was painful enough to bring on altered states of consciousness.

    I think this all just gives me a small glimpse of what you have gone though and a great respect for the courage you must have to cope.

    They say "laugh and the world laughs with you; cry, and you cry alone". Just makes us more appreciative of those who are there for us when the crying time comes.

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  2. You are 100% correct Bob. Although the trials and tribulations have really sucked, I have gained a lot of respect for a lot of people who were there for me.

    Thanks for the love Bob!

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