TMI Warning!

 

    Ok, just in case there are those out there that don't know what TMI means, it stands for Too Much Information.  This post will be talking about things you might rather not know about me so here is your chance to click off and go read something more pleasant. So why am I writing it?  I just feel like NOT saying these things is being inauthentic. It's like I'm only talking about the good things and not telling it like it really is.  

    I've been struggling lately because I post things, and everyone says how happy they are that I'm doing so well when I'm really not.  It's not their fault though, because they don't know how I'm really doing because I'm not telling people.  That's because it involves things that are not fun to hear about or talk about for that matter.  Sometimes it's because the things are gross, other time it's because they involve more private or embarrassing areas of the body. In polite society we just don't discuss such things.  The reality is though that my everyday involves a lot of such things and my every day is pretty hard.

    For months now I've been dealing with bizarre abdominal pain.  Initially I attributed it to the catheter from my VP shunt which drains into my abdominal cavity.  I have a shunt that takes cerebrospinal fluid (CSF) from my lateral ventricles in the top middle of my brain out of a small hole in my skull and then through a catheter that runs between my skin and my skull behind my ear, down my neck, over my collar bone, along my sternum, and then over my lowest rib and down into my belly.  Evidently, there are tissues in the abdominal cavity that are specifically designed by God for absorbing liquids, so the doctors decided that's a great place to deposit extra fluids.  So, a couple of months ago I started having these intense pains and I was worried that my appendix was going bad.  I mean, I was doubled over in pain and barely able to breathe.  We went into the neurosurgeon's and they did a shunt xray series that follows the path of the shunt through my body.  It was fascinating because they showed it to us compared to one taken earlier in the month and the catheter tubing looked completely different.  In the first series the tubing was zig zagging all over the place.  It looked as if it had "remembered" it's shaping on the spool and taken a similar course through my body.  The second series that I had done that day was completely different.  The tubing was straight, as though the heat of my body had molded it into the shape it needed to be.  The end of the tubing looped around at the base of my abdomen and ended exactly where the pain was!  The surgeon, however, said there was no way that it could be causing my pain.  Coincidence?  I think not!

    Since then I have developed other abdominal symptoms that kept pointing to other reasons.  At first I had intense bladder pain that made me wonder if it was really a UTI (Urinary Tract Infection). Then I started having horrible gas pain and bloating and I wondered if that was the root cause.  The strangest one, and this really is TMI so skip to the next paragraph, was that my vagina had horrible stabbing pain.  This wasn't all the time, but it was for some part of every day, and not necessarily predictable. It made me feel like if I bent at all, like to sit down, the pain would shoot right through me and kill me.  I'm really not exaggerating, it feels like death.

    So have we figured it out?  Not officially, but we've done enough trial and error that I think I have a pretty good idea of what's going on.  I am what they call a "Highly Sensitive Person."  We are the proverbial canaries in the coal mine.  Things affect me more strongly than the average person and while I might react differently than someone else, it is still very real to me.  I think that my body just freaked out about the tubing in my abdomen and every place with a nerve ending down there is letting me know that things are NOT ok.  This gets triggered when even normal things, like eating and digesting, take place.  I've found that the pain is worse typically at the end of the day, often after dinner.  It's also bad if I need to pee.  Anything that would cause a "sensation" in a normal person will cause horrible, breath taking, stabbing pain in me.  Not. Fun.

    Just for a little more TMI, the IV antibiotics plus four major surgeries sent my digestive system for a loop and my typical hemorrhoids have returned. I DID warn you!  So, having a bowel movement or even just sitting for any length of time is exceedingly uncomfortable. I do have medication for this, but no, it is not a nice little pill I can take, and no, it doesn't help much on the day to day.  

    On top of this, I am SO TIRED. I mean bone-weary can't stand for any length of time, have to take a nap every day tired.  I can't go out and do much because it just exhausts me.  I can't visit with people for long or often, because I get so wiped out.  Just sitting on the couch in my living room and talking with a friend will put me in bed for hours after.  I feel like such a princess, but the reality is I don't have a choice.  I will fall asleep at my desk or in my bed, guess which makes more sense! Michael used to have a standing rule that the person in the passenger seat of the car would engage him in conversation while he drove, but now he just expects me to take a nap.  We've tried to talk on the way home from the doctors, but it's laughable. I can't follow the conversation. I can't remember the question long enough to answer it.  It's just pointless.

Here's the thing: My daily reality is that I am exhausted and in pain.  All. Day. Long.  No, I'm not doing great.  Yes, I've made some wonderful progress and I'm very grateful for it, but it's often hard to remember in the reality of my day to day.