Bump In The Road

I have hit a  Bump in the road.  This week the pain and the fatigue caught me up and hunted me down.  Like a frightened animal, I tried to hide. It did no good.  The pain and the bone crushing fatigue that is often its dance partner,  came to find me.

I realized that no matter how much control I try to exert over my illness(es), I will never, ever win.  It seems I have to learn this lesson over and over and each time I am deeply disappointed; each time I am frightened that the good or better days won’t come back again.

I suppose it is a little like going on a ride on a small plane.  Everything is smooth and the terror of being so close to falling out of the sky is mediated for a while.  You can almost touch the clouds; there is a sense of exhilaration and “I think I can do this.”

And then, just as you settle back, Bump!  You hit an air pocket.  Your pilot, or physician, is unperturbed, “no problem” she will say.  But really, it is a problem.  Because suddenly the ground is much too close.

This how I felt this week.  I felt myself slipping closer and closer to crashing into the ground.  Finally, I succumbed and went to the ER to try and get some pain relief.  My pain was in the same place it has been for over a year; the upper right quadrant of my abdomen.  I have been trying to do acupuncture, diet, exercise and whatever else I can think of to help that pain but sometimes it just eats me alive.

I saw my rheumatologist  and she suggested I not give up on all gastroenterologists.  In fact, she wants me to return to the pancreas guy in San Antonio.  So, I called for an appointment.  I dare not build up hope for a cure.  Besides, they can’t see me for five weeks.  It is just the same old thing as it has been.

My Mayo records have not arrived yet.  It is as though I never went there for two weeks.

Truly, I got screwed over at Mayo this time.  I am angry and sad about that whole thing.  My rheumatologist is going to ask around for other pancreatic specialists in the area and help me with this so for that I am most grateful.  In the meantime, I am signed up to see a nutritional counselor that specializes in food allergies.  Also, I am trying to decide whether to come off of or stay on prednisone.  If I am off, I swell up because my body is no longer working properly without them.  If I take them, I have a constant case of thrush.

But, this is all background noise.  I just want to get from one day to the next and take care of my family.  I can do that as long as I don’t get wiped out by the pain and fatigue.  Those two partners in crime are the ones that literally take me down.

So, what to do.

Fight the good Fight.

Keep posting from the Immune System Wars.

I need to keep writing.  I have been slacking of late.  I have been editing my essays but have not written anything new.  I don’t even know if this blog is helpful at all.  I don’t think I am making the best use of it.

But it is a weapon and I must use all the weapons I have.

So, “onward through the fog” and all that.

“Chin up and all that” too.



3 Replies to “Bump In The Road”

  1. Keep writing, Katie! Have you heard of this book? “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties” by Laurie Edwards. I heard her interviewed on Fresh Air last week. Very interesting, and there might be something useful in there for you.

    1. Thanks, I have heard of that book. I had no idea she sick so young. I am going to see if I can find the interview online.

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