Note in a Christmas Card

Dear Friend,

I was so surprised to see you at the store the other day!  When I said you looked so good, you starting crying.  I didn’t know. I’m sorry. I remember when you got sick so many years ago, after all this time I just assumed you were better.  I didn’t know.  I remember that we used to talk on the phone a lot and when we would bump into each other at the grocery store we would stop and gab for a few minutes, and I remember those baseball games when the kids were little, it was always so hot!  I thought our lives had just changed because the kids grew up, I didn’t know what you were still going through.  Like the old saying…”out of sight, out of mind”, I guess.  Hadn’t seen you at church for a long time, but you told me it is hard to get ready and get there.  I didn’t know.  You told me you seldom drive or go anywhere.  You told me that both boys moved all the way to Denver, I didn’t know that.  I didn’t know you had to quit your job and you haven’t worked since 2001.  I didn’t realize you have been ill since 2001, how could that be?  After siting with you for a while I learned about your illness.  I didn’t know there was no cure.  I didn’t know how your illness has totally changed your life.  I didn’t know your husband works three jobs, I guess that’s why I never see him!  I didn’t know that most of your friends have stopped calling you, just like I did.  I admit that I stopped inviting you to things at my house because you often declined or cancelled last minute. I didn’t know you were that sick.  You look so good, like nothing in the world could be wrong.  I will never say that again to you.  Instead I will ask you if there is anything I can do for you. A ride to the doctor?  Pick up your prescription? Take the dog to the groomer or for a walk? Come over and watch TV and help you with your laundry? I am so so sorry, I just didn’t know.

Love, Carla

The Name Game – A Contest

I’m asking all my creative Friends to help me find a new name for my blog.  I’ve been writing about my adrenal disease for years, but have really avoided discussions about my digestive issues. It can be embarrassing to talk about “poop”, but let’s face it…everybody poops!   Crohn’s Disease can be debilitating and often harder to deal with than my other illness.  My adrenals have been behaving, more or less, so I have nothing to complain about….except my poop problems. I want my blog’s name to reflect my challenge with both Crohn’s and Addison’s Disease.

So here goes.  Whoever comes up with a great name……wins! The winner will receive a box of cheesy Chicago memorabilia straight from Walgreen’s and the Dollar Store…..we have good junk here in the Windy City.

Submit your idea in a comment…..asap….and I will pick a worthy name and send out your prize!

Another day

My hubby Joe has been home since Friday doing some DIY work.  Because he has been spending so much time in the house he has been re-aquainted with the unpredictability of my day to day activities.  He has dealt with my illnesses along with me since 2001, and has been there through everything.  He understands that my energy level can change quickly.  He understands that I cannot leave the house if my Crohn’s monsters are visiting.  He understand that I might spend the morning sleeping, and then still need to rest in the afternoon.  He understands that my pain levels can be minimal for days and then be doubled over with cramping and spasms with no warning.  He knows that planning something doesn’t mean it will really happen.

Today I am totally exhausted.  I changed the sheets on the bed and it knocked me out.  I am pissed at my body today.

So, now what? WARNING…..TMI…..toilet talk

Had my endoscopy and colonoscopy on March 7 and everything went smooth.  I didn’t wake up during the test, which is always my greatest fear.  Doctor said he removed several polyps from large intestine, and one off my esophagus.  He got a few samples from my small intestine to test for active Crohn’s.  Everything came out good.  No cancer, no diverticulitis, no Crohn’s, no monsters and no aliens.  No infections either. So now what?  Of course he uttered the two things that us Poop people never want to hear……….IBS and spastic colon.  It was a relief that there was no indication of active Crohn’s Disease, but all of this is so frustrating.

We talked about the “poop attacks” and the problem with gas pains, spasms and toxic smelling gas.  No explanations.

The “clean out” went fairly well, but the thought of Gatorade at this point makes me gag.  I have not had any diarrhea or terrible pain since the tests, so maybe I pooped out the monsters that were causing my major problems. Hopefully.

Dr. Handsome wants to do a short-term  treatment with XIFAXIN in hopes that it will kill anything left inside.  I looked up the medication, and I DO NOT WANT TO TAKE IT!  The warnings listed for this drug made my head spin.  I haven’t decided what to do yet.

I’m still feeling the effects of the stress on my body from it all, thanks to my adrenals….the lazy bastards.  I have been quite exhausted and sleeping a lot and have even stress dosed (taken extra steroids), which seems to be keeping my head above water.

So, I am hoping I will just go back to my “normal miserable” with the G.I. problems, which I don’t think is asking too much.

You’ve Got What?

 

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This is a repost from a closed blog.

 

Starting in 1985, I had one medical problem after another.  Two babies, an ectopic pregnancy, a miscarriage, 9 surgeries for gallbladder, cysts, hysterectomy and a bowel resection…but nothing could have prepared me for what happened to me in 2001.

 

I was so sick I couldn’t get out of bed.  I was exhausted, weak, I couldn’t eat, I was confused all the time, and all I did was sleep.   I had debilitating fatigue, muscle weakness, cramping,  low potassium, and nausea.  The doctors kept attributing all my problems to my Crohns.  But I knew it was something else.

 

After several ER visits due to extreme weakness, I was finally admitted to the hospital by my Gastroenterologist.   You know those doctors that tell you they ran every test in the book and didn’t find anything?  Well this guy DID run EVERY test in the book, and he solved the big mystery

 

ADRENAL INSUFFICIENCY.

 I had never heard of it.  Adrenal insufficiency?  What does that mean?  Where are your adrenal glands and what the heck do they do?  What does the pituitary gland have to do with all of this?  What is cortisol? ACTH? DHEA?

 

And the biggest question “why didn’t someone figure out sooner what the hell was wrong with me?”

 

 

 I saw my Sister’s  endocrinologist, I went to the University of Chicago Hospital, and I took a trip to Mayo Clinic in Minnesota.  None of these doctors could make me well.  I was told to take my meds and I should feel better.  How many of us have heard that line?   

 

 Because my endocrine system is shot ( pituitary, adrenals, thyroid and ovaries) I am a hot mess. 

The most important hormone the adrenals release is cortisol. Cortisol is the “flight or fight” hormone, it helps you handle stress.  Major stress, such as injury or illness, dehydration, low potassium levels, vomiting, fever or an infection can throw you into an Addisonian crisis, which requires immediate medical attention. 

 I have had many trips to the ER in an ambulance and too many hospital stays to remember.  When a person goes in crisis, IV steroids must to given to keep the patient from going into shock. This can all happen very fast. I keep a supply of steroid injections on hand so if needed, I can give myself a shot before I head to the hospital.  Because I take steroids everyday, infection or illness can be easily masked.  Just as people take steroids to help with inflammation from allergies, asthma or rashes, my steroids can hide a problem until you are very sick or in pain.  In 2005 I had a severe diverticulitis attack without even knowing what was going on.  The steroids kept the inflammation at bay and the infection hidden so I didn’t have pain. One morning I woke up in terrible pain and I ended up in the ER.  An MRI showed a mass in my colon and I needed emergency surgery to remove and repair the damage. 

 

There are so many side effects for a person on daily steroid therapy.  It  can damage bones, the lining of the stomach, weaken  your immune system, can cause cataracts, depression and insomnia.  Even GOOD stress can land me in the ER. 

 

   It doesn’t have to be something bad to affect your stress level, and with no cortisol, an Addisonian is in big trouble. Many times my family noticed I was in trouble and got me to the ER. Confusion is one of the first symptoms for me, and then I just get stupid.  I don’t even realize what’s happening to me. 

I have to wear a medic alert bracelet, and I keep a list of all my meds in my wallet, as does each of my family members.  

 

My life has been forever altered by this disease.  Days, weeks, months and years have been robbed from me because of my inability to function.  From one day to the next I never know how I am going to feel.  Sadly, I have more bad days than good.  My family has been there for me always, and for that I am thankful.