My Blood Pressure

My blood pressure has been high for several years now.  I have taken many different medications, but none has solved the problem long term.  I saw my doctor on October 19, and my blood pressure in his office was 153/100! Yikes.  He changed my medications around, added a new one, and yesterday when I took my blood pressure it was 107/75.  Much better.

Let’s hope this medication keeps this problem under control for now and keeps it controlled long term.

My older sister went to the eye doctor today and she has cataracts.  She will have surgery sometime in early 2016.  I fear this is something else I will develop because of my daily steroids I take for my adrenal insufficiency.

Thank you steroids.  You keep me alive, but you’re killing me!

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What the Heck is STRESS??

  1. Stress:  A state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.
  2. Stress: Your bodies way of responding to any kind of demand or threat.  When you feel threatened your nervous system responds by releasing a flood of stress hormones, including adrenaline and cortisol, which in turn rouse the body for emergency action.

But, if you have adrenal insufficiency, your body doesn’t produce the hormones needed to handle stress.  I have adrenal insufficiency and it is a life-threatening illness.

I could go on and on about stress, but most people only think of the normal stress that everyone experiences on a day to day basis.  The stress that aggravates you, puts you in a bad mood, makes you cross with your family or co-workers can land me in the emergency room. An injury or illness can stress out my body so quickly that I don’t see it coming.

Several years ago, my Father-In-Law was suffering from cancer and was moved to a nursing home.  We had out of town family staying at our house, and when he passed away we had all the planning and arrangements to take care of.  A very stressful time.  My family kept a close eye on me, made sure I “stress dosed” and got enough rest.  I made it through the whole thing perfectly.  Two weeks later, my cat died.  I ended up in the hospital with my worst adrenal crisis to date. Dangerously low potassium, sodium and blood pressure.

Another incident that lead to an adrenal crisis was food poisoning.  A UTI threw me in the emergency room with no warning also.

If you have adrenal insufficiency, you must always be prepared! Let people around you understand the importance of your emergency injections, and getting you to the hospital quickly for IV steroids and treatment.

You never know what can start an adrenal crisis, be aware of what your body is telling you.  Don’t ever think you can “ride it out” and get better on your own.  Go to the hospital!

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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!

R.I.P. Fridge

Our refrigerator up and died a few days ago.  It was a slow death.  One day it got confused and poured water into the broken ice maker and it ended all over the kitchen floor.  All the drawers and shelves were wobbly. If you took the chance to open the door you needed to be prepared that your feet were going to get hit by a flying yogurt or worse….the entire veggie drawer and the contents. Then the ice cream started to melt.  That was the last straw.

So, we took a trip to our local Menard’s store, the wanna-be Home Depot of the midwest.  Mr. “I can’t make a decision” actually agreed on my favorite (!!!) and we happily went to the front to arrange delivery.  Then it hit me.  Weakness, dizziness, dry mouth.  The “I am going to faint if I don’t sit down now” feeling.  Thankfully Joe found a chair for me or I was going to lay down on the floor.  People look at you funny when you do that.

You would imagine that after twelve years of this disease I would be prepared for this to happen every so often. Nope. Getting pissed off upset doesn’t help at all.  But of course I did.  Really really pissed me off upset.   Then I was good for shit nothing the next day.  

The refridgerator will be here Wednesday.  I hope I’m awake so I can open the door for the delivery men.

AHHHHHHHHH  Mr. Addison, I love you!

I JUST WANT TO BE OKAY

“Someone asked me what are my “Favorite/most useful coping skills – for pain, depression, and all the silly side effects that come with having chronic illness?””

Hmmmm?  Do I have any coping skills, or do I just roll with the flow?  My first thought is that I am only able to cope with my illnesses with the help from my medications.  Other than that, I don’t handle this “chronic illness stuff” well at all. But, I have made it  through many a bad day by remembering some basic things:

  • Accept what you have and don’t argue with God anymore…I don’t mean give up…just accept it

  • Accept help from the people who love you

  • Accept that your HUSBAND and kids are as frightened as you are about this new thing called “chronic illness”

  • Help your family understand what you need…I don’t mean a glass of cold pop or a sandwich…You need to tell them you need rest, understanding , companionship, and sometimes you need to be alone just to be mad at this rude intrusion of illness

  • Help yourself by keeping a journal or blog to express your feelings that you don’t want to share with anyone

I had to accept that I couldn’t drive.

I had to accept that I had to leave my job.

I had to accept that my social life was extinct.

I had to accept that many people just would never understand my illnesses.

i had to accept that my family would not become malnourished because I CAN’T cook every night.

i had to accept that my house would never be clean again.

So, I adapted and tried to do what I could to make my life a little more comfortable without feeling guilty.

My bedroom is beautiful and an oasis for me.  Fleece sheets when it’s cold, crisp cotton sheets when it’s not.  Ridiculously expensive down pillows that are worth every penny I spent on them.

 At times, when I feel bad days a’coming,  I will keep healthy snacks and drinks in my room so I won’t have to go downstairs.

I let my dog and cat sleep with me when I am feeling especially sorry for myself.

I am not embarrassed to ride in those cute little scooters they have at some stores.                                                  

 I am not embarrassed to sit on whatever I can find if I get tired when I am out…and that includes the floor.

 I am not embarrassed to go out without makeup…something I would never have done before I got sick.  I will stay in my jammies all day if I need to.

Sometimes I won’t take a shower until someone comes home because I am afraid I will fall.

 I finally admitted I needed a handicapped tag for my car.

 I let myself cry if I want to.

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ALL I WANT IS TO BE OKAY

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

poop9Had 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.

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Do you have Adrenal Disease?

The adrenals are such tiny little things and so is the pituitary gland….so why are they such a BIG problem?  I often joke and say that my pituitary went on vacation and never came back, so my adrenals don’t know what to do. 

I was diagnosed with Isolated ACTH deficiency in 2001, and haven’t been well since.  ACTH is a hormone made by the pituitary gland that signals the adrenals to produce cortisol.  But, like I said my pituitary gland is on vacation.  In my case, there is nothing that points to why or how I developed this disease. 

I am always interested in how other people were diagnosed and how others cope with their condition.  Although my doctor is well-informed, and treats a handful of patients with some type of adrenal disease, I understand I am lucky.  I have heard horror stories from other people about their doctors who just don’t get it.  So, what can you do to make sure YOU understand what is going on with your body? 

  • Support groups and health bloggers are a great source for information and understanding
  • Understand your treatment and meds with the help of your physician and your pharmacist (I have found pharmacists to be very willing to talk and answer questions that some doctors don’t want to take the time to do)
  • Ask Tell your doctor what you want, and don’t take no for an answer, I regularly ask to have my DHEA level checked because I want to know.  She doesn’t necessarily care about it. 
  • Learn to listen to your body, it often will tell you what it wants/needs
  • Be prepared for anything.  Something you might think is small or insignificant can land you in the ER
  • Always keep a list of your medications with you, if you are ill it is hard to remember everything
  • Educate your family so they can advocate for you in case you can’t
  • If needed, make sure you have an emergency injection available to you at all times
  • Wear a medical alert bracelet or some type of ID that will alert emergency personnel of your condition

If you have important hints to share, please do.  Below, I am sharing some of the most important links and interesting people that I have found to learn more about various adrenal diseases.

Addison Village – Here you will find a wonderful group of people who are knowledgable and willing to share all their ups and downs with anyone who asks.  I learned more from this group than any other website

Finding Lana – A great blog written by a woman with Addison’s Disease,  lots of information on her blog!

Simply Suzanna -Suzanna always has something cheerful to say, and her blog is pretty to look at too!

Hypogal – Lisa, who has Sheehan’s Syndrome shares her story with her readers on this wonderful blog.

Addison Disease Facts – A Blog written by my friend Jo, who also helps people through her website Addison Village (mentioned above)

This has nothing to do with Addison’s Disease….I just like it!

http://www.youtube.com/watch?v=qnUZ-Uw05kg&feature=related

 

Ashley Judd – Puffy Face – and Steroids