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!

ambulance2

 

 

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.

TSH?

I am at my nerve’s end with all of this.  I had labs done and talked to my GP at the beginning of last week.    Negative for RA, sugar is OK,  potassium and sodium still good.  Nothing really to help explain the unrelenting fatigue and weakness…EXCEPT…my TSH is low at .096.   Now, I must admit I don’t know much about the thyroid, even though I have been on meds for quite a while.  Everything has always been fine, take my cute little green pill and worry only about my cortisol levels.  (GP did tell me that normal range is 0.5 – 5.0, so my numbers do sound low.???)  BUT if I am indeed hyperthyroid, I am showing none of the classic symptoms.  I have lost my appetite and some weight, which has made me happy, but not if it is caused by over active thyroid. 

And even though my labs showed no infections, bladder or UTI etc, I am running a low-grade fever on and off.  Usually about 99.3 – 99.5. 

So, my GP sent a FAX to my endo and I expect to hear from her (hopefully) by Monday.   

My sleep has been totally screwed up, trouble falling asleep at night, and trouble staying asleep at night.  That’s a given with chronic illness I know, I see quite a few of my buddies on-line in the middle of the night.

Let’s hope Dr. Endo-Girl comes up with something……………sigh.

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.