Addisons Disease Part One

This will be a two part post.  l knew I would have to eventually have a detail post about it, and then an accounting of how it has personally effected my life.  I will be honest.  I cringe every time I think about having to talk about it. I am not comfortable in my own skin to wear this kinda of vulnerability on my outsides.  BUT........ in starting a blog I'm stepping out in faith and courage with the hope of helping others that go through the same.


Addisons Disease is also known as Primary Adrenal Insufficiency.  There are other kinds to name a few: CAH, Secondary Adrenal Insufficiency, I have "met" people with both Addisons, and Secondary, and Idiopathic Insufficiency.  It does not matter in my mind how you have gotten to this diagnosis, the fact is your adrenals are not working, or your brain is not telling your adrenals to work.  Statistics say only about 1 in 100,000 people are diagnosed with Addisons disease.  Doctors for the large part do not understand the disease, and under treat it, mistreat it, and in turn the patient suffers. Usually, treatment is steroid replacement and aldosterone replacement. An inexperienced doctor will say take three times a day you will be fine.  But that is far from the truth.  We are finding, mimicking the natural circadian rhythm the body would produce is far more effective.  Which can be hard to do, if you have any absorption issues, don't clear medication at a reasonable rate..etc.etc.  We also need to anticipate our need for steroid replacement during illness, surgery, times of stress (happy or sad).  A normal persons body would spike cortisol for them in any time it felt a burst of energy or the age old saying "fight or flight" that is your adrenals.   Having Adrenal Insufficiency you have to try to do that on your own.  
The problem with that is when you fall low on cortisol you can't really think straight.  You think you are fine and can even become combative.  Or it can get bad before you even get a chance to correct the problem and you will end up in an ADRENAL CRISIS.  Every person that has AI should carry an EMERGENCY INJECTION KIT for this reason.  Adrenal Crisis' are very dangerous and come on can be quick and fatal.  
An Adrenal Crisis is when your body has low cortisol, possibly electrolyte imbalance, low blood pressure, and you need help NOW.  Here are some symptoms of a CRISIS

Weight loss

Increased abnormal sweating

Slow movements

Dizziness

Nausea

Vomiting

Reduced blood pressure

Electrolyte abnormalities

Low level of adrenocortical hormones

Low cortisol level

Abdominal pain

Fatigue

Headache

Fever

Loss of appetite

Joint pain

Severe weakness

Increased heart rate

Increased breathing rate

Chills

Dehydration

Confusion

Coma

Now I will talk about the symptoms of Addisons Disease.  But, they are board.  And I have found that everyone with AI has had symptoms that are not on the doctors "list".  Tradition symptoms: fatigue (it's a fatigue you can't explain), extreme nausea, weight loss (I know some people have even been told they have an eating disorder), tanned skin, low blood pressure, and salt cravings.  Yes, salt cravings. It is a running joke in our support group online about pickles, because almost all of us drink pickle juice.  I have eaten a spoonful of salt before.  We are salt wasters.  We sweat it out, we pee it out. Our bodies crave it.  Alright, that is it for part one.  I will tell you about my day, yesterday in part two.  There will be more letters and details about my constant companion Addison.  She has be a destructive bitch, but I think she has been trying to teach me lessons and give me perspective.  So, I am trying very hard to see her as another blessing.  That I get to see the world in a way that the people around me can't see, because of her.  

If you have Adrenal Insufficiency I would love to point you over to the Facebook support groups.  They are closed groups so no one knows you are in them and you can be surrounded by like people and have privacy.  

A very large group of people with such a vast knowledge about what we are going through.  

I also recommend SECOND CHANCES, it is a eBook on Kindle.  It is all about AI. People with it, telling their story. 

and Take a look at Clearly Alive's Blog.  She has AI, and she was the first blog I followed when diagnosed.  

Disclaimer: I am not a medical professional... I am just a someone who googles web Md a lot! and is an advocate for herself.  I encourage you to do the same... SO with  that being said don't tell your doctor Crystal said this or that so I did this.. Use your head.  Make sound medical decisions that are right for you.   But above all else be your own advocate. No one else will.  My dear friend C just posted a quote "Be a voice not an ECHO" 

 Make it a good one!!